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Everything posted by Lel

  1. Hi Rich, I've been searching for the poll you mentioned. Unfortunately your old posts only go back so far, and I was unsuccessful in finding it under breathing problem. Do you know any other key words that I can try in my search? Thanks. Your poll sounds super interesting.
  2. Hi Margiebee, If your and your brother ever discover tips to help with breathlessness while running, please post it. I have had my biggest episodes while at physical therapy trying to do (very) mild strength training. I also use to be a distance runner. Weirdly enough, I usually have more problems right after I run. Have you guys noticed this? If anyone could figure out a trick, that'd be awesome! My PT has recommended that I try working out in full compression hose as opposed to just knee highs. If it's a miracle worker, I'll let you know.
  3. Haha, love 10 and 13. Ramakentesh, your ventilator line is hilarious -- Puppylove, so is your AARP message. Jangle, you rock out those man-hose!
  4. I second Mydoggielovesme's advice about searching for the right doctor and also knowing that you aren't crazy! I bet almost all of us have wondered at one time or another if we are crazy. I know I sure did! (and sometimes still do) Also, if you're looking into autoimmune diseases, I recommend getting a referral for a rheumatologist. The tests they run for autoimmune diseases don't provide concrete answers. For example, positive results are indicative of lupus, but people with negative results can still have the disease. For me, my rheumatologist has helped connect the dots to my list of symptoms better than my other doctors. In fact my first cardiologist laughed when he heard my rheumy thought I had POTS. My rheumy insisted I see another cardiologist who specializes in the ANS, and thankfully she did, because I tested positive on the TTT. Rheumies are use to dealing with weird systemic things. It might help to have another doctor's viewpoint. I would recommend giving it a shot. And a gold star for keeping such organized lists! : )
  5. I have a similar problem which can get pretty severe at times. Like Alex, mine isn't 24/7. When I have a severe episode I lay still with my feet propped up like Katybug and let the episode pass (however long that takes, though I don't really have an option). For the longer lasting but less intense episodes, I can generally sleep them off. If you figure out any more tricks, definitely post them for us! Luck Tipapik : )
  6. Agreed Ramakentesh. I wonder what percentage of POTSies also have autoimmune issues.
  7. Joann, I think it's precisely the "finding our new self" part that I'm currently struggling with. Being knocked out with sickness gives you time to reflect on the "old self" figuring out which parts you should part, must part, and want to part with. I am beginning to think that the always so happy chronically ill person doesn't exist -- that he/she is a simplified version of a much more complex person. Maybe he/she is always happy in the public environment, but such a big life shift seems to inevitably require some type of internal quest for acceptance. I use to feel guilty that I wasn't part of that always so happy despite her illness crowd. So perhaps this explanation is a way for me to relinquish that guilt. But I think I ultimately, aren't we all more complex than always and never? How have you been able to explore new goals and things? Thanks for your post!
  8. I love your post. I was just having similar thoughts. I feel it's incredibly important to remember that we are real people not just diseases. I often feel like POTS (and autoimmune issues) have stolen my identity. Before I got sick, I use to run, work, and sleep. My life revolved around the two. I fought to let work not overcrowd my running. Now I no longer work and can barely workout. Who am I now? I spent years designing but can no longer put in the long hours and am unemployed. I identify with the running crowds, but I can barely participate and definitely not race. Can I still call myself a designer? A runner? I can accept that my life won't be the same, but sometimes I wonder what I have become. I am more than my disease, but how do I define myself? Perhaps it doesn't need definition; perhaps it's just our nature to categorize, so we can understand.
  9. I have extreme thirst and frequent urination but normal blood sugar. I just got the all clear from the urologist and am being sent back to my rheumatologist. Is anyone else in this boat?
  10. Well put jknh9. It is such a cycle, and when you feel like you've finally broken free, then something pulls you back in. It's hard on the self esteem too. And as for the social thing, I hear you. Sometimes I feel so different and separated from the people I'm with. It's kind of like in a panic attack, when you feel like you're watching the scene from up above. I always wonder if other people notice my anxiety and feel the separation/difference too. I'm suppose to go to an art exhibit in Cincinnati later this month with some of my best friends from college. I am so excited and so nervous. This'll be the first time that I'll be out in public without my family for an extended period of time. I'm trying to keep the what ifs at bay. I don't want to let fear dampen a fun day out with friends. ... Good post Bebe! Thanks for the encouraging and true words.
