Greetings!

Good Morning  Fellow Pain People!

 

I do not know any of you nor you me. Yet.  At this hour I'm just too played out to do you justice with a proper introduction.  So, for now, at this black dead hour of 3am, suffice it to say that I'm a train wreck from the Great Lakes region.  I have several non-malignant terminal diseases.  Significant challenges.  But nothing special.  There is so much suffering, mine is just another star in the constellation.

 

I hope to meet and greet and learn and offer support wherever possible.  With a little luck, you'll find use for this old mule... ...

 

Please allow me to wish all those in pain moments of rest and glimpses of laughter.  Until later.....

 

Warm Regards,

 

Reluctant Survivor

Hi there, Scared-for-life...

 

Many thanks for responding to my first post!  I should note, before my metabolocially altered brain immediately moves on to something else, that I am operating with a (barely) cobbled together computer system.  Long story.  Anyway, if I should suddenly stop posting or replying, please assume my "system" has crashed, again....

 

My "story" is complex and convoluted, but began, like yours Scared-for-life, with several spinal injuries. Football provided my first neck injury.  Was told to quit playing.  Played anyway.  Idiot.  Not long thereafter I was thrown from the backseat and out into the woods during a particularly violent automobile accident.  More neck injuries, among others.  Had a C5/C6 cervical fusion which failed, allegedly due to the donor bone used for the allograft.  The discs above and below fusion herniated.  During a weight lifting accident, I ruptured the notorious L4/L5 disc.  Surgery was recommended, but I opted for the 'consevative', so-called medical management approach.

 

Like most CP'ers, I was prescribed every NSAID know to mankind.  Including Vioxx, Bextra, Celebrex and others.  The Bextra actually did help!  Also subjected to physical therapy of many varieties.  Even good old traction with the hanging weights!  I was not exposed, due primarily to my rural location and insurance restrictions, to an actual "pain management specialist" until around 2003.  This after suffering for nearly 20 years.  Then, as we all know, I had to be run through all the stuff that did not work the first time.  Just CYA for me and the doc, mostly the doc.  I was finally titrated up to a dose of 80 mg of methadone per day.  No BT meds.  This and a few other meds seemed to increase my mobility and quality of life.  I remained on the methadone without an increase for 3 years.

 

Meanwhile, my body was introducing additional new issues.  Disturbing symptoms I'd never experienced before;  passing out and going down like a bag of cement, breaking bones and injuring both knees;  lower extremity edema, chest pain, crushing fatigue, among other unpleasant stuff.  My doc at the time was content to have his nurse practitioner provide all medical care.  I had only Medicaid then and my options were limited.  Also, she appeared to be doing a decent job!  A very cranky cardiologist ordered a heart cath which was mostly unremarkable, except for slightly elevated right heart pressures. This later proved to foretell an awful outcome.  I was rx'd a heart med, diuretics, etc.  But nothing changed.  I was getting worse.

 

Despite the risks, an ortho surgeon agreed to repair my left knee in 2004.  The arthro went well.  I felt so good I went grocery shopping with my daughter the very same night!!  One problem solved, or so I believed.

 

Then, in May of 2006, the major, lethal meltdown occured.  I was 'ambushed' by what was termed a "massive, bi-lateral pulmonary embolism".  A horrific experience.  A near death episode, lingering between the two worlds for two weeks.  Projectile bloody noses, hideous memories of feeling as if I was drowning over and over, indescribable pain...snapshots, though, as to this day the period between 5/06 and NOW remains quite foggy.  Thank God!  Many memories have come into clearer focus, but I'm still working on filling in the void.  Hypoxia caused by lack of O2 to my brain resulted in some minor damage and a generalized frontal seizure disorder.  Oh, boy!! 

 

The collateral damage from the PE was extensive, permanent, incurable and life-threatening.  And life changing, no, shattering is much closer to the truth.  Massive lung damage produced Pulmonary Hypertension (secondary), the renegade blood clots pitched tents in both legs, causing deep vein thrombosis, and other vascular and metabolic issues it's just too depressing to discuss.  Self pity.  I know, a poor perspective, and not characterological for me.  I underwent 8 heart cath surgeries and surgery to implant an IVC filter to hopefully stop aboout 80% of blood clots heading for my heart and lungs.  I actually was able to view a large clot in my right ventricle and atrium on the monitor during an angiogram.  What a terrifying sight.  I avoided the monitor in the future.  Strangely, I could not describe for you any great details about the SICU where I spent too much time?!?  Not even the color of the walls.

