random thoughts

[Guest guest]

Thanks Mindy for your thoughts. More thoughts would be appreciated. The

Australian system is so different from the US i can see. Is there a book

that deals with the siblings coping with autistic brothers/sisters??? i'm

sure there would be. my oldest daughter is a terrific reader, so maybe it is

time for her to read as well as me. cheryl

random thoughts

Hi all -

Just got home, got to start school today, and I'm really excited! (I'm a

school psychologist/autism representative.) I got to " pop " into a high

school class to see how a student was doing, she was really nervous.

Another student with Asperger's that I work with was " freaked out " that I

was in there. He kept turning around, checking me out, trying to talk to

me. Finally I wrote a little post-it note on his desk which said " I'm not

here to watch you. Try to ignore me. " He turned around, and rather loudly

said " I CAN'T ignore you, you're standing in the back of the room. Only the

teacher stands. " Good point, so after I stopped laughing I found an empty

desk and sat. He was much happier after that!

Just a few thoughts from a school perspective on some of your postings from

today.

1) We appreciate being notified of things that happen on the bus. Teasing

is unfortunately too common, and I think schools need to take a somewhat

" tough " stance on it. I'm glad you got a positive response from the school,

and that they followed through that quickly!

2) The eating with a fork and spoon is a very common difficulty. I would

consult with an O/T, especially if they have some background in some of the

sensory difficulties that your child may be facing. Also, depending on how

old your child is, you may want to use a social story to address why and

when to use silverware. (i.e. helps keep hands clean, makes mom and dad

happy)

3) I love the phrase " iron pants " -- I've already used it, thanks for

whoever came up with it!!

4) For the people who are facing their daughter's periods. I would contact

your school nurse. Our school nurse has many visual materials, including

body models, pamphlets, and materials from the companies (Always, Tampax,

etc.). Also, the nurse may have a presentation that they use with classes,

that you could use.

5) Finally (I know, I'm longwinded) - For those of you who have additional

siblings, I know that can be stressful. I have done a group at the

elementary school for siblings of students with special needs. I think it

was really helpful, and I think they liked to see that there were other

people out there that have to deal with some of the same things they have.

It was only a short group (I think 1x/week for 20-30 minutes) but we talked

about siblings getting teased, how to " play " with your siblings, etc.

Thanks for ears/eyes!

Have a good one!

Mindy

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[Guest guest]

Thanks, Mindy, for the random thoughts. Keep them coming! It's great to

hear from someone inside the school system.

[Guest guest]

Hi Carole,

Hope you finally were able to catch a few ZZZZZZ " s.

I can relate completely about the sleep problems.

Do you sometimes feel really relaxed and almost

fall asleep, and then *wham!* you are wide awake

and the brain just goes really fast from one thought

to a hundred others??

Been drinking some good de-caf coffee for a couple

of weeks, it has helped very little with sleeping better.

But, I would notice acid reflux problems if I had more

than 2 cups of coffee. I notice it also if I have more

sugar than I probably should. I do feel a bit more

" relaxed " though.

My doc who retired early due to severe RA told me

that the Fall of the year people seem to have more

problems with their stomachs, and everything else,

he didn't know why, but that is what he had observed

in his years as a doctor.

Never tried the Marijuana, but would if it became legal.

I wasn't a " flower child, " but that is where my heart was

at that time...so I consider myself an " old hippy " anyway.

Stress. You know Carole, I am beginning to think that

the word " stress " is actually a " dirty word. " It seems

I too keep getting lot's of stress piled on me..and I *know*

it sure doesn't make the disease any better!

Here's hoping you start sleeping better! Here' hoping

that all of us who are having sleep problems, start to

sleep better!

Yes, I too have a very supportive husband. I probably

would not be alive today if not for him. My heart goes

out to the ones whose mates do not at least try to be

understanding, or even worse have left them because

they are ill.

