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karmacrunch
New Member


Date Joined Jul 2008
Total Posts : 18
   Posted 7/20/2008 12:23 AM (GMT -7)   
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... eyes ...
 
Please allow me to wish all those in pain moments of rest and glimpses of laughter.  Until later.....
 
Warm Regards,
 
Reluctant Survivor

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/20/2008 12:18 PM (GMT -7)   
Greetings Great Lake train wreck! Where at near the great lakes are you located my son is in WI, green bay for the last 2 1/2 years. I am so sorry that you too have to join our HW forum and hope that this helps with your pain as well. Eight years of going through this I think I have read just about every article that can be found on the internet and beyond about CP as well as FBS and Nerve pain, but I found this board quite useful, more so than anything else. Being around fellow suffers, whether they be alike to me in the lower back department or other issues that affect their lives the one thing that we all seem to have in common is our Pain and that is what I find quite saddening and comforting at the same time that I am not the only one who is going through this. (if you understand what I mean.)

Truly this board is been a godsend for me as I feel so alone in my plight and cannot understand how my life could possibly have gone from one point to this. It is nice to know that I have found others that are in my same situation even though I wish that they were not in pain.
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


karmacrunch
New Member


Date Joined Jul 2008
Total Posts : 18
   Posted 7/20/2008 3:40 PM (GMT -7)   
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.... mad
 
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... confused !!  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)


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 7/20/2008 4:01 PM (GMT -7)   
Survivor:

My, you've been through the wringer, haven't you? I am sorry to hear of the ramifications you are forced to endure. I can empathize with chronic pain, but not the traumatic circumstances you've endured. Welcome to the forum. I am sure you will find many a friend here! I know I've found a place of comfort and encouragement.

You'll find a few virtual slumber parties and hot-tub parties happening here, too, and let me officially invite you to join in the fun! It's the little diversions like those that make this place so much fun!

Ry

btw... I tried Kadian once too... it didn't work at all for me - like taking a sugar pill. We titrated up to 80mg 2x/day and all I got for it was MAJOR constipation. I was glad to be done with it, but I know everyone is different and some people really get good relief from it.

Post Edited (ryand) : 7/20/2008 5:04:19 PM (GMT-6)


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/20/2008 4:16 PM (GMT -7)   
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.
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/20/2008 4:49 PM (GMT -7)   
Dear Karmacrunch,
I just wrote a longer welcome post to you and then got bumped off the site! So for now I'll just add my voice to the other welcomes, and say you've found a great group of people.

Thanks for sharing so much about your background. I'm sorry for all you've gone throug and continue to go through. I know you'll find and be able to give support to many others here.

PaLady

karmacrunch
New Member


Date Joined Jul 2008
Total Posts : 18
   Posted 7/20/2008 5:07 PM (GMT -7)   
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

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/20/2008 5:21 PM (GMT -7)   
RS great to hear back so soon from ya. LOL about the metal detector! I suppose the way they have them set so sensitive that it would beep on me. :-) The Mylogram actually shows the nerves much better and they can map where the nerve is pinching at or so that is the hope. Not real happy about going through a second Mylogram, but if it will show where the pain is I say I will put up with the pain and do the darn thing.

I am not working and haven't been since 2003. I am currently trying to get Disability and just recently had my hearing with the Judge Advocate. my attorney tells me the only thing that is going against me is my age, which I am 44.

The pump I have heard good and bad about alike to the stimulator, I have done my research on the pump and if it gives me the relief that I am hoping for along with being out of the drug fog that the meds cause it will be ok with me. I unfortunately walk like I am 89 years old and that gives me great grief because when I walk I have a tendency to cause hubby to walk slow and since he too suffers from back problems (was diagnosed with two herniated discs two days after I was struck down but yet his isn't bad enough to require surgery and he has been fine since) he gets pains in his back as well by having to walk slow for me.

