Wednesday, November 10, 2010

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

Tuesday, October 12, 2010

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!

fearlessly in HIM,

Sunday, September 26, 2010


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 :-)

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,

Wednesday, September 15, 2010

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.

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!

Friday, September 3, 2010

Updates and Such

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.

Wednesday, August 25, 2010

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

Tuesday, August 17, 2010

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!

Monday, August 16, 2010

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!

Saturday, August 14, 2010

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.

Wednesday, August 11, 2010

Silver Linings

Well I feel very run down and sick, but the silver lining is I'm pushing myself to get things done in case I'm in the hospital later in the week! haha. I am almost done with the apologetics portion of Bible 12!!! Wooooot! Downside is I don't understand logics! Those more complex truth tables are not getting into my foggy brain! Silver lining: God's got a plan for whether I repeat the whole thing (hey maybe I'm supposed to be in that class!) and if I do my best hey He could choose to honor that and help me get done by, gulp! August 24th.

Dr. C is so excited, yesterday she informed me that it has been ten, and today ELEVEN DAYS! Since I have been in the hospital! Wow!! That's a wonderful feeling, though I hate this inbetween point I'm in where I'm not quite in an episode but not feeling well enough to really enjoy or have as much ability to concentrate and get things done.

I did some exercising today, too, first time since the weekend that I've felt up to it. I <3 Yoga, found some new Poses that I am excited to try out (:
It's something that I can do even when I'm feeling cruddy and is such a great way to strengthen. I just put a Christian spin on it! Because of CI, I definitely find a comfort in working out since thats basically all I did for two months, all day long. I can't believe that all happened sometimes! Six hours a day, plus a good hour at night in the hospital and then 2-3 hours a day plus school plus outpatient sessions when I was discharged! but so worth it, because it tremendously helped everything you'll read about in this new section of my book, I guess its time to post a new one and it fits in here (: How GLAD I am that God has healed this disease! I can't imagine having to deal with it too right now..

A Life in the Day

When you have RND, even the most simple of tasks becomes frustratingly impossible. What is most aggravating is how those around them do not understand why it is so hard, to them “you don’t look sick” and why on earth should sitting in class be so difficult? You’re just sitting right?

Imagine this:

You’re muscles ache so deeply and sharply that they go numb, but you can still feel the pain through the numbness much like those who are paralyzed but retain some feeling. So you’re left with extreme weakness and intense burning pain. Next, cramp up your hand (involuntarily and for long periods of time) into a claw on the end of a flopping clamp of an arm. The whole limb tremors so harshly that you can think of naught else. Now be expected to take notes in government and write an essay in English. With that arm. No I’m not kidding, nor am I done!

Now imagine that awful numbing pain elsewhere, in my case mostly my right hip and leg. Your hip turns into a vice that causes tremors to shoot down your leg and attack your foot, contorting it into unearthly positions that won’t release. (The pain manifests as color and temperature changes. For example, my foot would turn bright orange and go ice cold. Other’s turn purple and swell. Our skin becomes shiny and tight, as well as painful to the slightest touch or breeze.)

Sit on that hip for forty five minutes.

Now do you dare to ask why this isn’t a big deal? Sitting only intensifies the pain; it feels as though its alive, eating at you from the inside out. Imagine a seven out of ten pain on a daily basis, the pain only dipping a little at its best and commonly shooting up higher at times. I forgot to mention the facial tremors and head tics. So while your hand is struggling to come down enough from its place locked against your shoulder as it tremors, dropping pencil after pencil and even sending them flying, try to read notes on the board while your head keeps dropping. I have autonomic dysfunction, though I didn’t know it back then, and head movements like that caused me near syncope every time, doubling the discomfort.

Oops did you forget about your arm? Keep remembering what its doing and the pain you’re in there! Headaches and backaches are also frequent and the pain radiates to every portion of your body. You’re walking down the hall to your next class, walking on the side of your foot straining the tendons in your ankles, but it’s that or lie down all day, and somebody bumps into you with the corner of their book. And you could die because the pain is that bad! Your face goes white and your breathe quickens as you try not to cry. And that person has no clue of the agony he’s just inadvertently put you in.

Soon your foot is jerking so badly that you need to elevate your leg, and tears come to your eyes as your pain intensifies sitting on hard school chairs. Soon you are unable to sit for one more moment without screaming, and you’ve been putting up with a lot so far! So you end up standing on one leg taking notes that way, leaning against a wall, cane, or desk for support. Now try to take notes that way. You may be holding an ice pack on it just to try and get some relief! (An undiagnosed person would try this more, as RND is not really helped by ice or heat packs. Oh and if you aren’t diagnosed, add the stress of tactfully being told you are crazy on top of it all.)

