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Dealing with the Big Disappointments

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Posted 5/16/2009 9:30 AM (GMT 0)
It has been awhile since I started a thread like this. I have been reading and mentally noting how many of us get our hopes up that a new doctor, a new medication or combination of meds, a surgery, an implant, applying for disability, or a list of other things will help relieve or even take our pain away or even help us deal with the pain and all that goes with it. Then the disappointment comes. It does not turn out like we hoped. We get turned down, we have to jump through more hoops, we actually seem to be worse off than when we started, or we feel like we are out of options. As we all know, depression often accompanies CP and when these disappointments come, it makes the depression worse. I know that there are professionals that help people through these times but what I wanted to discuss is what do we do to help deal with these disappointments? Do we build  a safety net around us just in case something does not work? Do we extend ourselves so far just hoping/wanting relief that we take a big nose dive when it does not go as planned? I know that being able to talk openly on this forum is a great help as is consulting professionals. I just thought some of us can glean from others and find ways to help us through or even protect us up front.

I know that the nerve stim. that am dealing with is one more shot at helping to manage my pain. I listened closely when my PMS told me that if this works, the best that I can expect is a 50% reduction in pain which would reduce my meds by 50%. I know that the pain would not be taken away but it would be masked and I would be able to do more without constantly dealing with the pain. If I did not think this is a good shot, I would not do it. Now I wait as the trial is about over and the date is set for the implant. The reality hit me as I went in and had them adjust the stim yesterday in the middle of the trial and my PMS asked me to cut my meds and see what the response was. I guess I will see.   

Posted 5/16/2009 10:10 AM (GMT 0)

I truly get where your coming from. After all the years of trial and errors I have gone back to my Mothers way of thinking!

She told us throughout or lives that if we expect nothing then we are never disappointed. It works for me. By keeping my expectations to a minimum I dont seem to suffer the great let downs anylonger.

Anything I deem as a good result from a drug or therapy comes as a surprise and makes my day you might say but without the huge expectations, I dont let myself get excited, makes the good results that much more thrilling and the bad results just another trial and error response.

Probably not the most healthy of mental issue thinking,not allowing yourself to expect things but it was getting real tiring always being on the downside of life,seeing only the losing ends,and not the gaining as they were so few and far between they were taking a backseat to the let downs and my mental status was suffering greatly and therefore aggravating my pain issues more.

Hoping that something works but living Murphy's Law with me.

Posted 5/16/2009 1:43 PM (GMT 0)
It's hard to have great expectations, when looking back on last year (for me) and realizing how much I paid
into procedures that didn't work, and all because the big bad insurance companies set these bars or hoops
for us to jump through and to find out the procedures that would help go to the "cash paying Rich" people
cause insurance won't pay for them and yet they are FDA approved......
Botox is now used for chronic low back pain and is supposed to help, yet no insurance, another procedure
is Stryker Discectomy Probe which is supposed to help yet again not covered by insurance, these experimental
procedure classification from insurance is for the "BIRDS"..... These two procedures have been proven to
help so why the "experimental" classification bull.. so hope for me is having to get injection that I know won't
help for more than a few minutes and then I get the price of them, after insurance.. .....
oops so sorry I babbled on and on ...
But it also comes down that if it were not for my Husband, daughter (and the many cats, I've had) I'm not so sure I'd be here,
so I guess hope lies in the strenght of our families...
Posted 5/16/2009 2:12 PM (GMT 0)

My biggest shock came when I realized after the fusion 9 yrs ago that the pain situation was permanent.  I expected to have surgery and in 6 weeks be back to work and life would be good again.  Having worked in the Medical Field all my life thats how it worked, diagnosis, surgery...fixed.  N O T....so along the way in my quest to find the treatment that would work, as soon as I would start the treatment I would believe it was working....after many failed treatments...my husband would remind me to be more realistic in my possible outcome!  At first I thought he was being an AH and bursting my HOPE bubble, but in the end he was right, it was hard for me to admit that another treatment failed!  So, over the last year, I have been very realistic and almost hesitant on what I choose to try (most are not covered by Medicare).  Going into a treatment with, if I get some relief.... it is a successful treatment has saved me that big crash when I realize it didn't work.  I hope I am making sense in my babbling!

