miocean

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About miocean

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    NJ

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  1. Kathy, I feel for both you and your husband. I have always felt the caregiver gets the short end of the stick. Everyone always asks my husband how I am doing but rarely how HE is doing. I hope you are able to work things out. I think you will and your relationship will come out stronger in the long run. miocean
  2. I know it is confusing, frustrating and painful. After 12 years I feel like you but having this forum makes me feel less alone. Keep posting for as you share and ask questions we all learn. Welcome. miocean
  3. Jo, Thank you for all you do for all of us. Thank you to all the volunteers who keep us all up and running. miocean
  4. I think the waxes and wanes part is important to know. After sudden onset diffuse and scleroderma renal failure I found almost immediate improvement after a kidney transplant. I felt like I was at a plateau for about 5 years and now everything is back with a vengeance. All I can do is hope that the waning part will come soon because having tight skin again is painful. My lung function has declined and my oxygen needs increased to where it will be a totally new lifestyle to adapt to. I didn't think this would happen, specially the skin changing again. miocean
  5. I had never seen this before and am glad you brought it to our attention, Kathy. Thank you. miocean
  6. Thank you all so much. Love, miocean
  7. Dear Sarinda, Scleroderma affects everyone differently. I have sudden onset diffuse and within a month of beginning I had skin hardening and swelling. I broke the straps on a new pair of shoes because my feet swelled so much. I had total body hardening within 6 months and still didn't have a diagnosis. I wish there were crystal balls that would tell us what will happen. I am going through a flare right now where my skin is hardening again and I feel like I did I the beginning after 6 years of doing pretty well. Are you seeing a scleroderma specialist? I'm so saddened you are going through this. How do you manage to consume so many calories with a shake? I've lost weight and just don't feel like eating so I could use your help. Best to you. miocean
  8. My mother-in-law was diagnosed with scleroderma a few years before I was. She was in her late 70's/early 80's and had limited. I was diagnosed at age 52 with diffuse. We had different occupations but both lived in an area where there are a lot of refineries. Almost all of her 7 children, 6 of them female, have some sort of autoimmune disease. All of my cousins on my mother's side of the family also have autoimmune diseases. My mother-in-law and I were the lucky ones to get scleroderma. I just hope it stops here and none of my nieces/nephews ever have to deal with this. miocean
  9. All of my symptoms from before diagnosis seem to be back. My hands are curling and I have calcinosis on my knuckles. So painful and a loss of mobility. My hands are inflamed and so are my upper legs from my knees to my hips. My back feels really tight and it is hard to reach up. I can't bend down to pick up something from the ground. This is how I felt in 2004 when I was going from doctor to doctor trying to find out what was going on. For those of you who may not know me, I had sudden renal failure in 2004 and received a kidney transplant in 2010. It was like a miracle and everything improved. By 2013 my lung function declined and I had pulmonary hypertension so I applied for a lung transplant at two centers but was turned down. I also have really large calcinosis deposits on my buttocks making it very uncomfortable to sit. This past year was very rough on me health wise. A year ago April I got food poisoning and suffered with severe diarrhea for months. Even after 5 days in the hospital and numerous tests they found nothing wrong. Then in December I had fluid on my heart and had a pericardial window created. 9 days in the hospital. Doctors started switching my medications and adding things, one a very dangerous drug that I have just managed to get off of. My breathing has worsened. I spent most of the past 6 months in bed. I am hoping this is all medication related, compounded by the inactivity. I am as frustrated as I was when I was seeking a diagnosis. I have a scleroderma specialist, and saw her a couple of weeks ago. She said my skin wasn't hardening again but couldn't tell me what was causing the tightness. I am going to physical therapy and doing hand exercises. I feel like all I've been doing is going to doctors. I am so emotionally and physically drained. Ever the optimist, I am certain that once that nasty medication really gets out of my system and my other medications are adjusted I will feel better. It is just very difficult right now... miocean
  10. Hi Kristyn, I can't answer your questions about morphea as I have diffuse scleroderma but I want to welcome you to the forum. Others are bound to have some answers for you. I know I itched like crazy in the first few years and still go through periods if itching 12 years later. miocean
  11. I didn't get any answers from my PH doctor. The fluid on my heart is minor and she is not concerned about it at this point. She is adding some thyroid tests to my labs which I will have drawn next week. She thinks the issue is rheumatological and that I should talk with that Doctor. I've already seen her to no avail but will contact her again. They have doubled my diuretic. Maybe that will give me some relief miocean
  12. Unfortunately, no. My legs are so swollen from the knee up I can't even put on socks by myself. The skin hurts and feels like it is going to rip. My right leg is more swollen than my left. I am going to the pulmonary hypertension doctor in NY tomorrow for an echo but called my nephrologist today and he sent me to the hospital to have a Doppler of my legs to check for blood clots. Good news is, no clots but then what is going on? I am so done with all of this. I'll think positively and hope that I will get an answer tomorrow. miocean
  13. I had 5 iron infusions over 5 weeks and was told it would take about 2 weeks after the first one to see a difference. My levels have come up but they are still low. I don't know about the edema. Have you seen a cardiologist? Compression stockings or socks and keeping your legs elevated can help. Just out of curiosity, does your doctor think the edema and your iron levels are related? I hope you get some answers and relief soon, miocean
  14. Today I went to the ER with high blood pressure. My numbers were in the 170's and I couldn't get them down. I am so tired of going to different doctors that I just went to the hospital. I was concerned because one of the reasons my kidneys failed was my blood pressure skyrocketed and I didn't pay close enough attention. After iv fluids it came down to the 140's. My doctor is lowering my prednisone (yay) and I have to monitor it at least 4x's a day. I hope this will relieve some of the negative sensations I've been experiencing. miocean
  15. quiltfairy I went through so much with my initial experience of scleroderma renal crisis that I blocked the ability to cry. Therapy has helped but I still have difficulty. Emotions will occasionally cause a tear or two to roll down my cheeks. If I really start to cry it is something that is major. I wish I wasn't like this. You're right, though, crying is an acceptable response and we release through our tears. miocean