Every Now And Then I Fall Apart

This isn’t the post I had intended to write.  How many times have I said that before?

Originally, I was going to write about the side effects of Humira.  But they don’t seem so bad anymore.  But I’ll tell you about that, anyway, and then I’ll tell you about the really bad part.

I really wanted to title this post “the attack of the black snot,” but I figured no one would read it with a title like that.

So two days after starting Humira, the injection wasn’t so bad, and I felt like I had more energy. 

My nasal passages were feeling a bit constricted, but seemed like a small price to pay.

Then I blew my nose…

As I looked at the tissue, I realized it was dirty and wondered what could have possibly gotten on a tissue that I had just pulled out of the box. 

Then I blew my nose some more…

And I realized that the Kleenex was not dirty.  It’s what was coming out of my nose!  And this was not dried blood.  This was black mucus.

It was like a magician’s trick, when he hands you a clean towel and suddenly your dirty fingerprints appear all over it.

After the back and forth with getting on Humira, I decided to avoid having to bother my rheum.  So I called the 24-7 Humira nurse line.

The woman I spoke to was very nice.  But when I explained to her what I was experiencing, she gave me the answer that no patient, in uncharted territory, ever wants to hear. 

She told me that she had never heard of this before.  And that since it was something I had not experienced before – oh yeah, black snot, happens all the time – she suggested I contact my rheum.   

My first concern is that my brain is eroding inside my head.  My second concern is that I may not be able to stay on Humira, and I really don’t want to experience again having to go off of a drug that makes me feel better, because it is doing bad things on the side.

But this has not been the worst of it.

Wednesday was my second dose of Humira.  I used my right leg, which I never have injected into before.  But I figured it wouldn’t be much different than the first injection.  I clicked the button and immediately my whole leg was burning.  And before I knew what was even happening, Humira was running down my leg.  I figure I got at least half the dose in me.

But I don’t fully understand what happened.  All I can say is that I panicked and freaked out.  I wasn’t expecting it to feel the way it did, and I guess I was unconsciously trying to rid myself of the pain.

Then I cried, for close to an hour.  I was so frustrated and upset with myself. 

Lately, where my rheum’s office is concerned, I am dealing with idiots.  The last two months have meant more legwork on my part, having to follow up after mistakes and errors.  And now I feel like I am an idiot, too.

How could I have done something so stupid?

My boyfriend came over about an hour after the injection mistake, and found me curled up in bed, crying.  He consoled me, and then took me out for the night.   

(And props to the boyfriend for being so amazing.  He’s present for me in a way that no other guy has been before.   And this was the first time he saw me cry.  I’m not a pretty crier.  But he was awesome.)

I don’t know why I got so emotional about it.  I really don’t.  I messed up.  And it happens.  We all make mistakes.  But when messing up involves my health, it’s not easy to brush off.  I feel like I’ve failed myself, my doctor, my boyfriend, and my parents.

In the grand scheme, one botched Humira injection is minor.  But right now, it feels major. 

I guess it all got me into the thought process of if I wasn’t sick, I wouldn’t be giving myself a shot.  And if I didn’t have to be doing this, there wouldn’t be anything to mess up in the first place.

And the thing that gets me is that if someone, like a nurse, was giving me the injection, it would have been okay.  It’s not that I couldn’t handle the pain, it’s just that my reflexes took over and did the natural thing – removed the thing that was causing pain.

Maybe I didn’t pinch the skin tight enough.  Maybe I hit a vein.  Maybe.  Maybe.  Maybe.  I can’t explain why this injection felt so drastically different than the first one.  Maybe the first time I was prepared for the pain that didn’t even end up happening.  And this time I wasn’t expecting there to be pain.

I’ve decided if the next dose goes fine in my other leg, than I’m just going to keep using my left leg and not use my right.  

I got the Humira starter kit.  But there was nothing in there I could find on what to do if you screw up a dose.  I can’t imagine I’m the only one who this has happened to.  I suppose I could have called the nurse line again, to see what they recommend, in my case.  But since we can’t know for sure how much really got in and how much didn’t, I don’t think it really matters.

 

Do our doctors realize how stressful all of this is?  Do they realize how much the physical is tied into the emotional, and vice versa?  I don’t want to live my life in two week increments, biding my time between Humira injections.  I don’t to live in fear that I don’t feel like I can adequately deal with the situation.  I want to be the master of my own health situation.  I don’t want to feel that I am reliant on others who don’t have as much of a stake in this as I do, like many of the staff members at my rheum’s office.

(In the most recent case, my prescription was called in to the wrong pharmacy.  I was finally able to talk to someone who knew what they were doing, and it got called in to the correct place.  But it is a compounded medication that they have to make up and then mail me.  It’s Friday and I only have enough of the medication through Tuesday.  Thankfully my pharmacy is at least on the ball now that they have the prescription.)      

But I have to move on from this.  I have to be able to gear myself up for my next dose in two weeks.  I need to not psych myself out by thinking that this one mistake defines the rest of my relationship with this medication.  And ultimately, I need to settle the score.  Because right now, Humira has one up on me.  And that’s unacceptable.