Comments

Please note that the comment section is "no reply" which means I can't reach you unless you leave a way for me to do that. My email address is at the top if you wish to contact me. Also, please, no soliciting. Thank you.

Sunday, January 29, 2012

I AM NOT A DRUG ADDICT

    I wrote this 15 years ago and some things have changed but not much, and not for the good . Thank you for reading; comments are welcomed!        


                                 
I AM NOT A DRUG ADDICT.   It is remarkably easy to lose one’s health and wealth, while finding and qualifying for available safety nets is horrifically difficult,

I AM NOT A DRUG ADDICT.  I have a genetic disorder called neurofibromatosis.  I have inoperable tumors throughout my body and the ones around my entire spine are causing me pain that cannot be adequately described nor treated.  I live at a “6” on the 1 to 10 scale of pain.  I do not go for a 1 or a zero.  On bad days, which are many, I am at a 8 or higher.  Often, all I can do is lay flat.  I cannot sit more than 20 minutes without excruciating pain. 


I AM NOT A DRUG ADDICT.  The behaviors of drug addicts and those with untreated chronic pain are similar, according to an abstract on the aberrant behaviors of drug addicts as written by a physician (who doesn’t wish to be named).  This often leaves doctors, DEA administrators, pharmacists and lay people to think pain patients are addicts. 

Also, because many pain patients have no outward signs of illness such as canes and wheelchairs, chronic pain can best be described as an invisible disease (and it IS a disease, in and of itself) causing more confusion for family, friends, co-workers and the world at large.  We become good at “faking it” for friends and family members, because if we complain or get angry we are labeled difficult.  Anger mimics pain as well.  People see the scrunched-up faces, the knitted brows, down turned mouths and think we are angry when all we are is in pain.

 AM NOT A DRUG ADDICT.  The Department of Justice (DOJ), in particular the Drug Enforcement Agency (DEA) has the full weight of the Bush administration on its side (and as far as I know, this administration too) and has been given carte blanche access to doctors and their patients.  The 1974 Privacy Act which was amended in 2002, ensures that access.  In addition, prescription-monitoring systems trample on the civil rights of patients and doctors and must be opposed and stopped until the ambiguity in the language is clarified because as it stands, anyone, including employers, can access our most private information.  The national drug strategy focuses on prescription drug abuse by pushing prescription registries and physician prosecutions.   More than half the states (maybe more by now) have thus far adopted these measures with the help of a $300,000 Federal Grant for start up.   The 2005 Anti Drug Budget is also included.  Catching criminals cannot be at the expense of personal privacy.  There needs to be checks and balances and they simply do not exist.  And the government is busy reclassifying certain pain medications, further limiting access.

I AM NOT A DRUG ADDICT.  The DEA, often using SWAT- type tactics and has been known to burst through the doors of pain clinics without warrants or cause, confiscating patient files, computers, and other private data belonging to the clinic, terrorizing patients, arresting doctors and even, it has been reported, conducting body searches of employees.  Pharmacists are equally at risk, often times making the decision to discontinue carrying the narcotics needed by pain patients or insisting on cash only making it difficult for patients on disability or limited incomes due to illness to access needed medication.  For pain patients, it’s called medication.

I AM NOT A DRUG ADDICT.  Few pain patients become addicted because we must slowly increase our dosage over time, called titrating.  Addicts crush and either inhale or inject the drug.   The actual number of true pain patients becoming addicted is 1-3%.  The reason higher numbers are quoted is because the statisticians include those who are already addicted, or those with addictive personalities.  For addicts, it is called drugs.



I AM NOT A DRUG ADDICT.  We must educate and enlighten people by exposing this misuse of administrative power, explaining its effect on chronic pain patients.   The DOJ, whose agents do not possess medical degrees, is setting limits on the appropriate amount of narcotics needed to treat pain instead of letting doctors decide.   The tragic outcome is that patients needing medical attention often have no options.   The suicide rate for those in untreated chronic pain is NINE times higher than that of the general population. 

I AM NOT A DRUG ADDICT.  Good doctors are having their names maligned, are at risk of losing their malpractice insurance, their licenses, their finances, their freedom and on rare occasions, their lives.   Some doctors chose suicide, after being harassed, arrested and tried.  Even when these trials end in acquittal, careers are left in shambles due to the doctor not being able to fight the government and it’s blank check.  And patients are left with no where to turn.  While some doctors misuse their privileges, the number being arrested and brought down on charges far exceeds reasonability, amounting to nothing less then a witch hunt. 

I AM NOT A DRUG ADDICTS.  The concern over addiction is unfounded, according to the American Medical Association and the New England Journal of Medicine, yet addiction is often cited as the reason for this crackdown.  I have documents of the DEA’s classifications of controlled substances as written by a physician (the government is busy reclassifying these medications), a clarification of the myths surrounding the use of narcotics for pain and it’s history, and several documents concerning the use of medical marijuana, including why some states have adopted its’ use while other states oppose it.  Pharmaceutical companies are blocking access to non-narcotic over-the-border options, and money is an enormous roadblock for the sick.  Pharmacies are refusing to fill certain orders, or demand cash when again, money is an issue for the sick.