I am now experiencing SOME relief from the LDN....still realistic but OH SO HOPEFUL!!

Also, in December when I did a google search and found Healing Well....I found my life preserver in a world where I thought I might drown someday all by myself....THANK YOU ALL and THANK YOU FatherJohn, you always start a thread that gets us thinking!!

XXOO
Patti  

Posted 5/16/2009 2:14 PM (GMT 0)
When I read the first post I knew what I was going to add. But of course Angel8 already posted it!!!!LOL

Some of you already know about my father. So at a young age I learned to expect nothing. I know it sounds negative but I was a child. Over the years I changed it some. I love everything and everyone around me. Its an unconditional love. I never expect anything in return other than hopefully make you smile, easing some pain or just being there.

So if I get something or anything in return thats a plus. I use this view with all doctors, procedures or medications.
Posted 5/17/2009 2:00 AM (GMT 0)
I tried to post here several times but was kicked off but will try again. Patti, I to thought that after fusion surgery I would have great results and get the relief I wanted. I was told 11 years ago when I was injured that the best idea would be waiting to have surgery until I could not stand it any more. I put up with alot and finally made the big decision onlt to end up no better.

Angel, Char and LLPLUV, I think I have posted this before but I will share it again. I teach my students that unmet expectations equals conflict. We are going to have many conflicts in our life time but what is really important is how we resolve the conflict. Some times we are left in conflict and that causes us to be coninually battleing and at times we get wore out because of it. At times then it comes down to what you said LLPLUV, what expectations are we going to have because the less we expect, the less we are facing conflict. Thanks for posting.

Posted 5/17/2009 2:51 AM (GMT 0)
Fatherjohn,
As usual, another thoughtful post - I thank you. I read the title and signed off and came back before reading the thread as I had a hunch it would stir deep thoughts and/or emotions. I was right, although I feel myself wanting to avoid facing them.

Patti's post really hit home for me. I've been thinking a lot about this lately. Every surgery in my life was successful at curing the problem, ending the pain, until the fusion. Like you, FJ, I was told to hold off for surgery yet no one along the way ever told me about how nerves can become permanently damaged. Anyway, it's water under the bridge now.

But i have realized that my inner struggle (definite conflict!) over appying for SSD has been that I have to acknowledge that surgery did not work and is not going to work. It's not going to be like when I had my tonsils out as a child, or my gall bladder removed when I was 19, or even 2 successful carpal tunnel surgeries, which removed the pain immediately. I waited for surgery, but somehow in the back of my mind always figured it would fix the problem, but I'd have to go through the recovery and it was the latter I was avoiding. I honestly thought it would work - or at least partially work. And even as I write this I have not faced it 100%, but I'm working on it. There's really no choice if I want to try to have some kind of future; it just, like everyone here, won't be the future I envisioned. Won't even be close.

That's about all I can handle thinking about for now! But I also loved Patti's description of this site as a "life preserver". Right on!

Thanks to everyone for sharing. For caring. For being here.

PaLady

Post Edited (PAlady) : 5/16/2009 8:54:58 PM (GMT-6)

Posted 5/17/2009 1:56 PM (GMT 0)

((((((((((((((((((((((((((PA Lady))))))))))))))))))))))))))))))))

I so relate to your comment about applying for SSD, when I made the decision to leave my job, I scheduled an appt with SS to file the papers.  The young man who took my info was very kind, I was crying during the interview....it was the worst day of my life, in a nutshell, it made my situation REAL and I was now no longer an idependent person.  Thats how I viewed it at that time!  I was in a deep depression, pain was out of control (still) and DEVASTATED.  That was June 2003.  The day I got the call (12/19/2003) I was sitting in my car on the side of the road, SOBBING and asking God what was I supposed to do, go back to work, rely on my husband for income (after working since 14 this was unacceptable to me) why did this happen to me?  After a long time I pulled myself together, came home and there was a message on the answering machine, I pushed the button and this voice who sounded like an Angel to me.... said this is Gloria from Social Security you have been approved for SSD since August (2 mos from the file date), for some reason your file was missed and we need your bank account info to deposit your 1st 2 checks.....it was a euphoric moment to say the least!  Even though I had to wait 24 months for Medicare, I would be getting a check every month.....we paid into this all our working lives, I never imagined I would collect on it before age 70.....it happened at 49 instead!

