My blog turns eight this month! This “anniversary” also means that it has been eight years since I have been on long term disability. For over eight years, my life has been filled with medical appointments. First it was a search for a diagnosis that has since turned into multiple diagnoses and now it’s a continued search for effective treatments. It has been a long journey filled with challenges and frustration.
I’m not going to lie, I’m still figuring out how to navigate a “new normal” as a chronically ill person despite having been living as one for so many years. My symptoms are extensive and are debilitating in general since my body does not like to be vertical, and render me completely useless on migraine days. So being sick sadly became my de facto, unwanted full time job. I often get asked how I spend my time. Surprisingly time goes pretty quickly even on my most miserable days. I lay in bed or on the couch, sometimes I just lay there with my eyes closed or sometimes I sleep when I am very fatigued. I read when my head is not raging, and I enjoy playing Words With Friends and Candy Crush. When I am not feeling too discouraged or am feeling engaged I often find myself researching treatments or possible other ideas behind some of my symptoms to discuss with my care team. At times, I am battling with my insurance company, and at least once a year I have to file paperwork to show that I still qualify for disability. (I still depend on my parents for virtually everything and still seek medical care so it really frustrates me that I have the added stress of having to deal with this when it is very obvious that my current life is a daily struggle.) Of course I have medical appointments. Some are done virtually thanks to COVID, but some require me to be in office and those take up a lot of time and energy. All activities just take longer and exhaust me. Just bathing is a strenuous activity. Life has not gotten easier in eight years; in fact, the past few years have been more challenging.
But I try to focus on the positives. I am lucky that after fighting for it, I got approved for disability. Though truth be told, I am still traumatized by the experience. I am fortunate that my parents are able and willing to be my fulltime caregivers. I do not know what I would do without them and my sister and brother-in-law. I am also fortunate that I have not yet gone into medical debt. That is a reality for so many Americans. I am relieved that despite continued run-ins with bad doctors, I have a good core care team. Their understanding of my complex and challenging conditions should be the standard, not the exception so I am grateful for their continued care as we navigate a healthcare system focused on profits, not patient care.
I am also trying to hold onto hope that in wake of COVID, there will be more research and funding for postural orthostatic tachycardia syndrome (POTS) and autoimmune diseases. I recently read an article about Pamela Bishop, in which she shared her life with long COVID because she wanted to draw attention to the need for research and that those with long COVID are not alone. So many of her words struck a chord with me, most of which was “I want my (active) life back.” Damn it, so do I. #sickbutstillsassy
autoaylie 