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Everything posted by kellyA

  1. I get pedicures often and lately had to ask them to stop using the razor to scrape off the dead skin, days after it would hurt so bad. Last few pedicures I went without the skin scraping and it was wonderful. When I brought this up to my Dr. she said Sclero rarely goes to the feet and sent me for x-rays of my heels for spurs, which were negative. Thought I was crazy or getting old. KellyA
  2. Hello, Got my blood tests back last week, my primary doctor sent me a letter asking me to call her and schedule an appointment to see her, she noted on the letter that my white blood cells are high, my thyroid is overactive and my cholesterol is high, and sugar is high as well. So here's my question can't my white cells be high because I have sclero? I have so many doctors that my head spins, I have a cardiologist, pulmonary, endo, rheumatologist and primary, and the best part is they never talk to one another! This is crazy... Anyone have any stories to share? KellyA
  3. Hello, I live in Central Jersey also (mercer county to be exact) I go to Philadelphia Thomas Jefferson University (I have systemic Scleroderma) my friend also has sclero and goes to Univ of Penn. either one of these are fine, send me a private message and I can give you names.
  4. The same thing happened to me last year with work, last April to be exact I reduced my hours to 9 to 3, with a doctor's note stating that I could only work 6 hours a day 5 days a week. I first had to use all my sick, personal and vacation time, which got me through October. Starting November 1st I will be docked an hour everyday but it is so well worth it, my office is allowing this for 1 year, after that I need to make a decision either go back full time or retire (I have 25 years in but I'm only 43 years old) I will get full medical benefits for family but I will take a hit on my pension because of the age. I have 2 kids ages 5 and 9, same situation homework, baths, soccer dance, etc. My husband owns his own business and he works 6 days a week over an hour away, so he is never home before 7:30 during the week and on weekends he works on Saturday. Anyway my point being that your health is the most important thing, so if you need to cut hours do it. I'm not sure what I'm going to do come April 1st when I have to decide to retire or go back full time but in time the decision will come. KellyA
  5. I had mine checked a few months back and it was 16, so my doctor sent me out pills for a month, after that I took a D supplement and 2 months later more blood work revealed that is at 16 again, I received a copy of my bood work the other day (the doctor did not call me and say I needed pills again so I started taking supplements on my own.) I also have been sitting in the sun every chance I get without sunscreen so my bod absorbs the Vitamin D. Kelly in NJ
  6. Over the weekend I ate had a little to much sodium, my fingers are really swollen, especially one finger in particular, one of the moms at my daughters soccer game pointed it out to me and said it looks really swollen and asked if I was okay. I'm drinking tons of water to flush out sodium. Should I call my doctor because one of my fingers is bigger than the rest? Is this normal with sclero? My hands do not hurt at all hard to bend the one that is swollen, I feel like a pain calling her, just want to make sure it's nothing serious that I'm missing. Kelly A
  7. A quick story about sclero awareness. Recently my dad was at the cemetery putting flowers or something on my moms grave, there was a man not too far from my dad visiting his wife, the man came over and started talking to my dad, he then asked my dad what happened to my mom and he proceeded to tell him, then my father asked him what happened to his wife and he replied, "She died of a disease that no one ever heard of," and my father pressed him and he said scleroderma, my dad replied, "I am very familiar with this disease my daughter has it." KellyA
  8. Can totally relate I myself am going through early menopause with hot flashes, but I'm so cold at times... KellyA
  9. kellyA


    I just bought a large bottle, however, I started eating Fiber One bar every day with a cup of coffee, now I do not need to take the miralax...
  10. Hello all, As you all know I have sclero, well my best friend tested positive for sclero antibodies her numbers were 254 and her doctor said it does not mean you have it, is this true, but she is sending her to a see a rheumatologist. kellyA NJ
  11. Hello, Just wanted to see how things were going with the stem cell and how you were feeling, KellyA
  12. kellyA


