Hello

[Guest guest]

Yes falling out of bed isn't much fun. My back and left hip are really sore and

my right knee went out of joint, that really hurts, but in spirit or mood, i am

doing okay. If my type is larger than most, it just means I have trouble seeing

when my blood sugar is up. Glad t hat it is typing though, i am deaf about 80%

Blessings, K

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

Art Website: www.kaisercreations.com

Ghost Website: http://cathykaiser.tripod.com

Ask about our earth ways for healing: Aromatherapy, Chakra alignment, crystal

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make pendulums. They are programed to your needs and ready to use. Coming with

instructions, lessons for practice and charts. My four books two children books

and two adult books.

Re: Hello

spinal problems

Date: Friday, January 30, 2009, 12:42 PM

Yes I do have what feels like a cracking, grinding noise. The shocks I

feel are not painful but they radiate from my neck into my head. I had

thought it was related to my Paxil, but I have been off it for 2 weeks and I

had the shocks on tues-thurs. I don't think it is withdrawal.

Jan (Fargo)

[Guest guest]

Yeah I did it again this morning....only I kind of fell down the stairs

again....ARRRGGGGHHH!!! I am so tired of being clumsy, part of it is the meds,

they make me dizzy and feel like I am drunk. Like this morning I NEED to go to

the bank and I can't drive, I can barely walk....I am just thinking WTF, I am so

sick of this, does it ever end? I mean when I have surgery does it get better?

Will I ever be off pain killers? OMG will I ever be normal again? ARRRGHHHH I am

so sick of feeling this way. I went off the pain killer for like 2 months, and I

couldn't take it anymore I had to tell them I was hurting really bad!! Even now

with the stuff I am on, lyrica & Ultram I am still in pain, ok not as bad, but

still it kills me to walk up the stairs or do a lot of stuff...OMG getting off

the toilet is horrible!

Sorry I am really frustrated!!!

From: Jan G <jangilcableone (DOT) net>

Subject: Re: Hello

spinedisorderssuppo rtgroup@gro ups.com

Date: Friday, January 30, 2009, 12:42 PM

Yes I do have what feels like a cracking, grinding noise. The shocks I

feel are not painful but they radiate from my neck into my head. I had

thought it was related to my Paxil, but I have been off it for 2 weeks and I

had the shocks on tues-thurs. I don't think it is withdrawal.

Jan (Fargo)

[Guest guest]

Trudy,

I have metal in my lower and upper spine, one shoulder and both kneecaps and

none of it has caused any problems.

Lexie

[Guest guest]

Hi Trudy,

 There actually IS a danger of metals reacting in the body, especially mixed

ones and /or metals that touch. Just a note, I had to have my gardware out less

than 18 months after my last fusion because they were causing me so much pain.

They are a foreign body and even though the titanium used is fairly inert, some

people may react more than others toward the foreign body.

I had an 80% reduction in pain immediately after the hardware was removed. This

can only be done well into a solid fusion and after a CT shows it's solid.

---

________________________________

From: Trudy <semiclosed@...>

spinal problems

Sent: Saturday, January 31, 2009 2:54:31 AM

Subject: hello

Hello Everyone

I thought it was time to introduce myself now that I can sit longer

at the computer.

I had never ever had back problems until last summer when I was

squished between the bobcat blade and the roof of the cab. The blade

broke my L4 and L5 tabs and pushed my L4 50% over my L5. I am very

fortunate that I can walk. I received 4 screws in my 5th lumbar and 2

in my 4th. I will reach 50 years of age this year. I am reaching my 6

month period in the recovery route and I still get cramps in my legs,

numbness in my feet and numbness on the back of my thigh and pains

throughout my back and butt and feet.

Two years ago I had my left hip replaced.

Does anyone know if there is a reaction to different metals in the body?

Thanks

Trudy

[Guest guest]

Welcome Jefferie! I bet the name is difficult. My husband's name is and

everybody wants to make it Jeffery. He has to sign a lot of legal documents so I

go through the red tape of getting it fixed a lot. I call him Babe, so it's not

a problem for me, lol.

Your history sounds painffully familier, lots of us here have gone thru

simular progressions of symptoms. I can use a TENS unit on my lower back and

have really good results from that. Now the electrode pads with the sticky stuff

is different for me. That is just a pain in the butt! They either, slide off,

get pulled off on my clothing (causing much dancing and swearing in all the

wrong places) or they eat my skin off. I am hoping to get a spinal stimulator to

hopefully bring all this to a tollerable level.

Sorry for the book, I tend to talk too much on a bunch of drugs, so guess

where I am right now, lol.

Again, welcome!

Lexie

[Guest guest]

Thanks for the support Lexie. I love  your name. I can't use the Tens unit, I

can't stand anything like that electical impluses on my skin. I won't do another

emg either as I really got hystical and the Dr. almost slapped me to quit

crying. That bad!! I am anxious to get well as I have been in pain since June of

07 and everything one thought I had pulled a muscle in my thigh as it was there

the pain started. My ortho who fixed my shoulder finally decided to do mri on my

back and that's when we found out where the real problem was, and that was in

may of 08. A long time to suffer.

Jefferie

   JEFF !

From: Lexie <lexie@...>

Subject: Re: Hello

spinal problems

Date: Sunday, February 1, 2009, 5:00 PM

Welcome Jefferie! I bet the name is difficult. My husband's name is and

everybody wants to make it Jeffery. He has to sign a lot of legal documents so I

go through the red tape of getting it fixed a lot. I call him Babe, so it's not

a problem for me, lol.

