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So much more

dilaurodilauro ConnecticutPosts: 9,842
edited 06/11/2012 - 8:47 AM in Depression and Coping
is what we all have to deal with. We have tons of posts where members talk about their medical problems, their situations with doctors, the surgeons, all the diagnostic tests and so much more. For the most part this is black and white and easy to understand.

We may not always agree with how all of this is handled or what is actually being done to help our situations.

Unfortunately, chronic pain is something that not everyone understands, its something that cant be measured, so both the laymen and the medical professionals might not get everything right. This is our battle, our personal war we have to fight daily.

But, there is more, the emotional toll this takes. Not only the drain on our mental strength, but also the tool it places on our families and loved ones.

We sit and watch how they adjust and handle our situations. Sure, some handle it better than others. But overall, to me, its unfair. If we had something like a missing limb, it would be easier for others to understand. But for us, it just doesnt show. People cant see our pain. They do see what it does to us , how it can make our moods swing back and forth. But can they say the drain in our eyes?

We have the physical aspect to deal with and that is our personal war. But our loved ones, when they look at us and dont understand, what can we expect? When they see us sick, see us in pain, see us throwing up, see us not wanting to be around others...
Do they understand? Can they understand?

My hope for all of us is to have as much of a pain free life as possible and also for an understanding and thanks to our families that have to deal and witness all what goes on.

None of this is easy.... But we all must find the way we can move on.

I wish we all have the physical and emotional strength to deal with all of this.
Ron DiLauro Spine-Health System Administrator
I am not a medical professional. I comment on personal experiences
You can email me at: rdilauro@veritashealth.com


  • Thanks for that dilauro,
    I'm fairly new to all of this.
    I'm feeling sad & guilty that my 18 year old daughter has decided to do online school instead of going away to college, because she knows that I have no other support system. And that I wasn't expecting to have to rely on any of my children so much for another 30 years.
    That I can't contribute financially right now.
    That people don't understand why the Drs can't just "fix" me & be done with it.
    That I don't even want to talk to my friends & family on the phone, because I'm in pain.
    That my pets are being emotionally neglected.
    That I can't hold up my end of my obligations to the community that I had volunteered to do.
    That I can't travel to see my elderly aunt whom I haven't seen in over forty years (no matter how much she begs me)>
    The list goes on & on.
    I'm sure that's why many take antidepressants on top of their other meds. I may need some myself soon.
    At the same time, I'm blessed to have a wonderful husband & family. Good friends, I don't suffer from a terminal illness. My children & grandchildren are healthy & happy. And last but not least, I found this forum full of wonderful people who understand.
  • Tonight when my daughter and I were at the barn, a friend asked how I was doing. I gave my usual answer, "hanging in there." It means "not great, but I'm not giving up."

    My daughter said "why don't you just say you're doing good? I thought you were supposed to say "good?" We had a discussion about this, because I know I did not teach her that it's necessary to be dishonest to people about how you are when they ask that question (tactful, yes, dishonest, no).

    We continued the discussion and it came down to the fact that my saying the same thing all the time made her feel like I was never getting better. It is a constant reminder that her mother has health problems.

    I just thought this story fit with your post, Ron, about how this is so much more. It's not just my constant battle with pain, it's my daughter not being able to hear her mother say "good" when people ask how she's doing.
  • What you have said Ron is very powerful and Im sure that most, if not all, members will relate to fully..

    Thank you for putting down in words what most of us feel daily and dont seem to be able to express ourselves properly..As youve said, it just doesnt affect us it affects all of those around us..

  • Up until March this year I lived about 30 yards from my local drinking establishment and being on the committee I was in there most nights of the week.

    I now live a good 15 minutes walk away for someone that's fit. In fact it's too far for me to attempt the walk as I'd be in so much pain when I got there it would be pointless.

    I now have a car thanks to the Mobility scheme here in the U.K so I can get to the club again albeit to drink Coke instead of beer.

    Some of the looks I get and the whispering that goes on can be upsetting and it's only a matter of time before I stand up in a crowded room and say my piece to shut these people up.
  • sunny1966ssunny1966 VIRGINIAPosts: 1,385
    For putting words to my feelings. You must have been reading my mind when you wrote this. Just goes to prove that someone does understand.

  • I wish you could hold individual seminars and we could invite our families and friends. Somehow you have the ability to say it like it is. Maybe you could explain why I look like a normal human being but why I feel as though I have to put on a show for everyone in order to not be judged.
    I had my rt vocal cord paralysed during my cervical fusion and speaking is but a whisper. I can't tell you how many times a day I have to tell people I don't have a cold. It's gotten to the point where I just let my husband answer all calls. I have shut myself off from the world due to something I have no control over. I am even starting to say yes I have a cold or yes I have strep throat. To be honest people seem much more accepting of that.
    How many times I am asked by family members are you better today. Or when are you going to get better. Why aren't you doing anything to get better. This really hurts. They have no idea the many painstaking hours we have all spent with every test, physical therapy, surgeries just to have some quality of life.
    So I decided since you nailed it and speak so eloquently I would love for you to be my spokesperson. lol
    Thanks for a wonderful post
  • when i think of how lucky i am to have such a wonderful husband.. it makes me so thankful, i am so blessed. he is such a good guy. He has watched all the videos online and talked to my doctors.. after 4 years of this he never complains. on my really bad days, when all i can do is sit or sleep, he takes care of everything, the babies and the housework.. he is so wonderful. he does go through some funky days though and I wonder, what is really going on in his head. he doesn't ever complain.

    My parents and family outside though, could never understand.. they ask me things like "when are they gonna fix it" and "what do they plan to do?" I can't answer that.. They are always trying to compare me to them and that hurts. But it's the only way they can get close or put theirselves in my shoes. And when i try to explain it, I feel as though I'm complaining. they were there for the car wreck though so that helps, they know exactly what happened.

    I don't know many people here where i live, but i did meet a woman briefly at the market last night, she had a collar just like mine, she understands. it's refreshing.

    Then the cashier says, "oh my gosh! What did you do??" I just reply, "herniated some disks"..good enough, no one wants to hear it.. I looked over at the lady with the collar and she just nodded the best she could. she understands..
    they always say.. "hope you get better soon!" and I'm like.."thanks, me too!"

    I know i will be better soon, not the best, but better.. thanks to the love of my friends here and my husband.

    Thanks Again Ron, for helping us remember, we are not the only ones going through all of this, the rollercoaster involes the whole unit, not just the one. whether it's family, friends, or neighbors..

    ps, you new pic is cool! B)
  • Ron so well said as always.

    The emotional part of this is so hard and it doesn't help that the meds make our emotions worse!

  • Ron,

    My hubby has been real good with asking me "as a daily thing" what hurts, and how? What was an eye opener for him aside from his going with me to my appointments is he saw my Dermatome map that I used to mark what hurts, what is numb, weak etc. I originally did this to give my doctor a 'picture' of where I was. When my hubby saw it, his "seeing that" seemed to make a big difference. Of course with the hubby I communicate well with, but friends and family not living with me? I no longer try to educate them, as they seem like they are the experts on how to 'fix' me! Yeah, right! (G)

    Thanks for the post, gives good food for thought. :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I had to re-read what ypou posted Ron, b/c it was everything that Ive been feeling. I am lucky to be a social worker, and thus - surrounded by lots of other social workers (many whom I consider friends). So, I often have my own team of personal therapists wo I can call on, when Im not doing so hot. I also have a Hubby who tries so hard to understand and help me out. I know that they all do their best, but I still feel like no one can truly understand what Im going through - unless they have dealt with spine and back issues too.
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