Re: Don't mean to complain

September 6, 2004

Hi Kathy

My name is Jan I care for my Husband Duane who also is type II diabetic, the

last two weeks his blood sugar had been out of control and he is doing much

worse in the confusion and balance areas sleeping allot and also very

restless.

I just try to hold on and go with the flow because I don't have any other

choice.

This disease has a mind of its own and it doesn't take me into consideration

at all.

Hugs Jan

Re: Don't mean to complain

> Thanks all of you. Thank you, thank you.

>

> Yes, I know my body, and I'm not lazy. Not in the least.

>

> And I was/am a single mom too, and had to be super woman 24/7. It

> was sensory integration training for my autistic son 2x a week, it

> was counseling and tutoring for my other 'special ed' son 2x a week,

> it was meeting with UCLA's Autism Project, it was this and that and

> this and that (which I know many here can relate too).

>

> So I guess I'm still in 'super mode' and it just ain't workin'!!

>

> GREAT suggestions on making accomodations!! Wonderfull! Did my

> weeks worth of dishes sitting on a chair. Put some music on, tapped

> my feet. I vacumed 'part' of the living room, then sat down and

> watch some news on the tv (gonna be verrrrry hot here in southern

> calif again today). Then went back and did another part. I sat on

> the toilet (small bathroom) and cleaned the sink and counter tops.

> And so on....

>

> I can't tell you how much better I feel!! Whoo hoo, I'm

> an " accomodating " super woman!!

>

> I'm hoping this will pass. It has in the past, but again, it's

> never been this bad for this long.

>

> Called neuro and left message on Friday about the fatigue and about

> my 'speech arrest' (probably the newly diagnosed frontal lobe

> epilepsy) so I'm hoping she'll call back tomorrow.

>

> You guys are the best!!

>

> One quick question: I'm type II diabetic, and I " ve noticed that my

> blood sugar gets totally out of control prior to these episodes. I'm

> only on Actos in the morning, but there are times I'm in the 300's

> without ANY CHANGE in my diet. I get the 'uh oh' feeling when they

> go up because I can almost count on my neuro symptoms flaring up

> again.

>

> Does this happen to any of you that are diabetic?

>

> ~Kathy~

>

> > >

> > > Medical advice, information, opinions, data and statements

> contained herein

> > > are not necessarily those of the list moderators. The author of

> this e mail is

> > > entirely responsible for its content. List members are reminded

> of their

> > > responsibility to evaluate the content of the postings and

> consult with their

> > > physicians regarding changes in their own treatment.

> > >

> > > Personal attacks are not permitted on the list and anyone who

> sends one is

> > > automatically moderated or removed depending on the severity of

> the attack.

> > >

September 6, 2004

-Dear kathy, I'm sorry you feel alone in this, but here you have lots

of friends who understand and want to be there for you. I have been

wondering for 16 years without a diagnosis, lots of docs calling me

" functional " , but still i continue to get worse and develop new

problems and see other specialists- no one puts it together. This

group has been a godsend to me. people that understand and give

practical help as well in dealing with my problems. like you, I just

get sooo wiped out, and the legs soon feel like jelly when I do much

activity on them (actually I have a power chair that i use when i get

too wiped, or want to go somewhere- it is a wonderful aid) I do sleep

a lot, but during the day I am tired, not sleepy. I still feel

somewhat guilty resting so much during the day, I want people to know

I'm not being lazy. It sure doesn't make me feel better when docs say

they don't " feel " my weakness (Don't they hear me saying, it's

endurance that is such a problem??) Anyway, i hear you and I hope we

can all offer you some help and support, Celia

-- In , " jstkathy52004 " wrote:

>

> Especially in light of how seriously ill some of you are...but I

> just don't know where else to go.

>

> I haven't been dx yet...still in limbo...

>

> It's the fatigue...I used to have it on weekends...then after

> work...now, I can't get past 1pm without thinking to myself, " I've

> got to make it, just a few more hours, just a few more hours " .

>

> My legs are like jelly. I went to the store, and came back.

