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How do all of you cope?

snookiessnookie Posts: 359
edited 06/11/2012 - 8:22 AM in Depression and Coping
Most of you have been dealing with ths so long (it's only been 4 months for me). How do you keep going everyday?

My boys, 9&10, keep me going everday, but barely. I keep getting out of bed for them, but don't know how much longer I can do this.

So please, tell me, how do you all do it?
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Comments

  • With pain you learn to adapt to life....and my meds do help me with the pain.....
  • It's difficult to answer your question since I began dealing with chronic headaches and shooting pain before I injured my lower back and discovered acute and severe pain.

    I guess I could say that I became very angry and channeled that anger into motivation, which motivated many doctors which in turn helped keep my motivation going.

    Eventually I discovered that pain just didn't mean the same thing for me anymore and it all became a matter of trying to live my life instead of focusing on the pain. When the pain forces the focus back on itself then I have to deal with it, however somewhere in all of that I am still fighting to regain what I can and stay motivated to push forward.

    Yes there are things like physical therapy, acupuncture, drugs, nerve blocks, ablations and surgery that I have gone through, but each of those come without the promise of complete relief, each of those are a "maybe". So I have to stay prepared to live with it and section it off.

    Today I have a spinal cord stimulator which is a wonderful device. It comes with a price though. 24/7/365 I am reminded by the feeling of the device running, that I live in horrible pain. Should the device fail or be turned off, my life will once again become a struggle.

    I'm sorry, I wish I had an easy answer for you. I guess the key is to not give in to the pain. Respesct it. Listen to it. Let it motivate you to seek out the help that you need.

    Best wishes,

    "C"

  • Hello my fellow Spineys,

    I am 3.5 mos. post-op. I had an ACDF & Plating (C5 - C7) in May. I am TIRED and frustrated due to the excruciating pain, numbness, weakness, and tingling that has returned to my left arm down to my fingertips. I am a pianist, and have been unable to practice or perform since Dec. 2007. Playing the piano is my "therapy." These are the SAME symptoms I had pre-op. Not to mention the constant pain in my neck, shoulders, and back (headaches too). I had P.T. before my surgery! This added no value, but my NS believes it is essential to my recovery. Therefore, I am currently back in P.T. and wonder if I'm wasting my time? On this past Monday (Aug. 7th), I had a Myelogram and will know the results on this Weds., (Aug. 13th) when I see my NS. On the 11th (Monday), I am scheduled for Accupuncture (which was suggested by my Pain Specialist). Heck, I already feel like a pin cushion (like many of you...). But, I'll try just about anything to feel better! Sleeping soundly through an entire night. I've forgotten what that feels like. There is no comfortable and pain free position. When I ride in a car, this makes my pain worse (anyone else experiencing this?). My quality of life sucks big time! Hell, pain will wear the best of us down. I have a pretty high tolerance for pain. However, I have been suffering since Dec. 2007, when I was rear-ended while sitting at an intersection waiting for the traffic signal to turn green. The person who hit me, never saw me (need I say more?). I'm not a complainer. In fact, usually, I'm always positive and encouraging others to stay strong. But, I am TIRED of suffering (now hold on...I'm not having suicidal thoughts). I just cannot imagine living the rest of my life like this (taking pain meds, P.T. and endless tests and Drs. appts.). I know there is a light at the end of this painful tunnel, I just want to see it ASAP :-). Now that I have vented, I would welcome any thoughts, suggestions, and words of encouragement. I love this site because I know I'm not alone. In other words, I have a great support system (family and friends). However, NO ONE can understand how we Spineys feel unless they have been and/or are going through this nightmare.

    Thanks in advance for your support :-).
  • pianogirl19,you seem to be doing all the right things medically. now you need to get your head in the right direction and that is one of acceptance. until you do that you will be on a constant merry go round. if your condition is there you ae going to have pain for as long as that is. and it will have to be treated daily. the only light i see at the end of the tunnel is maybe one day all pain even ours will be fixed. =D> until then you need to get hold of what is making up your life now! good luck and i hope you have many bright days. Jenny :)
  • You sound like you have really been thru the ringer! I know it's hard to have to stop doing something you love. I had a counselor tell me "Life changes." That sure doesn't make it any easier! And, I'm sure it's frustrating to go thru surgery, PT, etc. and not see results yet. Hopefully, your efforts will pay off soon, and you will begin to heal. Hang in there! And, good luck (we all need some!)---Mazy
  • Each of of us cope with pain in different ways. I think that it starts with having positive affirmations and grows from there. Visualize what you need to accomplish in baby steps, can't expect to much at once. LOL

    Remember to let yourselves go through a grieving process, whatever it takes. Don't hold in those emotions, come here, VENT and SHARE the good and the not so good days.

    snookie, enjoy your kids and the bright eyed innocence they share with you.

    piangirl9, maybe you can't practice right now but can you find another way to express the music within you?

