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Old 10-02-2012, 12:38 PM   #1
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Did chronic pain change you?

Did chronic pain change you?
I am not the person I used to be before this chronic pain.
I used to be friendly and nice to everybody and now only sad face.
I always look serious.

 
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Old 10-02-2012, 08:52 PM   #2
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Re: Did chronic pain change you?

Definitely. I'm more moody and pessimistic now. My hubby can tell how my pain is doing based on my attitude...I'm more bubbly, goofy, laughing, etc, when I'm feeling better. I get more withdrawn when its not going well. Positive thinking and acting helps some though. If I dwell on how bad I feel or what I can't do, that certainly doesn't make it any better. Its also made me emotionally stronger, feeling that I can get through anything if I can get through this. Best wishes.
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Old 10-04-2012, 12:03 AM   #3
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Re: Did chronic pain change you?

It certainly changes you but it doesn't have to be for the worse. I think I appreciate the good things in my life more than I ever did when I was physically healthy. Ambition, money, ego aren't what drive me any longer. Providing, contributing and cheerishing what i do have are things I do much more than I did when I was young and took my health for granted. Loosing my health has taught me what is important in life and to apreciate what I do have. Before every surgery I didn't think it was possible to be in more pain, waking up from the surgerries to correct the prior surgeries forced me to create a whole new pain scale because their is no such thing as a 12 and if a 10 is the worst you can imagine the last 17 years have certainly tought me there is always something worse than you can imagine.

I certainly wasn't always this positive, stabalizing my pain was crucial in allowing me to find ways to distract myself from the pain. Getting out of the house, excercise and earning anything extra is helpful in any situation. While at work I'm not home alone with nothing to think about other than how I physically feel. The night and the day after suck pain wise but the distraction while their and connection to the real world outweigh the pain.

As bad as it is for me, I have family and loved ones in the house that have seen enough and I try to do my best to meet my loved ones needs. When i was at my worst psychologically I wouldn't go to bed with my wife even though laying down with her made her feel like she had her husband back. I finally realized years ago I needed to go to bed at night with my wife and if I get back up after she falls asleep, I've met her need, kept our relationship strong and it hasn't caused me any addition pain to lay down while she falls asleep. I guess at some point we have to stop focusing on how we feel if we expect to keep others around that care about how we feel.

I can't imagine anything worse than being alone with the pain because I know how beneficial distraction from it is. I know their are people out there that dont have spouses or children and I can't honestly say I would have the same outlook, or even have survived some of the darker days. I'm coming up on my 25th wedding anniversarry and CP has been part of our lives for 19 of those years. My daughter has never known anyone different than the person I am post injury and I didn't want my daughter or wifes only memories of me to be laying in bed having a pitty party with no regard to how they felt.
The only thing we have control, over is how we respond to a catstophic health change/chronic pain and the financial changes that occur in these situations. Somebody else doesn't decide your going to be depressed or sullen and for how long or how deeply. As corny as it sounds it's true, the glass is either half empty or half full, our perception is the only thing that matters. What we do to change or adapt to our new circumstance is up to each person. There isn't a right or wrong way to adapt, we just have to look at whether the way we respond is hurting our situation or helping our quality of life and relationships and adjust accordingly.
Take care, Dave

 
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Old 10-04-2012, 09:09 AM   #4
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Re: Did chronic pain change you?

Hello friends,

I was in my 20's when I was diagnosed with Ulcerative Colitis, then Crohn's in addition to that. I didn't have health insurance so the management of my condition was spotty, opportunities were missed, and the disease finally got the upper hand leading to several surgeries. I've had many years of blaming myself, feeling shame and embarrassment while trying desperately to just be and act normal..... Frankly, it's all made me a bit nuts. I feel like mentally I've already collapsed years ago. My every waking moment is consumed by this thing, this failure to thrive, the failure to be able to overcome what already has passed me by....