> Couldn't even do my grocery shopping.

>

> And it's not like I'm sleepy, I'm not. I just lay around all day

> and feel just fine. But as soon as I'm active again (active being

> relative, I mean just doing dishes or starting to vacume) I feel

> like crap all over again.

>

> I don't know what to say to people when they ask me what's wrong. I

> don't know how to explain to my co-workers while I look like a truck

> hit me. I don't have an *answer*, so it looks like I'm being 'lazy'

> or 'trying to get attention' or any number of things that go through

> peoples heads when someone is 'too tired' to do anything.

>

> Maybe I don't have Mito. I keep thinking maybe I have cancer or

> something...something they haven't found yet...What else would make

> me feel like this? The myoclonus is all but gone thanks to the

> Lamictal, so that's a relief. But two years ago I was going to the

> gym 3x a week, dancing once a week, pottery class once a week, girls-

> night every Thursday, you couldn't keep me still!

>

> Now I'm a shadow.

>

> And I don't know what to do. I feel alone in this.

>

> Thank you for letting me vent here.

>

> ~Kathy~

September 6, 2004

-Kathy, Do you have any problems with GI motility? This can be a cause

of blood sugar fluctuations, because the gut is not predictably

processing your food, Celia

-- In , " jstkathy52004 " wrote:

> Thanks all of you. Thank you, thank you.

>

> Yes, I know my body, and I'm not lazy. Not in the least.

>

> And I was/am a single mom too, and had to be super woman 24/7. It

> was sensory integration training for my autistic son 2x a week, it

> was counseling and tutoring for my other 'special ed' son 2x a week,

> it was meeting with UCLA's Autism Project, it was this and that and

> this and that (which I know many here can relate too).

>

> So I guess I'm still in 'super mode' and it just ain't workin'!!

>

> GREAT suggestions on making accomodations!! Wonderfull! Did my

> weeks worth of dishes sitting on a chair. Put some music on, tapped

> my feet. I vacumed 'part' of the living room, then sat down and

> watch some news on the tv (gonna be verrrrry hot here in southern

> calif again today). Then went back and did another part. I sat on

> the toilet (small bathroom) and cleaned the sink and counter tops.

> And so on....

>

> I can't tell you how much better I feel!! Whoo hoo, I'm

> an " accomodating " super woman!!

>

> I'm hoping this will pass. It has in the past, but again, it's

> never been this bad for this long.

>

> Called neuro and left message on Friday about the fatigue and about

> my 'speech arrest' (probably the newly diagnosed frontal lobe

> epilepsy) so I'm hoping she'll call back tomorrow.

>

> You guys are the best!!

>

> One quick question: I'm type II diabetic, and I " ve noticed that my

> blood sugar gets totally out of control prior to these episodes. I'm

> only on Actos in the morning, but there are times I'm in the 300's

> without ANY CHANGE in my diet. I get the 'uh oh' feeling when they

> go up because I can almost count on my neuro symptoms flaring up

> again.

>

> Does this happen to any of you that are diabetic?

>

> ~Kathy~

>

> > >

> > > Medical advice, information, opinions, data and statements

> contained herein

> > > are not necessarily those of the list moderators. The author of

> this e mail is

> > > entirely responsible for its content. List members are reminded

> of their

> > > responsibility to evaluate the content of the postings and

> consult with their

> > > physicians regarding changes in their own treatment.

> > >

> > > Personal attacks are not permitted on the list and anyone who

> sends one is

> > > automatically moderated or removed depending on the severity of

> the attack.

> > >

September 6, 2004

Celia,

I have diverticulitis, other than that I'm fine.

The only time I have constipation or diarreah is with certain foods

and definately with certain medications.

Thanks for your input!

~Kathy~

> >

> > > >

> > > > Medical advice, information, opinions, data and statements

> > contained herein

> > > > are not necessarily those of the list moderators. The author

of

> > this e mail is

> > > > entirely responsible for its content. List members are

reminded

> > of their

> > > > responsibility to evaluate the content of the postings and

> > consult with their

> > > > physicians regarding changes in their own treatment.