After a few more minutes you are now unable to stand still, so off you go to walking the halls. My struggle was that if I used my wheelchair for my lightheadedness, I was in too much pain too function. But trying to walk all day was almost impossible and zapped all my energy. I could not focus on anything and went from being an A student to unable to finish anything on time, if at all. My teacher’s were as understanding as they could be. Duff would run to get my chair when I fell one too many times that day. That is another thing that one with severe RND must deal with, the collapsing due to atrophied muscles and fatigued joints. I collapsed over a dozen times on a daily basis, but was treated with respect and love. Not all are so fortunate. Many are held to the same standards as the other students by teachers and therefore at an extremely unfair advantage. Some have to crawl from class to class. Others try to soften chairs. Many are bullied, shoved, and pushed down. I would like to believe that they know not how amazingly painful their actions are.

I write this not so that you will feel sorry for RND sufferers, but so that you will try to understand. Because I do realize that unless it’s something you have experienced, you will never be able to truly grasp the magnitude of its affect on your life. Please, don’t ask questions the moment we meet. Please don’t stare at a movement disorder. Please don’t pity, but please do pray!

Tuesday, August 10, 2010


Just feeling cruddy today! Last night I realized once again that sometimes I just take others' sorrows so much to heart, with those that I care so so deeply about anyway.

And right now I feel like my own heartaches are enough to be stressful. I did talk to Dr. Awesome today, she always makes me feel so supported but then I just feel like crying because I know how much she cares and is trying to work things out for me, and that not much is getting better.

The new med she and my cardiologist started me on, a beta blocker called metoprolol, is helping though. I'm really crashing right now because I over did it past five days, but it's really helped with my palps. The trick is to not letting it drop my BP too low.

Anyway, I am at that super annoying point where I am not quite ER material but feeling just miserable enough that I can't do anything. I want it to go one way or the other! particularly up =]

I. Miss. APRYL! I need to ride her really ride before I go stir crazy!

I guess feeling down comes with the territory. Balance...Gotta Balance!

Wednesday, July 28, 2010

One of Those Days

Today is just a downright cruddy day!

I mixed up my counseling session time, and had to miss it.
Two of my favorite people in this world, a couple, is leaving with their family to exactly halfway around the world as missionaries. Been crying off and on all day! Everytime I think about it I just lose it, love them so much. Those two taught me more about living life loud, boldness in Christ, and just trusting God's plan and going for it than any other.

I feel so trapped at times, my friends are moving on and starting their lives and I am still in the same place with no end in sight. Don't worry, I've still got this incredibly unnatural peace about it all!


Another chapter. it's unfinished.

Unexplainable Peace

May 31, 2010 Journal

My heart aches to ride. It doesn't always seem fair, my friends are planning their summers and going about their lives while mine seems to be crawling along behind theirs, moving forward but continuously being left behind. Many weeks I cannot even venture out of my house without heavily paying for it. Really not feeling well tonight, I hate lying still and feeling every single odd rhythm my heart conjures up and feeling my pulse pumping hard in a dozen spots at once. Having a dysautonomia makes your brain feel like it is going to fly out of your head. There is no easy way to describe how downright odd it makes you feel. And when you are trying to sleep, you notice so acutely just how uncomfortable the symptoms are.

So I turn to riding in my thoughts. I am so grateful that I can remember so well what it feels like to really ride. And so I dream my agony away…

I feel Apryl pulling against my hands, anxious to explode forward. The supple leather runs through my thin fingers. I squeeze lightly, first with my right fingers then with my left. She responds by rounding her neck and back and dropping her head in submission, thus using her body and relaxing. I shorten my reins a touch more and all at once I kiss and squeeze my legs against her sides, without bothering to follow up with a second squeeze from one leg to signal which lead I anted, as we were on a straight path down the center field. As I expected, she picks up her favorite lead, the left. I lifted my weight slightly out of my tack, adjusting to the new center of gravity as Apryl's delicate legs turn into rods of iron, punching the ground. If I close my eyes, an breathe deeply I can feel her bounding forward, all the tiem asking for more rein. I can hear the wind whistling in my ears. Apryl feels as though she would go on and on without stopping, carrying me anywhere I pleased: so long as we're galloping! The feeling in your hands when a horses is running with all their might against them is electric, and it makes one feel as though the whole earth is sweeping you along in a wild embrace. I smile, and let out my hands another inch..."come on girl!"

