The Spinal Tap

The last of the diagnostic tests

November and December have zipped by me, nearly without my knowledge. How did I wake up one day and find myself mere weeks from Christmas? My mental calendar had me convinced that by the time the snow started, I’d be well on my way to recovery. I was supposed to have built up some savings for the new year, and not only have my medical debts settled, but some credit cards as well. And yet, I found myself in the exact same spot. Physically, I was still in my spot on my couch, unable to stay awake for an entire day, and still experiencing seizures, chronic pain, and physical uncontrollable tics daily. Emotionally, I was still as stunted as I was in August, when all of this started. I felt as though I was starting to accept my new reality, but really, I had changed very little. I was still wading in the same nightmare I had been so sure I’d be well on my way out of.

Like so many others, Christmas has always been my favorite time of year. Christmas, for me, is a mental benchmark. One of my only comforts of the passing of this Christmas is realizing that at least, my housing situation is much more stable than it was this time last year.

Meanwhile, I had been trying to obtain a referral for a spinal tap. Months ago, my rheumatologist had recommended one, but he himself was not able to write the referral. The referral ended up getting passed around to all of my doctors, and seemingly stopped somewhere. I sent messages to my doctors, left voicemails, and was left with no answers on how to get this damn test done. Which, if I’m being honest, I was not super excited for in the first place. The idea of a needle in my back, while still suffering from a movement disorder, just didn’t sit well, unless it was vitally necessary. And of course, it was. Finally, with the help of my new care coordinator, I managed to get the procedure scheduled. For December 23.

One thing that I did not want to do before this procedure, was to read about it, watch videos of it, or anything of the sort. Understandable, considering my anxiety that had been building for weeks? Probably. But also, deeply irresponsible? Yes. If I had done any sort of research, I would have learned that this test would put me out of commission for two days, having to stay reclined and gulping fluids so that my brain wouldn’t dry out. Despite the urgency of this test for diagnostic reasons (the purpose was to find out if I have Lupus, or a neurological type of Lyme disease) I would have waited to have it done in early January, rather than days before Christmas.

The procedure itself was not one I’d like to repeat. It was painful, much more so than I expected. The numbing agent only numbed a certain way “down” so once the lumbar puncture needle was inserted, I could feel it probing around in my deep lower back. Not once, but twice, I felt extremely painful and strange sensations in my legs, even the right leg. The first time, I could have sworn my legs had been burned with hot coals. The technician calmly informed me that she had hit bone. The second time, it felt like the hamstring in my left leg had been plucked from my skin and stretched beyond its physical limits. Again, she hit bone. The procedure itself was promised to be fifteen minutes long but lasted nearly an hour. When it was finally over, I was to be under observation for two hours.

When I was allowed to leave, the technician and nurses told me I’d need to stay reclined as much as possible for the next 48 hours, drink as much liquid and caffeine as I could tolerate, and not lift anything over five pounds. Which is to say, lift nothing at all.

I did my best to enjoy the holiday season. There were some hiccups. But ultimately, my brother and my best friend made sure I got to have as normal of a holiday as possible. I saw it, I appreciate it, and I know they both feel my appreciation, and my love. While I did spend much of this week feeling excruciatingly and shamelessly sorry for myself, they allowed me to process the strangeness of this year on my own, no judgements passed. Once I finished feeling weak and unequal, I joined in with the festivities as much as I could.

While this medical mystery has obviously changed me in so many ways. Some good changes, some not so good. I’ve become more tolerant and patient.  I’ve learned, as all of us do at some point in our lives, that my youthful stamp of good health would not last forever. I’ve had to change my mindset about wellness, and I do believe that a lot of these changes will stick. I’ve become aware of so many awful ableist practices that infiltrate our society everywhere, from public buildings to residential design, to accessible and safe access to necessary services. I’ve been to a government building, whose purpose is to determine whether or not someone is disabled, that had such poor accessibility, my partner and I could barely get inside the building. I’ve become a more resourceful person, and a more creative person.

I’ve also become bitter and lash out at my loved ones more than I’d like to admit. I’ve become obsessed with money, like never before. I’ve never been in good financial shape in my entire life, but now, with far less of a safety net, and all of my resources exhausted, I am barely scraping by.

I’m still learning about this, and I’m doing my best. I hate that I cannot be a perfect friend, a perfect partner, a perfect sister. I can’t be perfect. Progress has been made. I am taking more responsibility for my situation and trying my best to be a cooperative and motivated patient. I know I still have learning and growing to do. Hopefully, the next time I find myself stuck, I can look back and see much more progress.

As always, I am in continuous need of financial help. Any donations, or shares, of my fundraiser are always deeply appreciated. Truly, with all of my heart. https://gofund.me/3f37b4fe

I wish anyone reading this, the merriest of holidays and a safe and happy new year.