Friday, January 27, 2012

YouTube provides patients, families with NF resources

You've heard of The Cat Lady, the 100s of laughing babies made famous on YouTube, the countless furry friends doing tricks with a flying frisbee, piano, or even a plastic pool. What YOU may not know is that YouTube has its share of videos on Neurofibromatosis. Yes, NF! Some include patient stories while others detail physician descriptions on what we, as patients, have to look forward to in the future in terms of medical trials, latest science, etc. Of course, there are more graphic videos of actual fleshy tumors and even surgeries, but I didn't focus on that. There is enough information on NF -- even Schwannomatosis! -- that it can be a resource for patients and families to go to for information, for hope.

You can start out by typing in: Neurofibromatosis, Schwannomatosis, and then Children's Tumor Foundation. To give you an idea of what is available, I will feature -- from time to time -- a video I find on YouTube. Last night, I found one that tells a story of a husband and wife. The wife, Jill, calls Schwannomatosis the "intruder" that enters their lives and never leaves. It is a poignant and passionate talk told from the caregiver's prospective. When I saw it I knew I wanted to share it with you all. Warning: You may need a tissue or... two.

This talk allowed me to know there is someone else out there dealing with the same beast I am
-- every day. Because Schwannomatosis is so rare it is easy to feel alone at times. This talk
allowed me to see that others face the same obstacles I do (although I wish they didn't). The talk was honest, heart-felt, real. Take a look.

Here is the video.

It is such a powerful message. One that more patients & families need to hear.

You can access YouTube here.

Type in key words in the search box located at the upper right-hand side of the screen. Don't hesitate to make your own video & share your NF story with the world! Create more awareness!

The Children's Tumor Foundation Web site

©The Healing Redhead

Monday, January 23, 2012

Laugh Track: Pain Scale Gets New Look & Gets Laughs [you gotta see!]

I found this on Pinterest recently and truly LOLed -- laughed out loud! It is a funny revision of the pain scale we are so used to seeing at hospitals. Thank you, Zazzle.

Source: via Leslie on Pinterest

 ©The Healing Redhead

Does Brian or Betty Feel More Pain? -- A Battle of the Sexes

I ran across the article below today & had to share! Do women really experience more pain than men? Well, we do give childbirth and get PMS every month for *how* many years? I hate to say it, though, women seem to be more proactive as a whole when it comes to health. But, we can ALL do better getting each other to the doctor, when needed. We can hold each other's hands through the pain! The point isn't who feels more pain but what are you going to do about it! The best answer: Be Proactive. Don't Wait... When it comes to your health. Now you will wait when you get there, but that's a small price to pay (bring a healthy snack & a water) between something caught early and being too late.

Do you think women and men feel pain differently?

Do you feel it is a question worth asking? Why or Why not?

Article: Do Women Feel More Pain Than Men?

©The Healing Redhead

Friday, January 20, 2012

Senior Year I Was Donning a Different Gown

It was 1995, I was attending Lewiston High School, in Lewiston Idaho, and was a proud Bengal, the mighty tiger. I painted the senior parking lot, decorated halls for Homecoming, held strong as I perched on the rocky hillside refurbishing the "L," THE senior class project, the "L" that represented our town, our year, us. From the small community of 50,000, you could see the bright-white "L" (actually formed using rocks) and the highway that brought people into the valley and sent them away. For many of my classmates, this town was their North Star and always would be. Yet for others, behind the "L" meant road signs and roadblocks leading to destinations and dreams, much, much bigger than the valley we called home.

It's that feeling of striking out on your own and I always wanted to go to the University of Montana and study journalism. My high school mentor "Mrs. A" told me to never sacrifice my dreams if I wanted something big from life. Even then, as I worked on the school newspaper, I had warning signs life would not be easy. Many Wednesday nights, when the newspaper "went to bed" and we stayed well past the last school bell and well into the night, I had to take Tylenol in excess of the dosage because the nerve pain in my legs was so severe. I said little of my pain and was discreet when taking my pills from my backpack.

On other evenings, my peers filled out application packets to out-of-state schools and
Catholic colleges in Washington and Montana while I spent my nights bent over my desk chair
stretching this way and that hoping, just hoping, the pain in back of my legs -- the nerve pain -- would stop just long enough so I could get some sleep. If I was lucky enough to get a few hours of sleep, I might be startled awake by an electric shock of pain, the nerve sending
me a nasty message. It seemed nerves only spoke (and continue to speak to this day) in harsh tones, dirty, mean.

