Where this road leads?

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notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 2/23/2008 2:25 AM (GMT -7)   
It seems this question remains our most asked one doesnt it? Maybe not in those exact words and not always by new CPers but those who love and care for us. Time and again I have ran it thru my mind and yet the answer is always outside my reach.
 
PAlady saw the very question inside the written words of myself and others and did so because it was a familiar thought as well.
 
I started down this path one normal Saturday in early September of 98,a day like many others,hurried,running late for work and knowing it was going to be a stressful day of shortages of staff for the patients that lie waiting for me. Less then 2 hours into the shift I moved the wrong way doing something I did time and time again and little did I know that would be the trigger point to this life I have accostumed myself to known as CP.
 
Early out in the game I only looked for the time in weeks leading back to work distributed by the many participating in my recovery from this injury,therapists,Drs,Nurses,injury specialists,rehab,surgeons,PAs, I ran the gauntlet of those who led me to believe and maybe they believed this was only a setback for me not an end to a life I had known.
 
I dont recall the exact moment I knew it was all a lie,but I recall the overwhelming feeling of anger and depression and sheer hopelessness. I recall the fear of now knowing what was going to happen to my kids and their lives. I certainly can still feel the depth of pain I felt from the loss of friends and family that virtually at some point gave up on me. I remember the at first days of isolation then the weeks and months as time passed and the visits and phone calls to ask how I was doing became fewer.
 
At this point I was still trying to vividly deny the accusations by those very folks who "cared? about me that maybe I had a drug problem? I was taking too much pain med and if I didnt maybe I would feel more like getting out? I cant begin to understand this rationale but it seems to stick out as one of the most widely used excuses my family and friends could find for me.
 
The losses became so great at times of so many things in my life that I began to wonder how I was going to survive with so little of myself left. They almost convinced me I had a problem as at that point I was willing to blame anything for this nightmare I had awaken to.
 
I think at this point I will stop for now as I want this thread to take on meaning for many and maybe it will be a place where folks can stop by and see they are not alone in their process and this road takes on many facets and curves along the way.
 
From the first step to teh last and all that falls inbetween someone can learn from the travels of others and if one persons steps are made easier by our telling of it then it has proven to be worthwhile in its telling.
 
I am sure many of you here have some great words and advice for others and all of us can take a little something from here and leave a little something behind.
 
Whether it be the technical stuff of the battle with SSD to the down right disgrace the many faces of the government uses to make our travels more difficult. The answers some seek will never be cut and dried and as no 2 persons,disabilities,stages of acceptance or denial will ever be the same but we all have one common denominator- PAIN never ending,always changing, in our lives.
2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 2/23/2008 3:48 AM (GMT -7)   
WOW!!!!!!!!! is all I can say so meaning full and
so very true.
THANKS
june

volfan
Regular Member


Date Joined Nov 2007
Total Posts : 58
   Posted 2/23/2008 8:33 AM (GMT -7)   
Thank You Ruth,
I too can feel your pain and anxiety from living with chronic pain. The worst part of it is that not only do we have to cope with the physical pain there is also the deep felt emotional pain. When it happened I felt as if my heart had been ripped out and I had to watch it beat before me! As long as my work days were I had a feeling of accomplishment and that of being needed. I went from being a person of authority to a person who is able to contribute very little. I am certainly unable to work but maybe could do some volunteer work at my own pace and schedule. BUT there is that feeling that someone is watching and hoping I would do something that they could capture on film to take everything away from me and my family! I guess it is a feeling of paranoia. However, it's not paranoia it is real and happens regularly, but then I wonder why I worry. I'm honest and not a leach on society. Is this normal?
It's not right to have to fight almost daily for the necessities of life such as health and life insurance, workers comp and disability. Not being able to enjoy life as we once did because my income has been reduced by 40% is painful enough. Just making ends meet is painful enough! I've been told to ready myself for the long haul because life as I now know it is my life from now to the end. Full of pain, walking on a quad cane, and worrying about the future.
Thank God that I know Jesus Christ. The Bible tells us not to worry but it almost feels almost stupid not to worry.
To add to all the above I have a spouse who is about as supportive as a willow branch. I'm ridiculed on a daily basis because I have to take narcotics. The remarks I hear because some of the meds affect my memory or for just taking anything are so hurtful! I've even told her she should stop and think because God may afflict her due to her lack of understanding and for being so judgemental. Her remarks and actions are unbelievable.
Please forgive me for rambling and sounding so depressing! But you know what, I refuse to let any of this get me down. I strive to rise above it all and be thankful for what I do have. I could be dead from passing blood clots into my heart and lungs. From the Saving Grace of God I'm still here and I know it's for a purpose. The best thing we can do for one-another is to hold each-other up and to request prayers as Gramps did for his mother.
Have a Blessed Day!
Volfan

Dictionary
Regular Member


Date Joined Dec 2007
Total Posts : 29
   Posted 2/23/2008 11:06 AM (GMT -7)   

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.


