What she said!

Double what she said.

Thank you for expressing succinctly the way I  and many others feel. This kind of letter needs to be spread so ordinary folk can understand. Thanks again. Cheers Mary.

Thanks for writing down most of my own thoughts and feelings. I´m passing it over to a few of my friends.

Double thumbs up for putting chronic pain as it is.  Mine has reached a point after having chronic pain so long that I am now confined to a bed.  Oh, I make the dr. appts. when I can, as you eloquently stated it, no one, 99% of those family & friends in my life don't see the tears, almost daily from the burning nerves moving into more areas, the stabbing knife pains in my legs, the screams of "please help me"! & the 100 lb. weight lost in 11 mths. only, even tho. I've been totally bedridden, no exercise because who in the few hrs. of controllable pain desire to exercise.  The more I move even to the restroom my pain burns more in my feet and bottom.  No opiods can control this type nerve damage I've been told by several pain specialists.  Yet, having Transverse Myelitis is like MS, yet I've NEVER been prescribed a MS drug.  Montel Williams on Dr. Oz said he uses marijuana every day to control his MS & he is fortunate to live in a state allowing him a drug, which unfortunately has not been approved in all states.  If this helps my TM, then I should be able to have it in my state for people existing like me.  Only existing, not truly living.  Marijuana should be made available in all states for people who live existing, not having a life, not being able to even go to a store for the pain & what the aftermath would cause me.  It's enough just to make it to drs. when possible.  I wonder how many of us are living with looking at having a port put into us because too many nurses have jabbed you and blown a vein that never returned.  Complex patient I'm often titled; the medical system has made me this way; never catching my TM soon enough, therefore no reversal; 3 yrs. later diagnosed w/ scoliosis; 10 1/2 surgery damaged a nerve running from my back into my bottom, ended up on a ventilator, kidneys failed, 2 superbugs got into a reconstruction of my urostomy because my urostomy was not taken care of on the scol. surgery causing  2 liters of fluid & pus to be removed on the 2nd surgery 3 weeks later & an abcess found, plus emergency colon surgery then.  My pain is so far from being controlled it's unreal.  I am not one to get angry easy, but I wish I had NEVER had one surgery.  I wish I had researched, not become the complex patient drs. have made me in my small state.  It would be wonderful for even our 29 yr. old daughter to even show one time she cares; everyone but my husband & very few friends are truly understanding as best as possible. 

Hi,

My name is Chris and I also suffer from chronic pain. Unfortunately, my neuro-pathic pain has really increased as of late. The saddest part about nerve pain for me, is that it can really sap the fun out of just about anything. Whether it's something you love and are passionate about (for me it would be going to a baseball game, watching a supercross race, going to the park with my wife and baby, etc), the burning, stabbing pain will instantly ruin what should be a great time.
I was lucky enough to have a baby boy one week after I was released from the hospital (I was partially paralyzed in a dirt bike accident). At that time I thought having a baby would make things too difficult. However, I have discovered that having my son really saved my life, I now have someone that I could never "check out" on (even while experiencing unimaginable pain). The sad part is I feel like my pain is taking away from me being a good husband, parent, friend, and son). I can be watching my son and having a blast, and then in an instance,I have to hand him off to my wife, so I can go curl up in bed.
I consider myself a fighter and no matter how bad my pain gets, I'm going to continue to fight it.  A lot of people would quit this fight, and let the pain win, but I'm not going to be one of those people. I'm going to continue my fight (with as few pain meds as possible), because I know one day my pain will stop (either naturally, or with medical help). And when that day comes I will be extremely thankful for every hour, minute, and second that passes where I don't feel pain.
Before I was injured I let a lot of days pass without being thankful for my health. And until your health is taken from you, you really will never appreciate how good you have it. I've made a promise to myself to never take being healthy for granted again, once I get it back.
Sorry for the long post, but it's kind of therapeutic to vent like this to people who understand.

Thanks for listening.