My GI Docs had never suggested or offered any pain relief over the past 20+ years. I had always assumed that Abdominal pain, cramping, spasms, flop sweat, shaking, weakness, depression and anxiety were just part of the deal.... It was my PCP who eventually took action to address the pain issues by asking me the right questions. Once that ball was rolling my PCP has been there for me all the way, through the trials, the switching around, the dose adjustments. No guilt trips, no shaming, no treating me like a child, no pill counts, no urine screens, none of that crap. And what a relief not to have another nightmare experience just to make life more tolerable. In this world of a million little cuts it really helps to be treated with dignity and respect every once in a while. In that way I feel very fortunate.


~

Last edited by Isotope; 10-04-2012 at 09:18 AM.

 
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Old 10-16-2012, 06:15 PM   #5
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Re: Did chronic pain change you?

Quote:
Originally Posted by nochange View Post
Did chronic pain change you?
I am not the person I used to be before this chronic pain.
I used to be friendly and nice to everybody and now only sad face.
I always look serious.
Your post popped out at me right away just now because I just sent an email to my son mentioning that chronic pain has changed the person I am. I'm so much more cynical and pessimistic than I ever was. I used to be that person who was sickeningly optimistic (we all know someone like that, right? I was that person.) I find that I don't have the tolerance for many things that I used to not notice that involve the nervous system-- things such as annoying noises, lights, people. lol I'm just not the easy-going bubbly person I was. My thoughts are that chronic pain has your nervous system constantly engaged, not only from the pain itself, but also by your having to premeditate all that you do (as opposed to doing most things thoughtlessly throughout the day such as rising from a chair, walking, etc.). So it sort of gets worn down...

I've always been a person who tried to use humor during difficult times. I still am that person; the pain makes it a little harder to do sometimes.

Hugs to all out there going through it. Try to remember that no matter how bad it is, there's always someone out there willing to trade places with you. (See, a little of the old "me" peeking through!)

Last edited by Mod-S4; 06-09-2013 at 04:09 PM.

 
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Old 10-16-2012, 06:34 PM   #6
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Re: Did chronic pain change you?

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Originally Posted by Isotope View Post
Hello friends,

I was in my 20's when I was diagnosed with Ulcerative Colitis, then Crohn's in addition to that. I didn't have health insurance so the management of my condition was spotty, opportunities were missed, and the disease finally got the upper hand leading to several surgeries. I've had many years of blaming myself, feeling shame and embarrassment while trying desperately to just be and act normal..... Frankly, it's all made me a bit nuts. I feel like mentally I've already collapsed years ago. My every waking moment is consumed by this thing, this failure to thrive, the failure to be able to overcome what already has passed me by....

My GI Docs had never suggested or offered any pain relief over the past 20+ years. I had always assumed that Abdominal pain, cramping, spasms, flop sweat, shaking, weakness, depression and anxiety were just part of the deal.... It was my PCP who eventually took action to address the pain issues by asking me the right questions. Once that ball was rolling my PCP has been there for me all the way, through the trials, the switching around, the dose adjustments. No guilt trips, no shaming, no treating me like a child, no pill counts, no urine screens, none of that crap. And what a relief not to have another nightmare experience just to make life more tolerable. In this world of a million little cuts it really helps to be treated with dignity and respect every once in a while. In that way I feel very fortunate.


~
Thank goodness you finally found a provider who "got it." So many of them don't.

 
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Old 10-16-2012, 07:29 PM   #7
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Re: Did chronic pain change you?

lorijo822, where is your pain located?

 
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Old 10-17-2012, 12:53 PM   #8
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Smile Re: Did chronic pain change you?

Hi nochange--

I've had rapidly progressive osteoarthritis since age 40 (I'm 55 now.) I had a total hip replacement at age 42 and now need one in my other hip as well.

I have severe OA in most of my other joints as well--most notably my spine, feet and hands. On MRI I have a herniated cervical disk that I live with as best I can, as well as severe spinal stenosis and facet arthritis, plus scoliosis.

