March 2021 could be marked as a beginning, an end, a beginning of an end or the end of the previous beginning. This is not the first moment or season in my life that was life changing; even shattering. There was the one early in my life when I lost the one most dear through the untimely death of my mother. Most children have not lost a pet at that age. That single moment in 1966 caused my young mind to question everything and, these decades later, I still do. Now at this end of my life, this year's events measure similarly heavy.
This month is an awakening from that growing darkness that encapsulated my life. These 8 months have shaken me in much the same way that my 8 year old self experienced. It has been painful, but markedly different, in that loosing my mother was a quick blow that left an indescribable emptiness that has no end. This new experience has been progressive and by March 2021, I was trapped in a body that did not serve me. Surely because this is year 2 of Covid, many will wonder if it is related - either to the disease or the vaccine. It is not.
I could not find a name for it and neither could those who tried to help. We/I latched onto one, then another and then something else until finally late May landed me in the hospital barely able to move. It made no sense to me. A little rest and I would soon be better. Could it relate to the Shingles bout the previous year? It felt like a slow drawn out torture. Weeks, months, a year and no way to explain it to myself, let alone to others but some followed me down each odd rabbit hole. A little army of warriors surrounded me - many unexpected and new. A few found it too painful to travel with me.
Warriors!! In those dark endless days, prayer warriors were doing what they do and I had no idea the depths of it. Across the country - around the region - differing faiths - different languages - I was never alone even when I thought I would be. It felt endless but actually I can now see I am so very blessed.
In the fall, we thought lyme disease. Multiple tests - marginal but NO. Then January - some fluish/covid virus? No. Tests and first specialist - auto immune but not definitive. April - weaker and weaker but tests not indicating a serious track of follow up was urgent. Meanwhile, just a bit of activity and I was done. I could cook a meal or take a shower. I crawled up the stairs to get to bed if I didn't sleep on the couch.
By the end of May, I had a full body rash and landed in the hospital. That began the rapid succession of miracles of the sort that this blog often allowed me to share. But this is the biggest or certainly one of them. I will list them quickly including where we are now - emerging from darkness.
My hospitalist at UPMC NW was my doctor for 20 years until I retired and have appreciated VA health care. She knew me well and had no doubt something big was happening, even if the tests were not conclusive. She dug deeper and reached farther for answers. Finally, connected with a Pittsburgh dermatologist who is called by many hospitals to help with "difficult cases", the answer came after a biopsy, detailed special tests, collecting it all and a small team putting heads together. A rare 10 in 1 million auto immune disease called Dermatomyositis. Often misdiagnosed AS lupus, it's challenging to correctly pinpoint and address. Not curable but treatable. Most people have to wait years or decades before they find the answer so I am a very lucky one!!! I should be able to do many of things I love as I work with my team and do all that I can.
Except for my specialist team, local seasoned medical people say they never heard of it or never saw it. The rheumatologist said the test results showed something but the test levels did not match the very real symptoms that could only be measured with examination. No wonder no alarm bells went off with those who don't know me.
It's August!! I missed the summer camping and outdoor times I love. My circle of friends (at least in person) has been tight. Survival mode trims things down. But I am celebrating. It takes more time but I can write again. I can think. I can do more in a day than I could do in weeks. I'm looking around with great gratitude!!!! Love is pouring out in all directions. I am on my way back and getting out and about has been amazing.
Be warned I could now talk your ears off in excitement. If there is something you want to say, raise your hand and get my focus. Watch out for my humor. I have found ME - a me lost and found over many decades. Forgotten treasures and truths are here again. I am collecting those wonderful things. Like someone raised from the dead, my patience is only thin for wasted time. I lost too much of that and won't be quick to let it happen yet another time. My Mommy has had many talks with me about that this year and she isn't ready to have me join her just yet. Happy she comes to me in my dreams.
A long ago recording - A few missed notes and switched words but hope the story resonates. I have practiced it a few more times over the years.
https://www.youtube.com/watch?v=HAf9WjVbz_U
