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Quick Update from Overseas

I’m in Europe, Y’all!

I have been feeling good and have been hopeful that this trip wouldn’t cause my Relapsing Polychondritis to flare up.  So far, so good.

My terrible, horrible, no good, very bad knee has been bothering me for a month so I got cortisone injections before I left home.  The first half of my trip was work and work stressed my knee.  I took a rest day or two between work and running around like a crazy tourist and my knee is nearly fine!  I have walked miles and miles and miles in Paris and London (including many Many MANY stairs) and the worst effect is a mild sunburn where my SPF clothing didn’t cover.  Note to self:  SPF clothes don’t protect what they don’t cover — use sunscreen.

I have another infusion as soon as I get home and then I plan to go public with my illness.  So nothing is happening, really, but much is going on!

Quiet is Good

I’ve been quiet recently, and for good reason — nothing is happening!

My RP has been quiet for nearly a year.  WooHoo!!!!  My fibromyalgia pain is being managed by medication 19 out of 20 days.  I have energy and relatively little pain and generally feel better than I have in years.

I won’t lie — the days the pain breaks through aren’t fun (like today).  The side-effects from my weekly medications aren’t fun.  The infusions are distinctly unpleasant.  Otherwise, my life is pretty darn grand.

Yay me!!!


A Two-Fer

Two blog posts in one!

1.  It had to happen sometime.  I had a beautifully pain-free May, but Sunday’s weather did me in.  I have a variety of pain medication for a variety of types of pains and I took one of everything to get through the day.  Fortunately, Monday was better.  I’m slightly bummed that I had a bad day, but mostly grateful that it wasn’t a horrible day/week/month/year.

2.  I had a physical this morning.  I didn’t feel apprehensive about this appointment at all.  I feel better than I have in a few years, I haven’t had any flareups in over 6 months, and I’ve lost over 10 pounds.  So what does the doctor say?  “Your weight is getting up there.”  And then I heard the typical “You’re overweight and need to…” speech.  Um…. I’ve lost weight but I let her go on, because she wouldn’t be doing her job if she didn’t tell me that I should lose weight.  Eventually I had to interrupt, “Considering my size and medical problems, I’m in great shape.”  Reluctantly, she agreed.


A Small Fly in the Ointment

I am still feeling wonderful.  It’s so odd to not be in pain.  I’m not sure I realized just how much pain I was in until it was relieved.

My hands, however, are a bit of a mess.  I still have that trigger finger, two trigger thumbs, a pinkie with a messed up tendon, and a few other issues.  None of this is horrible, but I’m paying attention since I work with my hands.

So I will take my wonderful-feeling self to occupational therapy in hopes that they can improve my hands.  I want to halt any damage and keep use as long as possible.

Life is still awfully good!

It’s Really REALLY Real

The fibromyalgia pain has lessened significantly.

The Relapsing Polychondritis is quiet.  The awful effects from my infusions are nearly gone.

My trigger finger is still triggering, but whatever.

My terrible, horrible, no good, very bad knee is holding.  I still can’t run stairs and pivoting is an incredibly bad idea, but it’s holding.

Basically, I feel better than I’ve felt in over a year.  I’m hopeful that the next few months will be equally good and might even improve.  I could be very, very wrong, but hope feels wonderful.

I hope.


Is This Real?

I am recovering from a particularly brutal round of infusions.  Nausea, dizziness, and extreme fatigue.  Good times.

In between my treatments, I started medication for my fibromyalgia.  This causes nausea, dizziness, and lack of appetite.  Did you notice any repeats?

Basically, I have felt quite awful for a few weeks.  I’ve lived on crackers and peppermint and lost about 5 pounds each week.  Every meal feels like a battle.

I allowed myself a few weeks at home for treatment and recovery but that time is now over and I’m back on the road.  I traveled both Wednesday and Thursday.  I was tired, nauseous, and dizzy both of those days.  This morning I just about toppled out of the shower from dizziness.  Happily I caught myself before breaking any bones.  I managed to eat a few bites of breakfast.  I worked all morning, ate an actual (small) lunch, worked all afternoon, ate an actual (small) dinner, and am now ready for bed.  I wasn’t nauseous all day!  Also, the medications for the fibromyalgia seem to be working.  I haven’t wanted to curl up in a ball on the floor and weep from the pain in over a week!

Is this real?  Am I turning a corner?  Even if this was only a one day reprieve, I’m over the moon.

Keeping Score

I try to take things one at a time, but sometimes they gang up on me.  I have to give my husband the scorecard of what illnesses/injuries are attacking me and who is winning (usually THEM, not me) at any given time.

Here’s today’s scorecard:

Relapsing Polychondritis — tie
The disease is quiet and that. Is. AWESOME!   I haven’t had a flare up since July/August or thereabouts.  Score one for me.  I just finished my last infusion for this round.  This month of treatment has been much more dreadful than any of the previous ones.   Score one for RP.  Splitting headaches, not being able to get my head off the pillow, dizziness, nausea, etc.  I think I’m winding down on the symptoms and will have 16 blessed weeks before I have to do this all over again.  YAY!

Fibromyalgia — tie
About 10 days ago I cried “Uncle!” and started taking drugs for the pain.  The drugs make me tired, dizzy, nauseous, and unhungry (I couldn’t make ‘lose my appetite’ fit into the sentence structure).  Score one for Fibro.  Over a week later, I’m starting to get the benefit of these drugs.  Today is a perfectly awful weather day, one that would typically leave me curled in a ball waiting to die.  While today isn’t my favorite day ever, I’m functioning.  Score one for me!  I’ve lost 7 pounds from not eating.  The doctor thinks it’s a problem; I say “Thanks for the weight loss.”  She wants me to call her when it gets bad.  I won’t declare it bad until I’ve achieved my goal weight, so I’ll keep quiet for a year or two.  Score = undecided.

Trigger finger — I lost
I have a trigger finger that leaves me looking like Spider Man shooting his web.

I had a cortisone injection yesterday*, but it hasn’t helped.  So far, I’m losing.  I can have one more injection and then I’ll need surgery.  Since I work with my hands, I choose to not think about that right now.  It’s not too much trouble to reach over with my other hand and move my ring finger out of the way every time I want to work, open a door, type, hold a pencil,…

My Terrible, Horrible, No Good, Very Bad Knee — I’m winning for now
My grinding knee isn’t currently grinding.  I can walk down stairs almost normally.  I can walk upstairs almost normally most of the time.  I’m far from fine, but only stairs are a problem and then only sometimes.  This is a temporary victory.  The knee is bad and will only get worse, but I enjoy being able to ignore it for now.

* Fun Story:  As the doctor was preparing to give me the injection yesterday, she said, “This is going to hurt.”  After she stuck the needle in my hand, she said, “This is going to hurt more,” and depressed the plunger.  As she was bandaging my hand, she said, “You’re tough!  Most people scream when I do that.”  Hear. Me. Roar!