Wednesday, September 30, 2015

Update and Insomnia

When someone (a medical professional) asks if you have been stressed, is it completely inappropriate to laugh in their face?

A lot happened on Monday, with a result of pretty much absolutely nothing happening.

I can't sleep.  I'm writing in hopes of working through some of the things that are keeping me from sleeping.  I will start this post with telling you about my Monday and then I will probably ramble on.  Read as much or as little as you like.


When I woke up, I actually felt pretty good.  The weekend had been a little busy, but I hadn't felt like I over did anything, and when I got out of bed Monday morning, I felt like I had enough energy that I would be able to make it though a full day at work.  Boy was I wrong.

By the time I was ready for work and on my way, I had definitely noticed that I was having some difficulty breathing.   This is a complicated problem, because I have been having difficulty breathing for a very long time - it's probably my biggest symptom.  Having my sinuses full of junk makes it difficult to breathe through my nose, having subglottic stenosis makes it hard to get air through my throat.  Monday felt more like asthma, or... the best way I can describe it is that my lungs feel tired (it hasn't gone away, I'm using present tense).  This is a new difficulty breathing.

I was supposed to do Storytime that morning.  It didn't happen because I couldn't breathe.  I did manage to get some work done though - the kind that involves sitting at a desk.  Around 10:30, maybe 11:00  I started experiencing a very strange sensation of numbness and tingling in my face and fingertips.  This is one of like 300,000 side effects that come with Prednisone.  I decided to lie down for a minute - it helped a little, maybe.

By 1:00, the numbness was pretty bad, and my hands were shaking so badly I could barely type.  I went home and called my doctor; talked to the nurse who told me to go to the ER just to make sure it wasn't anything really serious.

At this point, I was terrified.  After spending 2 hours in the waiting room at the ER my terror had moved on and was replaced by annoyance and anger.

When I finally saw the ER doc, he asked if I had been experiencing any abnormal stress lately.  He offered me a drug to help my symptoms before he even really asked me much about what I was feeling.  I declined because I don't really think adding a new drug to the cocktail with it's own list of side effects was what I needed.  Then, he had me breathe in to a paper bag.

A fucking paper bag.

Like they do in cartoons.  His best guess was that the SEVERAL HOURS of numbness was caused by hyperventilation.  I don't know how he came up with that. I mean, yes, I have difficulty breathing, but that's been going on for a long time. I KNOW HOW TO BREATHE.  I compensate for the narrow opening in my throat by taking very deliberate, slow, deep breaths when I have to.  My lung capacity has been very tested lately because, again, primary symptom, and I really do know how to breathe.  In fact, I'm pretty good at it.

I didn't say anything along those lines because I was tired of being there, was pretty sure if there was any real indication that some thing serious, like say a stroke, was a concern I would have been bumped slightly higher in the ER priority list, and was prescribed a fucking paper bag.

So that was my ER experience.  I feel like I wasted a lot of time (about 3 hours all told) and money ($150 copay, which isn't that much, but that's a very expensive paper bag) and energy (which I have little of).  I will concede that it could have been more serious and it's better safe than sorry and I wouldn't have known if I didn't go. Still. My primary take away is that it was a waste of time and effort.

The frustration of it all, of course, is compounded by the fact that I have still not actually seen the doctor that I need to be working with to manage my condition, including the terrible treatment and the terrible side effects that go with it.

Monday was a very bad day.  After the ER, I managed to distract myself until I went to bed.  Then had a little bit of a mental malfunction that devolved in to a fight with my fiancĂ© at 1:00 in the morning and resulted in neither of us getting much sleep.

Today... yesterday? I don't know how time works.  This post will go up Wednesday, but I'm still awake, so I will call Tuesday Today, even though technically Today is Wednesday. and you guys can decide if the chronology is actually important.

