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Attorney- with a blanket around me and an ottoman under my desk to keep my feet up (this part is CRUCIAL!). I was with the state, which was much better for me than private practice is proving to be. We had some VERY stressful times where I worked, and, I almost always worked 40+ hours a week. But it still wasn't as many hours as in private practice, and I had much better insurance and leave (though you do make more money in PP). Plus, I could take advantage of natural down time easier- in PP, when you have downtime, you're supposed to go find more work to do and clients to bill. I loved my job, and would still be there if it weren't for the fact that we had to move to a different part of the state! Since everybody's talking about grad school, I have to say that law school was probably the best "job" because of the flexibilty in my schedule (at least after first year) and the fact that I could study on the couch in my p.j.'s. In some ways, I think that we can really do better at a lot of academic/intellectual (i.e. non-physical) pursuits than a lot of "normal" people because having this sort of condition forces you to become much more self-aware and realistic about your abilities and what you need to do to meet your goals. Plus, if you've ever had to struggle just to get out of bed in the morning and get dressed the way we sometimes do, then you know that reading a couple of chapters, particularly on a good day, is nothing to complain about! So, when at graduation, I was receiving my degree summa cum laude, my friends that I used to be jealous of for their ability to go out and function on just a few hours' sleep were like, "hmm...so that's what you were doing all those times that you weren't at the bar with us!" good luck!

So I'm not sure what made me snap yesterday, but I started reading this article from Eating Well magazine on how everybody should lower their salt intake and it just made me mad! I believe that this sort of absolutist "conventional wisdom" really contributes to the ignorance that all people with chronic conditions resulting in so-called 'non-traditional' lifestyle changes face. Plus, you know that there are people out there right now, feeling horrible because of their dysautonomia, who can't get a diagnosis, and are following this advice because they're constantly told to do so by experts. Anyway, I thought I'd share the article and the letter I wrote to the editors in response with you all. http://www.eatingwell.com/health/health_di...alt_health.html And my response... Dear Editors: In an article entitled "Is Salt the Next Health Focus?," which was published on MSN.com under the more dramatic title "Is Salt the New Trans Fats?," you assert that the "bottom line" is that everybody should watch their sodium intake "now" for "big health payoffs later." Unfortunately, if I- and millions of others- followed your advice, I would suffer drastic health consequences from the effects of low blood pressure and volume. Furthermore, even those who do need to be concerned about their salt intake must remember that it is still a major, much-needed nutrient, and that a sodium deficiency can cause serious illness or death. While research such as that discussed in the article is certainly enlightening, such articles need to be ended with a reminder that, instead of essentially self-medicating for a condition that may not even exist, everybody should have their blood pressure regularly checked, and consult their doctor before making major shifts in diet or exercise.

Basically anything that causes additional stress to your body- certainly a car crash counts!- can cause an episode. I defintely did notice this the last time I was rear-ended- also, every time I get a cold, lose sleep, or whatever else.

Do you have any cuts on your hands? I ask because a couple of weeks ago (as I posted), I was diagnosed with cellulitis in my foot, and the first thing that happened beyond just me getting cut was that the joint on my right big toe became swollen, red, painful, and warm- it was so swollen that I couldn't even move it! While the cut itself (on the tip of my toe) was clearly icky, the cellulitis, which moved into my foot, was way worse- partially because I didn't go to the doctor soon enough because I thought I'd just sprained/broken my toe. By that time, I was having fevers, chills, nausea, plummeting blood pressures and escalating heart rates, etc. After toe surgery/debridement, two weeks on two different antibiotics plus an antibiotic shot, it's finally getting better. The moral of my story is this: go to the doctor now! And good luck!

I occasionally wake up in the middle of the night incredibly nauseous, shaky, and either way too hot or too cold. Most of the time I'll end up being sick and sitting up shivering or sweating (or both) for a while watching TV. Then I go back to bed, and am okay by noon the next day. It is likely to occur on nights when I've been out, especially if I had a beer and/or ate too rich of food and/or was out in too smoky/loud/crowded a place. But it also happens on nights when I've done nothing strenous at all, and had felt fine all day. I just chalk it up to an autonomic blip.

