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!