She Can’t Do That
It wasn’t until I heard this out loud for the first time when it really it home. For some reason it hurts more when other people say that. I know I can’t do that, but for someone to actually say it out loud…that was a new kind of hurt I wasn’t expecting.
Where It All Started
I’ve always been strong willed and stubborn. Maybe in denial? Or maybe just living life as best as I could? If there were some obstacle or hurdle in my way, I never let it stop me. I made a goal, and was determined to reach it.
When I was 4 years old, I was diagnosed with Juvenile Rheumatoid Arthritis, now known as JIA. One Halloween I fell while trick or treating, and hurt my knee. Well, it never got better. It only got worse. My little 4 year old knee was the size of a cabbage ball.
I remember sitting in my preschool class in “circle” on the floor being the only child not able to sit with their legs crossed. For some reason that memory plays so vividly in my mind, like it just happened yesterday.
My knee would continue to swell off and on, and I’d continue to try all of the medications. My parents used to hold me down while my next door neighbor (a nurse) would somehow manage to give me my weekly methotrexate injections. Even with all of the medications, blood draws, and hours worth of doctor’s visits, I never let it stop me.
I played soccer my whole adolescence and ran cross country and track in high school. In fact, some days I would run a cross country meet then proceed to play in a soccer tournament 2 hours later. I have no idea how I managed to have the heart health and lung capacity to even tolerate that. There were no limitations, I was unstoppable. I’m sure my poor joints will be screaming by the time I’m 50 for all the wear and tear I put them through ON TOP of the arthritis.
Overcoming A New Obstacle
To get back to what I was saying. I HATE when someone tells me I can’t do something. I literally tell my pulmonologist that every visit. When I was diagnosed with PAH, that was really hard to hear. But realistically, I knew I didn’t have the physical capacity I once did. I was living on 3L of oxygen at the time, and barely getting off of the sofa. I was just surviving.
As time went on, I began to feel better…or so I thought. I felt better than I did post-PE, but did I feel as good as I did before the PE? Before I was pregnant? Not so much. People would always ask me why I was so short of breath or to move the phone away from my mouth because I was breathing so loud.
It wasn’t until I went to San Diego to see some of the best pulmonary hypertension specialists that reality set in. Long story short, I learned I was in heart failure and had SEVERE pulmonary hypertension. To say I WAS TERRIFIED is an understatement.
I was too scared to do anything. Too scared to walk too far. Too scared to climb stairs. I was worried my next move would be the breaking point.
Clearing The Hurdles
Since April 2022, I have begun treatment that has me feeling better, although I am not by any means your typical 30 year old. I still have limitations. There is an echoing fear that still lingers. I have to listen to my body for fear that all of the progress I worked so hard to achieve will be for nothing. I don’t expect this journey to be straight and narrow, but I can’t handle one more rollercoaster ride of 1 step forward, 3 steps back.
Simply put, I know I can’t do that, I just don’t need to be reminded. I am reminded daily of all the things I can’t do. I know my limitations, I know my body better than anyone else.
Certainly, I will not jeopardize my hard work, pain, and suffering because of someone else’s interpretation of my illness. At the end of the day, I am the only one responsible for my health and wellbeing. I am the only one that will feel the consequences of my actions.
Don’t tell me I can’t do that. It will only make me push harder.
Don’t tell me I can’t do that. I will prove you wrong.
Don’t tell me I can’t do that. Because then it is real.