Wednesday, December 9, 2015

Fourth State of the Cassie Address

I had a follow up appointment with my rheumatologist on Monday. It went well, I think, but the state of my health/disease right now can be pretty well described with shoulder shrug.

Remember my post about blazing medical trails?  The problem with doing that, is that there is no set procedure for now.  Some people get the infusions and that's it, they're done.  Some people go on some sort of maintenance drug.  There's no set path to follow.  So my doctor basically said "you seem to be doing well. I don't really know what to do with you now."  (But he said it in a competent way.  I don't in any way feel like he's not taking care of me).

There is a drug trial study thing that he's going to see if I qualify for.  I probably don't.  I'm sick enough.  The trial probably is more interested in people with kidney or at least lung issues.  I don't have that.  Even my blood work, except for that one very specific anitbody test, has not really been that far off normal.  As a data point, I'm not very useful, because there's not very good things to measure.

My doctor was really impressed, even surprised, by how much my throat has improved.

He told me to reduce the amount of prednisone I'm taking to 5mg a day, and if I don't feel terrible, I can stop taking it on January 1.

He's running some blood tests.  We'll see what they show in a few days.

Basically, I'm kind of, maybe, done?  It's still going to take time for me to be back to full health, or as close as I can get, but getting there at this point is just a matter of waiting and letting the rituxan do its thing.

I really am feeling better every day.  I would say right now I'm functioning at about 70% normal energy levels, which is pretty good. I can breathe much better with my throat more open.  My nose is still pretty junked up, and that may or may not get better without some sort of procedure/surgery.

All in all I'm doing pretty well.  Hooray!

Thursday, December 3, 2015

I am Jack's Weird Throat

I had an appointment with Throat Doctor today, and I'll get to that at the end of this post.  First, let me tell you about the deal with my throat.

Once upon a time, I thought I had severe asthma.  So I went to an asthma and allergy specialist.  He had me breathe in a tube and did a chest x-ray and decided that I did not have asthma, but that there was something wrong with my vocal chords. He sent me to an ENT.

The ENT stuck a tube with a camera on the end in my nose (because I also have a bunch of nose junk he needed to check out).  When he was done looking at my nose, he pushed the tube farther down until he could see my vocal chords.  Let me take a second here to say that it was one of more uncomfortable things I have experienced.  He had me hum and stuff to make sure my vocal chords were ok (they are), but he could pretty clearly see that the problem was just below the vocal chords.  Subglottic Stenosis.  This ENT referred me to Nose Doctor because he didn't feel like he was equipped to handle my super crazy problems; Nose Doctor referred me to Throat Doctor because these guys are very specialized, I guess.

So what is subglottic stenosis?  In English: sub = below; glottis = vocal chords; stenosis = abnormal narrowing.  So, what that means, if this is a normal throat


My throat looks like this:

 

As you can imagine, that makes it a little hard to breathe.  If you want to know what it's like, find yourself a straw, cut about an inch off one end and hold it in your mouth.  Now, go about your business just breathing through the straw.  You can get by doing most things as long as you don't exert yourself too much, but it's very very easy to get winded.

Subglottic stenosis can be caused by a lot of things, including GPA.  It's a fairly rare symptom of GPA though, and can be a little weird.  It's not necessarily indicative of a full systemic flare.  Also, the presence of scar tissue there can mean that the little evil granuloma monsters have come and gone.  Also, it doesn't always clear up when the GPA clears up.  So sometimes there has to be surgery.  Basically, they cut into the scar tissue with a laser and then inflate a balloon to dilate the opening:


Hopefully I won't have to do this. My appointment today was very promising. In fact, I have a picture for you of my very own throat:
This is a side by side comparison from today (left) and my first appointment with Throat Doctor. Here it is again with more stuff drawn over it:

Clearly, there has been very significant improvement. I'm no longer breathing through a drinking straw. There is still some room for improvement, and there was a bunch of mucus down in their because my nose is messed up and I have a lot of post nasal drip (you can see a little string of it in the picture from today). But this is really awesome. It's hard evidence of major improvement. I'm extremely pleased. 

I have an appointment with my rheumatologist on Monday. I'm sure he'll do a million blood tests and we'll find out if the rituxan infusions did the trick or if we need to try some more drugs. I'm optimistic, especially after seeing so much improvement in my throat. 





