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About Teatime

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    Texas, USA
  1. Hi everyone! I don't think I've posted since I went to England for a visit! Well, I had loads of fun and was so happy to be able to spend lots of time with my friends! It is so tough to travel but I made it and that was an accomplishment! In the past few months, my esophageal and GERD stuff has gotten worse. And, unfortunately, when I returned from England in mid-October, I found a letter from my gastro-enterologist saying that he was no longer accepting my health insurance so I had to find someone else. Not cool. It took several weeks to get in to see another GI doctor. In the meantime, my esophagus simply refused to work properly. The food and liquids sit in my esophagus until they finally come back up. It's awful. I wound up in the hospital getting rehydrated and IV meds. So, I finally see the new GI doctor and he's a dud. Really. He asks me to tell him my history and he keeps interrupting me with critical or sarcastic comments about everything my previous doctors found. When I told him I'd had a capsule endoscopy, he said he didn't believe in those things and didn't trust them. Sigh ...the dude is a seriously nasty old person. He decided that I should be taking my Crohn's steroid every day rather than just doing bursts when I have a flareup. OK, that's fine. And he increased my prilosec to help with the GERD. Last week, I had to go in for an endoscopy and esophageal dilation and as the dude is injecting the sleepy drugs into my IV, he's telling me that he looked at my capsule endoscopy film and found it "unremarkable." I fell asleep before I could ask him what that meant. My son said he told him that my lower esophagus had narrowed and he dilated it. That was all he said. My son thought he was a dud, too. I don't know what I'm going to do. I hate this guy and I need a good GI doctor. I wish my previous doctor didn't stop taking my insurance. I had two doctors tell me I have Crohn's Disease and now this guy is disputing it, or is he just being a pain? I don't know. I don't want to go back to him but I don't think I have a choice. Once you see one of the doctors in the practice, it's difficult to switch and see a different one, even though there are four others in that office. Anyhoo, he said he thinks the esophageal stuff is sclero-related so the dilation may or may not be of much benefit. My rheumatologist agreed that it sounds like sclero manifestations. I was in a vicious cycle of throwing up my meds and then having things flare up because I wasn't getting my meds properly. Fingers crossed, the dilation seems to have helped some. I'll take any help, at this point! Julie
  2. Happy holidays! I hope everyone enjoys good food, pleasant company, and a break from their symptoms!
  3. Miocean, i wondered the same thing -- which of my health issues was the reason I was granted disability. I have so much systemic involvement! It turns out, that's in the code, too. There is a bunch of numbers and they all mean something. Somewhere in there is the code for the disabling condition. Mine turned out to be inflammatory arthritis. And that was a quandary for me. I had a bunch of doctor's appointments and hospital visits and I didn't know if I should only list the ones relating to arthritis or just keep it chronological. (At the time, I was being treated for atrial fibrillation and had just undergone a cardiac ablation.) I decided to simply list the last 3 visits/hospitalizations even though they were cardiac and gastro-intestinal. Maybe one was orthopedic, I can't remember. I guess that was OK! All best, Julie
  4. Hi Sweet, I just heard from them this year, 6 years after I started receiving benefits. It was a very simple form -- maybe 6 questions. It asked for the date and reason for my last 3 or 4 doctor visits and my last 3 or 4 hospitalizations, if any. Then it asked if I am working, whether my health is better, worse, or the same, and if I'd discussed my status with my doctor. That was it! If you get this type of form, just give them what they ask for and don't send them a bunch of documentation unless they request it. That's not what they want. This is the short form and, from what I've read, it's just a formality. They are merely wanting to know if you're working, if you're being treated and seeing your doctors as you should, and if you've improved a lot. There is a long form that they send to people who, they believe, might have a greater chance of being able to work someday. That requires more questions and documentation but the odds are still good that benefits will continue. You fill out the short form, send it back, and receive a letter in a few months stating that they don't feel the need to review your case and they will contact you in the future if they need some information. I wish I had the website -- I will look for it if anyone is interested -- but there is a whole description of what the little numbers on the bar code of your letter mean. You can actually see how Social Security has rated your chances, in their estimation, of being able to work in the future. Interesting stuff -- mine was quite low, something like 12 percent. And that's how they base how often and what type of review form you get. But until you a query from them, it doesn't matter anyway, lol. Dealing with the government is still stressful at any time! All best, Julie
  5. I think I'm using that very same brand!!! Fancy it shrinking undies in both the UK and the US!!! I wonder where else it's making mischief?! :) Seriously, though, I've bought some "boy shorts" undies, as they're called here, and I hope the switch helps!Julia
  6. I'm afraid I have no clue at what level I feel the best because they've only put me on a tiny dosage of thyroid replacement (0.50 mcg) and I've never been given my test results except once when my cardiologist found the TSH was high incidentally. My new rheumatologist gave me my results today, though. It was 4.399 on a scale by which .3-3.55 is "normal." I'm so tired of being flat-out knackered. I'm sure that disease process is part of it and I have cut down on my exercise but I'm still terribly tired. I think that treating the hypothyroidism better would make a difference! Julia
  7. Hi everyone! I'm so sorry that I've been quiet. Fatigue has been a big problem and I've been reading here a lot but not posting! As a continuation from my previous post, I still don't have the thyroid problem resolved. I am SO appreciative of the great advice and insights there! They've proven very valuable in my understanding of what's going on! I saw my new rheumatologist again today and I do like her. My tests came back looking pretty good and she's not changing out my immunosuppressants but she is ordering some studies to see what's going on. She wants EMGs done of my wrists/hands and lower legs/feet. I've had a lot of problems straightening out my hands plus nerve pain and numbness in my hands and feet. She also sent me to the hospital to get hand splints. She asked me if my general practitioner took care of the thyroid problem. Nope! I'm not sure she has even seen the results! My rheumatologist. faxed them to her but there's been an upheaval in my general practitioner's office and her nurse was moved. I have called the office three times in the past two weeks, spoke with three different nurses who said they'd handle it and nothing has been done, grr. Oh, but they did tell her about my fatigue so she ordered sleep studies! Um, wouldn't it make more sense to address the high TSH result first? Anyhoo ... My TSH came back at 4.399. That's higher than it was when the hypothyroidism was just emerging and I wasn't being treated. I know it's not horribly high but the fact that I struggle with fatigue, I've gained weight around my abdomen, I'm always cold, my nails are falling apart and my skin is dry means that it needs to be treated better. I'm only on a dose of .50 mcg of levothyroxin and that's tiny. I'm flying to London on Tuesday and I'll be gone for nearly a month. I wish they'd address the thyroid issue before I leave! I'd really like to feel at least a little bit better for my trip! Best regards to all! Julia
  8. LOL, this has turned into a fun conversation! I'm familiar with the term "knickers" because of my English friends. When they came to visit, Nicky was afraid she didn't pack enough underwear so we went to a store to buy some. She really liked a particular brand so the next time I went to England and asked if I could bring her anything, she said the "little knickers with the strappy bits." LOL Anyhoo, the "French knickers" sound like just the thing! I'm actually wearing small pajama shorts now and they're so comfortable but they're too thick to wear underneath clothes, especially the light, thin clothes I wear in our Texas heat. I just might wait until I come to England and Europe and buy them there. They might be less expensive than here if they're popular.
  9. Does anyone else have a problem with rashes from underwear? My skin has become increasingly sensitive and doesn't handle anything like latex or nylon well at all. A number of years ago, I started to break out in horrible circular red rashes when I moved to a warmer climate and my doctor told me to avoid nylon stockings and wear only cotton underwear. That's served me well until now. I have a bumpy rash all around where the leg hole elastic touches my skin. I put medicated powder on it but it sometimes hurts a bit. I'm not sure what to do about this -- I need to wear underwear, lol ! I guess I need to start seeing a dermatologist. My new rheumatologist was surprised I don't have one but the one I was sent to was awful. In fact, I never even met him! His nurse practitioner did all of the medical stuff because he wanted to focus on cosmetic procedures! She even did my skin biopsies! Anyhow, maybe I need to find a good one who knows something about autoimmune diseases.
  10. Your dogs are adorable, Jo! I love your horse Dolly, too! I'll have to look at more pictures when I have more time! I know that once I start looking, I won't be able to tear myself away for a while. I did manage to post pics of Bobby and Morgaine. Took me about an hour to figure out how to do it! I'm techno-challenged, sigh.
  11. Teatime

