Tag Archives: Jana

Living With Pain

Hi Everyone. I’m new to this wonderful site. Received an email from Vitali and have been encouraged and comforted to meet more folks and their loved ones trying to make a life IN SPITE of chronic pain.

I read Jana’s entries about her husbands experiences with Myelograms. I had my first AND LAST… in Oct.’03. It was terribly painful. I begged the doctor for even a little versed and he wouldn’t budge. WHY?!! The worst part was that the test only confirmed what we already knew WITHOUT the test!

Allow me to bore you for a moment, with a bit of MY STORY:
I was born with Spina Bifida which is a neuro-tube birth defect. But I was quite fortunate as a child and experienced much less complications than most children born with this. I walked, ran, attended school and was involved in everything from horseback riding to dirtbikes! I met the love of my life at the tender age of 16 and we were married. ANd then when I was 19, I defied the doctor’s predictions and had the first of our 3 daughters.

Unfortunately it was when I reached 30 that all “hell broke loose” 🙂 I began having increasing pain in both legs from top to bottom. I went from Dr. to Dr. and received diagnosis such as “depressed housewife”…. “just wanting drugs”….”minor arthritis”..etc. I’m gonna do my best to keep this really short, so I’ll skip ahead a few years now. AFter more than 3 yrs. of increasing pain with nothing more than Tylenol, Motrin, or if the doc was feeling REALLY generous… “Tylenol 3” (Yes, Jana… “bandaid on a heart attack”!)… finally through some miracle I met Dr. Molnar… the first Dr. to actually LISTEN to me! He NEVER treated me like a drug addict or a depressed housewife.He said “the first thing we have to do is to get you comfortable. THere’s no sense in you living another moment in pain with all of the potential treatments out there”. Back then we started with a low dose of Neurontin and some Oxycontin. ANd for the first time in years, I had some relief!! My family couldn’t belive the difference in my moods and attitudes. No more thoughts of suicide! I actually saw HOPE of actually “LIVING” life rather than just coasting along beside it! Next, Dr. M ordered a whole series of MRI’s and exrays and blood work.

Over the course of the next few years a lot would happen. In ’93 my left leg was amputated after more than 20 unsuccessful surgeries to scrape out a severe infection in the ankle bone (a.k.a.”osteomylitis”)… which the docs felt was a large source of my pain. The day after that surgery, the pathologist found that there was also a high level of Melanoma within the ankle. CANCER had been in there for God knows how long… and no one checked until Dr. M! A long stretch of rehab and treatments followed that and for a time, the pain level did improve. Bbut gradually it returned… and with a real vengeance! The Neurontin and Oxy. were like candy. So the Neurontin was increased tremendously and we added MS Contin, Baclofen, Wellbutrin and some M.S.I.R. (morphine sulphate immediate release). THe pain became bearable as long as I did not overdo it in any way. ANY slight change to my days can cause a terrible PAIN ATTACK which means 2-3 days in bed. A new series of MRI’s and exrays diagnosed more problems in ’99. As a result of the Spina Bifida, scar tissue formed around my spinal chord. This is called “Tethered Chord Syndrome”. Another common complication of Spina Bifida in adults is “Syringomyelia” which means that there are cysts…known as “Syrinx”… that form within the chord and fill with fluid. As they expand, they damage any nerves in their path…which then affects various body parts and functions. In Jan.’99 I had 2 surgeries on my lower back to attempt to decompress or release the tethered chord and to drain the cysts. The surgery was a disaster, infection almost killed me, and I spent 6 months in a rehab. facility. I did regain my ability to walk short distances there.

Now, it’s 2004. My spinal chord has “re-tethered” itself even worse than the first time. It is pulling my chord down much further into the spinal canal than it should be. I also have all new cysts within the chord as well as serious damage to the spine itself. 2 places in my neck and several in my lower spine are collapsing and crushing the chord. My pain level is barely managed with HIGH doses of 2 kinds of morphine as well as several other drugs. If my daily activities consist of anything more strenous than washing a few dishes or folding some laundry, then I have uncontrollable pain. Doctor’s in my hometown of Cincinnati told me there was NO ONE there that could offer me anything else. THey referred me to Cleveland Clinic and those docs there said they didn’t feel surgery was an option…wasn’t a high chance of success, but HIGH for complications, plus my risk of infection, etc. THey felt my only HOPE is intense rehab. to retain what mobility I have left for as long as I can. We recently moved to Phoenix where the Barrow Neurological Institute is located. I’m told that they are “The Best” there and so I have an upcoming appointment with them.

