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Everything posted by miocean

  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. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. Hi all, Several years ago the unexplained pain in my hands and legs was figured out by you when you asked if I was taking a statin and told me that statins could cause muscle pain. Almost as soon as I stopped the drug the pain went away. Well, put your heads together because I need some help again. To make a very long story short: After a pericardial effusion (fluid around my heart) in December and surgery to drain it I was put on a pain patch, low dose of 25 mcg. I have been continuing using it because it helps with the pain from my calcinosis. A followup echo at the end of January showed a small amount of fluid again. My prednisone was increased from 5 mg to 10 mg and I was put on 200 mg of plaquinil. My other medications have been the same for several months. A couple of weeks ago my skin started to feel like it did in 2004 when I started symptoms of scleroderma. My skin started feeling tight on my back, then the tightness moved down to my hips and the back of my thighs.There is a feeling of pain from the tightness. It is difficult to bend and clothing hurts my body again. My hands are sensitive and my fingers are slightly swollen. I was able to get in with my scleroderma specialist and she tested my skin and said it is still normal again. (I was 45 and am now a 0). She had no answer for the sensations I am having. I have searched for side effects of the new medications but can't find anything. I am going to wean off the pain patch and talk with my doctor about stopping the plaquinil as they are the new things preceding these sensations. Does anyone have any insight or suggestions? Thank you, miocean
  16. Sandi, I had the same issue when I was looking for a diagnosis. I had two doctors say they thought it was scleroderma but my general practitioner said he didn't think so. I finally received a diagnosis by a rheumatologist who referred me to a scleroderma specialist. This was over a 6 month time period and shortly after I was in renal failure. Please try to see a specialist. miocean
  17. Dear dimarzio, WE understand. I am fortunate to have a husband who is very supportive, although after 11 years is going through caregiver burnout. I recently had heart surgery, my lung fibrosis has increased. I have pulmonary hypertension and I am currently on oxygen pretty much 24/7, my GI tract is all screwed up and I have occasional fecal incontinence. I've lost 37 pounds the past 9 months because I have no appetite. My skin hangs on my body like crepe paper. Yesterday I went to a birthday party for a dear friend. It took me almost two hours to get dressed and put on some makeup. I was pretty exhausted starting out. I have another close friend who attended who has several autoimmune conditions including celiac disease and Hasimoto's and we were talking about how no one really understands and how everyone is always telling us how good we look. We took a group picture and put it on a social media site and sure enough, everyone was commenting on how good we looked. We were cracking up! I planned a down day for today because I knew I would be worn out so I stayed in bed all day and just got up and it is late afternoon. I have a sister who has a hard time with my being sick and doesn't like it when I stay in bed all day. That is her problem, not mine. Fortunately, she lives far away. The doctors are another story. The heart ultrasound your doctor ordered can check the pressures in your heart/lungs and see if you have pulmonary hypertension, as well as seeing how the valves work. All you can do is try to educate them about scleroderma. There are brochures available from this site that you can give to people. The doctors I go to are associated with hospitals that are teaching hospitals and the good news is that they are educating the new residents and doctors about the disease. We are here for you on your journey. miocean
  18. It's back. Even with the pericardial window I have fluid on my heart again based on the most recent echo. Since this isn't suppposed to happen I have a bunch of doctors trying to figure out why. And,of course, it's the weekend. I'm getting tired of all this. miocean
  19. I am happy to tell you I am home and was able to spend the holiday with my family. I will work hard to recover from this. This week I should be getting set up with at home services. As difficult as this hospital stay was for me it opened my eyes to a lot of the problems with our medical system. Facilities are outdated, overcrowded, and the staff is overworked. I know everyone was trying their best and am very grateful for that. miocean
  20. I have been in my local hospital the past week. I came to the ER late last Tuesday night. I went through tests on Wednesday that showed quite a bit of pericardial effusion. Thursday I had a procedure to drain my pericardium. A "window" was created in my pericardial sac and during the surgery they drained 1/2 a liter of fluid off. The drain stayed in for 24 hours took another 1/2 liter off. The window is permanent so any future buildup will drain directly my abdomen. I was hoping to go home on Monday but then my kidney levels went all off. I have been put on fluid restriction, a renal diet and was given a special medicine to pull the potassium out of my body. I practically slept on the commode last night. Fortunately, I am improving and my levels are going back to where they should be for me. It has been a nightmare of a hospital stay with dealing with being really sick, crazy roommates, room changes, and being stuck for IV's and lab draws so many times I've lost count. It was so bad I had to ask for the patient advocate. I am tethered to the bed with IV's and oxygen. On top of that I may not be home for the holiday. It looks like my vacation will not be happening. miocean
  21. Hi Tully, It is great to hear such a positive and upbeat story! I've been hit with a lot of negatives lately and you made me feel better. I am an "old timer" on the forum. I am glad you found us and hope you'll hang around. There are several other guys who could benefit from some male company. Continued success on your journey. miocean
  22. The lung disease specialist just called to tell me she has concerns about me flying on vacation next month due to the fluid around my heart, my lung function, and the length of the flight. She didn't come right out and say I couldn't go but did say if my upcoming echo shows no improvement I should consider not flying. So cross your fingers, toes and eyes and send out positive vibes that I get better. miocean
  23. My Echo yesterday showed fluid around my heart. Although I am not happy to hear this I am happy to possibly get an answer as to why I might be so short of breath lately. Although other tests had remained stable up until now my pulmonary function has declined (DCLO is down to 17%). My previous Echo in July did not show this fluid. I was taken off a diuretic in May due to the dehydration from diarrhea and need to go back on it. I also have to repeat the Echo in 2 weeks. I saw a new rheumatologist yesterday at Columbia Medical Center and like her but will continue seeing the one I have used for the past 11 years as well. I am working on getting a team of doctors at Columbia. Tomorrow I am supposed to repeat the 6 minute walk test and see a gastroenterologist. It's always something with this disease... miocean
  24. I'm always thankful for my sclero friends and that you are always here to listen. May everyday be filled with reasons to express gratitude. May we find joy in the simple things and that we celebrate all that what we have and all that we are. Love, miocean
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