FYI – Neuropathy Awareness

If you see me stumbling down the street, NO I am not drunk. Please do not call the police on me or mock me. I have a serious health condition, a dirty little secret that few want to talk about – NEUROPATHY.

Unfortunately I could only find statistics going back to 2012, which means the numbers are probably higher, but even these numbers are staggering.

~ 20 million people with diabetic peripheral neuropathy (source: US Dept. of Heath & Human Services)
~ 86 million with pre-diabetes who are at risk for developing DPN (source: American Diabetes Assoc);
~ 21.5 million pre-diabetics have peripheral neuopathy (source:Neuropathy in Pre Diabetes Study);
~ 230,000-575,000 with HIV-neuropathy, or 20-50% of HIV patients (source: CDC);
~ 420,000 with chemotherapy-induced neuropathy, or 30% of cancer survivors (source: American Cancer Society);
~ 125,000 with Charcot-Marie Tooth hereditary neuropathy (source: CDC).

My neuropathy is two-fold. It began with diabetes. Just some tingling in the toes, nothing too serious and I was working to control my diabetes. And then in 2012-13, I underwent chemo for uterine cancer. The neuropathy quadrupled in my feet and went into my hands as well. Today, my hands aren’t affected much, but in my feet, it has worsened and crawled half way up my calves.

Neuropathy is a real health issue and it is immensely painful. Some people, like me, cannot take the drugs on the market to minimize the pain because of side-effects or because insurance won’t pay for them. And our suffering gets marginalized by those who’ve never felt the stinging burning or ice pick pain in the middle of the night. The alternating hot and cold of our feet and hands. Heat that only burns on the inside even though our feet and hands are icy cold to the touch. Cold that feels like someone has put your feet or hands into a fire and you expect them to be burnt, but there is only cold flesh. And then there are the itching, sharp jabs and the pinpricks, all isolated to one single location, but you cannot get it to stop, not by scratching or slapping the spot. No, it continues until it is done and you are just left feeling crazy in the head. It’s the jerking that really freaks me out and wakes me in the middle of the night. And I ask myself, just as so many have asked me… If my feet are numb, why is there so much pain?

So I was drawn to write this today because I watched a woman stumbling in the grocery store. She had a cane, but I could tell that her mind didn’t know where her feet were stepping. A passing shopper commented loudly to her companion, “They shouldn’t let drunks in the grocery store.” The companion said just as loudly, “Maybe I should call the police.” The woman shook her cane at them and said, “I am not drunk, you idiots. I have neuropathy in my feet!” The two hurried away down the aisle. I smiled and nodded at the woman and simply said, “Me too.”

I write this to simply ask for your awareness. Not everyone stumbling down the street or dropping things in a store is drunk. They could very well have neuropathy. They deserve our compassion and empathy, not our disdain and mockery.

 

 

Shoulders: Hillary Rodham Clinton’s Story

I wanted to leave politics off of this blog for a while, but this isn’t just about politics, it is inspiration for women everywhere who have become the first to set the bar high for other women. Watch the video, listen to Meryl Streep narrate this short movie. It is moving and INSPIRATIONAL! (Note: you will have to visit the blog to get to the video)
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the secret keeper

Meryl Streep is the narrator of this emotionally powerful short film.

Meryl Streep speaking @DNC for HRC Meryl Streep speaking @DNC for HRC

To prepare, here are some of Meryl Streep’s remarks at the DNC Convention 2016:

“Nearly 100 years after women got the vote, you people have made history, and you’re gonna make history again in November. Because Hillary Clinton will be our first woman president.

And she will be a great president, and she will be the first in a long line of women. And men. Who serve with grit and grace. She’ll be the first, but she won’t be the last.

'maggie the cat' ‘Maggie the Cat’ – Roars & Purrs

I must confess I have the Bern, but after listening and watching President Barack Obama speak at the DNC on Wednesday night 27th July 2016, His fire and the best speech I have ever heard him give or anyone give, not since Lincoln has a…

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The Sandbox Writing Challenge #51 — Movin’ On!

*cough* *sneeze* *cough* I am muddling through another of Calen’s challenge questions, even though my head feels like it is about to explode from a cold. No worries, dear readers, I have tissues nearby. This question is from Aug 9th and it has really made me think…

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What keeps you going?

I am a goal-setter and usually if I have specific goals laid out, I will stay pretty motivated. I also have several mental illnesses (Bipolar Disorder, Borderline Personality Disorder, Social Anxiety Disorder and OCD) which often derail my goals. When I am manic, I fulfill my goals in record time. When I am depressed, I don’t give two shits about goals. Most of the time I can balance out my mania and depression and still get a lot of things accomplished. I managed to do that while I was in college and for a few years after college. But I’ve had long periods of non-motivation too, like those years before college (I was a late-to-the-game college student. I didn’t go to college until I was 25) and that long 13-year marriage to a Narcissist where my life was a constant downward spiral resulting in 7 suicide attempts.

These days, there are several things that keep me going. As a coping skill, I’ve learned to use Mindfulness to keep me grounded and focused (thank you, Kathryn – my therapist). When necessary, I take psych medications (although I will often go off of them after a while because they fog up my brain and I cannot accomplish anything). But these days, the biggest motivator that I have is the belief that I have something to give to the world – definitely through my words, but possibly also through my actions and deeds. And although it may take me a few months to overcome my demons, I keep coming back and I fight through it until the demons sweep me away again.