I have PKD: Finding Strength in Vulnerability

I have polycystic kidney disease.

After over a year it still feels weird even saying it.

I will always remember the moment I received the call. It was the last Wednesday in October, October 25^th 2017. I was running on the treadmill when my doctor called with the results of my MRI, which had been done due to an umbilical hernia I was to have surgically fixed. Recognizing her number, I slowed to a walk and quickly answered.

Merely from her tone, I knew that this call was not only about my umbilical hernia. Only four words, but those four simple words, will haunt me forever: “we found something else.” Right then and there, I knew my life was about to be changed and altered in ways I was not prepared for.

It felt almost surreal. Time seemed to slow, and my surroundings faded away. I felt as if I had been punched and had the wind knocked right out of me, like a kid falling, back first off the jungle gym, unable to regain control of my breath and grip reality.

Not only did the MRI show the umbilical hernia, it also revealed that there were cysts all over my kidneys, and both kidneys were far larger than average for a person my age. The diagnosis, polycystic kidney disease (PKD).

At this point my legs felt heavy. I couldn’t move. I was in shock, lost for words, unable to understand the reality she had just plunged on me. The world as I knew came crashing down.

Every problem I was complaining about, every stressor the new Arlington studio created, every disagreement I had with a friends, every little bit of nothing that I bitched about earlier seemed nonexistent, completely irrelevant.

When I received this diagnosis, there was no problem of unfamiliarity with the disease, but rather the fear from my over awareness and experience I already had with PKD.

My father has and lives with PKD. At age 48 he received a transplant, as he lost function in both of his kidneys. Through his diagnosis and treatment, I witnessed the toughest human I know take on an incredibly tough battle with PKD. I watched the toll it took on his body and while he never complained, it made me realize that this was never something I wanted to experience. I strongly felt I would not be able to handle it.

But there I was and here I am with a diagnosis in a reality that was happening whether I wanted it to or not.

I had never felt more alone than when I hung up the phone. I went home in a state of complete disbelief, tears streaming down my face, and thoughts cycling through my mind: what do I do now, how can this be true when I live a healthy, active lifestyle. I felt like a broken record was playing nonstop as I continued to ask myself why me, why now, and how could there be no cure, especially when Boston has some of the best hospitals in the world.

For the first time in my life, I felt helpless. As someone who loves being in control, it was devastating to feel like I had no power in this. I would never be able to work hard to obtain a “cured” result. There was nothing I could do.

As helpless and as alone as I felt, life continued. I had to force myself out of bed and go to work. Life was happening and I had to show up and do my job. Sitting in the parking lot of Sweat Fixx before beginning the 5:30pm class I couldn’t help but think how the hell am I supposed to go in there, inspire, and motivate this crew? How will I bring myself to make it through this class without breaking down?

However, the funniest thing happened. The second I walked through those doors into the studio, I no longer felt alone.

I was immediately greeted by my mother, who almost 5 years prior, survived pancreatic cancer. She had a huge smile on her face and was ready to tackle any challenge I was about to throw at her.

Next, I saw my regulars. Their excitement was palpable, almost contagious and their readiness to work and push themselves was invigorating. The comradery amongst them, the overall excitement to just be there and to be a part of this community pushing one another, working their asses off to better themselves was unreal.

It was then that I was able to take a step back and reflect. In that split second, I saw how lucky I was to have created this, to be a part of this, and to relish in the joys that Sweat Fixx brings to so many people. I couldn’t help but think of how fortunate I was to have such a selfless community of people who look up to me, who support me, and who would undeniably step up if ever I needed anything.

I knew what I had to do. I had to fight, I had to figure out a way to combat this, but most importantly I had to change my perspective.

That night I decided to give up everything believed to hurt my kidneys. This included coffee (sigh). As a 3-4 cups of coffee drinker for more than 8 years, boy did I get some nasty withdrawals from stopping cold turkey. But I was determined to try to find ways to fight this.

I also had a major reality check as to what was important. Things that I once viewed as “big problems,” no longer held the same significance as they once did. I’ve always been very transparent about opening Sweat Fixx and a key point I bring up, whether I’m mentoring a client or chatting on a podcast or interview, is that if some big life event ever happened, I would’ve been incredibly upset with myself if I stayed at my desk job.

Guess what? Something big did happen. And I can honestly say a major part of the reason I can be upbeat about the situation is because I took a chance on myself and am now able to do what I love every single day. There’s no denying this job love didn’t make receiving the diagnosis any better; however, it helped to know that I have this community & I’m living my life for me, not for anyone else.

Upon the diagnosis, I was not ready to discuss my disease with anyone. Up until this point, only my dad and a couple close friends knew about my PKD. No one else, not even my family or members on my Sweat Fixx team.

The reason for my secrecy in handling my disease is simple. I was, and frankly still am, scared to tell people.

I was scared of the way people were going to look at me once they knew, scared of talking about it and making it more real. I was scared that I would no longer be viewed as someone of strength, but as someone that was wounded. I wanted to out work the disease and that is exactly what I did.

I threw myself into my newest studio that was opened in Arlington and then found myself focused on the next one we were hoping to open fall of 2018. During all this insanity was when my mother was re-diagnosed with Pancreatic Cancer.

When that happened, I really felt like this didn’t matter. How can I ever watch someone go through what she did and complain or even talk about what I have?

As a result, I stayed silent, throwing myself back into Sweat Fixx, back into this community.  

It was and still is everything to me. It has been and will continue to be the thing that forces me up in the morning and will never allow me to feel bad for myself. Everyone in this community inspires me to be such a better person than I used to be. I am my best self with anything involving this community.

Every month we do Karma Fixx classes where we give back to great causes that deserve attention. I am not the only one with a kidney disease, and even though I’m nervous as hell to tell my story, I know that I owe it to others with the same diagnosis to raise awareness. It’s time to time turn this situation into a positive, and that’s what I plan to do! It’s time to find strength in vulnerability.

PKD affects thousands in the US and millions worldwide and yet many people have never heard of it. The more people who know about PKD, as well as other kidney diseases, the closer we can come to developing treatments and hopefully a cure.  

When I found out last year, I truly felt I had no control. This immediate, gut reaction was wrong. I do have control—control in how I help raise awareness and how I can help to guide future steps in the right direction towards finding a cure.

It’s time I use the small platform I have to start spreading some awareness and what better time to grow some balls and share my story than during Kidney Awareness Month.

As this community moves forward, know that nothing will change. Yes, I have PKD, but I will still be your favorite pyscho. I will still try to open a million studios, get an 8 pack, row thousands of meters, host fundraisers for causes, but I think it’s time we shed some light on this and do our part to help.

We will be hosting 10k relay fundraisers on Saturday March 23^rd to raise money for the PKD Foundation. 3 people will be on a team, $60 for each team to enter. We will be hosting this relay in all 3 studios: Wakefield, Southie and Arlington studio. This is a cause that is clearly close to my heart and it would mean so much to be able to give back. If you are interested in joining email Carly@sweatfixx.com to join.

LFG Crew.

Love,
Your Favorite Pyscho.

For more information on PKD and the PDK Foundation you can head to PKDCURE.Org.https://pkdcure.org/