jhjd

I've gotten "better" since my diagnosis. I live a "relatively normal" life now. There definitely are still days that I feel sorry for myself, but overall I try to appreciate life and be upbeat, knowing I'm more fortunate than many people in this world. But there are still days that I get really scared. For instance, I've got this ridiculously busy week leading up to a beach trip, and I'm just not sure how I'm going to handle things. I'm an attorney and, while my firm doesn't expect 60+ hours every week, it is accepted that it sometimes is necessary, and you're expected to handle it. So far, I've been able to do what needs to be done and then just crash for a couple of days. But every time it happens to me, I get so worried that I'm NOT going to be able to do what needs to be done, but instead just collapse one day at work or, worse, while driving home. I've already been at work for about 12 hours today, and won't leave for another hour or so. Then I need to be back here way early in the morning. Now, fortunately, I can work with a laptop, feet up, plenty of salt, water, etc. And, of course, the fact that I'm able to do it at all is a sign of my being better than I was. But it's still frustrating right now to see other people be just fine, knowing that the best case scenario involves me sleeping for 20+ hours to try to recuperate. And the worse case scenario is tripping off a full-scale attack. But when I've voiced my fears to my dr., I've been told that "there's no reason to think that will happen." But we all know that's wrong. I just don't think that the medical community sufficiently acknowledges the fear of everybody living with a chronic condition - that is, that you won't get better, but will either stagnate or slowly decline. Yes, it's good to keep hoping and searching for a cure. But what they don't seem to realize is that there's a comfort and peace in having your feelings and fears validated. In fact, that's sort of why I'm on here tonight - as I said, I'm a bit scared right now, and getting on here makes me realize that I'm not just the freak in the office who can't put in a 15 hour day! : ) So, I guess, thank you all for reading my ramblings!

I definitely catch almost everything, and it tends to be worse and linger longer. Until I hit my teens, I was almost never sick, and only seriously sick once (Strep throat in 8th grade). It started getting really bad in college, which is also when my symptoms got worse. Now, even though I've been feeling better with the POTS, I still get sick so so easily. Furthermore, I always feel worse with the POTS symptoms for several days even after I'm technically "better." I'm actually rather worried because there is confirmed swine flu both in my city and in my inlaws' city, where we just were. It's not that I'm that worried about the Flu itself - but we're supposed to go to the beach this weekend, and I would be really mad if I got sick!

Full out fainted several times and got dizzy for all my life, but it was chalked up to being overheated (the faints always occurred in warm weather), ear infection, sinus infection, or being 'just klutzy' when I fell b/c I was actually light-headed. Symptoms got worse when I was 18- told I had IBS, just wasn't taking care of myself, had problems adjusting to college life and was stressed, panic attacks, had "just a little virus" that, when I kept going back to student health b/c I couldn't regulate my temp and was tired all the time, was classifed as mono, and just generally had a weak immune system (which is true, but still...). Then, in law school, it was discovered that I had a lot of ovarian cysts- so then I had PCOS and a range of unspecificed endocrinological disorders. Finally, at age 24, went to see a WONDERFUL specialist endo who ran a full battery of tests, BELIEVED my symptoms, and said yes, you had some ovarian issues, but that's relatively normal. You shouldn't be feeling like this, and I'm sending you to an autonomic disorders specialist because I think you have POTS. Lo and behold, he was right.

One thing I would say as an employment lawyer is, when you're looking at FMLA leave, remember that you have to have worked 1250 hours in the last year to qualify...so if you take too much FMLA leave one year, you may be setting yourself up to not have worked enough the next year to qualify. Also, make sure to check and see how your employer defines "year." It can be calendar, but it may also be rolling, fiscal, etc. Instead of taking time off, have you thought about seeking reasonable accomadations under the ADA? This can include things like a later start time, or being allowed to take a nap in the middle of the day, or brighter lights, a special computer screen, etc. Ask your doctor if there's anything practical he thinks would help you. In some cases a reduction in hours may be classified as a reasonable accomadation, but it sounds like that may be iffy given your workload. Finally, if you really can't work- and you need to be honest with both yourself and your employer about this- I know this is really hard to do, but it's better to start the disability process sooner rather than later, as it takes a long time Good luck!

