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What is the hardest

dilaurodilauro ConnecticutPosts: 9,865
edited 06/11/2012 - 8:59 AM in Depression and Coping
Ok, right now since you are a member at Spine-Health you probably have some type of spinal problem and you are looking for answers.

So many of us first come here looking for more information. Information that we seemed we didnt get from our doctors or that we did not understand.

Slowly we find out more about the forum and member community and learn to appreciate it. In many ways this is a very unique situation. We are a Support group with really no boundaries and without many rules or faces. But it works!

But on the home side, what have you found to be the most difficult and hardest thing(s) to deal with?

- The Pain
- Limitations and not being able to do the things you want
- All the Medications
- Fear of Surgery
- Fear of not having surgery
- Relationships, the impact of chronic pain
- Financial concerns

I could probably list over a 100 things that one time or another has been an obstacle and burden for us.

Here, we dont judge one another. So, please feel free to express what is your biggest obstacle, what you really feel inside that is almost erupting.

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


  • as i have just gone through hellish surgery i would say PAIN /restriction on my life/fear/the realisation that at 45 i am not as young as i thought i was !.the stress of not being able to sleep on my own bed {still sleeping on recliner due to not being able to get out of bed without help ..not fair on kath.

    and something that got me thinking whilst in hospital ..just how frail we can become so quickly.i know that spinal surgey is always a big thing and many of us suffer everyday and night with it .i am still not able to eat a meal and my mouth is still dry and my vocal cords scratched .the body's is an amazing tool but its so fragile too .that scares me without the help of family i dread to think of just how bad life would be /like you say ron i too could have written a 100 things but at the moment these are the things that are at the forefront of my mind
    a very emotional tony
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • dilaurodilauro ConnecticutPosts: 9,865
    All Things Must Pass

    You will regain strength, you will go back to many of the things you did before.. I wish I could say it would be without pain. But you will move on.

    You know it, your wife knows it
    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
  • I could say a few things but when I roll it all into one it comes down to the Drs!

    Finding a Dr who will take care of the pain, I mean REALLY take care of the pain! Send you to other type of Drs as needed. Order the right tests etc.

    Not make you feel like a druggie.

    I am blessed with a great Dr. But I read post after post from people who health and/or lives would be better if they had a good Dr.

    For myself personally - currently one of the hardest things for me is to earn a living with my injuries. I am learning a new career but at 50 (almost just 2 more months lol) it is not easy.
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • I started teaching after a long period of time for just two hours to kids of fith grade. They are great! I realized how much I miss teaching, how much I love it and also realize how much I have change since surgery... I wish I could be more enthusiasthic, could be able to write in the board without pain... I haven't write more than a sentence. I invite my students to make some breathing exercises and to do some mimics of animals and daily activities... and I find myself being so different... and today I have cry so much... because I am glad I can teach for those two hours eventhough is so uncomfortable... and sad because I see myself so different in just a year everything change...

    Tomorrow It will be a year from surgery.

    thanks for this space.
  • The fact that you know its only going to get worse. The pain is easy to deal with and if I was told I would be better in 10 years I wouldnt mind, as it stands now though being 18 and having another 60 years of progressively worsening pain to look forward to is not enticing.
  • SavageSavage United StatesPosts: 5,476
    ..relationships..family friends, but also health care providers. The chronic pain is a strain on all and being believed and supported is priceless.

    Then..finances. Slowly, I am losing everything I have saved and even need to look into help with food stamps.

    Those are the worse part for me...at this moment in time. Next week...it might be different :)
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • most difficult for me is trying to both accept and cope with a sense that i no longer have full control over my own body. basically, my back has a mind of its own. particularly troublesome are the limitations i have with common simple household chores. things like vacuuming, sweeping, cutting grass, shovelling, and lifting are some of the things i absolutely cannot do without significant pain increase. people do these things for me, which is humbling but also provokes feelings of incompetence and shame.

    Hhhhhm, now i am feeling sad ... :(
  • The thing I am trying to get past now is the depression and the feeling of being alone. All I did today was spend the time in my room sleeping when I could. It's only been 2 1/2 weeks since the surgery but I am already tired of the limitations I have and am sick of this collar-it is so hot and sweaty. And I have another 8 1/2 weeks to wear this. Plus I also face another surgery for the torn meniscus.

    I am just so tired.
  • Feeling that I'm a burden to everyone around me that has to help me take care of my two small children (ages 3 and 1) and watching others pick up my baby (I've been told not to)
    Feeling like an inadequate wife to my husband because most days, I can't even unload the dishwasher.
    The fear of what's to come. I just turned 30. What will life be like when I'm 50 or 70?!
  • SavageSavage United StatesPosts: 5,476
    I totally understand your comment and feelings. They have been in my head and heart,also.

    And I say it to myself as I say to you, That we never know how we touch other people's lives or how we are being used for the good of other people.

    That is difficult for me to see with my loved ones most of the time... but re' other people in similiar situations to mine...I have heard people respond with..like..I think I have troubles, I'm going home and show and be more thankful...to whoever or for whatever.

    Even in my disability..and I am not unique...a life that seems limited can be used mightily...ways we never see.

    I would be admiring your endurance...your concern for others in spite of the pain and limitations you struggle with everyday.

    Sometimes I think...as life eventually has challenges for everyone eventually..that maybe those who dont understand now..will have strength when their time of struggle happens from your example.. my example.

    And my bet would be that on death bed, it will be the deep love for those in your life that will fill your heart. That you lived it and showed it through the pain and limitations and that will be obvious to those lives you've touched.

    Again, not to take away from feelings you have..and I have similiar...but felt to share another perspective and I think I needed to be reminded for mysself too. Thank you for letting me respond to the way you touched my heart this morning.
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • dilaurodilauro ConnecticutPosts: 9,865
    So often we read about members who talk about their current medical situation and how is it going to be 20,30,40 years from now!

    I'm one of those who has seen those years go by. No question there have been some really dark and painful times, but on the same hand, I am so happy to be around.

    If I was to have died 10 or 15 years ago or even before I started having chronic pain, sure I would have left this world in a much healthier physical state, but I would have LOST so many precious moments in my life. Getting married, having two children, watching them grow to adults and so many great memories it would be impossible to list them here.

    And when my time comes, I never want anyone to say, he suffers no longer, but instead I want them to talk about how much I enjoyed life despite all the medical problems.

    In the scope of things, life is way too short, I am not going to allow anything to rob me of a minutes time.
    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
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    The journey has been so long and hard. That even after giving this a lot of thought in the hour scince I first read it. I just can't give a response. I can't nail it down.
    Over the many, many years. And the many, many procedures and surgeries. It has changed so many times..........................
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • I feel so much like anelsen and wish so much I could feel like Dilauro. I miss how I used to laugh. I miss being funny. I miss being able to concentrate to read a book. I miss sleeping. I miss my friends. I miss me. I miss being able to do more stuff. I miss enjoying a movie. I miss dancing, yoga, a bicycle ride. I miss being able to be spontaneous as before. I miss hugs without fear and kisses, and being happy. I just don't see the light. Everything was so great and suddenly and not that suddenly it changed. I don't know what to do to feel better. I feel I don't get to come to the shore. I miss how I use to love the ocean. I miss playing... going out. I just know it will never be the same and it hurts so much. I read Dilauro and it gives me some hope. Miss being able to sit as I want, to lay on my belly and not feel it in the neck, I also miss the life I use to have and where it was heading. I miss who used to be my boyfriend. I wish I had done things in a different way... I don't know how this is going to end.

    I wish I could go to bed with a loving partner by my side.


  • jlrfryejjlrfrye ohioPosts: 1,110
    I MISS ME!!! I miss the old person I was. Yes I have adjusted to the new me ( i had no choice) but every once in awhile I find myself thinking about the old me. The person I once was. That being said, since all my medical problems some good has come from it. I am now a more compassionate person. I treasure family more now then ever, Im not career driven like before and put my career before everything else. So in some ways it has made me a better person.
  • I also miss my good relationship with my family. I get sad and they get angry because I don't accept this new stage. Is that I don't know if I have to accept something because I thought I was going to get better and I still hope so... I don't even know what to think. But I so really miss my family. I need to learn to be a person to be fun to be around again... but for some strange reason I don't get accostumed to talk spontaneosuly with the pain in the neck and feel natural. Just thinking that this could get worst and last for the rest of my life makes me sad. I have to go to work... I use to love my work it was with kids and people, use to help others and teach... I think family is a very needed support. Well I have this forum that it helps me feel less alone and different from all my friends.
  • Hello Anelsen15, how are you today

    We are here to be helpful supportive and encouraging, if you need additional professional help please get it, we do understand we all live in pain and deal with similar issues. Your contribution here has been invaluable to many myself included and you have given good and support advice even when you needed help. Even in pain you have thought of others and how you could help them, that is a fantastic gift, it takes a special person to give of themselves while in constant pain.

    That same person we all were is still inside, and it is true that our CP decisions do have more impact and that in itself we cannot change, you are part of this pain family, some newbie is looking for your advice on how to cope and the true meaning of getting through.

    Sending you a big man hug, stay cool and be kind to yourself.

    Can we help you with anything ?

    Take care, John
  • I am ok. I appriciate it. I just hit a big roadblock, cause I knew things were gonna at least get a little better after grad college, no sitting, no studying everyday, free time etc, less stress and I had some luck with thoracic injections. And I played with them kids and had one jump on back and now areas like lumbar, which never hurt in 8 yrs are killing me now. I am having spasms, etc in neck and low back. I ended up losing the few good days I used to have or at least waking without pain that gave me hope and I lost my girl of 16 yrs. It was all I had held on to and I thought it was about to get better and it got so much worse as I gave up LTD to return to work and the pain is really much worse now. But they just found out my thyroid is way off levels ( removed due to cancer 08) and that can have bad impact on panic attacks, depression and pain levels so fingers crossed. But I admit I was in verge of nervous breakdown after getting hurt right after some good releif came into life and hope for better after school, I worked really hard and wanted to give up but didnt and this is what I am rewarded with. Tougher than I really could handle.
    Yea, I love helping when I can. My biggest regret is I did not go into nursing and become nurse prac. and specialize in spine care ( which did not know you can do), but i was scared I could not get through clinicals etc with back. I really would have found my calling I think. Oh well, just ready to move forward not back anymore.
    Herniated T6-7, multiple herniations in cervical, tears in T5-T8. Stenois at levels and smorls nodes from thoracic thru lumbar
  • Anelsen, you had me worried, you have achieved so much and should be proud of your achievements and tenacity of getting through, in life it is never too late, as a direct consequence of my spine issues I work in a job unimaginable in my healthy lifestyle, pain made me focus on what was important and how was I to achieve these goals and aspirations.

    Some of my hardship issues continue, I could see that my career would need to be reinvented and have done so with unimaginable success and continuing joy, at 29 my wife gave up her hopes and dreams to care for me and with all my heart I can never repay that kindness, devotion and humility.

  • The biggest difficulties for me were...
    ... admitting to the fact that surgery was necessary and my only option. It took me a long time to acknowledge it. I was in denial and thought I could fix it with physical therapy.
    ... pre-surgery I feared the nights. Afraid I would wake up with limited paralysis and not be able to contact someone for help.
    ... accepting the "two steps back" days in recovery. I was determined and motivated and expected "one step forward" every day.

    I tried to maintain a positive attitude and told myself this was all just a little speed bump in my life and I would get past it. Ultimately, I think that's what kept me moving forward to get back to "normal" as much as possible.
  • dilauro said:
    So often we read about members who talk about their current medical situation and how is it going to be 20,30,40 years from now!
    ^^ This. For me, it's the hardest. I have this amazing family history of longevity. Late 80's for my grandpas, one of who had polio as a kid. 90's for my grandmas, one who had RA as long as I can remember. Her hands were twisted, but she still cut greeting cards to create her own and always sent those to us on the usual occasions.

    I know I'll live long (knock on wood!), and I know I'll hurt the entire time. (well, ok, not the entire time)
  • The way I've been feeling these last couple of weeks, I think every one of you has said things I can identify with.

    The things I find the hardest are:-

    **** No, no, NOOOO!!

    For goodness sake Sue, get a grip!!!!

    I've just spent ages typing out a whole list of things that I'm struggling with right now, but I've just deleted it all. Why? Because I was depressing myself so much just reading how long my list was getting..... I thought it might be a therapeutic exercise for me, but it wasn't.

    All I will say is: "The whole thing sucks!!!!!!"

    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • I hear you. I was the same way with pain journal, it sucked to actually write the way I felt down and things I missed out on that day, etc. Screw that I think enough about them already.

    Chronic pain, man that is probably one of them most horrible things on earth. Its there waiting to rob you of your progress, your hopes , dreams. Its like it toys with you at times. Its stripped me of all wordly things including the few I had remaining after I was injured the first time it was just waiting for me to graduate and get some hope and it snatched it all away from me and left me with less than I had before I busted my but through 5 years of school. The few relationships such as spouse and godchild that I held so important crumbled under the new, worse pain; I was forced to give up my volunteer work with foster children due to not being able to give them as much time as needed each month, forced to give up my dreams of contiuing education to masters. I really could not have done school like this. The pain remained just alright enough that I thought I might still be able to work so I dropped LTD and after starting work everything has deteriorated rapidly but I have no safety net now.

    It is just a vicious cycle and I would say I miss just about evergything pre-pain even the bad stuff was manageable and you stood a chance to beat it. Acceptance is just not something I do, and in reality it worked for me somewhat cause accepting that I should not be in school due to my pain levels, accepting that I should not return to work, etc would have held me back so much, but it came at the price of severe pain. I actually started to turn a corner and could not wait to come on the thoracic forum and say I am starting to come around, I have a glimmer of hope, I found a doctor who could do the surgury after 8 years, I have something to combat the pain,I am actually living after graduation but couple months before graduation pain/life was there to say " fooled you ". Now I am worse than ever in pain, alone now, fighting to hold on to a job, cant take pain meds with work I do.

    I am desperatly hoping that these things I gave up are only temporary and I will be able to return to them after getting pain levels under control.

    Anti depressants are good, I am on them now, but I promise you that small relief from injections did more for my mind than any medicine I have taken. The stabbing releif was almost permanent. Just the knowledge that the pain will get better or I have some avenue's to fight it I did not have before.
    But the realization that I can control that thoracic pain now and the new pains have become uncontrollable and I have to go through all this over again , especially without LTD,is just to much, it really is. And now getting SSDI with an engineering degree will be so much harder than prior.

    Sorry for rant, i lost control of my legs and almost fell yesterday at work during spasm and had a terrible day in bad, bad pain. Its just hard to swallow new injury seems its gonn be worse than before, but its been going on for a yr so hopefully I can find something out. I am scared for surgury such as fusion in lumbar/cervical due to my already injured thoracic ( that is 75% better than when in school) so I am hoping that will not be something I have to do. I need some hope cause I cannot power through this weakness and spasming as I could with thoracic that was just all pain. Its been 24/7 since around april last yr and everyone here knows I was pain free upon waking with just thoracic so that lack of sleep been getting to me along with these new panic attacks when spasms start.

    Thanks for vent, needed it right now
    Herniated T6-7, multiple herniations in cervical, tears in T5-T8. Stenois at levels and smorls nodes from thoracic thru lumbar
  • ^ thats pretty much what I want to avoid. Keeping up a solid gpa while managing pain is incredibly frusterating.

    The thing that probably really irks me most is also people with good spines that dont really use them...
  • What I find the hardest is how my kids view me now. They see it in my face and ask me when my neck is going to get better. They miss the old me and I miss the old me.

    Also, hanging onto the hope that the pain will get better in the future, but knowing it might not.
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • What I find the hardest is knowing that there is no end.

    Acceptance, learning to love the new me, finding new things I like to do, and having the motivation to get out of bed.

    I haven't done so well with getting out of bed lately. Closing myself off in my bedroom is my coping strategy. But coming here and reading how others push forward helps me to know I am not alone.

    Chronic pain to an outsider reflects weakness. I'll admit that I had that view before my injury. "Just get up and get going!" "What is it this time?" "So and so is such a baby." "Get up and go to work." "Yeah, right. It can't hurt that bad." "If you get off your butt and do something you'll feel better." Those were the kinds of things that I thought to myself about others, so when I found myself in this situation, it was really hard for me to get over my own prejudices regarding people with pain. I found that all those pre-conceived notions are false, but accepting my own pain was very difficult. Even now I fear that people are looking at me with those same thoughts that I once had about CP sufferers. I fear that people think I am exaggerating or making it up. I fear that people think I am lazy or whimpy.

    For those of us who deal with it daily, having chronic pain just shows how strong we are. We are not weak or lazy. We are strong and battle through each day, conquering it bravely, only to have to repeat the same thing day after day.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • If youve seen that commercial for shoe insoles (dr. sholes)for back pain and dad/husband comes home in good mode, wants to play with kid, wants to go out dancing with wife and they scream saying thats not my husband/dad cause they are used to his back pain getting in way of everything and him being grouchy. It was a funny commercial but kind of broke my heart, cause its how it is. If I came home and was getting out doing things, excited, outgoing, people would be like what is different?
    Herniated T6-7, multiple herniations in cervical, tears in T5-T8. Stenois at levels and smorls nodes from thoracic thru lumbar
  • Accept - Adapt - Advance - Ain't

    Accept the fact that it is what it is.

    Adapt to the limitations.

    Advance your life inspite of these limitations, because they are nothing but redifinitions of opportunities.

    Ain't no doubt - it is tough!
  • A difficult part for me is knowing that I can't ever give birth to my own child. I would never be able to handle the extra weight that comes with pregnancy and carrying even a ten pound baby would be too much. I'm 30, my friends are married and getting pregnant or are already mothers and I'm presently worried I reherniated a disc that I already had surgery on. The stress I have to deal with, my friends can't relate to. I relate to the baby boomer generation more than people my own age.
  • I heard that one a lot too. If you just get off your butt and do something you'll feel better. In fact, I had DDD - my x-ray didn't show a herniated disc. My stupid physiotherapist told me I needed to stregnthen my muscles - go try the elliptical. And thus I herniated my disc. Sometimes, rest really is best.
  • Plain and simple, I miss my life prior to the onset of my symptoms and surgeries......I miss running, hiking, backpacking, chasing my kids, wrestling with them, working a full day, etc etc......

    April 2011 C1-C2 Fusion (Brooks wiring)
    January 2012 C1-C2 Revision Fusion (Harms Technique)
    2010 - current: Trigger Point Injections, Epidural Injections, Bilateral C2-C3 Radiofrequency Ablations
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