    O-

    Take care of you and don't be stubborn, ask for help. Answers are out there, just hard to find and will come around when you least expect it. Don't give up, we're here for you.
  • Good points Oriah, the aim is not to let these elements build up and however long you have been in pain your experience of coping and dealing with it does get better as you learn to find you limitations and be realistic if not upset by our new goal settings and attainments, what option do we have.

    You can live a more restricted life than necessary and sway from great pain to manic activity, the optimum is somewhere in between where ever that is for you as an individual and you have to find the threshold of activity without increasing pain and survival within those limitations.

    I have addressed all my issues simultaneously in the hope of overall improvement and that is tiresome, we are all allowed to become frustrated living this life and give yourself time and acknowledge your success however small with now more significance.

    Take care and be kind to yourself.

    John =D>
  • for all the replies. I'm really stuggling right now. Boyfriend of 2 years left cause he couldn't deal (I know better off without him but it still hurts). Between working full (WCB won't let me take any time off work), my kids, and fighting with the Doc I'm just getting frustrated. I am hoping that I can see a PM, there is only 1 in my city of 60 000 people so the waiting list is pretty long.
  • Yes it does make sense. My boys are what keep me going everyday. Looks like I have to get better at this coping thing cause PT gave up on my 1 1/2 months ago and today the Dr gave a 3 month RX and told me to come back when I get low. He said I have unidentified chronic pain, and I better get used to it.
  • I think that your body continually builds up a pain resistance so we can take much more pain then the normal person. When things get really bad we just do the things we HAVE to do.
    We push ourselves til we cant push any more...this an try to keep a positive attittude.


    Christina :)
  • Ive been suffering for 8 months now and live on my own with my daughter, Great friends and not overdoing it works for me, problem is Im so stubborn and dont like asking for help which luckily my friends and daughter have realised.

    Good luck, there is a light at the end of the tunnel and people on here are great with their advice and support. PM me if you need to xx
  • My husband became disabled 10 years ago from a medical negligience case of back surgery and ended up with front brain damage, stool that got in his incision from the narcan and that just did so much damage to his spine and they had to debride it and then 18 months later they found it in the bone so another surgery, then a spinal chord stimulator and that didn't do it so another surgery for a morphine pump and now he is on dilaudid which is manmade heroin and another drug in his pump and he takes 30 pills a day for pain, depression, and all the health problems that this has all caused..he is now bipolar and has post traumatic stress from ICU when he almost died...so everytime he goes to the hospital it is a nightmare for him as he thinks they are trying to kill him...then two years ago I finally had to have a fusion at the same level L5 S1 as I fell on ice 8 years ago...now I just found out last week that my neck now has two herniated disks as I had whiplash all these years and my low back has two more bulging disks, bursitis in both my hips as my spine is unstable and now seeing an orthopdic on Monday morning ..I have been in physical therapy almost 3 years as it just seems like every part of me is going...but I can only say by the Grace of God I have made it through all of this..and it is one day at a time...my husbands spine is deterioting and he has had several more surgeries and is facing more..it is so hard to see him suffer so I cannot show my pain but I do go to counseling and it does help...I have been in a support group for many years and that was one of the best things I did...depression is also something that goes along with chronic pain...I just posted a neat story about Tony Snow on my blog that my mom sent me..Why Me? here is my site...hugs, cheryl I am here if you need to talk...my daughters were 7, 9 and 12 when my husband became disabled and he has not driven due to the front brain damage so it is not easy and many days I wonder how much more but I know I cannot go past this day that I have now to enjoy...Have a Great Weekend with your boys...they are only young once and remember that...cheryl
    http://signsoftimensuch.blogspot.com/
    http://www.flickr.com/photos/thegoinggreenboutique/
  • Hello

    How do we all cope? When I first hurt my back I was 31 and out of work 2 1/2 yrs. I am 61 now.
    Yes 30 years of pain- rarely a day without some twinge or pain.

    What kept me going 30 years ago was my daughter who was 10 at the time.I was sole support as a divorced working teacher.

    There was no surgery or fixes then. The Orthopedic Surgeon then gave me 2 intrathecals (they do not do those anymore) and reduced pain 60%. I worked in 40% pain until 13 yrs later: 1993 - a miracle- nerve blocks. every 3-9 months.

    Then after all these years in 2007, they did not work and at age 60 I had to have back surgery.

    Well that worked for 6 months.

    Now, I am in Pain Managment and I guess what I am saying is I refuse to give up. If these blocks do not work, I am seeking a second opinion and maybe nerve ablation.

