Category: health adventure

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

Posted on by Grayson

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

Posted on by Grayson

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!

Ruminations Before My COVID-19 Test

Posted on by Grayson

I’ve been having COVID-19 symptoms for about a week now, though part of that is hindsight. Last week, I began having chills that progressed into a runny nose, sore throat, body aches, fatigue, minor cough, and fever. The local infectious disease peeps have determined that I need to be tested, and I’m definitely grateful for that!

I go tomorrow at 11:30 am for my nasal swab. I’ve heard it’s not very comfortable, so I’m not looking forward to it by any means.

I am scared. I’m scared of what the test might mean with either result. I’m worried about what else might be going on, should the test be negative…

But I’m terrified for what it might mean if it’s positive.

My symptoms haven’t been as severe as many people’s, but I think I know why. Rheumatologists and other doctors have hypothesized that kineret might help eliminate the cytokine storm COVID-19 causes that is often fatal. Why? Well, Macrophage Activation Syndrome is essentially a similar bodily reaction, and kineret treats that. Sobi, the drug’s manufacturer is running a clinical study to test this out. Throughout this time of being ill, I’ve continued to do my shot, and I really feel as though it’s made a major difference.

My partner doesn’t have my medication and has some different symptoms, including a nasty cough that we’re managing with a suppressant. I’m concerned about their symptoms and hope they’re able to get tested soon, too.

Despite all the change and turmoil I’ve been through in the past year, it really has been the best year. I’ve figured out who I am – including starting testosterone on January 23rd to be more masculine and affirm my gender identity. I learned more about how to care for my body and mind. I started a job I enjoy, despite how emotionally draining and underpaid it is. Hell, I started playing hockey, too, and I love every single minute of it. And, saving the best for last, I found a partner who sees me for me, laughs at my jokes, and whom I adore.

All of that makes this fear of what might happen more… salient. I know I’m not that healthy in the eyes of ableds and would likely be on the chopping block, should the US resemble Italy anytime soon. I know my life wouldn’t be as valuable to the economy or providers, etc… But I also know that I feel like I’ve just started truly living it as myself. To have it threatened because of capitalism and a pandemic is terrifying.

Most of all, I’m afraid for my partner. If something happens to me, I know they’ll be okay but they won’t be happy. If I’m sick, they’re guaranteed to be, too. What if they get really sick? I have seen these thoughts cross their mind several times lately and their anxiety level is so high.

For the first time, I’m far less afraid of death. Don’t get me wrong – I’m still horrified by the idea of dying, but it’s less panic-inducing when the concern is related to Ian or my sister and her kids.

It’s almost cathartic to know I have so much to lose now when it often didn’t feel that way before.

For now, all I can do is try to get some sleep tonight. It’s worse than sleeping as a kid before Christmas, especially given the level of enthusiasm I have for this nasal swab.

Stay safe, friends, and take this pandemic seriously.