The Great Inflammatory Arthritis Flare of 2022

The Great Arthritis Flare of 2022 is a compilation of notes that I took from bed last year while waiting for my axSpA flare to burn out. It hit all my major joints and I was left sitting in bed for months and unable to bend my legs and arms.

This is my first post of 2023 and it coincides with the first post I wrote on My Several Worlds on January 5, 2007. My Several Worlds is 16 years old today! Can you believe I’ve been updating this site for that long and have 900+ articles here to enjoy?

I spent most of my year in bed waiting for my arthritis inflammation to go down and hammering my arthritis as hard as I could with every med I had access to. I finally found some success with Taltz in October 2022.

Since I couldn’t sit at my desk much this year, I decided to take voice notes each month to tell you what a year in a glance looked like for me in 2022. This was my fourth time out of remission since receiving my diagnosis in 2009.

The Great Inflammatory Arthritis Flare of 2022

In January I celebrated my 47th birthday. I was out for three hours and didn’t have any problems with my first month in 2022. I was pacing appropriately and didn’t have a sudden increase in symptoms from my whopping three hours out on the 18th. We had a nice dinner at a South Indian restaurant with friends and were home by 8:30pm. I’m officially old.

In February we actually had a good Lunar New Year vacation for the first time in years! Under the Chinese astrological zodiac calendar, I’m a tiger and I was thinking, ‘Hurray for me! Lucky Year of the Tiger!’

Then the Tiger turned around and bit me in the butt for the rest of 2022.

We were evicted by a scam landlord during the LNY holiday. Despite not doing anything wrong, he evicted us because he rented us a leaking, watery shit-hole of an apartment and we asked him to fix it. He promised to do this when we moved in in May 2021. Once he realized building management was not going to help him and we weren’t going to back down on telling him to fix the leaks, lack of hot water, and more, he evicted us.

The kicker was receiving an eviction notice from him asking us to leave his apartment nice and tidy despite the fact that he had left the roof and walls neglected. There was water damage everywhere. Plus he refused to give us our deposit back.

This forced us to stay in wet, moldy and unsafe housing until May 2022 in order to ensure we got our full rent back. Had we gotten our deposit back, we would’ve left at the end of February.

Here’s a fraction of what we were living with: Our walls were jackhammered apart with no warning. You can see the wall never dried. Water was seeping in through light fixtures, but ‘it’s not a fire hazard’. Our front door literally fell apart and he wouldn’t fix it, so we duct taped it and left it like that.

The Great Inflammatory Arthritis Flare of 2022 – March 2022

On March 8, I remember sitting outside with John and telling him that my knees felt full and stiff. It’s pretty easy to tell when arthritis is starting to burn hot and bright. My legs feel like they’re filling up with cement. I can literally feel the inflammation building up. My joints get hot, red, and swollen, and obviously I get stiff fast. I put ice packs on my legs and hoped it wasn’t going to be a big deal, but axSpA had other plans for me. It was a huge arthritis flare-up. I was officially out of remission for the fourth time since receiving my Ankylosing Spondylitis diagnosis in February 2009.

Not good at all. Two days of trying to bring swelling down in knees & feet: Meds + Ice packs + RICE
= not working

I haven’t done anything except dinner, hospital & a women’s swap since last week. I started feeling awful four days ago. Worried now.#arthritis #Spondylitis #axSpA pic.twitter.com/Eq1iP80SOv

— Carrie Kellenberger – MySeveralWorlds.com (@globetrotteri) March 12, 2022

It was terrible living in wet and cold housing on top of this flare-up. We were in the worst position we could be in for my health.

Like many inflammatory arthritis patients, I’d developed antibodies to the biologic I was taking to suppress inflammation. I had four great years on Enbrel, but none of my doctors ever mentioned the possibility of outgrowing that med. That’s when I realized I had been paying thousands of dollars for meds that hadn’t worked since July 2021! When I flagged troubling symptoms in November 2021, my rheumy blamed it on meds and refused to order tests for me. By March, he couldn’t ignore my repeated mentions of something being really wrong because I couldn’t walk.

Stats show that many patients have full AS symptoms returning within 6 months to a year of meds not working. It happened right at the six month mark for me and left me fully disabled and sick. So I started the next med on the list: Humira.

As if all this wasn’t enough to deal with, work was ramping up. Taiwan’s borders opened in March which meant teachers could enter to teach again. For the first time since COVID started, I had a steady income coming in again.

