Category Archives: Personal Story

True stories of people who suffer from debilitating, chronic pain.

I Am the Pain

By: Jana Christian
2/18/03

I’m on a quest
To relieve my pain…
On my broken body,
It’s a terrible drain.

I’ve dabbled in drink..

And narcotics ó AND Zen.
But still I think
I’ll never work again.

They say that my neck
Is so battered and bruised.
But Hey, what the heck..
It has been so abused.

From one random act
To a Worker’s Comp claim.
There remains just one fact
ó I am out of the game.

And the pain starts to rip
At the base of my brain.
To my last fingertip..
And back up again.

Only sleepless nights
Are my constant friend.
GOD, this pain really bites.
Will it ever end?

My doc says ‘no’…
It will just get worse.
I’ve tried to and fro
To escape this curse.

“Holy Water”…
that’s what the doc said.
It’s all there is left to relieve my head.

I am the pain, I’ll say it again…
And my only refrain is..
I am the pain…it will always remain.

When I took my first steps I didn’t feel like Supergirl – it just felt natural

At the age of seven, Gemma Quinn was paralysed in a car crash. Doctors said she would never breath unaided let alone walk again. Now, 11 years later, she has proved them wrong. Elizabeth Day hears her astonishing recovery tale

The television screen flickers into life. A beautiful blonde teenager in a red, velour tracksuit stands shakily upright and takes a single step.

The lounge room erupts in shrieks of joy, screams of disbelief, the sound of clapping hands and muffled crying. In the middle of it all, the girl in the red tracksuit smiles – composed and separate from the mayhem that surrounds her. Then the screen goes fuzzy.

Gemma Quinn’s first step in more than a decade was captured on video as a 44th birthday present for her father.

“I wanted to do something special for my dad, because we have a really strong bond and he’s always been so supportive of me,” says Gemma. “By the end of it, everyone in the room was crying. There wasn’t a dry eye, but I didn’t cry. I always thought it would feel different when I walked, but it didn’t. It was instinctive. I didn’t even think about it. I just did it.”

“Just do it” is a catchphrase that encapsulates Gemma’s attitude to life. On the day we meet, the motto is emblazoned in loopy white writing across the grey sweatshirt she is wearing. The three words sum up the cast-iron determination that has characterised the years that have passed since Gemma was paralysed from the neck down in a car crash at the age of seven.

On June 6, 1992, Gemma was asleep in the back seat of a Rover Maestro driven by her father, Mike, on the way to a family holiday in North Wales. On a winding country road, the car was clipped by an overtaking lorry, ploughed into a wall and flipped over into a field.

The accident left her with a severed spinal cord and a categorical declaration from her doctors that she would never walk again. She would, they said, be confined to a wheelchair for the rest of her life, dependent on 24-hour care, unable even to breathe on her own.

“I never let that get me down,” she says with a smile. “I just got on with it.”

After nine months in hospital on a ventilator, Gemma had recovered the ability to breathe independently. The doctors, amazed by her determination and their own misdiagnosis, still insisted that she would never recover any movement from the neck down. But last November, after a decade of immobility, she began to regain sensation in her feet.

In all, it took 11 years of “getting on with it” before Gemma’s star turn last month in the video for her father. He broke down in tears when he watched it. Within a fortnight, Gemma could walk 20 paces, ride an exercise bike and kick a football.

Now she talks of having the metal rod in her back surgically removed, of regaining full movement and of her desire to travel to Kenya. The medical profession, slack-jawed in astonishment at her transformation so far, would be wise not to say “never” now.

…continue reading on
http://www.telegraph.co.uk…

CHRONIC PAIN FROM HELL ñ AND BEYOND!! (Part V)

Part V in My Never-Ending Quest to Get Medical Marijuana Legalized

Dear Doc Zombie:

Itís the day after my husbandís most recent brush with apathy at the hands of the UN-health system. Anyone following our story AND in Chronic Pain will relate, Iím sure.