 

It's rather embarrassing to admit that my vascular surgeon and other docs at the university hospital where I'd been transfered referred to me as "the miracle man".  They had not treated anyone else (yet) who'd survived a pulmonary embolism of such massive porportions.  I still have not completely absorbed those ramifications.  My pulmonologist stated matter-of-factly that I could expect 2 to 5 years survival.  I spend much of my time working to remain alive, and so far, it's succeeded for 2 years!  The PH can drop ya in a 'heartbeat' and left me with about 35% of my lung function.  You can imagine the cardio-pulmonary limitations combined with the spinal issues.  Challenging.  I had aways been physically active, before, in the other life, where I was also employed as a licensed professional counselor.  Now, lost, mostly.  Too alone with those thoughts we all know too well.  The darkness.

 

I am genuinely sorry for the length of this post and for the vision of anyone who read it through... It helps me emensely to think and write this 'story' within a forum of folks who can understand and are highly unlikely to be judgemental.  It's very difficult to find such a place.  So, please accept my gratitude for your patience, and I will look forward to any replies.  I welcome your input!!  I'll start trying to locate areas where I might offer a boost up to another CP'er!

 

So many potentially disaterous medical issues have occured over the past two years that I'm just plain burned out.  A biopsy surgery to rule out lymphoma that went terriby bad along with 3 MRSA infections.  Most since last summer.  Whew... !!  Now, bone marrow problems connected to a badly damaged right knee.  I'm hoping that what comes next includes meeting many new kindred spirits here!  That would beat the living crap out of another MRI!!

 

Warmest Regards,

 

Reluctant Survivor

 

PS...Scared-For-Life...I've been started on Kadian too, how has it affected you?  I think I preferred the methadone.  Fewer side-effects.

Post Edited (karmacrunch) : 7/20/2008 4:58:44 PM (GMT-6)

Wow hun sounds like you have been through the mill and back, so to speak. How horrible that you have had to suffer through this, but you are alike to all of us on this board with the pain that you suffer through day to day and that makes all of us kindred spirits so to speak. Right and left knees have been through the mill on my body and now I am dealing with arthritis in both knees which is extremely painful when I kneel down. Cannot bend because of the back and feel as though my body is totally rejecting me. Two level fusion in 2000 left me feeling quite good for about two years and when I woke up from the surgery I felt that finally the pain was gone and I could go on with my life. But in 2002 I was out working in my strawberry bed and I bent to pull a weed from my ever growing and glorious budding strawberry plants when what do ya know a spasm of pain sheered down my legs and caused L3-L4 to bulge. Went back in for surgery and the Neuro did a fusion on L4-L3, then proceeded to tell me that I only have two more discs to go before the lower back is completely fused. Of course I loved my Neuro and would have done anything he asked me to do as he did a fine job with the first two fusions and had an excellent bedside manner that put me to ease quite fantastically.

In the next year I was doing better until I went back to work on the advice of Voc Rehab who thought that I was completely ready to go back to work. That was in May of 2003 and within two weeks I had horrible leg pain return to both legs and called my neuro who suggested I come back in for a discogram to see where the pain lay. He discovered that L3-L4 screws had unfastened themselves and that the fusion I did not take. So again went in for surgery frontally this time to repair the screw being loose and to place new hardware and cadaver bone in the back. When I woke up from surgery four hours later I had no relief from the leg pain and it was horrible. So with that I took up the call that I had no relief from the back pain and my Neuro refered me to a PS in Cheyenne which is 8 hours away from me. Since my neuro was now stating that I was in CP territory and that there was nothing he could do surgically to relieve my pain it was now time to start the chronic pain control with medications at the end of 2003 and I found a wonderful CPS in Billings MT that helped my adjust to life with CP. But 2 years ago she left the office and they switched me to another PS that was wonderful named Dr. Cohen. I absolutely loved this guy as a doc and he was quite symptomatic to my pain.

