By: Lisa Ann Krutzik
In many communities the clock changes twice a year pushing ahead at one point and back at another. The goal is to be awake in the light. I’ve been thinking about living in the light vs. dark a lot here of late. Those words are very metaphoric and often used in a religious way, but I think it applies to the science of health as well.
I was diagnosed with Hashimoto’s in 2000 after a horrific car accident and I distinctly remember the doctor saying “Don’t worry about it, there isn’t anything you can do – this will be a life long condition – lots of people have it – take this pill every morning – the symptoms will go away.” I was in the dark.
In 2016 I did a fad Only Juice Diet and it was the final (not only) full body stressor that triggered an immune reaction I am still struggling to control. Within a few weeks of starting a nutritional starvation program my throat had lesions lining it all the way down, I was told to start eating real food again, but really could only eat soup and ice cream. Eventually the blistering started in my mouth and anything with sugar just killed. August of that year I would get an epic sun burn and within weeks blisters appeared and spread like wild fire all over my body. By October I was losing over 10 cups of fluid a day through my skin and no doctor could tell me why. Seven months and seven doctors later – I had an answer (and it wasn’t herpes – dear ENT) Pemphigus Vulgaris.
I was still blissfully living in darkness thinking – “cool, we have the problem now let’s get a pill and everything will be okay!” Wrong. The dermatologist (whom I was sent to on a fluke) literally said “This is out of my league – but there are research doctors at UB studying this – it’s that rare.” It was when my regular doctor, whom I now trust more than my closest friends to be straight with me, literally closed his precious laptop, sat on the table next to me, put his hand on my knee and said “Lisa Ann, I’m so sorry.” That…that was the moment I knew that there was no pill.
It has been three years; one super important drug study, eight major infusions (two more this month,) thousands of mg of prednisone, hundreds of Tylenol tablets, many hours of sleep, countless doctor appointments, lack of ability to think, incapable of working full time until this past year, and a collection of pill bottles (if I hadn’t put them all in the recycling bin) that would rival a pharmacy.
I had been living in the dark. I had been living in a mindset that I had no control over the autoimmune disease attacking my thyroid – because I blindly listened and didn’t research. Dr. Sinha quietly listened to my whole story the first time we met – he wasn’t on the same time clock that all the other doctors seemed to be on. He asked if I would be willing to participate in an immune study that Dr Seiffert was doing intakes on and if she could call me and ask more questions – I said yes. This would open a door to the light.
I am still participating in the ongoing study these two amazing doctors are doing and on December 7 – my 52nd birthday – I am hosting a Zydeco Dance Party Fundraiser at the Tonawanda Fire Hall at 44 William Street, Tonawanda, NY 14150 at 7PM. There will be great fun music provided by Black Rock Zydeco that you can’t stop your body from moving to, jambalaya for sale made by Toutant restaurant in downtown Buffalo, a basket & 50/50 raffle, and a mini gallery showing of images & stories of my Buffalo NY to Buffalo WY journey this summer.
I fully understand that these doctors including Damian Zakroczemski from Primary Care have enabled me to live on borrowed time. I will eternally be grateful to the three of them and if there is a way, through the light that research shines, to fix autoimmune disease, to prevent it from expanding beyond Hashimoto’s in the first place (approx. 50% of all exasperated autoimmune disease cases are linked to Hashimotos’s – they call it clustering – I call it a cluster (you know) – Type 1 Diabetes, Crohn’s, Lupus, MS, Rheumatoid Arthritis all chronic, all painful, all life changing, all triggered by stressors and all linked to B-cell issues plus because they don’t actually treat Hashimoto’s just cover the symptoms the B-cells continue to create antibodies that eventually attack a second or third or more parts of our bodies in an attempt to kill us.)
This research that Dr. Seiffert and Dr. Sinha are doing at UB reaches into the arena of all of these other tragic diseases.
Sometimes we have have to push back the clock in our lives to figure our how we got to where we are – then and only then can we push the clock ahead to look at the future. The research these two doctors and their team of medical students are doing look at exactly that and what is happening with our blood over time.
Come learn more about their research, dance to the happiest music on the planet, and meet some people you’ve never met before. Come celebrate Borrowed Time and living in the light.
For December 7 tickets in advance $10 please click here.