Happy Monday! Happy belated Easter. I hope you had a glorious time. We actually had a lovely weekend. In sad news we went to Perth to Great Grandmas funeral. But don’t be sad, it was such a wonderful celebration of her life. I’m so happy that our children had this year to get to know her better. We’ve taken to calling her the spark, and it was so true. I looked around the reception at all the people who had come to pay their respects to the family. 11 great grandchildren running wild underfoot. It was just perfect.
As a side note I’m not sure how I ended up sitting in the front row but there we were, front and centre. I looked down and Lily is patting her casket, just softly stroking it. Jack was horrified, oh my gosh he’s so proper. Just like his daddy, lol. At first I was like no, no, no. But then I thought great grandma wouldn’t mind. It’s was pretty sweet, in an obviously super weird way! I only hope I am so loved.
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In other news, I finally saw a new surgeon!!! Get excited you guys! I didn’t want to let my hopes get up, but at the same time I am at the end of my rope. Everyone has pain limits and I’m at mine. I can’t increase my drugs anymore, my function is going way down. I didn’t want to get my hopes up but still, I wanted to be so hopeful. Even if he couldn’t see something to fix surgically maybe he could send me somewhere, or to someone who just might be able to fix me, just a little. Last week I was so crummy and getting worse so we did a last minute MRI, just to make sure the surgeon was getting the most up to date information.
The appointment went so well. I had an idea how it works. Usually a resident examines you first. They come in, you tell your ‘story’, they examine, then doctor comes in, does the exact same thing and you go from there. This started the same. The resident came in, she was kind, empathetic, non judgemental and completely lovely. She examined me and then went to discuss with the Dr.(neurosurgeon). They came back in with a little team but there was no second exam. He said he’d heard ‘my story’ and looked at my MRI and we went straight into discussion of what to do. I’ve been saying for so long ‘it feels like something is touching my spinal cord!’ Well it turns out it is. He’s going to do 2 levels of fusion, one above and one below the previous fusion. I’ll have 3 levels fused all together. What does that mean? They are going to remove the bulging discs in my neck, replace it with bone and metal. What’s the goal? At this point it’s not realistic to think this will heal me. All we’re looking for is preventing it from worsening (which I can’t handle, there is not enough narcotics or alcohol in the world for this to get any worse) and quality of life. I would love a little more quality of life. I want to be thin and bouncy, I want to do some volunteer work, maybe be a patient advocate. I want to stand up paddle board. Take my kids to play dates and have enough energy to go grocery shopping in the same day. I just want a quiet simple little life, with coffee dates and bonfires, maybe some reno projects? And that doesn’t hurt so much.
So get ready, we’re doing this. Like ASAP! Surgery is next week. I know right!!! Stay tuned on FB and IG for stories, as always. And anticipate more blog posts as I have a little in bed/recovery time coming up!
Hope you’re having a great week!
With Love Kate