Rituxan Flu

The side effects from the infusions are worse this time.

Or maybe they're not actually worse, they're just worse relative to how I'm feeling the rest of the time.

Last time, I felt really lousy the day after my infusion, maybe the day after that as well.  But then it was done.  Of course, I was super tired and unable to do much of anything anyway.  So going from Rituxan-super-extra-tired to just every day extra tired counted as a full recovery.

Now I have to go from Rituxan-super-extra-tired to pretty much able to do anything as long as I'm careful to no totally overdo it (as a side note, I'm totally over doing it every Monday at work doing a really awesome program that takes a lot of spoons).

I was really hoping that I could get through this fast and easy.  I figured, I could  get the infusion on Wednesday, feel terrible Thursday, and maybe Friday, and go back to work on Saturday.

So far it's been more like: Infusion Wednesday, dead tired Thursday, tired, nauseous, and headachey Friday and Saturday.  Fine Sunday.

It's annoying because I'm missing more work than I wanted to.  And I can't even really get anything done when I'm stuck at home.

But what can you do?

It sucks right now, but it's just temporary.  I'll feel better when it's done.  It's just frustrating.  That's all.

I'm going to head to bed now and sleep off the headache and fatigue from this week's treatment.  Two down, two to go.

Update! From the Infusion Center

Yep.  I'm at the infusion center getting Rituxan again.

So the last time I updated, I was about to see my rheumatologist because my nose and eye symptoms had gotten pretty bad again.

My rheumatologist basically said that he could go either way as far as needing to treat the GPA again. If there was a congress of 100 in his head making all his decisions, they would pretty much be 51 in favor, 49 against.  So he ordered some blood tests to see if that made any difference.

The blood tests all came back normal. Annoyingly normal. Because normal didn't give us any information at all, really.  If they were bad, if one or another level was super high, we could look at that and say "yeah, we definitely need to get some treatments going."  But they were normal.

Ultimately, my rheumatologist decided that it was better to do another round of infusions.  I didn't have any major bad reactions last time, and it's better to take care of this earlier rather than later so it doesn't go and close off my throat again.  Or, who knows, maybe this time it would go into my lungs again, or my kidneys.  If we can stop it when it's just in my nose, that's pretty great.

So I'm in the infusion center now getting my first infusion.  It's a different infusion center this time.  Last time I was able to go to the big medical center just a block or so away from my house.  This time I'm at the university hospital.  Their infusion center is not nearly as nice.  Apparently they're getting a new one, but it won't be done until 2020.

I'm all hooked up.
Tube coming out of my hand. Fun times.

Anyway, Here I am.  My veins were stubborn today and it took three tries to get my IV started.  Apparently, that is mostly due to the coffee I had this morning.  Next week I will skip the coffee.

Some of you may be wondering why I haven't kept this blog updated with all the details of this little flare.

I think the biggest reason is that I don't have to process what's happening as much this time.  I started this for two reasons: so I wouldn't have to keep explaining to everyone what is going on with me, and so I could work through my issues by writing about it.

This time I'm not as sick, and I'm taking everything pretty much in stride.  It's easier because it's not disrupting my life as much.  The last couple weeks I've been very tired and I've missed a little work, but I can generally recover my spoons with a day of much naps.  So, it's bad, but not too bad.

I am probably going to also need surgery.   The good(?) news is that if I can get it in before January, I won't have to pay for it. The infusions are expensive enough to take care of the max out-of-pocket amount for the year, so surgery will be totally covered. Yay for free surgery?

How's that for a silver lining?

I think that's all I have to say for now.  I think I might nap.  Or play Pokemon Go.  There are lots of pokemon at the hospital.

State of the Cassie Address: Many Months Later

Hi!

It's been a while.

You may have been assuming that I haven't updated this blog because everything has been going really well.  And you would be pretty much correct* in that assumption.

Since surgery, life has mostly gotten back to normal.  It's amazing how much of a difference having an open air-way makes.

I mean, it's seems obvious to say that breathing is important, but seriously. Breathing makes a huge difference!

A few months after my surgery, I was at an event at our big NBA stadium.  I was sitting with some friends near the floor,  so there were a couple stories worth of stair to go up to reach the level where concessions and restrooms are.  At one point, I ran up to the top and then realized that I had just run up several stairs and I wasn't winded.  I very nearly cried.

Since then, I've been taking full advantage of these newly available oxygen levels.   I was all set to run a 5K in October, but badly sprained my ankle two weeks before.

So, no 5K, but I've been doing other things.  Last week I went hiking for the first time in years. It was amazing.