The body seems so innocent, like the sky, my appendages the clouds, lilly white from little
sun, then lightning comes, the nerves zig-zaging through the sky. Then what do I hear? Thunder. Rain. Anxiety. Tears. More lightning. More tears. Until the storm passes...

The first time I went into one of the machines my teeth hurt afterward from holding my jaws so
tight. I'm not gonna lie, it felt like I was lying in a casket, a weird scientific contraption where physicians can study you after you're dead. After too many nights floundering on the exercise bike at 2 a.m., (my Dad thought the bike routine helped the pain) I didn't care what kind of contraption I had to lay on or in if it led to an answer or two. My parents sent me to a local neurosurgeon, Dr. Hill, but first I needed a MRI:  Ping. Ping-g-g-g-g-g-g.  PING!!!!
P-P-P-P-I-N-N-N-G-G-G!!! PING! PING! PING! P-pppp-iiiiiii-ng!!!! P-ppppppppppp-iiiiiiiiiiiiiIIIIIIIIII-NNNN-GGGG!!! PING. PING. It was loud. Extremely loud. OK, that's an understatement.*

*The noise level of a MRI can reach 120 dB(A) -- equal to a jet engine take off!

THRRIIP. I tried to say a Hail Mary like my Dad told me to but the construction sound of the
MRI made it nearly impossible: "Hail Mary, full of" THOMP! THOMP! "the Lord is with thee; Blessed art..." THOMP.THOMP.THOMP. omp. omp. omp. omp. THOMP!!!THOMP!!!

Even with my little knowledge of construction tools, I was having a better shot at imagining
the machinery of the work crew on a New York City street corner than the prayer of The Blessed Virgin. "Bam.Bam.BamBamBamBamB-b-b-b-bam! BAM BAM,BAM,BAM,BAM, BAM, BAM, BAM, BAM!!!  Thrip! Thrip! Thrip! Thrip! Thrip!   ip ip ip ip ip ip ip ip ip ip ip ip ip ippy-ippy-ippy-ippy
THRIP!!! bam bam

After tons and tons of construction noise or whatever it was (?!?!) inside a plastic tomb, my
first MRI was complete. And to that, I remember erupting, "Amen."

To be honest, MRIs are more a time inconvenience, if anything, now. I have actually gotten used to the coffin-like quarters. Ok, maybe "gotten used to" is a bit strong, but I can handle it when needed. I am not quite like a former co-worker who gloated, "Take a nap in there like I do." Kudos to him, but I don't think I will ever be that chill in the circular tube. I still have an occasional mini-freakout when I open my eyes inside (gasp!) and there's barely a
whisper between me and the top. I like to kid myself, if I really try, and bet that I can stick my tongue out far enough to reach the top. The technicians wouldn't be too keen on that plus I like to stay on their good side. They often poke me with a huge needle (the contrast, they call it) before my scheduled visit is all over. Plus, I would hate to get my tongue caught in that blasted thing for any reason. I don't trust it. Not one ounce.

I have have had some MRIs last less less than an half-hour and my recent record was 2 hours 20 minutes, if I remember right. Somewhere around there. The technician(s) even put music headphones on now but I can barely hear the Mozart or Kenny Chesney over the chainsaw, jack hammer or zup-zup-zup sounds it makes. I try to stay in my head as much as possible and relay
funny stories, light memories from the past, favorite places, favorite books, etc. I don't clench my jaw anymore. I do get a bit anxious after the two-hour mark, though, but who can blame a girl... I've gotta Twitter & Pinterest to check!

I am thankful MRIs have become easier for me over the years and that I am not as claustrophobic as I previously thought. That would make for miserable moments and as often as
I go... I should get a freebie or two by now! Ha ha! Yes, MRIs are never on anyones Bucket List but I've come to tolerate 'em if I come in the right frame of mind. My main issue is the dreaded needle! As many times as I've been poked, I still can't look and there's a chance I may even get dizzy on a nurse. Practicing students, beware. My arm is not a pincushion. Stop after three tries, please! As for the MRI, I have never liked the feeling of the contrast
going through my bloodstream. For a few moments, it makes you feel as though you are the
villain in one of the famous fairytales or action flicks and this is what they finally Do to DO YOU IN! Yeah, it's a trip. Try it sometime. The warmth as it moves through your body:
wrists, face, stomach... Behind the eyeballs is past your garden-grade Halloween trick. Martha Stewart's best couldn't pull off anything that scary or crafty. Or could they? Seriously, feels deadly. The casket, umm, MRI,  moves again, one last time. Coincidence? Hmmm... They call it "Your last round." Will you make it out? Then the creepy sounds start again. DEEP.
EEP. eep. eep. eep. Eep. DEEP. GREEP. GRREEP. EEEEEP!!!! EEEP! Ca-link. Ca-link. Ca-link. CA-LINK! CA-LINK! CALINK!!! Eeeeppp!!!! ... On into the night...

