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Posted 1/27/2010 5:36 AM (GMT 0)
I mentioned in a post this last week that there was a subject I was looking at and here it is. There are some of us here that have been dealing with CP for years and others are just starting their journey. There are clubs and organizations that the longer you are a member, the higher status you earn. Unfortunately, this is not even close to the identity stealing CP club. Well, maybe it is a club that any of us chose to join but members we are.

The longer we are members, it seems that the more our bodies are effcted. CP has proven to me that the hand bone can be connected to the foot bone, the leg bone connected to the arm bone. They all seem to be a pain in the neck or butt,  take your pick. We seem to start out with pain in one area or location and end up with pain in numerous places, some we did not even know existed. Then if that is not enough, the cure or treatment takes its toll and opens up even more areas for the life changing and controling pain to attcak. We end up wondering how it can attack with such vengence but attack it does. I am tired of this insidious disease spreading like gangrene but end up frustrated because I am faced with the reality that I have less control then I thought I had. But regardless how frustrated I get, I refuse to quit fighting. I spoke to the students today on contending for the faith and found myself thinking not just in religious terms but also in terms of survival in the seemingly unfair journey of life. The more we are attcked, the more we must contend or fight. What choice do we have.

Posted 1/27/2010 6:11 AM (GMT 0)
Fatherjohn,
Here you go again with one of those pensive posts. I'm not complaining - at least I think my computer is going to allow me to respond tonight. It's pathetic when you can't even control the machines you own, on top of everything else!

I wish it was "just" our bodies that CP ravaged. I mean, that's enough to rob from us, right? The ability to do certain things without pain, and the inability to do some things at all. But CP is like some insidious virus that spreads wildly through every area of our life, the longer we're in this "club". Of course, psychologically and emotionally we're affected, mostly through depression and anxiety. Anger and frustration with a health care system and providers that fails us repeatedly - and that's even when there are things that could help, like, heaven forbid, narcotic medications. Things that could at least keep life from slowly slipping through our fingers, we have to beg for. Then there's the impact on our jobs, and those of us who have careers we really love and WANT to continue doing but either have to bow out or are kicked out by employers who don't want us around. That of course leads down the road to financial poverty, and yes, when it gets down to that level money does matter.

We lose family. We lose friends. And our health often continues on a downhill slide I'm convinced is not only due to our primary diagnosis, but the long term stress of it all. Chronic inflammation in the body is not a good thing.

What choice do we have? Well, as you say, the more we're attacked the more we apparently have to fight, but at what point does it become too exhausting. Too overwhelming.

I know I mentioned the boxing analogy before, and one of your closing words reminds me of a line from a movie most people here won't even remember - On The Waterfront. "I coulda been a contender." Makes me wonder how my life might have been different without all this. But that's kind of a pointless waste of even more time.

I just wish I had some time, energy, and money (not a lot of either, I'm not being greedy) to do something that I enjoyed and could love to do without the main focus of my life being all the ramifications of CP.

PaLady
Posted 1/27/2010 6:42 AM (GMT 0)
Good topic for thought and reflection!

I agree fatherjohn, we don't have any other choice but to fight. And I think that's one reason most of us came here. We want to fight but might not know how or have the right 'ammunition' to do a good job. But together we can fight the stigma we are stuck with, we can fight for better pain control from doctors who are too chicken to do their job properly; we can fight to let the world know that we are not lazy or slackers. Who in their right mind would spend the time and money that we do just for attention or any other reason some folks come up with.

But one thing we don't have to fight for is our dignity. We all have it for the taking. It's right in front of us each day when we awake. Hold you head up high! We all have much more going for us that the majority of folks out there. We know how to fight and win! We are experts!! Think of how wimpy the people around you are. A splinter in their finger and they want to go to the ER...lol And they fault US for complaining of pain now and then? Don't even go there!

We are strong and very worthwhile people who know how to kick life in the butt when it tries to get us down. So always hold your head up proud and don't take cr*p for anyone because you have CP. We know how to appreciate life!

Chutzie
Posted 1/27/2010 7:26 AM (GMT 0)
 

   Dear Father John,

 

     *Warm huggs* I am glad you stopped by. I had often wondered how you were doing. Did you get a chance to get to your doctor to talk about the new pain? I sure hope so. How are you holding up?

 

       Your thread is very thought provoking. It is hard to fathom at times, the ways we are all tested and pushed to our very limits. You say "what choice do we have" and all I can think is how beautiful is it that you give everyone you meet the "choice" to have a better life. The choice to take a different path in life for good or bad. The same things that were taken from you, you then give to others.  *huggs* In another forum I stumbled across the most heart warming story and it reminds me of you.

