Category: health adventure

5 Months After Approval, I Still Don’t Have Ilaris – And I’m Not Okay

Posted on by Grayson

I’m an expert on Still’s Disease, both as a researcher and as someone living with it since childhood.

Despite this, I’ve spent the past six months fighting to access the biologic medication that keeps my rare autoinflammatory disease in check. Short of explaining all the ways Still’s Disease is terrifying, this medication literally keeps me both stable and alive.

After six month of fighting, I still don’t have it.

My uncontrolled disease is running rampant. The excess inflammation is worsening the bulging cervical discs I have, causing immense pain on top of endless frustration.

Between a self-funded insurance plan through my spouse’s employer, the plan’s administrator Employee Benefits Service Center, delays from the pharmacy benefit manager TrueScripts, and a lack of urgency from those with the power to help, I may not receive my medication before traveling to Spain next week for the OMERACT meeting — a meeting focused on improving health outcomes for rheumatology patients.

Despite my relentless efforts to navigate the system, I’ve been met with silence, slow responses, shifting responsibility, and even apathy.

This never should’ve happened in the first place.

I was previously receiving Ilaris from the Novartis patient assistance program. They ended these programs for anyone with private insurance at the end of 2024, leaving countless patients like me without a safety net and in excruciatingly declining physical and emotional health.

If someone like me — someone who knows the disease, the system, how to advocate — has this much trouble accessing essential care, I can’t help but wonder how many others are quietly struggling or have been forced to switch back to a medication that was not effective. Despite how people view me as positively stubborn, I’ve been struggling with feeling forgotten, dismissed, and being too exhausted or in pain to handle all of this.

I don’t know what else to do anymore. The hundreds of hours I’ve spent coordinating between my provider, the PBM, the insurance plan administrators, and even my spouse’s HR representative all feel like they’ve been for nothing.

What I do know is that this isn’t right. This system must change, and it has to prioritize people’s lives over profits.

Patients deserve better. I deserve better — especially when the consequences of not having medication can be fatal.

If I die because of this ongoing lack of treatment, scatter my body parts in front of all these company’s locations.

Note: Everything I share here reflects my personal experience and views — not those of my employers, collaborators, or any organizations I am affiliated with. I’m speaking for myself, sharing a deeply real, painful, and ongoing struggle that has taken an immense toll on my health, my hope, and the joy I had for this year.

Where I’ve Been

Posted on by Grayson

Many of you may know that I have hypermobile Ehlers Danlos Syndrome (hEDS). For the last 6 months, I’ve been dealing with a complication of this condition, called Craniocervical instability (CCI).
May be an image of text that says 'Hyperextension Hyperflexion KGEE Sprain or strain of cervical tissues'
Image description: An image of neck hyperextension and hyperflexion, which can both lead to sprain or strain of cervical (neck) tissues. (source)

My neck, my legs, and my pain levels

In December, I wound up with what we figured was a pinched nerve. One of my healthcare providers told me this was just unprocessed trauma showing up in my body. It took me switching to a new primary care provider who also has EDS for my neck issues to be taken seriously.

I had an MRI on April 1st, which showed that I now have two bulging discs in my neck.

Complicating matters is that it’s taken FIVE MONTHS for my insurance to agree to cover a medication for my Still’s Disease. I don’t have it yet, but hopefully I will this next week. They don’t want to cover this medication because it’s expensive. It’s also one of only 3 medications that treats this rare disease. I’ve already been on one of the others which stopped being as effective for me after having been on it for nearly a decade.

The extra inflammation in my body because of not having my medication is making my neck MUCH worse, to the point where the discs are booping my spinal cord. This happens occasionally, but more often than before. On top of the nerve pain this causes — which can’t be touched by any pain medication — my body is less coordinated than normal. I drop things a lot and run into things more often. The nerves in my back begin to fire all at once if I get overheated or do too much without taking a break, especially if I’m using my arms a lot. Like I said, there’s no way to attack that pain with medications.

The only way out of it is through. Sometimes that means sitting down for 5 minutes or writhing in pain for an hour.

