Friday, February 21, 2020

D Day

Sometimes life attacks me. The final week of February, 2000 was a full-scale assault. I took a new position at the company I worked for, my house flooded, my stepson got suspended (again) and my test results from the spinal tap came in.

The nurse called and said the doctor wanted to see me the following day. I said "I'm too busy, can it wait until next week?" (Obviously, I was back to stalling.) She responded by putting a super mean nurse on the phone that told me it could not wait, they had an opening at 10am and it was important I come in.

If you know me at all, you know that I'm a bit stubborn. I don't like to worry anyone and I like to stand on my own two feet. Has all of that gotten me through life so far, yes; do I push it too far at times, absolutely. 

I insisted on going to the doctor alone. No husband, no mama, no sister, no friends even though they all offered to go with me. Even today, 20 years later, I have no idea what I was thinking but at the time, it made perfect sense.

When the doctor said "you have multiple sclerosis", I didn't have much of a reaction. It didn't exactly come out of the blue, I'd been expecting it and honestly, I was relieved that it wasn't Lupus. Somehow I'd been more afraid of that diagnosis so, yay for me!

He went on to tell me 1) stay off the internet - there are two websites allowed: WebMD and the National MS Society 2) get a 2nd opinion, it helps with acceptance and 3) there are medications available that might slow the progression of the disease, you'll need to pick one.

I left his office with a stack of VHS tapes and literature to research which therapy I wanted to go with and a flyer about a Walk the MS Society was putting on in March. Arms full and mind reeling, I headed for my car. As I crossed the parking lot, I heard this sound, this sad, mournful, awful noise that broke my heart. All of a sudden, Craig was walking toward me and it shocked me enough to realize the sound was coming from me. I immediately pulled myself together. 

He had apparently decided I should not be alone no matter what I said and was parked beside my car, waiting. He helped me put everything in my trunk and then just hugged me tight which almost made that sound start up again so I pulled away and followed him home.

After calmly filling him in about the diagnosis, I decided I had to tell Mama in person so I drove back to work and pulled her into a conference room, still calm and matter-of-fact. Next up was Dick, my boss/dad/friend/confidant/mentor. As always, he assured me everything would be alright and I almost believed him.

My Connie took it the hardest. Turns out Mama had already talked to her so she was in tears when she answered the phone. Inconsolable really, so I had to tell her that I hadn't just been told I had 6 months to live or anything and we'd deal with whatever was to come, together, just like always. I would be okay with her by my side. 

The calls to family and friends continued and I never cried, never let anyone know how frightened I was, just assured everyone that I was fine and would deal with whatever was to come.

And. I. Have.

Saturday, February 15, 2020

This is Spinal Tap

If you look it up, here's what you'll learn about the risks of a spinal tap:
When spinal fluid is removed during a lumbar puncture the risks include headache from a persistent spinal fluid leak, brain herniation, bleeding, and infection. Each of these complications are uncommon with the exception of headache, which can appear from hours to up to a day after a lumbar puncture.

Hooray, sound like fun! Let's do this!

My memory is blissfully spotty on this, I don't know if they gave me something to make me loopy or if it's just the brain's way of protecting the psyche but whatever, I'm grateful. I remember lying down on my stomach on the hardest surface ever known to man. Then, suddenly, I was in recovery and could hear the girl next to me crying through the curtain. I could tell she was in a great deal of pain so I asked if she was okay. She had just had her own lumber puncture and overheard her tell the nurse she was there alone. She was so sad,I tried to distract her until the nurse brought Craig in to get me.

He got me home and into bed where I had to lay flat for the next 24 hours. Next thing I knew my sister came in and deposited the tiny, warm bundle that was newborn Abbie next to me and suddenly, all was right with the world again. Napping with her for the next couple of hours was the magical healing potion I needed. It reminded me that whatever the results, I would be okay because I wasn't alone like that poor girl at the  hospital. I had a large network of support and so, so, so much love.

Screw. You. Spinal. Tap.

Monday, February 10, 2020

Lord, I Hope this Day is Good

Obviously, I lived through Christmas and thankfully have lived through 19 more of them. There were days I wasn't sure though, especially pre-diagnosis.

For months, every morning on the way to work, I would listen to that Don Williams song Lord, I Hope this Day is Good. That's all I was doing, hanging on a day at a time, hoping for the best.

I'd get home at night and be so exhausted I could barely move. Craig took over bath time for Hannah but I still got the first clean kiss afterwards. Mama took on laundry and most of the house work so I could spend my evenings playing with her. It wasn't the rough-housing we used to do because I would easily fall over and my left arm had very little strength left but I could play anything else she wanted! I still rocked her to sleep but once she was out, I was stuck in the rocking chair until someone happened to wander in to get her off of me. I tried hard to enjoy every moment I had with her.

I put off the spinal tap as long as possible after the holidays, always finding a reason to wait. Finally, the end of January, Hannah's 4th birthday behind us, I didn't have anything else to hide behind so I scheduled the appointment for mid-February. 

I was so torn between wanting an answer and fearing the answer, feeling out of control but fearing the loss of control that it finally got too much and...

I. Had. To. Know.

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.