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About HeatherT

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  1. I just wanted to post some great news. a couple of years ago I remember posting a question to the forum about adopting. I got some great support, and a little info. I thought I would get back to everyone about our adoption. We have been matched to a 14 month old little boy from Ethiopia. We travel to meet him on Thanksgiving and then once his immigration paperwork is complete we will return to Ethiopia to bring him home (January or so). We are using an international adoption agency. A little history. I was diagnosed with diffuse scleroderma 6 months after I gave birth to our first child (
  2. Hi there, I have been thinking about this surgery lately as I have a persistent, painful, purple finger and I don't know what to do! I'll be following your journey! Good luck! Heather in central NY
  3. I just wanted to chime in on this because something similar happened to me and I feared that it was just the next problem that was going to be chronic, incurable and here to stay but...it was my meds. I was on Prilosec and its know to cause cramping and such in some folks after prolonged use. I guess that was me, and maybe that is you? Just thought I would bring it up. Take care!
  4. Oh how I want another baby! Unfortunately, cI am told that cellcept and babies do not mix. I am 38 with a three year old at home and almost 3 years into this disease. I have toyed with the idea but am presently investigating adoption. I'm not sure the adoption agencies are handing out babies to mothers with Scleroderma frequently. I don't want an only child but if thats all I can have...I'll take it for sure! Good Luck!
  5. Hi There, I just wanted to add something that happened to me. I was having some problems with stomach cramping and frequent trips to the bathroom and brought it up to my rheumatologist. She had me reduce my dose of Prilosec (for Acid Reflux). She mentioned that prolonged use at my dose (2x daily) can sometimes irritate the gut. After I reduced my dose to just once daily, the symptoms disappeared and I feel great now. Of couse this was just my situation but it did serve to remind myself to always run new symptoms by my doctor. There actually might be an easy way to fix it. Good luck,
  6. Hi there! I am in the middle of getting a series of IVIG infusions. So far so good. No side effects or problems and I do feel better. I have not had the miraculous remission that some have had but I do see some improvement in my joint pain, energy and a little skin improvement. The hardest part about the treatment is getting my insurance to cover it. It took almost a year for them to come back with an approval. Good luck and let me know if you have any other questions about it. HeatherT
  7. Ring Solution! My husband made an appointment for me at a Jeweler for our 4th anniversary to get my engagement ring band changed to an adjustible band. Its a band that has a hinge on it so I can get it off over my knuckle no matter how big it gets. It sort of opens up like a handcuff would...if you can picture that. The funny thing is that I can now pull it off without opening up the hinge, but who knows what tomorrow will bring. I hope this helps some of you who miss your rings!
  8. Wow! This is the reason I logged on to the forum today! I have been having pretty bad hip pain and was looking for advice on why, and what works to help it. I find that it wakes me up at night and I cannot relieve it no matter how I contort my body. This is new for me, so as of yet, I cannot give you any advice. If I come across something that helps I will let you know. Heather
  9. Thanks for all the words of encouragement! I will start on Monday for five days straight. I think it normally takes 5-6 hours but the first day it will take longer because they administer it a bit more slowly to be able to monitor my reaction. I am only approved for 3 treatments and then will have to show that its working to get approved for more. Has anyone any experience with how to prove that it is or isn't working. I'm sure they won't just accept my opinion..."but I feel so much better!" Thanks, Heather
  10. Hi everyone, I mostly visit this forum when I am feeling badly and need help. I am so happy to post some good news! I finally got approved to try IVIG and I start next week. I know it doesn't help a lot of people but I can only be hopeful. I have been waiting for about 8 months to get this approved and it didn't happen until my husband switched jobs and got a new provider. Wish me luck! I will be sure to keep you posted. Heather
  11. My doctor suggested that I try to take both of these medications together while I wait for approval for IVIG (hopefully). I have been on each separately and neither have stopped the progression. I have never heard of anyone taking both and thought I would run it by y'all and see what you know. Thanks for all your help. Heather
  12. Thanks so much for the info and all the support. I will be sure to update everyone on this process as I go through it. Heather
  13. Hi- I am about to investigate how to go about adopting a child. I know some countries will not allow you to adopt a child if one of the parents has been diagnosed with lupus. I was wondering if anyone could direct me to a resource that would have information on countries' health restrictions for international adoptions. Thanks in advance for your help! Heather
  14. So, we got the big fat denial on the IVIG treatments. I have filed an appeal but they basically said, "we cannot stop you from appealing but the decision will be no". My father-in-law has suggested contacting the drug manufacturer directly and pleading my case. I guess they sometimes provide the drug at a discount or free. Has anyone had any luck doing this? I might just have to post this question in a new, different thread. Thank all for your help. Heather
  15. Thanks for the info. I got my blood test back (looking for muscle enzymes?) and it was only slightly elevated, which he said was consistent with Scleroderma. So, I guess I am thankfully negative for any myositis right now. Thank you. Heather
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