Today I had no capability of dealing with anything at all.  I had no physical nor emotional energy to spend on anything.  I slept.  I played video games.  I watched terrible reality TV.  That was the extent of what I can handle.

Now I can't sleep.  The thing about video games and reality TV is that they are a very good distraction.  They take up just enough mental space that I can ignore all my problems and just exist for a little while.  Unfortunately, when I tried to go to bed, all those problems popped up and I started thinking about them again.

I am hoping that by writing about them now I can trap them in words for a while and get some sleep.

I think the question at the root of it all is "Have I been unusually stressed?"

Of course I have.

I have tools at my disposal to help deal with that stress, and there are people around me who are extremely supportive and are doing everything they can to help me reduce my stress.  But the list of things that are stressing me out is very long and there's only so much that can be done about it.

I would say my biggest stressor at the moment is the brick wall I'm running in to over and over again when it comes to getting in to see a rheumatologist.  The good news is, there might actually be movement on that front, but I won't know until tomorrow, so I'm not going to talk about it now.

Runner up: work, but not in the way you would think.  My boss has been amazing and accommodating and my coworkers have stepped in to help me.  I have not once felt pressure from them to do anything I couldn't handle.  That doesn't stop me from pressuring myself though.  You see, I big part of my identity is being capable and reliable and dedicated at work.  Having a strong work ethic is a huge part of who I am, so I am definitely pushing myself harder than I probably should - it is coming 100% from me though.

Also, this is basically my dream job, and I just started.  I want to be so good at this job and I could be so good at this job if I could just do my job.  I love where I work and I love doing the work and it kills me that I just can't, because there's part of me that knows I should be able to and doesn't understand why it isn't happening.

Besides not being able to work.  I also am extremely stressed by my complete lack of sick leave.  I have FMLA paperwork ready to be filled out, but have I mentioned yet how I can't make any headway with doctors?  I've talked to HR and I've tried to get the paperwork done by the Throat Doctor's people.  Nothing has come of it yet.  

When I do get the FMLA paperwork done, I won't have to worry about losing my job (the dream job that I worked very hard to get and that comes with benefits, like health insurance, which will pay the doctors if I even get in to see them).  I will probably be facing at least some time off work without pay.  We have some emergency money saved, but who knows how long that will last.  Financial stress is a very major and harsh reality.  Maybe I will set up a gofundme campaign or something.

Ok. I think that's all I have for now.  I may now be tired enough that my brain wont be able to keep me awake.  Also, I think writing about it really did help.

Hopefully I will have another update tomorrow... erm... later today... with some good news on the doctor front.

Friday, September 25, 2015

Many Many Thanks

I just want to take a minute to mention how grateful I am for everyone who has contacted me with words and thoughts of support.  It means a lot to me to know that if I need help, I have so many people I can turn to.

I've still been crying a lot lately, but it's less and less because of being sick or frustrated or full of self-pity.  I've been mostly crying because I am so touched and grateful that so many people have my back.

There were two things I really struggled with last time I was sick.

One was asking for help/letting people know that I was sick.  I would push myself harder than I should have because I didn't want my friends to be burdened with how messed up I was.  To be fair, most of the people I knew then were dumb kids.  I mean, they were pretty smart, but they were also teenagers with no experience of the kind of life-changing tragedy and sickness I was face with.  Also, I really wanted to be normal.

Two was a feeling of being isolated and very alone in what I was going through.  I eventually found someone online with the same sick, around my same age, who got what I was going through.  I still can talk to him if I need to, but now I have a peer group that has dealt with chronic illness and such life hardships.

Anyway, I just want to say thank you to everyone who has reached out, to everyone who is sending me good thoughts, positive vibes, prayers, whatever you're doing.  I also know at this point how hard it is to sit idly by and watch a good friend suffer, so I am definitely more comfortable at this point asking for help.

Thank you all.  You make my life much better.

Extra extra thanks to my mom who came over this week and cleaned my condo. It honestly was such an amazing thing to do!