 

~~~> https://www.healingwell.com/community/default.aspx?f=38&m=1702155

   I think you are the water.  You are always there, anytime, no matter the circumstances in you own life, always there for anyone who needs help. Changing the world one stepp, one person, at a time. So, when you say "what choice do we have" I think to myself, "None. You already made the choice to rise above all the pain and hurt and anguish long ago." Not for yourself, but for all those around you.

 

     I am afraid I need to end this here or I will chat endlessly... it is rather late here in New Mexico. But, I do hope you have a good evening and find a momet or two to relax.

 

*huggs*

   dani

  

Posted 1/27/2010 9:59 AM (GMT 0)
PAlady, we have discussed the part before about all the areas that are effected and we have to contend or become contenders in neach area as we are confronted by the consuming agent.

Chutz, I agree that our dignity is there and at times we must fight to keep it as others around us make judgemental decisions about our apparent weakness which is actually a weakness turned to strength because we decided not to not let us take away what it desired.

Dani, what a great illustration in the story. Thank you for your kindness as it is a difficult night for various reasons and the thought and compassion you shared eased the feeling of depression that made itself a guest.

Posted 1/27/2010 12:26 PM (GMT 0)
Fj, PA, Chutz & Dani,
Wow! Too deep for me to think about this morning> my coffee hasn't kicked in yet! I'll reread this later and try to comprehend it. All I can say now is "I could have been a contender but I still have your backs!!"

Hugz & stuff!

Pete
Posted 1/28/2010 12:17 AM (GMT 0)
Hi FatherJohn,

I am really concerned for you at the moment, I love all these thought provoking things you keep posting but I worry what is going on for you to start this rush, this waterfall of insight. You seem so incredibly sad. I know you are struggling with your pain, obviously upset with your workplace. I can tell you're not being cared for very well by your current team of medical staff.

You need your very own FJ to look after you right now. Is there anyone you can talk to face to face about your problems? You seem so overwhelmed with everything. I wish I could be there to just listen to you, provide that shoulder to lean on.

I don't mean to intrude and I hope I haven't upset you further, its so hard online but I'm really worried about you.

I also struggle with mixed emotions right now as my own pain has spread to effect more of my body, I worry where it will go next, what my options are, how I will cope with work when I start again, how these new pain meds will affect me, How I now define myself, what I can do to help myself, finding the energy to help myself, how do I admit to my workplace I need more help...will that affect my employability? Do I admit I'm now on opiates? Somehow through it all I still feel positive, Skeye said to me take it a small step at a time, I keep doing that, bite sized pieces, don't look too far ahead.

Water is a beautiful analogy, Dani, forever changing, life giving, soothing. I send you my biggest warmest wishes, Father John, golitho

Posted 1/28/2010 2:48 AM (GMT 0)
Fatherjohn


I have the same sense about you as golitho, but I think I understand all to well what you are trying to convey and what you are feeling. Some times you can just about feel overwhelmed by it all. I can identify with everything PALady said! And after our bodies are ravaged by CP and our mind and emotions have had more than enough, in the rubble lays our dignity maybe beat up abit maybe even bruised, but none the less intact. Chutzie is right we do have that. And no CP or anything else, can ever take that away from us, we can only lose it on our own!



Dani what a insightful young woman you are! Thank-You for posting that link!



I have more thoughts about this thread fatherjohn but not now



White Beard
Posted 1/29/2010 7:50 AM (GMT 0)
Golitho and WB, Thanks for the concern. Yes the rubber band is wrapped pretty tight but I am hanging in there. My work place has not been the most pleasant of places lately. I have backed off on my hours and the fallout has taken a toll on my students, or their students. We have lost 6 in the last two weeks. I have 2 more that might be gone by Monday.  These are students that I recruited and have poured into. Two other directors have left as well as they could take the stress no more. When they took over and dropped my salary, they made some other financial decisions and now in a months time we are in financial disatser and I am working diligently to protect my staff. No I have not been able to make a face to face with a doctor and still have 3 weeks to go to make that. The days end with a night long battle with pain that is not easy. I lay, roll, twist and saute on a heating pad for several hours a night trying to get enough relief to make it to sleep.  But the pain has spread and I wait patiently. We choose which battles we will fight as fighting too many and the wrong ones can weigh you down and take the stregth needed to win the ones most important. The lonliness creeps in and the sea of depression rises.  It would be great to have a group session as the sea rises but like most people, the sea never rises at the opportune time. Even though the rubder band is showing signs of strains, I keep getting it backed off one turn or two to keep it from letting go. I hope you can find meaning in what I am saying without the aid of a gecoder ring.
Posted 1/29/2010 10:53 PM (GMT 0)
