roxie

I've people say that weddings are good places to meet guys, lol, but idk. I"ve only been to family weddings before so I can't really speak, but we will see next June won't we! I'm just happy to be in the wedding Jan, have you tried walking a minute a week longer? If so, how did you do with it? I am interested. My abilities right now sitting up for 40 minutes wears me out, so it may be a while before I can walk, but my friend also said I can use my wheelchair whenever I want, so if I could just sit up for the whole thing. And YES Jan, if I use my chair down the aisle I will have a groomsmen push me At my best I could walk for 10 minutes a day, so 40 seems far off, but you never know if I my body handles mestinon this go round, maybe I can walk for 10 minutes a couple of times a day I am just babbling, but w/e if anyone has any tips on building endurance PLEASE LET ME KNOW!!! Madeline

Funny you say that Amy, my friend getting married graduated from college last May with a degree in athletic training. However, he job is three hours away from where I live, but I could talk to her. Madeline

Thank you for all the sugestios! A week later I am calming down some, so is my bp! I"ve decided that I will allow myself to think about it only for a little bit each day, and as time goes by and sets in its not as much of an adrenaline rush, i just get a smile on my face! My dr isn't to keen on me taking other things besides my perscribed meds. It's just so flattering and exciting, I am sure you can relate, I have been sick since I was 12 and until the past year or so never really done anything normal or had friends. I used to dream about oppurtunities never knowing if I woud have them, somethinge excites me about putting on a pretty dress!!!! This little thing is something that gives me even more hope! I do a small amount of exercise and would like to increase it over the next year, I would like to get TONS stronger over the next year or so, but we'll see what happens. I have had a bad summer and am trying to find the best approach to strengthening my body so I can sit up for the bulk of it and walk down the aisle! Does anyone know the best way to do that? Madeline

rachel, i started out with the liquid b.c they didn't make a low enough dose for me to start with, i have the same problem as you!! i may be giving it another try this month staggering it, like every three days and see how my body handles it b.c before it helped so much i'm trying to figure if I should retry procrit and i don't know my mind is constantly cahnges, has anyone had good experieces with mestinon and procrit? madeline

Dr Guest, does that mean there is potential that I could get benefit from retrying other medications I have been taken in the past but stopped for various reasons? One med that helped was Midodinre but then my bp would shoot up with just a half of a pill in the AM. It could change now that it's been a few years? Maybe it has to do with the florinef, I have been taking that for 9 1/2 years. My body is just very wierd though, no one really knows what to do, it is all trial and error Madeline

I did better with Mestinon then with any other medication, I was able to go out 2-3 times a week!!!! It took me awhile to get that strong with it though, so give it some time as long as you tolerate it Dr. Guest- you said tha mestinon isn't supposed to increase bp, but after taking it for ayear and a half last spring all of a sudden my bp went high, we had to take both my florinef and my mestinon down to half a dose. The times we have tried to increase it my bp has gone up within 2 days Soon I would like to try staggering the doses. Are you sure mestinon doesn't cause hbp? It's soooo frustrasting b.c no matter what I do I can't regain the strength that I had with more meds, but my body doesn't want to handle. can your body change like that? I just don't know what to do and get disappointed sometimes. we may try and back track on other meds I have taken Madeline

I need some advice on something normal people just don't understand. This weekend a friend of mine asked me to be one of her bridesmaids!! She said she would be honored to have me in the wedding even though it will take ALOT of energy and that she wants to be as accomidating as possible and is completely ok with my wheelchair. This really is a dream come true for me, I have been sick since I was twelve and until a couple of years ago didn't have any friends. I used to wonder and feel sad to think I might never be close enough to anyone to be involved in a wedding ( I LOVE getting dressed up and planning things) and get sad over the fact that I myself may never get married. But this week I have hope b.c my friend asked me to be in her wedding and the biggest problem i am having is that I am SOOOOOO excited, I start to not feel well, a few times my hands have trembled, it's just so much adrenaline, and my bp has raised some, and my heart races at times Does anybody have any ideas how to calm this down? I know its not good for my body, being included in something is just a dream come true. The wedding is in June, hopefully I will come down once it sets in Madeline

