Thank you for the post Ruth, it really helps me to know that I am not alone. For me it all started during a heat wave we were having here in 1998. My jugment slipped for a split second and a 2 tonn machine I was moving tipped over and crushed me. I broke my back, scappula and almost every rib on my left side. I guess my biggest herdle is the PTSD, I constantly take myself back to that moment. At 30 years old, with two small kids and being the sole provider, I found myself being at work on second then waking up in a hospital bed the next. I had to lie flat on my back during a heat wave for a month on so...
I have been through all the stages, denial... and now acceptence. Luckly my wife has been very understanding and nursed me when I was in the hospital. I learned very quickly the difference between family and friends. My family have been very supportive to a piont, but friends didn't even show up to visit me in the hospital.
Nowadays I live on disability and my wife know works full-time. We get by financially, we live within are means. My kids are now teenagers and I just pray that me not working does not have a bad affect on them.
Medication makes it posssible for me to live I just wish the anti- depresants worked better for the PTSD. I never thought about taking my own life because I would not want to do that to my family. I think that suicide is a sin and also very selfish. The most important thing I can do with my life is to give my kids a good childhood. I am so thankful my parents did that for me.
Post Edited (Ruth Thomas) : 2/23/2008 8:00:44 PM (GMT-7)
I hate to put back to back posts here but after trying to go to bed I had a thought keep drumming in my head and wanted to bring here before it was lost to me forever. That is also a matter that makes road a little more bumpy,that inability to remember this morning,yesterday,at times mere moments ago. I had encephalitis way back in time and somewhere in all that I had some brain injury due to meningitis way back when that left me with a great hearing loss and even greater memory deficit,they tested me when I was battling for my SSDI for dementia and darn at 50 I had about 20-30 percent of that as well! Now I am going to attribute that to my age but I bet I could find a common denominator between all the meds I have ingested thru the years and just bet if ever a miracle occurs and I am no longer a CPer being treated with narcotics that those numbers would drastically change somewhat.
That is one of those things none of us like to talk about as well,the side effectsfrom our treatment for CP. There are many more then any of the drug handbooks talk about and you learn them the hard way and adjust to them the best you can with acceptance of them as frankly there just isnt any other way here honestly.
I take more meds to "treat" side effects of my pain meds then my Mother God rest her soul took at 88! It is almost almost a laughing matter.
I will mention a few here so you can get an idea as I bet many of you have not even thought about why your taking some of the things your taking and why after all the years of not having something you developed it.
Please no one use this as a treatment guide as I cannot prescribe meds!
Zantac or like med for GERD from the years of meds irritating the lining of my digestive tract no doubt.
Miralax for the inability of parts of my digestive tract to move when it should.
B12 for the general lethargy caused by methadone.
green tea to combat the ever widening girth I continue to gather also from the methadone.
How about xanax for the alltime jitters that narcotics have been famous for causing me?
I am sure you get the pic by this time right?
It is of my form belief this road sometimes looks much like one of those new roundabout roads alot of bigger cities are famous for,very confusing for me.
I saw mentioned a book that I have not read in another thread but have heard many a good things about and wanted to touch on what I have gathered the contents of this book are about and that is the 10 steps we as CPers go thru.
If you ever read the book "Death and Dying" a very old book that Cancer patients have been referred to over the years then read this one I believe you will see a great many similarities. The 10 steps are virtually the very ones that someone dying experiences and in essence we actually do die in a great many ways, we slowly lose parts of ourselves in this battle. I like to think we evolve into something better but who is to say and asking our family and friends might not get the answers sought as they tended to like us as we were. Ask myself and I tend to lean more towards liking the "new me" as well if not better,just take away the pain and the inability to do so mnay of the things I loved to do and my life would be at a better place then pre-cp.
We can talk more about those steps if anyone wishes,it might bring you closer to an understanding of the process of grieving for ourselves and we do that! We deny,we get angry,and we blame in some shape or forms before we ever get to acceptance if that step ever gets mastered.
I have to say here we each find our own ways of coping and dealing with each of these steps and we experience and master each of them in our own ways. Which ever methods we use to get to the means it is vitally important that we find some and utilize something to hang on to our sanity.
