morgan617

I'd try to figure out why it was sent to Idaho and go from there. Good grief......I'm sorry, I have no idea why that happened. Good thing Lois has a thinking cap! morgan

It's retro active back to the date you state you filed it as becoming disabled. So, if you became disabled 5 years ago, but didn't file till 2 1/2 years ago, with the date being 2 1/2 years ago, it will only go back that far. There was a specific date you put in for the day you became disabled. Mine was March 18, 2003. I only remember this because it was my sister's birthday and the day of my ablation. I was accepted on my first try, but got nothing for the six month waiting period I had to go through and my first check came the seventh month, in the last week, because my birthday is the last week of the month. So, it was a full 7 months and my first check was the monthly income I was going to receive. I am guessing the lawyer may get first dibs at the 25% he's going to get and then you will get yours. If you are married or filing taxes jointly or anything, watch for taxes. Your SSDI is taxed and if you make too much with a partner or on your own, you can end up paying at tax time. It all depends on your income and how you file. Medicare comes automatically in two years from the date you get approved. I got approved in August, got my first check in September and medicare started in September 2 years later. If you are really low income, you may be able to get SSI benefits, which include medicaid, not to be confused with medicare. But it's all so confusing. I have mine (ssdi check) as a direct deposit and it is always there the fourth Wednesday of the month. Hope I didn't confuse you more. Most lawyers will have you sign a paper that says they get their share before you see anything. But I would think it would only be a month or two, and after 2 1/2 years, I guess they think that's nuthin.....morgan

Well, one of the reasons I had to get a pacer, was so I could take atenolol. I had huge drops in heart rates and atenolol made it worse, but going without made it even worse. If it takes you having to take potassium, to be able to use florinef, which really helps you, maybe it's worth it. That's what you will have to decide. I'm glad they are looking at kidney tests. I can get them to increase my dose of K+, but can't get them to test my urine, so I am glad you have more luck than me in that dept! morgan

Dawson, have they done any kidney fuction tests to see if you are losing all your potassium that way? I have what's called Periodic Paralysis, so no matter how much K+ I take, it never seems to be enough and it's one drug I do develop a tolerance to, so keep having to up the dose. There are different treatments for low potassium levels, depending on what's causing it. But a fairly simple test is just to see how much you excrete when you pee. If it's greater than 20, then certain tubules in your kidneys could be the culprit. If you do not excrete very much, it could be an ion channelopathy disorder, which is a genetic mutation. Yes, all that potassium makes me absolutely miserable. My gut is the worst it's ever been and not getting any better. But not taking it causes even more problems. It is an absolutely whopping dose and would probably kill a normal person. There are people with this disorder I have that take 240-250 meq a day to try and keep their K+ above 4. Anyway, you might ask your doctor about the urine test. if you want, I will send you a link to the testing, just pm me. morgan

It can lower potassium levels in some people, so it is always advisable to discuss anything new with a doctor, as sunfish so wisely already said. Even OTC's can cause potential problems in some people, so it's always best to discuss it. morgan

It really takes a lot to get potassium IV. I've been at 2.3 and still haven't been given IV K+. The only time I do get it without question is when I get my scopes and they dilate my esophagus, because I can't take it by mouth. IV potassium is very very hard on the veins, very irritating, and unless watched very closely can be potentially dangerous and docs just don't want to mess with those consequences. They will almost always go oral over IV. Joe, bananas have a ton of carbs in them, besides potassium. The carbs cause insulin release, which in turn uses up potassium, so for some people, they are worse than doing nothing. There are other foods out there with less carbs and more potassium you may want to look up. I don't have my list handy and I take so much prescription, it's kind of a moot thing for me (equal to or greater than 150 meq a day). This keeps me at a low normal range. Anyway, some foods recommended by docs actually may drop your potassium, because the carb content is worse for you then the potassium amount is good. Just an FYI...morgan

I haven't heard of that and I'm old so had my babes the old fashioned way. Who knows, though, when they are messing with your neuro system? With all the epidurals given, and the fact that you had some symptoms before the epidural, I guess you might have been predisposed to POTS and the reaction kicked it off. I usually think that however. There is a predisposition and some unfortunate thing causes it to become more severe, or a lot more women would have OI. I can't remember the last time I heard of someone having "natural" childbirth and so many babies are born, it would seem to be much more of a problem if epidurals were the problem. But I also believe in immunizations, and that seems to be a real bone of contention too. We can try until our faces are blue to find the exact cause, but I don't think many of us actually will. Someday......morgan

