morgan617

i just got back from visiting my family. i had to fly and even tho it was only an hour flight, it was awful. and i was sick the whole time, but you know how you just try to buck up and do stuff? i was never so glad as to get home. i'm glad i went, but am pretty sure at this point it's my last vacation ever. whether driving or flying. it sounds so complicated the way it's going to be done. i guess i would just insist that the car go the whole way and if you get sick, make him take you to the motel or whatever. family just has to deal, period. morgan

doubling up once shouldn't hurt anything, i'm telling you i got a caddy and it's been great. i could never remember if i took my meds or not. it drove me crazy. and my son takes 17 pills a day. we couldn't live without them. morgan

i never had any stamina as a child. i used to wonder where all the other kids got their energy, so maybe it's always there???? the oi i mean and then at some point really rears its ugly head. morgan

congrats gayla! it's like everything else, just hang in there and don't give up. i'm really happy for you! morgan

i haven't been able to drive for over a year. that's a hard one isn't it? morgan

it is a law that your doctor has to provide you with any records you request in 14 days. a law! call the quality assurance office in your state, ask them for the rcw code for this law and then write to the doctor including this info. i had my records in 4 days. morgan

so sorry roy, we've met catostrophic limits on ins two years in a row. we had to get a cheaper car, move, and live off credit cards waiting for disability. we live paycheck to paycheck and sometimes pray they don 't go through before hubby's check. it totally *****. my didsabilty isn't much, but it's better than nothing. so try for that. next year i should get medicare, oh boy. that will surely help...not. our premiums are awful too. but we just plug along like everyone else i guess... morgan

my temp is always in the 97 range. if it's above that i feel feverish. i think i've only had what could be considered elevated temps 3 times in my whole life, and that's along time, lol. morgan

dry skin lol now i remember why i should always proof read before i send. morgan

i always feel like bugs are crawling on me. i hate it. i don't know what causes it, but when i put lotion on it seems to help, so maybe it's just dry sick. morgan

i took clonidine. i took .05mg every day. no real side effects until they raised it then it was just more fatigue to deal with. it did seem to lower my heart rate but i was on it for bp and the dose was too loww to help that. but as i said i did a lot better on it than any beta blocker i took. oh a little bit of dry mouth too i guess, but we drink so much anyway, it only really bothered me at night when i woke up with dragon breath, lol. good luck. it's one of the few drugs i have tolerated with not too many side effects. morgan

good job julie! good luck with it. it certainly can't hurt and maybe someone will listen. morgan

i have a great therapist who writes letters to any doctors that give me grief telling them that when they get their license to diagnose psychiatric problems they can diagnose me, until then she will tell them what's wrong with me and what it is has nothing to do with making things up or malingering, but being physically ill and being treated poorly by doctors who should know better. find yourself a therapist who is an advocate for you. i've gotten letters of apology from er docs. wow. morgan

sorry pushed the wrong button somewhere. fog head, guess i failed to mention that. lately my pulse has been dropping to sixty. it has never been that low in my entire life. i have never been rught since my ablation. now i have arrythmias constantly and these big drops in pulse, but not bp. makes me feel really crummy. i think my sinus node is giving up the ghost. will have to wait and see i guess. that's my story and i'm sticking to it lol morgan

Debbie 49 46, but have been sick for 20 years wash state dizzy, very high bp and heart rate, wiggy feeling, heebie jeebies i guess, severe headache, flushing, very cold extremeties, tremors, nausea, occ vomiting, diarrhea, extreme fatigue, chest pain, short of breath, can't stand up more than a few minutes the above, only not as bad. i do have meneieres, an inner ear disorder, fms, interstitial cystitis, tons of palpitations and runs of psvt. the fatigue never goes away. i have severe reflux and have lost about 50 pounds due to dysmotility. i am trying hard to keep weight on because they will put a feeding tube in me if i lose much more. everything from ace inhibitors to ca++ channel blockers to beta blockers to anti depressants, you name it i have malignant htn so can't use florinef and things that raise your bp or salt to help retain fluids as it exacerbates htn i take 2mg of valium 4 times a day for meneires, but am weaning off of it now, slowly. i also take hormone replacement. that's it

my pcp ordered every test known to man in this area. i actually do have meneires, so it was a little confusing. but the cardiologist who did my ablation, which was the worst thing that could have happened by the way, was the first one to mention autonomic dysfunction. from there i was off and running on the net. i give all the info i get to my pcp. morgan