Last year Dr Cohan took another position back east and has since left Billings. So again I was juggled to another doc, who has been quite pleasant with my needs and has been sympathetic as well. His name is Dr. Shaubacker and has been a very good doc refilling all of my meds on time and happy to answer all of my questions with reasonable answers. Last week on my reg visit, I explained to him that my B/T pain was not being controlled by the Percocet and he thought that we needed to explore the option of a Mylogram to see if there is a nerve being pinched or what if anything they can do to make my pain better. So with that I am being scheduled for a Mylogram and I have already done x-rays to see if something is going on that can be fixed. If not.....I will be a candidate for a pain pump.

The Kadian is working well, but I have been in a fog because of it and I hate trying to swallow the capsules.

Hello, Ry!  Thanks for the welcome and invitations.  Hopefully this machine will permit my participation!  As I indicated, Kadian has not been an effective 24 hr drug for me.  And my PS is so paranoid that any BT meds are erratic, ridiculous and mostly not even worth requesting.  If my transportation was not so limited, I know where to find experienced PS docs.  I'd like to see Dr Michael Whitworth in Columbus, Indiana.  He's supposed to be one of the very best.  Probably 8 hours from me.  Too bad hitchhiking is impractable these days!

 

Scared-For-Life...Wow...wouldn't want to be behind you at the medal detector...!  And another myelogram.  Why not a newer MRI or CTA?  Why do they still insist on invasive procedures?  I've had 5 or 6 myelograms.  Several were very unpleseant.  Spinal fluid leaks, huge headaches...yuck!  Are they pretty smooth for you?  Must have a very good neuro.  The following is true, I swear...the neuro who did my cervical fusion ended up in federal prison.  Seems he had a penchant for Peruvian marching dust and even visited South America to purchase his stash.  He got caught.  Hasn't been back since.  Hmm...

 

If I may ask, are you still working?  I finally received SSD in 2004, after 2 years of constant contact with the agency.  Due to my younger age and bachelor's degree, it was very hard, and I ended up at an administrative law hearing in Cleveland, Oh with my daughter.  It lasted 10 minutes and I won.  Amazing since there was no attorney.  A rare lucky day!!  But I miss working more than almost anything else I've lost.

 

I don't experience too much fog from the Kadian.  Not sure I'd notice unless it was pronounced, since I tend to be somewhat foggy as a rule these days.  I also take Lyrica for neuropathy and seizure control and it works fairly well.  My overall health would preclude a pain pump, but how do you feel about that option?

 

Like you, I have spinal cord compression and stenosis and multiple levels of disease.  It affects my gait, and, of course there's the always lurking pain beast.  No surgeon would attempt to fix me now.  Too risky.

 

I can sure sympathise with your changing doc problems!  My PCP left at the end of Feb. this year, and I have yet to find a replacement.  She was an excellent, young internal medicine doc and she got me through some tough situations.  I liked and respected her and miss her enormously!!  I've been turned away due to the "complexity" of my medical issues.  Too much could go wrong, too much to remember and juggle, too much liability...  Not sure who to call next.  I'm starting to become shell shy.

 

Godspeed for your myelogram!

 

Regards,

 

RS

Thak you, PaLady, for your kind welcome!  I've been bumped off sites after clicking the submit button...after wading through the bulk of my "story",  lost in cyberspace.  I may have been heard to utter an expletive or two...or thee...

 

Hope I did not disclose too much!  I tend to take advantage of opportunities to share and thus learn from others.  Perhaps I need to recognize when enough is enoungh....??

 

I'll look forward to your "longer" post if or when it appears!  Meanwhile, have a great Sunday night!

