Wednesday, December 9, 2015

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!

Thursday, December 3, 2015

I am Jack's Weird Throat

I had an appointment with Throat Doctor today, and I'll get to that at the end of this post.  First, let me tell you about the deal with my throat.

Once upon a time, I thought I had severe asthma.  So I went to an asthma and allergy specialist.  He had me breathe in a tube and did a chest x-ray and decided that I did not have asthma, but that there was something wrong with my vocal chords. He sent me to an ENT.

The ENT stuck a tube with a camera on the end in my nose (because I also have a bunch of nose junk he needed to check out).  When he was done looking at my nose, he pushed the tube farther down until he could see my vocal chords.  Let me take a second here to say that it was one of more uncomfortable things I have experienced.  He had me hum and stuff to make sure my vocal chords were ok (they are), but he could pretty clearly see that the problem was just below the vocal chords.  Subglottic Stenosis.  This ENT referred me to Nose Doctor because he didn't feel like he was equipped to handle my super crazy problems; Nose Doctor referred me to Throat Doctor because these guys are very specialized, I guess.

So what is subglottic stenosis?  In English: sub = below; glottis = vocal chords; stenosis = abnormal narrowing.  So, what that means, if this is a normal throat


My throat looks like this:

 

As you can imagine, that makes it a little hard to breathe.  If you want to know what it's like, find yourself a straw, cut about an inch off one end and hold it in your mouth.  Now, go about your business just breathing through the straw.  You can get by doing most things as long as you don't exert yourself too much, but it's very very easy to get winded.

Subglottic stenosis can be caused by a lot of things, including GPA.  It's a fairly rare symptom of GPA though, and can be a little weird.  It's not necessarily indicative of a full systemic flare.  Also, the presence of scar tissue there can mean that the little evil granuloma monsters have come and gone.  Also, it doesn't always clear up when the GPA clears up.  So sometimes there has to be surgery.  Basically, they cut into the scar tissue with a laser and then inflate a balloon to dilate the opening:


Hopefully I won't have to do this. My appointment today was very promising. In fact, I have a picture for you of my very own throat:
This is a side by side comparison from today (left) and my first appointment with Throat Doctor. Here it is again with more stuff drawn over it:

Clearly, there has been very significant improvement. I'm no longer breathing through a drinking straw. There is still some room for improvement, and there was a bunch of mucus down in their because my nose is messed up and I have a lot of post nasal drip (you can see a little string of it in the picture from today). But this is really awesome. It's hard evidence of major improvement. I'm extremely pleased. 

I have an appointment with my rheumatologist on Monday. I'm sure he'll do a million blood tests and we'll find out if the rituxan infusions did the trick or if we need to try some more drugs. I'm optimistic, especially after seeing so much improvement in my throat. 





Tuesday, December 1, 2015

Miss Me?

Yeesh, it's been two weeks since I last wrote.  Sorry.

I also totally dropped the ball on my "30 days of Thanks" project too.  I stopped that on the 22nd... so I missed 8 days of stating something I'm thankful for.

A couple days ago, I acknowledged to myself that it has been a long time since I blogged, and I asked myself why.  The answer is complicated, and I will try to explain, but I think my lack of writing is symptomatic of an over-arching depression... stress... disappointment ... bad-ish mood.

Last I checked in, I had gone back to work, and then taken Wednesday off to recover from going back to work.  I'm still back at work, and it's going... fine? I guess.  Here's the thing, getting back in the swing of working is really good.  It's a step in the right direction.  And, as I've mentioned before, I really like my job.  And this week I'm doing really well - I might even be able to work my full 30 hours.

But

It's really really really hard.

I don't mean work itself, really, it's just the routine.  Or lack there of.  When the time came to go back to work, I was just really getting to a good place at home - I had enough energy to be somewhat productive, and enough time to organize and plan what I could do.  I might have taken me all day to clean the kitchen, but I could do it and then I would have a clean kitchen.

I went back to work with the idea that, for the first couple weeks anyway, my goal each day, my entire to-do list, would be Work 6 hours.  Anything else would be a bonus.  That has been an accomplishable goal, but I would really like to do the anything else as well because I like being able to take care of my house and my stuff  (I'm getting there, yesterday, I did dishes after work. Like a person who is not exhausted).

I would also really like to do something about the prednisone weight, and the extra weight I had before prednisone.  Before I went back to work, I was doing a little bit of exercise every day - it was usually 10 minutes of Yoga or a short walk.  I wasn't on my way to running a marathon or anything, but I felt like I was proactively working toward fixing something I was unhappy with.  I definitely don't have the energy to exercise and work.  Also, feeding myself is something really hard so there have been some not so great dietary choices made since I went back.

Basically, in some ways, going back to work has affected me in almost the same way being really, really sick did; I can't do anything and it's really frustrating!  There are also things for me to stress about that I don't really want to write about right now.

I think there was a part of me that irrationally thought going back to work = getting back to normal.  It's kind of funny how I can know that this process is going to be super long, but also be so disappointed that this process is taking so long.  Disappointment.  That's the darkness that has tinged my last few weeks.

There's also this thing that makes me say "what the hell, self?"  Before I had a doctor tell me "You definitely are having a relapse"  I was fine.  Well, I mean, I couldn't breathe a lot of the time, but I was fine.  I had energy and focus like a normal person.  I just couldn't breathe, which is surprisingly easy to work around.  It wasn't until I was officially sick that I really felt sick.  Part of that was side effects from the prednisone.  I can't help but wonder how much my brain had to do with it though.  Do I feel sick because I know I am sick?  Did I actually feel sick all along and was actually just really good at ignoring my symptoms?  If that's the case, why can't I ignore my symptoms now?  Ok, I know the answer to the last question: because it would be counterproductive and probably slow down the healing process.

The truth is, things really are getting better.  It's slow progress, but we knew it was going to be.

Wednesday, November 18, 2015

Minor Setback

I'm not going to work today. 

I am far too tired. But tired is too simple a word for how I feel. Here is a breakdown:

I am lightheaded

My limbs weigh 300 lbs

My sinuses are full of stabbing

My brain is .... So you know the difference between running in waist deep water and running on dry Land? That's how my brain is working; it's the one in the water. My processing power is like Windows 95. 

My eyes are resisting focusing on anything for very long 

I have a headache that may or may not be different from the stabbing in my sinuses. 

I think that's all. So I'm taking today off. Hopefully I will recover enough to work tomorrow and Friday. Now, I think it may be time for my third nap of the day. 

Oh. Wait. My nose just started bleeding. That's fun. 

Today sucks. 

Tuesday, November 17, 2015

Hi Ho Hi Ho

It's back to work I go... went.

Yesterday was my first day back to work after two months of being home sick.  This is a pretty major step.  It's also a whole new environment to navigate because while I am feeling well enough that I don't have to stay at home all day, I am still unwell enough that I can't really throw myself in to super-librarian-do-all-the-things mode.

