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.