Oh Dear

Friday was a bad day.

I woke up after about 8 1/2 hours of sleep feeling completely exhausted.  Like stupid tired.  My limbs felt like they weighed 50 lbs each, I could barely keep my eyes open, sentences began to fall about 5 words in because my brain just wasn't willing to chip in and help my mouth with words.  I did't go to work because I was pretty sure I would be dangerous behind the wheel.

I am familiar with this kind of tired, but I was very surprised to see it.  I've been doing really well lately, and fatigue hasn't really been a thing.  And, of course, it popped up at the worst possible time - I had a couple classes coming to the library on Friday for a tour.  So I'm frustrated about that.  I'm also not sure what this means to my overall health.

It could be that I just did too much on Thursday and used up all my energy reserves.  Even though I have been feeling pretty well, I'm still in the recovering from being very very sick.  Spoonie rules still apply.  Even if my disease isn't active (it's probably not), there's been a lot of damage to my system.  It takes time for all that to recover.  So even if I'm mostly better, I guess I still have definite limits and need to be careful to not over-do it.

I'm worried that I've been masking symptoms.  I'm actually very good at ignoring how tired I am and working though fatigue.  Not fatigue like I felt on Friday, but lesser fatigue.  If I've been ignoring lesser fatigue, it could have built up, and then one super busy and tiring day finally overloaded me and I lost functionality.

There could also be mental health factors at work.

Anyway, as soon as I decided I wasn't going to make it to work, I went back to bed for another 5 hours and spent the rest of the weekend taking it easy.  I'm feeling much better now, but I'm not sure how to interpret this event.

Do I cut back on the things I'm doing?  Should I just try paying more attention to my energy levels?  That would could be good or bad, because I'm just as good at creating psychosomatic symptoms as I am at ignoring real ones.  Should I go on as I have been and write it off as a one time thing unless it happens again?

Worrying about this is stressing me out.  And I don't like set-backs.  At this point I'm probably over-thinking it and making mountains of molehills. f

Choosing Joy

I mentioned before that I've decided to start running.  The reasons are many, but probably my biggest reason is that I have enough that's wrong with me, so I want to actively work on fixing what I can.  If I'm generally in shape, I can tell better when I'm sick (many of my symptoms can be written off as symptoms of just being out of shape).  So I'm starting to run*.  Running because it's good cardio and I can do it without having to go somewhere to work out.

Today I super did not want to run.  I'm on day 2 of my the first week of my training plan... for the 3rd time**.  I was sore and stiff this morning.  It's a bad nose day.  I haven't looked at Tumblr all weekend, so there's a lot of internet out there to distract me.

I made myself get out of the house and go anyway.  I reallly really want this to be a habit, a routine, something I just do without thinking about it, and the only way to make that happen is to just get out and do it.

About 3 minutes in to my warm-up walk, I realized that I had a running negative commentary going in my head: "I don't want to do this.  The sun is too bright. My legs hurt.  I'm tired. I really don't want to be doing this..." You get the picture.  That sort of self-talk is definitely not helpful, so I made up my mind to stop it.

Now, you might have noticed, as soon as you decide to not think about something, that something is all you can think about.  So that's not what I did.  I decided to shift my focus externally and actively look for good things and comment on them in my head.  The first thing I found was a lilac bush in full bloom; it was beautiful.  Then I noticed how green all the plants are.  And, you know what, it is actually a really beautiful, clear, sunny morning. Then Queen started playing through my headphones and suddenly I was running with a smile on my face and really enjoying myself.

I'm telling you this story because I think it really exemplifies the way I try to go through all my days.  Some days it's really hard to find things good things.  And some days looking for good things takes a lot of energy that I just don't have.  But I usually find if I just start, even with the tiniest thing (for example, when I was stuck at home with 0 energy feeling completely awful, I got a lot of quality cat time, so I would focus on the sweet Jinx kitten), the good things start to snowball and overwhelm the negative thoughts.

It works for everything.  If I've had a really super bad day, and I make a point of saying "ok, all those bad things happened, but what about the good things that happened too?"  And I actively go through my day and look for good things.  I've never had a day in my life when I didn't have at least one really good thing happen.

