So she dances....

...okay, so I'm not dancing. But I do currently have Josh Groban promenading across my mind belting So she danceeeeessssss...... :D

I'm waiting. We had a bunch of blood work and a chest CT on Friday, so now we wait. I have a pretty good feeling that, regardless of the results, we will pursue treatment for Myasthenia Gravis. The only thing I really wanna know is what the CT shows of my thymus gland.

If the thymus gland is normal, we can pursue minimally invasive surgical techniques like the da vinci system or a transcervical thymectomy which only has one small incision in the neck. If the CT shows the presence of a thymoma or an enlarged thymus, they will have to crack open the sternum to take it out. Yes, this is the same procedure they utilize for open heart surgeries. Honestly, I don't know if I have the fortitude or emotional strength to undergo this type of surgery right now. So we pray that a minimally invasive technique can be utilized.

I spoke to a friend today from my stake. She is an older lady who has been suffering from Fibromyalgia for 14 years now. She is in a constant state of pain--it ranges from mild to severe, but she is always hurting. So I realized that while this thing I have is awful and has turned my life upside down and inside out, it could be much worse...I could have to live with pain on top of the imposed disabilities.

Thanks for the perspective.

Check this out.

Okay--deteriorating health has given me lots of internet time...and I've started checking out other blogs. I love finding crafty people...and those who are just cool. One of them is this one: Mormon Mommy Blogs. She has a Giveaway this weekend and you should check it out by clicking here.

Myasthenia Gravis...

...is what they think it is. They did another nerve conduction study and EMG (5th one in 9 months and it's a very unpleasant test involving needles in muscles) and upon repetitive stimulation, my muscles showed a decreased response over time. This, along with a good, old-fashioned hunch has led Dr. Niceness to believe I may have Myasthenia Gravis. He's not sure, so lots of tests and CT scans have been ordered to verify.

He said that in only 75% of cases does the patient actually have the positive antibody for MG that will show up in the bloodwork. But even if the antibody doesn't show up, he thinks this is still my poison--based on my history and the EMG results from tuesday.

Good news: He thinks that I may live an almost normal life (he just doesn't realize I WILL live a completely normal life) based on my age, etc...

Bad news: He thinks I may be ineligible for treatment via IVIG (by far the easiest treatment ) because my elevated Ig-A antibody levels indicate that I'm extremely susceptible to a severe reaction. This means that I can only be treated with Prednisone or Plasmapheresis or both depending on which one works.

Next step: beyond the blood work to verify (or not) that Myasthenia Gravis (MG) is my particular autoimmune disorder, I will have a CT scan of my chest to determine the presence of a thymoma.

Dr. Niceness noticed that in the rare cases he found where MG and dysautonomic neuropathy (my earlier diagnosed problem) was present together, removal of the thymus gland was very effective in helping put the disorder into a state of remission, if you will.

So--now we wait for the tests and results. Then we try to mix and match treatments until we find something effective for me because these steroids are not very effective and they are too harmful for me to continue taking for very much longer.

....

Well, they don't know. Surprise. No one knows. However, Dr. Niceness is gonna think about it and review my medical records I left with him and call me tomorrow (before he leaves for his vacation to the Bahamas :)

He has a couple ideas...but I'd hate for him to be right, so we'll just wait for the call...

Shands

I'm nervous. I have my long-awaited appointment with a neuromuscular specialist at Shands on Tuesday...and so much rides on it.

What if they don't know? Then what? What if they say there's nothing more to be done? Am I to just exist in this semi-functional state until I die?

I'm currently taking 60 mg of Prednisone every day and this mega-dose of steroids renders me just barely functional each day. I'm fat and ugly and getting bigger every day. But if I miss a dose, it only takes me 3 or 4 hours to feel the weakness spread...so I must need it. What if there's no alternative to taking the Prednisone? I just take it for a year or two until it destroys my body, then wait to die?

I'm so anxious. For weeks, I've been excited about seeing the specialist and finally finding out what's wrong...but I suppose I need not get my hopes up, for finding out that they don't know might throw me into a depression. And I don't have a history with depression, so getting past it might be interesting.

The way things are...

...is not always the way they should be.

When you're sick, and you take medicine, you're supposed to feel better, right? Not always.

When you sleep at night, the next day you should feel rested...but sometimes you don't.

Coming home from a weekend at the beach should leave you refreshed--but when you're sick, you just feel wiped out.

Life isn't fair.

I had a tough day health-wise. I just felt so weak. I mean, I took my steroids, I slept last night, I should've woken up ready for my day today preparing for girls' camp next week...but I was just weak and wiped out all day. And there was nothing I could do about it. So, I just did what I could and didn't worry about the rest. But that doesn't make it easy.

But the camp certification went well--my YCLs this year are amazing and I can't wait for camp! The pizza was good. And I love my calling...there isn't anything I'd rather be doing right now. So, I'm happy. Life is good. It still isn't fair, but it is good.