I AM NOT A DRUG ADDICT.  What would happen if an insulin-dependent diabetic were denied their medication?  How about those with heart, thyroid or kidney disease?  At the moment, it’s the class of drug at issue, even though these medications do the same thing other medications do  — they treat a disease— one called chronic pain.  And used correctly, it works well.  True pain patients do not experience a high or sense of euphoria the way the addict does due to the very slow increases (called titrating) in the level of the medication.  Addicts crush and either inject or snort large doses of the drug.  There are many documents explaining the difference between addiction and dependency, written by physicians.  Withdrawal is not a sign of addiction.  Used incorrectly, virtually any drug or food is harmful and/or addictive.  And people withdrawal from non-narcotics.  Withdrawal is the safe, smart way to discontinue using a medication.

I AM NOT A DRUG ADDICT.  Pain patients want the same thing everyone wants — to lead normal lives, to contribute to life, to love and be loved, to grow and be happy.  Perhaps the most difficult thing about being in chronic pain is knowing the medication needed is available but being denied due to the War on Drugs and the DEA’s refusal to distinguish between patients and criminals.  And since no administration has come close to shutting down the cartels, the DOJ is going after the easy target: pain patients and the doctors who treat them.  Doctors, pharmacists and patients are all at risk.  Pain patients have the most to lose.

I AM NOT A DRUG ADDICT.  Our government is now operating out of fear, making patients and the doctors who treat them the enemy.  Our leaders are behaving like animals caught in a snare, chewing off their legs to survive.   And the legs in question is the constitution itself.  Little by little, our civil rights are being eroded out of this fear, making our government the enemy of its people, much like in the countries whose leaders we love to hate.  No difference, no kidding.

I AM NOT A DRUG ADDICT.  Stop treating me as such.  “When you have your health, you have everything” is more than a prayer murmered at Thanksgiving when one is ill.  It actually means something.  And anyone working with sick people must be a little bit more responsive to their needs than a cashier at a grocery store.  In a perfect world, everyone would be understanding.  But those who treat people in pain must find it in their hearts to understand better than others.



And BTW, I use "alternative" methods as well!





Friday, January 27, 2012

Comparing is Toxic

One doesn’t need to be sitting on a mountaintop see what’s around them as they contemplate life.   And this is especially true for those whose only distractions are doctor appointments, new symptoms to contend with, isolation, the loss of sensation throughout the body and a myriad of other health-related issues, including the management of the bills that come as regularly as the sunset.    I’ve written about it in other posts, calling it “To Be.”  I’m certainly far from the first to write about it and take no credit for it.  And this isn’t about bragging rights for I am completely remiss when it comes to relationships (romantic ones),  career, parenting….and the list goes on.  We all of our strengths and weaknesses, right?
One of the most difficult thing about this blog and I’m guessing, others like it (that deal with health issues) is that we must walk a fine line between telling the truth and not sounding like self-serving, pity-seeking cry babies who are looking for sympathy anywhere they can find it.  That isn’t my goal (although I have been all those things many times) and my guess is that the authors of these types of blogs have the same thing in mind as I do: education about our illness, the sharing of personal triumphs and challenges while keeping a sense of humor, grace and a wish to serve, even if it touches just one person. 
And one person is a lot; I don’t mean to make it sound unimportant.  It counts.  Big time.  And when I finally let go of wanting to “make a difference” to a mass of people; when I started writing this for myself and when I fully accepted that maybe no one would read it or that someone I love might misinterpret something and become offended,  that’s when I began to really come clean.  I must speak my truth to survive and would never write anything to purposely hurt someone else..  Listen: everyone complains about something but few of us put it in writing.  You can reveal your truth without revealing names.
Sometimes I read or hear about people with health issues far worse than my own.  Someone just told me yesterday that Stephen Hawking, that brilliant physicist who has ALS and can only communicate by touching his tongue to the inside of his cheek (literally, the only part of his body he can control) who writes papers and even can translate words on paper (by touching his tongue to his cheek) to a voice synthesizer that takes hours and hours to upload, has lost that ability.  I was moved to tears when I heard that.  And when I think of all his contributions and what it must be like to be in “locked in” mode  He can see and hear, but that’s about it.
This kind of news makes me fall apart inside.  This is what makes me want to beat myself up for not “trying harder” to do more.  This is when I forget that I don’t have the brain (the magnificent part) of Stephen Hawking even if I didn’t have all my challenges.  It doesn’t do any good for us to hold ourselves up to someone else, especially someone as advanced intellectually as Mr. Hawking.  All I can do is my best, and no one knows what that is but me.  And yet, the voice in my head beats me up almost daily, telling me I could, would, should, ought to….what’s that saying?  “Don’t should on yourself it causes hardening of the oughteries” 
But it’s hard not to in this, our results driven society, where if you are not a multi-millionaire by the time you’re 30 you feel like a failure. Healthy people feel the need to compare as well.  It’s a killer, that comparing.  I’ve written a lot about it. Here’s a little test you can do to prove my point.   I’ve done this test a bunch of times and it’s amazing that the results are always the same.
The next time you are feeling rotten about something (emotionally) sit yourself down close your eyes and ask yourself what you were thinking about when the rotten feelings emerged.   You will see that almost every time (with few exceptions, those being the death of someone you love, a friend going through something awful, etc.) you were thinking about something someone else has or has achieved, someone you love who just took a trip, a friend who just got a new something or other and you start thinking about all that you don’t have and If you are honest with yourself you will feel it in your body immediately.  That feeling of worthlessness, of being bad, not good enough, not trying hard enough, etc.  That “rotten” feeling that got you to sit down and do my little test in the first place.
The good news?  The second you stop comparing yourself to them (or anyone, including the likes of Stephen Hawking or Brad Pitt and Angelina Jolie) you feel it in your body immediately…there is a lift that will sustain itself if you let it.  Also, anti-depressants help (lol).  But seriously…stop comparing.  That’s a good lessons for everyone, not just sick people.  Because it’s false.  We are who we are and our lives, whether they are full of sun filled days with no worries whatsoever or filled with challenge after challenge, are ours to do with whatever we see fit, even with our restrictions.
Besides, if life is too easy we don’t learn or grow.  That’s what challenges are all about.  To have it too easy is really a kind of curse.  So turn off your television when the award shows come one (or just turn it off and read) and be thankful for your life exactly how it is and exactly how it isn’t.  And stop comparing.  Now. 