> > > >

> > > > Personal attacks are not permitted on the list and anyone

who

> > sends one is

> > > > automatically moderated or removed depending on the severity

of

> > the attack.

> > > >

September 6, 2004

--- Kathy... I can feel your pain. Your words are so very familiar

to me.I have felt the same emotions you are feeling. The fatique is

so emotional devastating.... I too am waiting for an officail

diagnosis.

Another energy conservation tip is a handicap parking sticker if you

do not already have one. Mine has saved me so much precious energy.

I even use it when I am feeling well if I have to park to far. I

will do anything to avoid a crash. It is hard to find that balance

of activity and rest. I am getting better though. I was never a sit

still person before becoming ill. Now I save my energy for things

that are really important or things I really want to do. So many

things just are no longer worth the energy and I have learned to put

the pride away.

Don't feel quilty for venting. You are going through a grieving

process. This is a very difficult thing. Hang in there we are all in

this together. We are here for you.

Hugs

dawn a

In , " jstkathy52004 " wrote:

>

> Especially in light of how seriously ill some of you are...but I

> just don't know where else to go.

>

> I haven't been dx yet...still in limbo...

>

> It's the fatigue...I used to have it on weekends...then after

> work...now, I can't get past 1pm without thinking to myself, " I've

> got to make it, just a few more hours, just a few more hours " .

>

> My legs are like jelly. I went to the store, and came back.

> Couldn't even do my grocery shopping.

>

> And it's not like I'm sleepy, I'm not. I just lay around all day

> and feel just fine. But as soon as I'm active again (active being

> relative, I mean just doing dishes or starting to vacume) I feel

> like crap all over again.

>

> I don't know what to say to people when they ask me what's wrong.

I

> don't know how to explain to my co-workers while I look like a

truck

> hit me. I don't have an *answer*, so it looks like I'm

being 'lazy'

> or 'trying to get attention' or any number of things that go

through

> peoples heads when someone is 'too tired' to do anything.

>

> Maybe I don't have Mito. I keep thinking maybe I have cancer or

> something...something they haven't found yet...What else would

make

> me feel like this? The myoclonus is all but gone thanks to the

> Lamictal, so that's a relief. But two years ago I was going to the

> gym 3x a week, dancing once a week, pottery class once a week,

girls-

> night every Thursday, you couldn't keep me still!

>

> Now I'm a shadow.

>

> And I don't know what to do. I feel alone in this.

>

> Thank you for letting me vent here.

>

> ~Kathy~

September 6, 2004

Hi Kathy,

I hear you loud and clear!!! I am sorry that you are feeling so bad right now.

It is hard waiting for a dx, and at times you feel that you will never get a

diagnosis. It took me 10 yrs of active fighting to finally get a dx. But I had

symptoms long before I started to search for a dx.

I, too like you were very active, no one could call me *Lazy*. Of course as time

went on I got more and more tired until it went into a full blown fatigue. I

won't bore you with all of my past problems and symptoms, but will tell you that

in the past year I have been sleeping for 18 to 20 hours a day, and at times I

have slept for a straight 48 hours without ever waking up, not event to get a

drink or go to the potty. That is how bad it is. And I lost over 20 lbs in the

last 7 months(and still losing weight) which I didn't need to do, since I didn't

weigh that much to start. The last time I was weighed I weighed in @ a whopping

80lbs. in May 2004.

I of course have alot of the same symptoms you have with your legs feeling like

jelly. I also have severe hip and leg pain with cramps, spasms, and alot of

myoclonus. And I have these horrible myoclonus seizures( that is what the Neuro

calls them) that last for up to 10 hours, but most of the time I can get through

them in 8 hours. They are so exhausting and painful. I had one the other night,

and I just sat in bed rocking and crying and screaming( the screaming I have NO

control over, it just happens). It is a very hard disease to live through.

Please don't let others tell you that you are lazy, you know in your heart that

you aren't, you know that there is something wrong inside and that is why you

can't do what you used to do. I noticed you said that at one time you where very

active, like most of us, but I am wondering if anything major or traumatic

happened in your life to trigger your symptoms of Mito?