    I never had extractions but I did have the rooting and scaling done which is very painful and some bleeding, maybe you need to see a dentist that understands the whole sclero thing. I have a very small opening and he works well with me and it turned out fine. I too was concerned with infection, just make sure you call if you have any problems., Good luck keep us posted! KellyA
  13. Thanks to all for your postings, I'm starting to feel better, the vitamin D pills are kicking in. I do think maybe I was depressed who wouldn't be after losing my aunt to sclero - it made me re-evaluate my own life. The past few days I've had more energy--the cold weather here in New Jersey does not help. I really want to go to an island and sit in the sun all day. KellyA
  14. My doctor called me back after I posted this, she said that my vitamin D is most likely making me feel this way, I didn't mention that I lost my aunt to scleroderma last week and I also may have a little depression in me, my doctor told me to call her if things don't get better. She also ordered a echo of the heart just to be on the safe side. Thanks to everyone who replied to my postings. KellyA
  15. I need some help here, my recent blood work came back very low on Vitamin D, so my doctor sent out a prescription for one pill once a week. Lately I cannot pickup my 4 year old she is 34 pounds, something like weak muscles, I feel so bad but I'm so afraid of dropping her if she wants me to pick her up I tell her I need to sit on a chair. I know my hands are getting worse, Raynaud's at least 5 times a day and the skin is very thick. I asked my doctor is there is something she can run to see if this is progressing and she said no. I just joined a gym, I know I need to exercise but with working full time not to sure where I will find the time, I'm thinking of cutting back at work, I'm extremely stressed with 2 small kids and working full time, my husband owns a small business that requires him to work 6 days a week with over an hour commute -UGH!! Sorry, just need some answers, could lack of vitamin D be doing this to me, or something else, all else looks good, red, white cells are all fine..my SED rate did go from 5 to 10 in one month does that mean anything, every joint aches even my fingers....Could it be living on the east coast with this severe cold weather.. KellyA
  16. Sam, Sorry to hear but keep fighting and you need to ask your state reps to help. I thought once you have scleroderma you automatically qualify for social security disability (SSD), I guess I have wrong information. I thought it was listed as one of the ones that qualifies you right away. Can someone please shed some light on this for me? KellyA
  17. I went monthly for a year, it was fine, the first day I felt fine, the second day ok, and by my third day I would stay in bed all day and the next fine, I tried to schedule them on thursdays so I wouldnt miss to much work, my hair thinned a little, (I had very thick hair) so it was hard to tell. Take the zofran as prescribed. Good luck.
  18. Hello Mine was caught early ILD, in fact an X-ray showed nothing and another doctor ordered a CT scan because she though she heard something in my lungs it was caught so early that there is no damage to the lungs, I did chemo for 1 year and it is stabilized for now. Don't make yourself crazy, however my doctor recommends a 6 month CT scan to check any changes and catch them early. KellyA Diagnosed about 2 years ago with sclero and lupus..
  19. I have attacks of Raynaud's several times a day, now when I say attacks my hands turn purple, but I have no pain and it goes away fast, once I get my hands warm it will go away, Can anyone tell me how many times a day they have attacks, what is normal? KellyA
  20. I get a pain on my upper right hand side right in the back by my lung it comes and goes for years, even before my diagnoses, I take NSAIDs and use a heating pad, could this be the same? KellyA
  21. I woke up this morning and my feet hurt soo bad, luckly my office was closed d=today due to the holiday, otherwise I would have called in sick. My feet hurt so bad this is the first time this ever happened, It took me over an hour to go to the grocery srore for a few items, Im actually limping, Last week I went for a pedicure and they used the razor and removed all the dead skin, my feet felt great, except that I started to feel them hurt and by today I can hardly walk, not sure if the two are realted, I \guess no more removing the dead skin, it was a cushion and now I have none.... Any advice on when this will go away,.. kellyA
  22. If I'm carrying a bag or something I always get indentations in my hands/fingers that last for a while it's like if you squeeze them they don't go back for a while, it's very strange, almost like water retention. KellyA
  23. Im up 20lbs since I was disgnoised, I also quit smoking so I contribute it to that too, my dr's keeps telling me to lose weight, Im also going through menopause and I have an underactive thryoid.....UG!!! I lack confidence in my appearance too... KellyA
  24. I was reading the eairler post about cellcept. Can someone please tell me, Im so confused. Last time I went to see the pulmonary dr, she told me she would like to start me on cellcept as a maintenance to cytoxian (which I finised 9 treatments). I told her I would do some research and get back to her, Is cellcept for your lungs or the skin? I heard really bad things about it and Im leaning towards telling her no thanks.. Please advise? KellyA
  25. Michelle, Before you receive the actual cytoxian you will have an IV with fluids, I usually got to the infusion center around 9 and was out by 2 or 3. KellyA
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