The nice thing is that I am not actually a full time librarian - I am supposed to work 30 hours a week, which is kind of a perfect amount to work weather or not I am sick.  Before I left, I was working three 8 hour days and one 6, with an extra day off, which is really nice because there's a lot a person can get done with a day off in the middle of the week. For now, I'm not even going to try to work a full 8 hours.  So I'm shooting for five 6 hour days.

So far it's gone... about how I expected it to.  By the end of my six hours yesterday I was completely exhausted. I didn't sleep very well Sunday night though, and I'm sure that didn't help things at all.  Today I am still very very tired after working, but it's a little better.  I had better sleep last night (probably because I was exhausted) and I came in to work a little later, which was very nice because it took me a long time to get going this morning.

The last hour at work today I was pretty much useless.  I think I lost my train of thought and stared at the wall behind my computer for about 10 minutes at one point.  The good news is that we're about to start the slower season in library land.  We don't have as many programs in December, and book ordering is finished for the year, so I am really able to take my time easing back in to things.  And I have the best boss in the whole world who is letting me be super flexible with my schedule and with what I need to get done at work.

It can only get better from here too (hopefully).  One really nice thing about this change is that it really gives me more tangible way of assessing how I am feeling.  Like when I get through 6 hours and can go home and still do things there, that will be a real, almost measurable, sign of improved health.

One major problem though, my sweet kitty is very sad that I am not home all day to play with her anymore.  You should hear the sad kitty noises I got when I walked in the door yesterday.  Sweet Jinx has a very sad life full of disappointment.  My other kitty, Yeti, hates me a little and is probably thrilled to have the house to herself now.

Wednesday, November 11, 2015

Live from the Infusion Center: the last!

I'm about to head out to the infusion center for my last treatment! I will be updating this post as things happen. Or, since not a lot really happens while I'm there, as I think of things to say. Stay tuned, or whatever the Internet equivalent is.

9:10 - initial blood pressure: 121/76 - for whatever reason the first one is always a little higher. Waiting for the nurse to come in to start the line and give me my tylonal, benedryl, and steroids. 

9:30 - I'm all hooked up. The pharmacy was super fast getting my bag ready so I hardly had to wait at all. So we're going at 100 ml/hr right now. My fancy bandage thing is orange. Bright freaking orange.

10:45 - Something happened!  I had updates and they just vanished.  Strange.  They weren't very exciting, I guess, but I did them.  There was one at 10:00 and at 10:30 when my rituxan drip ramped up. I also had an update about the blood pressure machines.  So, I have been live blogging more lively than it looks.

Anyway, my blood pressure is now 117/66.  There are two kinds of BP machines here - one blue and one white.  I like the blue ones better because they make a happy little beeping noise when you turn them on.  I have a white one in my room today so no happy beeping noise for me.  Apparently, the blue ones are actually old and are starting to get worn out.  They aren't made any more so there aren't parts to fix them, so they are slowly going to disappear and be replaced by white ones.  Soon there will be no happy beeping noise for anyone.  Sad day.

10:50 - BTW, I'm getting infused at a rate of 300 ml/hr right now.  It'll go up in about 10 minutes.

11:00 - I told you it would go up in about 10 minutes.  400 ml/hr.  I have a little over 400 ml left in the bag.

11:10 - I have a roommate now.  Apparently there's a room down the hall with a whole bunch of people in it - visitors for the person getting stuff.  Roommate was commenting on how strange that is as she came it and we chatted about it a bit.  I like having my incredibly attractive fiancĂ© Matt with me, but I wouldn't want more than that.  Sitting through the infusion is kind of a waste of time for visitors.  I mean, there's not really a lot to do here.  Matt is working on homework and fetching things for me when I need stuff.  Not only that, if you have a bunch of people crammed in your room, they're bound to get in the way.  The center is not set up for large crowds.

11:17 - Roommate is getting her stuff in a bottle.  A glass bottle. I wonder if the pharmacy ran out of bags?  Glass seems like it must be much harder to use - for one thing, there are lots of bubbles at the top, for another, when it gets down to the end, I think it must be hard to get those last drops out.  I will not find out though because I'll be gone before she finishes.

11:25 - BP is 110/7 - I have about 200 ml left.  

11:48 - I just want to take a second to say that the nurses here are pretty great. They've all been very friendly and nice. They're very helpful too and happy to bring things (like blankets or drinks or snacks) if I ask for them. These are good people. 

11:55 - I'm gonna nap time now. I bet we soon and I start to snooze they're going to bring by sandwiches. But we're not going to eat hospital lunch, we're going to get something after. 

12:04 - just kidding. I'm not going to nap. I'm going to read and knit. I'm almost done anyway. See: 

12:15 - all done! Final bp is 117/56. Now there's not much to do but start feeling better, right?
.

Monday, November 9, 2015

Third State of the Cassie Address

I had an appointment today with the Nose Doctor.  It wasn't really a very productive appointment, but I'm glad I went.  He did stick a camera up my nose, and this doctor has monitors so his patients can see what he's looking at, which is cool.  So, yeah, I got to actually see inside my nose, and it is not pretty.  It's really bad.  Once you get past the tip of the nose, pretty much every surface of my nasal cavity is covered with crusty gross stuff.  Nose Doctor tried to scrape some off, but stopped because he started some bleeding.  It was pretty bad.

As horrible as that was though, my nose feels about 300 times clearer than when I went to the first doctor back in, when was it? August?  For the most part, I can actually go through the entire day without being forced to breathe through my mouth because my nose is completely blocked off.

Nose Doctor gave me an option of a not-even-really-surgery procedure and basically scrape all of the junk out of my nose.  This would tear things up a little bit.  They would then put in some flexible rubber supports so that as the mess heals, we can make sure that the sides of my nasal cavity don't stick to each other.

I decided against that for now.  I want to give the rituxan more time to work, and I'm optimistic that as the GPA is cleared up, my nose problems will get better.  If they start to get worse in the next few weeks, or, if I get to remission and they aren't really better, then we'll see.

I also asked him about fixing the saddle nose.  He basically said that it's not something we should even think about doing until I'm securely in remission, which makes sense because it's kind of a Big Deal surgery (would probably involve using a piece of my rib to build my nose) and we definitely don't want to go through it just to have GPA destroy it immediately after.

So that's a very detailed report on my nose.

As for the rest of me....

This is my last week of leave.  I'm planning to back to work on Monday, and I'm a little anxious about it.  I'm also really excited.  The anxiety comes from not really having any idea how well I'll feel from one day to the next.  Last week, I was too tired almost to even move on Wednesday, Thursday and Friday.  How much of that was because of the infusion?  How much of that was because I really tried to push myself Monday and Tuesday to get a lot done?  Probably most of the fatigue was from the infusion, but I really have no idea how much going to work is going to affect me.

My goal is to work a full 30 hours.  I am not really going to try to do anything else next week.  If I can, then that will be a super awesome bonus.  If I can't get through the full 30 hours, that will also be ok.  I'll deal with it.  If everyone could send me good vibes and good luck next week, that'd be great.