Well talk more I hope and I have great expectations for this thread as I think it is a great idea and can turn into a really good resource thread for all those yet to come.
Here is hoping everyones pain levels give you a break today if only for a moment.
No discouragement here,just had a really bad pain day and when those hit me I tend to wallow in self pity and become a monster to be around so I just retreat to my bedroom with a little sig on it that says"pulling my hair out" Please do not disturb.
I am lovin this thread and all the places it is going. You both are right on about the phases versus steps and how often we tend to drift in and out of them. Another thing I dare to mention at this point is exactly how long one can expect those phases to last? Here from my experience only now is that it is extremely individualized as some phases are rushed thru at some points and at others they merely drag on for days,weeks and even years and at those times we see the increases in depression and hopelessness raise up.
I also tend to think we dont all go thru all of those phases as some of our personal make-up if you will either doesnt allow us to or we have been molded to a clearer way of avoiding these particular ways of dealing mentally. It doesnt follow any kind of pattern really meaning no matter what kind of personality you had prior to begining this journey you still will bounce back and forth in those phases.
I may be in the anger stage numerous times during the course of a week. Each time I come across another barrier if you will to conquer anger has become my motivating factor to overcome. I just get down right mad to think I cannot DO something as simple as tie my own shoe today! I am not saying that this is a good way to deal with these hurdles,simply that it is MY motivating factor and may not be someone else's and this is the point. Each of us learns to "deal" if you will using whatever methods work for us.
I have to say that I have certainly lowered my expectation for my life and please dont let this make you think less of me it was a life defining moment as the lower the expectations the lesser the disappointment and that has allowed me to go places I might not have ventured in this journey otherwise. If I dont expect as much of myself now as I did before my disability it doesnt make me less of a person so to speak but just makes me far more humble as a human being.
I at some point definately learned to laugh at my short comings versus allowing them to become excess baggage I cant afford to tag around with and believe me that took some real doing for me and it didnt come early out in this game either!
I have also unfortunately had to lower my expectation of others and come to realize that fear of the unknown is many times their acting motivator in the ways they veiw me or treat me. I came to realize my family was just as scared for where my life was going as I was and that it just may be those fears that cause their sometimes confusing reactions to my life as a CPer,the same goes for the friends that have drifted away. I faced that folks just dont want to take the time to overcome those fears to be able to accept who I have become and it is kind of like losing someone to death,they dont know what to say or how to act around those dying so they just avoid them altogether.
As my motto in my siggy, If I stumble I let it become part of the dance versus allowing it to become yet another downfall for me. I just work it into the process instead of letting it work against me.
Here's hoping you each find a moment of peace and painfree day and am looking forward to more of this thread for sure!
Wow Gramps! You certainly have run the guantlet with CP and I have to say I wouldnt want to guess where all this road has taken you thru the years.
I also have to say you seem to have come out of it with a admirable outlook! Too many times in this forums we see far too many who have little or no treatment options and I want to scream at the sheer unfairness of it all. With that being said I dont know if that kind of anger would ever allow me to advocate for better treatment as anger most times causes more problems then it solves.
I for the life of me cannot understand a system that allows agencies not medically related to "rule" what meds and how much can be distributed and to whom. I cannot fathom a place where humans are forced to suffer my famous "Kevorkian" moments while the very folks who are capable of relieving them look the other way out of what? Fear? Retribution? Possibly even punishment? How did we get to this place Gramps? A better question is how do we get out of it?
How and where do we begin to try to alleviate the suffering and the hurdles that make this road that viscious circle? Such as the waiting times for SSD? The insurance companies that dictate what we are allowed to have and have not? Are what we have to pay for those have's? How do we change the fact that those waiting most likely will lose their home and spend nights of choosing between eating and paying for meds or supplies? How do we begin to comfort a parent or spouse when their loved one commits suicide when the pain got far more then any human could bear? Heavy here Gramps and at times those very things weigh on my conscious and you know those very situations are out there too dont you?
They lie beneath the surface,hidden where no one talks about them forthright. Much too difficult to share the forclosure details or the to think that someone goes to bed hungry tonight but out of pain. The sheer needlessness of it all is in itself mind boggling.
