Instagram is my diary of sorts. But a few days ago I accidentally deleted the last year of my life in pictures. So now I am going back through the events of the past year, from the other side of it. Leaving my proof of existence in the world on the platform once again. Its oddly poetic that my trip to Mayo clinic was the last of the posts deleted, or maybe God just saw an opportunity to help my heart and body finally get brutally honest and process what truly happened at Mayo. Either way, here I am rolling with it, seeing where this new exploration may lead me.
So let’s start from the beginning. November 11, 2019 I had a virtual follow up with my Mayo Doctor, my body had crashed, my local team was at their limits and asked me to follow up with Mayo. He took one look at me and said get down here, I think we can finally nail this down. So eleven days later I was in Arizona. Round two here we go.
A little back story, trip one to Mayo Clinic in 2018 I got the whole pentad diagnosis, POTS, H-EDS, MCAS, Dysmotility, and Autoimmunity. However, aside from Hashimotos, we had no idea what the autoimmune mechanism is/was. He just said “this turns into a big autoimmune disease one day, I just don’t know what it will be, we have to sit, wait, and retest.”
So I went, we did the retests, and we were operating clinically under the assumption it was Sjogrens that would present. But it didn’t show. It was literally one lymphocyte away from showing proof of Sjogrens on my lip biopsy.
We are assuming it is because I am on an immune modulating medication, that I didn’t have time to go off of, that the response was suppressed. I got a clinical dx of Sjogrens and was sent home to get an early auto antibody panel. I went off LDN, got that panel and it was positive, but early antibodies are not diagnostic of Sjogrens. Therefore Mayo couldn’t prescribe the one thing I have always needed. Instead they recommended weekly IV steroids and plaquenil.
Physically I was wrecked, this trip and another round of Autonomic Testing took it all out of me. But emotionally I was even more wrecked. I put all my hope into the fact that this was finally going to show, I would finally get the treatment, and maybe have a shot at life. I put my full faith in medicine (which I learned so long ago not to do), and I was pretty crushed. Other than the steroids there weren’t really any options, I felt less “solved” and more confused then before. And ANOTHER trip to Mayo Clinic where they throw their hands up and say, “wow this is bad but we can’t solve this puzzle yet,” was some sort of weird emotional crisis. My PCP and I discussed options and together decided that IV steroids was not a good plan yet, and would cause more harm than good (based on the fact that previous steroid tapers have made me an awful person, and the repercussions of steroids are large). At this point, I was done. I was ready to quit trying. This trip just took it all out of me.
Back home I woke up one day to a brief moment of clarity, and this little nudge in my heart to remember who I am and find another way. You see I always have a plan A, a plan B, a plan C-Z. The days are so blurry, because my mental health was in the dumpster, my husband was still four hours away, and it was winter in Idaho. What I do remember is a text from my one of my sweet friends from Portland, saying “do you have the space for me to update you on my appointment with Dr. *?” And finally the lightbulb came, I got onto my chart and sent a message to the saint of a woman who managed my care in Oregon, and explained everything, and essentially said can you help me? The next morning I woke up to a chart message saying yes, get on my schedule and get over here as soon as you can. (Pre virus world obviously). So I was scheduled for March. I just had to hold on until then, which I knew would be okay, thanks to the amazing team of natural health care providers I have in my life. Lol spoiler alert…. The world changed a bit in March.
It is important to note that the trip to Arizona was also an immense blessing. Antonio was living four hours away at the time. We had spent more time apart than ever before and it was wearing on us. We had five whole days just us, and it was blissful. We only got one day of Arizona sunshine, and the rest was monsoon weather, but there is no one else I would rather be trapped in a hotel with than my sweet Hubby.
We hacked a way to watch hulu, cuddled up, found the best coffee shop, and darted outside to explore anytime the rain cleared.
Again and again he is my rock, my protector, my very best friend, and the one that always comes through to save my soul. I love you so much big guy.