Hang in there, you DESERVE SSD!

XXOO
Patti

P.S. sorry I went off the subject a bit!!

Posted 5/17/2009 2:10 PM (GMT 0)

I should have added we ALL DESERVE SSD, when we finally admit to ourselves that working lessens our QUALITY of LIFE!  I know my friends you know what I mean!

XXOO
Patti

Posted 5/17/2009 9:02 PM (GMT 0)
Thank you, Patti for the hug!

Fatherjohn - I woke up this morning thinking of this thread. I was lying in bed and just started to think about how I had laid in that bed after my carpel tunnel surgery in 2004 and the only reason I used one of the pain meds. given to me was because the surgeon had wrapped the bandage too tightly. So when my cousin took me in the next morning to have it changed, there was no more pain. Funny, with all the pain I had from carpel tunnel in both hands, I never got anything strong until after the surgery - and I never needed it. So for a long time I had something - I think maybe tramadol, darvocet, I don't even remember - in my medicine cabinet. Full, unused. I even brought home a sick, bedridden cat (he was 19, and 1 week before my surgery all of a sudden couldn't walk!) and cared for him with one hand wrapped in gloves and held up because I had fresh sutures! I fed him and gave him oral meds and cleaned him as he had to lie on the same pads used in nursing homes and hospitals for incontinence. But my pain was gone. All that was left was to heal, and get my hand strength back, and i knew that would happen. My cat wasn't in pain, but the vet was suggesting euthanizing him, but after about a month of steroids, he slowly started getting back up, walking, eating and getting to his litter box and even jumping on my lap and window sills. I had him for another 9 months before he went downhill again.

But my pain was GONE. Gone. The pain was gone. I laid in bed the night after the bandaging had been loosened and the pain was gone. I thought that would be the case with my back fusion. I know I'm repeating my earlier post, but all I could thing this mornig in bed, as the tears were streaming down, was how the pain was gone after that hand surgery. And how I had so expected the same thing to happen with my back.

I guess I don't know how to deal with the disappointment. I don't even know if the word disappointment covers it. Devastated on some level might be closer.

Oh, Patti how I understand the tears about SSD application. I have so many other things to do now, too, medical stuff that must be done. All with a brain that's not working anywhere near as sharply as it did, and with stamina that fades quickly. But the emotional piece is a heavy weight. I think I need to do a lot of crying. I have to feel what I don't want to feel.

PaLady
Posted 5/17/2009 10:42 PM (GMT 0)

Do it PA Lady, tears are cleansing!! Its okay to admit we aren't strong in all area's of our life especially in our biggest disappointments we have no control over!