I'm excited to go back to work for many reasons.  Mostly, I'm looking forward to regaining a part of life that has nothing to do with being sick.  I'm looking forward to wear real pants (I've been living in sweat pants, pajama bottoms, and leggings).  I miss seeing people.  I miss seeing the books too.  I mean, I have book here at home, but libraries are way bookier.  Also, I have a 3D printer to play with at work.

What else?

My last infusion is Wednesday.  I will live blog it.  I don't know if anyone is really enjoying those, but I'm kind of having fun writing them.  I have no bruise from the last one.  I'm thinking I was allotted X amount for bruising for these treatment and the first one got greedy and took it all.  Yeah, ok, it doesn't actually work that way.  What probably happened was that I reduced my prednisone (side effects include easy bruising) and don't bruise quite as easily anymore.  Watch, because I said that, my entire arm will be black and blue after this last one.

I went through my closet yesterday and tried on almost everything and put things that are too small away under my bed.  Probably 70% of my clothes are under my bed.  I've gained about 15 lbs since this thing started, which isn't too bad.  I'm not happy about it though, and am working on figuring out how best to fix it.  This is a subject that is complicated enough that I will probably dedicate a whole post to it.

I think that's all I have to report at the moment.  And it's later than I thought.  I need to make dinner.

Saturday, November 7, 2015

What is a Cassie?

<---- I stumbled across this on Pinterest the other day.  It rings true, but is definitely an over-simplification.  Identity is an extremely complicated creature, even more so when you throw chronic illness into the mix.

Imagine your identity as a building.  The foundation is made of some very solid personality traits that will probably never go anywhere. You spend your life carefully picking out just the right bricks to build the walls of your building.  When you get the walls done, you can sometimes remodel the inside, or paint the outside or something.  You end up with a strong standing structure that you're pretty happy with.

Big Sickness is a wrecking ball.  It knocks your entire building down and then delivers a pallet of cheap, ugly, cinderblock made of Sick and Tired and Weakness and Wheezy and so on.  You have to have a building.  So you start to rebuild with the materials you have.  It's not ideal, but you have to start somewhere.  Eventually, you can go out and get better bricks.  Maybe some of the old ones have survived the wreckage and can be used again.  It takes time to rebuild.

The truth is, everyone is constantly changing their buildings - throwing out old bricks and replacing them with new ones.  And in many ways having to start over can be a good thing - there are bad bricks that I can leave out of my building as I start erecting new walls.  I like to think I will be able to find most of my good bricks in the dust - and if not, I'm sure I can find fresh new ones to replace them.

I don't want to be defined by my illness.  Yes, it's a big part of who I am, and how I got to be this way. And right now I can't do much of anything other than be sick. But I don't want it to be the big eclipsing trait that people associate with me.

Sometimes talking about my illness feels very much like coming out. Like it or not, telling people about my health problems often colors how they think of me or how they treat me.  When I'm actively sick, like now, it's important to let people know that I have major limitations, but there's always a fear that they will continue to treat me as weak and incapable even when I'm feeling better. I work hard to not be limited by my illness (sometimes maybe I push myself too hard).

A final note about identity: I'm reading How To Be Sick  by Toni Bernhard - it takes buddhist philosophy and practices and applies it specifically to the life of the chronically ill.  Anyway, relevant to this post is the concept of no-self; that there is no set, permanent Self and that identity is fluid from second to second.  It's a concept that I'm finding some comfort it.

I also want to share these paragraphs:


She goes on to explore the question of identity and explain how she regularly asks herself "Who am I?"  That's all very good, but what resonated most with me is "there is sickness here, but I am not sick."  That has become a kind of mantra for me since I read it and it has definitely made the identity struggle easier.


Wednesday, November 4, 2015

Live! From the Infusion Center the Third

Well, I'm back here with a tube in my arm.  I got in pretty quickly today, which was nice.  I'm in a different room than the last two times and this one has a much smaller window.  I also didn't get a choice of a bed or chair, so I'm in a chair.  It doesn't really matter; the chairs are fine, but I did decide last week that I like the beds better.  Oh well.

I'm a little tired and grumpy today.  I was going to stop and get a delicious coffee drink, but I ran out of time, so no coffee for me.  I think I just woke up with fewer spoons than usual too.  That's a bad sign because these infusions tend to wipe me out anyway.  Oh well.  I don't have anything else to do today.

That's not true, exactly, I have plenty of things I want to get done.  We'll see if I actually get to them.  
Anyway, I'll update again as things get going. You know how this works by now: I'll update this post until I stop. Check in occasionally or refresh or whatever.

9:45 - I'm all hooked up and running.  Today I get a purple bandage thing

10:00 - There's a guy in here today who has come in every week for the last 8 years for an infusion of something that stops his lungs from collapsing.  He's so old-hat at this that he can pretty much do the whole thing himself.  I just watched him take down his bag, squeeze out the last of the medicine, dispose of everything, and flush his line.  He did everything but take the IV out of his arm.  It was kind of fascinating to watch.  All the nurses here know him (because he's here every week) and joke around with him.  

10:11 - Apparently most of the nurses here do three 12 hour shifts every week.  That seems like a really long day, but I bet it's nice to have 5 days off.  My drip just increased to 200 ml/hr.

10:31 - Matt is going to bring me coffee! Hooray.  I think I'll try to sleep a little until he gets here.


10:45 - just ramped up to 300 ml/hr

11:00 - I have coffee!!!

11:15 - 400 ml/hr and there's only 400 ml left in the bag.  I'll be done in an hour.  I like this kind of math, it's easy!

11:30 - Yesterday it was super windy and our power flickered out for a second sometime around 10 in the morning.  For some reason, that knocked out or internet for the entire day.  When I left the house this morning, it was still out.  While I was stuck with only my data plan on my phone (hashtag first world problems), my GoFundMe goal.  That's super exciting. Yay me!  If anyone reading this is thinking "oh, well, I was going to give her money, but now I don't think I will,"  please do whatever you want.  I can still definitely use donations though.  I set my goal amount thinking I would only be missing one month of work.  I also set it higher than just one month's salary because I didn't know if I would be able to go back to work after that first month and being sick is pretty expensive.  As you all know, I haven't been able to go back to work.  Anyway, my point is, I'm so grateful to not have to worry about money and paying bills/mortgage while I'm worrying about being sick.  And there's still plenty of financial things to worry about.  So if you really want to donate to my cause, you can and I will super appreciate it.  Or, if you want to help someone who hasn't met their goal already, my friend Stephanie has her own campaign to cover some pretty gigantic medical bills.


11:40 - my blood pressure is 112/62

12:00 - lunch time 

12:15 - I have about 50 ml left. I'll be out if here in no time. 

12:24 - Final bp 113/64. Last drops are going in now and then I'm heading home for nap time. 

12:45 - all done and at home. It all went well. I'm hoping at this point to start feeling better. It's possible I am already feeling better - yesterday was a really good day. Anyway, that's it for my third infusion. One more to go and I'm done. Woo hoo!
.

