I don't know how to begin a new life. I have lost so much of what defined me as a person.

Hi to both of you:

I also have a myriad of cervical problems(all the both of you have) I also have severe stenosis thoracic, lumbar.  Herniations t-12/L1: t1c7: L5/s1 etc, 

I have a spinal cord stimulator and a morphine pump and am on oxy.  I had a "normal fusion c4-6 in June 2005 and was never released to go back to work.  I was a very active worker, etc.  I was an auditor for state taxes, taught at college, and was active in community organizations.  I also was lost, but what I enjoyed most(helping others) I have been able to continue to do thru church activities.

I have learned along the way that worrying causes stress, which exaserbates your pain.  Keeping your mind busy, and on others and other things helps a great deal.

I was told that if anyone attempted surgury again i would definately be paralyzed, but I can't dwell on the ifs, whens, etc.  I can only thank God in the morning he is letting me walk another day and help those less fortunate than I am(it brings a smile to my heart)

I guess I am a glass half full and the both of you are not there yet.  Try to turn your glass over and be half full, you may be surprised at the good you could do without taxing yourself physically

your story is interesting and actually i think i am the poster boy for pain management at the neuroscience institute i am being treated at....at least that is what they think! i have always seen the glass half full and actually people use to say that if my house were burning to the ground i would stand back and tell people to enjoy the beautiful colors of the flames....i do find that volunteering at my synagogue and forcing myself to interact socially is very positive (i always make sure i look good) BUT..i am living a double life....i am ALWAYS in pain and even though i "look good" and project a cheerful facade i am suffering terribly inside...i have a wonderful wife and family and my major goal in life is not to be a burden to them....i think only a fellow chronic pain sufferer can relate to and understand this "dual existence" ....everyday i wake up wondering if i will be able to keep up the outward me....there is definitely an anxiety component to my chronic pain, but everyday is another adventure in suppressing pain and anxiety....what sort of treatments are you undergoing now?...have you ever had the radio-frequency ablation done?....how about a chronic pain group?...meds?

beanie

Hi beanie

Thank you very much for your optimistic attitude.  I really appreciate your advice.  I am having cortizone shots every couple of months.  They seem to help most of the time.  I'm thinking that my problem is that I am stuck in the past.  Everything I have loved to do required controlled use of my arms.  Not possible anymore.  But... I have always loved to work with children and I was a Foster Parent for 5 years so I might just inquire at the local elementary school about helping children read.  Or help out in a craft class.

Thanks very much for your words of wisdom.

Lucky

Beanie:

I am sorry, you are having such a problem.  Unfortunately I think you need to have a discussion with your family and yourself, that you are what you are, you hurt and feel like crap sometimes.  I have not read the book that has been mentioned in discussions on this site something along the way of ...but you don't look sick...this might help

also areas for caregivers and family of those that need understanding on this site.

I found my acceptance of my disability the hardest mountain to climb, and still find this hard to this day.  I have recently organized a big fund raiser picnic thingy at church with the exchange club(past saturday from noon to 5) and I got there at 8 and left at 10:20 way before it even started.  This was really hard, but my gift is organization, and I organizized to death....everything went off without a hitch....and when i left i had the attitude of whatever happens happens.  I only do what I can.  I have to do basically nothing for another month(recent surgury on the 10th to put new catheter in spine from morphine pump) to let the catheter seat and heal.  Please don't put on a front, it only hurts you in the end...you push push push, so people don't see the pain and pay for it forever afterwards.  You are what you are.....not superman anymore...

grieve for who you were and celebrate who you will become...

God Bless

Dear Beanie

After re-reading your e-mail I noticed that you mentioned joining a chronic pain group.  I have never been much of a group person but I think it could be helpful.  My only worry is that it would be a bunch of people whining about their problems and not providing any constructive information.  Have you been to one of these groups?  If so, what was your experience?

I have read many e-mails today.  Did you say that you participated in a Pain management program?  If so, can you tell me if it was helpful?  I inquired about it years ago and it was a two week live in program.  Then they told me that they were going to take me off of all of my medications and I backed out at that point.  Was your experience one where you had to live there for a couple of weeks and go off of all your medicine?

Lucky

Hi Nan.

Thanks for your reply to my e-mail.  I have received two e-mails from two very optomistic people who have chosen to see the brighter side of all of this.