Tuesday, December 1, 2015

Miss Me?

Yeesh, it's been two weeks since I last wrote.  Sorry.

I also totally dropped the ball on my "30 days of Thanks" project too.  I stopped that on the 22nd... so I missed 8 days of stating something I'm thankful for.

A couple days ago, I acknowledged to myself that it has been a long time since I blogged, and I asked myself why.  The answer is complicated, and I will try to explain, but I think my lack of writing is symptomatic of an over-arching depression... stress... disappointment ... bad-ish mood.

Last I checked in, I had gone back to work, and then taken Wednesday off to recover from going back to work.  I'm still back at work, and it's going... fine? I guess.  Here's the thing, getting back in the swing of working is really good.  It's a step in the right direction.  And, as I've mentioned before, I really like my job.  And this week I'm doing really well - I might even be able to work my full 30 hours.

But

It's really really really hard.

I don't mean work itself, really, it's just the routine.  Or lack there of.  When the time came to go back to work, I was just really getting to a good place at home - I had enough energy to be somewhat productive, and enough time to organize and plan what I could do.  I might have taken me all day to clean the kitchen, but I could do it and then I would have a clean kitchen.

I went back to work with the idea that, for the first couple weeks anyway, my goal each day, my entire to-do list, would be Work 6 hours.  Anything else would be a bonus.  That has been an accomplishable goal, but I would really like to do the anything else as well because I like being able to take care of my house and my stuff  (I'm getting there, yesterday, I did dishes after work. Like a person who is not exhausted).

I would also really like to do something about the prednisone weight, and the extra weight I had before prednisone.  Before I went back to work, I was doing a little bit of exercise every day - it was usually 10 minutes of Yoga or a short walk.  I wasn't on my way to running a marathon or anything, but I felt like I was proactively working toward fixing something I was unhappy with.  I definitely don't have the energy to exercise and work.  Also, feeding myself is something really hard so there have been some not so great dietary choices made since I went back.

Basically, in some ways, going back to work has affected me in almost the same way being really, really sick did; I can't do anything and it's really frustrating!  There are also things for me to stress about that I don't really want to write about right now.

I think there was a part of me that irrationally thought going back to work = getting back to normal.  It's kind of funny how I can know that this process is going to be super long, but also be so disappointed that this process is taking so long.  Disappointment.  That's the darkness that has tinged my last few weeks.

There's also this thing that makes me say "what the hell, self?"  Before I had a doctor tell me "You definitely are having a relapse"  I was fine.  Well, I mean, I couldn't breathe a lot of the time, but I was fine.  I had energy and focus like a normal person.  I just couldn't breathe, which is surprisingly easy to work around.  It wasn't until I was officially sick that I really felt sick.  Part of that was side effects from the prednisone.  I can't help but wonder how much my brain had to do with it though.  Do I feel sick because I know I am sick?  Did I actually feel sick all along and was actually just really good at ignoring my symptoms?  If that's the case, why can't I ignore my symptoms now?  Ok, I know the answer to the last question: because it would be counterproductive and probably slow down the healing process.

The truth is, things really are getting better.  It's slow progress, but we knew it was going to be.

Wednesday, November 18, 2015

Minor Setback

I'm not going to work today. 

I am far too tired. But tired is too simple a word for how I feel. Here is a breakdown:

I am lightheaded

My limbs weigh 300 lbs

My sinuses are full of stabbing

My brain is .... So you know the difference between running in waist deep water and running on dry Land? That's how my brain is working; it's the one in the water. My processing power is like Windows 95. 

My eyes are resisting focusing on anything for very long 

I have a headache that may or may not be different from the stabbing in my sinuses. 

I think that's all. So I'm taking today off. Hopefully I will recover enough to work tomorrow and Friday. Now, I think it may be time for my third nap of the day. 

Oh. Wait. My nose just started bleeding. That's fun. 

Today sucks. 

Tuesday, November 17, 2015

Hi Ho Hi Ho

It's back to work I go... went.

Yesterday was my first day back to work after two months of being home sick.  This is a pretty major step.  It's also a whole new environment to navigate because while I am feeling well enough that I don't have to stay at home all day, I am still unwell enough that I can't really throw myself in to super-librarian-do-all-the-things mode.

