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.

Friday, October 9, 2015

Blazing Medical Trails: Brief and sometimes Personal History of Granulomatosis with Polyangitis

I want to start this post with a little disclaimer.  The following information is 100% my own understanding of the history of treatment etc. for GPA.  I am not a medical expert.  I've done a little research on the subject in order to post this (links to sources at the end).

Until fairly recently (almost within my lifetime) a diagnosis of Wegener's Granulomatosis was basically a death sentence.  It was only in the 1970s & 1980s that doctors figured out that hitting it with a combination of a chemotherapy agent and corticosteroids could send it in to remission.

That's the treatment I got when I was first diagnosed.  I was on huge amounts of Prednisone, and I had several infusions of Cytoxan, which is a pretty terrible chemo drug.  As far as chemo therapy goes, I didn't have it too bad.  I did lose some of my hair (but I started with a lot so it wasn't that noticeable), but I didn't really get most of the terrible chemo side effects you usually expect.  I also did not get bladder cancer from my treatment, which was a real concern, so that was good.

I did go through a few weeks with, almost literally, no immune system.  That's kind of how the chemo agents work - you kill off the entire immune system (which is causing the problem) and hope it grows back healthy.

After I finished that poison, I took Methotrexate for about another year before I was pronounced to be completey in remission.  Methotrexate in this case was used as a kind of maintenance drug - it inhibits the growth of certain kinds of cells.

The treatment I'm going to get this time around is completely different.  Last week, when I saw my doctor, he told me that these days chemo is kind of a last ditch effort.  So no cytoxan for me! Yay!

What am I doing instead?  Well, there are two options:

Option A - Rituxan infusions.
Rituxan was approved to use in treating GPA in 2011 and so far seems to be pretty damn effective.  Where cytoxan is a chemical, rituxan is a protein.  It's an antibody molecule that latches on to B-cell and essentially just pops them.  So rather than murder my entire immune system, it just get rid of a bunch of problematic cells and then I'm good to go.  Long term? Who knows.  It's only been used to treat this for a couple years.  But so far so good, and  I think it sounds promising.

This is a very aggressive treatment though.  This little relapse of mine is very very limited.  GPA has the potential to mess with a lot of very important body parts.  It's only picking on my nose and my throat; it's not even in my lungs like it was last time.  More than that, it's probably actually been active for a long time (possibly a couple years) and hasn't really gone anywhere.  Is a huge, aggressive, systemic treatment overkill?  Maybe.

Option B - Oral Meds
This would be some pill cocktail of mycophenolate, azathioprine, and methotrexate.  It would be a bunch of pills for a while.  It's kind of a gentler approach.  Probably just as effective, but it might take longer.  Honestly, this option doesn't appeal to me that much so I don't have much to say about it.

I talked to my doctor today, and we're going to option A.  He would have been really comfortable going either way - in his terms, he's 52% for rituxan, 48% for pills.  I'm more inclined to rituxan, so that's what it's going to be.

So, after some insurance mumbo jumbo* gets straightened out, and we are sure I don't have TB (test takes 48-72 hrs), I will finally get down to the business of fixing my immune system.

It's kind of neat, I guess, to think that I am kind of blazing the trail when it comes to treatment, management, and general understanding of this disease.  I am a tiny part of new medical frontiers.  On the other hand, it would maybe be nice if all the doctors were old hat at taking care of this condition.

Here are some websites with pretty good information if you feel like doing your own reading: National Institute for Allergy and Infectious Disease
Vasculitis Foundation
American College of Rheumatology

*Insurance mumbo jumbo:  Rituxan infusions are super expensive and I can't start them until we're sure my insurance will pay.  Each treatment costs approximately $20,000.  I'm getting four of them. My insurance will cover most of that, but I'll still probably get stuck with a ginormous co-pay.  To that end, the drug company is actually giving me a co-pay card that will cover some, if not all, of that cost.  So basically, the drug company is able to keep their prices ridiculously high because they give money to the patients that need it and over charge insurance.  It makes no sense to me at all.  Out system is screwed up.

Monday, October 5, 2015

Little and Big Blessings

Today has been a really good day.

As many of you probably know, I set up my GoFundMe campaign yesterday.  I am so amazed by the responses and contributions I've gotten so far.  Who knew that I knew such wonderful, amazing, generous people?

I'm serious.  I am amazed and overwhelmed by what people are willing to give to help me.  I'm so touched, and I can't even begin to articulate it.  I am so humbled and so thankful; if I get a chance to pay it forward, I will.  I just wish I knew how to really show my appreciation.

So I'm feeling super loved and supported, but today also an amazing thing happened.  I was actually able to take a nap this afternoon!

I've mentioned before that prednisone is the worst thing and one of the side effects is insomnia.  So for the last two weeks I've been super tired, but every time I've tried to sleep, I've completely unable to.  I've also had trouble sleeping at night.  I've woken up early every morning and not been able to fall back asleep.  But, on Saturday I reduced the amount of prednisone I'm taking every day, and now the insomnia is not nearly as bad.

It's gone completely, but I was actually able to sleep when I was tired today.  It's kind of amazing to be able to do that.

A friend who I haven't seen in a very long time came over to visit too.  It was really nice to see him.

I didn't hear from my doctor yet, so no news on the front.  Should hear tomorrow and then I'll really know exactly what I'm doing to get myself feeling better.

Saturday, October 3, 2015

Second State of the Cassie Address

I saw my doctor yesterday. It was a good appointment. We haven't started any treatment yet, but I already feel so much bette because now I have a plan. No more  waiting around in purgatory.

This appointment was pretty much a matter of deciding how aggressively sick I am (actually, relatively not that bad - none of my really important organs are sick) and how aggressively we should treat it. I have basically two options, which I will probably talk about in a separate post about the treatment history of GPA. Based on test results that should be in Monday or Tuesday, I'll make a decision with my doctor and then we can get started. 

I also got the FMLA paperwork done. After really assessing how I'm feeling, my doctor basically told me to take the rest of the month off. I was surprised by how immediately after that decision I felt so much relief. I knew I was putting a lot of pressure on myself to go to work and try to do my job, but I didn't realize quite how much. Having authoritative permission to let that go took such a huge weight off my shoulders. And having the paperwork done so I can take the time off and still have a job to go back to also really helps. 

So, I still don't feel well. I am very very sick. But I do feel about 300 times less axious and stressed than I did earlier this week. 

There are, of course, still things to worry about. My biggest concern right now, besides, you know, getting my health back, is taking a month off work without pay. We do have some emergency savings, but I'm going to ask you all for help. In the next few days I'm going to set up a gofundme campaign. 

My second biggest concern, besides, you know, getting my health back, is that my doctor is moving his office and will no longer be covered by my insurance. So I will be spending some of my next week home from work talking to my insurance company.

All in all, things are looking up. It will still be a long road, but we'll get there.