Sunday, April 6, 2014

New Doctor, New Diagnosis???

I believe I mentioned in my posting last month how I was doing pretty well and that I hadn't declined over the winter. Oh, why did I say that? Why? Here I am, a month later, feeling worse than I have in a long time. I'm writing from my "office." Otherwise known as my bed. I suppose this is how many of us who are chronically ill spend a lot of our lives. Forget the advice to only sleep in your bed. I have days where this bed is my dining room, office, and living room. I try to make the best of it. I have my pillows, blankets, medicine, laptop, Kindle, cell phone, remotes, and drinks and snacks nearby. And, oh. My dog. I can't forget her. She's either laying across my legs or on my feet. Occasionally, she goes to the end of the bed where she can look out the window at her enemy...the squirrel (s). Anyway, this is where I am today. Probably for the rest of today. And, if I treat myself right, probably for tomorrow. I believe I've earned this ticket to bed by pretending to be a healthy person. You've done that before too, right? Two days filled with housework, yard work, dinners out and a visit to the Home Show. Yeah, I really did do all of that. And more. Here's what doing all of that has done to me. I have pretty bad pain in my legs and arms. They are weak and they really would rather not do much of anything for me. Lazy, is what they are. With the pain, I have vertigo. I made the mistake of bowing my head to pray in church this morning. Wow! I was moved and I don't think it was the Holy Spirit. The room started spinning and I got all panicky. I left the sanctuary for a bit to go compose myself. After that, the exhaustion set in. Not just tiredness, but pure exhaustion. Once we got home, I went straight to bed. I have no energy. None. When I get like this, at times, I even have trouble eating because of the lack of energy.

Because of my decline, I made the decision to start looking for answers again. I know, it was not that long ago when I said I was done looking. But, I don't want to live like this any longer. I realize that I probably won't be cured, but I'd settle for treatment of my condition. I emailed a mitochondrial disease specialist and was contacted by her office regarding setting up an appointment. I spoke with them for about a half an hour and I was really impressed with how they run their practice. I was told that my symptoms and my family medical history strongly point to mitochondrial disease. When you have an illness that includes three or more body systems, they start to suspect mitochondrial disease. While mito cannot be cured, there are some treatments, usually in the form of vitamin cocktails and supplements. Here's some info on mito: UMDF. It looks like I'll be going to see the specialist next month!! That's unheard of for a specialist of this caliber. She's one of the leading experts in the country. I'll be sure to update my blog once I get back. Prayers would be appreciated.

So, in my last blog posting I used a prompt to help me express myself. Today, I'll do another one.

  "Why do you believe you have this illness? Bad luck, a higher power or something else?"

I believe my illness just happened. Certainly, genetics has something to do with my being sick. But, I don't feel as if it's bad luck, or that God made it happen. However, I'm not one of those people who can say my illness is a gift. If so, this is one gift I'd want to return.  Yes, I've learned things from being sick. I've met some wonderful people I never would have met had I not been ill. But, honestly, I miss how I used to be. But, I don't dwell on that. I'm using my illness to help others. I guess you could say that maybe that's why God hasn't healed me. I'm okay with that. I'm learning to do everything I possibly can to make my life the best it can be.

I hope you are able to find a little sunshine today.

God bless.


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