Finally Getting a Grip on AS
Last updated: October 2022
Hi all! So here's my story, eight years after being diagnosed I'm finally researching about AS, hearing other peoples' stories and learning of alternative treatments.
I was diagnosed with AS by the Rheumatologist, after a number of visits to orthopedicians, trying to understand the hip and groin pain that gave me episodes of not being able to walk since childhood. I am HLA-B27 and when I first looked AS up online, freaked out. I promised I'd never type the name of this disease on google again and would not absolutely learn any more about it.
I was so scared from a quick glimpse of the search results! My doctor wasn't helpful either - he said it was just a name to symptoms I already had. No sir, he should have been more emphatic and shared the seriousness of my condition!
Pregnancy and ankylosing spondylitis
So two years into my diagnosis I gave birth to my first child and had a major hip inflammation. It was a natural birth and I was stuck in bed for one month. Using a cane to move around the house and trying to care for a newborn was devastating.
But not long after I recovered (acupuncture was key here, as well as some very strong drugs) AS finally caught up with me and I began having flares that kept me up at night and that I couldn't quite grasp. That's when I had to interrupt breastfeeding and begin treatment with Humira. Which I also refused to look up and understand more about. Humira did magic and I went into full remission, interrupting the treatment two years later. I hated those injections and cried every single time!
AS has taken a toll on me
I thought AS was totally behind me, a simple condition that I had managed quite well, but I had a second pregnancy and it's been very rough since giving birth to my second child - AS has taken such a toll on me.
Soon after delivery I wasn't able to walk again, but this time it took longer than two months for me to heal, based on cortisone. The hip inflammation was so much more aggravated. And simple actions such as putting on socks, getting dressed, cutting my toe nails and most of all, being able to sit on the toilet would make me shed tears. I couldn't handle my baby alone, I needed help from my five year old daughter, I depended on my mother and husband for everything.
And that was just the beginning of a very difficult moment, with a follow-up diagnosis of a very severe premenopausal osteoporosis! No one saw this while I was being treated with cortisone so many times to reduce inflammation! (cortisone is the worst for your bones).
Learning about AS
With this, I finally had some courage to look up AS and research more about the disease. I changed doctor's and was prescribed to go back to Humira. And despite my absolute FEAR of the medication, I am back to the injections, the disease is so active I cannot let it progress. Or at least that's how I heard it. It is so scary though.
I read about Dr. Ebringer and got into the low-starch diet, I picked up walking as an exercise in addition to swimming, as a treatment for my bone mass. And when I was coming to terms with all of this, I took an international flight to visit relatives and maybe because of the time on the plane or cold(?), I've been in bed with another severe hip inflammation for eight weeks. And its been so devastating.
Movement is important
I know I MUST walk and I MUST move because I have two very serious conditions. And yet I shiver at every movement. I wake up with stiffness in the middle of the night, I see elderly with walkers in the streets and relate to them. I see people in wheelchairs and fear that's my future. I see my sister and wonder why AS was triggered for me and from whom it came from. No one in my family has any history of autoimmune or rheumatic diseases.
I see my children and wonder if I'll ever be able to run with them. And my baby boy, I fear he'll jump on me and break my bones.
I'm looking into all supplements I can take in addition to Vitamin D and turmeric and whatever else besides my diet that I can do to ease this. And just hope that Humira will be a quick part of my treatment, helping me go into remission, but definitely not a part of my life.
Misunderstood by my family
My family doesn't really get the disease or research about it and when I start explaining I just shed into tears, so not much help there. So glad I found this group, yet I fear all the negative stories about biologics. I'm trying to convince myself it's not so new after all and that many side effects are simply not general, or very rare.
Hoping to return home soon (in a week's time) and feel better with the warm weather. :)
Do you notice worsening flares in colder weather?