11/12/15

Out of sorts today

But then again, what else is new?

The high point of many mornings is sneaking downstairs and finding Mom still asleep. It gives me a little bit of time where I can do a few things I want to do rather than watching cooking shows with ingredients I wouldn't use even if I could afford them. (I'm sorry Food Network, you just don't cater to the "My kid is sick, I can't afford my car payment and medications, let alone what it takes to make a decent lobster roll" crowd.) I didn't get that today. And shes not feeling good, and I'm fairly sure she has an infection which makes her normal OCD ten times worse. Next week, she won't remember that she's the one who boxed up all of her lotions this morning. Heck that may happen later today.

Anyhow, while I'm downstairs first thing in the morning, instead of dragging the computer down, I use my phone (yes it's back on and yes I did end up having to borrow the money because my kid ended up stranded for an hour and a half. It ended up being more important than I thought) Today, like many days, I saw something posted by the media that irked me. Usually, it's the quick impromptu questions "Does Starbucks new red cup offend you?" But today it was a reporter asking people for interviews from people stuck in traffic after an accident in Pittsburgh. Pittsburgh traffic is horrible, like many bigger cities, backed up traffic really shouldn't be a breaking news story.

The media should know that it has amazing power with it's voice. People listen, they are moved to react to the stories. That voice could be used for far better things than backed up traffic or a companies decision to use a rather attractive cup void of decoration. We have an average of 20 + people dieing each day waiting for organ transplant, and a severe shortage of organ donors. There are so many myths concerning organ donation that people are scared. Where's that story?

CRPS. November is CRPS Awareness month. It is rare disease, and even some healthcare providers have zero understanding of it. I was recently extremely impressed with an intern who took care of J at his last admission who obviously took the time to do quite a bit of research on it. I was so impressed that I sent in a card to the hospital about it. UPMC needs to snag up that young go getter and never leave him go. And if they don't, they are fools. And no, I'm not sharing his name because I choose to be selfish and keep him where he is as long as possible.

It would mean so much to the CRPS /RSD community for local news outlets to run stories about those living with CRPS/RSD. People do not understand how anyone can live in such pain, and these people end up being looked down upon, called liars, and accused of drug seeking when they only want enough relief to be able to function in the world.

Medical Journals and papers are reporting on the care of Chronic Pain patients in the wake of the war on drugs, yet local outlets and major media are completely ignoring the fact that pharmacies are turning away or making it extremely difficult for these compliant patients to get the medication they so badly need.

We're coming up on the holiday season. We have record numbers of families who need help. These people couldn't care less about the red cup because they can't afford it's contents let alone a holiday meal in the wake of the bird flu epidemic or even anything to put under the tree for the young children who want whats being advertised on TV. Our middle class is disappearing. Medical expenses are on the rise, Social Security isn't getting a cost of living raise, yet medicare and insurance premiums are raising. Where are those stories? Where's the pressure on politicians to make those changes? Where's the real questions instead of BS about Hillary's hair and if she wears a wig or not?

The media is wasting it's impact on society. And it really is a crying shame. The stories are out there and they wouldn't be hard to find. And they would do so much more for society than someone stuck in traffic this morning.


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@TerrorMom

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I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 
 

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