Your history sounds painffully familier, lots of us here have gone thru simular

progressions of symptoms. I can use a TENS unit on my lower back and have really

good results from that. Now the electrode pads with the sticky stuff is

different for me. That is just a pain in the butt! They either, slide off, get

pulled off on my clothing (causing much dancing and swearing in all the wrong

places) or they eat my skin off. I am hoping to get a spinal stimulator to

hopefully bring all this to a tollerable level.

Sorry for the book, I tend to talk too much on a bunch of drugs, so guess where

I am right now, lol.

Again, welcome!

Lexie

[Guest guest]

Hi Jan,

I'm Jefferie (a lady) welcome to the group. I have DDD also at l4, l5 and s1 and

had l5 break after fusion and had to have emergency surgery to stablize the l5

and a plate put in.

I hope you get some help. I know the pain well.

Jefferie

   JEFF !

From: Jan G <jangil@...>

Subject: Hello

spinal problems

Date: Friday, January 30, 2009, 8:48 AM

Don't know if I have posted yet but my name is Jan and I live in North

Dakota, yes we do have electricity here. I was only 17 when I was working as

a nurses aid, I bent down to pick up a handkerchief and ended up not being

able to stand back up due to pain. I went to a doctor who said it was

Sheuermans (sp), Disease. I would only have aches from time to time until

1984 after I had my second to the youngest daughter (I had already had a set

of twins and a single birth), my doctor did x-rays and told me it was

degenerative disk disease in my lumbar region. In a day or so he called and

said get off all meds #5 is on it's way. During that pregnancy I had

terrible trouble with my back, ended up in the hospital a couple of times,

last 3 months on bed rest to try to carry baby to term. After that until

about 1997 I had off and on pain, while do a data entry job the found DDD

in the Cervical spine, and just for the fun of it he x-rayed the thoracic

(sp) and there was it was.

My doctors have me on Tylenol Arthritis, Oxycodone (as Needed). I also take

flexeril at night. This combination has been working since 1997. Last year

I had to have a Bone Scan done for another condition, they say that the

vertebrae in my neck are starting to stack on top of each other. The doctor

there said he as surprised I could even move my neck. When I see my family

doc on Thursday I am going to ask him for a referral. On Monday I had to

have a nerve block on my shoulder for a surgery. Tues, Wed and Thurs I had

the episodes with my neck where I hear a cracking and feel what I call

shocks in my my neck, once I rubbed it they went away for a bit.

Well that is me

Jan (Fargo)

[Guest guest]

I am so sorry for you ladies, having to go through this kind of stuff. I thought

I was tough with all I have been through, pain, surgeries, and more pain. I just

kept saying it can't get any worst, until it did!!! I sometimes get into a panic

when I start thinking about whats going on with me, reality really sucks

sometimes don't it? Just know that is you do end up in a chair, just look behind

you and see how many more are there to back you up, and or cruise alone besides

you.

I know its hard, believe me I really do know, I keep reminding myself that pain

purifies my soul, I know that may not make sense to anyone else, but for some

reason it helps me.

Take care, and always remember there will always be someone here to help you up

on the soap box  and listen.

May you days come easier.

 

Bama,

 

The dog has seldom been successful in pulling man up to its level of sagacity,

but man has frequently dragged the dog down to his. Thurber

                                                                            

________________________________

From: Sara Saupe <sbs_1975@...>

spinal problems

Sent: Saturday, January 31, 2009 9:27:44 AM

Subject: Re: Hello

Yeah I did it again this morning....only I kind of fell down the stairs

again....ARRRGGGGHH H!!! I am so tired of being clumsy, part of it is the meds,

they make me dizzy and feel like I am drunk. Like this morning I NEED to go to

the bank and I can't drive, I can barely walk....I am just thinking WTF, I am so

sick of this, does it ever end? I mean when I have surgery does it get better?

Will I ever be off pain killers? OMG will I ever be normal again? ARRRGHHHH I am

so sick of feeling this way. I went off the pain killer for like 2 months, and I

couldn't take it anymore I had to tell them I was hurting really bad!! Even now

with the stuff I am on, lyrica & Ultram I am still in pain, ok not as bad, but

still it kills me to walk up the stairs or do a lot of stuff...OMG getting off

the toilet is horrible!

Sorry I am really frustrated!! !

From: Jan G <jangilcableone (DOT) net>

Subject: Re: Hello

spinedisorderssuppo rtgroup@gro ups.com

Date: Friday, January 30, 2009, 12:42 PM

Yes I do have what feels like a cracking, grinding noise. The shocks I

feel are not painful but they radiate from my neck into my head. I had

thought it was related to my Paxil, but I have been off it for 2 weeks and I

had the shocks on tues-thurs. I don't think it is withdrawal.

Jan (Fargo)

[Guest guest]

Thanks for the support. I am very lucky I have a good support system here. It is

just hard to not be able to do things that were so easy and like second nature

to me. Now, I am afraid to a lot of things, b/c I am not supposed as per Dr. or

I am scared to death of doing something more to hurt myself! It is nice to come

on here and " talk " to people who are going through or have gone through the same

things. So Thanks for being here!!

From: Jan G <jangilcableone (DOT) net>

Subject: Re: Hello

spinedisorderssuppo rtgroup@gro ups.com

Date: Friday, January 30, 2009, 12:42 PM

Yes I do have what feels like a cracking, grinding noise. The shocks I

feel are not painful but they radiate from my neck into my head. I had

thought it was related to my Paxil, but I have been off it for 2 weeks and I

had the shocks on tues-thurs. I don't think it is withdrawal.

