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.


  1. so sorry that you're goring through all this (and I can relate to so very much of it!)
    An ER is about the very last place you ever want to be (and not for the reasons most people would think)--they are so very rarely helpful
    I'm also with you on the no sleep train

  2. I hope you can find help now that you got that important appointment. Thank you for writing out your thoughts. I felt like was reading through my life(Fibro has many of the same symptoms) and it appears as if we are both in total love with our jobs.blet me know if there is anything I can do to help.