When I was little, I used to fantasize about being famous. Come on, who didn't? I thought I'd be a big actress in a musical on Broadway or maybe even the voice behind a [gasp!] Disney princess! Well, my friends, my body is just SO thoughtful and considerate, so it found other ways to fame...through a medical journal devoted entirely to yours truly and my exra-special (otherwise known as a hot mess) body!
Today I had my second appointment at Mayo, with the department of internal medicine. My appointment began at 9:30 and I left around 4:00. I know what you must be thinking-those doctors are just NEVER on time! Guess again my friends, because I was actually taken promptly at 9:30, but had a LOT to discuss with my doctor. I walked her through the past year and my current list of symptoms. Allow me to provide you with some of the highlights of our discussion:
1. "So...you are absolutely sure that you didn't have ANY of these diseases before this year?"
2. "I must admit, you have certainly tried everything I can think of!"
3. "Wow, you really do NOT do well with medicines, I didn't even know that was a side effect."
4. "I've never met anyone who has all of these issues at once."
Drum roll please...
5. "Well we will definitely be writing a case study in our medical journal once we have put together your puzzle. Don't worry, we'll just call you a 28 year old female."
I know, I'm a pretty big deal. Feel free to start sending fan mail now.
Several times during the past year, Postural Orthostatic Tachycardia Syndrome (otherwise known as POTS) has come up in reference to my symptoms. My doctor today confirmed that I do, in fact, have POTS disease. POTS presents differently in every person and no two cases are alike. Lucky for me because I don't think the medical journal will be long enough for TWO people like me and "Haas Buschenfeldt Syndrome" is already a pretty long name. In a nutshell, POTS affects how your blood moves through your system. It involves autonomic neuropathy, which means my nerves are not properly managing the systems in my body. The nerves that are supposed to move my blood and regulate my blood pressure, equilibrium, hydration, sodium levels, etc., don't work and my body is constantly resorting to plan B (or C...or Z.)
Every other hospital has told me that it is just coincidence that all of these aspects of my body broke this year, and that they aren't connected at all. I refuse to believe this and luckily, my doctors at Mayo don't believe it either. I'm already scheduled to meet with ENT, internal medicine, rheumatology, GI and surgery. Today we added endocrinology, neurology, dermatology, vascular medicine and neurophysiology. Look for my guidebook of the Mayo Clinic to hit Amazon.com later in 2012. I'll be famous by then, so be sure to search under "celebrity works."
Wow, I just had my medical CE credits taken care of in one fell swoop. Sending prayers of comfort and healing. Perhaps you and Brenna can party together. She is looking forward to her dental appliance coming off in March and will be having a party serving all things sticky, gooey or otherwise bad for you :) Does the March timeframe work for you too? I'm sure you are ready for improvement ASAP
ReplyDeleteWe love you and are very glad you are finding answers at the Mayo clinic.
Kerry Andy Piper Brenna
I love you and you indeed, are famous. WAKKA WAKKA
ReplyDeleteHey rock star. Well done!! Way to shock the docs who have seen it all. I'm so excited there will be a book about you. Let's get them to work on your code name though. Also: any talk of a made for Television movie? I could see this on the Lifetime Movie Network. Also: one other way you're famous. Chris has told me several times in the last weeks that I never used the term "hot mess" before. And now I use it daily. YOU are to thank for that.
ReplyDeleteWell, I'm sooooo glad that there are finally some doctors on board
with figuring
out how all these issues are related.
By the way: I've been told that popping a few ibuprofen can fix you right up... But I haven't read your chart...
Lyds I'm so sorry to hear about all of your troubles but I'm so glad you are keeping everyone up to date! What an event to go through. I've always loved you and always will love you...you're definitely in my thoughts, now more than ever. Hope you start feeling stronger soon.
ReplyDeleteHey Lydia - Just got caught up on your blog entries; quite the writer you are! I'm so sorry you are going through this, but so glad you are at Mayo. Will be reading your entries and can't wait for the one that says you are going home and feeling strong! xo
ReplyDeleteWell Lyds it never fails you always were the best at everything, including finding the rarest of rare diseases. Like leaving camp weekly with Belinda to get allergy shots, I know there will be a Katies Custard stand of some type waiting for you each week while you take this in stride. You never fail to amaze me in your strength. A calm, collected, and fearless woman you are. I love you!-Diggity!
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