Jan (Fargo)

[Guest guest]

I am so sorry to hear about your surgeries. I have also had two

surgeries since July. Both Surgeries were on L4 L5. So, I can

understand what you are going through. My 2nd surgery was just Ithis

past January 26th. I was not prepared at all for the pain. It was

really rough! In fact, I am still having a super rough time. I am

starting to think this could just turn into a domino affect. I am

praying for no more surgeries!!!!! I will pray the same for you! April

-- In spinal problems , " babyjff2002 "

<babyjff2002@...> wrote:

>

> I have 2 sugeries since July.The first was for l4, l5, s1 fusion

> because of herniated discs and ddd. I had the postier and anterior

> surgery. Yipes, I wasn't prepared for that pain and recovery.

Terrbile.

> In Oct I had emergency surgery becasuse l5 broke into the spinal

canal

> and I had an inpingement of the cord and sicatic nerve. I have

spinal

> stenosis also. That surgery wasn't as painful as the first,

however,

> the sicatic nerve hasn't recovered and am scheduled for my first

app.

> tomorrow with the complex pain dr. as I now have complex pain

reflex

> syndrome.

> You know, this whole thing is going bad to worse.

> Help.

> My name is Jefferie and I am a 62 retired lady . My name causes

alot of

> confusion.

>

[Guest guest]

I agree with you on that domino effect. My PM agrees also, he thinks I should

just wait and see, try to control the pain, because those surgery's just create

more problems, unless its an emergency, it should be the last resort. After a

few years my post surgical pains have settled down some, but anyone having to

have spinal surgery's, IMO will always have to deal with some sort of pain.

Of course it's just my opinion, I am not a Dr...

I hope ya'll can find some relief from this nightmare.

 

Bama,

 

The dog has seldom been successful in pulling man up to its level of sagacity,

but man has frequently dragged the dog down to his. Thurber

                                                                            

________________________________

From: youthpastor0759 <nanny04@...>

spinal problems

Sent: Friday, February 6, 2009 8:00:42 PM

Subject: Re: Hello

I am so sorry to hear about your surgeries. I have also had two

surgeries since July. Both Surgeries were on L4 L5. So, I can

understand what you are going through. My 2nd surgery was just Ithis

past January 26th. I was not prepared at all for the pain. It was

really rough! In fact, I am still having a super rough time. I am

starting to think this could just turn into a domino affect. I am

praying for no more surgeries!!! !! I will pray the same for you! April

-- In spinedisorderssuppo rtgroup@gro ups.com, " babyjff2002 "

<babyjff2002@ ...> wrote:

>

> I have 2 sugeries since July.The first was for l4, l5, s1 fusion

> because of herniated discs and ddd. I had the postier and anterior

> surgery. Yipes, I wasn't prepared for that pain and recovery.

Terrbile.

> In Oct I had emergency surgery becasuse l5 broke into the spinal

canal

> and I had an inpingement of the cord and sicatic nerve. I have

spinal

> stenosis also. That surgery wasn't as painful as the first,

however,

> the sicatic nerve hasn't recovered and am scheduled for my first

app.

> tomorrow with the complex pain dr. as I now have complex pain

reflex

> syndrome.

> You know, this whole thing is going bad to worse.

> Help.

> My name is Jefferie and I am a 62 retired lady . My name causes

alot of

> confusion.

>

[Guest guest]

Hi ,

I've a probably half a dozen SI joint injections along with countless epidurals,

facet injections, prolo therapy and a couple of RF nerve oblations. Any deep

injection is unpleasant but of all I've had, the SI joint injections were

actually the easiest to tolerate without any sedation. I was surprised though

when I went in for the last facet injection following my re-injury. I thought it

would be easy to get through with ought sedation but once begun, oh...how I wish

I had asked for something before hand.

The doc who I really trust told me afterwards that one's ability to 'tough it

out' can diminish over repeated treatments and from now on he'd make sure I

would be pre-medicated. In my mind it just makes things easier for everyone

including the doctor. I was knocked out for the nerve oblations... well at least

for the most painful part, but in my mind prolo therapy is the absolute worse! (

these were administered by another pain specialist that I will refuse to go see

again.) I know it must work for some people but I sure don't recommend it from

my experience. Anyways, SI joint injections either given blind or preformed

under fluoroscopy though unpleasant are nothing to dread and can really help!!

Very best wishes,

Calvin

Hello

I just wanted to know if anyone has had the sacroiliac joint

injections? I have had the upidural ones and to me it was quite

painful. I am thinking these might be more painful since they have to

go deeper? Any advice for me? thanks so much .....

[Guest guest]

Thanks both of you for your posts; Freels started this list because of his

quest to get Medicare to approve HBOT treatment for his son with a TBI. I have

had a " mild " TBI which was pretty disabling, and after searching and researching

for about a year, I found a clinic and got 40 HBOT treatments about a year ago.

I believe I continue to see improvement from the treatment, and began to see

early improvements even after my first week of treatment.

We are fortunate to have this email list, to compare notes, organize to advocate

for HBOT to be paid for by Medicare and Medicaid as well as private insurance,

and to provide information and support to one another.

God bless, and best wishes for your family members with TBI. The milder the

injury or the more diffuse the injury, the quicker the recovery, but you have

good reason to have hope for change for the better. In some cases it can be

quite dramatic.