So, anyway, I may have been dealt a kind of shitty hand in life.  But everyone gets their share of bad stuff.  I have a lot of really wonderful things in my life too.  I choose to look for joy, and be joyful.  I may sound like a Halmark card, but it really works to make everything easier.  I can't control the bad things that life hands me, but I can control what I dwell on.

Here's a kitten for you to look at if you need a little joy in your day:

*when I say run at this point, I really mean mostly walk.  I'm following a super gentle couch-to-5k thing, so right now I'm running about 3 minutes each time, and walking 20+

** I started the program, and decided to do the first week twice, because it was hard, and I'm REALLY out of shape.  Halfway through the second time, I injured my knee - it was a baby injury, but I took several weeks off running (still did exercise... a lot of strength training and playing Just Dance) to fully let it heal because injury=bad.  Now I have new running shoes, and I'm starting over again.  I'm going to be psyched when I finally move on to week 2.

Fifth State of the Cassie Address

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

Mostly.

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.

I Miss Dancing

Anyone on Facebook probably knows about the memories or "on this day" thing, right?  You click on it and it shows you everything you posted on this day in years past.  It's kind of fun.  It makes me a little sad though because up until 5 or 4 years ago, 90% of what I posted had to do with dancing.

I loved dancing.

I still love dancing, but I haven't done it in a really long time.

I'm not talking about just dancing around the house while listening to music (I do that often) or going out to a club and shaking your booty to music.  The dancing I love and miss is Lindy-Hop and, to a slightly lesser extent Blues.

There was a time when I was dancing one or the other of those two styles of dance 3-4 nights a week.  I don't think I can put in to words what dancing meant to me.  It was so life affirming.  It was just... movement and music energy and magic.  It doesn't fit in to words.

Besides that, dancing was something I did entirely for myself.  I started dancing regularly after the end of a relationship that had lose my sense of self.  As part of getting myself back, I (bravely) went to a dance event alone and took the lesson and fell in love.

I pretty much stopped dancing when I started grad school; I just didn't have time. And of course, by the time I graduated, I couldn't really breathe.  The rest is pretty much recorded here on this blog.

Now that I'm feeling a little better, is it time to dance again?  There's a couple places I know of tonight that have blues jams.  I could go and listen to the music and dance.  I would probably have fun.

I can tell you right now that I wont go.

I still can't breathe, really.  I'm so out of shape.  I feel like I've lost my grace; I can't make my body move the way I want it to.  Plus today (and most of last week) I have tendonitis in my foot, so dancing would be really painful.  Also, if I go to a blues jam, it will go late and I'll get to bed late and then be tired tomorrow.

There's part of me that knows all this is just a list of lame excuses (except maybe the foot thing).  If I just went, I could at least dance the slow songs, and I would have fun.  But there's a very strong possibility that I will be incredibly disappointed.  It's going to be so hard to go back to dancing and not be as good as I used to be.

I need to lose some weight and build up some muscle and cardio strength before I'm going to feel comfortable showing my face at a dance.  I can let my longing for my dancing days do one of two things: it can make me wallow in sadness and nostalgia, or it can give me something to work toward.  I'm going to make it the latter.

I promise, I'm going to go dancing before the end of the year.

What Doesn't Kill Us Makes Us Resilient

I spent all day Friday and half of Saturday at a failure conference.  It was hard because I have yet another sinus infection/cold thingy that is making feel very raggedy, and also has stolen my voice.  Those of you who know me might have noticed that I love to talk and share my opinions.  There was lots of opportunity to do that at this conference, and I couldn't because no one could hear me.  It was very frustrating, but at the same time it made for a unique experience for me.

Now, you are probably sitting there saying, "sorry about your voice and all, but 'failure conference,' what?"

It's kind of what it sound like.  There were some speakers and some discussions and they all centered around failure.  Mostly, I would say, the points that everyone made were:

• Failure is part of life and part of the process that leads to success
• Everyone fails
• Being afraid of failure kills growth (personal, professional, all kinds) & learning
• Changing the way we think about failure will make us less risk averse
• Sharing our failures is important; it helps us and others learn from our failures

That feels like an inadequate summary of the weekend, but you get the point, I hope.  Even though the conference was put on by ULA (Utah Library Association), the themes and lessons were really applicable to every part of life.  A couple of the presenters were from outside library land even - and I think that was the point.  

