A diagnosis that will not define me.
I have always been one that likes to be very open with people. I feel like we can always learn from each other and feel normalcy in tough situations when we hear that others are going through the same challenges (especially as mothers). However, the past 9 months I have had to step back and keep some things to myself until I had answers. On Wednesday, I finally received an answer and a diagnosis to some health issues that have been getting worse over the past few years. It was something I felt I needed to keep private until we had an answer, so that my family, business and personal life could sustain normalcy, and no one would worry. But now with answers, and over 9 months to do some soul searching, fight a mental battle, and re-look at my life, I can share with everyone what is up with me.
Many of you know me as the owner of Pipes Fitness, an active, sarcastic and energetic person that promotes fitness, yoga and health, the mother of two awesome children and a wife. I am very much still that person, but now with a much stronger position on who I am and what I stand for. This week it was confirmed that I have a rare genetic condition, 1/50,000, that affects the neurological system. It is a condition that primarily affects the male population, but some lucky females (like moi) also get the symptoms later in life. It is just one of those freaky things where a gene takes a funny turn during development and a mutation happens (think Ninja Turles lol). It has been with me my whole life (but decided to make a more defined appearance in the last 4 years) and there is no treatment, but “Exercise is Medicine” and I will continue to primarily use that as my therapy and yoga for my symptom management. It is something my little family gets to deal with, and for our privacy have decided to keep the name confidential.
You will still see me do a heavy deadlift, pump out chin ups and push ups, pop up into a headstand…but ask me to box jump, stand on one leg, or change directions quickly and some of the simplest things in life that we take for granted takes me a very conscious effort and are a challenge. For me, my condition is mostly in my legs and creates weakness and a ton of cramping, and lately is trying to sabotage my posture. Walking is my toughest challenge (running is completely out of the game right now), and it takes a lot of my focus to pick up my feet and watch where I am stepping to keep my balance. I need to use a railing to go up or down stairs, I trip often, and most heart breaking...I can’t carry my kids. My main life and training goal now….to stay on my feet and walk until I am an old grey haired lady😊 It has also blessed me with a bladder that sometimes makes me have to go pee 3 times during one yoga class.
Now that you all know, treat me no different...as nothing is. If anything, I would appreciate a high five as a sign of motivation. I will continue to train as your instructor as I have been, but now feeling like I have nothing to hide. I will continue to stand that fitness and yoga are a method of “training for life”. What we set ourselves up with, is what gives us the strength both mentally and physically so we can get through life, especially through the tough times. I have learned it is important to set a good example but to be real, to understand that positivity is great but that acceptance is sometimes just as important. I have young children that need to see that something that is in my cards is apart of me, but will not define me because we are strong and resilient. I will continue to teach my kids that it is ok to break down and it doesn’t make us weak, but that we can and will always pick ourselves up and move forward.
To you, my clients, I want to thank each of you from the bottom of my heart. You are the reason I get out of bed and MOVE, and your drive to keep improving, and always showing up motivates me more than you will ever know! I always tell people and truly believe my clients are the most amazing people and being around you makes my day! And to my abundant medical team, I freakin applaud you for all you have done, for your confidentiality, and all you do to keep me mobile so I can avoid the prescription side as much as possible for symptom management.
Feel free to follow me on my blog as I share my journey leading up to a diagnosis, and what I have and continue to learn.