Pirate dinner show!! Go orange!!
Impromptu 3 Doors Down concert…um happy girl! #houseofblues #orlando
If you’ve never seen her perform, Cassaddee Pope has got some pipes. Got to meet her after the show. #houseofblues #orlando
What a doll!
Have you laughed yet today? Happy Monday!
Putting the fun in Ele-FUN-t! :)
Visiting a roadside attraction. Taking a moment to truly enjoy the moment will always result in a smile. I know I smiled today.
As I scroll through Facebook and Instagram, the threat of nomination has been a weight on my shoulder for the past couple of days, yes I said threat, knowing very well that I am incapable of accepting the challenge. How do I address this to Facebook I wondered. At first I silently hoped not to be nominated in vain as last night I was nominated by a friend. I am grateful that you think of me and applaud your effort to promote the awareness of diseases and disorders but here is why I am NOT participating in the ALS Ice Challenge.
I live with Raynaud’s disease, for those unfamiliar with it, it is a disorder of the blood vessels in which the blood vessels narrow causing decreased blood flow. On a mild level it only affects the fingers and toes and can be more of a nuisance then a disability but on a sever level it affects the entire body causing pain, ulcers, frostbite, and hypothermia.
The threat that many only face in below zero conditions is a threat I face from something as simple as an air conditioner. I live in Orlando FL and do not use the central a/c in my home. I have friends who have laughed when I bring a blanket into the movie theater but I walk in with my head high with no shame at how weird it looks Because I know it is a reaction from those who don’t understand. What for some seems as an over reaction is simply what I need to keep my body temperature regulated.
I went through a period of my life in high school and college where I had to figure out what my body could and couldn’t with stand. It was often painful and emotionally tiresome. In college I had room mates who didn’t understand that although it was uncomfortable for them to be warm, it was painful to be cold. The sensation of a Raynaud’s episode is similar to an extremity falling asleep except the tingling when it wakes is magnified only to be compared to the feeling of being pricked by hundreds of tiny needles. There is also the shivering, a violent shaking that starts at your core and radiates outward making you feel like you have no control of you own body. The shivering physically drains you of all energy. With luck the episode will only last a few minutes but can often last hours.
This is just my experience with Raynaud’s and have heard many experiences that are worse In many cases requiring medication. Fortunately I do my best to monitor my body and it’s environment to keep me from that fate although it did involve a move from MA to the sunshine state.
I do not write this as a way to take any light away from ALS or it’s Ice challenge, I simply wanted to explain to my Facebook friends why I am not participating. Now that the threat is no longer lingering I will continue to support you guys in your efforts of this challenge and will donate to ALS when I get a chance.
A girl with Raynaud’s
Pre-wedding mani/pedi’s with the ladies.
Found a paint pottery studio, had to stop in. Pre-firing. Will have to pick up another time. #love #alligators