I may have followed you on my new tumblr if you liked my earlier post about that

if you want to follow, let me know. consider this a bit of an archive. see ya!

New Order Temptation '87 →

hello friends and comrades

I am thinking of switching to a less attached to my name kind of tumblr so I can read and post things but not necessarily have it be so attached to my identity ie i want to be more anonymous. please like or reply to this post if you’d like to follow me on that account pretty soon. 

• Me, an intellectual: crazy ex girlfriend is a show about deconstructing patriarchal narratives about women's happiness and exploring how that happiness can exist outside of men
• My heart, a piece of garbage: grebecca is endgame

I am vexed

Slowly but surely

A year (and like three days) ago last October, I ran my first 5K run in pain that I attributed to needing to train more or something wrong with me that was my fault or under my control or something; I didn’t talk about it at the time but I ran that race in tears.

In November, I kept pushing myself but by the time the election was over in the US, I was in pain every day, in my back, my hips, my hands, my ribs. Late nights took me longer to recover from. I went to a ladies beer show with my sister in law and friend, only to spend three days afterwards with my hands swollen and my joints screaming and the fatigue kicking my ass. It was my first month at a new job and I told myself I had to be overreacting, that I was stressed about Trump, that I had too much to drink.

I avoided drinking in December and threw myself into work and then resting during the holidays. I saw my GP because the month before made me paranoid I had something wrong with me and I told her I had a family history of arthritis. She knew me and I could be a worrier about things but she also ran bloodwork just to be safe and got me a referral to a rheumatologist. My hip was still aching daily.

In January, my GP and I thought I had appendicitis or an ovarian cyst because the referred pain from my SI joints was so bad that I felt it intensely in my groin, so intensely that I’d double over walking to the subway. Ultrasounds were clean, the reading said “perfectly healthy ovaries”, no appendicitis. My GP thought possible IBS or IBD. I asked for a second rheumatology referral, this time to Women’s College Hospital, as the first rheumatologist I was referred to had the rudest office staff I’ve ever dealt with.

I was still in pain in February. Someone I know suggested that perhaps I was sitting in a position that was causing me pain. I tried to adjust the way I felt. I woke up stiff every day and stayed that way for 2-3 hours. I realized that the fact that I was tired all the time wasn’t normal, that it wasn’t just funny that I slept for 13 hours and woke up exhausted, unrefreshed. I started going to therapy again.

March brought my first appointment with my rheumatologist Dr. Gakhal. I told her about my pain and she examined me. She said if I had to choose which areas of pain were worst, which would they be? I said my hands for sure and my hip. She asked about my lower back and I said that yes it hurt but that I’m also a big person with big boobs; of course my back hurt. She ordered tests and I got scheduled to begin having them. I liked her. I realize now that she already suspected I had ankylosing spondylitis.

April brought more bloodwork, 8-10 vials at a time. It brought xrays of my hands, my feet, my lower back and pelvis. The x-rays showed very little in my hands and feet but it showed sacroilitis which needed to be confirmed by MRI. I googled sacroilitis and it brought up the words ankylosing spondylitis for the first time. Ian thought he remembered a kid he went to school with having it but that it couldn’t be that because he was in really bad shape. I scheduled my MRI.

I had my MRI in May and learned that I am extremely claustrophobic. I had declined the sedative thinking that I would be fine only to be lying down on the table and fighting to stop the machine from pulling me inside. The nurses calmed me down and I let them put me partway in the machine. I didn’t move but I had a full blown panic attack during the procedure, frozen and unable to feel anything. I left the hospital and met my friend Ashley at Harvey’s where a hot dog took my mind off things.

June brought worsening joint pain, more fatigue, and a fullblown GI flare. Diarrhea, painful brutal diarrhea, nausea, blood in the stool. My GP got me a referral to a gastroenterologist and tested me for celiac while also letting me know that bloodwork for it wasn’t conclusive. My rheumatologist liked to cover her bases so she had my hands ultrasounded anyways. The ultrasound tech and I discussed being right handed vs left handed and which made you better at the arts and which made you better at science.

July brought being diagnosed with ankylosing spondylitis. It brought Vimovo with no pain relief but lots of nausea and then Meloxicam with the same. I became aware of my body in ways I hadn’t before, the pain, the ways I lived with chronic pain for years without realizing it or just thinking it was normal. I thought of how tattoos never seemed to hurt very much or how I could sit for hours because it seemed to hurt less than a normal day. It brought being aware of how much health is equated with moral virtue, how people don’t know how to talk about illness in any sense but especially when it’s incurable, it brought an anger and a fresh sense of being alive that only illness and pain can.

In August, I reached out and met my first friend with ankylosing spondylitis; I can’t tell you how much it helped to have someone who knew the shorthand and could just get it right away. I read everything I could get my hands on about my illness. I did daily exercises for my spine’s mobility; they were painful and I often ended up lying on the floor in tears. I met my gastroenterologist and she quickly decided with my family history (hi Crohn’s!) and already having a highly comorbid autoimmune illness, I should have a colonoscopy and endoscopy. During a routine eye exam, I learned I had uveitis, inflammation of the eye that is often seen in AS, and began taking steroids for that.

September brought a new medication that didn’t work (Celebrex), a very painful flare, and less mobility than I’ve ever had. I met with my rheumatology team who let me know what I already knew: I have a more severe case of AS than we had hoped for and my best bet was biologics. I agreed immediately because I had been reading about them and I knew I wanted to start them ASAP as I was getting worse and my stomach couldn’t handle the NSAIDS. September also brought the awareness that I walk with a bit of a limp due to the fusing of my SI joints. Most importantly, it brought the application process to begin taking Humira.

October brought insurance coverage approval. It brought looking into canes at 30 to help my mobility with my limp, to help keep me going and moving and living. It brought getting a laptop at work so I can work from home on days when I am in pain. Next week it’ll bring my colonoscopy and endoscopy and hopefully more GI answers. Yesterday it brought my first refrigerated box delivery of Humira and today it brings my first injection training and actual injection of a drug that will hopefully change my life. Despite all of this pain, if you told me a year ago i’d be about to inject myself myself with biologics and browsing canes online, I’d never have believed you but here I am. I am not in a rush anymore, I’m just hoping to slowly but surely be able to live my life the most I can. The world is uncertain and life is terrifying but it’s also so fucking beautiful sometimes.

how do you decide whether or not to have a kid?

how much does money play into that decision?

how much does chronic illness?

is it selfish to not want to be in more pain?

how do you decide in a vacuum which will never happen?

how do you determine what your quality of life will be like with or without kids?

how do you sort out whether you actually want a kid or you just feel vague societal pressure combined with FOMO on an experience?

how do you deal with the inevitable feeling of missing out on one choice because you chose another?

the word that keeps coming up in conjunction with ankylosing spondylitis is “insidious” like back pain that comes on slowly and without you realizing it and i’m honestly just not even sure if i remember what it’s like to not be in pain