There are times when people look at me and say " Well, you LOOK alright, what did

you say was WRONG with YOU? " I wonder to myself " how can they say that? " How

can they look at me and say that I LOOK alright. when I LOOK at myself in the

mirror and I see someone who is totally wiped out, bags under eyes, pale colored

skin, eyes half shut, a person who is only half of what she used to

be...etc...etc...

Kathy, you are not alone, we are all here for you. I am glad you vented today.

It is better to get it out in the open than to keep it locked up inside where it

will eat you away. Keeping you in my thoughts and prayers.

Hugs,

Ann-Marie

Don't mean to complain

Especially in light of how seriously ill some of you are...but I

just don't know where else to go.

I haven't been dx yet...still in limbo...

It's the fatigue...I used to have it on weekends...then after

work...now, I can't get past 1pm without thinking to myself, " I've

got to make it, just a few more hours, just a few more hours " .

My legs are like jelly. I went to the store, and came back.

Couldn't even do my grocery shopping.

And it's not like I'm sleepy, I'm not. I just lay around all day

and feel just fine. But as soon as I'm active again (active being

relative, I mean just doing dishes or starting to vacume) I feel

like crap all over again.

I don't know what to say to people when they ask me what's wrong. I

don't know how to explain to my co-workers while I look like a truck

hit me. I don't have an *answer*, so it looks like I'm being 'lazy'

or 'trying to get attention' or any number of things that go through

peoples heads when someone is 'too tired' to do anything.

Maybe I don't have Mito. I keep thinking maybe I have cancer or

something...something they haven't found yet...What else would make

me feel like this? The myoclonus is all but gone thanks to the

Lamictal, so that's a relief. But two years ago I was going to the

gym 3x a week, dancing once a week, pottery class once a week, girls-

night every Thursday, you couldn't keep me still!

Now I'm a shadow.

And I don't know what to do. I feel alone in this.

Thank you for letting me vent here.

~Kathy~

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

September 6, 2004

Laurie and Jan

Wow. Interesting. And yes, most of the time when I'm a normal

diabetic, excercise/activity does bring it down, but not when

these 'flares' occur.

Wonder what that's all about?

Thanks for the input. I'll mention this to my neuro as well.

~Kathy~

> Hi Kathy

>

> My name is Jan I care for my Husband Duane who also is type II

diabetic, the

> last two weeks his blood sugar had been out of control and he is

doing much

> worse in the confusion and balance areas sleeping allot and also

very

> restless.

>

> I just try to hold on and go with the flow because I don't have

any other

> choice.

>

> This disease has a mind of its own and it doesn't take me into

consideration

> at all.

>

> Hugs Jan

>

> Re: Don't mean to complain

>

> > Thanks all of you. Thank you, thank you.

> >

> > Yes, I know my body, and I'm not lazy. Not in the least.

> >

> > And I was/am a single mom too, and had to be super woman 24/7.

It

> > was sensory integration training for my autistic son 2x a week,

it

> > was counseling and tutoring for my other 'special ed' son 2x a

week,

> > it was meeting with UCLA's Autism Project, it was this and that

and

> > this and that (which I know many here can relate too).

> >

> > So I guess I'm still in 'super mode' and it just ain't workin'!!

> >

> > GREAT suggestions on making accomodations!! Wonderfull! Did my

> > weeks worth of dishes sitting on a chair. Put some music on,

tapped

> > my feet. I vacumed 'part' of the living room, then sat down and

> > watch some news on the tv (gonna be verrrrry hot here in southern

> > calif again today). Then went back and did another part. I sat

on

> > the toilet (small bathroom) and cleaned the sink and counter

tops.

> > And so on....

> >

> > I can't tell you how much better I feel!! Whoo hoo, I'm

> > an " accomodating " super woman!!

> >

> > I'm hoping this will pass. It has in the past, but again, it's

> > never been this bad for this long.