Wednesday, September 23, 2015

Fifty Shades of Tired

Being sick like this gives a person a whole new appreciation for the many nuances of being tired.

The night before last, I didn't sleep well. Prednisone gave me night sweats, which are super gross and uncomfortable.  I was simultaneously freezing and boiling hot.  By 5:00 in the morning, I was wide awake with no hope of getting back to sleep.

Yesterday, I was sleepy, but not really very tired.  I got out of the house, did some things, even managed to pick up the condo a little.  I went to bed early, because I didn't get a lot of sleep, but it was a pretty good day.

Last night, I slept very well for a very long time.  Today though I am Tired.  I could barely drag myself out of bed.  I thought maybe with a good breakfast and coffee I could maybe rally and go to work and get some stuff done.  Breakfast and coffee didn't do the trick.

After I took a shower, my arms and legs were literally shaking from exhaustion.

My big accomplishment for the day is going to be completing very basic personal hygiene.

Also, do you know how disheartening it is to call in to work for being tired. A normal person can go to work even when they are tired.  It doesn't feel like a reasonable excuse.

Other shades of tired: brain fog that makes me feel like my head is floating three feet behind and above me.  Walking into walls because spacial perception takes too much effort. Being wide awake and staring in to space for several minutes without even noticing.  Being very sleepy because I slept poorly or for a very short time.

Shades of tired I don't get to feel right now but would like to:  That accomplished tired you get after working out or getting a lot of work done.  Sleepy because you chose to do something fun instead of sleeping last night (like hanging out with friends or reading).  The energizing tired you get from working hard and fast and keeping moving.

In other news, I spent a lot of time yesterday calling doctors and insurance numbers.  I was trying to get in to see a rheumatologist sooner than October 13.  Absolutely nothing came of it.  I guess my appointment isn't really that far off at this point.  It seems very unlikely that anyone will be able to fit me in sooner.  It's frustrating, but what can you do?  I feel little bit like I'm drifting, floating around in limbo.  The effect is definitely amplified by the tired.  It gives everything a surreal, dreamlike film.

Monday, September 21, 2015

Navigating Energy Levels

I forgot how difficult this is to do.

When I was seventeen, I was a very busy seventeen-year-old. I had a lot on my plate and I loved being busy. When I got sick, it was very difficult first to accept that I simply did not have the energy to stay busy and second to learn when to recognize when my energy was waning to dangerously low levels. 

It took a lot of experimentation and a lot of tears for it to sink it - I really could not take on everything like I used to. I had to constantly weigh my energy level, determine how much I had left, and decide whether or not doing something was really worth it if it meant paying a heavy price later (usually in the form of lots of sleep). 

I'm currently facing that stage of my illness again. I have the maturity and the experience to recognize when I'm pushing it, but it's still not easy.

I started a new job about a month ago.  It's a really great job - kind of the dream job - this is the job I got my master's degree for.  I'm a children's librarian at a great library.  Children's librarianing is so much fun, but it takes a lot of energy.  Today, I did storytime.  The program was about 30 minutes long, including the time when the kids were let loose at the craft I planned.  But when it was finished, I was exhausted.  I stayed at work for a few hours after, but left because I was so tired I was starting to bump in to things.

My new boss is wonderful and supportive.  She keeps telling me to not worry about it when I can't do things, but I'm still so frustrated.  I love this job, and I just want to be able to do it.  I can't help but feel like I'm failing to live up to my promises and my potential - I applied for, interviewed for, and accepted the job with the intention of doing it to the best of my ability.  I am doing that, but I expected it to be the best of my healthy ability.  I just... I hate being limited.

Yesterday, I went to the state fair with some friends.  One of them was in town for the weekend; I hadn't seen her for ages, so this outing was definitely a priority for me.  I was there for about 2 hours (the first 45 min of which were actually spend just standing/sitting around waiting for everyone to show up).  I pushed myself as long as I could and then had to bail.  I kind of felt like we had just gotten there, but I was completely out of energy.  I spent the rest of the day drifting in and out of sleep, went to bed early, slept all night.