My hubby, Don, had an MRI of his cervical spine (neck) and lumbar spine (lower back), which revealed ñ GET THIS..new ALERT. All discs in his spine are either ruptured, pressing on the nerve center of his spinal column, radiating pain down both arms and legs, to say nothing of the entire head and shouldersÖall but 5 discs in his entire spine are damaged and getting worse.

So we show up at the surgeonís office yesterday. We wait for over an hour in his bleak and boring (no music) dungeon of a waiting room, and then get ushered into the ante-chamber of bad news. The doc enters smiling and shaking his head as if to say, ìDon, you know that youíre screwed, of course. You shouldnít even be walking, never mind be alive and not-quite-kicking. Then he spends about 5 minutes, seems totally un-prepared for our visit, tells us he has to pull Donís MRIís and makes another appointment for next week!!! I was so pissed, I couldnít see straight. You mean, youíve had the results for 1 _ weeks and we show up, and you donít have them? After waiting over an hour in excruciating pain.?? Are you for real?

For the last month and a half, we have had to endure more torture waiting for approval of my husbandís recent treatment by the surgeon from the damn insurance company. Never mind a Pain Clinic. The doc DID prescribe something for pain (finally..first time in 3 years, and with ALL my husbandís documented injuries. It is inhumane), Tylenol with Codeine..Well, Whoopie-teee-aye-ohÖTry putting a band-aid on a heart attack, why donítcha? Then, to add insult to injury, he cuts him off after a weekís worth of codeine. What an empathetic creature.

Then he informs us that the local pain clinic doesnít accept the insurance (Workerís Comp, for Godís sake!!) my husband has. So where are we? Square ONE, thatís where. OH, the doc also said ìItís not my job to prescribe medications to anybody who needs itî, all this while Iím staring at a diploma that he got for ìPAIN MANAGEMENTî..What theÖ.????? I donít get it. OH, then he says he knows of docs in Massachusetts who prescribe Marinol (liquid THC) which is legal, but he wonít do it out of fear. Is this who I want operating on my hubby?

What a crock of crap. Who do you have to shake uncontrollably around here to get people to listen to reason? Iím the one watching my husband shuffle to the bathroom at 2:00 a.m. after hours of turning over and over in bed (like some hot dog on a grill at 7-Eleven), and dying of the pain, NEVER finding comfort, and being made to feel invisible by the health care system (and I use the term VERY loosely), a system that no more cares about my husband than they care about the elderly, the indigent or the homeless, never mind people who suffer Chronic Pain.

Who cares about Sleep Deprivation?? Who cares that you canít even lift a gallon of milk, because itís too damn heavy, or that by the time you wash your face and raise your arms for that long, youíre exhausted? Isnít this the Land of the Free and the Home of the Brave? But Bush procures billions to free Iraq, while my husband and I and millions of others donít have relief, not to mention the 43 million that have no health insurance. Itís an outrage, thatís what it is. DAMMIT!!

NO ONE CARES. Is there not a doctor in the house who can tell us how to get Marinol prescribed in a state where it IS LEGAL, because several of our Vietnam Vet friends have scripts for it. So whatís the deal? Maybe if my husband could get Marinol, all the extra money we have will NOT have to be spent on other medication and we can get necessities like furniture, health insurance, etc.

As it stands now, I have NO MEDICAL INSURANCE other than Medicare (thank God for that!!). I have neck and back surgeries coming up and suffer the tortures of the damned. It sure would be nice to live like a semi-normal person, but acceptance of reality is all there is.

The reality is this: Our conditions WILL DETERIORATE as we get older. Marijuana is our only source of pain relief. We go broke trying to buy it, because the ëpowers-that-beí are so damn greedy, theyíre all in ëití together. The damn drug companies, the politicians, the insurance companies, the DEA:..OH IT IS TOO HIDEOUS to talk about.

When will people see?? What can we do that Iím not already doing to speed the process along vis-‡-vis legalizing Medical Marijuana???

I welcome any feedback which could be of benefit to my husband and me. And now, my weary neck and hands retreat..more later, and thanks, as always, for listening. Hey, Doc..in case I donít get in touch before the holidays, you and your family have a fantastic Christmas and a peaceful and joyous holiday.

