Disease Progression Stings, but It Won’t Defeat Me
“It’s time to start a more aggressive scleroderma treatment,” my local rheumatologist says, although I’m not prepared to hear it. She thinks we are losing the battle and need to fight back harder. But just like in the movies when the main character is given bad news, her words flow from her mouth, yet the sound is muffled, like background noise.
“It’s time to consider a stem cell transplant,” she says.
As she speaks, the thoughts tumble around inside my head. I recall a conversation we had years ago, when she told me these options would be on the back burner if needed. She told me then that we would only need these treatments if scleroderma was progressing too fast. So, I wonder, is my life dangling over the edge of a cliff now?
Doctor appointments rarely go well these days
This is why I loathe going to doctor appointments. I always go hoping for good news and helpful treatments, but in my chronically ill world, such wishes are rarely granted. Scleroderma is good at finding ways to let me down. This news stings badly!
Bad news always challenges my inner strength. Every day, I work hard to convince myself that I’m not that sick. So, when a doctor tells me I’m losing the battle, I must suit up for the war I’m unwillingly being thrown into. Can I hold it together for my loved ones? Will I be able to find the strength to carry on with positive thoughts and a willingness to defy the odds stacked against me?
I hate you scleroderma!
I’m not ready to be at this stage of illness. My girls aren’t yet grown. My bucket list is still long, and I’m nowhere near ready to consider changing the plans my husband and I have for our future. I hate you scleroderma!
As I write this column, I keep silently screaming those words, over and over: I hate you scleroderma! It’s hard to describe the turmoil inside me, because I haven’t accepted that this disease may have the upper hand on me right now.
Holding on to my life
I’m currently back inside the tornado of my health. It’s another storm that seems too strong to weather. But if I’ve learned one thing from this treacherous journey, it’s to remember that every storm eventually will pass. I just have to hang on for dear life until it does, long enough for a clear plan to emerge.
So, I’ll grab hold of my family, friends, and faith for the strength I need to survive, both mentally and physically. I am stronger than this disease, and I’ll do whatever I need to cross the finish line I have planned for myself. I will not wave my white flag. Scleroderma will not win this war!
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.