Re: -March 29 Journal- Moon- A Peek into the daily life of Moon's World. Please Read ASAP and give me insights for lawyer

[Guest guest]

TJ --

Please know that I will be thinking of you on the 5th and praying for a positive

response from the SSI.

The journal you wrote was so moving and really showed how difficult it can be to

live with EDS. You are one of the bravest people I know and you deserve all the

happiness and peace life can give.

Take care,

Love, Patti

-March 29 Journal- Moon- A Peek into the daily life of

Moon's World. Please Read ASAP and give me insights for lawyer

>

>

[Guest guest]

TJ --

Please know that I will be thinking of you on the 5th and praying for a positive

response from the SSI.

The journal you wrote was so moving and really showed how difficult it can be to

live with EDS. You are one of the bravest people I know and you deserve all the

happiness and peace life can give.

Take care,

Love, Patti

-March 29 Journal- Moon- A Peek into the daily life of

Moon's World. Please Read ASAP and give me insights for lawyer

>

>

[Guest guest]

TJ --

Please know that I will be thinking of you on the 5th and praying for a positive

response from the SSI.

The journal you wrote was so moving and really showed how difficult it can be to

live with EDS. You are one of the bravest people I know and you deserve all the

happiness and peace life can give.

Take care,

Love, Patti

-March 29 Journal- Moon- A Peek into the daily life of

Moon's World. Please Read ASAP and give me insights for lawyer

>

>

[Guest guest]

TJ,

Well the lawyer sounds like he knows what he's doing! I am sure you will

win. Though I've heard it takes the judge a couple of months to decide. Is

that your understanding of it all. I'm here. Good luck with the hearing! I

hope it all goes well for you!

Hugs,

March 29 Journal- Moon- A Peek into the daily life of

Moon's

> World. Please Read ASAP and give me insights for lawyer

>

>

> >

> > Please Read ASAP and give me insights for lawyer

> >

> >

> > I know this is long guys- but this is what I plan to hand lawyer

tomorrow-

> do u see anything that needs editing? Thanks in Advance- TJ

> >

> >

> >

> > March 29-2004

> >

> > Tried to write a daily journal but hurts more to holding a pen seems

to be

> something I can only do in small spurts and cramps my hand/fingers,,

leaving

> the writing nearly unreadable- so decided to keep one on computer- that

way

> when the typing gets to be too much - I can hit save and finish it

> later..... and have it still be readable later.

> >

> > I went to bed at 12:00 p.m. last night- felt so miserable...dizzy,

> headache, you name it - it hurt.

> > Woke with a jolt at 4:00 a.m. with another pain streak. How can that

be

> with the amount of medicines I am on?

> >

> > It isn't time to take my medications yet. But I can take one of the

> breakthrough pain ones so am doing that and writing this while it gets

to

> work. Hoping it will be enough to hold out until 8 a.m. when I can take

the

> other meds to help with deeper pain.

> >

> > I figure taking a shower may help soothe the muscles/bones so attempt

to

> get morning shower done. What a chore this has become. Takes me so

long to

> do things anymore.

> >

> > Using a cane - I hobble around getting belongings-

> underwear-camisole-shirt-pants-nylons- towels-washcloth-shampoo etc. I

> place them in the wheelchair seat so I can roll it to be near the shower

for

> easier access when I am done in shower. I place the towels on top of it

> all. The shower has a small step over ledge and I have to remember

which

> foot to put up and over first due to left knee not bending.... actually

I

> end up getting in backwards. The ledge is not that big but seems huge

to me

> when I'm trying to get in the shower.

> >

> > I use a shower seat due to not being able to stand through the length

a

> shower would take- I am able then to put legs up on the little ledge

that is

> normally used for soap/shampoo etc. I use a showerhead with a hose .

After

> getting situated and getting water to the correct temperature- gotta

make

> sure its not too hot or too cold or more problems occur. Its nearly

> impossible to wash my hair without wincing . I couldn't even begin to

> guesstimate a length of time it takes me to shower.. and getting out -

dried

> off and dressed is another whole experience in itself. I reach to get

the

> towel while on the shower seat and do most of my drying off while in the

> shower stall. I can't place a towel around my hair -tuban fashion- as I

> used to- hurts too much to hold arms up that long so I just pat it as

dry as

> I can. Forget blowdryers- takes too much effort and am no longer able

to

> hold any item the time it would take for it to be of use anymore anyhow.

> After drying self as best as I can- I attempt to put my clothes on-

which is

> a pain even though I choose clothing without buttons/snaps/zippers. I

get

> the camisole on then sitting on the shower seat yet- because the one

knee

> doesnt bend properly I have to work my left foot through my underwear

and

> then put the right leg in which of course is pretty lifeless so takes

effort

> to get that leg in as well- same steps for nylons- only these take

forever

> but are a must medically- it is getting to a point though that one day I

> will no longer be able to do those either. I can't even describe the

amount

> of effort and time it takes to get those buggars on. They are support

hose

> and trying to get them on two painful legs using fingers that tend to

not

> bend the ways they need to bend in order to help pull them on and up is

yet

> another huge part of my day.

> >

> > When finally dressed- pull on shirt- pull on pants- its time to brush

> teeth. Making my way over to the sink by using the wheelchair for

balance -

> I turn the water on and try to get toothpaste on my toothbrush without

> getting frustrated enough to just say ' Forget it !'

> >

> > Again- trying to hold something small in my hand - the toothbrush- and

the

> toothpaste tube- my fingers are having a heck of a workout and creating

> nothing but pain for me. The toothpaste tube has become one of my worst

> enemies. I make a mental note - like thats going to be of much use-

with

> the fog that is in there , by the time I get to where my store list is-

I

> most likely won't remember it anyhow.- but I make a mental note to write

> down - toothpaste in pllastic stand up bottle. I work at getting

toothpaste

> out of the tube and onto the toothbrush.... its almost impossible- ugh-

its

> something so small yet causes me such big problems.. I even lay the

> toothbrush on the counter and try to lay the tube of toothpaste down so

that

> I can maybe work some toothpaste out by using both hands - pushing on

the

> tube to get some out... when even a mere amount is out- I go with it.

No

> sense of fighting with a toothpaste tube! All that strain for just a

little

> dab - how irritating... if it weren't for hygiene and health- I'd be

almost

> willing to pitch it in the trash and not bother with it anymore.

> >

> > Before leaving the ladies room, I try to get all that needs done done-

> takes too much effort going back and forth to have to return for some

little

> forgotten item. At this point with wet hair, I just leave it that way

to

> dry. I have problems using the ( toilet ) as it seems someone adjusts

it

> lower and lower each day.... How to get in the proper position with a

knee

> that doesn't bend and a leg that takes brain power to make go the right

way.

> I end up finally getting there but geesh what a lot of work just to go

to

> the bathroom.

> >

> > Its going to be a scooter day it appears-or at least until the

medications

> are able to make their way into my system at 8:00 a.m. - I crave a cup

of

> coffee - so use the scooter to get out to the kitchen. I use the cane

to

> get to the scooter and have to get in it just right ... if I get in it

on

> the wrong side, I end up having to get back up again and going to the

other

> side.... knee doesnt bend- I place the cane between my legs and hit the

> button to go out into the kitchen but can't reach the sink- ugh!

Another

> struggle to stand- get water- put the filter in the coffee pot- ever try

to

> get those filters to seperate without finger trouble? ha... its triple

the

> time trying with sore fingers- the scooter has a basket and I use a cup

that

> has a lid on it so I don't spill it- if I am using the scooter I put

the

> cup in the basket and then head to wherever I am going- if I use cane -

I

> don't spill it as easily - ok - some drips out - but only a small

amoount ?

> by holding cane and trying to walk with a cup of coffee.

> >

> > It still isn't time to take the pain meds and the breakthrough pain

med is

> not really helping yet ... but I figure if I rest for a while that maybe

the

> pain will lessen some. I decide to read some e-mail ... I can never

seem to

> get comfortable.... After about 15 minutes, I have to get up and move a

bit

> but cant stand for longer than a minute it seems before the pain

worsens.. I

> sit back down for a bit and of course during sitting time- its a matter

of

> deciding if it feels any better with legs up on a chair or down- its

> something I just keep trying to get comfy and with them up on the chair

it

> seems to help cut back on some of the swelling in my legs.

> >

> > Soon it will be time to get Dakota who is 11 up so he can get ready

for

> school. I have to keep myself occupied so that he isn't late. So I

keep

> going through the above measures until I hear the alarm clock go off.

> >

> > Finally- I managed to get through the time and get Dakota on the bus-

I go

> through such a sad spell after I see him leave on Mondays- as there is

an

> issue that has really wronged me but I basically have done all in my

power

> to change and get no where.

> >

> > I won't see him until Thursday night and only from the time school

gets

> out until 8 p.m. unless there is a half day of school- or no school- or

he

> comes down with some type of problem such as a belly ache etc.

> >

> > Stress really wears me out and makes me instant tired.... as if I

could

> fall asleep at the snap of a finger....... the boys arguing does that to

me

> as well but losing one child ( Kenny ) and then having to see Dakota

forced

> to live with Ken when its definitely unjustifiable really wears me . I

have

> taken my medications now and will finish my coffee and go back to bed.

> >

> > My head hurts, my stomach is nauseaus and I just all around hurt and

> really want to just cry where no one can see me.... I hate me

> sometimes........ hate the fact that there are so many - I can'ts in my

life

> now- but I try to keep my chin up and not focus on the what I can not do

any

> more- even though it takes much energy from me.

> >

> > I am off to lay down now- am feeling worse by the second- Good night.

> >

> > Never fails- the medications only seem to work for a small amount of

time-

> I can finally get to sleep and end up shooting out of bed with sharp

> pains...... never know where the pain is going to be...... sometimes its

> legs- sometimes its arms- sometimes its colitis/ulcer- sometimes its

severe

> headaches- just never know........ Doesn't really make a person look

> forward to waking up....... And as for pain shooting you out of bed-

talk

> about a complicated situation when you can't 'shoot' across the room to

try

> to walk off leg pain or cramp because your legs won't allow you to stand

for

> longer than a minute before it starts taking on severe pain as

> well.......... I almost feel like Im just doomed at this point.------- I

> reach around for the cane that I try to keep near me at all times- but

that

> thing is a danger sometimes by itself- it has fallen on me- etc........

if

> it were to hit me- it could cause severe problems too- just like when

that

> cell phone just barely knicked me. Can't believe all these thoughts run

> through my mind and I feel like I'm definitely not going to make it to

the

> restroom on time...... how can I? The pain is too high....... I am

finally

> in standing position but know if the floor has anything on it , like a

> little wad of paper or something the cat or kitten has played with and I

> happen to step on it I will be thrown out of balance......... not liking

> hospital stays too much- I tend to be careful......... with the use of

the

> cane I slide my shoes on......and begin to hobble to door- and then to

the

> rest room............. and barely and I do mean barely get there in

time.!

> >

> > The amigo is in the hall so I decide to get on it and make it to the

> office door where I can take another breakthrough pain reliever and

perhaps

> do some e-mail or a bit of web design to help ward of the pain level in

my

> mind......... it doesnt work........... so I decide to chat with a few

> friends for a little bit, but its gotten to a point that I really can't

last

> too long at that either....... I end up having to place legs/up down,

stand-

> sit...... its so frustrating.......... I want to be able to sit and do a

> website all in one sitting and I just cant do it any more! My fingers

will

> ache and make it maddening to even try to linger at the desk too

> long.........

> >

> > I feel constantly tired- but can not sleep as much as I really need

to. I

> look at the clock and realize - I haven't eaten and feel I better do so-

> especially with all the medications in me...... I can't eat before noon-

or

> I end up having an appointment with the toilet as my colitis and ulcer

are

> not agreeable for me to handle food before then. I get back on the

> scooter....... remembering to save time of standing/fussing by putting

legs

> in the right way the first time ( rarely do I get it right the first

time

> around ) ...... If is home - he will cook something like sizzle

steaks

> or hamburgers..... but when he isnt here - I end up going for something

> microwavable.

> >

> > It is very hard for me now to grasp anything out of the

freezer..........

> I can barely handle my hand being in there......... its sooooooo

> cold........ I hurridly pick a t.v. dinner or budget gourmet and slap it

on

> the counter - just barely missing the edge- encountnering yet another

almost

> mishap....... had it fallen, it could have hit me and yet another

> disaster.... but I cant hold on to the frozen dinner long enough to not

slap

> it on there as such as it is too cold and my fingers hurt from the way

you

> have to hold it........ I work at the task that most people can do in

five

> seconds of tearing off the box....... I can't guesstimate the amount of

time

> it takes me to get the box off and then peel off the plastic.........

> sometimes - I feel this isn't worth it and just leave it set there in

> frustration ...... and just go back to another room....... after I

finally

> get it all off- I stick the dinner in the cart of the scooter if it will

> fit......... if it doesnt- then on my lap.......... I do not care for

that

> idea too much....... Thank God the microwave is just at a height i can

push

> the button and throw it in and being digital there are really no buttons

to

> push but using thumb I turn it on for approx 12 minutes....... feeling

like

> I finally did accomplish something so minor to others but major to me- I

> head back to the office hoping to get some more e-mail done as I wait

for

> that t.v. dinner......... I am feeln dosey from the medications I

> guess......... barely able to keep my eyes open...... my back is

starting to

> hurt now too.....

> >

> > I look around the office and see a pile of bills that need paid- so

many

> things that need done and I want to accomplish........ I used to write

down

> a list of to do's and not stop until I had each thing crossed off......

> there is no way to do that now...... none at all......... I can not

tell

> one minute from the next if I will have the energy or how severe the

pain

> level will be to even try to accomplish all that needs to be done.

> >

> > I have finally got most of my bills payable online so that when due I

can

> just push a button and do it that way rather than try to grip a pen and

> write out a check....... but still- even though made somewhat easier, my

> eyelids get so heavy - depending on pain level and medication reaction

that

> sometimes I get to the url and thats about it ......... I no longer have

the

> power to do what I went to the url for.

> >

> > The buzzer goes off on the microwave........ " oh yeah- my

> dinner....... " -------- good thing it has a buzzer - or most likely I

would

> forget I even had stuck it in there . back on the scooter and out to

the

> kitchn...... grab a pot holder out of the microwave and put the plastic

> container on it and pray while its either in the basket or on my lap

that I

> will make it to the table without spilling it.... I sit at the kitchen

> table and look out the window - watching cars go by and missing the fact

> that I cant drive....... and also thinking about summer- hoping with the

> scooter- I will at least be able to get out there this summer for a

small

> ride and get some fresh air...... 2 years of being in a house can get

pretty

> drab!

> >

> > Most times I can't finish the dinner - so I stick it in the

refrigerator

> for later. ( On the amigo - of course ) Tad bit complicated to get the

> fridge door open/shut while placing that in there..... I try to get what

> items I will need - diet coke etc and place them in the basket and head

back

> to the office- still hoping to get through some e-mail or bills.........

but

> the muscle pain and leg pain, heck lets just say all over body pain is

too

> much to bear today and even with those medications..... I feel like I

have a

> foggy head and the meds are just not touching the pain. I give another

> shower another thought- so much work to do so though........ do I want

to do

> all that for that again? Most often not but I will anyhway with the

hopes

> that it makes me feel some better.

> >

> > Even sitting here - typing this, I almost can't keep at it...... I

have

> moved up down- feet up down- stand , sit- nod off.......... etc........

I am

> even wondering If I will get this done and I so badly want to - so its

> understandable what a day in the life of TJ is like. Its pretty much

> depressing and makes tears stream down my face at times to think about

all

> the stuff I used to do and no longer can do. Only thing that keeps me

going

> is thinking about how bad someone else is....... there are definitely

people

> worse off - yet I've went from hyperactive and hardly ever being home to

> basically being in this house from day to day........ outings consisting

of

> dr appointments and hearings......... I can't sweep- I cant vacuum- I

cant

> do laundry- I cant do dishes....... I can't even make my own bed......

> >

> > I give up- I am going to go lay down again.......... this is just too

much

> to handle........ maybe if I lie down again....... I can write some more

> later.

> >

> > Funny, even laying down isn't comfortable....... I can't stand a

blanket

> or sheet over my leg that has hardly any feeling......... which makes no

> sense to me- so I cover up best I can and try to think of good

> things......... my boys- my parents- Jesus- my friends that I have made

> online....... how would anyone get through 2 years of this without these

> people in their life? Just wish so badly I could do more- more for each

and

> everyone of them.......

> >

> > Sometimes the wheelchair seems the better way to go but it is such a

pain

> on my arms........ I really think someone needs to perfect those things,

> talk about uncomfortable.

> >

> > Great- Ive struggled to get into this bed and yet again, this time Im

> tired but can't sleep......... pain worsens if I lay here and can't

> sleep......... I gotta stop that........ I need to get back up and try

to do

> something to keep my mind off it.

> >

> > I hold back tears when I see the schoolbus go by and realize my baby

wont

> be coming home tonight....... he hates it when I call him baby , but he

is

> and always will be my baby. He can be such a handful yet it is so wrong

> that he was forced to live with Ken and all the pain from that memory

plus

> the fact that I am this ill and cant be with my own child? Just makes

me

> sick.......

> >

> > I do not get into watching t.v. since my son passed away in 1997 - its

> just too hard for me- as he and I had many favorites and I just can't

sit

> there and keep realizing he is not here- its too hard....... just too

> hard......... so I spend more time trying to make a memorial for him on

the

> web................ I look at the basket of yarn and wish I could

attempt

> crocheting again but things fly out of my fingers now as it is and I

realize

> crocheting would only cause me tremendous pain.......

> >

> > The room is starting to spin again and my eyes are droopy....... the

pain

> just never stops ughhhhh so irritating........ I watch the clock to see

when

> the next dose can go in and give me a bit more of a relief........ Once

> again I try to sit and do some e-mail and maybe get some sites started

or at

> least one photo uploaded....... I want so badly to spend time chatting

with

> the wonderful friends I have made and also to put some time into the

Online

> Ministry I built a while ago but I can't...... only for small

intervals.

> >

> > Saddens me that it makes most worry- but I can't console anyone by

being

> where I just cant be due to the pain level.........

> >

> > I read through some of the EDS groups and don't feel so alone as there

are

> others with the same symptoms and problems......... some can do more

than I

> , some are about the same as I. It does kinda bring some relief to mind

to

> know that there are others you can confide in and they are going to know

> what you mean.

> >

> > Supper time rolls around and I decide to try some soup- as my stomach

> doesnt feel it can handle much more than that..... I once again get on

the

> scooter and head to the kitchen......... but guess what? I can't open

it

> !!!!! Grrrrrrrrrrrrrrrr- it makes me so angry......... I holler up the

> steps for my 16 year old to come open the can so his mother can have

some

> soup. He , of course - opens it in a flash and with no problems....and

I

> stick it in a bowl that I can reach and just heat it up- its the type

that

> you don't even need to add water to .

> >

> > Try getting a bowl of soup to the table in a regular size bowl without

> spilling it on a scooter or even in a wheelchair or with a

cane..........

> nearly impossible.... so I use those bigger bowls.... like cool whip

> ones....... that way if it wants to splatter then so be it.......

> >

> > The rest of the evening is spent pretty much like the morning- one

thing I

> embarrassingly mention here- is using the restroom- I know it is not

good

> for anyone to " hold " it in but when it hurts so much to get from the

> scooter-cane-wheelchair and onto a ' toilet'...... one tends to put that

> matter off as long as possible.........

> >

> > My days are all like this......... and have been for 2 yrs or better

> now............ I had pains, leg cramps, spasms, bleeding, bruising easy

as

> I grew up too but never did anyone diagnose it with anything and now it

> makes sense.......

> >

> > Each day is the same as I've stated- but there is usually a surprise

or

> two- and those being-

> > looking down and seeing blood piles on the floor......... not really

> knowing where they came from.......... thinking they came from a cat -

> someone else getting hurt- and it isn't...... after checking the pets

out- I

> find out the blood is coming from me.

> >

> > I sometimes feel I need to wrap myself up in a bubble......... some

type

> of protective coating......... I am barely moving around due to pain yet

> somehow I get hurt each day.

> >

> > I had planned to make this a 3 day journal but there is nothing I

really

> can add here- everyday goes this way- with the exception of some new

'hurt'.

> and/or stress that makes my skin just bleed........

> >

> > I hope this helps give insight in how a person with VEDS lives in

Chronic

> pain........

> >

> >

> >

> >

> >

> >

> >

> >

> > God Bless And Hugs- Love Moon

> >

> >

[Guest guest]

TJ,

Well the lawyer sounds like he knows what he's doing! I am sure you will

win. Though I've heard it takes the judge a couple of months to decide. Is

that your understanding of it all. I'm here. Good luck with the hearing! I

hope it all goes well for you!

Hugs,

March 29 Journal- Moon- A Peek into the daily life of

Moon's

> World. Please Read ASAP and give me insights for lawyer

>

>

> >

> > Please Read ASAP and give me insights for lawyer

> >

> >

> > I know this is long guys- but this is what I plan to hand lawyer

tomorrow-

> do u see anything that needs editing? Thanks in Advance- TJ

> >

> >

> >

> > March 29-2004

> >

> > Tried to write a daily journal but hurts more to holding a pen seems

to be

> something I can only do in small spurts and cramps my hand/fingers,,

leaving

> the writing nearly unreadable- so decided to keep one on computer- that

way

> when the typing gets to be too much - I can hit save and finish it

> later..... and have it still be readable later.

> >

> > I went to bed at 12:00 p.m. last night- felt so miserable...dizzy,

> headache, you name it - it hurt.

> > Woke with a jolt at 4:00 a.m. with another pain streak. How can that

be

> with the amount of medicines I am on?

> >

> > It isn't time to take my medications yet. But I can take one of the

> breakthrough pain ones so am doing that and writing this while it gets

to

> work. Hoping it will be enough to hold out until 8 a.m. when I can take

the

> other meds to help with deeper pain.

> >

> > I figure taking a shower may help soothe the muscles/bones so attempt

to

> get morning shower done. What a chore this has become. Takes me so

long to

> do things anymore.

> >

> > Using a cane - I hobble around getting belongings-

> underwear-camisole-shirt-pants-nylons- towels-washcloth-shampoo etc. I

> place them in the wheelchair seat so I can roll it to be near the shower

for

> easier access when I am done in shower. I place the towels on top of it

> all. The shower has a small step over ledge and I have to remember

which

> foot to put up and over first due to left knee not bending.... actually

I

> end up getting in backwards. The ledge is not that big but seems huge

to me

> when I'm trying to get in the shower.

> >

> > I use a shower seat due to not being able to stand through the length

a

> shower would take- I am able then to put legs up on the little ledge

that is

> normally used for soap/shampoo etc. I use a showerhead with a hose .