Best regards,

> From: stephanividrine@... <stephanividrine@...>

> Subject: [ ] Hello

> medicaid

> Date: Monday, March 2, 2009, 9:15 AM

> Hello , yes it is very nice to see that there is another

> person

> that is going thru what i am too...When i first brought him

> home i

> searched the internet for spouse support brain injury only

> found

> children, relative, or single people support. Yes we had a

> 5 hour

> drive too!! 6 hours actually when you count the breaks

> along the way.

> To keep my husband and our 2 kids, (2 year old and a 3 year

> old)sane

> we did something once a week on the weekend, go to a musem,

> the park

> (we went there everyday while brian was getting his

> treatments), the

> zoo, though you are wayy up there i bet it is still very

> cold huh.

> Anyways try to enjoy the area if you can! we even were able

> to enjoy

> eating out on the odd hours during the week we get great

> deals at

> restruants cheap! God bless you , prayers to you and

> your family

> and always faith Hebrews 11:1 Now faith is assurance of

> things hoped

> for, a conviction of things not seen.

>

>

> >

> >

> > Hi Stephani,

> >

> > You are as far away as the United States allows us to

> be. We are

> in Michigan...the tippy top of the lower penninsula. My

> husband has

> a severe TBI also. It is always nice to know someone who

> can

> relate. I have a 5 1/2 hour drive to Detroit where we are

> going for

> our HBOT treatments...Not easy to pack a whole room of

> equipment and

> go, but it sure is worth the benefits. I hope and pray the

> results

> of all your efforts pay off and that your husband is aware

> of how

> much he is loved. God bless and strengthen you both.

> >

> >

> >

> > and Wayne Greenwood

> >

> >

> >

> >

> > >

[Guest guest]

I am so glad i could direct you to the group. this is Elaina so that you will

know my email when i post Cort, I hope this opens up a lot of doors for you, and

you have a sucess to find others on here. Once again, get well!

Elaina

From: Cortney <wright_cortney@...>

Subject: [ ] Hello

" Support Group " < >

Date: Saturday, March 28, 2009, 3:40 PM

Hi,

    My name is Cortney and I live in Illinois. I've had Lyme Disease for

two and a half years and I would like to ask, How do you cope with what we have?

I know that i read books and try to get out and go see a movie. How do you keep

up with schoolwork? I'm about a month and a half behind in every one of my

subjects at school and I'm a junior in highschool. I've missed most of the days

of my highschool enrollment and lost all of my friends and am looking for

someone who can relate to what I've been through. It took us two years to find

out i had lyme disease because doctors in illinois are blind to it. i look

forward to hearing back from someone!

Cortney

[Guest guest]

Cortney, when it starts to get to be this much of a problem, it's a

clear sign that you need to make serious changes in your life. You

have a very real and disabling disease that is absolutely demanding

that you re-arrange your life around it. You can either waste your

strength fighting this fact, or accept it and start to find ways to

make your life with Lyme workable. Trust me: you'll get a lot farther

by leaning into this and making room for it than you will trying to

fight it.

If you're that far behind in school (especially at this stage of the

school year) then you, your parents, and the school district need to

be having some serious conversations about how to make this more

manageable for you. I'm sure you're aware that independent

instruction/ home study is an option most districts are set up to

offer kids who are housebound due to illness. They'll usually assign

you a teacher who oversees your work. You do it at home, usually

online, at a pace you can manage. These programs were set up exactly

for kids like you, and it's time to take advantage of them.

Alternatively, you might consider what can be done to make your

standard school day more workable. I do hope you've dropped PE and

athletics: if you're this sick, you need all your strength just to

keep up with the rest of your life. (Your doctor will write a letter

excusing you, if needed.) Maybe there's a middle ground where they'll

let you take some of your courses at school, and some from home. That

way, you could arrange for a shorter class day (maybe morning through

lunch, or late morning through the end of the day), which would allow

you to stay in the social flow but also gear down on the amount of

stress you're under.

As for your social life: I coped by taking mine online as much as

possible. Social networking stuff is a boon for people like us. You

can stay in regular touch with friends even when you're not up to

being around them; and can take incoming contact at your own pace when

you are up to it. (And if I may say -- it was damned crappy of your

friends to wander off on you -- but consider that you may be better

off without people who are that superficial in your life. That's not

what real friends do.) You might also work with your parents and any

remaining friends to make sure you've got a regular outing or two

every week -- some activity (like a regular Friday night movie night)

that will get you out and keep you engaged with the world. There are

also online teen Lyme communities where you can find daily connection

and support from people who are in the same situation. Your social

needs are as real and valid as your need for education and your need

for a sustainable pace of life, and it's worth giving some realistic,

strategic thought as to how you're going to get them met.

This can be done. I denied my illness for a full decade before finally

admitting I needed to re-arrange my life around my insatiable need for

rest. And in that time, I made a real mess of things, because I

refused to let go of anything. My real healing began when I started

taking these physical demands with the deadly seriousness they

deserved, and moved the furniture of my life around to make room for

them. For most of the last decade, I've lived much of my life from bed

-- maintaining a happy marriage, raising two great kids, earning a

grad school degree, and (miraculously) restarting an entirely online

career that's even more fabulous than the one I had to give up 12

years ago (which, if I do say so, was pretty damned fabulous). Since

then, I've also gotten physically better year over year -- even before

my Lyme was finally diagnosed last year.