L2 Burst fracture in 98.
damaged disks in thorasic spine.
Depression
 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/23/2008 2:37 PM (GMT -7)   
Thank you, Ruth, for starting this thread, and "hearing" me in my other post. There is so much to say it feels too potent for me to write at this second, but I will. I hope this thread stays active.

Your comments on losses not only of family and friends (hit home for me!) as well as the struggle to find what's left of our own essence touched me deeply. I know a few family members keep telling me I'm still "me", but they really can't appreciate it from the inside out, as we can. And volfan's reflections about loss of integrity when one has to struggle to meet basic needs also hit home. I've never had to lie before, other than the small ones we all tell from time to time to not hurt a friend's feelings, but now I find I have to hide or outright lie to hang onto a roof over my head - and I may not be successful at that. The financial strains and struggles compound everything. Like the pain wasn't bad enough.

More later....and looking forward to a continuing dialogue with others.

PaLady

Obtuse1
Regular Member


Date Joined Feb 2007
Total Posts : 114
   Posted 2/23/2008 6:39 PM (GMT -7)   
Ruth, appreciate your starting this thread, following PAlady's thoughts to start something on 'acceptance'.I will share my own ideas and experiences here, but cannot tonight, the sciatica's winning the fight tonight so gonna take a hot bath & try to sleep. Anyway, really appreciate this topic.
[2}Dx: Post Spinal Fusion chronic pain since 1984;Polyneuropathy;Meniere's Disease, Left ear deafness & severe tinnitus on both sides, Left; Intmt Anhedonic depression;
Hx,Meds: donthearishoutyou.com/blog/


notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 2/23/2008 7:53 PM (GMT -7)   
Thanks not needed as my intentions merely selfish in nature as I learned long ago actually speaking the words are far less threatening then thinking them. Too many times I reqiure the need to be humbled as I get caught up in the struggle of my existance and forget for a moment just how lucky I am.
 
I see resemblance in so many of your words it is eery isnt it?
 
I see patterns between all of us that no one put in any of the medical texts to warn of there impending occurances. The symptoms of CP have grown by leaps and bounds in this post I think.
 
My husband bailed early out so I faced raising the kids alone almost from the start of this road. Maybe I was the one that really bailed on him,it matters not but the constant feelings of inadequacy he bestowed upon me and the innuendo's of how I might be "addicted" or the well meaning "tough it out"s bit the bullet,stop whinings,eventually brought me to understand he was nothing more then excess baggage for me and the weight of his probelms with me were far heavier to carry then my disability at times. It was almost like he thought I wanted to be here and I wanted to lose who I was. The relief of not hearing it day in and day out was such weight off of me I actually thought of taking dancing lesson! Hehe sorry had to get that one in.
 
I can remember very little at times and if it wasnt for my journal not sure I would  know what day it is but I DO remember the 1st time I applied for food stamps and a welfare check like it was my birthday. The feelings of despondancy were almost too much and the same rang true for the subsidized housing we were forced to enter while fighting for SSDI and the abject fear for my kids of the unknown,unfamiliar to them and I thought about things like how their friends were going to look at them and how in the world were they going to hold their heads up in a teen world where peer pressure ruled. I needed not to worry as the experiences we traveled together brought forth some of the most compassionate,caring,and respecting kids I ever thought I was capable of raising in todays world.I am truly blessed by them. There is not a one of them that I feel would not be able to handle being a spouse of a CPer. Not a one. They have the ability to see beyond ones living arrangements,life circumstances,and judge souly by ones words and actions.
 