Monday, November 2, 2015

Miscellany with Pictures.


Today I decided to push myself to see if the limits of what I can get done have changed.  Actually, it would be more accurate to say that I wanted to see what my limits actually are right now.  I haven't really been keeping track of how much I can do lately because it's a very subjective, not very quantifiable thing.

Anyway, today I pushed myself and got some things done.  I ran out of energy around 2:00 and then did one more thing.  I spent the last three hours staring at the wall because I'm so exhausted.

I am going to go to bed in a minute, I promise.  I've made myself some tea, and I'm actually in bed as I'm writing this.   I really wanted to update this blog thing today though.  There are full comprehensive posts that I plan to get to, but today I am too tired to string multiple cohesive paragraphs together.  Instead, I give you a bulleted list of random updates and thoughts:


  • You might be wondering what I did today that was so exhausting.  Well, I'll tell you.  When I woke up I did about 10 minutes of really easy yoga.  I've decided to start moving more.  After breakfast, I drove out to the library where I have been not working for the last month and a half.  It was nice to get out there and talk to co-workers.  It took a lot of spoons, but I've very glad I managed it.  I missed my boss though, which was too bad.  After I left, I got some lunch and then went grocery shopping.  Grocery shopping is way harder than any of you think it is.  I probably should have stopped doing things after that - I struggled to get up the stairs to our second-story condo from the garage with the groceries.  I put the groceries away, and took a nap.  Then I made curried butternut squash soup with all sorts of veggies and chicken.  That was it for me.  I hope I didn't do so much that I'll be completely useless tomorrow.
  • As of right now, I am only $50 away from reaching my GoFundMe goal.  I know some amazing people who are super generous and fantastic and many other positive adjectives as well.  A handful have even given twice, which is just... words expressing very large good
  • My vocabulary is suffering from tired.

  • I promised you a post about my weird throat a while ago.  I had great ambitions of doing a white-board story video with a voice over.  I filmed the white-board part, but have yet to edit it or do the voice over.  I do still want to do the post, but I think maybe I'll just write about my throat and include pictures (pictures make it easier).  Maybe screen shots from the video, maybe new pictures.  We'll see.

  • Speaking of pictures, here are two:
This is my face when I very first started taking prednisone.  I had some vague notion of taking a selfie every day and documenting the changes my face went through because I knew there would be changes.   Prednisone just does that.  Common side effects include weight gain and moon-face.  Last time I was on tons of prednisone, I gained lots of weight and have very moon face.  This time I've gained about 15 lbs, which isn't too bad.  I did not take a selfie every day to document the change. But...

This is what my face looks like now.  It's gone a bit round, but not super moony.  And I have grown a second chin. I'm not very happy about it.  I'm down to a pretty low prednisone dose now though and I've decided to do something about it - the second chin and round face and extra 15 lbs.  Like I said earlier, I'm determined to start moving more.

  • After looking at that picture just now, I have decided that I definitely need to do something with my hair.  Maybe something bright and colorful.  That's one way to inject vitality in to my life.
  • Tumblr.  I actually created a secondary tumblr blog just for being sick stuff.   It's mostly to reblog spoonie stuff without overwhelming people who follow my main tumblr.  Also, I thought it would be a good way to get my story out to other spoonies.  
  • Something I'm doing on my just-for-being-sick tumble is that thing that people do where they post one thing their grateful for every day in November.  I'm doing that.  It's good for brain times.
  • Ok, I think I'm too tired to write any more.  Words are starting to get the better of me.  It might be really funny to see what comes out of my fingers at this point, but I would like to keep my reputation as a mostly articulate, educated person.
Good night internet!  I might try to post tomorrow.  If not, I will be doing another live blog on Wednesday for my infusion.

Saturday, October 31, 2015

Internet Spoons

The Internet is a magical place, Tumblr even more so.  In this particular instance I'm refering to the magic of very specific communities that form around very specific experiences, opinions, or fandoms.  For some reason, based just on my own experience, Tumblr seems to be really really good at this.  The niche communities on Tumblr are varied and easy to find, and they have a lot to say.

So I've been reading a lot of stuff on Tumblr with the #spoonie tag.  Granulomatosis with Polyangitis is too niche a community, but general chronic illness (aka Spoonie) is very supportive and relatable. It's really nice to see a post and say "Yes! This is exactly!" or "Thank god I'm not the only one in the world who has to nap after taking a shower!"  There are a couple spoonie blogs that I'm following now that are run by really wise and supportive people.  It's great.

It can also be ... not great.  There are a lot of people in the spoonie community that have it so much worse than I ever will.  I have the privilege of knowing that my current state of not being able to do anything is temporary.  My disease will go in to remission and I will be able to live a mostly normal life.  There might be slightly more maintenance that I have to do (which I should have been doing all along, and which probably could have prevented reaching this point), but we all have to do a little more maintenance as we get older anyway.

I also don't have to deal with pain.  Not much anyway.  The junk in my nose gives me really bad sinus headaches that could almost be considered migraines.  But that doesn't happen every day.  There are lots of spoonies who spend every waking moment in constant pain.  All I have to deal with is fatigue, and not being able to breathe very well.

Reading about these experiences triggers many different reactions.  Sometimes it makes me appreciate the less-severity of my own situation; it could be worse, thank goodness it's not.

Sometimes it terrifies me to think about how much worse it could be.  This is something I faced when I was first diagnosed too.  Reading about GPA can be really scary because there are cases where things get really bad and treatments don't work and people are in very bad shape forever and it never gets better.  Those situations make me want to hide under the covers and knock on all the wood I can find because I could easily be one of those people.  I'm not.  But I have the disease that could put me there.

Sometimes I feel like I'm not really qualified to be a part of the chronic-illness community.  My situation could be so much worse, and I sometimes feel a little invalidated. I have a light at the end of my tunnel, and a clear path to get there.  Yes, it's going to take a lot of time and effort, possibly a surgery or two, but I will get there.  I will have my career.  I will have a social life again.  In a few months, or a year, or however long, I will be living my life mostly outside my condo (probably.  My condo is really nice though, so I might stay here a lot too).  My prognosis is positive enough that, after reading how others suffer, I sometimes don't feel like I have the right to feel bad about myself.

This can actually be kind of dangerous because it creates a mental state where I tend to minimize the signals my body is sending me.  I think "oh I'm not really that sick" and then I push myself and either over do it and crash really hard, or I'm disappointed when I don't get things done that I wanted to do.

My incredibly handsome fiancĂ© Matt has actually been my saving grace when I lose myself in the #spoonie internet.  He reminds me that other people's experiences don't invalidate my own.  He also reminds me to be careful and not push myself too hard when I get it in my head that I am going to take on a gigantic to-do list.

Like anything else on the internet, the chronic-illness community can be helpful or harmful.  Everything needs to be taken with a grain or two of salt, and that's perfectly fine.  That's just sort of how these things work.

