For the past five years, I felt like I was going to lose consciousness any time I was walking or standing. After a year of not passing out, I just tried to ignore the feelings of death and sit whenever possible.
I never strongly pursued autonomic testing, because I hadn’t heard of any appealing dysautonomia treatment options. While beta blockers can lower heart rate and blood pressure, they also can increase mast cell activation. IV fluids always lessen my overall symptoms, but my veins are difficult to stick and react very painfully to IVs. (Drinking water is not as effective.) My symptoms never outweighed the risks of a port or PICC line, a convenient way to deliver fluids and medications.
After autonomic testing, my new MCAS specialist recommended fludrocortisone, a medication that helps control the sodium and fluids, to address my “heavy” feeling, which I was beginning to recognize throughout the day thanks to the tilt table. On the internet, I read that fludrocortisone can raise your blood pressure. My blood pressure spikes when I stand, so I worried the medication would only make it worse. I decided to try it anyway.
My first agility competition on fludrocortisone seemed unremarkable at first. I sleepily walked the course and warmed up my poodle. When it was our turn, we crushed it, winning first place. Maybe a coincidence, I thought. I celebrated with my friends, but something felt off.
I COULD FEEL MY LEGS.
Remember how I didn’t know my legs were numb from the tilt table until I laid back down? I didn’t know I’d been running agility on numb legs until I took the fludrocortisone. My legs didn’t throb and swell afterwards. I leisurely visited with my friends. I took my first picture holding my dog while standing.
And then I realized Quixote and I had just qualified for the AKC National Agility Championship!
BUT WAIT, SO THIS WHOLE TIME I DIDN’T HAVE BLOOD IN MY LEGS?!
I squeezed my 11-year-old pup and fed him some extra chicken. Then I continued to fume.
SOOOO EVERYONE HAS BLOOD IN THEIR LEGS?! AND NOBODY TOLD ME WHAT IT FEELS LIKE! WHAT ELSE AM I MISSING?
Turns out, all organs like blood and oxygen. I had never considered low blood volume might be my problem. My blood pressure actually decreased, probably because my body had been overcompensating from hypovolemia. Over the next few weeks, I felt like I was learning to operate a new body. I really underestimated the impact of dysautonomia on my poop tube. My muscles still brace for pain when I go to the grocery store and I have to remind myself my strength has improved.
AND OH YEAH, TEAM QUIXOTE IS GOING TO THE AKC NATIONAL AGILITY CHAMPIONSHIP IN TULSA ON THURSDAY!
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May 2021 Update: MCAS remission eliminated my dysautonomia symptoms completely. Dr. Weinstock estimates MCAS accounts for 1/3 of POTS cases. MCAS can increase vasodilation and blood vessel permeability. While fludrocortisone was helpful, addressing MCAS was the key improving my circulation, reducing my heart rate, and lowering my blood pressure.
Agility competitors are encouraged to develop a warm-up routine to prepare themselves and their dogs physically and mentally for the course.
My routine with Quixote looks like this:
I walk into the building with a pocket full of cheese and hope. Quixote heels, smiling and looking up at me with loving adoration as we make our way to the practice jump.
Quixote waits patiently in a sit stay, as I set the jump bar to 8”. I release him, and he sails over the jump and into perfect sit recall. I reward him with a tiny ball of hand-warmed mozzarella. We repeat this four times in each direction.
We move closer to the ring entrance, so I can watch the other dogs, while Quixote runs figure 8s around my legs for pinches of cheese.
I start to feel dizzy, so I sit down even though all the other competitors are standing, and the floor covered in dog hair–I’m allergic to dogs, but I’m more allergic to people. Quixote squares up to me and sneezes in my face.
I worry I’m forgetting the course, so I stand back up to see over the gates. My blood pressure skyrockets. Immediately, I feel like I’m going to pass out and pee my pants, even though I just went the bathroom. I know the penalty for a dog peeing in the ring, but what happens if a human pees in the ring?
I sit back down and Quixote begins barking for attention. “High five, bow, spin,” I tell him, while handing out treats and questioning why I wake up at 6:30 am on Saturdays to get tormented by my immune system, my nervous system and a 10-pound poodle.
