Let me assure you, this is not a joke.
Here has been my final quarter – Oct/Nov: unnown wrist tendon ailment that requires an as of yet to be scheduled electrical impule nerve test delayed by other injuries and snow. The main day to day impact is that I wear an awkward splint that throws off my balance and causes me to flail about knocking stuff over and unintentionally smacking cats from their mid-winter slumber. The other significant issue is the loss of fine motor skills in my right hand – like grasping a pencil and/or writing. Note that I’ve been typing more often because I don’t feel the pain due to other injuries. However, I’m not moving my fingers so much as moving my wrist and smacking the keyboard with them. Does that make sense?
In December, I “threw out my back” which was quite unpleasant. On Day 2 of that magical mid-life journey, I miscalculated when I was sliding into bed and smacked my head off the metal head board. (Note: I couldn’t recall that word and had to ask Laura.) So by Day 3 (Fri Dec 21) I was a mess of pains and aches all of which layered together to create a miserable me and masked the serious symptoms.
I can tell you that things hurt, but I can also tell you that something is amiss. It isn’t a headache – something is wrong. I can tell I can have unexplained mood swings that have nothing to do with my mental illness. I am very very sleepy (sleeping 12-20 hours a day in intervals.) But other things, I can only recount for you – I don’t know I’m doing them. For example, I mix up my words – I’ve begun to pick up on this by the expression on other people’s faces. I seem to get very confused by the concept of ordering a glass of water with no lemon. So I say it very consciously and carefully, and I look to Ledcat to make sure I’m saying it right. I’ve also begun repeating myself. I don’t know it. Laura very carefully explained to me what I was doing – she doesn’t call me out on it at all, she has the same conversation with me and then calmly explains what happened. I get words confused and people, too. Not all of the time, but its to the point that I’m anxious about social interactions.
I feel vulnerable and unprepared. I have intense headaches and can only take Tylenol. I have no appetite. I could not function without my phone – I look up words surrpetitiously using dictionary.com when I can tell I’m wrong. I show pictures to deflect conversation. I even type out sentences to make sure the words are correct. But because of my fine motor issues – its a challenge. I tried to use my iPod to listen to podcasts and audiobooks. Disaster. I can’t swipe at all. I couldn’t comprehend the instructions on how to download a podcast. I’m pretty sure I deleted a lot of crap. And somehow ended up paying for 3 copies of Sherlock Holmes. Not good. I also had to disconnect my medication and ADL timers because my finger fumbles – so that’s not helping me now when I truly forget what day it is much less what med I should be taking. (Don’t suggest a pill box – fine motor skills an all)
So I mentioned that I was referred to the Concussion Clinic at UPMC. Man, was I bummed when they told me it would take over three weeks for a consultation/evaluation. What? This was not good news after getting three different sets of instructions for the two doctors who saw me at the Presby ER. Can I drive? Can I go to see a calm movie? What can I do?
I turned to my old friend – the Internet. All I found was much more conflicting advice and a lot of dire warnings about the impact of concussions (really Traumatic Brain Injuries) on youth, athletes and seniors. Scary stuff. Not much for middle aged ladies.
I see my PCP tomorrow, but I suspect that it won’t be terribly productive. I mean – what can he tell me? The CT scan showed no bleeding on the brain or serious impact trauma. That probably hasn’t changed. Maybe he can give me more concrete suggestions based on my symptoms.
What does this have to do with being a lesbian? Well, here are the ways it comes up
- I’m on Laura’s health insurance so even while wincing in pain under a bright light, I have to help admin staff figure out how to list her as my domestic partner.
- Laura does not have POA so we have to keep my Dad in the loop just in case – not a big deal, but still.
- When the ER doors close behind me, I feel a twinge of fear knowing that there is nothing legally that can bring her through those doors. Even with POA. Sure she could call an attorney and raise hell, but I wouldn’t even know she was doing it. We depend solely on the good will of UPMC, et al.
- We have to talk about things like FMLA – if I were very ill or if I had to have surgery (most likely carpal tunnel surgery) FMLA would NOT apply and she could not use it to take off to take care of me. Did you know that?
- I would be lost without her. I look in her eyes when I make a mistake with language and I feel okay – she’ll cover for me and she’ll help explain it to me. But while comforting, it is also sad to feel like a burden.
Concussions are a terribly misunderstood trauma and good for athletic departments starting to draw attention. 1.7 million people sustain a concussion each year.
So I – to put in gayly – am a hot mess. I’m struggling to decrease my screen time when screen time gives me access to knowledge and information – the comforts I need. I’m trying to determine the best treatments, the possible adaptive devices, etc. I’ve determined that a tablet (like a Nexus) is probably the best thing for me – I coud manage the apps like med minders much more nimbly. I might more easily get back into sleeping/eating properly both of which would be immensely helpful. I could look up words. But Santa didn’t bring a tablet. So do I pitch it as durable medical equipment – knowing that we are unfairly paying more for our health insurance anyway. Can I write a coherent explanation? Umm, no.
Is this TMI? (As opposed to TBI?) — eh, I’m not concerned. It is helpful to have documentation to refer back to when the occasion warrants. It reminds me to wear the wrist splint and stop pushing through minor pain because its not so bad.
Be careful with your brain. I wince when I read about sledding. Yikes.
Also, get your paperwork in order. Know your rights – many medical offices do allow same sex partners even if there is no legal requirement to do so. Don’t obfuscate your relationship – you aren’t married in PA and there’s no need to argue about it when you are facing a medical crisis. We are domestic partners because we are legally registered in the City of Pittsburgh, but that’s probably splitting hairs. Document symptoms. Try to rationally work through the interconnectitivy – my head didn’t hurt so much at first because my back was incredibly painful. So I ignored hand pain altogether which I’m paying for. Not good.
Make sure your partner knows your medications and the prescribing doctor’s contact info as well as official diagnosis.
And if the Secretary of State is hospitalized with a life threatening condition similar to yours – turn off the news!
So this is quasi-journal, quasi-reminder that we always have to think about being second class citizens in our nation – even in health crisis – and a quasi-reminder that concussion are serious m-effers.
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