Thursday, June 4, 2009

Health History/The Long Boring Edition

Totally fake smile because sometimes we have to fake it til we make it.The Tilt Table Test is the standard for diagnosing NCS
I find it to be cruel and unusual punishment as they make you faint. I have had this test done twice and one of my Docs wants me to have another one. Umm no thanks.



I've been asked some questions about the nature of my illness so here is a not so brief explanation.


Let' start at the very beginning, not really I just like how it sounded. When I was 21 on my mission, I was diagnosed with Hyperparathyroidism. I had a tumor on my parathyroid gland. I didn't even know I had a parathyroid gland until they discovered the growth. This disease is fatal if left untreated. It is extremely rare especially in a 21 year old. I had to have surgery to have it removed and as it is so rare and usually found in geriatric patients there are not many surgeons that have performed this micro-surgery. The real problem with Hyperparathyroidism is the havoc it wreaks on your body. It causes loss of bone density, tooth decay and kidney problems. It causes the body to rapidly age and this is why I have many of the problems I have today. My body thinks it is 87 instead of 47.

Five years ago I was diagnosed with Neurocardiogenic Syncope and Postural Orthostatic Tachycardia Syndrome. It is a condition where your autonomic nervous system is failing. There is a cardiac component as well. Upon standing my blood pressure drops and so I don't get blood to my heart and head. Fainting is the bodies way of protecting you from a stroke. I started fainting at 18 and I thought everyone saw stars when they bent over. My neurologist said,"I'm sorry, this is a miserable disease." Again it is rare and found mainly in the geriatric crowd. Lucky me. My internist says that the only patients she has with this condition are in their 80's. Four years ago I saw a Dr at UCLA that treats patients with NCS. I got tired of being her guinea pig and so I quit going there. My current neurologist who is the Head of Neurology and is a Professor at a prestigious medical school has never treated a patient with this disease. There is no cure and I have developed allergies and intolerance to many of the meds they use to treat this condition. I have good days and bad. Chronic illness stinks. I'm over it. I mourn the loss of freedom, health and being actively involved with my family. I use my walker and wheelchair as needed. I can't tolerate standing for too long so depending on the day I pick my mode of transportation. I feel fine when I am horizontal it is the vertical I can't handle.I require a high sodium diet, lots of fluids, someone to fan me and feed me grapes.

No, this is not me but maybe once I'm totally gray I can model for pharmaceutical companies. I'd be good at it. Last week I received my first annual Reclast infusion at an infusion center. I have osteoporosis and have developed an allergy to the typical pill form meds. Next I tried the quarterly IV Boniva. My veins are crap and so for the last six months I have not received a full dose as my veins have blown. Since I have been falling down on the job, so to speak, My Dr recommended I try this route. It was a piece of cake. Here I am sitting in my recliner getting my infusion. It took about a half hour an hour if you count paperwork, prep, etc.

It left a nasty taste in my mouth, for real. Kind of lemon, citrus and garlic. Weird.

The best part is that I don't have to do it again until next year.
So that is my story in a nutshell albeit a large nutshell. See what I mean about a rubber room? I promise a bunch of nonsense tomorrow. These health posts are a big fat yawn. Speaking of big fat I have gained some weight. About 10 pounds more or less, depends on the day but it is a good thing. Ten more and I will be sitting pretty or at least more comfortably. I need some cushion in my trunk.

27 comments:

Liz said...

Well, if you have to be sick you at least you look good doing it!! And you have a great attitude!! I could send you some of the junk in my trunk if you need extra padding. Kind of like giving you a kidney or something. I'm altruistic like that.

tawnya said...

WAIT! You've gained 10 pounds? You didn't tell me that. YAYAYAYAYAYAYAYA!!!! I'm so happy for you!

Brigitta said...

Thanks for the update, been wondering what your story was for a while now.
That seriously stinks, but you have such a good attitude about things. I love how you still find humor and fashion in all things. I can imagine that living with something for so long is tiring and drainging and that you have had to learn to live life and not let the illnesses take that away from you. I think a lot of people could learn from you. Good job on the weight gain.

Heidiram said...

O.K. I just have to say you have the most AH-Mazing attitude in the planet.

Christie said...

That's it, that's what's happened. I've gained sympathy weight FOR YOU! I'm such a good friend like that.

Ilene said...

Yay for the weight! You and Laura need to get together and add some junk to your trunks.

I'm sorry for all the crappy health drama you have to go through. You handle your health challenges so beautifully. I would be such a grump ALL of the time. I admire your great attitude!