The nice thing is that I am not actually a full time librarian - I am supposed to work 30 hours a week, which is kind of a perfect amount to work weather or not I am sick.  Before I left, I was working three 8 hour days and one 6, with an extra day off, which is really nice because there's a lot a person can get done with a day off in the middle of the week. For now, I'm not even going to try to work a full 8 hours.  So I'm shooting for five 6 hour days.

So far it's gone... about how I expected it to.  By the end of my six hours yesterday I was completely exhausted. I didn't sleep very well Sunday night though, and I'm sure that didn't help things at all.  Today I am still very very tired after working, but it's a little better.  I had better sleep last night (probably because I was exhausted) and I came in to work a little later, which was very nice because it took me a long time to get going this morning.

The last hour at work today I was pretty much useless.  I think I lost my train of thought and stared at the wall behind my computer for about 10 minutes at one point.  The good news is that we're about to start the slower season in library land.  We don't have as many programs in December, and book ordering is finished for the year, so I am really able to take my time easing back in to things.  And I have the best boss in the whole world who is letting me be super flexible with my schedule and with what I need to get done at work.

It can only get better from here too (hopefully).  One really nice thing about this change is that it really gives me more tangible way of assessing how I am feeling.  Like when I get through 6 hours and can go home and still do things there, that will be a real, almost measurable, sign of improved health.

One major problem though, my sweet kitty is very sad that I am not home all day to play with her anymore.  You should hear the sad kitty noises I got when I walked in the door yesterday.  Sweet Jinx has a very sad life full of disappointment.  My other kitty, Yeti, hates me a little and is probably thrilled to have the house to herself now.

Wednesday, November 11, 2015

Live from the Infusion Center: the last!

I'm about to head out to the infusion center for my last treatment! I will be updating this post as things happen. Or, since not a lot really happens while I'm there, as I think of things to say. Stay tuned, or whatever the Internet equivalent is.

9:10 - initial blood pressure: 121/76 - for whatever reason the first one is always a little higher. Waiting for the nurse to come in to start the line and give me my tylonal, benedryl, and steroids. 

9:30 - I'm all hooked up. The pharmacy was super fast getting my bag ready so I hardly had to wait at all. So we're going at 100 ml/hr right now. My fancy bandage thing is orange. Bright freaking orange.

10:45 - Something happened!  I had updates and they just vanished.  Strange.  They weren't very exciting, I guess, but I did them.  There was one at 10:00 and at 10:30 when my rituxan drip ramped up. I also had an update about the blood pressure machines.  So, I have been live blogging more lively than it looks.

Anyway, my blood pressure is now 117/66.  There are two kinds of BP machines here - one blue and one white.  I like the blue ones better because they make a happy little beeping noise when you turn them on.  I have a white one in my room today so no happy beeping noise for me.  Apparently, the blue ones are actually old and are starting to get worn out.  They aren't made any more so there aren't parts to fix them, so they are slowly going to disappear and be replaced by white ones.  Soon there will be no happy beeping noise for anyone.  Sad day.

10:50 - BTW, I'm getting infused at a rate of 300 ml/hr right now.  It'll go up in about 10 minutes.

11:00 - I told you it would go up in about 10 minutes.  400 ml/hr.  I have a little over 400 ml left in the bag.

11:10 - I have a roommate now.  Apparently there's a room down the hall with a whole bunch of people in it - visitors for the person getting stuff.  Roommate was commenting on how strange that is as she came it and we chatted about it a bit.  I like having my incredibly attractive fiancĂ© Matt with me, but I wouldn't want more than that.  Sitting through the infusion is kind of a waste of time for visitors.  I mean, there's not really a lot to do here.  Matt is working on homework and fetching things for me when I need stuff.  Not only that, if you have a bunch of people crammed in your room, they're bound to get in the way.  The center is not set up for large crowds.

11:17 - Roommate is getting her stuff in a bottle.  A glass bottle. I wonder if the pharmacy ran out of bags?  Glass seems like it must be much harder to use - for one thing, there are lots of bubbles at the top, for another, when it gets down to the end, I think it must be hard to get those last drops out.  I will not find out though because I'll be gone before she finishes.

