Saturday, February 1, 2020

All I Want for Christmas

Six months in and headed for the holidays, more tests, more doctors, still no answers but fewer fits at least. I mean, they'd still happen, randomly, sometimes a whole week apart giving me hope that whatever it was had maybe gone away. Then the giant would be back, squeezing and squeezing and my hope would dim, sometimes crushing me but still, a tiny light stayed. I was determined to live, determined to fight, determined to cherish every second of my life.

Another MRI, this time with contrast (dye), revealed that the lesion had grown and invited some friends. It was progressing and I was terrified but...I'm also strong, and determined, some have even used the word stubborn. I kept working (pulling over when the giant came and sometimes driving through him), I kept being Hannah's mommy, I went to every gathering, I just. kept. moving.

The neurologist wouldn't tell me exactly what they were looking for with all of the tests, it was more ruling things out. It was around Thanksgiving before words like lupus, multiple sclerosis, fibromyalgia, chronic fatigue, etc., started coming up during my appointments. There was one last test he wanted to run after which he could likely make an actual diagnosis. He wanted a spinal tap. Two things I knew about spinal taps, 1) it was like the epidural I had while in labor with Hannah and 2) during a procedure on Craig's back, they punctured his spinal cord - to this very day, I've never seen anyone in that kind of pain. Not much motivation there.

Another thing I knew was that if I was going to die, I didn't want my family to know before the holidays. I didn't want that hanging over everyone. So I stalled. The doctor wasn't happy but he couldn't force me so he made me promise to call right after the new year to set it up. Sure, I'd do that.

We went to see my grandparents that Thanksgiving just like always and I swore everyone to secrecy. I loved them more than anything and didn't want them to worry about me. If I felt a fit coming on, I'd hide in the bedroom until it passed. If  I stumbled, we joked about me being drunk. When I cried because I was afraid it would be the last time I ever hugged them, I went on the back porch. When we left, I think I cried all the way to Shreveport.

Even though we didn't have any answers by Christmas, there was still a rain cloud over our celebration. Hannah and Maddie were both 3 years old and Connie was pregnant with Abbie so everyone tried to focus on the girls. Watching them open presents and giggle, both of them so incredibly beautiful and full of baby joy was probably what kept everyone going.

While we celebrated at my house, I couldn't do much due to the awful fatigue I'd been experiencing and, of course, the ants. There were thousands of them crawling all over my feet and legs. It was distracting, maddening really, and while I can't say it actually hurt, it certainly didn't feel good and made it difficult to walk or stand for any length of time. There was also this annoying dead spot in my thigh and my left arm felt  "otherworldly".  But hey, I was alive for Christmas and I had successfully avoided the spinal tap I was sure would confirm that I would die soon. I was winning.

Right up until the time came for me to open a surprise gift from Craig. Mind you, my husband is terrible at gifting. He knows it so it's okay that I've said it. If I don't tell him exactly what to get, he now just gives me a gift card instead of the random, crazy things he used to get me. No more giant pink and blue southwestern style vase that matches nothing in our house; no more bubble heart earrings. Stick to the list honey. So this year, our 10th married Christmas, my husband decides to give me a beautiful silver link bracelet with a heart shaped charm that reads "more than the sky". That is how much we tell Hannah we love her. Not to the moon and back nor a bushel and a peck, more than the sky - there's a difference.

I'm so tired, I hate the giant, I'm sick of the ants and I'm scared to death, I take one look at the bracelet and completely lose my mind right there in front of my whole family, the babies, amidst the gifts and torn wrapping paper and love, I broke. Why did he have to pick this one Christmas out of so many to give me something so sweet, to get it so right?

I. Want. To. Live.

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