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Judy Devlin

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Everything posted by Judy Devlin

  1. Thanks for the hugs, Nina. Its amazing how painful our toes and fingers can radiate when they're affected with Raynaud's vasculitis and ulcers. I've had Raynaud's since the early 70s so I know there has to be lots of vascular damage. A tip for Raynaud's in the feet- wool or cashmere socks. Light weight in summer and heavy weight in winter. Although a warm climate is probably better. I live in NH and it has been a very cold and dry winter which didn't help with healing. I couldn't keep enough lotion on my hands before they would dry out quickly. But my toes were fine with wool socks:-)
  2. When I get my ranch I'll remember this story..LOL! Another friend after I told him of my upcoming amputation sent me a video of a guy with no arms playing a guitar with his toes. Both are hopeful images. But nevertheless, it is quite traumatic for me right now. I have been paying attention at the everyday things that we use our middle fingers for and it won't be a big loss:-)
  3. I have had several digital ulcers over the many years of my SD, even before I was diagnosed. A hang-nail, paper cut or dry skin crack on a finger tip would often take months to heal. I got good at taking care of them with betadine, neosporin, bacitracin and even active manuka honey and occasionaly a prescription of antibiotics; warm water with epsom salts all worked for me in the past. However, my newest finger ulcer, which started as a hang-nail in October 2008 has been quite different. In the beginning it progressed, got better, worsened, over and over again. Those of us who have them know they are more of a nuisance and we go with the flow. In January I showed my rheumatologist when it didn't look too bad, but I mentioned how my other fingers were painful and I wondered if it was sympathetic pain or maybe I was becoming allergic to latex from the bandaids. I asked for an antibiotic but we both got side tracked and I left without that prescription. In the next couple of months the finger pain became unbearable, something I had never experienced with any other digital ulcer and I started making phone calls, but my doctor was off on the days I called and a very unhelpful receptionist would tell me to call my Primary Care doctor, which I didn't have, so I'd ask if I could leave a message etc., to no avail and I'd slam the phone down. Eventually I ended up driving myself to a local ER as the pain was horrendous. The ER doctor told me he couldn't do anything and referred me to a surgeon with the hope that the surgeon could at least clean it out. The surgeon said she couldn't help and did not know much about SD so contacted my rheumatologist and another surgeon at the Medical Center I usually go to. The plastic/vascular surgeon did an ultra sound with a small portable one (very cool piece of equipment) and discovered I had an artery blockage. We have two arteries that go into each hand. My left hand read two arteries working fine, my right hand with the ulcer only registered one. Voila! No wonder the ulcer wasn't healing. He did xrays and discovered that as a result of my badly infected ulcer I now also had a bone infection and amputation is the only option. They have to find the blockage to treat that before he'll operate or the amputation won't heal. So some tips I learned in this process. Water is not good for digital ulcers unless it's sterile. Wound should be kept dry when its festering. The surgeon gave me something that I'm guessing only surgeons and those who tend to wounds know about. It may be available without a prescription but I'm not sure. Anyways if anyone has an ulcer try to get a silver-coated absorbent dressing. (If you PM me, I'll let you know the brand.) It's like a piece of felt that you can cut to size to cover your wound/ulcer. You just lay it on the wound and bandage. This dressing should be changed every 2 or 3 days. And don't get it wet. Only sterile water (Where does one get that??) should be used if you need to loosen it when you change your dressing. So, don't assume an ulcer that doesn't heal is just a typical SD digital ulcer. Seek a vascular doctor about possible blockage, especially if experiencing severe 'prickly', moving sharp pains and a deep bone ache in the extremity. (I thought the bone ache was just arthritic stuff.) Also, the thing that is most surprising is 'warm water baths' are not our ulcer's friend. The amputation will probably occur within the next couple of weeks. In the meantime I am being so so careful that I don't cut another finger. I hope this helps others here with digital ulcers. I'd be interested in hearing from anyone who has had an amputation and how long it takes to heal, adjustment, etc. Thanks, Judy
  4. Sheila Z: Scleroderma I would like to first say that this site has been a great help for me to understand what is happening to my body and my life...
  5. Edith: MCTD with En Coup de Sabre/Parry Romberg's, Lichen Sclerosus, Rheumatoid Arthritis, Sjogren's My general practitioner is fabulous, but at the end of the day it is not enough. I would be lost without people like you...
  6. Laira: MCTD, Scleroderma, SLE, Lupus, CREST, Lymphoma I was just seventeen when I was told I had rheumatoid arthritis...
  7. Simo S: Raynaud's (Italy) Hello, I am a twenty-nine year old girl who was diagnosed with Raynaud's about ten years ago... (Italiano) Simo: Sindrome di Raynaud (Italy) Salve, sono una ragazza di 29 anni cui fu diagnosticata la Sindrome di Raynaud circa 10 anni fa...
  8. Clod: Raynaud's Syndrome (Italy) Since I was thirteen I have always suffered from the cold, so much so that my hands and my feet became purple in the true sense of the word, afterwards white and later red... Clod: Syndrome Raynaud (Italia) Dall'etá di tredici anni ho sempre sofferto il freddo a tal punto che mani e piedi diventavano viola nel vero senso della parola, poi bianche e infine rosse...
  9. Janet Q: UTCD or MCTD I also experienced new symptoms; joint pain, muscle aches, headaches, very painful carpal tunnel syndrome in both hands, back and neck pain, the list grew on and on...