In a normally healthy person, the bp will rise slightly and the pulse quicken a few beats to equalize going from a supine or sitting position, to a standing one.. After a very short time, it will dip and the pulse lower again, as the body has adjusted to the gravity of being upright. In orthostatic hypotension, the bp drops a lot more and the pulse increases a lot more, as the body works feverishly to get blood to the head, and then it doesn't want to come back up...it gets stuck or keeps dropping until we faint. As soon as we are lying down, the body isn't fighting gravity anymore, so we come to, or feel better, as the blood is equalized when we are lying down.. Even healthy people will have this problem if they've been sick and get dehydrated, the astronauts get it temporarily after space flight. There are times it can be considered a normal response to circumstances. For us, however, these wide swings occur randomly, or all the time, and for no apparent reason. Orthostatic hypotension is an underlying symptom of something else going on. When you are otherwise healthy, it's a symptom telling your body you need more fluids. For people like us, it's an indication that the system controlling these things is out of whack. There are many different causes. Blood pooling in the legs, the body thinking it's dry, pituitary stuff, many things. Sometimes we just can't figure out the exact cause. I think of myself as having a short in my system I was just born with. So, yes, orthostatic hypotension is a symptom of an underlying condition. It is not a condition in and of itself. There may be people that disagree with this, and please feel free to say so. I hope this helps...morgan

PLEASE...do not make my thread about political statements!!! It is not about politics, it was about my frustration at yet another dead end diagnosis that has nothing to do with private or universal health care or politics. It was about being frustrated at life in general....Thank you...morgan

Has anyone seen chloe, my avatar? what happened to my baby?????

Well, I have to say, I am sorry I got it. I think I shouldn't have taken all my potassium and meds, but who knows. From what I gathered, it sounds pretty much like my son's and they slapped a cpap on him within a few days, although his was mild too. It just gets annoying. I think if she had just said, you have episodes, but they are not enough to fit the criteria or whatever. But then, who are people to decide that because you don't drop your sats to 70%, it can't possibly affect you. If you are already very compromised on just about everything, it doesn't take much to push you over the edge. Ya know. If they don't mail it, I'll just go get it. Dawg, I love it, he said to me, you fall asleep so fast...well DER, I can't stay awake. And you get the opposite....I'm sure my primary will love this after I've already had to grovel at his feet and he has refused to order one, I can picture him nyahing me at this moment, how pathetic is that. Now I get to wait for poo results that will say, these are not normal, but they are just not abnormal enough.....Lord help me....morgan

maryf, yes, I will be unable to find words and have long pauses between words, my hubby says my voice gets very soft and my speech very slurred. It took me a long time, but I finally am beginning to recognize when I am having problems. It used to really annoy me when they told me, because I couldn't pick up on it myself....morgan

I got a call today from a tech. She woke me up, so I was a bit rummy. She said I don't have sleep apnea, I just have "events" I asked her what the events were, if not sleep apnea, and she said , "well sleep apnea." I guess it's abnormal, but not abnormal enough. Just as I predicted. But I'm not sure how they can say I don't have sleep apnea, but I just have sleep apnea???? I called and asked them to send the report. (She said I could call and make an appointment if I had any questons, yeah like I'm going to pay one more penny for that kind of double talk......so I hung up.) I guess when she said "events" I expected some disturbance in my sleep pattern or something....am I still this stupid???? morgan

Welcome, I take massive doses of potassium, and have a very hard time with heart rates that are way too fast and then drop like a rock. Atenolol accentuates it and i got a pace maker a year and a half ago. They have tried several times to up my beta, but even with a pacer the beta is killer, fatigue wise. Many people on here run borderline or low potassiums, I'm not sure why. I have a specific disorder. I am glad you are doing better and hope it stays that way! morgan

Hi Joe, welcome! I stopped driving in 2005 after my first syncope. My husband and son can pick up almost immediately when I'm starting to have problems, due to speech and walking and falling like a drunk, without the effort required to drink any alcohol! Brain fog is very common. I have tachy brady and got my pace maker a year and a half ago. It has helped a bit. With the pauses and rates of 30 that dropped me like a rock. Driving is a hard thing to give up. Do you have a scooter or power chair? Those can be really helpful in stores and things. I was going to say something else, but brain fog has me in it's grip... morgan

Welcome and don't feel like the Lone Ranger! Ernie put up the link for all kinds of info. This is a wonderful community of people who understand the "crazy" thing. You may have to go through several doctors to find one willing to work with with your disorder. It will pretty much be up to you to learn all you can and help them in most cases. But you are NOT crazy, just sick with a pretty rare disorder that most people do not understand. Don't give up and there are many here willing to help and offer support...morgan

Holy guacamole, you've had your share of stuff!!! Welcome to the site. Just about everyone on here has gut stuff, but certainly not to the extent you do. I don't have diabetes, but do have inflammatory bowel which causes a lot of fluid loss. Are you on any type of tube feedings or can you drink lots of fluids? That's about the only recommendation I can make, since most of us suffer from odd dehydration and with short gut, you lose fluids even faster. Which, of course, causes the autonomic system to go way out of whack. You are very young to be having all this stuff and still remain very upbeat. I'm impressed. Hopefully others on here can relate a bit more, but I did want to welcome you. If nothing else, you will certainly have the support of people who "get" chronic illness! morgan

