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Saturday, December 31, 2011


I sometimes feel my body is a microcosm of all the pain in the world.  Not the suffering, for as I have written often, I feel suffering is a choice.  Pain we have no control over but all you need to do is look at the smiling faces of those living in squalid conditions and ask yourself “how can they be smiling?” to understand that choice.  And of course, when one knows nothing of “I” technology, designer coffee and designer clothes, they have nothing to compare themselves to, do they?  Comparing.  It’s the Queen of suffering.
And there are times when I choose to suffer.  Like stating that my body is a microcosm of the pain in the world.  I didn’t mean that in any ‘holier than thou’ way…..I just meant that there is so much pain and suffering in the world, when one is laying flat on one’s back and the pain just keeps jacking up, it makes one wonder about that age-old question, why?  Why me?  What am I here to learn, and am I here to learn anything at all, in fact?
I’ve written that the body and the mind want are sometimes (most times) at odds with what the soul needs, and that is the most difficult thing to accept.  Especially, when like me, one has family and friends who despite my situation, are still in my life.  Sometimes I am such a bitch (like last night…a good friend came over and we went to a movie and I was so stressed and in so much pain I was ridiculously out of control verbally) I just wonder why they stick around.  But that’s what friends do, regardless.  And there is much that I put up with (with everyone) as well.
It’s very difficult sometimes, to watch  my friends and family having full, active lives….living, loving, working, playing, etc.  Yes, they have challenges.  The difference between my challenges and theirs is that they get through to the other side and I don’t.   I guess that in my case, getting to the other side of the challenge is more of a mental thing than a physical one.   And that is what is so darn hard to accept.  And where suffering comes in.
If I don’t think about it, I am okay.  When I start to think about how I’m getting worse and worse, and scared to death of being paralyzed then tucked away somewhere and forgotten about except once or twice a month, it makes me want to take that ultimate step into the darkness…and find out once and for all if there truly is something on the other side, or if all those experiences I’ve had visually (and I’ve had many…and no, they were not drug related because most of the experiences happened long before I started needing medication) were just my mind playing tricks on me.
I hope it’s the former and not the latter.  Because otherwise, what would have been the point?  Why all these years of pain (and yes, sometimes, suffering) if there is nothing but blackness and nothingness and an eternity without my soul?  I remember thinking that when I was eight years old and my grandfather died.  Just sitting, staring at the stars outside my bedroom window, knowing I’d never see him again and wondering…where is he now?  Where is his soul?
If I have a soul, where will it be?  Just pondering.  My faith is important to me, but I think that if G-d is real, He wants us to ponder. 

Saturday, December 24, 2011

Budging by Smudging

Sometimes, the medication I take for the pain gives me nightmares.  If it happens too many nights in a row and I’m crazed from lack of sleep, I smudge my room.  For those of you unfamiliar with this, it’s really simple.  You get a “smudge stick” which can be sage (which is what I use) or a combination of other herbs.  You just light one end, and when it starts to smoke (much like incense) you just kind of wave it around the room.  I say a few words of prayer, asking that whatever spirits may be invading my sleep move on.  Very simple and I just make it up for whatever the occasion.
If you’ve been reading my blog, you know that my kitty cat Oliver has been having health issues; his blood pressure was very high and he’s on medication for that, steroids for something else, and potassium because that’s low and could be what is causing some of his behavioral and health issues.   Try getting those things down your cat.  Mostly, I use pill pockets, but they are very expensive and I go through them quickly, along with his pills which of course, are not covered under my health plan.  All told, the little guy cost me at least $125 a month or more, not including doctor visits.  He only gets the good cat food.  Sometimes, with all the hunger in the world, I feel guilty spending that much on his food, but he is my family and I love him.   So I give what I can when I can to food banks.
Okay, enough of the back story.  Oliver’s personality did a 360 on me; he use to cuddle, lay on my lap, sleep with me, and generally, stay close.  Now he seldom goes anywhere near me and sleeps in the lviingroom at night, instead of in my bed next to my head.  Cannot budge him.  I miss him like crazy, but since he doesn’t feel well, I’m giving him the space he needs.  Only for some reason, last night, I did a smudge in my room, and asked that whatever is scaring him go away so that he can sleep with me again.  I kid you not, after four weeks of not sleeping with me, that night, he crawled into bed with me.  Was it the smudging?  Who knows.  I’m just glad he’s back….hopefully, he’ll stay.  He still keeps his distance during the day.  Still wants treats,
Still my guy.

