You all make my day!

[Guest guest]

Good afternoon - my friends!

I only get to read my email here at work and only when it's not busy. However,

those days are a-changing. The computer tech here at work had me bring in my

computer a few weeks ago and as he had time, he worked on it. He gave it back

to me today and pronounced it well. Now, I will have to get one of my

daughters, to come to the house to connect it for me. I have had a new

printer/scanner sitting waiting for it for months. The " flair " I experienced

last week has almost died down to where I feel like one of the living again.

When you all talk of the fatigue that accompanies this disease, I relate so

well. Fortunately, I have a couple of good friends who understand when I say I

am so tired that I cannot do anything and the hurting is always there also. I

don't think my daughters understand though. Kathe - you spoke of your

grandmother having " joint " problems. My grandmother had arthritis(at least they

got that part right)in her hips and her hands. We're talking back quite a ways

- she died in the early 60's. There was not much they could do for her other

than asprin in those days. And as she lived in Wyoming about 60 miles from

Thermopolis where the hot, mineral springs were located, she spent many a day in

them, trying for relief. My mother, who died nearly 4 years ago, used to have

pain in her hands and hips also. The last few years of her life, I took care of

her and I did not empathize with her as much as I should have. I always felt

that it could not have been as bad as she said and that she was " just giving in "

to it. My mother was a very independent woman(much before her time)and she

raised me to be also. I am independent but with a difference. I need friends

and she did not. I should have been kinder to her(not that I was cruel or

heartless but tried to be firm with her about not giving in)and now..........I

know what real pain is and understand what she was going through. I wish I

could tell her. I also think this was coming on with me for several years - I

just refused to " give in " to it and admit there could be something as bad as

being in pain all the time happening to me. The postings on the sleepless

nights are very familar to me. A doctor put me on Elavil several years ago

because the pain in the front portion of my right thigh would keep me awake at

night. It helped reduce the pain from a 9 to a 5 and I slept better - not

perfect - but better. Nearly 2 years ago, I had a blood clot in my lung and

they took me off of all medicines. The pain in my thigh returned but not too

too bad but the sleepless nights did. The doctor I was seeing at the time sent

me for a sleep study(last 8/25) and it was determined that I had Sleep Apnea. I

was put on a C-pap with moderate results. I used it until about 2 months ago

when this terrible rash broke out in and around my nostrils and spread down my

face. I stopped using the C-pap. The doctor at that time suggested putting me

back on the Elavil. I'm sleeping much better again. This has become an epistle

so think I had better close. One more note: whenever I think I'm at my wits end

with the pain, someone comes around that is worse off than I am. One of the

young ladies here at work just stopped to tell me her father has pancreatic

cancer and that it doesn't look good for him. He lives in NJ and she relocated

here to CA 9 months ago. I look at all your notes and wish you all happy days,

health, no pain, soft tender hugs and wish I could be with you in person to give

the hugs. Heidi - I really apreciate your caring words to everyone. All of

you seem to know just what to say when I am looking for an answer.

Jan in CA

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