Another day

The last few weeks have been the usual. Work, church, meetings, appointments, work. I find I am having a very difficult time keeping track of what day it is. Maybe I need to start putting a big ‘X’ on the calendar at the end of each day. Part of the usual routine the ongoing adjustment to living with (finally diagnosed) rheumatoid arthritis. I fully acknowledge and appreciate that to some it might not sound like any big deal, but to me I find that mentally it is a big deal. While I am thankful for a diagnosis and a course of treatment, I find myself frustrated with several aspects of the whole bizness.

I don’t think that most people have any real idea what rheumatoid arthritis is. R.A. is not the same as osteoarthritis. Osteoarthritis is the most common joint disorder and is characterized as being wear and tear on a joint. We get older, we experience stiffness and less mobility, especially in those areas where we might have suffered an earlier injury. By the time you are 70, almost everyone has experienced some sort of osteoarthritis. As we age, the cartilage wears down and you get more areas where bone rubs on bone. While this is not pleasant, it is a natural part of aging, often see at a younger age in people that are very active in sports and/or exercise.

R.A. is very different. R.A. is an autoimmune disorder where your body mistakenly attacks healthy tissue. It can strike at any age. The cause is unknown. It is a long term disease that causes inflammation of the joints and surrounding tissue. R.A. can affect almost every part of your body including your lungs, heart, and eyes. It causes fatigue as well as severe pain and decreased mobility. It is not something that can be ‘cured’. So if someone ever tells you that they have been diagnosed with rheumatoid arthritis, it isn’t helpful to them for you to compare it to the arthritis you have in the knee you hurt when you were in high school. While I can appreciate that your knee is stiff and painful, it is not the same as what I (and others who have RA) experience on a daily basis.

Every morning when I wake up (and this is after I have been awakened several times during the night because of pain in my joints and the need to shift into a more comfortable position), the first few seconds of consciousness I feel great. Then my sensory function kicks in and I ache and hurt everywhere. I shift my leg and my pain shoots through my right knee (the one that doesn’t seem to want to bend the way I need it to whenever I go down stairs). I move my foot and again pain shoots through every joint, up my leg. Then I move my arms. A ring of pain encircles my elbows as I try to straighten out my arms. I lay there for a long while, not wanting to move. Finally, I force myself to sit up and I swing my legs over the bed. I stand, putting weight on my feet and the joints that have been worn and thinned by a combination of a deformity in the bone formation-- weakened by the significant amount of fluid surrounding each joint that slowly has eroded the bone density of the joint. This is how my mornings go. I hobble around until slowly the joints begin to warm and loosen. It is not just in the waking moments of each day. If I sit for too long (for me I find as little as 20 minutes in a stationary position can do it), I find that most of my joints seize and I have to go through the warming up process all over again.

I describe all of this to give a little glimpse of what it is like for me. I do not share in an attempt to garner sympathy, but instead to offer information.  Again, I am thankful for a diagnosis where my doctor is now working to find something that will work well for me. While we cannot undo the damage that has already been caused, we can find treatment that will (hopefully) help prevent further erosion and will reduce some of the symptoms. The first round of drugs did not go well for me. I could not tolerate the drugs used to treat cancer. My skin peeled, I had excruciating headaches not to mention an attack on my digestive tract. We have since moved on to what are termed as ‘biologics’. To me that is just a silly term that describes VERY expensive medicine that is not on my insurance carrier’s drug formulary. Imagine my surprise when I was told that the medicine I needed would cost $1950 a month and that the insurance company was only willing to be half of that cost. To say I was stoked doesn’t adequately cover it. So, I picked up my first month’s supply, crossed my fingers and hoped that it would work. After 2 weeks I don’t feel much different but I can tell that the obscene swelling in my feet has gone down to the point that I can squeeze my feet back into my Danskos (which is a good thing because I have several pairs and I really don’t think I can afford to pay for the medicine AND buy new shoes!). We have learned about a program that the drug manufacturer offers that helps pay the uncovered costs of the medicine. Hopefully it will help in a significant way.

With the diagnosis comes other realizations. As I have said, my new medication routine involves very expensive medicine that needs to be refrigerated. As that new part of my life sunk in, I realized that this may greatly affect our desire to live in parts unknown some day. We had hoped and planned that after Annika graduated from high school, we could finally start our ‘second career’ working for a mission-related organization in some foreign assignment. Now we are not sure how this will all factor in. I feel that there may be some more change in mindset in that plan.

The other realization, surgery. Two weeks ago I was told that I will need surgery on both feet. I have deformities in both feet that only surgery can correct. The RA hasn’t caused the deformities, but it has exacerbated the deformity issues to the point that surgery is the only remedy to alleviate the pain that I constantly feel. The first surgery will be December 14. They tell me that I will need to wait at least 3 months, then I will have the second surgery. The surgeon tells me that it takes the average person 9 months before they are fully healed. So, I anticipate a fun year! Again, I am thankful for a treatment option, but I am a bit overwhelmed thinking spending the next several months hobbling around. Honestly though, I am not able to walk very much now, so what is another year?