Wednesday, October 28, 2015

Live from the Infusion Center the 2nd

Here I am again. Getting my second dose of GPA killing stuff. Like last time, I'll just update this post periodically, so check in once in a while or hit refresh or whatever. This time I don't have my extremely handsome Matt with me, so maybe I'll post more. Or maybe I'll sleep and post less. You'll just have to wait and see. And, by the way, Matt isn't here because he has an interview this morning, so send us both good vibes. He's bringing me a post-interview treat later. He's very nice and incredibly handsome. 

9:05 - initial blood pressure is 137/70; a little higher than last time, but I'll fix it. I enjoy using my mental super powers to lower my bp. 

9:32 - I have the thing in my arm. Not hooked up yet, but the prep stuff is done. My nurse and I talked about shoes while she shot me up with a steroid. 

9:38 - I'm all hooked up and going. 
We get to do a fast ramp today! Last week we started at 50 ml/hr and bumped it up by 50 every half hour or so. This time we're starting at 100 and jumping by 100. I'll be out of here in no time. And by no time, I mean a few hours. 

10:07 - bp 119/68 - I told you I'd lower it.  Also, we're up to 200 ml/hr. Speeding right along here.  

10:45 - my incredibly handsome Matt is here with delicious coffee drinks! We're at 300 ml/hr now and the bag is halfway done. The room I'm in today is full. Last week I pretty much had the place to myself. I was going to sleep, but with all these people and the nurses coming in an out, it wasn't going to happen. 

11:00 - bp 113/73 - my incredibly handsome Matt stole a sip of my coffee while my blood pressure was being taken. How rude. Good thing he's incredibly handsome and easy to forgive.

11:10 - we just ramped up to 400 ml/hr and there are 400 ml left in my bag. I'll be out of here in about an hour. That's nice. Then I can get lunch and go home and take a nap. I like this fast paced medicine thing. I mean, the infusion center is a fine place, but not nearly as nice as home. 

11:20 - I sent my incredibly handsome Matt away. He's going to stop at the Rheumatologist's office and pick up my FMLA paperwork. I dropped the paperwork off on Monday and they said it would get done that same day. Right. Today is the last day my doctor is in that office. For the next couple days it will be even more difficult to track him down. Plus, I need to update my FMLA stuff so that I can, you know, keep my job. The point is, it's important to get that stuff, and it's really nice that my incredibly handsome Matt is willing to go get it for me. He's really great. I should write a post just for him. 

11:32 - I just finished my book. In probably have about half an hour left of infusion.

11:45 - for some reason tumblr will not update while I'm here. I guess it's a weird thing with the wifi? It's too bad though because tumblr would be a good place to go for entertaintment for the next half hour. Or 15 minutes. 150 ml. 

12:09 - I just wrote a whole paragraph about sleeping and chairs vs. beds here. It crashed the blogger app when I tried to publish it and I lost the whole post.

12:17 - final bp 116/78 - the last few drops are going in as I type this. 

12:22 - out the door

12:39 - no one said I had to stop updating just because I'm done. I'm going to re-create my chairs vs. bed post when I get home. I'm sure you'll all find it fascinating. Now I'm picking up some lunch. There's a Noodles and co. across  the street from the hospital. I get a rice crispy treat because treats go with medicines. 

12:46 - here's a picture of my lunch. And my bandage. It's black today. Arrakis, you can vote on what color would have been better. 

2:03 - this will be my last update for the day. So about chairs. What I said in the update that was deleted was basically this:

I dozed a little but it's hard to sleep with people coming and going and making all sorts of people noises. Also I chose a recliner chair today instead of a bed. I thinkin like the beds better and will probably go with that from now on. Other people seem to prefer the chairs though. The center actually ran out of chairs today and there was a guy in my room who was suck with a bed until someone in a chair left. So really, by choosing s bed from now on I will be helping other people out as well. 

There. Wasn't that totally worth the wait? Now I'm going to send in my FLMA paperwork and then take a nap. Infusions make me tired. 

Saturday, October 24, 2015

Mini State of The Cassie Address

First infusion went pretty well.  There were no problems with the infusion itself.  I was super duper tired yesterday, and running at half-spoons today, but that's not completely unexpected.  That fatigue could be either from the infusion or from the GPA, who knows.

I was kind of hoping to be lifted up and energized by finally actually getting some treatment.  Unfortunately, by optimism and patience is kind of wearing thin.  I know I'm on my way to getting better, but I just wish it would go faster.  I really really really want to go back to work, but I don't see how that's going to be realistically possible for another 3-4 weeks at the earliest.

And that complicated things.  I'm starting to worry about money again.  The goal I set for my GoFundMe (which randomly posted to my Facebook yesterday) will cover my lost salary for another couple weeks, but I'm starting to wonder if I should up the goal.  I'm also feeling bad now about asking people for more money because so many people have been so generous.  But being so sick is so expensive, and, well, money is stressful and stress makes healing harder.

To also complicate things, I totally slacked this week about calling my doctor to update/extend my FMLA paperwork because originally he just filled it out for 4 weeks and now I need it for another 4.  And because he's moving in a week, he's hard to get a hold of now. My excuses: I was hoping for a miracle burst of wellness after my first treatment - hey denial is a nice place to hang out sometimes.  And then after the treatment I was ridiculously tired and brain foggy.  Seriously, making a phone call was beyond my reach.  I'll take care of it on Monday.  Can I just say that it's totally not fair to be expected to be a responsible adult and be sick at the same time. It's very hard.

But, there is good news.  The complicated insurance issue (with the doctor moving to a hospital that is not covered) is, well, not resolved, but I'm ok through the end of the year.  Basically, the insurance company is still working out how they're going to handle the whole thing, so they're promising coverage through December, and then we'll see after  that. 

Friday, October 23, 2015

Check Out My Sick Bruise


This is the bruise on my arm from the IV I had Wednesday.  It might look like my arm is just dirty, but it actually is a long, thin, bruise.

Bruises from needles is something I got very used to the first time I was sick.  I had 300 million blood tests and 4 times out of five there would be a bruise.  Once or twice the phlebotomist would make a real mess of sticking a needle in me - they would dig around for minutes trying to strike a vein.  It was uncomfortable when it happened, but the bruising afterwards was incredible.  The worst time was a draw from the crook of my elbow and, well, you know how messed up Jared Leto's arm was by the end of Requiem for a Dream?

Ok, it wasn't actually that bad. But I did have lots of bruises from blood tests and from infusions of various kinds.  That's just kind of what happens.

I don't remember having a bruise quite like this one though.  I don't know if you can really see it, but right at the very top there's a  little red  dot at the top of the bruise.  That's where the IV actually went in my arm.  So the rest of the bruise actually follows my vein.  I think it's fascinating.  And, like I said, I don't remember having a bruise quite like it before.

I dug this drawing up for comparison.  This is something I drew in high school, probably when I was home being very sick.  I don't remember if I was in an art class at the time... actually, I guess if I think about it, I can confidently say that I was not.  After doing my time in the hospital I dropped all but 3 of my classes.  So by the time I drew this, I was just taking AP Calc, Advanced Creative Writing and... something else.

