Saturday, September 25, 2010

How much more can happen?

in just a few weeks?
I better start at the beginning.

Cleveland Clinic went well. AND
I almost CRIED.

I had a positive tilt table test, meaning then lie you flat on a table with two BP cuffs and a twelve lead heart monitor then go up and up but degrees. Misery! Left side went numb couldn't stand on it. You're strapped in and they said they stop once I couldn't stand on my own but they didn't haha. But I didn't mind bc like I told her when she almost stopped it because I couldn't talk to her right away, after I got my breathe back I said "I came a LONG way for this test.." and I didn't mean in just miles from here to Cleve!!!

So that was suppperrr exciting to get my first positive test in a LONG time, only like the second one ever haha!

We liked Dr Fouad! She's different, but very knowledgeable. She just automatically knew my dysautonomia and didn't look at me like I was bonkers when she heard about them all.

She had me come back the next day for an autonomic reflex test and a blood volume test. BV was first and I get really sick during it, they took a lotta blood, and we just heard yesterday that my BV is low! I have low iron and low red blood cells, but at ER thursday night they said I wasn't anemic? So I'm confused. We'll get full results next wk.

Auto. Refl. was negative, which made Dr Fouad VERY happy, it was sweet. Said that made a much better Dx for me. No nerve damage/malfunction/etc its all circulatory.

So wow two positive tests in two days when I've had six years of negatives! Only positive I can ever think of was pulmonary function test when they found my asthma. (which was healed, full story written out in my first post).

IDK what we're doing yet, everyone here is SO CONFUSED about what the heck that BVT means, bc its something Dr Fouad created and was confirmed into the FDA in '98

Go Dr Fouad!!!

anyway so CC is like the only place that does it that I know of, though some others like Mayo or whatever may. Not sure. That means though that nobody gets the test and looks at you like your bonkers when you say you have a low blood volume, because to them there is no really good way to see someones BV!

But thats ok, can't wait til we have results in hand and docs can get them via fax hopefully, and then get a treatment plan going. if there is one!

I've just been feeling really tense and disconcerted with everyone telling me something different. I was very happy to hear that the BVT came in positive for low BV but now its frustrating. and I just dont know I feel off and a bit scared that its always going to be this confusing. BUT last night God gave me a blessing, and it was at 4:37! He always does things around four or four thirty! I woke up and just felt really good, and stood up in faith like a "normal" person and fell down, so I knew it wasn't a healing but I told him I accepted anything he was doing, and would welcome another! but after I got up I was able to walk more easily and didn't feel dizzy and it was just stinkin' amazing! Symptoms came back slowly but I didn't mind it was amazing.

Wrote an email to Dr. Awesome in order to just get out my thoughts on everything and send a link I found on the BVT. She's great at making sure she listens to how I'm feeling, mentally and physically! It's been SUCH a strange week! Some good, some bad, but I'm just grateful for any and all action!

Better go get breakfast and some medicine in me, didn't notice how late it was!

Love in Him,