Chris

This is profound. i don't think the public or caregivers or Doctors generally understand this.

Beautifully  written.  Thank you.

Natalie,                                                              You are no longer a "complex patient".  I hereby confer upon you the title so few of us special ones share.  From this day forward you shall be known as "Natalie, Princess of Enigma". Never forget, doctors go to special schools and you've paid them lots of money to figure out that mysterious shell that holds your soul. Expect great things from them, Dear Princess. 
Deborah, Queen of Enigma

Chris, You keep fighting.  Your son will grow up believing that the way HIS Daddy lives IS the norm for every daddy, and he won't feel he's missing anything.  You will be able to give him special moments, time that happens as a result of his quietly sitting with you in bed or on the couch where you just cuddle, you read to him or share a video.  He'll feel his life with you is normal, because for your family it is!  There was a t.v. series back in the 2000s where the main character had a heart attack.  It was in the same week I'd had a small stroke.  The character's friend responded to her frustration with trying to do things that had been so simple by saying, "Your normal has changed."  I've kept a note with that written on my desk for the last ten years. Your normal, your son's normal, our normal changed years ago, and includes chronic pain.  Enjoy the days you can get out and take him to games, throw a ball with him; and the days when you have to take more meds and curl up in bed savor the sounds of him playing in the other room, the voices coming from other parts of the house, invite him in to smooze for awhile.  He'll learn empathy, caring, kindness and that the world doesn't revolve around him.  He'll understand that in your family you all work to take care of each other, and he'll be tuned into other's needs.  And he'll grow up to care about people like you, Annette, and the others who have made comments here.  It seems to me that's a pretty special way to raise a kid, so you and your wife keep going Chris, you'll have a good future ahead.

How about also throwing to tell people to not tell us, "to stop talking about it."  I talk about my pain because of the very reason's that were written about.  Just because I go to work, or mow the lawn, or hell even play golf, doesn't mean I am not in pain.  I do those things to feel some sense of normal.  Do they cause me great deal of pain, absolutely.  So when I get "but you look fine."  It makes me want to literally scream and sometimes even cry.  I have lived with pain since September 11th, 1984.  27 years of my life I have dealt with pain resulting from a spinal cord injury I sustained playing football.  Yes I have had a great physical recovery, but the flip side is, I feel all of my pain.  I feel the nerve pain, the muscles starins from all of the weakened muscles, I feel the fatigue that is already building in my fingers and hands just from typing this paragrapgh.  It's 7:23am on 4/22/11 and my hands are already aching because I am choosing to type.  Sure I could not type, but then I would not be able to respond.  yes I know about voice activation software, but it makes so many mistakes, I end up having to type to correct them.
I am getting a divorce because my soon to be ex-wife doesn't like the fact that I need to rest often.  She doesn't want to sit at home as often as I need to to not be so tired and in pain.  Sure there are other problems, but after having someone time and time again belittle what you go through, you start to not to like that person.  I don't like her, and I don't ever want to feel the way I have felt for the past several years again.  I would rather be alone than have someone tell me. "that's you talk about."  Why don't you work out more? 
Chronic Pain is hard enough!

Joe, you've made the right decision to move forward with your life.  Knowing you'd rather live alone than be emotionally degraded by the person who should most care and respect you is a strong indication that it's time for a drastic change.  You should seriously consider joining a support group (or seeing an individual counselor) that deals with chronic illness or divorce so you can talk to others experiencing the same issues.  I think you'll find many people who have had pain as you have are much more tolerant and empathetic.  Sometimes people really can't fathom how difficult getting through a day is for those of us in the Chronic Pain Club, and with only a few exceptions, I wouldn't want them to!  You'll find as I have, I believe some truly amazing people and have a few very special friends that you wouldn't, had it not been for the medical issues and chronic pain that is a part of your daily life.

On the day your divorce is final you should find the song "I Hope You Dance" and listen to it. Make sure you hear and understand the words -  
Deborah