Anyway, it's a self portrait of my hand.  I was kind of obsessively painting my nails at the time, and they were really long because a) I wasn't well enough for any kind of activity that would cause a person to break a nail and b) prednisone seems to make them grow fast and strong for some reason.  I think that bruise was from an IV, but I can't be sure.

I also used to play connect the dots on the back of my hands with all the scars from various needles.

I like these bruises and scars.  Granulomatosis with Polyangitis is one of those illnesses that is pretty much completely invisible.  Having those marks, and even, I guess my weird collapsed nose, make me feel... validated?  They remind me that I really am very very sick, that my body is not functioning at full capacity and that I really truly can't do things; I'm not just being incredibly lazy.  Strangely enough, this is a reminder that I really do need.

The thing is, when I spend the day doing basically nothing, I feel pretty normal.  Granted, I can't breathe very well, but I've gotten pretty used to that.  So I have this feeling like I'm ok, so I try to do something - shopping or cleaning or something else pretty basic - and then I crash like a ton of bricks and remember that I really am very very sick and I can't do things.  Then the cycle starts all over: I take it easy until I start to think that I can get stuff done, and I push myself just a little, and I crash.  And then you get in to the whole balancing act where I try to do just enough that I won't suffer for days because I decided to clean the kitchen, but some days I have a kitchen cleanings worth of spoons, and some days I have just enough spoons to take a shower but drying my hair is beyond me.


Wednesday, October 21, 2015

Live! From the Infusion Center!

Right, so, I'm about to head over to the infusion center to start pouring Rituxan into my veins. As I said yesterday, I'm going to live blog my very long, hopefully boring (because if nothing exciting happens, that means things go smoothly) treatment.

Here's how this is going to happen: I'm just going to periodically update this post here. I'll include the time, and my blood pressure - because I'm sure they're going to be monitoring that because that's what they do when you do stuff like this- and any other information I think needs to be included. So, to follow my progress, just hit refresh. Also, if you want to make this an interactive blog party, contact me via social media of some kind, or leave a comment on this blog. It occurs to me that I could do all this on Twitter and it might be easier. I even have a Twitter. Maybe I'll be redundant and live tweet my live blogs. You can tweet me @CassieTheGreat. Anyway, stay tuned. 

9:03 - Waiting in the waiting room. Turns out infusion services is in the cancer center if this hospital. I had assumed it would be in outpatient services, although is makes sense for it to be here because most infusions are probably cancer related. I walked in to the building with two women in turbans. I irrationally felt like I was being because I'm wearing my hair down and curled. 

9:12 - bp 119/78 - I have good blood pressures. 

9:48 - I have a tube in my arm. It's not hooked up to anything yet. Also in prep for the rituxan, I've been given Tylenol and benedryl and a steroid. Benedryl may either make these updates extra fun, or put me to sleep. Maybe Matt can take over if that happens. He's here to keep me company and hand me things. 














10:00 - I have a bag of stuff. Matt is helping by poking my face. I don't really know how that is helpful, but he insists. 



10:35 - bp 112/70 - still have a tube in my arm. The way this infusion works is called a slow ramp. So they start out dripping in just a tiny bit at a time, then up the flow every half hour or so. I started out going at 50 ml/hr. Now I'm up to 100 ml/hr. Very exciting. I'm watching Netflix and knitting. And I'm a little sleepy. 

11:04 - they're not checking my blood pressure very often, which is fine. I'm up to 150 ml/hr. Moving right along. 

11:39 - We're at 200 ml/hr, cruisin' right along. Here is a picture of my ring if power: 
Isn't it pretty? Can't you just see the magic healing juju radiating off of it? No? Huh. Must be something wrong with my camera. 

I brought all sorts of entertainment with me but I can't decide what if anything I want to do now. I might nap. Or I might send Matt away for some food. Lunch is entertaining, right? I'm actually not all that hungry though. I think napping might be the way to go. The IV drip thing makes for good white noise. 

11:55 - nap times 

12:00 - just kidding. Lunch time 

12:30 - 300 ml/hr. Two more ramps to go; the final stage is 400 ml/hr. I am sharing the room now with a very nice older couple. He has leukemia, which is sad, but today is his last chemo session for a while, which is good for him. Big bad sicks are horrible. I wish no one ever got any of them. 

12:50 - The bag is visibly emptier, and I guess it's emptying faster and faster now. Matt asked if I could feel it, and the answer is no. That reminded me of when I was in the hospital with this before and had to have a blood transfusion because I was so anemic.

 It was near the end of my 10 day stay and they basically came in and said "oh you can't go home because you don't have enough blood." And then they came in 20 minutes later to draw some blood. I remember thinking "what are you doing? You just told me I don't have enough of that!"

Anyway, the blood transfusion was one of the more uncomfortable experiences of my life because the blood is cold when it goes in your veins. Imagine getting brain-freeze but having that feeling fill up your entire forearm. And you can't warm it up really because it's inside your arm. It was not fun. Also, the blood in the IV tube looked like black cherry soda. I do think I've drunk that since. 

Hey, we just jumped up to 350 ml/hr. Almost done!

1:15 - bp 126/78 - the nurse said it will probably just be another 20 minutes. See my almost empty bag: 

1:33 - We're at 400 ml/hr. The last of the bag should be gone any minute now. Then I can go home and sit around err for a while. But there I won't have to unplug a machine and roll it with me when I go to the bathroom. That is a somewhat awkward thing to do. 

1:40 - boom. Done. The bag is empty and the machine is beeping at me. Time get untubed and go home. 

1:56 - final bp 116/78 - I am unhooked and done. But I'll be back again next week. I'm pretty tired, but no more so than most days. Maybe I can nap at home and then have spoons enough to pick up the house a bit. 

2:10 - Matt seems to think it's important that I tell you that he is incredibly handsome. Even though you already automatically associate him with incredible handsomeness. He's also very nice and I love him and I was glad to have him there while I had a tube in my arm. 

Tuesday, October 20, 2015

Super Magic God Powers Activate!

Forgive me, readers, for I have sinned. I has been one whole week since my last composition.

I feel like I've let myself down and the people who are following my progress, or lack there of. I've had a lot of great feedback about what I've been writing, and it's very encouraging. More importantly, writing here is therapeutic for me. I haven't written for a week because it's been a bad week; writing about it probably would have made my week better. 

The thing is, I feel like I have nothing really new to report:

Dear diary, today I was really tired.  I'm very sick.  It sucks, but what can you do?
Dear diary, today I was really tired.  I'm very sick.  It sucks, but what can you do?
Dear diary, today I was really tired.  I'm very sick.  It sucks, but what can you do?
Dear diary, today I was really tired.  I'm very sick.  It sucks, but what can you do?
Dear diary, today I was really tired.  I'm very sick.  It sucks, but what can you do?
Dear diary, today I was really tired.  I'm very sick.  It sucks, but what can you do?
Dear diary, today I was really tired.  I'm very sick.  It sucks, but what can you do?
Dear diary, today I was really tired.  I'm very sick.  It sucks, but what can you do?

