: Super sensitivities

[Guest guest]

I share this once in a while, and will do so again.

My husband and I have a wonderful relationship, so this arrangement is in no way hindering that.

We sleep in different rooms. We own different rooms. Since he built a 'suite' for me, a double room with a section with chairs and table, TV. Etc so that I might enjoy any company when I am sick and stuck in bed. I love my room and my very large bed. We purchased a new bed for my room- one with a head and footboard (sleigh bed). This has helped a LOT. I still raised the head of the bed for my dismotility.... The headboard helps keep my pillows in place...the footboard does the same for me in the opposite direction....I lie sideways on the bed with all my pillows situated just right and then change that throughout the night. I cannot stand it and will get up and strip because my clothes are hurting me. Even the blankets can do that. I have even turned the heat up in the winter so I can just get naked on the bed with no bedsheets, etc. I have to turn the a/c to a cold room so that I can bundle up like winter. My doctor even understood that one...the best way to be 'acclamated" at night in the summer is to get he room cold like it is winter and then BUNDLE UP. It does help with my breathing.. And it does help with my body - I can't explain it, but it does work.

I was on Ambien for years...at first, I was taking double doses and I cannaot recall the reason for doing it, but it worked so well for me!! I put on my eye mask, closed the door and went to sleep.

However, about five years later, and after having my ambien doses cut in half, I would sleep (and still do) very little. Some nights I will get three hours. And then I will be awake for hours and then fall asleep again and get a few more.

BUT it kept worsening....I had different routines and meds and otc...everything. But now I don't sleep for two and even three days at a time - when it gets THAT bad, I find myself even falling asleep in a standing position and more than once kept myself from seriously injuring myself when falling asleep on the toilet. This sleep has caused me a lot of problems....cognitive....I am sure my pain increase is due to the insomnia....but the one that causes me to cry is the weight gain.

I was 128 pounds when this started. I was poisoned by OTC L-tryptophan and received lots of prednisone to make me well again (while over 50 people died);

I gained a whopping 80 pounds during that year on prednisone. I lost about half of it once I went off the prednisone. Still, I was not FORTY pounds over weight!

Now, each year, I gain between five and seven pounds. I am so depressed over this, but no doctors is really helping. I will mention my weight, and they do this or that...but now, jusst like when I could not get help with my pain and I finally made a demand with the doctor, I have come to that same point. I cannaot live t his way. Something must be done.

I am told to make sure I get sleep because there are chemicals I am missing...and thse can even eventually KILL us.... BUT I want to LOSE WEIGHT!

I don't KNOW that woman in the mirror. She is NOT me! I am the only one in my family who is fat!

I do cry.

My pain is bad...very.....I have about eight diagnosed illnesses....I am on all these medications (including thyroid nodules meds)....and I don't know which one of these meds are causing weight gain as well. I am a mess!

My husband and I are planning a short vacation next month and we have to get separate rooms! I cnnot sleep when someone is in the room. In addition to that, I need the entire bed in order to get myself situated just right with about ten pillows. And then the pillows or blankets will make me crazy and I have to take them off....and I do NOT want my thin husband to see his FAT wife in her underwear when she has to sleep like that.

I can't find the right clothing to cover my upper arms....my face is beginning to look fat...my neck.....argh!

I have never been this weight...not even when I was pregnant with a very large baby.

Anyone have any help? I realize some of you are your right weight and that is wonderful; but some of us are a mess with our weight. I NEVER had a problem with weight. I had my first son and because I was so niave, I brought my 'regular' clothes to the hosp with me. I figured I could just slip right back into them. And I DID! I did not know that was not the usual until someone remarked about it. And then my second pregnancy, I figured I just had that kind of body....slip right into my old clothes....and BIG surprise......could not zip up the pants I brought with me. (lying on the bathroom floor trying to zip up the pants...giving up and wearing my MOOMOO shirt home hiding the opened zipper tummy area) what a sight! Lol This baby was three times the size and so was my belly. BUT I just nursed her and then when that was done, dieted to my right size. NO PROBLEMS!

I am so depressed I could scream!

Anyone have any advice??????? I am desperate!!!! I am ugly. My scleroderma is bad enough and my L.S. Is, too...but now this.....I am so depressed to look like this.

And the thyroid has my hair all brittle and falling out. I am so cute! I look like a cartoon!

All suggestions and advice will be greatly appreciated! You can even send it to me at my home email....or to the group....whatever you prefer.

Either way, I am hopeful for some help!\

A post script

My husband is such a friend for me! He is my lover (although that part of our life together is very changed)....and he is my hero. He has made changes to our home in order to accomodate my physical limitations. The changes (since he was the one who built this home himself anyhow) don't look awkward. They look like the house was built this way. He changed my vanity and bath area....he is changing the middle bathroom right now and adding another walk-in closet that will have enough room to keep wheelchairs, etec. Now this walk-in closet was just empty space after he re-designed my bedroom. And his room is right across from mine; he keeps his cell phone on at all time - and I have needed him in the middle of the night. I had to crawl to his room once using my arms because my legs would not work....so now we do it that way. WE spend time together in my room and he will kiss me goodnight. When we would be able to spend time in the familyroom and watch a movie, etc. He would call it "walking " me "home" and he would do the kiss at the door thing. How precious this man is.

I don't fear losing him because he is not getting enough 'sex'....we are covenant together...we have made a vow - an oath before God and we are keeping it. He gts the shorter end of the stick, but he has come to see that there is so much more to a relationshiop. And by that I mean, we have re-discovered ourselves...we have found new ways to enjoy one another....because we truly love and respect one another. My husband never raises his voice to me or ever calls me a name. He opens my car door for me and even cooks my dinner after he works all day and I spend the day in bed.

Off the subect again.....

But anyhow.....I am depressed aout the weight gain...and hubby doesn say anthing....but he USE to say things aout my slim, sexy body..

NOW he will say "I never married you ONLY for your body. " Well tht is comforting....and once I KNOW he meant it in a nice way, but it just went right through me....

There was A Christmas party at his place of employment. I had not gone to one single party since I had started putting on the weight. I think they would be shocked! He walked up to me, putting his arms around me and saying I look nice - and that I should not feel uncomfortable. Thre is the wife of a man (Mr. X) whose wife attends these parties and she is very large, and she feels very sure of herself. And that I would not feel so alone. ARGH! I now he meant well, and I did not pull him by the ear lobe.....but that hurt. My husband is good to me...I cannot explain to you how wonderful he is to me. But I am FAT and I am NOT the girl he married....I am not even the SIZE he married....

Sigh

Roseanne/phoenix