After

> getting situated and getting water to the correct temperature- gotta

make

> sure its not too hot or too cold or more problems occur. Its nearly

> impossible to wash my hair without wincing . I couldn't even begin to

> guesstimate a length of time it takes me to shower.. and getting out -

dried

> off and dressed is another whole experience in itself. I reach to get

the

> towel while on the shower seat and do most of my drying off while in the

> shower stall. I can't place a towel around my hair -tuban fashion- as I

> used to- hurts too much to hold arms up that long so I just pat it as

dry as

> I can. Forget blowdryers- takes too much effort and am no longer able

to

> hold any item the time it would take for it to be of use anymore anyhow.

> After drying self as best as I can- I attempt to put my clothes on-

which is

> a pain even though I choose clothing without buttons/snaps/zippers. I

get

> the camisole on then sitting on the shower seat yet- because the one

knee

> doesnt bend properly I have to work my left foot through my underwear

and

> then put the right leg in which of course is pretty lifeless so takes

effort

> to get that leg in as well- same steps for nylons- only these take

forever

> but are a must medically- it is getting to a point though that one day I

> will no longer be able to do those either. I can't even describe the

amount

> of effort and time it takes to get those buggars on. They are support

hose

> and trying to get them on two painful legs using fingers that tend to

not

> bend the ways they need to bend in order to help pull them on and up is

yet

> another huge part of my day.

> >

> > When finally dressed- pull on shirt- pull on pants- its time to brush

> teeth. Making my way over to the sink by using the wheelchair for

balance -

> I turn the water on and try to get toothpaste on my toothbrush without

> getting frustrated enough to just say ' Forget it !'

> >

> > Again- trying to hold something small in my hand - the toothbrush- and

the

> toothpaste tube- my fingers are having a heck of a workout and creating

> nothing but pain for me. The toothpaste tube has become one of my worst

> enemies. I make a mental note - like thats going to be of much use-

with

> the fog that is in there , by the time I get to where my store list is-

I

> most likely won't remember it anyhow.- but I make a mental note to write

> down - toothpaste in pllastic stand up bottle. I work at getting

toothpaste

> out of the tube and onto the toothbrush.... its almost impossible- ugh-

its

> something so small yet causes me such big problems.. I even lay the

> toothbrush on the counter and try to lay the tube of toothpaste down so

that

> I can maybe work some toothpaste out by using both hands - pushing on

the

> tube to get some out... when even a mere amount is out- I go with it.

No

> sense of fighting with a toothpaste tube! All that strain for just a

little

> dab - how irritating... if it weren't for hygiene and health- I'd be

almost

> willing to pitch it in the trash and not bother with it anymore.

> >

> > Before leaving the ladies room, I try to get all that needs done done-

> takes too much effort going back and forth to have to return for some

little

> forgotten item. At this point with wet hair, I just leave it that way

to

> dry. I have problems using the ( toilet ) as it seems someone adjusts

it

> lower and lower each day.... How to get in the proper position with a

knee

> that doesn't bend and a leg that takes brain power to make go the right

way.

> I end up finally getting there but geesh what a lot of work just to go

to

> the bathroom.

> >

> > Its going to be a scooter day it appears-or at least until the

medications

> are able to make their way into my system at 8:00 a.m. - I crave a cup

of

> coffee - so use the scooter to get out to the kitchen. I use the cane

to

> get to the scooter and have to get in it just right ... if I get in it

on

> the wrong side, I end up having to get back up again and going to the

other

> side.... knee doesnt bend- I place the cane between my legs and hit the

> button to go out into the kitchen but can't reach the sink- ugh!

Another

> struggle to stand- get water- put the filter in the coffee pot- ever try

to

> get those filters to seperate without finger trouble? ha... its triple

the

> time trying with sore fingers- the scooter has a basket and I use a cup

that

> has a lid on it so I don't spill it- if I am using the scooter I put

the

> cup in the basket and then head to wherever I am going- if I use cane -

I

> don't spill it as easily - ok - some drips out - but only a small

amoount ?

> by holding cane and trying to walk with a cup of coffee.

> >

> > It still isn't time to take the pain meds and the breakthrough pain

med is

> not really helping yet ... but I figure if I rest for a while that maybe

the

> pain will lessen some. I decide to read some e-mail ... I can never

seem to

> get comfortable.... After about 15 minutes, I have to get up and move a

bit

> but cant stand for longer than a minute it seems before the pain

worsens.. I

> sit back down for a bit and of course during sitting time- its a matter

of

> deciding if it feels any better with legs up on a chair or down- its

> something I just keep trying to get comfy and with them up on the chair

it

> seems to help cut back on some of the swelling in my legs.

> >

> > Soon it will be time to get Dakota who is 11 up so he can get ready

for

> school. I have to keep myself occupied so that he isn't late. So I

keep

> going through the above measures until I hear the alarm clock go off.

> >

> > Finally- I managed to get through the time and get Dakota on the bus-

I go

> through such a sad spell after I see him leave on Mondays- as there is

an

> issue that has really wronged me but I basically have done all in my

power

> to change and get no where.

> >

> > I won't see him until Thursday night and only from the time school

gets

> out until 8 p.m. unless there is a half day of school- or no school- or

he

> comes down with some type of problem such as a belly ache etc.

> >

> > Stress really wears me out and makes me instant tired.... as if I

could

> fall asleep at the snap of a finger....... the boys arguing does that to

me

> as well but losing one child ( Kenny ) and then having to see Dakota

forced

> to live with Ken when its definitely unjustifiable really wears me . I

have

> taken my medications now and will finish my coffee and go back to bed.

> >

> > My head hurts, my stomach is nauseaus and I just all around hurt and

> really want to just cry where no one can see me.... I hate me

> sometimes........ hate the fact that there are so many - I can'ts in my

life

> now- but I try to keep my chin up and not focus on the what I can not do

any

> more- even though it takes much energy from me.

> >

> > I am off to lay down now- am feeling worse by the second- Good night.

> >

> > Never fails- the medications only seem to work for a small amount of

time-

> I can finally get to sleep and end up shooting out of bed with sharp

> pains...... never know where the pain is going to be...... sometimes its

> legs- sometimes its arms- sometimes its colitis/ulcer- sometimes its

severe

> headaches- just never know........ Doesn't really make a person look

> forward to waking up....... And as for pain shooting you out of bed-

talk

> about a complicated situation when you can't 'shoot' across the room to

try

> to walk off leg pain or cramp because your legs won't allow you to stand

for

> longer than a minute before it starts taking on severe pain as

> well.......... I almost feel like Im just doomed at this point.------- I

> reach around for the cane that I try to keep near me at all times- but

that

> thing is a danger sometimes by itself- it has fallen on me- etc........

if

> it were to hit me- it could cause severe problems too- just like when

that

> cell phone just barely knicked me. Can't believe all these thoughts run

> through my mind and I feel like I'm definitely not going to make it to

the

> restroom on time...... how can I? The pain is too high....... I am

finally

> in standing position but know if the floor has anything on it , like a

> little wad of paper or something the cat or kitten has played with and I

> happen to step on it I will be thrown out of balance......... not liking

> hospital stays too much- I tend to be careful......... with the use of

the

> cane I slide my shoes on......and begin to hobble to door- and then to

the

> rest room............. and barely and I do mean barely get there in

time.!

> >

> > The amigo is in the hall so I decide to get on it and make it to the

> office door where I can take another breakthrough pain reliever and

perhaps

> do some e-mail or a bit of web design to help ward of the pain level in

my

> mind......... it doesnt work........... so I decide to chat with a few

> friends for a little bit, but its gotten to a point that I really can't

last

> too long at that either....... I end up having to place legs/up down,

stand-

> sit...... its so frustrating.......... I want to be able to sit and do a

> website all in one sitting and I just cant do it any more! My fingers

will

> ache and make it maddening to even try to linger at the desk too

> long.........

> >

> > I feel constantly tired- but can not sleep as much as I really need

to. I

> look at the clock and realize - I haven't eaten and feel I better do so-

> especially with all the medications in me...... I can't eat before noon-

or

> I end up having an appointment with the toilet as my colitis and ulcer

are

> not agreeable for me to handle food before then. I get back on the

> scooter....... remembering to save time of standing/fussing by putting

legs

> in the right way the first time ( rarely do I get it right the first

time

> around ) ...... If is home - he will cook something like sizzle

steaks

> or hamburgers..... but when he isnt here - I end up going for something

> microwavable.

> >

> > It is very hard for me now to grasp anything out of the

freezer..........

> I can barely handle my hand being in there......... its sooooooo

> cold........ I hurridly pick a t.v. dinner or budget gourmet and slap it

on

> the counter - just barely missing the edge- encountnering yet another

almost

> mishap....... had it fallen, it could have hit me and yet another

> disaster.... but I cant hold on to the frozen dinner long enough to not

slap

> it on there as such as it is too cold and my fingers hurt from the way

you

> have to hold it........ I work at the task that most people can do in

five

> seconds of tearing off the box....... I can't guesstimate the amount of

time

> it takes me to get the box off and then peel off the plastic.........

> sometimes - I feel this isn't worth it and just leave it set there in

> frustration ...... and just go back to another room....... after I

finally

> get it all off- I stick the dinner in the cart of the scooter if it will

> fit......... if it doesnt- then on my lap.......... I do not care for

that

> idea too much....... Thank God the microwave is just at a height i can

push

> the button and throw it in and being digital there are really no buttons

to

> push but using thumb I turn it on for approx 12 minutes....... feeling

like

> I finally did accomplish something so minor to others but major to me- I

> head back to the office hoping to get some more e-mail done as I wait

for

> that t.v. dinner......... I am feeln dosey from the medications I

> guess......... barely able to keep my eyes open...... my back is

starting to

> hurt now too.....

> >

> > I look around the office and see a pile of bills that need paid- so

many

> things that need done and I want to accomplish........ I used to write

down

> a list of to do's and not stop until I had each thing crossed off......

> there is no way to do that now...... none at all......... I can not

tell

> one minute from the next if I will have the energy or how severe the

pain

> level will be to even try to accomplish all that needs to be done.

> >

> > I have finally got most of my bills payable online so that when due I

can

> just push a button and do it that way rather than try to grip a pen and

> write out a check....... but still- even though made somewhat easier, my

> eyelids get so heavy - depending on pain level and medication reaction

that

> sometimes I get to the url and thats about it ......... I no longer have

the

> power to do what I went to the url for.

> >

> > The buzzer goes off on the microwave........ " oh yeah- my

> dinner....... " -------- good thing it has a buzzer - or most likely I

would

> forget I even had stuck it in there . back on the scooter and out to

the

> kitchn...... grab a pot holder out of the microwave and put the plastic

> container on it and pray while its either in the basket or on my lap

that I

> will make it to the table without spilling it.... I sit at the kitchen

> table and look out the window - watching cars go by and missing the fact

> that I cant drive....... and also thinking about summer- hoping with the

> scooter- I will at least be able to get out there this summer for a

small

> ride and get some fresh air...... 2 years of being in a house can get

pretty

> drab!

> >

> > Most times I can't finish the dinner - so I stick it in the

refrigerator

> for later. ( On the amigo - of course ) Tad bit complicated to get the

> fridge door open/shut while placing that in there..... I try to get what

> items I will need - diet coke etc and place them in the basket and head

back

> to the office- still hoping to get through some e-mail or bills.........

but

> the muscle pain and leg pain, heck lets just say all over body pain is

too

> much to bear today and even with those medications..... I feel like I

have a

> foggy head and the meds are just not touching the pain. I give another

> shower another thought- so much work to do so though........ do I want

to do

> all that for that again? Most often not but I will anyhway with the

hopes

> that it makes me feel some better.

> >

> > Even sitting here - typing this, I almost can't keep at it...... I

have

> moved up down- feet up down- stand , sit- nod off.......... etc........

I am

> even wondering If I will get this done and I so badly want to - so its

> understandable what a day in the life of TJ is like. Its pretty much

> depressing and makes tears stream down my face at times to think about

all

> the stuff I used to do and no longer can do. Only thing that keeps me

going

> is thinking about how bad someone else is....... there are definitely

people

> worse off - yet I've went from hyperactive and hardly ever being home to

> basically being in this house from day to day........ outings consisting

of

> dr appointments and hearings......... I can't sweep- I cant vacuum- I

cant

> do laundry- I cant do dishes....... I can't even make my own bed......

> >

> > I give up- I am going to go lay down again.......... this is just too

much

> to handle........ maybe if I lie down again....... I can write some more

> later.

> >

> > Funny, even laying down isn't comfortable....... I can't stand a

blanket

> or sheet over my leg that has hardly any feeling......... which makes no

> sense to me- so I cover up best I can and try to think of good

> things......... my boys- my parents- Jesus- my friends that I have made

> online....... how would anyone get through 2 years of this without these

> people in their life? Just wish so badly I could do more- more for each

and

> everyone of them.......

> >

> > Sometimes the wheelchair seems the better way to go but it is such a

pain

> on my arms........ I really think someone needs to perfect those things,

> talk about uncomfortable.

> >

> > Great- Ive struggled to get into this bed and yet again, this time Im

> tired but can't sleep......... pain worsens if I lay here and can't

> sleep......... I gotta stop that........ I need to get back up and try

to do

> something to keep my mind off it.

> >

> > I hold back tears when I see the schoolbus go by and realize my baby

wont

> be coming home tonight....... he hates it when I call him baby , but he

is

> and always will be my baby. He can be such a handful yet it is so wrong

> that he was forced to live with Ken and all the pain from that memory

plus

> the fact that I am this ill and cant be with my own child? Just makes

me

> sick.......

> >

> > I do not get into watching t.v. since my son passed away in 1997 - its

> just too hard for me- as he and I had many favorites and I just can't

sit

> there and keep realizing he is not here- its too hard....... just too

> hard......... so I spend more time trying to make a memorial for him on

the

> web................ I look at the basket of yarn and wish I could

attempt

> crocheting again but things fly out of my fingers now as it is and I

realize

> crocheting would only cause me tremendous pain.......

> >

> > The room is starting to spin again and my eyes are droopy....... the

pain

> just never stops ughhhhh so irritating........ I watch the clock to see

when

> the next dose can go in and give me a bit more of a relief........ Once

> again I try to sit and do some e-mail and maybe get some sites started

or at

> least one photo uploaded....... I want so badly to spend time chatting

with

> the wonderful friends I have made and also to put some time into the

Online

> Ministry I built a while ago but I can't...... only for small

intervals.

> >

> > Saddens me that it makes most worry- but I can't console anyone by

being

> where I just cant be due to the pain level.........

> >

> > I read through some of the EDS groups and don't feel so alone as there

are

> others with the same symptoms and problems......... some can do more

than I

> , some are about the same as I. It does kinda bring some relief to mind

to

> know that there are others you can confide in and they are going to know

> what you mean.

> >

> > Supper time rolls around and I decide to try some soup- as my stomach

> doesnt feel it can handle much more than that..... I once again get on

the

> scooter and head to the kitchen......... but guess what? I can't open

it

> !!!!! Grrrrrrrrrrrrrrrr- it makes me so angry......... I holler up the

> steps for my 16 year old to come open the can so his mother can have

some

> soup. He , of course - opens it in a flash and with no problems....and

I

> stick it in a bowl that I can reach and just heat it up- its the type

that

> you don't even need to add water to .

> >

> > Try getting a bowl of soup to the table in a regular size bowl without

> spilling it on a scooter or even in a wheelchair or with a

cane..........

> nearly impossible.... so I use those bigger bowls.... like cool whip

> ones....... that way if it wants to splatter then so be it.......

> >

> > The rest of the evening is spent pretty much like the morning- one

thing I

> embarrassingly mention here- is using the restroom- I know it is not

good

> for anyone to " hold " it in but when it hurts so much to get from the

> scooter-cane-wheelchair and onto a ' toilet'...... one tends to put that

> matter off as long as possible.........

> >

> > My days are all like this......... and have been for 2 yrs or better

> now............ I had pains, leg cramps, spasms, bleeding, bruising easy

as

> I grew up too but never did anyone diagnose it with anything and now it

> makes sense.......

> >

> > Each day is the same as I've stated- but there is usually a surprise

or

> two- and those being-

> > looking down and seeing blood piles on the floor......... not really

> knowing where they came from.......... thinking they came from a cat -

> someone else getting hurt- and it isn't...... after checking the pets

out- I

> find out the blood is coming from me.

> >

> > I sometimes feel I need to wrap myself up in a bubble......... some

type

> of protective coating......... I am barely moving around due to pain yet

> somehow I get hurt each day.

> >

> > I had planned to make this a 3 day journal but there is nothing I

really

> can add here- everyday goes this way- with the exception of some new

'hurt'.

> and/or stress that makes my skin just bleed........

> >

> > I hope this helps give insight in how a person with VEDS lives in

Chronic

> pain........

> >

> >

> >

> >

> >

> >

> >

> >

> > God Bless And Hugs- Love Moon

> >

> >

[Guest guest]

TJ,

Well the lawyer sounds like he knows what he's doing! I am sure you will

win. Though I've heard it takes the judge a couple of months to decide. Is

that your understanding of it all. I'm here. Good luck with the hearing! I

hope it all goes well for you!

Hugs,

March 29 Journal- Moon- A Peek into the daily life of

Moon's

> World. Please Read ASAP and give me insights for lawyer

>

>

> >

> > Please Read ASAP and give me insights for lawyer

> >

> >

> > I know this is long guys- but this is what I plan to hand lawyer

tomorrow-

> do u see anything that needs editing? Thanks in Advance- TJ

> >

> >

> >

> > March 29-2004

> >

> > Tried to write a daily journal but hurts more to holding a pen seems

to be

> something I can only do in small spurts and cramps my hand/fingers,,

leaving

> the writing nearly unreadable- so decided to keep one on computer- that

way

> when the typing gets to be too much - I can hit save and finish it

> later..... and have it still be readable later.

> >

> > I went to bed at 12:00 p.m. last night- felt so miserable...dizzy,

> headache, you name it - it hurt.

> > Woke with a jolt at 4:00 a.m. with another pain streak. How can that

be

> with the amount of medicines I am on?

> >

> > It isn't time to take my medications yet. But I can take one of the

> breakthrough pain ones so am doing that and writing this while it gets

to

> work. Hoping it will be enough to hold out until 8 a.m. when I can take

the

> other meds to help with deeper pain.

> >

> > I figure taking a shower may help soothe the muscles/bones so attempt

to

> get morning shower done. What a chore this has become. Takes me so

long to

> do things anymore.

> >

> > Using a cane - I hobble around getting belongings-

> underwear-camisole-shirt-pants-nylons- towels-washcloth-shampoo etc. I

> place them in the wheelchair seat so I can roll it to be near the shower

for

> easier access when I am done in shower. I place the towels on top of it

> all. The shower has a small step over ledge and I have to remember

which

> foot to put up and over first due to left knee not bending.... actually

I

> end up getting in backwards. The ledge is not that big but seems huge

to me

> when I'm trying to get in the shower.

> >

> > I use a shower seat due to not being able to stand through the length

a

> shower would take- I am able then to put legs up on the little ledge

that is

> normally used for soap/shampoo etc. I use a showerhead with a hose .

After

> getting situated and getting water to the correct temperature- gotta

make

> sure its not too hot or too cold or more problems occur. Its nearly

> impossible to wash my hair without wincing . I couldn't even begin to

> guesstimate a length of time it takes me to shower.. and getting out -

dried

> off and dressed is another whole experience in itself. I reach to get

the

> towel while on the shower seat and do most of my drying off while in the

> shower stall. I can't place a towel around my hair -tuban fashion- as I

> used to- hurts too much to hold arms up that long so I just pat it as

dry as

> I can. Forget blowdryers- takes too much effort and am no longer able

to

> hold any item the time it would take for it to be of use anymore anyhow.

> After drying self as best as I can- I attempt to put my clothes on-

which is

> a pain even though I choose clothing without buttons/snaps/zippers. I

get

> the camisole on then sitting on the shower seat yet- because the one

knee

> doesnt bend properly I have to work my left foot through my underwear

and

> then put the right leg in which of course is pretty lifeless so takes

effort

> to get that leg in as well- same steps for nylons- only these take

forever

> but are a must medically- it is getting to a point though that one day I

> will no longer be able to do those either. I can't even describe the

amount

> of effort and time it takes to get those buggars on. They are support

hose

> and trying to get them on two painful legs using fingers that tend to

not

> bend the ways they need to bend in order to help pull them on and up is

yet

> another huge part of my day.

> >

> > When finally dressed- pull on shirt- pull on pants- its time to brush

> teeth. Making my way over to the sink by using the wheelchair for

balance -

> I turn the water on and try to get toothpaste on my toothbrush without

> getting frustrated enough to just say ' Forget it !'

> >

> > Again- trying to hold something small in my hand - the toothbrush- and

the

> toothpaste tube- my fingers are having a heck of a workout and creating

> nothing but pain for me. The toothpaste tube has become one of my worst

> enemies. I make a mental note - like thats going to be of much use-

with

> the fog that is in there , by the time I get to where my store list is-

I

> most likely won't remember it anyhow.- but I make a mental note to write

> down - toothpaste in pllastic stand up bottle. I work at getting

toothpaste

> out of the tube and onto the toothbrush.... its almost impossible- ugh-

its

> something so small yet causes me such big problems.. I even lay the

> toothbrush on the counter and try to lay the tube of toothpaste down so

that

> I can maybe work some toothpaste out by using both hands - pushing on

the

> tube to get some out... when even a mere amount is out- I go with it.

No

> sense of fighting with a toothpaste tube! All that strain for just a

little

> dab - how irritating... if it weren't for hygiene and health- I'd be

almost

> willing to pitch it in the trash and not bother with it anymore.

> >

> > Before leaving the ladies room, I try to get all that needs done done-

> takes too much effort going back and forth to have to return for some

little

> forgotten item. At this point with wet hair, I just leave it that way

to

> dry. I have problems using the ( toilet ) as it seems someone adjusts

it

> lower and lower each day.... How to get in the proper position with a

knee

> that doesn't bend and a leg that takes brain power to make go the right

way.

> I end up finally getting there but geesh what a lot of work just to go

to

> the bathroom.

> >

> > Its going to be a scooter day it appears-or at least until the

medications

> are able to make their way into my system at 8:00 a.m. - I crave a cup

of

> coffee - so use the scooter to get out to the kitchen. I use the cane

to

> get to the scooter and have to get in it just right ... if I get in it

on

> the wrong side, I end up having to get back up again and going to the

other

> side.... knee doesnt bend- I place the cane between my legs and hit the

> button to go out into the kitchen but can't reach the sink- ugh!

Another

> struggle to stand- get water- put the filter in the coffee pot- ever try

to

> get those filters to seperate without finger trouble? ha... its triple

the

> time trying with sore fingers- the scooter has a basket and I use a cup

that

> has a lid on it so I don't spill it- if I am using the scooter I put

the

> cup in the basket and then head to wherever I am going- if I use cane -

I

> don't spill it as easily - ok - some drips out - but only a small

amoount ?

> by holding cane and trying to walk with a cup of coffee.