Even though there were many times I descended into that deep dark place of depression time and time again I cant say I ever gave thoughts to ending my life at  those times,I couldnt lose sight of my kids and how me being here in any form had to be better then not at all for them. I can truly and honestly say that I have had Kevorkian moments and this is merely what I have accostumed myself to calling those days of pain that I was so undertreated,not treated really,and the pain was in reality day after day more then any human should have had to bear in a world where medicines exists in abundance but becuase of the fears and the governing hands make it easier to become president then to obtain adequate pain management without first exhausting all other resources even when some of those can cause more harm then relief.
 
Well I am glad I came here to tell a story and more glad that others are coming here to share theirs for I dont think any of us ever really get to that place of total acceptance without slipping back from time to time and needing to be reminded of the blessings we do have in our lives and it is merely a learning experience to rearrange our way of thinking about what our purpose here is was really all about.
 
I lived for my job,it was who I was from the begining, I knew as a child I wanted to be in medicine and although a Nurse I did not turn into as I figured, I needed more intense situations that erupted in the emergency fields,re:my choice of paramedics,I lived for it,it wasnt just a job,it was virtually who I was every minute of every day until I got hurt. In the end all the job was in relaity was helping someone survive and isnt this what these forums are about? Survival? Breathing life back into a lost soul,a shoulder or arm to lean on, a voice in the darkness when fear and uncertainy overwelms some?
 
I will be back with more to share and look forward reading and learning more from all who come here and bring their stories as well. I hope that this becomes a place to learn and heal and that each of us finds something to take with us when we sign off each time.
 
OO I am sorry your having such a time with the sciatica and I truly hope you get some relief soon as it seems to be the most difficult of our pains to treat effectively. Please if you have not sought advice from your Doc about this do so soon as it usually only gets worse before it gets better. Sorry to note.
 
 
 
 


2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!

Post Edited (Ruth Thomas) : 2/23/2008 8:00:44 PM (GMT-7)


notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 2/24/2008 2:04 AM (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! eyes   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.

 


2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/24/2008 12:34 PM (GMT -7)   
As usual, Ruth, you touched on yet another significant aspect of what we have to contend with - the changes from side effects of meds that, unfortunately, we can't do without. Catch 22.

Before I took a bad fall in 2004, I had been working to age in a healthy way, and was a believer in integrative medicine, and took only the minimal amount of meds needed. Mostly some advil or excedrin prn. Maybe an antibiotic for a bad sinus infection once every few years. The only chronic condition I have had is a seizure disorder (since age 14) so I've been on anti-convulsants for that. The seizure issues were all well-controlled, at least until I had to start mixing all these other meds. What strikes me is that my kitchen counter is now half full of pill bottles. The prescription and yes, the Super B complex, Omega 3's, etc, etc, etc. And of course a couple of containers to deal with sinus drainage. I have a small kitchen so barely have room for food on the counter anymore, and if I put the bottles somewhere out of sight I'd probably forget them until I was in horrible pain! As I contemplate having to maybe live with my cousin, and move into only her small, spare bedroom, all I can envision is being surrounded by pills and stimulators and various medical appliances and that's exactly what life has become. I would like a space that is soothing, a place to relax, but I will no longer have that if I have to move and I likely will have to somewhere in the coming months. My cousin is being very generous to offer her second bedroom - which is only in a small 2 bedroom apartment, but it will mean even more losses, to have to give up EVERYTHING almost all at once. But that's yet another topic, right?

You mentioned the steps, and I'm reluctant to be more specific because on this board I really want to be a person, not a professional, but the psychological piece of this is what I've done for 30 years. Elisabeth Kubler Ross' stages have been so misused, and people start to think they have to go through some "steps" and get to a certain place, or there's something wrong with them. Even expanding her steps into 10, one has to be careful. The real grief experts will tell you it's more like phases we move in and out of, and that's what some of your posts have even indicated. We move back and forth, through arenas which may often lack clarity and be muddled, overlaping. I think it's better to view it that way then try to move through a series of steps. And not everyone goes through every "step" or phase. But understanding this ongoing process, and the various components that MAY be a part of it, can be helpful for us and caregivers.

One concept that I've found useful is one call Radical Acceptance. It actually stems from eastern spiritual thinking, combined with cognitive behavioral strategies. It's the best description of what I thnk truly occurs. Marsha Linehan developed it to deal with serious mental illness, but it's also useful in making some peace with anything in life which happens to us that's unfair, unjust. And basically what she describes is a process that occurs daily, over and over again. An acceptance that is not only cognitive, but occurs at physical, emotional and spiritual levels. And that it likely never ends. That we may just get better at making it a part of our lives, sort of a one-day-at-a-time approach. Mostly I think we tend to view acceptance as only a cognitive, or thought process, but it goes much, much deeper. Down to our bones, literally. Especially for those of us with chronic physical illnesses. I don't know if this makes sense or is helpful, but it's just what's coming out at the moment!

