A depressing thought if you stop right there. But the greatest thing about being human is that we are given free will. We have the personal choice to follow whatever rules we want to follow. We don't HAVE to follow all of these rules, we can set our own rules, we can choose to follow whatever rules we want. Certain rules we should follow, state and federal laws of course, but again, we have the choice whether we follow them or not. If we do not we have to face the consequences of such a choice.
Where am I going with all of this? Well living with JRA for as long as I have I've always had to follow a certain set of rules that came with the disease. These rules were established by many people, my parents, my doctors, my therapists, my teachers. When I was too little to make my own medical decisions it was up to my parents and doctors to establish the 'rules' of my life living with JRA. They decided what medications I would take, what therapy I would go through and what splints, braces, and surgeries I would take on all in the name of treating, battling this disease that so little was known about. Some of the rules were that I would not participate in gym class in school. They believed that it would be too painful and difficult for me to participate so to prevent further damage to my joints that were already hot and red and swollen I sat out of all my gym classes. When I reached 8th grade I wasn't allowed to go on the class field trip to Washington D.C. because the staff did not want to be responsible for making sure I was able to keep up with the group, administering my medications, and honestly I don't think they wanted the liability of having the 'crippled' kid on the trip. I had to follow their rules. I had to live my life according to what they believed was best for me, whether I agreed with it or not.
Then I turned 18. All the decisions then became MY decisions. Every medical decision was mine to make and mine to live with. If I didn't like them there was no one else to blame but myself. I couldn't argue "it's not fair!" and stomp off hating my doctor, my parents, or my teachers because the decisions, the new rules, were all my own and I had to learn to live with the consequences. If I chose not to take my medicines I had to deal with the resulting pain, stiffness, and swelling. I loved it. I loved having the 'power' to decide how I was now going to live my life with Arthur. When I turned 18 I no longer wanted to be considered a 'kid' with a 'kid' disease, so I referred to it as "Arthur". Somehow that seemed a little more grown up but not entirely old person disease sounding as "Arthritis" sounded. What can I say, it's all in how you say it when you're 18 and stretching your decision making skills.
There were plenty of times I wished I had someone who would just TELL me what decision to make. Someone who could just set the rules for me because at times it just became so overwhelming trying to figure out what rules I should follow. I was already trying to figure out the rules of dating and dating as a young woman with a disease most other 18 year old boys don't come across. Then I was trying to figure out the rules of attending college while also dealing with Arthur. Pulling all nighters to write a paper or cram for an exam only to find myself frozen into a claw like hand position the next morning making taking the exam a form of slow torture with every tiny bubble I had to fill in. Spending my weekends going to clubs and dancing only to slowly turtle walk to class on Monday because my knees were hating me for seeing how low I could go. I was learning my rules and boy was I hating them.
Then came the time I had to make a real decision about my health. For years I had been on methotrexate, I was part of the original blind study that brought methotrexate into the pharmaceutical marketplace. This all happened while my parents were still responsible for making all my medical decisions. I didn't know much about the medicine except that it let me move pretty well and I was no longer exhausted while in school. I felt almost...normal. I remember also at one point they needed to do a test on my liver. I was in 4th or 5th grade and I didn't have the benefit of watching "ER" or "Grey's Anatomy" to keep my medical lingo up to date. There I was, a girl sitting on an uncomfortable exam table in the rheumatologist office. Wearing one of those flimsy stupid clown covered gowns swinging my legs while listening to the rheumy explain to my parents that they needed to do an autopsy of my liver. Wait. Autopsy? What the heck are they talking about? Isn't an autopsy done when you are dead?? I was filled with terror, my rheumy and my parents were going to kill me to look at my liver. Holy. Crap. Now yes, I know now that I should have spoken up and asked what they were talking about. It certainly would have saved me a few weeks of terror filled nights wondering how they were going to 'do me in'. The day came for the 'autopsy' and I had left at home in a spiral notebook my final will and testament asking that I just be buried with Teddy, my teddy bear, and that my sister could not have any of my things. During the 'autopsy' I wasn't put 'fully' under, just asleep enough that I wouldn't realize that they were sticking a very long evil looking needle into my liver to snip tiny pieces of the organ to be examined under a microscope. Soooooo while being in this 'twilight' sleep I was showing off my graphic vocabulary knowledge by swearing at the surgeon throughout the entire procedure. I was extremely pissed off that they were going to 'off' me before I even got to learn how to drive. Imagine my surprise when I woke up in recovery, lying on my right side fully alive. Imagine my embarrassment when the surgeon came in and in a very low gravely and slightly irritated voice informed my parents that I had a very 'colorful vocabulary'...
Ok that was a long side road but it brings me to this, the methotrexate was working but while it was working to control my Arthur it was also damaging my liver. In 5th grade instead of having healthy red liver cells mine were more pinkish in color. I was 10 and had liver damage. Nothing too serious but always something to think about as I grew older and grew closer to the wonderful age of college drinking. Surreeee I attended a college that was a 'dry campus'...but since when did the 'rules' of the campus apply to me? Or my roommate? I had to make the decision then though, do I follow the rules of methotrexate and abstain from drinking alcohol or do I decide to follow my own rule, do some good ol' fashioned ill advised drinking like all the other 'normal' kids were doing and face the consequences of possibly speeding up my liver damage...I chose to live what I felt was what I wanted. I wanted to have the college experience and in my mind that included drinking. It was my choice and I lived with it, hangovers and poor choices be damned.