> >

> > It still isn't time to take the pain meds and the breakthrough pain

med is

> not really helping yet ... but I figure if I rest for a while that maybe

the

> pain will lessen some. I decide to read some e-mail ... I can never

seem to

> get comfortable.... After about 15 minutes, I have to get up and move a

bit

> but cant stand for longer than a minute it seems before the pain

worsens.. I

> sit back down for a bit and of course during sitting time- its a matter

of

> deciding if it feels any better with legs up on a chair or down- its

> something I just keep trying to get comfy and with them up on the chair

it

> seems to help cut back on some of the swelling in my legs.

> >

> > Soon it will be time to get Dakota who is 11 up so he can get ready

for

> school. I have to keep myself occupied so that he isn't late. So I

keep

> going through the above measures until I hear the alarm clock go off.

> >

> > Finally- I managed to get through the time and get Dakota on the bus-

I go

> through such a sad spell after I see him leave on Mondays- as there is

an

> issue that has really wronged me but I basically have done all in my

power

> to change and get no where.

> >

> > I won't see him until Thursday night and only from the time school

gets

> out until 8 p.m. unless there is a half day of school- or no school- or

he

> comes down with some type of problem such as a belly ache etc.

> >

> > Stress really wears me out and makes me instant tired.... as if I

could

> fall asleep at the snap of a finger....... the boys arguing does that to

me

> as well but losing one child ( Kenny ) and then having to see Dakota

forced

> to live with Ken when its definitely unjustifiable really wears me . I

have

> taken my medications now and will finish my coffee and go back to bed.

> >

> > My head hurts, my stomach is nauseaus and I just all around hurt and

> really want to just cry where no one can see me.... I hate me

> sometimes........ hate the fact that there are so many - I can'ts in my

life

> now- but I try to keep my chin up and not focus on the what I can not do

any

> more- even though it takes much energy from me.

> >

> > I am off to lay down now- am feeling worse by the second- Good night.

> >

> > Never fails- the medications only seem to work for a small amount of

time-

> I can finally get to sleep and end up shooting out of bed with sharp

> pains...... never know where the pain is going to be...... sometimes its

> legs- sometimes its arms- sometimes its colitis/ulcer- sometimes its

severe

> headaches- just never know........ Doesn't really make a person look

> forward to waking up....... And as for pain shooting you out of bed-

talk

> about a complicated situation when you can't 'shoot' across the room to

try

> to walk off leg pain or cramp because your legs won't allow you to stand

for

> longer than a minute before it starts taking on severe pain as

> well.......... I almost feel like Im just doomed at this point.------- I

> reach around for the cane that I try to keep near me at all times- but

that

> thing is a danger sometimes by itself- it has fallen on me- etc........

if

> it were to hit me- it could cause severe problems too- just like when

that

> cell phone just barely knicked me. Can't believe all these thoughts run

> through my mind and I feel like I'm definitely not going to make it to

the

> restroom on time...... how can I? The pain is too high....... I am

finally

> in standing position but know if the floor has anything on it , like a

> little wad of paper or something the cat or kitten has played with and I

> happen to step on it I will be thrown out of balance......... not liking

> hospital stays too much- I tend to be careful......... with the use of

the

> cane I slide my shoes on......and begin to hobble to door- and then to

the

> rest room............. and barely and I do mean barely get there in

time.!

> >

> > The amigo is in the hall so I decide to get on it and make it to the

> office door where I can take another breakthrough pain reliever and

perhaps

> do some e-mail or a bit of web design to help ward of the pain level in

my

> mind......... it doesnt work........... so I decide to chat with a few

> friends for a little bit, but its gotten to a point that I really can't

last

> too long at that either....... I end up having to place legs/up down,

stand-

> sit...... its so frustrating.......... I want to be able to sit and do a

> website all in one sitting and I just cant do it any more! My fingers

will

> ache and make it maddening to even try to linger at the desk too

> long.........

> >

> > I feel constantly tired- but can not sleep as much as I really need

to. I

> look at the clock and realize - I haven't eaten and feel I better do so-

> especially with all the medications in me...... I can't eat before noon-

or

> I end up having an appointment with the toilet as my colitis and ulcer

are

> not agreeable for me to handle food before then. I get back on the

> scooter....... remembering to save time of standing/fussing by putting

legs

> in the right way the first time ( rarely do I get it right the first

time

> around ) ...... If is home - he will cook something like sizzle

steaks

> or hamburgers..... but when he isnt here - I end up going for something

> microwavable.

> >

> > It is very hard for me now to grasp anything out of the

freezer..........

> I can barely handle my hand being in there......... its sooooooo

> cold........ I hurridly pick a t.v. dinner or budget gourmet and slap it

on

> the counter - just barely missing the edge- encountnering yet another

almost

> mishap....... had it fallen, it could have hit me and yet another

> disaster.... but I cant hold on to the frozen dinner long enough to not

slap

> it on there as such as it is too cold and my fingers hurt from the way

you

> have to hold it........ I work at the task that most people can do in

five

> seconds of tearing off the box....... I can't guesstimate the amount of

time

> it takes me to get the box off and then peel off the plastic.........

> sometimes - I feel this isn't worth it and just leave it set there in

> frustration ...... and just go back to another room....... after I

finally

> get it all off- I stick the dinner in the cart of the scooter if it will

> fit......... if it doesnt- then on my lap.......... I do not care for

that

> idea too much....... Thank God the microwave is just at a height i can

push

> the button and throw it in and being digital there are really no buttons

to

> push but using thumb I turn it on for approx 12 minutes....... feeling

like

> I finally did accomplish something so minor to others but major to me- I

> head back to the office hoping to get some more e-mail done as I wait

for

> that t.v. dinner......... I am feeln dosey from the medications I

> guess......... barely able to keep my eyes open...... my back is

starting to

> hurt now too.....

> >

> > I look around the office and see a pile of bills that need paid- so

many

> things that need done and I want to accomplish........ I used to write

down

> a list of to do's and not stop until I had each thing crossed off......

> there is no way to do that now...... none at all......... I can not

tell

> one minute from the next if I will have the energy or how severe the

pain

> level will be to even try to accomplish all that needs to be done.

> >

> > I have finally got most of my bills payable online so that when due I

can

> just push a button and do it that way rather than try to grip a pen and

> write out a check....... but still- even though made somewhat easier, my

> eyelids get so heavy - depending on pain level and medication reaction

that

> sometimes I get to the url and thats about it ......... I no longer have

the

> power to do what I went to the url for.

> >

> > The buzzer goes off on the microwave........ " oh yeah- my

> dinner....... " -------- good thing it has a buzzer - or most likely I

would

> forget I even had stuck it in there . back on the scooter and out to

the

> kitchn...... grab a pot holder out of the microwave and put the plastic

> container on it and pray while its either in the basket or on my lap

that I

> will make it to the table without spilling it.... I sit at the kitchen

> table and look out the window - watching cars go by and missing the fact

> that I cant drive....... and also thinking about summer- hoping with the

> scooter- I will at least be able to get out there this summer for a

small

> ride and get some fresh air...... 2 years of being in a house can get

pretty

> drab!

> >

> > Most times I can't finish the dinner - so I stick it in the

refrigerator

> for later. ( On the amigo - of course ) Tad bit complicated to get the

> fridge door open/shut while placing that in there..... I try to get what

> items I will need - diet coke etc and place them in the basket and head

back

> to the office- still hoping to get through some e-mail or bills.........

but

> the muscle pain and leg pain, heck lets just say all over body pain is

too

> much to bear today and even with those medications..... I feel like I

have a

> foggy head and the meds are just not touching the pain. I give another

> shower another thought- so much work to do so though........ do I want

to do

> all that for that again? Most often not but I will anyhway with the

hopes

> that it makes me feel some better.

> >

> > Even sitting here - typing this, I almost can't keep at it...... I

have

> moved up down- feet up down- stand , sit- nod off.......... etc........

I am

> even wondering If I will get this done and I so badly want to - so its

> understandable what a day in the life of TJ is like. Its pretty much

> depressing and makes tears stream down my face at times to think about

all

> the stuff I used to do and no longer can do. Only thing that keeps me

going

> is thinking about how bad someone else is....... there are definitely

people

> worse off - yet I've went from hyperactive and hardly ever being home to

> basically being in this house from day to day........ outings consisting

of

> dr appointments and hearings......... I can't sweep- I cant vacuum- I

cant

> do laundry- I cant do dishes....... I can't even make my own bed......

> >

> > I give up- I am going to go lay down again.......... this is just too

much

> to handle........ maybe if I lie down again....... I can write some more

> later.

> >

> > Funny, even laying down isn't comfortable....... I can't stand a

blanket

> or sheet over my leg that has hardly any feeling......... which makes no

> sense to me- so I cover up best I can and try to think of good

> things......... my boys- my parents- Jesus- my friends that I have made

> online....... how would anyone get through 2 years of this without these

> people in their life? Just wish so badly I could do more- more for each

and

> everyone of them.......

> >

> > Sometimes the wheelchair seems the better way to go but it is such a

pain

> on my arms........ I really think someone needs to perfect those things,

> talk about uncomfortable.

> >

> > Great- Ive struggled to get into this bed and yet again, this time Im

> tired but can't sleep......... pain worsens if I lay here and can't

> sleep......... I gotta stop that........ I need to get back up and try

to do

> something to keep my mind off it.

> >

> > I hold back tears when I see the schoolbus go by and realize my baby

wont

> be coming home tonight....... he hates it when I call him baby , but he

is

> and always will be my baby. He can be such a handful yet it is so wrong

> that he was forced to live with Ken and all the pain from that memory

plus

> the fact that I am this ill and cant be with my own child? Just makes

me

> sick.......

> >

> > I do not get into watching t.v. since my son passed away in 1997 - its

> just too hard for me- as he and I had many favorites and I just can't

sit

> there and keep realizing he is not here- its too hard....... just too

> hard......... so I spend more time trying to make a memorial for him on

the

> web................ I look at the basket of yarn and wish I could

attempt

> crocheting again but things fly out of my fingers now as it is and I

realize

> crocheting would only cause me tremendous pain.......

> >

> > The room is starting to spin again and my eyes are droopy....... the

pain

> just never stops ughhhhh so irritating........ I watch the clock to see

when

> the next dose can go in and give me a bit more of a relief........ Once

> again I try to sit and do some e-mail and maybe get some sites started

or at

> least one photo uploaded....... I want so badly to spend time chatting

with

> the wonderful friends I have made and also to put some time into the

Online

> Ministry I built a while ago but I can't...... only for small

intervals.

> >

> > Saddens me that it makes most worry- but I can't console anyone by

being

> where I just cant be due to the pain level.........

> >

> > I read through some of the EDS groups and don't feel so alone as there

are

> others with the same symptoms and problems......... some can do more

than I

> , some are about the same as I. It does kinda bring some relief to mind

to

> know that there are others you can confide in and they are going to know

> what you mean.

> >

> > Supper time rolls around and I decide to try some soup- as my stomach

> doesnt feel it can handle much more than that..... I once again get on

the

> scooter and head to the kitchen......... but guess what? I can't open

it

> !!!!! Grrrrrrrrrrrrrrrr- it makes me so angry......... I holler up the

> steps for my 16 year old to come open the can so his mother can have

some

> soup. He , of course - opens it in a flash and with no problems....and

I

> stick it in a bowl that I can reach and just heat it up- its the type

that

> you don't even need to add water to .

> >

> > Try getting a bowl of soup to the table in a regular size bowl without

> spilling it on a scooter or even in a wheelchair or with a

cane..........

> nearly impossible.... so I use those bigger bowls.... like cool whip

> ones....... that way if it wants to splatter then so be it.......

> >

> > The rest of the evening is spent pretty much like the morning- one

thing I

> embarrassingly mention here- is using the restroom- I know it is not

good

> for anyone to " hold " it in but when it hurts so much to get from the

> scooter-cane-wheelchair and onto a ' toilet'...... one tends to put that

> matter off as long as possible.........

> >

> > My days are all like this......... and have been for 2 yrs or better

> now............ I had pains, leg cramps, spasms, bleeding, bruising easy

as

> I grew up too but never did anyone diagnose it with anything and now it

> makes sense.......

> >

> > Each day is the same as I've stated- but there is usually a surprise

or

> two- and those being-

> > looking down and seeing blood piles on the floor......... not really

> knowing where they came from.......... thinking they came from a cat -

> someone else getting hurt- and it isn't...... after checking the pets

out- I

> find out the blood is coming from me.

> >

> > I sometimes feel I need to wrap myself up in a bubble......... some

type

> of protective coating......... I am barely moving around due to pain yet

> somehow I get hurt each day.

> >

> > I had planned to make this a 3 day journal but there is nothing I

really

> can add here- everyday goes this way- with the exception of some new

'hurt'.

> and/or stress that makes my skin just bleed........

> >

> > I hope this helps give insight in how a person with VEDS lives in

Chronic

> pain........

> >

> >

> >

> >

> >

> >

> >

> >

> > God Bless And Hugs- Love Moon

> >

> >

[Guest guest]

Thanks - yep he seems like he knows what he is doing..... can't believe how

much time I wasted though......... At least , sharing it here- no one else will

waste time doing everything I did........

As for winning....... not too sure on that....... Guess whatever will be will be

on that note...... Will handle it either way........ Wouldn't mind getting out-

been housebound 2 yrs....... would most likely be rough- and I'd probably get

hurt but dang' - that kind of life sounds good to me ( getting out )

He said this Judge pretty much lets you know the day of the hearing.......

Depending on what mood he is in......... but yes- sometimes it can take anywhere

from 2 to 6 months........

Hugs TJ- and again, I apologize for sending that letter through to begin

with........ LOL- I not only wasted my time- I wasted all of yours........ Way

to gooooooooo TJ......... Maybe the doctor should give me more meds- gosh......

( am wondering if I would have sent something so stupid through here- had I not

been this medicated. )

Oh- P.S. The nail polish thing is not true....... Judges don't care whether you

wear it or not......... but they do prefer short nails to long ones.

God Bless And Hugs- Love Moon

March 29 Journal- Moon- A Peek into the daily life of

Moon's

> World. Please Read ASAP and give me insights for lawyer

>

>

> >

> > Please Read ASAP and give me insights for lawyer

> >

> >

> > I know this is long guys- but this is what I plan to hand lawyer

tomorrow-

> do u see anything that needs editing? Thanks in Advance- TJ

> >

> >

> >

> > March 29-2004

> >

> > Tried to write a daily journal but hurts more to holding a pen seems

to be

> something I can only do in small spurts and cramps my hand/fingers,,

leaving

> the writing nearly unreadable- so decided to keep one on computer- that

way

> when the typing gets to be too much - I can hit save and finish it

> later..... and have it still be readable later.

> >

> > I went to bed at 12:00 p.m. last night- felt so miserable...dizzy,

> headache, you name it - it hurt.

> > Woke with a jolt at 4:00 a.m. with another pain streak. How can that

be

> with the amount of medicines I am on?

> >

> > It isn't time to take my medications yet. But I can take one of the

> breakthrough pain ones so am doing that and writing this while it gets

to

> work. Hoping it will be enough to hold out until 8 a.m. when I can take

the

> other meds to help with deeper pain.

> >

> > I figure taking a shower may help soothe the muscles/bones so attempt

to

> get morning shower done. What a chore this has become. Takes me so

long to

> do things anymore.

> >

> > Using a cane - I hobble around getting belongings-

> underwear-camisole-shirt-pants-nylons- towels-washcloth-shampoo etc. I

> place them in the wheelchair seat so I can roll it to be near the shower

for

> easier access when I am done in shower. I place the towels on top of it

> all. The shower has a small step over ledge and I have to remember

which

> foot to put up and over first due to left knee not bending.... actually

I

> end up getting in backwards. The ledge is not that big but seems huge

to me

> when I'm trying to get in the shower.

> >

> > I use a shower seat due to not being able to stand through the length

a

> shower would take- I am able then to put legs up on the little ledge

that is

> normally used for soap/shampoo etc. I use a showerhead with a hose .

After

> getting situated and getting water to the correct temperature- gotta

make

> sure its not too hot or too cold or more problems occur. Its nearly

> impossible to wash my hair without wincing . I couldn't even begin to

> guesstimate a length of time it takes me to shower.. and getting out -

dried

> off and dressed is another whole experience in itself. I reach to get

the

> towel while on the shower seat and do most of my drying off while in the

> shower stall. I can't place a towel around my hair -tuban fashion- as I

> used to- hurts too much to hold arms up that long so I just pat it as

dry as

> I can. Forget blowdryers- takes too much effort and am no longer able

to

> hold any item the time it would take for it to be of use anymore anyhow.

> After drying self as best as I can- I attempt to put my clothes on-

which is

> a pain even though I choose clothing without buttons/snaps/zippers. I

get

> the camisole on then sitting on the shower seat yet- because the one

knee

> doesnt bend properly I have to work my left foot through my underwear

and

> then put the right leg in which of course is pretty lifeless so takes

effort

> to get that leg in as well- same steps for nylons- only these take

forever

> but are a must medically- it is getting to a point though that one day I

> will no longer be able to do those either. I can't even describe the

amount

> of effort and time it takes to get those buggars on. They are support

hose

> and trying to get them on two painful legs using fingers that tend to

not

> bend the ways they need to bend in order to help pull them on and up is

yet

> another huge part of my day.

> >

> > When finally dressed- pull on shirt- pull on pants- its time to brush

> teeth. Making my way over to the sink by using the wheelchair for

balance -

> I turn the water on and try to get toothpaste on my toothbrush without

> getting frustrated enough to just say ' Forget it !'

> >

> > Again- trying to hold something small in my hand - the toothbrush- and

the

> toothpaste tube- my fingers are having a heck of a workout and creating

> nothing but pain for me. The toothpaste tube has become one of my worst

> enemies. I make a mental note - like thats going to be of much use-

with

> the fog that is in there , by the time I get to where my store list is-

I

> most likely won't remember it anyhow.- but I make a mental note to write

> down - toothpaste in pllastic stand up bottle. I work at getting

toothpaste

> out of the tube and onto the toothbrush.... its almost impossible- ugh-

its

> something so small yet causes me such big problems.. I even lay the

> toothbrush on the counter and try to lay the tube of toothpaste down so

that

> I can maybe work some toothpaste out by using both hands - pushing on

the

> tube to get some out... when even a mere amount is out- I go with it.

No

> sense of fighting with a toothpaste tube! All that strain for just a

little

> dab - how irritating... if it weren't for hygiene and health- I'd be

almost

> willing to pitch it in the trash and not bother with it anymore.

> >

> > Before leaving the ladies room, I try to get all that needs done done-

> takes too much effort going back and forth to have to return for some

little

> forgotten item. At this point with wet hair, I just leave it that way

to

> dry. I have problems using the ( toilet ) as it seems someone adjusts

it

> lower and lower each day.... How to get in the proper position with a

knee

> that doesn't bend and a leg that takes brain power to make go the right

way.

> I end up finally getting there but geesh what a lot of work just to go

to

> the bathroom.

> >

> > Its going to be a scooter day it appears-or at least until the

medications

> are able to make their way into my system at 8:00 a.m. - I crave a cup

of

> coffee - so use the scooter to get out to the kitchen. I use the cane

to

> get to the scooter and have to get in it just right ... if I get in it

on

> the wrong side, I end up having to get back up again and going to the

other

> side.... knee doesnt bend- I place the cane between my legs and hit the

> button to go out into the kitchen but can't reach the sink- ugh!

Another

> struggle to stand- get water- put the filter in the coffee pot- ever try

to

> get those filters to seperate without finger trouble? ha... its triple

the

> time trying with sore fingers- the scooter has a basket and I use a cup

that

> has a lid on it so I don't spill it- if I am using the scooter I put

the

> cup in the basket and then head to wherever I am going- if I use cane -

I

> don't spill it as easily - ok - some drips out - but only a small

amoount ?

> by holding cane and trying to walk with a cup of coffee.

> >

> > It still isn't time to take the pain meds and the breakthrough pain

med is

> not really helping yet ... but I figure if I rest for a while that maybe

the

> pain will lessen some. I decide to read some e-mail ... I can never

seem to

> get comfortable.... After about 15 minutes, I have to get up and move a

bit

> but cant stand for longer than a minute it seems before the pain

worsens.. I

> sit back down for a bit and of course during sitting time- its a matter

of

> deciding if it feels any better with legs up on a chair or down- its

> something I just keep trying to get comfy and with them up on the chair

it

> seems to help cut back on some of the swelling in my legs.

> >

> > Soon it will be time to get Dakota who is 11 up so he can get ready

for

> school. I have to keep myself occupied so that he isn't late. So I

keep

> going through the above measures until I hear the alarm clock go off.

> >

> > Finally- I managed to get through the time and get Dakota on the bus-

I go

> through such a sad spell after I see him leave on Mondays- as there is

an

> issue that has really wronged me but I basically have done all in my

power

> to change and get no where.

> >

> > I won't see him until Thursday night and only from the time school

gets

> out until 8 p.m. unless there is a half day of school- or no school- or

he

> comes down with some type of problem such as a belly ache etc.

> >

> > Stress really wears me out and makes me instant tired.... as if I

could

> fall asleep at the snap of a finger....... the boys arguing does that to

me

> as well but losing one child ( Kenny ) and then having to see Dakota

forced

> to live with Ken when its definitely unjustifiable really wears me . I

have

> taken my medications now and will finish my coffee and go back to bed.

> >

> > My head hurts, my stomach is nauseaus and I just all around hurt and

> really want to just cry where no one can see me.... I hate me

> sometimes........ hate the fact that there are so many - I can'ts in my

life

> now- but I try to keep my chin up and not focus on the what I can not do

any

> more- even though it takes much energy from me.

> >

> > I am off to lay down now- am feeling worse by the second- Good night.

> >

> > Never fails- the medications only seem to work for a small amount of

time-

> I can finally get to sleep and end up shooting out of bed with sharp

> pains...... never know where the pain is going to be...... sometimes its

> legs- sometimes its arms- sometimes its colitis/ulcer- sometimes its

severe

> headaches- just never know........ Doesn't really make a person look

> forward to waking up....... And as for pain shooting you out of bed-

talk

> about a complicated situation when you can't 'shoot' across the room to

try

> to walk off leg pain or cramp because your legs won't allow you to stand

for

> longer than a minute before it starts taking on severe pain as

> well.......... I almost feel like Im just doomed at this point.------- I

> reach around for the cane that I try to keep near me at all times- but

that

> thing is a danger sometimes by itself- it has fallen on me- etc........

if

> it were to hit me- it could cause severe problems too- just like when

that

> cell phone just barely knicked me. Can't believe all these thoughts run

> through my mind and I feel like I'm definitely not going to make it to

the

> restroom on time...... how can I? The pain is too high....... I am

finally

> in standing position but know if the floor has anything on it , like a

> little wad of paper or something the cat or kitten has played with and I

> happen to step on it I will be thrown out of balance......... not liking

> hospital stays too much- I tend to be careful......... with the use of

the

> cane I slide my shoes on......and begin to hobble to door- and then to

the

> rest room............. and barely and I do mean barely get there in

time.!