My condo is a mess, and I hate it.  I haven't had the energy to even think about cleaning it for weeks.  Fiance is busy and stressed - he just went back to school, and he's doing important work supporting me while I feel like shit.  Cleaning the place would be nice, but it's not in the list of top 3 things that need to get done, so it's not happening.

I have tomorrow off work.  I have plans to get lunch with a friend, and visit my old coworkers.  I'm really hoping to have enough energy to go grocery shopping after that, but I'm not necessarily counting on it.

It's kind of impossible to explain how frustrating this is.  If you've never been chronically ill, you have no idea how it feels to wish you had enough energy to just get through a normal day like a normal person.

"Spoonie" is a term I recently discovered on tumblr. It's a term that originated with this post by Christine Miserandino. It's very much worth reading, and I may refer to it the future.  Her story/theory is very relatable.  The last two days, I've hit the point where I say to myself, "yep, I am out of spoons for the day."  It's a convenient way of thinking about things.

Saturday, September 19, 2015

Once More unto the Breach

It was Throat Doctor who ordered the determinative blood test, so it was he who called me to talk about the results. He thought it important that I start treatment. He's not wrong. 

Because he won't be the primary doctor dealing with this, and because he, apparently, can't prescribe things like Cytoxan and Rituximab, I still need to see my rheumatologist very soon. 

But Throat Doctor can prescribe prednisone. So I'm back on prednisone.

Prednasone is the Joker to my Batman, the Lex Luthor to my Superman, the Magneto to my Professor, the Master to my Doctor. 

Ok, that's not really accurate because prednisone is not actively trying to destroy me. It's not actively trying to do anything as it is an inanimate cortico-steroid. And I have to take it to prevent my destruction. Fine. prednisone is not a super villain at all. 

But the side effects. Dude. They are not fun. 

Right now it's making it very difficult to sleep. It's also making me very hungry, which is very bad because it also kills metabolism and muscle mass. I am going to have to actively fight against the side effects because last time, I gained 50lbs on prednisone, and I can't afford that kind of weight gain - I'm already about 30lbs heavier than I am comfortable with. It also leaches calcium from bones and can cause diabetes. Not to mention brain fog and mood swings. 

My plan is to follow a very strict diet and hopefully start excercisinf more. I'm hoping the prednisone will reduce the junk in my nose and throat (possibly my lungs, it's unclear if I have new junk in my lungs or just old scars) enough that I can actually breathe well enough to exercise. Of course these are all grand plans, much easier said than done.  Especially since what I really want to do is stress eat all the junk food. 

Friday, September 18, 2015

Here's the thing...

Last night I "came out" as sick on Facebook which was a fast and dirty way to tell most of my friends all at once.  I received a huge outpouring of love and support from them, and I really am thankful for all of it. I am so lucky to know such wonderful people. 

Here's the thing though: the all acted like its a Really Big Deal. And it is. But, also, it isn't. 

This is very hard to articulate. 

Obviously, having a GPA relapse is a huge deal. It's very serious, and getting back to remission is going tone a long, uphill battle.

But... This whole ordeal is not going to be nearly as bad as last time. When I was Sick before, it ruined just about everything about my life. I was 17, after all, and ill equipped to deal with something like a life-threatening chronic illness. None of my friends had any kind of relative perspective.  It threw off my plan (in place since I was 7) to go away to college immediately after high school. It derailed my entire career plan - I was fairly serious about wanting to be an astronaut. My entire outlook on life changed, many times. And it took a long time to figure out who my new self was, how much my illness defined me, and what my new limits were. I also had to deal with the PTSD thing. 