Anyway, the reason I'm writing about this here on my "I'm very sick" blog is this:  Being chronically ill has already taught me a lot about failure.  Or, if not about failure necessarily, about resilience.  I have to say that this conference was an excellent and much needed reminder of that.  I've been extra  frustrated and discouraged lately.  This weekend reminded me that I have the tools (I even have some extra tools now) to work past what I definitely see as a failure to live up to my own expectations of myself.

Granulomatosis with Polyangitis and all the superfun damage it has done to my system limits me.  Right now while I'm still kind of recovering from my relapse, I'm definitely more limited that usual.  In theory, after time and a few surgical procedures, my life will eventually get back to something that more or less resembles normal.  I will probably always be more susceptible to infection than other people, but at some point (hopefully soon) I should be able to go more than two weeks between colds/sinus infections.  But for now, I am limited.  Accepting those limitations feels like a failure to me.

I am definitely the type of person who wants to say yes to everything.  It's not so much because I think people expect me to, honestly.  I want to say yes to everything because everything is so fun or interesting.  I am enthusiastic about following through with my ideas and experiencing things born out of the ideas of others.  It is so hard on me to say "I can't say yes to that because I can't comfortably say that I will be healthy enough to follow through."  That feels like failure to me.

Maybe it's not though.  Maybe the failure would be in saying yes and then either pushing myself way to hard and making myself sicker, or then not completing what I set out to do because I had to spend a few days coughing my guts out and sleeping.  Maybe the failure is in not learning to accept that I can't do everything right now.  Moreover, I don't have to do everything right now.

One thing that came up many times over the weekend is that we are always harder on ourselves for our failures than other people are.  It couldn't be more true.  No one but me expects me to be able to say yes to all the things.  And no one but me sees it as a failure when I say I can't because health.  I need to remember that and start treating myself with the acceptance that other people have for my limitations.

Now, lets talk about resilience.  Because if anything makes a person resilient, it's living with in body that is constantly trying to kill you.  Here's a slide from the keynote speaker, Maureen Sullivan, this weekend:

That is not a good picture. If you can't read it (or if you can but want to save your eyes) here's what it says:

Resilient Individuals...

• have a staunch acceptance of reality
• have a clear sense of purpose and meaning
• easily improvise
• are optimistic
• are curious and continually open to learning
• have a growth mindset
• are self-aware and mindful
• are adept at solving problems
• are willing to experiment and take risks and
• have a healthy tolerance for failure

Maureen asked us all to look at this list and pick a few that were true for us, and a few that we needed to work on.  

I honestly believe that I can apply every single bullet point to myself.  Some maybe more than others (I have a hard time accepting reality sometimes).  Some of them are probably just part of my personality that I've had all along (curiosity, improvisation, problem solving).  A lot of them, I'm pretty sure I came to from being sick.

Take optimism for example.  My first round with GPA, I had so many medical professionals praise me for my "positive attitude" that it eventually made me want to positively punch the next person who said it.  Dealing with that though, really did bring out the optimistic side of me though.  I think it's important here to clarify what I mean when I talk about optimism though.  I don't go through life thinking everything is always going to be ok... sunshine and rainbows abound.  Optimism for me means finding silver linings and looking forward.  It means not getting bogged down in the terrible moments and letting the self-pity and self-doubt and negative self-talk go on and on and on.  I totally experience all three of those awful things.  But I say to myself, "Ok Cassie, you can feel bad for yourself tonight, but in the morning you're going to over it because self-pity won't get you anywhere."

That last bit was probably more mindfulness and self-awareness than optimism. What can I say, I think a lot of those bullet points are interdependent and work together to make resilient individuals.

There is so much more from this weekend I could go on about, and maybe I will in a later post.  Or maybe I'll create a whole new blog dedicated to failure.  For now though, I think this post is long enough, and anyway I have other things to do.  I am so glad I went to this conference, and it couldn't have been better timing.  I definitely needed the reminder that failure is just a part of the process, and just because I may fail sometimes, failure is not who I am.

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.