You can gear back and still have a very satisfying life. It won't be

the same life; but you need to believe that it will be one worth

having. The main thing is to figure out what your real priorities are

in life -- and then hold on tight to them, cherish them for all you're

worth, and don't let anything get in between you and them. You have to

give yourself reasons to keep going -- things to look forward to,

goals to be achieved. If the Lyme causes depression, don't let it go

untreated, because if you lose your will to go on, that's when you're

at risk of losing it all.

This disease is an evil, evil thing. It's stolen half of my 50 years

from me, and I could get good and angry about that. It has taken my

youth, my strength, and my career. But I'll be damned if I let it

take away my will to live life to the fullest without one hellacious

red-headed fight.

Sara

On Mar 28, 2009, at 12:40 PM, Cortney wrote:

> Hi,

> My name is Cortney and I live in Illinois. I've had Lyme

> Disease for two and a half years and I would like to ask, How do you

> cope with what we have? I know that i read books and try to get out

> and go see a movie. How do you keep up with schoolwork? I'm about a

> month and a half behind in every one of my subjects at school and

> I'm a junior in highschool. I've missed most of the days of my

> highschool enrollment and lost all of my friends and am looking for

> someone who can relate to what I've been through. It took us two

> years to find out i had lyme disease because doctors in illinois are

> blind to it. i look forward to hearing back from someone!

>

> Cortney

>

>

[Guest guest]

hello elaina. thank you for getting me in this group. i was worried i did

something wron when i joined. i'm also hoping it opens up doors for me. is

everything okay your way? you weren't on AIM last night.

From: Elaina <nhgirlloveshorses@...>

Sent: Sunday, March 29, 2009 9:15:05 PM

Subject: Re: [ ] Hello

I am so glad i could direct you to the group. this is Elaina so that you will

know my email when i post Cort, I hope this opens up a lot of doors for you, and

you have a sucess to find others on here. Once again, get well!

Elaina

[Guest guest]

Dear Sara,

    Thank you for replying. I am trying very hard to get on with my life and

trying very hard to go to school. I've done the one-on-one tutoring before and

honestly, it wasn't much help. I only got an hour a day with the tutor and the

school isn't really open to much else for options. We have a very small school

and a very small staff, and honestly, i really doubt that our school could

afford to hire someone online, or by any other means to get my education. some

teachers have been very helpful. most of the time i do good by getting homework

done in a couple of my classes. you know, like, us history or clothing (very

easy course) or english. yes, i have dropped p.e. i dropped p.e. my freshman

year when i got sick. i noticed right off that physical exercise was bad for my

condition. My doctor has written one excuse that excuses all days that i miss

from school and it excuses my p.e. class. I'm not in much stress. I've crossed

that out of my life and

learned that being sick shouldn't cause me to be depressed. Grant it, i was

depressed for a while when i couldn't make it to school and be in class, and

play basketball (which is my passion), and hang out with my friends, or even

just be a regular fourteen year old girl. i'm passed that stage now. your e-mail

helped me very much. it made me more determined to be the winner over this

disease which is my biggest foe. i'm not going to lay around in bed again

tomorrow, i'm going to go to school. if i can't make it all day, mom will pick

me up sometime after lunch (i'd much rather go in in the afternoon when i have

my toughest class, but since we live about 10-11 miles outside of town, gas

prices resent it). once again thank you so, so much for e-mailing me.

Sincerely,

Cortney

p.s. i feel so bad that you had to put up with lyme for 10 years before you

finally found out what was wrong with you. i thought my two years was long.

p.s.s. my weekend activities consist of one movie and maybe a trip to wal-mart.

i'm slowly getting back out there.

________________________________

From: Sara <srobinson@...>

Sent: Sunday, March 29, 2009 11:02:10 PM

Subject: Re: [ ] Hello

Cortney, when it starts to get to be this much of a problem, it's a

clear sign that you need to make serious changes in your life. You

have a very real and disabling disease that is absolutely demanding

that you re-arrange your life around it. You can either waste your

strength fighting this fact, or accept it and start to find ways to

make your life with Lyme workable. Trust me: you'll get a lot farther

by leaning into this and making room for it than you will trying to

fight it.

If you're that far behind in school (especially at this stage of the

school year) then you, your parents, and the school district need to

be having some serious conversations about how to make this more

manageable for you. I'm sure you're aware that independent

instruction/ home study is an option most districts are set up to

offer kids who are housebound due to illness. They'll usually assign

you a teacher who oversees your work. You do it at home, usually

online, at a pace you can manage. These programs were set up exactly

for kids like you, and it's time to take advantage of them.

Alternatively, you might consider what can be done to make your

standard school day more workable. I do hope you've dropped PE and

athletics: if you're this sick, you need all your strength just to

keep up with the rest of your life. (Your doctor will write a letter

excusing you, if needed.) Maybe there's a middle ground where they'll

let you take some of your courses at school, and some from home. That

way, you could arrange for a shorter class day (maybe morning through

lunch, or late morning through the end of the day), which would allow

you to stay in the social flow but also gear down on the amount of

stress you're under.

As for your social life: I coped by taking mine online as much as

possible. Social networking stuff is a boon for people like us. You

can stay in regular touch with friends even when you're not up to

being around them; and can take incoming contact at your own pace when

you are up to it. (And if I may say -- it was damned crappy of your

friends to wander off on you -- but consider that you may be better

off without people who are that superficial in your life. That's not

what real friends do.) You might also work with your parents and any

remaining friends to make sure you've got a regular outing or two

every week -- some activity (like a regular Friday night movie night)

that will get you out and keep you engaged with the world. There are

also online teen Lyme communities where you can find daily connection

and support from people who are in the same situation. Your social

needs are as real and valid as your need for education and your need

for a sustainable pace of life, and it's worth giving some realistic,

strategic thought as to how you're going to get them met.