I really didn't know how much I was limiting myself and what I was doing until all of a sudden I could do things again.

*But...

But...

Ok, so, it hasn't all been super great.

 My throat is in great shape.  And I am miles beyond where I was this time last year.

But my nose wasn't 100% fixed.  I mean, we didn't really expect it to be.

And the tearing in my eye came back.  So I went to my eye doctor and she was like "Go see your nose doctor because it might be nose stuff."

So I went and saw my nose doctor.  He stuck a scope up my nose and couldn't see the site of the eye surgery.  My middle turbinate was very inflamed and blocking off the opening to my tear duct.  He prescribed an anti-inflammatory nasal rinse with the hope that we could get the inflammation under control.  If that did work, he said, surgery.

So in the two months we gave that rinse to work, things have gotten worse.

It's always hard to tell with my nose if it's actually worse or not.  Changes in the weather, lots of dust, weird smells, all sorts of things make for bad nose days. But nose aside, the tearing is all back in my right eye and now I have some tearing in my left eye as well.

When things in that area are bad, it's probably an indication that things are bad.

So I'm seeing my rheumatologist tomorrow (lucky me got an appointment super fast). I might be ok, but I'm not optimistic.

Even if the Big Bad isn't doing its thing, my nose and possibly my eyes will need another surgery. It's just a question of whether that happens after a bout of GPA treatment or not.

Oops

Yesterday morning, right before I left for work, I blew my nose and the stent came out of my eye.

I felt a slight tug on my eyelid.  When I looked at the Kleenex (that is something I do because the color of the stuff that comes out of my nose tells me how healthy my nose is) I saw a few inches of silicon tubing.

It was supposed to stay in my eye for another 7 weeks.

So I called Eye Doctor, left a message, got a call back from her office saying “yeah, you definitely need to come in today.”

So I had a surprise appointment with my eye doctor yesterday. 

Everything’s ok. Mostly.

She did the needle-in-the-eye thing again to make sure that stuff could drain out of the new drainage opening – the one she created when she sliced up my face.  Some puss came out at first, but then it started draining really well.

Obviously, it would have been better if the stent had stayed in, and having it come out prematurely decreases the chances of the surgery failing.  I skimmed a couple medical articles on the subject though and according to those, premature stent removal decreased the success rate of the surgery from 93% to 90%, so it’s not really a big deal, probably.

Eye Doctor prescribed some anti-biotic/steroid eye drops which should help keep the new hole in my tear duct from scarring shut.  That was the stent’s job.  But now the stent is gone.

So that was fun.

The silver lining of that is that with the tube out of my eye, I am not tearing very much at all.  Today I’m even wearing eye shadow and it hasn’t washed away yet!

Also, she thinks the scar on my face is healing really well.  She was very happy about that.  

I can breathe!

Ok having the plastic bits out of my nose is amazing.

I can actually breathe. Through my nose. Easily. 

I feel like the inside of my nose is huge now; so much air can get through. It's really an incredible feeling. 

I keep expecting to not be able to take a breath through my nose, but then I can and it's weird and wonderful. 

It reminds me of the time I drove an ex boyfriend home after he had laser eye surgery. He kept saying things like "the trees have leaves! Obviously I knew they have leaves, but now I can actually see them!" And he was so excited and I was just like "um, yeah, that's pretty normal for those of us with eyes that work." I'm goin. Through that same thing but with my nose. 

And the plastic bits, by the way, were kind of huge. Picture a standard guitar pick. Now take the fat end and extend it about 1/2 inch. That's pretty much the shape of them. The plastic bits were probably thinner than a guitar pick, but still way bigger than you would expect to fit in a person's nose. 

But the point is, I can BREATHE!

Post-Op

Ok, so it's taken me a while to post about my surgery.  Two weeks. And then some.

Before surgery.  I thought it would be good to have a
pre-op picture for reference.

I think the reason I haven't posted is that I don't really have much to say about it.  I went over the procedures in ....  wait.... maybe I didn't go over everything all in one post.  Well.  I guess I'll do that now.

So, two ENTs and an Ophthamologist walk into a bar  an operating room.

The first ENT (Throat Doc) went and mucked about with my throat.  He used a laser to cut the scar tissue bridge that was going across part of my throat, and then cut into the band of scar tissue around the side of my throat.  Then he stuck a balloon down my throat, inflated it, and that was that. There are pictures if you click on the links.  I was really excited to have pictures, but not everybody likes to look at medical imagery.  Anyway, once Throat Doctor was done with all that, there was space in my throat to intubate so the other surgeons could surgerize.

