18 thoughts on “When Pain Defines You

  • July 3, 2013 at 6:05 pm

    Wow, I am blown away. me too. I stopped working 3 yrs ago and now on permanent disability, same boat. Time to make moves. Easier said than done.

  • July 3, 2013 at 6:34 pm

    I want to tell you I have been going through ALL of that for over 10 years. With the deaths of my Mom and sister thrown in. And I really really thought that I was, maybe not the only one, but would never meet anyone that felt it like me. I have Chronic Daily Headaches. That is the diagnose. It just means that my head NEVER stops hurting. And whoops there goes all my energy and hope for a ‘normal’ future. Just wanted to let you know I totally understand. And thank you so much ..you will NEVER know what your article has meant to me.

    • July 6, 2013 at 10:23 pm

      So that is what this is called. My head never stops hurting either. What kind of doctor gave you that diagnosis? How is it diagnosed? Acupuncture helps my headache some. If it can help me with a neurological condition (cerebral palsy) maybe it might help you.

      • July 6, 2013 at 11:04 pm

        Sorry Tracy. I was asking Laurie who has chronic daily headaches.

  • July 3, 2013 at 6:42 pm

    Start volunteering and join your church’s “prayer network.” or a “mission”. It helps to know pain is all over and hits many in different magnitudes and forms and that some manage to keep going forward regardless. And when you compare it with yours and your situation it gives you the strength to keep going ; and pray that God takes it away or lessen the burden … somehow.

    • July 11, 2013 at 7:11 am

      Hi, I’m enjoying this conversation. I was diagnosed with RSD, finally, after living in constant pain for 2 years. I worked and worked until the neurological side symptoms made my eyes “wonky” (I have depth perception issues, see double, and my sight flips around like an old filmstrip) and I get “spaghetti legs” where they just buckle out from under me. Even then I held myself up with the white board and tried to motor on.

      Finally, right in the middle of the day, I walked into my Director’s office and said I couldn’t do it anymore. My pain and the side effects were just too much. I knew when I did this that is would be my last day. RSD is progressive. There is no “cure”. My doctor wants me to go through ketamine treatment buy it is not covered under my insurance (its considered experimental) and its $35,000, just for the initial 10-day inpatient infusion and then there are boosters. And, there is no guarantee.
      So social security is in process.

      Marros, I know what you are saying. I am a woman of great faith. I pray often, for others, and for myself. But there are often times where forcing myself to feel grateful for what I have and not dwelling on what I don’t have just doesn’t work. In fact it often makes me feel worse because I get mad at myself because sometimes I’m just mad. I’ve lost a lot! My career as a teacher (which had defined me), my ability to play violin, my ability to cantor at church, my ability to have the freedom to drive. I have not lost everything but sometime, I feel, I need to mourn what I have lost.

      I just made the call yesterday to get help. Keeping a stiff upper lip just wasn’t working, in fact I think it made me worse. I’m having constant anxiety attacks, I’m depressed, and as most here know that makes the pain worse. Thank you for this conversation. I look forward to where it leads!

      • July 11, 2013 at 11:21 pm

        Just make sure you get a well trained pain psychologist. I finally found a good one by asking a psychologist in my neighborhood who a should see. It is totally different than seeing a therapist that doesn’t understand chronic pain. If you have to travel to a bigger city to see one, it is worth it. You should have homework every session if he/she uses a true cognitive behavioral (CB) approach. You should have some of the same exercises in David Burns book “Feeling Good: the new mood therapy”. These kinds of exercises have been more helpful to me than 4 years of therapy I had when I was a teenager with my first episode of depression. Apparently previous therapists that I thought were doing CB therapy were not.

        I’ve heard RSD is less common. I hope your medical doctor both have experience with RSD. Doctors who are experienced with my particular condition have been crucial in finally getting my physical pain to a tolerable level. And my injections are less painful too because my dr does more injections than my previous doctors.

        If anybody wants articles on how to find the right doctor or the right pain psychologist let me know.

  • July 3, 2013 at 6:46 pm

    I am my pain. I lost my significant other due to it…Im about to loose my house and my dignity. I cry all the time. I got taken by a scammer I was so vulnerable. Even the social worker I saw, after saying I had suicidal ideation and had a plan, wrote me a letter and said they don’t take my plan. Im so lost in this huge ocean called life.

    • July 3, 2013 at 10:46 pm

      Call your insurance and ask them for some referrals. You are in my prayers and thoughts. I am sooo sorry you are having to go through all of this. I too had a scammer hit on me.. made me feel really stupid. And I only know what you said but if you aren’t on anti depressants you might think about them for the time you need them at least.. thinking of you…

    • November 4, 2013 at 2:24 pm

      To All,
      I live with chronic daily pain also. I was dianosed with Lupus 8 yrs ago and the following yr diagnosed with Fibromyalgia too. I lost my identity. No longer work and feel like a failure on so many levels. Weekly therapy helps and I joined several support groups on Facebook. This has been a huge help for me. There are so many people going through what we are . They are loving, supportive and beautiful people. We all take care of each other.this is a lifelong battle, every little bit helps.

  • July 3, 2013 at 11:00 pm

    I read this post while breathing into a humidifier which is part of my morning and nightly routine to keep my vocal cords and larynx from causing me pain.

