scarfgirl

Hang in there (((((((((((((HUG)))))))))))))))

I was looking at a plastic surgery site, at the compression garments they sell for recovering from surgery. They had these bodysuit type things in different grades of compressions for people who had liposuction on the abdomen, to reduce swelling and help body shape while recovering. Anybody think something like that would help people like us with abdominal pooling?

That sounds about right. From the way the doc explained it, lack of blood flow or low blood volume or whatever caused my heart to shrink making my valve too large and floppy. So it was like a symptom of the OI/POTS/whatever. I hate not having a decent name for what I have. Or I guess I should say I wish there weren't SO many names. I never know what to tell people when they ask what's wrong with me. @kayjay - Dr. Watkins didn't think the Vitamin D deficiency was related to lack of sunlight, so the amount of sun you get won't matter. I guess he thinks it's an inability to correctly process D or something? I wish I had been more clearheaded during my visit so I could have asked better questions.

I echo what Kari says. Don't try the exercises you did when you were healthy, you probably can't do them now. You'll have to research and find out what you can do....a physical therapist can help immensely there. As long as my HR stays around 160 I consider my exercising a success. It starts creeping toward 180 and I stop immediately.

You go girl!

I recently tried a pair of nonprescription compression hose with mixed results. I think when I have to be on my feet for a while they extend the length of time I can keep going. But just for normal around the house wear I don't think they do much. And I overheat something awful in them when it's warm.

I took Zoloft for a few years and just recently started it again. I know it worked b/c at the time I started taking it I was a self-injurer and those impulses (mostly) went away when I was on it and I was much less depressed and more hopeful. The anti-depressive effects wore off after a while, but every time I tried to stop taking it the self injury compulsions came back so I stayed on it. Recently I was taken off Zoloft and put on Effexor, but my most recent doc wants me back on the Zoloft for now. So I'm waiting to see. I'm depressed as **** and don't feel any calmer, but it has only been a couple of weeks. So while my experience on it might be mixed, I can't say anything 'bad' resulted from it.

I find walking with a cane helps, because I'm still WALKING and therefore pushing myself, but the cane kinda gives ppl a clue that I might need some help with things. And while I generally don't get crabby with people (like someone else said, I'm an inward reactor) I've learned to ask for a chair or to skip in line or something when I'm not feeling well.

KC - I know what post you're talking about and I know I MEANT to respond to it. I'll go back now and check to see if I actually did or not. KayJay - My doc is in Alabama. Glad to see someone going with a similar treatment. Do you take prescription strength D or just over the counter? I ask b/c Dr. Watkins said over the counter wasn't strong enough. Yes on the salt intake, he might also consider me for florinef in summer. He said I could try the hose but he hadn't seen a lot of improvement for people wearing them (he did admit however that in the south the overheating part probably outdoes any benefits you get from the constriction)

Hmmm.....I know I pool in both my hands and feet, it's minor pooling but it's definitely there. No clue how to tell about my stomach.

I recently got back from the Birmingham Mitral Valve Prolapse and Dysautonomia Clinic. I had an EKG, tilt test, and exercise test. EKG was normal. Tilt showed clear signs of dysautonomia, as did the exercise test. For both of those tests, my BP was stable but my heart rate quickly escalated. I also had my thyroid checked and it was normal. My Vitamin D levels were checked and came back very low. So I'm now on a beta blocker (zebeta), an SSRI (Zoloft), Klonopin, and Vitamin D. I've been on them for two weeks now, not really sure if anything has happened yet. Dr. Watkins seems very confident, as well as competent, yet his approach seems very different from the research of Dr. Grubb's, which is mostly what I've been following. Is anyone familiar with his work, or have an opinion on his treatment protocol. Like I said, he seemed confident but I'm still nervous and it'll be 3 months before I go back for a checkup.

Wow. I've never thought to examine how florinef might affect my periods, but I CAN safely say I haven't had anything as bad as yours. Are you sure it was the florinef and not just a freak random occurrence? I once thought I had miscarried w/o knowing I was pregnant. It didn't hurt THAT bad, but there was an awful lot of blood. To this day I don't really know what happened then.

Sorry your wheelchair experience wasn't so pleasant. I found using a wheelchair very freeing as far as crowds are concerned. When I'm walking on my own, or with a cane, I tend to get ignored and knocked about quite a bit. But with a wheelchair, people have to get out of MY way. If they don't, they unapologetically get their ankles clipped. I do get stared at sometimes, but it doesn't really bother me and I have no trouble staring right back.

Alternate link isn't working for me either

I got a laptop for just that reason. Don't know if the TMJ is contributing to your problems are not, but you probably wanna get a dental guard regardless. Save a lot of damage to your teeth that way.

Oof, that's a tough question. For myself, and I imagine for most people, mornings are the worst. I'm actually at my best around midnight, but I'm trying to 'force' myself to change so that I sleep during 'normal' sleeping hours. As for how long I can be up, a lot of that depends on what I'm doing while I'm up. Actually, it mostly depends on what I was doing while I was up the day before.

