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Lucy

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About Lucy

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    Senior Bronze Member

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  • Location
    Canada
  1. Tendon Shrinkage

    Hi Georgette, Here is my situation, Both of my hands areswollen tight and curling in. My doctor is a sclero expert and she has me going twice a week to an occupational therapist (I also go to a Physio Therapist but he does the rest of my body). She has written my OT a note to be very aggressive who firstly does parrafin wax treatment on both hands to warm them up, then she bends closed and straightens all my fingers and wrists. I have tears it hurts so much but she does flatten them and close them. My doctor said that this needs to be done so when the Sclero stops being active my fingers will still be able to move - so the benefit is really not for now it is more for when the Sclero burns it's self out. I have been doing this for 2 years and I must say that my fingers only hurt for about an hour after I am finished.
  2. Undergoing Stem Cell Transplant

    Thank you Craig and Sharon for sharing your info. I am just at a point of starting to consider/investigate Stem Cell. It is an option available to me. I understood all the info and numbers you provided Wow is all I can say at this moment. I got the message you really need to pick your facility. Thanks again so glad to see you are a team working together to get through this.
  3. Hi Gidget, I think of you every week and hope you are still holding your own. I am just starting to investigate Stem Cell. Here in Canada it is an option to me. I think the high dose cytoxin was the same concept except I was left unprotected? Not sure going to see how I do until the spring and then see my rheumatologist to discuss. Take care.
  4. Hi Snowbird, you are always such a great supporter. loved hearing from you. not better yet but refuse to give up or give in. thanks.
  5. Hi Janey, Thank you for sharing your personal experience. It helped me confirm that I need to do what I feel is right for me and not just follow. I am going to take a break, get strong again and see my rheumatologist in the spring
  6. Undergoing Stem Cell Transplant

    Hi Sharon and Craig, So happy to hear all is going well. Can you please tell me what are the numbers you are looking for in your blood work. Is it white blood cell count only? Also what are they now and what do they need to get to before you can go home? Just checking against the high dose Cytoxin number I have. thanks
  7. Hi, If anyone has any experience I would greatly appreciate their thoughts. On Sept 3rd I went on 1 pill a day 50mg of cyclophosphamide. On Oct 3rd I went up to 2 pills a day. The doctor did this step up process because I have had troubles taking medication in the past. On Nov 13th I ended up in the hospital for a week and a half. I was totally dehydrated, could barely walk, lift my arms from muscle weakness and I had gotten salmonella food poisoning along the way. My local doctor said my immune system was so weak I was bound to catch the first thing that came along. I had to get blood (my hemoglobin was 84) and IV for a week and antibiotics white blood cell count 2 - to just get out of bed, with help. My SD specialist wants to review me going back on the cyclophosphamide after I get a little stronger, maybe a lower dose. My question is has anyone else had a difficult time with this drug and were they able to go back on it. My SD is 3 years and aggressive skin involvement but not in my organs to date. Thank you,
  8. Lung issues and neck sign

    Hi, To monitor my lungs the only test my rheumatologist orders is a Pulmonary Function Test - as long as it is normal she orders once a year to track their function. The PFT info she wants: Lung Volumes Spirometry and Gas Transfer Hopes this helps.
  9. ISN YouTube Videos about scleroderma!

    Razz. When I watched your video I startd to cry, I always feel so alone now I have feel I have met you and we are the same. I lok like you, I move like you tthnks
  10. I have been confussed about something and hope maybe someone can clarify for me. My diagnosis was said to me as Diffused Scleroderma, but I often see the word systemic in the posting I have read and information. Is this a different kind of SD other than Diffused Scleroderma or just the accurate description of the Scleroderma disease regardless of type? Just not sure what Systemic means. Thanks
  11. Lost I can not help but cry when I read your post my situation sounds the same. My husband/best friend is my caregiver and my life has come down to sitting and lying down. That's pretty much it with small movements in between that tire me out. We use to just do everything. I have the best medical care but there is no stopping what is going on in my body. My appreciation for my husband is that he is strong and healthy and he is taking care of all the things I cannot without ever making one comment. This is the greatest gift he has given me, our house our kids our lives still move forward because of his stepping to the plate when I could not. Any pleasure he gets from work or our kids etc. I am grateful for because I cannot do much for him. Sadly, I do not want to do much to be honest, too much effort, but when I am lying down on the couch and he comes and sits with my feet on his lap and just holds them and talks to me about all that has gone on - this is now my greatest pleasure. Not sure if this helps you but I wanted to share with you from the sick partner's point of view.
  12. Hi Rainbow, I had the same experience I was having problems swallowing (right at the entrance to the throat) plus I had decreased emptying of the stomach. I was to the point I hated food and to eat and always felt yuky (not a word but describes best how I felt each day). My Doctor who is a Sclero expert prescribed to me Domperidone Maleate 10MG. I take one tablet before each meal and one at bedtime. It has changed my life, oh my, I am no longer having any problems it took one day on the medication and ..... it also made my bowels regular in the morning after my breakfast which I was also having trouble with. One of the best medication results I have ever had.
  13. What to expect?

    Hi lotokids, Wow 9 kids, I have a blended family of 8 - when my husband and I got together the youngest was 3 the oldest was 12, it was a ton of work but worth all the effort. My family physician referred me to an internal medicine doctor first. The internal medicine doctor knew personally the rheumatologist she was going to refer me to for Scleroderma (soon as she saw me she new I had SD) so she called and asked what tests she would like done while I waited for the appointment, the first available appointment was in 3 months, here is what the rheumatologist who is an SD expert said she would like ordered and to bring the results/reports with me to my appointment which I did and worked very well. Upper GI Chest Xray Pulmenary Function Eco Cardiogram Blood Work which included CBC (standard functions) and Immunology series which sounds like you already had. Hope this helps you
  14. Remission?

    Hi Peggy, I have diffused SD no vital organ involvement todate. My Sd has been very aggressive, skin score is 40 and I am just approaching the 3 year mark with no slowing down and my mobility in all areas is becoming very limited. My rheumatologist who is considered an expert in SD has said it is time to stop it. I see her in Sept to go on cytoxin for 1 year.
  15. Sadie, thank you for all you shared with me to help me get through this. My heart is so sad, please know you will be in my thoughts forever. Love Lucy
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