> >

> > The amigo is in the hall so I decide to get on it and make it to the

> office door where I can take another breakthrough pain reliever and

perhaps

> do some e-mail or a bit of web design to help ward of the pain level in

my

> mind......... it doesnt work........... so I decide to chat with a few

> friends for a little bit, but its gotten to a point that I really can't

last

> too long at that either....... I end up having to place legs/up down,

stand-

> sit...... its so frustrating.......... I want to be able to sit and do a

> website all in one sitting and I just cant do it any more! My fingers

will

> ache and make it maddening to even try to linger at the desk too

> long.........

> >

> > I feel constantly tired- but can not sleep as much as I really need

to. I

> look at the clock and realize - I haven't eaten and feel I better do so-

> especially with all the medications in me...... I can't eat before noon-

or

> I end up having an appointment with the toilet as my colitis and ulcer

are

> not agreeable for me to handle food before then. I get back on the

> scooter....... remembering to save time of standing/fussing by putting

legs

> in the right way the first time ( rarely do I get it right the first

time

> around ) ...... If is home - he will cook something like sizzle

steaks

> or hamburgers..... but when he isnt here - I end up going for something

> microwavable.

> >

> > It is very hard for me now to grasp anything out of the

freezer..........

> I can barely handle my hand being in there......... its sooooooo

> cold........ I hurridly pick a t.v. dinner or budget gourmet and slap it

on

> the counter - just barely missing the edge- encountnering yet another

almost

> mishap....... had it fallen, it could have hit me and yet another

> disaster.... but I cant hold on to the frozen dinner long enough to not

slap

> it on there as such as it is too cold and my fingers hurt from the way

you

> have to hold it........ I work at the task that most people can do in

five

> seconds of tearing off the box....... I can't guesstimate the amount of

time

> it takes me to get the box off and then peel off the plastic.........

> sometimes - I feel this isn't worth it and just leave it set there in

> frustration ...... and just go back to another room....... after I

finally

> get it all off- I stick the dinner in the cart of the scooter if it will

> fit......... if it doesnt- then on my lap.......... I do not care for

that

> idea too much....... Thank God the microwave is just at a height i can

push

> the button and throw it in and being digital there are really no buttons

to

> push but using thumb I turn it on for approx 12 minutes....... feeling

like

> I finally did accomplish something so minor to others but major to me- I

> head back to the office hoping to get some more e-mail done as I wait

for

> that t.v. dinner......... I am feeln dosey from the medications I

> guess......... barely able to keep my eyes open...... my back is

starting to

> hurt now too.....

> >

> > I look around the office and see a pile of bills that need paid- so

many

> things that need done and I want to accomplish........ I used to write

down

> a list of to do's and not stop until I had each thing crossed off......

> there is no way to do that now...... none at all......... I can not

tell

> one minute from the next if I will have the energy or how severe the

pain

> level will be to even try to accomplish all that needs to be done.

> >

> > I have finally got most of my bills payable online so that when due I

can

> just push a button and do it that way rather than try to grip a pen and

> write out a check....... but still- even though made somewhat easier, my

> eyelids get so heavy - depending on pain level and medication reaction

that

> sometimes I get to the url and thats about it ......... I no longer have

the

> power to do what I went to the url for.

> >

> > The buzzer goes off on the microwave........ " oh yeah- my

> dinner....... " -------- good thing it has a buzzer - or most likely I

would

> forget I even had stuck it in there . back on the scooter and out to

the

> kitchn...... grab a pot holder out of the microwave and put the plastic

> container on it and pray while its either in the basket or on my lap

that I

> will make it to the table without spilling it.... I sit at the kitchen

> table and look out the window - watching cars go by and missing the fact

> that I cant drive....... and also thinking about summer- hoping with the

> scooter- I will at least be able to get out there this summer for a

small

> ride and get some fresh air...... 2 years of being in a house can get

pretty

> drab!

> >

> > Most times I can't finish the dinner - so I stick it in the

refrigerator

> for later. ( On the amigo - of course ) Tad bit complicated to get the

> fridge door open/shut while placing that in there..... I try to get what

> items I will need - diet coke etc and place them in the basket and head

back

> to the office- still hoping to get through some e-mail or bills.........

but

> the muscle pain and leg pain, heck lets just say all over body pain is

too

> much to bear today and even with those medications..... I feel like I

have a

> foggy head and the meds are just not touching the pain. I give another

> shower another thought- so much work to do so though........ do I want

to do

> all that for that again? Most often not but I will anyhway with the

hopes

> that it makes me feel some better.

> >

> > Even sitting here - typing this, I almost can't keep at it...... I

have

> moved up down- feet up down- stand , sit- nod off.......... etc........

I am

> even wondering If I will get this done and I so badly want to - so its

> understandable what a day in the life of TJ is like. Its pretty much

> depressing and makes tears stream down my face at times to think about

all

> the stuff I used to do and no longer can do. Only thing that keeps me

going

> is thinking about how bad someone else is....... there are definitely

people

> worse off - yet I've went from hyperactive and hardly ever being home to

> basically being in this house from day to day........ outings consisting

of

> dr appointments and hearings......... I can't sweep- I cant vacuum- I

cant

> do laundry- I cant do dishes....... I can't even make my own bed......

> >

> > I give up- I am going to go lay down again.......... this is just too

much

> to handle........ maybe if I lie down again....... I can write some more

> later.

> >

> > Funny, even laying down isn't comfortable....... I can't stand a

blanket

> or sheet over my leg that has hardly any feeling......... which makes no

> sense to me- so I cover up best I can and try to think of good

> things......... my boys- my parents- Jesus- my friends that I have made

> online....... how would anyone get through 2 years of this without these

> people in their life? Just wish so badly I could do more- more for each

and

> everyone of them.......

> >

> > Sometimes the wheelchair seems the better way to go but it is such a

pain

> on my arms........ I really think someone needs to perfect those things,

> talk about uncomfortable.

> >

> > Great- Ive struggled to get into this bed and yet again, this time Im

> tired but can't sleep......... pain worsens if I lay here and can't

> sleep......... I gotta stop that........ I need to get back up and try

to do

> something to keep my mind off it.

> >

> > I hold back tears when I see the schoolbus go by and realize my baby

wont

> be coming home tonight....... he hates it when I call him baby , but he

is

> and always will be my baby. He can be such a handful yet it is so wrong

> that he was forced to live with Ken and all the pain from that memory

plus

> the fact that I am this ill and cant be with my own child? Just makes

me

> sick.......

> >

> > I do not get into watching t.v. since my son passed away in 1997 - its

> just too hard for me- as he and I had many favorites and I just can't

sit

> there and keep realizing he is not here- its too hard....... just too

> hard......... so I spend more time trying to make a memorial for him on

the

> web................ I look at the basket of yarn and wish I could

attempt

> crocheting again but things fly out of my fingers now as it is and I

realize

> crocheting would only cause me tremendous pain.......

> >

> > The room is starting to spin again and my eyes are droopy....... the

pain

> just never stops ughhhhh so irritating........ I watch the clock to see

when

> the next dose can go in and give me a bit more of a relief........ Once

> again I try to sit and do some e-mail and maybe get some sites started

or at

> least one photo uploaded....... I want so badly to spend time chatting

with

> the wonderful friends I have made and also to put some time into the

Online

> Ministry I built a while ago but I can't...... only for small

intervals.

> >

> > Saddens me that it makes most worry- but I can't console anyone by

being

> where I just cant be due to the pain level.........

> >

> > I read through some of the EDS groups and don't feel so alone as there

are

> others with the same symptoms and problems......... some can do more

than I

> , some are about the same as I. It does kinda bring some relief to mind

to

> know that there are others you can confide in and they are going to know

> what you mean.

> >

> > Supper time rolls around and I decide to try some soup- as my stomach

> doesnt feel it can handle much more than that..... I once again get on

the

> scooter and head to the kitchen......... but guess what? I can't open

it

> !!!!! Grrrrrrrrrrrrrrrr- it makes me so angry......... I holler up the

> steps for my 16 year old to come open the can so his mother can have

some

> soup. He , of course - opens it in a flash and with no problems....and

I

> stick it in a bowl that I can reach and just heat it up- its the type

that

> you don't even need to add water to .

> >

> > Try getting a bowl of soup to the table in a regular size bowl without

> spilling it on a scooter or even in a wheelchair or with a

cane..........

> nearly impossible.... so I use those bigger bowls.... like cool whip

> ones....... that way if it wants to splatter then so be it.......

> >

> > The rest of the evening is spent pretty much like the morning- one

thing I

> embarrassingly mention here- is using the restroom- I know it is not

good

> for anyone to " hold " it in but when it hurts so much to get from the

> scooter-cane-wheelchair and onto a ' toilet'...... one tends to put that

> matter off as long as possible.........

> >

> > My days are all like this......... and have been for 2 yrs or better

> now............ I had pains, leg cramps, spasms, bleeding, bruising easy

as

> I grew up too but never did anyone diagnose it with anything and now it

> makes sense.......

> >

> > Each day is the same as I've stated- but there is usually a surprise

or

> two- and those being-

> > looking down and seeing blood piles on the floor......... not really

> knowing where they came from.......... thinking they came from a cat -

> someone else getting hurt- and it isn't...... after checking the pets

out- I

> find out the blood is coming from me.

> >

> > I sometimes feel I need to wrap myself up in a bubble......... some

type

> of protective coating......... I am barely moving around due to pain yet

> somehow I get hurt each day.

> >

> > I had planned to make this a 3 day journal but there is nothing I

really

> can add here- everyday goes this way- with the exception of some new

'hurt'.

> and/or stress that makes my skin just bleed........

> >

> > I hope this helps give insight in how a person with VEDS lives in

Chronic

> pain........

> >

> >

> >

> >

> >

> >

> >

> >

> > God Bless And Hugs- Love Moon

> >

> >

[Guest guest]

Thanks - yep he seems like he knows what he is doing..... can't believe how

much time I wasted though......... At least , sharing it here- no one else will

waste time doing everything I did........

As for winning....... not too sure on that....... Guess whatever will be will be

on that note...... Will handle it either way........ Wouldn't mind getting out-

been housebound 2 yrs....... would most likely be rough- and I'd probably get

hurt but dang' - that kind of life sounds good to me ( getting out )

He said this Judge pretty much lets you know the day of the hearing.......

Depending on what mood he is in......... but yes- sometimes it can take anywhere

from 2 to 6 months........

Hugs TJ- and again, I apologize for sending that letter through to begin

with........ LOL- I not only wasted my time- I wasted all of yours........ Way

to gooooooooo TJ......... Maybe the doctor should give me more meds- gosh......

( am wondering if I would have sent something so stupid through here- had I not

been this medicated. )

Oh- P.S. The nail polish thing is not true....... Judges don't care whether you

wear it or not......... but they do prefer short nails to long ones.

God Bless And Hugs- Love Moon

March 29 Journal- Moon- A Peek into the daily life of

Moon's

> World. Please Read ASAP and give me insights for lawyer

>

>

> >

> > Please Read ASAP and give me insights for lawyer

> >

> >

> > I know this is long guys- but this is what I plan to hand lawyer

tomorrow-

> do u see anything that needs editing? Thanks in Advance- TJ

> >

> >

> >

> > March 29-2004

> >

> > Tried to write a daily journal but hurts more to holding a pen seems

to be

> something I can only do in small spurts and cramps my hand/fingers,,

leaving

> the writing nearly unreadable- so decided to keep one on computer- that

way

> when the typing gets to be too much - I can hit save and finish it

> later..... and have it still be readable later.

> >

> > I went to bed at 12:00 p.m. last night- felt so miserable...dizzy,

> headache, you name it - it hurt.

> > Woke with a jolt at 4:00 a.m. with another pain streak. How can that

be

> with the amount of medicines I am on?

> >

> > It isn't time to take my medications yet. But I can take one of the

> breakthrough pain ones so am doing that and writing this while it gets

to

> work. Hoping it will be enough to hold out until 8 a.m. when I can take

the

> other meds to help with deeper pain.

> >

> > I figure taking a shower may help soothe the muscles/bones so attempt

to

> get morning shower done. What a chore this has become. Takes me so

long to

> do things anymore.

> >

> > Using a cane - I hobble around getting belongings-

> underwear-camisole-shirt-pants-nylons- towels-washcloth-shampoo etc. I

> place them in the wheelchair seat so I can roll it to be near the shower

for

> easier access when I am done in shower. I place the towels on top of it

> all. The shower has a small step over ledge and I have to remember

which

> foot to put up and over first due to left knee not bending.... actually

I

> end up getting in backwards. The ledge is not that big but seems huge

to me

> when I'm trying to get in the shower.

> >

> > I use a shower seat due to not being able to stand through the length

a

> shower would take- I am able then to put legs up on the little ledge

that is

> normally used for soap/shampoo etc. I use a showerhead with a hose .

After

> getting situated and getting water to the correct temperature- gotta

make

> sure its not too hot or too cold or more problems occur. Its nearly

> impossible to wash my hair without wincing . I couldn't even begin to

> guesstimate a length of time it takes me to shower.. and getting out -

dried

> off and dressed is another whole experience in itself. I reach to get

the

> towel while on the shower seat and do most of my drying off while in the

> shower stall. I can't place a towel around my hair -tuban fashion- as I

> used to- hurts too much to hold arms up that long so I just pat it as

dry as

> I can. Forget blowdryers- takes too much effort and am no longer able

to

> hold any item the time it would take for it to be of use anymore anyhow.

> After drying self as best as I can- I attempt to put my clothes on-

which is

> a pain even though I choose clothing without buttons/snaps/zippers. I

get

> the camisole on then sitting on the shower seat yet- because the one

knee

> doesnt bend properly I have to work my left foot through my underwear

and

> then put the right leg in which of course is pretty lifeless so takes

effort

> to get that leg in as well- same steps for nylons- only these take

forever

> but are a must medically- it is getting to a point though that one day I

> will no longer be able to do those either. I can't even describe the

amount

> of effort and time it takes to get those buggars on. They are support

hose

> and trying to get them on two painful legs using fingers that tend to

not

> bend the ways they need to bend in order to help pull them on and up is

yet

> another huge part of my day.

> >

> > When finally dressed- pull on shirt- pull on pants- its time to brush

> teeth. Making my way over to the sink by using the wheelchair for

balance -

> I turn the water on and try to get toothpaste on my toothbrush without

> getting frustrated enough to just say ' Forget it !'

> >

> > Again- trying to hold something small in my hand - the toothbrush- and

the

> toothpaste tube- my fingers are having a heck of a workout and creating

> nothing but pain for me. The toothpaste tube has become one of my worst

> enemies. I make a mental note - like thats going to be of much use-

with

> the fog that is in there , by the time I get to where my store list is-

I

> most likely won't remember it anyhow.- but I make a mental note to write

> down - toothpaste in pllastic stand up bottle. I work at getting

toothpaste

> out of the tube and onto the toothbrush.... its almost impossible- ugh-

its

> something so small yet causes me such big problems.. I even lay the

> toothbrush on the counter and try to lay the tube of toothpaste down so

that

> I can maybe work some toothpaste out by using both hands - pushing on

the

> tube to get some out... when even a mere amount is out- I go with it.

No

> sense of fighting with a toothpaste tube! All that strain for just a

little

> dab - how irritating... if it weren't for hygiene and health- I'd be

almost

> willing to pitch it in the trash and not bother with it anymore.

> >

> > Before leaving the ladies room, I try to get all that needs done done-

> takes too much effort going back and forth to have to return for some

little

> forgotten item. At this point with wet hair, I just leave it that way

to

> dry. I have problems using the ( toilet ) as it seems someone adjusts

it

> lower and lower each day.... How to get in the proper position with a

knee

> that doesn't bend and a leg that takes brain power to make go the right

way.

> I end up finally getting there but geesh what a lot of work just to go

to

> the bathroom.

> >

> > Its going to be a scooter day it appears-or at least until the

medications

> are able to make their way into my system at 8:00 a.m. - I crave a cup

of

> coffee - so use the scooter to get out to the kitchen. I use the cane

to

> get to the scooter and have to get in it just right ... if I get in it

on

> the wrong side, I end up having to get back up again and going to the

other

> side.... knee doesnt bend- I place the cane between my legs and hit the

> button to go out into the kitchen but can't reach the sink- ugh!

Another

> struggle to stand- get water- put the filter in the coffee pot- ever try

to

> get those filters to seperate without finger trouble? ha... its triple

the

> time trying with sore fingers- the scooter has a basket and I use a cup

that

> has a lid on it so I don't spill it- if I am using the scooter I put

the

> cup in the basket and then head to wherever I am going- if I use cane -

I

> don't spill it as easily - ok - some drips out - but only a small

amoount ?

> by holding cane and trying to walk with a cup of coffee.

> >

> > It still isn't time to take the pain meds and the breakthrough pain

med is

> not really helping yet ... but I figure if I rest for a while that maybe

the

> pain will lessen some. I decide to read some e-mail ... I can never

seem to

> get comfortable.... After about 15 minutes, I have to get up and move a

bit

> but cant stand for longer than a minute it seems before the pain

worsens.. I

> sit back down for a bit and of course during sitting time- its a matter

of

> deciding if it feels any better with legs up on a chair or down- its

> something I just keep trying to get comfy and with them up on the chair

it

> seems to help cut back on some of the swelling in my legs.

> >

> > Soon it will be time to get Dakota who is 11 up so he can get ready

for

> school. I have to keep myself occupied so that he isn't late. So I

keep

> going through the above measures until I hear the alarm clock go off.

> >

> > Finally- I managed to get through the time and get Dakota on the bus-

I go

> through such a sad spell after I see him leave on Mondays- as there is

an

> issue that has really wronged me but I basically have done all in my

power

> to change and get no where.

> >

> > I won't see him until Thursday night and only from the time school

gets

> out until 8 p.m. unless there is a half day of school- or no school- or

he

> comes down with some type of problem such as a belly ache etc.

> >

> > Stress really wears me out and makes me instant tired.... as if I

could

> fall asleep at the snap of a finger....... the boys arguing does that to

me

> as well but losing one child ( Kenny ) and then having to see Dakota

forced

> to live with Ken when its definitely unjustifiable really wears me . I

have

> taken my medications now and will finish my coffee and go back to bed.

> >

> > My head hurts, my stomach is nauseaus and I just all around hurt and

> really want to just cry where no one can see me.... I hate me

> sometimes........ hate the fact that there are so many - I can'ts in my

life

> now- but I try to keep my chin up and not focus on the what I can not do

any

> more- even though it takes much energy from me.

> >

> > I am off to lay down now- am feeling worse by the second- Good night.

> >

> > Never fails- the medications only seem to work for a small amount of

time-

> I can finally get to sleep and end up shooting out of bed with sharp

> pains...... never know where the pain is going to be...... sometimes its

> legs- sometimes its arms- sometimes its colitis/ulcer- sometimes its

severe

> headaches- just never know........ Doesn't really make a person look

> forward to waking up....... And as for pain shooting you out of bed-

talk

> about a complicated situation when you can't 'shoot' across the room to

try

> to walk off leg pain or cramp because your legs won't allow you to stand

for

> longer than a minute before it starts taking on severe pain as

> well.......... I almost feel like Im just doomed at this point.------- I

> reach around for the cane that I try to keep near me at all times- but

that

> thing is a danger sometimes by itself- it has fallen on me- etc........

if

> it were to hit me- it could cause severe problems too- just like when

that

> cell phone just barely knicked me. Can't believe all these thoughts run

> through my mind and I feel like I'm definitely not going to make it to

the

> restroom on time...... how can I? The pain is too high....... I am

finally

> in standing position but know if the floor has anything on it , like a

> little wad of paper or something the cat or kitten has played with and I

> happen to step on it I will be thrown out of balance......... not liking

> hospital stays too much- I tend to be careful......... with the use of

the

> cane I slide my shoes on......and begin to hobble to door- and then to

the

> rest room............. and barely and I do mean barely get there in

time.!

> >

> > The amigo is in the hall so I decide to get on it and make it to the

> office door where I can take another breakthrough pain reliever and

perhaps

> do some e-mail or a bit of web design to help ward of the pain level in

my

> mind......... it doesnt work........... so I decide to chat with a few

> friends for a little bit, but its gotten to a point that I really can't

last

> too long at that either....... I end up having to place legs/up down,

stand-

> sit...... its so frustrating.......... I want to be able to sit and do a

> website all in one sitting and I just cant do it any more! My fingers

will

> ache and make it maddening to even try to linger at the desk too

> long.........

> >

> > I feel constantly tired- but can not sleep as much as I really need

to. I

> look at the clock and realize - I haven't eaten and feel I better do so-

> especially with all the medications in me...... I can't eat before noon-

or

> I end up having an appointment with the toilet as my colitis and ulcer

are

> not agreeable for me to handle food before then. I get back on the

> scooter....... remembering to save time of standing/fussing by putting

legs

> in the right way the first time ( rarely do I get it right the first

time

> around ) ...... If is home - he will cook something like sizzle

steaks

> or hamburgers..... but when he isnt here - I end up going for something

> microwavable.

> >

> > It is very hard for me now to grasp anything out of the

freezer..........

> I can barely handle my hand being in there......... its sooooooo

> cold........ I hurridly pick a t.v. dinner or budget gourmet and slap it

on

> the counter - just barely missing the edge- encountnering yet another

almost

> mishap....... had it fallen, it could have hit me and yet another

> disaster.... but I cant hold on to the frozen dinner long enough to not

slap

> it on there as such as it is too cold and my fingers hurt from the way

you

> have to hold it........ I work at the task that most people can do in

five

> seconds of tearing off the box....... I can't guesstimate the amount of

time

> it takes me to get the box off and then peel off the plastic.........

> sometimes - I feel this isn't worth it and just leave it set there in

> frustration ...... and just go back to another room....... after I

finally

> get it all off- I stick the dinner in the cart of the scooter if it will

> fit......... if it doesnt- then on my lap.......... I do not care for

that

> idea too much....... Thank God the microwave is just at a height i can

push

> the button and throw it in and being digital there are really no buttons

to

> push but using thumb I turn it on for approx 12 minutes....... feeling

like

> I finally did accomplish something so minor to others but major to me- I

> head back to the office hoping to get some more e-mail done as I wait

for

> that t.v. dinner......... I am feeln dosey from the medications I

> guess......... barely able to keep my eyes open...... my back is

starting to

> hurt now too.....

> >

> > I look around the office and see a pile of bills that need paid- so

many

> things that need done and I want to accomplish........ I used to write

down

> a list of to do's and not stop until I had each thing crossed off......

> there is no way to do that now...... none at all......... I can not

tell

> one minute from the next if I will have the energy or how severe the

pain

> level will be to even try to accomplish all that needs to be done.

> >

> > I have finally got most of my bills payable online so that when due I

can

> just push a button and do it that way rather than try to grip a pen and

> write out a check....... but still- even though made somewhat easier, my

> eyelids get so heavy - depending on pain level and medication reaction

that

> sometimes I get to the url and thats about it ......... I no longer have

the

> power to do what I went to the url for.

