Saturday, July 30, 2016

Pinning my hopes elsewhere

Photo Credit

I thought I'd give a brief update from the last week.  It has been a big one full of ups and downs.

The ups:
1) I finished my last college course requirement for my certification as an IBCLC!  Now it's on to 90 hours of lactation education, CPR certification, and applying for the exam by mid-November!  I'm on track to take the exam in April and be officially certified by July of next year!!  I'm so excited.

2) I was cleared to go for walks and went for two of them!

3) I was cleared to go for (reasonably easy) non-stationary bike rides.  I've gone for zero of them, but I'll change that soon!

The down:1) Well there's really just one.  So it's 3-1 in favor of this being a good week, right?

All's been going well with my hip, and now it's really only the nerve pain in my feet keeping me from doing daily activities (washing dishes, cleaning the house, etc).

I went back to the neurologist yesterday. Every test he has run so far has yielded normal results and my feet aren't getting worse. I *think* they're getting better. They're at least getting less consistent about when they hurt. The inconsistency is great on the days I do a bunch of stuff on my feet and they don't hurt, but awful on the days I do the *exact same things* and they hurt like hell. It's psychologically pretty challenging.

The neurologist thinks that the problem is in small nerve fibers that need to remyelenate or regenerate.  Because the tests they've done so far are measuring function in all the nerves of my lower legs, the small and large nerve fibers can't really be separated out, and problems with the large nerve fibers are what would show up.  So I was given the option of a punch biopsy to count the number of nerves in my skin, but declined since it wouldn't change treatment.

Instead, we added a second drug to hopefully get the pain to stop interfering with my life.  From the medical perspective, my nerves are still healing and should be given a year to do so.

From my mental health perspective, this is my life.  My feet hurt.  This is the indefinite truth and what I need to do is figure out how - through a combination of medications and non-drug therapies and lifestyle choices - to live with feet that sometimes hurt.

I'm not giving up hope, I'm pinning my hope elsewhere.  Now I'm hopeful that even with permanent damage to my nerves I can enjoy my life.  People do this.  So many people live with chronic pain!  And I need to do that.  My feet have hurt for three years now, and the waiting for them to get better is just so old and I do find myself giving up hope for a pain-free life. So why keep making that the end goal? 

Would I be thrilled if my feet healed and I got off these drugs?  You bet.  We're pretty certain this nerve damage was caused by a drug in the first place, so I am - to say the least - not thrilled to be on more drugs and have more potential side effects.  But I'm going to go live my life with hope, joy, drugs, and whatever else it takes.
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