So glad to be home. I spent way too much time today worried that I had inadvertently accumulated frostbite over a random rash that appeared and hold enough lived experience around missed information being relayed to patients about drugs/reactions with new medical conditions - along with a google search. Well, suddenly it became possible.
I hate how anxiety riddled I've become over this latest medical issue. I am not an anxious person. If anything? I'm way too confident and it gets me into so much trouble. It's been that way my entire life but after parenting two special needs kids I don't have fear anymore. At least not like how most people see/experience fear. In addition, I'm cursed with severe authority issues - which led me to chasing management/administrative positions when I was younger. As a writer, I loved diving into psychological warfare - for fun. Write what you know - the ever present advice given. Well...I may know too much.
People look at me, truly don't see how that's possible. One of the biggest issues I deal with in life - fighting bias. Even in this new medical diagnosis, I'm fighting bias that is impacting my medical care. I'm of a healthy weight, look much younger than my actual age (41), active - I'm also Hispanic and grew up in poverty. If I do not advocate for myself, breaking down bias at all times, my care and life could be cut short. I hate this kind of additional pressure on me. I deserve better but it's really all I know and why I've survived all this time. In our society, one of the most irritating things to me is that we do not value survivorship wisdom.
Yet within that scope - I'm not even seen as a survivor. The wounds I carry are invisible. People make assumptions. I've noticed over the years that seeing a wheelchair user or being around a nonverbal deaf blind child - is enough for people to get it severely wrong. Their own fear gets in the way of communication and connection.
Advocacy does feel like a war in my mind and it shouldn't be. The conditions that people have to endure in order to access medical care needs to be addressed.
One of the most disturbing thoughts running through my mind today -
if I didn't competently perform job expectations - despite being exhausted, ill and battling extreme weather conditions, I would lose my job and health insurance. I faced this kind of conundrum before, when contemplating divorce four years ago. Like many in that world bubble, he required a traditional lifestyle and that works for so many, just not me. Again, confidence put me on a different path than most.
On days like today, that confidence felt like a curse.
We've been in a frozen icy hell for weeks and trying to load/unload, push a wheelchair on ice during this time of heightened medical stress has made me want to continuously cry but tears don't work. Not only was it dangerous for my kids and their medical conditions but it's already so difficult to access most buildings on a bright sunny day. Life has been harsher than normal and that's an understatement.
This morning I woke up exhausted and with serious leg pain, felt like (doms - delayed onset muscle soreness) most likely from the work conditions yesterday because there was an increased physical demand but still not sure becasue there is so much I don't know about my own diagnosis. I received this notice on my phone:

School was cancelled and I still had to work. I was too concerned with rerouting the day for the kids. I did not even think of what frostbite is and how to avoid it. I was in busy mode. Oblivious. It was only later that afternoon that I realized how reckless I had been when the red marks appeared.

The rashes on my hands have since vanished this evening. Tonight, I'm grieving my own foolishness. Another lesson learned.
Once again, I was protected by what feels like a higher power.

It probably was not on the news anywhere but Kansas was devastated by an enormous blizzard and we've been in icy, additional snow storms and sub freezing conditions ever since. We barely get snow here in southern Kansas. Snow typically lasts a day or two - it's been on the ground for weeks.
It's finally forecasted to go above freezing tomorrow. Let's hope so.
Despite the rollercoaster of my day, I remain convinced that enhanced medical advocacy and clear concise information is needed for society. It was already my life mission but fairly strong on my mind tonight.
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