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Everything posted by Snowbird

  1. Hi Amanda Great job in explaining along with the pictures provided. I, too, can only imagine the pain associated with them. I have developed one patch which is now burnt out on my face. I also found the itch was unstoppable but mine pales in comparison to the bullous form. Jo's statement is ever so true. It is also good of you to educate us along the way, thank you!
  2. Hi Has anyone found it best to raise the head of the bed 4" or 6" for reflux? Not sure if it will make much of a difference? Thanks.
  3. Hi Jeannie Yes, it's definitely so nice to have you back with us! I'm really sorry to hear that you've had such a difficult time though, my goodness, you were so ill. I'm glad to hear that you are on the mend now and I do hope your pain settles down soon for you. Congratulations on the new grandbaby from me as well!
  4. Hi Shawn Welcome, you'll find a wealth of factual information here from people in the know. It's a great place to ask any questions. I have learned so much being here and continue to learn more all the time. Because your bloodwork tested positive for ANA/SCL 70, I would recommend that you definitely see a scleroderma rheumatologist/expert too. Not all rheumatologists are familiar with this disease. Fibromyalgia and Scleroderma are 2 different illnesses. I have fibromyalgia and many years later, when my bloodwork tested positive for ANA (CREST), I saw a scleroderma expert. Best thing I did for myself was to see her and I think you will find the same. I am monitored regularly by her now. As Jo mentioned, bloodwork alone is not enough for a diagnosis. Other symptoms also need to be present. My understanding is that there are usually 2 or more other symptoms as well before they diagnose it as scleroderma. But then again, in other instances, some people never show positive bloodwork but have symptoms, hence they get a diagnosis. Sounds like you have already figured out that these autoimmune diseases are quite a challenge to pin down. I also hope you keep in touch and let us know how you are getting along.
  5. Hi miocean Sorry, I don't have any knowledge about chemical peel that can help you either?
  6. Hi I will make a note of it for my next doctor's visit for sure, it's really the only thing that makes any sense. I have the same problem sometimes when bending too which also lets me know sometimes when it's not behaving. Yes Amanda, I agree and that's my little mission here, to find a solution so I can keep these old bones of mine moving. Thanks to all.
  7. Hi All Just wondering if any of you experience worse reflux while exercising? Every time I work out lately, it really sends my reflux into a tither. I walk on a nordic ski machine one day and walk only on a treadmill (no running) the next time. I alternate these two exercises so that I exercise every other day. It's not like I'm doing scrunches or anything strenuous that puts my stomach in a knot. I've been doing these workouts for about 21 years without prior reflux problems until the last few months. Now, on the other side of the coin, my reflux has also been worse lately. Curious, does anyone have any thoughts as to why it might be so bothersome for what I'm calling somewhat mild exercise? Wondering if it could just simply be because my reflux is getting worse perhaps...
  8. Hi Amberjolie I'm so glad you found a doctor you can connect with and like. Where is she? Mine happens to be in London...wonder if we are seeing the same specialist?
  9. Hi Climber Mine seems to be a teaching hospital. One of her trainees will come in and ask me everything first. Then he/she goes out of the room to discuss with her. Then, she comes in to see me as the lead with a couple of them, points things out to them (ie, my hands or whatever) and they discuss/learn while she asks me questions, moves my joints, etc. I only need to see her once a year....hope it stays that way (not that I don't like her of course :D because I surely do!)....it simply means that I'm doing just fine. It can take a long time to get in to a specialist here too sometimes though also due to a shortage of doctors.
  10. Hi Ro Well that's a hard one for me to answer because I can have an episode actually just walking from one room to another. I agree with the others, air conditioning also has its draw backs. I have episodes while changing as well as while showering if the water is too hot, there's no winning here. Any shift in temperature anywhere seems to find me but I believe the warmer it is, the better it is for me personally as far as my Raynauds goes. Wet, damp weather is also pretty unfavourable. One of my doctors told me I should not be in temperatures lower than 80 degrees...so I have to go with JudyT, a more even climate would be easier to live with.
  11. Hi Marsha I agree too, it is good news about your bloodwork. I'm excited for you as well to get a 3rd opinion. Can't wait to hear what they tell you :) . Sorry to hear your sclerodactyly has worsened. I know it is terribly scary thinking that you might need chemo treatments. If it helps, I was told just recently that they have made huge strides with the new chemo treatments (that was straight from the mouth of an oncologist too). So hopefully, you will barely notice anything if you do end up having to get treatments. Keep us posted and good luck with your next appointment.