thanks so much everyone. i am waiting for my primary to get back from vacation and then will discuss just getting into someone privately. we live in washington state, so it could be a very long and expensive trip for a few hours. so it would really have to be worth it. disability helps, buts it's less than a third of what i was making and my husband works 70 hours a week just so we can get by. i really hate to think of spending thousands, unless it's really worth it. will see what my primary says. will consider dr. grubb as he seems to be very popular. but i have an appt. with my doctor coming up and will see what he thinks. this is really frustrating to me only because it has upset my family so much. i'm getting used to feeling crummy all the time, so i guess it's not the huge deal to me that is to them. i don't have syncope, at least yet, but my heart rate has been falling down to 60. i can't remember the last time it was below 90. so syncope may be on the way. i felt pretty awful when i got up and around. my poor sinus node is starting to wear out i think. i imagine it is as tired as i am. lol. well again thanks. this is a wonderful site. morgan

dear wife of pots. yes i did have a diagnoses of oi and pots and my doctor sent my records twice as they lost the first set. he also sent a letter explaining why he wanted them to see me. he has exhausted every thing he can think of to help me. doctors, tests, ablation, the works. he told them there is no one in this area that is capable of doing anymore due to lack of knowledge. it obviously wasn't enough. i think he may be calling them when he gets back from vacation. he is going to be livid. he is a wonderful doctor and i feel so lucky to have him, but as he said, there's nothing more we can do without more specific testing, which is not available here. thanks everyone for your support. i haven't been here much lately as my euesight is getting very poor and the print is so tiny i can't read very well. but you are all great. thanks again. morgan

i had applied for research programs. it costs so much to go, i was afraid to just make an appt. and not get anything accomplished in a day or so. but gosh, it is so discouraging and my husband was crying when he came home for lunch. he is just sick about it and now feels he's just going to watch me die. i don't know how to make him feel better, except to tell him he has done everything for me possible and has always been so supportive. but he told me he was a failure. man, this just *****. morgan

danelle, i'm not sure what got it for me. i do have meneires, but that in itself doesn't automatically get it for you. i'm not sure, i did have a list of things but believe most of them are related to oi. what i listed was fms, oi, ist, ablation, hypertension, things like that. but my tests and stuff didn't bear alot out, as regular testing doesn't. so that's why i say don't just give up. when i had my psych eval i was very upfront and told him i was very depressed at this turn of events in my life. but i can't even get into vanderbilt or mayo, so it's like my oi isn't even acknowledged and it seems to be my worst problem. go figure. morgan

i got it on my first try. so it does happen. just make sure your doctors keep really thorough records and send them all. i know how awful it is, i felt like i let everyone down and even tho i got it, i still feel that way often times. but we can't help being sick anymore than we can help having blues eyes or blonde hair. i can't believe anyone can possibly think we WANT to feel this way. hang in there and don't give up. i never saw an attorney at all. so there is always hope. morgan

wow, just got a pretty little form letter from vanderbilt saying sorry, but they can't see me. no reason why, no anything. i am pretty devastated as this reinforces that feeling that i'm nothing but a nut case. how humiliating. it wouldn't be so bad if they gave a reason, but to not say why leaves so much to the imagination. i don't know what i'm going to tell my doctor, as he had pinned everything on someone trying to help him help me. wow, i guess i'm in shock. i did email them and tell them that letting people like me know in this this cold impersonal manner, certainly doesn't help us. but i guess that's all i can do. my husband is devastated. i only wanted to go to be validated. but he was also pinning everything on some sort of treatment plan for me. does anyone else here ever wonder what exactly it is that God has in store for us..... morgan

i have lost 40 pounds now. i am reduced to eating gerbers toddler foods as everything else sticks in my esophagus and i choke for hours after i eat. sometimes i say bag it and eat something i shouldn't, then pay dearly. i am hoping vandy can help as gerber graduates are pretty. morgan

well, vandy got my second set of records after they lost the first ones. i got my application mailed out today, so please keep your fingers crossed for me. i haven't posted in awhile, because i just seem to be feeling worse lately. read but too tired to write much. anyhoo, i would at least like the validation of knowing somethings wrong and showing to the doctors here who have blown me off. isn't that awful. at least my pcp is bending over backwards to help me. so we'll see. thanks morgan

having been a nurse for 29 years, i can tell you, you aren't alone. many was the time 3 or 4 of us would have to listen and we didn't always get it on a patient. some people just have really loud ones and some don't. morgan