Rachel

Margaret, Where do you find the BFO cushions? I've looked online, but didn't find any. Is there a particular online store that would be good? It's hard for me to go out to stores to do shopping. I've checked spinlife.com, but theirs were mostly the expensive ones. Rachel

Some brain fog blunders of mine: "Greg came over to get the red stuff. You know...the red stuff. What's it called? It's red." ---I was talking about ketchup and for the life of me couldn't remember what it was called!! Yesterday I called the vacuum cleaner a "trash can." Usually my sentences come out something like this: "Uh... they are in a drawer... a rubbermaid drawer in the bedroom.. uh.. the closet." It's a good thing I can type on the forum. That way you don't hear the weird breaks in my sentences when I can't remember a few words!

Dear Niki, I'm so sorry! That was a mean and terrible comment for that guy to make. It gives you a picture of his true character. If all he is after is the outside then he's not a true friend. A size 3/4 is tiny! I'd be thrilled just to be an 8 again! Try not to worry about the weight gain. Hang out with some friends who like you for you - whether you are a size 0 or a size 3. Work on your inner character, put a smile on your face, and know that you are beautiful. Rachel

I have POTS, OH, and I'm still trying to figure out which other things I was diagnosed with are actually true! An antibody was found in my blood that antagonizes m2 muscarinic receptors. Basically this antibody messes up the process of the brain sending messages to my heart, lungs, veins, and other smooth muscle tissue in my body. We found this in a study done at Johns Hopkins. M2 receptors are a fairly new discovery, I guess. I asked my neurologist about them because I was trying to do more research. She seemed kind of embarrassed that I knew as much about them as she did. It must be rare to have an antibody to m2 receptors because there is very little info on them online and I've never found anyone else with this antibody. Rachel

It's confusing because different doctors use different terms interchangeably. I was diagnosed over 10 years ago with numerous things. I'm in the process right now of going back through my medical records to find out which ones are technically accurate, or which ones were just a different name for something similar to POTS. For example my ttt clearly showed POTS and severe orthostatic hypotention. But my cardiac electrophysiologist didn't always use the term POTS or OH. The National Dysautonomia Research Foundation says that POTS is one of the three main categories under Orthostatic Intolerance. It lists Mitral Valve Prolapse Dysautonomia and Idiopathic Hypovolemia as the other two OI conditions. I think there are other forms of OI too. Basically OI is a blanket term that covers many different types of Orthostatic Intolerance. So if you have POTS, congratulations, you have OI too. Good luck sorting through all of the terms and trying to figure out what each doctor means by each term! Rachel

Thanks for the update. Poor Sunfish. I'll be sending a card your way. Rachel

Keflex and Zithromax have given me good results. Rachel

Wow, that sounds like a great opportunity! You never know how POTS is going to treat you in the future, so if you think you can make it through the trip now, I say, go for it! If it is a life goal to go to Africa on a Safari you might regret it later if you didn't take the opportunity. Would you be able to block out a day or two on the trip to just stay at the hotel and rest if need be? We recently made a 6,000 mile road trip to move cross continent and we blocked in many days for me to rest and crash. That helped a lot. As far as the vaccines go, I've only had two of the ones you listed after the onset of POTS. I had the Hepatitis B shot, and whatever is in the booster shot. I didn't have any adverse reactions to those. If you're worried about the mercury preservative, you can request shots without them. Let us know what you decide. Rachel

Hi Jacquie, Wow, it'd be hard to turn down a free trip to Costa Rica! I can't fly anymore because I'm not able to sit up long enough. But if you're able to sit up for the flight it shouldn't be a problem as far as POTS goes. Just bring Gatorade, snacks, and compression stockings. As far as the anxiety goes, I don't have advice. I've always loved flying. Hopefully someone else will be able to help you out on that one. Let us know what you decide. And if you go, Have Fun! Rachel

Good Luck!