But now I have to work hard on top of being extremely sick. ny chronically ill person knows this is the worst kind of situation that a person can be in. It WILL make you sick. I started looking into disability assistance here in Taiwan and realized that ‘foreigners’ aren’t eligible for any kind of disability assistance.

This is despite the fact that I am a permanent resident here with a fully legal Taiwanese business. Then I learn that disabled Taiwanese folks get $125US a month for assistance. Even if I did have assistance, that kind of money wouldn’t even cover food. Things are going from bad to worse.

The Great Inflammatory Arthritis Flare of 2022 – April 2022

In April I worked and got sicker. I had to beg my rheumatologist to give me steroid injections in both knees. By that point, my BASDAI score was 8.2.

Anyone who has had steroid injections in their knees knows that the pain gets way worse before it starts to work.

By that point, I was pretty much attached to my bed and chair full time. I couldn’t do anything. Having been on Humira for a month at this point, I was thinking those self administered injections for arthritis might be working, but they weren’t. My arthritis was getting worse, and I was living with non stop migraine activity, fatigue, digestion issues, skin issues, and more. There was no way to reduce the stress I was under. I had to keep working to afford the loading doses of medications that were not working. Plus we had our second move in 13 months looming over our heads and we still hadn’t found a place to live.

I can’t fly and have to cancel my flight home to Canada this summer. I haven’t seen my parents since August 2019.

The Great Inflammatory Arthritis Flare of 2022 – May 2022

May was AS Awareness Month, Fibromyalgia Awareness Month, ME Awareness Month AND we had to move! Plus I had a nasty and long bout of uveitis that was proving to be stubborn. My BASDAI score was still climbing.

We found a place in early May in a city an hour outside of Taipei and decided to leave Taipei completely. It was time for a change. Our new home is beautiful, quiet, and accessible. We found a gorgeous 2nd floor apartment with a beautiful garden patio in a cute neighborhood with lots of grocery stores within reach. Everything was accessible by wheelchair! Am I dreaming? Are we really in Taiwan?

Once again, we packed everything up and we moved on May 14. When John finally pulled up at our new home with our last load of stuff, he had to lift me out of the moving truck and push me upstairs. That’s where I stayed for the next two months.

I was still working my butt off with my business. During that time, I insisted my rheumy line up my bloodwork from month to month and that revealed that Humira wasn’t working and he missed it! So he switched me to another biologic called Cosentyx.

Unfortunately, he did not tell me about the loading dose and that greatly affected my recovery. I dropped another NT50,000 on meds the following month and hoped with all my heart that he hadn’t switched my meds for nothing. When you spend NT30,000 to NT50,000 PER MONTH you expect to have something to show for it.

Nope. Not for me.

Despite throwing 1000s of dollars at my #axSpA flare that started Mar 8, I am getting sicker. The #fibromyalgia & #ME are in a frenzy. #MCAS flushing, #POTS is v. bad, non stop #migraine attacks, etc. Gonna be ANOTHER long summer in bed. This is not life! It’s survival. #NEISvoid pic.twitter.com/c827bdV50c

— Carrie Kellenberger – MySeveralWorlds.com (@globetrotteri) June 18, 2022

The Great Inflammatory Arthritis Flare of 2022 – June 2022

June is unbearable. I am past all breaking points. I realize I was past those breaking points months ago and now the disease is winning the race and kicking my ass. I’m still working and trying desperately to slash anything I can to reduce this unbearable situation. I started implementing strict rest days in as many ways as possible. That meant focusing on me and trying to wrap up work responsibilities. I’m not going to make it much longer if I keep going this way and I know I need to stop. We decided I’d take Wednesdays off to give myself a break mid-week so I can power through the rest of the summer.

MISERY.

The Great Inflammatory Arthritis Flare of 2022 – July 2022

July brings more illness. I’m in the thick of it and I’ve been in this dark place before. The clawing out this deep well of illness will likely happen sometime in September or October. Maybe later? My goal at this point is to finish work and take time off, but I’m unsure when that will happen. It could be many more months before I can start that because we’re having an unusual year. In a normal recruiting season, we’re done by August 15th. Not this year!

Maybe September, October or November are more realistic for time off? I’ve realized I’ve now been flaring for 10 months as my health problems started in July 2021. Typically patients like me get an idea of recovery time based on the amount of acute illness endured. I’ve had a 10-month flare and that should translate to 10 months of recovery. Perhaps September will be good for me?

