“You can do anything for two miles…”
My mom first strung these words together when I was around 12 years old. We were on a group cycling trip to Big Bend with plans to do a 40-mile ride which included a daunting 2-mile climb. I grew up riding the flat highway which ran between the cotton fields in the Texas Panhandle, but this was no ride through the flatlands and was obviously better suited for adults, so I was uncomfortably nervous. I listened quietly to the adults ramble on about what was to come. As a hardheaded girl trying to prove I belonged, I said nothing and tried to swallow my mounting fear. My mom, noticing my anxiety, smiled and whispered the phrase to me for the first time.
Despite being way out of my league, I finished the ride and “you can do anything for two miles…” stuck.
Over the years, the words repeatedly resurfaced as she sagged me on training rides or runs, and she often shouted them to me on the sidelines of challenging races. Gradually, they became encouragement for any difficult path in my life. The phrase grew to mean I was stronger than I gave myself credit, not to be afraid, and that pain was only temporary. With these words, I could talk myself through almost any distance, two miles at a time.
But these words died with her a year ago today.
Included in the heavy pain and loss of the past year, I’ve also learned I have POTS (which spells STOP backward btw), so I won’t be training for a race any time soon. This means I did not run a marathon in Alaska with Jenni last week. And also means for this season, there will be no trail running, no waterskiing, no bike riding, and no open water swimming. At the moment, I can’t even take a walk with my dog. Instead, I’ll spend the upcoming months training to continue standing up.
Because POTS is an autonomic disease which causes blood not to move through the body the correct way. Basically, I am now ‘allergic to gravity’ and instead of my blood circulating to vital organs, it pours internally to the ground- potentially affecting all my body’s auto-pilot functions. If the human body were a car, it would now be driving long term without oil. Still, POTS is defined as a ‘serious, but not usually life-threatening condition’ unless, of course, you ignore it, and it damages your organs.
Which brings us to my case, which is POTS with a severe cardiac response. I would not usually use any platform I stand on to complain about a medical condition. Except, having POTS means I am now painfully mindful of how unaware the medical community, and the general population for that matter, is about this condition. The average time for a patient suffering from this disease to receive a diagnosis is almost six years! (And after that, they will often wait upwards of a year for an appointment with a specialist!)
Almost six years of doctors turning you away. Six years of the medical community dismissing you as ‘anxious and depressed.’ Six years of asking for help, being ignored, all the while internally knowing your body is deteriorating. Research has shown the quality of life and impairment for a POTS patient is comparable to those with congestive heart failure, COPD, or patients on dialysis for kidney failure. And I wonder, if somewhere along the way, these patients were taken seriously sooner, would their health have rapidly declined? The estimated one million people diagnoised with POTS (over 85% female) in the US should raise their voices in unison to raise awareness and ask for help.
The treatment chapters of my POTS story started in the office of my OBGYN. Though I had seen several other specialists, no one could find an answer to my alarming fatigue, extreme dizziness, and dangerous brain fog. The common theme was chronic anemia, and since my symptoms were worse around my period, I chalked it up to hormones. And there was a significant problem there. (As side note - studies suggest POTS might be linked to estrogen dominance, with many women experiencing exacerbated periods, cysts, and uterine fibroids.)
My periods became horrific - think fetal position, unable to stand, crying on the bathroom floor passing clots the size of a ping-pong ball horrific. Still, I was quiet about it, as a good girl is trained to be about such issues. I was naïve enough to believe all my problems would cease if I did something as permanent and painful as a uterine ablation.
Only, that is not what happened. Instead, my health continued to decline. As my heart absorbed and responded to the brunt of my circulation problems, I was initially having upwards of 900 PVCs an hour (over 20,000 PVCs a day) with bigeminy, couplets, and R-on-T. After navigating the grueling ebbs and flows of medication side-effects, with the advice of my EP, I opted for a cardiac ablation. Only it did not work, and the PVCs dramatically increased. Six weeks later, we tried again, and this time I stayed awake, without drugs or sedation to increase my chances of success—finally, sinus rhythm. But...the celebration was short-lived.
Back in the OB’s office, my doctor asked for any new developments. When I alerted him to my cardiac issues, he showed genuine bewilderment and concern. “Why is this all happening together?” For a few minutes, he was engrossed by my chart on his computer screen, occasionally glancing back at me, before finally shrugging his shoulders and saying, “you must be shopping at Walmart.” Before heading out the door, he added “about those 15 pounds you gained suddenly… there is no excuse for that.”