 

Surgery isn’t really an option – yet

Because of having CCI and hEDS, surgery to fix this won’t fix the underlying issue. I also have Mast Cell Activation Syndrome, which reacted so badly with general anesthesia when I had top surgery that I nearly died.

So, surgery isn’t an option… for now. It won’t be until this gets completely unsustainable. And that’s if I could find a surgeon who would be knowledgeable about my conditions and willing to take on the risks.

I’m working with my EDS-focused physical therapist and my primary care doctor on what to do now. CCI often benefits from physical therapy. I’m not able to see my EDS PT as often as I need to, though. I also see her virtually, which is usually great. For this, though, I need to find someone to see in person. That person needs to know how to handle CCI and be willing to learn about EDS. Otherwise, I’m putting myself at risk of further injury.

 

How I’m doing

Again, I’m dealing with a lot of pain. I’ve had chronic pain since I was 5, but this is a whole different ball game. With my neck being unstable already and the lack of access to my medication, I already wasn’t going out and doing a lot. Now with the bulging discs, though, I have to be very mindful of how I support my neck. I generally have a maximum of 2 hours of sitting upright in me before I have to rest and make sure that I’m supporting my neck by using a neck brace, propping up my neck with my hands, laying down, or leaning back against a chair or couch.

This is also causing a lot of muscle spasms. I have to roll out my leg muscles every single night before I go to be on top of taking a muscle relaxer. This has eased up slightly with starting a number of vitamin supplements, but is still an ongoing issue. If I don’t do these things, my leg muscles lock up and I can’t sleep.

I’m… very tired. I’m tired of fighting insurance on getting my medication covered. This is something they said they would do back on January 30, but keep putting roadblocks in our way. I’m exhausted from having to constantly think through what I want to do and consider if it will cause my body issues. Though, I’m also just as frustrated about trying to do things and not being able to or causing myself pain in the process.

A photo of Grayson face-on. He is sitting on a couch with his left arm supporting his neck.
Image description: A photo of Grayson face-on. He is sitting on a couch with his left arm supporting his neck.

I’m very grateful to have the best two helper dogs in Hank and Dean.

Hank (left) and Dean (right) look out the front window of our house while on the couch. They are black-and-white smaller sized mixed breed dogs.
Image description: Hank (left) and Dean (right) look out the front window of our house while on the couch. They are black-and-white smaller sized mixed breed dogs.

I’m also honestly feeling worried about my spouse. This is a lot of stuff all at once. The balance between being a partner and a caregiver is a hard one to deal with. It’s overwhelming for me, absolutely. I don’t have the added helplessness of not being able to do anything about it.

 

Moving forward

We’re heading to Spain in a few weeks. I’ll be attending the 2025 OMERACT conference.

I’m honestly not sure how traveling will go, let alone attending sessions.

Thankfully, I’ll be among friends and world-renowned rheumatologists. It’s probably one of the best places to be with how my body is right now.

If I know you in real life, don’t stop inviting me to things. I can’t guarantee I’ll be able to attend anything, really. But, I still appreciate being included.

If I don’t know you in real life? IDK. Send happy thoughts my way, maybe?

graphic with the title 'orthostatic hypertension' featuring an illustration of a dizzy person with a heart on their shirt

Orthostatic Hypertension

Posted on by Grayson

Back in December, I had a long day of tests at the Cleveland Clinic. After speaking again with the provider who ordered these tests, she shared that, while she did not think I had POTS specifically, she did think I had another, less common form of dysautonomia.

 

Orthostatic Hypertension

Orthostatic hypertension is when someone’s blood pressure suddenly shoots up when they stand. Generally, this requires a rise in your systolic BP (the top number) of at least 20 mmHG. We don’t know what causes this, but some conditions that are related are anorexia, inflammation of the aorta, narrowing of the kidney arteries, and type 2 diabetes.

According to a 2008 study, this condition affects just over 1% of the population. This condition isn’t super well known, meaning that there aren’t necessarily concrete treatment regimens for it.