Obtuse1
Regular Member


Date Joined Feb 2007
Total Posts : 114
   Posted 2/24/2008 1:00 PM (GMT -7)   
Wonderful stuff here! As a former mental health professional I strongly agree with what you said (PALady) about the misuse of Kubler Ross's (KR)paradigm. From my own work with sexually abused children, various troubled and troubling children/youth over the years, I see these stages of grief as sort of like ripples on a lake -- sometimes one pebble's drop into the water is all you see; but throw a handful -- and one large rock -- and watch the patterns made by the ripples, they appear chaotic, but scientists will say they see how they all overlap;

The KR phases are indeed like thatIMHO :(taking off my clinical hat now & speaking from my own reality :} ) it's possible to be in several of these phases all at the same time, to re-enter the so-called first phase long after the loss, and just when you thought you'd 'broken through' it's like day one....sorry I'm not clear, but I can use as excuse that the sciatica and now the neuropathy are kicking my butt today so my focus is...well, not.

Regardless, I am loving this thread and encourage more to share their journey. The sharing might be good for the soul of the speaker -- and helpful or even comforting to the listeners. I will try to contribute more when the smoke clears here :} OO
[2}Dx: Post Spinal Fusion chronic pain since 1984;Polyneuropathy;Meniere's Disease, Left ear deafness & severe tinnitus on both sides, Left; Intmt Anhedonic depression;
Hx,Meds: donthearishoutyou.com/blog/


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/24/2008 1:59 PM (GMT -7)   
OO your post reminded me that our physical synptoms force us into that back and forth movement. That we never can truly stay in a balanced state. Sometimes I'll find my mind thinking oh, wow, the pain is a little less now - maybe about a 3 or 4 insteady of 7 or 8 (and those pain scales are another story!), but I'll think hey, maybe it'll stay like this! Maybe I'm better! And then another voice kicks in and say hey, schmuck, you just took percocet, neurontin and valium - of course the pain is a little better! But the problem is not fixed. How can we NOT move back and forth and all over the map when we have these ever-changing physical symptoms to manage?

So rest for now, OO, and we know you'll be back to contribute when things calm down. We all understand, that's for sure.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/24/2008 2:40 PM (GMT -7)   
Just wanted to add that I love OO's description of the process using pebbles and ripples and rocks. I do think that's a lot of what it's like. In 12 step recovery programs they say recovery is a process, not an event, and I think the same is true of acceptance. The more I ponder it, the more I think what's going on in this thread IS acceptance. We each move back and forth, in and out and hopefully help ourselves and others creep forward in our process.

Ruth - don't let what OO and I said about "steps" discourage you from adding what's been helpful to you and may be to others. It really does help for people to see things they may be going through, and identify them as a "normal" part of our struggle. I just think it's important we view the process more like what OO's described, so no one feels they have to be on a certain step, complete a step, etc. and something's wrong with them if they don't. Denial can actually be a helpful coping strategy, but I've written way more than enough for now!!

notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 2/26/2008 2:47 AM (GMT -7)   

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!


2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!


notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 2/26/2008 10:57 AM (GMT -7)   

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.

 


2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!


notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 2/27/2008 12:57 AM (GMT -7)   

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.


2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!


notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 2/28/2008 1:00 AM (GMT -7)   
Gramps what happened to this bill this bill the first time around?
I might add the numbers are astounding but not surpsrising in the least.
Are you familiar with the prescribing changes in C-2 meds and it looks as though alot of Docs are NOT going to take advantage of their ability to do this?
A big part of the point in changing that schedule of prescribing was to lower out of pocket expense for those who were struggling to pay a monthly fee,co-pay or the expense of getting to the office once a month. I know especially here in the south where I live alot of folks have to drive a long distance to get to a pain clinic that will prescribe since the Eastern mountains are pretty much nile for doing so due to the numerous problems with abuse and diversion.
Do you think there is anyway to change these Docs way of thinking here? The remarks I have ranged from fear of the xtra scripts being changed,being filled too soon,getting stolen before they can be filled,all legitimate concerns but all also have ways of preventing occurances.
2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/29/2008 12:15 PM (GMT -7)   
I wanted to write a longer post to keep this thread going, but I'm afraid it'll disappear into cyberspace if I do, as I'm having trouble accessing the site today for whatever reason.

