Forward Motion

Within each search result, there were only a few commonalities:  Reflex Sympathetic Dystrophy & Complex Regional Pain Syndrome. WTH???

Since I had taken this time off of work to take more nursing courses, I had textbooks, LOTS of textbooks. I grabbed every medical-surgical nursing book I had (yes, I had a variety of them-that’s what happens when it takes 20+ years to complete an associate’s degree) and looked up RSD & CRPS. Everything seemed to fit.

With my insurance figured out, an appointment with my PCP and now armed with this knowledge, I was ready! For what though? What I ended up with was not exactly what I expected.

I went to my first appointment with my new PCP dragging my daughter and her boyfriend in tow. Actually, I was probably the one in tow since I sat in the backseat with my leg up on the seat. They accompanied me to the exam room. Nurse took my vitals, then left. Doctor walks in and kicked my daughter and her boyfriend out. (Note this to be something worth advocating for)

Doc does an exam, concentrating on my left knee/leg. She tests my reflexes. Nothing. She leaves the room for a moment & comes back with some kind of tool. I’m told to close my eyes. Not sure what she did because I didn’t feel a thing.

Then came the verbalization of what she interpreted the exam to mean. She diagnosed me with RSD (Reflex Sympathetic Dystrophy). Let’s discuss:

RSD is pretty much a garbage term for “You’re in more pain than you’re supposed to be”. No one knows the mechanism in which this occurs or who is more at risk to develop it. All anyone can say with any certainty is that it develops after an injury or trauma – typically to soft tissues. Now let’s make things more confusing: there’s a different, yet similar, process which involves trauma or injury to a nerve known formerly as Causalgia, then later as Complex Regional Pain Syndrome (CRPS). See the difference? You may need some glasses or a microscope to really see the difference here, but there is. Got it down now? Good, let’s further add to the confusion: BOTH RSD & CRPS are now known as CRPS I (RSD) and CRPS II (CRPS).

Garbage terms is something I am a bit familiar with. My second son was diagnosed with a different ‘garbage term’ when he was 3 years old…cerebral palsy. I spent almost 18 years advocating for his medical care, I should be able to advocate for me, right? Wrong. Again.

Of course I’m not sure how much of my advocating difficulty has been due to changes in healthcare or simply my inability to see myself as worthy of an advocate. Perhaps the latter is where I need to start.

CAUTION! Confession below ↓

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I started writing this post a few weeks ago. I know, questions...
Q- Why didn’t I post it then?    A- I wasn’t done.
Q- Why didn’t I finish it then?  A- I was working on solving all the things that have come up.
Q- What came up?                     A- Keep reading…

I’m going to touch on what has been happening with details to follow in later posts.

I started physical therapy in mid-March, finishing mid-May. This was daunting both physically and emotionally. And more on this later.

I sought the help of an attorney with my social security disability claim that was initially denied. More to follow.

I was diagnosed with a few additional ailments. Therefore, I saw a few more specialists. Keep following my blog for more.

My oldest welcomed my new grandson! Pictures to follow.

My daughter got married! Maybe there will be pictures later.

I’ve been trying to figure out how to work and have been working with the IL Dept of Rehabilitation Vocational Rehabilitation Services. Probably will be a long post later.

I battled with insurance. You KNOW I will cover this.

Right now, I’ve had a long day. Which I will tell you about later.

It all starts with one step.