Annemarie said...

The pic of the IV is grossing me out.
Having said that...you ROCK! You do handle this mess with patience and great fashion.

the wrath of khandrea said...

"i feel fine when i am horizontal"

and I'M the hooker??


congrats on the weight gain!

Tristan said...

Diane, you are simply amazing! You have such a good attitude about all this! I can only hope to handle my own trails with as much grace and postivity (is that a word?) as you do!

Glad to hear about the 10 pounds! It feels weird applauding weight gain, but in your case we do!

Anna said...

Hi, I'm here by way of wrathofkhandrea. She told me that you are amazing and I have to agree. If you really need more weight I'm happy to give you all you need.

queenieweenie said...

My temporary "stint" as someone with chronic illness (temporary chronic illness-that would be an oxymoron, huh) has given me a newfound appreciation for those who have to go through life feeling like crap. You are such a joyful person that if you weren't so damn skinny and occasionally in a wheelchair-you would NEVER know. Thinking of you and hoping you can find a med combo that works for you.

Loves.

Hazen5 said...

Diane, I am a pretty good wheel chair pusher. If you ever need a ride to appointments or anything let me know, I'd be happy to push you along!

Jessica said...

All this just makes me think you are more awesome than ever.

(Thanks for sharing...I've long wanted details.)

Hollyween said...

Andrea's comment is funny.

I read every word of this and I am both confused and awed at how incredibly awesome and optomistic you are. I'm happy to know you!

And I don't know how you DO IT. I loved the details and getting to learn more about it. I plan on googling for even more info because I'm crazy like that.

Robin said...

Thanks for sharing this with us. I am glad to finally know what is WRONG with you. You have an amazing attitude and you explain your situation well.

Having my gallbladder out turned me into a complete baby and oh, how I whined and whined. It was pathetic because, really, it was nothing at all. But it opened my eyes to the process of pain and gave me a 3 day glimpse into illness - and I knew it would end. I admire you Diane.

Kimberly said...

Your grace and humor are amazing. Thanks for sharing the dirty details. I wish I could donate my extra pounds to you!

annie said...

You are the best natured chronically ill person I have ever known! Your body may have let you down however, you are always so fun to be around. Your blog always makes me smile!
Love to you
Annie

Emily said...

Wow. Ditto what Robin said, now I know what is WRONG with you. ;-)

My sympathies. I was just diagnosed with a kind of tachycardia that requires I take a beta blocker. I thought that was weird for a woman my age, I though beta blockers were for geriatric folks. Think again, I guess.

You are awesome, darling, peppy and witty. I think you fool a lot of people.

xo

Bridget said...

I love Andrea's comment. As usual.

So sorry you have had to deal with all of that. Yikes. And that it started so young. You handle it beautifully. And of course very fashionably as well.

Paige said...

Diane, I really appreciate the boring health history because I care about you and want to know. Your body may think it's 87 but the mirror does not. You are gorgeous. I'm still worried about the grey hair, but we'll discuss. I want a picture of your butt.

Shannan said...

Sista-

That is something that no one would wish on their worse enemy. You are a fighting champ and give me hope as I deal with my ongoing illness.

Cheers to you!

Lisa-Marie said...

You read my mind. Just yesterday, I kid you not, I was getting ready and you popped into my head. I was thinking about your health and wondering about the details. Wow. One of us needs to be making the millions doing psychic work!

I'm glad you shared. You are amazing and have such a great attitude. You rock the new chair. You need to get it blinged out!

Jenibelle said...

Dang girl! You and my Byron would make quite a pair. If there's an illness out there that's rare you two have managed to find them.

I am happy you've gained weight, but my utterly selfless offer of a fat transplant stands. (can thinking good thoughts keep you from hell?)

Jenibelle said...

I want to have people congratulate me on weight gain. A girl can dream.

Sally said...

I am glad you posted this health history. I know there are many things you didn't include. You should, because we all care about you and want to know.

I admire you. Your attitude is positive and spunky. I can see that you find and appreciate joy in your life instead of focusing on your struggles. That is a hard thing to do.

The Family Johnson said...

I'm with Liz....I can send you all the padding you need! On a serious note...Diane you are an inspiration to me. When I complain about the silly little trial in my life I think of you and it helps me to buck up and have a better outlook on life! You are a wonderful example to all! I love you!

Lauren in GA said...

What are you talking about. This was not boring at. all.

Thank you for all of the details. I am nosy...er...I mean curious...