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.
This is one of my older groups where you come to visit, be inspired and meet other families and patients.
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.
This is a group formed to learn more about Multiple System Atrophy.
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.
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?
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.