That is why I know that places like this are life savers for many,people like you and I and all those who come here are that voice in the darkness of despair,maybe our only hope at this point. I was at one of those times when I came to these kinds of forums years back and the words of one man yanked me back from the brink of no return. I had literally wallowed as far and as deep as I could have. I didnt lose my sanity then and I certainly hope I dont reach there again but it is solely due to folks like you,folks who can and do speak the truths of pain and the effects on lives.
Being a CPer is like having a terminal illness in many ways without time limits medicine can place on diseases such as cancer and heart failure,we just dont know how long before our time is up. At this point we can chose to sit and wait or hope and fight for a better way, a better day where our pain is only a bad memory.
In the meantime we have to wade thru the muck that comes with it,the stigma,the non-believers,and yes they do exist as there will always be those out there that cannot see the faces of pain so therefore dont believe it. We will continue to search new methods,new meds,procedures,and then folks like yourself will hopefully advocate for better laws and understanding lawmakers.
My hope is that one day no one has to suffer with CP as it will no longer be a diagnosis,when there is no pain there will be no chronicness in it.
Thank you always for your honesty above all. For not being afraid to tell it like it is.
First I want to clear up somethings I said in earlier in posts as I fear it is confusing for some.
I said I use anger in one post as a strong motivator and this is a personal thing for me,yes I can push myslef over my limits with anger and usually accomplish a great deal but and there always seems to be one of these, I most likely will pay dearly for that dance I had pushing those limits.
Now again I used the phrase I think in reference to Gramps reply when I claimed not to be able to do much good doing the things he does because I get so angry at the injustice of it all!
I am a firm believer that more wars have been won on stratedgy then anger and I just never was able to think stratedgy in throes of anger, I am one of those that rant and rave and spit all over myself not to mention the turning red in the face kinda thing that probably wouldnt go over well with most Congressman.
The folks who keep us as CPers are smart and to be able to beat them you have to be able to use stratedgy and be somewhat smarter then they are, I can see how Gramps wins wars, I really can as the passion for his goals shine thru.
Now with that being said and out of the way I can move on to other things.
Gramps i was lucky in my choice of which Congressman to use when I was trying to push "my dire need" issue with getting a hearing faster(already had waited 11 months for one) with no date set yet. I certainly chose one or at the very leats he had an aid that cared enough to follow thru since shortly after signing the release forms and forwarding them to his office I got a date set. That was advocating for my survival as I was sinking fast. I was trying to raise 4 kids on welfare that had a limit of 5 years and my limits were fast approaching their time. I had used them for a year or two way back when my oldest daughter was little and I was in college.
I had been forced when my workers comp money was gone to join once again the welfare roles,move into subsidized housing,apply for food stamps,and for the first time in my adult post educated life began a struggle just to feed us each month. I had no car since I couldnt afford insurance must less repair and upkeep. Using the city bus system was at times a battle unto itself, I had already had 3 knee surgeries and standing and waiting an hour for a bus or walking blocks to get to a bus stop was much more then I could do some days.
I lost my Mom and Dad both the year I became disabled and had a child born the same year as all tis and my first knee surgery that was a bust! I can remember sitting in the floor pulling the car seat up the hall to get my newborn from point A to point B since trying to carry her and use 2 crutches was not happening safely for either of us. Now add the fact my S.O. decided that my life was far too dramatic to suit him so he took a long trip out to the stoer one night and that was 10 years ago and I didnt see him again until child support court 4 years later when they finally found him hidding out in another state.
Please dont see this as a pity party as these were the early years that molded me into this I am today and taught me many of the things I know today that helps me help others so I honestly say it was a learning experience to struggle with all those programs and hurdles.
When I got hurt I was working 4 ten hour shifts,and those were night to boot,every weekend and holiday I could grab for the OT and so alot of pay were bonus hours and WC doesnt pay for any of that. It pays only for base wages and any medical person knows that we rake it in on the bonus shifts and hours not on wages or at least not back in the 90's,add insult to injury and I had just returned from maternity leave so my hours were not up to par yet. Had 2 funeral leaves as well in there somewhere that year.