Thank you so much for all your nice words, if you need a shoulder to cry on I'm always here, usually unless I get blessed by being able to sleep for a bit. And you can always IM me or Email me.
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


karmacrunch
New Member


Date Joined Jul 2008
Total Posts : 18
   Posted 7/20/2008 5:26 PM (GMT -7)   
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

karmacrunch
New Member


Date Joined Jul 2008
Total Posts : 18
   Posted 7/20/2008 8:15 PM (GMT -7)   
You snuck one in on me while I was writing a post, Scarred-For-Life!  If another myelogram helps ultimately to reduce your pain, then God Bless for a great outcome.  I guess there are a few advantages to my various conditions...there are many procedures docs won't do to me anymore.  I won't miss the myelograms.
 
I was 45 when social security finally determined that i could not, afterall, pick almonds in Brazil.  Age and education really make it tougher.  One of their 'associate physicians' told me vocational rehabilitation would enable me to return to some type of employment.  Social Security does not care if the job they decide you can do is even vaguely related to your past experience.  Just so you work.  I think what substituted for an attorney for me was a woman at our local SS office.  We developed a great working relationship over the years, and she advocated for me and made sure I collected all the necessary paperwork.  I'm sure you have a huge volume of records, too!  If your physician knows a 'friendly' psychologist, the best would be one specializing in chronic pain (they exist!), ask for a referral for an evaluation to establish a dx of "Chronic Pain Syndrome" and perhaps secondary depression.  Both are AMA and SS recognized disabling disorders.  Couldn't hurt?  No large needles or hideous gowns!
 
My only personal concern regarding a pain pump is that it basically represents the last really big guns.  If it failed, it would require resumption of a previous pain management regimen.  However, when successful, which I understand is more often than not, the pumps have been Godsends to many people.  They have so many advantages with respect to drug delivery and required doses.  Also, as you indicated, the narcotic side-effects are nearly nonexistent.  Oh yes, to have one's brain all the way back...  I haven't given up on the possibility I can reduce my meds to the point where there's less fog.  I've even lost sight of the lighthouse off Kelly's Island.....?
 
I started this some time ago, 'bout time it got posted.  Hope you & yours can avoid those back-breaking walks!
 
Regards.
 
RS

tom inpain
Regular Member


Date Joined Jul 2008
Total Posts : 239
   Posted 7/20/2008 8:23 PM (GMT -7)   
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
Tom Lasko


karmacrunch
New Member


Date Joined Jul 2008
Total Posts : 18
   Posted 7/20/2008 8:58 PM (GMT -7)   
Hey Tom!  Many thanks for your very kind greeting!  And yup, I'm overly acquainted with Hades' landscape too.  Bad Place.  Too easy to get lost in places best left unvisited.  It's another ongoing fight for all of us.  Since the PE, my outlook has changed, and I am able sometimes (not often enough), to view specific moments and appreciate only them.  Then the dreaded reality of our war intrudes, substituting suffering for focus or concentration.  But since I basically have been reduced to having good hours as opposed to good days, it may be less difficult for me to at least temporarily exist in a good moment....Rambling again...sorry....I'm tired and need to remove myself from the computer.  Oh, speaking of this machine, Tom, my hammer, pliers and other blunt objects are within reach!!!
 
Have a great Monday (right... eyes )!!
 
RS

grannymac
Regular Member


Date Joined Dec 2007
Total Posts : 35
   Posted 7/20/2008 10:58 PM (GMT -7)   
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.

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/21/2008 3:45 AM (GMT -7)   
That is wonderful that the pain pump worked so well for you, it gives me reason to hope. My dad was diagnosed with COPD ten years ago. His lungs are now working in a lessened capacity and are only at about 8 percent. Docs told him they can manage the pain, anxiety and other things (he is on O2 24/7) but that there was no cure. With this news it only got worse and like I said he is now in the last stages of this disease and has set his affairs in order. Sad to realize that I am going to loose my dad before I can see him grow old (he's 71). He's lost so much weight, down to 120 pounds and was a healthy 185 pounds. He struggles so much with breathing that I only make short phone calls to him so that it does not wear him out. My brother takes very good care of him and I go see him as much as I can (even though he belittles me about my back).

