Return to Forever

[hoban]

Hello all. I have not posted in many years. I am not sure if any one would remember me. I have been struggling along in constant pain trying to keep my "New life" alive. It was nice for a time. I just could not keep the pace. Little by little it slipped away as I am sure many of you have either experienced or know someone who has. Chronic pain is like a relationship eating cancer.And so I have gone full circle. Once again completely alone. My only constant is the pain that will be with me until I die. Right now I am raw. I hope in the future I will be able to be a helpful member of the forum. It is amazing reading a post from someone who is just beginning their fight with pain. How different their perspective is. How much hope they have. How much fear they have when the realization hits that their whole life is changing. I will need to update my profile to include the many surgeries and procedures. Supposedly I was the second person in the USA to have pedicle screws, clamps, rod, etc. removed endoscopicaly (spelling anyone) Yes it was some many years back....when I was still hoping to return to a "normal" life. I would have done anything, tried any procedure; and so I did.I wound up with a nasty torn Dura for my trouble. Idiots tried to stitch it closed. The dura is like wet tissue paper when it is in the sacral region. The story goes on from there. Spinal fluid drain, "super glue patch", blood getting in the spinal fluid, coagulating the tiny nerve fibers, 911 and an ambulance ride with pain that nothing in the hospital could touch. Morphine, Fentanyl, any more narcotics would have ended my life and it didn't even take the edge off. It came in waves. Screaming uncontrollably. I am not a light weight either. Nerve pain for years at that point, fusion through the anterior, posterior revision and many endoscopic spinal surgeries. Both knees rebuilt prior to that due to dislocations. None of that could have prepared me for the pain of blood drying on the nerve fibers in my spine. Death was a welcomed option at that time. They tried dissolving the "dried clumps" with steroids with some success. Of course that was only until they punctured the patch! Now I have a slow Spinal fluid leak that is buried in scar tissue and hence is in operable, or at least the odds of making me worse are far greater than making and repair or even finding the leak. So now if I move around too much or am "vertical" too much I get a spinal headache. It sounds like a large truck is parked outside in the driveway...but there is not....it's just in my head...Plus as a bonus when you are low on fluid some of the nerve fibers can touch where they are not meant to. that is always a special bonus pain. And there is more...so much more. How can I blame my spouse for getting out. I thought it would be different this time. She knew what she was getting into...She helped me through some of it. But it, I am such a burden. She can't have a "normal" life with me. I can't go places, I can't work, I can't sit for more than 10 minutes, nor stand for more than 10 minutes... And even that little bit I pay for with more pain.I can't get out of this life of pain...but she can. I will miss her horribly...But she is already gone. She is no longer the caring special angel that saved my life...well at least not for me she isn't. the cancer got to her. It is so hard to love someone and know that although they did love you, they now have only anger and resentment in their heart for you. If you love someone-set them free..will I ever be free? I'm sorry for this post. I'm sure it is not appropriate, not in the right forum. I really just wanted to see if any "old timer" remembered me but got off on a rant...I have no one to talk to and it was quite painful writing this as I now realize so I can't just delete!!! Please accept my appologies and to the moderator(s) I won't go off topic again.

[stillstANNding]

Hoban, thank you for writing of your situation and your pain. You don't have to apologize to anyone for your honest words. They are heard.

ANN

[Ging]

Hoban,I am from a different forum, I am sorry you have the one pain that you shouldn't have had...heartache. I know that has hurt you to your very soul for your spouse to bail on you, I hope in time you can forgive her. Loneliness can be very painful in it self...I know this. I hope you find some relief from this pain ,both emotion and physical. You can also post on the emotion forum and you may find others who are in similar situations. :) GING

[Mark N]

hoban, I was so hoping that having you missing meant that you had overcome all the spinal issues and living the life you wanted. Sorry to hear that you are back with even worse pain now as the emotional pain of losing a spouse because she can't take any more is tough. Physical pain is bad enough but you are dealing with the emotional pain that comes from chronic pain. Even without losing a spouse CP causes us emotional pain because the life we knew has left. Nothing we can do, at least so far, can bring our life back to us. I wish there was something I could say to relieve your pain but I know there isn't as that peace has to come from inside each of us. It is good to have you back so you can share your experiences and the things you deal with today.

[Melanie]

I remember you too Hoban, well at least your name, not necessarily the particulars as I have trouble with those things. Like Mark I had hoped your absence meant good things, I'm so sorry it was actually worse than ever. So many people don't realize just how much chronic pain affects EVERYONE, not just the one suffering the actual pain.

