Archive for ME – Myalgic Encepholomyelitis

Health Tool Kit: Reliable Resources

Screen Shot 2015-12-21 at 11.31.13 AMHealth Tool Kit: Reliable Resources to guide older adults to learn about medical stuff.

Doesn’t it just make sense that you would learn as much as you can about a medical concern? That information is readily available. Credible. Reliable. Current. Medical information you can trust – and your doctor should too!

Have you ever heard these exclamations by your medical practitioner? “Be careful of what you read on the internet. That’s just internet hype.  You can’t trust what you read; why do you keep researching this; you should stop researching  – it just scares people…. ”

Has the staff at your doctor’s office looked at you like you were the crazy, nagging spouse who interferes with doctor / patient discussions? Have you left a medical appointment wanting to dig deeper into understanding an illness, medication, or treatment plan?  Do you feel a nagging suspicion you can learn more about what ails you or a loved one? Read More→

Can You Feel It?

There has been a lot of noise of late about peoples opinions on various illnesses and diseases.

I’m sad about this whole thing. I can easily see how Robin Williams could succumb to the darkness. People spew all kinds of stuff about happy happy joy joy — but everyone of us is human. And as humans, it is every bit as normal to be sad as it is to be happy. IN TRUTH, you can’t feel real joy if you can’t feel real sadness.

I’m disgusted by the cold hearted comments about depression, chronic illness, and long term illness. I’m angered by a man whom, when I responded kindly to his claims that these diseases are not a tragedy but a choice, blasted me with a hateful comment that started by saying “Bullshit – you don’t know what you are talking about” — My heart was in the right place, but he can’t feel it. The ignorant have loud voices and hostile behavior only to cover their ignorance and naiveté.

What’s got me in a tailspin this week is not that this person matters to me personally, but that he might represent the majority. I fear it’s true. I know how cold people can be. It’s the kind of cold and calloused attitude that literally stops people from reaching out. It’s stopped me! 

It’s reminded me that I grew up believing I should suffer in silence, find a way to pull myself up and just buck up and take it like the dynamic and strong woman I am supposed to be. I didn’t know how to be any different until I finally learned.  It took years to let people in. I feel sadness for those who never open to the true joys of love and intimacy.

I do know what I’m talking about. I am the caregiver. I know what I am living with, watching, helping…. I see the demise of a wonderful man.
I know the financial and emotional devastation of long term illness — an illness that has no end, no treatment, no real cure that is known or common. Some days it’s like a slow walking death.

Often, we think losing an arm or a leg would be easier. Paralyzation would surely have it’s own problems, but there is plenty of help. Often we think Cancer would be better — there’s a better chance of recovery, a better known treatment, and a better quality of life. YES — I am serious!  Cancer ? Yeah there is a lot of help for the patient and the family, during and after treatment. And there is a lot more community support. Let’s face it – there is big money in fundraising for causes — and cancer is a big one.

But I know most people won’t get that, won’t want to understand, and surely won’t believe – because it’s scary as all hell and there is nothing that your words will do to fix it.

I know well the damage that stupid words cause. I know too well the pain uncaring idiots inflict when they play their ego strings hoping to make others hurt because they too hurt. I know that to many, invisible illnesses don’t count in the world of sickness and devastation.

I don’t want to let that one ignorant man ruin me — but it hurts. It shocks.  And what I need to know is that there are more good people out there who truly have hearts – who truly care – who have it in them to reach out to us. Because dammit – in the throes of this madness, it is just hard to reach out to others – especially when there are people like Gary Cotton, Rush Limbaugh, and a few other cruel trolls running around.

Indeed, what I need to know is that love is more powerful than hate, that acceptance is stronger than rejection, that people do care and are able to extend a little love instead of waiting for those hurting to ask for it.