I do want to say that each post and story has truly moved me, especially learning more details about Gramps and Ruth. Ruth, you showed such courage and strength facing all your challenges! I know each of us has our challenges, but I never had to struggle with children....although being alone now makes things so much worse.

I'm going to try to post this for now and see if I get lucky! I'll try another post later, as I had a dream last night I really wanted to share as it's so much about grieving. But I want to know the site is back to normal (or my computer is) before I do that!

notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 3/1/2008 11:58 AM (GMT -7)   
Looking forward to hearing about your dream!
 
I enjoy reading also and hope others will post some as well.
2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!


Joan M
Veteran Member


Date Joined Jan 2006
Total Posts : 1978
   Posted 3/3/2008 3:23 PM (GMT -7)   
Gramps...I know you from the asthma & allergies forum. The same thing happened to me! A podiatrist screwed up my feet but they did give me SSD right away. I am very upset with the medical establishment as I see they are pushing diabetic medicine now to people who are not diabetic. I also believe that the overuse of bronchodillators can cause GERD. As far as the government is concerned, the big corporations are running the entire world.

I was quite placid and "well integrated" with my mess until I came down with the shingles. It is such a strange pain that it is very difficult to "listen to". I have noticed that my patience is very low since I came down with it.

PALady can you share more of this radical acceptance and healing concept. Thank you all. You really do make me feel slightly sane.

Joan M
Veteran Member


Date Joined Jan 2006
Total Posts : 1978
   Posted 3/4/2008 6:43 AM (GMT -7)   
you too gramps, I think of you as a friend

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/4/2008 12:32 PM (GMT -7)   
Sorry I've let this thread slip. I've been so tired lately that posting anything but brief replies seemed like too much. But I will write about that dream one of these days when the spirit is willing. And I'll try to post more details about Radical Acceptance for you Joan.

I still try to work a few - like 5 or 6 hours - a week, and only the people on this board would understand what a drain it is to even get dressed and go into work for a couple of hours. I have to juggle all my meds just right. I think this is also part of my struggle with denial and acceptance, and I don't think it's always bad. I still don't know the answer to the question just how much am I capable of? I believe I can still push myself to work a few hours a week, and that helps in many ways, as I still feel useful, but it hurts me financially with all the programs, but I won't go into that. Want to try to keep this thread focused on more personal stuff.

More later....and my thanks to all of you for being here!

notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 3/5/2008 4:08 AM (GMT -7)   
PAL,it is good that you are still trying to do as much as you can and I certainly know how difficult that is to do when letting go is much easier.
 
I have far too many of those days when getting dressed just seems far more then I can handle, I use to be one of those folks who took baths daily and sometimes two and anymore if I can get my behind in there a few times a week it is a miracle and I hate that! The entire process of showering is overwhelming some days. I get discouraged and wonder what in the world am I going to do in 10 years?
 
Needless to say that is only one facet of my life that sometimes makes me ask myself why I keep getting up each day. I use to cook some really great meals and loved to see the kids enjoying it and now we mostly eat out as not only is standing at the stove cooking for an hour far more then I can handle the after clean-up is really out of the question!
 
I stayed active and loved hiking and camping and wondering around museums and all that is a memory these days. I have had to learn to take my pleasure elsewhere, so is it any wonder we get discouraged on a daily basis and I do mean daily at least for me and each time I attempt the thought of doing anything that is going to require a great deal of energy I usually have to cave in and change the thinking.
 
I have had my grandaughter whom is 3 this week as she has had the flu and couldnt go to daycare and I tell you what,my house is a disaster,my dishes await in the sink,I have barely gotten to putting on clothes at all and a good thing I wear PJs or I would be answering the door in a gown everyday! I love her beyond words and would not or could not even think of her having to go to a daycare when she felt so bad but it has really really taken its toll on me.
 
I am literally wore out! As you have most likely noticed by now most of my posts are in the wee hours of morning and usually you wont see me here during daylighthours and this comes from working 25 years on nightshift and no matter what I have tried I cannot break that habit of wondering around when the rest of the world sleeps!
 
