Friday, June 01, 2012

Dockside Introduction

dockside
By dockside Wednesday, October 15, 2008

SmileI can not tell you how talking to others who are in pain 24/7 has improved my outlook on life and general well being.  Below is my introductory letter to anyone.  Thank God Betty answered in such a caring and friendly way.  This is only the tip of the ice berg of course but it lets you know a bit about me.

 

Introduction letter

Hi, This is my first time on any online forum.  That is how desperate I am.Cry

 

Before June 4th 2006 I was a very active 54 year old woman, ladies golf captain, competitive bridge player, computer specialist, wife, mother of 7 adult children (3 mine and 4 step), badminton captain, volunteer etc.

 

I have had back issues since I was 17 with 2 minor surgeries, one at 16 and one at 17, but I have always managed to overcome the pain, or muscle spasms or what ever.........no nerve pain involvement.

 

I injured my back on June 45h gardening and digging.  The nerve pain (sciatica) was acute with muscle spasms that didn't allow me to stand up.

 

I was in bed for a year and a half almost completely except for doctors appointments, therapies and medical tests.

 

  • My marriage fell apart and ended last November leaving me pretty much alone.  I am still grieving the loss of my marriage and husband. 
  • My seven children have their own lives all over North America. 
  • My parents are still alive and live near by.  They are more active than I am and they can't understand why it is going on so long. 
  • My 2 siblings have their own families and their own health issues to cope with and don't live nearby.
  • My close friends now call only occasionally.......they have moved on with their lives and they don't know what to do.  If they could only understand what a gift to me it is just to have some one to listen sometimes.  They don't have to try to fix me.......just listen so that I can let some of my frustrations out.......not at them just release it.

 

Now, after 2 1/4 years and many MRI's the diagnosis is a combination of things, of course. 

 

The neuro surgeon thinks that I have central pain from past surgeries when I was 16 & 17 which is just now giving me symptoms because of the injury to my Piriformis muscle while gardening. I have also had 5 different abdonminal surgeries which has pretty much destroyed my pelvic floor muscles.....to say nothing about the adhesions.

 

The Physiatrist (for those not from Quebec, this is a doctor specializing in Orthopaedics but does not do surgery) agrees with all the pain medicines for the Neuropathy and he gives me cortisone shots in my hips and at different levels of my spine regularly.  The shots help alleviate the acute pain for short periods of time.  Sometimes this works better than others.  He also agrees with the twice a week treatments given by my Osteopath.

 

My neurologist is mostly just interested in any changes to my nerve damage and function.  (also the changes in my MRI for degenerative disk disease and foraminal narrowings). She is in charge of the medication aspect of my treatment along with my family doctor.

Comments (39) |  Add comment
Morgan
Morgan
10/15/08 3:22pm

Hello, my name is Morgan. I'm 16. As you and everyone else on the site suffer from chroic pain. It is really hard to live with such agony. Anyway, I would like to be a friend and an encouragement to you. Here at chronic pain connection, we understand what you are going through. Feel free to write me anytime. I'm usually on the site daily. Hop0e to talk soo! : )

                                                  Sending prayers & wishes of good health,

                                                                     Morgan

dockside
dockside
10/16/08 11:59am

Hi  Morgan,

Thank you for your encouragement.  I am sorry that at your young age you are having to deal with chronic pain.  I hope you don't have too much pain today.  It is not so bad for me everyday....each day is different which is why I can't give up hope for the future.  It is just so hard alone.  This web site and the friends I have made here have made a huge difference in my quality of life.  I wouldn't have believed it really but it is true.

 

If you want to talk to me about your problems, I can be here for you too.. just write to me any time.

 

Thank you Morgan,

Dockside Deb

Morgan
Morgan
10/16/08 3:40pm

 Dockside Deb,

             I'm glad to hear that I could be of some encouragement to you! Today (pain wise) was a normal painiac day. Same old pains. Anyway, I was so delighted when you mentioned that you do have some good days. Going through a trial alone is hard much less if you are in pain 24/7. Well I will talk to you soon! : )

                                                                   Sending prayers,

                                                                      Morgan 

deborama2
deborama2
10/16/08 4:11pm

D.S.  dear soul.........  that is a beautiful introduction.  I have not suffered alienation from friends or family yet, but I am waiting for it.  Talk to you in the grind hon...........

(((((((((((Deb))))))))))

DeboramaKiss

dockside
dockside
10/16/08 4:52pm

Thanks Deborama, talk to you later.

Anonymous
Sunshine
10/16/08 11:28am

Hi,

 

I can empathize with what you are going through.  I suffer from migrains practically on a daily basis for over 30 years--I am a 58 year old female with two grown sons and two step children.  My migrains interfer with my life, but after years of going everywhere for help including alternative therapies I have learned on my own some things to help with the pain through experimentation.  I even recently found a way to rub my neck to help with the tightness I seem to always have.  For years I went to work feeling like I didn't see how I could make it through the day.  There were times I just wish someone would shot me to end the pain.  Fortunately, I was put on imatrix and that really helps, but I can only take that 3 times a week.  I work as a counselor and I have reduced my hours.  I have learned my limits as far as doing things that will aggrevate my pain.  However, I have learned my limits and try not to do things wich will aggrevate the pain.  I agree with you that people don't want to hear about your problems with pain.  I think they simply do not understand.  I felt my first husband thought I enjoyed having pain at time which only made things worse.  Fortunately, my second husband is much more supportive and understanding.  It is isolating feeling this way when you know others do not want to hear about it or try to understand.  I have learned to focus on other things and accept that I do have this problem, but I haven't given up on finding something that will help me more.  I made the decisions years ago that I am not going to let my pain rule my life and do the best I can and try to focus on other things.  I use visualization to help with the pain and that can do wonders.

dockside
dockside
10/16/08 12:13pm

Hi,

Thanks for your kind understand.  Migraines are debilitating.  I too suffered from daily migraines from age 34 until 2 years ago.  My migraines are mostly triggered by weather pressure changes.......up or down. 

