And a little bit more about me

I got the nicest comment last night from Sue from Narrowsburg. The blog hasn’t even been up for 12 hours, and she already dropped by to say hi. Hi Sue! Thanks for writing!

This is exactly why I started this blog. When you’re sick, it’s so easy to feel like you’re the only one hurting in a world of normal people. But that’s not true, is it?

 

I’m hoping this blog can be a place where we can talk frankly about our adventures in healthcare, where we can commiserate, blow off steam — and also count our many blessings.

 

This spring, I’ve had…

my first spinal tap

my first muscle biopsy (2 inches long, from my left thigh!)

a passel of nerve conduction tests

a bushel of blood tests

my first serious conversation about acquiring a wheelchair

my first time giving myself a shot

 

(A shout out to all you diabetes-sufferers out there, wow does someone need to redesign the syringes or what?! Those things are rickety and way hard to use. Is it just my pharmacy or do all personal-use syringes look like they were designed decades ago? I like 80s music and all, but I want to think we’ve learned a thing or two on the medical equipment front.)

 

Some of these experiences were a piece of cake, others (wheelchair, wheelchair!) are prompting some soul-searching.

 

My deal?

 

The latest diagnosis is that I have an autoimmune-triggered nerve problem.

 

My symptoms: trouble using my hands for very long (typing, housework, cooking) and most recently pain and tingling in my shins and feet when I walk or stand.

 

I’m very lucky: The doctors think it probably won’t get worse, and they have some ideas for treatment.

 

On good days, I really forget that anything’s wrong with me. I’m in the middle of some bad days now, and there’s some pain. I miss dancing. I miss being able to walk around without always worrying about finding the next bench. Basically, I miss being a 20-year-old in perfect health.

 

So there’s that balancing act again: I really am so lucky to be alive, lucky to have a great husband, family, and friends. But sometimes, sitting around in those hospital waiting rooms, don’t you just want to join hands and say, “This blows!”