serah[DOT]nu

Although I began having migraines after the birth of my second son (and in no way attribute them to my pregnancy with him or his birth in that I do not “blame him” for their advent… that just happened to be the period of my life that coincided with me starting to have them), I didn’t know that they were migraines for the longest time because I attempted to brush them off for as long as I could, medicating them with Ibuprofen at the maximal safe dose because that could be taken while I breastfed, and then aspirin and Ibuprofen in alternating doses when I was no longer breastfeeding until I came to the realization that NSAIDs lowered my spirometry because my asthma responded unfavorably to them. It was around that point that I finally brought up my concerns to my new primary care doctor, having had to find a new one because the one that I had been seeing for as long as I had been an adult no longer took my insurance. Since my migraine care was a bit tetchy with me also being an asthmatic, meaning that I could not safely take NSAIDs as evidenced by their alterations to my spirometry long being in my medical file and beta-blockers not being a choice for me due to the fact that my asthma was markedly more than “mild intermittent”, I was referred to a neurologist to take on and then oversee my migraine care, which I was completely fine with.

Although I would eventually start seeing another neurologist in the same practice once she went on maternity leave and then decided not to come back from it, we came to the determination that I had been — as I tended to do — understating both the frequency of my migraines and the severity of them, so we figured out how much I was actually in pain so that we could start to work to reduce my pain as much as was possible. Along the way with the first neurologist, an MRI was done so that we had a head scan of me on file, and although we “didn’t expect any surprises”, one came about in the form of a nearly one centimeter pituitary macroadenoma. Because of the frequency at which I need prednisone for my asthma, we’re currently “waiting and watching” my pituitary tumor (since that’s what it is, although more than 95% of these are benign), hoping that it doesn’t cause any unnecessary problems other than the fact that it’s a bit uncomfortably large in such an enclosed space. Discussions about whether or not I should apply for disability due to the frequency and severity at which I had migraines were had with my second neurologist, and he believed — and still believes — that I should apply for disability until I actually get it, acknowledging that it might be a bit of an uphill battle if Social Security wants to arbitrarily deny me with every flimsy excuse they can come up with. But he is, and has been, extremely supportive of me applying for disability, and he does acknowledge that my migraines — chronic and intractable — are a severe, disabling condition.

If my pituitary tumor is in any way influencing my migraines, conceding that me being as steroid-dependent as I am might make removal of it difficult, I may inquire at some point about radiation therapy, having seen my own mother go through whole-brain radiation therapy when she was alive and being treated for cancer. In my case, it would be localized to a much smaller area, the side effect profile would be slimmer, and it might be an alternative to removal that would reduce the frequency and severity of my migraine pain if this is in any way contributing. It might be something worth looking into as a possible palatable middle ground.

As a child, I fell through the cracks and did not get the diagnosis of childhood asthma that I should have gotten. My inability to keep up with my peers began to manifest itself in junior high school when I could not keep up with them running laps around the gym, and it didn’t seem like any of my gym teachers cared enough to notice. An attempt to join my high school’s cross-country and soccer teams were thwarted by the fact that I could not for the life of me keep up with my peers at all — I was the only student on the cross-country team that year who “could not get over the mental block” required to run the mile (and wished that my coach would have realized that it was not a mental block preventing me from running the mile, but asthma), and was frequently having asthmatic exacerbations while attempting to train for the soccer team that only went so far noticed by my soccer coach as to reduce what was actually expected of me on the field. My parents did not find out until more than a decade later, after I had been forced to drop out of both teams due to an inability to keep up due to undiagnosed childhood asthma, that when I was enrolled in gym class and my gym coach discovered the severity of my asthma he let me ride the bench the entire period to get the needed credits for gym and gave me an A without informing my parents that there was any concern at all about me not being able to participate with my peers. Literally no one reached out to my parents at all.

While my classmates did gym activities, I sat on the bleachers doing homework and was given As for gym.

I wasn’t formally diagnosed with asthma until I began seeing my own primary care physician as an adult, and she was flabbergasted that it had taken this long for anyone to even question that I had asthma given the frequency and severity of my symptoms as well as the limits that they imposed on my life. Because various maintenance medications did not have the desired effects and my asthma was still as prevalent as it was, especially exertionally, I was referred to a pulmonologist (and eventually had to change to a new primary care physician and pulmonogist over the years). Although I am comparatively in a bit of a better place with my asthma than I was years, even decades ago, I still resent the fact that I was never diagnosed with asthma as a child and that I could not participate in the activities that I wanted to participate in because the coaches that were supposed to be responsible for my well-being could not even reach out to my parents to let them know that there were impediments to me successfully being able to be a part of the teams that I wanted to be on. (And at that, my gym coach letting me ride the bench for multiple gym classes gets more and more absurd the more that I continue to think about it, especially as I continue to get older.)

All in all, I feel like several key adults that were in my life when I was a child dropped the ball and failed me.

Actually, for more than just this reason, I feel like key parts of my secondary school education failed me.

Maybe my asthma wouldn’t have snowballed into what it became if these adults at school had contacted my parents about my exertional struggles sooner, cluing my parents in to the realization that I needed assistance to participate in activities that I wanted to participate in, and I would be more fit for it today.

But all I can do, more than a decade after graduation from high school, is sadly wonder about that though…