 

I tried EVERYTHING to alleviate them.......specialists and their programs and drugs etc. etc. Nothing worked until I hurt my back and was put on Lyrica.  It was the only good thing about my awful situation.   Lyrica took my migraines away completely.  Now I take Neurontin instead of Lyrica.  It has the same good affect except I occasionally have break through migraines but rarely.  The sciatica and back pain now rule my life.  But I agree, we try to do the best we can to continue as "normal" a life as possible.  I am adjusting to my new normal but alone. 

 

Thanks for commenting.  I wish you happiness

Mattsmon
Mattsmon
10/16/08 1:47pm

You and I could be the same person.  Chronic pain robs you of so many things in life, it is almost what a prisoner would claim as cruel and abusive treatment.  I can remember what life used to be like before this and that almost makes each day even more unbearable.  I'm sure you understand what I mean.  I am so sorry you do not have a good support system.  Thank God for my husband, he is a saint and I say that from the heart.  My family, like yours, does not really get it.  Ok, so it's been 14 years since I had the first neuro surgery to remove a tumor from inside my spinal cord.  All these years later it has been many more surgeries and the latest was this June.  I thought I was having a kidney stone and I could only wish it actually was, rather than what it turned out to be........pedicle screws moved into soft tissue, bone spurs growing around all that and what ever else it took him 4 hours to do.  The outside world (i.e. "normal" people) would think that with all that you would be better.  What I  would not give for "better", as I'm sure you would as well.  I'm so sorry you lost your husband and that your children are not around to be an immediate comfort to you.  My mother sounds so similar to yours "Just grit your teeth and pull yourself out of it!"  Do they not know that we would be the first ones to do it if it was possible????  I feel so bad for you.......when life turns into basically being in bed and only getting out for doctor appointments, it makes  you wonder how long must this drag on?   I'm sure you have read that a young lady who belonged to this site took her own life this past week.  My heart aches for what she must have been feeling.......I try to remember that as bad as we are, there is always someone worse.  Would I  have ever traded places with Christopher Reeve?  No......so the pain still reminds me that I am alive.  Please try to hang in there, and take it one day at a time.  Don't let your family bully you---ignore them when they start in, or simply say, "Mom, count your blessings that you have the good fortune to be healthy."  I know that we all feel like 5 year olds when talking to our parents, but remember that you are a grown up now and DON'T have to accept that.  I sincerely hope and pray that you will get to feeling better soon!

Mattsmom

dockside
dockside
10/16/08 3:41pm

Dear Mattsmom,

I am moved to tears reading your letter to me.  How luck I am to have found this site and all of you.  You are right, it could always be worse.  It sounds like you have been through the mill and you understand EVERYTHING.  You are also right that the memory of being able to be who I used to be is still too fresh and I see others having the freedom to choose to do what they want.  It just gets lonely and my tricks of pain distraction are getting boring. 

 

As I read all the wonderful letters to me from so many of you who suffer daily I still wonder why it is so hard for my old friends and family not to accept me and support me as all of you do?  More than that, I want to be a part of their lives even if I can't be who I used to be.

 

I sincerely thank you for writing to me and encouraging me so much.  All my very best thoughts go out to you in your situation.

 

This quote is what I feel about this web site.

 

"As you give love out, it's received and reciprocated--and it grows. That's the beauty of it.  Love is an energy. You can feed it to people, and they in turn feed it to others, and eventually it comes back."

-Hill Harper

sherry
sherry
10/17/08 5:04pm
Amen to your e mail. I so sympathize with all you said. Sherry
MBB
MBB
10/16/08 2:28pm

Wow, I am so moved by everyone's stories.... I have one similar.  How sad that we are all living with  such life altering pain.  I offer my support and friendship to any of you and hope you'll be there for me.  Michele

dockside
dockside
10/16/08 3:44pm

If I can help you in any way Michelle just contact me.  I will always listen. 

MBB
MBB
10/16/08 3:58pm

Hey dockside, I appreciate your response.  I was diagnosed with Rheumatoid Arthritis ten years ago when I was 35.  I was at the height of my life! I was healthy, happy and a very, very active person.  Now ten years later I am all but housebound, my friends have dwindled but a lot of that is my own fault.  I find that since I can't participate in their activities I close myself off.  My family is very supportive for the most part but I have learned that they really don't understand the concept of "chronic illness"  or what we all are really dealing with.  I am still going through all the stages of grief from having lost my way of life.  I can no longer work so I don't even have that outlet and boy do I miss it!!!  So, I am available most days and would enjoy corresponding with everyone... Michele

dockside
dockside
10/16/08 5:07pm

Hi again,

I am really stunned and appreciative of all the responses to my posting.  In addition to what is going on with the sciatica I also have bad flare ups of  osteo arthritis.........nothing compared to what you go through with rheumatoid but I understand joints that are now deformed and not working properly.  My joints started acting up when I was 35........now 20 + years ago.  At that point I was told I was too young to have this.  Oh well, the joints are the proof.  Usually my bouts are 2-3 times a year for 3-12 weeks.  It really increases the pain of my sciatica and back issues when it comes but at least I know (when I can't stand to be in my skin) that these flare ups will end for a period of time unlike the 24/7 pain.  What a mess I sound like but my body is my body, right?Smile

 

I would like to communicate with you too but I am too new to know the best way.  I think you can click on my name and post a private message but I'm not sure.