Now, does this mean I don’t have POTS? Actually, no! People can have both. Some providers would still cause this POTS, but specify that it is hypertensive. There’s not a lot of agreement on how to diagnose or label this correctly honestly. Furthermore, this is a form of both orthostatic intolerance and dysautonomia, so it’s still in the same genre. To me, orthostatic hypertension makes far more sense as a diagnosis based on my symptoms and labs – and that’s true looking back a ways.

 

Cardiology + Treatment

Ritalin – which I’m on for my ADHD – can also help treat forms of orthostatic intolerance. We see this specifically in conditions like POTS. However, we know it can also cause hypertension on its own. So can testosterone.

Thankfully, the cardiologist that I saw is amazing:

I immediately was put at ease. I can’t think well without my Ritalin. Going off testosterone would literally cause an uptick in my chronic pain. Plus, I’d feel awful from experiencing the effects of estrogen again. There’s no way I was going to budge on these things anyway.

So, we’re starting with a medication to lower blood pressure called doxazosin. There is some evidence to suggest that this is a helpful medication for this condition. This medication is also an alpha-adrenergic blocking agent, a class of medications that is used to treat PTSD and nightmares.

I’ve also stopped my increased salt pills and diet, something that a previous provider recommended when he gave me a differential diagnosis of POTS based on symptoms and comorbidities. (No, he didn’t want to put me through a tilt table test at the time. I’m annoyed I didn’t press further.)

I’m testing my blood pressure at random times to be able to show how things are going at my next appointment. So far, though, I’ve had a general lowering in my systolic numbers which is great!

 

Outlook

Dean and Hank - black and white mix dogs - look out a window while leaning on a couch
Dean and Hank watching the UPS dude grab my Kineret this morning

Well, since this condition isn’t well-known, it’s not as well-studied as I’d like. Orthostatic hypertension is associated with higher risks of heart attack, stroke, and early death. Obviously, the goal is to not have those things happen. If we decide this medication isn’t working as well as we want at the end of this trial period, we’ll re-evaluate medications and see what else we might need to do.

I’m paying more attention to my both my pain and stress levels, as these can send blood pressure soaring. I am historically awful at balancing both of these things. Being in the middle of countries around the globe attempting to pass a record-setting number of transphobic legislation is not helping. This is part of why we talk about how stress kills marginalized and underrepresented folks.

I also had to fight all year to re-obtain access to Kineret after an insurance switch. (It’s been a whole thing.) My month-long shipment of meds arrived today. That along with having re-started physical therapy will both be beneficial.

If I could share one thing with folks, it’s this: get a tilt table test done before you accept a differential diagnosis of POTS. I’m kicking myself for taking steps that would’ve been great for POTS but probably ultimately will have taken years off my life because I received incorrect information. I don’t want that to happen to other people.

Grayson and the Very Bad No Good Day

Posted on by Grayson

grayson and the very bad no good day

In November, I visited an allergist at Cincinnati Children’s Hospital. It felt weird, but he had offered to see me after I reached out looking for MCAS-aware doctors in the state. He shared that he saw adults too, so I felt okay going there.

This was the first medical appointment my partner got to come with me to, so I was nervous about that. I wasn’t nervous about this doctor, though… and I should’ve been.

 

The Appointment

Dr. A was running behind, which I wasn’t too worried about. I’d set up the appointment at essentially the end of the day. I was getting tired, though, which usually brings a decent amount of brain fog with it. Add to that how I hadn’t prepared as thoroughly as I generally do for appointments, and I was off my game.

When Dr. A came in, he did so without really saying hi. That felt weird, but I chalked it up to how long his day had been and tried to shake it off.

That was, until he dug into asking why I think I have Mast Cell Activation Syndrome.

Let’s be clear: MCAS has been the differential diagnosis we’ve been running off of for years to explain my allergies. Tests show up with mixed results, and we know that the tests aren’t great and miss many people – hence treating based on believing this is MCAS. Based on my treatments, reactions, and even my comorbidities, this is the right diagnosis.

He told me things that are categorically false about this condition. He also told me that my reaction to anesthesia during top surgery wasn’t typical of MCAS. Since they didn’t run labs while helping my body to not yeet itself into the great beyond, he wasn’t going to take the views of the medical team who was treating me seriously.