Yep. Got an antibiotics shot, and have been on them for a week- first Cipro, and now Levaquin. Sorry- should have made it clear that I had already called doctor, reminding her of the fact that I've got dysautonomia and MVP (and therefore greater infection risk)- no response as of yet. Depending on how I feel in a few hours, if I haven't heard back from her, I may go to the ER. That's what she said to do if I had serious symptoms anyway. I guess I'm just wondering what constitutes 'serious,' which I know noone can tell me online! Meanwhile, I'll just keep typing away with my feet propped up in an office chair- luckily I have no client conferences today! (Cause, c'mon- you want a lawyer who has to practically lie down?)

Fidgeting is my only real cure- I have found though that sleeping with several pillows helps- I sleep on my side, with one under my head, one between my arms and supporting my upper body, and one between my knees. It seems like when my extremeties drop downward, it gets worse.

This is a quasi-follow up to my darvocet post (interesting replies on that, btw- actually kind of makes sense, when you think of us as 'upside down' people, as has been mentioned before, that we'd function better on some dose of a c/s). Anyway, it turns out that I don't have just an infected toe- I have cellulitis in my foot, which I think may be spreading up my leg. They took off a lot of my toenail and removed a lot of diseased tissue from underneath, and the immediate problem is getting better, but the cellulitis isn't. My problem is that the major sign is pain (which I have in spades), swelling, and redness. Now, I always have redness and often have mild swelling in my legs because my blood pools! Plus, 'warmth,' another common sign, for my constantly cold extremeties feels like normal or even cool skin for a lot of people. So I'm caught between wanting to be careful, not wanting to overreact, and reaallly just wanting to get through this day at work like a normal person. Has anybody else had this? What have your experiences been? Thanks!

I've been prescribed darvocet, along with antibiotics, because I have a grossly infected toe (when I say gross, I mean it both ways- the X-Ray tech looked at it and said 'oh, eww, eww') that is extremly painful. (My dog stepped on an already hurt toe, piercing it with her nail, and whatever bacteria was on her nail got into my tissues. It's a stupid injury) ANYWAY, I've noticed that I'm actually feeling pretty good on the Darvocet. I'm a little more out of it feeling then normal, but I haven't had any tachy episodes (knock on wood), and I haven't felt like I was going to faint. I am lazy feeling, but not fatigued- which is a difference you can only appreciate if, like us, you know how different true fatigue is qualitatively and quanitatively from being merely tired. What are other people's reactions to controlled substances like this? I've been nervous about taking any sort of C/S, even though my MD has offered various ones (Klonipin, painkillers for the aches, etc.), but now I'm rethinking. What do you all think? Thanks!

yep. female. Sorority girl. And my sorority's (Phi Mu) color was pink. I even played Miss Delta Nu at one point in a rush skit. I LOVE that movie!

yeah yeah...how's this one- I'm a BLOND lawyer. From Alabama. I'm a walking (well, since I've got dysautonomia, the walking can be iffy from time to time) stand-up comedy routine. One thing I did want to add though: how much you choose to tell a new employer about your disability is up to you. Of course, as a practical matter, you want to reveal some of it because you want to make sure you can do the job, and that they will be understanding. But there are some lines in the interview that employers cannot cross in questioning you about your health status.

Required fine print (cause, well, I'm a lawyer): This post is for informational purposes only, and should not be taken as legal advice. No attorney-client relationship is hereby formed. I am so sorry that this happened to you. I don't want to sound cruel, but I'd hate for you to count on the legal system or EEOC (both of which are very backlogged) to get you your job back. It sounds like, from your very brief description, that you probably have been adjudged to be unable to perform your essential job functions, even with reasonable accomadations. The best, non-legalese way to describe the reasonable accomadation standard is that employers are required to go after the low-hanging fruit of accessibility: if there's some relatively simple change that can be made in scheduling or protocols without affecting anybody else, or if there's an easily obtainable piece of equipment that doesn't cost a lot more then a similiar non-accessible piece of equipment , then they should make the accomadation. But if something is too costly, or is going to require some sort of corporate change that will affect others, then they don't have to do it. And they don't have to give you another job if there's not one available for which you are qualified. Furthermore, they can require a release stating that you can do the essential job functions before reemploying you. Now, it may still be worth checking into your state regs- some states give you more rights then those federally available. As I said, I don't want to be cruel, and I'm not saying you don't have some remedies available. But I've represented mainly employers, and I've won more than I've lost on these kinds of cases. The reason I'm posting this sort of 'downer' message is because I have seen too many opposing parties wear themselves and their families out fighting for a job that they can't do and don't even like- I'd hate to see you fall into the same trap. God Bless.

