Thursday, October 4, 2012

Part II - Let's Put on Our Superhero Gear: The Cape

It's here! Without further adieu...

The latest flare rudely interrupts a day out with family and later a pain jolt nearly rockets me off the sofa  into the ceiling. I am called as if from my body's pager alerting it is time. Pain has arrived once again. It waits for no one and on it comes. Part of the body tenses and breathing turns rapid. I gulp breaths or even hold my breath, awaiting the next pain tremor.

Nerve Pain 101 A slideshow from explains nerve pain in detail, its triggers, conditions that cause it, treatments, etc. 

For me, worry mode begins. I wish I was more chill, say more into meditation or prayer mode. I am trying but my concentration breaks too easily. My thoughts invade like this: "If I have this surgery or that surgery will I finally be better?" or "Time is lost each day. I want to work and I can't!" or the often-times tear-inducer "What about my goals and dreams... Everything, it seems, is gone! My real life has just stopped. The first half of my thirties... Poof!" Talk about a magic trick!

Will I rest tonight? Who knows... Staring at the clock, hour after hour tends to go by, swallowing pain pills every three to four hours. People marvel how I can take pill after pill tiny tablet to capsule without water. I marvel how my liver and my body overall can last this long on such a routine of high doses of opiods accompanied by anxiety and depression medication. I've been taking a dose of hydrocodone off and on pre- and post-surgery since I was 18. I have had to up the ante now the past three to five years given my pain has surged like something from a fireworks stand on the Fourth of July. We're not talking sparklers either!

Day after day of pain, a patient - at least me - is on HIGH alert like after you go see a scary movie or a political thriller - (one of my favorite genres) you are a bit more jumpy or on edge. At least the day after thinking about it. Around every corner, every bend, even sitting in a dark corner, down a secluded hall... For me, I'm propped on the couch, my usual MO, and the burning will come followed by numbness so intense I have to drop the book, magazine or iPad immediately. Fire. Alarm. The surge of pain in my arm is hot, a fire blazing into my hand. Then as quickly turns numb, unfeeling, the fire is out.
Later, another jolt of pain arrives and the ol' body winces with each passing voltage in the knee, back, shoulder, or neck. Instead of body jolts, I want my life jolted back... brought back, a shred of recognition. Something. A flicker of hope... Yet, I know I have a long way to go from where I stand but it is a shorter distance from where I stood months, years ago.

Writing in general makes me feel alive, so starting this blog, The Healing Redhead, has been a blessing this year. I wished I did have more stamina to do more fiction, more of my book or more of my hobbies like exercise, cooking/baking, and crafting. It can get frustrating when I have so many interests and ideas and my body will not cooperate, support me. But that doesn't mean I can give up, right? Right? I can't hear you!

That is where comes in handy. I may not feel like hiking in Yosemite today (first, I need to get in shape a bit) or even hiking local hot spots, a favorite pastime, but that doesn't mean that the California dream or weekend hobby is lost forever. I surely hope not! I have always wanted to see Yosemite for myself because of Ansel Adams' work. His photographs have always mesmerized me and the way John Muir wrote about the area has motivated me to put this beautiful postcard destination on my ultimate bucket list! I gotta go! Every time I see a photo it reinvigorates my spirit and determination!
Yosemite National Park 

Yo, how could you NOT want to go too?

For years, I have had New Zealand on the list as well! I mean it's hard to resist. I could talk to friends, family and even [blush] strangers about Christchurch and its surrounding beauty. I was INTO NZ! Its tourism board should SO cut me a check. I could go on and on! I even had honeymoon plans and no honey! How funny is that? I really wanted to go! Then, I saw this special on (of ALL things!) a shopping channel {blame my Mom!} about Vienna, Austria. Shock: I didn't buy anything! I did come away with an absolute LOVE of Vienna and its overall aesthetic beauty and its history, architecture, and performing arts. All from a shopping channel. I KNOW! CRAZY, RIGHT? It's not the History Channel by no means but it gave me enough nuggets of info that I started my own discovery of Austria. So move Vienna up that bucket list, y'all! New Zealand got put on the back on the plane, so to speak.

