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.

My great grandma

     I thought about talking about my great grandma Dee at her memorial, but realized I'd probably end up crying and flustered, and not say anything I meant to. I sound much less crazy when I have the chance to write things down away from others. In fact, writing is really how I got to know my great grandma, despite living nearly 6 hours away.

     In the late 90s and early 2000s, we had a family email address, and the first person I ever emailed was my great grandma Dee. We emailed regularly; she loved that I'd learned to sew very young, and was very happy I was taking piano and dance lessons. She told me how much she loved dancing, but especially music. She told me music runs in our family in the same serious way people tell family members that freckles or red hair do. I told her about kid stuff; school, friends, activities, but she always answered without condescension, as though we were two people on equal footing.

     Dee's always been almost a legend of the family to me, the head chieftain. The first time I remember actually meeting her, I couldn't have been more than 4 years old- if that. I was eating a banana, and went to throw away a bruised bit. "Hey-no! We can make it into banana bread. Save that!" She bagged it and put it into her freezer. Later, as we were leaving, she gave me a small fabric coin purse. That same little purse is in my bag, and there's at least 4 frozen, bruised bananas in my freezer.

     Aside from emails, we visited Dee every couple years, making the 6 hour drive for birthdays and other family events. The drive was always worth it when you got to Dee by the sea and looked out onto the beach with bright spots of people and glittering waves. My own sweet grammo would grab me, "Mom, you remember my granddaughter, Tuesday? Chris' girl?" One time she looked indignant, "Of course, I remember ALL my grandbabies!" 

     If she truly did remember everyone's names, it would be quite a feat- she had not just grandkids, but great-great grandkids, and various friends she adopted as family with their kids. I'm nearing 30 and can't name half of us on my own! Either way, her love was clear, and she usually had a circle of groupies waiting for a chance to chat.

      As a child, Dee seemed hugely imposing. She climbed under garden fences to tend plants, walked down the beach, and seemed very much in command of her world. It's only when I saw her as an adult that I realized how physically small she was; but like a bullet, she had no end of power and speed.

     When I got engaged, both Jax and I lost a lot of friends and family who couldn't deal with the idea of gay marriage. Each time we told an older person, or conservative person, I was waiting, terrified of being rejected again. When my grammo said she'd talked to her mom, I went cold. I truly didn't think I could handle her rejecting me. Luckily, I didn't have to find out. She made a colorful joke, and sent us a toaster oven. I cried. I'm crying now remembering it. She was born in 1917- Of all the people out there using the excuse that"they're a product of their time" we would've understood it with her the most. But she opened her heart and mind to us, and I will forever be thankful for that.

     There are a lot of things I regret: I wish I could've made the trip down there more, I wish I still had those emails from 20 years ago. But there are so many things I'm thankful for: memories, photos, and keepsakes both tangible (coin purse, hippy beads) and intangible (freezer bananas, multiple demin jackets.)

     When you live to be 101, you collect a lot of friends and family along the way. And through us all, she'll live on. When we wear our denim and think of her, hum a song she showed us, sew, play music, or indulge our hippy side. Or when we take a leap of faith, hold tight to our dreams and goals, and use our independent strength, we'll know she's stayed with us, where it matters.

One of Those Days

     Some days, I wake up and can immediately do crazy things like standing up and getting myself some caffeine. My pain is below a 5 on the infamous pain scale, and I'm in a fairly good mood. I get. Shit. Done. I feel like I've got life under control; I can totally finish school, go back to work, become one of those inspirational individuals who write uplifting memoirs with pictures of blue skies on the cover. I'll be the girl at the TED talk, talking about how she overcame her messed up body, stayed positive, and impacted the entire universe, while maintaining her stylish and attractive appearance (and how you can too!!)

     Other days, I wake up crying in pain. Usually if I've gotten any sleep, I was dreaming about being in pain. Jax helps me get and take the appropriate medicines, and I wallow in bitterness. I'm convinced I'll never again feel any better than I'm feeling. That the surgery and physical therapy didn't help and won't ever help. The list of things I've lost while my body has steadily declined circles round and round my mind, along with everything I've never accomplished.

     Lately it's been leaning heavily to the depressive side. It'd probably be smart to try to find a happy medium: to know that I won't accomplish the things I wanted to before. That my life is going to be different now, but I can learn to work within these new limitations as figure out new goals. Unfortunately, my brain doesn't seem to function entirely on logic.

     

Sliver Linings in the Storm

     If you've been around the internet, you've read more than a few pieces complaining about the world. It's understandable, especially in the chronic illness/disabled/spoonie communities.  Being in pain, sick, and often at the mercy of jaded health professionals, will wipe the smile right off your sick face.  It's easy to wallow in the suckiness of it all.  I've certainly been in that pit of despair a lot lately; thinking about all the doctors and nurses who treated me as less than human. That after four years, I'm still in crippling pain.  This in turn exacerbates my mental illnesses, and I end up wrapped in a depression-cocoon of blankets and carefully placed pillows, alternately crying and trying not to have panic attacks.

     I'm super fun, really...

     Anyway, after doing a freelance gig today, I started thinking about what my old therapist used to make me do.  10 years ago I had a brief go at therapy, and one of the handy tools she offered me was to write down something that made me happy at the end of the day. I'd journal, then list 3 things that were good that day, or that brought me joy. Even dark clouds have silver linings, and all that happy horse shit.  I wondered if I could think of any happy or good things in this journey to fix my broken body, and surprisingly, more and more kept popping up.