 

Bless you and I hope today is a tolerable day (relatively speaking).

Squeegi05
Squeegi05
10/16/08 2:30pm

TOGETHER, WE ARE NOT ALONE.  I KNOW IT FEELS THAT WAY SOMETIMES BECAUSE YOU CANNOT HEAR OR SEE ANYBODY WHO IS COMMUNICATING WITH YOU, BUT WE ARE ALL IN THE SAME SITUATION.  IF YOU REALLY TRY, YOU CAN ACTUALLY FEEL A WARM FEELING WHEN YOU READ SOMEBODY'S RESPONSE. THAT FEELING IS HEALING FOR YOU, BECAUSE YOU ARE NOT ALONE. WE ALL FEEL THE SAME FEELINGS THAT SEEM UNBEARABLE SOMETIMES. YOU ARE NOT ALONE.  WE ARE ALLWAYS HERE FOR YOU, ALLWAYS!. WE WILL HELP YOU THROUGH THIS TIME OF TRANSITION IN YOUR LIFE. LET US HELP YOU, YOU ARE NOT ALONE!

 

SCOTIE

dockside
dockside
10/16/08 3:45pm

Thank you Scotie

Denise C.
Denise C.
10/16/08 4:21pm

. . . who understand are so important.  I, too, have problems with my family and friends understanding the full scope of chronic pain and all that comes with it. I think we are often perceived as being "lazy" and unwilling to try alternative methods. And although some days we just want to pull the covers up over our heads, it is a good thing we can turn to this forum for support.

I wish you good health,

Denise

dockside
dockside
10/16/08 5:17pm

Hi,

I think you are right about being perceived as "lazy" or even as a hypochondriac.  It makes no sense to me as my closest friends and family know what I have done with my life prior to this condition.  Wouldn't it be great to write a generic letter (with contributions from many of us) to friends and family to help them accept and support us better?  I know my family would if they could "get it".  Or perhaps one of the experts could guide us to web pages for friends and family to understand what not to do?  Like blame us for what we can not control..........  I need them in my life now more than ever, don't you?

Anonymous
Linda
10/16/08 4:26pm

Dear Dockside,

I have suffered with a herniated disk for over two years now. One surgery, lots of P.T. and still on Vicodin daily.  I have come to the conclusion that I just don't tolerate pain at all.  I had a mastectomy in July due to cancer which I KNOW was caused from stress from constant back/leg pain.  When the Dr. says he's afraid of addiction from the Vicodin, I just think "so what".  If your in pain and would rather die, so what if you're addicted.  I wish the medical profession were more sympathetic.

dockside
dockside
10/16/08 5:26pm

Dear Linda,

I am so sorry to hear about your mastectomy.......what an additional worry and burden for you.

 

I agree, addiction is the last concern when you just can't get away from the pain long enough to even breath properly.  Is your doctor a pain specialist?  They seem to understand a bit better than most doctors.  I am lucky, my family doctor and neurologist are supportive about the pain medications.  I am very careful to follow the dosages correctly..........so what is the problem?  As long as you are not abusing the prescriptions or getting the meds from all kinds of different doctors. 

 

Good luck Linda and you hang in too!

Jo
Jo
10/16/08 6:48pm

I read your intro letter and a few of the comments.It seems like we all have the problem of friends and family just going on without us.I have read just about everything I come across as far as this website for chronic pain.Why don't they get it.They sit in their wealthy homes with pools which by the way I helped them get.I still live with my wonderful husband of 25 years and we are still in the same duplex he built us when we married.My daughters were 7,13,14,at the time I married Bob.Now they are 39,38,and 33.I keep hearing you should go to a chiropractor.I think their memories are so short.I tell them I did for over 20 years.Don't you remember that I got you a job at my chiro's office and that is how you got your scholarship to being an xray tech???She seems to have load of compassion for everyone but me.I just dont get it.We struggle so much just to fit in.Sure we aren't what we once were but aren't we the ones who brought those children into this world and sacrificed so that they could have more than what I did.Now I am treated like a drug addict.They are real generous with their opinions.I wonder what they would do if just sleeping presents a great problem.Our muscles heal when we sleep.That is why even if you can sleep we usually never reach REM.So we wake up hurting worse than when we went to bed.What a shame.....Jo

dockside
dockside
10/16/08 10:00pm

Hi Jo,

I feel your frustration and saddness, like mine. 

 

I have learned a lot about myself from everyone's supportive comments, just in the short time of this posting.  I think I am contributing to this cycle with my friends and family too.  I don't know how to communicate properly when my self esteem is so low from the years of irregular sleep patterns and survival techniques.

 

I don't know if this applies to you but I can see that I am going through a "good" period right now.  My pain is averaging at 6ish.  When the pain is at 8, 9, or more (I will never say 10 no matter what Smile), there is no room for anything else.  Every minute is consumed with pain.  I can't think about what I used to do or what I want to try to do now or even who I am missing.  The pain is all consuming.  But now, it is almost tolerable, even if I haven't yet had a proper sleep.  I can see what I would like to do if, if, if.  I would like to try to meet the "girls" for lunch but can I get through it?........can I cover enough that attention isn't brought to me?........probably not yet.   I know, one bad move, reaching for something the wrong way or lifting something without thinking about the consequences and I am back at square one.

 

I don't know how to tell the ones I love the most how much I love them, miss them, and please include me.  I have said this as I am sure you have too but something gets lost between how I say it and how they hear it.  I wonder what, if any, response would be if "they" read my postings and all your wonderful supportive letters to me.  Of course, I would never violate your privacy by doing this..........but I wonder?   Are they too involved with their lives to "get it" ?  Or would it change?

 

Thanks for writing Jo

Jo
Jo
10/17/08 7:12am

Dockside hey,yes I have read some things about you too.I sometimes get into a certain question and get ineterested in what ever caught my eye.And then after a while my back starts to hurt and I think I have to answer what my original purpose was.I have thought about that very same thing.I have a daughter,Bonnie.I have sent her videos from the American Pain Foundation.This has been going on for ten years.She is so stubborn that I cannot have her children spend the night with me.We both smoke and she doesnt like that but we said we would go outside while the children are here.It seems like to me and to my other daughter that when ever I meet the criteria for having them come over she raises the stakes and just makes it that much harder for me.Then get this.She says she isn't keeping me from them.I can see them when they have surfing lessons at 7:30 in the morning.I can't get to the bathroom that early.I have gone to all their soccer games and ball games to the extent that I was not even seeing my 4 other grand children.Anytime her in laws want them it is always ok.Even to the point of taking them to W.Virginia for 2 weeks.Even though her mother in law smokes from time to time.I say why is it ok if she smokes but not me?And she always has an excuse.Always when I ask to come over they have made other plans etc...I stopped trying because Taylor at about 13 or 14 made a scene at our annual Christmas Party and asked to go home with us.They said no,you haven't been home in 3 days well they had been at his sisters house.Who by the way has had 2 of her children in drug re-hab for smoking cocain and crack.But my house is a worse enviroment for my own grand-children?I told Taylor we would work it out.I havent been able to keep that promise and that hurts me.But it isn't my fault that her parents say she cannot spend the night.When Bonnie was going to radiology school and needed someone to pick Taylor up from day care or what ever.My smoking and my medications were never brought up to be an issue.And then Payton is ten years old.He got to spend the night one night and she had her husband come over with his own key,and took Payton at about 7 a.m.And didn't even let me know.I asked why this was done.We had not even had a chance to do anything with him.And yes my daughter continually says I have changed.That she can tell I am on drugs.I also am so self concious of stumbling,or walking sideways like a crab or drop something.What ever I do it is always attributed to "drugs" I send her pamphlets informing her that slurred speech and a drunken walk are symptoms of Fibro.And now in the last ten years I have had 29 oral surgeries.I am def at my worse right now.So I can't fight back if you know what I mean.I guess it would depend on the person.I hate to advise you and tell you go ahead with it.Because I never give up hope.As my older daughter told me she is never going to say she is wrong.So now Taylor is about 16 in November and she can come over if she wants to.But you know teenagers really dont want to hang out with their grand parents.They want to be out with the gang and that is normal.So I have tried to just learn to except it.How ever we have decided to agree on disagreeing and not bring it up.I can't come take them out to dinner as she suggest.I haven't even got teeth in my mouth right now because for the last year and a half I have had pain and infection with these oral implants we paid 15 thousand dollars for them.We have friends that are ill.We have a lot going on just at our house.I am lucky that My youngest daughter will bring her kids over anytime I ask and if I start to tire she takes them home.And my Amy's children are 21 and 17.So she just has a teen boy Cody at home now.And my oldest Grand daughter Jessica is going to have a baby so she is an adult.So on Sundays my husband started cooking healthy meals,as he said get some good vegggies and so on in my system.The only people who still come are Amy and Scottt and sometimes Cody comes with them.Rachael just had a baby so her life is kind of overwhelming right now and she has medical issues too.Thank God I have the most wonderful husband in the world.His birthday was today and he turned 50.I am 57.We have been married 25 years and we both love each other very much.I know a lot of women who are chronically ill,or cannot work often lose their husbands.And that is like being struck down with a thunderbolt.A friend I have who we talked every day.Or I would just ride over unannounced and we sat in recliners together and talked for hours.Her husband left her and she is so overwhelmed she won't even give me her phone number.Which I am sure is only because her life is so overwhelming that she just cannot deal with other peoples problems when she is hanging by her fingers and toes.So you are