Rheumatoid Arthiritis. According to the pamphlet they give someone who is newly diagnosed with a disease (in an effort to make light of the change in their life):
“Rheumatoid arthiritis is a chronic, painful disease that causes joint inflammation and destruction, progressive disability and premature death. Affecting about 2.1 million Americans, rheumatoid arthiritis causes substantial economic burden, with 50 percent of patients unable to work within 10 years of onset. Rheumatoid arthiritis is incurable, with most therapy focused on symptom relief.”
“Umm… Why am I 22 and have RA?”
Apparently RA affects mostly women in their “CHILD BEARING YEARS” as my doctor gently put it. Child bearing? I wasn’t even thinking about marriage!
“So how do I get rid of it?”
Apparently I can’t.
“Did I do something to bring this on?” Thinking of my dad, “Should I have eaten more vegetables? ...drank more water?”
Apparently there was nothing I could have done to prevent it (which was a bit of a relief since I think it would have been harder to handle if I knew I did this to myself).
So we began my treatment with some steroids, antibiotics and a whole bunch of stuff.
Essentially RA is an auto-immune disease where my body can’t tell the good from the bad so it just attacks everything. As my aunt put it when trying to explain it to my cousins, “Jennifer is self- destructing from the inside out. Kind of a Jekyll and Hyde thing. Who wants a soda?!”
All of the different pills I was taking were alleviating some of the pain, but I still wasn’t eating much and would get stiff in the morning and late at night.
In August, when I was in the Bay Area for our annual family reunion, my stepmother decided I was anorexic. I had to explain to her that I wanted to eat, but that the food made me nauseous. She did everything short of force feeding me through a tube and then eventually gave up. After returning to San Diego I would receive an occasional phone call from her quizzing me on what I had eaten that day. Sometimes I would make up something just because I couldn’t bear telling her I had eaten a croissant for breakfast and a cookie for lunch.
By September I was fed up with my treatment. I went to my doctor exclaiming that I was turning 23 soon and I didn’t want to go through the next 40 years living a half- life! I needed to feel 100% better and right now I was barely at 30%! Grrrrr. He agreed and told me about a drug called Humira that has been out for about 6 years. Its a much more aggressive treatment but everyone that’s on it says they have never felt better and they feel as though the disease has stopped progressing.
“Great! Give it to me!”
Apparently the treatment consists of injecting myself once every two weeks with a fluid that costs roughly $5,000 a shot.
Hmmm. Fear of needles… pain from disease… Needles?... not eating… would like to eat… Needles?...Hmmm.
So Scripps calls my insurance company and they agree to cover the medicine (my co-pay is only $15!). Scripps calls Rite Aid so they can special order the Humira for me. Rite Aid calls me to let me know its in. I call Scripps to set up a time for a nurse to show me how to (gulp) give myself a shot. I drag Ryan with me. Enter Nurse Ratched. She pulls out some sort of rubbery disk that’s “flesh colored” (like that’s supposed to make it easier or something). She has practice needles. She shows me how to clean the area on my thigh with the alcohol swab provided in my Humira kit. She shows me how to hold the syringe up, needle towards the heavens, and gently tap the syringe so that all of the air floats to the top (just like on TV!). She shows me how to gently push all of the air out of it until just a tiny drop of fluid comes out of the needle. She giggles, reminding me to be careful not to push too much out because ” This medicine is expensive! Tee Hee.” Heh. Shut up bitch. She shows me how to now hold the syringe “like a pencil” between my finger and thumb and with my other hand to gently pinch the cleaned area on my thigh where I am to do this horrible thing…
“Now JAB IT!! JAB IT REAL FAST!! JAB IT! JAB IT!”
I didn’t jab it.
I burst into tears at the sound of her shrill command. You’d have thought the woman was possessed by some old general giving the Japanese the order to attack Pearl Harbor!
Needless to say I couldn’t do it, and I still can’t. Ryan would give them to me and then eventually my friends’ boyfriends. Oh I can teach just about anyone how to give a shot but will never be able to do it myself.
And no, I don’t tell them to JAB IT.