Monday, April 11, 2016

Fifth State of the Cassie Address

To put things short and simple: I've been doing pretty well.


That is, when I'd feeling well, I'm doing great.  When I'm not, I'm not.

What I mean is, I'm mostly doing really well.  I'm almost sure that as far as active GPA goes, I'm in the clear.  It's hard to tell, but I'm mostly clear of symptoms and my blood work looks good.

There's some damage though, and that's making things difficult.  The worst thing I'm dealing with right now is one infection after another after another.  Since the beginning of the year I've had 3 sinus infections, and one eye infection.  That's 4 infections is as many months.

I think now at this point my immune system should have recovered from all the immuno-suppressants we used to treat the GPA.  The Rituxan didn't actually kill my entire immune system, which is good.  Prednisone (my arch nemesis) does do a number on your immune system though.  It's been long enough since I took either that I think my system should be recovered.  I probably should have asked my doctor about that on Thursday when I saw him.

So I saw my doctor on Thursday.  He took some of my blood. It's all normal.  He thinks I'm doing well and is very optimistic about my condition.  I'll see him again in 3 months.

If I don't have the Big Bad Disease anymore, why am I sick so much?  Well, like I said, there's damage.  And I finally have new insurance, so I can see the Specialists and hopefully get the damage fixed.

Part of the problem is my nose is still seriously jacked up.  There is probably some damage to the mucus membrane of my nasal passages which is kind of the first line of defense against infection.  That's something that may or may not be improved with a minor procedure (still under anesthesia though) but might not actually be fixable.  I have to see Nose Doctor about that.

I also need to talk to Nose Doctor about my eye.  Specifically what I am fairly certain is a blocked tear duct.  The blockage could be an extension of my nose junk, or it could be something else.  Nose Doctor will most likely refer me to another specialist; my Rheumatologist thought it would probably be an eye doctor who is not a whole eye doctor, but just the bits of the eye that are not the eye ball.  If/when I see him, I'll refer to him as Eye Doctor for simplicity's sake.

I'm honestly a little amused by how specialized the specialists get.

In other news, I've decided to start running.  I used to run... 3 million years ago when I was in high school, before I got hit the first time with the Big Bad.  I didn't hate it.  I'm not sure I love running, but I've made it my exercise of choice for a lot of reasons: I don't have to go somewhere (like a gym) to do it, it doesn't use a lot of fancy equipment, and I can work toward a clear, definable goal (a sponsored 5k run).  Those are all things that make me far more likely to actually stick to it.  I'm only  a week into "training" and so far I'm not running very much. I found a really gentle 12 week couch-to-5k type plan, and I'm actually repeating week one.  So right now I'm doing 6 reps of a 30 second run followed by a 3 minute walk, 3 days a week.  It's not much, but it's a start, and I'm pretty proud of myself for doing it.

I think if I can whip my body and my lungs into better shape it will do two major things.  First, if I'm healthier in general, I'm less likely to be sick.  Second, if I can eliminate symptoms that come from being fat and out of shape, I can get a clearer picture of what damage/disease I'm dealing with.

I also just completed a Living Well with Chronic Conditions class.   I want to write about it, but I'll save that for another post.

All in all, I'm hanging in there and getting things done.  My life is getting back to normal... or maybe I'm getting used to my new normal.  I'm finding the balance between illness and life, and it feels pretty good.

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