Tears were streaming down my face. I wanted to ride again, myself. Not watch others or relive old dreams. But old dreams are all that I have, and making the best of them is the only option. My second choice is one I won't even consider: a life of self pity and bitterness. I would rather live a sick and slow life than a healthy and angry one. I know many people who appear as though they should be happy, yet they are miserable. However many chronically ill people seem to be happy, or rather have joy. Happiness is wrapped in material possessions and the satisfying of self. Joy is the strength inside to always find the silver lining, to always love your friends and just have a peace in your heart. Joy is not putting a phony smile on and grinning and bearing it, joy allows for pain where happiness only gives room for perfection.

That night, I allowed myself to question and be upset. Because I HAVE lost a lot, and I'm not going to pretend that life is always good and always perfect. But I don't have a desire for perfection, if I can say I've lived a life sold out to my King and had days filled with laughter and friendship, then I can say that I have lived a fulfilled life. I don't need things to be easy to have joy. I am often asked if I'm really this "happy" or if my smile is "for real". Whenever I am asked this, I find myself gazing off into the distance into the proverbial eyes of my Savior and smiling inside, because I have the most intense peace no matter where I am. Sometimes that peace feels buried beyond recovery, but I soon see that the bulb lighting it up had gone out and it was not out of reach. It is an unexplainable peace, one that tells me each and every day that this is not all that God has in store for me, that this is not where my story ends. It's a peace that whispers hope and encouragement, and never tells me I can't. This feeling is combined with the knowledge that one day I will have no more sickness, no more handicaps. Whether that is in Heaven or on this earth I do not know, but either way I know that His plan is so perfect, and God has truly made it easy for me to accept where I am at but to also look forward with all the hope of the future. My fight is not over, and while I may need to sit in the corner to be built up again, I am not down for the count. This isn't me talking brave or putting on a tough girl front, this is I expressing my deepest heart song. The One who is in there singing it does not make mistakes and keeps my spirit alive each and every time I breathe.

I know that this is not easily explained or understood, but honestly I am ok with people not understanding it because it does not matter what any one thinks. It all comes down to my heart and what I know is in it. I would love for everyone in my life to understand but I know that it is only something that comes through the Refiner's fire. I may not be healthy, but I feel so well. So complete, so loved, so fulfilled. God has led some amazing people into my life and really ministered to them through me, and here is to hoping that I didn't mess anything up. But when we are striving to do His well, I don’t think we can mess it up! What a comfort that is!

Truly, being sick has blessed me more than if I had been well, not because God made me sick but because He can use any situation for His glory, and make an amazing out come with it. I wish you could see the people that I have met and interact with them feeling the bond that we have because of what we have gone through together, or because of similar experiences. Until you have felt that

Wednesday, July 21, 2010

my POTS stole my SPOONS!

Hello! Sorry that it has been so long.

I'm still so grateful to have no RND anymore!! It's really a bugger!

Fighting my Autonomic Dysfunction/borderline POTS is plenty, thank you ;)
This summer, I have been in the hospital every week, expect for last week or two. Get about 2 L IVF and toridol. This time I got a reglan infusion, along with benadryl as a precaution.

Just can't seem to keep my blood volume up, and since the Sertraline (Zoloft) is only making my numbers look good without fixing the problem, I'm being taken off it. I hate being on it, I know I'm not on it for depression but, eh I dunno.

Currently on: steroid nose spray (found out i have rhinusinusitis. yet another way I'm a mystery, my allergy tests looked normal yet one look in my nose from My allergy specialist and I get an ooohhh yeah... haha!), flonase, fludicort/florinef/fludicortizone, sertraline, meclizine. So not too bad!

Just getting worse and worse headaches with these episodes, and I hate that I'm having them SO regularly. But I'll keep going to the ER if it will give me another week! I've been admitted twice this summer, too. A three day and an overnighter, so again not to bad.

Aside from all that, it's been a wonderful summer so far!! One phrase: CREATION FEST 2010!

I'm also still working VERY hard on my book!!! About 20 chapters so far! I am thinking I'll post some of it here, let me know what you think. (: Since I didn't tell too much about my RND healing I'll post that chapter first.

Still using a wheelchair anytime I go out, trying to get things rolling through OVR to get my own. My dear friend, whom I have dubbed KS (Kindred Spirit. And I'm her kiddo!) has let me use her late father's so generously! It's time to give it back though.

And speaking of KS, spending Fri-Sun at her place!! Wooooooot!! We both need this I think. Coloring, adding more stickers to our canes, hanging out with the horses, and start gazing are in order I think (: We'll never grow up, haha!

