Posted 27 June 2008 - 12:27 PM
I feel your pain I use to weigh 117 pounds when this disease started, having Vitiligo, Scleroderma and Lupus, it is very hard to juggle my life. Winter was much better when I could get clothes to fit my tiny new body, but now I am at 150 pounds and it is Summer it can be difficult. My husband had entered my name on those make over shows. I never heard back from them, but I hope that someone will really consider on doing a show especially for people that have skin discoloration. Don't give up and stay strong.
Posted 27 June 2008 - 01:24 PM
Posted 27 June 2008 - 05:44 PM
I forgot to mention before I developed SD, I was 5'3" and 150 pds. (Nice and plump). All together I lost 60 pds and even an inch in height. I would like to gain at least 30 pds! I'm sure there's some real nice clothes you can wear. I love all the summer pastels, bright white tops and above the knee shorts. You got a lot of helpful tips from everyone on variations of swim wear. I wear a t-shirt over my bathing suit or with shorts. It doesn't matter what other people think, but I bet your husband thinks you look great no matter what you wear!
I was even thinking a spa party would be a good idea! Do the whole pedicure, manicure and a massage from a masseuse! Sounds good huh?
Posted 03 July 2008 - 02:42 PM
Sorry for not getting back to you, I was distracted with the kids. I do feel your pain when I lost the weight at first I was very skinny 117 pounds, everyone was scared, the upside was that I can get clothes to fit me since I was a size 4. Now I am so depress because hardly anything can fit me, and eating out of control. I do not go to the beaches but will love to go to parks for cook outs, and yet I have to be so careful with the heat and covering my skin so people will not see my skin discolorations. The only way I started putting on weight is from the prednisone, without that I don't think I would of gain any weight. Talk to your doctor about your concerns on your weight and how it is affecting you. If you need anyone to talk too I am hear for you, with a bit of support you can get through this illness. I will keep you in my thoughts and please keep fighting to beat this illness.
Posted 04 July 2008 - 07:13 AM
I remember what it was like raising my little kids. I had to keep an eye on them all the time. So don't worry about responding right away, I totally understand. Thanks for lending your support. I always feel better after talking to someone!
Posted 04 July 2008 - 06:39 PM
I am so sorry you are having this bout of depression. I remember back in a huge flare up in February, I just felt so depressed. I didn't even want to get out of bed. I just wanted to stare at the wall. No energy, on prednisone and it wasn't working very well and just had no interest in anyhthing. I had never felt so at the bottom as I did then . Yes, I think it is the disease that changes us and does mess with our minds.
So to come out of it takes time and patience in letting ourselves understand we are not going to feel well for awhile and take on small projects not big ones. That has been hard as I am a project lover and always tackled things head on. I guess watching my mother fight this disease for so long and never giving up and when she feels better, she gets right back in there and fights for what she wants to do in life. my parents have taught me alot. They both have autoimmune problems and yet they have had great fulfilling lives. Anyway I didn't mean to ramble.
I hope you find a way to get some meaning back as you feel better. Be good to yourself. Susie54
Posted 04 July 2008 - 07:36 PM
I've been on a "sabbatical" for several months now for the exact reasons you brought up in your original post. I thought I had been dealing with being diagnosed with several different auto immunie diseases rather well. I have always been the strong, capable person who managed to deal with and cope with everything well.
Guess what? After building up for a while, it all came crashing down around me in January. I have been taking effexor XR for about a year and a half because my neurologist recognized my depression back then. I now have psychiatrist who handles that end of things. In February, I started working with a therapist. Fortunately, we hit it off from our first meeting. It is the best thing I have done for myself.
I can only speak for myself, but I have not regretted making these choices. I wish you the best on this road or any other you might choose to help you come to terms with the hand you've been dealt.
Posted 08 July 2008 - 07:00 AM
Add to that I don't have an official diagnosis (I don't think, although the radiologist today came in & said, "Scleroderma huh?" when preping me for barium swallow).
Anyways, I'm glad you came in to say hi & let everyone know what's up, everyone here is so kind & caring, it has been a great support to me. I have felt so alone with this at times but I come here & suddenly I'm surrounded by people who care & understand. Hang in there & stick around when you can! (((((HUGS)))))