living with rheumatoid arthritis

i woke up this morning crying from the pain.

my knee replacement

i haven’t done that in quite a long time.

i apologize if you are here for the food and travel. today’s writing is going to be a little bit different. i need to talk about this for a little bit, if that is okay. i am always reluctant to talk about my RA in a space like this because i never want it to be the thing that defines me.

i’ve tried to rest this week knowing i am flaring, but i still pushed myself to attend a few in-person meetings and a dinner. the thought of this ever affecting my friendships and work—the way it once did, fills me with dread. so i go to the meetings, and i attend the dinners.

just know if i am canceling on any of these things, i do it with great reluctance. it is very likely that i am in a tremendous amount of pain.

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i know i mentioned my rheumatoid arthritis quite a few posts back, and have been meaning to talk about it more—but one thing about me, is that i am very good at avoiding the things that i want to try and forget.

this isn’t going to be the story of my RA—that is going to be a much longer piece of writing. maybe many pieces of writing, we’ll see. this is more of a ‘this is where i am at right now’ kind of essay.

and please know—this isn’t a pity post or a woe-is-me kind of thing. i don’t need anyone to feel sorry for me. this is just my life, and sometimes i will talk about the hard parts. if you know me, you know i wear this pain well.

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life is full of swings and roundabouts. and from the outside—i live a wonderful, healthy, happy life. and yes, i am indeed living a wonderful, happy life. that is absolutely not a lie.

but ‘healthy’ all depends on what we deem as ‘healthy’, i suppose. i have been living with a gradually debilitating autoimmune disease called rheumatoid arthritis for well over 10 years now. although, you might not know it from social media.

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what is RA? here is the overview - a chronic inflammatory disorder usually first affecting small joints in the hands and feet.

in rheumatoid arthritis, the body's immune system attacks its own tissue, typically in the hands and feet, and then many other joints. in some people, the condition can damage body systems including the skin, eyes, lung, heart and blood vessels.

it affects joint linings, causing painful swelling. this may lead to bone erosion and joint deformity. fatigue, fever and loss of appetite also can be symptoms.

medicines, physical therapy, and surgery aim to control symptoms and prevent joint damage.

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you can see it in my hands. my knuckles are fused and bent. i can’t straighten my elbows fully, because they are also fused. my left wrist is fused solid and my right wrist has some movement, though not much.

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my left knee <3

i feel sorry for my poor knee sometimes. or i feel sorry for myself—like i am looking in from the outside or something. i feel bad for me, and this damn poorly knee.

my left knee had been getting worse and worse for years, but i still chose to ignore it. it was for sure the most painful of my joints, but i also knew it was the most serious. so of course, like i always do—i pretended like everything was okay and that the pain wasn’t too bad.

that was until i couldn’t stand the pain anymore. it was that bad and everything wasn’t okay.

one morning, after having an awful week of pain—i woke up and needed to go to the bathroom. mornings are always the worst for me, but this morning was something different. i couldn’t put any weight on my knee at all. i couldn’t walk. at all.

my husband assisted me to the bathroom.

i am a fiercely independent person at the best of times, but i had to submit to help on this day. and after this day, i knew things needed to change.

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i began a course of prednisone that was only meant to be for two weeks. this would hopefully knock down the awful flare i was currently in. i ended up taking this high dose of prednisone for two, years. that brought on many other complications including extremely fast weight gain, which in turn added more stress to my joints. it was awful, everything was awful.

imagine living inside a body that you hate because it is hurting you, and in turn not recognizing the person looking back at you, all because of this stupid disease. the resentment crept in. but again, i was very good at hiding it and pretending to everyone that i was okay with all of this stuff happening to my body. as long, as the pain was at bay.

everything felt out of my control, because it was.

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my total knee replacement was scheduled for january 10 2022, and it couldn’t have come soon enough. i hadn’t been able to walk more than two blocks in almost 7 years, which is crazy to even think about now, but back then that was my reality. my life is very different now.

i had to walk on my new knee as soon as i woke up from surgery, which was a very bizarre feeling.

but, for the first time in a long time—no knee pain! obviously i was on some very strong pain meds, which helped. but when i walked on my knee, there was no excruciating pain. i could walk!

8 months of intense PT and resting followed. i got back to life pretty quickly. this included being able to get back into the kitchen, and so @chloecooks___ took off even faster than it had been, and even more so—from then onwards. and of course, the supper clubs were back in full force! i was so happy.

my recovery

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anyway—cut to today. i woke up crying this morning. i went to bed in pain. i’m in pain again. not only my ankle, but i am flaring so badly at the moment, even my new knee is painful and stiff. i haven’t experienced pain here since before my surgery. life feels uncertain and very scary again.

what is going on with my body? i felt like i had a hold on everything.

i can barely put any weight on my right ankle and it has been getting worse over the past year or so. meaning, i am once again in excruciating pain. but, i hide it well. i’m an expert at that, you’ll see.

the less i speak about it, the more i am not the 'girl with arthritis’.

i have been able to suppress the fact that i have RA ever since my knee surgery, and seemingly live a very normal life.

my right ankle bore the brunt of the left knee deteriorating, for many years. and so my right ankle is now deteriorating very fast. more surgery is on the way this year, much to my dismay.

how will i be able to do my job? how will i host my supper clubs and pop-ups? if i have the ankle replacement that my ortho so desperately wants me to have, i cannot be weight-bearing for at least 8 weeks. i was able walk on my new knee straight way, it is required for optimal healing. this will be very different.

many questions, to which i do not have all the answers to yet.

i think i am about to embark on another AIP diet journey, to see if i can get back on the right track. i hate restriction, and believe that we should be able to consume everything is moderation. but, when needs must.

i must note that i take nothing for granted. i live an extremely full and abundant life with so many amazing, supportive friends and family. i have the most incredible husband that lives on this ever-evolving journey with me, and i could not be more grateful for his unwavering love.

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so this is me. a small insight into my life and only a little of my story. but this is me.

talk soon

xo