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.