It is so important to have a few dreams you hold close. If you aren't sure what you want, may be perfect for making a Dream Board or Bucket List Board or an In the Future Board. It can be small items or big items or a combo of the two. I even include a board of supplies, helpful gadgets, facts, inspirational quotes that might be helpful for people with chronic pain. You are welcome to check it out! Find it located on the "The Healing Redhead" board on my Pinterest account. Repin all you like! Remember: You can check out my Pinterest site any time. Just click the big red P to the right. ***If you have a favorite chronic pain product and/or recipe, e-mail me and I will feature it on my Web site and on Pinterest. Of course, I'll give YOU all the credit!*** Just e-mail:

The areas in my body begin burning, jolting, and misfiring. It seem like the Devil's work and I never remember signing a contract with that red monster. The pain zaps in my back and in my leg. After being so patient, I am about to lock horns with that pain scale or whoever seems to be in charge of it. Day after day after day I am met with excruciating pain. I might get a break in between but you know The Pain with a capital P will be back you just don't know when...
It does happen. I finally let loose, l let the tears fall. I may seem strong in public at the doctor's office, grocery store, running to the pharmacy, and generally with people I exchange conversations with at the check-out stand, restaurant table, or at the occasional trip to the yogurt shop. It is a quiet sob and the wetness on my cheeks is cold against the forward motion of the standing fan, oscillating, oscillating. I would never put an enemy through this kind of pain... Well, except that ONE gal from high school... Kidding, only kidding. Seriously, no one should go through this. No one. When nerve pain strikes, it is mind-blowing, the color red, the word blazing, the word unrelenting... It is real & it takes everything a patient has, physical and mental, to endure its wrath.

With Schwannomatosis, the condition ( I have, tumors press on and against nerves & that is what causes my nerve pain along different parts of my body. I am wondering, how many tumors I actually have in this 5'9 frame of mine? Yet... Do I really want to know? Doctors have always shielded me from the big number and focused on the case at hand. That's when there's a plus side to the invisible nature of my condition. I don't have to know EVERY detail. I need to be concerned about the ones hurting me and the ones that might turn malignant although I've been told the chances are low that will happen. I still think it is important to stay on top of things and keep going to my doctors and surgeons on a regular basis and do my scans. Although, it is my most dreaded chore.


I press my fingers at different points on my body, searching like a physician or perhaps the TV crime show coroner who investigates a body looking for answers posthumously. Yes, I just said THAT! Wanted to make sure you were listening... or still reading! {wink}

I press just below my hip bone, a-ha, a possible growth. That explains all the pain around my right leg -- one of the areas of pain. When I am in pain, I tend to need quiet around me and I am still, quiet myself. The television cannot be blaring with yet another episode of Law&Order, its special theme song and signature "dun-dun" it is so famous for around the world. Even as much as I love hearing the lil' nugget of pop culture go by, I have to focus on my body and the pain. Instead of hearing the two single notes and breaking into a grin, my teeth clench and my body braces for the next attack. I can't afford a smile right now. If I stay still sometimes, I feel as though... ZAP! ZAP! Two different areas. Zap! In my hand. I feel as though I will be rewarded. With no pain. Not the case this time. Holding still doesn't mean anything for me. It just psychologically helps me make it through the tough nerve zaps, the ones that shoot and arc through my body as if something is chasing it, hunting it down much like so many of the "perps" in Law & Order Criminal Intent, SVU and my new favorite, the British Edition on BBC-Television.


It can be so difficult living day-to-day with these pain conditions, caring for our own families, if we can, dealing with the guilt if we can't, and going to doctor appointment after doctor appointment, scheduling, getting the bills, refilling prescriptions, and just living day-to-day.
My nerves overwork themselves each time in the big waiting room and the little waiting room because you never really know what Dr. _ is going to say or prescribe this time around. I try my best to read or text, distract myself somehow, but I'll be honest, it rarely works whether I have the 8:15 a.m. appointment or the 3 o'clock. I tap my feet and wait for the nurses each time to read the names from the plain folders like we, the patients, are award receipts (how ironic) and later in the little patient room, I'm staring at the plain white door and waiting, waiting, waiting for it open... Then, Viola, the door finally opens! Hooray, by then you feel it is time for a party or cocktail or mocktail at least. You've waited so long.