I recently herniated a "huge" (my surgeon's word) lumbar disk that required surgery right away. I was in severe pain from sciatica and spasms in both legs and had such severe leg weakness that I couldn't walk. Even after the surgery I had so much swelling that I continued having excrutiating pain and weakness--I live alone, and I fell many times even with a walker because my leg would just buckle on me. I'm very lucky I didn't seriously hurt myself during any of those falls. I was given a steroid injection into my spine at that point and it helped tremendously. I'm getting better day by day.

Unfortunately, I lost my job and my insurance last year. I didn't opt for COBRA because I didn't think I would be unemployed long. Wrong---it's been 14 months. My neurosurgeon is an angel--he took me on knowing I was uninsured and went to great lengths to make sure I got operated on. I'm pleased to report that I have secured employment and start next week. It's been hell without insurance. Just my medications, even with dropping the nonessentials and getting generics for all but one, have cost me $400-500 per month. And now I have tens of thousands of dollars of medical bills as a result of 3 ER visits, one ambulance ride, two hospital admissions, a major surgery and an intraspinal injection within 3 months. Wheeeee...! What are ya gonna do, though? If you need it, you need it.

I also suffer from fibromyalgia which causes me all over muscle aches many days and extreme fatigue. Ironically, I used to be one of those who doubted that fibromyalgia was a "real" condition. I abandoned that thinking a few years ago after a number of encounters with patients with it. It was obvious to me that fibromyalgia is a very real physiological condition. Now I REALLY know it is!

I get migraine headaches on top of it all, and even the generic med that helps me with them has been too expensive for me to buy, so I've just done the best I can since I lost my job.

The chronic pain is tough, naturally, but the severe stiffness is almost as bad for me. After I've sat for a little bit, when I get up I can barely walk for several steps. It can be quite embarrassing, even, when I'm around people who don't know my physical condition, especially when the level of stiffness I have is a surprise to me--I don't really know how stiff I will be until I go to get up.

I do find that being a chronic pain sufferer is much more bearable knowing that I'm not alone.

Lori

"Wherever you go, there you are."

Last edited by Mod-S4; 06-09-2013 at 04:06 PM.

 
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Old 10-17-2012, 01:36 PM   #9
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Re: Did chronic pain change you?

I'm facing those COBRA papers right now, wow is it expensive. I don't think I can do it. That money will be needed for meds!

If we don't do COBRA we are penalized down the road right? Can't have a gap of 63 days or something.....


Iso

 
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Old 10-17-2012, 05:19 PM   #10
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Re: Did chronic pain change you?

Yes, chronic has a chance to really change everything about your life. It did change me for the worse but then I decided that I was way too young to lay here and die. So I change my attitude and even found me a little job to help me get back to living again. So remember it will change you in the begining but you need to stand up to it and take back your life or start a new one.

 
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Old 10-17-2012, 05:36 PM   #11
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Re: Did chronic pain change you?

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Yes, chronic has a chance to really change everything about your life. It did change me for the worse but then I decided that I was way too young to lay here and die. So I change my attitude and even found me a little job to help me get back to living again. So remember it will change you in the begining but you need to stand up to it and take back your life or start a new one.
I couldn't agree more. My problems started so suddenly that I admittedly had a hard time adjusting to my new self and my limitations. It took me years, really, to face that I'm not the same as I was--I was a "dynamo" before I started down this path. I believe you have to mourn your former self and eventually embrace the "new you." After all, it's still you.

Lori


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Old 10-17-2012, 06:16 PM   #12
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Re: Did chronic pain change you?

Quote:
Originally Posted by Isotope View Post
I'm facing those COBRA papers right now, wow is it expensive. I don't think I can do it. That money will be needed for meds!

If we don't do COBRA we are penalized down the road right? Can't have a gap of 63 days or something.....


