Monday, September 24, 2012

'Lookout, The Healing Redhead is on the scene...'

Last week, I talked the ZAP, STING and BAM of invisible illness... Part I! Well, Part II is well on its way & coming soon! In the meantime, I found these colorful designer mittens that went along with my theme: "Let's Put on Our Superhero Gear!" How fun, right?
Kate Spade

If you are like me, you will be just looking from afar and not actually get to wear the fab n' fashionable hand warmers! Another reason chronic illness sucks... it sucks the funds right from ya! Money for bills and money for fun (like a massage, a night out, a book or two, a new outfit, cute mittens) Well, it's slim pickings these days... Frugal times, frugal measures. Over time, I will discuss how I manage  resources, make the most of what  I have and still manage to stay semi-sane & have a lil' fun here and there. If the present is not too pleasant I always like to remember, it's not forever. It might last a long, long time BUT not forever. Supposed to be kinda funny but I know some of us have been putting up with pain and side-effects for much too long and can't laugh anymore. Sometimes it is hard to believe on those dark days. I understand.  
I do believe there is an ebb and flow -- like our very own bodies, Mondays through Fridays and the energy of a puppy like my Oliver running and diving for toys then lightly snoring on my legs at night, dreaming of doing it all over again. 
So, I do a lot of puppy sitting and some window screen shopping (not buying, just looking), and collecting items on Pinterest that delight me. It's all for fun... the window shopping & pinning gives me ideas for the future when times might be brighter -- more money in my bank account and less pain in my body. I can hope and pray... Maybe I can buy myself that second Kate Spade purse and those mittens that say POW! Then I'll knock out invisible illness once and for all! K-BOOM! That's right! Lookout, The Healing Redhead is on the scene ready to rumble... with Chronic I! 

To Be Continued... 

 ©The Healing Redhead

Saturday, September 15, 2012

Let's Put on Our Superhero Gear!

SPECIAL FEATURE for Invisible Chronic Illness Awareness

Last week was Invisible Chronic Illness Awareness Week! Below is part one of a two-part article on the *zap* of chronic pain and how we, as patients, continually *POW* give it all we got! To a patient with invisible illness the symptoms and realities are very VISIBLE to us. Ironically, I would have posted this last week but I dealt with my own set of chronic issues... I kept going though and I give you this two-part special. After all, awareness might last a week but we live with our conditions 24 hours a day, 7 days a week, 365 days a year. No holidays. In fact, I did miss celebrating Christmas last year with my extended family because of my nerve pain due to my Neurofibromatosis type III or what is called Schwannomatosis ( So, it is a very true fact this kind of illness makes for many sacrifices, challenges, prayers and silent moments, and for me, a chance to tell it like it is. That's why I have The Healing Redhead Web site, to give co-chronic healers a hand and give those around us a glimpse in, if just for a second, and to focus on a life that is very real and so often misunderstood. It can even be a teeth-grinder at times, as you will soon see... in Part II.

Thanks for stopping by!

Part I

Zap! Sting!

It might happen one day.
It might happen over a period of time.
It may happen again and again and again and you don't have a specific name for it.

It's a sneaky one that invisible Illness! It can make its way in and out of your life and back again as quick as that guy you dated who loves commitment so much (read sarcasm). Over time, little by little, the signs start to reveal themselves. A fall. A mysterious pang here, no it's there. Then, a surgery goes awry. Then another. Pain itself starts to escalate as does your anxiety. Before you know it, months pass or maybe a year or more... you've been left without a career, hobbies, and even the home you own has a for-sale sign and you live with family now.

Symptoms related to invisible illnesses are often complicated so much so even David Blaine and David Copperfield can't make these illnesses visible with their powers. The patient's symptoms lay hidden under the surface and hidden from those around them -- family & friends to doctors & dates who can't tell a single thing is going on unless that person speaks up, winces or complains. See, the symptoms manifest largely on the inside, hidden from view, and the person suffers in mostly silence, especially during a flare-up or spike on the pain scale. Invisible doesn't mean out of the way and taken care of; if anything this person is more vigilant. They are at the doctor more, the MRI scanning bed, and off to get blood tests. It is sort of like flipping the inside out and seeing what the story is telling us. The worst thing anyone can do is ignore symptoms and refuse to go to the doctor. To me, that's putting one foot in the grave. I have a family story to back me
up. But that's later. An another story entirely.

