Daily Prompt/ One Word Prompt

DAILY PROMPT

Genie

Write a new post in response to today’s one-word prompt.

 

A Genie in a bottle. The first thoughts that come into play in my mind are Multiple System Atrophy patients, caregivers, families and myself. I personally felt, like a Genie in a bottle.

One illness, five little words, one doctor’s appointment can change everything from that day on. Watching little changes become bigger changes isn’t fun. Helping with falls, recreating meal preparations, setting appointments with various doctors, rearranging rooms, taking out furniture to make room for new furniture, interviewing caregivers, looking at any programs that may help off set expenses. This is truly a Genie kind of life.

Why do I say that? Simple, very few professionals have ever heard of this disease, which makes it difficult to get the help you need. There are improvements on literature, so your power becomes stronger with reading.

Getting insurance companies to understand this is a disease that needs to be covered is a task within itself.  I felt like the Genie in the bottle. I tried and tried, but the top of my bottle just wouldn’t pop off.

What is the best thing you can do if you need help but can’t find any? Join Facebook groups for Multiple System Atrophy. There are several.

This is one of the newest groups I created. A place to feel comfortable enough to speak your mind in private.

https://www.facebook.com/groups/374109256406780/

 

This is one of my older groups where you come to visit, be inspired and meet other families and patients.

https://www.facebook.com/MSAfeelingstressed/

 

This is a group for caregivers. It is an awesome group to find strength and answers in others who are going down the same path as you.

https://www.facebook.com/groups/168770156602557/

 

This is a group formed to learn more about Multiple System Atrophy.

https://www.facebook.com/groups/48942097968/

 

 

This is a group that I love. I found so much support here while my brother was still living. My friends from this group are still my friends today. A wonderful place to congregate.

https://www.facebook.com/groups/MSABuddies/

 

As you know by now, my birthday is this coming Saturday. I need still two hundred dollars to meet my goal. I am requesting a $1- any amount from you, my friends to help me reach my goal of $500.00. Can you help?

https://www.facebook.com/donate/566976957002931/

 

I wish this terrible, nasty, roller coaster ride of a disease on not even my worst enemy. Not only will it change your life forever; there will be times when you feel like that Genie in a Bottle.

 

 

 

 

 

Envelope Pushers

http://dailypost.wordpress.com

When was the last time you took a risk (big or small), and pushed your own boundaries — socially, professionally, or otherwise? Were you satisfied with the outcome?

 

The last thing I did that was outside the box of what I do normally is write two books and publish them. The first book I wrote, called Dahlia, is an inspiring story. I thought it so well related to today’s living. Problems arise and we can make one of two choices. We can stand tall and break through the rocky road, or we can give up and move towards something else. This is what this book is about. I have had quite a few compliments on this book which made me feel pretty good.

 

The second book was written while my brother Al was going through the struggles of MSA. I finished the book soon after his death. This is full of Al’s story of his life and how we dealt with the horrible disease, which is quite rare. I wrote this book in hope that other families and caregivers would not be in such fear as they walked with their loved ones through the different stages.

Both of these books can be purchased through Create Space or at Amazon.

I am disappointed with my second book. The book is alright. It is the hope that I lost from writing the book. My hope continued to the point where I hoped to teach others through a class or have professionals want to read it. I feel like I have not carried on Al’s name by helping others.

There is so little known about this terrible illness, but the ones who are familiar with it; the ones living through it, I wanted so much to be able to help them.