Monday, July 13, 2015

Happy half-anniversary! Six months, baby!

Normally "monthi-versaries" are the thing celebrated by elated young couples still buzzing about in the intoxicating haze of new love. "One month today, baby!" "Three months today and only getting better!" new love is my new body and my new life. So, happy half-anniversary/six-monthiversary, baby!

Six months ago, I did what I now see as a bit insane--I got on a plane with my husband, flew 3000 miles from one coastal shore to another, and entrusted a man I'd never met in person to cut into my skull and remove portions of my brain. I acted on this with the deep belief the herniated brain tonsils were behind a huge amount of my symptoms and the reason they were becoming more severe, despite the repeated chorus of "this is not your issue" from five neurosurgeons and two neurologists in the Los Angeles area over a 10 month period. I respectfully listened, but my nagging instincts disagreed. To quote Robin Williams's character in Awakenings: "I'm sorry, but if you were right, I'd agree with you."

Six months today.  Holy crap. It feels like a lifetime ago.

I suppose, in a way, it was. Although, the life I was leading before then feels like another lifetime away as well. Hmm.  Perhaps I'm part feline, as it seems I'm already on my third life.

I went for my six-month follow-up with my primary care physician today, and it was amazing. It seems hyperbolic to say such a thing about a simple follow-up, but it was. In case I haven't made this abundantly clear in my other blog posts, I adore my PCP. She listens and takes care of me with a perfect balance of being attuned to what I am saying as well as what my body is telling her, and is open to discussing my case with me rather than talking at me about it. She has seen my story arc over the last two years, from the follow up from the ER visit in May 2013 where she sunk down and looked at me eye-to-eye and said, "I know something is wrong with you, because you are here. You never come in. And we are going to find out what's wrong."

And she has. For two years, she has. She has seen my slow decline, my mental health slipping with my physical. She was protective when I said I was going to New York, but understood what I explained about my process enough to support me (and if she thought I was out to lunch, I know she would have made it crystal clear, heh). She did my pre-op exam and noted my neurological abnormalities and wished me well, letting me know she was there if I needed anything on my return. At my two week post op visit, she removed my stitches and complimented the healing scar while cautioning me not to overdo it (who, ME?) because YES, YOU.

That was it. I have had zero contact with her for almost six months. No skull-crushing headaches resulting in me calling begging for help with the inescapable pain and nausea. No referrals to MRIs/neurologists/neurosurgeons/rheumatologists/whatever-ologists. No blood tests, spinal taps, repeat tests, going over results, more tests. After a cacophonous two years, six months of medical silence.

I came back today (you know, 'cause I kinda had to), and she said what every single person who hasn't seen me in months has said: I'm brighter. I'm alive. Everything about how I carry and present myself is different, My mom said the light is back on behind my eyes. I'm me. Heck, I've even had people tell me my tone in my Facebook posts has changed.

She was astounded to hear my pressure headaches are gone. Just...vanished. Oh, I still get headaches--normal people do get them, after all--but I'm still surprised how every time I can take something simple, like a Sudafed for my sinuses yesterday, and the cute widdle headache just goes away. She also was taken aback by the absence of my previously-constantly-present hand tremors. Just...vanished. I was almost giddy to show her how I can hold my hands out and they don't vibrate anymore.

Examining me was more like playing with a new toy. "Ooh, what can it do? Let's see!" She was thrilled (in her professional way, heh, she's the sincere-but-stoic type) to see my reflexes are improved. (I was amused when she checked my knees, she moved over to the side--in the past my hyperreflexia on my right side meant you definitely wanted to be out of the way of the response.) I was still a little hyperreflexive in my right leg when the knee was tapped, but not as crazy overreactive, and my left arm when tapped at the elbow is also a bit overreactive, but not punchy-overreactive. She also said that before, my hands and feet who vibrate (well, it was some other medical term) after the reflex test--again, showing hyperreflexia--but this time, despite the mild overreactions, there was none. Woot. All of my responses (she had me do things like puff out my cheeks and stick my tongue out at her, ha!) are symmetrical, so that's a big bottle of awesome sauce.

I was a bit bummed my Romberg test is still positive. This is where I stand with my feet together, hands to the side, and close my eyes. My poor brain can't find where I am in space and I start to fall. She said wobbling is normal, but falling--to me it feels like someone has grabbed my shirt and is slowly pulling me backwards--is an absolutely abnormal response. Ah well. I shrugged and said, hey, I can live with that.

And that's just it. I do have scads of neurological leftovers due to nerve damage from the longterm compression that I can live with because they can be lived through. My lower right leg is still numb to temperature; I still get the feeling my right leg and up to my hip are sitting in cold water (more than a few times, it's fooled me into checking my clothes for wet spots); I still have exercise intolerance and spasticity; I still get wobbly with exertion; I still am heat intolerant (and if anything, am worse than before); I still get sudden "You sleep NOW" drained fatigue (but thus far it's a fraction of the severity it was before); I still confuse words and sometimes physically struggle to untangle them in my mouth; the body aches still rage from time to time; I still can get easily sensory overloaded to multiple inputs; my eyes still get a little wonky; blah blah blah symptoms blah. But all of those, again, can be lived with and lived through. They're annoying. But I can live life.

My PCP said as we ended the appointment, "You absolutely made the right call going out to New York." Then she reiterated, "You absolutely made the right decision." That affirmation meant, means, the absolute world to me--and it's true.

At this point at least, I can't ride horses and for now shouldn't even be handling a 1000lb animal, but...I can drive a 225lb miniature horse.

I can't teach, but I can take my kids to school, pick them up, help them with homework, and even do a volunteer lesson in their classroom now and then.

I can't have a exhilarating ride or workout, but even on my worst days I can walk the dog.

I can read to my boys at night. I can bake and do crafts with them. I can do more in the house. I can run errands and not come home exhausted. (I can shop!) I can care for our snakes and monitor the incubating eggs. I can be home and take care of the boys when they're home sick from school. I can help my husband grade. I can, for the first time in over a year, drive myself the hour-plus it takes to go to my mom's.

I can go to car shows, theme parks, zoos, museums, parks, renting a scooter if need be but still going, and enjoying it, not just slogging through it.

I can watch movies on the couch with my husband.

I can go out for coffee.

I can live life, and I absolutely love it.

Happy six-monthiversary, babe.