> >

> > Called neuro and left message on Friday about the fatigue and

about

> > my 'speech arrest' (probably the newly diagnosed frontal lobe

> > epilepsy) so I'm hoping she'll call back tomorrow.

> >

> > You guys are the best!!

> >

> > One quick question: I'm type II diabetic, and I " ve noticed that

my

> > blood sugar gets totally out of control prior to these episodes.

I'm

> > only on Actos in the morning, but there are times I'm in the

300's

> > without ANY CHANGE in my diet. I get the 'uh oh' feeling when

they

> > go up because I can almost count on my neuro symptoms flaring up

> > again.

> >

> > Does this happen to any of you that are diabetic?

> >

> > ~Kathy~

> >

> > > >

> > > > Medical advice, information, opinions, data and statements

> > contained herein

> > > > are not necessarily those of the list moderators. The author

of

> > this e mail is

> > > > entirely responsible for its content. List members are

reminded

> > of their

> > > > responsibility to evaluate the content of the postings and

> > consult with their

> > > > physicians regarding changes in their own treatment.

> > > >

> > > > Personal attacks are not permitted on the list and anyone who

> > sends one is

> > > > automatically moderated or removed depending on the severity

of

> > the attack.

> > > >

September 6, 2004

Celia,

Yes, I know what you mean when the doc's can't see or measure the

weakness. Only once was it abundantly clear and that was during a

hospitalization. The ER attending had me lay on my back and then

asked me to lift up my leg and drag my heel down my shin.

Well that was a joke. I held, or tried at least, to hold my leg up

to do what she asked and it wobbled all over the place. I could not

do it.

I didn't know that was 'weakness' believe it or not because I also

had stiffness so I could walk some.

After my admission, the nurse asked me if I wanted a

walker. " " I said, " what for? "

" For your weakness " she said.

Yea. Then I put it alllllll together. I thought the door at work

was not working right, so I asked the maintenance guy to put some DW-

40 on it. I bought new shoes because I kept tripping. I bought a

new hair dryer because " they make them too heavy " . I couldn't turn

over in bed without grabbing onto the side because " it must be

arthritis. "

It finally dawned on me that nothing was wrong with the 'things', it

was me and WEAKNESS!.

But that was the exception and it was exceptional weakness. Now I'm

very aware of the 'jelly legs' when walking and of course the doc

can't measure it. I think they look for signs like I described

above.

But you and I and the rest of this group know differently. We KNOW

our bodies!!!

Thanks for your reply and for all your support.

~Kathy~

Duh.

> >

> > Especially in light of how seriously ill some of you are...but I

> > just don't know where else to go.

> >

> > I haven't been dx yet...still in limbo...

> >

> > It's the fatigue...I used to have it on weekends...then after

> > work...now, I can't get past 1pm without thinking to

myself, " I've

> > got to make it, just a few more hours, just a few more hours " .

> >

> > My legs are like jelly. I went to the store, and came back.

> > Couldn't even do my grocery shopping.

> >

> > And it's not like I'm sleepy, I'm not. I just lay around all

day

> > and feel just fine. But as soon as I'm active again (active

being

> > relative, I mean just doing dishes or starting to vacume) I feel

> > like crap all over again.

> >

> > I don't know what to say to people when they ask me what's

wrong. I

> > don't know how to explain to my co-workers while I look like a

truck

> > hit me. I don't have an *answer*, so it looks like I'm

being 'lazy'

> > or 'trying to get attention' or any number of things that go

through

> > peoples heads when someone is 'too tired' to do anything.

> >

> > Maybe I don't have Mito. I keep thinking maybe I have cancer or

> > something...something they haven't found yet...What else would

make

> > me feel like this? The myoclonus is all but gone thanks to the

> > Lamictal, so that's a relief. But two years ago I was going to

the

> > gym 3x a week, dancing once a week, pottery class once a week,

girls-

> > night every Thursday, you couldn't keep me still!

> >

> > Now I'm a shadow.

> >

> > And I don't know what to do. I feel alone in this.

> >

> > Thank you for letting me vent here.

> >

> > ~Kathy~

September 6, 2004

Dawn,

Your a gem. Thank you.