All I can say is Eek! So far, I have made it out safe-and-sound each and every time. According
to one medical blog I visited, around 20% of MRIs are ordered with contrast. ( The contrast, for those of y'all that don't know, is used to better enhance the visibility of what is being scanned. Some people can have mild to severe reactions to the
IV contrast. I've been lucky, though. I just make sure to get up extra slow from the exam table when I exit the MRI room. Never had a problem, except for the creepy feeling.
#behindtheeyeballs No real side-effects. Thank goodness.  

So, it was 1995. Boyz II Men earned their top hit of the year and Seinfeld's "No Soup For You"
is the hit phrase. I graduated from high school, experience one of the longest weekend of my life (and it doesn't involve a guy!) awaiting a hospital call (how fun!) to hear the results
of a biopsy. The boys (boys in general or Boyz II Men) didn't rate real high at that point right then when you got cancer on the brain!

Finally, I got my answer from the hospital: no cancer! Hooray! I had surgery to remove the tumor in my pelvis the summer following high school. So began what is now 20-plus surgeries
and counting. And it also began my own lessons in how Neurofibromatosis has shaped my life.  And I could not count how many MRIs I have had since that very first one with the start of the Hail Mary. Who knows? It's probably better not to know because it's not like I am going for
the Guinness Book or something!  Ha ha!

 I decided to attend college in the same town I went to high school in, in fact the institutions mere blocks from each other. Mom and Dad even bought a house in the area so getting back and forth would be a cinch. And guys did come back into the picture -- but more on that later in posts to come! *wink

It's never an appointment I'm thrilled about, I'll admit, and not somewhere you want to bring a date, especially if they have metal in their shoes (unless you want them stuck on you for real!)! And so not a chic way to spend a Friday evening, though I've done it & I will do it again (most likely -- thanks to crazy schedulers!) & I'll tell you why. I am very thankful for the technology. If I stay on top of it, and do what I am supposed to do, the MRIs, among a host of other things I will be talking about on this blog, are why I'm still here. Here, as in living. It's worth the noise. Bring it on. I just can't forget ear plugs. Plenty of ear plugs.

And I do get to leave my bra at home. Sounds scandalous enough. I like it!  I'll leave it at that.

Just the Facts, Ma'am:

--> In the 1950s, Herman Carr reported on the creation of a one-dimensional MR image.

--> Construction of MRI suites can cost up to $500,000-plus depending on project scope.

 ©The Healing Redhead

Monday, January 9, 2012

The Laugh Track: The Waiting Room

My aunt Jamie reminded me of this old Seinfeld segment and it fit all too well as we waited & waited & waited for my pain management doctor in Houston to walk through the door. He is usually the "good" doctor when it comes to time management. We were already in "the little room" when we had The Wait before us and yet another in the pharmacy. Another gripe I have of Seinfeld-ian proportions is after they call your name in the big room & the nurse, on the way to the "little room," asks how you're doing... I always say "All Right." "OK." "Fine." But if I was OK & Fine, I wouldn't need to be there, now would I? *wink*  ©The Healing Redhead 

What a Pain! Does The Pain Scale Hurt or Help Us as Patients?

You know it. You've seen it. Pregnant ladies know it all too well. "Spoonies," too. People who have surgery definitely know it.

Smiley Face. SomewhatofaSmileyFace. Uh-Oh. #%+^&!!!

Dealing with pain is a tricky, tricky subject. It's tricky for the patient (each of us), the doctors, nurses, and other medical personnel caring for us, and our primary caregivers at home. Plus, we cannot forget friends, family, church friends, hobby group pals, etc.

