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About Sd53

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    Pacific Northwest
  1. Thanks for your understanding and knowledge all who have commented already. Shelley, thanks so much for taking time to address so many issues I do face. Actually this is my 4th year (probably 5th before actual diagnosis), an all my meds have kicked in I think :huh: It's probably most difficult with my grown children, they're young and, they don't understand. I don't want to scare them, so I try not to talk about it too much, however I have blown up too many times about things they are doing I can no longer control etc.. Also, after I wrote in a while ago, I went to the ISN Newroom and looked at information that was helpful (on diet & exercise, vitamins etc.). I think what I did, was over did it at the gym today and came home and got overwhelmed with leg pain stuff. I am so disappointed I cannot do what I used to in so many areas of my life. That, I'm still trying to deal with. Anyway, I know clearly I need an attitude adjustment and a way to blow off steam before I ruin all my relationships. I wish :rolleyes: I could be one of those layed-back people that never let anything bother or upset them...they are wonderful people who know how to let all the small stuff roll off their backs. Anyway, good wisdom from you all, just to know I'm not kookie and I'll continue on...just to find the things I enjoy the most in life. Thanks again ;)
  2. Friends, :unsure: I'm wondering if any of you have the emotional struggles that I seem to be having with dealing with my family and friends and/or working relationships? Sometimes, I feel like a basket case...it's hard to say just what happens, but today especially, I'm on an emotional roller-coaster. one minute I feel fine, the other I'm crying because I said something the wrong way to another person I care about. Sometimes, I don't even think I say anything wrong, they just don't understand me? Well, without saying too much in detail, I'm not sure what we are able to say about anti-depressants, but I'll say I'm on them. My rheumatologist said I'd need them along with proper diet and exercise with this illness. Of course not everyone needs them, I'm sure, but I seemed to. So I'm trying to do all this, diet exercise etc., but my mouth always gets me into trouble. It's either that or I take everything in a personal way, and I misunderstand everyone else. What can I do? Drag them to my next Dr. app't., so they can hear for themselves what I go through? I'm sorry, but we all need to vent once in a while right? :angry: Anyway, I'd love to hear your feed back, maybe it's one of my med's I'm taking that makes me feel like I need to spend a few days in a loony-bin, ie. mental ward. I hope someone else out there knows what I'm saying. Also, please note, I'm not trying to get pity, just understanding and some ideas what to do when I feel this way...whatever way that is! :huh: Thanks SD
  3. Welcome!!! I was also glad to find this website :D I don't have any answers for you yet, but we are here to support one another, no matter what our physical problems are. So sorry, for all the problems you are having, but at least you have a diagnosis and now the doctors can help you. I have Sclero as we all call it, and I was scared to death when they first told me, but the doctors can help with meds. Thats where this website is helpful too, there are lots of benefits like encouragement, the ISN Newsroom with very informative articles about everything and lots of input from others, you'll hear from others that have your same diagnosis. Meanwhile, I hope you feel better soon. SD53 :)
  4. Hi, Sorry to hear your doctor didn't give you some instructions... :huh: I was also put on Methotrexate when 1st diagnosed and it made me icky :( at first. My Dr. said take 1/2 dose at night with meal & water, then the next morning the other 1/2. Just so it's within about 12 hour period of time. About the same idea as everyone else has said. Good luck
  5. Thanks for all of your input, I will check out if there is an Arthritis Foundation pool available here where I live, that sounds sooooo nice, warm water! Also, lizzie, thanks for the idea of dancing at home. I do belong to the gym, and tried walking a mile at a slow pace, 1st time, didn't make it a mile. 2nd time, I did it, but came home very sore in my upper legs. Don't quite understand, if there is muscle on my legs, why it should be sore after walking slow. Anyway, I just need to build up as some of the rest of you have suggested. Walk slow, float in warm water and dance. I like that! :D
  6. I've heard U of Michigan is one of the best. I don't know for a fact, but my rheumatologist moved over there to be on staff and he was one of the best here in Seattle. :( I miss him, he was very good. His name is Dr. Molitor, just in case anyway wants to know...hope it's o.k. to tell you his name. He should be on staff there by now.