> >

> > The buzzer goes off on the microwave........ " oh yeah- my

> dinner....... " -------- good thing it has a buzzer - or most likely I

would

> forget I even had stuck it in there . back on the scooter and out to

the

> kitchn...... grab a pot holder out of the microwave and put the plastic

> container on it and pray while its either in the basket or on my lap

that I

> will make it to the table without spilling it.... I sit at the kitchen

> table and look out the window - watching cars go by and missing the fact

> that I cant drive....... and also thinking about summer- hoping with the

> scooter- I will at least be able to get out there this summer for a

small

> ride and get some fresh air...... 2 years of being in a house can get

pretty

> drab!

> >

> > Most times I can't finish the dinner - so I stick it in the

refrigerator

> for later. ( On the amigo - of course ) Tad bit complicated to get the

> fridge door open/shut while placing that in there..... I try to get what

> items I will need - diet coke etc and place them in the basket and head

back

> to the office- still hoping to get through some e-mail or bills.........

but

> the muscle pain and leg pain, heck lets just say all over body pain is

too

> much to bear today and even with those medications..... I feel like I

have a

> foggy head and the meds are just not touching the pain. I give another

> shower another thought- so much work to do so though........ do I want

to do

> all that for that again? Most often not but I will anyhway with the

hopes

> that it makes me feel some better.

> >

> > Even sitting here - typing this, I almost can't keep at it...... I

have

> moved up down- feet up down- stand , sit- nod off.......... etc........

I am

> even wondering If I will get this done and I so badly want to - so its

> understandable what a day in the life of TJ is like. Its pretty much

> depressing and makes tears stream down my face at times to think about

all

> the stuff I used to do and no longer can do. Only thing that keeps me

going

> is thinking about how bad someone else is....... there are definitely

people

> worse off - yet I've went from hyperactive and hardly ever being home to

> basically being in this house from day to day........ outings consisting

of

> dr appointments and hearings......... I can't sweep- I cant vacuum- I

cant

> do laundry- I cant do dishes....... I can't even make my own bed......

> >

> > I give up- I am going to go lay down again.......... this is just too

much

> to handle........ maybe if I lie down again....... I can write some more

> later.

> >

> > Funny, even laying down isn't comfortable....... I can't stand a

blanket

> or sheet over my leg that has hardly any feeling......... which makes no

> sense to me- so I cover up best I can and try to think of good

> things......... my boys- my parents- Jesus- my friends that I have made

> online....... how would anyone get through 2 years of this without these

> people in their life? Just wish so badly I could do more- more for each

and

> everyone of them.......

> >

> > Sometimes the wheelchair seems the better way to go but it is such a

pain

> on my arms........ I really think someone needs to perfect those things,

> talk about uncomfortable.

> >

> > Great- Ive struggled to get into this bed and yet again, this time Im

> tired but can't sleep......... pain worsens if I lay here and can't

> sleep......... I gotta stop that........ I need to get back up and try

to do

> something to keep my mind off it.

> >

> > I hold back tears when I see the schoolbus go by and realize my baby

wont

> be coming home tonight....... he hates it when I call him baby , but he

is

> and always will be my baby. He can be such a handful yet it is so wrong

> that he was forced to live with Ken and all the pain from that memory

plus

> the fact that I am this ill and cant be with my own child? Just makes

me

> sick.......

> >

> > I do not get into watching t.v. since my son passed away in 1997 - its

> just too hard for me- as he and I had many favorites and I just can't

sit

> there and keep realizing he is not here- its too hard....... just too

> hard......... so I spend more time trying to make a memorial for him on

the

> web................ I look at the basket of yarn and wish I could

attempt

> crocheting again but things fly out of my fingers now as it is and I

realize

> crocheting would only cause me tremendous pain.......

> >

> > The room is starting to spin again and my eyes are droopy....... the

pain

> just never stops ughhhhh so irritating........ I watch the clock to see

when

> the next dose can go in and give me a bit more of a relief........ Once

> again I try to sit and do some e-mail and maybe get some sites started

or at

> least one photo uploaded....... I want so badly to spend time chatting

with

> the wonderful friends I have made and also to put some time into the

Online

> Ministry I built a while ago but I can't...... only for small

intervals.

> >

> > Saddens me that it makes most worry- but I can't console anyone by

being

> where I just cant be due to the pain level.........

> >

> > I read through some of the EDS groups and don't feel so alone as there

are

> others with the same symptoms and problems......... some can do more

than I

> , some are about the same as I. It does kinda bring some relief to mind

to

> know that there are others you can confide in and they are going to know

> what you mean.

> >

> > Supper time rolls around and I decide to try some soup- as my stomach

> doesnt feel it can handle much more than that..... I once again get on

the

> scooter and head to the kitchen......... but guess what? I can't open

it

> !!!!! Grrrrrrrrrrrrrrrr- it makes me so angry......... I holler up the

> steps for my 16 year old to come open the can so his mother can have

some

> soup. He , of course - opens it in a flash and with no problems....and

I

> stick it in a bowl that I can reach and just heat it up- its the type

that

> you don't even need to add water to .

> >

> > Try getting a bowl of soup to the table in a regular size bowl without

> spilling it on a scooter or even in a wheelchair or with a

cane..........

> nearly impossible.... so I use those bigger bowls.... like cool whip

> ones....... that way if it wants to splatter then so be it.......

> >

> > The rest of the evening is spent pretty much like the morning- one

thing I

> embarrassingly mention here- is using the restroom- I know it is not

good

> for anyone to " hold " it in but when it hurts so much to get from the

> scooter-cane-wheelchair and onto a ' toilet'...... one tends to put that

> matter off as long as possible.........

> >

> > My days are all like this......... and have been for 2 yrs or better

> now............ I had pains, leg cramps, spasms, bleeding, bruising easy

as

> I grew up too but never did anyone diagnose it with anything and now it

> makes sense.......

> >

> > Each day is the same as I've stated- but there is usually a surprise

or

> two- and those being-

> > looking down and seeing blood piles on the floor......... not really

> knowing where they came from.......... thinking they came from a cat -

> someone else getting hurt- and it isn't...... after checking the pets

out- I

> find out the blood is coming from me.

> >

> > I sometimes feel I need to wrap myself up in a bubble......... some

type

> of protective coating......... I am barely moving around due to pain yet

> somehow I get hurt each day.

> >

> > I had planned to make this a 3 day journal but there is nothing I

really

> can add here- everyday goes this way- with the exception of some new

'hurt'.

> and/or stress that makes my skin just bleed........

> >

> > I hope this helps give insight in how a person with VEDS lives in

Chronic

> pain........

> >

> >

> >

> >

> >

> >

> >

> >

> > God Bless And Hugs- Love Moon

> >

> >

[Guest guest]

Hey TJ,

I don't know what you mean by wasted time? Take your scooter when you go to

court, the thing you ride on. You haven't wasted my time! The letter was

good, dig it out and save it for future reference if needed. I do hope the

judge will let you know his decision promptly rather than waiting more

agonizing months Well good about the nails. You are going to get it! I feel

it!

Hugs,

March 29 Journal- Moon- A Peek into the daily life

of

> Moon's

> > World. Please Read ASAP and give me insights for lawyer

> >

> >

> > >

> > > Please Read ASAP and give me insights for lawyer

> > >

> > >

> > > I know this is long guys- but this is what I plan to hand lawyer

> tomorrow-

> > do u see anything that needs editing? Thanks in Advance- TJ

> > >

> > >

> > >

> > > March 29-2004

> > >

> > > Tried to write a daily journal but hurts more to holding a pen

seems

> to be

> > something I can only do in small spurts and cramps my hand/fingers,,

> leaving

> > the writing nearly unreadable- so decided to keep one on computer-

that

> way

> > when the typing gets to be too much - I can hit save and finish it

> > later..... and have it still be readable later.

> > >

> > > I went to bed at 12:00 p.m. last night- felt so miserable...dizzy,

> > headache, you name it - it hurt.

> > > Woke with a jolt at 4:00 a.m. with another pain streak. How can

that

> be

> > with the amount of medicines I am on?

> > >

> > > It isn't time to take my medications yet. But I can take one of

the

> > breakthrough pain ones so am doing that and writing this while it

gets

> to

> > work. Hoping it will be enough to hold out until 8 a.m. when I can

take

> the

> > other meds to help with deeper pain.

> > >

> > > I figure taking a shower may help soothe the muscles/bones so

attempt

> to

> > get morning shower done. What a chore this has become. Takes me so

> long to

> > do things anymore.

> > >

> > > Using a cane - I hobble around getting belongings-

> > underwear-camisole-shirt-pants-nylons- towels-washcloth-shampoo etc.

I

> > place them in the wheelchair seat so I can roll it to be near the

shower

> for

> > easier access when I am done in shower. I place the towels on top

of it

> > all. The shower has a small step over ledge and I have to remember

> which

> > foot to put up and over first due to left knee not bending....

actually

> I

> > end up getting in backwards. The ledge is not that big but seems

huge

> to me

> > when I'm trying to get in the shower.

> > >

> > > I use a shower seat due to not being able to stand through the

length

> a

> > shower would take- I am able then to put legs up on the little ledge

> that is

> > normally used for soap/shampoo etc. I use a showerhead with a hose

..

> After

> > getting situated and getting water to the correct temperature- gotta

> make

> > sure its not too hot or too cold or more problems occur. Its nearly

> > impossible to wash my hair without wincing . I couldn't even begin

to

> > guesstimate a length of time it takes me to shower.. and getting

out -

> dried

> > off and dressed is another whole experience in itself. I reach to

get

> the

> > towel while on the shower seat and do most of my drying off while in

the

> > shower stall. I can't place a towel around my hair -tuban fashion-

as I

> > used to- hurts too much to hold arms up that long so I just pat it

as

> dry as

> > I can. Forget blowdryers- takes too much effort and am no longer

able

> to

> > hold any item the time it would take for it to be of use anymore

anyhow.

> > After drying self as best as I can- I attempt to put my clothes on-

> which is

> > a pain even though I choose clothing without buttons/snaps/zippers.

I

> get

> > the camisole on then sitting on the shower seat yet- because the one

> knee

> > doesnt bend properly I have to work my left foot through my

underwear

> and

> > then put the right leg in which of course is pretty lifeless so

takes

> effort

> > to get that leg in as well- same steps for nylons- only these take

> forever

> > but are a must medically- it is getting to a point though that one

day I

> > will no longer be able to do those either. I can't even describe

the

> amount

> > of effort and time it takes to get those buggars on. They are

support

> hose

> > and trying to get them on two painful legs using fingers that tend

to

> not

> > bend the ways they need to bend in order to help pull them on and up

is

> yet

> > another huge part of my day.

> > >

> > > When finally dressed- pull on shirt- pull on pants- its time to

brush

> > teeth. Making my way over to the sink by using the wheelchair for

> balance -

> > I turn the water on and try to get toothpaste on my toothbrush

without

> > getting frustrated enough to just say ' Forget it !'

> > >

> > > Again- trying to hold something small in my hand - the toothbrush-

and

> the

> > toothpaste tube- my fingers are having a heck of a workout and

creating

> > nothing but pain for me. The toothpaste tube has become one of my

worst

> > enemies. I make a mental note - like thats going to be of much

use-

> with

> > the fog that is in there , by the time I get to where my store list

is-

> I

> > most likely won't remember it anyhow.- but I make a mental note to

write

> > down - toothpaste in pllastic stand up bottle. I work at getting

> toothpaste

> > out of the tube and onto the toothbrush.... its almost impossible-

ugh-

> its

> > something so small yet causes me such big problems.. I even lay the

> > toothbrush on the counter and try to lay the tube of toothpaste down

so

> that

> > I can maybe work some toothpaste out by using both hands - pushing

on

> the

> > tube to get some out... when even a mere amount is out- I go with

it.

> No

> > sense of fighting with a toothpaste tube! All that strain for just

a

> little

> > dab - how irritating... if it weren't for hygiene and health- I'd

be

> almost

> > willing to pitch it in the trash and not bother with it anymore.

> > >

> > > Before leaving the ladies room, I try to get all that needs done

done-

> > takes too much effort going back and forth to have to return for

some

> little

> > forgotten item. At this point with wet hair, I just leave it that

way

> to

> > dry. I have problems using the ( toilet ) as it seems someone

adjusts

> it

> > lower and lower each day.... How to get in the proper position with

a

> knee

> > that doesn't bend and a leg that takes brain power to make go the

right

> way.

> > I end up finally getting there but geesh what a lot of work just to

go

> to

> > the bathroom.

> > >

> > > Its going to be a scooter day it appears-or at least until the

> medications

> > are able to make their way into my system at 8:00 a.m. - I crave a

cup

> of

> > coffee - so use the scooter to get out to the kitchen. I use the

cane

> to

> > get to the scooter and have to get in it just right ... if I get in

it

> on

> > the wrong side, I end up having to get back up again and going to

the

> other

> > side.... knee doesnt bend- I place the cane between my legs and hit

the

> > button to go out into the kitchen but can't reach the sink- ugh!

> Another

> > struggle to stand- get water- put the filter in the coffee pot- ever

try

> to

> > get those filters to seperate without finger trouble? ha... its

triple

> the

> > time trying with sore fingers- the scooter has a basket and I use a

cup

> that

> > has a lid on it so I don't spill it- if I am using the scooter I

put

> the

> > cup in the basket and then head to wherever I am going- if I use

cane -

> I

> > don't spill it as easily - ok - some drips out - but only a small

> amoount ?

> > by holding cane and trying to walk with a cup of coffee.

> > >

> > > It still isn't time to take the pain meds and the breakthrough

pain

> med is

> > not really helping yet ... but I figure if I rest for a while that

maybe

> the

> > pain will lessen some. I decide to read some e-mail ... I can never

> seem to

> > get comfortable.... After about 15 minutes, I have to get up and

move a

> bit

> > but cant stand for longer than a minute it seems before the pain

> worsens.. I

> > sit back down for a bit and of course during sitting time- its a

matter

> of

> > deciding if it feels any better with legs up on a chair or down- its

> > something I just keep trying to get comfy and with them up on the

chair

> it

> > seems to help cut back on some of the swelling in my legs.

> > >

> > > Soon it will be time to get Dakota who is 11 up so he can get

ready

> for

> > school. I have to keep myself occupied so that he isn't late. So I

> keep

> > going through the above measures until I hear the alarm clock go

off.

> > >

> > > Finally- I managed to get through the time and get Dakota on the

bus-

> I go

> > through such a sad spell after I see him leave on Mondays- as there

is

> an

> > issue that has really wronged me but I basically have done all in my

> power

> > to change and get no where.

> > >

> > > I won't see him until Thursday night and only from the time school

> gets

> > out until 8 p.m. unless there is a half day of school- or no

school- or

> he

> > comes down with some type of problem such as a belly ache etc.

> > >

> > > Stress really wears me out and makes me instant tired.... as if I

> could

> > fall asleep at the snap of a finger....... the boys arguing does

that to

> me

> > as well but losing one child ( Kenny ) and then having to see Dakota

> forced

> > to live with Ken when its definitely unjustifiable really wears me .

I

> have

> > taken my medications now and will finish my coffee and go back to

bed.

> > >

> > > My head hurts, my stomach is nauseaus and I just all around hurt

and

> > really want to just cry where no one can see me.... I hate me

> > sometimes........ hate the fact that there are so many - I can'ts in

my

> life

> > now- but I try to keep my chin up and not focus on the what I can

not do

> any

> > more- even though it takes much energy from me.

> > >

> > > I am off to lay down now- am feeling worse by the second- Good

night.

> > >

> > > Never fails- the medications only seem to work for a small amount

of

> time-

> > I can finally get to sleep and end up shooting out of bed with sharp

> > pains...... never know where the pain is going to be...... sometimes

its

> > legs- sometimes its arms- sometimes its colitis/ulcer- sometimes its

> severe

> > headaches- just never know........ Doesn't really make a person

look

> > forward to waking up....... And as for pain shooting you out of bed-

> talk

> > about a complicated situation when you can't 'shoot' across the room

to

> try

> > to walk off leg pain or cramp because your legs won't allow you to

stand

> for

> > longer than a minute before it starts taking on severe pain as

> > well.......... I almost feel like Im just doomed at this

point.------- I

> > reach around for the cane that I try to keep near me at all times-

but

> that

> > thing is a danger sometimes by itself- it has fallen on me-

etc........

> if

> > it were to hit me- it could cause severe problems too- just like

when

> that

> > cell phone just barely knicked me. Can't believe all these thoughts

run

> > through my mind and I feel like I'm definitely not going to make it

to

> the

> > restroom on time...... how can I? The pain is too high....... I am

> finally

> > in standing position but know if the floor has anything on it , like

a

> > little wad of paper or something the cat or kitten has played with

and I

> > happen to step on it I will be thrown out of balance......... not

liking

> > hospital stays too much- I tend to be careful......... with the use

of

> the

> > cane I slide my shoes on......and begin to hobble to door- and then

to

> the

> > rest room............. and barely and I do mean barely get there in

> time.!

> > >

> > > The amigo is in the hall so I decide to get on it and make it to

the

> > office door where I can take another breakthrough pain reliever and

> perhaps

> > do some e-mail or a bit of web design to help ward of the pain level

in

> my

> > mind......... it doesnt work........... so I decide to chat with a

few

> > friends for a little bit, but its gotten to a point that I really

can't

> last

> > too long at that either....... I end up having to place legs/up

down,

> stand-

> > sit...... its so frustrating.......... I want to be able to sit and

do a

> > website all in one sitting and I just cant do it any more! My

fingers

> will

> > ache and make it maddening to even try to linger at the desk too

> > long.........

> > >

> > > I feel constantly tired- but can not sleep as much as I really

need

> to. I

> > look at the clock and realize - I haven't eaten and feel I better do

so-

> > especially with all the medications in me...... I can't eat before

noon-

> or

> > I end up having an appointment with the toilet as my colitis and

ulcer

> are

> > not agreeable for me to handle food before then. I get back on the

> > scooter....... remembering to save time of standing/fussing by

putting

> legs

> > in the right way the first time ( rarely do I get it right the first

> time

> > around ) ...... If is home - he will cook something like

sizzle

> steaks

> > or hamburgers..... but when he isnt here - I end up going for

something

> > microwavable.

> > >

> > > It is very hard for me now to grasp anything out of the

> freezer..........

> > I can barely handle my hand being in there......... its sooooooo

> > cold........ I hurridly pick a t.v. dinner or budget gourmet and

slap it

> on

> > the counter - just barely missing the edge- encountnering yet

another

> almost

> > mishap....... had it fallen, it could have hit me and yet another

> > disaster.... but I cant hold on to the frozen dinner long enough to

not

> slap

> > it on there as such as it is too cold and my fingers hurt from the

way

> you

> > have to hold it........ I work at the task that most people can do

in

> five

> > seconds of tearing off the box....... I can't guesstimate the amount

of

> time

> > it takes me to get the box off and then peel off the

plastic.........

> > sometimes - I feel this isn't worth it and just leave it set there

in

> > frustration ...... and just go back to another room....... after I

> finally

> > get it all off- I stick the dinner in the cart of the scooter if it

will

> > fit......... if it doesnt- then on my lap.......... I do not care

for

> that

> > idea too much....... Thank God the microwave is just at a height i

can

> push

> > the button and throw it in and being digital there are really no

buttons

> to

> > push but using thumb I turn it on for approx 12 minutes.......

feeling

> like

> > I finally did accomplish something so minor to others but major to

me- I

> > head back to the office hoping to get some more e-mail done as I

wait

> for

> > that t.v. dinner......... I am feeln dosey from the medications I

> > guess......... barely able to keep my eyes open...... my back is

> starting to

> > hurt now too.....

> > >

> > > I look around the office and see a pile of bills that need paid-

so

> many

> > things that need done and I want to accomplish........ I used to

write

> down

> > a list of to do's and not stop until I had each thing crossed

off......

> > there is no way to do that now...... none at all......... I can not

> tell

> > one minute from the next if I will have the energy or how severe the

> pain

> > level will be to even try to accomplish all that needs to be done.

> > >

> > > I have finally got most of my bills payable online so that when

due I

> can

> > just push a button and do it that way rather than try to grip a pen

and

> > write out a check....... but still- even though made somewhat

easier, my

> > eyelids get so heavy - depending on pain level and medication

reaction

> that

> > sometimes I get to the url and thats about it ......... I no longer

have

> the

> > power to do what I went to the url for.

> > >

> > > The buzzer goes off on the microwave........ " oh yeah- my

> > dinner....... " -------- good thing it has a buzzer - or most likely I

> would

> > forget I even had stuck it in there . back on the scooter and out

to

> the

> > kitchn...... grab a pot holder out of the microwave and put the

plastic

> > container on it and pray while its either in the basket or on my lap

> that I

> > will make it to the table without spilling it.... I sit at the

kitchen

> > table and look out the window - watching cars go by and missing the

fact

> > that I cant drive....... and also thinking about summer- hoping with

the

> > scooter- I will at least be able to get out there this summer for a

> small

> > ride and get some fresh air...... 2 years of being in a house can

get

> pretty

> > drab!

> > >

> > > Most times I can't finish the dinner - so I stick it in the

> refrigerator

> > for later. ( On the amigo - of course ) Tad bit complicated to get

the

> > fridge door open/shut while placing that in there..... I try to get

what

> > items I will need - diet coke etc and place them in the basket and

head

> back

> > to the office- still hoping to get through some e-mail or

bills.........

> but

> > the muscle pain and leg pain, heck lets just say all over body pain

is

> too

> > much to bear today and even with those medications..... I feel like

I

> have a

> > foggy head and the meds are just not touching the pain. I give

another

> > shower another thought- so much work to do so though........ do I

want

> to do

> > all that for that again? Most often not but I will anyhway with the

> hopes

> > that it makes me feel some better.

> > >

> > > Even sitting here - typing this, I almost can't keep at it...... I

> have

> > moved up down- feet up down- stand , sit- nod off..........

etc........

> I am

> > even wondering If I will get this done and I so badly want to - so

its

> > understandable what a day in the life of TJ is like. Its pretty

much

> > depressing and makes tears stream down my face at times to think

about

> all

> > the stuff I used to do and no longer can do. Only thing that keeps

me

> going

> > is thinking about how bad someone else is....... there are

definitely

> people

> > worse off - yet I've went from hyperactive and hardly ever being

home to

> > basically being in this house from day to day........ outings

consisting

> of

> > dr appointments and hearings......... I can't sweep- I cant vacuum-

I

> cant

> > do laundry- I cant do dishes....... I can't even make my own

bed......

> > >

> > > I give up- I am going to go lay down again.......... this is just

too

> much

> > to handle........ maybe if I lie down again....... I can write some

more

> > later.

> > >

> > > Funny, even laying down isn't comfortable....... I can't stand a

> blanket

> > or sheet over my leg that has hardly any feeling......... which

makes no

> > sense to me- so I cover up best I can and try to think of good

> > things......... my boys- my parents- Jesus- my friends that I have

made

> > online....... how would anyone get through 2 years of this without

these

> > people in their life? Just wish so badly I could do more- more for

each

> and

> > everyone of them.......

> > >

> > > Sometimes the wheelchair seems the better way to go but it is such

a

> pain

> > on my arms........ I really think someone needs to perfect those

things,

> > talk about uncomfortable.

