Thrown Upside Down and Thrown About Twice

By Mihaly Gyurics

4 min read

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!

Me and my little boy Loki another pain day

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Nadine Cruz Member
<inline-mention username="Mihaly Gyurics" user-id="4584165"/> your story truly touched me because i can relate to so much of your journey battling this disease, I'm 38 now I was diagnosed when i was 34 and I'm also on my 4th biologic and have taken several different medications as well as pain injections I'm in physical therapy now for the 5th time but nothing seems to help feels like i get worse by the day instead of getting better i read others stories that have been battling this condition for years im it scares me for my future im just grateful for this community and the people i have found along the way in the last 4yrs. I hope you are doing well my best Nadine (Team Member) 
1. Mihaly Gyurics Member
 <inline-mention username="Nadine Cruz" user-id="4610320"/> hello Nadine … I’m not going to pretend it’s something it’s not… it’s been a battle and it has been since I was 14, there’s times I’m able to think beyond the pain and handle it well. Where I can keep cheerful and even though the pain is always there, even though it never leaves me I can function. There’s times where it’s a fight to just get out of bed, those days are becoming more frequent. I have no clue what the next 35 years has in store for me, truthfully I try to not think that far into the future. This disease has stripped so much from me as it is, I don’t want to think for what it might do to me or what condition I might be in down the road. I truly hope things get easier, I hope for so much to happen all I can truly say is I’ll keep fighting. I don’t know any other way to be, I don’t know how to surrender. I’ll keep fighting right to the end.
Lawrence Rick Phillips Moderator & Contributor
 Thank you for joining our little group. I also am medically retired, not by choice, and I am not happy about it. But life goes on. I will say that for me as time has gone on I have found other things to enjoy and in particular as i have aged I feel better about things. Oh and Loki looks like a great pup!! 
1. Lawrence Rick Phillips Moderator & Contributor
 <inline-mention username="Mihaly Gyurics" user-id="4584165"/> I so hope you get to feeling better soon. I know it is such a tough road. But you can make it. After all if not I bet Loki will make you stick to it. 
2. Mihaly Gyurics Member
 <inline-mention username="Rick Phillips" user-id="2389838"/> thank you, I’ve been on this road now for 35 years… I know it’s going to have its good days, weeks, months and sometimes years when things all line up. I know my path has started new again … as much as I may go through bad days that roll into weeks, months …. It will pass. I may stumble a few times, I may crawl, I will always get up and carry on. I don’t know how to give up, it’s not in my nature. I’ll fight to the end … why we all earn that label Warrior. It’s not about giving up, it’s making it one single day at a time!
James Hollens Moderator & Contributor
Hi <inline-mention username="Mihaly Gyurics" user-id="4584165"/> , Thank you so much for sharing your story. I admire your bravery for both getting through all of those things and being willing to open up about it all too! So pleased that you joined us in this community - the AS club is not one that any of us chose to join but it's great to hear from people like yourself that remain so positive despite everything! How are things going with biologic number 4? Which one are you trying at the moment? Happy birthday in advance! Have you got any plans for the big day? Wishing you all the best, James (Community Member)
1. Mihaly Gyurics Member
 <inline-mention username="James Hollens" user-id="2386640"/> thank you, I hoped that by sharing that maybe others would see there’s options now, we have choices and there’s so much support when you find the right group. I’m taking Cimzia now as my fourth Biologic it has a tentative hold on my AS, however the fusion damage done to my lumbar is pinching my sciatic nerve. I’m on a cocktail of medications trying to keep pain in check. I have hope that the pain clinic will also help with stabilizing that side of things. I’ve just started the process with them. I try hard to stay positive, I’ve been down the rabbit hole it just spirals. Once your down it’s so hard to get out, that’s not saying I don’t have my days like everyone, I just try hard to remember this life is a gift. We all are fighting something, kindness goes so very far like AS we can’t always see the fight. Ahhh for my 50th … it’s honestly ten months away it only just sunk it it’s coming, like your 19th or 21st! It doesn’t feel to me I should be this age, that this amount of time has gone by … it feels like a snap of the fingers I was 20. AS has changed my life so much, I suppose if I stop and think of it … the best thing I could hope for is a flare free day. Being with close loved ones, be that friends or family. Just to be able to appreciate the life I do have and that I’ll have another day. It’s surreal to me in many ways I’ve lost friends already that I’d expected to be there forever.