Please know that you are welcome to post anywhere you feel comfortable! You have spine issues so your post is absolutely appropriate here! We have an on-going "Pity Party" thread that touches every part of our lives, some days it's a happy place, others it's ranting! And as other posted, there is an emotional forum. You post wherever you feel most comfortable, there will always be someone to find you :)

[Ging]

Hello Hoban, I do hope you are better today.
I want to apoliogize if I made you feel you were to post in a different fourm, I have just recently found out that when we have major health issues it affects our whole self. I always stayed in my aneurysm forum until I found I was having other parts of me being affected by it. I have found the people on here to be the most compassionate I have ever come in contact with. I have been going to the new post and hope to welcome people I haven seen before, I am glad you came back because we all have something to offer each other no mater what our health issue is...we all feel pain both in our bodies and in our hearts so we do relate to each other.
Again I am sorry if I made you feel like you were posting in the wrong place, I am so happy to know you came back to get the support you need . I am one of those people that doesn't word things just right.. like I mean it to be. Take good care, Ging

[Leeaelle]

Hi Hoban! I'm a little late in posting this, but I remember you!! I'm an oldtimer from way back, like Mark & Melanie -- and I too was hoping that your absence meant that you were doing well.

I'm so sorry to hear of all the problems you've had. This pain affects ALL areas of our lives, including our relationships --- and it breaks my heart that your wife left. That's kind of hitting below the belt in my book. Jeez, you had enough problems already without her adding to it.

I PRAY that your pain is better controlled! There MUST be something that can be done. I realize the emotional pain is pretty rotten too, and perhaps counseling can help ease that. Therapy for me has always been helpful for things like that.

And please don't apologize for your post -- if you can't talk here, where CAN you talk? I'm glad you came to us. We certainly understand. God bless and please keep coming back, ok? Good to see you again. Hugs, Lee

[puddykat]

Hoban, I don't remember you as I haven't been on BT that many yrs. You're in right place to post, so don't put yourself down. There's also Emotional Support and Under Spinal issues is Pity Party Room....we talk anything there be it good/bad, great place to rant/rave if necessary. I feel so bad for you and your pain levels. Hopefully in near future you'll be able to find some meds that will help you......Please hang in there, hang in here, write as often as you need to; we're here for you!
gentle hugs, kat :)

[Smiling Angel]

Hi Hoban, I remember you from the old forum as well, having been around for more than ten years. I am so sorry for all the pain and setbacks in your health that you have been going through. On top of that, you certainly don't need or deserve the extra heartache of having your spouse leave you in the midst of all your pain. When I read about your torn dura and the efforts to repair it, it really hit home for me. Ten years ago, I underwent my second spinal surgery in as many years, the second one being a lumbar fusion at L4/L5. I went to the best, luckily, so when my surgeon was in there working on my fusion, he found a tear in the dura from scar tissue from my first surgery, and, thank God, he was able to repair it without a problem. My only side effect was that I wasn't able to sit up for over 24 hours after my surgery to prevent spinal headaches. I wish there was something any of us could do to help ease your pain, but, rest assured, we are always here to listen and offer the only thing we can - emotional support. Hang in there, and I hope you come back to this thread to let us know you are still around and participate in this forum, or any other forum in which you feel comfortable. Offering you lots of gentle cyber hugs and prayers that we can at least give you an outlet for your 'rantings'. That's the best part of being here, knowing we can express ourselves, complain all we want and still find acceptance here.

[marijo]

Hello, I don't post here much either.I sympathise with you pretty much 100%. I had a botched fusion L4/5 in 2003. Screw went through spinal canal just missing cord. Painful, so three years later, at another hospital The metal was removed, and More put in at L3/4. The damage had been done though and all the nerves were jiggered. I had several prolapses, and lost reproductive organs, which I no lover need, and large intestine, and everything below it, so I don't absorb medication well, or food, and I have megaloblastic anaemia and under active thyroid, and chronic chronic neuropathy and mechanical pain, and to crown it all, permanent tinnitus. I agree with you that it wrecks relationships, because pain that doesn't leave you stays in your mind all of the time, and gets you really down. I don't think my husband will leave me, but he never asks me how I am. I've had about ten major ops, and a few little ones also, and only once did he come to take me home. He does work abroad so its not all his fault. The night before I had my bowel removed he called me in hospital, asked me what I was having done, and asked me could'nt I change my mind!!! Now I try very hard not to talk about it, and he never asks, but it still butts into our life, because I don't feel great a lot of the time. I am lucky though because I have four fantastic children, all grown up, and even though I don't see much of them, I get on terrifically well with them. We have moved so far apart that we are like strangers who just happen to live in the same building, which is large, so we can go for hours without seeing each other. All our habit are different. He is not very well at the moment, so has spent most of the last three days in bed asleep. Normally he sleeps for ten hours a night. I sleep for for or five on a good night. For me its not all bad, because most of the time I have a good sense of humour, and I try very hard to distract myself, and keep busy, and it does not take a lot to make me happy. Its great to recognise some of the old names. Hi Jacqui, will mail you soon, and Mark, Hope you are OK. I recognise Your name also Lealle. I first started posting here in 2002. Ten years ago. There have been some changes since then haven't there? Hugs to you all, and Hoban, I hope you feel a bit better soon.