 

Regards,

 

RS

Hey RS: you been living in hell to. Everyday i wonder when enough is enough. All my problems are from failed cervical, hip and back surgeries and in my case enough would be enough should i ever have internal problems. I truly admire Your stamina and i am told that my being able to walk and talk is a miracle. Also i admire Your writing skills hopefully you can solve Your computer problems. Last computer problem i had i tried beating my computer with a hammer and sorry it did not do the trick so i had to buy another I look forward to hearing from You and welcome

Scarred for life and karamacrunch...boy, and I thought *I* had troubles! My back troubles began in 1970 when I fell off a cliff about 20 miles west of Loveland, CO (scarred, I lived in Ft. Collins and Loveland for many years...my folks lived just outside Billings (outside of Roundup) for many years, and I made that journey down from Billings to Ft. Collins in 1999...my guess ...well, I won't guess, 'cause it'll probably be too accurate :)

For 25 years, things were pretty stable, then the pain begain...a few rear-end collisions, a few falls, aging, etc., and it took it's toll. By 1995, when I ended up in the beautiful state of MI (CO's prettier, though!) I was happy to learn of something called 222's - you can buy 'em just over the border in Canada - they're tylenol with codiene (8 mg/tab). Unfortunately, I was eating those like candy - the pain got worse. Finally, after surgery for breast cancer (in remission 7 years) I was given vicoden - wow...pain relief without nausea! I mentioned this to my doc, and she began rx'ing them regularly. Then...a hernia. To keep the pain at bay until surgery could be done, she put me on Fentanyl (duragesic). Sudden pain relief! But I had to escalate the dose to 100 mics eventually.

Then...in 2004, I began to have problems with pneumonias, multiple! (8 in 8 months, plus 5 blood transfusions). Yep, I'd blown my lungs with smoking all those years, and I'm now paying the piper, as they say. The merry go round of pneumonias started again - in 2007, why, we don't know. Aspirant pneumonia? Bacterial? hmmm...maybe I should get on one of those medical mystery shows :) At any rate, this 2004-2005 problem put my search for pain relief on the back burner...until late 2006.

Finally, I had a year 'off' from the pneumonias, and started seeking treatment again for pain control with less narcotics. I tried facet injections and so on - no go. Surgery was iffy due to my lung condition and severe scoliosis (yep, my back looks like the Front Range - Scarred will get this reference!), so my doc referred me to a pain clinic in the fall of 2007, and I'd done some research on the medtronic pain pump (morphine). They agreed to insert it, and it was...february of this year. (lower case = too many years of unix!). Fortunately, it was inserted before I got on another 'merry go round' of pneumonias - late February through July - 5 episodes, 1 blood transfusion - my hemoglobin tends to go on strike when I get sick - they call it 'anemia of chronic illness' ::sigh::

I won't even LIST my meds - I'm a regular walking, talking pharmacy! They do include, however, morphine, 8 mg via pump over a 24 hour period (this in comparison to almost 600 mg. oral morphine equivalent before pump) and dilaudid 4 mg (filled script in April, didn't need to fill again until July, though dosage was only for one month - wonderful!, except I forgot it expired in 60 days, so went without for a week! Managed with some vicoden I had floating around). The rest are heart, and COPD meds.

Pain is very much reduced. I still get sciatica like pain. Due to my COPD, it's been difficult for me to get exercise, and due to the multiple pneumonias, it's hard to quantify strength, due to the fact that each bout knocks me out for a while, and when you get them back to back...you don't have time to bounce back; but I'm going to stiff it out and go to the malls at least once/week to walk. I have a rolling walker, which helps support me/back when the back starts hurting, so I can go a longer time. Since I got the walker, I've been to our local hoedown (a country/western celebration), lobby day at the capitol, and various other places I could never have managed before without the walker. I get the pump refilled in September, and might get a tweak sooner...I'm trying to keep a mental (should write it down, no?) diary of when the pain is most. But...the breakthrough seems to be working, too, so might not.

Hi grannymac, good to 'meet' you, and thanks for inroducing yourself.  We have in common the duel demons of chronic pain and cardio-pulmonary issues.  And what a pair they make!  Too tired and breathless to get started and in too much pain to make that first move...  The first attempts to mobilize in the morning are usually the most difficult for me...fortunately, the kitchen and the miserable meds are only a small stagger away!