I have been working on trying to quit smoking myself (only vice I have) and realize that if I don't take care of me no one will. So with that I am going to start my not smoking life in two days. So just so you all know, I might get crabby from time to time for a little while.
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


karmacrunch
New Member


Date Joined Jul 2008
Total Posts : 18
   Posted 7/21/2008 4:24 AM (GMT -7)   
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

karmacrunch
New Member


Date Joined Jul 2008
Total Posts : 18
   Posted 7/21/2008 5:01 AM (GMT -7)   
Good Morning Scarred for life!  I am so very sorry about your Dad.  God Bless you both.  It's so hard to witness slow deterioration.  I did so with my Mom.  Guess I'm in a similar boat as your Dad, just a little further upstream is all.  I'm glad his docs are trying to deal with the issues which accompany COPD and other progressive lung conditions.  The anxiety and dread that follow an episode of severe restriction are overwhelming.  A pure, deep breath is somethng I treasure...wish it was not an endangered species..
 
My Dad is 77 and has had several small strokes.  He mostly rehab'ed great, but there are possibly severe memory issues occuring now.  It must be soul wrenching to see your Dad, although I realize we all adjust with time, the shock, I think, never quite disappears.  God Bless you for keeping him company.  I'm certain it warms his heart.  My daughter (i'm 52) visits maybe once a month and they live only 30 minutes away.  Love those graddaughters!  Sorry...I won't get started on that one right now!  It sounds like your brother has your dad's care under control.  Such a relief and save from the indignity of some "assisted living" facilities.  Just my humble opinion.  I sure don't plan on concluding this part of the journey in a place when I canot really exist.
 
I beleive I already admitted to my moronic smoking...not nearly as much as before...like that matters, but the quiting thing is so difficult!  Nicotine is my only habit too.  hard to give-up an only friend.  I'm so impressed by your willingness to give up the killers!!  Are you using any of the numerous "aids"??  I quit for nearly a year after the PE using patches.  Since then I've tried Chantix, but not liking the side effects I stopped after about two weeks.  What a rock of determination... mad !  Your "crankiness" will be welcomed!!  I've seen studies suggesting that online smoking cessation support increases success rates significantly.  So maybe we can help walk you through this...lots of broad shoulders here to lean on!!  Best of Luck and please keep us informed.
 
I have an early meeting so it's off I go...Hope everybody enjoys a relatively pain and worry free day!!
 
Best,
 
RS

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/21/2008 5:31 AM (GMT -7)   
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
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


karmacrunch
New Member


Date Joined Jul 2008
Total Posts : 18
   Posted 7/21/2008 9:42 AM (GMT -7)   
You're very welcome, Scarred For Life! Sounds like you're dealing very well with a situation that generates enourmous stress. Small world, but I have a very difficult brother, too! Haven't seen or spoken to him in over 2 years (he lives 15 miles away). I've received similar threats re the dreaded inheritance issues. Oh well, he can have every penny and whatever if I can have our dad with us and in better health for years to come!! I pray your bro wises up to what matters in this life. Sometime the years will force a little wisdom down your throat. I think you have the right attitude, for what it's worth.

As a former clinical observer of people, I'm anxious to see how your "knarly" manifests itself. Stock up on hard candy or something to put in your mouth, get plenty vitamin C, and as for the withdrawal symptoms there is no simple answer except whatever works!! Diversion. Unconsciousness..:) My longevity literally depends upon my quitting, but no excuses now. Later, when I try to stop. Best of luck!!!!!