I'm sorry you're feeling so bad. I just wanted to say that yes it can get "better." (And I'm kind of guilty here because I was on here all the time when I was feeling really sick, and then dropped off when I started feeling better.) Of course, better is, by definition, a relative term. Our collective reality is that we are living with a chronic illness. But, for example, the fatigue has changed to tiredness, and sometimes even that goes away. You can do an awful lot of things when you're just a little tired that you can't do while you're truly fatigued, and I'm glad for the chance to do them. Sure, I flat out fell asleep at a bar the other night where I was attempting to listen to a band- apparently, at some point, I turn into a pumpkin and just physically can't go on. But before, I wouldn't have even been able to go in the first place. (Actually, it's a funny story- A waitress came over and asked if I was okay. D/H apparently said oh, yeah, she's fine and no, she hasn't had too much to drink- she's just got POTS and needs to rest for a second. You can imagine what she though he said I had. I had to wake up and explain what he meant). And, of course, I have a lot to be thankful for anyways, so I try not to complain now. Also, I'm not sure why I started to feel better. Part of it is definitely that my med combo started working well (course, as I posted before, that's a difficulty now as my toprol xl has been recalled, but that's another story). Part of it is that I've learned a lot about what I need to do to stay feeling okay and the lifestyle modifications that were hard at first have just became normal (working with my feet up, drinking enough water, vitamins, all that stuff). But some of it is just a mystery- the fact is that we still don't understand the autonomic system all that well. We don't really know why it goes 'bad' in some of us - and we don't really know why it turns 'good' again. Sure, we know some stuff that hurts and some stuff that helps, but the rest is a mystery. Bottom line though- there IS hope!

thanks ajw- yeah, I tried three different doses of atenolol over the course of a year, and it just really didn't help. It did, however, make me gain 30 lbs. Right now, in addition to the BB, I take 20 mg lexapro, Sprintec bcp, a multivitamin, a calcium + D supplement, a super B supplement, an omega-3 supplement, and a "relaxation supplement" containing valerian, evening primrose, melatonin, and some other stuff that I can't remember. I think the extra B vitamins have helped a lot with energy and the relaxation stuff has helped a lot with the tachy and the twitchiness. I wouldn't say that I'm cured or "normal" (whatever that means)- but it had gotten so much better. After speaking with my doctor, I've been told that part of the problem is that our bodies simply do not react well to change of any sort, so part of what I'm feeling isn't that the medicine isn't working per se, but that the effects of the medicine are being counteracted by the effects of the change. It also isn't helping that I'm doing this right after discontinuing almost daily pain pills for torn ligaments in my ankle from a bad fall. So I'm going to try to take her advice and give it a while longer...

I should have said that I'd also be interested in any other meds that people have found have worked for them as well as other bbs. I feel like I'm back to square 1 here with the meds...this change is really bothering.

Hi everybody! I haven't posted in quite some time- we've had some life changes (a move, new job), but I've actually been feeling about as good as I can remember feeling for literally years...until now, which is why I'm posting. Hopefully some of you will be able to help me. After playing with a few beta blockers and dosages, I was doing well on 50 mg of generic Toprol XL at night (along with Lexapro, vitamin supplements, fluids- you all know the drill). But now, as I'm sure some of you know, there's a serious toprol XL shortage (more info on why can be found at: http://blogs.wsj.com/health/2009/01/28/gen...vartis-and-kv/). Anyways, I've had trouble even finding the branded stuff, not to mention the fact that insurance doesn't want to pay for it, so the dr. switched me to 25 mg of generic Lopressor 2x a day. I've been on it since Thursday (today being Sunday), and it is simply not working well. I've been having serious peaks and valleys throughout the day. Plus, I've been once again feeling extremely out of it, exhausted, poor circulation through legs, dizzy, chest pains, heart pounding, headaches, etc. She told me to give a week, but it's just not getting any better. So, my question is: has anybody else had to switch meds and, if so, how is it affecting you? Does anybody have any suggestions as to what I could take that would maybe still be an extended release, or simply not have the up and down effect Lopressor seems to have? Thanks!

