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I have a confession

Rare Disease

I have a confession.

I’ve been advocating and writing about rare disease which makes total sense since Case’s condition is, in fact, what they call ultra rare. But lately, I feel like I’ve been hiding something. Not on purpose, it seemed like it was a temporary thing at first, it was really just nobody’s business and in the grand scheme of things, it did not approach any level of importance compared to Case’s challenges. But as things progress and it consumes bits and pieces of my life, it has felt like keeping a secret to write and write but never mention it.

I have a rare disease. It will not kill me. It is not anywhere on the plane of the challenges faced by Case and other children with special needs, but it is there. In fact, I did not even know it was considered a rare disease until I delved deeper into advocacy and kept seeing it mentioned.

I have something called CRPS or Chronic Regional Pain Syndrome in my left hand and arm. It was caused by a wrist sprain in July 2010 and it continued to get worse until it was diagnosed later that year. CRPS is a chronic pain condition that can affect any area of the body, but often affects an arm or a leg. Doctors aren’t sure what causes it, but they suspect it involves overactivity of the sympathetic nervous system.

For me, it involves numbness, pain, itching, twitching, soreness, dystonia (involuntary movements), extreme sensitivity, coldness at times then swelling and heat at others. Medication helps. Sometimes. Nerve blocks help. Sometimes. But then medications and procedures have their own side effects.

If my hand is in a pocket, underneath my armpit, or wearing a glove, now you know why. If I’m rubbing my hand or arm, now you know it is because it hurts, it itches, or is numb. I have trouble with opening things. I drop things. I compensate in driving, opening doors and other tasks with my knee, foot, or right arm. I had to drop my entire workout regimen two years ago and have yet to return. I have to tell my kids not to grab my hand and often just give in. They are just kids and what do they know of pain?

Case wants to be carried, his chair needs to be carried and as I’ve said before, there is no “carry fairy” in our life so of course, that is what I do. Typing is the worst, so writing, my joy, is often slow, error ridden, and often has painful repercussions as well. But it will not kill me. So … what?

Over the last two years, I’ve had multiple stellate ganglion blocks, doctor appointments, medication changes, and hand therapy visits. I’ve switched medications because of falling asleep. I’ve put on significant weight and I have side effects. My left arm does not feel as if it is part of the same body as the rest of me. But I am somewhat at a loss. While I have seen some improvement since I was first diagnosed, it remains a part of my life every single day.

This week felt burdensome, which is why I felt compelled to write, to connect. My pain doctor is now seriously discussing an implanted spinal cord stimulator versus more ganglion blocks or ketamine blocks, but I went ahead and scheduled three more ganglion blocks for now. I don’t think I had fully accepted that I may face this the rest of my life. It was a wrist sprain! Two years ago. TWO YEARS ago.

What is most difficult, I think, is the loneliness. I do not look like I’m in pain. I strive to act as normal as possible not only because that’s how I choose to live but also because continuing to use my arm and hand normally is what my doctor feels will help prevent it getting worse. But while I look like I’m making lunch, I am continually fighting my brain’s signals of both pain and to not use the arm, to roll it up and pretend as if it’s not there. I know that sounds strange, but that is how it feels.

Of course, there are definitely good days too. But driving to the clinic alone to have a big needle stuck in my neck while I’m fully awake is … lonely. We have so many pulls on our life…. I sound as if I want pity. Not pity, just not to feel alone. So I now describe it to you, my friends, so I don’t feel so alone. But I need to remind myself that I’m never alone. God foresaw and will use even this.

In the grand scheme of things faced by our family, this is but a speed bump. It just happens to be a long one.
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

James 1:2-4. I’m sure working on that perseverance thing.

Last modified: May 17, 2016

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