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!

.

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.

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 fiancé 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.

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. 

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. 

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.

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.