This time is not going to be like that. Not much in my life is going to change. I will have to spend more time in hospitals, but I've already established the Cassie who is  the Cassie with GPA. I've been her for over 10 years. 

I'm also not nearly as sick as I was. Last time I had to stay in the hospital for ten days. This time I'll be able to do everything outpatient style. I may even manage to not miss too much work. Hopefully. We'll see.

All of this is something I that I kind of have to remind myself of multiple times a day. It's not really that bad. Rather, it's not even close to as bad as it was last time. 

I have faith that I am going to be okay. I'll have to work for it, but that's life. 

Thursday, September 17, 2015

The Results are In

So... I am officially very sick.

Blood test results are in.  There's one that counts the number of Preteinase 3 antibodies.  Pr3 is a specific antibody of the Anti-Neutrophyl Cytoplasmic Antibody variety (ANCA), which shows up in GPA.

The normal range is 0-19.  Guess what my count is!


Yeah.  I'm very sick.

Tuesday, September 15, 2015

First State of the Cassie Address

I have this thing where I can't breathe sometimes.

Three years ago, I had nose surgery - septoplasty and turbinate reduction - because my nose was constantly stuffed up. The idea was that by straightening my septum and shaving down my turbinates, there would be more room for air to get in and out my nose.  It didn't really work.

Shortly after that, I started grad-school on top of my full time job.  I was very stressed and didn't have time to go out dancing, which was my primary form of exercise up to that point.  That combined with the apartment I was living in made my allergies go crazy, and I started having some pretty bad asthma symptoms.  So I went to an asthma and allergy specialist.  He did a scratch test and told me I wasn't actually allergic to anything.  He also officially diagnosed me with asthma.

The treatment this doctor gave me was really expensive, and it didn't really work.  I am also kind of a fan of not taking medicine unless it's absolutely necessary.  I didn't go back to that doctor because I was very busy and, since I knew it was asthma, I figured I could do things on my own to make it better - diet, breathing exercises, that sort of thing.

School went on.  Stress levels rose.  My breathing issues got worse and worse.  I moved out of the apartment with gross old carpets and a swamp cooler and probably mold because I was pretty sure it was killing me.  My breathing problems didn't get better in the new condo though.  But school, work, stress....  I just needed to graduate and then I could focus on my health, because I only had so much headspace.

I finished grad school in May (woot!).  A few weeks after, I made an appointment with a new Asthma Doctor.  He made me breathe in a tube and stuff and then he was like, "it's not asthma."  He had me do several tests, including the normal blood work-up for Wegener's (which is actually now called Granulomatosis with Polyangitis, GPA for short) and chest and sinus CT scans.  The bloodwork was mostly normal; the ANCA test was a little high.  My chest CT scan showed some scar tissue, but I've had that for 10+ years, and signs of bronchitis.  Asthma Doctor referred me to an ENT to take a look at my throat (which is where the asthma-like symptoms were actually coming from) and my nose and do a biopsy to officially confirm/rule out GPA.

So ENT looks at my nose and he sees a bunch of scar tissue, plus the bridge of my nose is collapsed a little.  He thinks it looks very inflamed, but not exactly like GPA.  He snips out some tissue (not the most fun experience) to biopsy - it comes back negative.  This is good news.  The biopsy is how GPA is usually diagnosed.  He also sticks a camera down my throat and discovers that I have a subglottic stenosis (google it).  He decides that he is out of his league and refers me to another ENT (Nose Doctor) who is actually not covered by my insurance so we have to go through the whole rigamarole of getting pre-approval to see him.

I see Nose Doctor.  He looks around and tells me that he's not willing to put much effort into fixing my nose until I see my rheumatologist, because if it's GPA, fixing it will be a bit Sisyphean.  He also refers me to his colleague, Throat Doctor, who is also not on my insurance but has a clinic once a month at another hospital that is.  So I make an appointment with Throat Doctor, and my rheumatologist.  Unfortunately, I can't get in to see my rheumatologist until mid October (remember, this was July when I was making these appointments), and the Throat Doctor until September.