  7. I'm wondering what to do for exercise. Thought I'd throw this out and see what kind of responses and ideas I could get. I realize that the type of exercise a person with sclero could do, would depend a lot on the degree or severity of the sclero. But I'm just curious what anyone does to keep the joints moving (even though they hurt). Also, I'm currently not working, but I may have to go back to work. When I work, I'm usually too tired to exercise, so how does anyone handle that? I'm unfortunately overweight by about a kazillion pounds and my self-esteem is pretty low, but I want to do something about it while I still can :blink: So, does anyone have any suggestions or comments...I'd appreciate it. Thanks :unsure:
  8. Thanks to all for your responses. It's not really funny :blink: But it is, cause what janey said, I've noticed and wondered why, when I roll onto my right side I start to burp, or try to, or like you said if I go to back to sleep in that position, I always have the acid come up. Now I know why, Very enlightening! I do usually sleep on my left side on a wedge pillow too. Thanks :)
  9. Hi, I don't know how hard it is for you in another country to get the doctors. I would hope you could get the point across through your family or some of the doctors you've seen, that you would like more help and less "run around" if you know what I mean. I haven't been on this forum too long, so I don't know your symptoms and diagnosis. If its like some of us with scleroderma, our skin and joints and sometimes other organs are involved. Is that what you have? The rheumatologists help with the joint involvement and prescribe what is needed for the pain and swelling, but maybe there aren't that many where you are located. If your dermatologist is the best doctor you can see, maybe its to treat your skin as it is now and then move on to other needs you have, I really don't know. Don't give up, try to keep talking to them and someone will get you what you need.
  10. Sd53


    Hi, I don't want to downplay anything that should be looked at by the doctor, but sometimes depending on age, we can get spots and blemishes besides sclero problems. Of course I have my share of the CREST, I forgot what they are called, but the red spots that first came out on my upper left arm, then my upper chest and have come out ever since. They go away if you push in on them and then reappear (I think they are spider veins from the tightening skin??) Anyway, I also, since my skin has tightened, have other spots that have come out of no where. They look like age spots, but aren't really dark brown, sort of a tan color, then there are the age spots or darker looking freckles(used to be called sun spots?) I hope that's all you might have. Not too serious, but of course it always feels better and is better to know from the doctor, what could be happening as our skin changes. Mine is feeling like stretched sandpaper these days. It's better to know for sure! You're not alone :huh: :blink:
  11. I totally agree with Sweet, I've been on it as well as the Methotrexate (only because my body seems to tolerate it), and it helps me. My doctor also gave me 1 mg Folic acid tabs to take once a day for hairloss. It works for me, although I do still loose some hair anyway, nothing out of the ordinary though. Maybe ask your doctor about the Folic Acid tabs. Take care.
  12. Jensue, I too have had carpel tunnel in both wrists, had the surgery on one & the other cleared up mysteriously. Go for the wrist braces right away is what I'd say!!! It helped me alot until I could have the surgery. I had to quit playing the piano & the computer, I slept with them on even...but I wasn't diagnosed with sclero yet either, so I don't know how it affects you painfully. Anyway, take care of yourself & protect your wrists & hands at all costs.
  13. Hi all, Thanks for all the reply's & suggestions. Sure sounds like we're in the same old boat...Ha! I went to the article jefa suggested and I'm amazed I mean AMAZED where the article was written from plus were you are all from. WOW I think I like this web forum alot. To know there are soooooo many of us, is comforting. Now, if we could just find out how to fix it!!! Anyway, I have had the "stick the tube down your throat & gag" test, and the GI tests, so I guess it's me and soda pop, caffeine & some of my med's that could be making it worse sometimes. Anyway, I'll give my dad's fizzy remedy a try and keep the tums by the bed. Last night I woke up in the middle of the night after I'd already taken my usual nitetime reflux stuff & took a nexium just in case & slept the rest of the night no problems. Anyway, thanks again, SD53 P.S. how do you come up with the pictures and a signature for your pages?
  14. Hi, I'm a newby, I was diagnosed with Sclero in 2003. After reading the various forums several different days, I realize I don't have near the difficulties as some of you have. However, my biggest difficulty right now, besides the swollen hands, tight skin and sore joints is my esaphagus problems. Because of this problem being an issue even before I was diagnosed, It seems worse now. That's why I'm writing ya'll to see if and what you do about it. What happens to me is, I can't eat certain things especailly at night or within 4 hours of bedtime. Sometimes I still have the same stuff come up my throat no matter when I eat or don't eat, and my biggest fear is that it will go into my lungs. So I try not to cough or clear my throat because when I do, the acid comes with it. I take Nexium during the day & Zantac at night and it helps a lot, but there are always nights during every week I wake up with it. I also sleep on a wedge pillow to help keep it from happening. Anyway, what I've been doing is as soon as I'm choking & want to clear my throat I start drinking water & more water & more. It won't make it go away, but I figure if I do this, I will get rid of some of the acid & burp, which relieves some of it. Then I just sit there and wait of course trying not to cough etc., It does pass in about 45 minutes usually, but why won't it stop? Does anyone out there have any good remedies?
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