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.

 

 

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02.22.16 – End of Day Notes

What I did today: I had a late start of things today. It was nearly 11 am before I rolled out of bed. Groggy. Exhausted. Doped-up. My feet gave me quite a fit last night. Burning. Nerves jumping. It was very late before I went to bed – around 2 am. The only way I would be able to sleep was to take an Elavil for my feet. Hence the grogginess, exhaustion and dopey feeling. Although I sleep like the dead from one of those little green pills, I do not actually rest. So I was up much later than usual and had to immediate make coffee and dive into my daily routine. Somehow, I got all of the writing done, but sadly the emails and challenge posts will suffer today, but then again, this is becoming a stuck record for me. Some day I will catch up.

What I learned today: A very groggy me makes many typing mistakes.

What I am most proud of today: Even with late starts and fog-brain, I can still write a decent story.

What did you do today? Learn any lessons? Have a reason to be proud? Share your thoughts with me in the comments!

#WeekendCoffeeShare – 02.13.16

weekendcoffeeshare

If we were having coffee, I would offer you some biscuits and jam with your morning espresso. We would sit in the sun room and enjoy the warmth in Winter.

If we were having coffee, I would tell you of the excitement that is bubbling up inside of me. Writing gives me the greatest pleasure and I have so many projects to look forward to this year. I would laugh, maniacally and rub my hands. And whisper that tomorrow will be a great triumph for me as a writer. It’s Bloody Valentine’s day, I would say in my best British accent. And then I would tell you about my upcoming Film-Noir WhoDunIt for March, the A-to-Z challenge and Poem-A-Day in April, and the anticipation of stories again in May. I would whisper my plans for a long hot summer of writing tales about Serial Killers, Angels, Demons and Vampires. Not to mention the chill of Autumn with poetry, Ghostly and Witchly tales. And end my enthusiasm by telling you of my wintery tales in outer space and of Christmas.

“It’s all planned out, you see,” I would tell you.

If we were having coffee, I would complain a bit about my feet, always about my feet. How they freeze and sometimes burn for no apparent reasons except that the nerves are all screwed-up due to neuropathy. I would beg you not to laugh as I told you of my escapades with trying to walk straight lines and maneuver through the house with feet that do not feel where they are going.

And finally, if we were having coffee, we would sit and sigh, enjoy the warmth on our faces, and reminisce about the old days when life was full of fun, when adulthood didn’t weigh heavily upon our minds and bodies, and when we could laugh at silly jokes without a care in the world.

If we were having coffee, what would YOU tell me? Let me know in comments!


 

This delightful morning coffee share is brought to you by Part-Time Monster and friends.

#joyfuljan – Day Twelve

For today’s #joyfuljan, I find joy in a little green pill.

No, it is not something gifted to me by an alien. Nor is it something harmful like a recreation drug. It is Elavil or Amitriptyline as it is also known.It is a prescription antidepressant drug for restless legs and, in my case, restless feet.

So why am I joyous about a prescription drug? I have severe neuropathy in both of my feet. If you do not have this, you will never understand the excruciating pain it can cause. Some days my feet just feel numb, like I am wearing several layers of socks. Other days I get shooting pains in my feet and toes. Most of the time my feet are just icy cold. But the worse pain comes when they are warm. I know, sounds a bit ironic, but it is true. When they are warm, they actually feel like they are on fire. An internal fire. Blazing hot. And nothing cools them down. No cooling gel. No soak in cold water. Nothing, except Elavil.

This burning mostly takes place in the winter time. I have no idea why. I go to bed with cold feet and sometime during the night, they get warm and begin burning. I am lucky to get two hours of sleep before this occurs. Most of the time, I just say Fuck It! and get up. But when I am truly exhausted, like last night, I force myself to take an Elavil. I say force because I do not like the other side effects from it: dry mouth, extreme sleep, and grogginess the next day. After tossing and turning for hours this early morning, I finally broke down and took one of those little green pills. The effect was almost immediate. Thankfully. This was around 4 am. I did not fully awaken again until 5 pm. Extreme sleep. And now grogginess. But for now, no burning feet and that is truly Joyous!

What are you joyful about today? Let me know in the comments.


 

Throughout the month of January, I will be celebrating Joyful January with Satya and Kaspa over at Writing Our Way Home