I lost my behind drawing WC and yet they acted like I was enjoying the time off and the checks that came not so regularly as they always had some paperwork that didnt get it or didnt get filled.
The house I had bought 6 years earlier had very little equity in it and both the vehicles my loving S.O. left were far from being paid off. My mortgage payment was 2/3 of my entire WC check each month and I was NOT qualified for welfare as yet since I owned property and had income of sorts.
I was forced to accept their offer for settlement since th4e foreclosure was in the works the cars had long since been repo'd and we had no family support system since they had both passed away. I was looking at losing my kids to the state since I was going to be living at a shelter.
That settlement money,the part I ended up with after legal fee's and he got more then I did honestly,didnt even get us out of the hole and pay a deposit on an apartment since I had to have a very large one with 4 kids. It did buy an old clunker so we always had the option of living in it if worst came to worst, We decided to relocate and get a new start in another state and we spent a month camping out so we had money to do that,had to wait around to get the check in the mail for the settlement.
I am telling this not to get pity,not to gain your sympathy but to show how important the fight Gramps is fighting is to many of those 50-70 millions disabled folks out there. Gramps let me say I had no idea the numbers were that high and I know I used the word disabled when in fact I think you said CPers but in the end it is the same to me as pain is the most debilitating of diseases.
No one should have to be faced with losing their kids,not one Mother or Father should have to choice between meds and food on the table when this country spends billions on building and trying out new fighter jets each year only to scrap most of them! It is mind boggling just to think about.
My little kids and no others should ever have to stand by and watch everything they know and love be lost or sold to pay the rent or buy food or medicine so I can get out of bed to take care of them! Not one person in this great country of ours should ever have to spend years and every dime they have searching for a Doc who will treat their pain issues. Not one.
So as you can see Gramps and others I have a passion for this issue as well but somewhere along this circular road I couldnt lose the anger of it all,maybe I had loss too much already? I dont know but I do know how hard it is to convince those outside looking in so folks like Gramps who take on the battle have their work cut out for them and maybe he is right in saying that if each one of uses our voice and speaks up those voices in force will be heard loud and clear.
It takes a special kind of person who can say bring on the DEA,bring on your reprecussions for my actions as I will applaud them and use them to my advantage! I know those who have stood up and lost the battle against these fine agencies,it was too difficult to watch their loved ones suffer for their actions,those were the ones the folks went after knowing that was the weakness in all of us. Those we love and care about,we most have long since become immuned for ourselves.
My kids are all but grown now and I have only one left at home so maybe now that they cant touch me in that way I can learn with help from those like Gramps to use that anger and my knack for words and make a difference somewhere along the way? I dont know as I have become somewhat cynical in my way of thinking thru all of this and I certainly lost faith in a system that failed me and my kids time and time again. We survived only by the sheer grace of God and believing in the knowledge that he would never hand me more then I could balance and he evidently didnt!
Peace be to all of you here tonight.
PAlady this is exactly what I mean when I say to alot of the new CPPs "that you have to lower your expectations of the meds and procedures" It is just that,radical acceptance.
I have to resign myself to the fact that I have pain and then even though I take meds or have a procedure "suppose to" do away with that pain it doesnt always and most cases do that. It may on the other hand lessen the pain or make it more bearable for a time and that is the part I have had to learn to accept.
Lowering my expectations to accept that if I gain any amount of relief in anything that I do then that has some merit doesnt it?
If I reprogram my way of thinking to know that I might not get total relief then I am always always battling depression and disappointment in all things since we hardly ever get total relief once we reach the road where we are considered to be a CPP. I dont for one minute believe we can be a CPP if we ever get total 100 percent relief for years no matter what the factor is that gave us that relief, IMO that is and may or may not be how others see it.
The writter is certainly correct in saying at least for me this is a every minute path and and we must utilize the radical acceptance way of thinking in most everything we do to find success rates in it.
I think it is not a new way of thinking but a new name for an old adage more or less.
Thanks for bringing this up as I believe alot of folks can change their very outlook of their CP in changing the way they learn to accept not just the fact they are but in how they veiw themselves in that role.