Tuesday, January 24, 2012

It Starts Here (Part 3, Last of this Series)

Okay, so where was I?  Oh yeah.  First MRI.  Scary stuff.  And noisy.  And they cost more than most people in the world earn in five years.  I’m not joking.  My first one, 22 years ago, was over $1,200 for the entire spine.  I thought that was outrageous.  Now, the entire spine over $18,000!  I mean, I know those machines are expensive, but they run them 24 hours a day at the  hospital where I have it done.  They have to have paid for themselves after a year or two or less.   I mean, what’s a person living on disability suppose to do?  That’s my rant and I’m sticking my it! 
If you’ve never had an MRI, they can look scary.  And if you are in pain, laying there for 45 minutes to 1 ½ hours is hellacious….so take your pain medication if pain is a problem for you.  Also, if you have claustrophobia, get your doctor to give you a valium or something but then you need to get a ride to and from the MRI.  For me, it works to close my eyes and picture myself someone soothing…but that does not work for everyone.  Also, make the follow-up appointment with your doctor when you schedule the MRI so you don’t have to wait forever to get in.  It doesn’t have to be the same day, just make the appointment before having the MRI. 
My job in life is taking care of the business of being sick.  It means checking every EOB (Estimation of Benefits) that the insurance carrier (Medicare in my case but I use to have private…until the premium was as much as my rent….for ONE person…so I lost it).  You learn to pick your battles.  I call and ask for a charity applications from providers of care most of the time. Or payment plans that are so low it’s ridiculous.  But having gotten rid of cable and any and all frivolous things (with the exception of Netflix) and eating less of my favorite things (no appetite anyway), I don’t feel guilty about asking for that kind of help.  I do everything I can to save a nickel here and a dime there.  You have to, especially in my situation.
Since I am discussing what my “job” is, I want to mention just a couple things that will help you manage your illness.
1.    When you go to an important doctor appointment, either take someone with you if possible, or take a little hand held tape recorder.  These are important appointments and you don’t want to forget what has been discussed.  If you take a friend, have them write things down for you.
2.    If you are on a lot of medication, make sure you keep a “day at a time” calendar and write down when it’s time to order the meds….give it plenty of time if you can.  Class three drugs can’t be filled before the time is right, but you can get your doctor to send you the prescription so you have it to take to the pharmacy.
3.    Speaking of pharmacies.  Pick one you like and stick with it.  Changing pharmacies is a red flag for the people-who-hate-people-who-take–painkillers-even-if-you-are-in-agony and there are plenty of those around.  Read my post about my pharmacist experience in “Pharmacists and Other Sorted Judges”.  It was a grim experience, but taught me much.
4.    Find out about all the financial help you can get and GET IT.  It’s a lot of work, but your wallet will thank you.  For instance, my Part D Medicare (prescription drug coverage) plan has “extra help” for those that need it.  The application is easy, you just tell them how much you get from disability (if you are on it) and what your expenses are (they like it when you don’t have cable and all the little extras in life), send it in and if you are approved, it’s discounted and you pay less.
5.    One last thing and it’s very important.  If you are looking for specific medical answers to your problems DO NOT spend a lot of time reading horror stories on the Internet whether it’s about NF or some other ailment.  I’m not doling out medical advice, just sharing my experiences.  That’s fine, if you want to read horror stories that don’t give advice….I try not to be too brutal.  It’s very important, if you ARE looking for advice, to go to the sites where they are medically qualified…and even then, you don’t know who they are so it’s best to go to a doctor who has been recommended to you by someone you trust.  Besides, some of that stuff scares the heck out of me!

I realize much of this is for people who live in the US, but if you live elsewhere, some of this applies to you as well.
===============================================================
When I think of how much faster we now move through the world it is mind boggling.  I mean, a weeks vacation during summer felt like ALL summer when I was a kid.  Now, a week moves like lightening speed, and it isn’t just about growing older.  Everyone feels like that in this, the digital age.  So much lost, not to be gained back.  Every generation says that, it’s true.
But my losses are different.  Because it isn’t just about reminiscing over someone I once had, for I had nobody other than a series of one night stands and a few “if only’s”  Nothing lasting.  As I mentioned earlier, I knew at 15 I would never marry.  Knew it like I know my own face.  Knew I would never have kids, never love anyone romantically for any length of time.  I just knew.  And it had nothing to do with my illness.    I just knew I didn’t have what it takes.  But that doesn’t mean it can’t happen for YOU.  Because people who are sick DO fall in love, get married, have kids.  So if that’s what you want, GO FOR IT.  Go for it all.  It’s there for the asking….I just didn’t ask.
So I’m here for as long as I’m here, I guess.  Every day is a challenge and a gift.  I’ll keep writing, hopefully you’ll keep reading.  Find something that you like to do that you can do, whether it’s reading, keeping a journal, raising your kids, taking care of an animal and most importantly, taking care of yourself.   And if you don’t have the energy for much of anything, that’s okay.  My therapist tells me my job this time around is just To Be.  Like the verb, you know?  You don’t have to sit on a mountaintop contemplating your belly button.
But you can contemplate yourself, your life, the people you love, etc.   And laugh.  Laughing helps.  Really.  Click on the YouTube at the top of this blog (to the right)  That laughing baby lifts my spirits no matter what.  I’ve laughed like that…so hard you lose your breath.
And thanks for reading.  Feel free to leave a comment if you like!



Monday, January 23, 2012

It Starts Here - (Part Two)

By the time I reached 18 I was so fed up with doctors I stopped going.  I remember quite clearly seeing my neurologist.  He was eating a danish while “examining me” which amounted to watching me walk back and forth, touch my finger to my nose, etc.  You know.  At any rate, I thought that I couldn’t be too bad off if he could be enjoying a pastry during the exam so I stopped going.  My parents’ were mortified but since I was 18, they really couldn’t force me.
Then, when I was 26, I was waiting for a friend to pick me up as we were going on vacation, and while I waited, I read an article in Newsweek about a new play that was opening called “The Elephant Man”  (I wrote this already but I need to stay on top of the timeline).  It was about a man with neurofibromatosis.  I remember having two clear, simultaneous thoughts: “Why does that sound familiar” and “OMG I have it!”  I started pacing, panicking.  Years later, it was revealed he actually had Proteus Syndrome, which is similar….someone in the Seattle Chapter of NF had it changed in the Library of Congress but the myth persists.
After my vacation, I joined the local (Minneapolis, then) chapter and asked my parents to come with me.  I thought it was a support group, but all they did was sit around and tell war stories, crying and carrying on.  At that point, the tumors were not detectable on me.  One woman looked at me with disdain and said “I looked like you at your age but look at me now”  Her face was covered with tumors.  I thought, nice thing to say, lady.  I never went back.  My parents were  equally disheartened.  I was at a loss, only saw doctors when I needed to; no “check-ups”.
When I was 22  (this is a tad out of order but I'm following where my brain takes me), I backpacked around the country for three months.  On this pilgrimage, I saw many places but fell in love with the Pacific Northwest.  I was lucky enough to do the traveling without medical complications so at the time, needed no pain medications.  I hitchhiked most of the way, even though I had a bus pass.  The busses didn’t always go when and where I wanted to and in 1975, hitchhiking was still fairly safe.  I would not recommend it now, and my parents would have had a fit if they had known. 
I stayed in youth hostels, got high, met incredible people along the way and tried to keep a journal, though that didn’t last long.  For some reason though, the sadness that has always haunted me my entire life would not completely let go.  I cried a lot, tried to figure out what I wanted to do with my life, etc.  I happened to meet some people who were part of a group led by that now famous couple who claimed a spaceship was coming in on a comet and would whisk them away.  They were in the news again about 10 years ago, having killed themselves along with several others.  I had been tempted to join them back then!  Strange, thinking back on it. 
But I had some fun times…I use to sneak in and out of the hostels at night, past the “lights out” time…a very cute boy by the name of Bobby (whom all the girls had a crush on) would let me back in at night.  One night, after crawling into my sleeping bag on the top bunk of the bunk bed, I noticed a little circle of light on the ceiling next to me.  I looked over the top of the patrician that separated the bunks (it was an old Navy base on Victoria Island) and saw a candle burning and the woman in bed sound asleep.  I slept in the buff back then and thought hard about what to do.  I mean, the place could have burned down!  Finally, I crawled out of my bed, walked around the corner, climbed the short ladder to her bed, and tried to blow out the flame.  Then I got a mental image of myself standing there stark naked blowing near this woman’s face. 
I started laughing, she woke up, saw this naked woman blowing in her face and screamed bloody murder.  I tried to tell her who I was and why I was there but by then, adorable Bobby came rushing up the stairs and turned on the light.  Everyone was up now, looking at me while I sputtered an explanation.  Bobby turned off the light immediately, the woman thanked me and fell back asleep, and I climbed back down, ashen and embarrassed.  It was one of the highlights of my trip, but not until years later!                                                      
                                                               
 I kept traveling after that, visited a friend in California and stayed in Arizona for a few months before moving back to Minneapolis and telling myself I would eventually live in Seattle or Portland.  Eventually took 11 years and by then, my brother was there so it was easier.  My sister had gotten married and she lived in Minneapolis before moving to Las Cruces, NM, and after her husband died she moved to Seattle too.  So now, all three of us live here.  I was 33 at the time of the move, and I remember being terrified.  I had to sell the house I owned, find a job, etc.  My mother, who was still alive at the time, looked me in the eye and said “Sherri, I’ll miss you like crazy but don’t you be a big chicken like I’ve been all my life,,,you go”
I almost fell over at those words (though we were sitting on a plane so falling over wasn’t an option).  My mother, G-d rest her sweet soul, was a bit of a hypochondriac, though she had real health problems in the end.  And she always felt guilty for ‘giving’ me NF, no matter how many times I explained to her that she had nothing to do with it.  No one in our family had it.  I was a spontaneous gene change.  I use to get frustrated with her inaction in life, and in all honesty, thought one of us would kill the other if I didn’t move.  She had a heart of gold and I loved her dearly; she had artistic talent but never pursued much in life.  That frightened me.
And as much as I loved her, I sometimes feel I have all her difficult qualities and none of the loving, heart of gold qualities.  Ah, life.
At any rate, I was now 33…I’d done so many self improvement things (including years of the est training programs), read so many books on the subject and participated in so many “alternative” explorations I was dizzy.  And no closer to enlightenment then I was when I popped into the world, full of tumors yet to appear.
Things began to get worse for me physically shortly after my move.  I was 36 when I had my first in a very long and seemingly endless series of MRI’s over the years.  The first neurologist in Seattle asked permission to show my MRI at a convention, without using my name, of course.  One of the doctors there asked if this person (me) was in a nursing home.  That’s how many tumors they saw.  And it was over 22 years ago, so there are many more.  I collect them.  Too bad I can’t sell the older ones; they’d be worth a fortune by now!
That’s it for now….



Sunday, January 22, 2012

It Starts Here (Part One)

I have been struggling with what to write on my blog.  I don’t want it to be remorse, but I do want to tell the truth.  So I seem to vacillate between light stories and my deepest, darkest fears.  I’ve decided (for now) to just start my story from the beginning and go from there….hopefully, someone somewhere will get something out of it….and if I falter or write something unrelated, you will know about it!
When I was five (1958), my pediatrician noticed all the cafĂ©’ au lait spots on my small, thin body and told my mother I might have a rare genetic disorder called Von Recklinghausen disease.  Named after the person who discovered what we now call Neurofibromatosis or NF.   My mother put it aside somewhere in her brain, and when the tumors started appearing, the doctors thought it was cancer.   I had two removed; one from my chest area, and one from my neck.  They came out and announced “We ruled out leukemia”  My mother didn’t even know it was ruled in.  I think she was in denial.
This was in 1964, and diagnosing NF wasn’t common, but I got lucky.  They started sending me to neurologists to keep an eye on it, but they had no idea about the non verbal learning disorders that accompany this disorder.  Not a disease, as earlier thought, a disorder that has to do with the genes.  Genes 17 and 22 to be exact, but again, I’m skipping ahead.  I’ll try and stop, but you know me (well, you don’t but you know what I mean).  There I go again!
So school was a nightmare.  I wanted to drop out so bad I could taste it.  Luckily for me, my parents pushed me.  One of the greatest gifts (perhaps THE greatest gift)  came from my father; the gift of reading.  He could be a terror around my poor grades because he just thought I was being lazy.  I do not blame him for anything.  That was the way it was back then….no one knew about learning disabilities (read my post “The Scapegoat”) and how they effect studying.   The only option for people like me was the “dumb classes” which I attended with the exception of one or two classes I actually excelled in….English and writing.  I had a writing teacher who told me I wrote like Dylan Thomas!  What a compliment that was!  I LOVED reading, and read Hesse, Thomas and many others who I can’t think of at the moment.  I still read a book or two a week.
But science and math?  Forgetabodit!  My dad would grill me on the multiplication tables endlessly to no avail.  I just couldn’t do it.  I’m better now and can do some things in my head quite easily, but back then I wanted to kill myself.  I actually have no memory of that, but recently, my dad told me mom (who has passed) worried about that all the time.  It is hard not to be depressed when everyone around you (your own age) seems to be breezing through school, dating, having fun….I did none of those things.  I had a few friends, some I am still in touch with after 40 years, but other then that, I just wanted to be done with it (school).
It’s funny, because I don’t remember being in pain back then.  I remember a lot of other things, but not physical pain.  Yet people from my past tell me I complained about it.  I remember the tumors being more tender during my cycle (which I wrote about already) but certainly not the kind of pain I’m in now.  I do, however, remember that is as clear to me as the day it happened.  I remember the day I confessed to a teacher that I would never marry, never have children.  I was 15 at the time, and the teacher (a religious study teacher) laughed and said I would change my mind.  I looked at him in the eye and said “This isn’t about making a decision…I just KNOW like I know the sky is blue”
So maybe it was a self fulfilling prophesy, or maybe I did know.  I think it’s the latter.  Because with all the negative, scary things about this disorder, the one gift I got out of the deal was the gift of sight.  I’ve written things about it on this blog.  It’s real, sometimes it’s frightening, but I do see it as a gift.
And as crazy as it sounds, with all my physical challenges, I see my NF as a gift too.  I told a friend of mine I wouldn’t trade it for anything and she told me she didn’t believe me.  But it’s true.  Of course I would rather not be in pain, you’d have to be nuts to want that…but here’s the thing.  It’s mine.  Mine to do whatever I want with, learn if I’m open to learning, and be a better person if I’m willing to do that.
Having it too easy is a curse because you don’t grow.  So be grateful.  I’ll end this particular installment now!
My actual high school....seemed bigger back then

Pain and the Weather

When I reached puberty, I noticed something odd about my pain.  Whenever I had my menstrual period or felt it coming on, my pain would increase twofold. My doctors laughed at silly old Sherri who made these wild claims, but years later they found that indeed the tumors could feel more sensitive or even painful around hormonal issues.  It took years before they acknowledged this and mostly because I wasn’t the only female on the block who told their doctors this news.  Sometimes it indeed takes a village, so to speak.
Years later, I noticed that my pain gets worse when there is rain moving into the region.  Of course, in Seattle it seldom moves out of the region, so the pain is mostly there all the time.  And this time, the claims are not being made by women only….I’ve asked around (the few people I know with NF, but also, online) and lo and behold, other people feel it more in weather where low pressure is hanging around, wreaking havoc. 
Let’s face it, people with other ailments feel them more in icky weather.  Icky being the most technical term I could come up with while writing this piece.  What is interesting to me is that cold doesn’t necessarily bother it; if the sun is shining it’s not quite as bad, but there are certainly exceptions to that rule.  If I had a busy day prior, going to doctors or grocery shopping (sadly, busy for me is a ‘down’ day for most everyone else) the pain is worse regardless of Mother Nature’s contributions.
So, out of curiosity, if anyone reading this has had these experiences, write so in the comment section and tell me about it!!

P.S.   The snow that landed here with a vengence is mostly gone.  Of course, I had to BEG the manager to shovel my walk because it was an ice rink.; no where for it to go when it started to melt so it just sits there and freezes over again.  Bad for people like me who could go shopping but not bring the stuff inside, fearing falling (too busy walking).  I knew you were all worried sick about it so I thought I'd tell you.  Phew!

Saturday, January 21, 2012

The Man on the Bus


He moved slowly down the aisle of the bus after depositing his coins in the box up front.  Though heavily clad in a long dark overcoat and hat, his disfigured face from bulbous tumors was in plain view, as were his hands once he removed his gloves.  People stared then looked away, though whatever force it is that makes people want to watch a disaster made them look again and again when they thought he wouldn’t notice.  But everyone knows you don’t need eyes to know when someone is looking at you.  Still.

I looked too, though for an entirely different reason.  A reason my twelve years old mind could not comprehend.  A kinship of a sort.  I sat in the back and watched him exit the bus.  As he walked down the aisle again, he dropped one of his gloves.  It was winter and frigidly cold.  He needed those gloves.  My brain screamed for me to pick it up and hand it too him.  I saw other people, adults mostly, see the same thing I did.  Not one of us gave it to him.  Not one of us helped.  Not one of us, pushed past the fear, the disgust, the sorrow or whatever else it was that held us back.  That held me back.  Me.  Only me.  I was the one that should have smiled and handed it back to him.  It was a test, and I failed it. 

I had just been diagnosed with Von Rheklinghousen disorder (Neurofibromatosis ((NF)) and although I was too young to understand consciously much of what I had been told,  my spirit understood we were the same, that man and I.  We were both cut from the same cloth.  And then, I suddenly realized, we are all cut from the same cloth.  Just different parts of it.

I have tried, over the years, to forgive myself for that transgression.  Part of me allows forgiveness, for I was only twelve.  And part of me feels I will never be able to get past that incident.


What’s strange is this:  About 10 years later, on Halloween, I was sitting in the window of a restaurant, waiting for a friend.  I glanced up, and lo and behold, the same man was walking briskly passed the window.  I suddenly realized that on this night, Halloween, he felt safe to be walking the streets without being stared at.  But I knew who he was.  And once I realized all that, the time for me to run after him and speak to him like the human being he was, had passed.   Again.

Monday, January 16, 2012

Wallace the Weather Bear

When I was a kid growing up in Minnesota, the winters could be brutal.  They still are, though I’m not there to enjoy it.  I left in 1986.  I had backpacked around the country in 1975 and fell in love with Seattle, but it took me some time to get it together and leave.  I owned a home, had friends, yadda yadda.   But, my brother had moved there in 82’, so it was a bit easier then it would have been, determined as I was.
At any rate, I am writing about those sometimes brutal winters.  My dad still lives there and I worry about him, but he visits here often and we talk all the time.  Today in Seattle it’s a bit like it was in Minneapolis (and still is).  We seldom get much snow at the elevation I live in; the mountains, of course, get it, though not much this year.  So the past few days have been interesting, and they predict more for the next few days…and then it will warm up and the weather will be saying "Huh?  Who, me?"

What I remember most (when I was a kid, anyway) was sitting around the den watching the television for school closures.  That was so exciting!  Would my school be named, or not?  Usually not, because Minnesotans prepare for this event the way two people should prepare for you know what.  I mean, there are more snowplows in that city then condoms in a drugstore.  Not like here in the northwest.  Too big of  an investment for a rare occurrence like the one we are having now.  So we wait for the rains to wash it away.   I'm not even sure you can buy a shovel here.
I remember the first time (many years ago) I heard about school closures here in Seattle.  I was still half asleep and the radio woke me.  I thought “What the heck station am I listening to, it doesn’t snow here, does it?”  But they droned on and on about schools being closed because of the snow and bad weather conditions.  Puzzled, I peered outside.  Nothing. Nada.  I don’t even remember seeing clouds.  A heavy dew, maybe.  I thought everyone had lost their minds.   They were predicting snow, but there wasn’t any.  Yet.   And the total they were excepting was about 3 inches, if that.  I laughed so hard I thought my bladder would empty before making it to the bathroom.  But they have those crazy speed bumps here, which the plows would ruin, so no plows, no school.   I guess.
I have a friend with NF here in the Northwest, though he lives two hours south of me and we can’t get together because it’s too far each of us to drive due to the pain.  He's an avid weather watcher (like my mom, rest her soul, who we called “Wallace the Weather Bear” after a t.v. character) and keeps me updated on all predicted horrors coming our way be it the weather or End of Days (could be the same?) .  Or as he calls these events: Ghastly and Catastrophic.  I love those words.  They describe so much, and he uses them to freely to describe almost everything from his pain to the weather.

But by the weekend?  This catastrophic and ghastly event will be a distant (and welcomed) memory.

Update:  Still icy, stil can't leave my apartment because of the icy hill I won't be able to get back up.  Three days and counting.   And my sister is without power.   Haven't talked to my brother, but he probably is too.   Yikes.  Suppose to turn to rain tonight.

Sunday, January 15, 2012

The Scapegoat (not me)

Like many people with NF, I have some non verbal learning challenges.  When I was in grade school during the late fifties and early sixties, all they did then was put you in the “dumb” class…no support of any kind.  That, thank heavens’ has changed, but the challenges to get the help one needs is still there.
This is a story about a 20 plus year friendship I've had with an educator who has more integrity in his (proverbial) fingernails than most people show in a lifetime on this planet.  I know because we were roommates for a time and I saw and heard him go about his life with his attention on his work, and the things that are important to him in life. 

Bearing that in mind, everyone knows of, and many have themselves been, a scapegoat.  The wrongly accused as it were.  When one has been the victim of that particular cruelty, it dazzles me that the same person would put someone else through it, knowing what it feels like when there is no (or little) merit to whatever accusations are flying about.  Perhaps revenge, even if it is against someone unconnected to whatever scapegoating they went through, makes them feel like they got their power back.  Nothing could be further from the truth.

True power comes from empowering others, not pointing a gun when a gentle talk would suffice, especially if the person in question has never, in their entire two decades of service, had one serious complaint against him.  From colleagues, students or their parents.  But new hires have to stake their little corner and if that means attempting to push others out, so be it.  Okay, I've digressed enough.

As an educator, my friend has served in the private sector for many years.  Private schools are a very mixed bag; my nieces and nephew all went to private schools before graduating and moving on to colleges; they are very bright did quite well.  But there we political challenges throughout their time there.  They met them all, but it wasn’t easy.
It is those political challenges that are now haunting my friend, whose goal is and has always been, to serve those in need; kids with challenges similar to mine.  Sometimes, the ones in need are not from the families giving the most in the way of endowments, etc.   Some are, of course.  Money and the ability to learn in the 'accepted' way do not go hand in hand.   

Most of these schools banter on about “diversity” and have much to say about it on their websites.  Unfortunately, that is often where the buck stops.  Although my friend does not, would not, no matter what, name names, or talk specifics about what is going on, others have.  Years ago, a woman who was hired strictly to fill the diversity slot (non-white) was also a roommate of mine for a short time, and she had no such integrity.  She was angry, frustrated and eventually left the school for somewhere with, well, integrity.
I am sure part of the sudden onslaught of criticism about him comes from the fact that he HAS been there a long time, and gets paid accordingly.  They are, perhaps, going for a “twofor” and have hired the gunslinger to dredge up anything that might make him look bad. 
For as long as I can remember,  parents of the kids he helps have phoned or sent cards of gratitude; the people who want to see him gone are unfazed by the good he does and he is not one to boast about his many achievements.   
The powers that be couldn’t know of the pre-dawn phone calls from parents needing help with their child’s SAT test that is coming up, or that term paper that is due.  Hearing the phone ring at that hour from my own room and knowing he would answer any questions with panache, grace and most of all, help, amazed me.  I would have let the phone ring!
So once again, the kids that need the most help will be left struggling should they succeed in their mission to get rid of the one person those kids can count on for help.  Once again, those against (usually the moneyed) having  “those” kids enrolled at the school will continue to call the shots, and the kids who perhaps, like me, have learning challenges but are as smart as any of the others may be left behind.   Like me, they learn differently.  But learn they do, and a great deal of that credit goes to the person they want to rid themselves of.  If they lose him, they could very well also be losing future doctors, researchers, scientists and educators.   

Talk about your learning disabilities!  The irony in all this is that we never learn.  If we did, they would see him for who he is; acknowledge him for what he has done, listen to the families who praise him, be grateful for those contributions and pray that he will stay beyond his retirement date.

Thursday, January 12, 2012

To Be

Chronic, intractable pain is many things, but the medical community, as well as the friends and family of those afflicted, often will not or can not see it for what it is most: a disease in and of itself.
Pain, especially neuropathic kind is almost impossible to control with the available tools out there, be them the standard western medicine kind or the “alternative” (I hate that word, but everyone knows what it means) kind like acupuncture (which as been around a lot longer then the “acceptable” kind of tools), reiki, chiropractic, etc.  I use them all.  With mixed, but for the most part little, results.
I’m writing this not so much to discuss treatment but rather the perception of those around me and others who must deal with the patients of this nasty, unrelenting disease that won’t let go nor let you die.  When you live at a “7” on the 1-10 scale of pain, life is brutal.  And what’s especially brutal, from where I lay, is the isolation, the loneliness, the feeling of being disbelieved, of having no life, of feeling guilty because you think that somehow, in spite of all the pain, all the pills that dull the mind, you should be trying to do something with your life for heaven sakes.  And of course, I think (whether or not it’s true) that that’s exactly what people are thinking about me.  Never mind that most often I can barely make it through the day, get myself in the shower at least every other day if possible, do my shopping, laundry, pay bills, fight with people about what’s left after Medicare pays their share, live on what I  get from disability and try not to feel guilty about the help that my father gives me.  It’s relentless.  I know I imagine some of it, but when you are isolated and in pain, the imagination gets the better of me sometimes.  I read a book or two a week, I write, I watch movies on Netflix and I talk to my cat.  That’s about it.  I do see friends occasionally, and I know they love me; but they have the life I use to have.  They see me once every few weeks, I try and look and act as normal as possible, and the perception is that I’m not trying hard enough to earn a living.  

When I was healthy (well, healthier) and could work, not talking to someone for a few weeks was and is perfectly normal.  Now, a few weeks feels like an eternity.  I sometimes think the reason I call my providers and argue about the bills is so I’ll have someone to talk to.  I mean, I talk to my cat, Oliver, but….well, you know.
Something happens to people’s perceptions when they see someone who is ill.  They think that if you are ill, you must also be stupid, uninformed and undependable as well.  I don’t know why that is, but with the possible exception of Stephen Hawking, it seems to be true.  If you can’t work, you have no worth.  It’s so backwards it’s daunting.  Of course, in this world, especially in the West, contributing to society in a way that earns you money and recognition is all that matters.  The amount of time I spend contemplating life and it’s mysteries is a gift.  It’s the exchange rate for my physical pain, and I actually like that part of it.  I meditate
To live life as a verb.  To Be.  Just, to be. That is the gift, and I encourage those who deal with this awful disorder to use it.
Sidenote: When one is in pain, their facial expressions often mimic anger, so people look at them and think they're mad about something when all they are is in pain.  It's endless.  But people can be educated.

Friday, January 6, 2012

On A Dime (Excerpt)

The following is an excerpt from On A Dime which can be found under Pages to the right of the posts.  The original is a longer piece and this is out of order.  It’s not that I don’t want to write new things; it’s that sometimes I get into the same mindset as when I originally wrote it.  .

As this NF of mine continues to worsen, I have learned a few things along the way

I’m aware that everyone, not just sick people, must deal with the “gnats” in life, the things that breakdown.   Whether it’s the red tape of bureaucracies, a fender-bender or an inaccurate charge on a credit card, it’s all part of life. Yes, everyone must deal with those things, whether or not we sick and/or in pain. 

When you are ill, you must be more vigilant about not letting the gnats destroy you, especially if you are fighting alone.   If you have no one to help you make the calls, write the letters and correct the mistakes, you best steel yourself against a bureaucracy that wants you to give up.  And make no mistake that is exactly what they want you to do.  When you are least able to advocate for yourself, when you are at your worst physically, mentally and emotionally, that’s when you are asked to perform ridiculous feats to prove yourself worthy of disability or other help.

The non-stop barrage of problems not related to my medical condition makes it nearly impossible to concentrate on finding ways to feel better (getting well isn't an option  until they find a cure).  Instead, I spend my time putting out fires and searching for everything from adequate insurance to government programs that might help, not to mention finding ways to save money.  

Recognizing the difference between being angry and being heard has been especially challenging.  While finding your power and using it appropriately is important, so is learning how to center yourself.  As we discovered from nine-eleven, as well as natural disasters, we have little or no control over anything.   Every day in this country, thousands of people are suddenly faced with the decisions I had to make.  I know it isn’t as sensational as nine-eleven, but it is as every bit as devastating.  And with no telethons, no emotional support, no point person to say, “Here’s what you do,” it’s re-inventing the wheel with each new person it touches

The world expects you to move on, even if you are unprepared to do so. It’s too uncomfortable to be around someone who is ill and in need. Giving to charity is easy because writing a check is impersonal. Giving of yourself is more difficult because it demands that you look, listen and actually hear someone’s story. 

And no matter how much they love you, even family and friends grow weary of illness.  It’s a demanding, tiresome experience and leaves people feeling helpless, especially when there’s no cure.  I believe that somewhere along the line, we started confusing “co-dependency” with helping someone in need.  Certainly, a sick person should do the most they can for as long as they can.  But no one knows the upper limit better than the sick person.  “When you have your health, you have everything,” becomes much more then a familiar speech at Thanksgiving if you are ill, especially when it is chronic or incurable.

The twisted truth in all this is that when I am in a rage about my situation, the doctors, the pills, or the system that has let me down, that is when I have flashes of my own power.  These flashes usually include a spurt of euphoria, the feeling that everything is going to be all right.  The notion that right now, right this moment, I could die or I could live, but either way, it’s going to be okay.  But these moments are in no way the norm.  The norm is hoping that the effects of the painkillers last from one dose to the next.  It’s hoping that they work the way they are designed to, and that I will remember to take the next dose.  The joke however, is that if I’m feeling okay, I sometimes forget to take the next dose or convince myself I don’t need it.  Then the pain is twice as bad when it comes.  And it will come.

Unfortunately, because we’re such a results driven society, many people’s first reaction when they hear that someone is ill is to “figure out” a way to “fix” it.  Sometimes, all the sick person wants is an ear, not answers.  But few people know how to let a sick person just be.  Strong or not.  Happy or not.  In pain or not.   That is the way, of course, we should all live our lives. 

But when you lose your health and your wealth, there is no other choice.  And you better believe life turns on a dime.  Not even.        

Click on "Older Posts" to read more!