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Teatime

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  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. A Happy Holidays

    Happy holidays! I hope everyone enjoys good food, pleasant company, and a break from their symptoms!
  3. Disability Review

    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. Disability Review

    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. Underwear!

    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.
  6. 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
  7. And that explains at least part of my fatigue and weight issues! We finally got a rheumatology practice in my town and my internal medicine doctor made sure I was seen right after they opened. I am cautiously optimistic about the rheumatologist I saw. She actually examined me! That probably sounds like a no-brainer but the last two didn't examine me. They just looked briefly at the forms I filled out and ordered tests/wrote prescriptions. The new rheumatologist ordered a lot of tests, too, but she told me they're only one part of the equation. She says symptoms, exam, and medical history are equally important. Yay! So, the lab results must be coming in. They took 10 large vials of blood last Wednesday and then the hospital called me on Friday to say they had to do more tests and needed more blood! I'm guessing that Wednesday's batch is showing up now. The new rheumatologist's nurse called me this morning to tell me that my TSH (thyroid stimulating hormone) is high and my Vitamin D is low. Still. I'm taking 50,000 I.u.s of D and trying to get a bit of unprotected sun exposure every day. I've also increased my consumption of yogurt. Not good enough, I guess. But the great news is that my levothyroxine apparently needs to be increased. I have been so, so tired lately and gained more than 10 pounds that I've been unable to lose. I discussed it with my internist two weeks ago and we decided to tweak my neurontin dosage to see if that helped the fatigue. It didn't. And I have been so frustrated by the weight gain. I eat really healthy meals and small portions and I exercise just about every day. Nothing has worked. Now I know why! I'm really happy. It's such an easy fix that will make a tangible difference. I'll take any improvement I can get!
  8. Underwear!

    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
  9. Hurrah, my thyroid is wonky!

    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
  10. Underwear!

    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.
  11. 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.
  12. 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.
  13. My best boo, Bobby!

    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!
  14. Any foodies here?

    My first rheumatologist was incredibly versatile. He was a medical doctor, of course, but he was also a certified naturopathic practitioner and he had a degree in public health from Harvard, too! So while he used conventional tests and treatments, he also encouraged his patients to eat healthy foods and take care with their diets. Great doctor, and I was sorry to have to leave his care when I moved. But I continued to explore good nutrition and pay attention to what was in the food I bought and where it came from. A natural grocer moved into town so I buy organic produce and products when possible. I've given up "fizzy drinks" and make my own blends of herbal cold teas to drink. I cook from scratch and love to try different herbs and spices and to make my own healthy sauces! Is anyone else here a foodie and/or interested in discussing food and recipes? Here's a sauce I concocted as a healthier alternative to mayonnaise and tartar sauce for seafood. It's wonderful with fish, as a condiment on sandwiches (especially turkey!) and can be used as a lovely salad dressing, too. Keep it chunky and it's a marvelous salsa or chutney for poultry and fish. I hope you enjoy it! Julie's Creamy Avocado Sauce 1 cup of plain cultured coconut milk (found in the dairy section of the grocers, near the yogurt) 1 medium avocado, pitted and skinned 1/2 cup of organic canned diced tomatoes with mild chilis. If you can't find the canned version, you can also just chop up your favorite tomato and finely chop half of a mild (or medium, if you prefer) green chili pepper. I use canned when I am in a hurry and fresh when I don't mind chopping, lol. Anaheim, serrano and poblano peppers are the best! I think jalapenos can be too overpowering and habaneros are crazy-hot! A squeeze of fresh lemon A half-teaspoon of powdered or grated fresh ginger, and a half-teaspoon of cumin, ground coriander seed, and finely chopped garlic or minced garlic from a jar. In a small bowl, mash up the avocado with a fork and mix in the cultured coconut milk. Stir in the tomatoes/chilis and spices. Squeeze some lemon juice into the mixture and add salt to taste. (Just a dash works for me, if I use any at all!) Pour the mixture into a small personal food processor with a chopping blade and use it to blend all of the veggies and flavors well. How long you let it whir is a matter of taste and depends on your intended use. You can keep it somewhat chunky and serve it as a sort of chutney or salsa with poultry or seafood; you can blend it smooth and use it as a salad dressing or condiment. I usually process it for 30 seconds or a bit less so that it's smooth but also has some distinct veggie bits. I use a multi-blender that has different sized cups that double as storage containers so once it's been processed, I just remove the cup from the cutting disk and screw on the lid. If you are using a traditional blender or small food processor, simply put the sauce into a storage container. You can eat the sauce right away or refrigerate for at least 30 minutes if you want to serve it cold. The sauce will keep for a couple of days in the refrigerator.
  15. Any foodies here?

    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!
  16. 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?
  17. Hurrah, my thyroid is wonky!

    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.
  18. Any foodies here?

