KayTee

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Everything posted by KayTee

  1. Thank you!! And thank you very much Amanda. This Quote sustains me.
  2. Hi Kitty: Thanks for ranting - really. It does help and there are so few people who can understand what the constant, chronic issues of this disease are. And this is a wonderful place for all the information and support. I don't know where I got this quote - it may even have been this site - but I keep this on my desk top and open it on those days (frequent) I need it: "We forget that we have lost our lives, we may still be alive but we have lost the lives that we were living prior to scleroderma, that's going to have an impact on us somewhere along the line. Let me stress that it is possible to have even better lives after scleroderma, I insist on having one!" Apologies if this was someone's quote but let me know if you're the author. Good luck Kitty. We all learn from each other. Hugs
  3. Hi everyone, It's been a while since I've posted (sorry - grandkiddies keeping me busy). For the past year I've experienced some shortness of breath episodes that are getting more severe and I'd like to know if these sound like anything other people have experienced. My back will start to ache, often there is a nauseous dizzy feeling, and then a distinct feeling that I cannot get enough air. The last episode (sounds so Victorian!) hit suddenly and I suddenly found myself crouching on the floor gasping for breath totally unable to get up for about 15 minutes. My LFT shows 67% DCLO - at least it did last year - and no PAH right now. I've described this to several doctors and they don't seem to know what it is. I'll be seeing my specialist in a few weeks and will let her know. Thanks for any sharing or information. Warm hugs.
  4. Hi everyone: Just an update: Although I'm going with the lung function tests etc. two of my doctors think it could have been a heart attack when I described it. So more tests. I thought I was pretty educated about things but I did not realize pain was not always a symptom. Perhaps we all try to diagnose ourselves a little too much since we think we know our disease pretty well? Feeling a little stupid here. Hugs.
  5. Dear miocean: What a bad day for you. Lots of hugs and special care are being sent your way. As far as machine malfunctions, my first day of radiation for breast cancer the machine malfunctioned and I apparently got a larger dose that I should have. We trust in our doctors and machines and 98% of the time our trust is well-rewarded. Where would we be without them? But I'm glad you can participate in a study. That may bring some new relief and meds? I have started a new binder for all my tests and meds and labs and etc.etc.etc. I may need some of those stickers doctors use for all their folders. I'm just beginning issues with calcinosis so have no advice - just warm thoughts. More Hugs
  6. Thank you everyone. I've never heard of hyperventilation so I'll check into it. So far the interstitial stuff has been ruled out and numerous tests have looked at my heart and lungs. But what was last year isn't this year right?
  7. Wow. Thanks everyone for all your insights. After years of being a successful To Do list person I am now abdicating that list and starting the Ta Da. Hugs all.
  8. Hi Sunny: I have general morphea and limited scleroderma CREST. Looking back the first issue was with Raynaud's and the CREST was diagnosed first (after a couple of years of course - when I was about 56). But I had also noticed discolored patches on my thighs that seemed to do very little except a feeling of burning in the sun or chills at other times. About 2 years ago the skin discolorations and redness moved to my abdomen/trunk. I was lucky enough to find a dermatologist in San Francisco who had extensive links to the scleroderma community and knew exactly what it was and then confirmed it with a biopsy. On any given day the morphea can be problematic with its burning feeling. Plus I have had to go completely with loose soft cotton clothing and wear lots of layers to keep warm. How sad that you are dealing with this at such a young age. And the doctor's response with look it up online is not unusual. I found many doctors don't want to talk about scleroderma because they either don't know much about it or have no clue how to talk to someone with it. Warm hugs
  9. French knickers and tap pants - all good. I've had some relief with underwear made of Tencel. Good luck.
  10. Thank you Google also. And Genentech and all the other donors. We love you.
  11. Hi Shawn: My experience was that there was some relief with a CREST diagnosis and a sense of now what is ahead of me. But I have found good doctors (not always the first time) and feel like I'm on a positive plan to manage my symptoms. I agree with the low-hanging fruit theory and sometimes had doctors who were very quick to usher me out of the door. Good luck.