Ask anyone on the street, rate your pain from 1 to 10 and by his or her response to that simple question, you will know a lot. Since my foray into the medical establishment at age 18 when I had my first MRI, cancer scare and subsequent surgery, I didn't think much of the 8 x 10 folded-over piece of paper tacked to the wall with scotch tape, threatening to fall with every swivel of a fan or rush of an air conditioner vent. Next to 0-1 is a smiley face and I imagine tickets to The Gorge, an outside concert venue a few hours west of Lewiston, Idaho,
where I was living at the time. The venue is ironically in George, Wash. (a giggle in itself). Current & iconic bands, single acts frequent the stage, a stage that merely rests on the
rolling Columbia Gorge steppe like somewhat an anomaly. Even though I always enjoyed going and may go again someday, I always kind of thought it weird to have such a wild and cosmic force out in the middle out of nowhere with the decibles pulsing along the river's tributaries, getting louder and louder, never settling down, unsettling the natural balance. The empty beer
can on what used to be animal tracks. Songs play & people party & have a grand time, me included, in a one of the most beautiful settings a concert could take place. But that's
before pain took me away.(More on that in posts to come...)

Chronic pain patients know what never settling down means in terms of pain. It can be never-ending, around the clock or sporadic, sharp, bursts of pain in certain areas (zap!) (pow!)
(zap!) (ZAP!)! It can mean interruptions in sleep or not sleeping at all.  With what I have, Neurofibromatosis, tumors rest on nerve endings throughout the body sometimes causing no pain, mild pain, all the way to severe, debilitating pain. Unfortunately, I know the latter from experience.

Back to the handy pain chart,

*1-2 is mild pain;
*3-4 is moderate pain;
*5-6 is severe pain;
*7-8 is very severe pain; and
*9-10 worst pain you ever experienced


There's some challenges patients, medical staff, and caregivers face day-to-day with this
chart as patients describe pain. One person's severe pain may be another's ice cream cone with sprinkles. OK, that is a little extreme, but it is hard to help each other when there are so
many kinds of people and so many pain thresholds. Then you have to deal with personality
issues (we will see this later) and whether someone tells the truth or not. Some truly need
medicine while others are looking to scam the system. Luckily, doctors and nurses don't just
use the pain scale like some parents do with a "sick" kid before a school day begins. Smart
parents and smart doctors back it up with diagnotics. :)

The pain chart can be a handy tool but I even find it hard at times when constantly asked "how
do you rate your pain?" A "four" two-years ago might not be a four today. Unless I am at 5-6 and going up fast, the numbers aren't terribly important to me. But then I get to 8, pain surges, and getting help becomes central to my life and overall well-being because it affects my depression heavily if I spend too much time on the higher end of the scale. But you have to remember my condition,from the outside, is unnotticeable. Unless I speak up, "7!" or "I'mreally hurting," people forget or move on to other patients. So, as a starting point and
conversation starter, the pain scale can be a good thing. But doctors and caregivers have to know how patients use the system because like each case each patient reacts to pain

There are times I keep my pain under wraps, i.e. public places or with friends, and my face
doesn't mirror what's happening on the inside, i.e. upset, hurting, etc. But I am truly feeling that inside. Yet, other times, I am totally that face and then some on the outside,
i.e. 5 p.m. at MD Anderson after a full day of tests and appointments. Or even gals, my time of the month is more of a challenge pain-wise, too. All right, I guess you say I'm aiming to
be the new poster gal for the pain chart. How's that for a claim to fame? :) Can you relate to
any of this? Has the pain chart helped you talk to your doctor and get your point across or has it been more of a hinderance, a game of pick-a-number?

A home health professional visited the house two to three days a week from June to November of
last year due to a post-op wound that was not healing correctly. It's a very long, detailed story with gruesome photographs, cleaning liquids, gauze, a buzzing machine AKA apparatus (officially called wound vac) that I had to wear for numerous weeks to help heal the post-op
error. Yes, I said, error, Mr. Surgeon. Long story short: I should've never taken said machine to the afternoon matinee. (I thought it would behave!) It became the worst kind of BFF making all kind of noise and ended up being ushered out of the theatre during a SJP* movie, even. Grr... It wasn't her career best, but I do like to see juicy parts of the movie & I swear that little machine had a brain! It was driving me crazy that day. I don't like cliches but I have to say it was a pain in the rear! Funny thing is, the wound vac was stage-left of that, my rear. So, it really was a pain in the backside! And that pain: Def: 5+! As you can see, humor gets me through!