Funny, I thought about the handicapped parking sticker today.

I used to have one. I also have Interstial Cystitis and had one for

a while. But it's expired.

Since I don't have a dx yet, I doubt my neuro would sign off on one

for me.

But thank you for mentioning it.

~Kathy~

> >

> > Especially in light of how seriously ill some of you are...but I

> > just don't know where else to go.

> >

> > I haven't been dx yet...still in limbo...

> >

> > It's the fatigue...I used to have it on weekends...then after

> > work...now, I can't get past 1pm without thinking to

myself, " I've

> > got to make it, just a few more hours, just a few more hours " .

> >

> > My legs are like jelly. I went to the store, and came back.

> > Couldn't even do my grocery shopping.

> >

> > And it's not like I'm sleepy, I'm not. I just lay around all

day

> > and feel just fine. But as soon as I'm active again (active

being

> > relative, I mean just doing dishes or starting to vacume) I feel

> > like crap all over again.

> >

> > I don't know what to say to people when they ask me what's

wrong.

> I

> > don't know how to explain to my co-workers while I look like a

> truck

> > hit me. I don't have an *answer*, so it looks like I'm

> being 'lazy'

> > or 'trying to get attention' or any number of things that go

> through

> > peoples heads when someone is 'too tired' to do anything.

> >

> > Maybe I don't have Mito. I keep thinking maybe I have cancer or

> > something...something they haven't found yet...What else would

> make

> > me feel like this? The myoclonus is all but gone thanks to the

> > Lamictal, so that's a relief. But two years ago I was going to

the

> > gym 3x a week, dancing once a week, pottery class once a week,

> girls-

> > night every Thursday, you couldn't keep me still!

> >

> > Now I'm a shadow.

> >

> > And I don't know what to do. I feel alone in this.

> >

> > Thank you for letting me vent here.

> >

> > ~Kathy~

September 6, 2004

Ann-Marie,

Unbelievable how wonderful you all are here. Thank you for your

post.

I'm so sorry to hear about your seizures. I was just diagnosed with

Frontal Lobe Epilepsy, and the Lamictal I take really seems to help.

I no longer wake up with the myoclonic jerks. I have small ones,

but not like the huge ones I used to have. And the cramps have

subsided significantly as well.

I'm taking Clonopin for the stiffness/pain that I have in my hips,

behind my kness, behind my ankles, and in the pits of my arms.

What meds are you taking?

I'm so sorry to hear you are suffering so much.

Do you have 'speech arrest' too? I do. It's interfering with my

job now.

I'll be thinking of you tonite Ann-Marie and will send some good

stuff out into the universe for you. It'll be soft and tender.

It'll be smooth and gentle.

Hang in there.

~Kathy~

> Hi Kathy,

>

> I hear you loud and clear!!! I am sorry that you are feeling so

bad right now. It is hard waiting for a dx, and at times you feel

that you will never get a diagnosis. It took me 10 yrs of active

fighting to finally get a dx. But I had symptoms long before I

started to search for a dx.

>

> I, too like you were very active, no one could call me *Lazy*. Of

course as time went on I got more and more tired until it went into

a full blown fatigue. I won't bore you with all of my past problems

and symptoms, but will tell you that in the past year I have been

sleeping for 18 to 20 hours a day, and at times I have slept for a

straight 48 hours without ever waking up, not event to get a drink

or go to the potty. That is how bad it is. And I lost over 20 lbs in

the last 7 months(and still losing weight) which I didn't need to

do, since I didn't weigh that much to start. The last time I was

weighed I weighed in @ a whopping 80lbs. in May 2004.

>

> I of course have alot of the same symptoms you have with your legs

feeling like jelly. I also have severe hip and leg pain with cramps,

spasms, and alot of myoclonus. And I have these horrible myoclonus

seizures( that is what the Neuro calls them) that last for up to 10

hours, but most of the time I can get through them in 8 hours. They

are so exhausting and painful. I had one the other night, and I just

sat in bed rocking and crying and screaming( the screaming I have NO

control over, it just happens). It is a very hard disease to live

through.

