The weather changes with the seasons (in most places), children grow up, Bath and Body Works discontinues your favorite line, and the word Pompe Disease enters your vernacular essentially changing your life forever. When Pompe enters your world, whether you are the patient or a friend or family member who has agreed to brave the journey with one of us – everything changes.
Suddenly, (for many who have this option available) every other week finds you hooked up to an IV for most of the day receiving a live saving drug – Myozyme or Lumizyme. For some it means having a port surgically inserting into your chest. And for other is means relying on a machine to help you breathe. For me, it means a adhering to a strict high protein diet and physical therapy regime. It also means sharing my story here and in the media and to whoever will listen – even if it means beating down doors, holding people down and forcing them to listen.
Change can be scary – in any situation. Fortunately, I usually adjust well to change as it is all I’ve ever really known. I’ve learned to roll with the punches and pick myself up (literally and figuratively), dust myself off, and try again. I’m not as strong and as fearless and I may sound. I have moments where I do want to give up, where it just seems too hard and incredibly unfair, but luckily they are just moments and they pass. These moments are important because they help me realize that this battle is hard, and it is ok to become frustrated. Just as long as I don’t stall out in a moment of despair, but instead regroup and focus on what is really important. Often these moments of frustration come when I’ve lost focus of the goal – with Pompe, I’ve found that you can never take your eye off the ball.
They say what doesn’t kill us only makes us stronger. Well Pompe is trying to kill me, so does the fact that I’m not going to let it and that I choose to fight back make me stronger? So, is this a battle worth fighting? Is it a battle that any of us can win? I think so and believe it is worth fighting. Fighting to regain as much strength and independence as I can. Fighting to raise awareness. Fighting to develop new treatments and even a cure.
Did I mention that I’m incredibly stubborn? That helps A LOT!
Some people go through life not knowing where to focus their efforts or what is really important – it is a no-brainer for me. I fight against Pompe, for myself and for others. No matter how hard it gets or how the battle changes, there will always be warriors and heroes out there fighting the good fight. Whether it is a parent working a second job to help pay the medical expenses, or the sleep deprived scientist working in the lab developing a better treatment, or the Pompe patient working through the pain and weakness in physical therapy – there will always be resistance to this horrible disease that seeks to destroy us. The fight may at times seem lonesome, but there are people all over the world fighting their own personal battle against Pompe and from one another we can draw strength, especially during those moments of doubt that we all have.
Like I said, change can be hard. It can be frustrating. But we need to adjust to new things otherwise we’ll lose the battle. For example, I have to change insurance plans in a matter of days. This is more than just a hassle with paperwork, it is going to cost more – a lot more. My premiums will be almost double, my co-payments will be double, and my deductible is increasing considerably. Technically my insurance company should allow me to stay on their plan for 11 more months, but due to a nightmare of paperwork bureaucracy and misinformation they have decided to drop me. Now we all know they could do the “right thing” and allow me to stay on their plan for another 11 months, but insurance companies hardly ever do the right thing for patients, they do the right thing for the bottom line. And having someone with Pompe disease on the plan is terrible for the bottom line. Did I want to tell them to have a Merry Christmas and a Happy Go To Hell? Of course! But that wouldn’t have solved my problem. Luckily I have a wonderful Genzyme Case Manager who is helping work through all the nightmarish paperwork that comes along with signing up for a new plan with a pre-existing condition. She assured me I had nothing to worry about. So, while this change – in a word: sucks, there is hope out there for me. Somehow it will all work out and I’ll continue to receive Lumizyme which will allow me to fight the good fight.
Everything changes, and with Pompe as part of the equation things can change quickly and dramatically. Life with Pompe is never dull, and no matter how it may feel at times – you’re never alone. There is a wonderful support community out there between the other patients and families, the folks at Genzyme, and the dedicated doctors and nurses – there is always someone you can reach out to, you just have to be willing to reach out. And please remember to pay it forward to another lost soul when the opportunity presents itself, and it will present itself.
We can’t always control the things that change in our lives and there is no sense it stressing out about the things we can’t. Instead focus that energy and passion towards the things you can do something about.
And in the spirit of change… I decided it was time for a change – a change in my hair style! Hey, I said we need to focus on what we can change and didn’t say it couldn’t be (at least every once and awhile) superficial! Wink! Wink!