eJourneys Pain

Pain eJourneys 070913

My Daily Struggle with Pain

This expression of what I am feeling daily was put together without collaboration by a wonderful, amazing and talented woman EJourneys.  It goes to prove that there are others out there that deal with pain on a daily basis as I do, maybe not the same type of pain but pain none the less.  If you would like to read up on her story or comment on her wonderful work, I have added her Bio and blog site below.

EJourneys cares for her partner and blogs on Caregiving.com.  In addition to being active on the site, she contributes to the CareGifters anthologies (edited by Trish Hughes Kreis), which help raise funds for caregivers in need.
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Thank you for PickYourPain.org and for telling your story.  That took a lot of guts on a lot of levels, as did your perseverance through so much.

I feel immensely fortunate that my own journey of physical pain has been resolved.  I tell my story here:
http://hurricanecountry.blogspot.com/2005/08/pot-of-painlessness-at-end-of-rainbow.html

Don’t let your failures define you – Let them teach you.

                                                                                        – Barack Obama

How All This Pain Got Started. (Part 2 of 2)

So where I pretty much left off was after the accident maybe a few months.  For the next few years (3-4)  I went through physical therapy, acupuncture, acupressure, massage therapy, visited chiropractors, psychologists, psychiatrist, Ear Nose and Throat Doctors, GP’s, Orthopedic Specialists,  more psychiatrist from here up to South Lake Tahoe and down to San Francisco and even in Bakersfield, all to try and figure out where the pain was coming from.  By this time I had been on every narcotic pain med in the book, knots running up and down my back, been through numerous sessions of hydrocodone injections to relieve them from (16 to 39 injections per setting and these were weekly).  Was limited to the amount of driving I could do because the damage (found out later) was in my T12, L1-L5 and Sacrum, Coccyx area of my lower back.  Take a step, sit down, bend over, twist, make a movement, stand up, run, exercise you name an activity and those vertebra are where all the stress in your body goes and from there, its where all the pain radiates outward via nerves to the top of your hear, your fingers, toes, the spot on the back of your knees, your elbow, up your spine.  My issue was worse in that not only did it tear a large number of nerves apart (a lot smaller than the diameter of a human hair) some of the nerves grafted themselves onto existing live ones which continued sending my bodies pain signals to the brain.  The thought of how small a nerve is made the change of surgery impossible, onto plan B.  Its now 41/2 years post accident and the doctors have exhausted their thoughts and have called me in to have a follow up meeting.  Also the driver of the Toyota will be going to court in about five weeks, I’ll come back to that.

Here I am sitting in my doctors waiting office doing what, waiting, reading every pamphlet, poster on the wall, comparing acupressure points on the chart to my body and in walk my doctor, no paperwork and the look of, “Oh Well.”  He starts with the casual, how the weather out there today (It’s the middle of August 1998, Hello?)  and then he covers the,”Well you know we’ve tried everything we could so,” and he pauses, here I expecting good news and this doctor says (his words not mine) “All I can say is your going to have the pain for life and you’ll have to deal with it.”  WHAT!!  At this point I am on 15 different medications, three of them narcotics (Morphine and Fentanyl  are two of them), I can not stand or sit for more than 15-20 minutes, having mood swings because of the drugs just to name a few of the issues.   I stood up and told him that I was going off the medications slowly, all of them and will see what I can do and will go from there because the person I was becoming and the pain I was in was not doing it for me.  I can honestly say, I pulled it off, medication free (other than a lot of OTC pain meds) for 23 months and I could take it any more.  By this time I was with Trish my wonderful current wife, I went to my doctor who said sorry we now have a workers compensation group that you will need to see.  The doctor, I’ve been seeing for just about 51/2 years for this and they make me switch.  OK, this could be good, go in get a referral to a specialists elsewhere and bye, bye.  Ha Ha Ha Ha Ha, what was I thinking, new doctor, whole new set of tests to see if I need a referral.  So another 5-6 months of tests to finally get a referral to a local Pain Management Specialists.