The second ENT (Nose Doc) then roto-rooted my sinuses.  He went in and cut a band or two of scar tissue that was going from septum to turbinate (What's a turbinate? click to find out).  He also did a little digging around my sinuses - just under my eyes they were narrowed to about 1 mm.  The hope is that when the swelling is done, that opening will be around 3 mm.  He then sewed bits of plastic (or maybe they're sillocone) to my septum.  The purpose of those is to stop another band from connecting turbinate to septum.  Those are getting cut out later today - more on that later.

Finally, the ophthamologist took her turn. I pretty much went over her part in my eye post from a while back. Basically, she poked a hole in the side of my nose to create a new drainage path for my tears.  She also put stents in my eye, you can kind of see them even - I tried to take a picture but it didn't work, but if you see me in person, I'll be happy to point them out if you want.

So all that took about 4 hours.  I was feeling pretty good when I woke up.  I spent very little time in the recovery room before they moved me into the post-op room.  At that point, they finally let me eat (pudding) and drink (water... it was really good water... I was very thirsty).  Here's a picture of me there:

Immediately post-op.  There hadn't been enough time for things to start swelling.

Then it was time to go home.  I spent the next couple days kind of out of it and in pain.  Not a lot of pain though, really. My nose hurt more than anything else.  My throat was a little sore the day after, but then was fine.  I could already tell a difference in how much air I was able to get through my throat - very exciting.

My nose and eye got a little poofy.  I spent a lot of time with ice on my face.  I watched The Last Ship, Stranger Things, and a lot of Gilmore Girls.

Day after

Two days after. Eye was super swollen. Also, for some
reason my phone (with which I took all pictures) flipped
this one so it's all mirror-imagey.

By Sunday, the swelling had mostly gone down.  There was a little discoloration around my eye, as you can see in the picture if you look carefully, but that's it.  I fully expected to have a nice shiner, but all I got was some swelling and a yellowish tinge.  Good for me!

Sunday after (so 5 days)

I went back to work for half a day last Tuesday - a day sooner than my planned best-case.  Granted, I didn't work my full schedule last week, but neither would you if you had recently been punched in the face with a scalpel.  This week I've been pretty much back to business as usual.  I am taking it a little easy - and I'm still not supposed to lift anything heavier than 10 lbs.

Last Friday I had a follow up appointment with Eye Doctor.  She says the incision is looking really good and she thinks it will likely disappear as long as I make an effort to keep it from getting sun-bleached.  That means sunscreen, sunglasses, and fabulously large straw hats.  You have never seen such a glamorous recovery process.

As for everything concerning my eye that is not a scar - it all looks good.  I still have excellent vision, the pressure in my eye is good (having that tested in a weird experience btw), the eye tubes are positioned well.  My eye is actually a little dry, so I have eye drops for that.  I do still have a little bit of tearing, but that will probably go away when they take the stents out in 3 months.  It makes sense that having little tubes in my tear ducts is blocking some of the tears.  Also, the tearing is 300 times better than it was before the surgery, so I declare this one a success!

As I mentioned earlier, I am getting the stents cut out of my nose today.  I'm not really looking forward to the actual taking out part, but I'm definitely ready to get rid of the things.  I'm also glad to have a chance to check in with my doctor.  As of right now, I don't really feel like I'm any less congested than before.  I guess there's probably still some swelling going on in my nose, and the junk attached to my septum is maybe getting in the way of some normal nose clearing stuff.  I'd like to get a clear timeline of when I should expect to notice a difference, if I am going to notice a difference.

Now, 2 weeks post op.  In some lights the incision scar is barely
noticeable at all.

Also, the last couple days I've had a bit of a cough, and have even lost my voice a little.  Even though this is Nose Doctor I'm seeing, he is an ENT and the T is for throat.  Plus the cough could be just as much related to post-nasal drainage or something as it is to throat issues.  And I like Nose Doctor a lot more than Throat Doctor.

So, I guess that's about it.  The healing process is, well, proceeding.  It's all going about how I expected.  For the most part I'm feeling pretty good about it all.

Tomorrow is Surgery Day

In the morning I'm having my surgeries. 

I'm pretty excited. Not so much for the operation itself, but for the results. I'm excited for progress. 

I don't think it's realistic to expect the procedure to fix everything. I've pretty much made peace with the idea that my nose is always going to be messed up. But it should be better than it is now, after all I have a really good nose Doctor going in there. 

My eye is going to be better. I'm so excited to be able to wear eye makeup. It sounds a little silly, but I really do miss playing with makeup. 

