Stick a Needle in My Eye

I saw the eye doctor today.  She's awesome.  So, let's talk about my eye for a while.  First, some vocabulary:

This is the nasolacrimal system. These are the eye parts we're dealing with

What you don't see in this picture is that the Lacrimal duct drains into the sinuses.  We already know that my sinuses are full of scarring.  My Lacrimal duct is too.  So what happens is all the stuff that would normal drain into my nose gets stuck in the Lacrimal sac.  I have this awesome party trick that no one ever wants to see: I can push on the corner of my eye (where the lacrimal sac hangs out) and a bunch of gross will ooze out in to my eye.  The resident who checked me out before the doc thought this was really interesting.

Almost all the gross that comes out of the lacrimal sac comes out of the upper canaliculus, which is unusual apparently.  The doctor was concerned that the lower canaliculus was also blocked, which would make things extra complicated.  To check this (squick warning) the doctor literally stuck a needle in the puncta and pushed it through to the lacrimal sac.  She also tried irrigating (the needle was at the end of a syringe of saline) the system - but it was pretty obvious that the lacrimal duct was completely blocked, and irrigating can actually make that inflammation worse.  She did irrigate my left eye, just to make sure everything was working. It is.

The good news is my canaliculus is not blocked.  The bad news was NEEDLES in my EYES!

By the way, having numb eyelids is a very strange feeling.

Also good news neither my vision nor my eye mobility has been effected.

So, I need surgery.  She's going to bypass the lacrimal duct altogether and just punch a hole in the side of the sac so it will drain directly into my sinuses.  She and Nose Doctor are going to do the surgeries together, so he will be able to make sure the scarring in my nose is cleared from the new opening.  Then she'll put in some silicon tubes (stents, really) that I'll get to keep in my eye for 12 weeks.  

In normal cases they would try to do all this by going into my nose and working out from there.  Unfortunately because my nose is so messed up, Eye Doctor is pretty sure that's going to be difficult.  So I will probably get a nice scar on my face.  She said that such scars usually heal really well.  I'm ok with a scar though.

Anyway, after having my eyes messed with for quite a long time (needles!), I got to go down the hall to the surgery coordinator.  As it turns out, Nose Doctor and Eye Doctor actually have very conflicting schedules.  They do, however, have a joint project/patient on July 26 already, so they both can have clear spot for my surgery as well that day.  Honestly, that's almost the worst time for me as far as what is going on at work and in life.  But I got the impression that I could either take that date or wait a very long time for them to both have an opening at the same time.  So I said yes.  

Hopefully Throat Doctor will be able to make it to the surgery party too.  I'll see next Wednesday. Maybe something will have gone spectacularly right for me, and my throat will be clear enough that he doesn't even need to get in there and dilate it.

Getting the Ball Rolling

I really like Nose Doctor.  He gets me.

I went to see him last week. He stuck a scope up my nose and had a look around.*  It looks better up there than it has in the past, and there are no super scary things, like pollups.  I think maybe it looked better because my appointment was first thing in the morning and I do a nasal rinse every morning when I get up.

He also poked at the bridge of my nose that I'm not super happy about.  He said my saddle-nose isn't really that bad at all.  He also mentioned that it's really hard to get a reconstructed nose to look quite right, and that's another thing I should keep in mind if/when I look into getting that fixed.

But I was there for the inside of my nose. Because it wasn't so crusty and yucky, he got a better look at what's really going on in there.  It's all stuff we kind of already knew because of the the CT scan I had way back at the beginning of this mess, but still.  There's a bunch of scarring messing things up and preventing proper drainage.  That is why my nose is messed up and why my tear duct is blocked off.

So he wants to do surgery.  By now he has consulted with my rheumatologist - to make sure I'm not going to GPA back any damage they clear up - and an Eye (but only the not-eyeball part; orbital) Doctor with whom I now have an appointment a week from Tuesday.

I brought up my biggest concern with him which is this:  My problem is scar tissue.  Going in and cutting things up usually causes scarring, so... by fixing the problem might we be making it worse?

He has the same concern, and explained what he could do to mitigate it.  But he agrees that it is a possibility.

Anyway, I feel very confident that he understands the rather complicated situation that is my face.  I feel like my nose is in very good hands.

When I go see the eye doctor, I will probably also schedule surgery.  When I made the appointment, the lady I talked to mentioned that they (being both Nose Doctor and Eye Doctor) were looking at a July date, although she didn't say which.  So that may be sooner than I really expected, which is good, I guess.  It will probably be really nice to consistently be able to breathe, which will hopefully be the result of the procedures.

*I wonder what inspires ENTs to go in to that field.  Is there anyone who, as a kid, was like "I want to look up people's noses all day! I love boogers!"  I'm sure that's not how it goes, but that thought amuses me.

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.