Wednesday, December 21, 2011

Practice Grace

The lesson to “never compare” is a difficult one to learn…and to keep learning every day of our lives.  I sometimes minimize my pain by comparing my situation to people who have greater challenges.  And sometimes, I do it the other way around.  The “You think YOU’VE got problems” attitude.  Both are toxic to the body, mind and soul.
First of all, no one lives in anyone else’s life.  So when I see someone feeling sorry for themselves because they haven’t got this or that, or the world isn’t moving in the direction they wish to go, I sort of seethe inside, thinking they no nothing of true suffering.  But then, I’m not in their shoes and haven’t a clue why they feel the way they do.  I don’t know their ‘back story’ even though I think I do.  The old adage “You don’t know what goes on behind closed doors’ is a truism we must embrace so as not to judge anyone, most of all the people we know the least.  Or the most.  Sometimes, it’s the one’s we know the most that presents the biggest challenge.
I wrote a piece about disabled parking places…that’s a good example.  When I see someone get out of their car with a disabled sticker hanging from their rear view mirror, I tend to look at them so I can “tell” if they need it or not.  Even though I, myself, probably look as abled body as anyone.  You can’t ‘see’ the pain I am in and the need I have to walk short distances.  Heck, even my family and friends forget, and start walking too rapidly for me.
I use to wish I could make my pain doctors understand my level of pain by just touching them and having them feel what I feel.  But truthfully?  I would not wish ONE MINUTE of my life on anyone else, especially those I love.  You can’t really learn from that anyway because you’d have to feel my pain day in and day out for years to really get it.  And that, I especially would never wish on anyone. 
Practice Grace.  Often.  Always.

Tuesday, December 20, 2011

Bumps of Beauty

Someone wrote to me and asked me to move this post up front for a spell so here it is....

This on is meant to be read outloud straight through...

Airbrushed beauty beaming up from the pages of magazines and down at us from billboards marching proudly on our city streets, brightly lit at night so that we won’t miss the larger-than-life smiles filled with too-white teeth, straight as the light bulbs that shine on them, the abundant, radiant hair that glimmers too, the creamy white, black or brown skin flawless and blemish-free even though we know it’s not true, we believe it so we buy the soap, the toothpaste, the clothes and once upon a time, the cigarettes but that’s all over why is there not a law against the rest of it? We know it’s not true, because we see each other on the streets, in the workplace and at school every day and we see the imperfections we are all born with save the few who make it to the pages of those magazines who still, even with the perfections, must have more perfection airbrushed into the lines and creases to make sure that perfection doesn’t get by us mere mortals.

We know it’s not true, as we stare into the plate-glass windows of the stores that hold our fondest wishes; the things we covet and believe we can’t live without and behold! We still live. The things just out of reach but will never be ours and even if we get them they somehow leave us feeling empty which should be a lesson. As small children we played in and around the boxes that held the toys rather than with the toys themselves but then of course, we got older and that wasn’t enough and the airbrushed bodies that hold the goodies we now want but most times cannot have start to look good, so we begin to covet them and continue to do so forever unless we learn it’s not true, oh my.

We know it’s not true when we are born with the most imperfect bodies even more imperfect than the normal overweight, blemished, crooked smiled, crooked-nosed, large-jawed, legs to short, arms too long, hair not right, neck to long, butt to big human being. And here we are, with bumps that cover our bodies in numbers too many to count that send us into the shadows in shame or to the operating table alongside the ones with the tumors inside, large and small that run up and down our legs and arms, in our chests, our organs or crawl up our spines leaving us in mind-numbing pain or confined to our wheelchairs or beds far away from the billboards of beauty. But it’s okay, because we know it’s not true.

And if that’s not enough there are those who can’t walk, can’t see, can’t hear but miraculously, somehow, overcome all those obstacles and emerge more whole than the airbrushed beauties the smart ones know to ignore.

What a miracle it is to be born whole and how unlikely, is it, really, for that to happen given all that could go wrong in the cell dividing process of becoming human. The culprit, thanks to science is identified in genes 17 and 22 on that ladder of life, DNA. That twisting, turning Escher-like double helix , the tell-all spell binding truth of who we are, what we are likely to become.