What a horrible mantra. 

That's not actually what I spend my time telling myself. If I have a mantra, it's "The treatment will be effective and easy. I will be well." That's what I meditate with, more or less. I'm trying some self hypnosis stuff to speed along my recovery when I finally get my treatment. I also have a magic juju ring - it's supposed to have some Native-American healing powers; my mom found it in New Mexico. It can't hurt, right? It's a very pretty ring. 

I really wish magic was real.  The appeal is a quick and easy way to make my health better.  I know that I will get there eventually, but it's hard to be patient.  I kind of feel like all I've done for the last month, two months, is wait.  And I will have to wait some more for the treatment to work, if it does (and it will).  In a world where instant gratification is so prevalent, sitting around for weeks and months in order to get my body to function at all.  I hate being trapped in an ineffectual meat-suit, and it's nice to fantasize about a fast and dirty solution.

Going through stuff like this makes it very tempting to believe in powers greater than ourselves. Call it magic or faith or juju or karma or whatever; we need something to turn to give us a sense of control or at least reason. 

Some background information for those who may not know this about me: I grew up in a secular household.  Neither of my parents actively practiced religion, and my brother and I grew up without any particular dogma.  Our parents encouraged us to explore and research different faiths and belief systems, and I did so, but nothing ever really stood out as something I could completely get behind.  Certain philosophies and ideas made more sense to me than others (eastern ideas from Taoism and Buddhism make more sense to me than a lot of western religion), but nothing as a whole really jives.  If pressed to define what I believe, I will usually say I'm some combination of existentialist/taoist/agnostic.  There may or may not be a God, or some universal consciousness, but I don't think it cares about me or any individual or even human kind.  The universe is just too vast for that to be possible.  I don't think there's any kind of grand plan or great design, and I don't think there needs to be.  I don't need some great Meaning of Life to enjoy my time here; or maybe that is my Meaning of Life: to enjoy my time here, make the most of the present.  I've not come to this place lightly, and I'm not likely to change my mind. I'm happy to talk about faith with anyone, but I have no interest in converting, nor will I expect you to come around to my way of thinking.  

When I very sick the first time, I wanted desperately to believe in God because I wanted something to rail against, and something to turn to for answers.  Or, more specifically, for the answer of "why me?"  I also wanted to be able to ask for divine intervention - it would have been so comforting to believe that there was some higher power that could make everything better if only I asked hard enough and in the right way.  That experience definitely made me question my beliefs, or lack there of.

Ultimately, I came out of the experience more convinced that if there is a God, it is an impartial uncaring god, and I'm totally ok with that. 

That said, I totally believe in the power of prayer.  Perhaps it's more accurate to say I believe in the power of positive thinking or positive energy or something like that.  Prayer is a way for people to channel good thoughts and good energy, and I honestly think that can be very helpful.  For me, meditation is a more effective way to channel.

I feel like I've kind of lost my focus for this post, so I'm going to stop writing.  I could probably delve deeper in to these ideas, but I keep getting distracted.  Having this writing buddy around doesn't really help. 
She's very sweet, but why would anyone type when there are such sweet kitten ears to scratch?

If anyone wants to discuss the things I mentioned, feel free to contact me or leave comments.  I haven't historically responded to comments left here, but I will this time if it means having an interesting discussion. I like discussions.

Tomorrow is my first Rituxan infusion.  I'm thinking of trying to live blog it somehow.  It might be the most boring live blog in the history of live blogging, but I think I'll try it anyway.  So. See you guys tomorrow!

Wednesday, October 14, 2015

Too Tired to Title

Today I scheduled my infusions.  The first will be a week from today; there will be four all together.   This is all very good.

I am frustrated though by how stupid long this is all taking.  The FMLA time off that I have approved runs out the Monday after the first infusion.  Unless this treatment is super magic (I doubt it, most treatments aren't)  I don't see how I can possibly go back to work at that time.  That is frustrating and sad for a million reasons.

It's sad because, as I've mentioned before, I have the best job and I really want to go to work. I have great coworkers and I want to hang out with them.

It's frustrating because I've been stuck at home feeling sick and tired for ages, and have nothing to show for it.   No matter how much I sleep, I'm still so tired.  With all the rest I've been getting, none of it has been recuperative.  I need external intervention and, yes it's coming and I'm grateful for that, but it has taken so long for it to happen!  I've lost a month of my life for what feels like nothing.

Have you guys had enough of reading about me being tired yet?  I'm afraid that is kind of my entire life right now.  I've certainly had enough of being tired. I feel like the biggest slacker in the world because I literally sit on the couch all day, and when I do that, I actually feel ok.  I don't get worn out, I manage to not walk in to any walls.  I'm on just enough drugs that I actually don't feel that sick... as long as I don't try to do anything.

This is frustrating because I start to feel like I'm better and can do more.  Some days I can do more.  On Monday I has so many spoons! I did dishes and laundry and picked up the living room and even made dinner.  Yesterday, I had fewer spoons.  I was so encouraged by Monday though I tried to keep the ball rolling.  I got a very harsh reminder that my body is running at very low capacity. Want to know what I did that sucked all my energy away, not only for yesterday, but for today as well?  I did 20 minutes of yoga (super easy, yoga for beginners who are also old and have never done yoga before), went to the grocery store and watched a movie with a friend.

Today, I made Matt come home and make me lunch because I was too tired to feed myself. Thanks yoga.  I tried napping this afternoon, and sleep didn't really happen. I know I mentioned in an earlier post that the prednisone-induced insomnia was getting better... yeah, that was a lie.  Or maybe I jinxed it by writing about it.

I am determined to ruin my day tomorrow too: there's a free kung-fu movie playing tonight that I have been looking forward to going to for weeks.  I'm honestly exhausted, but I really really really really really want to go to this movie.  So tomorrow... who knows.  I'm living on borrowed spoons.

The thing with Big Bad Sick like this, I guess, is that it really is ridiculously long term.  A month lost to fatigue is probably something I should just consider par for the course.  It is frustrating though.  I have never been one to be very satisfied with stasis.  I love doing things and going places - figuratively and literally - spinning my wheels and being completely unable to make progress is the worst thing.

I have more things I wanted to mention, but sentences are getting harder to string together.  I really should concede defeat and give up on my movie tonight.  I'm sick of being careful about my energy levels though.  I know I'll pay for it, but this movie has hopping vampires.  Totally worth it.

P.S.  I'm working on a throat post to go with my nose post.  I'm trying to make a video thing.  I hope it's neat.

Monday, October 12, 2015

I Am Jack's Weird Nose

I don't know that I have ever had a good relationship with my nose.

Even as a child, I was constantly a plagued with congestion, usually blamed on allergies, and bloody noses. I have often been a mouth breather - something I actively work to avoid, but sometimes it's a choice between mouth-breathing and not breathing. 