Lauren, I had braces for two years when I was sick and I didn't find it too painful. Sometimes when they change the wires or bands you will be sore like you have loose teeth and have to eat soft food, but other then that I had no problem at all. I talked to my ortho and his hygenists about my health and they were very accomidating. If its just braces I don't think you'll have a problem, be sure to make brushing a priority. My ortho said that if I am out somewhere and can't brush after eating to just wet a travel toothbrush and rub it around. You might want to invest in a waterpick, they work wonderfully and take a lot less energy that flossing! Madeline

ya, its like a tightness. i said cramps b/c it sort of feels like being stuck in too small of a space for to long of a time, you know how that it?you just want to stretch out when you get out

rachel, what did they do to treat that receptor the first time you were sick? madeline

Thanx for the podcast. It was informative to learn to take POTS seriously and to touch on the subject. I was diagnosed with OH in 1997 and we knew that my heart beat WAY toooo fast and somehow over the years started getting called POTS. I got sick when I was 12, and turned 22 last week and am not healed Without medication I am no better then what I was 10 years ago, so I don't know if it's just going to go away, but then again you never know. It is nice to know that it is becoming recognized and that they are doing research to hopefully find a cure no matter what our age may be. Does anyone know anything about the antibody thing Dr. Fischer briefly mentioned at the end. If you do PLEASE PLEASE explain it and any possible treatment? I have had a high ANA since I got sick, but my dr doesn't know how that fits into the mix. Madeline

Corina, that is some great advice!!! Unfortuantely, yes kate people will stare, at least they do at me. It all depends on how you want to handle it, if you stare back they will look away. sometimes I do a beauty queen wave just to embaress them! hahaha sometimes my mom will say something like, "it's so rude when people stare" or "take a picture it lasts longer" the staring issue is still hard on me sometimes 10 years later, but you just have to get to the point realizing that your wheelchair is your passport to adventure and that if people are staring at you critically it's there problem for not having compassion Madeline

HI! Supporting the troops is a great things!! My family has a close friend in iraqw right now, his mother is always sending him things, and as my energy permits i write him lots of letters, thats the thing he wants the most, so he can take them with him on missions!! at my dads old job they made care packages for soldiers and i crocheted hats to send to them. one word of caution about anysolidier.com anyone can register on that site, so some of them aren't really in the servicel. i found this out from my friend in the marines, sometimes they have no connection to the military at all.

sometimes i wonder if i have a confused system as well, one day i think o it must be low-flow and then the next i think i'm hyperadregnic so idk its all so confusing

i also always have someone pushing my, i would NEVER NEVER be able to handle it on my own Madeline

I definitely use a wheelchair, if I didn't have one I'd rarely ever get out of the house, let alone go to the store. Insurance covered mine and I got it from an orthapedic place i think, you would have to check with your insurance for where you live, I got it from the same place that dispenses my stockings, I've struggled with alot of insecurity b.c of my chair but I am slowly learning that the wheelchair is actually a gift b.c without it I'd have no hope of doing things Madeline

I WONDER THAT TOO!!! well, i wonder what really is gastroparesis? how it is treated? And how do you tell the difference between gastroparesis and IBS???? Does anyone know? Please let us know if you do Madeline

yes, lying down really helps me nausea, when i don't i feel like i'm going to keil over

Whenever I eat I get nauseas and bloated, but I also feel like my whole body gets cramps. I always have to go and do stretches after I eat, and the lay down b/c of the bloating and nausea. Does this happen to anyone else? If so, what can I do about it besides stretch? Madeline

LThomas, do you know of anywhere that dr. stewart has listing of how to treat the different types? I've never been able to find it on the his site? Also do you know of anyway to explain the different types is an easier way to understand? I've always been confused by them? Madeline

does anyone else have trouble viewing the "face od dinet" site? when I click it on my computer freeze? i can't figure out why? Madeline

Here's the link where he talks about purple people: http://www.nymc.edu/pubs/Chironian/Spring2003/blood_circ.asp now that i go back and read it, i see that he doesn't identify either group in this one... the reason why i thought that is b/c I went to see him, Im a purple person and I have a vague memory of saying I was low-flo, I could be wrong though...I was on the tilt table at that time :0 Madeline

Here's a site that might help you understand It's down towards the bottem of the page http://www.phoenix-cfs.org/Orthostatic%20I...20-%20Types.htm Madeline

Actually Lthomas, i think according to dr. stewart in nyc that the "purple people" as he calls them are the "low-flow" POTs and the ones that don't change are "hi-flow" but don't quote me on that

I have this problem too, within a matter of minutes, just sitting without my stocking and they get sore to the touch. It affects my whole legs as well as my hands, elbows and I think sometimes my face. Frequently by the end of the day my nose and sometimes my cheeks get blotchy and purple as well. Madeline