Early weekly edition of this blog regular.
Good morning! I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I’ve had significant health problems for almost two years. Initially, my rheumatologist diagnosed me with systemic lupus (SLE) on June 19, 2013. However, the medication wasn’t working and I kept getting worse and developing new symptoms. So, after second, third, and fourth opinions, my neurologist believes instead I have fibromyalgia.
In April 2014 I visited yet another rheumatologist who I hoped would be familiar with autoimmune disorders. Following an extensive intake during my initial appointment, I found a place where the doctor also listened to me. Based upon my blood work, the doctor believes I have Sjogren’s Syndrome. She also made the diagnosis of Fibromyalgia and pre-lupus. I’ve never heard of pre-lupus, but, hopefully it stays in the “pre” category.
Thank you for listening, each week I will have a new installment chronicling my journey- Which is now more frustrating than ever. I test positive for ANAs in my blood, but, the lupus tests are negative. There are several varieties of autoimmune disorders, with different caveats and health variations. Learning to live with the unknown has become my routine.
Stabbing Myself in the Pinky
No matter how much of a bandwagoner or trending news item about Robin Williams’ passing, I would be remiss if I didn’t share my thoughts on the issue. Of course I didn’t know him or his family personally, but, that doesn’t mean they are any different than any of the friends and family I hold dear to my heart. What I’m saying is, suicide happens everywhere.
I’m very sorry for his pain and suffering and for his family as well. They will all be in my prayers and thoughts.
Several years ago, a work colleague shared the difficult story of one particular Thanksgiving. You probably see where this is going. Everyone gathered and had the typical, usual Thanksgiving Day. Everyone was present and accounted for. After the meal and get together ended, everyone went back to their respective homes, nothing appeared unusual.
However, when her mother went to her home, where she lived alone, she prepared for the last day of her life. She wrote notes to everyone she needed to leave words. In her best preparation, she thought by her choice of location it would be easier on everyone. She took a sleeping bag down into the crawl space under the house, crawled in and ended her life with a bullet to the head.
No one knew it was coming. Or, maybe they did, they just didn’t recognize the signs.
Suicide is the last resort for someone who sees nothing besides the blackness and despair inside the prison of their mind. It isn’t just a withdrawal from reality, it’s a one way ticket to never feeling anything again. Which is ideal for someone suffering with the weight of their world and who needs a permanent fix. The fear of never feeling any better becomes the distorted finality and hopeless isn’t a strong enough adjective.
I’m not telling you anything you don’t already know.
So, let’s talk about my kitchen skills.
Sunday I was cutting up vegetables for a big salad. Our family was enjoying the company of conversation and I was attempting to talk and handle a knife at the same time. A very sharp paring knife. See, since I was a kid, I could multi-task. Nicknamed the “WiggleWorm”, man, I could keep ten plates spinning in the air (metaphorically, of course) and blow bubbles at the same time. I sustained that way of life until the dreaded autoimmune disease interfered with my plates.
All but one plate came crashing own around me and there wasn’t anything I could do about it.
The last time I had a family get together and attempted to talk and use a paring knife, I cut myself in numerous places over my hands while peeling, cutting, and canning peaches. NO, no blood was shed into said jars. I dismissed it as too many peaches, getting careless, yada/yada/yada.
But, this time in my attempt to hull a strawberry, I ended up stabbing myself in the side of the pinky finger with the pointed end almost to the bone. (I know to use spoons when hulling strawberries for the best result- I was in a hurry to hull and slice at same time.)
You see, with my autoimmune disease, my balance, coordination and plate spinning abilities are heavily off kilter. I wobble, trip over my own feet, drop things, completely misjudge my reaching and handling capabilities, and- you guessed it- stab and cut myself with sharp objects.
I cannot carry on conversation, look away, or anything that takes the focus of my attention away from the task at hand, literally. Either I will end up uttering jibberish, lose my train of thought, or physically, whatever I’m doing will be interrupted by my stumbling and fumbling.
It’s almost comical, in a Three Stooges or Wile E Coyote sort of way.
To me, it’s depressing. My entire way of life changed and I had nothing to do about it, I couldn’t stop it. What seems minor is huge when I know that the odds are heavily in favor of forever worsening and never getting better.
Insurmountable darkness, mourning my youth, chastising the woman I was to take multi-tasking for granted. Before I know it, my family will lock up all sharp objects and invest in plastic ware.
I can joke about it, and I’ve had to tell people more than once that I was not, in fact, drunk, just intoxicated by fibromyalgia and Sjogrens. Gives the phrase, high on life, a different spin doesn’t it?
I laugh to not cry.
Maybe that’s how Robin Williams felt. But, somehow, he ran out of laughs. Unable to muster another chuckle, all his plates came crashing down at once and he didn’t even have one left to spin. He was tired of picking up the pieces and gluing another damn plate back together.
It’s not an excuse for him, it’s my weird understanding of where he might have been.
I’m sad. Mork from Ork introduced me to the wonder of giggles created by Robin William. As the years rolled on, his many characters, personas, and influence on the world of comedy changed. We saw how to laugh through tears and his insightful roles, for it wasn’t just jokes he relayed, he gave us one liners on how to cope with life’s bullshit potholes- and busted plates.
I’m sad today for him, and everyone else in the world who feels despair. Find someone that loves you and give them a hug. They’ll hug you back and help you pick up the plates. I promise.