>

> Please don't let others tell you that you are lazy, you know in

your heart that you aren't, you know that there is something wrong

inside and that is why you can't do what you used to do. I noticed

you said that at one time you where very active, like most of us,

but I am wondering if anything major or traumatic happened in your

life to trigger your symptoms of Mito?

>

> There are times when people look at me and say " Well, you LOOK

alright, what did you say was WRONG with YOU? " I wonder to myself "

how can they say that? " How can they look at me and say that I LOOK

alright. when I LOOK at myself in the mirror and I see someone who

is totally wiped out, bags under eyes, pale colored skin, eyes half

shut, a person who is only half of what she used to

be...etc...etc...

>

> Kathy, you are not alone, we are all here for you. I am glad you

vented today. It is better to get it out in the open than to keep it

locked up inside where it will eat you away. Keeping you in my

thoughts and prayers.

>

> Hugs,

> Ann-Marie

> Don't mean to complain

>

> Especially in light of how seriously ill some of you are...but I

> just don't know where else to go.

>

> I haven't been dx yet...still in limbo...

>

> It's the fatigue...I used to have it on weekends...then after

> work...now, I can't get past 1pm without thinking to

myself, " I've

> got to make it, just a few more hours, just a few more hours " .

>

> My legs are like jelly. I went to the store, and came back.

> Couldn't even do my grocery shopping.

>

> And it's not like I'm sleepy, I'm not. I just lay around all

day

> and feel just fine. But as soon as I'm active again (active

being

> relative, I mean just doing dishes or starting to vacume) I feel

> like crap all over again.

>

> I don't know what to say to people when they ask me what's

wrong. I

> don't know how to explain to my co-workers while I look like a

truck

> hit me. I don't have an *answer*, so it looks like I'm

being 'lazy'

> or 'trying to get attention' or any number of things that go

through

> peoples heads when someone is 'too tired' to do anything.

>

> Maybe I don't have Mito. I keep thinking maybe I have cancer or

> something...something they haven't found yet...What else would

make

> me feel like this? The myoclonus is all but gone thanks to the

> Lamictal, so that's a relief. But two years ago I was going to

the

> gym 3x a week, dancing once a week, pottery class once a week,

girls-

> night every Thursday, you couldn't keep me still!

>

> Now I'm a shadow.

>

> And I don't know what to do. I feel alone in this.

>

> Thank you for letting me vent here.

>

> ~Kathy~

>

> Medical advice, information, opinions, data and statements

contained herein are not necessarily those of the list moderators.

The author of this e mail is entirely responsible for its content.

List members are reminded of their responsibility to evaluate the

content of the postings and consult with their physicians regarding

changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who

sends one is automatically moderated or removed depending on the

severity of the attack.

>

September 6, 2004

Kathy,

Here I am - I know you probably have wondered about that. I'm really glad you

are getting all the support here that I promised but you know.. I knew you

would. This is one great group and you are part of the family now.

Suggestion - ask that neuro to help you get the handicapped pass. If you have

muscle weakness or they even suspect a problem, they normally will do it for

you. The worst think he can do is say " no " but I have a feeling that he won't.

Another suggestion - if you don't already have a scooter of your own (or a power

chair) and you don't feel that your doctor would write a script for one yet -

use the ones in the stores that have them and save your energy for better

things.

Alice

Dawn,

Your a gem. Thank you.

Funny, I thought about the handicapped parking sticker today.

I used to have one. I also have Interstial Cystitis and had one for

a while. But it's expired.

Since I don't have a dx yet, I doubt my neuro would sign off on one

for me.

But thank you for mentioning it.

~Kathy~

September 7, 2004

--- Wow Kathy, sleeping 48 hrs straight that is a lot. I have heard

others on this sight talk about setting an alarm so they get up and

eat. I pray to God I never get to that point and if I do it is after

my children are full grown. My heart goes out to you.

You are very small weighing only eighty pounds. Can I ask how tall

you are?

Hugs dawn a

In , " Ann-Marie " wrote: