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How did We get Here?

Good afternoon everyone,

Today I am going to ask some very tough questions.   Questions without answers, we have all been there.  One thing is for sure.  We all share the same need to rid ourselves of this relentless pain.  Alright then, lets all get started.  I warn you though, it gets deep where I am going.

Have you come to the realization you have crossed a line drawn in the sand?  A line once stepped over, there is no return from?  I know this sounds morbid but its not meant to be.  Nothing in my life has prepared me for how I am now living.  As we grow up as children we all are so preoccupied by life we never give a thought to what our later years maybe like.  I must confess I was totally ignorant of how life in chronic pain would feel.  After having suffered the effects of aging I can honestly say my eyes have been opened to the reality of chronic pain.  As much as I love all my drs there is only so much they can do.  I naively thought modern medicine would prevail and we would all live near pain free lives. 

Enter here the word HOPE.  Without hope we are destined to failure.  We must believe there is a chance of getting better.  Nothing will paralyze us quicker than loss of hope.  Never ever give up.  This means giving of yourself to lift up another person who may have fallen.  We are all vulnerable and afraid.  Reach out to others even when it hurts to do so.  The bond of love is unbreakable.  Doing something out of love is the ultimate sacrifice.  Showing love toward others leaves us so vulnerable--yet nothing touches the soul more deeply or satisfies the spirit so completely. 

When I was a young man I used to spend a lot of time with my retired Grandfather.  I watched him as he aged and it was an eye opening experience.  He suffered with DDD and arthritis just as I do now.  I should have realized at that point in time how my own life would eventually evolve.  My Grandfather would look back on his life and talk with such fondness about his job and how he missed working.  I never understood this zeal for working until I myself aged and became a chronic pain patient.  I don't think its so much working I miss but the ability to work or more to the point, being able to work and live life without pain and the emotional turmoil that goes along with it.   

Should we have surgery and face an unknown outcome or avoid surgery and live with our situation?  There is no clear answer to this question.  I personally want to go on record as saying I absolutely wish I had not had surgery.  I would not say it made me worse so much as I traded one set of symptoms for another.  It matters little in my situation as I am still in pain.  I acknowledge people have great outcomes and move on with their lives. 

Lastly how do we deal with chronic pain when we have other health issues going on at the same time?   This is really hard to answer.  I cant believe I am saying this but I long for the days when I only had spine pain.  I am really struggling with other problems and the wheels of medicine turn so slow at times.  I truly have crossed over the line I spoke of earlier.  I must now stand firm and work through all my medical problems as best I can.  I will say I cant do this alone.  I am holding fast to my faith.   I have heard others say that religion is nothing more than a crutch people use when they cant explain or cope with life's situations.  I readily agree with that statement but would add my crutch is in the form of a Cross.  I use it daily to help me walk.  Without it I would surely fall -- never to get up. 

No matter what your personal belief system is -- it is my privilege to pray for you.  I am happy to do so.

In life there are no guarantees or exemptions from pain and suffering.  I number myself with all of you on SH.  By standing together and supporting one another we can get through this.   Just knowing others care how I am doing and really want to help by praying for me is my great reward.  I thank you for those prayers. 

dmo

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Comments

  • I have always been an upbeat type of person and I love to laugh.  I can laugh at myself with no trouble at all.  My spine surgery was the first step in a long downhill process that ended with me being diagnosed with cancer.  I am not implying any of my other health issues came about as a result of my surgery. 

    The aging process has not been kind to me at all.  I can relate to all my friends here on SH and it really bothers me when they hurt so much everyday.  I wish I could take all the pain away.  I personally am tired of going for scans, dr appointments, picking up this prescription and have to go here or do this just because my health is falling faster than a rock from a skyscraper.  lol. 

    Dave, I can really identify with your gain and lost list.  I honestly can not say I would not change a thing leading up to my surgery or in your case the cause of your initial injury.  If I were you I would have stayed home that day!!!  lol.  I know you said you have gone through depression and now are much better but I at times feel anxious.  I have medication for this but I haven't taken any because at last count with everything going on I am taking like a hundred different things.  lol.  Today I have a bone scan to see if my cancer has spread because my ribs are hurting.  My dad had cancer all through his bones so I am worried this may be my problem.   No worries though cause I hear Heaven is a beautiful place and I wont mind getting there early!!  lol. 

    Ron I know you have been through a lot with all your surgeries.  The thought of having to do all that is just overwhelming.   I take things very slow now as I tire easily and my aching spine issues really just slow me down.  I honestly worry about Sandra also.  She is a great lady fighting the good fight everyday. 

    My prayers are with you all. 

    dmo



  • memerainboltmemerainbolt IndianaPosts: 4,169
    edited 07/31/2019 - 9:53 AM

    The line in the sand, Dale. I have crossed it a lot lately, struggling with my health. And not just my spine, but all of the problems that go along when scoliosis starts pulling on your organs. And constantly losing more weight. Thank you David but lately I have not been very strong, for myself or others on the forum. And that bothers me. 
    I look forward to the enjoyment of the next day. I keep telling myself, tomorrow will be better. If not with my body but my mind and spirit. 

    Thank all of you for the support you have always given me.


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  • Hi guys,I can sure relate with all you are saying, the surgeries, the drugs, one doctor after another has become my social life, lol. Just when I think things might calm down another issue  pops up! Right now it's sudden hearing loss in my left ear and this week the white noise started. This aging thing is tough, no doubt about it. 

    I don't regret my surgeries, I'm thankful I live in a time where I have a choice. The pain of living with a herniated disc and a crushed nerve was worse than I live with now. I only wish I wouldn't have been so stubborn about the fusion and possibly avoided nerve damage. The only one I do regret is the neurostimulator but hind site is always 20/20, we make the best decision we can at the time. 

    I do think I've drawn my line in the sand recently, Dale. I'm weary, worn out, and had enough of looking for a cure! I was shocked when my neurosurgeon told me months ago that nothing more could be done and I recently heard the same from my pain management doctor. She suggested a Behavioral Pain Management Center to learn how to cope with living with chronic pain and a deteriorating body. I went to my first class this week and I am SO glad she cared enough to refer me there!  One of the first things I heard from the counselor was pain is your reality but suffering is optional. I already feel like at some point, I can kick pain out of the drivers seat. Oh I know there will be ups and downs but I feel HOPE. My circumstances won't change but perhaps the way I see them can. I'll still have to do the hard work of grieving the losses and  letting go of how I wish things were and the "what ifs"and embrace what is. I don't miss work but I miss being a wife and grieve that loss but I'm still a mother and grandmother and I embrace that wholeheartedly! So that's my story at the moment, God has led me and given me the grace and strength to persevere this far and grace will lead me Home. I'm so thankful for all of you, we need one another to keep moving forward and help when we're struggling. 

     Prayers and Shalom, Joanne 

  • memerainboltmemerainbolt IndianaPosts: 4,169

    David
    You have always been the official unofficial Wal-mart door greeter!! And you are so good at it lol. You offer a lot of good sound advice on this forum and you are such a big help. Thank you for the sweet words, it made my heart smile.

    Dale
    Your topics are always filled with thought, therefore making us really think. How did we get here? This life I have now was completely because of my spine collapsing and scoliosis setting in. Your one question, how to deal with chronic pain with other health issues is simple, you deal with it. We have to, we don't have a choice. You have to take the issue and try to solve it. That is what I am dealing with now. Thank you so much for your prayers and thoughts, it means a lot to me.

    Joanne
    I have been seeing a pain psychologist every month for 4 yrs. He has taught me how to live with the anxiety, guilt and depression. The letting go of things and the "can't do" anymore. This is going to help you so much!! And there is hope, there has to be. The two tings that help me the most are my faith and being spiritual. He told me to the thankful very day for 3 things and write them down. Months later, go back and read them. You will be amazed that we are thankful for the simple things. Good luck with this!!

  • Good morning everyone,

    I want to say thank you for the wonderful responses and for the caring attitude everyone here on SH has shown.  Most of the time my questions are rhetorical in nature but I guess I should explain this better in my messages.  I am a reflective person which causes me to spend way to much time analyzing my life. 

    While I miss working as it gave me a sense of accomplishment coupled with an income which never hurts, I am extremely glad I don't have to punch the timeclock anymore.  Most days I just don't feel up to working or really doing much of anything.  I am trying to set a world record of burning up as many heating pads as possible per year.  lol.  If I could get my GI issues under control I would fare better. 

    God Bless you all

    dmo 



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  • dmoddmo Posts: 580
    edited 03/08/2019 - 5:51 PM

    Thank you for the words David but there are times you cant use mind over matter to get through the day.  When my stomach is hurting I am forced to sit on the heating pad or lay down for a while.  I know other people also have other problems than their spine issues.  I wish it was only spine problems believe it or not.  My stomach and colon issues stop me dead when they get to hurting.  Most days start out relatively easy for me but by noon to mid afternoon I am struggling to focus on anything.  I have my upper GI scope on Tuesday coming so I hope to find some answers.  I am pretty sure I am looking at another surgery to fix my hernia.  I need to fix this as this just hurts to much to push through it everyday. 

    I was much more care free about life when only my spine hurt.  Now that its more complicated plus cancer Its not easy for me to say to my pain---move over I am driving now!!!  A person can only take so much before it just drags them down.  I am still fighting though. 

    dmo

  • Dale, I bet I could give you some competition on the heating pads, lol. I've been known to use two at one time and I always order extras in case one bites the dust. 

  • Probably so Joanne, I go through one every six months.  lol. 

    I have used heat on my lower back and an ice bag on my neck at the same time!!  lol

  • Good evening all,

    I always find it interesting when talking with others on this site the vast differences in how people interpret their circumstances.  It is a virtual rainbow of ideas, coping skills, daily rituals, medical approaches and really so much more. 

    In reality we are born, we live our life and then we die.  In the middle of all this we experience every emotion there is.  I believe like minded people seem to gravitate to each other.  We all share the common bond of chronic pain which I honestly believe makes us more compassionate to our fellow man.  I would like to freely admit I never gave a thought to others who lived their lives in chronic pain until I had to endure the exact same thing.  I would go a step further and say it truly hurts my soul to hear of others suffering.  I know how much spine pain hurts, how horrible our nights are and how brutal searching for relief can be.   

    I am a person of faith but by no means do I wish to change any person here.  I have friends who are atheists and agnostics.  To be honest I read where a lot of people lose close friends and family due to their chronic pain.  I can say in my experience I have received more consideration and understanding from others since my health has taken a turn for the worse.  For those losing friends I am so sorry. 

    I try my very best not to complain to my wife.  That being said I sometimes cannot help myself as I hurt and she is my closet and most loved person in my life.  She tries to make my life as best she can and I appreciate that more than I can ever say.  My wife will say to me "I love you" to which I reply "I love you too"  she then says "I love you more!!"  I then say "No you don't you just think you do". 

    God bless you all

    dmo


  • Such an important topic, thanks for starting it dmo. I think it is important to remember that the pain is consistent but each day is different. We can't give in. I sometimes genuinely apologize to my body for what I have put it through. But we did not choose this path...and what a strong and brave group to handle it.

  • Miss Darla,  I also am amazed at the difference in my pain location and level from day to day.  Like you, I look back on my past thinking how crazy I was to keep doing things which just destroyed my spine.  Lifting things to heavy, working way to many hours, working in freezing conditions or sweltering heat. 

    Of course its too late after the damage is done.  When I see people doing the same thing I think wow, are they going to be sorry in a few years.  I remember one man I was working with was strong as a horse.  He would lift or pull things much to heavy for him to handle.  I told him to wait and I would help or get help from another person.  He looked at me and said  "If you are going to be dumb, you had better be tough".  It did finally sink in what he meant. 

    Miss Darla why are they waiting so long to have your surgery?  Is the surgeon so booked up?  I hope he or she is great!!!  I know many people here personally who have had back surgeries and I hope they pop by and give you some advice soon. 

    Have faith my dear one

    dmo

  • Thank you, sweet dmo! Actually I saw the NS Friday (I do think he is great) and he booked the surgery for 3 weeks out just to allow for authorization. I spent months working my way towards the visit with him and a diagnosis. I am sure we all know how that goes...lots of things hurt but when they get to the next level of hurt and you know you need to 'see somebody' you have to figure out who to see. Figure out what is wrong with you so you go to the right person. My NS does not see people until they are at the point of needing neurosurgery consult. I knew I needed an MRI because going through months of therapy etc. might be a waste of painful time. To wrap this story up it took me months to get the MRI and confirm what I thought...bone pushing on nerves and not enough room for the nerves.

    I am sure we all go through this...you KNOW when something is wrong. We are not naive and know our complicated situations and bodies. But you still have to go through the steps which are a lot of time and cost.

    Good luck with your test Tuesday!

  • I am so very lucky in that I have a support group to help me whenever I just cant go on.  Besides having a wonderful wife I have a wonderful group of loving caring people in my Church group.  They will call and ask me how I am doing and offer to fix food and bring it over.  This is not an empty offer as they have brought dinner over on various nights just to be kind.  These people are my friends and I love them dearly.  It is my privilege to have them as my friends. 

    I must say everyone here also is exceedingly gracious and I appreciate the support I receive here.  I get many complements on the topics I choose to discuss but honestly the regulars are the real shinning stars here on SH.  It is so comforting to be able to talk with others who know what chronic pain is all about and how to deal with all the stress also. 

    Thank you so much to one and all.  My faith and all of you sustain me in my times of trouble

    God bless

    dmo

  • dmoddmo Posts: 580
    edited 03/12/2019 - 3:09 PM

    Hi All,

    Just an update on my stomach EGD.  I was there almost three hours in which I was diagnosed with a hiatal hernia.  They took some tissue for biopsy and gave me something for stomach inflammation.  It appears I might have some Barretts esophagus going on also  I have a follow up appointment set for four weeks.  The dr had to leave before talking with me as he had an emergency at the hospital.  I live in a small town that only has one GI dr now.  We need another one desperately. 

    I am sad though because I was not feeling bad at all before I went in but now my stomach is really hurting.  My pain meds dont help my stomach.  Well there you have it the wheels of medicine turn so slowly. 

    God bless

    dmo


  • Dave, I pretty much knew I had a hernia but did not realize I had a stricture also.  He did some stretching to help passageways and something for inflammation.  I did not get to talk with the dr as he had an emergency. 

    I guess in a month we get to talk about surgery as nothing was discussed today about how to make it stop hurting so much.  The dr had a lot of questions for me as I was getting ready to be put under but I received no answers which is just making a slow process even slower.  Two weeks before the biopsies come back so its a wait and see game.  If its Barretts esophagus then what?  I know so little about GI issues as my specialty is spine issues.  lol. 

    I don't expect to be pain free anymore.  Those days are long gone I am afraid.  What I would like to do is be able to function at a reasonable level.  I am working toward that now.  I just cant believe how slow things are and how long it takes to get answers. 

    "In your patience possess ye your souls"  I need to work on that one. 

    God bless

    dmo

  • dmo, I know that must be so frustrating.  So often we are not looking for pain free days but still asking for some answers. Hopefully this situation is treatable. I am assuming you are making an appt with the Dr to discuss? A face to face is the only way in my opinion.

  •    For me ...why me..isn't in my vocabulary...Because if I allowed it in it would of started way before my spinal issue..I never compare myself to other ....I dont think about what I no longer can do I celebrate each new day for what it is...additude is so important..life isn't a script so no one knows for sure what theirs will be...why waste energy thinking about all the negatives and longing for something your never guarenteed..no one know in a day a week or a year what will happen. Lifes short... sitting dwelling on what you thought it might of had or been is a waste....

  • Hi Miss Boo,

    I read your comment with interest.  I know you are a strong individual.  I wish I had some of your strength for the times of trouble which follow me. 

    The title of this message is "How did we get here?"   Truthfully I am not looking for answers as this is put forth as a rhetorical question.  As more and more people commented the message has evolved into much more than I intended.  It has broken down into specific instances in our lives culminating in pain and suffering. 

    Honestly I can offer only my compassion and sincerest wishes for the wellbeing of all on the SH website.  I pray for us all daily as this comforts me and I hope others take comfort in my doing this also.

    I know you have been through much turmoil, pain, suffering and a heartbreaking loss in your life.  I also one day know you will receive back to yourself that which you has lost.

    God bless

    dmo 

  • Hi boo...I agree and try so hard not to give in to really looking too deep. I try and keep things light even in my own thinking. If I did not do this I would start melting down. One thing at a time. I try and stay positive but it is not easy.

  • angie29angie29 Posts: 97
    edited 07/31/2019 - 9:53 AM

    dmo

    Love and prayers for you my friend.

    In spite of everything,  you are a remarkable,  kind, caring, thoughtful and supportive friend to many.

    Not only that, you are much stronger than you believe. 

    I truly appreciate your prayers dear friend.

    God bless you. 

  • Angie,

    It is because of people such as yourself that I am able to make it through another day.  I appreciate all the prayers and warm thoughts I receive everyday.  This is such a special group of people.  I would like to say also the moderators are so kind and caring. 

    Lately I have had many wonderful people message me and check just to see how I am doing.  In a world of darkness and despair this is truly a beacon of light and love for us all.

    dmo

  • Although you wrote this beautiful piece back in March, I'm only reading it now (somewhat new to the group).  Thank you for reaching out and offering hope and prayers.  I can't stand this pain.  I want the doctors to FIX it.  I'm following all the proper instructions, and still I wake up in pain.  Sometimes I'm ok, most times I just stop and cry.  It can feel like such a loney journey.  It feels like everyone around me is doing just fine and I'm supposed to be "fine" around them.   Thank you for sharing your honest thoughts and for sending out prayers.  I'm so grateful for this forum and good people like you.

  • memerainboltmemerainbolt IndianaPosts: 4,169

    mjcg

    dmo is such a wonderful person!!
    This is a lonely journey but you are not alone here. Join us more often, rant and cry, we've all done it. That's what this forum is for, support and helping each other.

  • dmoddmo Posts: 580
    edited 06/10/2019 - 7:54 PM

    Hi MJCG,

    Mary,  Your comment struck a familiar chord deep within me when I read your past messages.  I also absolutely dread going to bed at night.  The reason being I know without a doubt I will awaken a few hours later in pain.  When a person fears sleep they become a hostage in the world they live in. 

    I consider myself most fortunate that in this climate of anti opiate prescribing I am blessed my dr has the compassion to offer these kinds of meds to make my days easier to live through.  I am a believer in the multiple therapy approach to pain control.  That being said having an opiate pain med to help reduce my pain is necessary in my life right now.  I will acknowledge there are others here who are able to fight the good fight everyday without opiates, I am just not one of them.  It would seem your meds and the therapies you have tried have had a limited positive impact on your pain thus far. 

    Mary this is just my opinion but as such its another option you might want to consider.  It is my privilege to pray for you and your return to good health

    God bless you and best wishes also. 

    dmo

  • DMO - God bless you as well!  I am definitely leaving all medical options open.  Thanks for being here and sharing your experience and wisdom with me!

  • I'll tell you my story of how I got here. I have nothing to lose and maybe someone will learn from it. I embarrassingly injured (and ruined my life) a couple months after turning 28. I'm 29 now. But for 2 or 3 years prior to turning 28, I would wear boots with 3 inch insoles. I did this because I was ashamed of my height as a short man and got tired of being judged as inadequate compared to others. Well turns it was the worst decision I could have made for my health. As I woke up with horrendous stabbing pain in my lower back. Embarrassed that my back pain was an overuse of some lower muscles. I didn't see a doctor immediately. By the time I did most doctors I saw said it was muscle strain. The one orthopedic surgeon assistant that did give me an MRI revealed a l5s1 central disc protrusion. I don't know whether to be grateful or mad as he did not refer me to surgery. I deal with lower back pain everyday. My new primary even advised me that my protrusion wasn't the cause of my back pain and sent me to a chiropractor and all but dismissed me. I wonder if I'm going to overdose on Advil as I have been taking it daily in small doses. But how much can the body take? I am honestly envious of those with you with "good" doctors that actually want to help you or at the very least listen to you. Anyway. That's my story. I could've had the "normal life" if I just accepted myself. God bless. Take care

  • I respect all and their religious beliefs or lack there of. I to look towards the cross.  Maybe someday I find it was not real or I’m just in a blank state of it does or does not matter but I choose to believe in it for strength.  I am not where many of you are but I would be here for each and everyone of you.  My great grandfather Shuler was known as the type to give the shirt off his back.  I knew him when I was 10 and under and it hurt when he passed.  I also unlike many of my family have gone through life in my 44 years my own stubborn way.  I experienced things that were eye ( maybe third eye) opening back in my following the Grateful Dead days.  And some other beautiful musical sounds thereafter I felt worthy of my time.  I also broke several guitars 3 years ago in tears because it hurt too bad to play standing or sitting.  My wife was able to fix several with wood glue.  Others lost in the fit of sadness and rage now hang in my musical man cave.  I loved sports and adventure to the extreme.   I do have hope.  And I bring love.  The old saying where there is love there is Hope rings out to me.  But I struggle like hell.  Im no where close the dad to my youngest son that I was to my oldest due to my chronic pain.  At 8 he is sleeping in between my wife and I as i type this.  I found business success on my own.  Didn’t inherit my fathers biz though I could have.  I liked balancing both getting my hands dirty and creating business worldwide in a complete polar opposite biz than what most would expect upon meeting me. And was the top tier of my industry though that can’t stay for long if I can’t become mobile again.  I respect my elders and those younger than me.  I was told by a world and industry vet last fall that no one has my passion but it now hurt to watch me hurt while teaching my trade abroad. The line in the sand though not crossed I see it.  Scared to death of it.  As much for me but for my wife and children and parents to see me approach it.  2:35 am and I am hanging out due to hours of sleep out of wack.  Due to surgery and pain.  Hugs and good rest to you all.  We can escape sometimes in our dreams.  Often not even there though.  May your glasses someday soon be filled.  My brothers and sisters in pain  DC


  • Without a doubt the single most important thing in my life is love.  My own personal definition of love is "Caring more for the person you love than you do for yourself".  I hope my words below do not cross any lines of SH protocol. 

    These words were written over two thousand years ago yet they are the most wise I have ever read. " Love is patient, love is kind, it does not envy, it does not boast.  It is not self seeking nor easily angered.  It keeps no record of wrongs committed against it.  Love does not delight in evil but rejoices in the truth.  Love never fails." 

    While these words were written by a human being they were definitely inspired by one of Heavenly origin. 

    Superback, I would venture to say your life is such that you are looking for answers and meaning to your life as it is.  I would like to say to you I am sorry you are suffering such great pain.  There are many here who walk with you each day.  I also have sat up in pain more  nights than I would care to admit to.   Pain surely changes us over time. 

    If you have someone who cares for you and walks each day with you then consider yourself a blessed man.  Having both family and friends to help carry our burdens is such a joy to my soul. 

    I have a few friends here on SH who I dearly love and I am so thankful for them.  Those closest to me give me hope for better days to come.   Life without hope is surely a life lost. 

    My prayers are with you.  It is my pleasure to do this.

    dmo

  • Love is beautiful and awesome. You are spot on.  

  • Love is beautiful and awesome. You are spot on.   Your post is 100 percent inspiration.  I am blessed and lucky to have found people here recently.  Including you dmo.  I am a blessed man.  No doubt. Thank you for re-emphasizing and helping me to see. Your apology regarding my pain expresses the character of your unconditional love to people of the world in this case me. Thank you.  I walked with my father first today then this evening with my 8 year old. My wife just sent me to bed about an hour ago because I was starting to do a bit too much.  I had been in bed a lot lately and I have a bad habit of doing too much after bouts of pain that I end up back where I started.  Today I could was just to walk 2 x at 10 minutes but I walked an extra 8 minutes so about 14 each go. Plus I hung out around my family instead of going straight back to bed. I do have a lot of ice on me. I’m in early recovery stages of my second ALIF.  A little over 3 weeks since so granted I will have a lot of bed time and siting is just not doable but I was happy to just feel good enough to stand in the den.  Love on the dogs. I smiled a lot today. First day I have had like this in a good month.  Tomorrow may be different.  And today though awesome was not so much as a shadow of who I wish to get back to being but it was undoubtedly a step in the right direction.  I wish all of you a pleasant evening.  DMO thx again for the positive message above.  It is beautiful.  DC


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