On ice

How do you filter through all the information that you are confronted with each week? I am on overload.  Let’s just look at one segment of my life and the messages I have had to decipher, filter, and interpret all week.  My health. 

On Wednesday I saw a my new rheumatologist at the U of M.  I was anticipating that she would say, “Yup, looks like you have psoriatic arthritis and you should continue with the treatment you have been using.”  That’s what my rheumatologist in St. Louis said would happen.  It didn’t go that way. 

Instead, she (and her superior) said that I probably don’t have psoriatic arthritis, but more likely fibromyalgia. I should probably discontinue the biologic medication I have been taking and do more exercise.  In fact, do 20 minutes on the elliptical each day before I go on the three-mile walk that I have been doing. (I did mention, by the way, that fatigue is my most prominent symptom, followed by joint pain, and then psoriasis.) 

So, what do I do with that?  The doctor who has been treating me for 18 months says psoriatic arthritis, moderate exercise, prescription NSAIDs, and biologics.  The doc who has known me for twenty minutes says fibromyalgia, fewer meds, more exercise.  

Well, as is my way, I got angry.  I don’t think I have fibromyalgia.  It’s true, I don’t really fit any diagnosis cleanly, but most people with autoimmune disease do not. I don’t look sick at all.  Many people with autoimmune disease do not. I felt a bit like a hypochondriac. I felt dismissed.  I fussed and fumed to my husband and my daughter into the next day. 

But, I agreed that since I am not working at the moment, and I have some time to experiment, I would try discontinuing one medication and adding more exercise. Let’s just see what happens.

 On Thursday I did twenty minutes on the elliptical and went for a three mile walk.  On Friday, I toured a fitness center and swam!  I fell in love and decided I would get a membership because I can do Pilates, yoga, swim, and use weights and cardio machines.  Saturday we sat on bleachers and watched a volleyball game and then stood while we ate burgers with some friends. After that, I went for my typical three mile walk.  

I woke up Sunday  in pain. I struggled to stand through the praise portion of worship because of the amount of pain in my SI joint.  I came home and rested. Yes, I had to rest after church.  Then, I thought a walk might help with the pain.  Wrong.  It got worse.  I spent the rest of the evening on ice.  I woke up this morning, made breakfast for my family, then went right back to the ice.

I would be taking an injection today if I had not agreed to discontinue my biologics.  But I am going to follow the plan.   However, in order to follow the plan, I have to get this pain under control.  So, I am trying to get in to see a chiropractor tomorrow.  Perhaps he can realign my SI and reduce my pain so that I can do more exercise.  

This is a lot of information, isn’t it?  You don’t really want to hear about all my medical stuff, do you?  It’s consuming.  And it’s only one segment of my life.  I have many other things I would like to be spending my time thinking about.  

But today, I am on the couch, on ice.  

I am trying to understand what God has for me in this next chapter of my life.  I really don’t want to spend it on the couch, or in doctors’ offices, or focusing on taking care of myself.  I am trying to be open.  I really wish this illness was in my head.  I really wish that I could just do more exercise, think positive thoughts, and get back to my old self. I don’t really think that is going to work. 

I am frustrated, but I am holding on to the hope that my new self, in this next chapter, whether in pain or not, will be a self that turns her eyes to God, that listens to His truth, and that accepts whatever He has for me. 

And in the mean time, I’ll be sitting here on ice. 

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