Wednesday, June 29, 2016

Life Hands you Lemons

I'm having a bad week.

First, some a quick update on things: I saw the Throat Doctor today.  He tortured me with a camera up my nose and then all the way down my throat.  My throat hasn't really opened up any more since December.  The good news is that he is conveniently available on July 26th so he'll be able to get in on the surgery party.

But, my week? It's been bad.

When they stuck a needle in my eye last week, they scratched something a little.  So then I had bleeding eyes.  The doctor gave me antibiotic drops and told me I had to stop taking any blood thinners, which basically means all the good pain killers.

So my eye was acting like it was infected on Monday, but it may have just been super cranky.  It has been stabbing me in the brain for the last several days and, let me tell you, Tylenol sucks.

I'm a little concerned that I might need to add neurologist to my list of specialists.  Migraines seem to be a thing I get now.  I'm hoping maybe they aren't, and that the headaches will stop after the surgery.  If not, well, neurologist.

So it's been a bad week.  There's been a lot of pain.  It has stopped me from going to work.  This, of course, frustrates me for all the reasons I've written about before.  It also kind of stresses me out because I don't really have any spare leave.  I don't know how much time I'll need after surgery to recover, but if it's much more than a week I'm going to be screwed.

I'm also worried about the surgery.  I'm worried that it won't work.  I mean, I'm worried it will cause as many new problems as it fixes old ones.  I have good reasons to think it won't really do that - the people going in and trying to fix me are probably the best in the state and they know what they're doing.  There are always side effects though.  It's probably not realistic to expect my nose to ever really function completely the way it's supposed to.  It's possible fixing my tear duct will lead to a lifetime of dry eyes or a bone ridge that will bother me as much as my little saddle nose.

I'm very consciously trying to not dwell on the worst case scenario.  In fact I'm working hard on positive imagery and self-hypnosis* because I do think there's something to be said for the power of positive thinking, hokey as it might seem.  I'm also trying to be realistic.  I don't want to set myself up for disappointment.

I started today with pain, and I am feeling kind of discouraged and useless and frustrated.  And then this popped up on my facebook feed:

This is a video about Josh Hanagarne, the world's strongest librarian.  He works for a different library system, but it's the same city.  I've met Josh.  He came to my book club when we read his book and tore a deck of cards in half.  I have friends who are actually friends with him.  He has tourette syndrome and it has in the past been very debilitating for him.

This one quote really struck a chord with me today:

I try to never go home because my tourettes is bad.  Because it’s always bad.  And no day is necessarily harder than the other.  And I could see myself saying 'oh it’s too much' and then I’d just never come back to work
That's been milling around in my head, and I think I may have been saying "oh it's too much" lately.  Maybe I need to suck it up and work through the pain and the discomfort.  On the other hand, my condition is different is not tourettes.  Sometimes it really is too much, and I can push myself to the point that I literally cannot function.  I think for me too much is something I have to pay attention to and be careful with.

Giving in to my condition is also something I need to be careful of.  I'm not sure that right now is the time to figure out what too much is going to mean to me.  I can try to figure it out, but I'll just have to figure it all out again in 27 days because surgery is going to change things.  Hopefully it will change things for the much better.

Anyway, if you have some positive energy to spare, send it my way.  I need to try to go in to work tomorrow (usually I have Thursdays off) so I don't have to use up my leave for this week of pain I've been having.

*So I've had some experience with self-hypnosis.  I did a whole bunch of it when I was 13 before I had back surgery to straighten up my spine and fuse it (yeah, that was a surgery.  This one I'm having next month is small potatoes) because scoliosis.  The operation went exceptionally well and I can't help but attribute at least some of that to the mental prep we did.  

Tuesday, June 21, 2016

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.

Friday, June 10, 2016

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.