asking me a question that I have not had much success with.I do know that I should have never even told people that I take narcotic meds.Society has not even accepted us all the way yet.It is like a democrat and a republican.They will never agree and just argue.I have found that I have been able to send the AmericanPainFoundation.org very helpful with explaining with the aid of CNN videos saying to the public just what we have been telling them.I would try that first.They had a video of a mother and daughter(15) who both had Fibro.The teen went on to say that she was acccused of doing it for attention and also was told that her pain were growing pains.And that she suffers from being alienated by her peers.And the mother talked too.It is very hard for healthy people to understand.I used to hang out with my mom and aunts and we played cards.It didn't matter to me that they were older.But my mother moved to Panama City atleast 5 years ago and the 2 aunts died.So I think we dont have anything to look forward to.Even if it is just one day a week.We have no schedule like when we were still working.I know that I have been in pain most of my life.But it got to the point where I just had to walk out one day.Mentally I was just petrified constantly..I am lucky that I have a husband who can pay our bills.He always has.My money was for the girls and groceries or what ever I wanted to buy to spruce up the house.I have great doctors.Especially my psychiatrist.We worked together at Mayo Clinic so I have had the best of doctors.But they rooted me out when my health went down hill.I only got to work there 7 years.I had 2 accidents there that ruined my lower back.I never got my benefits that were promised and signed.Mayo has gone down hill.All the good doctors left.They had a conscience.I have had a hard life.I was a mother at 17 and again at19 and then my husband left me for a 16 year old girl.I was changing diapers when my class graduated.I didn't even know how to write a check.So since my sister was a hair dresser,she said why not do that because it is really the only thing as far as a career that did not require college.And that was a shame because I made straight A's and 1B every semester.So I did hair for 21 years until my neck just could not take it.I worked as a dispather for the City of Jacksonville which I loved but Rachael was only 3 then and you cannot work nights and leave a 3 year old alone to fend for herself so I went back to doing hair.I had to move in with my parents when I was about 29 for 5 years.I went to the chiroprator on my day off for about 20 years until he told me that I needed muscle work that when he did an adjustment when I got off the table he said he could hear all my bones go back to what they were before the adjustment.He told me I was just wasting my money.He was a very kind Christian man.In fact I got Bonnie a job working for him.I also got her the last free scholarship at Baptist Hospital to become a radiology tech.So she forgets how she got that big house with a pool and new cars etc....It is a shame because when I die it will be too late to say I am sorry.I feel sorrier for her than for me.I can put my head on the pillow at night.I have lead a moral life.I went to the same church since I was 2 years old.I even served 14 straight years as a deaconess.They wanted me to become an elder.Well elders serve communion.There was no way I could carry a tray of wine glasses and communion bread.But I taught Sunday School.I am not saying I am a goody goody.But my father was the choir director and had a beautiful voice.I played piano for him to practice his solo's at church.My childhood was good.But I had so many ear infections that by the time I was 5 years old I was legally deaf.They did surgery and I hear fine now.Then when I turned 12 and started my period I had the most dreadfull cramps and had to always come home from school.They were so bad I threw up.My neck has always hurt me.But back then when other people said they had a headache or their neck was tired I just assumed that they were hurting as much as me.It took me a long time to realize I was different.My dad died 12 days before I married Bob.So that was the happiest and saddesst day of my life.I had a wonderful father.My mother was a good mother for children etc....But as an adult she continually puts me down.Now that she is in Panama City with my sister who doesn't believe in the medications I take.So now my mother is mocking my sister.I tell ya dockside we just cannot win.My computer has been acting up.I tried to upload some photos and they turned out real small.All but one of my grand daughter Raven.She is by-racial,so is  Elijah 10 yrs.And the new baby Micah is too.That was a first in our family and I just told them who ever had a problem with it just wouldn't be a part of my world anymore.I love my kids and grand children.They are my blood too.But the black side of their fathers side will not even pick them up or hold them.How sad is that.I cry because white people are cruel and so are some black too.If your toddler grandson held his arms out to you to pick him up could you do as she did and turn her back on him and walk away.So the only love they get are from white people on our side.They play with all races.And I hope in a couple of generations the hate will stop.Just like by the time we are at the end of our lives.People in chronic pain will be treated much better.Just like when aids came out.Imagine how isolated they felt.No one even wanted them to touch them.People are cruel and I am sorry to say that is human nature for a lot of people.Kick you when you are down.Well dockside I guess I better wrap this up.It probably will take you all day to read.But I am glad we have each other.That is a start.I too have thought to let other people read our post but legally you could have a problem.We never know who knows who.So I guess for now we have to be content to just correspond with others as ourselves.But you hang in there and the next time your pain is bad.Say a hundred,a thousand,that will get their attention.The sqweeky wheel gets the oil.Take care of yourself and thanks for wanting to know about my life.Blessings to you,Jo