Depression is a constant battle these days. My life has changed SO drastically in the past few years! I’ve lost both my parents at the early age of 55, my health has declined, I lost a wonderful job because of it, I’m loosing my ability to walk, some of the use of my arms/hands, I have difficulty swallowing, I have CONSTANT urinary tract infections that make me very sick, AND my husband and I are both suffering from “Empty Nest Syndrome”!! So I believe that so much change can cause depression issues.

I can’t begin to tell you how much help it is to know there are others out there who “Get This”. I think you have to be a Chronic Pain Suffered OR love someone who is, in order to really grasp how all-consuming life with pain can be.

Sometimes for me, when the pain is really bad… it’s as if PAIN is all I can feel, hear, see, smell or taste. It’s like a very loud, constant SCREAM throughout my body. I know that my PAIN has had a negative impact on my ability to be a good mother, wife, daughter, sister and friend. THe PAIN rules your life. The PAIN makes the decisions of whether or not you go to the family picnic or the grocery store. The PAIN decides whether or not you take your kids to the amusement park or go to their softball game. The PAIN decides if you will sleep tonight or not… and for me, my pain even affects my appetite and ability to eat.

I AM TRYING to learn to rise above the pain… to take back the control in my life. I don’t like depending on pain meds. to keep me mobile… but if that’s what it takes to keep from just giving up and being in bed all the time, then I’ll do it. I’ve recently been thinking about the fact that PAIN “stold” a large portion of my life from me. Now, I have the chance for a whole new start… a new city, my girls have families of their own and live in 3 states, and for the first time in 23 yrs. my husband and I are ‘on our own” again. We should enjoy this time in our lives. My husband DESERVES to enjoy this time in his life!

So I’m trying some things I’ve never done before…some things I’ve wanted to do for years but didn’t have the courage. I’m going to be getting involved in a rehab. program that involves some real dedication and exercise in order to rebuild some of my muscles that have become so weak. I’m getting involved in some community projects. AND…something just FOR ME… I have (finally) found the nerve to enroll in some writing and literature courses. I’ve been writing since I was a child, I’ve always loved writing AND reading! I’ve been working on a few manuscripts for a few years and I have several other projects in mind. I’m even going to be taking an Art class!

All of these things are ALL NEW for me.Pain has tried lately to convince me that I’m fooling myself if I think I can “pull this off”… I’m not “able” to do these things. But that makes me more determined to PROVE PAIN WRONG!!

Thanks SO much to those of you who have “stuck it out” and actually read this thing to the end! ;o) It has been a bit of “therapy” for me to share this with you.

Thanks to all of you who contribute to make this site a “safe haven” to pain sufferers everywhere.
Blessings,

Denice

Living With Pain

Hi Everyone. I’m new to this wonderful site. Received an email from Vitali and have been encouraged and comforted to meet more folks and their loved ones trying to make a life IN SPITE of chronic pain.

I read Jana’s entries about her husbands experiences with Myelograms. I had my first AND LAST… in Oct.’03. It was terribly painful. I begged the doctor for even a little versed and he wouldn’t budge. WHY?!! The worst part was that the test only confirmed what we already knew WITHOUT the test!

Allow me to bore you for a moment, with a bit of MY STORY:
I was born with Spina Bifida which is a neuro-tube birth defect. But I was quite fortunate as a child and experienced much less complications than most children born with this. I walked, ran, attended school and was involved in everything from horseback riding to dirtbikes! I met the love of my life at the tender age of 16 and we were married. ANd then when I was 19, I defied the doctor’s predictions and had the first of our 3 daughters.

Unfortunately it was when I reached 30 that all “hell broke loose” 🙂 I began having increasing pain in both legs from top to bottom. I went from Dr. to Dr. and received diagnosis such as “depressed housewife”…. “just wanting drugs”….”minor arthritis”..etc. I’m gonna do my best to keep this really short, so I’ll skip ahead a few years now. AFter more than 3 yrs. of increasing pain with nothing more than Tylenol, Motrin, or if the doc was feeling REALLY generous… “Tylenol 3” (Yes, Jana… “bandaid on a heart attack”!)… finally through some miracle I met Dr. Molnar… the first Dr. to actually LISTEN to me! He NEVER treated me like a drug addict or a depressed housewife.He said “the first thing we have to do is to get you comfortable. THere’s no sense in you living another moment in pain with all of the potential treatments out there”. Back then we started with a low dose of Neurontin and some Oxycontin. ANd for the first time in years, I had some relief!! My family couldn’t belive the difference in my moods and attitudes. No more thoughts of suicide! I actually saw HOPE of actually “LIVING” life rather than just coasting along beside it! Next, Dr. M ordered a whole series of MRI’s and exrays and blood work.