So here, in no particular order, are the health care professionals who deserve gold stars and a baskets of kittens:

1. The fellow LGBT nurse who let me know I wasn't alone:

      One of my first ER trips, Jax (my spouse now, then we were just dating) took me to the closest hospital, which happened to be very catholic.  I was in a room with a few nurses and Jax, and the nurses were asking awkward questions

"Are you sexually active?" "What kind of birth control are you on?" "Is there any way you could be pregnant?" 

Normal questions really, but I had to explain at the catholic hospital that I wasn't on birth control, was sexually active, and there was no possible way I could be pregnant, because neither of us has sperm.  Seeing me blushing and worrying about being judged, a nurse came up beside me, smiled, and said, "I'm sorry we have to ask those questions. Don't you worry honey, you've got family here."  Then he winked at me.
I had been in pain and scared of judgment. Thank you, fellow LGBT nurse, for giving me comfort when life was extra sucky.  You made me smile, and feel less alone.

2.   Dr. P And Snoop Dogg Nurse:

(This is the closest thing to Snoop and a doctor I can get lol)


     It was another year, and another ER trip.  For some reason, a student was practicing IV insertion on me. Note: my veins are deep, small, and they twist. After 3 tries, the teacher takes over for the student. It's a no go. Finally, Snoop Dogg Nurse comes in. He's the most calm, chill, helpful nurse out there. Gets the IV in like it's nothing, and talks calmly to us, letting his aura of chill vibes calm us down too.  An absolute delight of a human being.  Then Dr. P comes in, and (though we didn't know it then) he immediately correctly diagnosed me. He told me he was positive it was my back, and that he'd sent a note to my doctor. A year or so later, he was proved correct.  The whole time he talked with me with kindness and gave me all sorts of information on how to make my doctors listen to me.  Dr. P, thanks for giving me hope that I'd finally be diagnosed.

3.  My post-surgery nurses:

I wish I could remember specific names, but my time in the hospital after my laminectomy and fusion is a haze of medication and pain.  There were 3 or 4 nurses who were just amazing to me though.  Thanks especially to Kelly (and thanks Jax for remembering her name!)  Kelly sat with me as I cried, saying I wished I'd never gotten the surgery; that the pain was so bad I wanted to kill myself. She told me that she knew the pain was bad, but it was going to get better. She told me about her sister, who had the same surgery, and was now doing so much better. She told me to keep holding on, because there was a light at the end of this tunnel.  She made me laugh, even as I was in so much pain my body shook. She took pictures of my stitches with my phone, so I could see it, and was wonderfully human at a time when I felt like a lab rat.

(The day after surgery, featuring the wonderful Nurse Kelly's hand/manicure)

Mark was another nurse during post surgery who went absolutely above and beyond.  He was the night shift nurse, but was never far when I needed help. When I fainted due to a bad med combo (0/10, do not recommend), he realized quickly enough to catch me and get me back into bed before I fell and messed my back up even more.  He even made me laugh when I was super uncomfortable and embarrassed with a blocked catheter.  I could honestly go on all day about the nurses I had post back surgery, so many amazing people.


     I could go on, but I ought to save some for the next time I'm in my depression cocoon.  It's so easy to get caught up in the constant pain and trouble of dealing with doctor after doctor and appointment after appointment.  Pain grates on you over time, you can never truly get used to it. Having people in health care who actually give a shit is such a huge gift.  It's so easy to become jaded anytime you work with the general public, and when the general public is grumpy and sick, I'm sure it's even worse.  But I certainly know that being able to interact with those few wonderful humans who retained their humanity has actually changed my life.  When you're scared, in pain, and helpless but for the nurses around you, knowing that nurse is a kind person who actually wants to help makes all the difference.

  I may have had more than my fair share of pain and health care bullshit, but I've also had the gift of meeting some truly rad people.  To the doctors and nurses out there who have kept their humanness, who treat their patients like people, not diseases, who keep a sense of humor, and reach out to others, Thank You.  You're the real MVPs.

What are your 3 good/happy things?  

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. 

"Writing About It"

   

     A huge, full moon is shining on the window of the 12'X12' room I share with Jax- who is snoring gently about a foot away from me. In the other bedroom, my dad and step mom are asleep. Sprinkled elsewhere about the trailer, the two cats are sleeping, probably. 

     I'm the only one awake, and to be honest, I'm pretty salty about it. I didn't get much sleep last right for the same reason I'm awake right now: PAIN. All capitals absolutey necessary. It's been not yet two months post surgery, and while the pain is much improved from the first two weeks, when I begged Jax to kill me, it's still bad enough that I occasionally still need help getting out of bed and to the bathroom. And let me just tell you, there's nothing as confidence-boosting and sexy as having to ask your spouse (in sickness and in health, mofo!) to help you pee like you're a toddler. Super fun.

     Nearly four years ago now, before my body decided to just say "fuck it" and fall apart, I would have laughed at the idea that I'd ever let Jax help me with the most basic and embarrassing of tasks. I still had things like pride and independence. Now I've watched myself go from dancing en pointe, to using a walker. I can't afford to be too vain or too proud for help. I wear my ugly back brace, use the walker, the cane, let someone hold my arm to steady me, whatever I must.

     And apparently, after a million repetitions, I listen to my spouse and friends when they tell me (again and again) "You should really write about this, Tuesday!" Why would I want to write about the pain in the ass (sometimes literally) situations the past four years have put me through? It seems....potentially upsetting.

     At the same time, I don't have anything else going for me right now. I had to drop out half way through the semester to get back surgery. I spend much more time stuck in bed trying to distract myself from pain. Lost my job a couple years ago. Aside from piddling uselessly around the internet, or reading until my eyes burn, what else am I gonna do?

     Apparently, I'm gonna dredge up this whole messed up spine journey. Are you happy Jax?! Z?! (They probably actually are...they're supportive like that.)