Re: Hey Kirk

[Guest guest]

Hey Kirk-

I am up... Can't sleep as usual. You know what my skin gets this weird sensation

like nothing can touch it. It hurts sooo much to even have a sheet on me. I

hate it. I usually get it when I am flaring pretty bad.

I've been reading your posts lately. How are feeling? It sucks that you are

having such a crappy time. Sorry to hear it. It has been a long road for you.

Hang in there. ( i know that you have heard that a million times, LOL)

I was in complete and utter pain for about 7 years and I am just NOW starting to

feel some relief. I was diagnosed when I was 25 and my son was just 6 months

old. I really feel for all of us that have kids, becuz this disease really

effects the kids. My son, poor thing, had to deal with so much disappointment.

He wants me there for everything and I try, really hard, but I don't always get

to be there. I really hope this isn't going to " F " him up when he is older.

Anyway- I just wanted to let you know that I too cannot sleep. So you are not

alone.

What time is it there? It is 2 am here.

Love and Support,

Keri in CA

ot

Anyone else awake?????? I'll be up for a bit....my back feels like someone

is holding a blow-torch to it!!! Anyone ever get the sensation that their

skin feels as if ti is literally burning????? Kirik

--

Everything in life sucks except things that should!

[Guest guest]

Keri..it is 5:00 AM now, though I've been mostly awake since 3:00. I must

admit in all honesty that though I complain now, I'm doing much better than

I was when I 1st was nailed. Now the damage is showing up...and the

headaches haven't really changed, just lightened up a tiny amount (either

that or I've learned to handle them better, I do not know which).

Surprisingly for me I'm able to do most of what I want in the summer. For

some unkown reason.....I do half decent in the summer. I'm able to walk

better & further, I'm not as tired (though far from where I used to be) and

I'm able to do much with my kids, even help coach mini football. My kids

seem to handle it incredibly well, and I'm thankful for that.

I get the same feeling you described...whatever part of my body is

touching the bed seems to be " on fire " ....than it takes me 15 minutes to be

able to get out of bed, stand around until I can move a bit...and than go

back to bed. The joint pain sucks ass! I wear a TENS unit during the day

which seems to help certain areas, but I can't seem to be able to find out

who is supposed to pay for them, and I'm almost out. My partd D ins. told me

I had to call Medicare....Medicare has no idea and wants me to contact the

supplier to submit a claim to see if it will be approved. All I want is an

answer. I know the patches and stuff are as expensive as hell as I used to

see the bills my regular insurance had to pay before I had Medicare.

I must admit one thing...I wish I could work full time and have normal

insurance...as this Medicare + Part D ( & in my case a Medi-Gap policy to

protect me from the high co-insurance bills) sucks!!!! They fight you tooth

& nail, dental isn't available and I have a tootht that has to

go......sorry...I'm ranting again.

Maybe someone from the list will read this and know some of the answers.

I have to try and go back to bed. Have a good night Keri.

PS. Do as much as you can with your kid(s)...I'm sure they understand

already or will in the future.

Adios,Kirk.

>

> Hey Kirk-

> I am up... Can't sleep as usual. You know what my skin gets this weird

> sensation like nothing can touch it. It hurts sooo much to even have a sheet

> on me. I hate it. I usually get it when I am flaring pretty bad.

> I've been reading your posts lately. How are feeling? It sucks that you

> are having such a crappy time. Sorry to hear it. It has been a long road for

> you. Hang in there. ( i know that you have heard that a million times, LOL)

> I was in complete and utter pain for about 7 years and I am just NOW

> starting to feel some relief. I was diagnosed when I was 25 and my son was

> just 6 months old. I really feel for all of us that have kids, becuz this

> disease really effects the kids. My son, poor thing, had to deal with so

> much disappointment. He wants me there for everything and I try, really

> hard, but I don't always get to be there. I really hope this isn't going to

> " F " him up when he is older.

> Anyway- I just wanted to let you know that I too cannot sleep. So you are

> not alone.

> What time is it there? It is 2 am here.

>

> Love and Support,

> Keri in CA

>

> ot

>

> Anyone else awake?????? I'll be up for a bit....my back feels like someone

> is holding a blow-torch to it!!! Anyone ever get the sensation that their

> skin feels as if ti is literally burning????? Kirik

>

> --

> Everything in life sucks except things that should!

>

>

[Guest guest]

Goodmorning Keri:

I was diagnosed when my son was 2 years old. He's now 15 and I can

tell you from experience you won't " F " him up, he will " get used

this " situation as a normal part of his life. Yes, there will be

times you won't be able to do something(s) but he will grow to

understand, if he doesn't all ready. In all honesty, I'm not sure

how long you've had to deal with the dragon.

My first 5 years were the hardest but my son was more of a trooper

than my husband at times. The kid was helpful, understanding (for

the most part) and rather enjoyed doing things with me at home such

as help me cook, clean (we made it a game), laundry, etc. I have to

admit he's got that teenager attitude but still helps around the

house when the moods strikes him.

You will get through this. Take care and be well.

Ellen