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.)