 

I, too, was dignosed with COPD before the pulmonary embolism occured.  It was mostly in the mild stages at that time (around 2003).  An inhaler and hearts meds were effective.  Also like you, I self-inflicted much lung damage with off and on (mostly on!) smoking since I was 21.  However, the docs who contributed to my surviving the PE indicated that my lungs, while certainly not improved from smoking, were still in pretty good shape as a result of being very physically active all my life.  May have helped me to ward off my demise, grannymac, so keep up that walking!  Good for you for getting out and getting it done!  I use (and hate) a cane for my walks outdoors.  Gives me the opposite feeling of how it was, during many years of hiking, of picking up a good walking stick.

 

Sounds like you have some good docs in MI!  Heck, I'm less that an hour from Monroe,  so perhaps I should move north.  Also, I've always wanted to see the wilderness areas of the UP.  I lived 12 years in Yakima, WA, with Mt Ranier out my bedroom window, so the geography in Ohio was initially rather shocking!  I've found many ourdoor treasures here, too, and used to visit and hike around them regulalrly.   Another activity I miss but am determined to at least attempt once again.  I'll use the dam*&# cane AND a good walking stick!

 

I was recently (last week) rx'd oxygen for use at night.  Their erratic instruments indicated my "pulseox" dipped to 77% during the night.  A bad place.  Intubation if you were in an ER with that level!  I'm waiting to learn if it helps.  If you need or want to use a pain rating scale to meaure your daily status, there are many you can print off the net.  I am required to use one, the usual 1 to 10 scale, but there are many others.  Most better.  Just visit the American Pain Society or do a search, you'll find one you like!!  Good luck!

 

Best wishes for improved pain relief and reduction of the cardio-pulmonary symptoms!!  Based on your post, I'd venture you wouldn't allow either issue to push your stop button!!

 

Warm Regards,

 

Reluctant Survivor

Thank you so much for your kind words Karma. Yeah its quite painful watching your own father deal with these issues and I have tried to be as supportive as I can over the years. But it is so hard watching him wither away to practically nothing. My brother's evil side is now rearing its ugly head. He's now telling me that everything that dad has is going to him, but that my sis and I will get little trinkets in memory of him. I really do not want to fight over my father's things so I am trying to let it go but my sister is trying hard to get me to fight along side her. But that is another story.

I know that quitting is the best thing for me right now and I am going to really watch my weight so that I do not pick up another 50 pounds along the way. I will probably be looking to you all for support as I am going to try the cold turkey way to quit and see just how knarly I can get to hubby LOL (he's always telling me to quit so I thought I'd show him) Just Kidding!

Have a great day

hugsssssssssss

Thanks Karma! In dealing with brothers it can be difficult to realize that I really do not care about the inheritance as he seems to think that I do. But ahh well what can ya do ya know? I think he figures that since he is taking care of our father (there are three of us kids in the family) that he deserves all of dad's inheritance but it doesn't matter to me. Family is what is more important then that of money...even though I am poor folk like many of you and with hubby the only one working it makes it difficult to try to pay the bills, gas prices etc.

I'm curious about where you played Football at? In HS?

I understand what ya mean hun....same with me. Financial pressures.....pain....feeling that every piece of your dignity and privacy is gone. I totally understand


P.S. I too am a huge fan of Pro Football GO BRONCOS hehehehe

Oh my, Scarred, the Denver Broncos...my sympathy...    You need to bring back John Elway, he's not having much luck with his arena football league endeavors, so he should have plenty of time...

 

I've been a Chicago Bears fan since I was 8 years old.  Not a "fanatic", but a serious Bears fan. I know..."'Da bears..."  They have at least if not more problems than Denver.  Especially on offense.  No quaterback worth beans.  They need to get their hands on Bret Farve!!  Now that would be fun to watch, what with their near hateful rivalry with the Packers!  Or perhaps the 'fridge could come back...I hear he weighs nearly 400lbs now!

 

Preseason games start on Aug 3rd!!

 

Have a great night, and many thanks for your kindness.

 

karma

Oh, PaLady, you and me, we're peas in a pod I think... Isn't it awful how this pain beast gets it's tentacles into every single part of your life? Like you said - the things that are so completely irrelevant to it are somehow still impacted as a result of the gradual chipping away of our life as we knew it.