So today is a new day and my glass is officially half full.  Now I just need to figure out where to put it!

Helping others always makes me feel really good.  Especially helping children.  I might just go over to the elementary school and see if they could use another volunteer.

Wish me luck.

Lucky

Lucky:

WAY TO GO!!!!! I am sure you would be an asset to any program.  Enjoy and explore any avenue to go down, Maybe local homeless shelter, abuse shelter somewhere can use help in a day care type situation.  Have fun!

I so totally agree with you! I had 3 surgeries on my spine last year alone. They removed a few discs in the cervical region and installed a metal plate with 6 screws to hold that area together. Then 3 months later  they repaired a 90% stenosis in my lumbar area and removed a nearby disc that had wrapped itself around the nerve. Then 4 months later they went back in when the lumbar vertebrae started dropping down over the vertebrae beneath them. They used some experiment clips to reposition the vertebrae and hold them in place.

Besides that I have had 2 joints totally replaced, a couple of fused joints, torn rotator cuffs (from falls) repaired. I recently fell again and broke my kneecap which needs to be removed and I was recently told that I will require a new hip this month as well. I have a rare 1/500,000 to 1/million genetic disorder that has ruined my eyesight, and is now stripping the lining of my veins. I am told that I probably do not have more than a few years left. I do take narcotics-i.e. morphine and hydrocodone. No, I am not afraid of addiction- as I see it, so what if I am probably addicted. Is a diabetic "addicted" to their insulin? With the narcotics I have some kind of life at least. Without them I have nothing.

I have no control over what this disorder is doing to me. But as I see it, I am still able to think, and I am still able to feel and I do have a choice over how I deal with the world. A smile is a matter of choice. Finding projects that allow me to focus upon something besides the pain is a matter of choice. I too was a professional (PhD) and  the pain forced me out of my profession- not an easy change to make. But I knew I could not survive if I was going to do nothing.  I knew I would die if I didn't find someways to fight back against this disorder.  I am living in a nursing home now because of all my physical limitations. I am considerably younger than most of the people here. But I have found ways to give and stay busy even here. Yes, it is very difficult to do, even impossible on some days. But it is only my decision to stay as focussed and as busy as I can that makes it possible for me to stay alive. Pain is a life-changing event. But we do have some choice as to how our lives are changed. And don't let the pain tell you otherwise!

Sometimes it is only my faith- that things happen for a reason- that keeps me going. Nothing is random. There is a plan within all this, even if I am not able to understand it at times.  Please try not to let the pain determine how you are going to live your life! Your life is just too important to let that happen! My thoughts and prayers are with you all.

Hi Beanie

Thanks for your kind thoughts.  Can you tell me what radio frequency ablation is?

My anesthesiest? told me that there is an injection he can do to the nerve in the C6/7 area so that I don't feel any pain.  I'm scared though.  The first time I went to this Dr. he injected a nerve in my neck and I couldn't lift my left arm.  Consequently, the muscles atrophied and I had to have surgery.  I repeatedly asked my Neurologist about why this happened and everyone did not want to talk about it.

The injection  that he currently wants to do has a 1 in 1500 chance that I will have a stroke and end up in a wheelchair.  The problem is that I am afraid that the same thing will happen to me that happened previously.  This is a very well respected Dr. from a teaching hospital and I keep telling myself that mistakes can happen.  I guess the stenosis is the problem.  Such a small space.  What do you think?

look forward to hearing from you.

Lucky

radio-frequency ablation (rfa) is where you are put under and they direct a laser beam to the facet areas in the neck....essentially deadening the nerves.....the problem is that these nerves regenerate and i can hope for 6 months to a year of relief (and not total).....i am willing to remain proactive and have to give it a try....i was in an intensive 5 week pain management program (i did not stay in the hospital)....it was 3 hours a day of physical and occupational therapy and some (not enough) feedback techniques....they also "tweaked" my medication....i thought the program was great but they do tell you that you will not get better (maybe worse) the objective is to teach you to deal with the pain better....like i said i am already the poster boy for pain management (so the outside world thinks)...they are so wrong...i am having the rfa on friday morning!!

beanie

Dear Beanie

You must live in the U.S.  I have asked my Neurologist about lazer therapy and she said that Canada is way behind the States.  Let me know how it goes.  6 mionths to one year of relief!!!!  Yeah!!!!!

I hope all goes well.

Lucky