We traditionally celebrate Easter by eating a Turkey, being with family and hiding a basket with eggs and treats from the Easter Bunny for the kids. So I was thankful that in spite of my moms aching back she came out to see Cara and share in some tradition with her granddaughter and me this year. I unfortunately have a sinus infection and can not go see my dear sister until the infection is healed. Cara with her Multiple Sclerosis has had issues with breathing and choking and has had to be ventilated more than once so I will not risk getting her or any one else where she lives sick with my infection.
So our mom went to go and spend some time with her and when she went to give her a kiss, like she always does, she noticed that she had food caked around her mouth from lunch. I wonder how short staffed some of these homes are, not finding the time to completely wipe someones mouth after eating a meal. My sisters skin on her face was dry and flaky again as well, may I remind you that she has MS, she can not wipe her own mouth any more, so she certainly can not put face cream on her dry skin. This saddens and frustrates me to my core. We take for granted the fact that if we have and itch we can scratch it. People in the medical profession honestly want to help but simply do not have the time. Changing someones brief would definitely take priority over making sure someones mouth is clean just because of time.
We are at for front of many great solutions to the many issues that someone with MS has to deal with. We have re-purposed a pill that was once used for acne to slow down relapses and it is working, the more relapses the worse the disease can get. This is not true of all MS suffers, sometimes the disease doesn’t debilitate completely like my sisters has, but I am sure it sits in the back of their minds as a possibility. There are a lot of funds being raised by volunteers and people affected by this crippling disease that go straight to research for the cure and a better quality of life. The sad thing is, is that I do not see any of this affecting Cara. Day in and day out she lays stiff in her bed or in her chair, and she can’t even get a regular massage or an occupational therapist to see her on a regular basis. We would have to pay for these things out of pocket because they are not covered by any type of funding.
Something has to change. Hopefully in Cara’s lifetime. I so desperately want to say to her that it will improve for her and the cure is available now. Cara would need rehab in order to learn to walk and use her muscles again, as she has atrophied from lack of use and being in one position to long. I am pretty sure she would not have any issues with this. I think even if she could not walk again, just to know that the quality of life could improve in the extended care institutions and homes, that would be enough for her. Really this would be enough for most of us. It is not only MS patients that suffer it is anyone that resides in these places. Some of the people living in an extended care environment have to live many years like Cara has before they pass. I sure don’t want that for anyone and neither would Cara.
Thank you for reading this and if you are so inclined, give to the MS Society, we raise funds through various fundraising events such as then MS Walk, Bike Tour, Golf Tournaments and Burgers to Beat MS through A&W. I personally am raising funds through The Jaymen Built MS Walk this year in May my Team is called Cara’s Corner.
with my body
my mind and soul.
As the words
stumble and break.
My fear being
on which the truth does carry.
You had me and used me,
for that I won’t forget,
I must protect
never lie about a feeling
so I can become free of
the burden of you.
Shame and embarrassment
for at this age
I must learn
to express these feelings
it is to that end I yearn.
Sing a song
Dance with heart
Is really an art
Laugh with abandon
Relearn how to feel
When you realize this is real
Some of us give up
Some of us give in
Forgetting how to harmonize
So the demons won’t win
I am deeply saddened by the lose of Chester Bennington of Linkin Park, this one is a tribute to him.
via Daily Prompt: Harmonize
Today is two days after Xmas. Princess Leah is gone. Jabba the Hut anyone? She was beautiful inside and out. Come on, Lenny, Prince, and David, just to name few more. In my humble opinion, Princess Diana was the beginning of the end of my generation of people taught to be obsessed with attention. I would just like make it passed this years finish line before another exctremly influencial ‘Demi-god’ leaves us. RIP Ms. Fisher.
via Daily Prompt: Tart
A sour explosion as my teeth grind the mandarin wedge between them
Brief moment of disappointment in hopes for something sweet…
With momentary shock, I realize that orange peel had deceived me
My mouth is only searching for its next piece, baited and waiting
I pop in another, the chemicals coursing through my body
Much to my pleasured amazement, I push aside my caffeine
As the tart rhythm moves my body into the rising of the sun.JM2016
On second thought
I change my mind
To wrap in words unavailable
Only perception will warn
In ways so subtle
A second glance becomes
Change in direction
To where it is we are going.
via Daily Prompt: Second Thoughts
Don’t leave me hanging;
For your next best thing;
I will not wait as my wrinkles deepen;
You choose not to slow down;
As the voices bleed into the one;
Much to my dismay;
You will never wait for me;
Loyalty a thing long passed;
Love being the only truth on solid ground;
In this dream of a world we call home.
I am always trying to think of the next step. Especially with my life, I often wonder if people think the same way that I do.
I was born before a PC was as common in a home as a TV. I was elated as well as extremely curious when we got a TV with a remote and cable I was ten. So I seriously struggle ‘keeping up’ with this constantly manipulated technological environment that we seem to have created for ourselves now.
It is hard to commit to the next step for me, this world we now live in seems to be full of people who lack impulse control, so you are never really sure where you stand. What is even worse it is okay! I can feel like a million bucks and then turn on my computer and in a matter of seconds, I am over the hill, I have a disease, and I feel the need to psychologically re-evaluate all my relationships.
How do I teach my daughter that the things outside of her aren’t as important as her self esteem and self worth? It scares me and yet I welcome the challenge with love and deep commitment. I am a Jellyfish or a Helicopter Parent either way, my daughter, like my son, will know that loving oneself first is the most important thing when it comes to taking another step in life. This is a tough lesson when faced with only a faint light a the end of any proverbial tunnel. Especially after repeatedly fulfilling the demands and needs of others before considering your own.