In the years prior to diagnosis, I wrote more about my parents' health. They both experienced difficult health issues during the last two decades of their lives: a pacemaker for one, a new hip for the other, failing eyesight with age, cancer surgery for both, and then Alzheimer's and Parkinson's. I kept track of their symptoms, prescriptions, appointments (with my husband's help) ... I was their health proxy, and so I was in contact with their doctors (with my sister's help) ... and what symptoms I had myself took a back seat until their issues brought closure to their lives.
And then I wrote of my symptoms, fully expecting to follow my parents' path toward Parkinson's Disease. But along the way diagnostic tests, appointments, doctors' names and my own health proxy (my husband) became the topics in my journal. The completion of those tests led to the diagnosis of relapsing remitting multiple sclerosis. It was not what I'd anticipated, but it was what I got. And with it, I was given a prescription for a disease modifying drug, but no cure.
My journal entries darkened with anger, and trembled with frustration, anxiety, and fear. How could I have multiple sclerosis? No one I knew had ever had this diagnosis. How could I give myself an injection each night? How could I ask my husband, who had managed his own parents' illnesses, involving cancer, blindness, COPD and depression, as well as assisting with all my parents' care ... how could I ask him now to help me? How could I go into my classroom each day for another six years, and finish my career on my feet, with the dignity I'd worked so hard to preserve?
My writing helped me to realize that my disagreement with this diagnosis might be disputed by scientific evidence ... the lesions were there ... but my inner self believed that the diagnosis was wrong, and so the treatment was wrong. It was horribly expensive, and though I had a good insurance policy and paid only a small fraction of the thousands of dollars it cost each month, I knew that policy holders' premiums were going up each year, as was the price of my medication. I felt it was unnecessary; I felt it was wrong; I feared that, if it was wrong, it could be causing more damage rather than repairing anything. It made only vague promises of perhaps slowing the progression by 30%, but no guarantee for any one patient. And it interacted with my immune system, which worried me.
I was experiencing no relapses, but I attributed that to my change in menu and my loss of fifty excess pounds, the resulting lowered blood pressure and better energy levels. But through the four and a half years of this treatment, I became more depressed and more fearful of what it might be doing, and writing out those fears, and explaining with written words those disagreements and my rationale for them, I was able to make the decision to follow my heart and discontinue the treatments.
Had I not written my story, I may not have had the courage to follow my beliefs. I am no longer taking the injections with their prohibitive financial costs ... I no longer feel like a fraud carrying a diagnosis that didn't seem real, and I am feeling better each day. I recently walked five miles to raise money for MS research, and I have no reason to stop doing that.
Some say my feeling better is simply a placebo effect; I want to believe that I am better without the injections, and so I believe I am feeling better. But I say perhaps it was my own belief that the medication was doing me harm that made me weaken while taking it, and so not taking it has relieved that burden of worry, depression and anxiety that I had taken on myself. Who is to say whether they or I am right or wrong?
The experts in the study of multiple sclerosis are also conflicted; the assumption that treating the immune system will slow the progression is now being disputed not just by patients like me, but by doctors who are saying this may be a metabolic issue rather than an immune disorder; it may be related to the nutrients needed for healthy mitochondria, in which case my healthier diet was the right choice to make, and that is a validating statement for me. Vitamin D is finally being discussed more openly rather than being left unaddressed.
I will stay in the seven year Parkinson's Disease risk study with the National Institute of Health in Bethesda, if they will have me. There is some question as to whether my current prescription of anti-depressant will conflict with their protocol of testing, and so I may not be able to participate until I have been able to stop that medication. I will write about that in the weeks to come. If I am in their study group, their testing will show any indicators of Parkinson's Disease earlier than might be known if not in the study group. And contrary as it sounds, that medication treatment is one I would willingly take, in an effort to study its efficacy and benefit future generations of my family, and beyond.
I will continue to walk for MS, because I can. And in time I will begin to walk for Parkinson's Disease fundraising, for as long as I can. I still believe that is what lies ahead in my future. The tremors that I experience resemble those of my mother and father. Time will be the judge of whether that, too, is right or wrong.
For the month of April, I've renewed the discount at CreateSpace for Multiple Sclerosis an Enigma. To receive 35% off the regular
price, go to this link: and enter this discount code at the checkout:VXXURQMH
I've never understood the fuss about placebos. Who cares as long as it works? Congratulations on finding a plan which is working for you.
ReplyDeleteSometimes I think our quest to understand the "why" and the "how" get in the way of appreciating the "what." I know they do for me. I had a hard time with hypnotherapy until I was able to let myself relax and let my mind work its way out unguided. I still use the techniques on bad days, but it takes a long time to shut down my mind for a reboot.
I have sisters who enjoy going to medium performances at a restaurant ... I don't share their enthusiasm for public readings, and believe instead in the messages of dreams...
ReplyDelete