Friday, April 17, 2009

I hurt today

I'm in a lot of pain today. Why start with that? Because it's what I say every day. I have a degenerative nerve disorder that causes intense, unremitting pain. I've had it for 16 years, and have started every day with the same "I hurt today." I've tried a lot, I've seen a lot, I've learned a lot. My hope, with this blog, is that perhaps I can touch someone else who has been in a similar place on this journey, and help them get through a difficult spot. Perhaps some of you can help me as well. I think each of us who suffer chronic pain feels alone. Most of the people who we deal with on a daily basis really can't understand what it's like to hurt all the time. Our family and friends love us dearly, but honestly, they can't understand the fear, the frustration, the crisis of faith, and all of the other demoralizing things that go with chronic pain. Not that they don't want to understand, and want desperately to take the pain away, but they can't take away the pain, and they don't know where to go from there. Sometimes we don't even know what it is that we need. But, we, as a group, understand it best, and perhaps can help each other. We've all learned tricks to cope with the pain, ways to deal with the system, programs out there to help us; I think we can share these ideas with each other. So, let me start at the beginning and tell you my story.

I went on the best ski trip of my life during Christmas of 1991. I skied Christmas day at Purgatory in Durango, Colorado. There was about 2 feet of fresh powder, and not another soul on the slopes. My brother-in-law and I were in heaven - it was wonderful.

Shortly after this, I noticed a lump on the back of my left knee. I went to my Primary Care Physician who said that it was a Baker's cyst, and he sent me to a surgeon from my HMO list. I would learn later that you should never operate on a Baker's cyst. When they are inflamed and causing pain, you get a steroidal anti-inflammatory injection, and just manage the flare-ups. Well, I was young, I didn't know, and I trusted the man with the professional-looking white jacket and lots of degrees and certificates on his wall. Of course, in hindsight, I know that I should have done some research, both on Baker's cysts, and on the doctors on my HMO list, but it didn't even occur to me at the time. Reminds me of the old joke: What do you call the guy who finishes last in his class at med school? Answer: Doctor. And I had an appointment with him.

The surgeon made a real mess. I don't know if he was just incompetent or if perhaps he was on something, but he really did a number on my knee. He cut through the joint and leaked the fluids, he cut the hamstring tendon, then put it back in the wrong place, he cut out half of the hamstring muscle, and, to beat all, he did not remove the cyst - he popped it and left pieces of it up and down the length of the hamstring tendon. Anyway, it took 3 operations to fix what he did, the second of which caused a degenerative nerve disorder called Reflex Sympathetic Dystrophy (RSD), also called Complex Regional Pain Syndrome (CRPS), long names for a really painful disorder. The nerves in my leg responded to the injury by sending out pain, swelling, and other signals, and those signals never turned off. Essentially, my body still thinks there is a terrible injury on my leg, so it continues to send pain signals. Since I have had the disorder so long, it has progressed, and is now what's called systemic. It means that the signals are no longer just in the peripheral nerves, it has gone to my central nervous system: the spine and brain. There is no cure for RSD, and there really is not an affective treatment. It's all a matter of trying to treat the symptoms: manage the swelling and the pain. But there really are no good medications for nerve pain, so I continue to be in excruciating, burning-type pain even when I am sleepy and groggy from so much pain medication.

Of course, the first question when people hear my story is "did you sue?" Sadly, I picked my lawyer from the same list as my surgeon, and he was either incompetant or "on the take with the doctor," because he filed my papers 1 day past the statute of limitations, and I was out of luck again. My fear has always been that the doctor was free to do this to someone else, and I live the rest of my life in horrendous pain. He doesn't even know what he's done to me.

But I'm not doing this blog for it to become a place of pity. I certainly have my bad days when I want someone to agree with me that this sucks and it's totally unfair; when I want a loved one to hold me when I cry; when I want someone to say "poor baby"; but I have many, many more times when I move forward in my life and do all of the things that I can do, and don't dwell on the things that I can no longer do.

