Monday, 24 September 2018

Dealing with Chronic Disease Can Get Old

This post is partly crowd-sourced from my online support group that's been together through thick and thin, even losing a few members from complications as we have talked over the years. Speaking for myself, writing this blog and choosing the pictures my old friends shared in the past made me feel decidedly better today.

Here's what they say:

Tricks seem to imply that you are fooling yourself or your body, and I just don't see that as a working strategy. With the brain in charge - it's a losing battle. So, the tips are better then the tricks.

I think eating ice cream would be appropriate.

We look like we are feeding monkeys when we go to the store because we buy so much fresh fruit and vegetables.  We have at last one serving of a fruit or vegetable and usually more with every meal.

Aging –you’re not old - I have read that 65 to 75 is "Young" old, 75 to 85 is "Old" and 85 plus years is "Very" old.

The above comments are from Dolly's mom.

We're not rewarding to our doctors.  When we start to have rheumatoid disease longer and things start to pile up....there isn't much that can be done. One of the reasons I haven't gone to another rheumy is that 30 plus years with r/a is a long time.  It’s all progressive.

I feel invisible a lot of the time.  I think you don’t get much attention if you're solo.

From Henry's foster mom

Some of us are getting a little tired. How many rounds is this fight? I am so tired of fighting for things now. I really feel like just giving in.

From our member in New Jersey

Not every patient is interested in their health care. I think more should be available to educate people on the necessity of taking responsibility for their own health. "No one cares more about your health than you do" is what I would tell them.
So on one hand you have the world where the doctor is seen as "God" and all knowing, and on the other, many people who have a variety of expectations of their doctor, including wanting to be part of the treatment process.
Then there is the minority who want to be really involved including having a voice in decisions that affect the health care system, and the policies that govern it. 

Even though some see them as "Not the unheard voices" they are still essential to pave the way for more patients and caregivers to take on a larger role. 

So I'd like to thank all the people who go above and beyond their expected roles, for doing the sometimes exhilarating and often thankless job of being patient and caregiver advisors.

To all the ants toiling away in models of collaboration

This blog is part of  RD Blog Week. See more here.