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October 12, 2022

Happy World Arthritis Day!

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We’re a month out from the 29th birthday of my dear old friend Arthur - what I’ve called my arthritis since being diagnosed in the summer of 1994. Here’s a bit about my journey:

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Graveson Skullz (he/they) @GraysonGoal
It's #WorldArthritisDay again. Here's a bit about my journey with Systemic Juvenile Idiopathic Arthritis (SJIA), also known as juvenile-onset Still's Disease.
World Arthritis Day
My main symptoms at this time were:
Fatigue (so much so that it countered my then-undiagnosed ADHD)
Fevers that were often low-grade but could quickly spike, leading to convulsions
An itchy, salmon-colored rash that appeared primarily in the evening and would be gone by morning appointments
So much pain

I was quickly unable to attend most of Kindergarten, as kids with unidentified rashes and these other symptoms were viewed as a possible health risk.
This photo of me was taken on September 26, 1993. I had just started Kindergarten at an immersion school where I loved learning Japanese, singing constantly, and spending time with my friends.

This is the last photo of me before I got intensely ill in mid-November of that year.
By early 1994, doctors had run through a number of possible differential diagnoses that didn't pan out. At this point, with giant question marks in their minds, they landed on leukemia.

With a few days until my sixth birthday, I was given 6 weeks to live. We were encouraged to start chemotherapy and radiation ASAP to possibly extend that timeline. We didn't.

My mother and I spent evenings and weekends at libraries, looking to find what was actually the culprit. Once we stumbled across Systemic Juvenile Idiopathic Arthritis (SJIA) - or Still's Disease - we began to collect evidence, including rash locations, pain levels, photos,  and even video.

That got us the referral to the rheumatologist and, finally, a concrete diagnosis.
3:15 PM ∙ Oct 12, 2022
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Graveson Skullz (he/they) @GraysonGoal
Since the first-step therapy at the time was non-steroidal anti-inflammatory drugs (NSAIDs), I was started on liquid naproxen and moved to OTC Aleve. The damage that did to my GI system over the years cannot be understated.

Once the NSAID did not put me into remission, the doctor recommended the next step therapy for 1994 -  methotrexate.

My mother was already at a rough spot with her mental health, but having a provider recommend a medication that was also used for cancer when we knew I didn't have cancer led her to decide to pull me out of all medical care. Equipped with medical textbooks from the 1930s, she believed that she could handle my health issues on her own.

I didn't see any healthcare providers from age 7 
until I was 21 and a senior in college.
I tried to access one of the FDA-approved medications through my then-doctor. The practice was adamant that I would have a terrible result, especially as an adult since many of these medications are geared towards the pediatric rheumatology population.

In 2015, I changed insurance to see the best rheumy I've ever had. Once I started on a daily injection called Kineret / anakinra (an interleukin-1 receptor antagonist), my sedimentation rate (a way to measure inflammation using blood draws) dropped immensely.
At 21 in 2010, I had to pursue a re-diagnosis as my medical records had all been destroyed due to the lack of engagement from my mother and moving through various record-keeping systems.

That also meant that I got to deal with step therapy - also called fail-first therapy.

Between the fall of 2010 and the summer of 2015, I tried the following medications which all failed me as they are not FDA-approved for SJIA:
Plaquenil / hydroxychloroquine
Methotrexate (pills)
Humira / adalimumab
Enbrel / etanercept
Methotrexate (injection)
Arava / leflunomide 
Cimzia / certolizumab
Instead of being in pain all of the time from my arthritis, I was able to figure out that there were more health issues happening, leading to my diagnosis of a number of things including hypermobile Ehlers Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS), and a probably Postural Orthostatic Tachycardia Syndrome (POTS) diagnosis. (Additional testing for POTS is in December at Cleveland Clinic). 

Due to EDS, I had to learn how to 
move my body all over again. As a 
part of my growing strength, I was 
given the okay to take dancing 
classes and then start playing my 
first sport - hockey (which I miss 
dearly due to COVID-19).
3:15 PM ∙ Oct 12, 2022
Twitter avatar for @GraysonGoal
Graveson Skullz (he/they) @GraysonGoal
My health issues have been sucky to handle. I've been someone who never felt like I accomplished much. Thankfully, I've learned that's just my ADHD talking - which btw is back in full force now that I'm an adult and have my fatigue mostly controlled!

I give talks around the world on illness, as workshops, presentations, and interviews on radio stations. I helped start the conversation about disability within sexual education spaces with my website Chronic Sex, where I continue to help folks process and work on their intimate lives. I figured out who I am and have worked to embody that dope human in new ways, starting testosterone and undergoing masculinizing top surgery.

Most of all, I found
my family.
There's one catchphrase that I've kept in mind for the last 14 years from my late friend Laura, who passed away in 2012 from complications related to her Still's Disease and an infection:

"Life with Still's is still living."
3:15 PM ∙ Oct 12, 2022

Recent Arthritis News

World Arthritis Day: Does Weather Actually Impact the Pain Suffered by Arthritis Patients? by TWC India [BTW the answer is yes.]

How arthritis patients and chronic illness sufferers can be their own health advocates with Dr. Amanda Nelson (video)

Exercise increases the body’s own ‘cannabis-like' substance which reduces chronic inflammation from the University of Nottingham

Arthritis Foundation Releases its First-Ever Report on Juvenile Arthritis

Precision medicine: the precision gap in rheumatic disease

Scientists have identified a protein known as sulfatase‑2 that plays a critical role in the damage caused by rheumatoid arthritis

My Favorite Resources

  • Childhood Arthritis and Rheumatology Research Alliance (CARRA)

  • Creaky Joints

  • Purple Playas Foundation

  • Systemic Autoinflammatory Disease (SAID) Support

  • The Autoimmune Association

  • The Autoinflammatory Alliance

  • The SJIA Foundation

  • US Pain Foundation


Thanks for reading! If you have feedback or anything you’d like to share, feel free to reach out to me on social media or by email (all linked here).

Love your face!
Grayson

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