r u going to be in cp the rest of your life??

Yes, I will have cp for the rest of my life. It was not easy or is easy knowing this and at my last pm appointment my doctor asked me point blank where do you see your pain going down to and it was hard to say but I said a 4 which may or maynot be realistic. with so many people coming on here each day this is not what I would've brought up because it can make you lose hope. Somedays hope is all I have to hang in there and today was especially bad for me as I've had such a sore neck adding to my pain.
What I would say is evualuate your pain at home, think long and hard at what a realistic goal for you would be and talk about that with your doctor and ask your doctor if that is achieviable. Work with your doctor is very important and then seek out emotional help with a psychologist to help on really bad days
....its hard of course to hear this but then from here you can get a plan for where in your life your pain management goals will be realized...it won't be easy and its always changing, but it gives you a way to keep hope...
Keep hope..
Many well wishes and I hope this makes sense...

Yes, I will be in pain everyday until I die. I knew this at age 6 when I tore my kneecap off. Gotta love those drunk drivers. Funny thing is, I never thought of myself as a cp'er. I just knew I had a bad knee. This didn't stop me from doing what I wanted. I just paid for doing really active stuff. I still joined the army, still restored old cars, had kids...I still lived an active life.

Everything changed last Feb. and now my shoulder/arm is now massively fried. This injury actually put me in the cp role. I cant do anything for very long without crying. I cant wash my hair or open a jar of peanut butter without help. I used to build haunted houses, rock climb and repel, now I struggle to fold a load of laundry.

Will my shoulder injury be forever? I don't know. If this turns out to be what they think...well, then even with years of Pt and multiple surgeries it will never be even close to 100%. But like my knee its only a part of me. No matter what happens with the shoulder I will get past this. I refuse for this to be forever. My quality of life will improve somehow someway.

Like Vicki said there are medical advances happening everyday. Today isn't my day, but I am tired of waiting. So I keep pushing. I keep telling myself that I can do it...and even when I prove myself wrong, I just regroup and go at it from another angle. I refuse to accept that this is as good as it will get. I am not expecting 100%, just better.

Well, this is an easy one for me: I'll be in pain management the rest of my life because my life will only be a few years longer. But I do have an encouraging story for anyone with chronic pain.

I had pain in my side that just could not be controlled, so the doctors kept increasing my morphine till it was up to 200 mg a day, and finally I got good control, with minimal but annoying side effects--dizziness, constipation. My current PM doctor was sure i'd be on that indefinitely, and thought at most I could taper down to 75 mg rather than 100 at night.

Then my intercostal nerve block kicked in, and I dropped to 30 mg morphine a day. My PM doctor was stunned. He kept thinking I was just kidding myself and I'd need to increase it, but I've been on that lower dose for six weeks now, so he's finally convinced. He said he's never seen such a dramatic drop in drug needs in my situation from just a nerve block, but I told him the response to the 18-hour test block was just as dramatic, so it wasn't unexpected.

So the lesson is--it's possible there might be some procedure out there which could really help with chronic pain. I know there are folks here who have tried everything with no luck, but for those who haven't, it's possible, and there are also new techniques being developed. Even my nerve block will need redone once or twice a year, and I still do need some medicine so it's not a total solution, but it's stilll good news.

Have you received the results of your MRI yet? If so, what did the dr have to say about it. Like I posted to you earlier, I am not surprised at all that you are having back pain considering you had a bad hip. That bad hip & new hip does affect your gait when walking. I hope that your MRI comes back good & the back pain is stemming from the hip situation.

Living with CP does not mean our lives are over & it certainly is not a death sentence. We have to make adjustments in every aspect of our lives to learn how to live with it. None of this happens over night either. As a mod once said here many, many years ago, living with CP is like peeling the skin of an onion, its done layer by layer.

You are very young with lots of years ahead of you plus you have 4 small children that need their mom. Its going to be a tough job but its also a doable one. Depending on how you view yourself & your abilities will determine how well you will live with CP. Its not easy by a long shot & we have to make concessions & keep it realistic at the same time.

Delilah, this is something I think about a lot, considering I'm 38 and also have three small kids.

One thing that Vickie taught me, or rather forced me to realize, (though she may not know she did), is that my kids can and will do a lot more if I expect more of them. My daughter (who is only 5) loves to help the most out of all of them. Well, it used to be more of a hindrance than a help to me since she just messed things up more and I let her help for 'fun.'

But then I started teaching her how to do things the right way and guess what, I hardly have to do dishes anymore ;-)

I've also started teaching my 8 year old how to do laundry, since this is one of the tasks that sends my pain through the roof, with all the bending to pick up the clothes, toss them in the laundry, transfer to dryer, etc. So he's getting there.

The three year old is now in charge of cleaning the playroom every day at the end of the day.

My kids just love when they're told that they're "in charge" and really step in to that role to help out. Really this is something that I think all families should do, but it helps out even more for a CPer and a mom.

So, thanks Vickie ;) It was your nudging that got me to do this with my kids. My house work has been decreased about 15% so far but we're still in the beginning phases of learning.


As far as when I realized it, well, I am still realizing it. Each appointment lately I'm told that what I need to do is manage, that there isn't a cure, but I can manage. I want to scream each time I hear this but the more I hear it the more I realize it might be true. It's just, adjusting to a new normal. It takes a lot of pressure off when you stop looking for that magic bullet that's going to fix you. It's all about (for me) putting as many tools in my toolbox for dealing with things as I can. Maybe one day I won't need them anymore, but now I do. I cannot see being on opiates the rest of my life. No way. But I also don't put pressure on myself that I have to get off of them NOW. When it's time, I'll do it, but that won't be now or maybe even three years from now. I don't know what the future holds.

Hugs, Delilahblue, just remember, you're not alone and secondly remember, your kids can do more than you think! Even if they're already doing a lot around the house, they could probably do more.

Post Edited (Backtolife) : 1/11/2015 10:20:45 AM (GMT-7)

Btl thanks for heeding the nudge and its awesome your kids are learning from the experience. All too often over the last few decades with single MoMs,two working parents, and the age of electronic babysitters our children have lost the ability to be self sufficient, entertain themselves demanding adult attention and not realizing their own potential to take pride in jobs well done no matter how menial the job may be. In turn we have been blessed with teens who show no respect for authority, certainly none for the adults in their life and feel they're entitled just for existing! My son's just as good a cook and housekeeper as my daughters and my daughters are all self sufficient and supporting and value a job well done. They all work in serving others areas and all go out of their way volunteering to help the needy whether human or animal. You never have to worry one of mine would park in a handicapped space but if you do and your not handicapped you'll have to worry they're going to set you straight about it. Those traits all came I've no doubt from being part of my CP life. They learned from me how to attack each thing from whatever angle worked and although that may not be the way someone else does it there's no right or wrong if the job gets done.

Your teaching your children far more then chores and that's going to carry strong children into stronger adult roles. Thats priceless!

I am going in Feb.4 for geniculate nerve ablation for left knee. I am hopeful that will stop or greatly reduce my knee pain to the point over the counter medication (if any) will be enough. My back only hurts when I stand/walk more than 10 minutes or sit in one place for more than 45 minutes. The prescription medication does not touch that pain. So no need in taking it for the back. I just avoid those activities as much as possible.

Yes
Is possible I will always be in cp.

Also possible a medical breakthru might happen at any time.

Re: kids helping
As a single mom my goal was always to teach them to be self sufficient. For their sake. Awareness of my own mortality encouraged me daily.