    Miss Morgaine!

    This is my Weimaraner, Miss Morgaine Le Fay! She refused to look at the camera! Neither of my dogs likes to be photographed. Come to that, I don't, either, hahahaha! My passport photo is the absolute pits.
  12. This is my silky terrier, Bobby. I was following him around the house trying to take his picture and he wasn't thrilled, hahahaha. You can tell by the expression on his face!
  13. Indeed! I used that technique with my son when he was little. He wouldn't touch vegetables to save his life so I chopped them up very small and told him they were "spices and herbs." ;) I hope you can find the cultured coconut milk. It's so much lighter and tastier than yogurt but it has the beneficial cultures, too. I use it for a lot of things. I made some rice pudding tonight and mixed in some cultured coconut milk in place of some of the regular milk. Very yummy!
  14. Hahahahahaha! But I'll bet your husband wouldn't object to some petting regardless! Morgaine, my Weimaraner, surprised me this evening. I had some parsnip and carrot mash left over from dinner so I put some in each of their bowls. Bobby, my silky terrier, gobbled it right up as I knew he would but Morgaine was hooked after the first taste, too, lol. I think she licked her chops for about an hour afterward! What are your doggies' names?
  15. OK, I guess I cheered too soon. I just spoke with my internist's medical assistant and she said the TSH isn't elevated very much and she wasn't going to do anything about it except check it again in 3 months. So, it appears that I'm back at square one and we need to find out what's causing this horrible fatigue. The medical assistant is going to talk with my internist and call me back. I am wondering if I should just call the rheumatologist's office.
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