We wait for the time-bomb of our NF to go off; will it be soon, while we are young? or will it skulk around in our bodies, dashing about or hiding behind organs, tissues, nerve-endings, tiny, meaningless until — until something, who knows what, ticks it off and poof! they grow, these tumors, these parasites, pushing about like bullies on the playground, growing faster, bigger then the rest of whatever else is in there and soon, like the bully, it pushes on the nerve-endings too much and the host body is racked with pain as the doctors scratch their collective heads wondering what in the world is wrong, have you seen a psychiatrist?  An MRI? Well, okay and we slide into the cigar-like tube with earplugs to dull the sound of the thud-thud-thudding and the cluck-cluck-clucking like the coconuts used to make the sound of horses running in  Monty Python’s Flying Circus. I laughed so hard in the first of my 30 or so MRI's that they had to stop and start again but it turned out not be funny at all. 

So my first surgery was at 40 which is late, so I’m told and according to that first MRI at age 36 when there were so many tumors one neurologist who didn’t know me assumed I was in a nursing home but was, miraculously, living my life just fine thank you. So this was quite the shock to learn that I could be paralyzed from the neck down if I didn’t have the surgery and maybe even if I did.  It all depended on if the tumor was sitting there like a grape or wrapped around the nerves (which wouldn’t be good) but it was like a grape and I am not paralyzed though sometimes with fear, I am.

 So now it’s back, the pain though this time in my lumbar spine and the pills I am on to stop the pain could put out my entire apartment complex though my body has become accustom to them and they practically don’t work, which means trying different pills oh heavens this is too much I just want to be normal, whatever the heck that is.

Somewhere in our hearts we know it’s not true, all the hubbub at the Oscars, the Emmys the Grammy’s, all that glitter and perfection all gathered together so we can gawk and wish we were there, or them or both.  If this NF of ours teaches us anything it should teach us that it is not true; not the billboards, magazines, movies, television, awards — none of it.  None of it is true.  We are true.  We with our imperfections, our bumps, our tumors, our disfigurements teach us this truth.  We are the truth because one must search deeper to find our beauty and any treasure hunter will tell you that the find  makes the dig worth it.

Monday, December 19, 2011

Oliver's Outing

I wrote this a long time ago....but I want to post it (I never did) even though it's a bit long.  It's about my cat Oliver, who at the moment is very ill (high blood pressure and old age).   I am terrified of losing him.  I hope you enjoy reading it as much as I did writing it...though not experiencing it! 

Another Update!   The Vet called and told me all his blood work looks fine!    If he needs more diagnostics, I'm not sure what I'll do because I sure can't afford it.

Oliver's Outing

I named Oliver, my cat, for Joe Oliver, who played short-top for the Seattle Mariners one season.  I was told later to never name your pets after players due to the fickle factor. Better to name them for a ballpark.  I don’t know, maybe it’s just me, but Safeco seemed undignified for him and every other animal on the planet, domesticated or otherwise.  I’m not even sure if Safeco is a good name for a ballpark.  At any rate, since Oliver was also a famous orphan, I figured the name suited him.  I rescued him from an animal shelter after he had been caught roaming Bell Town, a distinctly unwise part of town to roam for cat and human alike.

We fell in love instantly.  He, with his sleek gray/black tiger-like markings, loving disposition, emerald green eyes, and me, with my bowl of food.  Don’t let him fool you. In spite of his tough-guy look, he is no longer one to trip the light fantastic.  And since we now are best buddies, I would naturally know if something were wrong.  You know, little things only a mom would notice, like pee on the bathroom floor. It happens very infrequently, but since male cats can die soon after becoming ill with a urinary tract infection, I brought him in for a checkup just to be sure, and $80 later found out that he was fine. They put him back in his carrier, which was just one of those cheap cardboard jobs.  However, if put together correctly, they work just fine.  At least, it had always worked for me.

Well, it wasn’t put together correctly, which I didn’t notice until the unthinkable happen.  I walked outside, opened my car door, and bam!  He broke out of the side of the box and made a mad dash under my car.   Heart racing, I ran into the clinic yelling for help.  More concerned about me than the cat, three people immediately responded and at that point, Oliver was still within catching distance.  But not for long.