    Jo, I was wondering how ingredients might translate to other countries! I'll bet y'all have even better peppers available from the Mediterranean! Do you get avocados? Although I much prefer cultured coconut milk, plain yogurt would work, I think. Organic, fire-roasted tinned tomatoes are really quite good. Many brands offer them diced with green chilis. I checked my cupboard and the cans don't say what type of peppers are used but it's probably one that I mentioned. I hope you can find the ingredients and give it a try! Served with a mild grilled whitefish like flounder or haddock, it's heaven on a plate, IMO! All best, Julie
  19. Someone once told me that either you're a cook or a baker; few people are excellent at both. I think there's a lot of truth to that. I'm a cook. I don't do very well with baking which is probably a good thing because I love pastries! Most of the time I'm too lazy to go out and buy some so that keeps my weight down! I only have one baked specialty that I make around the holidays -- lemon cream scones. I'll whip up a batch for breakfast holiday morning and I like to make them to put in tea baskets as gifts with some exotic teas and blackcurrant preserves. (Haha, I chose my nickname here for good reason! I love tea!) Because my hands are weak and I struggle with cookie sheets and pans, I bought some silicone ovenware. Wow, it's really good stuff! I found the initial "plastic" smell to be rather odd but it was all good after that. Everything bakes faster and browns evenly on silicone and it's lighter to lift and handle! Cleanup is super-easy, too! I have silicone baking sheets, cupcake/muffin pans, and a loaf pan. The cool thing about the silicone baking sheets is that they double as pastry mats so I use them to roll out dough, too, and cut homemade pasta. Amanda is so right -- a food processor is essential. I have a couple of them in different sizes that I've collected over the years! A good set of sharp knives is important, too. Good knives can make tasks way easier! Because I live in the Southwestern US, I have a few other appliance "musts" -- a slow cooker, a roaster oven, and a good barbecue grill. It gets SO hot here and our hot season seems to be starting earlier and continuing later. I won't use the oven if I can help it from April through September and I don't like to stand over a hot stove, either. I have a large crockpot in which I can slow cook poultry or roasts. (Lots of folks like them for soups, too. Personally, I don't because I add dumplings or pasta to my soups and those get sticky in a slow cooker.) Roaster ovens are fantastic for doing large turkeys, hams or roasts in a fraction of the time an oven takes. And I love to fire up the barbecue to grill or smoke foods. I can only do that, though, when someone is here to load it up with charcoal and wood for me. I don't fancy gas grills and I could never handle big jugs of propane, anyway! Jo, I always have a dog or two underfoot, as well! They know I'm clumsy and will drop something tasty at some point! On bad days, they've gotten half a platter's worth of foodies! My Weimaraner doesn't like vegetables but she's learning to like fruit. My silky terrier likes just about everything. He's my veggie eater and he's nuts about cantaloupe!
  20. Still here...

    Hi Sweet! I'm a newcomer and glad to meet you. I've been on the autoimmune carousel with sclero added to the mix recently, even though the SCL-70 test came back positive a couple of times about 7 years ago. I'm having a bad time with the gastro-intestinal manifestations and neuropathy in my fingers and toes. I've had Raynaud's for a number of years and my hands are terribly swollen. I find it so encouraging to encounter people who are doing well so I'm glad you are!
  21. Hurrah, my thyroid is wonky!

    I could have sworn that I posted earlier today. Well, no matter. Now I can respond to Amanda, too! :) Thank you, Jo! I don't want to get my hopes up too high because time will tell on the new rheumatologist but I am pleased thus far. I think that the hospital may have been more careful with whom they hired this time because the last rheumatologist was such a disaster. I am eager to start the levothyroxine increase with hopes of improvement. Shelley, thank you for the info on Hashimoto's. I wasn't aware that there was an antibody involved! Perhaps that's why I had to have more blood drawn on Friday. Since the TSH was high, she may have wanted to check some more things. I wasn't aware that weight gain is a side effect with Neurontin! We really can't win, can we? :( I am glad for at least something that may combat this awful fatigue. It's been so bad that I've had to have my son drive me places at times because I will nod off sitting up, even while driving! Scary bad fatigue. Amanda, My arm really was sore after all of that. The blood was flowing very, very slowly by the time the technician got to the last two vials! When they called me back in on Friday, I had hoped they would stick the other arm but nope! They set me up in a chair that had the folding arm rest on the right, grrr. It did hurt when she stuck me and she apologised. She said she could see the hole in my vein where they got me just two days prior and she tried to avoid the same spot but her aim slipped. Oh, well. Neurontin really is magic, isn't it? I have nerve pain in my fingers/knuckle area and toes/top of my feet. My feet are the worst. Just lightly touching the skin set off horrible bursts of pain and I could only wear the softest slippers around the house and barely the cloth sandals outside. The neurontin has helped. We're still tweaking the dosage to find the right balance between adequate pain relief and minimal side effects. Now that I know at least some of the fatigue and weight gain is thyroid-related, I'll be able to resume a higher daytime dosage of neurontin. My internist wants me to take 3 doses per day to always have some in my system but we saved the highest dose for nighttime. How often and how much do you take? I'm glad you're filling out your dresses beautifully! I have gained a bit in the bust but I've really noticed it around my hips and even a bit in my lower abdomen! I do 45 minutes on my recumbent bike at least 4 days a week plus yoga and exercise with hand weights on the same and other days. I shouldn't have bulges on my hips! I really hope they go away! All best, Julia
  22. Hurrah, my thyroid is wonky!