    Two years ago I developed chronic throat pain due to having asymetrical vocal cords. As a singer who had just begun a career change into music therapy, I was devastated and felt I deserved the poor timing of this condition. I lost my confidence and my sense of self. But I found other ways to express myself that songwriting/singing used to do, and I worked my ass off in my training (and still do) to prove that I can be a music therapist regardless of my vocal condition. Distracted by a busy schedule, I thought I had accepted this new way of living for me. I even felt as if I had gotten used to living with some form of pain everyday and had adapted to it. But what I realized just a couple of months ago is that I’ve actually been repressing a huge anger over my situation. I don’t notice this anger until I’m swept up in my “vocal hygeine” routine; breathing through vaporizors to keep the muscles in my throat loose, drinking over 100 ounces of water a day so my throat won’t dry out, dietary restrictions, and the countless types of head and neck massages I have to make time for. Mostly, the anger comes through on the days I think I’m feeling fine. The days I am in denial of having pain and think I am either “cured” or it was just in my head all along. So on these days I open my mouth, try to sing and am left with a painful strain that further damages my cords.

    So here I am, reading this post while working on my neck and I think because I’m reading someone else’s account of what living with pain is like and because I know I’m not alone, I have this hopeful thought in mind…pain reminds but it does not define. It creates awareness of one’s existence, helps us to take a pause and find the meaning of why we are in pain, and through suffering, creates an opportunity to make one stronger. It might mean I have to work a little harder, and slow down just a little more, but just because pain stays by my side does not mean it defines me. Instead, it helps to redefine me and make me become the person I always hoped to become.

  • July 4, 2013 at 12:58 pm

    I had extensive spinal surgery on my lower back seven years ago. It involved fusing my L3, L4 and L5 vertebras with titanium rods, screws and an artificial bone graft. However, my surgeon decided not to repair my partially herniated disc between L5 and S1. To fix it would have limited by range of motion too much.

    I applaud his decision, but I was left with a nagging, low level pain at all times. That is, unless I irritated the disc too much. Then, the pain rose to an irritating 4 on a scale of 10 for a few weeks until it gradually subsided.

    Even though my pain level was probably not as great as yours, I have found a solution: full body massages about once a month.

    As it turns out, knots form in the muscles in my upper back from sitting while I work. While the knots themselves don’t hurt, I compensate for them unconsciously by slightly changing the way I walk. That causes my lower back to twist more than normal between steps. The result is that my L5 and S1 vertebras put more pressure on the partially herniated disc between them, thereby producing inflammation and more pain.

    The monthly full body massages remove the knots, leaving me with no pain and only an extremely small amount of discomfort for the next week or two.

    Two “words” of caution: (1) Instead of the usual 60-minute massage, I need a full 90 minutes to get rid of all of my knots; (2) Try not to use a masseur or masseuse who specializes in sports massages (you could wind up with more pain than when you started).

    • July 7, 2013 at 1:11 am

      this worked for me when i had full med coverage from work 15yrs back. .. but today, with the progression? Not as much. I am fine for 1-3 days max.

  • July 6, 2013 at 9:24 pm

    Tracy I love this post. I’m a totally different person now too..irritable, angry, grumpy, depressed (yes I’m in therapy). and unemployed right now as I cannot work 40 hours either and I’m so exhausted (from depression) that I cannot manage part time yet either. And the job I had before (pain) I did not like. But at least it gave me something to do & I wasn’t crippled by depression. Fortunately I live close to a prestigious medical center & get awesome care there. So I have the pain tolerable now, finally, after 4 years of intolerable pain all over my body (Don’t ever get in a car accident if you have cerebral palsy-mine decided to permanently worsen when I got whiplash), only to find my head’s not screwed on straight. Sigh.

    I was a customer service rep. Plenty of people can take my place. But you, Tracy, you had a professional job. Won’t your former employer let you work for them 15 hours a week (or whatever you can handle)? Especially since you had just been promoted.

    For everybody out there, who is applying for social security disability, check out the website for medical professionals at http://www.ssa.gov/disability/professionals/bluebook/

    It tells you exactly what they look for to determine if you are disabled!

    I subscribe to different pain blogs, but I like reading yours the most. You hit the nail on the head.

    • July 7, 2013 at 3:29 pm

      Tracy, my therapist is having me do an exercise to change my negative thoughts. Maybe you could try it. This is what I have so far.

      It is hopeless (It will take years to recover from depression, like the first episode)

      Hopelessness is a symptom of depression, it doesn’t reflect reality.
      Nobody else thinks it is hopeless, only me.
      It is too early in treatment to conclude it’s hopeless.
      Therapy is more helpful now than it was then.

      I’m worthless
      There is a 1 in 3 chance a 20 year old worker will become disabled before retiring. That would be a lot of worthless people.
      I’m not in a coma, I can still think. I will find something to do that will help others.

  • July 7, 2013 at 6:22 pm

    Hello. Tracy, like you I started a web site, http://www.livinginpain.org, to share how Chronic Opioid Therapy (COT) can improve your quality of life. This is a free site and we encourage people to share health tips on how you control pain. Without COT I would be dead. But with COT I can preform daily activities and have some life. Good luck with managing your chronic pain.

  • March 22, 2014 at 8:24 am

    I have just found your blog and relate to do very many of your posts. At 150kg now and in constant pain from crps…I don’t want to look in the mirror. I don’t recognize myself with my almost razor cut short hair because I can’t use a blow dryer very well with no makeup because that means I need the use of my hands as well in pull over or pull up clothes with no real bra because yep you guessed it I can’t dress myself properly. I used to have a style even as am overweight person and I now no longer recognize myself. So much do that my niece and my sister in law walked right passed me today. They haven’t seen me for over 2 years. Anyways Thank you for this post I am getting a lot out of your posts.

  • April 10, 2014 at 12:01 pm

    I can relate to all of this! I cant work, applied for disability and hoping to get that. Chronic pain, as of this morning, has now affected EVERY area of my life…..I was told my pain is a huge “turn off” according to the person that supposedly loves me. As if I didn’t feel crappy enough already…………………….


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