Speaking of family... brothers, sisters, parents, and extended family sometimes don't believe us and what we go through on a daily basis. Friends, too, may not understand and may even leave our side. Others may try to "fix" us and when that doesn't work they too will find other "cases." If this is something you deal with, I have a great book titled, "Why Can't I Make People Understand" by Lisa J. Copen. She says it to the reader straight, not a lot of fluff. But that doesn't mean Lisa isn't compassionate. She is one of our best resources as patients of chronic illness and as warriors of invisible illness. This book really helped me and I go back to it from time to time when someone might say a thing not too friendly or just not thinking. This author helps us step back and put things in perspective. I like her because she's an insider who knows what this journey is like so she's not writing about stuff she hasn't lived or seen. It's is as authentic as it gets.

It's the pain, struggle, and symptoms all encased in the human body for no one to see. It's waking up each morning and knowing getting out of the bed and to the bathroom will be the first of several, if not many, challenges of the day. The shower has become less of a relaxing, comforting getaway and more of an overwhelming hygiene routine that wears me and my patience out (you too?)! But at least this patient is clean and smells nice! In most cases, I don't speed right through and dry my hair like during my previous life. It's hard for me too because hanging out with wet hair is one of my biggest pet peeves but right now I have to slow my pace and deal with it. I'm pretty out of it energy-wise after my shower so I may just try to comb out part of my hair or pull it back in a clip until I regain some energy to continue. I don't know about everyone else out there in ChronicLand but I am still amazed (after a few years) by how a semi-warm shower can leave me zonked, so tired, out of energy. If you feel the same way, talk to me.

POW!-erful option
Combing, drying, and styling are for the experts! I see the celebs & reality "stars" go get their hair and makeup done and think, nope! They should do their own makeup & their own hair and

give their beauty and fashion pros to the cancer hospitals and housebound patients with invisible illnesses! Great idea, huh? At least there should be a program like that! I think a great name is: Dr. Glamour or The Dr. Glam Squad! *Tell me what you think of the Dr. Glam idea in the comments section!

It disappears then reappears like that rabbit in a hat or the coins behind your uncle's ear. The pain gets trickier, more surprising every time. The symptoms always seem more intense, more complex, a grand puzzle with constant moving pieces. Some physicians are part of that working puzzle while others are less willing to help The Chronic Pain Patient and turn them away. I want to see chronic pain centers become more integrative and not just rely on pain pills and surgeries as answers. These centers and the doctors who serve this particular population, in general, need to be more holistic in their service toward patients -- no matter if it's MS, Neurofibromatosis, or Crohn's Disease. I've been enlightened on this subject by reading "The Chronic Pain Solution: Your Personal Path to Pain Relief" by Dr. James Dillard. It was a fascinating read and one that gives real solutions to patients, solutions that make sense and provide inspiration. Dillard covers a large gamut of topics, including activites, diet, and how readers can develop their own pain control plan. I highly recommend it.

Stay tuned for Part II coming soon...

**I was not paid to recommend the books featured in the blog post.

 ©The Healing Redhead

Sunday, September 2, 2012

Take a Byte... Umm... Bite of This Cute Cupcake

Been checking out various cupcake recipes on Betty Crocker online today and found this cutie for back-to-school! Celebrate a job well done in the classroom (teacher and/or students) with mini versions or this size:

A+ Betty Crocker -- The Web site offers a fun feature where you can fill in up to three items from the pantry and *PrEsTO* it will build a recipe! How cool, right? I thought so. And if you love coupons, you will LOVE Miss Betty!