Over the course of the next few years a lot would happen. In ’93 my left leg was amputated after more than 20 unsuccessful surgeries to scrape out a severe infection in the ankle bone (a.k.a.”osteomylitis”)… which the docs felt was a large source of my pain. The day after that surgery, the pathologist found that there was also a high level of Melanoma within the ankle. CANCER had been in there for God knows how long… and no one checked until Dr. M! A long stretch of rehab and treatments followed that and for a time, the pain level did improve. Bbut gradually it returned… and with a real vengeance! The Neurontin and Oxy. were like candy. So the Neurontin was increased tremendously and we added MS Contin, Baclofen, Wellbutrin and some M.S.I.R. (morphine sulphate immediate release). THe pain became bearable as long as I did not overdo it in any way. ANY slight change to my days can cause a terrible PAIN ATTACK which means 2-3 days in bed. A new series of MRI’s and exrays diagnosed more problems in ’99. As a result of the Spina Bifida, scar tissue formed around my spinal chord. This is called “Tethered Chord Syndrome”. Another common complication of Spina Bifida in adults is “Syringomyelia” which means that there are cysts…known as “Syrinx”… that form within the chord and fill with fluid. As they expand, they damage any nerves in their path…which then affects various body parts and functions. In Jan.’99 I had 2 surgeries on my lower back to attempt to decompress or release the tethered chord and to drain the cysts. The surgery was a disaster, infection almost killed me, and I spent 6 months in a rehab. facility. I did regain my ability to walk short distances there.

Now, it’s 2004. My spinal chord has “re-tethered” itself even worse than the first time. It is pulling my chord down much further into the spinal canal than it should be. I also have all new cysts within the chord as well as serious damage to the spine itself. 2 places in my neck and several in my lower spine are collapsing and crushing the chord. My pain level is barely managed with HIGH doses of 2 kinds of morphine as well as several other drugs. If my daily activities consist of anything more strenous than washing a few dishes or folding some laundry, then I have uncontrollable pain. Doctor’s in my hometown of Cincinnati told me there was NO ONE there that could offer me anything else. THey referred me to Cleveland Clinic and those docs there said they didn’t feel surgery was an option…wasn’t a high chance of success, but HIGH for complications, plus my risk of infection, etc. THey felt my only HOPE is intense rehab. to retain what mobility I have left for as long as I can. We recently moved to Phoenix where the Barrow Neurological Institute is located. I’m told that they are “The Best” there and so I have an upcoming appointment with them.

Depression is a constant battle these days. My life has changed SO drastically in the past few years! I’ve lost both my parents at the early age of 55, my health has declined, I lost a wonderful job because of it, I’m loosing my ability to walk, some of the use of my arms/hands, I have difficulty swallowing, I have CONSTANT urinary tract infections that make me very sick, AND my husband and I are both suffering from “Empty Nest Syndrome”!! So I believe that so much change can cause depression issues.

I can’t begin to tell you how much help it is to know there are others out there who “Get This”. I think you have to be a Chronic Pain Suffered OR love someone who is, in order to really grasp how all-consuming life with pain can be.

Sometimes for me, when the pain is really bad… it’s as if PAIN is all I can feel, hear, see, smell or taste. It’s like a very loud, constant SCREAM throughout my body. I know that my PAIN has had a negative impact on my ability to be a good mother, wife, daughter, sister and friend. THe PAIN rules your life. The PAIN makes the decisions of whether or not you go to the family picnic or the grocery store. The PAIN decides whether or not you take your kids to the amusement park or go to their softball game. The PAIN decides if you will sleep tonight or not… and for me, my pain even affects my appetite and ability to eat.

I AM TRYING to learn to rise above the pain… to take back the control in my life. I don’t like depending on pain meds. to keep me mobile… but if that’s what it takes to keep from just giving up and being in bed all the time, then I’ll do it. I’ve recently been thinking about the fact that PAIN “stold” a large portion of my life from me. Now, I have the chance for a whole new start… a new city, my girls have families of their own and live in 3 states, and for the first time in 23 yrs. my husband and I are ‘on our own” again. We should enjoy this time in our lives. My husband DESERVES to enjoy this time in his life!

So I’m trying some things I’ve never done before…some things I’ve wanted to do for years but didn’t have the courage. I’m going to be getting involved in a rehab. program that involves some real dedication and exercise in order to rebuild some of my muscles that have become so weak. I’m getting involved in some community projects. AND…something just FOR ME… I have (finally) found the nerve to enroll in some writing and literature courses. I’ve been writing since I was a child, I’ve always loved writing AND reading! I’ve been working on a few manuscripts for a few years and I have several other projects in mind. I’m even going to be taking an Art class!