Godspeed,

RS aka karmacrunch

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/21/2008 9:51 AM (GMT -7)   
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?
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


karmacrunch
New Member


Date Joined Jul 2008
Total Posts : 18
   Posted 7/21/2008 10:20 AM (GMT -7)   
Yep, Scarred, brothers can be disconsertively mysterious.  I played football in HS and was recruited by a couple small colleges.  I attended Heidelberg College in Tiffin, Ohio.  With the vision of the HS neck injury fresh in my mind, I experienced a bout of common sense, and, after practicing with guys 200 lbs larger than me, I determined that it was time to officially retire.  I was fast and quick in HS, in college everyone was fast and quick, and disturbingly large.  I involved myself in other activities in college, withouth further injury... :-)
 
I hear ya re the financial pressures.  I can only barely exist on my monthly SSD.  It requires much resourefullness.  Not to mention deprivation...
 
Well, things are happening fast right now for me with respect to treatment modalities and service availability.  I won't go into detail now, but it feels curiously like a state agency has taken over and is slowing clawing away at my independence, privacy and dignity.  I have a hard time with acceptance.  Inside, I'm still the same guy who could fully participate in life.  This is hard.
 
I need to free up the phone (yup, a primitive dial-up) so the case manager can contact me (again!!).
 
Best Wishes,
 
RS

P.S.  I continue to enjoy both college and NFL football.  As a spectator!

Post Edited (karmacrunch) : 7/21/2008 11:23:33 AM (GMT-6)


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/21/2008 11:28 AM (GMT -7)   
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
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/21/2008 4:29 PM (GMT -7)   
Karma & Scarred,
Wow - some of your words hit a nerve with me. Deprivation....that hangs in the air for many of us here, but I don't think I've seen the word expressed recently - but I sure feel it. And I'm not a material girl, but my 10 year old car is rusting just like my body, and my house....won't even go there. All the dignity and privacy and integrity I've worked nearly 6 decades to maintain are slowly being stripped away. Feels like everyone knows everything - or soon will - about all my health issues (even irrelevant ones I've had for decades that are NOT relevant to my currrent pain issues, but they're in the history), finances, and heaven knows what else. I've always been a private person and sometimes the universe has a way of teaching us lessons, but this is a bit much to have happen so fast!

So I fully, fully understand.

And by the way, a thread from a couple of months ago detailed a lot of my struggles with quitting smoking back in 1990. I used to smoke 3 packs/day! One of our other members was trying to quit (lassieluv) and I'm not sure if I can find the thread with all the info but I'll try. The website dedicated to helping you quit are supposed to be great, and I would strongly advocate you plan for a variety of ways to deal with both psychological and physical withdrawal. I only had gum available back in 1990, and i really didn't like it, but now there are lots of choices. I learned to respect the power of being physically addicted to a substance - nicotene. And it is extremely potent!

I'll be cheering you both on!

PaLady

karmacrunch
New Member


Date Joined Jul 2008
Total Posts : 18
   Posted 7/21/2008 4:38 PM (GMT -7)   
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

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 7/21/2008 4:43 PM (GMT -7)   
This will be my umpteenth time quitting, but my second real good attempt. Four years ago I quit and lasted 3 years, so I have the willpower there its just doing it ya know... Too I think the reason why I started back up was because of the fact that I was topping out at 185 pounds which my body is not used to and hated every moment of it. So I am hoping this quit I can just do the same thing I did last time once more.

For some odd and unknown reason Crunch is an easy person to speak to (not saying that any of you are not easy to talk to, because that is not the case since it seems that I have now gotten much out on this board). I don't know why he is easy to talk to LOL

I agree that the pain seems to chip away all of the dignity, respect, and self worth as well that anyone has.
HEALTH ISSUES: Herniated discs at S-1-L5, L5-L4, L4-L3. Two level fusion (2000); one level fusion (2002); Revision at L4-L3 (2003). Diagnosed with Failed Back Syndrome, Permanent Nerve damage and Chronic Pain

Medications:

Kadian, Lexipro, Percocet, Temazapim, Lunista, and Robaxin.

Post Edited (Scarred_for_life) : 7/21/2008 6:05:37 PM (GMT-6)


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 7/21/2008 4:50 PM (GMT -7)   
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.
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