Not much more to say, I'll leave you with a piece from my book. Oh, did I tell you? God named it: Trading Sorrows

Makes it seem so much more real! Crazy!

The Overflowing Cup

Reflex Neurovascular Dystrophy. Reflex Sympathetic Dystrophy. Complex Regional Pain Syndrome Types 1 and 2. Amplified Musculoskeletal Pain.
They all mean the same thing; please don't touch me because everything hurts. RND means even a hug is uncomfortable. That sitting in class is unbearable during a flare because the knives and burning in your affected limb makes you feel like screaming and running away, except if you get bad enough your muscles degrade and you can't run. Oh well, it was a thought anyway right? RND took away my ability to do the things I love. It took the ability to have a normal time with my senior class. It took my ability to ride horses. It eventually stole my hands. No more playing my scuffed up Baldwin for hours, or completing tests on time if I completed them at all.
But if I'm going to tell you all of the bad things about RND, I have to tell you the blessings that have come out of it. The first blessing was the sense of community I felt. Anybody who has had longstanding undiagnosed problems can tell you the joy of being given the name of it, and with that name comes the ability to find others just like you online. Upon finding those people, one can share joy and sorrows. They can give you tips on coping, and you can share your story. Once I was admitted to the therapy hospital, I was introduced to easily a dozen friends, the majority of whom I keep in close contact with.
These friends have given me the opportunity to be distracted from my own problems and to make a difference in their lives, like they do in mine. I cannot imagine life without them! I especially cannot imagine life without the crazy but wonderful Coordinator at the therapy hospital. I believe her exact words on this subject was, "talk about RND being a mixed blessing, huh?"
My point in telling you all this, is God knows what He is doing. He took an incredibly frustrating situation and turned it into some joyous memories and amazing relationships. I'll never forget the times I had at CI, chilling with my friends there, going to the cafeteria, and joking around about everything under the sun: except for RND. I hope that I have managed to touch their lives as much as they have mine, and RND turned out to be a very small price to pay.
One Wednesday I went to bed around 9:30 like I always do. I fell asleep after battling my tremors, the price I pay for not taking a muscle relaxant every night in an effort to save them for really bad evenings. I woke up hours later, and felt like something was different. God spoke to my heart and let me know that He was taking my RND. It was not completely gone, but as though it was slipping away. I sat straight up, eyes widening at the ease in which I did so. I went into the bathroom and stood in front of the mirror in shock, was my RND really being healed? I just had this feeling in my spirit, and I woke up my parents. Again I'm sure I scared them, as my unspecified Autonomic Dysfunction has not been doing well and I require saline from time to time. "I think God is healing my RND!" They were awake pretty quickly, and they came down on the floor with me, and dad prayed over me. We grew very emotional knowing that this monster was releasing its hold on my sympathetic nervous system.
The next day, I just told everyone what was happening. It was so exciting to feel my body be released more and more. I was able to walk as fast as my lightheaded brain would allow, and my limp was gone. One of the most exciting things to show people was the lack of my tremors. My hands, normally curled against my side, were open and relaxed. My feet pointed straight ahead instead of, as I told my dad, making me look like I was going in two directions at once!
Today as I sit here typing, I realize how truly gone it is. The deep, numbing ache hasn't returned and I know it never will. Sometimes it is mentally hard to adjust to a healing, you forget that you don't have to take certain medicines anymore until you have the bottle in your hand, or you wake up tense, expecting a certain symptom to be flaring. After awhile, however, you totally forget and move on. But it is so important to reflect and be amazed at how far you have come, not because of something you did but because of The Great Physician. Miracles do happen!

Saturday, May 29, 2010

Major Updates: MORE MIRACLES!

Long story short:
Collapsed after school in august with intense weakness, tremors etc.
In hospital for four days. No answers. Told I was going to have to live with it, because I was fine. and to go to school the next day. I couldn't walk

So I bought a cane and went to school, using a wheelchair often.

Was finally diagnosed with Reflex Neurovascular Dystrophy by Dr. Awesome ;) in September
Got into therapy in November. Did outpatient therapy half of sept and all of oct

several weeks ago, all my color changes tremors pain weakness etc: Gone. So many things. touchign my muscles used to hurt and now I feel nothing.

I simply woke up at 4am on a Thurs and knew. Just totally knew it was going away.

I was diagnosed with autonomic dysfunction, possibly POTS, in January.

Battling that, using a wheelchair anytime I go anywhere for any sort of distance, standing makes me sick. I have flares 4 up to a month and never seem to fully recover.

But God is good. I'll write more details about all this soon! (: