Ankylosing Spondylitis Ten Years After Diagnosis

Ankylosing Spondylitis Ten Years After Diagnosis

February is always a hard month for me. 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 – 10 years ago.

Nevertheless, February has continued to remain a crappy month for me.

February used to be a month that John and I used to travel over the Lunar New Year holiday. 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 the holiday, I thought I’d be able to write a bit more for My Several Worlds, but my body did not cooperate and I spent my holiday time 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 ten years after diagnosis.

When I first received my Ankylosing Spondylitis diagnosis through NTU Hospital in Taiwan, I was grateful to finally 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’m 44 now, but I was showing symptoms of AS at age 24. 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.

Disability in Taiwan

A bad day means getting around by wheelchair.

It was also easy to believe that the pain I was experiencing was normal. I didn't know any better, and I assumed that everyone felt the way I did after a hard workout. 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 milestone in my life 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. 

  1. 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.
  2. 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.
  3. I wish I had known my limitations earlier and started learning to live with them earlier.
  4. 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.
  5. 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 or how mercurial it is.
  6. I didn’t know that AS comes with other autoimmune issues. When I was hit with new diagnoses several years later, I was unprepared.
  7. I didn’t know I’d have to buy a wheelchair or that I’d be using one regularly within four years into my diagnosis.
  8. I didn’t accept that this disease is systemic and hits every part of your body.
  9. 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.
  10. 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.
  11. That I’d lose friends because people couldn’t handle having a friend who is sick all the time or they didn’t understand that I was canceling our plans because I was sick.
  12. 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.
  13. I wish I had thought to ask my doctors at NTU Hospital 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.
  14. 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.
  15. 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 pushed hard for access to better medical treatment. A year ago, I was in a wheelchair. Today, thanks to pushing for access to biologics for ankylosing spondylitis, 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. The first books I read on this topic were The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance – And the Cutting Edge Science That Promises Hope by Donna Jackson Nakazawa and The Anti-Inflammation Diet and Recipe Book by Jessica K. Black. 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 drink hard liquor or red wine, but I’ll have the occasional glass of white wine or a beer or two every once in a while.

I immediately stopped smoking. I’m approaching my 10-year smoke-free anniversary in June 2019.

Friends who made an effort to understand and stay in my life. Those people are still in my life and I’m grateful to them for checking in. 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.

Reaching out to support groups and being an active participant in these groups. Being with people who understand me because they are going through the same thing helps immensely. This is not a disease you can manage on your own.

Modifying my home to make daily tasks easier. Black kitten cuddling with girl.

Accepting my limitations and building on activity lists for housebound days. 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.

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.

 

 

7 thoughts on “Ankylosing Spondylitis Ten Years After Diagnosis

  1. Micki H.

    This is one eloquent post.

    I can’t even begin to tell you how much we empathize. But I know you know.

    I sure would like Donnie to learn more about the private group.

    I am proud of you.. Keep writing.

    I haven’t written posted or submitted anything in a long time. Keep writing Carebear!

    Reply
    • Carrie Kellenberger Post author

      Hi Micki! Thank you so much! It means so much to me that you stopped by to read this and to say hello. The closed private group is with the Canadian Spondylitis Association. It’s not restricted to Canadians. We have a number of different nationalities in there sharing and it’s a very safe and understanding group of individuals. Lots of love to you both and Sonya, of course!

      Reply
  2. Shahida P

    Hi
    Thank you very much for sharing your experience with AS. I have lumbar spondylitis since 8 months, have stopped gym too,.. putting on weight,…etc….
    Can you guide me to some online resources on medication,diet and sleep?

    Thank you

    Reply
    • Carrie Kellenberger Post author

      Hi Shahida,

      I strongly recommend visiting the Spondylitis Association of America’s website and having a look at their forums and their Facebook page. The Canadian Spondylitis Association also has a closed and private support group that is very informative and it is open to people of all nationalities, not just Canadians. These are the two best resources I know of.

      Reply
  3. Fili

    Hi Carrie,

    Been away from Taiwan since 2009 so wasn’t keeping track, thought I’d stop by for a nostalgia tour, and then read through all of this.

    The things you’ve been through this decade. Can’t even begin to imagine. The things I take for granted about life and health, it’s all suddenly seems so fragile.

    Having a blog can serve all kinds of means, I know it has for me in various stages, so seems important to me that you found a way to use your blog to communicate your journey to the world and hopefully find others going through similar things.

    Thanks for sharing, and being. Stay strong, keep writing.

    Fili

    Reply
    • Carrie Kellenberger Post author

      Hi Fili,

      It’s great to hear from you. I have followed your journey over the past decade with much admiration. I rarely comment, but I’m reading and watching. I can imagine reading my news was a huge shock. I wasn’t sure what to do when I got my diagnosis. I was able to travel for 5 more years before it stopped me in my tracks. Then I wondered what to do with this site and realized the title still covers things, I just had to move to a different mindset and think about how to work it all together.

      I’ve come to realize that if we don’t have our health, we don’t have anything. So I try to take special care of myself and keep things honest and real. Frankly, I’m amazed that people are still following MSW, but it’s a blessing and I’m grateful for it. Thank you so much for the support and encouragement to keep writing.

      Reply
  4. Debbie

    I just came across your journey and find it to be very interesting and helpful knowing im not alone. I have been on biologics for a year now and no improvement.i was told by my reumy that i had a very aggresive form of as. Can you recommend a book on as that i should get so i can learn everything and anything regarding this horrible disease. I look forward to hearing from you and i will keep reading your journey.

    Reply

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