dockside
dockside
10/17/08 10:06am

WOW Jo!

It is so difficult to write about your life in one page.  I think I may be mixed up about some of your grandchildren but isn't the point is it?  Families are so complicated and I am just learning about our roles as grandparents.  I guess I should count my blessings that the drugs I am taking have not become and issue yet.........at least not that I know about.  Perhaps this is why some people have withdrawn from me but they haven't express it directly to me.  I will have to think about it.

 

It sounds like you are VERY lucky to have such a supportive husband.  I think this is such a blessing and I miss that very much.  I couldn't quite figure out how many children and grandchildren you have but as the grandchildren grow older hopefully they will come to you as adults.

 

I guess this is what it is all about...........hanging in..........hoping and praying for the pain to change.....the symptoms to lighten.

 

Thank you for sharing so much of yourself with me.  I am very grateful.  Take care of yourself and your husband, he sounds like a keeper.Wink

 

Dockside Deb

Jo
Jo
10/17/08 1:06pm

Thanks Deb,Sorry to make this so short.I know I write all over the place no wonder you are confused about my kids and grands and gg.I have 3 daughters.Amy Bonnie and Rachael.Ages 39 38 33.Rachael just had the new baby.So Amy and Bonnie have the older grands.Jessica is 21 Cody is 17.Bonnie's kids are Taylor 16 and Payton 10.Rachael has Elijah 10,Raven 6 and Micah born on the 11th.Now Jessica who is my oldest grand is pregnant.And we just found out last night it is going to be a girl.Which is what we all wanted.I have a sister named Rena and a brother named George.Rena is 61,looks like Elizabeth Taylor.George is the youngest and he is 52.So I just wanted to get the family tree out of the way.Oh my mother is with my sister now in Panama City and my mom is Peggie age 79.My brother lives near Boston.And my dad passed away when he was 59.So there you go as far as I can tell.I wouldn't expect anyone to keep up with all of them.I get confused and they are mine.Ha Ha.It is so beautiful outside today.And I have been on the computer since 6:30 a.m.so I am going to go.I just want to answer everybody while I am having a good day.I hope your day is good too.Cya soon.....Jo

sherry
sherry
10/17/08 5:01pm

My name is Sherry, I live in Texas. You sound like you have alot of what is wrong with me, and just happened 4 years ago.

I miss working and we had to sell the house, because it was way to much for me to handle. So we live in a gated community and its very nice knowing that someone is around if needed.

I turned 57 today and I would give anything to be pain free and to just walk the mall..............

Anytime you neeed to talk, I am here for you.

 

Sherry

dockside
dockside
10/17/08 8:08pm

Hi Sherry,

I am 56......what does Oprah say.......the fifties are the new 3o's or something like that! Undecided If only, right?

 

I am trying to stay in my home for now......everything I need is on one floor but it is hard to find help for the maintenance type stuff.  Is it better for you since your move?

 

As you can see from the other postings, there are a lot of us trying to cope with 24/7 pain.  I didn't realize how much of what I struggle with is "normal" in the pain world.  I can't tell you how much it has meant to me that you and others have taken the time to write to me and support me.  I guess here, at this web site, we support each other.  So if you want to write to me again feel free.

 

Thanks so much,

Dockside Deb

dockside
dockside
10/17/08 8:27pm

Hi again Sherry,

I forgot to say HAPPY BIRTHDAY !!

Surviver48&counting
Surviver48&counting
10/18/08 12:14am

Hi, I am with you honey and you know what?  Why have your Dr's not offered you pain medication?  I know some people are against it, but, they have NO idea what it is like, how it destroys your life, limits all your activities, and YES drains all of your energy.  I take percocet 5mg 2Xday and a drug called lyrica (I have also been dx'ed with fibromyalgia) which by the way is gaining recognization as a real medical condition here in the US.  I am a professional Mental Health & human Service worker with a real degree in which I studied very hard to obtain.  I know alot about addiction to pain meds. and the whole anti-narcotic crap. I was also a nurse for 14yrs.  My philopspy is--- if there is a medication on market that has been approved by the FDA, and other's are being perscribed it for chronic pain conditions, ALL chronic pain patient's should have a right to the same treatment, be given the option for narcotic pain control, be given the information about the best one's (there are short acting narcotic's as well as long acting one's)  I just think you may want to consider speaking with your Dr. about this issue.  It sounds to me like it is time for them to DO something to help you NOW.  Even if it is a trial to see how you feel with pain control.  I know my energy level is much better with pain control, I do not get high, all it does is dull the pain so that I can do about 70% of the things I want to do such as work (part-time), shop, eat out, go for a walk, do things with my 19yr old daughter, you get my drift.  Before pain control or without it, I am miserable my pain level is 7-8 (out of 10), I'm sure there are lots of people out there who will respond to this advice/suggestion hatefully, rudely, etc.  The fact is at my worst I did not want to face another day like I was and yes ending my life crossed my mind more than once, and yes I also have a very good pychiatrist.  His view is that I will not improve without pain control. I am an CANADIAN with dual, I'm from N.B. So I really noticed your post.  Hang in there and be assertive I know I had to be before they would do anything that really controled/helped the pain levels.  Write me back OK.  Sincerely  Janice McL. B

dockside
dockside
10/18/08 3:56pm

Dear Janice,

Thank you for writing to me.  You are right and it is important advice that you have given me and anyone else who reads your reply, but I am on what I think is a boat load of medications and have been since the beginning.  I guess I should have shared this information too but probably, at the time, I was a little shy to do so.  At first I fought the idea of the heavy meds but the nerve pain won and I gave in. 

 

Initially I was on short term meds Supedol and Flexeril and Lyrica.  My GP was hoping it was going to be a 3 - 6 herniated disc episode...No such luck.....six months later at the Neurologists and after MRI's & EMG tests, she prescribed Oxycontin (40mg, every 8 hours and Neurontin) as she didn't think the Lyrica was giving me enough relief and the Oxycontin's slow release would give me longer relief periods.  The Neurontin seems to help me a little better than the Lyrica but everyone is different.  On my next visit, 3 months later she added Effexor for the depression and nerve benefits.  This medicine has allowed me not to be in agony but my condition causing the nerve pain continues.  It is a combination of  3 small - medium hernias, piriformis damage, central pain & very poor pelvic floor muscles, thought to be from previous surgeries.  Anyway,  my meds haven't changed too much over the last year and half except increasing the Effexor dosage.  My leg function has deteriorated along with my balance.  NERVE PAIN is a bugger!  I had never had this kind of pain before.  It is not just a back ache which is what I can't seem to get across to my friends and family.