“They still should have run lab tests.”

We wound up with him saying I have chronic hives. It’s a woefully incomplete and inaccurate picture of my condition, especially as it leaves out the various other body systems involved. Then again, I guess I can’t expect much when he didn’t actually ask about any of my symptoms. No general questions about what brought me in or anything along the lines of getting to know who I am.

It was like Dr. A had no bedside manner. To prove it, he began to run the Beighton Score test for Ehlers Danlos Syndrome (EDS) on me without warning me what he was going to do. My joints were incredibly unhappy. We also know that score isn’t accurate for a number of reasons.

After then asking me to hop up onto the exam table, he was absolutely shocked that I was working in public health. He seemed to assume I knew nothing about healthcare at all. Perhaps the appointment would’ve gone better if I had pulled out my degrees and experiences beforehand.

After asking about a possible referral to a POTS specialist if he knew one, I was quizzed on what I do to help with this condition. When I didn’t list exercise, I got the “Well, ya know, POTS is something best treated with exercise” line.

I suppose it was a mistake to even try, but asking him if he was aware whether or not the rheumatologists at CC also saw adult SJIA patients was met with incredulity. “Why in the world would you need to see a pediatric rheumatologist?” Um, IDK, if I went into MAS?

When Dr. A left the room, I turned to look at my partner. We were both completely floored at how I was treated. We talked about just finding a new allergist because I can’t do that again. With the holidays and a change in insurance as I start my new job, that’s been on hold slightly. This week, though, my goal is to try to get an appointment set up with someone closer – and closer to my level.

 

Unpacking

The whole experience was so frustrating. It felt like Dr. A had already made his mind up about me being a hypochondriac or attention seeker before he even saw me. I’m sure the fact that I am overweight, trans, and still often read as a young person added to the shit sundae I got shoveled into my face.

Hooray biases!

This visit meant taking the day off of work. We drove three hours one way to see this man. And, again, he offered to see me as opposed to answering my question and despite the fact that I had shared I lived multiple hours away.

That day was on par with a visit I had with an old primary I had in 2012. I’d gone in with that was clearly an abscess. This doctor, full of hubris, told me the abscess was a pimple. He mocked my pain, laughed about me being overdramatic (in his eyes), and then told me to go home and take my biologic. I had to get basic medical care from my at-the-time rheumatology nurse practitioner. She took me seriously and got me patched up.

 

Moving Forward

I have my first appointment with the new rheumatologist in two weeks. More in line with how I usually am, I spent today preparing forms and writing up my medical history. I’ve already started the process of having to prepare for ruin and heartache, as I should’ve done in November. It’s so frustrating how much more BS we have to go through that the people on the outside don’t recognize.

I have to say, though… To have my partner with me and have witnessed that treatment Dr. A flung my way – to know I’m not gaslighting myself here? That alone has been priceless. As we talked about it today, my partner is coming with me to my rheumatology appointment as well.

I don’t think I’ve ever had someone in my life who has cared that much. It’s so nice to feel like I’m half of a team, instead of dealing with all of this on my own.

Grayson (right) and their partner (left)

Reflections on A Wild Year

Posted on by Grayson

The past few years have been wild for all of us. The end of 2020 was difficult, hard, and frustrating. Because of that – and being so ridiculously busy at the time – I didn’t do my usual end-of-year post. With so much having changed for me this year, I wanted to make sure to do one this year.

reflections on a wild year

 

 

Wrapping Up 2020

November saw Arthur turn 27. I honestly don’t know that I would’ve ever thought I’d reach this point. The fact that I have is a testament to better education around SJIA and, of course, biologics. It’s interesting, though, as I know there is a whole new generation of aging juvenile arthritis patients. I think we’re going to see a whole new era of figuring out exactly what these conditions – and their treatments – do long-term.

At some point, I started to stream games on Twitch. I haven’t in a bit, but if you enjoy watching games, come follow! I hope to get back to it soon.

