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.