I am going to try to post every day, but as anyone with chronic pain knows, we have our bad days, so there will be skipped days. Some potential topics are
  • The system - how it demoralizes and stigmatizes, and doesn't even offer much help
  • What it must be like for our loved ones to watch us hurt and not be able to help
  • Tips for dealing with the pain
  • Tips for dealing with the system - what assistance there is, Social Security Disability, etc.
  • The importance of having hobbies - find things you enjoy doing, and do them
  • Focus on moving forward, not on looking back at all that you lost, and all that you'll never be able to do
  • Wheelchairs, walkers, and other assistive devices that we hate but need. I'll discuss my own love/hate relationship with my walker and my wheelchair.
  • How to deal with stares and questions from people in public
  • How we see ourselves vs. how others see us in terms of wheelchairs, scars, differences
  • Finding new ways to do things - you can't reach the top 2 shelves in the supermarket from a wheelchair
  • "When life hands you lemons, make lemonade" and other unhelpful and really rather silly things people say when they don't know what else to say
  • The challenges inherent in being disabled
  • You can't quantify pain. Your pain isn't better or worse than mine - it's yours and it's real.
  • Predicting the weather, and how weather changes affect us
  • The importance of having something to care for - for me it's having a pet.
  • and much, much more
I'm hoping other people living with pain, or living with a loved one in pain, will write with other topics to discuss. I'm not a doctor, I have no expertise in any area, but I've been there. I dug myself a really deep dark pit of depression, and spent about 3 years at the bottom of it, unable to even see the top. Every time I thought I saw a light at the end of the tunnel, it turned out to be a train, and back I'd go to the bottom of my pit. It took me a long time to claw my way back out, and I learned a lot in the process. I learned that I can keep crying about all that I lost, and all the things I'll never be able to do, or I can look forward, find new things that I can do, and enjoy life a heck of a lot more. I've learned that I can feel sorry for myself about all of the hobbies that I loved so much that I can never do again (like skiing - I really miss skiing), or I can find new hobbies that I really enjoy. I can never go out of the house because it hurts and I hate the way I look in a wheelchair, or I can go out and have some fun anyway. Yes, I'll be in a lot of pain later, but I will hurt later no matter what I do. I can lay in bed all day and I'll still be in mind-blowing pain, so why lay in bed all day? I can feel funny when kids (and adults) point and stare at my wheelchair or my big ugly scar, or I can answer their questions openly and honestly, and maybe next time they see someone who looks different, it won't startle them so much. I can sit at home and fight my way through the pain and the system, "reinventing the wheel" every time a new challenge comes up, or I can start this discussion and hope that others join in and we can help each other. I can feel alone, or I can reach out, realizing that we all have our stories and our pain. If we voice them and share them, perhaps they aren't as painful. We'll see.


  1. I think this is a wonderful start to what should be a great blog. Keep at it, and I think you'll find you're helping both yourself and others. Good first post.

  2. I'm Judy's mom and I am amazed at how eloquent my daughter is. Okay, I always knew she was fabulous, dealing with everything she has to deal with, but now I know she's a great writer too.
    What she says about the frustration of someone who loves another and is unable to help is enormous. I want to fix it. That's what mommies do. And I have finally (it took about five years) realized that I can't take away the pain or really lessen it.
    I can just be here, with a poor baby or a wooza wooza, but not with fixes. And maybe that's the best any of us can do.
    I can suggest things that might help, but a shoulder now and again can be just as valuable.
    I'm an EMT and take lots of ambulance calls. I realize that one of the most important things I can do for a patient who's probably having one of the worst days in a long time, is offer psychological first aid. And that's one of the best things you can do for a loved one in pain.
    Judy, I love you, respect you for all you've become, and will help in any way I can.

  3. As one who also lives with a chronic pain disease, I cannot say "I know how YOU feel," but I can say that it takes courage to hurt every day and make a life any way. : )

    There is a new treatment for your kind of pain which has had some success. It basically involves "reprogramming" the brain via guided imagery and other techniques to go through normal movements without the pain signals. I wish I had saved the site. I will do some research. If I find it, I will post the link here. It might be worth looking into.


  4. Thank you Karen, I will watch for that. I hope you will stick with this blog as it grows, and continue to post your thoughts. I think those of us who are on this journey have a lot to say to others on it, to newly diagnosed and scared folks, to loved ones of people with chronic pain, and to those who are lucky enough to have never dealt with it. I intend to try to post every day. Thank you for your input.

