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Judy Devlin

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Everything posted by Judy Devlin

  1. Lidia: Scleroderma Discovering that I was ill with scleroderma was very difficult for me. I remember that day I was with my husband when the doctor talked to us about what my condition was, and how serious it was... (Español/Spanish) Lidia: Sclerodermia Descubrir que padecía de esto fue muy difìcil para mí. Ese día estaba con mi esposo cuando el médico nos habló de lo que padecía y lo grave que era...
  2. Lulu M: Grandson with Morphea Scleroderma He survived all this, only to get diagnosed with morphea scleroderma. He is on methotrexate and scarring seems to be less active, and has not gotten any bigger...
  3. Scott: Friend of Patient with CREST One of her first doctors said she had five years to live. Why would he say such a thing? I have read story after story of people having CREST for decades...
  4. Ila: Localized Scleroderma En Coup de Sabre (Italy)It seems as if the illness has stopped, or to put it in a different way "calcified", like they told me in my last doctor's appointment... (Italiano) Ila: Sclerodermia Localizzata a Colpo di Sciabola (Italia) Sembra che la mia malattia si sia fermata, o meglio "calcificata" come mi è stato riferito all'ultimo controllo...
  5. (Update) Dorothy: Scleroderma CREST This is my 39th year with scleroderma so there is not much I do not know about it...
  6. Paolina F: Essential Telangiectasia It initially started on my feet and has progressed to most of my legs, arms, and I have some spots on my torso...
  7. (Update) Kaycee: Diffuse Scleroderma, Polymyositis, Fibromyalgia, and Diabetes I was hospitalized for four days over Easter with what they called right-sided facial cellulitis...
  8. Jenny H: Eosinophilic Fasciitis My legs started changing appearance to a mottled red and white color, and looked like they were made of plastic...
  9. Energy is no. 1 with me. If I had the energy I could still try to do things even if not done as well. Then positive thinking, sense of humor and no pain. Being alone and isolated is the hardest with chronic illness, whether by choice or happenstance. Keeping the fear factor of the unknown seems also to be a daily weight on most of our shoulders, so finding a spiritual anchor of some sort also helps. And as Shelley said, keeping one's sight is at the top of the list for me also. I've already lost my hearing, taste, touching hurts, etc., so I'd like to keep my eyes and my wits about me. But oddly for myself, I've never felt that connected to my body; I always felt it didn't or wouldn't keep up with me. I often resented having to interrupt an activity to eat, go to the bathroom, groom and maintain 'my carcass.' One of my mottoes is, "We are not our bodies." That gives me great hope for the future ;)
  10. Check the medicines you're taking for information on side effects. I have CREST too, and have had so many problems with different meds over the years, thinking it was a new symptom only to find out the new symptom was a side effect from a pill. You can call a pharmacist and tell them the meds you are taking and they'll check for bad interactions. With this kind of disease too many doctors just treat the symptoms with a drug if they can't fix us and many of us end up on too many drugs that can often work against us overall instead of helping.
  11. (Update) Donna C: Undifferentiated Connective Tissue Disease (UCTD) For the most part I have still been doing very good. Some little setbacks here and there but for the most part much better...
  12. Julie T: Surviving Daughter of a Diffuse Scleroderma Patient Our family deals with most difficult situations with laughter and humor, even in the most trying times...
  13. Donato: Systemic Scleroderma with Raynaud's At the beginning I didn't know what it was, but afterwards I got informed and I realized how serious it was... Donato: Sclerosi Sistemica con Fenomeno di Raynaud Mi sono rivolto ad un centro specializzato del policlinico di Bari e in seguito a vari controlli mi hanno diagnosticato questa malattia...
  14. Isabo: Raynaud's and Systemic Sclerosis (Italy) About a year ago I got diagnosed with Raynaud's, since the tip of my fingers had withered... (Italiano) Isabo: Fenomeno di Raynaud e Sclerosi Sistemica (Italia) Circa 1 anni fa mi hanno riscontrato il Fenomeno di Raynaud in quanto mi erano marcite non completamente le estremita delle dita...
  15. Santolupo: Diffuse Scleroderma (Italy) In the exams her illness appears to be halted, but about a month ago she started having stomach problems... (Italiano) Santolupo: Sclerodermia Diffusa (Italia) Da 1 mesetto a problemi allo stomaco non ci capiamo piú niente, siamo tutti male per questa cosa, non viviamo piú tranquili...