11:25 - BP is 110/7 - I have about 200 ml left.  

11:48 - I just want to take a second to say that the nurses here are pretty great. They've all been very friendly and nice. They're very helpful too and happy to bring things (like blankets or drinks or snacks) if I ask for them. These are good people. 

11:55 - I'm gonna nap time now. I bet we soon and I start to snooze they're going to bring by sandwiches. But we're not going to eat hospital lunch, we're going to get something after. 

12:04 - just kidding. I'm not going to nap. I'm going to read and knit. I'm almost done anyway. See: 

12:15 - all done! Final bp is 117/56. Now there's not much to do but start feeling better, right?
.

Monday, November 9, 2015

Third State of the Cassie Address

I had an appointment today with the Nose Doctor.  It wasn't really a very productive appointment, but I'm glad I went.  He did stick a camera up my nose, and this doctor has monitors so his patients can see what he's looking at, which is cool.  So, yeah, I got to actually see inside my nose, and it is not pretty.  It's really bad.  Once you get past the tip of the nose, pretty much every surface of my nasal cavity is covered with crusty gross stuff.  Nose Doctor tried to scrape some off, but stopped because he started some bleeding.  It was pretty bad.

As horrible as that was though, my nose feels about 300 times clearer than when I went to the first doctor back in, when was it? August?  For the most part, I can actually go through the entire day without being forced to breathe through my mouth because my nose is completely blocked off.

Nose Doctor gave me an option of a not-even-really-surgery procedure and basically scrape all of the junk out of my nose.  This would tear things up a little bit.  They would then put in some flexible rubber supports so that as the mess heals, we can make sure that the sides of my nasal cavity don't stick to each other.

I decided against that for now.  I want to give the rituxan more time to work, and I'm optimistic that as the GPA is cleared up, my nose problems will get better.  If they start to get worse in the next few weeks, or, if I get to remission and they aren't really better, then we'll see.

I also asked him about fixing the saddle nose.  He basically said that it's not something we should even think about doing until I'm securely in remission, which makes sense because it's kind of a Big Deal surgery (would probably involve using a piece of my rib to build my nose) and we definitely don't want to go through it just to have GPA destroy it immediately after.

So that's a very detailed report on my nose.

As for the rest of me....

This is my last week of leave.  I'm planning to back to work on Monday, and I'm a little anxious about it.  I'm also really excited.  The anxiety comes from not really having any idea how well I'll feel from one day to the next.  Last week, I was too tired almost to even move on Wednesday, Thursday and Friday.  How much of that was because of the infusion?  How much of that was because I really tried to push myself Monday and Tuesday to get a lot done?  Probably most of the fatigue was from the infusion, but I really have no idea how much going to work is going to affect me.

My goal is to work a full 30 hours.  I am not really going to try to do anything else next week.  If I can, then that will be a super awesome bonus.  If I can't get through the full 30 hours, that will also be ok.  I'll deal with it.  If everyone could send me good vibes and good luck next week, that'd be great.

I'm excited to go back to work for many reasons.  Mostly, I'm looking forward to regaining a part of life that has nothing to do with being sick.  I'm looking forward to wear real pants (I've been living in sweat pants, pajama bottoms, and leggings).  I miss seeing people.  I miss seeing the books too.  I mean, I have book here at home, but libraries are way bookier.  Also, I have a 3D printer to play with at work.

What else?

My last infusion is Wednesday.  I will live blog it.  I don't know if anyone is really enjoying those, but I'm kind of having fun writing them.  I have no bruise from the last one.  I'm thinking I was allotted X amount for bruising for these treatment and the first one got greedy and took it all.  Yeah, ok, it doesn't actually work that way.  What probably happened was that I reduced my prednisone (side effects include easy bruising) and don't bruise quite as easily anymore.  Watch, because I said that, my entire arm will be black and blue after this last one.

I went through my closet yesterday and tried on almost everything and put things that are too small away under my bed.  Probably 70% of my clothes are under my bed.  I've gained about 15 lbs since this thing started, which isn't too bad.  I'm not happy about it though, and am working on figuring out how best to fix it.  This is a subject that is complicated enough that I will probably dedicate a whole post to it.

I think that's all I have to report at the moment.  And it's later than I thought.  I need to make dinner.