Realizing he was being chased, he darted around the corner and down (luckily) the quieter of two streets.  The main street would have killed him instantly.  He continued to foil all of us, and eventually ran into a someone’s wooded backyard which was full of all sorts of places a cat could hide in fear or have a good time, depending on the kitty’s point of view.  There was a reflecting pond, plenty of foliage, shrubbery, trees, fencing and little statuettes.  Behind their property, there were more trees, more houses with more shrubbery.  Mother nature was everywhere — paradise compared to the little apartment I live in with just a few trees to gaze at from the top of my couch.  Heck, I wanted to live there.

I figured he had found Nirvana.  I figured I would never see him again.  I figured I would throw a rock through the window of the vet clinic at 3 the next morning for not securing his carrier.  Man, I was stressing, screaming at all the people from the clinic, telling them it was their fault.  I had gone mad. 

Luckily, the people who lived in the house where Oliver ran were the nicest people on Earth.  They let me hang out at their house for many hours that evening, and 13 hours the next day.  Carol, the woman of the house, brought food and water out to me and let me join the family for dinner that first night.  She crouched behind fences and darted through the woods as if it were her own dog, Stanley, who was missing.  In fact, she kept Stanley, a bulldog, in the house the whole next day which couldn’t have been easy for Stanley. 

My spinal tumors and subsequent pain make traipsing through the woods unwise, so I spent most of the time just laying flat on a little patch of lawn, bits of kibble on my chest, calling plaintively for the elusive Oliver.    I caught a glimpse of him early the next morning and was within grabbing distance, but he would have none of it.  Later that day, he was literally eating out of my hand but was still fairly freaked and wouldn’t let me touch him.  I cried. Hard. I sobbed, screamed, cursed and generally bawled  myself to sleep that night. 

I got up at 4 a.m. the next day and a very, very dedicated friend picked me up at 4:30 to go back to the scene of the crime.  The people at the vet had recommended I come at dawn, stating with authority that he would come only to me. The night before, they suggested I leave my T-shirt (luckily, I had a sweatshirt on over it) with my scent and he would come for sure.  They pretty much kept telling me he would come.  He didn’t come. In fact, after two hours that pre-dawn day I hadn’t spotted him at all, and left for home, dejected, sad and exhausted, saying a prayer and leaving an offering of a chewed-up, soggy, cat-nip filled mouse.  Earlier, the people at the vet clinic put up signs everywhere, and brought over protective gloves for me to wear once I found him, warning me not to let Oliver see them or he’d get scared.  Hello?  Who am I, Doug Henning? 

Finally, around 5 p.m. the third day, just when I had mentally let him go, sending a prayer that he’d be safe, the vet called telling me he had been found by a neighbor.  It had been over 48 hours, and Christina, the neighbor was able to cage him.  I figured he was so exhausted, he didn’t care who caught him. I was glad I had spent so much time introducing myself to everyone in the neighborhood and basically being a pest.  EVERYONE knew who he was by the time he was caught.  He was exhausted, dehydrated, wheezing, but basically okay and I think, happy to be home.  But that’s my point of view.  Of course, by the look he was giving me, I could only assume he had thoughts of his own:

Where have you been, you idiot?  Man, there I was, minding my own business, when suddenly I was scooped up and thrown into a cardboard box posing as a cat carrier.  And all because I peed on the bathroom floor instead of my litter box.  At least it was in the bathroom  Geeze, you’d think I had threatened you with an Uzi.  But no, you totally freak out and decide I need medical attention, taking me to this stranger who stuck something up me to extract urine and test it for who knows what.  It hurt.  I only weigh 12 pounds.   I am tiny and I was scared.  I meowed really loud to let you know but you didn’t care, you just let those mean people do their thing. 

And then they didn’t even close my carrier (if you could call a cardboard box a carrier) correctly and you were too stupid and too trusting not to double check so of course, I did whatever any red-blooded kitty would do.  I bolted in fear.  I didn’t know what I was doing, I was in survival mode.  I ran and four people, one with a net, came chasing after me. What would you do if someone with a white coat and a net came chasing after you? 

I ran into all these trees behind some strangers lawn.  It was real pretty back there, but very scary.  There were crows, squirrels, strange cats and all sorts of other unknown creatures.  I ran up a tree and stayed there late into the night, until the coast was clear.  I came out and no one was around, so I skulked around looking for food and water. I was really scared, hungry and thirsty.  And you, my owner, the person who supposedly loves me, apparently went home for the night. What the heck, you could always get another cat.  Me, on the other hand, could only hope to be found by someone who would take pity on me, feed me, and with any luck, take me in. 