Well 3 year olds sleep all night and go all day and I am usually napping thru out the day and this week she has not let me do that so I am sorely lacking in sleep,dont sleep more then 4-5 hours in 24 to begin with and havent gotten that this week!
 
Oh I fell asleep with her the other afternoon and she got up without waking me and got the markers,permenant kind I might add and prodeeded to apply " make-up" with them and then she thought I needed a new design on my t-shirt which she did for me and so you can imagine how I felt taking her to the Doc for follow-up yesterday with all of these wonderful eyeshadows and lip stick she had applied to herself. I felt like an idiot!
 
You cannot turn your back on one for a second! So here I am so tired I feel like crying,hurting in more places then I can imagine and facing yet another few days until my daughter is off the weekend to take her home and hoping she is better next week.
 
I did suggest that "Mom" come down to stay the night tonight to see her and spend some time with her and give Memaw a break for a few hours as I dont think I can get thru another bath night and dinner!
 
These are the things I hate about where my life has gone as I should certainly be able to handle a 3 year old without caving in after 4 days.
 
Thanks for the rant and hoping you all get some relief even only for a moment.
2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/6/2008 6:42 PM (GMT -7)   
A little more about Radical Acceptance for Joan or anyone else who might be interested.

First, let me say I didn't develop the concept, but learned about it from a colleague. You can do a google search and come up with some books (probably also available at your library) for the concept, and Dr. Marsha Linehan. As I said, it's mostly been proposed to help deal with serious mental illness, but I found it useful for myself in trying to "accept" chronic pain, and all the changes and losses it continues to present. One of the important things is that in this thinking pain is differentiated from suffering, as is viewed in eastern spiritual traditions. Pain (physical, emotional, spiritual, etc.) is seen as a necessary part of life; suffering is not, and is more related to how we interpret pain. I hope no one reads that to me that we should be suffering from pain, or that I think it's ok, but it's about accepting what is. Here is some information from a handout I have.

"RADICAL ACCEPTANCE basics:

Freedom from suffering requires ACCEPTANCE from deep within of what is. Let yourself go completely with what is. Let go of fighting reality.

ACCEPTANCE is the only way out of hell.

Pain creates suffering only when you refuse to ACCEPT the pain.

Deciding to tolerate the moment is ACCEPTANCE.

ACCEPTANCE is acknowledging what is.

To ACCEPT something is not the same as judging it as good. (I think this part is important to remember)

In order to accept, she details a lot of things, one of which is called TURNING THE MIND:

Acceptance of reality as it is requires an act of CHOICE. It is like coming to a fork in the road. You have to turn your mind towards the acceptance road and away from the "rejecting reality" road.

You have to make an inner COMMITMENT to accept.

The COMMITMENT to accept does not itself equal acceptance. It just turns you toward the path. But it is the first step.

You have to turn your mind and commit to acceptance OVER AND OVER AND OVER again. Sometimes, you have to make the commitment many times in the space of a few minutes."

That's only some very brief info. about the concept, and I should say I think it can be easily misinterpreted. I'm no expert; I just find it useful as I still know there's a part of me that wants to fight 'what is". Many of you are further along this road than I am.

notnu2cp
Regular Member


Date Joined Feb 2008
Total Posts : 138
   Posted 3/7/2008 1:28 AM (GMT -7)   

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.


2 knee replacements & a hip.
spondylosis at L-4,5 & S1
arthritis,sciatica all that being a CPer entails!
 
If you stumble make it part of the dance!


Joan M
Veteran Member


Date Joined Jan 2006
Total Posts : 1978
   Posted 3/9/2008 1:04 PM (GMT -7)   
years ago when I came down with allergic asthma and was sneezing my head off...I just could not believe this was happening to me. It took me a long while to realize that acceptance was my way out...then I could do percentages. If I kept everything dust free---what percentage of relief could I find. If I took a walk outside when the weather was ok, what percentage of relief could I find. If I got my allergy shots every week, what percentage of relief could I find.

now i am trying to listen to my body but must first accept that i have some kind of nerve damage. this is very strange and unusual pain for me and am hoping to figure it out (win percentages) at some point.

well anyway i still have allergies and asthma and now i guess i am stuck with some kind of nerve damage but this problem can be minimized to an extent.

meanwhile sometimes i think i'm going nuts...another health problem...who needs it...not me.
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