> > >

> > > Great- Ive struggled to get into this bed and yet again, this time

Im

> > tired but can't sleep......... pain worsens if I lay here and can't

> > sleep......... I gotta stop that........ I need to get back up and

try

> to do

> > something to keep my mind off it.

> > >

> > > I hold back tears when I see the schoolbus go by and realize my

baby

> wont

> > be coming home tonight....... he hates it when I call him baby , but

he

> is

> > and always will be my baby. He can be such a handful yet it is so

wrong

> > that he was forced to live with Ken and all the pain from that

memory

> plus

> > the fact that I am this ill and cant be with my own child? Just

makes

> me

> > sick.......

> > >

> > > I do not get into watching t.v. since my son passed away in 1997 -

its

> > just too hard for me- as he and I had many favorites and I just

can't

> sit

> > there and keep realizing he is not here- its too hard....... just

too

> > hard......... so I spend more time trying to make a memorial for him

on

> the

> > web................ I look at the basket of yarn and wish I could

> attempt

> > crocheting again but things fly out of my fingers now as it is and I

> realize

> > crocheting would only cause me tremendous pain.......

> > >

> > > The room is starting to spin again and my eyes are droopy.......

the

> pain

> > just never stops ughhhhh so irritating........ I watch the clock to

see

> when

> > the next dose can go in and give me a bit more of a relief........

Once

> > again I try to sit and do some e-mail and maybe get some sites

started

> or at

> > least one photo uploaded....... I want so badly to spend time

chatting

> with

> > the wonderful friends I have made and also to put some time into the

> Online

> > Ministry I built a while ago but I can't...... only for small

> intervals.

> > >

> > > Saddens me that it makes most worry- but I can't console anyone by

> being

> > where I just cant be due to the pain level.........

> > >

> > > I read through some of the EDS groups and don't feel so alone as

there

> are

> > others with the same symptoms and problems......... some can do more

> than I

> > , some are about the same as I. It does kinda bring some relief to

mind

> to

> > know that there are others you can confide in and they are going to

know

> > what you mean.

> > >

> > > Supper time rolls around and I decide to try some soup- as my

stomach

> > doesnt feel it can handle much more than that..... I once again get

on

> the

> > scooter and head to the kitchen......... but guess what? I can't

open

> it

> > !!!!! Grrrrrrrrrrrrrrrr- it makes me so angry......... I holler up

the

> > steps for my 16 year old to come open the can so his mother can have

> some

> > soup. He , of course - opens it in a flash and with no

problems....and

> I

> > stick it in a bowl that I can reach and just heat it up- its the

type

> that

> > you don't even need to add water to .

> > >

> > > Try getting a bowl of soup to the table in a regular size bowl

without

> > spilling it on a scooter or even in a wheelchair or with a

> cane..........

> > nearly impossible.... so I use those bigger bowls.... like cool whip

> > ones....... that way if it wants to splatter then so be it.......

> > >

> > > The rest of the evening is spent pretty much like the morning- one

> thing I

> > embarrassingly mention here- is using the restroom- I know it is not

> good

> > for anyone to " hold " it in but when it hurts so much to get from the

> > scooter-cane-wheelchair and onto a ' toilet'...... one tends to put

that

> > matter off as long as possible.........

> > >

> > > My days are all like this......... and have been for 2 yrs or

better

> > now............ I had pains, leg cramps, spasms, bleeding, bruising

easy

> as

> > I grew up too but never did anyone diagnose it with anything and now

it

> > makes sense.......

> > >

> > > Each day is the same as I've stated- but there is usually a

surprise

> or

> > two- and those being-

> > > looking down and seeing blood piles on the floor......... not

really

> > knowing where they came from.......... thinking they came from a

cat -

> > someone else getting hurt- and it isn't...... after checking the

pets

> out- I

> > find out the blood is coming from me.

> > >

> > > I sometimes feel I need to wrap myself up in a bubble.........

some

> type

> > of protective coating......... I am barely moving around due to pain

yet

> > somehow I get hurt each day.

> > >

> > > I had planned to make this a 3 day journal but there is nothing I

> really

> > can add here- everyday goes this way- with the exception of some new

> 'hurt'.

> > and/or stress that makes my skin just bleed........

> > >

> > > I hope this helps give insight in how a person with VEDS lives in

> Chronic

> > pain........

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > God Bless And Hugs- Love Moon

> > >

> > >

[Guest guest]

-

The scooter is a bit too heavy to haul around so will be taking my

wheelchair....... Lawyer said either would be fine......... to tell you the

truth- I'm still kind of dangerous on that scooter..... mercy- I might hit the

Judge...... LOL

I prefer to forget that letter- it was a waste of time and has no value for any

future references....... Its a depressant- that doesn't help with

anything....... and I'd rather look for the good than the bad....... so- Im sure

its in archives but it is no where here and I tore it up and it made me

feeeeeeeel so good to tear it to shreds.

Hugs- TJ

Hey TJ,

I don't know what you mean by wasted time? Take your scooter when you go to

court, the thing you ride on. You haven't wasted my time! The letter was

good, dig it out and save it for future reference if needed. I do hope the

judge will let you know his decision promptly rather than waiting more

agonizing months Well good about the nails. You are going to get it! I feel

it!

Hugs,

March 29 Journal- Moon- A Peek into the daily life

of

> Moon's

> > World. Please Read ASAP and give me insights for lawyer

> >

> >

> > >

> > > Please Read ASAP and give me insights for lawyer

> > >

> > >

> > > I know this is long guys- but this is what I plan to hand lawyer

> tomorrow-

> > do u see anything that needs editing? Thanks in Advance- TJ

> > >

> > >

> > >

> > > March 29-2004

> > >

> > > Tried to write a daily journal but hurts more to holding a pen

seems

> to be

> > something I can only do in small spurts and cramps my hand/fingers,,

> leaving

> > the writing nearly unreadable- so decided to keep one on computer-

that

> way

> > when the typing gets to be too much - I can hit save and finish it

> > later..... and have it still be readable later.

> > >

> > > I went to bed at 12:00 p.m. last night- felt so miserable...dizzy,

> > headache, you name it - it hurt.

> > > Woke with a jolt at 4:00 a.m. with another pain streak. How can

that

> be

> > with the amount of medicines I am on?

> > >

> > > It isn't time to take my medications yet. But I can take one of

the

> > breakthrough pain ones so am doing that and writing this while it

gets

> to

> > work. Hoping it will be enough to hold out until 8 a.m. when I can

take

> the

> > other meds to help with deeper pain.

> > >

> > > I figure taking a shower may help soothe the muscles/bones so

attempt

> to

> > get morning shower done. What a chore this has become. Takes me so

> long to

> > do things anymore.

> > >

> > > Using a cane - I hobble around getting belongings-

> > underwear-camisole-shirt-pants-nylons- towels-washcloth-shampoo etc.

I

> > place them in the wheelchair seat so I can roll it to be near the

shower

> for

> > easier access when I am done in shower. I place the towels on top

of it

> > all. The shower has a small step over ledge and I have to remember

> which

> > foot to put up and over first due to left knee not bending....

actually

> I

> > end up getting in backwards. The ledge is not that big but seems

huge

> to me

> > when I'm trying to get in the shower.

> > >

> > > I use a shower seat due to not being able to stand through the

length

> a

> > shower would take- I am able then to put legs up on the little ledge

> that is

> > normally used for soap/shampoo etc. I use a showerhead with a hose

.

> After

> > getting situated and getting water to the correct temperature- gotta

> make

> > sure its not too hot or too cold or more problems occur. Its nearly

> > impossible to wash my hair without wincing . I couldn't even begin

to

> > guesstimate a length of time it takes me to shower.. and getting

out -

> dried

> > off and dressed is another whole experience in itself. I reach to

get

> the

> > towel while on the shower seat and do most of my drying off while in

the

> > shower stall. I can't place a towel around my hair -tuban fashion-

as I

> > used to- hurts too much to hold arms up that long so I just pat it

as

> dry as

> > I can. Forget blowdryers- takes too much effort and am no longer

able

> to

> > hold any item the time it would take for it to be of use anymore

anyhow.

> > After drying self as best as I can- I attempt to put my clothes on-

> which is

> > a pain even though I choose clothing without buttons/snaps/zippers.

I

> get

> > the camisole on then sitting on the shower seat yet- because the one

> knee

> > doesnt bend properly I have to work my left foot through my

underwear

> and

> > then put the right leg in which of course is pretty lifeless so

takes

> effort

> > to get that leg in as well- same steps for nylons- only these take

> forever

> > but are a must medically- it is getting to a point though that one

day I

> > will no longer be able to do those either. I can't even describe

the

> amount

> > of effort and time it takes to get those buggars on. They are

support

> hose

> > and trying to get them on two painful legs using fingers that tend

to

> not

> > bend the ways they need to bend in order to help pull them on and up

is

> yet

> > another huge part of my day.

> > >

> > > When finally dressed- pull on shirt- pull on pants- its time to

brush

> > teeth. Making my way over to the sink by using the wheelchair for

> balance -

> > I turn the water on and try to get toothpaste on my toothbrush

without

> > getting frustrated enough to just say ' Forget it !'

> > >

> > > Again- trying to hold something small in my hand - the toothbrush-

and

> the

> > toothpaste tube- my fingers are having a heck of a workout and

creating

> > nothing but pain for me. The toothpaste tube has become one of my

worst

> > enemies. I make a mental note - like thats going to be of much

use-

> with

> > the fog that is in there , by the time I get to where my store list

is-

> I

> > most likely won't remember it anyhow.- but I make a mental note to

write

> > down - toothpaste in pllastic stand up bottle. I work at getting

> toothpaste

> > out of the tube and onto the toothbrush.... its almost impossible-

ugh-

> its

> > something so small yet causes me such big problems.. I even lay the

> > toothbrush on the counter and try to lay the tube of toothpaste down

so

> that

> > I can maybe work some toothpaste out by using both hands - pushing

on

> the

> > tube to get some out... when even a mere amount is out- I go with

it.

> No

> > sense of fighting with a toothpaste tube! All that strain for just

a

> little

> > dab - how irritating... if it weren't for hygiene and health- I'd

be

> almost

> > willing to pitch it in the trash and not bother with it anymore.

> > >

> > > Before leaving the ladies room, I try to get all that needs done

done-

> > takes too much effort going back and forth to have to return for

some

> little

> > forgotten item. At this point with wet hair, I just leave it that

way

> to

> > dry. I have problems using the ( toilet ) as it seems someone

adjusts

> it

> > lower and lower each day.... How to get in the proper position with

a

> knee

> > that doesn't bend and a leg that takes brain power to make go the

right

> way.

> > I end up finally getting there but geesh what a lot of work just to

go

> to

> > the bathroom.

> > >

> > > Its going to be a scooter day it appears-or at least until the

> medications

> > are able to make their way into my system at 8:00 a.m. - I crave a

cup

> of

> > coffee - so use the scooter to get out to the kitchen. I use the

cane

> to

> > get to the scooter and have to get in it just right ... if I get in

it

> on

> > the wrong side, I end up having to get back up again and going to

the

> other

> > side.... knee doesnt bend- I place the cane between my legs and hit

the

> > button to go out into the kitchen but can't reach the sink- ugh!

> Another

> > struggle to stand- get water- put the filter in the coffee pot- ever

try

> to

> > get those filters to seperate without finger trouble? ha... its

triple

> the

> > time trying with sore fingers- the scooter has a basket and I use a

cup

> that

> > has a lid on it so I don't spill it- if I am using the scooter I

put

> the

> > cup in the basket and then head to wherever I am going- if I use

cane -

> I

> > don't spill it as easily - ok - some drips out - but only a small

> amoount ?

> > by holding cane and trying to walk with a cup of coffee.

> > >

> > > It still isn't time to take the pain meds and the breakthrough

pain

> med is

> > not really helping yet ... but I figure if I rest for a while that

maybe

> the

> > pain will lessen some. I decide to read some e-mail ... I can never

> seem to

> > get comfortable.... After about 15 minutes, I have to get up and

move a

> bit

> > but cant stand for longer than a minute it seems before the pain

> worsens.. I

> > sit back down for a bit and of course during sitting time- its a

matter

> of

> > deciding if it feels any better with legs up on a chair or down- its

> > something I just keep trying to get comfy and with them up on the

chair

> it

> > seems to help cut back on some of the swelling in my legs.

> > >

> > > Soon it will be time to get Dakota who is 11 up so he can get

ready

> for

> > school. I have to keep myself occupied so that he isn't late. So I

> keep

> > going through the above measures until I hear the alarm clock go

off.

> > >

> > > Finally- I managed to get through the time and get Dakota on the

bus-

> I go

> > through such a sad spell after I see him leave on Mondays- as there

is

> an

> > issue that has really wronged me but I basically have done all in my

> power

> > to change and get no where.

> > >

> > > I won't see him until Thursday night and only from the time school

> gets

> > out until 8 p.m. unless there is a half day of school- or no

school- or

> he

> > comes down with some type of problem such as a belly ache etc.

> > >

> > > Stress really wears me out and makes me instant tired.... as if I

> could

> > fall asleep at the snap of a finger....... the boys arguing does

that to

> me

> > as well but losing one child ( Kenny ) and then having to see Dakota

> forced

> > to live with Ken when its definitely unjustifiable really wears me .

I

> have

> > taken my medications now and will finish my coffee and go back to

bed.

> > >

> > > My head hurts, my stomach is nauseaus and I just all around hurt

and

> > really want to just cry where no one can see me.... I hate me

> > sometimes........ hate the fact that there are so many - I can'ts in

my

> life

> > now- but I try to keep my chin up and not focus on the what I can

not do

> any

> > more- even though it takes much energy from me.

> > >

> > > I am off to lay down now- am feeling worse by the second- Good

night.

> > >

> > > Never fails- the medications only seem to work for a small amount

of

> time-

> > I can finally get to sleep and end up shooting out of bed with sharp

> > pains...... never know where the pain is going to be...... sometimes

its

> > legs- sometimes its arms- sometimes its colitis/ulcer- sometimes its

> severe

> > headaches- just never know........ Doesn't really make a person

look

> > forward to waking up....... And as for pain shooting you out of bed-

> talk

> > about a complicated situation when you can't 'shoot' across the room

to

> try

> > to walk off leg pain or cramp because your legs won't allow you to

stand

> for

> > longer than a minute before it starts taking on severe pain as

> > well.......... I almost feel like Im just doomed at this

point.------- I

> > reach around for the cane that I try to keep near me at all times-

but

> that

> > thing is a danger sometimes by itself- it has fallen on me-

etc........

> if

> > it were to hit me- it could cause severe problems too- just like

when

> that

> > cell phone just barely knicked me. Can't believe all these thoughts

run

> > through my mind and I feel like I'm definitely not going to make it

to

> the

> > restroom on time...... how can I? The pain is too high....... I am

> finally

> > in standing position but know if the floor has anything on it , like

a

> > little wad of paper or something the cat or kitten has played with

and I

> > happen to step on it I will be thrown out of balance......... not

liking

> > hospital stays too much- I tend to be careful......... with the use

of

> the

> > cane I slide my shoes on......and begin to hobble to door- and then

to

> the

> > rest room............. and barely and I do mean barely get there in

> time.!

> > >

> > > The amigo is in the hall so I decide to get on it and make it to

the

> > office door where I can take another breakthrough pain reliever and

> perhaps

> > do some e-mail or a bit of web design to help ward of the pain level

in

> my

> > mind......... it doesnt work........... so I decide to chat with a

few

> > friends for a little bit, but its gotten to a point that I really

can't

> last

> > too long at that either....... I end up having to place legs/up

down,

> stand-

> > sit...... its so frustrating.......... I want to be able to sit and

do a

> > website all in one sitting and I just cant do it any more! My

fingers

> will

> > ache and make it maddening to even try to linger at the desk too

> > long.........

> > >

> > > I feel constantly tired- but can not sleep as much as I really

need

> to. I

> > look at the clock and realize - I haven't eaten and feel I better do

so-

> > especially with all the medications in me...... I can't eat before

noon-

> or

> > I end up having an appointment with the toilet as my colitis and

ulcer

> are

> > not agreeable for me to handle food before then. I get back on the

> > scooter....... remembering to save time of standing/fussing by

putting

> legs

> > in the right way the first time ( rarely do I get it right the first

> time

> > around ) ...... If is home - he will cook something like

sizzle

> steaks

> > or hamburgers..... but when he isnt here - I end up going for

something

> > microwavable.

> > >

> > > It is very hard for me now to grasp anything out of the

> freezer..........

> > I can barely handle my hand being in there......... its sooooooo

> > cold........ I hurridly pick a t.v. dinner or budget gourmet and

slap it

> on

> > the counter - just barely missing the edge- encountnering yet

another

> almost

> > mishap....... had it fallen, it could have hit me and yet another

> > disaster.... but I cant hold on to the frozen dinner long enough to

not

> slap

> > it on there as such as it is too cold and my fingers hurt from the

way

> you

> > have to hold it........ I work at the task that most people can do

in

> five

> > seconds of tearing off the box....... I can't guesstimate the amount

of

> time

> > it takes me to get the box off and then peel off the

plastic.........

> > sometimes - I feel this isn't worth it and just leave it set there

in

> > frustration ...... and just go back to another room....... after I

> finally

> > get it all off- I stick the dinner in the cart of the scooter if it

will

> > fit......... if it doesnt- then on my lap.......... I do not care

for

> that

> > idea too much....... Thank God the microwave is just at a height i

can

> push

> > the button and throw it in and being digital there are really no

buttons

> to

> > push but using thumb I turn it on for approx 12 minutes.......

feeling

> like

> > I finally did accomplish something so minor to others but major to

me- I

> > head back to the office hoping to get some more e-mail done as I

wait

> for

> > that t.v. dinner......... I am feeln dosey from the medications I

> > guess......... barely able to keep my eyes open...... my back is

> starting to

> > hurt now too.....

> > >

> > > I look around the office and see a pile of bills that need paid-

so

> many

> > things that need done and I want to accomplish........ I used to

write

> down

> > a list of to do's and not stop until I had each thing crossed

off......

> > there is no way to do that now...... none at all......... I can not

> tell

> > one minute from the next if I will have the energy or how severe the

> pain

> > level will be to even try to accomplish all that needs to be done.

> > >

> > > I have finally got most of my bills payable online so that when

due I

> can

> > just push a button and do it that way rather than try to grip a pen

and

> > write out a check....... but still- even though made somewhat

easier, my

> > eyelids get so heavy - depending on pain level and medication

reaction

> that

> > sometimes I get to the url and thats about it ......... I no longer

have

> the

> > power to do what I went to the url for.

> > >

> > > The buzzer goes off on the microwave........ " oh yeah- my

> > dinner....... " -------- good thing it has a buzzer - or most likely I

> would

> > forget I even had stuck it in there . back on the scooter and out

to

> the

> > kitchn...... grab a pot holder out of the microwave and put the

plastic

> > container on it and pray while its either in the basket or on my lap

> that I

> > will make it to the table without spilling it.... I sit at the

kitchen

> > table and look out the window - watching cars go by and missing the

fact

> > that I cant drive....... and also thinking about summer- hoping with

the

> > scooter- I will at least be able to get out there this summer for a

> small

> > ride and get some fresh air...... 2 years of being in a house can

get

> pretty

> > drab!

> > >

> > > Most times I can't finish the dinner - so I stick it in the

> refrigerator

> > for later. ( On the amigo - of course ) Tad bit complicated to get

the

> > fridge door open/shut while placing that in there..... I try to get

what

> > items I will need - diet coke etc and place them in the basket and

head

> back

> > to the office- still hoping to get through some e-mail or

bills.........

> but

> > the muscle pain and leg pain, heck lets just say all over body pain

is

> too

> > much to bear today and even with those medications..... I feel like

I

> have a

> > foggy head and the meds are just not touching the pain. I give

another

> > shower another thought- so much work to do so though........ do I

want

> to do

> > all that for that again? Most often not but I will anyhway with the

> hopes

> > that it makes me feel some better.

> > >

> > > Even sitting here - typing this, I almost can't keep at it...... I

> have

> > moved up down- feet up down- stand , sit- nod off..........

etc........

> I am

> > even wondering If I will get this done and I so badly want to - so

its

> > understandable what a day in the life of TJ is like. Its pretty

much

> > depressing and makes tears stream down my face at times to think

about

> all

> > the stuff I used to do and no longer can do. Only thing that keeps

me

> going

> > is thinking about how bad someone else is....... there are

definitely

> people

> > worse off - yet I've went from hyperactive and hardly ever being

home to

> > basically being in this house from day to day........ outings

consisting

> of

> > dr appointments and hearings......... I can't sweep- I cant vacuum-

I

> cant

> > do laundry- I cant do dishes....... I can't even make my own

bed......

> > >

> > > I give up- I am going to go lay down again.......... this is just

too

> much

> > to handle........ maybe if I lie down again....... I can write some

more

> > later.

> > >

> > > Funny, even laying down isn't comfortable....... I can't stand a

> blanket

> > or sheet over my leg that has hardly any feeling......... which

makes no

> > sense to me- so I cover up best I can and try to think of good

> > things......... my boys- my parents- Jesus- my friends that I have

made

> > online....... how would anyone get through 2 years of this without

these

> > people in their life? Just wish so badly I could do more- more for

each

> and

> > everyone of them.......

> > >

> > > Sometimes the wheelchair seems the better way to go but it is such

a

> pain

> > on my arms........ I really think someone needs to perfect those

things,

> > talk about uncomfortable.

> > >

> > > Great- Ive struggled to get into this bed and yet again, this time

Im

> > tired but can't sleep......... pain worsens if I lay here and can't

> > sleep......... I gotta stop that........ I need to get back up and

try

> to do

> > something to keep my mind off it.

> > >

> > > I hold back tears when I see the schoolbus go by and realize my

baby

> wont

> > be coming home tonight....... he hates it when I call him baby , but

he

> is

> > and always will be my baby. He can be such a handful yet it is so

wrong

> > that he was forced to live with Ken and all the pain from that

memory

> plus

> > the fact that I am this ill and cant be with my own child? Just

makes

> me

> > sick.......

> > >

> > > I do not get into watching t.v. since my son passed away in 1997 -

its

> > just too hard for me- as he and I had many favorites and I just

can't

> sit

> > there and keep realizing he is not here- its too hard....... just

too

> > hard......... so I spend more time trying to make a memorial for him

on

> the

> > web................ I look at the basket of yarn and wish I could

> attempt

> > crocheting again but things fly out of my fingers now as it is and I

> realize

> > crocheting would only cause me tremendous pain.......

> > >

> > > The room is starting to spin again and my eyes are droopy.......

the

> pain

> > just never stops ughhhhh so irritating........ I watch the clock to

see

> when

> > the next dose can go in and give me a bit more of a relief........

Once

> > again I try to sit and do some e-mail and maybe get some sites

started

> or at

> > least one photo uploaded....... I want so badly to spend time

chatting

> with

> > the wonderful friends I have made and also to put some time into the

> Online

> > Ministry I built a while ago but I can't...... only for small

> intervals.

