Sunday, July 1, 2018

Sunday Stroke Survival: Waiting and Patience

I sat here this morning looking at a blank screen thinking of what I wanted to talk about and had nothing to say. I said a prayer for inspiration, as I usually do, and went out to pick bunny greens. The bunnies like them dew covered the best. Coupled with last night's rain, it would be good and wet for them.

I love watching the bunnies eat the long blades of grass. They'll grab one end and chew their way down. Similar to the way we eat long spaghetti noddles or ramen. They are just so cute! I also noticed the does have blown their coats. Coupled with the higher humidity last night and this morning, grooming them today will be a sticky mess.

I had a regular procession going to the picking area. Patches, my guardian cat, was right beside me as always. Herbie, my other guardian, was close by. He'd catch a scent of something and wander off only to return shortly. Little Red, the rooster, and his entourage of hens brought up the rear. They have come to expect the various caterpillars, snails, slugs, and worms whenever I'm in or near the garden. Houdini and Big Red, the other two roosters, and their two hens followed being careful not to get too close to Little Red's hens. He'd chase and fight them unmercifully if they did. But I'm side tracking into random thoughts.

In other words, it was a normal day. My arm wasn't spasming overly much for a change. At least it wasn't painful. My foot on the other hand, refused to straighten enough to even attempt putting on my new AFO. So what did I have to write about today as pertains to strokes, stroke recovery or living post stroke? Then I realized that this all was living post stroke. I'm going through the motions while in waiting mode. Does anyone really like waiting?

Post stroke you spend a lot of time going through the motion waiting. You do you exercises while waiting for recovery. You wait at the doctor's office. You wait while the bag boy at the grocery store puts your bags in the car. Now I'm waiting for the neurosurgeon to lessen my spasticity so I might be able to make positive strides towards recovery again and reduce my pain.

Me, being a proactive type of person, waiting is not something I do well. I joke and say that God allowed my strokes to happen to me to teach me patience. I've come a long way in the past six years, but still I strongly dislike having to wait on others. It's not like waiting for a handicapped person in a parking lot, get into their car and drive away so I can have their spot. Or, waiting while a Boy Scout help a little, old lady cross the road. Hey, I resemble both examples. (grinning) It's the months I'm going to have to wait before the neurosurgeon can even schedule any of the procedures they have to do. At their current pace, I may be able to get the Baclofen pump before the end of the year. Maybe. When you consider it's July 1st, that's a whole lot of waiting. The doctor wasn't in his office for the whole month of June! I guess when you want the best, you have to wait. Speaking of which, I still haven't heard from the Spine Center.

I guess part of it is my fault. I'm the one who waited five years to do this. Part of not doing this was fear of dying from the surgeries. I'll admit it. Fear is a liar! Decisions made after consideration is fine, but fear. Uh, uh. It's wrong and I knew this, but did it anyhow.

Because of my fear, the pain of the progressing spasticity had me up nights for hours on end. My days were filled with more pain that all I could do is grit my teeth and cry, or be zombified on drugs. I wasn't a happy camper. I spent five years already in this type of hell and finally wanted it fixed. So the idea of waiting another year is intolerable.

It has been so bad lately that I even thought about getting Botox again in the interim. But that would set me back another six months. I did call my Emory neurosurgery team, before my last regular neurology visit to check. So no wonder I'm in a catch-22 situation and feeling blue.

Nothing is impossible.
But the wait is killer!


  1. Fear is a liar and a thief.
    I don't like waiting on others either. I'm always on time - or early - and I expect others to do the same.

  2. Waiting sucks, this health care system is all about waiting, for appts., for insurance approval, etc. I hate waiting too but what else can you do? hang in there, and glad to see you got a whole bunch of animals guiding you! :) Don't be afraid and take care

    1. Diane, There are worse health care systems around the whole. For example, the UK and Canada has a social medical system. The wait would be six months to a year for the first appointment. If the doctor's judge there is a need for surgery and it's not life threatening it could be two years or more wait. It might be free, but their yax rates are 75%-80%. I lived in fear that Hillary's bill for social medicine would pass, but then we ended up with Obama care. Even those of us with insurance faced high rates and deductibles to pay for it.

    2. Jo, hang in there, know you are loved, and people (including me). Keep us updated. much love and light sending your way, you are special and an inspiration for so many..

    3. There's no doubt that I'm loved and prayed for here. I'm still here.

  3. Sadly, well-meaning people pray for patience for themselves - and others. Learning patience only happens while waiting for something you really want. I'm pretty pissed at whomever it was who prayed for me to have patience.

    I'm sorry you're having such a wait for your pump - I hope it lives up to your expectations.

    1. Barb, I learned a long time ago that when you pray for something like peace you get strife. It's the opposite to learn how to get what it is you want. God kept trying over decades in ever increasing situations to teach me patience, and failed until my stroke. That's worked somewhat. I have more patience than I did six years ago. The pump is only the first step. I'm really waiting on the rhizomtomy. The leg is doable now. An improvement is gravy. I want my arm to relax.


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