Share Your Story: Ann Lavendar

I was diagnosed with RSD in January of 2002.  Since that time I’ve had more than 40 procedures, ranging from stellate blocks (both through my throat and the more dangerous procedure through my back and around my lungs), RFTC’s (radio frequency thermocoagulation blocks), exploratory surgery resulting in a vein wrap around a trapped nerve which seemed to be the culprit (complication following wrist surgery) and finally three tries at a dorsal column nerve stimulator (two fails and one semi-success).  It spread like wildfire during an especially bad exacerbation of symptoms, from my left hand/wrist, throughout the arm, my right arm,  across parts of my back and side, into my right hip and leg and across parts of my face.  The pain was so terrible that when I did fall asleep, I woke up clawing at my face and arms from horrific nightmares of burning alive. When I woke disoriented, I was still burning alive, like some kind of thick oil was splashed over me and set on fire..  I could not take showers, rain felt like flaming hail stones, the slightest touch could make much jump  or even yell out in pain, especially if I was not braced for it.  At one point I took 22 pills a day.  I am allergic to anything related to aspirin, so this complicated my treatment options.  But I took  all different kinds of things, opioids,  muscle relaxers, Neurontin,  and so so many more.  Even medications to counteract the side effects of other medicines.  And I’ll say this about myself, I don’t make a good druggy.  I don’t know what people who like taking things like oxycontin and  hydrocodone and such get out of it.  All I get out of it is something akin to motion sickness and I can’t imagine anyone liking that.  Yuck.  I lost about 80% of my fine motor skills in my hands.  I could no longer write.  I could not button a blouse or zip a pair of jeans.  Every day it seemed like there was something else I couldn’t do.  One day I went to the door and I could not turn the doorknob.  I stood there, I don’t know how long, trying to open the door: angry, hurt, crying, furious, frustrated until I literally just stopped and looked at it.  I call it my doorknob moment.  Until that moment I had lived in a certain amount of denial, that it can’t be real, that it would go away, that I would wake up, that things would somehow be back to normal.  I stood there and realized I had three choices.  I could keep trying to open the door, the same as always and refuse to give up who I had been.  Or, I could give up everything and just not go outside.  Or… I could find another way to open the door. See, well meaning people think they are being encouraging by telling us over and over that we can’t give up, we could still get better.  But they don’t understand. WE have to accept who we are and  where we are, what we are and what we cannot do in order to find out what we can.  That particular moment changed everything for me.  I still have RSD, I am still third stage and it is unlikely I will ever be cured because my illness is far too engrained.  BUT I learned what I could do.  I accepted my limitations, therefore I don’t push myself beyond them, but I learned atrophy is my largest enemy and developed my own physical therapy routine  based in common household activities to help prevent atrophy while doing an activity that lets me feel useful and is a distraction from the discomfort.  I retrained my larger motor skills and tuned them so that I can write again and type. I used puzzles (Sudoku works great) to help the memory problems. I do a modified exercise program. I cut all artificial preservatives out of my diet.  When I did this I saw a dramatic decrease in my swelling problems.  Then I went on to make sure I had a healthy, balanced diet with good resources of natural calcium, which digests and is utilized by the body better than supplements. (I think I forgot to mention falling down and breaking my arm in three places due to the osteoporosis). Today I can tell you I am not well.  I never will be.  I am not pain free.  I never will be.  But I have reclaimed my life.  RSD changed me forever, but I will not give up my life.  I can’t.  Too many women around the world would take every ounce of my pain, ten fold, just for their children to have food to eat or the opportunities that my children have.  I refuse to teach my children to give up their lives because something is difficult.  Today, the only medications I will take is a couple of Tylenol and a couple of Benadryl at bedtime. Last weekend I went skiing with my family.  We go to the beach.  We go hiking and camping.  We ride bikes and go for walks.  We play games, play music, dance and, most important, we laugh.  Laughter is an excellent and natural pain reliever.  My point is not to promote a specific lifestyle. What works for me to help me deal with my pain and manage it may not work for someone else. But there is something that will work for you.  You just need your doorknob moment and allow yourself to accept who you are, that you have limitations, but disability does not have to mean inability. I learned how to open the door another way, and when I did it changed my perspective on life.  It did not give me back the life I had before, but it opened up all the potential that still existed.  Be as active as you can be..  Refuse to cradle that effected limb.  You have the power within you to minimize the ill effects.  Find a word to say when it hurts, especially suddenly.  This is a release and keeps you from clenching your teeth and tensing your muscles, causing more pain and problems in the process.  Learn to breathe through the pain. This helps relax you and lets the pain wash by.  Believe me.  I have lived this for a long time.  I dug myself out of that grave I begged to die in. I won’t tell you that you will be well, but I will tell you, you can be okay. You can live and enjoy life.  You may have to give up the idea of the life you had before, but in doing so, you open up a whole new life before you.  In this illness, that is hope.

One thought on “Share Your Story: Ann Lavendar

  1. Hello! Thanks for sharing your story!

    I’m having a bad week with RSD/CRPS and your story really made me think about limitations. I haven’t put up a Christmas tree because I find it hard to get to the store and buy one, let alone carry it from truck, put it up. Instead I’ve cut holly from my yard and arranged it in a large vase. Decorated with ribbon, ornaments.

    I wish I could manage without meds, but find it impossible. I was diagnosed with CRPS Type 2 after 2 neuroma surgeries on my foot a few years ago. A lot of nerve tissue was removed and I was left with that constant hot burning you so eloquently described. I thought I was the only one with the ‘burning on fire’ nightmares! Taking Neurontin, baclofen, and Nucynta along with blood pressure meds…stay drowsy but can’t sleep at night due to pain. 🙁

    Trying to get through holidays, but seems there is nothing I want except a cure. I can’t afford to buy anyone anything. Very depressed. Work part time as a pediatric nurse, can’t tolerate working more. This disease has really has hit me in the pocketbook both through inability to work full time and cost of meds. Will keep hanging in there though!

    Glad your family sustains you and keeps you going! I have dogs and boyfriend who are great support; other family members got sick of hearing about my difficulties and rarely contact me.

    Thanks again for your story…def don’t feel so alone in this fight!


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