Living Day to Day

When I was initially told about the lupus, I told my dad that I was not going to live with lupus, but that the disease was going to have to live with me. I didn’t want the disease to slow me down or keep me from doing the things I wanted to do. I was a bit naive then, as day to day life now is very different than it was before. I have a great deal of inflammation in my joints that causes pain and makes it hard to do even (what were once before) easy tasks. Recently there have been other symptoms that have happened as well, things like tremors and spasms in my hand and arm, a burning sensation in the soles of my feet, and a loss of sensation in my fingertips.

My rheumatologist has said that he is not convinced that the lupus is what is causing all of my symptoms and that the symptoms I have are not all together consistent with lupus. He has also said that he has tested me for everything he can think of and has still not found anything particularly outstanding. This is why we have decided to go to Mayo Clinic in Scottsdale, AZ. We are hoping that the doctors there can provide a clearer diagnosis to what’s going on in my body, and specifically that they can find a treatment that will reduce or eliminate the heavy dose of steroids that I have to take each day.

All these things have caused me to live my life day to day, much as we are instructed to in James 4:14, “You do not even know what will happen tomorrow.” This doesn’t mean that I don’t make plans: planning things with family and friends gives me something to look forward to when, at times, I feel as though there is not much for me to enjoy as I used to. It does mean that I have learned to appreciate the days when I can close my fist all the way, or ride my bike on my stationary trainer for and hour, or get through a day without feeling as though I’ve been drained of every last drop of energy. I’ve learned to trust God day by day to provide for me spiritually, emotionally, relationally and financially in a time where these things often seem fleeting and out of reach.

Although my disease still has to live with me and do the things I want to do, I have had to learn to live with my disease as well. The best way that I have learned to do that, is to simply live day to day.

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1 Comment

  1. i follow your progress through lydia or lynne most days and say a prayer for you and your family.you guys are truly an inspiration to us all.there are alot of people out there that could learn alot from you and your family.


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