Michigan Jan, I am sorry for your loss. I will be thinking of you and praying for you. Thank you for sharing the beautiful slide show with all of us. Rachel

I don't have insurance right now. :-( Otherwise I'd be getting a new wheelchair too! Part of my problem is that the seat on my wheelchair is stretching out and I'm sitting on the metal bars underneath. Ouch! So I was hoping that it would be cheaper to buy a cushion to get me by until February when I qualify for Medicare. I just found my local Independent Living Center. Sometimes they have jay cushions and roho cushions that you can borrow. So I'll be calling them this week. But I'd like to get my own cushion if I can. There are so many cushions to choose from that I don't know what to get! There's gel, air, foam, and combinations of those! I've called all sorts of stores that sell wheelchairs and medical supplies, but none of them have cushions to look at. They only special order them.

I don't have a Roomba, but I remember reading some good things about them a year or two ago on a post. If we're ever living on our own again I will definitely be getting one! Rachel

Do any of you use wheelchair cushions? Do you make your own or buy the $100-$400 ones? Do they help at all? I get sore sitting in my wheelchair for an hour because I can't sit up straight that long. So my tailbone hurts. And sometimes my leg bones hurt because I lean over so far to the side. But the cushions are so expensive! I can't afford the expensive ones, but I'm not sure if the ones that are less than $100 will actually work well. Any advice is welcome. Rachel

Wow, I know I do this all the time, but I have a hard time remembering the crazy quotes! I'll have to take note for a day or two and get back with you.

Most nights of the week you will find me eating popcorn and watching a tv show with my husband.

I've just purchased my tshirt! Thanks, DINET and volunteers for all you do for Dysautonomia awareness! Rachel

DizzyGirl, Glad to hear that help is on the way. Hang in there and get well soon. Rachel

If you're able to go, you should! Lounging around at a resort sounds wonderful! That'll make the flight worth it! I can't fly anymore because I can't sit up long enough. If you can, I think you should take advantage of the opportunity and enjoy yourself! Hope you have fun. Think of us while you're relaxing in the sun!!! Rachel

Briarrose, I'm late to this topic too, but just wanted to say I'm so sorry that happened to you. It is frustrating enough to have to deal with brain fog and have difficulty expressing yourself. But it's even more frustrating (and hurtful) when someone doesn't believe you when you try to explain memory and brain fog problems. So sorry. Hugs, Rachel

Nina, So sorry you're sick. Christmas is fun, but not Christmas in your nose! Get well soon, Mighty Mouse! Rachel

Thanks everyone for sharing your experiences and your sense of humor through it all. I loved the stories. Dizzy Dame, your story about being "cured" and walking around made me laugh out loud! Have any of you ever lost your wheelchair? My husband and I did that just this past fall! We had to do some shopping in town. First we went to the Great Harvest Bread Co. and had the sample slice, plus bought a couple of loaves for friends. That was around 11am. Then I was too tired to do any of the shopping, so I just stayed in the van and laid down while my husband went into all of the stores. By 6pm I needed to get out of the van for supper with some friends. Will (my husband) went to the back of the van to get my chair and said, "Rachel, where's your chair?" I said, "Where did you put it???!!!" We racked our brains trying to figure out where it could possibly be since I'd been in the van all day. Then we remembered the Bread Co. We had left it in the parking lot there that morning! We drove back and my husband went into the Bread Co. and asked if they'd found a wheelchair. The man hollered to the back of the shop, "Hey! The wheelchair guy's here!" And one of the workers wheeled out my chair. They had found it in the parking lot and brought it in out of the rain for us and kept it safe all day.

Dear Maxine, I'm sorry life is so difficult and painful for you right now. Know that we all care about you and we're here for you. Hang in there. I hope you can find some chiari specialists who can help you and offer some treatment to bring your life back a bit closer to normal. Lots of hugs, Rachel

Thanks for sharing the pictures! They were so nice to see. I miss winter! Now that I'm in Georgia it is 70 degrees and doesn't feel like winter or like Christmas is coming. So it was nice to get to imagine winter. :-) Rachel

Melissa, I'll be thinking about you, praying for you, and wishing you well. Rachel