  16. Hi Rachel, I understand your frustration. I KNOW the caregivers' role is tougher than the patient's. Having scleroderma myself, I know how much trouble I have eating. I have major GI issues, and between feeling so yucky most of the time, I seldom even have an appetite, but know I have to put something in the belly. What works for me when I don't want to eat (which is most of the time cause I know if I eat then I have to go through the elimination agony); its a double-edge sword. But I'll put myself on an nutrition drink diet. Since we're not allowed to post brand names you can email me if you don't know what drinks I'm referring to. There are now also fruit/vegetable combo drinks. And I can then add toast, crackers, mashed potatoes, oatmeal, instant breakfast drinks and cereals, etc. The only solid food that I can always eat though, is a sugared crueller or pancakes. :-) I don't have any weight issues so indulging in my donut vice is okay for me, plus it makes my stomach feel full. I also take a multiple vitamin daily so I feel I at least get the nutrients I need. But forcing someone to eat when they don't want to or can't always ruins my appetite even more. I would concentrate on what your mom does like to eat whether you agree or not. The appetite comes and goes and a caregiver has little control or say on that. Not much different than trying to get a toddler to eat. Take care, Judy
  17. Hi Mary, Thanks for the input. These shared experiences are comforting on many levels. Anyways, I did mention the viagra treatment to my rheumatologist with not much feedback. Another new treatment that there has been some good results for finger ulcer healing is with a shot of Botox in the fingertips. My surgeon's been trying to get approval to try that for me also. As I've snickered before, with these 'new' treatments we'll be able to go to the grave lookin' good.. Take care, Judy
  18. Hi Karen, Thank you for responding. I'm relieved to know someone who knows how bad the hand pain can be as I thought maybe I'm just being over dramatic or a big baby. But this pain is knee-dropping pain! Sorry you went through it too. I do have some heavy duty pain meds for back up, but since I've been using the silver treated absorbant pad, the pain has almost stopped... for now. My surgeon has considered the sympathectomies but said they might cause other issues for me. I think also, because of the bone infection, the finger has to be amputated as the only other possibility for that is a 2 to 6 week antibiotic drip which may or may not stop the infection and the time factor could just prolong this situation, so... I've had gangrene in the tips of both middle fingertips years ago that didn't affect the bone, and they were just cleaned out and the tips self repaired and have been fairly normal looking since then. The bone involvement makes this different. I'm worried about the bone infection spreading and so is the surgeon. On a side note it's been really interesting watching how the surgeon and his team are planning their strategy, and how one will suggest doing 'this' and they pro or con the whys or why nots of each potential procedure. They seem to really enjoy the challenge part of it. Lots of it goes over my head with all the doctor jargon, (but I have a computer so I research as soon as I get home so I better understand. :blink: ) The other difficulty for me is not knowing what kind of 'blockage' that could be lurking, I feel like a ticking time bomb. Take care, Judy
  19. (Update) Bill Birtch: Diffuse Scleroderma This past summer I took on the shared responsibility of heading up the local chapter of the Scleroderma Society of Ontario...
  20. Dawn M: Linear/Systemic Scleroderma My family and I were informed by the doctors, that the localized/linear form of scleroderma that I was diagnosed with, would never progress into the potentially fatal, systemic form...
  21. High Tech Ways to Extend Your Life: How One Man Regrew a Finger. Dr. Oz shows Oprah Lee's finger. Lee accidentally cut off part of the middle finger on his right hand. Thankfully, his brother, Dr. Alan Spievack, was a pioneer in cellular regeneration. He gave Lee a powder made from the extracellular matrix material found in pig bladders. "I applied that to the wound and just put a Band-Aid over it," Lee says. "I did it for 10 days, and in four weeks, I regrew the finger." Oprah.com. Dr. Oz also says cellular regeneration research is ongoing at the University of Pittsburgh. I printed this out and will take to my Surgeon...Can you imagine?!!
  22. Hi Razz, Like you I have had repeated ulcers on the same fingers, especially my middle fingers with gangrene in both over 30 years ago before I was diagnosed and shortly after my Raynaud's started. I think, even though they might heal, there's a lot of damage still done. As tiny as the finger tips are and with how much we use (and take for granted) them it's really amazing that we don't have more problems. But the blockage issue was a surprise, but it does make sense. The pain was different and affecting all my fingers. The irony right now is my ulcer finger isn't hurting much since they gave me that silver treated felt-like covering. I really suggest anyone with ulcers to try to get some. I've checked and it seems to be available on-line, though I've not seen it in any of the drug stores near me. One piece lasts a long time because you only cut a piece big enough to cover the wound. I don't even want to think about yard work..:-( Take care, Judy
  23. Thanks Shelley, Just got back from seeing the surgeon and having the ultrasound, after driving in 16 degree temperature only to find my truck has no heat!! Must be the thermostat broke so now I have to fit that repair in somehow. Anyway the duplex ultrasound only showed the artery has being very constricted, about a third of an opening but no blockage there so they are scheduling an MRA and angiogram in the neck artery as locating the blockage is key to having a successful amputation healing. Meanwhile the worry is whether the bone infection will spread, and the possible negative affects of the angiogram dye on my already compromised kidneys. Two surgeons discussed the options with me but most of it didn't register as I am also extremely hard of hearing. I don't know whether to laugh or cry! Plus because of my colon inertia, I am SO constipated! Ugh!! I'm overwhelmed right now and need to tend to my bowels before I can think straight. (Funny how constipation affects one's brain...)
  24. I'm heading out for a duplex ultrasound this morning and another appointment with the surgeon. Hopefully they'll locate the blockage and I can get this latest fiasco behind me. I lost my cable yesterday for 3 hours which prevented me from responding to those of you who posted. Yesterday was also my 3 year anniversary since my alcoholic husband deserted me. Yippee! and Good Riddance! LOL! Life goes on with or without scleroderma.. I want to thank everyone for your words of support. I still hope someone who has had an amputation would respond so I would have some idea of what the adjustment will be like. Take care, Judy
  25. Hi Pam, Thanks for your support. Even though we all know the ups and downs of our disease, some have it much worse than others, we or I tend to minimize it not only for myself but for family and friends, thinking that the gruesome stuff of SD 'isn't going to happen to me." But even after doing the 3 Voices of Scleroderma books and editing hundreds of personal stories for ISN, and being quite aware of what could happen I was not prepared for this. One thing we can always count on with SD is there are lots of 'surprises'.
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