This Cold is Ruining My Life

I had a very exciting/terrifying morning.  Paramedics were called, time was spent in the ER.

Now that I have your attention, I'm going to back up a bit.

All the steroids and mumbo jumbo I've been on to treat my GPA has left me with a pretty shoddy immune system. Two weeks ago, I came down with a little cold that knocked me out of commission for a couple days.  I had about a week, maybe a week and a half, of feeling fine, and then I got hit with another one.

This cold I have now, has had me down for the count since Sunday.  I've been coughing like crazy all the time.  My voice has been AWOL since Tuesday.  I've been super tired. And of course, my nose is all congested and I have major post-nasal drip.

This all sucks because this week at work was supposed to be a very busy week for me.  Busy in all the fun ways.  I was really excited about this week.  Instead I've been flat out at home either sleeping or groggily watching Animal Planet and HGTV.

Yesterday I went to an instacare clinic and saw a doctor.  He gave me anti-biotics and codeine cough syrup and told me to pick up some sudafed while I was at the pharmacy.  I was hopeful that will a drug-induced full night sleep I would start feeling better today.

When I first woke up, I actually felt a little better, maybe.  At least, I woke up and was wide awake and didn't have to drag myself out of bed.  I was still coughing and my throat was really sore - I took a look at it and it looked pretty swollen and gunky.  I went out to the kitchen and put the kettle on for tea.

I can't pinpoint exactly when it happened, but at some point something shifted in my throat so that my entire airway got blocked off.  I was pretty sure it was just mucus from the post-nasal drip playing dirty with my sub-glottic stenosis.  This has actually happened to me before, though not since the Retuxan treatments which improved the stenosis.  But, with the extra mucus from the cold... it's not super surprising it happened again.

Remember in my post about my throat when said it was like breathing though a drinking straw all the time?  Well, what I had this morning is if you filled the end of that drinking straw with the straw wrapper.  If I tried really really really hard, using every muscle that ever had anything to do with breathing, I could slowly pull a tiny stream of air into my lungs.  This is actually super terrifying and makes your whole body want to panic.  Panic is a terrible idea because in order to get oxygen to my brain, I had to breathe slowly and deliberately.

Now, like I said, this has happened to me before.  I have a series of tricks to try that usually let me dislodge whatever is blocking off my throat.  These tricks involve moving my head around (to open the airway), massaging my throat, and sitting with my face over steaming water.  None of my tricks worked today.

At this point, I was afraid I was going to pass out and stop breathing and then Matt would get out of the shower, see my prone body, and freak out.  I didn't want to do that to him, so I pounded on the bathroom door until he came out.  I explained the situation to him as well as I could using some serious charades skills, and he called 911.  All I had to do then was sit still and try to keep breathing until the paramedics came.

The rest is kind of a blur.  There were a bunch of guys in my living room.  The gave me a CPAP mask with some albuterol (I think).  It helped a little, but I was still pretty blocked off.  After a little bit, they switched form albuterol to epinephrine. I don't know if the medicine helped at all, or if it was just the moisture I was getting from the CPAP, but eventually I started coughing and hacked up this huge plug of mucus.  Looking at it, it was kind of no wonder I couldn't breathe.

After that I was able to breathe more or less normally.  Because they used epinephrine though my heart rate was super high and the paramedics highly recommended I go to the hospital so they could monitor me for a while to make sure my heart didn't explode.

So now I'm... not quite fine, but not in immediate danger.  The ER doctor consulted with my rheumatologist and they're putting me back on prednisone for a few days, as well as the antibiotics from the instacare doc yesterday.  And I need to check in with my rheumatologist in the next week or two.

Of course, the cherry on the cake is that I have basically no sick leave.  I can't even handle worrying about that right now though.  I'm exhausted and sick.  And I had a very stressful and scary morning.

So Now What?

Right around Christmas, my mom posted on her Facebook page that I have been given a clean bill of health.   People had been asking her how I was, and that was the simplest way for her to let them all know.

The problem is, that a "clean bill of health" is at best an over-simplification, and at worst just not the truth.  It is true that I am feeling much better and am back to being able to do most things.  I'm 100% back at work certainly.  My throat has definitely cleared up quite a bit.  I do feel much better than I did when I started seeing all the doctors.

But I'm a far cry from being completely healthy.  My doctor did not at any point declare that I have reached remission.  There are a lot of reasons to be optimistic about it, but I'm not in the clear yet.  Even when it is in remission, I suspect there's going to be a lot of work to do with my nose to get it in working order.  It's working better than it did before, but I'm still using a sinus rinse at least once a day in order to keep my nose clear enough to breathe.

I'm also dealing with the aftermath of being so sick I couldn't move and the medication that went with it (the lovely prednisone).  I have gained a lot of weight, and I have lost a ton of strength, flexibility, and stamina.

2016 is going to be a year of improving health for me.  There will be lots of doctor's appointments.  There may or may not be some surgeries (we'll see if I need them, but I'm prepared if I do).  There is definitely going to be a lot of work toward eating well and moving more.  Developing good habits is really a top priority for me right now because the better my health is overall, the more likely I am to avoid a flare up of GPA (this is not necessarily based in fact, but it make sense to me).  Or, if I do have a flare, I like to think I can ride it out better if I'm over-all healthier.

The truth is, though, that I will probably never actually have a completely clean bill of health.  GPA is chronic.  I'm always going to have it and I can relapse any time.  I think I need to hold on to that in order to take care of myself going forward.  My last remission lasted so long that I let myself believe that I was well and truly done with it.  That I was sick, once, back when I was 18, but that I was completely over it.  While I do think it's worth being optimistic about staying in remission, I need to accept that permanence of my sickness in order to properly take care of it.

I hate going to the doctor when I'm healthy.  If I acknowledge that I'm never healthy, that block goes away, and I can get the regular maintenance I need to function as a healthy person.

As for this blog, I'd like to keep going.  I'm not sure what direction I'm going to go with it though.  I've not updated in a while because things are getting so much back to normal.  Also, I've been busy (I love that I'm able to be busy!).  I will try to update at least once a month.  I might just talk about how I have or have not made progress toward my good-habits-goals.  I will definitely update with any doctor's appointments, but my next one isn't until March.

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!

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. 

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.

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. 

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.