Pro to July 2022: I invested in my first new and customized cane! I also decided on a vote of no confidence in my idiot rheumatologist and found a new rheumatologist that came highly recommended. He seems nice and was shocked by my appearance and lack of mobility. He ran a bunch of tests and confirmed my axSpA was bad and I was riddled with inflammation in my hips, SI joints, knees and feet.

The Great Inflammatory Arthritis Flare of 2022 – August 2022

August is looking like slow recovery. Cosentyx seems to be working for me. I started walking again during the second week of August and when I say walk, that means I left my house and walked 5 mins to the park next to our house, sat, and walked back. By the third week of August, I was able to walk a block around our neighborhood. We found a great restaurant and that was my first meal outside my home since May. A little bit of swelling pops up in my knees and feet when I walk, but it’s nowhere near what it was from March through July. Less inflammation also means I can eat a bit more as it isn’t hitting my stomach, which also becomes swollen and irritable during flare ups.

My new rheumy is great and he insists on petitioning Taiwan NHI for med coverage for me. I’m not holding my breath. I’ve done it before and the chances of me getting coverage are very slim. He insists we should try. I insist I went to him to get back on my feet and that’s all I want at this point. By September, he has me back on my feet. Grateful for my new rheumy! Update: He did win coverage for me!

The Great Inflammatory Arthritis Flare of 2022 – September 2022

In September I felt it was safe to start increasing weekly activity so I went at it slowly. My rheumy thought I was becoming more stable but by Sept 20th my blood inflammation levels had spiked again. On Sept 27 I became very sick and ended up at the hospital for pain management. At that point, my rheumy decided to move me to my fourth biologic, which is also my third biologic this year. I started Taltz and again spent $50,000 on loading doses and hoped it would worked. Thankfully, my readers have donated and that helps a bit with the financial stress of being chronically ill.

The Great Inflammatory Arthritis Flare of 2022 – October 2022

I was no longer in stable condition when I entered October. Then COVID entered our home in the midst of my petition process for med coverage. I miraculously did not get COVID but ended up caring for John who had to isolate for 10 days.

By the end of October, I seem to be doing better again. Maybe that flare was a short one? My body is a mystery and I give up on trying to figure it out.

The Great Inflammatory Arthritis Flare of 2022 – November 2022

November is conference month and I have health conferences to attend. I can do them from home and still provide great information to my community and I’m thrilled to participate. All my teachers have arrived in Taiwan safely. They’re all happy and doing well. I can stop worrying about them.

It turns out that November was BUSY. I was a speaker on the Main Stage of Support Fibromyalgia Network’s Fibromyalgia Community Conference and I am a 2022 Legacy Award Winner. I did an hour long presentation on advocating from the international stage.

The second week of November I attended the ACR22 convergence which is a four-day convergence on all things rheumatology. I also found out my labs are within normal range. Taltz is working! HIZZUH!

The Great Inflammatory Arthritis Flare of 2022 – December 2022

December was a mixed bag. I found out my second petition for med coverage was denied again. I was so angry to learn that what I’ve been going through since 2009 is not enough to convince the medical board I need these meds. Spending $1,200 in cash every month since November 2018 has broken me.

All my life I have been financially responsible and fairly secure. Illness has taken that away and left me with no opportunities to save for whatever future I have left. I have been forced to continue working. I’ve taken on as many freelancing gigs as possible. My freelance jobs included site development, content creation, social media management, professional editing, teaching adults, book editing, and more to make ends meet.

I have had $100 to $300 left each month after I bought my meds. To say I was shocked to be denied again during a massive disabling flare is an understatement. I had to schedule an emergency appointment with my rheumy to get more meds and he said there is still a chance and my application was stalled. He said he would contest it. I thought he was just being nice and sympathetic as he said from my first visit that there is no doubt I have AS. So I shelled out another $1,200 in cash that day and came home and cried so hard.

I kept telling myself that day that I went to him to get me back on my feet and he did that. He has been so good to me. I shouldn’t be disappointed. I’m NOT disappointed with my doctor. I’m disappointed and angry with the situation I’m in.

A few days later, I got THE CALL. I was approved for my med coverage on December 8th! HURRAY! And suddenly things are looking up.

What a year, eh? I’m glad it’s over. Every year I’m ready for things to be over and hoping with all my heart that the next year will be better.

I’ve submitted this article to A Chronic Voice’s January 2023 blogger link-up because I adore Sheryl and she also had a terrible year in 2022.

Reading Resources:

• Taming High Disease Activity in AS – Arthritis.org
• Understanding flare in axial spondyloarthritis: novel insights from daily self-reported flare experience National Library of Medicine

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