Ankylosing Spondylitis Ten Years After Diagnosis
[Written Feb 19, 2019 – UPDATED FEBRUARY 2021]
February is always a hard month for me. Since I’ve hit my decade mark with Ankylosing Spondylitis, I thought I’d write some thoughts that reflect back on the past ten years after diagnosis.
Maybe it’s because of the weather. Maybe it’s because everything stops after the madness of the holiday season, and I hit a point where my body says, ‘Nope, I’m not doing any more.’
Maybe it’s because of the psychological impact of receiving my diagnosis in February 2009. You can read my AS story here.
Nevertheless, February has continued to remain a crappy month for me.
We loved traveling in February, especially in Asia for Lunar New Year. After my diagnosis, we managed one LNY trip after my diagnosis. Every other year, I’ve been too sick to travel and we’ve remained at home.
Over this past holiday, I thought I’d be able to write a bit more for My Several Worlds, but my body did not cooperate. I spent my holiday flat in bed with severe pain, migraines, and brain fog, which is why I’m getting around to this article today.
Today’s post is about what it has been like living with Ankylosing Spondylitis 10 years after diagnosis
When I first received my Ankylosing Spondylitis diagnosis through National Taiwan University Hospital, I was grateful to have an answer to the strange health problems I’d be experiencing for over 20 years at that point. I was 34 when I received my diagnosis. I was showing symptoms of AS at age 24. I’m in my mid-40s now.
It’s possible I had symptoms even earlier than that when I was most active in my life.
I attributed those symptoms to being at the gym or to sports injuries. My doctors believed the same thing.
A bad day means getting around by wheelchair.It was easy to believe that the pain I was experiencing was normal. I didn't know any better. I assumed that everyone felt the way I did after working out. Click To Tweet
I haven’t been able to go back to the gym or work out since July 2014. I spent all of 2018 housebound. I can still manage short walks, but the number of diagnoses I’ve received since getting my AS diagnosis have affected my life in the worst way. I am no longer capable of doing the things I once lived for.
These past few months leading up to this lifetime milestone have had me asking myself a number of questions.
Did things happen the way I expected them to happen? Not at all.
There are many things I wish I had known in my first year with Ankylosing Spondylitis that I never found out about until later. Most of this can be blamed on lack of research and lack of awareness. A lot of it can be blamed on doctors who didn’t know what they were looking for or doctors that had (and still have) misconceptions about what AS is and who it affects.
Here are some things I wish I had known about Ankylosing Spondylitis in 2009 that I know now:
I hope these points help patients who are newly diagnosed.
*I didn’t understand back then that this disease would disable me within 10 years. This might not occur with every patient, but I feel that if I had been prepared for this better, I’d have done things differently.
*I wouldn’t have pushed myself so hard after diagnosis. I kept up with going to the gym five days a week and I burned the candle at both ends. I didn’t allow my body time to rest. I took what I had for granted.
*I wish I had known my limitations with illness earlier and started learning to live with them earlier.
*I didn’t understand the true meaning of incurable. No one really understands the magnitude of this until you experience it. It takes time to get your head around the fact that you’re never going to get better and your life will require a complete lifestyle change and constant monitoring.
*I didn’t think that the more serious complications of AS would happen to me, like fusing, heart problems, uveitis, or not being able to walk easily or lift anything heavy. I didn’t know that there are varying degrees of severity with AS. I also didn’t know how unpredictable this disease would be..
*I didn’t know that AS comes with other autoimmune issues. I was unprepared when I was hit with new diagnoses a few years later.
*I didn’t know I’d have to buy a wheelchair or that I’d be using one regularly four years into my diagnosis.
*I didn’t accept that this disease is systemic and hits every part of your body.
*I wish I could’ve gained access to biologics four years ago when I started asking my rheumatologists for them. I didn’t know that Taiwan’s universal health care would discriminate against me because I don’t have the genetic marker for AS. Because of this, and the fact that no one actually tested me for the genetic marker (HLA-B27) until I requested it in 2015, meant that it took four years to gain access to biologics. Had I accessed biologics sooner, maybe I would be better off now. I’ve lost a lot in the past four years because my doctors wouldn’t allow me to bump up from NSAIDs and DMARDS to biologics. Now it’s too late to get back what I’ve lost. The damage that has occurred since July 2014 is irreversible.
*I wish I had been able to start using CBD and medical marijuana sooner and that I could have access to it in Taiwan. When I’m in Canada, it helps me manage my symptoms. I don’t have that option in Taiwan.