We should laugh as much as we can when we are feeling good. Even at doctor's offices I use
bits of humor to diffuse situations. And there are times, I will admit, I can get a bit too serious when I'm in pain. My mom will agree. Well, to me, it's serious business. That's when I
gotta focus -- pray and/or mediate, if I can. Focus on an image or two that makes me happy like a scene in nature or my two furry "kids," Bridger and Sierra. That can sometimes make the
numbers on that pain scale go down or help me stay sane until something changes. But sometimes it is much, much harder. I'm not gonna lie. Living with a genetic disorder like
Neurofibromatosis*, is sometimes living minute to minute. The pain is really up there and even with help from doctors, nurses, family, friends, the person who helps you out is YOU! You are
strong enough. I am STRONG enough! It's not easy, though. Right now. As I type this, I am at a
4 and it's rising (pain in my arm, rising up through my neck on the left side -- Burning, aching, deep down). And as I do a quick edit, I am recovering from a three-day "I'm Out of It" zone with achiness, dizziness, pain, the whole works. I was completely unable to do anything.

When it comes... Fighting pain is about getting at that part of you that is deep down and
accessing it. Reach it and know it is there, be able to get at it. There
are times when you can't get at it and that is not only lonely but you hurt more. Also, you have to be able to feel the pain, all of it, imagine you are grabbing it all up, pulling it
from your body, visualize this... Grab that pain and hold it there away FROM your body as a symbol. Yes, this may seem silly, maybe, but it can work. One more item here, if you have
dealt with a lot with pain as I have, close your eyes: make sure there is a place inside you, somewhere, that pain has not got. Breathe in and out and hold yourself in that spot. Go there
to that spot as much as
you can. It can be a sanctuary from the pain. De-pain. Non-pain. Go there & be. It's important. Don't let pain get all of you. It may physically. But not our soul & our spirit.
So, the home health guy came to the house one day during that mini-month marathon and we got to discussing the pain chart. Every day, he asked me how I felt on a 1-10 scale. In a previous job as an ER nurse, he told me, he had a young patient on a gurney to which he asked the very same question. If I remember correctly, the guy may have been in his late teens. I don't remember exactly, forgive me. After not responding, the nurse, my home health guy, said, "0 means no pain at all & 10 is the worst pain you've ever experienced in your life...." The
patient sat up a little straighter and with a sly grin said, "Man, I ain't had the worst pain
in my life yet, bro'." I smiled. That was good one. I had to admit. Smart remark, yes. A heck of one. Then, I thought a bit more seriously, "God, I hope I am past that." That terrible, terrible pain. Yet, that pain still comes... In shocks & lightning bursts as if my body is more machine than flesh. I just hope I have the resources within me and around me to get me through it.

At age 34, I have sufficiently felt my share of 10s and even 10+ in my day from a needle
biopsy that went astray (age 18) to nerve pain in my leg that I simply could not keep under control (age 33) It's a horrible feeling, no, it's beyond horrible, to be in such agony and
not know when it will stop. Even as a writer, I find it tough to explain how I feel when I am in those moments of sheer pain and dread hoping, wishing, praying for the pain to ease up, to
stop. I want to scream out loud but I don't want to scare the people around me. But I want to urge God, the weather vain (dang pressure in the air all the time!), someone, something to
work on my & behalf. PLEASE. I try and stay as still as possible until it passes in the most comfortable position. Loud noises, for some reason, usually agitate the situation. This simply
could be a personal thing and the television's penchant for unruly commercials! I don't usually want to talk to anyone until the pain is back in the 6-7at least, but it depends on
each situation. Some 6-7 are tolerable. But then some aren't. I don't become "me" until I'm back at 4-5. Let's just say. For the record. Of course, I am always aiming for the round
smiley face at the left end with the 1/zero! Sounds pretty bad for a life's ambition but after you've been through the PET scans, the delicious barium shakes (sarcasm); long, longer,
longest waiting in the waiting room until the night cleaning crew shows up; funky cafeteria food and your mom's odd attraction to it; and mere affection for all hospital gift shops big
and small--as long as they have books&magaines, that smiley face means everything to you. It's your goal. Like tickets to your favorite concert venue. You want the :). It nearly becomes
like a badge once you cleared the rough passageway. Your finally home! :)

Do you have a lasting memory (good/bad) related to a pain scale?

Do you find pain scales helpful as a chronic pain patient?

*Unless you count the unidentifiable item Mom retrieved from the cafe that was wrapped in

*Sarah Jessica Parker, the one and only!

*I thought I had NF1 for the longest from age 18-34 and this year, at age 34, I got a blood
test that confirmed I had another form of NF, the newest variation called Schwannomatosis. I'll be talking more about it on my blog in the future. Info can be found;

 ©The Healing Redhead