All of these things are ALL NEW for me.Pain has tried lately to convince me that I’m fooling myself if I think I can “pull this off”… I’m not “able” to do these things. But that makes me more determined to PROVE PAIN WRONG!!

Thanks SO much to those of you who have “stuck it out” and actually read this thing to the end! ;o) It has been a bit of “therapy” for me to share this with you.

Thanks to all of you who contribute to make this site a “safe haven” to pain sufferers everywhere.
Blessings,

Denice

CHRONIC PAIN FROM HELL (6th Entry in Pain Chronicles)

Author: Jana Christian

My husband and I were just sitting here discussing his worsening pain. Just saw the doc today who has FINALLY evaluated Donís latest MRI of his neck and lumbar spine. To quote the doctor, ìDon, I donít know if I can operate or help you, as you donít respond very well to surgeryî. Then he suggested another myelogram. My husband, Don, burst into tears.

Well, see ìChronic Pain from HELL!!î RE: the torture my hubby suffered during his last myelogram three years ago. My husband told his doc, ìthree years ago, I had to be held down by three bouncers the size of refrigerators in order for you to do the test because my spine was so full of scar tissue you couldnít even find a space to stick the needle. Your report said you sedated me. I was NOT sedated, no pill, no needle was given to me: not then, not EVER. At the time you told me youíd never subject me to another myelogram. And now today you donít even remember the procedure??! What theÖ?#@%^$$î.

Don was also told his WorkmanĂ­s Comp insurance company (the very lovely state-run pool my husbandĂ­s case has been dumped into, but I digress into yet another scream-fest) wonĂ­t approve him to go to a pain clinic. HeĂ­s been turned down about three times. I think his rights are being violated in a big way. Duhhh.

The doctor then referred him to a neurosurgeon for a 2nd opinion. So now MORE waiting. More weeks flying by without anything but marijuana (and not much of that, due to the fact weĂ­re both on a fixed income).

The doc then gave Don a script for 30 Tylenol 3 ñ FOR A WEEK!! (well, WHOOOOP, WHOOOP, Boring Alert ñ why not put a bandaid on a heart attack.

I swear, is there ANYONE out there with the brains God gave them who can help my husband find relief from his agonizing pain? Anyone out there with any compassion. Does NO ONE care? IĂ­m beginning to wonder.

You know how obnoxious a person is when they drink alcohol to excess, and theyĂ­re belligerent as Hell? My husband snaps at the drop of a hat without alcohol because of the pain. HeĂ­s on the edge day and night. If the phone should ring, I pity the poor fool on the other end. If wakened from a half-assed sleep, he will startle immediately and snap his neck sitting up, so pumped up with adrenalin as he is with this pain.

WeĂ­re beginning to wonder if the public is safe from such a person, whoĂ­s been kicked to the curb by the health care (and I use the term loosely) system, has no access to pain medication, has to threaten his doc that heĂ­s going out to get street drugs just to get a script for codeine. Are you crazy? Are you nuts? Guess what George? You guessed it, the war on drugs is a dead pink elephant in the eye of progress. I can say no more.

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 Ăł 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
Ăł 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.

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 husbandĂ­s is usually beyond that flimsy scale, but I digress)Ă–.and youĂ­re in a place that now feels like prison and CANĂ­T GET HOME!! IĂ­m talking about the casino at Foxwoods in Connecticut, my God Ă–deliver us from there.

So itĂ­s 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 buttsĂ–.when youĂ­re in Chronic Pain, sometimes you donĂ­t get out much and we were overwhelmed, to say the least.
Well, we immediately run over to the Wampum Club ( cuz when youĂ­re broke, you look for cheap or free stuffĂ–I even bummed a Camel once to get me over the hump Ă–but I digress too ).. and sign up, because of course, we have no real moneyĂ–(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! IĂ­m somebody nowĂ–I 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 HellĂ­s this magic cage? ..so we ask those helpful fellas in the brown garb that are supposed to be some kind of Indian guide, or otherĂ–IĂ­d rather be lost in the Tundra with the 3 Stooges than some of these guysĂ–we 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 appearsĂ–walks us over to a cage, hands our chips over to the teller, gets us some real cash, and weĂ­re setĂ–that simple, and all because a few people had their eyes open while most others are members of the walking dead and donĂ­t even know it, bless their hearts. Watch out who you ask directions ofĂ–they might be more lost than you..You could end up in Tel AvivĂ–food 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 homeĂ–took 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 Ă«out thereĂ­.

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 dayĂ–.but enough about feelings.

Anyway dear diaryĂ–gotta work on my bookĂ–and 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 Ă’ 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..

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