Sending you lots of love and hugs,

Patti

Posted 5/17/2009 11:01 PM (GMT 0)
PALady
Your post brings tears to my eyes, I have been on disability quite a while now, I have confronted and faced what you are experiencing now. It is hard to come to grips with! Even now I keep my license current and up to date, I spend the 80 dollars or what ever it is and renew it every time it come due, and I try and keep up to date by reading all the nursing magazines. I still miss it, not as much now as I did, when I first had to go on disability. But it was and is such a loss!
PALady I have read your post, I sense that you are hesitant, about appying for SSD, and now more than ever I understand why! I don't want to sound pushy or uncaring, because that is the furthest thing from my mind, I do care, I care very much, but you do need to get past this and get your SSD applicatiion in. I worry maybe needlessly , but just the same I worry that sometime in the future, you will be in need of SSD and it won't be approved yet! I hope that doesn't happen, but it is a worrisome thought that I have!
Hugs to You ....{{{{{{{{{{{{{{{PALady}}}}}}}}}}}}}}}}}}}
White Beard
Posted 5/18/2009 12:14 AM (GMT 0)
I could not agree with White Beard more, in fact I was one of the first ones urging PA to file because of the not wanting her to possibly lose out on her earnings. I do hope that by waiting as long as she has that it will not affect that part of the claim. But, as you say White Beard get past it and move on, applying for SS is a time consuming process and the longer a person waits in filing the longer it takes. I cannot explain how it made me feel applying, it was like all of a sudden everything was so final. I guess. But bottom line is your $ will not last forever and its time to move on and go forward. It not good just sitting in limbo, SS does enough of that making determinations on claims....Susie
Posted 5/18/2009 1:30 AM (GMT 0)
I sense that applying for SSD has more than one issue attached to it. It could be that you are closing the door on a career or working as you did for some time. It could mean that your life is taking you down a path that you did not want to go down and don't feel you are ready for. It could mean for some a negative feeling of not being productive verse relying on the government. There can be disappointments in just applying as well as knowing that for some getting it approved could take more than one try. Working the hours I work, I would have a difficult time trying to convince someone that I could not. Even if our body does not respond in a way that means we are working does not stop our mind from trying. As I have said before, I am not eligible for SSD although at that magical age can go on Social Security and then on Medicare. i don'rt know what I will feel at that point as I am not sure what some of you are feeling right now. I can only imagine. It is a good thing we have people here that have experienced it and now can help show support for others who are. By the way, I am at work now, here I go again.
Posted 5/18/2009 5:02 AM (GMT 0)
Fatherjohn,
As usual, your post hits the nail on the head in more than one area for me. But I don't want this thread to start focusing on me. I learn from having others share their struggles - past or present - with the topic you presented.

I thought this afternoon how there's a continuum, at least as far as working issues go, and some people are at one end collecting disability and having made peace iwth it. Fatherjohn you represent those people trying to stay working despite the struggle, and maybe the reason for each person to do that varies. I still find myself in the middle. When I ask myself are you SURE you can't work, there's a part of me that wonders if I had the right pain management, the right job....a part of me still doesn't know. And FJ I loved your quote about even if our body doesn't respond it doesn't stop our mind from trying. And that's not always bad. Who knows what's going to happen for you with the stim. (By the way how is that going? I'm sure you'll let us know.)

And also having to stop working isn't the only disappointment. There are so many for all of us.

Uh-oh....rambling machine is starting to turn on! :-)

PaLady
Posted 5/18/2009 5:14 AM (GMT 0)
PAlady, I know that there are times when the disappointments seem to come in groups and bunches. It is not like we just get to handle one at a time. Sometimes they comes and before we get to get over that one another one shows up to keep us from relaxing too much. I have been sharing with my family that I think about retiring (if I could financially) and they are starting to see that I am being serious. That scares them a little because they know me as the energizer bunny, right. Since I am not eligible for disability and have to wait until I am of age for social security I am a few years away. Sometimes too many years and sometimes it seems too close. I know what you mean about the what if? I do that now. What if I left this job, what else could I do? What if ... would I be able to support my wife and still help my kids? What if ... and the list could go on. I do what I can do today as tomorrow has enough trouble of its own. I can imagine that your decision is not easy and as you look at it, there are so many things to take into consideration. I pray that when you make a decision, you feel a peace about it. Blessings!   

Posted 5/18/2009 10:20 AM (GMT 0)
Just a philosophical question. I know this may sound strange, but as we look at the idea of dealing with big disappointments, is it possible that we can see ourselves as one of those disappointments?  
Posted 5/18/2009 12:48 PM (GMT 0)

FatherJohn,

Yes, I've seen myself as a Disappointment.....but not for very long, it was a devastating time for me!  Some how I found the strength to realize I felt this way because of my circumstances!  I had many chats with my closest friends who listened and disagreed with me wholeheartedly.  I began to look at all the good I did over my lifetime and made a list of both positives and negatives.  This worked for me! EVERYDAY I spend time in the morning being grateful for every single thing in my life, for what I have, for what I CAN do and especially for the people in my lives that I love and am loved by.  There is just no way to stay stuck in that emotion if you do this!  Hope this makes sense!