JC, Chronic Pain Sufferer

CHRONIC PAIN FROM HELL – Quatro – Fortuitous

ìAdventures in CHRONIC PAIN FROM HELLî
Still MORE Reasons for Legalizing Marijuana ñ NOW!
Dear Diary: Edition One
Author: Jana Christian

So living in chronic pain CAN be fun after all. Except for when you try to do things normal people do, and find your pain is now up to a level 10 on that stupid scale the doctors always use (how can you measure pain using an analogy like that??? Most of the time my pain and my husbandís is usually beyond that flimsy scale, but I digress)Ö.and youíre in a place that now feels like prison and CANíT GET HOME!! Iím talking about the casino at Foxwoods in Connecticut, my God Ödeliver us from there.

So itís been like 8 years since either of us has been there or ANY casino and NOW, they have 4 casinos which are about as easy to maneuver as a maze; I mean our heads were swimming with the teeming masses of people walking around with their heads up their collective buttsÖ.when youíre in Chronic Pain, sometimes you donít get out much and we were overwhelmed, to say the least.
Well, we immediately run over to the Wampum Club ( cuz when youíre broke, you look for cheap or free stuffÖI even bummed a Camel once to get me over the hump Öbut I digress too ).. and sign up, because of course, we have no real moneyÖ(just these 24 outdated chips circa 1993 which is the reason we came here in the FIRST place).

They explain all the benefits of owning one of these cards, and even give me a $5 food coupon because I happened to sign up in my birthday month. WOWWWWW! Iím somebody nowÖI have my Wampum Club card!

Next we head for the cage where they cash in the chips and all. But the chick at the window says ìwell, these chips went out with the cooling of the earthÖand have been recycled..we canít honor them, but if you take them to the cage in Casino 4, MAYBE they will.î AAAARRRRGGGHHHH@#$%&*@!!

Well, where the Hellís this magic cage? ..so we ask those helpful fellas in the brown garb that are supposed to be some kind of Indian guide, or otherÖIíd rather be lost in the Tundra with the 3 Stooges than some of these guysÖwe checked in with 3 of them and got 3 different sets of directions.

But you donít understandÖ!! weíre disabledÖhave driven 2 hours on fumes to get here just to use these discarded chips we found in the cellar ñ BURIED ñ while we were packing to moveÖwe canít walk much farther with blown discs in our necks and backs, but off we go to Casino 4Ö(mind you, by this time my husband is doing a fast burn)Öand when THAT happens, all thinking goes out the window and I become emotionally invisible and of no help, except to blabber out nonsense about what he should do (which he canít hear anyway), so I canít tell you how far we actually walked before my husband lost it and announcesÖîThatís ITÖwe are NOT leaving this place until we get some justiceÖyou mean to tell me the richest casino in the world can not offer me a lousy $24 after all the trouble we went to getting here? Are you NUTS!?îÖso off we go to another Wampum Club window so we can throw their cards in their faces along with the $5 coupon for foodÖ(I was not too thrilled with that, as my blood sugar was going down like a narc at a biker rally), but I agreed with my husband. And we were again explaining our woes to yet another employee named Linda, who used the brains God gave herÖcould see a situation about to go out of control, talked my husband downÖmade a few phone calls, and VOILAÖ

The casino manager appearsÖwalks us over to a cage, hands our chips over to the teller, gets us some real cash, and weíre setÖthat simple, and all because a few people had their eyes open while most others are members of the walking dead and donít even know it, bless their hearts. Watch out who you ask directions ofÖthey might be more lost than you..You could end up in Tel AvivÖfood for thought.

But it gets betterÖafter they finally DID honor our chips, we took about Ω hour to A) lose all the cash at the quarter slotsÖB) find another 3 ëguidesí to steer us off track on the way back to our misplaced car, which, by the way, was parked in the Handicap parking lot outside and they had directed us to the indoor garage (see we werenít even aware of the layout at Foxwoods, and felt like we had walked in circles for hours), the upshot of which is that thoí disabled and in excruciating pain, we walked almost the whole perimeter of that gigantic edifice called Foxwoods until I recognized our parking lot.

