Hey Allen, I hope moving back to Duragesic helps things. For some reason your doc is much more comfy with duragesic even if It still isn't where you need to be. On paper, if he gave you that much morphine you might have gotten the chance to experience much better relief.
For some reason I'm having a tough time answering how I'm doing. I haven't ignored your kind question about how Iím doing on purpose. I'm trying to tell the truth rather than use the answer fine, which means fine given my circumstances. That's all most people pretty much want to hear. Sorry if that sounds cynical, but most people really don't want to sit down and spend a 15 minutes trying to understand a question when they were looking for a one word response. I bet you say youíre doing fine alot too.
I guess truth be told, I'm not fine. I first heard the phrase intractable pain in 93; it was hard to imagine that people had to suffer. Enough percs would make the back pain tolerable but the nerve pain just cut through it. Part of PM used to be learning to deal with that, and the psychology of it all when it changes your entire life. Anyway, I want my life back, but have run into the same brick wall I seem to hit with every effort with PT or rehab facility. I've acquired lots of tools and learned to stretch and strengthen core muscles which makes a huge difference in the amount of crunching and grinding I can control when I walk if I make it a point to keep my posture, core, and walk correctly.
So I bought an elliptical trainer back on Valentines day for both my wife and me. I figure if I went slowly I could beak through previous limitations or barriers. After 4 months, I did by 20 minutes. I can do a great cardio workout for 45 minutes with dumbbells in my hands doing hundreds of reps with light weights Iíve been stuck here but the pain of 45 minutes is tolerable now where two months ago it was a nightmare. Now I can manage the pain and function the rest of the day. But I have been stuck for 2 months here. I work out 5 -6 days a week, have tried splitting it up into 2 workouts. Things just aren't working the way I had hoped. If I exceed 50minutes I pay for it dearly and the pain is truly intractable.
I had my pump refill today and the doc knows I'm loosing wait, gaining muscle and what I'm attempting to do. He basically said that your getting all the cardio, strength, endurance, benefit you can possibly get and that I should be happy that I was able to go 45 minutes given the condition of my spine. I do feel physically better and I have muscle tone again for the first time in years. Iíve honestly given it every ounce of effort I can and people that see me doing it think Iím nuts. Unfortunately, I hit a wall every time and just canít get passed being upright for X number of minutes without things getting out of control or using the proper term, the pain becomes intractable. Where 60-90 mgs of roxi is like taking a pez.
My doc offered to increase the pump today, but I don't want to be more drugged. I guess I sound ungrateful in some strange way to those that can't get enough meds and I'm turning them down. But I can't tolerate more without more side effects and one would be loosing the motivation to exercise .I canít take amphetamines with a history of heart and BP problems. I donít expect my doc to prescribe them because I donít think a speedball is the answer to CP for the next 20-30 years.
I feel guilty if I don't exercise, Iím going to hurt whether I exercise or not, so why not actually listen to that advice that sounded crazy when it was first given. I feel guilty I have refused a possible surgical correction which I feel would teach me a whole new meaning to pain you can't imagine or control. So after 13 years of Pain management, I mentally know the answers but have a little problem with acceptance Evan then, if it appears you have accepted things, people think you like being disabled or are enjoying it somehow. I know itís like someone with cancer putting on make up to make them appear better than they are, so you put on a happy face so other people don't feel bad. Pretty dang crazy.
During these periods of intractable pain or madness I consider surgery again. I feel obliged to do something. I see the torture machine sitting there in my den and know if I don't do something there is no chance at all of things getting better and will live the rest of my life like this and I'm at the point I really can't handle much more pain. I haven't slept through the night more than twice since the surgery in 99. But my doc thinks I should be grateful considering where I am at and what I have accomplished he thinks Iím doing great given the circumstances.. But that's not good enough. I don't have the training to make a living where you don't stand or walk and something as simple as spending a couple hours in the airport prior to a fight would require a wheelchair. I'm not ready for a wheelchair, I feel like If I give in and use one I will loose the ability. Maybe I'm screwing myself somehow. I certainly don't have the answers and am just as screwed up in my own way as anyone else.
With the 30 mgs roxis, I just don't see the point in going to the ER or asking for something stronger. All a shot will do is knock me out if they give me huge amounts. I kinda doubt I'll get those amounts although I was amazed at how well they tried to manage the pain when I was having a heart attack right there on the table on my 36th Bday. They gave me 10mgs of IV morphine 3 times in 45 minutes knowing what I took everyday.. I was wide awake thinking they were basically waiting for me to die to get out the paddles and try to bring me back.
I'm getting off course, but I donít think people really appreciate what is done in the ER. Until your are in a position of not being able to get ****** and write a letter because you had to wait too long. Most people donít understand there is a triage system and nobody has died because their CP meds arenít working at the moment. Aside from giving CP patients a hard time, they actually save lives back there. When you need someone to save your life, it's the only place to be and you don't have to wait to have 6 docs all working on you at the same time.
Did I forget anything? LOL I guess I disserve a rant every now and then too if itís not clear Iím already doing it over other pet peeves.
Take care, Dave