XXOO
Patti

Posted 5/18/2009 12:53 PM (GMT 0)
FatherJohn, You are such a deep thinker.And that is a good thing. If forces us to think about things we don't or can't force our own selves to think about.

For the past couple days, I have been thinking maybe my surgery isn't as successful as I thought it was at first. I've been having alot of pain in my buttocks and hips. At first it was the same on both sides. I just contributed it to the healing process. Now I am seeing that it is focused more on the left side, the side I had so much pain with before the surgery. It is a deep pain. And it feels all too much like nerve pain. I am really starting to believe that it is. The lortab isn't helping that area too much for the past couple days. I guess time will tell if it is indeed the nerve pain or if it is just still healing. All I know for certain is that it hurts bad.

PALady, as I read and reread your posts, tears streaming down my face. I can feel how this has devastated you. Your fusion was supposed to fix the problem just as the other surgeries did. It wasn't supposed to be this way for you. And although it didn't "fix" the problem it sure is a hard one to swallow and just deal with it. You are feeling all the emotions you are feeling. You are devastated about the situation and the outcome. It is very real. And just knowing this and coming to terms with it ,is two different things. It is much easier said than done. It just isn't that easy. I do pray for you. I know that the filing for SSD is hard for you. I do hope that you get the paperwork turned in. It will help you in the long run. You deserve that. I want you to have the security that comes with it. I don't know all the specifics of the amount it would be and don't need to. That is none of my business. But it would be income coming in and would help you. I have heard that it is a long process and it is possible to be turned down the first time. It is a way of preparing for your future.I pray that you make the decision that is right for you and will be granted the inner peace that you need. I am really sorry. And I wish that there was something I could do for you. You are so wonderful to so many people here on this forum. It seems you always know just what to say. That, my friend, is a gift. You are a gift to all of us here.

Seeing ourselves as one of those disappointments. That one is a biggie.It sure brings our thoughts around full circle. That one and all the "what ifs". I need to think about that a little more.
Anice

Post Edited (anice) : 5/18/2009 6:57:50 AM (GMT-6)

Posted 5/19/2009 2:21 AM (GMT 0)
I am one who always gets her hopes up too high and then gets slammed down when those hopes aren't fulfilled. I try my best not to get my hopes up too much, but I can't help it. I desperately want answers and relief, and each time that something new comes along, I can't stop myself from thinking "maybe this treatment, or this person, will finally give me what I was looking for/what I need."

I need to have hope, because often times, it is the only thing that keeps me going. I need something to look forward to, so that I can tell myself that maybe, just maybe, things will start looking up. So I get excited before every new appointment, treatment, or procedure, and usually leave the doctor's office brokenhearted, and burst into tears the moment I get into my car. I don't handle disappointments well, but, what can I say? I have expectations. No one deserves to live a life with CP, and you'd think that with all our medical advancements, we'd be able to come up with answers and solutions. But instead, I am often reminded of all the things that medicine does not know yet. That is when my hope falters, and that, along with disappointment, can be a dangerous thing.

To answer fatherjohn's second question, yes sometimes I do see myself as a disappointment. I know that I shouldn't, that I should focus on all the things that I have accomplished despite living with CP. But for whatever reason, I can't stop focusing on the negatives. I look at the changes that I had to make in my life and the way things should have been had I not had to deal with CP. Sometimes I also feel disappointed with myself in that I feel that I could be, or should be doing something more to fix my problems. I feel like I am not trying hard enough, even though I know that that is not true -- that I am giving it my all & have done all that I can. But I feel that it is my body, & I was the one who accidentally caused the injury that trigger this progression, so I should be able to fix it. I don't like feeling powerless and helpless. In fact, it scares me.

