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About Sweet

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  1. Hi Brenda! Welcome! I'm sorry to hear about your diagnosis. Personally for me yes the digestive problems come from Scleroderma. It's a tough one to manage for me.
  2. Sweet

    Giving up.

    Hi Quiltfairy, I'm sorry about your results. I certainly don't mean to belittle your situation, but something Jo said reminded me of what I do. I ALWAYS imagine the worst lol The outcome rarely comes close to my crazy imagination. I do this thing with myself when overwhelmed with the unknown. I play "What's the worst thing that can happen?" When I get down to the brass tax of it all, and how I would deal with that worst thing, for some reason, I relax. I realize no matter what it is I can get through it. I'm a strong person, or used to be... So many changes in my life this past couple years, personal and health related. My life as I've known it, isn't my life anymore. Acknowledge, process, adapt and let it go. Easier said that done, but that's the only way I can get through, because as you know many don't get where we are coming from. Love ya!!!
  3. Congrats, you rock my dear!!!! We so appreciate all that you and Shelley do!
  4. Sweet

    New to forum

    Welcome to our family!
  5. Sweet

    I missed this forum for a while.

    Just want to send you a little love and a hugs. You're not alone. We love you.
  6. Sweet

    Plaquenil Lichen Planus

    Hi DRainey, I had to look that up because I've never heard of it. I know several that have been on plaquenil without issues, and I myself have been on it for 18 years. No problems. The main concern with plaquenil which I'm sure you know is it can cause blindness, so getting a baseline eye exam and then repeat exams every 6 months to 1 year are critical. Again no problems for me at all. My rheumatologist's nurse has been on it for 30 years. It works wonders for me so I sure hope I never have to go off of it, or I would never be able to get out of bed.
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    Why do we panic?

    Hi MaryBeth, I have been on Plaquenil for 18 years, no problems at all. The way it was explained to me by my Scleroderma specialist, is it has the ability to slow down and or HALT any progression. So I'm all on board with that. It helped with my pain as well tremendously . It is extremely important however to get regular Plaquenil eye exams. One right away as a baseline and then depending on what your doctor wants, every 6-12 months.
  8. Sweet

    Heredity in scleroderma

    Hi Tazzie, I'm sorry to hear about your daughters diagnosis. Jo gave you a few good links, I hope you find them helpful. She also gave very good advice. Thank you for posting, and please give my best to your daughter and you!
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    Jo Frowde: ISN Board of Directors

    Congrats Jo! You're a rock star! Thank you for all that you do.
  10. This is so true, and so often it happens at night. In all my years nursing, you'd be surprised how many people presented to the ER thinking they were having heart attacks, but really it was a panic attack/anxiety. It can be frightening.
  11. Sweet

    Upper Endoscopy/Colonoscopy

    Hi Clementine ;) Nice to see you post. I see you already received an answer, but my experience is there really aren't any rules when it comes to a lot of the testings we receive. It truly depends on you, your symptoms, and your providers preferences. My motto is unless it's absolutely necessary, I give it a pass.
  12. Sweet

    Expenses after Medicare

    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.
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    Hi Jeannie! So great to hear from you. I have always enjoyed your posts. Much love to you!
  14. 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.