Where do I start? I’ll start with another disabling arthritis flare that started on March 8, 2022. It’s now July 8, 2022. This year might be the Year of the Tiger, which is my sign, but it has not been kind to me.
Today marks month four of being fully disabled by AxSpa and Psoriatic Arthritis. I have not been able to leave home aside from hospital appointments.
Another Disabling Arthritis Flare – My 4th Time Out of Remission
This time last year my health started declining quickly. By the end of September I was feeling awful. By November, I knew something was wrong.
I never suspected my new arthritis injections stopped working until it was too late.
My rheumy has let me down twice over the same issue: Failure to read my lab work and failure to recognize that the symptoms I was describing at my appointments meant my inflammatory arthritis was moving fast.
Bloodwork is a dead giveaway that my arthritis is taking over. I gave him a growing list of symptoms at each appointment from September onwards. He kept blaming my symptoms on meds even though I had steadily reduced all my meds at the end of 2020 and 2021. He just wasn’t listening.
My arthritis symptoms were back. My rheumy dismissed them.
These symptoms should’ve been a dead giveaway that Spondyloarthritis was on the move again.
- increased pain everywhere, especially spine, hips, legs and feet
- increasing autoimmune fatigue
- difficulty in moving
- loss of range of motion in arms, legs, and shoulders
- hands, wrists, and elbows are on fire
- hot and burning joints
- rashes everywhere
- swollen glands and fever
- oral ulcers
- eye infections
- increasing migraine activity
- increased brain fog
You name it, I had it in November 2021.
When I finally convinced my rheumy to line up my bloodwork from July to Nov 2021, it was glaringly obvious. I don’t understand how he missed it. Enbrel was no longer working for me.
I had to switch to a new biologic, so I went with Humira and started right after that appointment.
Humira wasn’t helping in March 2022. My doc missed it again.
How can you be a rheumatologist and not check your patient’s lab work when you’ve put them on a new medication?
When my knees blew up in early March, I knew I was in serious trouble. I was more tired than usual on March 6. But by March 8, I had swelling that was worse than the swelling I had with my Ankylosing Spondylitis diagnosis in 2009. I couldn’t stand or bend my legs. It was instantly disabling.
We went back to my rheumy in mid March. and I asked him to line up my labs since starting Humira. At this point, I’m feeling like a broken record with this guy. He is not doing his job!
It turns out my rheumy wasn’t monitoring my labs on Humira either. If he had, he would’ve seen my blood skyrocketing. By the time I saw him in March, it was too late. Humira wasn’t working.
Full flare ahead: It feels like you are running off a cliff with no parachute. You know the worst is coming but you’re helpless to stop anything ahead of you.Another Disabling Arthritis Flare: Full flare ahead: It feels like you are running off a cliff with no parachute. You know the worst is coming but you're helpless to stop anything ahead of you. Click To Tweet
I switched to my third biologic in five months in March 2022. Cosentyx alone is not enough to break this inflammation. I had to double all my other meds to hammer this flare and that has meant additional med side effects that cause chaos elsewhere.
Now I realize that I had FOUR WONDERFUL YEARS ON ENBREL. I have not been able to get that back. I hope with all my heart I can get back to that level of health, as limiting as it was.
It took less than five months for all my inflammatory arthritis symptoms came back after starting Humira.
An incompetent doctor AND a scammy landlord having us live in unhealthy living conditions were triggers for this landslide.
Out of Remission with A Disabling Arthritis Flare – My 4th Time in 14 years
This flare is worse than what I experienced in 2009.
It’s worse than that mega flare of 2014 and 2015.
There is no comparison to the summer 2017.
It has already been a LONG spring and summer and there are no signs of slowing.
Each time, it has taken 10 months minimum to get back on my feet.
Any thoughts I’ve had about maybe not having arthritis as bad as my docs say were instantly confirmed.
Shit basically hit the fan with every part of my body.
It’s wild how much you forget about these types of mega flares until they come back. Then you look at your destroyed body and literally think, ‘There goes my year. Am I ever going to recover from this?‘
I’m still in bed and haven’t left my house except for hospital appointments. It’s now July 8 2022 and this is my four month mark from March, but this is actually month seven of this health crisis.
Steroid Injections Suck
From early March to April 28th, I lived with stubborn swelling in my knees that would not let up. My rheumy waited until April 28th to suggest steroid injections in both knees. I was not able to stand or walk at all for close to three weeks after the steroid injections. When the swelling started going down, I could stand a bit, but not for long.
If I spend more than a few minutes on my legs, the swelling comes back.
Plus my POTS attacks (Postural tachycardia syndrome) are worrisome. My doctor DISMISSED them at my June appointment and told me to exercise more as I’m sitting in a wheelchair in front of him.
He demonstrated an exercise that was literally him shaking his leg up and down. My husband and I were disgusted. Clearly he knows that when you’re experiencing the kind of knee swelling I have, your joints feel like they’re slipping around when you move. For months, I had to move my legs together because it felt like my knees were going to dislocate. Shaking them is NOT an option to resolve POTS attacks.
We left the hospital that day with my four years of medical records from Tzu Chi Buddhist Hospital and immediately started looking for another rheumatologist.
I'm used to things going wrong because that is the nature of chronic illness. You can expect some victories, but there are way more letdowns that victories. Click To Tweet
Moving Again in 13 Months – A New City – ZHUBEI
To say that MOVING to a new home fresh off the drama with our last move has been unspeakably hard. Try moving house when you can’t walk or stand. I don’t advise it. I don’t advise moving at all with chronic illness, but we had no option as the environment we were living in was unsafe.
That said, this move has been a good one for us!
We are now living an hour from Taipei in beautiful Zhubei City. It turned out to be a blessing in disguise.
One of the reasons we moved out of Taipei after being there since 2006 is because Taipei is not accessible.
Zhubei is beautiful, it’s quiet, it’s accessible, and our new home and garden is lovely. When I’m able to venture outside in my wheelchair, at least I’ll be able to enter a grocery store or restaurant with some ease.
Caleb (our 17-year-old son) arrived here in May just two weeks after we moved. He has been able to help out, but I feel terrible that his summer vacation is interrupted because I can’t do anything. I haven’t even been well enough to join him and John for dinner out. We tried once and they had to bring me right back home in 45 minutes.
I’m lying in bed watching summer pass by once again.
I’ve been trying to keep our company going while tackling illness, and I’m so burned out and sick, I’m barely functioning. I can’t stop working because I need the money to pay for my medical appointments and medicine.
In June, I dropped NT$50,000 on the loading dose of Cosentyx that my rheumy SHOULD HAVE GIVEN ME IN MARCH. Isn’t that wild? That he waited three months before issuing the meds I should’ve had right from the start?
I should be home in Canada right now with my parents, but I’m not well enough to fly and my flights this summer were cancelled. I’m now tackling a fourth year away from them. It has become unbearable.
All I can do is hold on and wait until things start to improve. I’m thinking it might be a little better by October, but who knows? I was past my breaking point in May, which gives you an idea of how I’m handling things. At least I’ve been through this before and have coping techniques in place to try and relieve that stress.
I’m looking forward to getting out of my house and having a look around the neighborhood. The idea that I don’t know what’s in my neighborhood after two months here seems ridiculous, but it’s something to look forward to.
This post has been a drag, but it’s a drag to live with chronic illness. At least I have this site where I can tell the truth. I know I’m not alone.