We Get By With A Little Help From Our Friends

In memory of my dearly loved, very first fibro friend, who we lost July 12, 2013- Midge Sherrill.

I feel bad that I could not be there for Midge in the end. It all boils down to losing the ability to ask for help and be understood.  When this happens, usually I have a bigger mess than before because I could not effectively communicate my request. I get into the biggest messes when dealing with companies. My friends and angels try so hard to help me.

I have gone from being smart with blonde moments to blonde with smart moments.  My brain is still here, but the maps to my memory are wrong. My personal GPS loses signal when I get overwhelmed.

I am like the princess in the fairytale who could still feel the pea underneath the forty mattresses she slept on and woke up bruised.

I have trouble walking, standing, focusing, doing repetitive motion,  and the list goes on.

Unfortunately, life right now is pea (AKA dragons) ridden. I am fighting as hard as I can to either flee the peas or slay the dragons.

I need some help, but I need to be able to communicate to my friends, guardian angels, and businesses I deal with the following:

  •  Pea Elimination Strategies
  • Dragon Slaying Techniques 
  • Focus Friendly Communication
  • My Strategy for an Auto Pilot Friendly Environment
  • Ergonomic Modifications for Zombie Control
  • How to Keep Hope Alive

More to come,

Peace,

Alli

Accessibility is much more than ramps, door widths and hearing impaired devices… 

<Here I sit, at Dekalb Medical Center, waiting to find the energy and focus needed to keep going.

I had been looking for the doctor who cared enough to listen and follow through with finding out what was wrong with me, since I was 18. I turned 54 in March.

My symptom list expanded past the many on the Fibromyalgia and Chronic Myofascial Pain lists years ago. I have gotten so ill, that one of my dear friends insisted I see an Ehlers Danlos Syndrome specialist.

She found him for me and he has been the Best Doc Ever. Steven A. Patten, MD is ginormously awesome.

I was scheduled for two tests here, today. I ran out of energy and balance before I got here. My brain doesn’t play well with others, including me. So autopilot had to take over this morning since I was not supposed to eat or drink anything after midnight. Caffeine is essential for my brain to switch from autopilot to any sort of functioning.  That’s on top of my ADHD/ADD meds.

I could not figure out where to go even if I had the balance and energy to get there. Actually got through the phone tree once, but she told me to go tell the Diagnostic Imaging reception to help me. I had already been there for help and had to leave before I fell down.

I gave it one more shot and apparently it’s just not their job, to help patients who can’t function, stand very long, or walk very far.

I have developed PTSD like symptoms from having to tell stories of my life going to hell in a handbasket, over and over again.

I still can’t negotiate the DMC phone tree. I am afraid to leave because I feel so dizzy.

Due to my invisible illnesses being ignored and untreated, I have been unable to work for years and trying to win my disability since November 2011. Everyday tasks are not simple, when you are a warrior fighting one or more chronic illnesses.

It can take hours, days, weeks, months, and even years longer than it once took to accomplish our goals. Especially with the deck stacked against you. 

Not everyone can get through the maze of life’s business. Brains aren’t supposed to take breaks to process pain but can’t keep up with repeated blows from everyday things that don’t bother Muggles. 

My brain has been jumped off now, so I am off to work on getting my show on the road, back home to Louisiana.

Peace,

Alli