That's the question I recently put forth once again to my neurologist team at Mayo Clinic after a very difficult weak of testing, and a rapid decline in my health over the last 2 months. As you may suspect, my absence from this blog was due to some stability that I had finally gained managing my chronic illnesses. It took lots of time, but I was able to find the sweet spot of stability that allowed me to maintain a daily schedule, even open up my own home based business, and travel with my guys to England and Europe last year. I was still symptomatic every day, but I thought I'd finally found my personal holy grail of medicine regime. It was great! I grew arrogant that I had truly figured out the key to making my body happy. But this year, after slowly declining, I went for a walk one April morning, and ended up in the ER with anaphalactic hives, and a body that once again was spinning out of control. Damn!
I knew I was in trouble that April day. I knew I could no longer manage my own body, so back to Mayo Clinic I went. Holding out hope that maybe this round, they'd find the real culprit for my broken body. You know, like maybe a thyroid problem,which I already had, but maybe a new one or maybe an adjustment to my existing one, but honestly I knew better. Something had changed and along with all the conditions I've collected over the last 6 1/2 years, I was likely looking at yet another problem to manage. Such an overwhelming prospect.
When I first became ill, I had this Warrior mentality. This fierce arrogance that I could have the tenacity to find out what's wrong with my body, that I could will myself better as long as I held on to hope and never gave up and never surrendered. Over the years, my Mayo visits have started to have a pattern. It starts with hope that "the thing" will be diagnosed. A plan will be implemented. And I'll finally be rid of the endless uncertainty I've been living with all these years. Then I go through a butt load of testing, some of it painful and rough, like my dreaded autonomic testing, and I reach the end of the week with often more questions than answers, and always experimenting with new treatment options. After almost 2 years of sustaining somewhat a manageable health balance, I was back at Mayo running this usual routine. But this time, I'm older, I'm sicker and the testing reeked havoc on my body.
When Friday arrived, I went back to neurology for a follow up to discuss the results of my testing. Rampant wild inflammation was torturing my body. I had several markers show that my body was raging against itself and under duress. I was complimented on how well I knew my body, how succinctly I could tell my story, and how they are searching for the cause. My MCAS (Mast Cell Activation Syndrome) was finally showing on the labs for the first time ever, and my Hashimoto's Disease was still ongoing but not the culprit, so we wait on the complex antibody panel labs to come back. So far...nada. Which brought me to ask, "What is my long term prognosis? Is this pattern how it's going to be for the rest of my life?"
In short the answer was "We don't know. You're not typical to the cases we see here. We don't see as many women your age with these conditions. We can see what is happening to your body, but we are still searching for the why. There's still so much we don't know. The inflammation levels are very dangerous, but you've improved before, so we will focus on getting you back there again. We'll keep trying." And there it is. The sharp left turn, followed by a hard right, followed by a long straight road, then a massive U-Turn going back. That's the roadmap of my chronically ill life. Always on an undisclosed map down an unknown medical highway. It is still as surreal to be living this way today as it was over 6 years ago when I woke up after surgery in searing pain, knowing something was terribly wrong.
But today, the Warrior in me is so exhausted. She is battle worn and medically scarred. She sees the battle fatigue of her loving soul mate, whose shoulders are so strong, but the burden of caregiving the unknown wears on his handsome face. She sees the raw acceptance of her loving son, who doesn't remember the vibrant, always on the go mom he used to have when he was little, but who always comes to her side when he hears her silently weeping in frustration. The victories are so sweet, but the setbacks get harder and harder with time.
I'm battle worn. I'm tired to my core. I'm not so arrogant. But I am still a Warrior. I can not control the twists and turns that illness and life throw my way, but I have every power within me to chose the way I handle those challenges. And I chose to fight on always! Been spending the last week at home once again experimenting with medications, getting more diagnosis questions than answers, and wrapping my brain around the long road ahead. I may bend, but I refuse to be broken by chronic illness. Dusting myself off, re-focusing my mind, and charging ahead...Never Give Up! Never Surrender!!