As for my cool-for-school selection is that the cutest laptop or what? Bet it is delicious too! I'd definitely take a byte... ummm... bite of that computer! I just love that it is an apple cupcake -- perfect for September-October... Let the fall baking begin! Yay! I started my own festivities this weekend with a 12 oz. pumpkin latte from Starbucks. I even got inspired to create a pie board on Pinterest. I will post a link when it's ready. FACT: Do you know that I have never made a pie in my entire life? That just will not do anymore. I want to start making PIES, dang it! It's a bucket list entry -- it's that important! I really don't want my pain from Neurofibromatosis to get in the way. If my pain can stay within reasonable limits and my energy can hold on here and there for some solid afternoons, we might just be in business, as they say. See building endurance and keeping my energy up (without 12 naps a day) is my current challenge. I would love to be able to bake a pie or two, a batch of cupcakes, and yummy pumpkin bread (a family favorite). We will see. I'm excited about the possibilities, though. I want my body to cooperate SO BAD yet like so many in similar circumstances know it can be disappointing season to season, putting up with constant aggravation, sadness, and missed opportunities. It is nursing those quelched hopes -- big and small -- that finally bring the tears. It is something hard to admit but it is true.

With chronic pain, much of it is out of our control. We do what we can and the rest we have to
deal with day to day and sometimes minute to minute, watching that timer like a nervous, first-time baker...waiting for that delicious cookie to rise.

Nerve pain is the the hallmark of Schwannomatosis or what I call NF 3. Don't tell any doctors or researchers. Heck, do! Why didn't they just call it that? Anyone know? Anyway, nerve pain, especially this brand, listens to no one. I mean NO ONE! It is the ultimate devil, the robber of life, the arch-enemy. I think you get the picture. Just ask anyone who has it. It is as haunting, even more so, than anything you find on Oct. 31. Let me make myself clear: the pain is scary, the people with the condition, like myself, ARE NOT! The adjectives that describe nerve pain are telling: stinging; jolting; radiating; numbing; burning; zapping; and more... The list could fill a large billboard. But I'd rather see a billboard photo of cute cupcakes (like above) or an ad for Dancing With the Stars' hottie Maks! Oh, don't act like you don't know WHO I speak of! Mr. Chmerkovskiy! (Brief side note: Good thing the contestants of Bachelor Pad did not get his last name at the Spelling Bee last week! Who knows how long that bee would have lasted! Those poor child judges.

As a person dealing with chronic pain issues 24/7, (my unscripted reality show) I have good days and not-so-good days and bad days. Fingers crossed with an upcoming medicine adjustment, I might be able to do more and actually sleep less. With that hope, I am making a list of Fall Fun Activities/Goals. You can do the same. Steal a few of mine, add a few of yours... Include them
below in the comments section! I love hearing from people! So when you have a good
day you can access the list and pick an item. Why not, right? If you have a significant other, children, extended family, etc., your list may look a lot different. Just remember to include 1-2 items for JUST YOURSELF. Like a massage. Too much $$? A lot of places run deals, so
don't automatically put the kibosh on pampering! Phone apps & newspaper & radio ads are
great places to start looking for % off.

My body is Ahhh-ing already just thinking about a SPA day.

With a new pain doctor working on my case and a hopeful spirit, I hope YOU & I, my reader, can enjoy autumn out and about... even if it's just a little bit. It is, after all, my favorite time of year!

A Few of My Autumnal Options
*Visit a pumpkin patch
*Make a pie from scratch
*Make seasonal cupcakes
*Visit craft store for inspiration
*Order festive dog collars for my fur babies
*Spend morning or afternoon at coffeeshop reading or writing at leisure
*Read political cartoons to offset the blistering candidate commercials
*Take autumn walk on cool, brisk day
*Enjoy tossing frisbee with puppy, Oliver
*Get a massage
*Enjoy a pedicure so my toes have autumn flair
*Go to local library & read magazines
*Make meeting of local writers group
*Visit church during off-hours to pray, listen
*Stretch right hand to strengthen mobility
*Try to journal with pen at times instead of with just computer (My left hand is at bit more difficult to write with given it is not my dominant hand. Journal with both and be
*Last, but NOT least, make dog treats for "the kids."

***READERS, DON'T HOLD OUT ON ME! What are some of your favorite autumn treats? Don't forget: I would LOVE to hear your ideas and plans for fall.

 ©The Healing Redhead