I left crying and cut my 1,200 calories a day down to 1,000 for the next four weeks and, against the advice of my cardiologist, pushed myself to exercise five days a week regardless of how I felt. By the end of it, still on a myriad of cardiac drugs, I had gained three more pounds.
Then there came the point when I could no longer stand up or walk unassisted, and I would at times collapse completely. The hours I spent laying in bed staring at the ceiling, unable to read, unable to write, unable to stand, and at times unable to even form words, increased. I could hardly shower on my own.
Cardiology and EP compared notes, did another series of tests, and diagnosed me with POTS. As relieved as I was to finally have an answer for the elusive illness overturning my life, my doctors were out of their element. They left me again crying in the hospital, unable to stand, with a pat on the back, some advice to drink water and wear pantyhose, assurance that there was no cure, and a reminder to maintain a positive attitude.
I did my best to preserve optimism despite my increasing symptoms. In that optimism and resignation to chronic illness, I stopped reporting my symptoms. However, the collapses continued, and my heart further deteriorated. After a loop monitor insertion, and a same day collapse and complete loss of consciousness, the doctors determined my heart was indeed frequently stopping, ‘asystolic’ they called it, for upwards of 9.5 seconds. Sick sinus syndrome - they implanted a permanent pacemaker.
It’s helping, and I am no longer passing out, but it is not fixing the problem. I’m thankful for the progress…. but significant life-altering issues remain. I am a former marathon runner who now can’t walk through a parking lot, a once energetic mom who sometimes needs help walking across her house. I still deal with significant dizziness and chest pain so constant and unrelenting it is hopeless.
I don’t share this to whine, solicit pity, or sympathy, but I think honesty is relevant for the sake of others trapped with this disease. And here is the truth – POTS breaks strong women (and men).
In addition to challenging my relationships with family and my dearest friends, threatening my career, and ending my athletic ambitions, at 38 years old, POTS has taken my uterus, cauterized my heart in almost 20 places, and left me with a metal device permanently implanted in my chest. Correction - not being heard - has taken my uterus, cauterized my heart, and left me with a permanently implanted device in my chest.
Anyone who knows me knows how much I love and respect men, so this next tangent is likely unfair rant…
Outside of my husband, on the shortlist of my two very closest friends, stands a man whose friendship I could not imagine my life without. I am not a bitter man-hater, quite the opposite. To simplify things, I would be content to take gender out of the conversation in most arenas. (I would love to just be an artist, instead of a ‘female artist.’) But in this instance, I cannot quiet the nagging voice inside that compels me to slowly raise my hand and ask a line of related gender questions like, “why is it we have so little information about the female heart?” or “why are my cardiac ‘normals’ compared to that of a middle-aged man?”
The answers are shamefully rooted in unacceptable discrimination. The truth is the female heart is only recently being studied at all. In many places, it is only within the last 20 years that women were even allowed in cardiac studies. Which I believe is why 78% of early female heart attack symptoms go undiagnosed. This mentality has robbed me, and countless other women, of long and fruitful lives. Honestly, we can do better. And if anyone with financial means reads this and wants to invest in gender equality, please start by sponsoring research here.
I recognize our medical system is overburdened, and I’m thankful for the hardworking and self-less individuals who dedicate their lives to the profession, some within my own family. I acknowledge too, that despite its best efforts, the taxed system invertedly sidelines both men and women alike. However, as I wrestle with the years it took the system to make my diagnosis, I can’t help but be suspect. I begin to wonder if one million US men all had the same disease and asked for help, would they be dismissed, or prescribed anti-depressants, would it still take six years to diagnose? And if, after all that wasted time, would they be offered better solutions than pat on the back, a pep-talk about attitude, and a bottle of water? The bottom line, we need more research for women’s health.
Enough of the soapbox. Emotionally, I’m at that transition in the landscape where the wind drops the sand at the base of the mountains. The invisible wisdom which flowed so effortlessly through the rest of my life has suddenly hit a wall, fallen short, and dissipated. Ideas like, ‘this too shall pass’ and even the sweet ring of my mom’s gentle encouragement, ‘you can do anything for two miles…’ aren’t enough to carry me over this impasse.
Because this pain isn’t temporary, this is long-haul suffering. I’m not strong enough to get through it and it likely will not pass on this side of life.
And all I can think now is, “I would do anything to go two miles.”