 

Just this week,  I will be switching from Effexor to Cymbalta.  Apparently, this new antidepressant has very good results in helping neuropathies such as mine.   My neurologist still doesn't think I have good enough pain relief so she is trying this.  I am now in the process of weaning my Effexor dosage to half before starting the Cymbalta.   Of course, being a new drug to Canada, the Quebec drug plan does not cover Cymbalta except for Diabetic Neuropathy so I was refused coverage.  Fortunately, I have a secondary drug plan which has approved payment so my fingers are crossed.  I HATE the medicine that I take now and stick strictly to the prescribed dosages but let's face it I have to be hooked on it after so long.Frown

 

So there you have it new friends.....my prescription history. 

 

Thank so much for writing Janice.  If you want to send me a private message you can click on my name.  Take care of yourself and best of luck.

Dockside Deb

freedomschild
freedomschild
10/18/08 1:58am

hi,

 

I wish I could "pass through" your being, for it is only in that way that anyone will ever know what it means to be living with Chronic Pain -- especially alone; and after a time, that's pretty much the way it is.  I've lived in debilitating CP almost 38 years now -- raised  3 sons, went through 2 divorces, many jobs, volunteer work, went back to college, moved a lot, founded a group for people in CP and was overwhelmed with the outpouring of NEED (this was in '82).  It was then that I came to know the power of Anger and that it could be used for something Positive; and, timing, and just knowing that the UNIVERSE is backing the whole thing.  I didn't have to push, prod, pull, beg or plead with anyone for resources.  Money came, publicity came, places for meetings, people wanted to come and speak at our twice monthly meetings (a substantial grant was given to me by a friend for getting other educational aides, e.g., audio tapes, books, video tapes, etc.)  I am very much a believer in Education and by that time -- really had passed it, but I knew that every patient HAD to educate themselves about what was happening within their own body.  (PAIN was not even in the Yellow Pages, nor were there Pain doctors cropping up all over the way they are  now.  Seems I'm always on the edge of whatever) 

I say these things wanting you to know how desperate I've been and for how long I have been there, that I've lost more and at my age now, I know I'll never get those childhood ideals of what my Life would be.  That is perhaps the hardest of all things to accept.  However, once you have gone through all as you describe, being alone isn't all that bad -- don't have to worry about apologizing because I need to rest -- at l:00 PM! (naps yet!!)  I have grandchildren, and believe me they have kept me afloat.  My life is small, lived in one room in a quiet Seniors Only complex.  (for awhile I had found a place out in the country and was just so happy with that, only the coyotes to say goodnight, no outdoor lights or sirens; but all things change)  I have tailored my life as best I can.  Family members now know (whether they understand or not, I no longer care) that I can't be around lots of people, don't go out much -- but then I don't have a car anymore so that kinda takes care of that!)  I live in a small town where there are some wonderful facilities for people like me (you see, even when the bad hammer fell and I had to leave my Lilac home, things turned in my life that made my living here make more sense; but then I'm a romantic and couldn't care less about making sense! lol) My family and other people I may talk to think I'm so resourceful, as I hate  to call on anyone for assistance--like my son!  I'd just rather go it alone than have to worry about their worry and know how tired they are of me and my sicknesses.  I know they wouldn't admit, even to themselves, but they will be glad when I am gone (and I don't say this maliciously -- just matter of fact, the way it is...and it doesn't bother me at all. The PAIN bothers the hell out of me!)  I am now 64 so learning to do the Tango, travel, join some Peace Corp type thing and go to Africa, continue to learn--specially languages, where I live there are many Hispanics and I know only a few words though I do try to  pick up a word/phrase now and then -- and you know they are so kind and don't look down on me as most Americans do them...like "they should learn to speak English!"  Well, would help a lot if everyone spoke the same language but in the mean time, life is going on).  I tend to stray from the topic.  That memory thing, you know?

  ACCEPTANCE IS THE KEY.  But it is obtained only by great suffering, fear, loneliness, despair, humiliation, depression and buckets of tears.  I took up Sky Diving (in the midst of my CP--I am determined!)--thought surely  I would die if I let go of that wing strut, but that was the only way and so I did.  Trying to remember a few technical bits of info before just letting myself be swept along, leaving my battered body far behind, I became one with the air, the light, the sky.  I had been used to my body, carrying it around, pay attention to all its needs -- but then, in a twinkling, it was all gone.  Whatever I was, was gone and I was only awareness, one with the air, the earth (rushing too fast towards me), the clouds.  I had never been so alive, nor have I since.  There were so many adventures I wanted to participate in.  Still do.  Yet, I manage to turn my mind  to another angle and I've learned to draw and have more interests in creativity, connectivity, what the Universe is made of and how we all came to be here.  And how we are so much more alike than we are not.  If I could do one thing, it would be to take that knowing and place it in the minds and hearts of everyone on the planet.  Because we all must share the benefits, resources and are so fortunate to be surrounded in Beauty -- and we must take care of Earth.  I've been trying to get down to a group of preservation centered people who look after a beautiful preserve here, Santa Margarita Preserve.  In Nature I am at peace.  I have a small camera and can become lost in the atmosphere there.  (now I had an unfortunate fall off a cliff there a few years ago and my son will no longer take me there -- but I'm going to find a way there and take my camera.  Already I ache to see the Ocean, walk on the beach.  But everyone is busy.  The proximity to the sea was one of the reasons I moved out here!  So, not all goes according to plan.  To that I can attest. 

