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!