educate more people on what Rheumatoid Arthritis is

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.

In October 2002, Ryan and I went to Vegas just for fun. We were able to get some cheap fares on South-worst and a special rate at the Venetian—- which is absolutely gorgeous! Anywho, the first night we were there, I woke up around 4 am with the most excrutiating pain in my shoulder. Having never broken any bones, sprained any part of my body or given birth, it was the worst pain I had ever felt in my life.

Not knowing what to do, I took 4 advil and drew a hot bath, thinking I might have pulled a muscle or something. The hot water made it worse and I dragged myself out of the tub crying and into one of the complimentary bath robes.

I decided I would ice it, hoping to numb the pain out of my conciousness. The Macgyver in me turned a shower cap and thread from a sewing kit into a “bag” of ice—- since for some reason, this posh hotel didn’t have a plastic bag ANYWHERE in the room! I eventually passed out once I couldn’t feel the pain anymore, but for the remainder of the trip, I couldn’t move my arm much.

When we got back to San Diego I was fine. Over the course of the next few months whenever I would wake up with the pain in my shoulder, I would amount it to over extending it at work or sleeping on it funny. Sometimes it was the other shoulder instead… I had pain in both, but not at the same time. Then I noticed my feet aching in the mornings. I would get out of bed and try to walk on the hardwood floor and end up having to sit back on the bed and rub my feet. I would later describe the pain as “feeling like my bones were bruised”, and assumed it was from the fabulous shoes I wore all the time. A small price to pay for fashion!

Eventually I started feeling pain in my knees, hips, back, neck, jaw and hands. Aside from that, I wasn’t sleeping very well because I could never get comfortable. As a result I was always tired. Then I noticed that I wasn’t just sleepy-tired but physically tired too. Every day around noon I felt like I had just run a marathon! In addition to this, I was loosing my appetite and the sight and smell of food was making me nauseous.

By late- April 2003 Ryan, my co-workers and my friends were all telling me that I didn’t look well and something wasn’t right with me. I had lost A LOT of weight and had to buy new clothes in size ZERO because that’s the only size that fit! Ultimately I developed a pulled muscle in my neck from sleeping in akward positions. I made an appointment with my general doctor so I could get some muscle relaxers (wheeee!!!). Having not been to a doctor since I had the chicken pox I was terrified she’d want to stick a needle in me… and I HATE NEEDLES! But she just asked some questions and weighed me (110 lbs! I haven’t weighed that since the sixth grade!), and rubbed my neck agreeing that it was too tense and she prescribed the fun stuff!

When she asked me if there was anything else, I said, “Oh yeah, my boyfriend wanted me to tell you that all of my joints hurt… its not a big deal really…I just need to get a new mattress.”

She frowned and started to examine my hands closely. She asked me more questions. Then she told me that issues with joints are a bit of a grey area and I really need to see a specialist, NOW.

So I made an appointment with a Rheumatologist in La Jolla at Scripps Hospital. They did some blood tests (Aaaugh! NEEDLES!) and X-rays… and do you know what I was thinking throughout all of this?

“Goodness! These doctors and radiologists are all quite handsome! I forgot that Scripps is a learning hospital and that they’re partnered with UCSD! Meow!” - I think I was in denial and unwilling to see the seriousness of the situation. All of the various test results were going to take a while and my rheumatologist and I scheduled an appointment for a week later.

In the mean time it was my mother’s 40th birthday and I flew home to surprise her. Upon seeing me, my mother was at first excited and then on the verge of tears as she looked me up and down. She would later descibe me as the “walking dead”.

Stepmother’s look was solemn as she tried to force happiness to see me, but didn’t do a good job masking her worry. My dad was his usual self and launched into a lecture of how I “just don’t eat right and don’t drink enough water”. I swear, I could walk in with a missing leg and be spilling blood all over the place and my dad would say, “That’s what happens when you don’t eat enough vegetables! Here have a salad, you’ll feel better!”.

My appointment with my rheumatologist was for the end of that week and my mother took it upon herself to call Ryan (while I was still in the Bay Area!) and tell him that she wanted to come down and be with me when I went to get my results. Knowing my mother’s effect on me Ryan talked her out of coming down on her own and suggested that she ask me what I wanted. Good boy. I called her and told her I would be fine, there’s nothing wrong with me, and we’ll plan for a better time for her to come visit.

Whew.