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N is for…No More

17 Apr

Today is one of those days where the pain from the fibromyalgia is so intense that I’m in tears and curled in bed trying to remember how to breathe. It’s not conducive for thinking or writing blog entries and the only thing I could think to go for N was “No More” because quite honestly I want the pain to stop and I’m tired of having this awful disease.

Which of course led to this song from the fabulous musical “Into the Woods” because Yes, this is EXACTLY how I feel. I WANT to run away. But the things we want to run from, you can never really leave behind.

Especially when those things include this kind of physical pain.

So for today…a song. This is my favorite version with Chip Zien as the Baker and Tom Aldredge as the Mysterious Man.

 

And wait…what? Disney is doing a movie adaptation of the musical Into the Woods????

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Answers? Questionable.

23 Mar

So this week I went to one more doctor (rheumatologist) to get an answer on the lupus question.

Instead I got a whole lot more questions.

As I’ve been struggling with my health, I’ve also been struggling with the label that would at least give me some direction to struggle IN, the thought being that once you name something it can’t hold power over you anymore.

That IS how that old legend works, right?

Sadly, I need 9 more tests, which they took enough blood for to do, along with some extra that will be enough to do a few tests for some other patients in the clinic as well. If it worked that way.

The doctor is not inclined to think this is lupus though. Thank God for that! It could be a really nasty fibro flare (really possible). It could be some other connective tissue disorder which is the rheumatology equivalent to calling my son PDD-NOS when we had him tested for autism (Pervasive Developmental Disorder Not Otherwise Specified – meaning he’s on the autism spectrum but they don’t really want to say where…)

So. No answers. Now it’s back to life as usual, trying to keep myself distracted and focusing on the me in the moment, and not worrying about what I MIGHT have – a neat trick under the best of circumstances.

At least I have plenty to keep me busy, now that I’ve got contest entries to score (I judge various writing contests this time of year. Really hoping for that fabulous story to be lurking somewhere in this stack…)

I wish I were better at patience!

What’s your favorite distraction when you have to wait for something important?

Still….at rest…

3 Mar

Well, it’s after March 1st, my self-imposed deadline for this sabbatical I started back in December. I’d like to say that everything is better, but it’s not. The problems I had with inflammation have improved, but a lot of the pain and weakness are coming from another illness that I seem to have developed in this last year.

No diagnosis as of yet, but it’s looking like Lupus, something that isn’t anywhere near as fun as it sounds (c’mon, admit it, you were thinking about werewolves too, weren’t you…)

So. Work?

Not really. Small doses, little amounts certainly. It’s past time for me to stagger forward and attempt some semblance of normal life. Will I ever go back to work full time? My doctors say probably not. That in fact I’ll most likely be working a couple of weeks and then having a couple of weeks off, back and forth like that. Because I will need to rest and recover.

And of course, having been so quiet the last three months have made me very very weak.

So where does that leave me?

Still at rest. Still reading and resting and spending most of my time in bed. Getting up occasionally and getting work done as I can. Not feeling bad about curling up under the blankets and just resting for the remainder of the time.

This is an adjustment, but it’s part of living with auto-immune disorders. The diseases are real and not going away.

But I’m doing the best I can with them.