One Year Follow Up

     

     November 8th will be one year since my back surgery, but I had my "one year" appointment with the surgeon on October 22nd, as he had to change his surgery schedule. As per usual, I made the 30 minute drive to the spine center, then waited to be seen for 50 minutes, only to talk to the actual doctor for 10 minutes. I'd been stressing over this appointment for weeks. In the waiting room, an older lady sat with the "So You're Getting Back Surgery" booklet they give out at this office. She was fidgety, and at least as nervous as me.

  "Have you been coming here long?" She finally spit out to me, "Do you like the doctors here?"

I set down what I was reading, and reassured her that this was a great office, and that even though the surgeon is young, he's very capable and knowledgeable. But she still looked so nervous, and I completely understood.

"My surgery was a year ago come November. I had a fusion and laminectomy, do you have any questions?"

She perked up, "Really? I'm supposed to get a fusion too, you don't mind?"

"Sure, wanna see my scar?"

"Yeah!"

     So I showed a complete stranger my surgery scar, and she asked me a slew of questions about my surgery. By the end, she was much more relaxed, and even laughed while telling me about her kids (3 grown sons in the army; they'll take turns helping her after her surgery.) By the time they called me back to an examination room, she'd thanked me no less than 3 times, and we wished each other luck. Never got each other's names though, now that I'm thinking about it.

     The exam room was less fun, because despite doctors telling me not to sit for long periods of time, just this month I've had 2 doctor's appointments where I waited in rooms with only chairs, for well over 30 minutes. You'd think they'd at least have a place to lie at the spine center, but you'd be wrong.

  Finally the surgeon came in. "So, one year! How are you doing?"

I didn't want to be a jerk, but I also didn't want to lie. So I told the truth: my vertebra no longer slips and slides and pinches, and I've gained a lot of stability and strength. But....I'm still in a lot of pain. I've got nerve pain down my legs still, which we were hoping would be resolved. I still use a cane, because even with some stability returning, I'm not very sure on my feet, and definitely can't walk without it for very long. Essentially, I don't have much of a life, because I have to constantly work around my spine's best efforts to crush me and my life to oblivion. (I mean, I didn't word it quite like that.)

  He nodded as he listened, and I finally got the question out that I'd been stressing over all week,

"Is this as good as it's going to get? Is there anything I can do? Cause I don't have a great quality of life right now."

He actually sat down (he'd been looming over me up to this point) and explained more. My xrays are perfect, but basically since the surgery I've "been healing excruciatingly slowly." I concurred. He went on to say that I hadn't really even made much progress in my healing until I hit the 6 month post surgery mark(??!!)

  He basically said that I have to continue to be patient, because I am making progress healing- it's just going a LOT slower than the average person. Why? He literally shrugged, "people heal differently." He also told me I'm allowed to exercise (using physical therapy approved exercises) daily, and that may help me heal slightly faster than molasses in January. As for the nerve pain, it's 50/50 or whether it'll heal, or just be permanently damaged.

  So on one hand, I'm glad there's a possibility for improvement. I was very nervous that this was going to be the best I could hope for, and it's not ideal. On the other hand, I've been trying to be patient about my body falling apart for 4 years now, and being told that I have to be patient another year is not great to hear. So here we go again, another loop around the sun. Another year to fight my body back on who's in charge here. If nothing else, I helped one woman in the waiting room feel better. So I've got that going for me, which is nice.

Thanks, Dr. A

     I've tried to start this post at least four times over the past couple weeks. A letter came from my doctor's office a while ago, which generally isn't great news. But I definitely didn't expect to open it and read that my GP had died. It went on to explain that I'd need to sort out a new doctor with my insurance as soon as possible, and gave me a number to call with any questions. The fact that the letter was written on her letterhead added to the surrealness of the moment.

