Friday, January 29, 2016

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.

Sunday, January 3, 2016

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.