> > >

> > > Saddens me that it makes most worry- but I can't console anyone by

> being

> > where I just cant be due to the pain level.........

> > >

> > > I read through some of the EDS groups and don't feel so alone as

there

> are

> > others with the same symptoms and problems......... some can do more

> than I

> > , some are about the same as I. It does kinda bring some relief to

mind

> to

> > know that there are others you can confide in and they are going to

know

> > what you mean.

> > >

> > > Supper time rolls around and I decide to try some soup- as my

stomach

> > doesnt feel it can handle much more than that..... I once again get

on

> the

> > scooter and head to the kitchen......... but guess what? I can't

open

> it

> > !!!!! Grrrrrrrrrrrrrrrr- it makes me so angry......... I holler up

the

> > steps for my 16 year old to come open the can so his mother can have

> some

> > soup. He , of course - opens it in a flash and with no

problems....and

> I

> > stick it in a bowl that I can reach and just heat it up- its the

type

> that

> > you don't even need to add water to .

> > >

> > > Try getting a bowl of soup to the table in a regular size bowl

without

> > spilling it on a scooter or even in a wheelchair or with a

> cane..........

> > nearly impossible.... so I use those bigger bowls.... like cool whip

> > ones....... that way if it wants to splatter then so be it.......

> > >

> > > The rest of the evening is spent pretty much like the morning- one

> thing I

> > embarrassingly mention here- is using the restroom- I know it is not

> good

> > for anyone to " hold " it in but when it hurts so much to get from the

> > scooter-cane-wheelchair and onto a ' toilet'...... one tends to put

that

> > matter off as long as possible.........

> > >

> > > My days are all like this......... and have been for 2 yrs or

better

> > now............ I had pains, leg cramps, spasms, bleeding, bruising

easy

> as

> > I grew up too but never did anyone diagnose it with anything and now

it

> > makes sense.......

> > >

> > > Each day is the same as I've stated- but there is usually a

surprise

> or

> > two- and those being-

> > > looking down and seeing blood piles on the floor......... not

really

> > knowing where they came from.......... thinking they came from a

cat -

> > someone else getting hurt- and it isn't...... after checking the

pets

> out- I

> > find out the blood is coming from me.

> > >

> > > I sometimes feel I need to wrap myself up in a bubble.........

some

> type

> > of protective coating......... I am barely moving around due to pain

yet

> > somehow I get hurt each day.

> > >

> > > I had planned to make this a 3 day journal but there is nothing I

> really

> > can add here- everyday goes this way- with the exception of some new

> 'hurt'.

> > and/or stress that makes my skin just bleed........

> > >

> > > I hope this helps give insight in how a person with VEDS lives in

> Chronic

> > pain........

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > God Bless And Hugs- Love Moon

> > >

> > >

[Guest guest]

-

The scooter is a bit too heavy to haul around so will be taking my

wheelchair....... Lawyer said either would be fine......... to tell you the

truth- I'm still kind of dangerous on that scooter..... mercy- I might hit the

Judge...... LOL

I prefer to forget that letter- it was a waste of time and has no value for any

future references....... Its a depressant- that doesn't help with

anything....... and I'd rather look for the good than the bad....... so- Im sure

its in archives but it is no where here and I tore it up and it made me

feeeeeeeel so good to tear it to shreds.

Hugs- TJ

Hey TJ,

I don't know what you mean by wasted time? Take your scooter when you go to

court, the thing you ride on. You haven't wasted my time! The letter was

good, dig it out and save it for future reference if needed. I do hope the

judge will let you know his decision promptly rather than waiting more

agonizing months Well good about the nails. You are going to get it! I feel

it!

Hugs,

March 29 Journal- Moon- A Peek into the daily life

of

> Moon's

> > World. Please Read ASAP and give me insights for lawyer

> >

> >

> > >

> > > Please Read ASAP and give me insights for lawyer

> > >

> > >

> > > I know this is long guys- but this is what I plan to hand lawyer

> tomorrow-

> > do u see anything that needs editing? Thanks in Advance- TJ

> > >

> > >

> > >

> > > March 29-2004

> > >

> > > Tried to write a daily journal but hurts more to holding a pen

seems

> to be

> > something I can only do in small spurts and cramps my hand/fingers,,

> leaving

> > the writing nearly unreadable- so decided to keep one on computer-

that

> way

> > when the typing gets to be too much - I can hit save and finish it

> > later..... and have it still be readable later.

> > >

> > > I went to bed at 12:00 p.m. last night- felt so miserable...dizzy,

> > headache, you name it - it hurt.

> > > Woke with a jolt at 4:00 a.m. with another pain streak. How can

that

> be

> > with the amount of medicines I am on?

> > >

> > > It isn't time to take my medications yet. But I can take one of

the

> > breakthrough pain ones so am doing that and writing this while it

gets

> to

> > work. Hoping it will be enough to hold out until 8 a.m. when I can

take

> the

> > other meds to help with deeper pain.

> > >

> > > I figure taking a shower may help soothe the muscles/bones so

attempt

> to

> > get morning shower done. What a chore this has become. Takes me so

> long to

> > do things anymore.

> > >

> > > Using a cane - I hobble around getting belongings-

> > underwear-camisole-shirt-pants-nylons- towels-washcloth-shampoo etc.

I

> > place them in the wheelchair seat so I can roll it to be near the

shower

> for

> > easier access when I am done in shower. I place the towels on top

of it

> > all. The shower has a small step over ledge and I have to remember

> which

> > foot to put up and over first due to left knee not bending....

actually

> I

> > end up getting in backwards. The ledge is not that big but seems

huge

> to me

> > when I'm trying to get in the shower.

> > >

> > > I use a shower seat due to not being able to stand through the

length

> a

> > shower would take- I am able then to put legs up on the little ledge

> that is

> > normally used for soap/shampoo etc. I use a showerhead with a hose

.

> After

> > getting situated and getting water to the correct temperature- gotta

> make

> > sure its not too hot or too cold or more problems occur. Its nearly

> > impossible to wash my hair without wincing . I couldn't even begin

to

> > guesstimate a length of time it takes me to shower.. and getting

out -

> dried

> > off and dressed is another whole experience in itself. I reach to

get

> the

> > towel while on the shower seat and do most of my drying off while in

the

> > shower stall. I can't place a towel around my hair -tuban fashion-

as I

> > used to- hurts too much to hold arms up that long so I just pat it

as

> dry as

> > I can. Forget blowdryers- takes too much effort and am no longer

able

> to

> > hold any item the time it would take for it to be of use anymore

anyhow.

> > After drying self as best as I can- I attempt to put my clothes on-

> which is

> > a pain even though I choose clothing without buttons/snaps/zippers.

I

> get

> > the camisole on then sitting on the shower seat yet- because the one

> knee

> > doesnt bend properly I have to work my left foot through my

underwear

> and

> > then put the right leg in which of course is pretty lifeless so

takes

> effort

> > to get that leg in as well- same steps for nylons- only these take

> forever

> > but are a must medically- it is getting to a point though that one

day I

> > will no longer be able to do those either. I can't even describe

the

> amount

> > of effort and time it takes to get those buggars on. They are

support

> hose

> > and trying to get them on two painful legs using fingers that tend

to

> not

> > bend the ways they need to bend in order to help pull them on and up

is

> yet

> > another huge part of my day.

> > >

> > > When finally dressed- pull on shirt- pull on pants- its time to

brush

> > teeth. Making my way over to the sink by using the wheelchair for

> balance -

> > I turn the water on and try to get toothpaste on my toothbrush

without

> > getting frustrated enough to just say ' Forget it !'

> > >

> > > Again- trying to hold something small in my hand - the toothbrush-

and

> the

> > toothpaste tube- my fingers are having a heck of a workout and

creating

> > nothing but pain for me. The toothpaste tube has become one of my

worst

> > enemies. I make a mental note - like thats going to be of much

use-

> with

> > the fog that is in there , by the time I get to where my store list

is-

> I

> > most likely won't remember it anyhow.- but I make a mental note to

write

> > down - toothpaste in pllastic stand up bottle. I work at getting

> toothpaste

> > out of the tube and onto the toothbrush.... its almost impossible-

ugh-

> its

> > something so small yet causes me such big problems.. I even lay the

> > toothbrush on the counter and try to lay the tube of toothpaste down

so

> that

> > I can maybe work some toothpaste out by using both hands - pushing

on

> the

> > tube to get some out... when even a mere amount is out- I go with

it.

> No

> > sense of fighting with a toothpaste tube! All that strain for just

a

> little

> > dab - how irritating... if it weren't for hygiene and health- I'd

be

> almost

> > willing to pitch it in the trash and not bother with it anymore.

> > >

> > > Before leaving the ladies room, I try to get all that needs done

done-

> > takes too much effort going back and forth to have to return for

some

> little

> > forgotten item. At this point with wet hair, I just leave it that

way

> to

> > dry. I have problems using the ( toilet ) as it seems someone

adjusts

> it

> > lower and lower each day.... How to get in the proper position with

a

> knee

> > that doesn't bend and a leg that takes brain power to make go the

right

> way.

> > I end up finally getting there but geesh what a lot of work just to

go

> to

> > the bathroom.

> > >

> > > Its going to be a scooter day it appears-or at least until the

> medications

> > are able to make their way into my system at 8:00 a.m. - I crave a

cup

> of

> > coffee - so use the scooter to get out to the kitchen. I use the

cane

> to

> > get to the scooter and have to get in it just right ... if I get in

it

> on

> > the wrong side, I end up having to get back up again and going to

the

> other

> > side.... knee doesnt bend- I place the cane between my legs and hit

the

> > button to go out into the kitchen but can't reach the sink- ugh!

> Another

> > struggle to stand- get water- put the filter in the coffee pot- ever

try

> to

> > get those filters to seperate without finger trouble? ha... its

triple

> the

> > time trying with sore fingers- the scooter has a basket and I use a

cup

> that

> > has a lid on it so I don't spill it- if I am using the scooter I

put

> the

> > cup in the basket and then head to wherever I am going- if I use

cane -

> I

> > don't spill it as easily - ok - some drips out - but only a small

> amoount ?

> > by holding cane and trying to walk with a cup of coffee.

> > >

> > > It still isn't time to take the pain meds and the breakthrough

pain

> med is

> > not really helping yet ... but I figure if I rest for a while that

maybe

> the

> > pain will lessen some. I decide to read some e-mail ... I can never

> seem to

> > get comfortable.... After about 15 minutes, I have to get up and

move a

> bit

> > but cant stand for longer than a minute it seems before the pain

> worsens.. I

> > sit back down for a bit and of course during sitting time- its a

matter

> of

> > deciding if it feels any better with legs up on a chair or down- its

> > something I just keep trying to get comfy and with them up on the

chair

> it

> > seems to help cut back on some of the swelling in my legs.

> > >

> > > Soon it will be time to get Dakota who is 11 up so he can get

ready

> for

> > school. I have to keep myself occupied so that he isn't late. So I

> keep

> > going through the above measures until I hear the alarm clock go

off.

> > >

> > > Finally- I managed to get through the time and get Dakota on the

bus-

> I go

> > through such a sad spell after I see him leave on Mondays- as there

is

> an

> > issue that has really wronged me but I basically have done all in my

> power

> > to change and get no where.

> > >

> > > I won't see him until Thursday night and only from the time school

> gets

> > out until 8 p.m. unless there is a half day of school- or no

school- or

> he

> > comes down with some type of problem such as a belly ache etc.

> > >

> > > Stress really wears me out and makes me instant tired.... as if I

> could

> > fall asleep at the snap of a finger....... the boys arguing does

that to

> me

> > as well but losing one child ( Kenny ) and then having to see Dakota

> forced

> > to live with Ken when its definitely unjustifiable really wears me .

I

> have

> > taken my medications now and will finish my coffee and go back to

bed.

> > >

> > > My head hurts, my stomach is nauseaus and I just all around hurt

and

> > really want to just cry where no one can see me.... I hate me

> > sometimes........ hate the fact that there are so many - I can'ts in

my

> life

> > now- but I try to keep my chin up and not focus on the what I can

not do

> any

> > more- even though it takes much energy from me.

> > >

> > > I am off to lay down now- am feeling worse by the second- Good

night.

> > >

> > > Never fails- the medications only seem to work for a small amount

of

> time-

> > I can finally get to sleep and end up shooting out of bed with sharp

> > pains...... never know where the pain is going to be...... sometimes

its

> > legs- sometimes its arms- sometimes its colitis/ulcer- sometimes its

> severe

> > headaches- just never know........ Doesn't really make a person

look

> > forward to waking up....... And as for pain shooting you out of bed-

> talk

> > about a complicated situation when you can't 'shoot' across the room

to

> try

> > to walk off leg pain or cramp because your legs won't allow you to

stand

> for

> > longer than a minute before it starts taking on severe pain as

> > well.......... I almost feel like Im just doomed at this

point.------- I

> > reach around for the cane that I try to keep near me at all times-

but

> that

> > thing is a danger sometimes by itself- it has fallen on me-

etc........

> if

> > it were to hit me- it could cause severe problems too- just like

when

> that

> > cell phone just barely knicked me. Can't believe all these thoughts

run

> > through my mind and I feel like I'm definitely not going to make it

to

> the

> > restroom on time...... how can I? The pain is too high....... I am

> finally

> > in standing position but know if the floor has anything on it , like

a

> > little wad of paper or something the cat or kitten has played with

and I

> > happen to step on it I will be thrown out of balance......... not

liking

> > hospital stays too much- I tend to be careful......... with the use

of

> the

> > cane I slide my shoes on......and begin to hobble to door- and then

to

> the

> > rest room............. and barely and I do mean barely get there in

> time.!

> > >

> > > The amigo is in the hall so I decide to get on it and make it to

the

> > office door where I can take another breakthrough pain reliever and

> perhaps

> > do some e-mail or a bit of web design to help ward of the pain level

in

> my

> > mind......... it doesnt work........... so I decide to chat with a

few

> > friends for a little bit, but its gotten to a point that I really

can't

> last

> > too long at that either....... I end up having to place legs/up

down,

> stand-

> > sit...... its so frustrating.......... I want to be able to sit and

do a

> > website all in one sitting and I just cant do it any more! My

fingers

> will

> > ache and make it maddening to even try to linger at the desk too

> > long.........

> > >

> > > I feel constantly tired- but can not sleep as much as I really

need

> to. I

> > look at the clock and realize - I haven't eaten and feel I better do

so-

> > especially with all the medications in me...... I can't eat before

noon-

> or

> > I end up having an appointment with the toilet as my colitis and

ulcer

> are

> > not agreeable for me to handle food before then. I get back on the

> > scooter....... remembering to save time of standing/fussing by

putting

> legs

> > in the right way the first time ( rarely do I get it right the first

> time

> > around ) ...... If is home - he will cook something like

sizzle

> steaks

> > or hamburgers..... but when he isnt here - I end up going for

something

> > microwavable.

> > >

> > > It is very hard for me now to grasp anything out of the

> freezer..........

> > I can barely handle my hand being in there......... its sooooooo

> > cold........ I hurridly pick a t.v. dinner or budget gourmet and

slap it

> on

> > the counter - just barely missing the edge- encountnering yet

another

> almost

> > mishap....... had it fallen, it could have hit me and yet another

> > disaster.... but I cant hold on to the frozen dinner long enough to

not

> slap

> > it on there as such as it is too cold and my fingers hurt from the

way

> you

> > have to hold it........ I work at the task that most people can do

in

> five

> > seconds of tearing off the box....... I can't guesstimate the amount

of

> time

> > it takes me to get the box off and then peel off the

plastic.........

> > sometimes - I feel this isn't worth it and just leave it set there

in

> > frustration ...... and just go back to another room....... after I

> finally

> > get it all off- I stick the dinner in the cart of the scooter if it

will

> > fit......... if it doesnt- then on my lap.......... I do not care

for

> that

> > idea too much....... Thank God the microwave is just at a height i

can

> push

> > the button and throw it in and being digital there are really no

buttons

> to

> > push but using thumb I turn it on for approx 12 minutes.......

feeling

> like

> > I finally did accomplish something so minor to others but major to

me- I

> > head back to the office hoping to get some more e-mail done as I

wait

> for

> > that t.v. dinner......... I am feeln dosey from the medications I

> > guess......... barely able to keep my eyes open...... my back is

> starting to

> > hurt now too.....

> > >

> > > I look around the office and see a pile of bills that need paid-

so

> many

> > things that need done and I want to accomplish........ I used to

write

> down

> > a list of to do's and not stop until I had each thing crossed

off......

> > there is no way to do that now...... none at all......... I can not

> tell

> > one minute from the next if I will have the energy or how severe the

> pain

> > level will be to even try to accomplish all that needs to be done.

> > >

> > > I have finally got most of my bills payable online so that when

due I

> can

> > just push a button and do it that way rather than try to grip a pen

and

> > write out a check....... but still- even though made somewhat

easier, my

> > eyelids get so heavy - depending on pain level and medication

reaction

> that

> > sometimes I get to the url and thats about it ......... I no longer

have

> the

> > power to do what I went to the url for.

> > >

> > > The buzzer goes off on the microwave........ " oh yeah- my

> > dinner....... " -------- good thing it has a buzzer - or most likely I

> would

> > forget I even had stuck it in there . back on the scooter and out

to

> the

> > kitchn...... grab a pot holder out of the microwave and put the

plastic

> > container on it and pray while its either in the basket or on my lap

> that I

> > will make it to the table without spilling it.... I sit at the

kitchen

> > table and look out the window - watching cars go by and missing the

fact

> > that I cant drive....... and also thinking about summer- hoping with

the

> > scooter- I will at least be able to get out there this summer for a

> small

> > ride and get some fresh air...... 2 years of being in a house can

get

> pretty

> > drab!

> > >

> > > Most times I can't finish the dinner - so I stick it in the

> refrigerator

> > for later. ( On the amigo - of course ) Tad bit complicated to get

the

> > fridge door open/shut while placing that in there..... I try to get

what

> > items I will need - diet coke etc and place them in the basket and

head

> back

> > to the office- still hoping to get through some e-mail or

bills.........

> but

> > the muscle pain and leg pain, heck lets just say all over body pain

is

> too

> > much to bear today and even with those medications..... I feel like

I

> have a

> > foggy head and the meds are just not touching the pain. I give

another

> > shower another thought- so much work to do so though........ do I

want

> to do

> > all that for that again? Most often not but I will anyhway with the

> hopes

> > that it makes me feel some better.

> > >

> > > Even sitting here - typing this, I almost can't keep at it...... I

> have

> > moved up down- feet up down- stand , sit- nod off..........

etc........

> I am

> > even wondering If I will get this done and I so badly want to - so

its

> > understandable what a day in the life of TJ is like. Its pretty

much

> > depressing and makes tears stream down my face at times to think

about

> all

> > the stuff I used to do and no longer can do. Only thing that keeps

me

> going

> > is thinking about how bad someone else is....... there are

definitely

> people

> > worse off - yet I've went from hyperactive and hardly ever being

home to

> > basically being in this house from day to day........ outings

consisting

> of

> > dr appointments and hearings......... I can't sweep- I cant vacuum-

I

> cant

> > do laundry- I cant do dishes....... I can't even make my own

bed......

> > >

> > > I give up- I am going to go lay down again.......... this is just

too

> much

> > to handle........ maybe if I lie down again....... I can write some

more

> > later.

> > >

> > > Funny, even laying down isn't comfortable....... I can't stand a

> blanket

> > or sheet over my leg that has hardly any feeling......... which

makes no

> > sense to me- so I cover up best I can and try to think of good

> > things......... my boys- my parents- Jesus- my friends that I have

made

> > online....... how would anyone get through 2 years of this without

these

> > people in their life? Just wish so badly I could do more- more for

each

> and

> > everyone of them.......

> > >

> > > Sometimes the wheelchair seems the better way to go but it is such

a

> pain

> > on my arms........ I really think someone needs to perfect those

things,

> > talk about uncomfortable.

> > >

> > > Great- Ive struggled to get into this bed and yet again, this time

Im

> > tired but can't sleep......... pain worsens if I lay here and can't

> > sleep......... I gotta stop that........ I need to get back up and

try

> to do

> > something to keep my mind off it.

> > >

> > > I hold back tears when I see the schoolbus go by and realize my

baby

> wont

> > be coming home tonight....... he hates it when I call him baby , but

he

> is

> > and always will be my baby. He can be such a handful yet it is so

wrong

> > that he was forced to live with Ken and all the pain from that

memory

> plus

> > the fact that I am this ill and cant be with my own child? Just

makes

> me

> > sick.......

> > >

> > > I do not get into watching t.v. since my son passed away in 1997 -

its

> > just too hard for me- as he and I had many favorites and I just

can't

> sit

> > there and keep realizing he is not here- its too hard....... just

too

> > hard......... so I spend more time trying to make a memorial for him

on

> the

> > web................ I look at the basket of yarn and wish I could

> attempt

> > crocheting again but things fly out of my fingers now as it is and I

> realize

> > crocheting would only cause me tremendous pain.......

> > >

> > > The room is starting to spin again and my eyes are droopy.......

the

> pain

> > just never stops ughhhhh so irritating........ I watch the clock to

see

> when

> > the next dose can go in and give me a bit more of a relief........

Once

> > again I try to sit and do some e-mail and maybe get some sites

started

> or at

> > least one photo uploaded....... I want so badly to spend time

chatting

> with

> > the wonderful friends I have made and also to put some time into the

> Online

> > Ministry I built a while ago but I can't...... only for small

> intervals.

> > >

> > > Saddens me that it makes most worry- but I can't console anyone by

> being

> > where I just cant be due to the pain level.........

> > >

> > > I read through some of the EDS groups and don't feel so alone as

there

> are

> > others with the same symptoms and problems......... some can do more

> than I

> > , some are about the same as I. It does kinda bring some relief to

mind

> to

> > know that there are others you can confide in and they are going to

know

> > what you mean.

> > >

> > > Supper time rolls around and I decide to try some soup- as my

stomach

> > doesnt feel it can handle much more than that..... I once again get

on

> the

> > scooter and head to the kitchen......... but guess what? I can't

open

> it

> > !!!!! Grrrrrrrrrrrrrrrr- it makes me so angry......... I holler up

the

> > steps for my 16 year old to come open the can so his mother can have

> some

> > soup. He , of course - opens it in a flash and with no

problems....and

> I

> > stick it in a bowl that I can reach and just heat it up- its the

type

> that

> > you don't even need to add water to .

> > >

> > > Try getting a bowl of soup to the table in a regular size bowl

without

> > spilling it on a scooter or even in a wheelchair or with a

> cane..........

> > nearly impossible.... so I use those bigger bowls.... like cool whip

> > ones....... that way if it wants to splatter then so be it.......

> > >

> > > The rest of the evening is spent pretty much like the morning- one

> thing I

> > embarrassingly mention here- is using the restroom- I know it is not

> good

> > for anyone to " hold " it in but when it hurts so much to get from the

> > scooter-cane-wheelchair and onto a ' toilet'...... one tends to put

that

> > matter off as long as possible.........