At first I’m seeing two doctors at Dr. Snook & Dr. Stephens Pain Management, my first meeting is with Dr. Roger Stephens for a preliminary base line to see if he can even do anything for me.  I walk into the exam room and with in 10 minutes (yes 10 minutes, 600 seconds, etc.) well and some basic exam test, Dr. Stephens looks at me and says I can tell you (1) What the problem is (2) Prove it to you with one in/out procedure and (3) I can reduce your pain by at least 1/3, if the device works on your pain.  That’s key because it does not work on 100% of patients and why?  At that time they didn’t know why, today I have never followed up on it, all I know is it reduced by pain by at least 40-50%.   With just two in/out procedures the first to find out that again, the T12, L1-L5 and Sacrum, Coccyx area of my lower back had major nerve damage as well as several discs leaking spinal fluid onto my nerves and several of the discs were bulging.  The second procedure was to insert a Interracial Catheter Pump,  www.medtronic.com this unit is placed into my abdomen with a catheter running from the pump and into my spine (main pain site).  The pump then releases 24/7 a set amount of narcotic directly into my spine reducing my pain.  The benefits of this unit is, when meds are taken orally they go into your bloodstream and this is where you get the side effects from, aggression, anger, loopy, tired, weight gain/loss, hair loss, and this list can go on and on.  Now because the medicine is being place directly into my spine and not the bloodstream I don’t get those side effects yet all of the benefits of the pain relief.  I only have to , well now since they upgraded my pump to the newest model which is twice the size (40 ml) only have to visit the doctor (Stephens) every 8-10 weeks to have the unit refilled.  My daily medicine bank has been reduced from 15 different medications, 3 narcotics, with lots of side effects, to know I take 1 narcotic, a very mild dose, a pill for excessive sweating, one for constipation, an anti depressant, multivitamin and vitamin D that’s twice a day and that’s it.  Now only “10 pills a day total compared to Pre-Pump 32 a day”  I still see the doctor, no where near as much as before, since the pump which I nick named Fat Albert (FA) because of it size I have freedom in my life I was more or less confined to the house because of the narcotics, over the course of seven years I went from making in the high five figures, low six figures to the low $40’s, had to step down jobs three different times because I was not unwilling but totally unable to perform the duties provided or my medical appointments over rode my job duties.  I went from working out (165 lbs) 3-4 days a week with my brother to not being able to work out at all, I gained some weight (265 lbs), to where now I am 100% disabled with Low Back Chronic Pain and Depression.  I just recently broke the two hundred  pound mark.  Because it is very painful to workout It takes me quite a bit longer to lose weight than most, but I’m doing it and I will get down to my goal of 180.

Those people walking around with chronic pain may not be noticed, as for me I rock or do standing crunches to try and release the tension or pain in my back, you will see me stand up and sit down about every 15-20 minutes, in a car I can go about and hour then have to stop and stretch even though I’m still doing the stretches in the car.  Being in a car hurts, take riding in a roller coaster (x5) and that is what it feels like to me.  But chronic pain sufferers may not be noticeable and just because you can not see the injury (this goes for a large range of conditions not just chronic pain) does not mean we are not injured.  I say this because of the faces I sometimes get when I use the handicap parking, which I only do if there are a lot of them open or if I am hurting majorly.  So please don’t  judge someone just because you cant see whats going on with them, what the saying “walk a mile in my shoes.”  Most people would not want to, there are times I don’t want to.   In a “LONG” two page nut shell this is where my pain comes from and to let you know when reading my blogs I walk the walk and I talk pain.

“Pain without Laughter is just Painful”

– Richard Kreis

PYP Logo 2A

No truer words have been spoken such as these,

There is always something to be

grateful for even when life is hard

and times are tough.

-Madisyn Taylor, Daily OM

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