In December 2020, I had my lowest sed rate ever. After five and a half years on Kineret, I’m still surprised at how effective it is. Obviously, other things I do in life impact that number, too. I know that a lot of my lifestyle impact was less stress than I’d had in a while. It’s weird to say that when, a year later, we’re still in a pandemic… but it’s true. I had finished up a number of projects, but that’s not the only reasons for less stress.

Last September, I met someone on Taimi, a dating app specifically for LGBTQ+ folks. They lived in Ohio and I was in Wisconsin, so neither of us expected too much. As someone who hasn’t been great at long-distance relationships, though, I learned that having both people dedicated makes a huge difference. A month later, we were planning a weekend away together. After working in public health starting in April, I took multiple days off at the beginning of December to go meet my soulmate in the woods. We hiked and explored the city they’ve lived in for years. When it came time to come home, I hated every second of the 9-hour drive back.

 

2021

Towards the beginning of 2021, my friend Iris Zink released a book called Sex-Interrupted: Igniting Intimacy While Living With Illness or Disability. I wrote some of the appendices around LGBTQ+ folks. While I’m obviously biased, I adore this book so much.

January saw the CDC interviewing me and my colleagues around the work we were doing around type 2 diabetes prevention. On top of that, I got to join an amazing psychology collaborative focused on trans folks. I also got to give perhaps the most fun presentation ever for a Planned Parenthood conference.

Neurodiversity and sex for muggles - Grayson tapping a wand near a cup of soda; he is wearing a white button up shirt with a ravenclaw tie

Yes, I took a moment in the beginning to tell everyone JKR can kiss my trans ass.

Unfortunately, my partner’s father passed away shortly thereafter. I was able to take some time off work and go be with and meet the family during that time. While it was less than ideal, their mom really liked me. So did both of her dogs and my partner’s dogs.

Grayson is surrounded by four dogs on a bed and his hand can be seen petting one; his partner sits in a chair at a desk

In March, I got to edit one of Governor Evers’ proclamations. They didn’t keep all of my edits. That said, I pushed back on unnecessarily gendered language. Then, in June, Evers issued an Executive Order to require gender-neutral language.

I went to visit my partner for their birthday. We went to the Cincinnati Zoo, which meant I got to finally meet Fiona!

Grayson and Fiona the Hippo looking at each other

I also got my first COVID-19 vaccine.

In April, SheVibe turned me into a sex ed superhero. Like, you can literally get trading cards of me and a ton of my friends. Monica Lewinsky said I was super smart on Twitter. Oh! And I got my second Pfizer shot.

My birthday was actually the nicest one I’ve ever had. A ton of my friends hopped on a video call, meaning I got to introduce them all to each other. Some of us played virtual games, too. It was amazing.

May brought the 7th anniversary of the last day that I talked with my mother. Cutting contact with her was the scariest thing I’ve ever done… but it was also the most rewarding.

Also, I got probably the best haircut.

Gray sticks his tongue out; he has a fade and a short haircut with a small Prince-like swoop on one side

June brought me an official ADHD diagnosis and access to medication. It’s made managing my ADHD so much better. Fun fact: ADHD often gets worse for folks going through menopause and through puberty. When someone is transitioning and taking testosterone, they go through both at the same time.

It was an interesting year before the meds, but it made for good times in presenting on disability in the workspace for Thomas Jefferson University.

Picture of Gray, McGravin, and Hank and Dean with the doggos looking mostly at the camera

I also got to go with my partner, their mom, and their aunt up to upstate New York. I met the extended family, hiked up a mountain, and even kayaked for the first time!

Grayson sitting in a two-person kayak on the shore

Over the spring and summer, I began to play Dungeons and Dragons with friends as a part of an initiative from the Global Healthy Living Foundation. The Dungeons and Diagnoses podcast was a ridiculous amount of fun.

Also, despite never being someone who drew a lot, D&D helped me get a lot better at that. I tried to draw every time we played. Here’s a non-D&D drawing I did that wasn’t horrible:

drawing of a red panda

Earlier in the year, my partner adopted a red panda for me at the Columbus Zoo. We’d gone to see the pandas back in January, too, so it was extra special.

I went hiking a bunch in Madison over the summer, catching cool photos like this one.

