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Everything posted by Sweet

  1. Hi Bud, I'm sorry to hear about your son Jesse. Have you looked into a supplementary insurance? I have Medicare, but I also pay for a supplement insurance that pays for everything Medicare doesn't. Just a thought. Best to you all.
  2. Hi Jeannie! So great to hear from you. I have always enjoyed your posts. Much love to you!
  3. Hi Anona, Welcome to these forums! I have been on Plaquenil for 18 years. I did have side effects for the first 3 months. Which according to my Dr. is how long it takes to see if it helped me or not. The side effects I had was nausea and severe hair loss. It almost looked like I was on chemo. I hung in there and all that settled down and my hair came back. No problems since. You should have a baseline eye exam, and one every six month for the first two years and then one a year after that, as blindness can take place and once it's starts it irreversible. I have exams every year, along with ultrasounds and a few things I don't know what they are called, but its extensive. I've never had a bad eye exam. I would encourage you to stick with it. Not only does Plaquenil help with pain, but it also helps with fatigue AND... here's the biggie, it can slow down your progression or halt it at the stage you are now. Please let us know how you are getting along over time.
  4. I've always had a supportive spouse so I'm grateful for that. However many friends and family just don't get it. I went to great lengths in the beginning to explain. I gave printed information, websites, had one on one conversations, and with some it just didn't matter. I would get "Well maybe tomorrow you'll be all better", or "It will be so nice when you are over this" My heart goes out to you because when it's a spouse that's a tough one. I know of many marriages that didn't make it through the diagnosis. Sad but true. I do hope she can grow to have an understanding. For the rest... I quit wasting my time. Some will never get it.
  5. Hi, I would definitely mention it to your primary care provider. And I get what you mean about being the professional crazy patient. So sad that at times we have to feel like that.
  6. I do believe it's sclero related, and my Rheumatologist agrees. As to what helps, it's hard to say. It comes and goes all on its own. It's so frustrating. I only shower 3 times a week and I use an oil to clean. I use NO rags or any scrubbers, just my hands. I keep the water close to cold. The hotter the water the worse it is for me.
  7. Hi SoulDancer, I can relate completely, but I don't think I'm as severe as you. I'm truly sorry. My issue doesn't happen every single time, but I would say 80% of the time. There is no rhyme or reason to it and I've tried all kinds of things. It's frustrating I know. I hope the links were helpful to you.
  8. I'd be looking for another doctor.
  9. Hi, I'm so sorry to hear of your discomfort. I can relate all to well. I must say I'm disappointed in your doctor for his response. As you have already read from previous responses there are so many options. Jo gave you a link to find a scleroderma expert. I highly encourage you to make an appointment with one near you.
  10. What a great topic! Something I had never even thought about.
  11. Hi Mando, Truly sorry to hear of your cardiac problems, but really happy you are following up on it! Will be patiently waiting for more info. :) Shelley, you are always such an inspiration to me and others. Great advice my dear friend. xo
  12. Hi Mando, This is very interesting to me. I've been on hydroxychloroquine since 1999. I have often had irregular heart rate, mostly tachycardia, which has lead to numerous cardiac work ups, but everything ends up being normal. I think I'll do further research on this. Please let us know what your ECHO shows and if your rheumatologist decides to keep you off the meds. I went off them once and within days could not function, I was in so much pain etc. Please let us know how you are getting along.
  13. Hi Matt, Welcome to our forums. I'm really happy you found us. I'm sorry to hear of your localized Scleroderma. This disease can certainly be a challenge, but sounds like you are handling it like a rockstar. Jo has provided you with many good and informative links. I do hope you find some answers in them. Again welcome!
  14. Tears! So sad to hear this news. Sending love to her family and friends.
  15. Hi Amanda, I use all of the above, and have for 30 years with no adverse reaction. Both my rheumatologist and dermatologist are on board with it, and state its perfectly fine. My two cents worth anyway. :)
  16. Thank you for the info. I would love to know what it is if you wouldn't mind PM me. :)
  17. Hi Linda, Welcome to the forums. I'm so glad you've found us. Fatigue indeed is certainly an issue. It's a BIG one for me. You're starting out right by seeing a Sclero specialist, so kudos to you on that one. Really look forward to hearing the outcome of that visit. Keep us posted.
  18. That is so awesome!!!! Its nice to have a face to face connection.
  19. Awe, love this and thank you!!!!
  20. Hi Franky! Welcome to the forums. I'm so glad you found us. All of this can be very confusing indeed. As was already mentioned, blood tests are not always reliable. AND a good scleroderma expert, looks at the big picture to make a diagnosis, which at times can take a very long time. You were given a link to find an expert, and I highly encourage you to do so. Best to you and I look forward to hearing of your progress in this journey.
  21. Congrats!!!!!
  22. Hi Sandi! Welcome to our family. All of this can be so confusing, and the link that Jo gave can help you to find a doctor that is an expert in this field. It can make all the difference. So please find one close to you and make an appointment. Looking to hearing updates!