I think back to when I was first diagnosed…
29 years old. Mama with 2 babies. My body went rogue on me.
I felt a combination of fascination and fear each time my nervous system would misfire.
I would play with the bouncing vision in my right eye – the lesion was in the back of my neck and standing in front of air conditioning could actually make it stop. “Tigger Eye” I called it. The likelihood of anyone ever experiencing this is slim, if it does though, DO NOT close the good eye to experience only the jumping sight, you will vomit. May you never have to heed this advice.
I had numbness, burning, and stabbing in my thighs. Shooting pains and firey heat that would hit randomly and cause me to lose my breath. I have long since lost all feeling permanently in those areas…a new normal. Quite frankly, I hardly notice it now.
My bladder went. This mortified me. I told no one – literally not a soul – and stifled tears at the doctor’s office for that fateful first appointment. It was this symptom that eventually led to my diagnosis. I didn’t share the journey with anyone until several appointments in, when it was time for the spinal tap and MRI.
Ah, that first MRI. I was scared to death. With and without contrast – scanning from my brain to the base of my spinal column twice I was “shooting the tube” for almost 2 hours. Today I would welcome this time as a much needed nap.
My hip pain was very intermittent then. And I unfortunately let it stop me. I bowed out of many activities when it would flare – not wanting people to see me weak. What I would give to “only” have that pain level today.
It’s been constant for weeks now. Slowing my walk, bringing me to tears, dropping me to my knees, and yet I keep going.
What else is there to do?
I’ll be back at the doctor again within a few weeks when my ability to move, sleep, and push through is exhausted. I doubt I will be able to avoid drugs this time. I’ve been forging my own path and beating the odds for so long, I begin to question what is best.
I’ve never been able to run around with Dylan.
Tears just filled my eyes when I typed that.
He only knows his mama in pain.
This breaks my heart.
I pray for gratitude for the good moments, faith for the dark times, grace for myself and others.
I pray for a cure.
I believe we will find our answers buried somewhere between genetics and lifestyle.
I don’t like having a label – quite honestly I have been given so many at this point I consider them all a joke. The reality is the medical community doesn’t really know why autoimmune diseases are running rampant. There are many clues and no definitive answers.
Sometimes I play Dr Google, convinced I will find the missing piece.
Most times I push through each day, accepting my symptoms, with little energy left from enduring them to pursue answers.
I’ve heard the medical community tell me on more than one occasion I wouldn’t be able to walk again. I hear those words often in my mind and remember those moments vividly.
I may be slow, I may have pain, I may even cry and curse – I also continue to walk and absolutely refuse to let statistics be my fate. I am not a number. I use their words as fuel for my fire and flip them off in my head as I crawl up the stairs. I will not be stopped.
I am a force for good. 💖