I am an optimist. But I am also a realist. When faced with a painful situation, I sometimes dance around the issue for a few turns. Then, painful, or not, I face whatever it is, deal with it and then do my best to move on. Stiff upper lip and all that.
Each time I was diagnosed with a new cancer I did just that. I never once thought why me. I had the surgery, the chemo, the radiation. Suffered through it. Recovered for the most part and moved on. I felt that none of those three cancers would ever return as the treatments were brutal to my body and left nothing unaffected. My method of handling problems worked with cancer.
Then I was diagnosed with rheumatoid arthritis almost eight years ago. RA is a painful, debilitating and a lifelong disease. It is a disease that must be dealt with daily. RA will not go away just because I am weary of living with it. It is forever.
It is not a problem to be solved. It is a reality to be managed. I see so many others I know suffer through their chronic illnesses. What makes managing so hard is that the suffering is not temporary or occasional or uncommon. It is embedded into the fabric of our lives. Managing pain. Managing energy levels. Living with complications from our diseases or from the medications used to treat them. Fear of what is coming next.
Then there are the medications for rheumatoid arthritis. These are the DMARDs, the Disease Modifying Anti-Rheumatic Drugs. These include the popular methotrexate and hydroxychloroquine. They also include the biologics such as Humira and Actemra. All these drugs have side effects and their own sets of complications. None of these drugs offer a cure. The decision to take them is sometimes easy because a person with RA can feel desperate. The decision can be difficult. The biologics are expensive even with insurance.
And I have grown to agree with the many who say rheumatoid arthritis is a bad choice for its name. Those of us with RA do not have ‘a little arthritis’. We have a painful, systemic, autoimmune disease that is totally and painfully debilitating. It causes systemic inflammation that courses throughout the body and causes a fatigue that is exhausting.
My RA is seronegative. Seropositive RA has more bony erosions. Seronegative RA has more severe inflammation. After the first few years their courses are similar.
RA affects the joints symmetrically, right side and left. It can inflame any or all the synovial linings of moveable joints, tendons, and bursae. It is an inflammation to be feared.
Those with RA are highly likely to become work disabled. This is true today even with the newer RA drugs available.
Some think the RA biologics are the wonder drugs of our time. For some, they are. They are at least for a time. The best relief that is possible from a biologic DMARD is 70% and that is for a small number of lucky people. So far, no medication causes complete relief. Biologics do not work at all for about a third of those with RA. Some have 20% relief. Others have 50% relief as I did when I was on Orencia until it stopped working. So everyone with RA is left dealing with some of the symptoms.
The biologics act by interfering with specific inflammation pathways. There are many inflammation pathways in your body. If your medication is not affecting the pathways being affected by RA in your body, you will not experience relief. So far RA biologic medication is an expensive crapshoot. Matching a patient to the right medication that will probably not help more than 20-50%. And yes, I do agree 20% relief is better than none.
There are many of us who have had rheumatoid arthritis for years. We each have our own personal experience with the disease. We have learned to do what we need to manage the rhythm of our daily RA experience. Managing energy levels. Managing flares.
We eventually come to understand that our RA will never go away. RA is not a problem to be solved. It is a disease that must be lived. Even though we struggle, we try to take days as they come living the ebb and flow of this unpredictable disease.