Even though we might have unforgiving illnesses we still need to make time for laughing, relaxing, working toward goals (big and small), and loving life -- even if that means just a mocktail or a trip to the craft store, that's something! So, even if I didn't see that Law & Order because of my pain I can catch a show spin-off or DVR one, no problem. It's not very hard to find that show on TV! Ha! So, please just spend some quality time with those you love & with yourself. You have to spend that awful time in pain, too, right? You know when the pain triggers and emotions get the best of you. Don't begin to resent yourself. The worst possible thing we can do is give up on ourselves. We might not be able to pursue certain dreams right now but that doesn't mean we can't dream at all, daydream, brainstorm, pin, read, rest, watch, and best: DO at least a little... Enjoy a hobby. Travel to your favorite hideaway or a new place with a beautiful vista, your Vienna, your Yosemite! It doesn't even have to be very far away. There are quite a few places locally I want to see and experience in the coming months. If I do 'em, great! If not, they're on the list for next time! Go at your own pace & have fun! Fingers-crossed, it's a pain-free adventure!

Saving the World
with Capes n' Tiaras
(via Pinterest)
There's a quote I spot every now & again about owning a tiara and a cape and if you had those two items (and wear them!)
YOU COULD / CAN RULE THE WORLD! Some days our capes go missing or we leave the cape at the cleaner's but most of the time you know what? We just have to strap on those invisible capes and do the best we can. We're strong! We battle the beast of pain & chronic illness regularly... And NOT just one month out of the year! This is a 365 days, 7-days-week, 24-hours-a-day (better-believe-it) condition! We have battle scars to show for it! But we are not quitters! We want life, we're in it! So tiaras & capes, why the heck not! Even with invisible illnesses, We Can RULE the world!
Who's with me?

What color is YOUR cape? As Pinterest attests, Glitter is A color! I think I like midnight blue! How about you? **Men, you gotta improvise! You got the cape! Maybe stellar shoes, or a hat that is a show-stopper! Tell me in your comments below. I would LOVE to hear 'em!

Let me just say... Awareness week may be over, but that doesn't mean we stop. If we want the stigma to change we need to educate and make Invisible Illnesses visible by showing the world WE ROCK & that we ARE visible. We need to make our stories visible. So... on days we don't feel good, let people help. I've noticed with my Mom if I tell her how I feel in terms of the pain scale (1-10) she understands better than me saying, "The nerve pain is acting up again." Plus, it helps me to quantify it and compare whether my pain was worse or better than the last pain surge. This may not work for everyone but it is something that can help some patients connect and/or reconnect with friends and loved ones.

While we are communicating that message, fasten that cape & tiara!

It's going to look fabulous on you! Remember, we ROCK!

Before I go, I have song that is special to me that I find inspiring as writer, patient, and simply, as a person. I hope you enjoy it and find some truth nuggets within! It is called... The Cape & its by legendary Texas singer/songwriter Guy Clark. Thought it was a bit apropos given our whole theme here and a perfect way to close this two part series. --The Healing Redhead

Guy Clark singing "The Cape" live with Verlon Thompson in 2010


  1. You do ROCK, and you're amazing! I truly love your blog, Les. It helps me better understand what you're going through and despite the pain, you ALWAYS find the silver lining. Love you, friend!

  2. So sorry about the unforgiving pain you are going through, Leslie. But I love your spirit and your virtual midnight blue cape. I bet your tiara is a sparkling, dazzling wonder. We may not be able to do a lot, but we can still choose to make the most of what we have & yes, we can still dream. Look out NZ & Austria - here comes Leslie! :-) @andreager

  3. Thank you BOTH for your LOVELY messages of support! You don't know how much they mean to me! I am very appreciative, Soo Lee & Andrea!

  4. For whatever reason, I didn't see this before. I'm so sorry you hurt SO MUCH. I wish I could just whisk you away and bring only beauty into your life. I feel helpless as an observer -- almost a voyeur -- watching this illness attack my friend unmercifully. It's not fair. But as a Phoenix rising from the ashes, your beauty and voice come to light as you put words on this screen. I miss you much, and wish I could make it all better. Hope your week goes smoothly!

  5. Thank you, Joni! This means SO MUCH to me!