  12. Hi Sunflower Been there, done that and I know you are not in a good place right now because you are so scared but that will ease in time for you although you may not think that just yet. Can I please recommend that you do not go and read all about this disease on the internet? You will find the best and more importantly, factual information from this site. Just ask all the questions here you want and rest assured there is always someone in the 'know' from experience willing to help. If you do say the general area in which you live, one of the ISN leads will be able to provide you with a list of sceroderma experts either in or close to your general area. The best thing I ever did for myself after my scare like that was to see a scleroderma expert. I do hope you tell us a little more about yourself if you are feeling up to it. If not, that's ok too. It's all very mind boggling to say the least, especially in the beginning. Slowly, with some answers to your questions, all the bits and pieces you glean from here will help you to understand this disease a little better. Take care.
  13. Miocean You have said it so well for both you and your donors family, and yes, you certainly have come a long way these last 2 years. Congratulations are definitely in order and I too send them to you! :) JudyT Sorry to hear you are currently in a decline phase. Feeling dreadful and throwing up sure doesn't help that cause, I agree. Let's hope that perhaps the new doctor you need to see in the interim will be great too...might not be so bad, maybe you will be pleasantly surprised? Wednesday will be here before you know it too and then your tooth can be fixed. :emoticons-yes: One by one, these things that feel so big to you right now will slowly disappear. Sure hope you feel better soon!
  14. Thanks for the update Jalee. I hope your new appointment helps sort things our for you as well. Amberjolie, where is your new doctor...wondering if she is in London (that's where mine is).
  15. Hi Carole Glad to see you found your way back to us. Like the others, I am also looking forward to catching up with you. Also good to hear you are feeling better lately too.
  16. Hi I actually have a fan heater at my desk at work (but I am not in the UK). Mine has an automatic shut-off if it tips over, etc. Perhaps if you had that type, they might let you have one since it has a built-in safety shut-off feature? Only a thought?
  17. Hi Judy I'm sorry to hear you were so ill. It's good to hear you are recovering and hopefully about to eat something you can enjoy! I hope you are well enough and get to go home tomorrow.
  18. I'm in. I get those painful splits too. You can also try Fucidin (fusidic acid cream), prescription strength. It is known to be stronger than regular over the counter antibiotics although for us it may not be any better for healing unfortunately :( but worth the try depending on how long it takes you to heal. I also cover mine with a band-aid. I agree, nail hardener is the only thing I've found as well that stops my nails from breaking in the pink...as long as I remember to apply it of course
  19. Hi Jeannie Great to hear you are doing well with one down. Yes, do tell, how many more of these do you need? Wishing you a speedy recovery!
  20. Hi Marjalinajolie Just wanted to welcome you as well. Sounds like you have the ball moving and are perhaps going to seek a scleroderma expert as well. I can tell you that that was the best and smartest thing I did for myself. I strongly recommend that you do not read all about this illness on the internet, it's a bad place to go. Been there, did that, not going back either. This is the best place for factual information and there is always 'someone in the know' so it's a great place to ask questions. My tests were for 'baseline' :)
  21. Hi Lynn I'm also sorry to hear your news. Try to take one day at a time so that hopefully you are not hugely overwhelmed. It is such a difficult time and no doubt everything likely seems huge to you right now but that will lessen in time as well. You are in my thoughts too. I hope you get all settled in nicely soon and find a way to have your pets too. We'll look forward to your return with us. Take care.
  22. Yes ladies, great poems. Good touch too Kamlesh!
  23. Welcome Lazychain (great name by the way!) I could not agree more that you should have a 'scleroderma specialist' if you do not already have one. That was the best and smartest thing I did for myself for sure. I also think you should have that lump looked at separately. It might not be scar tissue at all as Judy mentioned. Mind you, not all lumps are bad either so please do not worry yourself ahead of time. I actually have a few lumps, not calcinosis and none of which are the worrying kind luckily for me but I definitely get any new lump checked by my doctor. I don't want to become complacent either. This is a terrific site for asking all your questions, there is always someone here 'in the know' :)
  24. Me too, wishing everyone a Happy New Year!
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