I always wonder why people need to change things that are working well! How terrible to be working there seeing all your hard work and input being put to ribbons, students leaving, staff leaving?

Are they trying to close it down? Funding cuts are affecting everywhere but to destroy something that was working well seems so silly to me. What do I know? No wonder you're depressed.

Pain is such an overwhelming quantity all by itself without all this other stuff in your life to deal with too. The stress must be so awful. How about a hot spa or something gentle? Would that help? Meditation tapes or even coffee with a friend. I know how insular pain makes me feel, sort of locked into my own little world at times.

I'm still worried about you, golitho
Posted 1/30/2010 1:45 AM (GMT 0)
Fatherjohn,
I have to add my name to the list of those worried about you. I'm not sure what to say other than I'm here to listen along with the others.

Do you have a therapist that you might be able to talk with as you go through this tremendous change in your life. I know you're trying to protect staff, and take care of the students, but I really have this gut feeling you need another lifeline for yourself as you try to maintain through all the chaos. Seeing so much of what you've worked to build break into pieces has to make your heart ache. I wish there was more I could say or do.

I care.

((((((((((((Fatherjohn)))))))))))))

PaLady
Posted 1/30/2010 3:45 AM (GMT 0)
PAlady, I am afraid that a therapist would have me committed. Just kidding. I have a few pastor friends that I talk to and they also are  very concerned about what is going on with the school. I still work hard every day and try my best to do all I can for the students. I can only protect them so far and I am trying to keep that in the right prospective.

Golitho, the hot tub idea sounds great. I have been looking at them as the last time I went to the coast, I soaked in a hot tub every night and slept better. It is hard to say if it was the hot tub or the lower stress. Since I am also looking at possible job options, I am not sure I want to make a purchase right now. I don't get in to see my PCP for several more weeks. I already know that he will not be able to do much but will support the idea of a new PMS. Again, my problem will be finding one that will take my insurance. My PCP recommended one but the practice does not prescribe any meds and does not do surgeries or deal with the SCS. I am not sure what good they would do me. Thus, my recent thread "Why do we go to the doctor".

I was just sharing with my wife that I feel that I am back to the point before I had my fusion surgery with the loss of sleep due to the pain. Whatever level the pain is on the pain scale, it does not seem higher, just more of it. The SCS only handles so much. With the normal high tolerance to pain, I know I have to do something. Someone asked me the other day how I was doing and I responded, like Noah, I am still afloat but life stinks sometimes (all the animals in the Ark analogy). Blessings

Posted 1/30/2010 6:08 AM (GMT 0)
fatherjohn

I understand your problem with pain, when you had your SCS put in did they not also keep you on pain meds? As far as I know about the SCS they never completely replace all your pain meds. And most people that have them still take a certain amount of oral pain meds to keep their pain manageable and under control! They didn't do that with you? Or am I just not up-to-date or am I missing something?

The stress you must be under must be unreal, fatherjohn have you thought about going to a counselor? I don't mean just talking with your friends or other pastors, although I am sure that, that helps you alot, but I too am worried about you! And with your pain issues and then add to it the pressures of your job and all the added stress that you are having to endure, seeing a counselor I think might be very helpful to you! I go to a counselor every two weeks, I honestly would be a basket case other wise with what is going on in my life with this divorce! And even now going to counseling I sometimes have a very very difficult time of it! it is people from this forum that have been the greatest comfort and help to me! fatherjohn I can only imagine how rough all this must be on you, I can tell from your post that you are having a very very dificult time, and I must admit it does worry me abit! You know we are all here for you and we care about you deeply so please take care of yourself. If things seem to be getting to be overwhelming please seek out help!

I wish you well my friend!

White Beard
Posted 1/30/2010 6:45 AM (GMT 0)
WB, thanks for the concern. Yes I am on pain meds as well as the SCS. That is why I am getting back in to the dr. The pain meds are not helping at this point. I know that there can be several reasons: tolerance, stress, problems with the hardware from fusion, other levels next to fusion etc. I run my SCS 24 hours a day. 

I am facing a reality of my ability to keep working as I have been. There was a reason I was labled totally and permanently disabled. I am not able to file for SSD or SSI and thus have been trying to hang in there for a few more years as I still try to be the provider for the family. The fact that my youngest is getting close to being 19 helps some but financially not working is not an option. I am trying to scale back and looking into a job change to assist but until then, we hang in there. As I said, thanks for the support and HW helps all of us.

Posted 1/30/2010 4:38 PM (GMT 0)
 

   Dear Father John,

 