This first foray into making a medication decision opened up a whole new way of looking at life and how I wanted to live it. Did I want to live according to the rules of my medications or did I want to live the life I felt was what I was meant to do? If I didn't take my medication I couldn't move, but if I lived my life to include drinking, being out in the sun it could increase my chances of organ damage, cancers, even death. I realized that yes, I wanted to take my meds so I could feel as normal as I could but I also wanted to know that at the end of my life I had LIVED. I had sucked the very marrow of life out of its bones and I could die knowing I didn't let Arthur set my rules. Yeah, he'd have a say in it but he wouldn't dictate it.
In the more recent years watch dog groups have become prevalent and have made it their mission to cry out against the side effects of some of the more affective arthritis medications out there. This really pissed me off. As a result of their outcries one medication was completely removed from the market. What made me so mad was that these people didn't even HAVE arthritis. They never had to make the decision to take the drug or not take the drug. They assumed that those of us who chose to take it must not have heard about the side effects, the possible heart, liver, and kidney damage. The possible increased risk of cancers. If they had bothered to ask us we would have told them, yeah. We know. We have to choose. No one ever said it was an easy choice. But we had to choose, live life in pain, unable to move because our joints are frozen from damage and inflammation, be confined to a wheelchair or worse, a bed. OR we could take this medication, have it work, and be able to go for a walk and see the world outside our home or the hospital. Have the ability to take a vacation and stick our feet in the sand without the agonizing cracking and popping of our toe joints while doing so. Either way we chose, it is OUR choice to make, not theirs. We face this choice each and every day and we strike the balance between the good and the bad. Is it worth taking this medication despite the hair loss, nauseous, fatigue?
Today I saw my rheumatologist for my 3 month visit. At our last visit I had just started taking Humira, a biological medication that is injected every other week. I know Humira can increase my chances of certain cancers. I knew all the sordid details of the medicine but at this point I was having so much stiffness and pain I knew I needed to do something. I made the choice. I was going to live with the consequences. In those 3 months I kept coming down with MRSA infections. Every time I injected I would spend the next two days feeling down to the bone exhausted. After those two days yes I felt good, obviously I was running, I had lots of energy and could live my life the way I wanted. But after 3 massively painful MRSA infections that were on my face that would wipe me out for at least a week. Banned to the couch and trying to hide my face when taking my kids out in public I came to the realization that it just wasn't worth it. Taking this medicine the good was not outweighing the bad. I decided I wanted to ask my rheumy today about either backing off entirely from the biologics or switching to a different one.
After getting into the exam room (hallelujah as an adult I no longer have to wear those STUPID flimsy clown gowns!) I filled out my "what is wrong with you today" form for the doctor. Using the lovely number chart I circled that my pain today was about a 6, my morning stiffness was only 5 minutes long however I found that in the afternoon my hands, fingers, and knees were extremely stiff and weak. Just that morning I had picked up a carton of eggs and promptly dropped it onto the garage floor because my hands lost all strength. I circled that I was tired, had headaches, dry eyes, and skin infections. Yep, I was glamorous on paper.
My rheumy came in and asked how I was doing, I answered with a less than enthusiastic "ok" and we got down to it. I told her about the repeated MRSA infections, the nausea and down to the bone marrow exhaustion and that I felt that it just was not worth taking the Humira to feel this bad and to be perfectly vain, look this bad whenever I would get an infection. As much as Hollywood and TV land has a current obsession with zombies I do not wish to look like one of the living dead on a daily basis with oozing sores on my face. Seriously it was just not a look I wanted to continue sporting. My rheumy got quiet and clicked away on her little laptop. "Well, ok, but your labs look fantastic. Are you sure you want to stop taking Humira? I mean, your labs really are great!" Um, I'm happy my LABS look great but I DO NOT. Hello, oozing facial sores. Not sexy. Black under eye bags and blank facial expressions, not SEXY. In the end the rheumy set my rules. She decided that we are going to continue taking Humira and I should just go see an Infectious Disease doctor about the MRSA. In her mind it was no big deal to live with constant massive infections as long as the lab work looked good. In my mind it is a big deal to feel so ugly and in so much pain from these infections that I hide out in my home. So why did I let her set my rules of living my life with Arthur? As I said earlier, sometimes I just want someone else to make the decisions. I'm tired. I'm frustrated and I want a break.
Tonight I sit here wondering, whose rules am I going to live by? Certainly not Arthur's. I have a 10k on November 6th that I plan on running. I'm registered, I'm going. Do I live by my rheumy's rules and live with massive infections because my lab work is pretty? Or do I need to make my own rules up again? How do I strike the balance of treating Arthur while also continuing to suck the marrow out of the bones of life? I don't know tonight. I may not know tomorrow either. I know I will figure it out because it's my life and I will decide. I will decide how I will live. I will decide what rules I will follow. I will decide what consequences I am willing to accept. No one else will.
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