Incidentally, the water in that stupid reflecting pool you think is so pretty is filthy.  I would never in a zillion years drink out of it.  If I did, I’d probably get parasites.. But hey, don’t worry about me.  My toys were no where to be found, my litter box gone too.  I had to poop and pee in the great outdoors, but I was so scared, I could hardly go. I realized I  was now thoroughly domesticated.  How embarrassing.  You finally came back the next day and chased me with some other strange woman, and now I was really freaked. 

You were acting like a nut, crying and screaming, sobbing and calling my name.  I figured you had lost your mind, and was trying to decide if maybe life wouldn’t be better away from your craziness.  But, I missed my food, my clean water, my warm sleeping place and my litter box.  Still, you were freaking me out, so I hid a second day, till finally I was so tired, hungry and thirsty, I dragged my ragged and beaten body up on a nice lady’s porch and she put me in a carrier and took me back to the vet, where you finally showed up.  Geeze, what was the big deal? 

Can’t a guy go on vacation for a couple of days?  Okay, okay,  once I was home I got brave.  I never want to go through that again.  Of course, minutes after I was safe at home I cried at the screen door to go out.  I can’t help it, my brain is the size of a filbert. Humans are the ones who wanted us for household pets.  We don’t know how to survive out there anymore, and it’s your fault.  Now I still can’t pee right.  I’m afraid of my litter box.  But I figure if I act a little crazy you will worry about me, give me special treats, and I can stretch this out for a long time. You are so easy to manipulate it’s frightening.  I have always wanted to see Egypt, the birthplace of my ancestors.  Maybe I’ll go there next time.  Anyone know where I can get a cheap flight?

Friday, December 16, 2011


I seem to be speeding at an ever accelerated rate to the finish line.  My finish line.  But this is not a triumphant finish; this is one of defeat.  Which could, I suppose, be considered triumphant.   Even as I write this, I feel (in my body) how long it’s taking me to simply survive compared to a mere six months ago.   Of course, time itself is moving much more rapidly, and if you are to believe the Mayans, will come crashing to an end in December of 2012.  Watch the dvd on it: “2012: Mayan Prophecy and a Shift of the Ages” it’s quite fascinating because it’s based on math and science, not religion.   I use to think that as we age, time seems to move faster (which is true)  but this is more than that.  Oh well.

The acceleration of my NF is another story.  My hands are losing their coordination, I’m numbing out from  the waist down to the point of feeling nothing….numb like when your hand goes to “sleep” and you need to shake it back into existence.  I can shake it back for now, but who knows how much longer.  The neck brace I wear to try and reduce this stopped working a while back.

My body “jumps” higher and higher when I’m laying down reading, resting, watching television, etc.  Very scary.  All very scary but most especially is the loss of sensation from the waist down as well as my balance.

I should be using my walker more, but at 58, I am resisting it like hell.  But I fall into walls in my apartment; I use the cart at the store, so I’m okay there, and I rarely go elsewhere.

The stomach upset due to the medication has taken a nasty turn.  I use to control it very well with diet, eating Activia with fresh fruit and flaxseed meal every single morning without fail, coupled with magnesium (500 mg) twice a day.  That stopped working a while back.  I am afraid my bowels have become like my bladder: neurogenic….I catherize myself, but other than laxatives, there isn’t a whole lot one can do.  I added and subtracted certain supplements,  I switched to a lactose free yogurt, but the only place I can get it is the PCC or Whole Foods, both of which are miles from me.  But I go to the PCC once every other week and stock up.  So it’s better now

I see a “healer” who does a lot of naturopathic things such as acupuncture, etc.,  and she gave me a few supplements, explaining how each worked.  These are not your mother’s supplements and you can’t get them just anywhere.  But she trusts her source and I trust her, so I am taking them….more pills….but with names like “Spanish black radish” and one other that I forget, ya gotta love it.

I am terrified at the sudden acceleration; tumors on my face are cropping up overnight….I don't see friends and family that often (well, when I was healthy the amount of time I see people seemed normal, but when one is isolated, it feels like an one is to blame, and I'm not guilting anyone over it).  Still,  I sometimes get these calls from friends who are ill with some cold or something and they say things like “I’ve been in bed for 24 hours, I can’t leave the house, I’m losing my mind!”  And honestly, I don’t know if I want to laugh, cry or run screaming into the night.   But alas, I’m in too much pain.

