I was asked last night how old I was, to which I needed to pause and think about. A family member answered for me before I came to the correct number in my head. At least I didn't say the wrong number and took the time to think about it this time. I turn thirty four on Wed. October 1st. My journey has seen many ups and downs, and been full of love and compassion throughout the last year. This week marks the end of my thirty third year of life on this beautiful planet and the beginning of my thirty fourth. It also marks the end of one year of trying new biologic medications to treat my rheumatoid arthritis, with no positive results thus far.
One year ago this week I found out I would not be able to receive my Remicade infusions that had been what I considered my lifeline for the last two and a half years. It helped my energy levels, slowed the progression of damage from the rheumatoid arthritis, which in turn lowered my pain levels, which in turn helped me sleep better, allowing me to live a somewhat 'normal' life. My secondary disease, fibromyalgia, was better controlled, because my rheumatoid arthritis was better controlled. It's a domino effect. And when reversed or stopped, life for someone living with autoimmune disease can be pretty great!
Not being able to receive my infusions here in Sioux Falls, at the hospital my doctor practiced at meant I had to change medications, without any other choice then to go off of biologics while waiting to get in with a new doctor, or flying back to Colorado. The latter two didn't feel doable at the time. So I switched biologic medications. My unending optimism I get from my wonderful mother, gave me the tools I needed to wait it out for three months while giving the medication the proper window to 'work'. It did not, so in January I switched to yet another biologic medication, with the same optimism, believing it would work. Of course it would. Then in May I switched medications yet again. And now my insurance will not cover the medication I'm trying and through my optimism feel may actually of been starting to 'work' towards the end of July. I went to get my third infusion of Simponi Aria a few weeks ago, knowing I didn't have insurance coverage for the drug, but opting to pay cash. This did not work, as I needed $3,000.00 more then the already high price I had planned on paying.
When one disease is not being effectively treated, in many people, and in me, the secondary disease is caused to flare. This has been the case with my fibromyalgia. The domino effect in motion. One of the many symptoms of fibromyalgia is essentially memory loss and cognitive dysfunction. My memory loss and cognitive dysfunction have reached a level that has myself and my doctors wondering if there is another cause. It causes me to forget what age I am, show up for appointments on the wrong day, several times in a row, drop Gavin off at hockey practice at the wrong time and forget a whole gamut of things that affect everyone in my family. Frustrating for them to say the least. My positive spin on it is that memory loss allows me to live in the present. A desire and mission I've been on since my interest in Buddhism began. The ability to be present is truly a gift, so I am trying to see the gift in memory loss and cognitive dysfunction. I began seeing a neurologist last week to eliminate other causes. At the end of it all, it may just be part of having active fibromyalgia, which is affected by not having my rheumatoid arthritis affectively treated.
That is my thirty third year of life in a nutshell. Everything else, although wonderful, does revolve around my rheumatoid arthritis and fibromyalgia. No matter how hard we try to get away from that fact, at the end of the day it is my truth. In that I have learned how to sit in the present, and that is the gift of my thirty third year of life!
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