Monday, February 9, 2009

Catching up

Okay. So, I finally got a wireless connection set up here at my mom's house. Since I'm here 5 days a week, it seems like something I should have, so I can use my laptop. So finally, here I am on my laptop at mom's house.

Here's some correspondence between June and me, which explains where I'm at:

Hi June,

I just wanted to write to you about a couple of things. For one, I wanted to be sure that my doctor's office has faxed blood test results over to you, including my Potassium levels.

Also, I wanted you to know that I've had a definite downturn in my symptoms of instability this week. I haven't been able to work or drive. I've woken up during the night with horrible instability headaches. But mostly, it's my POTS symptoms during the day. I have been so short of breath that I can't even speak a sentence without catching my breath. My heart has been pounding. I've been very dizzy, and restricted mostly to bed. I can't afford to quit my job right now, so I will just keep struggling through. I just wanted you to know where I'm at. The traction helps to some extent. But mostly I need to stay in a horizontal position to keep symptoms at bay.

Basically, I can't wait for my re-fusion surgery. I'm taking my 50,000 units of Vitamin D and extra doses of calcium, so hopefully my bone density will be improved enough by this summer to operate. Is there a certain bone density the doctors are looking for before they do the surgery? I had one DEXA scan done last month, and my next one will be scheduled for late April or early May. I just pray that my bones are strong enough by then to re-operate, because my level of functioning is decreasing again. Thanks so much for your continued support.

Carolyn Richardson

Hi Carolyn,
I have not received recent blood works. The older ones were normal, if I remember correctly.
Fax me the last DEXA. There is no specific number that the doctors are looking for but if there is improvement after a few months of treatment and if the specific bone is strong enough, they might go ahead with the fusion with more treatment after the surgery.
So send me the last result and I'll forward it to Dr. B for his response.

Take care,

So that's great news. I just need to go about getting these test results over to June. I called Loyola, and after much negotiation, they decided they could fax me the test results (But seriously, who has a fax machine???). And clearly, the blood test results I called to get faxed over never did get sent. Great. How come nothing gets done unless you do it yourself? And then why do we always have to use a freaking fax machine?!!!!

Oh well. I have to go to the psychiatrist now. I'll write later, if I survive the day.

Okay....So it's later. I just wanted to add that while I know that I need this huge reconstructive surgery inside my skull and spine, I am scared to death to have it done. To go through that torture again seems like the worst idea I've ever heard of. If it weren't for the promise of that sweet spot and the debilitating and progressive nature of symptoms, I wouldn't consider it. I mean, it is a crazy operation. It's the craziest thing you could ever imagine. This surgery is absolutely nuts. You'd have to be insane to go back and have the surgery redone. Especially when some people having this surgery don't seem to be getting better...or they get better and then worse again (isn't that always the way?). However, I have felt in invasive traction what my body can feel like. Then when they took the weights off, it felt like the weight of the world was crushing me and the feeling of sickness returned to my whole body. So, I know that if this surgery is done exactly right, and they find the sweet spot for my skull, then I will have that light, feeling of relief for all time.

Therefore, I will do anything to get that feeling back. Even have the most insanely ridiculous invasive surgery one can ever have done. Whatever it takes to get my life back. How could I not take that chance, knowing that my quality of life and level of disability for the rest of my life depends on it?