Scleroderma is referred to as an invisible illness because people living with it often look perfectly fine on the outside. Meanwhile, their body is fighting a fierce battle on the inside. This is a blessing and a curse. A curse because it can lead to others, including doctors, not believing we’re as sick as we are. But once the damage is done it’s difficult if not impossible to reverse.
Today, my heart is slightly enlarged on one side and still has a moderate amount of fluid around it. But it’s stable. I have stage 3b kidney disease as a result of renal crisis. They are stable but their poor functioning means I’m limited in treatment options that are standard for use in Scleroderma. I have GI issues that caused me to lose 40 pounds and now I struggle to maintain a healthy weight.
I have constant pain and fatigue. The kind that sneaks up on you and makes you feel like you’ve just been body slammed; then forces you to have sleep for two hours every afternoon.
I still desperately grieve my old life!
Along the way though I’ve discovered lessons and blessings in the storm.
- The power of prayer!
- My amazing husband who’s always standing with me!
- Wonderful family and friends who have been steadfast on this journey with me, each showing up in their own special way.
- An incredible Scleroderma warrior community from around the world.
- I’ve cultivated a sharp medical team of 8 specialists that has my back.
- It’s okay, and my ultimate responsibility to use my voice to advocate for myself and to help others do the same.
- The power of sharing one’s story.
- A level of courage, resilience and resolve that I never knew I had but now understand exists in everyone if they tap into it.
- The importance of pursuing a purpose.
From the outside looking in you may see me trying to do ALL the things and wonder how and why.
I know I push myself too much and too hard. The truth is I’m doing my best to outrun Scleroderma. That’s probably the definition of denial and I’m okay with that!
I do pray that one day I’ll look up and it will be gone. I know a cure is on the horizon!
All that said, I fully understand that although my life is difficult, the truth is everyone is going through their own trials and tribulations. No one’s story is more important than another’s.
The one thing I’m sure of though is that there is still hope…because there is ALWAYS God!