So I haven't been on here in a while, though I probably have needed to be. I've just been so busy- we're moving to a new city, so we have to sell the house, find new jobs, etc. My question is this: They increased my atenenol dosage b/c it wasn't doing enough to stop the tachy and chest pain, in particuliar, and I was just generally still having a lot of symptoms. Ever since then, I've been getting more tired and dizzier and having really really bad muscle pain at night...if I stop moving and it takes me more then 5 minutes to get to sleep, I'll start to cry from the pain. Same thing if I have to be still in a meeting or whatever. Then, when I wake up in the morning, I'll find that I've a) thrashed around all night but my feet and hands will still be 'asleep' and c) everything else will ache. The assessment has been that the increased dose is lowering my blood pressure to the point that the pooling has gotten much worse, so my doctor switched me to Toprol. She says if this doesn't work, we'll have to move from beta blockers to other classes of drugs or some combination thereof- possibly Klonipin. I My question is: Does anybody here take Klonipin? What does it do for you? Do you take it in combination with the Beta Blockers? Anybody else have any other good med ideas? Thanks!

I don't know what state you're in, but I'm sure that they have rules and/or policies and procedures governing conscious sedation. These should be accessible online or by calling your Doctor's office or the hospital. It might make you feel better to see how closely you'll be monitored. For example, a lot of states require, and many hospitals insist, on having continous EKGs during C/S. If you're feeling anxious, talk to your doctor- it's always good to be an informed consumer! But rest assured that a nurse is generally considered well within the standard of practice and, while I know it's an icky, unpleasant, and somewhat scary procedure, you should be just fine. Good Luck!

Method- one of Target's brands- has a no-dye, no-perfume cleaner that works pretty well. It doesn't sterilize like bleach, but it gets the dirt off and that's what you need most of the time. I also recommend 7th Generation cleaners- no dye, no-perfume dishwashing detergent (plus it's better for the earth!)

Bless your heart! That's terrible. *not legal advice* Both the doctor and the hospital are responsible here- neither should abandon you, which is what it sounds like happened. I totally understand about the fact that a civil case would take time and energy and, frankly, may not be very successful. BUT let me suggest to you that you do a few things that may actually go a longer way to solving the problem and not take up so much of your time, though still a bit intensive. Gather all the information that you can- get your charts to show you weren't recieving treatment, do an affadavit (just a written, signed, notarized statement- you can write it and take it to your bank to get it notarized) of your story and have your husband and any other witnesses do the same, and get any other information you can think of- bills, communication, etc. Put it in an organized binder and send it to your state's board of examiners, department of public health (or whoever licenses hospitals in your state), and the hospital's accrediting agency, and the hospital. Request a review of the dr's license, the hospital's license, and the hospital's accreditation. You won't have to get a lawyer and, while you may be asked some questions, it'll be less formal and an easier process for you- plus, quite frankly, those things are worth more to them then a civil judgment anyways.

**Not legal advice.** You may very well no longer be dealing with the bank, but with a collection agency who has bought your loan. A few things to watch for: 1) Know your rights as a consumer. They cannot unduly harrass you. See the FTC's website on fair debt collection- http://www.ftc.gov/bcp/conline/pubs/credit/fdc.htm. 2) Know your rights in court. First, they have the burden of proving that you do in fact owe the debt, though they may try to make you feel as if you have to prove otherwise. Second, there may be legal defenses, such as statute of limitations, that can protect you if the debt is old. Third, read your contract! There may be some clauses in there you can take advantage of. Fourth, Bring all your documentation to court, and make sure it's organized and neatly labeled. You'll want an index with tabs that a judge can flip directly to. Unfortunately, even being sick, unless there is something in the contract to the effect of a hardship clause, you may still be liable for the amount of the debt plus attorney's fees and costs for the collection of it. Sometimes that's just all there is to it, legally. You may want to consider a pr campaign- especially if it's a primarily local/regional bank, they may not want the bad publicity of suing the sick woman. Good Luck!

*still not legal advice* Most of what you want to do really has to depend on your goal. If you're close to graduating and just want to get out of it, then my best 'advice' is to just try to get through it. Sometimes you may be able to request an advocate go with you to the IEP meeting, even if they won't sue on your behalf (this is actually where most of my special education experience lies). But you should know that you have the right to a transition plan so that your 504/IEP should not only help you graduate, but should also help you go onto whatever you want to do (within reason of course). Taking legal action, even at this late stage, or switching schools may therefore be worth it. Again, keep calling your advocacy agency with specific questions. Good luck!