But by that time, we both needed EMS to resuscitate us, but I digress AGAIN. We made it homeÖtook two of everything, and called NO one in the morning. It was the most fun either of us has had in a LONG time.

I guess in the final analysis, we always were our own best guides to begin with. There were only 2 sets of footprints, but we know the truth. We were amazed at how little there is to miss ëout thereí.

Since the 9/11 massacre, we find peace in little things like just being able to wake up and cook a good breakfast, PAIN and all. I figure life is too short and fragile to sweat the small stuff, so I am reborn on this dayÖ.but enough about feelings.

Anyway dear diaryÖgotta work on my bookÖand get some shut-eye. I leave you with this little ditty, where there is medical weed, there is help inDEED.

angels_inc”

CHRONIC PAIN FROM HELL!! (Third Edition)

(Still MORE Reasons for Legalization of Medical Marijuana)

Author: Jana Christian
Midnight(insomnia)

I watched Real Time with Bill Maher last night, and once again, his comments on marijuana just blew me away!

One guest was Jesse Ventura, the former Governor ofMinnesota. What a breath of fresh air. They were going ’round and ’round on this issue of WHY the government can’t get its head out of its butt when it comes to legalization. Well, Jesse made the most sense when he said that the only reason they won’t legalize marijuana is because the drug companies with all their high-priced bogus man-made drugs (that half of us don’t need in the FIRST place) keep oiling the palms of the politicians to keep pot under wraps and portray it as the Devil, when we all know differently. Well, DUHHH. And you can grow a pot plant in your own backyard for nothing. And wouldn’t the bottom of the ‘war on drugs’ fall out then?

What an unforgivable waste of our money is this so-called war on drugs. Who won? NOBODY. Couldn’t this money be better-spent on feeding our own starving families in THIS country. And speaking of wars, Bush wants HOW much to keep the ball rolling inIraq?? But that’s a topic for the Smirking Chimp.com.

Meantime, in my attempt to educate the powers that be on Chronic Pain, this last Tuesday, my husband re-visited his surgeon. Hasn’t been to see him in 3 years. Three years ago, this surgeon had scheduled Don for surgery (see “Chronic Pain from Hell” (the Case for Medical Marijuana), but subsequently my husband canceled it after his doctor told him “If I were you, I wouldn’t let ME operate on you”, and gave him a 50-50 chance of paralysis.

Tuesday, x-rays were re-taken, and the doc just shook his head, and almost started crying. My husband’s neck looks like so many strands of spaghetti Ò no symmetry to it, but his lower spine has virtually disintegrated. The doctor shook his head and said “I can’t imagine how you’re still walking”. So he ordered new MRI’s on neck and lumbar spine and referred him to yet another Pain Clinic.

Two days later he gets a call from the doctor who informs him that his Workman’s Comp insurance company has gone bankrupt, and my hubby’s case has been placed in some pool of funds run by the state..oh GOD, what next?? Not another state agency. And here’s the good part. They won’t approve the MRI’s until my husband undergoes an IME (Independent Medical Exam), one of the state’s choosing..well, all I can say is AAAAAAAAAAAAAAAARRRRRGGGHHH@!#%$**&/. For God’s sake, he’s been out of work for 12 years and has undergone 12 surgeries. What do they want from him?

This means that the excruciating pain my husband’s in (the reason he went back to the surgeon in the first place), will just have to wait, while we wait for approval.

All of this is bad enough, but he has NO medication, and can’t GET any ’til he can get to the Pain Clinic. And to top it all off, we are out of marijuana, because we’re both on disability and can’t afford it. And WHY, because the damn government is corrupt and has no soul. And now I have to stop, because the crushed discs in my own neck are howling at the moon. More later.

Jana

PS Hey, Dr. Zombie!

PPS We did get some medication from a Guardian Angel friend of ours, so my hubby is sleeping like a baby. Beats Valium.

Partners in Pain

By: Jana Christian

I met my husband, Don, over the phone six and a half years ago. At the time, I was living with a woman who was an old friend of Don’s family. Don had called this woman and left several messages. I subsequently called him back to tell him that his friend was out of town. We talked and talked. I read him my poetry. We shared our histories. We cried. We ended up talking for four hours and made arrangements to meet for breakfast the next morning.

We met, we clicked..we meshed; we had so much in common ñ chief among those things was the fact that we had matching injuries. Ruptured discs at C5-6,C4-5, C3-4, C2-4, and L5-S1. Also, Carpal Tunnel Syndrome and lots of chronic pain to boot. A match made in Heaven.

We had found our soulmate; someone to identify with, and we married thirty-five days later. Call me crazy, but that’s the way it happened. We couldn’t have found each other soon enough. Both of us were in a self-destruct mode, due to years of chronic pain, and had pretty much given up on hope.

My husband went through six doctors and two unnecessary surgeries before I met him — only to finally find out he had the largest herniated disc at L5-S1 that the doc had ever seen. At first, this last doctor accused Don of just looking for pain killers until he finally did an MRI and apologized to him with tears in his eyes..told Don he couldn’t believe he was even walking with such a large ruptured disc. His first surgery was at age 27. Since then, it’s been a never-ending saga of repeated surgeries, accusatory doctors and staff in emergency rooms..on-going agonizing pain with no relief, and finally acceptance. People just can’t understand. It’s not their fault..too bad they can’t walk in our shoes.

It is SO debilitating living this existence of constant pain 24/7 with another person suffering the same fate. Unless you have it, there’s no clear-cut way of explaining the way it alters your life. But I’ll try.

When someone says they’re in pain, just because they happen to be coiffed and buffed on the outside, does NOT mean you could ever get in touch with the pain going on inside their bodies. I wish people would have more empathy, but how could anyone know, if they’ve never experienced it?

I’m exhausted from feeling as if I have to explain my every activity to people who tell me “Gee, you look fine”. I tell them “You wanna see my X-rays”? That usually does it. One day out of seven you just might get a spurt of actual energy (don’t blow it), if you’re lucky. You race around and try to do it ALL, because for five days, your back and upper body have been useless, and now you feel guilty for not doing enough around the house.

Last week my husband and I cleaned six small windows. With his neck and shoulders (two shoulder replacement surgeries, two discectomies in his neck, and eight other surgeries), and my neck and arms (two Carpal Tunnel release surgeries last year), we had to hang low for three days, we were so exhausted.

I’ve been studying chronic pain for quite a while. I got a kick out of discovering the 3 “s’s” of chronic pain. SADNESS, SLEEPLESSNESS, and SUFFERING. I say they should add another ‘s’ for SUICIDE. Not much to look forward to.

My husband kills me. He drags his body around and tries to always be productive. He pushes himself to the point that it makes me crazy because I worry about his health, and angry, because who has to listen to him groan the next day? You guessed it. But as he likes to say, “I’m not giving in to this”. He works like a dog on our yard and garden, practically drags his hind legs, but dammit, he gets it done. He’s been such an inspiration to me, when I want to give up.

For months when both my neck and back were ‘out’, I couldn’t sit, I couldn’t bend, NOR lie down and couldn’t sleep for five nights in a row sometimes and was totally losing it. I took to my bed and wanted never to emerge. If not for Don, I might still be there. Pity party’s over.

Meantime, now instead of sleeping and watching the world go by, I try to make my fingers do the talking, tho’ I can’t type for long periods or very fast (used to do 90 WPM), but doing it piecemeal is better than not at all. I’ve started yoga, because the chronic pain manuals tell you to stay in constant motion, and if I’m not in constant motion, I can only think and feel PAIN, so that’s a new behavior I’ve been doing.

We are blessed with a TENS (Transdermal Electro-Neuro Stimulator) which gives some minor temporary relief, but we maintain our constant pain with prayer and marijuana (WHEN or IF we can afford to buy it) PRIMARILY (see attached article written for Marijuana.com). We used to use alcohol for pain, only to produce more pain in other areas..so that’s out. Then there were narcotics from our doctors..Closest stuff to heroin you can get, and guess what?? No relief, so what’s the point? Gives you an idea as to the intensity of the pain.

