Survivor Stories


Empathy is underrated. Hearing from people who live in pain or live with those in pain, has helped immensely. It has lessened the feeling of isolation and depression. I know I am not alone and people out there are in the same boat.

Being offered off the cuff advice like “just go for a walk”, can drive you to distraction. However,  different treatments, excercise or coping mechanism that have worked for some are worth hearing about. You never know what is going to work.

Here are some ideas for your post – it can be anonymous too…

  • experiences with doctors
  • treatments you have received
  • your story
  • helpful resources
  • websites
  • positive outcomes & success stories
  • coping mechanisms
  • humourous anecdotes
  • any other content that you feel might be helpful, relevant or useful.

Thank you for sharing your story. If you are just reading, I hope they are helpful.

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8 thoughts on “Survivor Stories

  1. In my case, there was no traumatic event (such as yours) that triggered my facial pain. I was just standing in line in the grocery store in 1998, when I felt the first twinges of pain in my left cheek. Things went downhill from there: the pain increased and became constant; then my teeth started to hurt as if decayed or abscessed. I have chronic atypical facial pain and atypical ondontalgia so I don’t fit into any neat categories.

    There is a cyberworld of people dealing with various kinds of chronic pain: some like yourself trying to cope with pain while being part of a family.

    Thanks for starting your blog; blogging has brought me into contact with people I never would have met otherwise!

    Keep on blogging!

    1. Just saw your blog entry about your chronic pain. Sounds like you have a remarkably similar pain history to myself. It would be great to compare experiences of living with atypical ondontalgia?? My email address is ashaw@cfbt.org. I am a 38 year old male teacher living in Brunei with my wife and 2 children. Would be great to make contact.

      All the best

      Asa

  2. I thought I would go ahead and put my story here, even though I kind of told about it on another one of your entries. I was diagnosed with Fibromyalgia in 1997. Degenerative Disk Disease in 1999. Endometriosis and cervical dysplasia in 2001. So, with that came some limitations and problems, but nothing compared to what happened to me in 2005.

    I went in for an outpatient ovary removal (already had uterus/cervix removed a few months earlier). During the removal the doctor poked a 5mm hole thru my small intestine but didn’t notice it, sewed me up and went on vacation to Disneyland. I went to ICU, ended up septic, in a coma and on a ventilator. I had over 16 abdominal operations, lost part of my bowel, had ostomies, I was in the hosptial for most of a year, I had necrotizing faciitis (flesh eating disease), pneumonia, MRSA, C diff, and blood clots…and many blood transfusions. My family was told to get my affairs in order more than once.

    But I survived. The pain did too. I have severe nerve pain allover my abdomen due to neuromas and nerve damage. I have a ventral hernia from my breastbone to my pubic bone that cannot be repaired, I have no abdominal muscle wall left, I must wear binders to try to hold my abdomen in, my abdomen is full of adhesions which have all my organs basically cemented together, coughing, lauging and sneezing bring me to tears, I can’t lift push or pull. I can’t eat red meat, raw veggies or fruits, no high fiber, no nuts or seeds, no beans…nothing hard to digest or gas producing. I am on morphine and neurontin for pain, go to a pain clinic every month. I take xanax due to PTSD from the experience.

    My life has been forever altered by this experience, and I am hoping to find a way to make it have a purpose. Looking for a way to help others thru similar problems. I’m thankful for the internet because I have found so many friends thru the blogs and social networks who are also suffering and surviving! They have inspired me and kept me going when I felt lke giving up and I hope maybe my blogs and entries have the same effect on others.

    Thanks for letting me share on your blog…perhaps more than once…lol. My Fibro Fog gets worse when the weather gets cold! 😉
    Tammy
    http://spicyt.wordpress.com

  3. I’m Michelle, 32, mom of 2 boys, RN and army wife. Now that I think about it I’ve had Fibro as long as I can remember. In fact, I remember discussing the disease with a friend 15 years ago and how I fit the profile for it. Until now I have managed it myself with Ibuprophen, heat, rest massage, and the occaisional muscle relaxer.

    The pain really got bad in October of last year. I went for about 3 massages in a 2 month period. In January we arrived “on island” in Hawaii. I went to the Urgent Care Center once or twice for the pain it still it was managed with Flexeril.

    In September of this year I had pain that I couldn’t manage. I had to ask for help. So I went to the doctor and the run around began. My doctor said he thought it was muscle strain and sent me to PT. Once I began PT I was too “hot” to even undergo the massage therapy they provide there. But I let them do it anyway because I needed it to be worked out so I could feel better. But then the pain changed from aching to burning. My doctor did an MRI on my Neck and found nothing. So he just sent me back to PT and still I was not getting better. So I finally asked for a second opinion and when I went I had my husband mark with a sharpie all the tender spots on my back. When the DO saw this is sent me to Rheumatology and then to Neuro.

    The army Rheumatologist diagnosed me with 4 questions. Then the Neurologist also agreed when he poked at me in all the tender spots. I was devestated. It felt good to hear that it’s not all in my head, but the finality of diagnosis was crushing. Because I’m an RN and I know what this disease can do to people. That was only about 3 weeks ago. I have started on Lyrica and it helps but it still hurts every hour of every day. My doctor just brushes it off and says there is nothing more he can do. So I’m grappling to find solutions that may help relieve the pain. You can find more at http://aristigal.wordpress.com
    Michelle

    1. Hi Michelle,
      ‘Thank you for all your comments. As you can see, the last round of shots, knocked me on my ass. I was in bed, so exhausted, like I have never, ever…I mean EVER been. I couldn’t do anything….so I apologize for the delay in posting and responding to your comments.

      I have to say that it is a relief to get a diagnosis, for several reasons, I know this. However, as an RN you know the body works with it’s whole self….not just the injured part. Therefore, our pain changes, moves, for several reasons. Secondary and tertiary symptoms start and then you are presenting differently than what you originally went in with. Nerve pain is the hardest as they will reroute and then Dr.s are stymied as to what is wrong with you and on top of that they cannot be seen on any tests.

      Maybe try to work with a Naturopath….along with, of course, your regular specialists. I found that maintaining my overall health has been crucial to my recovery. Although, you may be sick of advice (I know I was), but hey, you never know what is going to work.

      Thank you for your comments and I like your Blog too.

      Thanks, K

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