Sunday, June 13, 2010

My Life, My Love, My Pain

I know that there are more out there that read this than are actually "following", and I bet that most of you know I have two medical conditions called Fibromyalgia and Vaso-vagal Syncope. That said, you most likely also know my story. But if you don't, I'm going to lay it out for you, in a brief way (hopefully). Because this journey that I have been on with these illnesses is part of who I am. And if you're reading this, I figure that you're entitled to the story. So here goes.



My family and I have been on a two year search for a name to pin to my racing heart that caused a temporary hear murmur, erratic breathing, headaches that last more than two weeks at a time, and for the past eight months, chronic pain piquing at a 9 on a 1 to 10 scale.
After numerous medications, emergency room visits, and specialists around Indy, we got in to see a Cardiologist and a Rheumatologist at Cleveland Clinic in Ohio. They diagnosed me with both Fibromyalgia (the hypersensitivity of the nervous system) and Vaso-Vagal Syncope (where the brain doesn't send the right signals for the governance and stimulation of autonomic systems), which are commonly found in the same patient. I have an aggravated case of both. My nervous system is so ramped up that the extra chemicals I am producing to stay so "alert and on guard" have made my spinal chord fluid imbalanced.

After a month or so back home, happy to at least have names and possible treatments including rehab (both are chronic, lifelong conditions), we found a trained MD specializing in holistic treatments, with a 100% success rate of helping Fibro patients resume a normal life.
This new doctor, Dr. Fetters, was and is quite hopeful with my case. But on some routine blood tests, he found that I have an underlying condition that is making both my Fibro and Syncope worse--and that is hypo-adrenalism and Acidosis. My adrenal glans are completely exhausted and my body is producing too much acid throughout my body. My cortesol levels (which function as a pain reducer, energy booster, and basic bodily engine) are so low as to be almost non-existent. My liver and Kidneys aren't getting enough hormone stimulation to clean the toxin buildup of calcium, magnesium and other minerals, from my blood. That means my blood cells don't have the energy to release toxins, and even if they could, my blood is already so full that it can't handle any more. This means that all other part of my body can't detox either. Instead, the toxins build up, further decreasing my bodies ability to function, and increasing my pain.
In the case of the Fibromyalgia, the pain is worsened by the toxins crystallizing in my muscles, made worse when the already toxin filled blood surges through after any kind of physical activity, depositing more toxins instead of cleaning them away.

With the vaso-vagal syncope, my heart is pumped full of thick, toxin rich blood, which doesn't help it keep a regular rhythm. The adrenal gland isn't helping my body regulate my breathing or heartrate either, which makes the syncope more aggravated than it already is.

Now that all that is said, I have to say this: I'm not worried.

I resigned myself to the fact that God's will is not my own. He has wanted me (or my family, or friends, etc...) to learn something from this. I'm happy to say I have. I have found joy even from within all my pain. I have found peace even when watching the doctor's face crease in worry or bafflement. I have found humour when an ER doctor ushers in 5 medical students to listen to my heart during one of my "episodes".
God's smile is everywhere, even in the hardest of times. He's sitting in the empty chair next to the hospital bed, or on the stairs next to you when you know you can't physically climb them.

I am far more aware of how loving and great our God is. The pain helps me focus on who I am, instead of what's going on around me. It's the most primal of things...pain. It's not an emotion. It's a physical thing, such as hunger, or exhaustion. What is important is the emotion that you use to react to the pain. I have tried my best to choose quiet happiness. If not that, then at least resignation. I have been blessed to feel no anger at all concerning my illness. And for that I am eternally grateful.

The hardest things, I think, are when my friends come up to me and ask "how are you?"...how am I supposed to respond? Most often, it's with an "ok". Because, if I am up and about, and out of the house, I am "ok" (excluding the hospital haha). If they push for more, or I just come out and say "I'm having a rough/bad day", their faces fall. I don't want to go and have them cry over me. I want to go to them and have a normal, fun conversation, reveling in the fact that I am able to leave my bed that day! But the thought that they care enough to ask, and then to want to know the unhappy truths is comforting. It's sometimes hard to know if you are loved by anyone in this world. But With my friends, I do feel loved.
Thank you.

*deep breath* Now that I've gotten the whole "illness/pain" thing out of the way, I can begin to write about my life without you having questions as to why I couldn't leave the house that day, or why I was BACK at the doctors for the third time that week.
Now I can just be me. You know about my dad. You know about my physical condition. You know that I love my siblings and like dancing in the rain, thinking about the cosmos and analyzing the psychology of the world around us.

Now I feel better having revealed a part of me that I don't always share.
And to those of you who are new to this blog and new to me, I thank you for reading. I'm not looking for pity or sorrow. I want merely to show how God can use even hard circumstances for his Glory.

Be well!
-Rae

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