DYNAkids is a great resource. *Here's my mandatory professional disclaimer: NOT LEGAL ADVICE (don't you just love lawyers?)* Having had some experience with special education law, I can tell you that this is not okay. My advice if they're giving you problems is to contact your states' disability advocacy program. For example, Alabama's program- ADAP- is run out of the University in Tuscaloosa. They should be able to give you advice specific to your situation and school district, and may be able to provide counsel free or at a reduced rate. You have specific rights to an appropriate education, and they should write, update, and follow your IEP (individualized education program) to enable you to graduate in keeping with your state's diploma requirements (note that this may not be on time). You should keep written/recorded records of harrasing or belittling statements made by those associated with the school as well- check on your state's laws as to when and how you can record conversations. Generally, you have to at least notify the other person that you are going to do so. Good Luck!

Sorry you've been sick! Hope you feel better soon. Next time somebody makes you feel small by congratulating you on dressing yourself, maybe you should just tell them that you're thinking about joining a nudist colony so that you won't have to go to all the trouble anymore!

Granted, upside down people isn't a medical diagnosis, but it does sort of make sense. Just a few examples- Most people try to have low salt diets- we're sodium loading! Most people try to lower their blood pressure, and raising your heart rate to aerobic levels is considered healthy. We try to raise our blood pressure and lower our heart rates! There's a lot that seems counter-intuitive to conventional wisdom to the standard person uninformed about dysautonomia. After I talked to some people, they thought that the upside down thing captured the fact that this really basic system in our bodies just doesn't work quite right and the rather unpredictable nature of chronic disease. Not to mention the fact that it turns your life upside-down...

Since I do a lot of moaning and complaining, I thought I'd share some good news- I just got my blood pressure taken by the wellness nurses here at work- it was 108/72! I was so excited that it is up! And I've been having less severe tachy episodes- hr only hitting at or just above 100! PLUS I haven't had a bad fever (a sign for me that I'm having an episode) or pre-syncope in a while! They adjusted my atenenol dose, and it actually seems to be working pretty well. (knock wood cause I don't want to jinx myself). The funny story is that after the nurse took my pressure, she said 'oh, that's excellent!' I, without thinking, reply 'yeah- I'm happy it's up several points.' She looked at me like I had two heads, so I explained that I had dysautonomia, etc. etc. She said 'oh, so you're upside down.' Which, besides making me laugh, was what I thought a great description of this disease is like- we're just upside down people! (Occasionally flat on our back people, but that sounds like another thing entirely) Hope ya'll are having a good day!

I do get fuzzy sometimes, though not as badly as what some people have described. I make lists, have calendar reminders, etc. I'd recommend trying to find work where writing plays a bigger part then acting- it gives you a chance to re-read and revise. Also, I'm not shy about saying 'I need to go research this, and I'll get back to you' when I feel like I can't respond right away. In some ways, I've found that this need to be consciously careful has been a blessing, particularly in my job (lawyer), which involves a lot of attention to detail. Just last week, I was complimented on my ability to carefully review a document and catch mistakes! And it makes me more concsious about not shooting off when speaking, which is a common problem for lawyers. Finally- Best brain exercise has to be reading!

I do the 'thing with the stuff' bit all the time! So long as it's not in front of a whole meeting, I can normally laugh about it. But there are times when it's really embarrasing. And I can defintely tell a HUGE difference if I haven't slept well, or am sick, or am dehydrated, or sometimes just if the wind is blowing wrong. And worrying about it or getting stressed doesn't help a bit- though I know not worrying is WAY easier said then done. (Whenever somebody tells me not to worry about something, I end up worrying about the original problem plus what the worrying is doing to me!) I hope the doctor can help you, whatever the cause!

I know a lot of people use heat, but that doesn't help my cramps very much. Cold does though. When mine get bad, sometimes I will bend over the bathtub so that the cool edge is pressing right where it hurts. Seems to help the muscles relax. I'm on the generic for the plain old ortocyclen. No fancy low-dose, no tricyclical- just the ordinary pill. I've tried several different 'new' varieties, but they all made me feel bad. Hopefully she'll find the pill for her!