      Good morning *huggs* It is always good to hear from you. As I was reading your post I couldnt help but wonder how I would feel if strangers were to come and slowly strip away my lifes work piece by piece. I just cannot fathom it. I havnt a clue how you are able to withstand that kind of "attack" on you and your students. I wish there were some way to make it all stop. I havnt anything useful to offer you. But, please know you and your "student family" are in our hearts and prayers here.

 

      I am oh so glad you will be making it to the  doctor, eventually. Though the amount of apprehension you must be feeling about starting with an entirely new PM system must be quite a burdon. Not to even mention the amount of time and effort it will take to "get in and begin new assessment". Argh! Frustraiting to say the least! Add in the out of state WC and ...... gosh. shakehead  But, I cannot help but remember how you were treated over the summer by your old doctor... *shiver* I am glad you wont be seeing them ever again. This new change in care givers, thou likely time consuming and frustraiting, could be a blessing in disguise.

 

      Looking for a new position with all of this going on in the back ground will be very hard to do! Physically and emotionally taxing! You never cease to amaze me. Here you are, so much uncertianty, adversity and still. still! You are looking towards the future and planning ahead for the better tomorrow. Wow! I do hope that a more relaxing, yet equally satisfying job can be found. It would take so much burdon from your shoulders were one to be found.

 

      I have to end this here or I will never start my day! With such good company it is hard to leave. But, I do hope you can find a few moments of rest with your heating pad (I sure hope it has an auto shut off timer). Please take care. Stay strong!

 

*hugg*

  dani

 

Posted 1/30/2010 5:38 PM (GMT 0)
FJ I am really detecting alot from your tone of this post. I think WhiteBeard is right, perhaps you should consider getting some professional counseling. Its always easier to help someone else rather than ourselves, but I think this is one time you should consider you. Its great having the pastors to speak with & such, nut it's just not the same. I had a wonderful psychologist and I would still be seeing her if I had insurance that would pay for it. I probably need it more so now for other areas and aspects of my life. I just don't have the money to shell out of pocket. As it is now I am paying a bundle on medical bills not paid by Medicare & my secondary ins. My secondary ins sucks because unless the balance after Medicare pays is a certain amt they don't pay a dime. Well, guess what, I now owe every Tom, Dick, Harry, Jane & Oscar that you can think of and a few more. The employer took out a separate policy on me this year since hubby turned 65 they are off the hook on paying for his ins. he now has Medicare. This policy is not worth ther paper its written on. Its costing over $500 a month and the way I see it, unless I am hospitalized with a bill so high that not even God can pay they will not be out a dime on me. Office calls are on Medicare & me. I am really disgusted because we had no clue about this change and no booklet of any kind has been furnished to us. Sorry, I am getting off track here

But, anyway, please consider seeing a pro, you really need someone to totally unload on that is unabiased and can make some good suggestions. Take care, we are all really worried about you friend.
Posted 1/30/2010 9:29 PM (GMT 0)
Greetings FatherJohn,

I understand the struggle you're talking about; I have no suggestions for you as I can see that both you and others have presented pretty much every option I could have thought of.

It's very difficult to feel that I am not all me. My situation is very different from yours in that I have short term disability and good medical care (I work for a huge multinational corporation). I do stay in touch with my coworkers and they, in turn, put a tremendous effort into not disturbing my peace with the strains of the workplace dramas. I know they are there, the world isn't going to stop being overwhelming just because I'm sitting at home trying to heal.

I suffer the slings and arrows of knowing that my body is failing me and that I'll never be quite the smart and agile woman I was just a few short years ago. I have days where I literally weep, filled with the knowledge that I am letting others down because my body is deteriorating so rapidly. It seems to be worse, in some ways, because other than appearing a bit thinner and wan, there is no external evidence of my decline.

I have nothing but my companionship and ears (metaphorically speaking) to offer you.

wanda
Posted 2/1/2010 2:02 AM (GMT 0)
Wanda

That is what makes Chronic Pain so insidious, from the outside, you appear for the most part normal and OK. It is the inside, that CP takes its toll! I sense from your post that it has already deeply wounded you! I see the sadness in your words! We offer one another our suppoprt and a compassionate listening ear, but knowing full well that the persons pain will still be there! But it is all we have to offer, and we hope, I hope! that, that is in some small way, is enough, to make a difference! Please know that although your pain and circumstances might be different, as all of ours are, you are not alone, all of us here on this forum are here to help each other as much as we can. I would like to think that makes a difference, I know that for me, it has! But I can't speak for others! I do wish you well though, and hope that your pain eases and you have better days ahead!

White Beard
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