Lone monarch butterfly on some purple ish flowers

In July, I had masculinizing top surgery. It almost killed me. Still, it was one of the best decisions I’ve ever made. Part of me knew I’d be okay in the end, because the date I was offered was Laura’s birthday.

Recovery sucked but I won a contest and got some goodies from one of my favorite Star Trek peeps.

By the time August rolled around, I had all of my things packed and moved to Ohio.

Hank lifting his face in front of Grav with Dean's face visible in the background

Needless to say, Hank and Dean were both ecstatic.

By the time Halloween rolled around, we were moving into our own house. I cannot believe this is my bathroom:

A claw foot tub by windows with sheer white curtains

In November, I got my COVID booster shot. I wrote up what it’s been like to be on testosterone for the last 21 months.

I also left my job in public health. As much as I loved it, there was a lot of stress involved due to issues outside of my team. I needed something that would give me more joy, fewer frazzled days, and lead to a little more calm in my life.

I recently started with a company called Included Health, where I work as a Care Coordinator for other LGBTQ+ folks.

 

Things I Did Throughout The Year

Top Surgery Almost Killed Me

Posted on by Grayson

Content note: surgery, death

top surgery almost killed me (and I wouldn't change a thing) - photo of a mast cell releasing histamine

If you follow my personal Twitter account, you know that I had masculinizing top surgery on July 6, 2021. While I’ve shared a good amount there about my journey, I have wanted to write up a more detailed post about this for a while. Mortality isn’t something that I have handled super well historically, though, so it’s taken longer for me to get here than I’d hoped.

Read more on Chronic Sex

Reflection on my lowest sed rate ever

Posted on by Grayson

My sed rate today was FIVE. That is the lowest it has EVER been since it was tracked starting in November 1993.

(For those outside immune system things, sed rate is a way to measure inflammation in the body. Normal results are between 0-20.)

I haven’t updated this graph in a while, but this is my sed rate from 2010 to 2017.

line graph of sed rates from 2010-2017 showing markers in the mid20s to high-40s until 2015 when it drops to normal levels

Yes, I still keep an excel file with my labs because I’m a nerd.

I started Kineret the last day of July 2015, and this graph clearly demonstrates how integral that medication has been for me.

I had to switch insurances and rheumatologists to get on this med since my previous doc wasn’t treating me for SJIA. Instead, they were treating me for polyarticular. It’s clear that some of the things we did helped because, yes, I have always had multiple joints involved. However, the medications weren’t targeting the right areas on their own.

That dip in 2012 is when I was on Enbrel and Arava. I felt like shit all the time, and the Arava quickly began damaging my liver. It had gotten so bad quickly that I had to stop it immediately. We had already tried methotrexate – twice – and I couldn’t tolerate it. I stuck with Enbrel for a while as I tried to get my fibro under control, but changed in early 2014 to Cimzia which clearly didn’t do much of anything.

None of that is even comparable to being a kid and having a rate in the 60-80 range regularly. No wonder I was hurting all the time, especially without treatment.

I still get enraged here and there at my previous doc. She refused to try Kineret with me, despite me bringing in case studies, journal articles, and personal accounts. Frankly, she wasn’t willing to entertain any of the SJIA meds because most of the research was on kids. [Insert snarky comment about how we need research on adults with SJIA because I know I’m not alone here.]

Old doc and I were on a research call together a few weeks ago. I really wish there had been an opportunity to call out this misstep without names. Alas, there wasn’t – and I’m trying to do better at being professional. I suffered for nearly three years though. I absolutely could have easily died from my SJIA during that time, let alone complications or my mental health.

For now, I’ll happily celebrate this low level of inflammation and consider writing my old doc to help her do better with future patients.

Ruminations on 27 Years of SJIA

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I promise I will have more posts from the American College of Rheumatology conference soon. I’m working on disseminating the information I learned.

When I was 5 years old, in the middle of November 1993, my SJIA hit. November 14th was the day that my family recognized the symptoms. We’ll never know for sure if this is exactly when the SJIA started up, but having this day as a ‘birthday’ for Arthur has been comforting for me.