So today is a really bad day for me. Yesterday, I was up at 3:50 a.m. to get ready in time to get my niece at 5 so that her mother could be at the hospital with my f-i-l before his heart surgery. I was at work by about 6:20, worked till 5, ran errands, went to a young lawyers' thing, went with dh to visit f-i-l in the cardiac ICU (which made me very shaky because my grandmother passed away in there 2 weeks ago and, although the situations aren't the same, the atmosphere was), picked up dinner, did two craft projects for dh's Xmas party tonight (long story), and finally collapsed into bed at 11:30, where I couldn't get to sleep because of the tachycardia. I got through it on pure adredaline, caffeine, and eating McDonald's high-sodium crap for every meal (yes, i know it's bad for me, but it was good at the time). This morning, I am now really really really dizzy, tired, foggy, having serious chills and fever, and my left big toe, which of course I stubbed by running into a door two days ago, is killing me- I'm pretty sure it's getting infected because it's all red and swollen and, having already had a bout with cellulitis, I'm not eager to repeat the experience. Now, I know that I am much luckier than many, including myself a few years ago, to have been able to do all of that without quite literally falling over in the first place (yeah drugs!) And I know I was stupid to have pushed myself beyond a limit where even "normal" people would be tired. But it's so frustrating, because it's like all of it had to be done. And, for a little while yesterday, I was starting to think to myself "oh, this is fine, I feel fine, gee I'm cured." But then today hits, and reminds me that no, I'm not. Even though I've gotten better since my diagnosis, and even though I know that many people would love to have my limitations, there's still this fact that there is this finite limit to what my body can do that other people just don't seem to have. Being in a profession (corporate law) where being weak is not okay doesn't really help out either. (To get sappy for a second- this is why you guys are so great for me. It sometimes feels like the one place where not being okay and actually being myself is accepted. Plus, you all are just such awesome inspirations.) Alright, I'm going to try to go back to work now and stop feeling sorry for myself. Thanks for "listening."

I really like Kashi Heart to Heart blueberry (although I add extra berries, either dried or fresh, to it!) Sort of the same thing with your special k- higher protein then a lot of cereals, plus fiber and vitamins. Now, if they would just add back in the sodium, I'd be great. Oh, and a Diet Dr. Pepper. I cannot live without my morning Diet Dr. Pepper.

I absolutely love the substitution of gatorade for tang in the tea!!! We always called that stuff friendship tea, but whatever you call it, it's absolutely perfect this time of year! The only problem is that now the plain old Lady Grey I'm drinking (wearing my fingerless gloves, natch ) seems sort of blah in comparison! I may have to run out at lunchtime and fix some... And the pets thing is absolutely true. Whenever I don't feel good, my babies (dog and cat) always help just by curling up beside me. If only the puppy could figure out how to open the door to go potty by herself so I wouldn't have to get up, it'd be perfect. It is true though that I've learned a lot of tips from this board. And I've learned that stuff I have always done instinctively, like fidget constantly, is "normal" and has a purpose. So thank you all!

I do- it's a real, honest to goodness ottoman. Leopard print with fringe! You can't see it, since the front of my desk is closed, but it makes me happy to have it under there. Another help I've found recently: fingerless gloves from Target. Since my employer insists on keeping our office at arctic temps, they allow me to keep typing without my hands freezing and cramping up.

Chik-fil-a! I used to work in a building with one in the basement, and, besides being really yummy, the nuggets are high in sodium but not (that) high in calories or fat (comparatively to other fast foods, obviously). Whenever I was feeling bad, I'd go snag some for lunch, along with a big glass of diet lemonade (and, if being bad, waffle fries), and I'd feel much better!

Last time I flew, I had my doctor write a "To whom it may concern" letter talking about my condition and how I needed fluids, etc. I didn't end up needing it as I had a nice flight attendant who took care of me, but it was a comfort- this may be particularly true for you, since you're going to be flying in a busy season, and may be subject to delays. (Being stuck on a tarmac could really be bad for us). Good luck!

Let's see...I, too, am actually thankful for my health, because it could be a whole lot worse. Plus, I'm thankful for having health insurance that gives me access to physicians and drugs, and I'm thankful for living in this time, when such things exist. I'm thankful for my family (especially my husband), and for great friendships. I'm thankful for having all my needs and at least some of my material wants met on a daily basis. I'm thankful that I've had the opportunity to pursue my dreams, and I'm thankful for the dreams and hopes that I have for the future. Having listed all that stuff, and realizing how many people in the world don't have what I have, I suppose that the biggest thing is this: I'm thankful to God for providing all of this, even though He knows that I don't really deserve it any more than anybody else! GREAT POST!!!