  10. Suzy G: GAVE (Watermelon Stomach) and Primary Biliary Cirrhosis Just over six years ago I was diagnosed with primary biliary cirrhosis (PBC), a liver disease. Since then everything else seems to be happening to my body...
  11. Angela O: CREST Now, the calcinosis is so bad on my fingers, that I find ordinary chores harder and harder...
  12. Chela: Diffuse Scleroderma My facial expression changed a lot, but this went unnoticed to the people that do not know me very well... (Español/Spanish) Chela: Esclerodermia Difusa Fue terrible para mí; las facciones de mi cara cambiaron mucho, pero sin ser notorio para las personas que no me conocen...
  13. Vali: Mother of Linear Scleroderma Patient (Italy) A dermatologist diagnosed her with Linear Scleroderma, but another one said it was Linear Lichen Planus. My daughter's feet, when she walks, turn inside, and she is often warm, but doesn't have a fever... (Italiano) Vali: Sclerodermia Lineare (Italia) Un dermatologo a diagnosticato una Sclerodermia Lineare. Un'altro invece: -Lichen Planus Lineare. Mia figlia ha I piedi che quando cammina li butta in dentro, e si sente spesso accaldata ma febbre non ne ha...
  14. Sbirulino: Limited Systemic Sclerosis, First Stage Biliary Cirrhosis (Italy) They diagnosed Raynaud's Syndrome, until there was amputation of the first and second phalanges, which caused total invalidism... (Italiano) Sbirulino: Sclerosi Sistemica variante Limitata, Cirrosi Biliare Primitiva (Italia) Mi avevano diagnosticato la sindrome di Reynaud, fino all'autoamputazione delle Ie e IIe falangi arrivando a portarmi ad una invalidità totale del 100%...
  15. Hi Pam, I'm anti-drugs too unless they do what they're suppose to do with minimum side affects- Anyways I finally did a better google search and found a forum of people who have had colectomies and many have to take imodium to control the diareaah= so that stinks. Many also talked of major weight gain (??) which sounded odd, but someone mentioned a doctor said that maybe after years of poor food absorption, after a colectomy the body starts to absorb the food (fat).. So I think I'll stick with constipation as the surgery is very drastic and I didn't read anything that suggested one's quality of life was any better after the surgery..and I'd rather be thin. I was taking the miralax daily but because of the warnings regarding kidney issues my GI and I came up with the 'cocktail' I mentioned above. Stay warm, Judy
  16. Hi all, Oh, pooh is one of my favorite topics..LOL because it has been such a major issue for me for years with my CREST (now upgraded to MCTD). My GI and I are discussing a Colectomy- complete removal of bowels. This is an extreme measure but the idea came up because it seems nothing moves my bowels. We got to talking about how obese people and stomach reducing surgery helps some so I asked what about shortening the colon, getting rid of some of the nooks and crannies, and twists and turns so the 'fecal matter' could just come out quicker. After some research I think I'll hold off, as constant diarrhea seems to be the result (although that kind of sounds better than more years of constant constipation). I haven't been able to find any info of patients who have had a colectomy. Anyone here had that procedure? My concern would be the quality of life after that surgery. Right now I take 3oz of milk of magnesium followed by 12 oz of water mixed with a capful of miralax as a chaser every four days, and am having some relief/results.
  17. Hamza: Linear Scleroderma I would really like to know whether there are any athletes who overcame severe linear scleroderma in their leg...
  18. Peggy: CREST and Raynaud's Years later, at fifty-six, my family doctor said he thought I had scleroderma because I was having trouble with my hands, and my fingers looked like sausages...
  19. Mariam: CREST I am feeling very low at the moment as after seven years of dealing with all the changes, and trying to carry on as normal, I feel like I have lost...
  20. Eli: Sclerodermia and Raynaud's Syndrome (Italy) After thirteen years of suffering, he has given me a diagnosis and a cure, before it is too late, I hope... (Italiano) Eli: Sclerodermia e Sindrome di Raynaud (Italia) Finalmente dopo 13 anni di sofferenza ho diritto anche io a una diagnosi e una cura,prima che sia troppo tardi. Spero... Alda: Raynaud's Syndrome (Italy) Fortunately I am going through menopause and I am having hot flashes. But in between hot flashes I feel like I'll die from the cold... (Italiano) Alda: Sindrome di Raynaud (Italia) Per fortuma che vivo il periodo della menopausa ed ho anche le vampate. Ma tra una vampata e l'altra muoio di freddo
  21. Sandra C: Morphea A few months ago I began a special treatment with UVA 1 photo therapy and my condition has improved considerably... (Español/Spanish) Sandra C: Morfea Desde hace algunos meses empecé un tratamiento especial con fototerapia uva 1, y he tenido gran mejoría... Jose G: Linear or Morphea Scleroderma? The spot I have is causing muscular atrophy and loss of strength... (Español/Spanish)Jose G: Esclerodermia Lineal o Morfea La mancha me está provocando atrofia muscular y pérdida de fuerza...
  22. (Español/Spanish) (Update) Jeins: Esclerodermia Sistemica Difusa y Dermatopolimiositis Ya había escrito mi historia hace 3 años cuando recién estaba pasando por la enfermedad. Para quienes no lo saben tengo esclerodermia y dermatomiositis desde los 19 años.
  23. Mila: Morphea Now I am twenty-five years old, and that spot has grown throughout my right leg and on one side of my belly button... (Español/Spanish) Mila: Morfea Hoy en día tengo 25 años y esa mancha está en toda mi pierna derecha y al lado de mi ombligo...
  24. Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite... (Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
  25. Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
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