We’ve been to physical therapy with maybe some temporary relief..done the pain clinics, been on the traction table, been through surgery, had injections, heat, pain rubs, Reiki, not to mention hypnosis, all with few, if any, results. My plan at first was to just give up if there’s no relief. But today, I know there are people out there with a MUCH worse situation than my own. I’m working on acceptance now..acceptance that my condition IS WHAT IT IS. And acceptance of the fact that I’m my own best doctor, that my pain WILL get worse, that surgery is not an option I’m willing to try on my neck just now after the nightmare stories I’ve heard (the worst ones from my husband), and acceptance that I’m not getting any younger. With these truths in mind, I’m trying to heal from the inside out starting with my attitude. All I have is today, so I better not waste a minute of it.

Today we’re watching the birds in our back yard. It’s an activity which produces much relaxation, and a positive attitude. I’ve been making them my focus, as it’s an activity I can say is very productive. I try to rise each morning with the best outlook I can muster. Some days are a wash. Other days, I actually love life. I’m practicing an attitude of gratitude as I battle my way to freedom from pain..

© All content on this page is property of Jana Christian.

CHRONIC PAIN FROM HELL TOO!!!

A Chronicle in Pain Management

We’re BACKKK!! My husband and I ñ just sittiní here listening to Barry Whiteís version of Basketball Jones, and laughing our butts off. And smoking a fat one for the first time in a long time..and it suddenly occurred to meÖ

Maybe if I document our lives ( we both live in chronic pain 24/7 from ruptured neck discs, multiple surgeries, Carpal Tunnel Syndrome and now migraine headachesÖsee ìChronic Pain From HELL!!î in Activism) ñ maybe if we share how we manage our pain with marijuana, we could make a difference on pathing a way to Washington with our ideas and findings, which weíve been documenting for months.

Iím speaking out for the legalization of Medical Marijuana for people in chronic pain..itís a harmless herb that God himself put on this Earth for our consumptionÖ who are we to say him no?? (lol)

As a Medical Assistant and EMT, and I know MUCH about anatomyÖnot to mention physiology, I guess it is all up to me. Weíve compared our vital signs (i.e. blood pressure, pulse, etc.) on days when we were drinking to manage our pain, versus those days when we were fortunate enough to have weedÖjust two days ago, my husbandís B.P. was 170/118 ñ VERY high..

Then yesterday we got our ëmedicineíÖtwo hours after smoking, my husbandís B.P. had dropped dramatically to 124/86ÖIt blew us awayÖthus this article.

Iíve got my answers. Now to get the Feds to listen, thatís another uphill battle. But I think Iím ready for itÖdespite my pain, itís time to move.

ìITíS CHRONIC PAIN, OR CHRONIC BROWNIESî

Weíve tried Percocet
But to my regret,
It DID NOT do the trick.

Iíve done Demerol,
But LISTEN, yíall
It made my eyes go thick.

And every narcotic known to man,
Can never do what good weed can.
But scripted drugs are A-ok?
Thoí they only take your life away?

Cigarettes can STILL be sold?
Even thoí the truth has been fortold.
Whoís high in the DEA I wonder.
The war on drugs has been a blunder.

And alcohol is legal too!!
Donít you cry for the harm that it can do?
I know Iíve cried one thousand tears..
I try to speak, but no one hears.

Listen folks, itís clear to me.
In pot, there is no misery.
Compared to all those medications,
MaryJaneís the ONLY indication.

Donít have to spend my day in pain,
Cuz pot re-routes my hurting brain.
I have more fun, more energy.
I thank the Lord that I can see.

OOOPS..there I go again with my rhyming old selfÖbut you get the picture, I hope..Suffice it to say, (gotta stop typing nowÖthe broken neck, donítcha knowÖ)..my husband and I have experimented with all the ëlegalí narcotics and with alcohol, and the damage done to ourselves and others in chronic pain that we know, should tell the taleÖ

Weíre speaking out and would like any advice on exactly who to contactÖprobably our state senator, but weíll be in touch..
Rhythmically Yours,

Jana Christian, Songwriter
ìANGELíS INKî
angelsink_jana@yahoo.com