Hang in there Carole!!!!

~~~tricia~~

-- Random thoughts

Hi Stilligans,

Well, it's after 1AM and I have to get up for work tomorrow at 6:30am....

did

someone mention recently problems with sleep?? I can probably count on my

hands and toes the number of times I've been able to sleep with no problems

since having stills and it's usually after being up for way too many hours.

I

routinely try to give up caffeine and I think it helps me a lot when I do (I

did have a small cappuccino today). But then the fatigue is so overwhelming.

People have talked recently about stomach problems and irritable bowel and

such. My rheumy gave me the " new purple pill " for that as I was having

really

bad acid reflux. It just gave me diarrhea so I stopped. However shortly

after

that I gave up caffeine again (got up to 1/2 pot of coffee per day - it was

hard getting up for work daily) and the acid reflux has totally gone away.

Just a suggestion. However the lack of caffeine sure is hard on the fatigue.

Does anyone else out there ever have uncontrolable coughs when their still's

kicks in? This is the 3rd or 4th time since my diagnosis that I've gotten

this horrible cough that sounds like I'm choking up a lung. I've been asked

if I smoke, and I've never been a cigarette smoker. But even cough medicine

with codeine isn't affective. This time my rhuemy got a chest xray. We'll

see

what happens. I'm sucking on cough drops non-stop which makes it kind of

hard

to do my job at telemarketing.

Also, does anyone else notice any seasonal patterns? I originally got sick

in

August of 1998. And so far, every time I've had to increase my prednisone,

it's been in August. Don't understand it.

I am so very sorry for those of you who's partners and families have not

been

supportive during your stills. My Al has been wonderful and I just don't

know

what I'd do if I didn't have him. I am very grateful. I pray you all find

supportive people in your lives.

Finally.... I'm having a hard time emotionally lately. Went to see my

counselor today and cried the whole time. I raised my pred a couple of weeks

ago, and I'm sure that has something to do with it. But lately I am so

afraid

that I'll never be well again. Everytime I've had to increase my pred, I end

up with new problems and I get so scared that I'll end up some horrible

vegatable. Now, since getting Still's I have been lucky enough to have a lot

of days where I feel pretty darned good. But, goodness, this sure can take

it's toll on us, can't it? And I'm feeling sorry for myself and needy and

sad

and depressed. I'm not suicidal but I'm thinking death a lot. When I was

trying to fall asleep earlier, I found myself crying again, so I finally

just

got up. I know that the meds have a lot to do with it, I know that having a

chronic disease can be difficult, and I know that I'm doing all I can do to

get better. But sometimes you just can't catch a break.

Dear Cat, I noticed your ending has changed recently from your wonderful,

" that which doesn't kill us makes us stronger " . I can't remember exactly

what

your new line is, but that's sure what I feel like lately. Just kind of fed

up. No wonder I can't sleep. Way too much on the old nogan.

Well, Let me putz on the computer for a while (love that video poker) and

maybe I'll get tired. G-d bless you and thank you all for being there for me

I don't know what I'd do without you all!!!!

Love Carole

[Guest guest]

Dear Carole,

Thanks for the update. I know the last time I tried taking the Prednisone I

had symptoms that I just couldn't deal with.

I was moody and emotional, I felt on edge and full of anxiety. I had severe

insomnia and my skin was breaking out and seemed paper thin. I starting

bleeding too easily. Anyway I just couldn't take it. The point is and you

probably already know that some of these problems are probably from the

Pred.

Keep your chin up in time I am sure things will get better. I intended to

be more uplifting and supportive, sorry. It was so nice to hear from you.

You and Al are in my thoughts and prayers.

Love,

jatw@...

[Guest guest]

I've come to an interesting realization recently that I think others here may

relate to.

My grandfather recently had to have one leg amputated below the knee. I was

really freaked out about him doing this but now - about 3 months later, I

realize that he is so much happier and doesn't even seem to be very bothered by

losing the leg. I should say that he gets a bit foggy now and then but is mostly

lucid and clear at 85 years old.

Anyway, my mom and I talked about how we just never realized exactly HOW MUCH

pain he had been in and for how long. The relief from the pain far outweighed

losing a body part for him.

So anyway... my realization is that for the last year or so, after I had gotten

well along in my recovery from my -ectomy - I really felt a huge emotional

weight off my shoulders (or sternum) because it finally sunk in that I would no

longer have spasms. I didn't have them all the time and frequently could break

them before they got bad but I had spent years with this kind of low level

anxiety - just knowing one could hit me at any time. Being worried when i got

married that a spasm would hit the day of the ceremony (it didn't but one got me

about 3 days into my honeymoon) writing out VERY detailed information in my

birth plans and having extensive conversations with the OB's because I was SO

SCARED that I would have spasms during labor. You all know what I mean.

I'm guessing I'm not the only one who has felt/feels this way - that is why this

group is so great.

funny how after 25+ years with A and about 7 years with this group - I find

there are still things to learn.

Hope you all are well..

- in NC