I feel like I’m dying. At this point, I’d rather pass out than forget the course, because at least then I might be unconscious and miss the collective gasp and murmur of the spectators. I forget to offer a hand for Quixote’s high fives, so he starts slapping me in the face for treats. I stand back up.
Quixote turns his back to me and starts smiling and wagging his white pom-pom at other handlers in hopes of better treats and attention. I am reminded that if I don’t focus on him, he’s going to publicly shame me in the ring by pretending I don’t exist.
“Quixote, you’re such a good boy!” I squeal, handing him a treat. My body is screaming, dumping chemicals in my bloodstream, and I know he can smell it. Unlike my service dog, he sometimes acts as if my disease contagious.
“You’re the BEST boy!” I exclaim, not knowing who I’m trying to convince, and stuff cheese into his mouth until the team before us nears the end of the course.
As I push through the metal gate and enter the ring, I disconnect from my body and focus entirely on his–four shaved paws, two almond eyes, and an eager tail. A deep, electronic voice commands, “GO!” and adrenaline surges through every cell in my body, knowing each foot placement and hand movement counts. As Quixote sails over the 5-foot A-frame and smashes the teeter totter, I race to direct the next obstacle. When I run out of breath to yell commands, I switch to clapping. When my legs weaken, I send him across the ring with an outstretched arm, just like we practice. In that one-minute run, there is no time process my pain or limitations.
To most spectators, I’m sure I look like the average, non-disabled competitor. They don’t notice my tremoring hands struggling to put the leash on Quixote when our run is done. Or the allergic welts from clapping. They don’t see the rashes from the parking lot sun or the weakness of my arm as I try to open my car door. They don’t see me collapsing on the seat or vomiting on the pavement, as the chemicals from my mast cells strangle my organs. They don’t see me shaking from chills and lying flat, trying to get blood back into my arms and legs.
I’m sure if they saw all that they’d say, “Why the hell do you do that to yourself?”
I compete in agility because overall it makes me feel better. Once the chemicals are dumped in my body and the inflammation has subsided, my body feels more comfortable. I am actually more reactive and injury prone when I don’t participate in agility with rest and accommodations.
More importantly, agility competitions are an immense source of joy and connection in my life. Dogs are amazing painkillers and comedians. Although my toy poodle howls at me when I make an error, the agility community loudly cheers me on no matter what. My agility friends help me move my crate, hold my dog, advocate for fragrance-free bathrooms, and ensure I am safe. They know I can’t stand for briefings and relay important information. They understand I have to save all my energy for those two one-minute runs. When I go home to rest for two days to heal my muscles and joints, I replay the videos of my runs and relive the joy and cheering all over again.
My body has changed a lot since I started competing in agility. My disabilities vary day to day. I haven’t overcome my disease; I’ve learned to adapt. My dog doesn’t care. He just wants to have a good time and eat chicken. As much as I love the ribbons, Quixote reminds there is more to life than our accomplishments.
Some mornings before competitions, my whole body screams. I encourage myself to show up and promise myself I can always go home. I almost always show up in pain. Thanks to accommodations and support, I almost always leave with joy and a happy pup.
I wasn’t completely honest. I didn’t cancel all my gym memberships.
You see I’m part of an athletic team, and while I canceled my personal membership, I couldn’t bear to abandon my teammate.
My 10-pound toy poodle, Quixote.
One night in 2014, before my diagnoses, when Quixote was 5-years-old and interrupting my reading because he never learned to play quietly with his younger brother like I hoped, I signed him up for an agility class. Attracted by the bright obstacles and potential bragging rights, agility had always interested me. Quixote had crushed his puppy class, choreographing his own circus routine for anyone with treats. I didn’t know what agility training actually entailed, but I decided my poodle would likely be the best.
Quixote absolutely loved class. Why wouldn’t he? The first few months consisted of showering him with meat, cheese, and praise any time he did an obstacle. When it wasn’t his turn, Quixote wooed my classmates into giving him more treats and praise.
As Quixote’s confidence on the equipment increased, agility training essentially became human training. I significantly underestimated the mental and physical precision required to direct a four-legged beast through an agility course at full speed. I had to learn the footwork, arm movements, and timing of commands. Every time we missed an obstacle, the instructor pointed out how it was my fault and Quixote howled in agreement. Nobody showered me with treats.