So I got referrals for a few other rheumatologists, but the earliest any of them would see me was March. Of course, the rheumatologist that Nose Doctor really wants me to see doesn't take my insurance. 

For the month of August, I'm thinking that things are probably mostly ok.  I mean, I can't breathe, but we've identified why, and it's fixable.  And if none of the rheumatologists in the city thought it was important to see me any time soon (they were all sent my chart, blood test results, and the ENT's notes), I probably don't have to really worry about it being a relapse, right?

Early this month, I finally had my appointment with Throat Doctor.   He scopes my thoat, and basically says "Yep, that's subglottic stenosis right there, and there's pretty much no way that it's there for any reason other than Wegener's."  He won't do anything about my throat until I am treated for GPA because he thinks that the whole thing will clear up with that.

Then, he proceeds to tell me about all these cases he knows of where people have Wegener's and how he had a colleague who actually died recently because of it.  He didn't die from the disease itself, but from the treatment - his Wegener's was in remission, but the chemo gave him bladder cancer.  

Can you believe he did that?  At that point, I'm in his office crying (because PTSD) and he's telling me these horror stories.  His resident looked so uncomfortable.  I left the office, got in my car and started bawling.  I was so upset I missed the rest of my day at work and was literally a blubbery mess until I went to bed (and cried myself to sleep).

So now I wait until October - still can't get in earlier, but I'm on the list if there's a cancellation.  

Until this weekend, I haven't really felt that sick.  But this Sunday, I had no energy.  I slept until noon, crashed on the couch (dozed while watching TV), and went to bed at 8. Yesterday was just as bad.  Today I feel a little better, but that kind of energy crash makes me worry about my kidneys.

Saturday, September 12, 2015

The Beginning, again

The worst thing that ever happened to me in my life is happening again.

I've written about it before a long time ago in a galaxy blog far far away. You can read it by clicking on this sentence. Bear in mind that it was written several years ago, and my thoughts may have changed. But if you go to the earliest posts, you'll get a good overview of the story.  I don't have the heart to go into details now, but here's the cliff's notes version:

When I was 17 I spent 10 days in the hospital.  I was diagnosed (after three horrible days that belong on an episode of House) with Wegener's Granuomatosis (WG).  I went through two years of treatment before remission.  It derailed my entire life.  I have post-traumatic stress about it (officially diagnosed btw).

Anyway, after 10+ years of remission, I'm 95% sure I'm having a relapse now.  I have yet to see my rheumatologist, so it hasn't been officially confirmed yet; I have an appointment in mid October.  I've had two non-rheumatologist doctors tell me it's a relapse though.  So, I've given up hope that what's wrong with me can be anything else.

So.  I'm very sick.  Again.  And I'm freaking out, because post-traumatic stress stuff mostly, I think.

The point I wanted to get to today though is that one of the things I regret most about when I was sick before is that I completely stopped writing in my journal.  All through high school I religiously kept a journal.  But I stopped writing in it about a month before my diagnosis (my last entry: "I'm so fucking sick of feeling so sick and tired") and didn't start up again until about 3 months after (dear diary, guess what?).

I have decided that this time I am going to write about it.  There are several reasons I want to do this:

  • I think it might be a story worth telling.  There may be people out there who can relate, and need something like this to relate to.
  • Forcing my shit into coherent thoughts and sentences that can be written down really helps me work through things.
  • It's hard to talk about in real life, and especially in public (I'm likely to cry uncontrollably).  If I can point people to this and say "hey, this is what's going on with me right now" that takes a huge burden off me.  That said, I will make an effort to talk about it to friends and family because that's kind of important too.
  • I know there are people who care about me who I am not going to be able to keep updated on everything that's happening.  This is a place they can look.
I think a State of the Cassie Address is probably in order, but I think that should go in a separate post.