  12. miocean: Good for you with the yoga pose. Sometimes doctors think not getting worse is progress but isn't it wonderful when you can see some progress even it is little baby steps. I used to live in NJ so I'm basically a flatlander at heart and I choose my hills carefully! Hugs to all.
  13. Thanks as always for this topic. I thought it was just perhaps stiffness but I have felt very wobbly the past couple of years and am definitely in the eyes to the ground category. Thank goodness I have a one level house - but it's on a hill. well, more precisely lots of hills. But I do some walking, eyes down, and hope no one thinks I'm not looking at them and saying good morning because I'm grouchy.
  14. Good luck Marsha. Hope your news is helpful and ultimately so are the drugs.
  15. Hi Amberjolie: I hope you are feeling better. There are those days to exercise and those days/weeks? when it is more difficult. I try to learn from and love my body even when it sometimes doesn't love me :) Warm hugs.
  16. I'm just adding a warm welcome to all you have already. Finding out about the disease is very difficult; so is knowing what to do with that information. This forum is a wonderful resource and hopefully you will find the doctors you need. Best wishes.
  17. Dear Pboland: I'm sorry you are dealing with this; it is very painful. I don't think I have calcium deposits but I do have ulcers and my dermatologist prescribed retapamulin ointment which is a topical. It does seem to help. Hopefully your doctor can help you with the inflammation. Warm regards.
  18. Hi everyone: Phew! I completed the 2.3 mile walk fundraiser for the Northern California group.OK. I admit I was almost the last person to complete it (those 67% lungs!), but to quote SNL: It was awesome. Hundreds of people, booths with information, lots of sponsorships, but more importantly, everyone knew about the disease or were there to support someone with it. I cried seeing the finish line way before I got there. Volunteers were holding signs about the disease and I had to laugh because one Cub Scout was holding a sign about how difficult it can be to tie your shoes - which I had just asked my husband to do. I'm ready for the next fundraiser. Warm hugs to all.
  19. Hi everyone: I was at the hospital in San Francisco for a pulmonary appointment when I noticed a brochure about a fund-raiser sponsored by a local scleroderma chapter. I was stunned. This was the first time I had ever seen a public fundraiser run/walk for scleroderma. I signed up, linked to the page, went on FB and for the first time 'announced' I had scleroderma and was going to participate in the walk. Although my family and close friends know about it, I haven't generally let people know I have this chronic disease. When I had breast cancer it was fairly easy for people to understand what was going on and decide if they wished to donate or participate in events and organizations. Scleroderma is a different, more complicated beast in many ways. Within hours some friends had donated and sent messages. How wonderful - and thanks for ISN always being there whether the closet door is open or not.
  20. Dear Mando: My PFT showed a DLCO of 66% several years in a row and my doctors had concerns about PH because the echoes showed higher numbers than they would have liked. However, after the right-heart catheterization they said I didn't have PH and the numbers were pretty good. I moved on to a pulmonary clinic and will have another PFT in April. One of the hardest things for me to deal with is what all the numbers mean - or sometimes don't mean. I do have shortness of breath but have learned to structure my day around activities I can do and leave breaks in there also. (Of course that doesn't work when grandkiddies are around!). Good luck.
  21. Hey - it's wonderful you're growing runner beans. Holes, bugs and marigolds are all, in their way, good. But I'll go with large dogs anytime.
  22. I love this thread. Don't really think it's working yet :( but I'm trying.
  23. Judy: I hope you are doing better. What a tough event to go through. So sorry you are dealing with this.
  24. Dear miocean: "I don't want to go back there." You won't. All your posts are reflective and yet you are always moving and looking forward. We have all been in waiting rooms, labs and hospital rooms, and I have sad memories of the radiation waiting room while having treatment for breast cancer in '08. (Interestingly, the chemo doctor was much more upbeat.) And we are all resilient men and women who are proactive and fight back against the disease. Here's to more good labs and a happy kidney. And warm hugs to all.
  25. Best wishes for a speedy recovery. Warm hugs