This can be done. I denied my illness for a full decade before finally

admitting I needed to re-arrange my life around my insatiable need for

rest. And in that time, I made a real mess of things, because I

refused to let go of anything. My real healing began when I started

taking these physical demands with the deadly seriousness they

deserved, and moved the furniture of my life around to make room for

them. For most of the last decade, I've lived much of my life from bed

-- maintaining a happy marriage, raising two great kids, earning a

grad school degree, and (miraculously) restarting an entirely online

career that's even more fabulous than the one I had to give up 12

years ago (which, if I do say so, was pretty damned fabulous). Since

then, I've also gotten physically better year over year -- even before

my Lyme was finally diagnosed last year.

You can gear back and still have a very satisfying life. It won't be

the same life; but you need to believe that it will be one worth

having. The main thing is to figure out what your real priorities are

in life -- and then hold on tight to them, cherish them for all you're

worth, and don't let anything get in between you and them. You have to

give yourself reasons to keep going -- things to look forward to,

goals to be achieved. If the Lyme causes depression, don't let it go

untreated, because if you lose your will to go on, that's when you're

at risk of losing it all.

This disease is an evil, evil thing. It's stolen half of my 50 years

from me, and I could get good and angry about that. It has taken my

youth, my strength, and my career. But I'll be damned if I let it

take away my will to live life to the fullest without one hellacious

red-headed fight.

Sara

On Mar 28, 2009, at 12:40 PM, Cortney wrote:

> Hi,

> My name is Cortney and I live in Illinois. I've had Lyme

> Disease for two and a half years and I would like to ask, How do you

> cope with what we have? I know that i read books and try to get out

> and go see a movie. How do you keep up with schoolwork? I'm about a

> month and a half behind in every one of my subjects at school and

> I'm a junior in highschool. I've missed most of the days of my

> highschool enrollment and lost all of my friends and am looking for

> someone who can relate to what I've been through. It took us two

> years to find out i had lyme disease because doctors in illinois are

> blind to it. i look forward to hearing back from someone!

>

> Cortney

>

>

[Guest guest]

To go along with all that you just said sara, First of all i admirey your

strength and encouragement towards this illness. i too have a similar situation

as Cortney when it comes tot he fact that i suffered a year, lost all my

popularity and friends,etc, because noone could realize te pain i was in, and I

still managed to try and work with them. i fought and fought to have us get

together, with all energy Lyme left me with and they turned me down, refusing to

make and effort towards keeping our relationships. That is when My eyes were

opened as you say to networking with other teens with Lyme. This has kept me

busy, satisfied, and educated, and I will never let go of the great friends I

have gained through this experience, like !

I have a nation wide list of friends and was contacted by her to direct her here

for people like you who can give her the proper encouragemnet that she needs!

When it comes to the schooling, for 1 year i tried half days, tutors, the whole

mix including looking into online schooling. The school didn't want to excpet my

differences and tried to push me off of there hands. My strength through that

emotional pain I felt by being disliked by them was that i was paving the way

for others in the school later on with this illness. We eventually realized they

were not budging, and just wanted there part to be easy and simple, they would

not work for me to be classified a student and so this year we pulled me out to

do 8th grade at home. The high school i am looking at for rejoining next year is

super sweet, but I have issues with this traumatization from 1 and1/2 year ago

when we were at the begining of 7th grade.

The homeschooling is the best relief I have ever gotten from overloading school

work, from disaproving friends, from uninterested teahers, the whole package! My

mom didn't want to speperate me from the school loop, from the civilazation

basically, but after i convinced her we both deicided it was best for us to come

to grips with the journey agead, and I feel much relaxed now!

I urge anyone and everyone to take care of themselves doing the best for them.

, from our conversation the other day i urge you to look into seriously

a homeschool type of thing, because it was too difficult for us to fight with

tudors, teachers,and principals!

The homeschool enable s me to sleep in, wake up, do my work, and just sift

through the day relaxed. you can skip all the projects and labs shananigans

unless you feel it important and just take in the information independently. I

manage to catch up qicker, etc. amd I don't have to tak more than 30 minutes a

day to keep up with each subject!

Elaina

Elaina

> Hi,

> My name is Cortney and I live in Illinois. I've had Lyme

> Disease for two and a half years and I would like to ask, How do you

> cope with what we have? I know that i read books and try to get out

> and go see a movie. How do you keep up with schoolwork? I'm about a

> month and a half behind in every one of my subjects at school and

> I'm a junior in highschool. I've missed most of the days of my

> highschool enrollment and lost all of my friends and am looking for

> someone who can relate to what I've been through. It took us two

> years to find out i had lyme disease because doctors in illinois are

> blind to it. i look forward to hearing back from someone!

>

> Cortney

>

>

[Guest guest]

Elaina, thanks for bringing up homeschooling. I homeschooled my son,

who is severely dyslexic (yes, we're getting him tested for Lyme --

results back next week), for the first seven years. This proved to be

a good solution for us, too. As you say: simply not having to deal

with the system any more was, in itself, a huge relief. We could just

kick back and focus on the things he really needed (special tutoring,

for example) and was ready for. He's 16 now, and reading, and his

teachers and summer-job bosses just love him. He's going to be just

fine. (And he's quite the cutie, too.)