*That I’d lose friends and loved ones because people couldn’t handle having a friend who is sick all the time. They didn’t understand that I was canceling our plans because I was sick.
*I didn’t know that some of the pain I was experiencing was fusing, but I figured out pretty quickly what my daily pain levels are. A normal day of pain is rated at 5 to 6 and I’m capable of going out for a few hours every once in a while as long as I stay seated. A day that is an 8 or a 9 means complete bed rest. A day that is level 10 means a trip to ER.
*I wish I had thought to ask my doctors at NTUH for a copy of each visit from 2009 to 2014. They lost half my records and my diagnosing scan, which resulted in a lot of backpedalling at my next hospital. It also resulted in me losing my AS diagnosis to an ignorant doctor who didn’t believe women get AS. It was traumatic for me to go through that, and it took two years to get it listed back on my charts.
*What never-ending pain does to a person. It changes you. You realize it doesn’t take much to break a person’s spirit. I didn’t know that I’d never know another day without pain or that pain would be my closest companion. At the same time, you remember there is always light at the end of the tunnel.
*I was unaware of the psychological impact this disease would have on me until four years after my diagnosis, when I started suffering from bouts of depression in 2014 that were so deep and dark, it felt like I’d never see another day.
What helped me when I was diagnosed with Ankylosing Spondylitis?
I owe a huge thanks to the Spondylitis Association of America for ‘having my back’ and sending me information when there was no information to be found. For this reason alone, I encourage anyone who is freshly diagnosed to join the SAA as a member to learn about the cutting edge research they compile for members, patients, and caregivers.
The Canadian Spondylitis Association has also been a huge source of support to me. I am grateful for their information and for their closed patient support group that allows me to ask questions about my illness out of sight of prying public eyes.
I write about my illness regularly. Part of this is therapy for myself. Writing about it helps me deal with it. Writing about it also helps spread awareness. AS is a disease that wasn’t getting any attention 10 years ago. We’ve come a long way since then and this is why I’ve kept sharing my story. It helps me knowing that I am helping others just by writing about AS.
I pushed hard for access to better medical treatment. A year ago, I was in a wheelchair. Today, thanks to pushing for access to biologics, I’m standing on my own two feet for an hour or two each day.
I changed my diet.
After reading as much as possible on autoimmune issues in 2011, I started revamping my diet. There is no disease or health condition in the world that can’t be made a little bit better with healthy eating that is suitable for your body.
The first books I read on gut health and elimination diets were:
After reading these two books, I started looking at holistic options by playing around with my diet. I started my first elimination diet in 2011 to find out what my food triggers were.
Diet is huge but it is not a cure for AS. It helps me to manage my day to day symptoms though.
In the past decade, I’ve eliminated soda, bread, pasta, soy, artificial sugar, milk, soft cheeses, nightshade vegetables like tomatoes, eggplant, and mushrooms, high fructose corn syrup, and omega-6 fatty acids such as vegetable oil, and processed salad dressings. I try to go gluten-free as much as possible.
I have tempered my consumption of alcohol, fried foods, and processed meats. I don’t smoke or drink hard liquor or red wine, but I’ll have the occasional beer or two every once in a while.
Most friends have made an effort to understand and they’ve checked in and asked questions. These people are still in my life and I’m grateful for them. I still find it hard to answer when someone asks me how I’m feeling. I don’t know how to explain that I’m never feeling well, but I know they get it.
I have a lot of housebound days and I use this time to read, color, make art, practice ikebana, stretch, play with my cats and get all the fur baby love in the world, and, of course, writing. We also modified our home to make things easier for me.
This last point brings me to the end of this post and leaves me with two questions for those of you who are reading this and suffering from a chronic illness.
Whether you have AS, RA, Lupus, MS, Crohn’s, Fibromyalgia, ME, Endometriosis, or something else, if you have had your diagnosis for ten years, what do you wish you had known in your first year that you now know?
What would you tell yourself? What helped you during your first decade while living life with a chronic illness?
I’d love to hear from you.
#ChronicTruths— Carrie Kellenberger – My Several Worlds (@globetrotteri) February 21, 2021
What are your daily pain levels?#AnkylosingSpondylitis #MECFS
An average day of #ChronicPain for me = 5 or 6. I can go out for a few hours.
8 or 9 = bed rest
10 = ERhttps://t.co/OJdSoBPX7L pic.twitter.com/0MRLoXEnMy