I take a medication called Humira. Like Remicade, it is also a TNF blocker and biologic. While Remicade is given intravenously in a clinic and 25% of it is composed of mouse proteins, Humira is given subcutaneously at home by yourself and is made of 100% human proteins, and must be kept refrigerated. It is delivered to me by a specialty pharmacy in Minneapolis, and my awesome landlords refrigerate it for me when I'm not at home to sign for the package. I keep it in my refrigerator next to the beer so I can relax after stabbing myself.
 |
| This is what a Humira pen looks like. Not too scary, right? |
Remicade, with all it's mousy goodness, failed me after only three infusions. (Read more by clicking here.) I could no longer tease my elementary aged siblings by explaining that I eat so much cheese and am small and squeaky because I am part mouse.
After I got the call from my PA explaining coldly that my body had rejected Remicade, I went into the first appointment I could get. She told me she thought another TNF blocker and biologic, called Humira, could help. I would take Humira twice a week by giving myself shots. I hoped this would work, because my options were quickly cutting down to surgery. After flaring for over a year and a half, I was also just tired of being sick, and was willing to give myself shots, no matter how scary it seemed.
 |
| My colon probably still looked very similar to this at the time, but slightly worse. This is my colon after a single Remicade infusion, but I was not on any meidcations for a month before I was put on Humira. I was bleeding during that month, and was considering checking myself back into the hospital. |
The PA did not teach me how to give myself injections. Instead, she thought it would be a great idea to have me pick up my starter kit from my local pharmacy and then make me do it myself. At home. Alone. With a panic disorder and a phobia of needles. Let's just say that was an incredibly cruel thing to do to a person, and I cried a lot. I also freaked out when I tried to give myself the first shot, and clicked the button mid air. My first injection's fluid landed all over my lap, and I viciously rammed the needle into my skin like an Epi pen because I spazzed and didn't know what else to do. Yeah, that doesn't work. Two hours, a box of Puffs Plus, and a major panic attack later, I did it. I actually injected the other three pens into my body and not the air. I slept well into the next day; the panic attacks and flare left me lifeless.
There were some minor blips with insurance at the beginning of the new year when my health insurance changed. The previous year, I had paid my deductible in medical bills, but when the new year rolled around immediately following my first starter kit, the plan changed. The evil PA did not tell me about Humira's insurance plan. I ended up having a panic attack in the Target parking lot when the insurance tech told me over the phone that it would cost me $20,000 a year for Humira. Between failing to tell a chronically ill young person who worked a part time, minimum wage job that there are other insurance options, and failing to teach me how to give myself shots, I fired the PA. I'm now with a wonderful GI I absolutely adore and think everyone should go to.
I started treating myself to a single chocolate after every injection the first few months I started taking Humira. Because of the panic disorder I had, I would also take anti-anxiety medications about fifteeen minutes before injection time. I'd turn off my phone, take my hearing aids out so that little noises wouldn't startle me, and would take three deep breaths before I clicked the button. I made my space as comfortable and peaceful as I could. This is embarrassing to admit, but I'd pretend to be someone else, and would coach myself through the steps, using lots of positive reinforcement and encouragement.
The shot itself is reminiscent of a wasp or hornet sting if you do not let it warm first. I usually let mine lie out for a half hour at room temperature, because the cold is what makes the fluid sting. I know some people use ice-cubes to numb the injection site, but I hate the mess ice-cubes leave and can't stand having cold skin. I'd rather feel the tiny, tiny sting of warm Humira fluid than have ice-cold water dripping all over my achy joints and forever freezing skin. While I am used to the sting, I still cringe because I know what's coming. I used to count to three over and over again for several minutes because I hate the sting.
As the months wore on, I realized I was less and less afraid of needles. I don't even need to close my eyes when I go in to get my blood drawn every few months (I still look away, though!). Now I'm a pro, and brag to my family that if any of them ever need shots, I will make it painless and quick. I was even brave enough to get my ears and daith pierced!
 |
| My colon after six months of Humira, and three months of a Humira/ azathioprine combo. This is about as pretty as my colon will ever look. I have tons of pseudo-polyps, stricturing in the tranverse (top/middle) colon, and thick scar tissue. But overall, not too shabby! |
Even if I feel braver, I still don't like taking Humira. My biggest struggle with medications is knowing that I am so ill, that even at my tender twenty-one years, I need medications to stay alive. That I have to give myself shots to keep my body well is emotionally crushing. Taking Remicade, Humira, never being able to stop taking pills, etc. has always had devastating effects on my spirit. I don't want to have to be this sick. I want to think that the time I puked on Christmas Day all over my Hollywood aunt was the very sickest I will ever be.
Don't let your doc do what mine did to me: you should either be trained on how to give yourself the shots in the clinic, or a nurse can come to your house and show you. A half a year after I started, I was finally trained, and I already knew everything by that point. Try to get a family member or close friend to be there with you when you're trained. You might want them there for the first few injections to help, especially if you are scared of needles.
It does get easier. I promise. It's never fun to have to give yourself shots, but each one you do will become easier as you build a thick emotional skin. (Not that you want to be thick skinned either, but if you need this medication, you're going to have to out of necessity.)
 |
| You should get a started kit with information on Humira, as well as a practice pen. Make sure you get to practice before you administer any medications. Ask your doctor or Humira nurse for a starter kit. |
Be brave, be strong, and remind yourself that you are a gutsy person. A little needle with a sting is nothing compared to the gut pain you live with day in and day out. That tiny sting is so worth it once the IBD symptoms start clearing up. If it's hard, see if a family member can be trained to help you out until you are more comfortable.