     Dr. A was my doctor starting in 2015. I'd been hurt for over a year at this point, and was frustrated as hell. I'd been treated like a drug seeker, a hysterical little girl- like less than a person at some of the clinics and hospitals I'd had to go to. After my first (incorrect) diagnosis and laparoscopic surgery, health care workers treated me as though it were somehow my fault the first diagnosis was wrong. 

     Going to Dr. A's office, I had little hope. That's why it shocked me to tears when she responded to my explanation of what was going on with my health.

"But what were those doctors doing? Why weren't they helping you?"

     She looked incredulous when I explained that since I didn't have a diagnosis, my former clinic refused to treat any of my symptoms. She talked to me with compassion and empathy, and treated me like a human being, which was so rare from health professionals at this point that I embarrassingly started crying. She ordered an MRI, and got me prescriptions to help some of my worse symptoms. She talked to me about my life and mental health.

     In the next couple years, Dr. A got me diagnosed and on the road to surgery.  I learned that she spent her vacations doing free heart surgeries in the Philippines, through a program she founded. But most impressively, she worked in medicine without becoming jaded. She treated her patients like human beings, and remembered to ask about our lives outside of our sometimes treacherous bodies.

     A couple months ago, the office told us she'd had a stroke and was taking some time off to recuperate. They had a couple of rotating substitute doctors filling in, and I suppose I just assumed she'd be back any day. I just wish I would have thanked her. 

     So thanks, Dr. A. For your compassion. For talking to me, rather than at me. For taking my pain seriously, and not brushing me off as some faker. For getting me diagnosed. For always asking what I was doing to distract myself from the sickness and pain. For the work did, from here to the Philippines, helping people. For never losing your empathy in a vocation that can so easily wear it down, I will always be thankful to you.

The beginning

 

   On the 18th, it will be exactly four years since this medical debacle started. Such a precise date feels really strange, especially considering I never had a dramatic injury or fall or anything. I just came home from work one night, and was hit with a deep, intense pain in my lower right pelvis. Kind of by my hip bone. Figuring it would go away once I curled up and rested, I wasn't too worried.

     However, after a few hours in bed with the cat, it was still steadily hurting me. Since the pain was on the appendix side of my body, and it was pretty late in the evening, Jax insisted we take a trip to the ER. After blood tests (I have the crappiest veins ever, so I got poked 4 times), urine tests, and being asked a million times about the possibility of pregnancy or STDs, they brought out the big guns.

"The contrast is going to make you feel like  you're peeing your pants. Don't worry- you won't really!"

The CT scan was quick, and the contrast really does make you feel like you're peeing all over the CT machine. The forewarning was much appreciated.

"I'm sorry, I have to ask you this: are you a virgin?"

"Uhhhhhh....no.."

"I'm sorry, it's just an invasive test, and we have to ask if you've had penetrative intercourse before."

     The joys of Catholic hospitals. To this day I wonder what exactly they would have done if I'd said I was a virgin. Would they just not give me the diagnostic test I needed to protect my oh so precious virtue?

     At any rate, the trans-vaginal ultrasound was not the most pleasant thing, but showed that the cysts on my ovaries were too small to be causing my pain. In fact, all the tests said I was pretty much fine. Except, you know, the crippling pain.

     Eventually they gave me some IV medication, and told me to return if I didn't improve, or got worse. Exhausted, and in my case covered in needle holes, Jax drive through McDonald's (we hadn't really eaten after I'd returned from work) and went home, trying not to wake our roommate as we stumbled in.

     Four years later, the differences in my life are striking. When all this started, I had a job, we had an apartment, a cat, were newly engaged, had savings, still danced or did Pilates whenever I could...

     Now I've lost the job, then the apartment. Our poor sweet kitty passed away. I'm in medical debt, and can barely walk straight, let alone dance. We did get married, which was lovely. That night- which feels like a lifetime ago now- I had no idea that after that day, I would be in constant pain from then on. That was the last day I had moments without pain. I kind of wish I'd appreciated it more.