The business with the schools not cooperating is frustrating. It's

also very deeply illegal, under a law call IDEA (Individuals with

Disabilities Education Act). If you've got the energy for the fight,

it's possible to find attorneys who will make a lazy school district

do what they're required to do under law, which is to give you a full,

free, comprehensive, and appropriate education. If they can't do that,

then they need to pay for your education at an appropriate private.

School districts are always strapped for cash, so they do everything

in their power (as you've noticed) to make people like you and their

parents drop out and go away before they figure all this out -- but if

you know your rights and are willing to get an attorney involved,

they'll usually stop balking (it's cheaper than getting sued). It

sounds like Cortney is getting seriously short-changed, and this may

be one way to fix that. The fact that she's so far behind is de facto

proof that she's not getting an appropriate education, and they are

failing in their duty to her.

There's also a very well-regarded distance learning private school on

the east coast called The Calvert School that's supposed to have an

amazing online curriculum. It was set up for the children of globe-

trotting diplomats, but now serves a lot of disabled kids as well. We

know people who've used their services, and been very happy with them.

Another option -- particularly if you can get your school district to

pay for it. There are other public and private schools that also offer

accredited online high school programs -- it's something to look into.

As long as you have a Web connection, you're not stuck with the local

options.

I got my entire MS online -- am finishing my final semester this

month, and after that will only need to complete a thesis project. The

university is 2800 miles away, in another country, in a city I've

never set foot in in my life. (I think I may fly down for graduation,

though.) More and more universities are offering this option, which

even makes college more accessible to us. The degree is now leading to

amazing job offers, most of which I can also do from bed (and abroad

-- I live in Canada). This is a life I could not have even imagined

four years ago.

We focus a lot on how hard this illness is to live with. But if we're

creative -- and blessed with a little bit of support -- there's a lot

we can do to adapt and make a pretty good life out of it anyway.

I googled myself last night. I'm the very top " Sara " that

pops up. Guess that's some measure of how well it's going for me now,

in spite of it all.

Sara

On Mar 30, 2009, at 11:11 AM, Elaina wrote:

> To go along with all that you just said sara, First of all i admirey

> your strength and encouragement towards this illness. i too have a

> similar situation as Cortney when it comes tot he fact that i

> suffered a year, lost all my popularity and friends,etc, because

> noone could realize te pain i was in, and I still managed to try and

> work with them. i fought and fought to have us get together, with

> all energy Lyme left me with and they turned me down, refusing to

> make and effort towards keeping our relationships. That is when My

> eyes were opened as you say to networking with other teens with

> Lyme. This has kept me busy, satisfied, and educated, and I will

> never let go of the great friends I have gained through this

> experience, like !

>

> I have a nation wide list of friends and was contacted by her to

> direct her here for people like you who can give her the proper

> encouragemnet that she needs!

>

> When it comes to the schooling, for 1 year i tried half days,

> tutors, the whole mix including looking into online schooling. The

> school didn't want to excpet my differences and tried to push me off

> of there hands. My strength through that emotional pain I felt by

> being disliked by them was that i was paving the way for others in

> the school later on with this illness. We eventually realized they

> were not budging, and just wanted there part to be easy and simple,

> they would not work for me to be classified a student and so this

> year we pulled me out to do 8th grade at home. The high school i am

> looking at for rejoining next year is super sweet, but I have issues

> with this traumatization from 1 and1/2 year ago when we were at the

> begining of 7th grade.

>

> The homeschooling is the best relief I have ever gotten from

> overloading school work, from disaproving friends, from uninterested

> teahers, the whole package! My mom didn't want to speperate me from

> the school loop, from the civilazation basically, but after i

> convinced her we both deicided it was best for us to come to grips

> with the journey agead, and I feel much relaxed now!

>

> I urge anyone and everyone to take care of themselves doing the best

> for them. , from our conversation the other day i urge you

> to look into seriously a homeschool type of thing, because it was

> too difficult for us to fight with tudors, teachers,and principals!

>

> The homeschool enable s me to sleep in, wake up, do my work, and

> just sift through the day relaxed. you can skip all the projects and

> labs shananigans unless you feel it important and just take in the

> information independently. I manage to catch up qicker, etc. amd I

> don't have to tak more than 30 minutes a day to keep up with each

> subject!

>

> Elaina

>

[Guest guest]

I will talk with you through private email, but I am well and I am glad you

figured out the support group here. you'll find a lot of people are welcoming

and can give you fgreat feedback for any questions or issues you come across.

I will TTYL

Elaina

From: Cortney <wright_cortney@...>

Subject: Re: [ ] Hello

Date: Monday, March 30, 2009, 1:36 PM

hello elaina. thank you for getting me in this group. i was worried

i did something wron when i joined. i'm also hoping it opens up doors for me. is

everything okay your way? you weren't on AIM last night.

[Guest guest]

In a message dated 3/31/2009 11:32:46 P.M. US Mountain Standard Time,

srobinson@... writes:

The business with the schools not cooperating is frustrating. It's

also very deeply illegal, under a law call IDEA (Individuals with

Disabilities Education Act). If you've got the energy for the fight,

it's possible to find attorneys who will make a lazy school district

do what they're required to do under law, which is to give you a full,

free, comprehensive, and appropriate education. If they can't do that,

then they need to pay for your education at an appropriate private.

*******You can go after their federal funding if they are doing this

illegal....that will stop them in their tracks....