Iso
Yeah, something like that. I remember that if I didn't sign up for it by that cut off date, I was out of luck. And I seem to recall I would be required to pay something like two month's premiums at the outset. I was terminated from my job of 5 years due to my health--I had exhausted FMLA and was struggling to maintain my attendance while my employer was dragging its feet to make physical accommodations for me so I could continue to work (in a call center). They fired me on a technicality, really-- I was taking advantage of the flexible scheduling option more than they wanted me to (although I was in no way in violation of the written attendance policy, and in fact, had been approved by my immediate supervisor for the hours I worked, HR claimed I was still outside the parameters of the policy. They made up their own version of the policy as they went along to suit their purposes. Interestingly, that was also the week I was to get the test version of my customized office chair. ($$$) Hmmmm...). I had people tell me I should have sued them, blah, blah, blah-- but I've never been the litigious type. I'd just as soon cut my losses and chalk it up to experience instead.

If you're fired for attendance or tardiness here in NC you may very well not get unemployment benefits--it's stated VERY strongly and clearly right on the the claim form. So, naturally when I filed I didn't have the best of confidence that I would qualify; and of course my former employer challenged my claim. I did have to appeal to the ESC, and thankfully, since the whole "attendance" thing was health related I was approved for unemployment benefits anyway. Whew. But it took a while.

Meanwhile I had this decision to make about COBRA; I hadn't had a paycheck (nor any savings or vacation pay) in weeks and didn't yet know whether I would get unemployment or not to cover the $550/month premiums, so my thinking at the time was that I would have to pass. With 20/20 hindsight, knowing what I know now, I would have done it somehow. How was I to know that I'd be out of work for over a year and wind up having back surgery, etc.? I also didn't realize at the time that my prescriptions would be so outrageous! I wasn't aware that almost all of the generics I was paying $7 a month for while insured would cost me upwards of $100 a month out of pocket! It's misleading when you see that dollar figure on your prescription that says how much insurance paid over and above your copay, because that's actually a negotiated reduced price. When you pay full retail it's sticker shock, for sure! One of my scripts was actually going to be almost $1000.00 (yes, that's one thousand dollars) a month for the GENERIC--I had to stop taking it, obviously.

Okay, I'm rambling (venting ) now, but I hope something I've shared has given you or maybe others insight into the COBRA dilemma. It's good if you have the money to sign up and pay the premiums (even if you have to borrow money from friends or family, and I usually frown on that!) especially if you have a lot of health problems and meds. That's my recommendation, anyway.

Lori

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Old 10-28-2012, 04:34 PM   #13
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Re: Did chronic pain change you?

Yes that's a true statement that you have to let go of your former self and learn to accept the new you. Once you learn to do that anything is possible. I always had a hard time trying to quit smoking but my last trip to the hospital change all that and I haven't had one in a yr and a half now. I learn to accept my disabilities as well and now I have a job watching my neighbor's son while she works. This has really helped me out having something to do once again.

 
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Old 11-04-2012, 10:01 AM   #14
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Re: Did chronic pain change you?

To Shoreline: You nailed it!!! It is up to each person to accept & do the most they can to keep busy and above all; find alternatives for pain!!! No "One Doctor-or One Pill Fixes All"
It took me 15 years to get it!!! And I found a lot of my answers by reading this book:
The Chronic Pain Solution by Dr. Dillard. Wow, he turned my thinking totally around!!!

 
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Old 11-22-2012, 07:24 PM   #15
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Re: Did chronic pain change you?

Quote:
Originally Posted by nochange View Post
Did chronic pain change you?
I am not the person I used to be before this chronic pain.
I used to be friendly and nice to everybody and now only sad face.
I always look serious.
I just mentioned the exact same feeling in my post. I was involved a serious car crash @10 years ago - I was the passenger. The driver was negligent - he was speeding, trying to show off, and slid off the road into a tree on my side. He walked away with broken ribs and bruises, I was almost killed. The hatred and resentment I hold toward this human is indescribable, he ruined my life. All he had to say for it was, "Guess what?! I got a brand new Audi out of the deal!" Hating this person so much makes me feel guilty, as I'm not a mean person, but knowing I have to live like this hurts in every way imaginable.

Thank you for posting this...I've never talked to anyone about my pain aside from my PM doc and my mom, as I never think people will understand or they will feel sorry for me. This forum is very validating for me and I know it's so cliche to say, it makes me feel like less of a medical nightmare.

 
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