I mostly understand what the low/normal/high classification is saying, but I am clueless as how I could find out for myself which one I have.

Hi again. Doing a little bit better the past couple of days. I even woke up in a good mood this morning, which is pretty awesome since I usually wake up panicked. I hate that I keep taking the Ativan but I just can't focus through all the panic without it. I think I am starting to get it through my thick head that I can't control a LOT of what happens in my life, so I need to work with what I have instead of trying to get what I can't. I still play the 'if only' game a lot, but it's not my only thought now. I wrote down all the stuff I was worried and feeling hopeless about. There was a LOT there. The two big things though were MONEY and LONELINESS. As far as money goes - I get $430 from SSDI. Depending on how divorce goes, I may qualify for SSI as well which brings me up to $675 (plus I will get Medicaid). Also depending on how the divorce goes I may get just enough money from my husband to disqualify me for Medicaid...but not enough to afford Medicare supplements or any other form of insurance and still pay bills. I just can't see a good outcome here, and it makes me feel hopeless. I just run this problem round and round in my head. Regarding the loneliness, most of that is the fear of starting over after a divorce. My husband really was my best friend....towards the end mainly because he was my ONLY friend. I was pretty isolated, and still am. I can't seem to get out enough to maintain friendships. The second I have to drop out of the social scene, everyone forgets I ever existed. And I get too heartsick to maintain friendships with people who constantly forget about me. And I know the internet can be a great place for when I'm stuck inside, but I don't seem to have the skills to start and maintain friendships online. So there's all that. Felt good to get it out.

ditto

Adderall was awesome for me physically! I could do stuff I never could before. Sadly, it also made me want to kill myself (ironic huh?) so I stopped taking it. Would like to talk to my doctor about trying it again....maybe just on bad brain fog days instead of every day? Prettyinpink, do you have any addiction problems with it?

Hi guys, I'm about the same. I'm making myself exercise every day even though I don't want to, so I have that to be proud of. With everything else though I'm still gridlocked, stuck between deep depression and barely contained panic. I still lack the will to do anything to try and improve my situation, and that makes me really angry at myself (which probably doesn't help the depression). I'm trying to force myself to think through things at least so I can at least get a grip on my options but it's hard to get things to form into a cohesive picture. I wish I had a caseworker/advocate type person that could go through everything with me and help me figure things out. I even asked DSHS for someone like that, but they said they only provide them for mental health cases. Boo. I'm gonna try tomorrow to just make a list of EVERYTHING, absolutely every unhappy thought that pops in my head about my life, then go from there. I'll make sure to take an Ativan before I get started Thanks again for all the advice and well wishes. It's great to have a sounding board that doesn't make me feel crazy, or pressured to be a certain way.

I go back and forth. Sometimes I hide it for as long as possible, other times I practically blurt it out as soon as I meet people. I've never figured out when is a good time to bring my illness up without having to deal with awkward explanations or questions. If only POTS were more well known....or at least remotely pronounceable. For me the worst is still the "So what do you do for a living?" question. I HATE that question.

Good luck and best wishes

Thanks everyone for listening. I'm taking Zoloft right now. My therapist is back in Seattle, and I can't find a new one down here because they're all so far away and I have no one to drive me. I'm trying to read self-help books to make up for it. I have more to say, but I just can't get my brain to focus at all right now. Maybe later tonight. Thanks guys.

This year has been a rough one for me. I've been sick for almost a decade now, and while I've had my ups and downs I've never really gotten better. Then in June I caught my husband cheating on me, and rather than work things out he decided to leave and file for divorce. When he left I lost a lover, my best friend, a caretaker, all my money, my insurance, and my house. (I even lost my reason for living, since I had been able to get by knowing that at least I was helping him find happiness). I had to move back in with my parents, who live out in the middle of nowhere. I feel alone and very scared. I know, logically, that I can get past this. I know people have been through a lot worse than me and come out alright. But it's getting harder and harder to even want to try. At first I was optimistic, and made plans for schooling, for finding a job, for getting a social life. I made a strong commitment to exercise, and learned how to enjoy being away from all the negative aspects of my husband (how he always quit when things got hard, judged others, avoided dealing with anything, chose popularity over morality). But then I get sick and realize how far fetched all my plans really are. And I get angry at my ex all over again for not being willing to even try--for once again taking away my choices, and scared that the life I live now is the only life I will ever know. No kids, no job, no life. I know I need to accept things as they are, but I just don't know how. All I want to do is play the 'could have been' game over and over again in my head. I've tried therapy, I've tried anti-depressants, I even re-tried religion, but nothing has worked. I have to have some sort of meaning in my life to be able to keep trying and right now I don't. Without something to focus on, all I want to do is sleep and cry and think about killing myself (I won't, but that doesn't keep the thoughts from coming anyway). What am I doing wrong that I can't handle this? I feel so desperate right now.