  5. Love you, love you, love you...and I am also very impressed with how eloquent you are. Who knew? ::grins::


  6. Thanks Judy for telling me about your Blog! I think this is just what I need. I have severe chronic spinal nerve pain..nerve damage in my thoracic ( mid shoulder area) of my spine. I have dealt with pain for almost half of my life. I have a very rare type of genetic form of spinal nerve tumors called shwannomas. They are benign( thank goodness) tumors that grow out of your spinal cord. I have had over 5 different surgeries to remove these tumors. Unfortunatley the last two were for a tumor in my thoracic spine and left me with nerve damage and I have been in pain ever since..this was 4 years ago.. I was dealing with it ok with acupuncture, massage therapy and I even joined a gym and was riding the bikes with the backs on them and then sitting in their wonderful hottub..really therapeautic! UNTIL... this past january I injured my simply trying to chop ice off my car ( I know stupid move). Well that was the being of the end.. Led to my inability to walk more than a few feet without pain. I even developed left sided chest pain.. thinking it was cardiac I went to the hospital... well to make a long story short..its not cardiac..its nerve related( at least thats their best guess).. I ended up having what looked like a stroke..left side parlayzed for a few hours..then everything came back ..thank god! BUT..left me with left leg needing a cane to walk... and once again..noone can really figure why all of this is happening..I have had every imaging test imaginable! It stinks to be labeled as one who has a pychosomatiform disorder..basically saying its all in your head.. I am presently looking for a good psychologist.. I truly believe that it is vital to be able to connect with others who understand or at least BELIEVE you!!!
    I look forward to "talking" with many people within this blog!


  7. Hello Michele ~

    I'm glad you found me. I've heard of spinal Schwannomas, ouch! What a pain (har - hey, if we can't laugh ...). I know this blog is still in its infancy, but I really hope it becomes a place where people like us can come and chat about the good times and the bad times, and most of all, help each other cope. I remember so clearly, at the beginning of all this, feeling like I was fighting an uphill battle, all alone. Nobody understood, the doctors didn't know what it was, I started to believe them that it was all in my head. But the doctors couldn't explain the changes in my leg - I had numbness, it was cold and purple, and the muscles were wasting. Finally, a doctor put his finger on what it had to be: Munchausen's Syndrome. Somehow, and it's still unclear how, I must be doing something to myself to be causing the problems. Yeah, that must be it. If the doctor can't figure out the problem, it must be the patient's fault.

    Finally, a good doctor stepped in who knew about RSD and nerve pain, and he not only treated me, but helped me get all traces of the stupid diagnosis of Munchausen's off my medical records. Try getting any respect from a doctor or a nurse with that on your charts.

    Anyway, I have always thought it was unfair to not have a test for pain. Or maybe my skin should turn green over the area that hurts. Then at least people would know it's real. Hmmm, maybe some green paint ....

    I hope you'll stick around as we hopefully get more and more people coming and adding their views. Imagine if, when you were first diagnosed, something like this existed where you could ask questions, and people who've been there could help out. I think those of us who've done it alone have a huge opportunity to see that someone else doesn't have to.

    So please feel free to post here and add your voice. I'm sure you have a laundry list of things you've learned over the years. And I'll bet they're different from the coping mechanisms I've come up with. Thank you so much for posting.

  8. Thank you Judy, yes I sure hope this blog grows! I think the Chronic pain group within Facebook is a good place for people ( like myself) to see your link and lead them to here:) The best method for me over the years has been my truly incredible Massage therapist. SHe is a firm believer in alternative medicine. She uses Essential oils and calming music in teh backround, She also knows Reiki. I go to her once a week now..I would go more but unfortunatley insurance still doesnt cover massage therapy! And I am not rich:( I also had used acupuncture but lately with my injury I havent been able to go as I can't lay still for as long as I have to. I am learning about meditation techniques..just starting so I will have to let you know after I master it. I agree that I wish they had some kind of study or machine that registered pain and the source.. for crying out loud they have studies for just about everything else. I guess its easier to the doctors to label you as being crazy and making it up!
    I am in the process of reading a couple of books. One is a book by a woman named Lynne Greenberg called The Body Broken. This is her true story of her battle with pain. I actually saw her on the today show. What a true inspiration. I am also reading You Can heal Your Life by Louise Hay.

    Talk soon

  9. Hi Michele ~

    I too have found meditation helpful if for no other reason than it helps me sit still, center, breath deep, and think about something other than my pain. At first I would only sit for 1-2 minutes at a time. I had to be patient with myself. Every minute longer that I could sit still gave me longer to get control over the pain. It's all about maintaining control. Once you lose control, it's very hard to get back on top of it.

    Best of luck, stay in touch, and let me know how the book is. I'll put a link to it if it's good. We need as many positive techniques as we can find. I always say "at this point, I'll try anything once," especially when there's nothing to lose, like with meditation or a good book.

    Thank you for writing,