R'egene

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About R'egene

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    Bronze Member

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  • Location
    Alabama
  1. Hey all, While were on the subject I was told that milk makes the sclero worse. From what you all say that doesn’t sound right. I don’t understand why my rheumatologist says I shouldn’t drink it or anything high in vitamin D. Is it me or maybe he doesn’t know what he’s talking about. He doesn’t seem to know much about sclero anyway. What do you think?
  2. Emmie, That's crazy. I can't belive they said we did something to get the diease. I know that's not true cause I've had this disease since I was ten.
  3. Pauline, I've had dss for 8 years now. I't's not so bad when you eat small bites and chew your food very well. Take your time eating and even though water helps a little. Seems like after drinking all that water my food still tries to surface. It hasn't gotten worse and I try not to think to negative. Taking my prilosec everyday helps with the food getting stuck a little. It'll be ok you'll learn how to work around it. There are those bad days when im rushing trying to eat breakfast and get out the house, i end up coughing terribly and eventually throwing up my food. There are good days when I can eat a meal not to large and take my time. I'm sure things will get better. R'egene Happy Holidays :D
  4. Janey, It sounds like you a wonderful doctor that really cares and is concerned on how to get things straight for you. I'm glad to hear to hear that you've had some new found good news come up. I've never heard of these medicines you've mentioned. I printed out some pages on them and I plan on showing them to my doctor. I'm glad to hear that things are going well for you. I hope soon my time will also come. R'egene Happy Holidays!!! :D
  5. Hey nan, My feet bother me in the winter. They ache, and just as you said the only time they really hurt is when I have shoes on or I have been on my feet all day. Usually a little elevation helps. I hope it's not to bad. I hope I helped a little. R'egene
  6. Hi Sheryl, It's nice to hear im not the only one with extreme fatigue and having to go to sleep in the daytime. When I do take these naps I am also in a deep sleep like you are. The only way I could stay awake is to walk around but that makes me more fatigued. I don't sleep at night though like you. I stay up all night until about 5am. I get up about 7 or 8 am and do the things I need to do, but even when I do get a good night sleep I am still extremely sleepy and fatigue during the day. Your not the only one. Tell your rheumatologist we're here to support you. Regene Birmingham, AL
  7. Jennifer, calcinosis can be painful and also disfigure your fingertips. Band-aids, and gloves help me and keeping them from getting so dry and stiff. They hurt but I don't know if there is any way to stop them from appearing. R'egene Birmingham, AL
  8. Joe, It is wonderful that you are concerned and supportive to your wife. The support will help her a lot. I'm sorry she is ill. I hope things get brighter for the both of you. I have localized scleroderma and pulmonary fibrosis, raynaud's, and JRA. I understand her frustration. Things will get better. R'egene Birmingham, AL
  9. Patty, Prednisone seems to have a lot of effects on me also. I hope u get better, and dont give up hope. Better things are in the future. I have been on 10mg for 12 years so I know it's frustrating. Keep in touch and stay strong. Rest and don't stess out so much. R'egene :) Birmingham, AL
  10. Sweet, It is very hard battling this disease and I know it's even harder for you since you were diagnosed 2 years ago. It seems to take over your personal and career life. I had to stop playing sports in 7th grade and I couldn't do the things my friends wanted to like go to Six Flags and get up early to go to the gym to workout. I told them I couldn't breathe on the rides and the fatigue makes it unbearable to get up in the morning. The gym was causing me to have breathing attacks and migranes. Some of them didn't understand, but I got over it and realized I have to be happy for myself. There are true friends who won't be bothered by those simple things and there are others who dont understand and dont really care to. These 12 years have been hard, but I know I can do it. I know you can too. You are very pretty. Thank goodness the scleroderma doesn't show in my face either. At least not yet. They say it gets worse before it gets better. Don't give up hope. R'egene :)
  11. Janey, I read your post. Thank you so much!! I too have lost some friends and family members. My friends are my age and they don't understand what it is I am going through. I try to explain it and I never complain when we go somewhere. They just don't understand. I don't blame them, but I won't stress out over them giving me the support and understanding I need. I try to stay positive because if I didn't I would spiral into a depressive state making me believe I won't live past 30 like my doctors said and my life will only get worse. I have to be there for my son, and until that day comes I will stand strong for him no matter how bad it hurts to tie his shoes or turn on the faucet to run his bath water. He makes me so happy and im glad I have my mother and people who understand............like you. I hope we become good friends and maybe one day even meet. I'm just so excited to finally meet someone like me. I'm not alone after all. R'egene :)
  12. Heidi, Thanks for the helpful information!! I didn't know they had a breathing treatment for pulmonary fibrosis. Right now I am just using albuterol, and it doesn't help much. I don't know if I have linear or morphea. How do I find out? I have a big tight patch on my left leg that is white and brown colors. Would that help me? Thanks for being so helpful. I couldn't ask for mor friendly people. :P R'egene
  13. Scleroderma is very overwhealming, but you can't give up. I have filed for disability because I also was feeling bad, having extreme breathing problems. I could barely walk to my desk to the restroom without feeling like I would pass out. My circulation is so bad I can't sit for more than 2 hours or walk for more than 1 hour. It's painful, but if u get disability they will find a job perfect for your conditon and never make u do more than u can. You have to stay positive cause there is no cure and the anxiety will make u feel hopeless. I am on a organic diet My energy is wonderful and my scars are lightnening up. The organic way seems to help me because the steroids, cumadin, paxil, prednisone, and nexium every single day seems impossible, plus it weakens my body. I'm trying the natural way, and it is working for me so far.
  14. Hi My name is R'egene, I am now 21 years old with localized scleroderma and life is challeging. I was diagnosed with the illness in 98'. It changed my life drastically. I have a 2 year old son who I barely had because of my weakened muscles. I cannot work because of extreme fatigue and pain in my feet, hands, and legs. The bad circulation from sitting at a desk all day is unbareable. I have been on steroids for 8 years and also cumadin. My left lung is collapsing and I have also been diagnosed with pulmonary fibrosis and JRA because of the scleroderma. I would love to know how others members deal with this disease. :) :(
  15. I have just started to get migraines or headaches everyday now. I don't know why. I get them everyday. I'm not working and try to keep my stress level down. I had a cat scan but it was negative. Have u asked your doctor about your headaches yet?