So, let's talk about "it". The commercials by Abbvie are not only endless, they are relentless. Every time one of those 30-60 seconds of hell comes on my screen, without thought or premeditation, I throw my arms in the air, cover my eyes, stiffen my muscles, and groan. PTSD? Maybe. Confusion? More likely.
Shortly after my diagnoses in February of 2014, and many drugs later, I was placed on the biologic (TNF-α inhibitor) Humira. I began in April 2014. The first dosage of this medication is a four shot sucker punch. I had to take all four "pens" in 24 hours. Two weeks later, down to two, another two weeks, now I was down to one every other week (probably for the rest of my life).
However odd this may seem, I was thrilled to be starting this "miracle" drug. I had four or more obstructions since my diagnoses (only 2 months time), and I wasn't getting any better with Pentasa, Lialda, Prednisone, etc.
We were hauled up in my family's shore house in Ocean City, NJ. Our little 1,200 square feet oasis by the ocean. I had my entire support group with me, my loving and doting parents, my little sister, my boyfriend of 9 years, and my two dogs. They were all there to help me overcome my nerves about a medication with so many side effects, form cancer to death, and to enter into this new phase of my disease.
I was sitting on the couch with my pants pulled down, as vulnerable as ever, as you must inject it in either your thigh or stomach. I held the pen above my thigh, prepped and cleaned as instructed. It took me a few seconds, even though I have absolutely no fear of needles. My boyfriend had the timer on his phone, and was ready to count to ten seconds as soon as he heard the "click" of the pen as the needle pressed into my skin and down into my subcutaneous tissues.
What I was expecting: a pinch from a needle and maybe some sensation for the ten seconds that followed as I held it there. What I got: an intense burst of burning and stinging that I never expected. Now, I am no baby when it comes to pain. I have been through obstructions, countless Heparin shots, more IVs than I could ever count, but this...this was different. This was acid pouring into my body, this was fire in my thigh. I screamed, unexpectedly. I then cried. I cried like I hadn't cried since I was diagnosed. It wasn't because of the pain, it wasn't because of the side effects, it was because this was my life now.
This was one of four. How in the world could I self inflict this type of injury on myself THREE more times within the same day? I immediately felt a rush of fatigue pour over me, more than likely from the experience itself. That day, it took me minutes, just holding the pen above my leg, before each subsequent injection. I slept almost the entire day in between.
Now, almost two years later, I am still on Humira. I have tried everything I have seen online, everything my personal Humira nurse suggests, everything my IBD friends tell me to do. I leave it out until it is room temperature. I pinch the area first. I ice it. I have tried multiple locations. They all hurt the same, and they are all excruciating.
Do I know if Humira is saving my life? No, and I probably never will. Essentially, I became the most well after my surgery, but I can't be taken off of my Humira incase my pesky intestines wanted to spread the Crohn's around. However, I will continue to deal with the pain. I will continue to self inflict it, I will continue to deal with the fatigue that comes the day after, I will continue because I refuse to let Crohn's overcome me again.
I'm used to it now; I bite my lip and let it pierce my skin and anticipate the pain. I can even time it myself now. I haven't lost any hair, I haven't had any terrible side effects aside from some fatigue and aches a day or two after the injection. I am always checking my skin for signs of skin cancer, and my lymph nodes as well, as these are two main cancers Humira can cause. However, as with all medicine, risk vs. benefit...and just like everything when you have a chronic illness, you fight it, you overcome, and sadly, it becomes your new normal.
This is my Humira story. What's yours?
Love & Thanks,