> > >

> > > My days are all like this......... and have been for 2 yrs or

better

> > now............ I had pains, leg cramps, spasms, bleeding, bruising

easy

> as

> > I grew up too but never did anyone diagnose it with anything and now

it

> > makes sense.......

> > >

> > > Each day is the same as I've stated- but there is usually a

surprise

> or

> > two- and those being-

> > > looking down and seeing blood piles on the floor......... not

really

> > knowing where they came from.......... thinking they came from a

cat -

> > someone else getting hurt- and it isn't...... after checking the

pets

> out- I

> > find out the blood is coming from me.

> > >

> > > I sometimes feel I need to wrap myself up in a bubble.........

some

> type

> > of protective coating......... I am barely moving around due to pain

yet

> > somehow I get hurt each day.

> > >

> > > I had planned to make this a 3 day journal but there is nothing I

> really

> > can add here- everyday goes this way- with the exception of some new

> 'hurt'.

> > and/or stress that makes my skin just bleed........

> > >

> > > I hope this helps give insight in how a person with VEDS lives in

> Chronic

> > pain........

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > God Bless And Hugs- Love Moon

> > >

> > >

[Guest guest]

-

The scooter is a bit too heavy to haul around so will be taking my

wheelchair....... Lawyer said either would be fine......... to tell you the

truth- I'm still kind of dangerous on that scooter..... mercy- I might hit the

Judge...... LOL

I prefer to forget that letter- it was a waste of time and has no value for any

future references....... Its a depressant- that doesn't help with

anything....... and I'd rather look for the good than the bad....... so- Im sure

its in archives but it is no where here and I tore it up and it made me

feeeeeeeel so good to tear it to shreds.

Hugs- TJ

Hey TJ,

I don't know what you mean by wasted time? Take your scooter when you go to

court, the thing you ride on. You haven't wasted my time! The letter was

good, dig it out and save it for future reference if needed. I do hope the

judge will let you know his decision promptly rather than waiting more

agonizing months Well good about the nails. You are going to get it! I feel

it!

Hugs,

March 29 Journal- Moon- A Peek into the daily life

of

> Moon's

> > World. Please Read ASAP and give me insights for lawyer

> >

> >

> > >

> > > Please Read ASAP and give me insights for lawyer

> > >

> > >

> > > I know this is long guys- but this is what I plan to hand lawyer

> tomorrow-

> > do u see anything that needs editing? Thanks in Advance- TJ

> > >

> > >

> > >

> > > March 29-2004

> > >

> > > Tried to write a daily journal but hurts more to holding a pen

seems

> to be

> > something I can only do in small spurts and cramps my hand/fingers,,

> leaving

> > the writing nearly unreadable- so decided to keep one on computer-

that

> way

> > when the typing gets to be too much - I can hit save and finish it

> > later..... and have it still be readable later.

> > >

> > > I went to bed at 12:00 p.m. last night- felt so miserable...dizzy,

> > headache, you name it - it hurt.

> > > Woke with a jolt at 4:00 a.m. with another pain streak. How can

that

> be

> > with the amount of medicines I am on?

> > >

> > > It isn't time to take my medications yet. But I can take one of

the

> > breakthrough pain ones so am doing that and writing this while it

gets

> to

> > work. Hoping it will be enough to hold out until 8 a.m. when I can

take

> the

> > other meds to help with deeper pain.

> > >

> > > I figure taking a shower may help soothe the muscles/bones so

attempt

> to

> > get morning shower done. What a chore this has become. Takes me so

> long to

> > do things anymore.

> > >

> > > Using a cane - I hobble around getting belongings-

> > underwear-camisole-shirt-pants-nylons- towels-washcloth-shampoo etc.

I

> > place them in the wheelchair seat so I can roll it to be near the

shower

> for

> > easier access when I am done in shower. I place the towels on top

of it

> > all. The shower has a small step over ledge and I have to remember

> which

> > foot to put up and over first due to left knee not bending....

actually

> I

> > end up getting in backwards. The ledge is not that big but seems

huge

> to me

> > when I'm trying to get in the shower.

> > >

> > > I use a shower seat due to not being able to stand through the

length

> a

> > shower would take- I am able then to put legs up on the little ledge

> that is

> > normally used for soap/shampoo etc. I use a showerhead with a hose

.

> After

> > getting situated and getting water to the correct temperature- gotta

> make

> > sure its not too hot or too cold or more problems occur. Its nearly

> > impossible to wash my hair without wincing . I couldn't even begin

to

> > guesstimate a length of time it takes me to shower.. and getting

out -

> dried

> > off and dressed is another whole experience in itself. I reach to

get

> the

> > towel while on the shower seat and do most of my drying off while in

the

> > shower stall. I can't place a towel around my hair -tuban fashion-

as I

> > used to- hurts too much to hold arms up that long so I just pat it

as

> dry as

> > I can. Forget blowdryers- takes too much effort and am no longer

able

> to

> > hold any item the time it would take for it to be of use anymore

anyhow.

> > After drying self as best as I can- I attempt to put my clothes on-

> which is

> > a pain even though I choose clothing without buttons/snaps/zippers.

I

> get

> > the camisole on then sitting on the shower seat yet- because the one

> knee

> > doesnt bend properly I have to work my left foot through my

underwear

> and

> > then put the right leg in which of course is pretty lifeless so

takes

> effort

> > to get that leg in as well- same steps for nylons- only these take

> forever

> > but are a must medically- it is getting to a point though that one

day I

> > will no longer be able to do those either. I can't even describe

the

> amount

> > of effort and time it takes to get those buggars on. They are

support

> hose

> > and trying to get them on two painful legs using fingers that tend

to

> not

> > bend the ways they need to bend in order to help pull them on and up

is

> yet

> > another huge part of my day.

> > >

> > > When finally dressed- pull on shirt- pull on pants- its time to

brush

> > teeth. Making my way over to the sink by using the wheelchair for

> balance -

> > I turn the water on and try to get toothpaste on my toothbrush

without

> > getting frustrated enough to just say ' Forget it !'

> > >

> > > Again- trying to hold something small in my hand - the toothbrush-

and

> the

> > toothpaste tube- my fingers are having a heck of a workout and

creating

> > nothing but pain for me. The toothpaste tube has become one of my

worst

> > enemies. I make a mental note - like thats going to be of much

use-

> with

> > the fog that is in there , by the time I get to where my store list

is-

> I

> > most likely won't remember it anyhow.- but I make a mental note to

write

> > down - toothpaste in pllastic stand up bottle. I work at getting

> toothpaste

> > out of the tube and onto the toothbrush.... its almost impossible-

ugh-

> its

> > something so small yet causes me such big problems.. I even lay the

> > toothbrush on the counter and try to lay the tube of toothpaste down

so

> that

> > I can maybe work some toothpaste out by using both hands - pushing

on

> the

> > tube to get some out... when even a mere amount is out- I go with

it.

> No

> > sense of fighting with a toothpaste tube! All that strain for just

a

> little

> > dab - how irritating... if it weren't for hygiene and health- I'd

be

> almost

> > willing to pitch it in the trash and not bother with it anymore.

> > >

> > > Before leaving the ladies room, I try to get all that needs done

done-

> > takes too much effort going back and forth to have to return for

some

> little

> > forgotten item. At this point with wet hair, I just leave it that

way

> to

> > dry. I have problems using the ( toilet ) as it seems someone

adjusts

> it

> > lower and lower each day.... How to get in the proper position with

a

> knee

> > that doesn't bend and a leg that takes brain power to make go the

right

> way.

> > I end up finally getting there but geesh what a lot of work just to

go

> to

> > the bathroom.

> > >

> > > Its going to be a scooter day it appears-or at least until the

> medications

> > are able to make their way into my system at 8:00 a.m. - I crave a

cup

> of

> > coffee - so use the scooter to get out to the kitchen. I use the

cane

> to

> > get to the scooter and have to get in it just right ... if I get in

it

> on

> > the wrong side, I end up having to get back up again and going to

the

> other

> > side.... knee doesnt bend- I place the cane between my legs and hit

the

> > button to go out into the kitchen but can't reach the sink- ugh!

> Another

> > struggle to stand- get water- put the filter in the coffee pot- ever

try

> to

> > get those filters to seperate without finger trouble? ha... its

triple

> the

> > time trying with sore fingers- the scooter has a basket and I use a

cup

> that

> > has a lid on it so I don't spill it- if I am using the scooter I

put

> the

> > cup in the basket and then head to wherever I am going- if I use

cane -

> I

> > don't spill it as easily - ok - some drips out - but only a small

> amoount ?

> > by holding cane and trying to walk with a cup of coffee.

> > >

> > > It still isn't time to take the pain meds and the breakthrough

pain

> med is

> > not really helping yet ... but I figure if I rest for a while that

maybe

> the

> > pain will lessen some. I decide to read some e-mail ... I can never

> seem to

> > get comfortable.... After about 15 minutes, I have to get up and

move a

> bit

> > but cant stand for longer than a minute it seems before the pain

> worsens.. I

> > sit back down for a bit and of course during sitting time- its a

matter

> of

> > deciding if it feels any better with legs up on a chair or down- its

> > something I just keep trying to get comfy and with them up on the

chair

> it

> > seems to help cut back on some of the swelling in my legs.

> > >

> > > Soon it will be time to get Dakota who is 11 up so he can get

ready

> for

> > school. I have to keep myself occupied so that he isn't late. So I

> keep

> > going through the above measures until I hear the alarm clock go

off.

> > >

> > > Finally- I managed to get through the time and get Dakota on the

bus-

> I go

> > through such a sad spell after I see him leave on Mondays- as there

is

> an

> > issue that has really wronged me but I basically have done all in my

> power

> > to change and get no where.

> > >

> > > I won't see him until Thursday night and only from the time school

> gets

> > out until 8 p.m. unless there is a half day of school- or no

school- or

> he

> > comes down with some type of problem such as a belly ache etc.

> > >

> > > Stress really wears me out and makes me instant tired.... as if I

> could

> > fall asleep at the snap of a finger....... the boys arguing does

that to

> me

> > as well but losing one child ( Kenny ) and then having to see Dakota

> forced

> > to live with Ken when its definitely unjustifiable really wears me .

I

> have

> > taken my medications now and will finish my coffee and go back to

bed.

> > >

> > > My head hurts, my stomach is nauseaus and I just all around hurt

and

> > really want to just cry where no one can see me.... I hate me

> > sometimes........ hate the fact that there are so many - I can'ts in

my

> life

> > now- but I try to keep my chin up and not focus on the what I can

not do

> any

> > more- even though it takes much energy from me.

> > >

> > > I am off to lay down now- am feeling worse by the second- Good

night.

> > >

> > > Never fails- the medications only seem to work for a small amount

of

> time-

> > I can finally get to sleep and end up shooting out of bed with sharp

> > pains...... never know where the pain is going to be...... sometimes

its

> > legs- sometimes its arms- sometimes its colitis/ulcer- sometimes its

> severe

> > headaches- just never know........ Doesn't really make a person

look

> > forward to waking up....... And as for pain shooting you out of bed-

> talk

> > about a complicated situation when you can't 'shoot' across the room

to

> try

> > to walk off leg pain or cramp because your legs won't allow you to

stand

> for

> > longer than a minute before it starts taking on severe pain as

> > well.......... I almost feel like Im just doomed at this

point.------- I

> > reach around for the cane that I try to keep near me at all times-

but

> that

> > thing is a danger sometimes by itself- it has fallen on me-

etc........

> if

> > it were to hit me- it could cause severe problems too- just like

when

> that

> > cell phone just barely knicked me. Can't believe all these thoughts

run

> > through my mind and I feel like I'm definitely not going to make it

to

> the

> > restroom on time...... how can I? The pain is too high....... I am

> finally

> > in standing position but know if the floor has anything on it , like

a

> > little wad of paper or something the cat or kitten has played with

and I

> > happen to step on it I will be thrown out of balance......... not

liking

> > hospital stays too much- I tend to be careful......... with the use

of

> the

> > cane I slide my shoes on......and begin to hobble to door- and then

to

> the

> > rest room............. and barely and I do mean barely get there in

> time.!

> > >

> > > The amigo is in the hall so I decide to get on it and make it to

the

> > office door where I can take another breakthrough pain reliever and

> perhaps

> > do some e-mail or a bit of web design to help ward of the pain level

in

> my

> > mind......... it doesnt work........... so I decide to chat with a

few

> > friends for a little bit, but its gotten to a point that I really

can't

> last

> > too long at that either....... I end up having to place legs/up

down,

> stand-

> > sit...... its so frustrating.......... I want to be able to sit and

do a

> > website all in one sitting and I just cant do it any more! My

fingers

> will

> > ache and make it maddening to even try to linger at the desk too

> > long.........

> > >

> > > I feel constantly tired- but can not sleep as much as I really

need

> to. I

> > look at the clock and realize - I haven't eaten and feel I better do

so-

> > especially with all the medications in me...... I can't eat before

noon-

> or

> > I end up having an appointment with the toilet as my colitis and

ulcer

> are

> > not agreeable for me to handle food before then. I get back on the

> > scooter....... remembering to save time of standing/fussing by

putting

> legs

> > in the right way the first time ( rarely do I get it right the first

> time

> > around ) ...... If is home - he will cook something like

sizzle

> steaks

> > or hamburgers..... but when he isnt here - I end up going for

something

> > microwavable.

> > >

> > > It is very hard for me now to grasp anything out of the

> freezer..........

> > I can barely handle my hand being in there......... its sooooooo

> > cold........ I hurridly pick a t.v. dinner or budget gourmet and

slap it

> on

> > the counter - just barely missing the edge- encountnering yet

another

> almost

> > mishap....... had it fallen, it could have hit me and yet another

> > disaster.... but I cant hold on to the frozen dinner long enough to

not

> slap

> > it on there as such as it is too cold and my fingers hurt from the

way

> you

> > have to hold it........ I work at the task that most people can do

in

> five

> > seconds of tearing off the box....... I can't guesstimate the amount

of

> time

> > it takes me to get the box off and then peel off the

plastic.........

> > sometimes - I feel this isn't worth it and just leave it set there

in

> > frustration ...... and just go back to another room....... after I

> finally

> > get it all off- I stick the dinner in the cart of the scooter if it

will

> > fit......... if it doesnt- then on my lap.......... I do not care

for

> that

> > idea too much....... Thank God the microwave is just at a height i

can

> push

> > the button and throw it in and being digital there are really no

buttons

> to

> > push but using thumb I turn it on for approx 12 minutes.......

feeling

> like

> > I finally did accomplish something so minor to others but major to

me- I

> > head back to the office hoping to get some more e-mail done as I

wait

> for

> > that t.v. dinner......... I am feeln dosey from the medications I

> > guess......... barely able to keep my eyes open...... my back is

> starting to

> > hurt now too.....

> > >

> > > I look around the office and see a pile of bills that need paid-

so

> many

> > things that need done and I want to accomplish........ I used to

write

> down

> > a list of to do's and not stop until I had each thing crossed

off......

> > there is no way to do that now...... none at all......... I can not

> tell

> > one minute from the next if I will have the energy or how severe the

> pain

> > level will be to even try to accomplish all that needs to be done.

> > >

> > > I have finally got most of my bills payable online so that when

due I

> can

> > just push a button and do it that way rather than try to grip a pen

and

> > write out a check....... but still- even though made somewhat

easier, my

> > eyelids get so heavy - depending on pain level and medication

reaction

> that

> > sometimes I get to the url and thats about it ......... I no longer

have

> the

> > power to do what I went to the url for.

> > >

> > > The buzzer goes off on the microwave........ " oh yeah- my

> > dinner....... " -------- good thing it has a buzzer - or most likely I

> would

> > forget I even had stuck it in there . back on the scooter and out

to

> the

> > kitchn...... grab a pot holder out of the microwave and put the

plastic

> > container on it and pray while its either in the basket or on my lap

> that I

> > will make it to the table without spilling it.... I sit at the

kitchen

> > table and look out the window - watching cars go by and missing the

fact

> > that I cant drive....... and also thinking about summer- hoping with

the

> > scooter- I will at least be able to get out there this summer for a

> small

> > ride and get some fresh air...... 2 years of being in a house can

get

> pretty

> > drab!

> > >

> > > Most times I can't finish the dinner - so I stick it in the

> refrigerator

> > for later. ( On the amigo - of course ) Tad bit complicated to get

the

> > fridge door open/shut while placing that in there..... I try to get

what

> > items I will need - diet coke etc and place them in the basket and

head

> back

> > to the office- still hoping to get through some e-mail or

bills.........

> but

> > the muscle pain and leg pain, heck lets just say all over body pain

is

> too

> > much to bear today and even with those medications..... I feel like

I

> have a

> > foggy head and the meds are just not touching the pain. I give

another

> > shower another thought- so much work to do so though........ do I

want

> to do

> > all that for that again? Most often not but I will anyhway with the

> hopes

> > that it makes me feel some better.

> > >

> > > Even sitting here - typing this, I almost can't keep at it...... I

> have

> > moved up down- feet up down- stand , sit- nod off..........

etc........

> I am

> > even wondering If I will get this done and I so badly want to - so

its

> > understandable what a day in the life of TJ is like. Its pretty

much

> > depressing and makes tears stream down my face at times to think

about

> all

> > the stuff I used to do and no longer can do. Only thing that keeps

me

> going

> > is thinking about how bad someone else is....... there are

definitely

> people

> > worse off - yet I've went from hyperactive and hardly ever being

home to

> > basically being in this house from day to day........ outings

consisting

> of

> > dr appointments and hearings......... I can't sweep- I cant vacuum-

I

> cant

> > do laundry- I cant do dishes....... I can't even make my own

bed......

> > >

> > > I give up- I am going to go lay down again.......... this is just

too

> much

> > to handle........ maybe if I lie down again....... I can write some

more

> > later.

> > >

> > > Funny, even laying down isn't comfortable....... I can't stand a

> blanket

> > or sheet over my leg that has hardly any feeling......... which

makes no

> > sense to me- so I cover up best I can and try to think of good

> > things......... my boys- my parents- Jesus- my friends that I have

made

> > online....... how would anyone get through 2 years of this without

these

> > people in their life? Just wish so badly I could do more- more for

each

> and

> > everyone of them.......

> > >

> > > Sometimes the wheelchair seems the better way to go but it is such

a

> pain

> > on my arms........ I really think someone needs to perfect those

things,

> > talk about uncomfortable.

> > >

> > > Great- Ive struggled to get into this bed and yet again, this time

Im

> > tired but can't sleep......... pain worsens if I lay here and can't

> > sleep......... I gotta stop that........ I need to get back up and

try

> to do

> > something to keep my mind off it.

> > >

> > > I hold back tears when I see the schoolbus go by and realize my

baby

> wont

> > be coming home tonight....... he hates it when I call him baby , but

he

> is

> > and always will be my baby. He can be such a handful yet it is so

wrong

> > that he was forced to live with Ken and all the pain from that

memory

> plus

> > the fact that I am this ill and cant be with my own child? Just

makes

> me

> > sick.......

> > >

> > > I do not get into watching t.v. since my son passed away in 1997 -

its

> > just too hard for me- as he and I had many favorites and I just

can't

> sit

> > there and keep realizing he is not here- its too hard....... just

too

> > hard......... so I spend more time trying to make a memorial for him

on

> the

> > web................ I look at the basket of yarn and wish I could

> attempt

> > crocheting again but things fly out of my fingers now as it is and I

> realize

> > crocheting would only cause me tremendous pain.......

> > >

> > > The room is starting to spin again and my eyes are droopy.......

the

> pain

> > just never stops ughhhhh so irritating........ I watch the clock to

see

> when

> > the next dose can go in and give me a bit more of a relief........

Once

> > again I try to sit and do some e-mail and maybe get some sites

started

> or at

> > least one photo uploaded....... I want so badly to spend time

chatting

> with

> > the wonderful friends I have made and also to put some time into the

> Online

> > Ministry I built a while ago but I can't...... only for small

> intervals.

> > >

> > > Saddens me that it makes most worry- but I can't console anyone by

> being

> > where I just cant be due to the pain level.........

> > >

> > > I read through some of the EDS groups and don't feel so alone as

there

> are

> > others with the same symptoms and problems......... some can do more

> than I

> > , some are about the same as I. It does kinda bring some relief to

mind

> to

> > know that there are others you can confide in and they are going to

know

> > what you mean.

> > >

> > > Supper time rolls around and I decide to try some soup- as my

stomach

> > doesnt feel it can handle much more than that..... I once again get

on

> the

> > scooter and head to the kitchen......... but guess what? I can't

open

> it

> > !!!!! Grrrrrrrrrrrrrrrr- it makes me so angry......... I holler up

the

> > steps for my 16 year old to come open the can so his mother can have

> some

> > soup. He , of course - opens it in a flash and with no

problems....and

> I

> > stick it in a bowl that I can reach and just heat it up- its the

type

> that

> > you don't even need to add water to .

> > >

> > > Try getting a bowl of soup to the table in a regular size bowl

without

> > spilling it on a scooter or even in a wheelchair or with a

> cane..........

> > nearly impossible.... so I use those bigger bowls.... like cool whip

> > ones....... that way if it wants to splatter then so be it.......

> > >

> > > The rest of the evening is spent pretty much like the morning- one

> thing I

> > embarrassingly mention here- is using the restroom- I know it is not

> good

> > for anyone to " hold " it in but when it hurts so much to get from the

> > scooter-cane-wheelchair and onto a ' toilet'...... one tends to put

that

> > matter off as long as possible.........

> > >

> > > My days are all like this......... and have been for 2 yrs or

better

> > now............ I had pains, leg cramps, spasms, bleeding, bruising

easy

> as

> > I grew up too but never did anyone diagnose it with anything and now

it

> > makes sense.......

> > >

> > > Each day is the same as I've stated- but there is usually a

surprise

> or

> > two- and those being-

> > > looking down and seeing blood piles on the floor......... not

really

> > knowing where they came from.......... thinking they came from a

cat -

> > someone else getting hurt- and it isn't...... after checking the

pets

> out- I

> > find out the blood is coming from me.

> > >

> > > I sometimes feel I need to wrap myself up in a bubble.........

some

> type

> > of protective coating......... I am barely moving around due to pain

yet

> > somehow I get hurt each day.

> > >

> > > I had planned to make this a 3 day journal but there is nothing I

> really

> > can add here- everyday goes this way- with the exception of some new

> 'hurt'.

> > and/or stress that makes my skin just bleed........

> > >

> > > I hope this helps give insight in how a person with VEDS lives in

> Chronic

> > pain........

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > God Bless And Hugs- Love Moon

> > >

> > >

[Guest guest]

Thanks Patty- Sweet Thing to Say.

Not Brave at all-

And not trying to push religion.

I just turn everything over to God.

There is no way- I could be where I am today- emotionally- without him.

Take Care- TJ

TJ --

Please know that I will be thinking of you on the 5th and praying for a

positive response from the SSI.

The journal you wrote was so moving and really showed how difficult it can be

to live with EDS. You are one of the bravest people I know and you deserve all

the happiness and peace life can give.

Take care,

Love, Patti