    Thank you, Jo! I will see the rheumatologist again before I hop across the pond. We will discuss the test results and plan at that time, presumably, but I doubt there will be time to start anything new. I would be delighted to have more energy for my trip, though, and will gladly take any improvement! Shelley, wow, no one has ever mentioned a hormone related to this! My mum had thyroid problems and took thyroid replacement. I thinks it was Hashimoto's. I will definitely look into this. It's possible that one of the reasons I had to go back to the lab on Friday and have more blood drawn is she wanted to run more tests when she saw the rise in my TSH. I didn't know that Neurontin causes weight gain. Lovely. :( Thank you for the good information, though! :)
  23. Amanda, Our system here in the US is just nuts. Health care here is big business. The hospitals care, I would imagine, about promoting healthy lifestyles but for the insurance companies and for-profit health services, it's all about finding new ways to make more money through surcharges and higher premiums (or not covering medical care). The government sued the tobacco companies and the states were awarded billions of dollars that the companies had to pay for fudging the truth about the effects of nicotine. The money was supposed to be used for smoking cessation programs, medical care, and education programs. Instead, the states used some of it to balance their budgets and pay for other stuff. I wasn't offered any assistance when I quit smoking. I paid for an electronic cigarette kit and supplies on my own and weaned down to 0 nicotine on that, too. I think that people need to make what lifestyle changes they can make, though. The time is fast approaching when the insurance companies won't cover anything unless you do. As I said, I don't know what I'll do if they radically enforce the BMI. I eat super-healthy and exercise just about every day, if possible. I would have to go on a starvation-type diet to lose the 25 pounds I'd have to lose to get the BMI in normal range and much of that would be muscle.
  24. I was a long-time smoker so I understand the addiction. And when I finally quit and didn't feel one bit better (despite what my doctors promised) AND I gained 20 pounds, too, I wasn't thrilled, to say the least! What kept and keeps me off the ciggies, then, is the cost savings. I enjoy having the extra money to spend on better things and I also like not having my person, home, and car smell like stale smoke. More importantly, however, is that the time is coming when smokers won't get the treatment they need. Doctors and hospitals will refuse to invest time, money, and care on those who smoke and, also, on the obese. I know this sounds harsh but it's already happening in some places. When I had my cardiac ablation earlier this year, my cardiologist said I was considered a prime candidate and they would book the procedure right away because I eat well and exercise, I don't smoke, I'm young enough, and I'm compliant with my medical care. He said the hospital has patient criteria in place and this particular hospital won't hire anyone who smokes or is obese, either. Some of our local orthopedic surgeons have a weight limit for performing surgeries! I have a very large friend who told me she was embarrassed to learn she just barely made the weight limit for arthroscopic knee surgery! I have repeatedly invited her to come over to my house and exercise with me since she's ashamed to go to a gym but she's never shown up. The hospital is going to start charging their employees who are heavy or smoke more each month for their insurance premiums. We're heading for healthcare rationing and widespread policies like this here in the U.S. I think that people like this gentleman need to consider what they're going to do and what their decisions will mean to their families. I'm a bit worried myself because if penalties are incurred solely based on the BMI, then I could be in trouble. I'm larger-framed and muscular so I weigh more than the ideal for my height. I could be characterized as substantially overweight even though my stomach is flat and there isn't any flab on me! I'm so glad you had a wonderful trip and a renewed sense of freedom! Enjoy! Julia
  25. I'm afraid elements of this post may be a bit gross so my apologies ahead of time! I had an alarming episode today and was wondering if anyone else has had something similar happen and, if so, what one can do! At this point, I'm afraid to eat anything that isn't really soft! It's been horrifically hot in my part of Texas -- we've been at 106 degrees for several days now. I've been keeping my food intake light so I was eating a small salad and a piece of cold chicken for supper. All of a sudden, the food I had swallowed wouldn't go down. I've had many attacks like this before and know to just keep calm, relax, breathe deeply and slowly and, eventually, the food will go down, even if it does hurt. This time, however, the esophageal spasms were weak and seemed to be sending the food up, not down. Saliva started coming up and then a little bit of food. About 3 minutes of this went by and then all of the food I had eaten suddenly came up. It wasn't like vomiting, though. There weren't terrible stomach contractions or stomach acid or any digested food. It was just the food I had recently chewed and swallowed, as if it was trapped in my esophagus and maybe the very top of my stomach. And while this was going on, I lost bladder control, too. :( Needless to say, this was a rather scary experience. I didn't know what to do during or after. My gastroenterologist gave me a medication called Hyomax (hyoscyamine) to take when I'm having an attack but by the time I located the container, the food was coming up and I really couldn't take a pill. This attack happened 5 hours ago and my esophagus still hurts and I feel sore. I want to eat but I don't know what my system will handle. Luckily, I already had a scheduled visit with my gastroenterologist set for Monday so I just have to get through the weekend. Any suggestions, though? Thanks! Julie
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