Thanks for the thought-provoking thread, Fatherjohn!

hugs to all,
Skeye

special hugs for Palady, your post brought tears to my eyes as well ((((((((((Palady)))))))))))))
Posted 5/19/2009 3:21 AM (GMT 0)

Skeye, I agree that we cannot stop hoping as that would probably spiral most of us into a drak pit of depression. Sometimes we feel like we are there anyway. I agree with you, none of us deserve to live with CP. If God would have put me in charge... This brings up another aspect that I deal with. That is God. I am and have been a pastor for 27 years. I travel to many churches and speak about drug/alcohol abuse and seek financial support. Some of these other pastors have known me for years. They almost always ask me how I am doing. When I share that the surgery failed and that we are just learning to live with the pain. The first thing they do is say we need to pray and have God heal you. I wish I had thought of that. (sarcasim) They at times put it on not enough faith. So when God puts me in charge ... 

Patti, Anice and Skeye, the statement about is it possible to see ourselves as a disappointment was of course a retorical question. When I see myself at that point, I try and define what is truth and then I allow my mind to center there and not on the lies that creep in or are stated by others. Truth has a way of setting us free. Maybe not free from pain but from self condemnation. I have to constantly remind myself of some of these things. Skeye, if God puts me in charge, you will be one of the first on the list along with the others here. Have a blessed night.

Posted 5/19/2009 5:05 AM (GMT 0)
Anice,
Your post left me speechless. It felt like a gentle hug. And Skeye, I could always feel your hugs, and those of everyone!

But tonight I'm tired and can barely read but I'm not too tired to send you both special hugs!!

(((((((((((Anice))))))))))))

(((((((((((((Skeye)))))))))

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

(((((((((((((MYHEALINGWELLFAMILY)))))))))))))

Fatherjohn the point about God healing....another area, and probably a very sensitive one! You'd probably be the only one who could get away with it. I'd better not even try to go there while I'm this tired!

Sweet dreams, all,

PaLady
Posted 5/19/2009 5:05 AM (GMT 0)
fatherjohn,

Do you think that God is punishing me? CP is hard to deal with. I started to go to church this last year again because my daughter started cathdichism (sorry for the mispelling) I always would think about God and pray, but when I started to go to church, I would feel a sense of calmness. I would also get depressed at times or angry. i would ask him why this happened. Why me. I have started to realize it isnt a punishment. He cant make this happen. Our pastor got in a moped accident this last Oct and 1 week later had a heart attack and died. I have lost support at the church, we have a fill in right now. We deal with disappointment in different ways, but you are strong. I get up everyday and it is hard to get going. I help people heal and deal with disappointment with their health, help people deal with losing a loved one. This is my escape from my own disappointments of my own life. I have built a strong wall around me but I keep going because I dont want to be a disappointment in my children's eyes.
cshelp
Posted 5/19/2009 6:07 PM (GMT 0)
I almost did not add the part about church/pastor because I know that can be a debatable subject for some and do not want to look like I am preaching or promoting a specific belief. But it is part of my journey and I know a part of others as well. Unfortunately, many people have been hurt or judged by "the church" whatever that means for each individual and it is unfortuanate because it could be another area of support for those who have it as part of their life.

Cshelp, you mention building a strong wall around you. Sometimes the wall can be good and sometimes it can be limiting, depends on the kind of wall and its purpose. I hope the wall that you are speaking of is a protective wall that helps you. I have shared before as well as others have that we loose support from paople around us including church, work, friends and family. I think many of us have experienced this but we still need the support so this forum helps provide us with part of that need. Thanks for sharing. (I do not believe that God is punishing you or any others here. That does not mean we don't feel that way at times.
Posted 5/19/2009 6:31 PM (GMT 0)
fatherjohn,
thank you for responding to my thread. The wall I have is good and bad. I have anxiety attacks if I have to let down a wall, but I make myself strong get thru it and then the wall goes back up. It keeps me safe but I dont deal with my problems any better than I should. People in this world do overjudge people and I dont like to be judged. I am very sensitve in that way where my husband says dont worry forget about it thank you again.
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