  11. Weatherman, sorry to hear of the delay... so frustrating! Let me know how it goes. Giraffe, oh man, I'm kind of nervous about the test, but maybe afterwards it'll be a good laugh. I hope!
  12. Bebe, that's a great review! Many thanks. I completely agree that questioning what we read is so important, and you can learn from that which you disagree. If you ever find anything that's a must read, let me know. Best wishes!
  13. Hmm, my PCP is suppose to be coordinating info from my various doctors, but her real function seems to be just giving me referrals to specialists. Will you let me know if internal medicine does pull all your info together? Best wishes Joann! Let me know how your visit goes.
  14. Thank you guys! Do you know of any websites or articles where I can find more info on this connection? My cardiologist believes it is not connected to my POTS. My urologist had me on a bladder-friendly diet for several months, which didn't help. So I go back to Cleveland Clinic this Thursday for a urodynamics test. I actually tend to suspect that my problem is the thirst (polydipsia), and the peeing is the result. To drink + pee or to not drink + be more symptomatic... sometimes I wish just one aspect of dysautonomia could just be clear cut! Weatherman, how did your uro appointment go? I've not heard of a bladder pacemaker before.
  15. Hi Joann, I'm not going off of any meds. I did recently go off of Midodrine, because it made me severely dizzy and flared up my other symptoms. I'm meeting with Dr. Fouad in cardiology; she specializes in syncope and the ANS. I'm also seeing Dr. Bauman in vascular medicine for my Raynaud's. And finally I'm having a urodynamic test done, because I've been having problems with excessive thirst and urination. Fun stuff! Haha. Who do see at CC?
  16. Very interesting about the shower. I'm also headed back to Cleveland Clinic soon (as in this Thursday). If you happen to going then, message me. Fingers crossed to more solutions for us both!
  17. Weathermandj, Have you tried immersing yourself in your music? When my anxiety kicks up full notch, burying myself in something about which I'm passionate is one of the best ways to chill me. I need it to get me out of my own head. Once I can escape the confines of my mind, I gradually become functional again. (I'm also on Lexapro and Cymbalta.) If you ever want to talk, feel free to message me. Sometimes just talking about something other than all our crazy health issues, helps me feel more normal and less nutty. Here's to taking things one day at a time. PS: I'm also an Ohioan. Woohoo, midwest
  18. CupCakeMomma, I just want to say that I love your outlook. You describe the situation so well. I'm still struggling with a lot of the points you mention, especially failure and self worth, but you've gotta face the clouds to find the silver linings. Keep on keepin' on! : )
  19. Hi Blue, I've been doing some research into canes (to help me with balance problems), and I've discovered that some canes are designed to fold out into chairs. Perhaps that would make the transition to standing easier. I haven't tried one, so I can't vouch for a specific type, but here's a link to several variations: Seat Canes
  20. Bebe, have you read any of Never Be Sick Again? I'd love to know your thoughts. If I could wean myself off of all these meds by adjusting my diet, that would be amazing.
  21. Could your eyes be reacting to a component of the eye liner? Since being diagnosed, I've started noticing that I have sensitivities to lots of things that never bothered me before. Good luck!
  22. What about difficulty regulating temperature, dry skin, and dry hair/hair loss?
  23. Hi all, Has anyone else experienced irregularities with urination? I have been having problems with excessive thirst and excessive urination. I'm new to the POTS world, but so far I haven't found any mention of this. My rheumatologist thinks it's a dysautonomia problem, and my cardiologist thinks it's an autoimmune problem. The urologist is yet to find anything conclusive, but I go back to Cleveland Clinic later this week for more testing. Side note: I have POTS, fibromyalgia, Raynaud's Phenomenon, undifferentiated connective tissue disease (UCTD), and lymphocytic colitis. Thanks for your input! Lel
  24. SeattleRain, I bet a lot of single, chronically-ill women would appreciate a guy who understands her situation. Keep hope!
  25. Ash, if your cardiologist isn't interested in giving you a GI referral, perhaps your primary care doctor will. In the past, this route has helped me get into a neurologist. As for my doctor's appointment, I didn't learn anything new. They pretty much took a stool sample, and now I'm waiting the results and my GI's opinion. Like before... I'll keep you posted. The medical world always seems to be such a long process. {sign} I haven't tried tracking my body's reaction fiber/fatty foods, but that's a really good idea, AZ. I eat a high fiber bread, which seems to be a trigger, so I was going to track my reaction to gluten but perhaps it's the fiber that's really affecting me. Hmm. Thanks for all the info!
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