My 50th Bday Present was a Walker
This is my story, or should I say journey? It took 35 years to get a simple diagnosis! Day after day. Week after week. Month after month. Year after year. I had dibilating pain in my (now known) SI joints.
Excuse after excuse
I heard BS excuses for 25 years form doctor after doctor. You name it, I heard it.
"It is your period?" "It's because you're athletic." "You are pregnant." "You just had a baby." "You carried kids and groceries." "You strained a muscle." "You lifted heavy boxes.""You are 15 yrs old & have arthritis."
I had pain In my SI joint as young as 15, maybe younger. I can just remember it being prominent at that age.
(Gotta LOVE the one that it was my period. Almost 52 and two hysterectomies later. It was not my period. Lol)
Juvenile ankylosing spondylitis
Around 15ish, I woke up with both arms so numb I thought I was paralyzed. My arms flopping as I turned my body trying to get up for school.
I. Was. Freaking. Scared! I screamed for my mom.
At 17, I would get knots in my neck and right shoulder blade (still don't know what else to call them other than knots ). The doctor gave me torodal shots I would feel good for a few weeks.
I remember counting down the months to 18, just so I could take myself to the emergency room.
When I was 19, I would wake up at up at 2, 3, 4 with my spine feeling like it's twisted. There's no other way to explain it. I'm almost 52 still deal with that feeling.
Issues with insurance
Fast forward to the spring of 1999, my mom had just passed. I was pretty much all on my own with my oldest son. He was 6 months old.
I changed him sitting on the floor of my aunt's basement where we had been living and I could not move. I couldn't lift a 6 month old baby. I kinda pushed him into the crease of my knee and sat there for 4 hours until my aunt came home and could she helped me up.
Off to the ER I went.
I got a referral for an orthopedic. They said my saccrum was rubbing into my pelvic bone and perscsribed me 6 weeks of PT.
As I started to feel better, I get some arrogant d*ckhead doctor tell me, "Okay, well, we're not going to treat you anymore. By law I only had to see you once. You being a Medicaid patient. I don't take Medicaid. I only take 'real insurance.'"
Did he just call me a drug addict?
I went back to my primary doctor when I was 29, who I have had been on and off with since I was 24.
I thought he was a doctor who cared. I was wrong. He left me in pain for more years than I would like to count.
Fast forward some years and 3 kids later. MRIs done on my entire spine.
My doctor: "Well, your neck and lower back are trashed. You will have good days and bad days."
Me: "Can we do any surgery or get me some meds to be able to function to take care of 3 Boys who are 2. 4 and 7?"
My Doctor: "Nope, you must be a drug addict. Since you want pain meds."
Me: "Ya wanna do a blood test to SEE what's NOT in my blood?"
Fast forward to fall 2012
Thanksgiving week, I spent the entire week shopping, cooking, and cleaning. My sister and brother-in-law had been having a hard time with money. So, I wanted to help give all the kids and them a good holiday. My niece and nephew loved me coming on the weekends because they could just eat whatever!
My oldest son's football team was in the playoffs, so we were spending more time out in the icy Chicago cold at the games. I pulled off Thanksgiving. The next game was that Saturday. I stepped out of the car to walk in the house and had never felt so much pain in my entire hip and I fell to the ground.
It took 5 months to get back to normal.
I had just started my own business at that time I couldn't work anymore. I never knew what day I could function or even get out if bed long enough to do simple things like wash dishes. I would have to hold myself up with one hand on the counter and do the dishes with the other hand.
What is ankylosing spondylitis?
One of my steady customers was telling me about his illness called ankylosing spondylittis. He was much younger but he had told me all about the disease.
One by one.
Symptom by symptom.
Each time I had talked with him it became more and more clear that this is what I had lived with my entire life.
Wow. It has a name. It is a REAL disease ! Guess what it was NOT my period. Lol (Had not had one since 2005 anyway!!)
Finding my rheumy
Now, how do I find a doctor that will actually listen to me?
After several doctorss and an 1100 mile move south in 2016 (I couldn't take the Chicago winters at all anymore ); after 3 long years fighting with doctors in Florida, I found the sweetest most wonderful rheumatologist in this world.
She looks at the MRIs and says, "show me where it hurts." She asked a few more questions, then, looked at her nurse said, "This is ankylosing apondylittis." She also diagnosed me with psoriatic arthritis. She also diagnoed me with uveitis, which can be a symptom or side effect of AS.
35 years later someone finally listened to me! Finally someone paid attention!
50 years old with ankylosing spondylitis
50 years old and I now have a name for why my neck, my spine, and my SI joints hurt so much all my life. Now, I'm on more steroids than I would like, more muscle relaxers, nerve meds, pain meds, biologics and methotrexate.
My 50th birthday present was a walker. Honestly nothing works. The pain gets worse and worse.
I end up over doing it every day.
My first grandbaby turned a year old last week. As much as my grandson, he wears me out, but I LOVE every second I have with him. At the end of the day when they pick him up or I drop him off, and I lay in bed and do not move for hours.
The SI joint is getting worse and worse. OMG!! The pain!!!
Everything has started to fuse from S1 to L5. Compression fractures T10-T11. My Neck is always in pain. C1 is the ONLY one that is is good shape!
Maybe if ANY one of those doctorss would have listened to me things wouldn't be so bad and the meds would be helping. In the last year I'm only getting worse.
My spine makes more noise than a squeaky hinge. Always said it feels like I need to be oiled. Simple movement my SI joint feels like the bone itself it's breaking !
But now my 16, 18 and my 22 year old boys are ALL showing signs and symptoms that I used to have.
I hope our healthcare doesn't get taken away. I pray with the passing of RBG we don't lose pre existing condition protections.
I hope for my 22yr old to get health care so he can get the proper meds and maybe he will have a chance at a better life.
My oldest and youngest are both very hard workers and I see this illness, along with hard labor, taking a toll on them. I'm afraid I'm starting to see the AS take hold of their bodies.
Being a woman with ankylosing spondylitis
It's a very crappy disease and noone acknowledges it's existanc or tries to help. Being a woman, they really want to ignore you when you test Neg for HLA-B27. It really doesn't mean a thing.
I now know WHY my great aunt walked around like the hunchback of Notre Dame. The crap is just in our genes.
Good Luck ALL
Kno you are not nuts!!!!
This pain and this conditong are REAL and YOU ARE NOT ALONE !!
Do you use the word disability to describe your AS?