As the months passed, Quixote ran harder and faster, but my body did not get stronger. My muscles felt heavy with weakness, and my lungs burned as I tried to shout the commands. My heart distracted me with its pounding. I joked to my friends that I must be allergic to exercise. Unfortunately, there was much more than a grain of truth in that joke.
By the time I was diagnosed with mast cell activation syndrome (MCAS), I could barely walk across my condo without passing out or throwing up. All types of food induced terrifying asthma attacks. My skin and joints were so inflamed that I cried getting dressed for work each morning.
Quixote didn’t care. When I couldn’t take him outside for walks or throw his ball, he hopped onto the tallest furniture and whined his grievances, throwing in an occasional growl. I had created an exercise monster. Eventually I couldn’t handle the anger of both my body and my poodle, so kept taking Quixote to class as much as possible.
By the time I reached my disability parking spot at the agility gym, the screams of my body were often muffled by the squeals of my poodle. Once inside, Quixote bounced around the gym as if it were the greatest place on Earth. When it was our turn, I used every bit of energy to play with my poodle. My timing was usually off and afterwards I usually collapsed in pain and wheezing, but seeing Quixote happy made me happy. Although recovering from class required several days of laying on the couch, rest became much more bearable when I replayed his agility highlights in my head or on my phone.
The pain didn’t scare me as much as the mast cell reactions. As I began to experience throat swelling and air hunger, I searched for a definitive guide. For the most part, all I found were basic medical liability disclaimers. I felt silly seeking validation for a hobby that made me sick, but I had already lost so much: foods, friends, and basic abilities.
One day, a specialist said, “Sometimes we do things that make us feel sick in the short term, so we can feel better in the long term.”
There was no promise that I wouldn’t have anaphylaxis or need an ambulance, but my doctor urged me to continue with agility. I decided I was willing to risk having acute reactions for my long term wellbeing. Luckily, my instructor and agility friends were willing to support me and learn my emergency protocol.
With the help of daily meds and premedication (yes, I took 50mg of Benadryl to exercise), I began to see the advantages of agility for MCAS, EDS, and dysautonomia. First, people rarely wear fragrance to run with their dogs. Even in the rare event of perfume, the agility gyms have high ceilings and lots of space, meaning good airflow. I’m also lucky that I live in Minnesota where dogs train indoors, so I can avoid the sun and heat. Although I still worry about falling, the foam floor mats are safer than most surfaces.
I noticed that walking the courses for five minutes was much harder than running the course for one minute. Dysautonomia can cause dysfunction of the nervous system when standing–in other words, it can make you feel like you’re going to throw up, pass out, and piss yourself at the same time. I realized, during my timed runs, my competitive focus and adrenaline allowed me to briefly transcend my symptoms. Oftentimes I would skip the course walkthroughs and dedicate all my energy and adrenaline to one smashing run. At the end, I would yell, “One run and done!” knowing there was no way my body could do it a second time.
I worked with the instructor to find alternative techniques to accommodate my dizziness, pain, and muscle weakness. I relied less and less on rescue medication as I recognized my body’s limits and warning signs. On the hardest days, I sat and watched, while my friends ran Quixote for me. (He loves agility so much that he didn’t even turn back to look at me!) Through agility, I learned the needs of my disease and how to take care of my body.
Soon enough, Quixote and I began connecting as a team and crushing courses in our own way. Our runs usually lasted less than a minute, but for that brief period of determination, I forgot my illness and pain. Agility became my medicine.
So instead of quitting agility, I signed up for my first competition.
To be continued…
In the meantime, here are the details of why agility works for me.
My circuit workout
2 days without exercise or leaving my condo
3 minutes of walking the course (if I feel like it)
20 minutes of sitting
2 minutes of running
30 minutes of sitting
2 minutes of running (maybe)
2 hours or more of sleeping
2 days without exercise or leaving my condo
Advantages of dog agility for MCAS, EDS, and dysautonomia
High ceilings and lots of space = better air quality (MCAS)
Less perfume (MCAS)
Short exercise intervals (MCAS, EDS and dysautonomia)
Floor mats to lessen impact (EDS and dysautonomia)
Supportive environment (everyone needs this, but especially people with disabilities)
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