Rituxan Flu

The side effects from the infusions are worse this time.

Or maybe they're not actually worse, they're just worse relative to how I'm feeling the rest of the time.

Last time, I felt really lousy the day after my infusion, maybe the day after that as well.  But then it was done.  Of course, I was super tired and unable to do much of anything anyway.  So going from Rituxan-super-extra-tired to just every day extra tired counted as a full recovery.

Now I have to go from Rituxan-super-extra-tired to pretty much able to do anything as long as I'm careful to no totally overdo it (as a side note, I'm totally over doing it every Monday at work doing a really awesome program that takes a lot of spoons).

I was really hoping that I could get through this fast and easy.  I figured, I could  get the infusion on Wednesday, feel terrible Thursday, and maybe Friday, and go back to work on Saturday.

So far it's been more like: Infusion Wednesday, dead tired Thursday, tired, nauseous, and headachey Friday and Saturday.  Fine Sunday.

It's annoying because I'm missing more work than I wanted to.  And I can't even really get anything done when I'm stuck at home.

But what can you do?

It sucks right now, but it's just temporary.  I'll feel better when it's done.  It's just frustrating.  That's all.

I'm going to head to bed now and sleep off the headache and fatigue from this week's treatment.  Two down, two to go.

Update! From the Infusion Center

Yep.  I'm at the infusion center getting Rituxan again.

So the last time I updated, I was about to see my rheumatologist because my nose and eye symptoms had gotten pretty bad again.

My rheumatologist basically said that he could go either way as far as needing to treat the GPA again. If there was a congress of 100 in his head making all his decisions, they would pretty much be 51 in favor, 49 against.  So he ordered some blood tests to see if that made any difference.

The blood tests all came back normal. Annoyingly normal. Because normal didn't give us any information at all, really.  If they were bad, if one or another level was super high, we could look at that and say "yeah, we definitely need to get some treatments going."  But they were normal.

Ultimately, my rheumatologist decided that it was better to do another round of infusions.  I didn't have any major bad reactions last time, and it's better to take care of this earlier rather than later so it doesn't go and close off my throat again.  Or, who knows, maybe this time it would go into my lungs again, or my kidneys.  If we can stop it when it's just in my nose, that's pretty great.

So I'm in the infusion center now getting my first infusion.  It's a different infusion center this time.  Last time I was able to go to the big medical center just a block or so away from my house.  This time I'm at the university hospital.  Their infusion center is not nearly as nice.  Apparently they're getting a new one, but it won't be done until 2020.

I'm all hooked up.
Tube coming out of my hand. Fun times.

Anyway, Here I am.  My veins were stubborn today and it took three tries to get my IV started.  Apparently, that is mostly due to the coffee I had this morning.  Next week I will skip the coffee.

Some of you may be wondering why I haven't kept this blog updated with all the details of this little flare.

I think the biggest reason is that I don't have to process what's happening as much this time.  I started this for two reasons: so I wouldn't have to keep explaining to everyone what is going on with me, and so I could work through my issues by writing about it.

This time I'm not as sick, and I'm taking everything pretty much in stride.  It's easier because it's not disrupting my life as much.  The last couple weeks I've been very tired and I've missed a little work, but I can generally recover my spoons with a day of much naps.  So, it's bad, but not too bad.

I am probably going to also need surgery.   The good(?) news is that if I can get it in before January, I won't have to pay for it. The infusions are expensive enough to take care of the max out-of-pocket amount for the year, so surgery will be totally covered. Yay for free surgery?

How's that for a silver lining?

I think that's all I have to say for now.  I think I might nap.  Or play Pokemon Go.  There are lots of pokemon at the hospital.

State of the Cassie Address: Many Months Later

Hi!

It's been a while.

You may have been assuming that I haven't updated this blog because everything has been going really well.  And you would be pretty much correct* in that assumption.

Since surgery, life has mostly gotten back to normal.  It's amazing how much of a difference having an open air-way makes.

I mean, it's seems obvious to say that breathing is important, but seriously. Breathing makes a huge difference!

A few months after my surgery, I was at an event at our big NBA stadium.  I was sitting with some friends near the floor,  so there were a couple stories worth of stair to go up to reach the level where concessions and restrooms are.  At one point, I ran up to the top and then realized that I had just run up several stairs and I wasn't winded.  I very nearly cried.

Since then, I've been taking full advantage of these newly available oxygen levels.   I was all set to run a 5K in October, but badly sprained my ankle two weeks before.

So, no 5K, but I've been doing other things.  Last week I went hiking for the first time in years. It was amazing.

I really didn't know how much I was limiting myself and what I was doing until all of a sudden I could do things again.

*But...

But...

Ok, so, it hasn't all been super great.

 My throat is in great shape.  And I am miles beyond where I was this time last year.

But my nose wasn't 100% fixed.  I mean, we didn't really expect it to be.

And the tearing in my eye came back.  So I went to my eye doctor and she was like "Go see your nose doctor because it might be nose stuff."

So I went and saw my nose doctor.  He stuck a scope up my nose and couldn't see the site of the eye surgery.  My middle turbinate was very inflamed and blocking off the opening to my tear duct.  He prescribed an anti-inflammatory nasal rinse with the hope that we could get the inflammation under control.  If that did work, he said, surgery.

So in the two months we gave that rinse to work, things have gotten worse.

It's always hard to tell with my nose if it's actually worse or not.  Changes in the weather, lots of dust, weird smells, all sorts of things make for bad nose days. But nose aside, the tearing is all back in my right eye and now I have some tearing in my left eye as well.

When things in that area are bad, it's probably an indication that things are bad.

So I'm seeing my rheumatologist tomorrow (lucky me got an appointment super fast). I might be ok, but I'm not optimistic.

Even if the Big Bad isn't doing its thing, my nose and possibly my eyes will need another surgery. It's just a question of whether that happens after a bout of GPA treatment or not.