Lotsa Updates

Ahhh I am sorry for neglecting you, old blog!

I'll have to back up to three weeks ago, I got super numb after PT, couldn't move or talk or anything. Just a really bad episode like I haven't had in some time.

So three day stay, potassium B12 protein was all low, and my iron was low last time we checked it, so on iron and b12 and got potass in the hospital, pills not a drip, and did really well after that third day. the next week after PT i lost feeling in my throat and it was just really weak and I choked and coughed on everything, five days of that I lost 7 lbs, it finally started working again and I'm up a few lbs.

Monday, THREE WHOLE WEEKS after last hospital run, I had another episode. I was in PT but it had been coming for days, and did really well I went in talking and stayed that way, 2 boluses of IVF and was put on oxygen. O's really helped clear my head and with migraine, since I don't have enough blood, and not all that gets up to my brain and heart, saturating it with oxygen can make what little is making it up there more efficient since my heart isn't getting it done.

Doing fine now. Dr. Awesome wants me on a walking program, going up in 5 min incriments, but getting to 10 is like torture so not sure how its going to work but I promised I'id try.

my first dysautie friend is coming here at 1 or 2, yay! :)

OH! and its RND Awareness Month! Wearing Red and Orange all month to support! Let me know if you are doing it too, so many are its really touching! Even though I don't have RND anymore, So many of my friends do. I wear the colors to support what they are going through and what I went through!

NOV 4 was my one year anniversary of being inpatient at CI!!!!

And PTL, remember when insurance kicked me out of CI too early??? and I was just so upset, but God had a reason. I met two girls taht I would NOT have met, and K just led B to Christ, after the two of us were witnessing to her for months. God I understand now,forgive my stressed out self at that time! I am finally able to let that hard day go, and weeks, and months, go. It was worth it!


STay faithful in Him!
love, milly

Beautiful Night

I glance out the window and see a beautiful crescent moon hanging from the trembling branches of the maple tree. its the shape of the marking on apryl's forehead, and it makes me feel peaceful to see it up in the sky with beautiful shades of blue behind it.

Today I started PT again, and it was strange to wake up before the sun to get ready to leave. I had that all to familiar routine down pat, getting up around six and being at the hospital at seven, hanging out eating breakfast in the empty cafeteria and with Beth until nine.

That was so so hard, to sit all day on hard waiting room chairs between sessions from 9-4, then wait 30-45 min in the lobby for dad to get out of work and ride the bus back to our parked truck waiting to take us home. Then dinner, and a few more hours of therapy.

I still can't believe I did that, it was incredibly taxing and overwhelming and stressful. All because my insurance didn't want to cover what I needed. But you know, I would never have become such dear friends with Beth had that all not happened, nor met a half dozen ppl I considered to be some of my best friends!

pretty crazy. those days will always be on my heart, and remind me that I CAN DO THIS.

Been thinking about it all a lot lately, RND therapy I mean, esp not that this is the second time I'm having to relearn consistant walking, only this time two months in PT won't do the trick.

It went well, they were super understanding of how I couldn't overdue and how each day is very different. We did epley maneuvers for vertigo and I think it helped!

my bestie, my kindred spirit, is coming friday hopefully to see secretariat and spend some time with me. <3 *wordless happy sighs*

going to copy this into my caringbridge now, then go lie down on the couch!
xoxox

fearlessly in HIM,
milly

Music!

I LOVE music.

Like a lot. Like more than should be legal.

New CDs!

The Alter and the Door - Casting Crowns *$5 sale*

Fall 2009 Sampler - has Glow by Britt Nicole and Before the Morning by Josh Wilson, plus 14 other tracks! *free*

Mikeschair - MIKESCHAIR *$12*

Spent $18 saved $14! So I'm a happy kid!

I'm off to sleep and play them now :-)

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