Good grief! That's the kind of sensitive person you want dealing with you for stuff like that! We get a lot of stares when we park in the handicap zone, which we don't that often, because Dave doesn't mind pushing my chair, but once he pulls the chair out, they stop. I tend to look at some people and wonder why they don't have one! I'm sorry that guy was so insensitive. morgan

I should add that when I am flushed, my hands are very clammy, but can be warm or cold, but my feet ALWAYS feel like blocks of ice. It's like the blood in my upper torso has taken all the blood from my feet. They turn dead white. Then when the surge gets better, my feet get a hot surge that actually feels like burning and they turn a maroon color. It's very odd. morgan

My neck and lower face get very flushed during surges. it's typically bad enough to be the first sign my family sees to know I'm in trouble....morgan

Thanks Corina and Ernie (I totally got what you were trying to say Corina) I did write him a letter and I did apologize. But I do wonder, is he upset that I get sad and frustrated and let him know, or is it just his ego, because he can't help. I think about my life, and I wonder. If he woke up tomorrow and: He literally lost the ability to work in one day, he lost his license to practice medicine, he got shunned by family and friends and actually lost every friend, he was called psychosomatic, attention seeking, hysterical, he fell down and couldn't move, in two months he went from walking 2 miles a day to needing a wheel chair, his BP went from 200/120 to 90/40 in 3 heart beats, he needed a pacer at 51, he fell down and broke bones, had to hang on to things to get around, lost his driver's license, had to depend on his family to get him anywhere, lost 50 pounds and had to eat baby food, paralyzed and couldn't talk or move, couldn't go shopping, or out to eat, or to church, couldn't read longer than 10-15 minutes, couldn't stay on a computer more than ten minutes, had pits on his corneas from his eyes being so dry, couldn't have sex anymore because his partner thought it was going to kill him and it almost does, his doctors stopped returning his once every 3 or 4 month calls, refused to give him referrals, he couldn't work on his house or in his yard, he had to depend on someone else to support him and watched them killing themselves to do it, couldn't take care of his family, his gut was getting killed by his meds, then would he EVER get frustrated, would he EVER get angry, would he NEVER vent????? I don't think so. I have never once asked him to cure me, I have never once said it's his fault I don't feel better. If just once, I could go into a doctor's office and just get validated by them, without anything else, (like, I know how sick you are deb and I'm sorry...as opposed to I know how sick you are deb, but there's that psych thing too) maybe, just maybe, I would feel better. And if maybe once every couple of years I vent out my frustration, is that a horrible thing? I'd like to meet ONE person on this earth who has never gotten angry at someone when it wasn't justified. He demands my validation that I still think he is a great doctor, which he is and I do and I never say, "but" I tell him unconditionally. But I am not allowed the same thing and if I ask for it, I get a letter like this. So, not only do I get to be sick and just exist here, as opposed to living in any way...I don't even deserve any validation and no one hesitates to let me know in no uncertain terms. As you can see, I didn't fall asleep very quickly last night. So, I sent him a letter validating and patting his fragile ego, and I am the bad guy. For having something I have no control over...again. It's not his fault he can't fix it, but it's not mine either! I think I have a right to be sad and maybe sarcastic sometimes, I have lost my entire life and some days are just dam harder than others, and I think they should understand that. Back in my hole, but am I wrong?

Well, I got a letter back from my doctor and he totally reamed me out He said I was sarcastic and he was sick of it. I can't remember a single thing I said that was sarcastic or aimed directly at him. He was so mean, I bawled for 3 hours or so. He said he was more than happy to give me referrals, but was sick and tired of my attitude. It was horrid. I wrote him back and said that i thought it was one of the "flattest" letters I have ever written and I had no idea of how I had offended him. I told him I was sorry i had, it wasn't my intent. But I am tired of feeling like ****. He admitted he had no idea of what to do for me. Well, how about some referrals to someone that does then? I can not afford to lose him as my primary, because no one else would take me on...I am not being dramatic...this is the truth. I don't feel good about it anymore, just like I've been blasted with tnt or something. So, that was a disaster. And the fastest he's ever responded to me. I'm crawling in a hole and giving up for real.....morgan

Emily....

Oh Corina, I am so happy for you. Over the moon! Please keep us updated on your progress and if you'd like send pics modeling your suits and we can all ooh and ahh!!! I will keep really good thoughts for you! happyforyoumorgan

I think with my bad fibro, sophia, they will see alpha delta on mine too, as it's so common with that disorder. When I had my last eeg, I had tons of beta spikes too, but couldn't find a lot of info on that. I never felt like I went to sleep, but they said I dozed off.