My throat will definitely be better too. That whole breathing thing is going to be way easier. 

I'm so ready. 

That said, surgery is kind of a bit deal, so send me your good thoughts tomorrow. I'm not worried, but positive group vibes never hurt. 

I'll see you on the other side!

Things are Happening!

I’m taking prednisone again! Hooray! … wait… no, not hooray.

It’s only for the week prior to my surgery.  

My surgery is in a week.

I’m looking forward to it.  Well, it’s more accurate to say I’m looking forward to 3-6 weeks after it happens.  I can’t say which I’m more excited about - being able to breathe, or not having my eye water constantly.  Probably the breathing is more important, but I’m really excited about being able to wear eye makeup again.  Seriously.  I have some great eye make up, and I think it’s really fun.  I may go to Sephora or someplace like that and splurge on some really fancy eye shadow.

For the moment though, I’m going a little bit crazy.  We’re taking a little vacation* this week - we get back the day before the operation - and I’m a tiny bit stressed about getting everything done.

At this point, because I’ve been scrambling to do things, I actually have most of what I need to get done finished.  There are a few things left on my to-do list, but they are small, and can be done quickly in the next couple days.

Once we’re on the plane I will calm down.  That’s my deadline for everything.  Vacation time is time to relax before some very good doctors go to town on my face and throat.  Then I’ll have good drugs so I won’t worry about anything.

Actually, I’m getting lortab, which I’m not a super fan of.  I’ll take it to kill the pain, but hopefully I won’t have to take it much.  It pretty much just knocks me out and makes me woozy.  I don’t really like the feeling of drug induced sleep.

Here is a picture of my fierce face-eating cat.  This photo is serving as a transition instead of some kind of literary devise or something.  It's my blog I can be a lazy writer if I want to!  

Time is passing for me in a series of landmarks (except time related instead of land... timemarks?) or milestones on the way to surgery. They will continue after the surgery too. These are they - finished ones are crossed out - including parenthetical commentary (I enjoy parenthesis):

• Pre-Op Nose Doctor apt (Lots of post-op instructions. And my nose doctor is fantastic! At my request he walked me through exactly what he is going to do. He also gave me a couple precriptions (antibiotics and lortab) for post surgery)
• Anesthesia Pre-Op apt (This felt like a little bit of a waste of time. They didn't really do much. The nurse I met with was very surprised that they were planning on doing the whole surgical jam session as outpatient, so I guess there might be a good chance I'll be hanging out in the hospital over night. That will eat up my insurance deductible & probably my max out of pocket. yay? On the plus side, when I checked in for this appointment, they also early-checked me in for the surgery so day of I just have to pick up my ID bracelet)
• Rheumatologist apt (Actually not really directly related to the surgery. Just a regular every-three-months-appointment I get to do. Still, it's kind of nice to check in with him)
• No More Asprin or NSAIDs (This is hard. I think I may have come slightly dependent on my Excedrin and Naproxin to mitigate the aches and pains my sinuses and eye cause. But it is what it is)
• Start Prednisone (hooray?  The prednisone is the eye doctor's doing.  The reason I'm taking it is to reduce inflamation in my eye, both before and after surgery.  I only have to take it for a week. Still, not my favorite thing.  So that started today.  Surgery is a week from tomorrow)
• Last 3 days of work (this week I'm working a different schedule than normal so I can take less time for our vacation.  The good news is that we're going to be gone over a local holiday, so I am only missing one day of work - I'm planning to work extra so I only have to take 4 hrs of vacation for that day)
• Vacation! (woo!)
• Call Surgical Center for Surgery Time (I get to do this while we're out of town.  Hopefully, I'll get a time first thing in the a.m.)
• Come home
• Surgery
• 1 week: off work (hopefully not more)
• Nose apt to get stents removed (2 weeks post-op)
• 3 weeks: no heavy lifting
• 6 weeks: total healing process
• 12 weeks: Eye Stent removal

So that's what is happening.  I actually find it very relaxing to have it all laid out like that.  

Here is my other cat for balance.  She will not eat anyone's face.  She's very good at hiding.  In fact, she is so good at hiding, my dad doubts her existence.  She's actually very sweet though. And fluffy.

*I considered not mentioning our vacation because every now and then you hear about someone who’s house was broken into because they announced to the internet that they were going to be gone for several days.  But anyone who is thinking of robbing us while we’re gone - I have a fierce cat who will eat your face!  Also, I have people checking in on my house (well, checking in on my cats at least, but they are at my house) regularly.  Also also, I don’t really have anything worth stealing.

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.  

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.

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!