Once in a while, I've entertained the thought that I would look pretty cool with a nose piercing, but never got one because I thought it would probably piss off the nose gods and I'd be stuck with constant sinus and piercing infections. It would not be pretty. 

The ultimate nasal betrayal came in high school with my first bout of GPA (at the time it was Wegener's... names are tricky).  In the months leading up to my diagnosis, I was having there horrendous bloody noses. I mean horror movie bad.  And I was getting them two or three times a day. Almost every night I would wake up with a bleeder sometime in the wee hours of the morning, and I would sit there and bleed for 1-2 hours.  I thought that was why I was so tired - I never slept through the night because of my stupid nose; and I figured maybe I was a little short on blood at some point.

I did go to an ENT about it.  Actually, I was visiting my normal doctor because I had a cold that wouldn't go away, and my nose started bleeding while I was there.  After 20 minutes, he took me to the ENTs.  They cauterized some stuff, my nose started bleeding as soon as we left, they cauterized some more stuff, my nose started bleeding as soon as we got to the lobby, they said there was nothing left to cauterize.  After that, my nose started hurting too; and the nose bleeds kept coming.

It probably (definitely) didn't help that I was taking a lot of ibuprofen at the time for various aches and pains, most of which involved my nose.  Ibuprofen, as you might know, is a blood thinner so it just made the nose bleeds worse.

When eventually I checked in to the hospital, I freaked a few nurses out with the crazy bleeding.

Then came the diagnosis of Wegener's Granulomatosis - confirmed by a biopsy of some nasal tissue.  After the biopsy, the nose bleeds kind of stopped - partially due to treating the disease, partially due to the packing they stuffed in there after cutting stuff up.  Since then, I've still gotten occasional nose bleeds, but nothing really more than any normal person in a dry climate - and they've been less frequent than they were for the first 17 years of my life.

Saddle nose is a thing that you get with GPA and I was left with a little ridge.  I used to joke that if I had a relapse, maybe I would at least get a new nose out of it.

My nose problems were far from over, though.  Since then, I've had trouble with congestion and frequent sinus infections.  A couple years ago, I saw an ENT about it and he said surgery was the answer to all my problems!  So he straightened up my septum and reduced my turbinates.  The latter was supposed to open up my nasal passages to I could breathe better.  All that happened after the surgery was that my congestion problems moved farther up my sinuses where it was harder to blow my nose and get rid of the gunk.

I really haven't had any nose bleeds this time around - which is part of why I was in denial so long about the possibility of a relapse.  Also, the nasal tissue we biopsied this time was negative for GPA.

Still, we can be pretty sure at this point that my nose has GPA all up in its business.

And I definitely have saddle nose now.  I'm also really sensitive about my saddle nose - so maybe I think it's worse than it is.  And I'm pretty sure I feel like it has gotten really bad recently... but I couldn't pinpoint exactly when.



But check this: Timehop showed me this picture today -->

My first thought when I saw it was "wow, check out how not jacked-up my nose is"

This picture was from 5 years ago.  Because I'm a little obsessed with my nose at the moment, I've actually looked through all my pictures from the last several years trying to pin point when it got bad.  There are almost no pictures of me in profile, so it's almost impossible to tell.  In some lights, you can see a shadow across the bridge of my nose.  It's just really hard to tell what is going on with it.





This is my nose now though.  For the straight shot, I did chose bad lighting so you can really see the shadow.  But I do have people fairly regularly ask me what's wrong with my nose.  It's honestly just a shadow - but it often looks like a bruise or like I have something on my face.  My grandmother has told me several times to cover it with make-up, but it doesn't really work that way.







And then with the profile, you can really see how the bridge of my nose has collapsed.  Compare that to five years ago, it's pretty drastic.

I've gotten really conscious about it too.  I've never really been one to worry too much about my looks - I mean, I like to look good, but I've never wanted to change my features to meet some ridiculous beauty standard.  I do want a nose job now though.  I hate my nose.

The profile is bad, but I think I'm bothered more by the shadow from the front.  I get tired of explaining it.  It's not really something that's easy to explain

Random person: Hey, there's something on your nose
Me: Oh, no, that's just how my nose is
Rando:  No, just right there, it's like ink or a bruise or something
Me: Yeah, that's just my nose.  It's actually a shadow.  I'm missing some cartilage in the bridge of my nose, so that's just how it looks
Rando: *walks away slightly confused and feeling awkward about the interaction*

Anyway, there may actually be a legit medical excuse to get it fixed - I will get my consolation nose-job.  Having it collapsed like that does actually make the airways smaller which makes it hard to breathe.  Of course, surgery is not really the greatest thing in the world, and there's always the possibility of things going horribly wrong. If it comes to purely cosmetic reasons, I'm not entirely sure I can justify the cost.  I mean, it's just my face; I can still be confident and sure of myself with a weird nose.  Maybe I can start wearing fake glasses to camouflage the shadow.

I have a post planned for my throat too, so you can get a clear picture of what's going on there.  That's another possible surgery.  But we'll go into later.

Saturday, October 10, 2015

About the Title

It has come to my attention that the title of my little sick blog (the one you are reading right now) doesn't actually make sense to everyone.  I can't sleep, again, and rather than write about me being tired and not being able to sleep, I thought I'd change things up and explain.

Basically, it's a Fight Club reference.

It might be a somewhat obscure Fight Club reference at that.  Sure, everyone knows the first two rules of fight club, but my title refers to a bit that is maybe 20 seconds in the movie.

It's a few pages in the book - but, and I just checked, in the book, it's Joe, not Jack.

Anyway, there's a bit in Fight Club after the narrator has moved in with Tyler Durden where he finds all these old Reader's Digest in the basement and there's a series of stories in said digests where organs in the human body talk about themselves in the first person: I am Jane's Uterus, I am Jack's raging bile duct.

That's where the title comes from.  Actually, it might be a bit of a misnomer anyway.  My immune system is messed up, but calling it "faulty" makes it sound like it doesn't work at all.  Really, it works too well.  That's the fun of an auto-immune disease. My immune system has gone crazy and started attacking the good guys.  My immune system is the group of crazy mercenaries you encounter during the zombie apocalypse that let you know that the real monsters are not the zombies, they are other people.  Faulty just seemed like the most concise way to say "not working quite the way it's supposed to."

Anyway, there was a period of time when my friend Arrakis and I would watch Fight Club whenever we ran out of things to do.  We probably watched it once every week.  It's a great movie, what can I say?  We even watched it in French once just so we could learn how to say "I am Jack's raging bile duct" in French (Je suis la bile rage du Jaques).  So there is probably no reference to that movie that I would not get.

Still, the book came out in 1996 and the movie in 1999 - so maybe I'm super showing my age with the reference.  But, dudes, it's a great movie.  In fact, I might watch it tomorrow.  Hell, maybe I'll do a whole Brad Pitt is kind of crazy movie marathon, because those movies are great (Fight Club, 12 Monkeys, maybe Snatch). 

Incidentally, the first time I watched Fight Club was when I was sick in the hospital the first time around.  There, now I've made it relevant to the topic of this blog.