[Mark N]

Marijo, It is good to hear from you. Our spinal issues and pain issues really puts some strain on our relationship. After 15 years my wife is finally coming to accept my disability but I don't really blame her as she has some mental issues IE Anxiety Depression, and it was hard for her to adjust. If we were like many other couples we would have been divorced already but each of us have been willing to try and work through our issues. What makes it bad is I feel bad about what my limits and pain levels cause her but their isn't any more I can do to make it better. Mary I am sorry to hear your husband is still not very able to adjust to all the medical issues you are dealing with. It is good that you have a good relation with your kids and grandchildren. I have a two year old grandchild and she makes my days much better when I get to see her. I am thankful they have decided to live in our small town so my wife and I can see her and the parents [my daughter] when we want.

The thing with our spinal issues and chronic pain is that it hits both of us in our relationship. The sad thing is that our spouse could never have to deal with it at all if they just left us. I am thankful that my wife has stuck it out with me because her life would be much easier if she went on her own way. I couldn't do it because I still love her and she still loves me enough to stay.

Mary, I hope you come around once in a while as I miss having you around.

[hoban]

Forgiveness

Hoban,I am from a different forum, I am sorry you have the one pain that you shouldn't have had...heartache. I know that has hurt you to your very soul for your spouse to bail on you, I hope in time you can forgive her. Loneliness can be very painful in it self...I know this. I hope you find some relief from this pain ,both emotion and physical. You can also post on the emotion forum and you may find others who are in similar situations. :) GING

I hold nothing against her. I completely understand...I have been through it once before...Only it was a complete surprise...Nothing leading up to it...just one day "Life is too short to be held back by someone else's pain. If I stay with you I will wind up hating you" and so she left. This time I am blamed for not being "Man enough" to tell her she should leave me because she deserves a better life than what I can offer. I completely understand and I wish it wasn't so. Many men would not be kind or supportive after they have been discarded. I just wish she didn't have the "need?" to hurt me. I know she is very angry at how life has turned out and I am to blame for all.....But even in a moment of anger therre are some things that can never be said as they can never be taken back...I appreciate your reply and I thank you for your words.

[hoban]

hoban, I was so hoping that having you missing meant that you had overcome all the spinal issues and living the life you wanted. Sorry to hear that you are back with even worse pain now as the emotional pain of losing a spouse because she can't take any more is tough. Physical pain is bad enough but you are dealing with the emotional pain that comes from chronic pain. Even without losing a spouse CP causes us emotional pain because the life we knew has left. Nothing we can do, at least so far, can bring our life back to us. I wish there was something I could say to relieve your pain but I know there isn't as that peace has to come from inside each of us. It is good to have you back so you can share your experiences and the things you deal with today.

Thank you for your insight. It means a lot to me that you actually remember that I was a member so long ago. As I have moments of clarity I will try to help others as they can certainly draw on the data base of practical knowledge I have unfortunately accumulated from the vast amount of surgeries and procedures that have been done to me. Right now it's day to day. When it is night time, and quiet or when I wake up and remember I am alone is when the tears ultimately flow. After all these years there are times that I just can't believe that this is how my life turned out. And time is flying faster and faster...... Thank you again for your wisdom.

[hoban]

Thank you to ALL... i DO RECOGNIZE SOME NAMES AND HOPE FOR A BIT OF WELLNESS FOR ALL. i WOULD LIKE TO REPLY PERSONALLY TO EACH WHICH WAS MY INTENT, BUT IT IS LIKE RUNNING A MARATHON FOR ME AT THE MOMENT. pLEASE KNOW THAT i HAVE READ AND APPRECIATE EACH AND EVERY ONE OF YOU FOR REPLYING TO ME. iT IS THE MOST COMMUNICATION i HAVE HAD IN...WELL ...TOO LONG...i WILL TRY TO VISIT MORE OFTEN AND THANK YOU SO SO MUCH FOR CARING ENOUGH TO WRITE. i KNOW IT ISNT EASY FOR MANY OF YOU AS WELL.

tHANK YOU,

HOBAN

P.S, Sorry for the caps....i just can't retype the whole paragraph!!

[Mark N]

Hoban, I was hoping you were having a good weekend, good in our terms that is, and not suffering so much. Sorry to see you are in pain and have a difficult time at the computer.