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(http://pr.atwola.com/promoclk/100126575x1220631247x1201390185/aol?redir=http:%2\

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[Guest guest]

I am glad you are getting your son tested. It is a very big step to possibly

accept that your child may have something, its even harder when the results come

in although it may be GREAT!

Homeschooling is a relief, and I have looked into all online courses, and I am

actually doing VLACS algebra, they do AP courses and college courses so i can

handle that since i am more advanced. My cousin is 16 with Dislexia, she has a

really difficult time but they do homeschool now and found it much easier too!

well I am glad you are going to possibly go for the graduation. i think that

would be a neat experience!

Everyone would be like, where did that person come from?....lol

Elaina

From: Sara <srobinson@...>

Subject: Re: [ ] Hello

Date: Monday, March 30, 2009, 6:25 PM

Elaina, thanks for bringing up homeschooling. I homeschooled my son,

who is severely dyslexic (yes, we're getting him tested for Lyme --

results back next week), for the first seven years. This proved to be

a good solution for us, too. As you say: simply not having to deal

with the system any more was, in itself, a huge relief. We could just

kick back and focus on the things he really needed (special tutoring,

for example) and was ready for. He's 16 now, and reading, and his

teachers and summer-job bosses just love him. He's going to be just

fine. (And he's quite the cutie, too.)

The business with the schools not cooperating is frustrating. It's

also very deeply illegal, under a law call IDEA (Individuals with

Disabilities Education Act). If you've got the energy for the fight,

it's possible to find attorneys who will make a lazy school district

do what they're required to do under law, which is to give you a full,

free, comprehensive, and appropriate education. If they can't do that,

then they need to pay for your education at an appropriate private.

School districts are always strapped for cash, so they do everything

in their power (as you've noticed) to make people like you and their

parents drop out and go away before they figure all this out -- but if

you know your rights and are willing to get an attorney involved,

they'll usually stop balking (it's cheaper than getting sued). It

sounds like Cortney is getting seriously short-changed, and this may

be one way to fix that. The fact that she's so far behind is de facto

proof that she's not getting an appropriate education, and they are

failing in their duty to her.

There's also a very well-regarded distance learning private school on

the east coast called The Calvert School that's supposed to have an

amazing online curriculum. It was set up for the children of globe-

trotting diplomats, but now serves a lot of disabled kids as well. We

know people who've used their services, and been very happy with them.

Another option -- particularly if you can get your school district to

pay for it. There are other public and private schools that also offer

accredited online high school programs -- it's something to look into.

As long as you have a Web connection, you're not stuck with the local

options.

I got my entire MS online -- am finishing my final semester this

month, and after that will only need to complete a thesis project. The

university is 2800 miles away, in another country, in a city I've

never set foot in in my life. (I think I may fly down for graduation,

though.) More and more universities are offering this option, which

even makes college more accessible to us. The degree is now leading to

amazing job offers, most of which I can also do from bed (and abroad

-- I live in Canada). This is a life I could not have even imagined

four years ago.

We focus a lot on how hard this illness is to live with. But if we're

creative -- and blessed with a little bit of support -- there's a lot

we can do to adapt and make a pretty good life out of it anyway.

I googled myself last night. I'm the very top " Sara " that

pops up. Guess that's some measure of how well it's going for me now,

in spite of it all.

Sara

[Guest guest]

Hi Bobby,

I also have lumbar and cervical issues. Sometimes I feel as if my pain is tag

teaming me...I start getting relief in my back and my neck starts. Right now

it's the neck. The doctors want to try nerve ablation on four of the joints in

my neck. I've had surgeries but have never been this route (so if anyone else

has had this please let me know how it turned out for you). I too would love to

be able to not take so much medication.

Good luck to you and welcome to the group.

Barb

>

> hi i am bobby.when i was 12 i broke my neck.and in my 20`s i had to have

surgery on my lower back.i have a lot of pain in my lower back.but recently ,i

have been having a rather bad flare up of my neck.it is really uncomfortable.i

can`t sit ,stand at all.i have been in some much pain that i actually become

sick.i recently went to my doctor about it and he gave me loratabs,i hate the

idea of taking them,i just hope they work.

>

[Guest guest]

Hi Bobby,

I also have lumbar and cervical issues. Sometimes I feel as if my pain is tag

teaming me...I start getting relief in my back and my neck starts. Right now

it's the neck. The doctors want to try nerve ablation on four of the joints in

my neck. I've had surgeries but have never been this route (so if anyone else

has had this please let me know how it turned out for you). I too would love to

be able to not take so much medication.

Good luck to you and welcome to the group.

Barb

>

> hi i am bobby.when i was 12 i broke my neck.and in my 20`s i had to have

surgery on my lower back.i have a lot of pain in my lower back.but recently ,i

have been having a rather bad flare up of my neck.it is really uncomfortable.i

can`t sit ,stand at all.i have been in some much pain that i actually become

sick.i recently went to my doctor about it and he gave me loratabs,i hate the

idea of taking them,i just hope they work.

>

[Guest guest]

Hi Bobby,

Keep writing. Keep asking questions. You'll find good people here who

can offer help.

On Apr 17, 2009, at 11:41 AM, frazmandemo wrote:

hi i am bobby.when i was 12 i broke my neck.and in my 20`s i had to

have surgery on my lower back.i have a lot of pain in my lower

back.but recently ,i have been having a rather bad flare up of my

neck.it is really uncomfortable.i can`t sit ,stand at all.i have been

in some much pain that i actually become sick.i recently went to my

doctor about it and he gave me loratabs,i hate the idea of taking

them,i just hope they work.

------------------------------------