When I started this site, my focus was really to create a space where I unpacked my health. From SJIA to the PTSD that was finally diagnosed in 2012 and more, sharing my personal journey was something that I needed. Having an outlet helped me not only explain my condition to my ex, but to friends, family, and a wider audience. This has brought me so many opportunities, from conferences to work to friendships.

Over the years, my focus has bounced around from research to relationships to healthcare. I often point out that I’ve gone from a literal sophomore in college to who I am now. All of these subjects are pieces of the problem patients face. There is no one issue we have to fix, but whole systems and ways of thinking.

I’ve also come to experience the world very differently than when I started. I was in 24/7 pain and living with my mother. Working three jobs to get through college wasn’t easy. Neither was going to graduate school with newer, then-undiagnosed conditions. I’ve also gone from no medication to failing several. Finally, over the last five years, I’ve been stable on Kineret.

The last two years have been… rough, from my divorce to moving multiple times to whatever this year has been. Usually, I try to celebrate Arthur’s birthday, marking the occasion with cake or something. This year, I don’t feel the same. 2020 has aged me in the same way it has many of us. I don’t feel like celebrating.

Part of that is absolutely related to my disease activity. My SJIA has been under control for a while. I finally have my pain under control, between my SJIA, hypermobility, and being on testosterone. I’m in a good place, and it feels weird to dwell on times when I wasn’t. That’s definitely a weird thing to acknowledge, but I know it’s true.

So, here’s to another trip around the sun with you, Arthur. It’s been weird.

Test Came Back Negative

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I know a number of people were really concerned about me the last few days due to me having to get a COVID-19 test. My partner and I both came back negative.

As much as I’m rejoicing from that right now, it also has me concerned.

First of all, the tests have been yielding a number of false negatives. Secondly, if not COVID-19, then what was causing our symptoms?

My partner has been told not to work – even remotely – until they have been symptom-free for 24 hours. That hasn’t happened yet. Their cough is only ceasing with cough suppressants and their fever continues to come back at least twice daily.

As for me? My symptoms are mostly gone. I’m still having a fever every so often. I’m also dealing with some shortness of breath and lightheadedness. Honestly, it’s hard to tell if this is my normal body stuff or acute stuff at this point. All I can do is stay vigilant, I guess.

I’ve gotten incredibly stir crazy. The lack of IRL interactions with folx is really difficult now that I’ve rediscovered my social butterfly abilities. That just means it’s time to have a Netflix watch party with some of my hockey pals, I suppose.

Stay safe!

How I Got A COVID-19 Test

Posted on by Grayson

Friends, it’s been nearly twelve hours and my nose still hurts.

As I talked about in my last post, I developed symptoms around the 10th-12th. During this time, I messaged my doctor on mychart and asked what the protocol was for getting tested, just in case. By the evening on the 13th, I was pretty convinced that COVID-19 would explain my symptoms but waited on calling.

On the 18th, I called my doctor’s office and had a nurse take notes on my symptoms and possible exposure. She passed that along to the infectious disease team who evaluated my case. They called me back around 2 pm on the 19th, despite being told it could take up to 72 hours. They scheduled me for an appointment today at 11:30.

The Test

I was told to wear a mask into the clinic, so I put on my vogmask and headed to my appointment. Upon arrival, I filled out a form with my symptoms, the date of my last flu shot, and any recent travel. The nurse came up and got me and went through my symptoms. Then, it was time to get down and dirty.

The COVID-19 test is similar to the flu test where they take a swab from your nasopharynx. That means they stick a long Q-tip incredibly far up your nose. Then they have to twist the Q-tip around for ten seconds.

illustration of a nasal swab
Source: https://www.youtube.com/watch?v=DVJNWefmHjE

All I could think about was how pushing too far is a way to kill someone.

It burned and hurt. I can still smell medical smell way up my nose. My ears and throat weren’t pleased, either.

What Now?

I’ll know the answers within 4-5 days. Honestly, I’m leaving a little wiggle room with that amount of time, though, since we’ve officially hit over 200 cases.

Fingers crossed!