And really…until and unless you walk a BLOCK in someone else’s shoes, one can’t expect anyone to ‘get it’.  It isn’t necessary.  I don’t know what it’s like to be blind.  But having this disorder has taught me patience, understanding and an ability to support those who are going through a challenge. 

I was at the dentist the other day...a long, long, two hour appointment and they know my situation and can tell how uncomfortable I was.  The dentist kept telling other people how much pain I was in the last time, but how I insisted on finishing up with the appointment.  Truly, what else could I have done?  But one of the assistants said "There are people who come in here complaining about this or that and make it seem like the end of the world, and here you are, with everything to complain about, and your not"  I know she meant it as a compliment, and I thanked her for her kind words, and the truth is this: I complain plenty, just not now...and I can sit back and NOT complain because that's what this disorder has taught be patient and thankful for the blessings I do have.  But I'm not that way all the time, trust me!

And, as bad as it gets for me, I have a roof over my head,food in my belly and people who love me in spite of my many shortcomings.  Yes, I lost my health insurance.  But I haven’t lost my friends and family (so far). 

Friday, December 9, 2011

Homebound Technology!

My 87 year-old father is more connected to technology than I am (age 58).   I have been trying to persuade him for several years to get rid of his ancient IMac and get a laptop.  When he was here visiting recently, my sister-in-law took him to Best Buy (or rather, he and my brother sat in the car while she ran in and got him an IPad) and sealed the deal. My sister was concerned he would have trouble once he got home, but so far, no worries.  His built in camera  allows him to Skype (everyone but me, since my laptop is almost as old as his old IMac) his kids and grandkids, while I am happy to browse the Internet.
To save money, I recently got rid of my cable (except for reception in order to keep the price down on my “bundled” services which include the Internet and phone) and went with Netflix streaming.  I had it anyway, but use to watch on my computer.  So I splurged and got a Blue ray dvd player (on sale) and am a happy camper.
Except now I want to Skype my niece and nephew, who are away at school.  And another niece leaves for school next year.  And of course, there’s my dad.  So I ordered a camera for my laptop, cheap at $14.95.  And more RAM, cheap at $35.  Can’t get a new laptop for that, and I don’t need one anyway. 
My computer guru taught me well.  I know PC’s (aren’t they all PC’s?) are more likely to get viruses, but I have a LOT of security and, and this is the most important, I run diagnostics on my PC three times a week.  It only takes about 15 minutes and it keeps things humming.  Being on my back in pain from the not-so-friendly tumors, I need to stay connected.  I honestly can’t imagine what my life would look like without this technology….of course, I read a book or two a week (without a Kindle or a Nook) but it makes a world a differece when you are home-bound!
I’m just hoping that once this stuff gets here before my laptop decides “Okay, I’m gonna crash now”  Bite your lip!  My only request to dad is that he be dressed when we Skype.

Thursday, December 1, 2011

Pharmacists and other Sordid Judges

By now, most of you know what NF is and how it affects me. If not, run the YouTube or read below. I don’t want to repeat myself, except to say that the pain and numbness continues to get worse. While being sick in America often means negotiating a road littered with land mines, they multiply rapidly for those with ‘invisible’ diseases. What you are reading was part of a letter sent to all of my states senators, insurance commissioner, the pharmacy in question, and my insurer. It can feel daunting to fight the powers that be when we are sick and in pain, especially if you are fighting alone, like me. However, it’s important that we keep doing so, drawing support from friends, family and sites like this one. So fight the battles worth fighting, and with all your might. Let go of the ones that don’t matter.

Your heart will know the difference. Listening to it is what’s hard. On April 2, 2004, I went to my pharmacy to pick up my regular prescription of my painkiller, mailed into them from a large and respected University’s multi-disciplinary pain clinic. The pharmacist informed me it would be $62. It's normally $9. He said it "wasn't worth it" for him to submit a claim to my insurance because they didn't reimburse him enough. In a condescending and punitive tone, he advised me to have my doctor call my insurer if it was a problem. Or, I could take the generic brand which he knew I could not tolerate. I had tried it. (Not only that, once he gave it to me and labeled it as the non generic brand. But that’s another story….and a definite law suit if I had been willing.) When I reminded him I had tried it, he said “not my problem.” I live on a very small disability check, and at least $200 of that goes for medication each month, so this was no small increase. But I had no choice, I needed my medication. I phoned my insurer myself, right there in front of him, and spoke to someone who immediately wanted to know the name of the pharmacy and the pharmacist. She said he was a preferred provider and had no business making that decision. She faxed me some forms to fill in, and requested I bring it to her along with the receipt for the meds he charged me for. I was informed they would be investigating the pharmacist and that I would be getting a refund for the difference.