I want to encourage you to allow yourself to find those places within you, reaches you didn't even know were there.  (I am a Believer in Dreams and their meanings.  They are, in fact, what lead me and it was one dream just some months  before I realized I could draw--usually reserved for the "left-brained" creatures of us all; while I am mostly all kinesthetic, alas -lol)  In 38 years you learn  a lot you never expected to.  I live a life that I feel fortunate to have.  It's all about YOU and your beliefs.  You cannot change another person for the sake of  your life!   This still takes work on my part, in letting go, accepting it as so.  But it is the only WAY to FREEDOM.  I had hoped to get my pilot's license (as my second husband had his); but that never came about either. I think that had to to with raising sons and a lot of  other stuff.  YOU have to prioritize your life.  No one else can do that for you.  Not the best of the Rehab Institutions (I greatly dislike the word "institution")  Only you know what makes you happy, what makes you feel ALIVE, what gives you peace and contentment.  We are here for love and happiness, to know joy and the treasure of giving without wanting anything in return.  All these answers lie within you.  I did take up Meditation many years ago, studied many religions of man; became a Buddhist, spent long period of time chanting.  All these things are like the spices you add to your favorite  recipe.  Just a little bit of this or that is all it takes  to create a meal for the Gods.  I am just throwing out one thing and then another I know.  There is so much inside of me that wants to put my arms around you and have you feel calm, centered and at peace.  But it is your Journey and I must accept  that.  Some days are like being flown about the Universe on a piece of silk; while others are spent in the mines of time, ceaselessly bent over, digging,  hammering with only a small bulb for sight and your lungs being eaten up.  We have to learn that our bodies must be thought of in terms of care, of prevention rather than waiting until there's a breakdown somewhere that must be attended to -- people take better care of their cars than they do their bodies!!!  (one of my big soapboxes!)

  I will stop now as my back is starting to yell.  That's one thing I learned too.  Whatever happened or was going on, I just kept a stiff upper lip, my shoulders back and marched on.  Well, that doesn't do your body good.  It wears it down too fast.  The point being that the only way it can get your attention is to cause PAIN, which it does, quickly, resolutely, loudly, compounding by the second.  Until you have no other recourse...only by that time, you may have waited too long and the part that just needed adjusting, now needs a knife...and long, treacherous hours of physical rehab.  Learn to LISTEN.  Your body is speaking and so are your emotions.  They are all connected and in the end cost  you more than you'd ever agree to pay, IF you knew the agreement you were signing.  NOW YOU KNOW.   Go With Life.  With Joy, like the weeping willow tree that bends to the earth, bend.  Don't be the stoic Oak (that was me and many others I think)   Who knows what wonderous things await us.  What unexpected tender evocations of an unexpected love, blooming late -- but  who and what says what is early and what is late.  Open yourself to LIFE, to LOVE, to Forgiveness.  Be carrassed by the spell that your body has missed for too long a time.  It is your life.  Your Time. Do with it as you feel is what is right for you.  It is to ourselves that we have to blame, no one else; and then you will realize that  blame has no part in this encounter with LIFE.  This game is ours to win or lose.  Purge all the old attitudes and rise to liquid flowing paradise.  Think of your favorite scent, favorite color, favorite sound, favorite touch -- close your eyes and you are there, anywhere and everywhere...a mystical fog rolling through your inside quiet.  Let your Self be lulled to this magical spell of devotion more and more; and soon it will take only the blink of your eyes, the drop of your mind and all its nonsense and you will find you are no longer of any known time.  You are a mist in a fog, rolling across the sea, shining as the LIGHT in the lighthouse catches you free...and so BE.

 

~freedomschild~

dockside
dockside
10/18/08 4:40pm

Dear freedomschild,

 

I have read your message to me twice on the screen.  There is so much wonderful strength and advice in your words that I have printed it.  I think I will try to read it once a day for a while until my belief in myself grows.

 

I can't imagine the frustrations you must go through with CP and pain and yet your happiness and hopefulness and determination to do what you can with what you have is amazingly inspiring.

 

I am sure it took a lot out of you to write such a long message to me, I thank you for that gift and I will try to use it.  I will write to you again after I digest more of your message. 

 

Take care and thank you,

Dockside Deb

Anonymous
Anonymous
11/21/08 2:43am

Hi,

 

Was it lower back surgeries that you had before? What is your pain level?

dockside
dockside
11/23/08 11:02am

Hi Gary,

Thanks for your interest.

 

The prior surgeries were several.  When I was 16 I had a radical approch to pynidalsinuscyst (common for truck drivers and people who sit a lot ...not active teenage girls).  My sacrum was open for months until skin could form.  The second surgery at age 17 (due to back pain) was on my L4/L5 area although it really was an exploratory as the docs thought they say a tumor.  In the end they removed some bone tissue that was degenerating (at age 17) and closed me up ......some docs think the current central pain & sciatica stems from these original surgeries (scar tissue and nerve damage).

 

I have also had several other surgeries which leave my core muscles in a bad state (partial hysterectomy, repair prolapse, removal of ovaries with exploratory, appendix) and 3 births.  Basically I have been cut from belly button right around to above waste level on my backside.Smile 

 

I have not had a spinal fusion.

 

I hope this information helps you.  Please feel free to write me anytime about your situation.  You can also click on my picture to send a private message.

Dockside

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By dockside— Last Modified: 12/17/10, First Published: 10/15/08