    At least they have meds and these things to help us today.
    And we have this site- Bless all who contribute.

    I figure if I can get up every day; help my daughter- I am retired as of age 49 due to a disease called PIDD- means you get pnemunonia etc (I am on IVIG for that). It is a good day.

    I had to give up babysitting the 2 1/2 yr old grandchild, I miss her dearly. But I have my six yr old grandchild with me daily in the summer. Takes your mind off the pain. Sometimes, I can not do that- and he goes to work with his MOm.

    That is another thing you do- let go of the things you can not do and enjoy those you can do.Leanr to say NO.

    Rest when your body tells you; let other people help. Keep Life Simple.
    Easy housework- easy cooking- easy everything and do not worry wbout what you miss in life.
    Concentrate on what you have.

    Betty RI Sharpie 60

    PLIF Oct 07
    with rods and screws and donated bone graft
    6 glorious pain free months
    fused (Neuro says)
    "Back settled " April 08 pain started again: GROIN PIRAFOMIS are the worst (Have no idea what that settling means )
    PM started 6-21--08
  • I concur with Haglandc on the way to deal. but i just learned to fight by not fighting the inevitable, i just let go,and put my energys into what i can do
    luck to ya!
  • The same thing happened to me - rear-ended at a red light and I feel similar things to what you are feeling. I have gained so much compassion and empathy for people with chronic pain. I feel like I am also depressed because my family can't understand as much as they want to. It seems like everyone goes on with their life while yours as you knew it just stops. I have 2 young children and I need to be there for them. I know it was an "accident" but it makes me very angry that someone has done this to me and my family. At least here on this site you realize that you are not alone!
  • Once again, I want to thank all of you for your responses. It looks like I will be putting them in to practise for a long time. Dr sent me away on Friday, no more treatment, just an RX to last 3 months. His parting words were that I don't need to come and see him anymore unless I'm low on meds.

    I'm still trying to come to terms with that, I didn't expect him to give up so soon.
  • Can you get a second opinion? I can imagine how upsetting that must have been to hear!
  • I am in Alberta Canada, and we have a major shortage of Dr's. There's something like an 11 month waiting list to get a family Dr. I also can't just phone an Ortho or NS cause here I need a refferal to see a specialist. It's so frustrating. I don't know what else to do, other than learn to deal with it (which I'm struggling with mentally and physically).
  • I've read everyone elses responses and I agree you just have to deal with it 24/7/365 days of the year!!! Pain meds, and everything else hasn't helped me yet but I'm waiting on GOD'S Healing hands. I go to Dr's and Hospitals but they don't help with the pain I have inside of me. Some folks that don't face what we go through don't understand why we always talk about being in pain all the time until one day it happens to them then they will remember what they said to someone a week ago about being in pain.

    I work in a place that demands heavy work load! I get screamed at because I'm not carrying my work load like I should but they don't know that I'm under Light Duty that means I can't lift 10lbs or more. I hear it all the time, "why don't she quit and work somewhere else and find someone else who will work." My boss puts me through Hell nags at me all the time, talks behind my back when he knows I can hear.

    I get up every morning and wish I was dead but I find that hard to believe that folks out their will miss treat you and they don't care, they don't have a heart! I try not to complain but when the pain is at its worst then I got too, just sometimesI go to the restroom and cry my eyes out then go back to work because I have bills to pay and I love getting nice things for my self and my baby doxie.

    I do ajust to my pain I don't get use to it though!!!!
    I don't take 20 pills for meds but I do take a lot of pills.
    Just lean on GODS help and the doctors to help deal with your pain and if the doctors aren't doing their job find another one like me!
  • On the subject of coping - well, sometimes I don't! But we all have our moments of weakness, and I very occasionally allow myself to fall apart (alone).

    Then I try to keep my head up and count my blessings as I am so blessed in other areas of my life. And I, too, have gained so much compassion and empathy for people with chronic pain (like my own mother, whom I used to get so frustrated with, and now she is the one who understands best what I am experiencing). Life has some interesting twists, doesn't it?

    DoxieCity04 - your story of your workplace breaks my heart, I'd like to show up there and kick your manager's you-know-what, except I'd probably herniate another disc. Your precious pooch is glad you get up every day, and I do hope you can find yourself in a better situation soon (work-wise or health-wise or both!)

    -Melissa
  • Melissa,

    When it comes to falling apart, I look at it as a chalk board. If we continue to write on a chalk board every day, eventually we have to erase it and start over. The "falling apart" is what we do to erase the board and start fresh. Anyone who has used a chalk board knows that you never really get it perfectly clean, but you can get it good enough to press on with another day.

    "C"
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