Ohio Part 1

I found a renowned neurosurgeon down in Ohio. I'm trying not to get my hopes up but I admit I am. That is not a good thing. The worst thing that comes from hope in this situation is crushing disappointment, again. The best is more treatment and an expectation that it will work. When I say crushing disappointment I mean that literally.  It's been a total of 5 years of treatment, pain, prayer, help, judgement, surgeries, complications, infections, more meds... you get what I'm saying.

Don't misunderstand and I think it's easy to misunderstand. When someone is chronically ill it's easy to read those words and come to the conclusion that person is trying to gain sympathy or they are wallowing in self pity. That couldn't be farther from the truth.  It's our reality - it's my reality.

I've never experienced anything like I have these past 11 months.  To say I've learned a thing about self-care is an understatement.

I have rediscovered old music, reading & audiobooks. I’m redesigning my bedroom, working through my pain with meditation and pretty much overdosing on Netflix series.  It's all about distraction when the pain comes. When it comes now it's fast and furious. It can come with a layer of numbness on my cheek which feel bizarre. Underneath is an electrical storm (of pain level 8-10) zaps of pain that come one after another after another. These last for a few hours to a few days without any pause. That's why I'm hopeful for another neurosurgery. 

This surgeon does a procedure where he implants a device in the base of the brain that senses pain coming on and stops it before it continues throughout the nervous system. Many brain tumor patients have this surgery which I may qualify for but I don't know how effective it would be on my trigeminal neuralgia. Another possibility is another Microvascular Decompression. I've had this neurosurgery on both sides of my brain already.  Sometimes, doctors will do the surgery twice. I had a terrible experience after my last MVD on my left side and I remember telling Jacob, "I will never let anyone ever touch my skull again, ever!" Here I am. Determined for this new surgeon to perform this procedure once again. Desperate people do desperate things but I won't regret it.

I'm in my hotel room in Ohio right now. I had a few hours in a fun pub with some great food and girlie cocktails. It felt... normal. I didn't feel like a patient. I didn't feel sick on the surface. I always hurt, right? Especially today. I had to take percoset today but I truly had invisible diseases. I got "gussied up" as my Grandma used to call it and went out. I hoped people would see me as someone who was like them.

I try not to think of myself before my diagnosis. How I was. It just doesn't help me.  I have enough judgement in my life that I don't need my own voice adding to it. I'm working so hard on being gentle with myself, staying in the present and honoring my body. It's cliché but none of us know what life will throw at us.

I remember when the boys were little and were hospitalized in ICU every year until they were 7 years old. I felt so scared for their little lives. They were critically ill on more than one occasion. Jacob came close to death at 4 months old. I made a decision early on: I could either choose to be fearful that they could die an early death or I could enjoy their lives each and every day, accepting I have no control over anything. I had to let that fear go. It was casting a cloud over everything.  I wasn’t able to truly let that fear disappear - with chronically sick children that’s how it works and boy have they been sick - but it doesn’t have control of me. It doesn’t create anxiety in me like it used to.

Baby steps. Right?