Thrown Upside Down and Thrown About Twice
Last updated: May 2023
I sit here thinking as I’m about to put pen to paper so to speak. It’s hard to believe I was diagnosed over 35 years ago.
I stop shaking my head and think how much has changed, how many support options are now available. I had no clue juvenile arthritis was a thing. Let alone what psoriatic arthritis was!
Finding a rheumatologist
God, to think I was 14 and it was late September. I can still remember the sheer agony when trying to walk, but I was off to my family doctor. I was still seeing my childhood doctor, my mother immediately had me change to her family doctor. At blinding speed (or so I thought at that age) I was off to see a rheumatologist!
Little did I know I needed one, the number of x-rays, bone scans, ultrasounds, and MRIs I had done between 14 and 19 I was sure I should glow for life! There really wasn’t anyone I could vent or talk to, nobody that I knew at the time that could relate. I was in this weird place of trying to vent to friends, but in reality, knowing they’d never be able to relate. Never able to truly understand.
AS is isolating
I tried my best to muddle through those years venting to friends as best I could, writing in journals. Like anyone that age in hindsight without the internet it felt so isolating. There wasn’t anyone I knew that could truly relate.
I did my best and made it to remission, I went through the dark days not having the greatest support. Pain leaving me trapped in my body. Thankfully I hit remission for the most part by 20 or so I was told this was the “honeymoon phase” this would come to an abrupt halt and when it does I need to let my doctor know immediately.
Finially diagnosed with AS
Life goes through its normal ups and downs. I moved to our nation's capital and end up back in my hometown to help the family in my mid 30’s. Pain has always been there, it’s never ever gone away. There have been pain spikes leaving begging for mercy but they pass quickly.
That is until 2018 my world got turned upside down when I found out my juvenile arthritis was no longer in remission, as a fun bonus side it was no longer classified as psoriatic arthritis. I have a rare version called ankylosing spondylitis!
I know, right, sounds like I just found a dinosaur, not the case it’s a rare version of Arthritis that attacks the spinal cord and autoimmune disease to boot! Talk about winning the genetic lottery! Yay!!!
The doc told me to stop working
Like most stubborn Canadians, I wasn’t going to let this stop me, right? Wrong - I fought as hard as I could for three years trying to not be listed as disabled or to admit to having a disability.
March 2021 rolls around and I’m ordered by doctors to stop working, the stress is doing too much damage. My pain is out of control, my immune system is adapting to medications meant to keep my body in check.
Finding a support group
Now, admitting I have a disability like anyone was a tough pill to swallow. It’s been even more mentally exhausting thinking here we go again. For the most part, the support groups I had found up until this group...well, they weren’t supportive when your self-diagnosing.
I’m reading people say they're about to be put on arthritis medication and I’m taking 14 different medications to try to keep things in check. You take Tylenol to control the pain, I could take the bottle and feel no help.
I’ve tried to find support through many groups and pulled away when what people describe isn’t even close to what I go through every single solitary day!
Non-stop cycle of pain and fatigue
The pain, the fatigue, the nonstop cycle, how it never ever ends, there’s no getting off the ride...there’s no escape. I got so tired of trying to describe why I use a cane.
I got a full sleeve tattoo this year down my left arm of the bone overtaking my skin. Like a giant middle finger to the disease. I’ve got to live with you doesn’t mean I have to love you!
Loki, my savior
Until I found this group, my little man Loki has been my savior. He’s been with me through every stage, through three Biologics! Yay, I’ve got such a strong immune system I’m trying Biologic number four!
Loki has been the bulk of my support, I’ve lost most “friends” who can’t cope or deal with it. Seeing how real-life got literally on the drop of a dime, how there’s no reprieve there’s no stop, it’s for life.
Finding support and building relationships
I come into turning 50 soon, a milestone that I don’t mind. I never thought I’d be doing it single, trying to find support and rebuild friendships.
Thankfully I have found this group, the few that have stood by me won’t waver. They’ve been there through infusions and tears when you want to throw it all in. Being reminded you are so strong and can carry on, that you are a warrior, that even though a battle may be lost for a day it’s not the end, not by a longshot!
You can rebuild it all if that’s what needs to be done, find the support, and on and on!
Thank you if you’ve made it this far, I know like oh so so many this is such a long fight. It never stops it never ends, there’s no getting away but the support we give each other means everything, I’m grateful I’ve found this group and found real support. Even if it feels like it’s taken a lifetime to find it!
Do you notice worsening flares in colder weather?