Friday, May 4, 2012

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. 


  1. I know how scary and frustrating it can be to start a new medication for a systemic autoimmune disease, a medication that could have severe side effects, and to feel like you are having to do the job of the doctor, nurse and pharmacist all by yourself! I also know that medical professionals do not always know about side effects, as I had an experience with a rare side effect from a medication that 2 doctors failed to recognize and I had to diagnose myself by looking at prescriber info on the internet. If I hadn't figured this out and gotten off the medication I could have developed a life threatening clotting disorder. I also understand how it can feel when you've put so much time energy and effort in to taking a medication and then have things not go as planned you can feel like all your efforts were wasted, but sometimes it takes time to learn how to do things that don't feel natural (like injecting yourself with medication)! It's great that you have a supportive boyfriend who can help you take your mind off of dealing with all this not so fun medical stuff. I hope things begin to get more manageable for you soon, but I love your attitude that you will not let this medication win!

    I also put a little snippet below from a website I looked up that might have some info relating to the black mucus re possible fungal cause. Probably not relevant but thought I'd include it just in case.



    Specific types of chronic sinusitis and pneumonia can cause black mucus. Two examples are mucormycosis and aspergillosis. These serious fungal infections are uncommon and are typically seen only in people with a compromised immune system.

    Read more:

  2. I am on Humira and both of those things happened to me so neither is odd. As a matter a fact, this weekend, I had to take an injection and because both my legs felt sore, I decided to inject myself in the stomach. I had the best intention but it did not work out as a planned – the stinging, the dripping/running, the pain and the tears. I was not in a happy mood to start so the tears started. It is, as you said, stressful – the whole idea of trying to make ourselves better and living with these diseases – the meds, the doctors, the outside world, etc. Injecting ourselves as a reminder we are sick and sometimes, the stinging pain is just enough to set off the emotions. It has happened to me more than once. I have iced the area, I have cleaned it with alcohol, I had had a nearby distraction and I have had someone else do it but when the emotions kick in, I turn into an emotional mess pretty fast. I know most of it is that we don’t have control of the being sick so the things that we want to have control of are pretty overwhelming and the other part is that we are human. Hang in there, you are not alone.

  3. I have had this happen with another medication that uses a pen type application. I know for myself, I anticipate the click of the pen and the needle going in and sometimes my hand pulls back. Then the medication drips out and the spot feels sore and burny. It even bleeds. Not sure if this happening with you. I find that if I relax my leg muscle and take breath or two it helps. It works for me. Sorry you are having a tough time.

  4. I am going through the same overwhelming emotional breakdown. After tons of screw ups by the insurance company and the pharmacy, I finally had my Humira starter kit for psoriasis. I worked up the courage to take it (I've injected insulin before without a problem). I set it up, hit the button, but my arm INVOLUNTARILY pulled the needle from my leg. :( So then, I immediately burst into tears at the shock of it going so badly. But wait, it gets worse...

    So the second shot... I am all upset and I think to myself, I will have my mother come over and do it. But I can't reach her. She is doing remodeling and is living in the cellphone badlands of Home Depot. I am upset. I decide to have my husband do the shot because I have left the shot sitting outside of the refrigerator for some time now, and if I don't do it now, it will be ruined. I give it to him, trying to be brave, but the tears keep coming. I am upset and scared and overwhelmed. Just then, I hear a bump upstairs. It sounds like my four year old daughter has possibly fallen. I yell up to her, "Are you ok?!" NO answer. I tell my husband, "Well, go check on her!" He starts to run off with the pen, but that isn't safe! I take it from him and do the dumbest thing ever- I try to cap it, and succeed in releasing the dose across my living room. "[Insert loud swearing here]" My husband comes running to see what happened and finds me absolutely bawling my eyes out with a pen that is shooting liquid onto our sliding glass door and curtains.

    I am a mess and I am out of TWO doses.

    I called Humira and they are sending replacements, a visiting nurse to help me with injection instructions, and more. My mother calls and she comes to give me the two remaining doses I have. I do them, and it hurts. I am now stressed beyond belief. I don't know if I can do this on my own. I don't know that I can continue this treatment. Part of me wants it to work and rid my of my psoriasis forever. Another part of me hopes it doesn't... because I don't want to go through this all of the time. :(