When I was first diagnosed with two types of Arthritis, which in itself takes years of testing, I was fairly upbeat. After all, now that we had a name for what I was experience that meant I could start treatment. It was with little suspicion I began my first course of treatment, massive doses of steroids, that I was facing not just “a treatment” but a life time of tweaking and testing.
Most immune illnesses are not “one size fits all”. My own wonderful rheumatology doctor informed me that I could possibly have an added disease “We don’t have a name for yet.” It appears that each year more disease are discovered and named after the physician detective that traced it down. The important thing my doctor assured me was that “The treatment is pretty much the same for all of them, that treatment is whatever what works for you.”
My wonderful family physician and I are friends. I’ve been seeing her for other 20 years. I won’t call her by her first name though. She’s my doctor first, friend second. I’ll call her Dr.M here. She has seen me through surgeries and illnesses galore, and my life is better for her care and teamwork approach to health care. I’m always an equal partner. Dr.M offers suggestions, not statements. She also understands I’m a skeptic, or make that SKEPTIC. So she gives it to me straight. “It” is often something I don’t want to hear, but she knows that reality is better than false hope.
Dr.M has an appointment with me every 6 weeks to keep an eye on my overall health while I take this large cocktail of medications. Her job is to make sure all the specialists don’t kill me. I had been about a year into the arthritis treatments when I mentioned to her that I was a lot less angry and more accepting of the limitations and changes in my life. Limitations I had been sure at one time was sure the medication would cure.
After all, I’d seen all the advertising on TV and in magazines for those Arthritis drugs. The ones where grandmother is swinging her grandchild in the air, or grandfather is off to play tennis. My tennis racket had finally gone into a yard sale. I was not believing the hype anymore. Dr.M shared with me that it took about a year for most of her patients to adjust to their new limitations with any serious illness. Patients hold out hope for a long time that they will soon be “back to my old self”. Then patients get angry.
“Surely modern science has better treatments for my disease than I are getting!” is a common thought during this period. People go online a lot. They start to read beyond the hype of the pharmacy sites and get to the online support groups. Patients often try and fail at something they could do “before”. It’s heartbreaking and depressing.
My brother sent me a quote once that goes “Depression is anger without enthusiasm”
I was both enthusiastically angry and un enthusiastically angry. I’m still pretty angry at times. The enthused anger is lot more healthy. I need sometimes to just talk to my husband or a friend online. I just have to say “You know this is hard, it’s really hard. I don’t like it. I want to do things again. I feel I’m missing out, and people will forget about me because I can’t keep up.” I just need to say that, and someone to just listen.
Part of the problem is that in the United States, people that do the extraordinary are considered ordinary. We are, as Americans, expected to rise above our disabilities. We are supposed to be full of vim and vigor. The media features people over 100 with their drivers license. Everyone comments “I want to be like this man!” It seems possible that we could, through will power and not genetics, all be driving our cars when we are over 100.
The press does not hint that this man is extraordinary, instead he touted as all American. There is no geriatric doctor saying “I know many people over age 100 and none of them should be driving. You will most likely be dead before age 100, but if you do make it you probably should not be driving a car. This man is the exception.”
Another example is the truly heroic and lovely young person who was surfing and a shark eats a limb. The first thing the press asks this young person, who is still in the hospital ,”Are you going to surf again?” The only answer the person can give is “Of course! I’m not going to let a shark keep me from the sport I love!”
But what if the answer had been “Well, I just had my arm bit off by a shark and I think I’ll keep away from the water. It was pretty scary and there are other sports I might enjoy.”
My neighbor had a horrific crash on his motorcycle. He loved his Harley. This crash though resulted in a long hospital stay and he had 5 surgeries. He’s held together by steel rods and pins. He has to walk with a cane now. His Harley buddies were all “We are so glad you are out of the hospital, when do we go riding again?” Because in the United States of America, if you fall off the horse (or hog) you get right back on. He got back on the bike and the pain was overwhelming. He could ride, but it was painful. It was never going to be like it was before. He considered the cost in pain, and decided to go for a special 3 wheel sort of motorcycle that cushions the road a bit more. His hard core Harley friends drifted away. He’s a young man riding an “Old man” motorcycle. Also those long road trips are thing of the past. He was angry, then he adapted. He’s still angry but also realizes adaptation was easier than trying to make his old life work. He could still ride a young mans bike. His friends would applaud his courage and strength. It would hurt like hell though.
I recently flew to Las Vegas from my home in New Hampshire for a conference. It was my first time flying in over 2 years. It hurt like hell. Sitting upright is fearfully painful for me. A slight incline is actually the safest way for me to sit. I did it because I really wanted to attend the conference and it was worth every moment of pain. It also showed me that traveling was now going to be a different game. Before I had serious back pain, the beginning signs I know now of my illnesses. Now it was a new game. I can travel and will do so, but I no longer accept that it will be without cost.
It was important for me to fly and know “This is what it feels like. This is bad but doable.” It took a huge coordinated effort of wheelchairs and transit chairs and timing of medication, but I did it. It’s never going to be easy, I had to travel a day early to the conference to spend a day in bed recovering from the traveling! If I had done this in my angry phase, I would have been devastated. Now I am in the “Well what can I do, and is it worth the price in pain?” Also, there is a lot of anger when I can’t do something I could do before, and avoiding the attempt over and over means I am more at peace with my new limitations.
One thing I have for the most part given up is kayaking. I would go for gentle, but often hour long kayak paddles on the lake. However, I know now I will pay a price of a sleepless night and perhaps even an ER visit if a flare gets too painful. Sometimes neighbors at the lake will say something along the lines of “Oh are you going to let a little arthritis keep you from paddling?” my answer was “yes!” It may be un American, but I’m more worried about how I feel now than how others feel about me. (Also there is a double kayak and I enjoy going in that as someone else can do most of the paddling!)