How much more can happen?

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

Cleveland Clinic went well. AND
THERE WAS A SIGN!
FOR ME!
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,
Milly

I love ya, Tomorrow! You're only a Day Away!

Leaving for CLEVELAND today! Going to Cleveland Clinic first thing tomorrow, apt at 8:15 Tilt Table Test after. So my post is going to be in Dysautonomia Awareness blue! It measures blood pressure and heart rate when lying down to standing. Since I have dysautonomia I already know my HR jumps a good 20-30 bpm when changing positions to upright. It'll be interesting to see more concisely what my BP does, and if I have vasovagal syncope (blood pressure drop when lain back down again). I am hoping to get a POTS diagnosis!!!

Here's my doc! and link to her bio/info page. http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=637

I am very hopeful but a bit nervous. Don't want to put all my eggs in one basket mentally. I know already that she's super sweet, kind, and takes her time to explain and answer questions. Things that are very important to me! I'm pretty spoiled on Dr. Awesome being that way-to the max-but I don't find it every day.

Speaking of her, I talked to her Monday and before saying hello she half sang out my name then announced "I have your number memorized! I dont have any of my other patients, though..." Cracked me up! I said I had hers memorized too, to which she replied with a chuckle that she was sure I did. hahahhahahah!

We're leaving in an hour or so, Thanks for praying everyone! The outpouring of love and those prayers is so touching! XOXOXO Milly

PS: I met a new friend with dysautonomia the other day! yay! I love these blessings, praise God!

Updates and Such

Hello.
Well was in ER yesterday.
Lately I've been feeling claustrophobic with it all: to the max. It's hard to explain but I'd covet your prayers, God will understand what you mean!

Anywho I've been missing the newells like crazy ever since they left, I just want to see them!

I'm still writing away, took a bit of a break this week though.

Franciney came over Monday! We watched the equestrian olympics from 08 and Misty!
Of course we ate lotsa ice cream and just were together, always a special time!

Not much else really, please pray though! i need some peace.

Loopy Lass

Greetings && Salutations.

ER again Monday, I got out as soon as I could. Thought I would freak out if I had to stay another minute, VERY tired of being in hospitals.

I was doing better, but new medicine change is giving me vertigo, something I'm not really used to having. Also have the classic left sided weakness since the weekend or earlier, so thats annoying as everytime I get a vertigo spell (every few moments) the numbness gets worse and runs down my face etc. Oh well this too shall pass! I'm just chugging my gatorade, downing my salt, and livin' life. I started school this week, just calculus class left to go: then I'm OFFICIALLY GRADUATED! YAY!

Soooooooooooooooo good to see everyone (:

Ahhh havin' some bad spells, going to sign off. God bless

Special Kind of Friendship

Got to spend time with a friend whom was in intensive therapy with me! She is from Texas and made this vaca to see family in NY, but especially to see two of her friends from therapy.

When you go through something so painful, so incredibly difficult, so unbelievably challenging; you form friendships with those ppl doing it with you like none other. We were all SO different yet we bonded in a special way.

I'm pretty exhausted now, so is she! I need to rest up, meeting a teacher up at school tomorrow to try and finish my third summer course leaving one to repeat.

But I'm so dizzy and weak that even when I'm not doing anything I can hardly focus. AD causes short term memory loss, it's frustrating. I'm surprised I've been able to write, God must know how much I need to do that!

Be Still and Know

Well Hi.
Today has been cool, but I just can't seem to get my heart into anything. Like I just need to stop life and pray for awhile!

The cool part was meeting a new friend with POTS! wooot! Only second one I've ever met with a dysautonomia, and I was her first. It's just a really special thing.

I'm meeting a friend from RND therapy whom I haven't seen since December tomorrow!

I think I'm just restless and I need to quiet my soul and heart. See ya later!

Not Again!!

Apparently I didn't knock on wood when I said it had been eleven whole days since my last day in the hospital. haha just kidding. I ended up in the ER two days ago, and everyone started doubting my sanity in Dr. Awesome's department, hinting that I was playing it up etc. But she took one more look at everything and noted my increasing headaches, full out migraines at this point, and told me, full of emotion, "your symptoms are real. I believe you. I get stressed out just thinking about what you go through from day to day, and you are living it." AWH!!! I love and appreciate her so so much.

My Card. doc called the same day, and was sweet as ever even though he's so busy. We're going to up my metoprolol in two weeks if I feel that it's still helping. And I can get off my sertraline soon, too.

Anyway, I've been writing ALL afternoon and evening! I have 145 double spaced pages on Word so far, and about 23 Chapters plus some extra one pagers. Some of those chapters will either need to be added onto or elongated a little but most of them are good. I updated my table of contents, doubling it, and counted up my pages today which is the first time since 5/22/10, just two months after I started. And here three months later I've doubled it. It's like WOW God, you're really flowing this stuff out because it sure ain't me!

Very excited.

Thank you Lord! You have blessed me with so much, the people in my life are beyond incredible. Thanks for reminding me today to look to you and for giving me intense peace in the ER on Thursday, even when I technically should have been more stressed than ever. I love you! In Jesus' name, Amen.