When I called to check on the status, I was told they were investigating all my claims through the pharmacy. That frightened me, because although I have done nothing wrong, I am aware of what this country is doing to doctors who prescribe narcotics and to the patients who use them. Still, I was thrilled they were on my side, even promising me that since he did something illegal, they would break their contract with him, and I should switch pharmacies. One might ask why I didn’t just switch pharmacies in the first place—it’s easy enough to do. But switching pharmacies, doctors or clinics in this "anti-narcotic witch-hunt frenzy" the nation is going through, would only look suspicious. So the insurance company had to write me a letter asking me to switch pharmacies, and listing other possibilities in my area. I believe the pharmacist did this on purpose, to trigger an investigation that would focus on my need for the medication, even though it was, and still is, legitimate.

The notion that if it’s legitimate then you have nothing to be afraid of is pure garbage, unfortunately. I have ONE doctor, ONE pharmacy and I have refilled my prescriptions at the same intervals and at the same dosage since I started taking them. I see my doctor as often as required. He is one of the nation's foremost authority' on pain control and I feel lucky to have him. But since my tumors are inoperable, there is nothing they can do but control the pain. And the pharmacist is well aware of my medical condition. It would be one thing if I were a stranger; I understand he must be careful. But that wasn’t the case. As mentioned, I’d been going there for years. If my insurer pulls the plug on my medication or my membership, I’d be in deep trouble. When I pressed my insurer for information, I was told "this is a controlled substance, you know." I knew then who they were investigating. At the time this happened, I was very politically active (from my laptop flat on my back) in this regard, and knew my concerns were not unfounded. I don't expect anyone to understand how painful it is to live with inoperable spinal tumors, but I am doing nothing illegal or immoral. In fact, I have cut back on my meds from what I was taking a year due to alternative treatments.

Plus, I'd rather live with a little more pain then the side effects of these powerful drugs. I'm referring to constipation and stomach problems, not a sense of euphoria. Used correctly, pain patients seldom, if ever, get addicted the way the DEA is selling it. That's because the drug is introduced slowly, over time, a process called titrating. We don't crush and inject or snort it. We use it for our pain. Can you imagine an insulin-dependent diabetic being told they can't get their insulin anymore? I know it's the class of drug at issue, but it treats a disease, just like insulin. Even if they could operate and get the tumors that are causing my pain, the damage to my spine from them can't be fixed. So yes, I need a narcotic the way a diabetic might need insulin. While the uneducated might argue that a narcotic isn’t a life-saving drug, I submit that it is indeed. I would not be able to get out of bed, let alone do my own laundry, shop for my own groceries and clean my own house without them. And I still can’t do all of those things on the same day. Based on what my government is doing to control these substances, I’m guessing they just want us to go away. A ‘survival of the fittest’ kind of policy. To put it bluntly, the DEA lies about their policies in the sound bytes we are so painfully (no pun intended) use to hearing. But you can go online to the DOJ website and read the truth. The government's fear of narcotics and addiction stems from the inability for any administration to stop the cartels from the harm they are doing. So they are going after the easy target: patients and the doctors who treat them. For the DEA, it’s like taking candy from a baby. But it's hurting millions of people.

 I had several examples of doctors who have been prosecuted in here, but this was an old piece that I brought back up, and I don’t want old information on here until I have had a chance to check on it. However, this much is true: Doctors are running scared. The number being arrested far exceeds those that run so called "pill mills" which of course make it difficult for those of us in need. Living like this makes one paranoid, so if that's what people want to call me, fine. But that pharmacist should have been tarred and feathered for his judgement of me, for what he did to me, and for what he is surely doing to others. And who knows if the insurance company broke their contract with him, as they promised me they would. I am not a crazed drug addict. I am a sick person at the end of her rope. This hysteria over using narcotics to treat pain has got to end. "When you have your health you have everything" becomes more than a familiar maxim murmured at Thanksgiving when it happens to you. And life does indeed turn on a dime. Not even
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