Time has lost all meaning during the COVID pandemic, but it is January 2021, and that means it is my five year blogaversary. It’s been quite a ride. I don’t know what I expected when I started blogging, though I must admit, I never thought it’d be five years later and I’d still have little to no interaction on my blog. I guess I thought I’d be starting a dialogue, but it’s been five years and it’s still almost exclusively a monologue. Oh well. At least I’m practicing my writing skills?
A lot has happened in the past five years. Since I started this blog, I have had multiple medical procedures, multiple surgeries, and had to withdraw from grad school and from my research team for medical reasons. We also had to abandon our “forever” home for medical reasons, moving to a different climate and elevation. Never have I felt like such a failure.
But I also joined Twitter about a year-and-a-half ago and became part of the amazing online disabled community. I gradually transitioned to accepting my identity as chronically ill and disabled, and had the opportunity to participate in the empowering and enriching workshops presented by Crip Camp Virtual during the summer of 2020. Thanks to all the great, knowledgable folks on Twitter and at Crip Camp, I am now reading about the history of disability, about theoretical frameworks of disability, and about the experiences of other chronically ill/disabled people. Having a supportive community that understands my struggles has been invaluable, and I don’t know how I would have been able to endure COVID quarantine without them.
Due to the moral support of other chronically ill folks and their generosity in sharing information, I have finally received a diagnosis for one of my conditions, mast cell activation syndrome (MCAS). And other migraineurs helped me diagnose it when my migraines took a new, frightening turn, which also led to an official medical diagnosis for that as well – hemiplegic migraine. I’m still pursuing some other diagnoses – for example, I know I have connective tissue issues, but so far have not received adequate diagnosis or treatment for that.
I also learned, when we moved, that there is a significant amount of variability within the VA. Veterans do not receive the same level of care across VA facilities. And I learned that transferring between VA facilities is not a simple, straightforward process. My transfer, for example, even though I tried to proactively manage it and even used a care transfer manager, was a nightmare that resulted in me losing access to important medications for months (it would have been even longer, but I paid out of pocket to fly back to my previous facility for care I was being denied at my new location). Additionally, my gaining VA facility would not necessarily accept testing and diagnoses from my previous VA facility – some departments did, but others insisted that any diagnosis that was not from their facility was invalid, and that diagnostic procedures had to be repeated.
When I started this blog, I was fed-up with traditional Western medicine and open to exploring alternative medicine to see if I could find remedies for my symptoms. I now realize that this is a rather common part of the chronic illness experience – we want so badly to be cured, to be healed, to find a way to function without pain and suffering, to find an elixir that will make it possible for us to be more present for friends, family, careers, and ourselves. Some lucky individuals do find something that helps. Many of us do not, and come away from the experience sadder, wiser, and with less money and hope.
However, I have found some things that do work for me during the past five years. Heat and ice therapy are way more powerful than we typically give them credit for – they are a major part of my arsenal now. And physical therapy exercises/gentle stretches are very beneficial for most folks too. I can’t run anymore. I can’t play contact sports anymore. I can’t do a lot of the things I used to do. But gentle motion like Tai Chi is very beneficial, and will help counteract the progression of my connective tissue issues. I have a home NMES (neuromuscular electrical stimulation) device and a bunch of physical therapy devices: foam roller, Tiger Tail, exercise balls and bands, etc. These are non-medication things that help.
I have learned a great deal more about my conditions and how to manage them by avoiding environmental or dietary triggers.
Working with healthcare providers, I also have a medication regimen that helps mitigate my symptoms. I’m doing better than five years ago, when I mostly lay on the sofa all day.
I’m still a long way from where I’d like to be, and I don’t know whether those hopes are realistic anymore. But I can see progress from where I was when my health bottomed out. There is a tension most of us chronically ill/disabled negotiate, between wanting to find answers and solutions, and finding peace with what is. I am learning to live in the now, rather than merely existing while I fight to return to how I was. None of us is guaranteed a future, let alone the future we dreamed of. But, if we let it, chronic illness/disability can teach us how to live fully in the present, how to live as richly as circumstances permit.
Chronic illness/disability can teach us to eliminate the B.S. from our lives and focus our limited energy on the things that really matter to us. Which dovetails with my word of intention for 2021, Curate. Slowly, I am letting go of aspirations and aspirational belongings, striving to retain only the things that are useful/beautiful (à la William Morris). I am pruning away the dead and dying branches.
So there you have it: five years of blogging about health issues has seen my identity drastically change and my knowledge of chronic illnesses vastly expand. I’ve lost most of my abled friends, but I’ve made a lot of new, chronically ill/disabled friends, who are more supportive, knowledgeable, and understanding than my lost friends ever were. I’ve lost one dream/forever home, but gained another. The battle for diagnoses and treatment rages on. I haven’t been able to blog as frequently nor as eloquently as I used to – brain fog is a bitch. But the blog limps along, which is apt.
