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3 responses so far ↓

  • Amber // Apr 22, 2016 at 12:35 am


    I thought I knew pain. I’ve lived with pain for years after my ulnar nerve was damaged in surgery which led to CRPS. But I got used to the daily pain, learned to live with it, and moved on in my life. I thought I knew how to deal with pain.

    But a kidney stone is a whole other pain. I’d had several over the years, they hurt like crazy, I took pain meds and passed them on my own or had them broken up so I could pass them. The pain went away a day or two after I passed the stone.

    But this January, something changed. My kidneys designated themselves as a kidney stone factory and I started producing and passing stones. Not just a stone or two, but passing stones DAILY. It was ridiculous the amount of stones I was making. Since January, I’ve passed more than 50 stones.

    Like I said, I’m no stranger to pain. But kidney stones had always been acute pain that went away. Constant pain in my kidneys and following my urinary tract was new. I thought it would go away at first, like my other stones. But it didn’t.

    My urologist treated me at first, but then he made a sudden change of attitude when I’d passed about 15 stones, mainly because those stones were not showing up on any CT. In spite of the fact that I presented him with several of the stones, he told me he didn’t know why I was in pain. Not only that, but at my appointment, he wouldn’t even let me see him in the privacy of a room, he confronted me in the hallway, just inside the waiting room. He didn’t believe that I was in pain.

    The frustration of not being believed started all over again. I saw a nephrologist who thought it might be a couple things and told me to go home and look them up. I did and realized that none of them matched my symptoms.

    I’ve always been a researcher, it is how I deal with diagnoses and not understanding what is going on in my body when it seems like it doesn’t make sense. But in all my research, I couldn’t find anything that matched my symptoms. There were a few things that sounded similar – Intercystial Cystitis and Medullary Sponge Kidney – but they didn’t match everything.

    I had to find a way to deal with the frustration, since research was only making things more difficult emotionally.

    I felt myself falling back into depression. I knew that depression worsens pain, so I needed to help myself. I increased the frequency of the sessions with my therapist and my psychiatrist increased the dose on my anti-depressant.

    Because of the pain, I ended up spending a lot of time in bed or on the couch. One of the only things that helped with the pain was heat, and unforutnately, my heating pad isn’t very mobile.

    I started training my dogs. I had recently adopted a new dog, so he had a lot to learn. I also worked with my retired Service Dog, and we even went to a show and competed in rally. I spent some time volunteering at a local doggy daycare, where I could distract myself from the pain by playing with the dogs.

    Animals are a real connection for me. They accept me exactly as I am, regardless of the humans who doubt my experiences. I could play fetch from bed or take my dogs for a run and they are just as happy. They are excited just to be with me. That is the connection I needed.

    It is important for anyone struggling with pain to find a way to be connected with the world. It is so easy to focus on nothing but the pain, but that does us no good. As I focused on my dogs, customer’s dogs, and the customers themselves, I found the depression moving to the background. I could distract myself from the pain more too.

    I’m not saying that it is a cure. My pain is still there, the doctors are still confused, and I’m still frustrated. But sometimes, focusing on something else does us good.

  • kathy // Apr 27, 2016 at 8:10 pm


    So what do I do now?
    I’ve posted in the past about headaches which I have they are sometimes worse, sometimes better. A lot like life I guess. About two months ago my joints were hurting, stiff especially in the morning. I had a blood test and was diagnosed with Seronnegative Rhuematoid Arthritis. A few days later, in a cancelled slot, I’m in a rheumatologists office and it’s definitely that. Mary Felstiner in her book ‘Out of joint’, says some people when they are told they have this they are struck dumb. I was definitely struck dumb. So numb in my shock I couldn’t even cry. I would lie awake at night staring at the ceiling in shock thinking “what the hell just happened?!” My first thought in the morning being, “did I just dream that I have some terrible disease? Is this even real?” until I tried to roll over. The stiff joints were all too real. The methotextrate, oddly put my migraines into remission but stole all my tears. I dreamed crying all night and woke up dry eyed and stoic in my exhaustion. I darkly decided that people on this drug are not brave just too damn tired to care what happens to them.
    So what do I do now?
    I think it’s ok to need time to adjust. The doctors see people like me every day and they are somewhat comfortable with the disease. Its routine they are even slightly bored with the idea. I find that if you have a somewhat normal reaction to the news, shock and horror, they get upset, accuse you of overreacting. They tend to expect you to be fine with the idea, right now. We are human beings and we need time.
    It’s ok to be scared. My first thought after hearing it was ‘my life is over.’ I dared not voice it, because I would be lectured on my attitude. In sense I’m right; my life as I knew it is over. The disease is very scary, I’m afraid I will look like the pictures on the internet. I’m afraid the medicines won’t work for me. This is normal and understandable.
    This disease used to be called ‘the crippler’, but I’m not crippled yet. I want to continue to live as normally as I can for as long as I can. I don’t let people do stuff for me when I can do it myself. This is easier for me than others as my arthritis doesn’t hurt that much yet. It is a tricky balance, accepting enough help so you aren’t exhausted but retaining a somewhat normal life.

  • Susan // Apr 27, 2016 at 10:52 pm

    I have lived with RSD, now more commonly called CRPS FOR 18 AND 1/2 years now. I had a difficult time getting to the type doctor I needed for quite some time. Mine resulted from a work injury–so you have to deal with worker’s comp insurance. When I did finally find a good doctor who was very familiar with RSD and also worked with a Pain Management doctor, both who had done training at John’s Hopkins Hospital in Maryland, I was very fortunate. I continued to work for three years longer until it had moved and was beginning to encompass my whole body. I just couldn’t keep up with my job anymore. I enjoyed my job and was able to multi-task for years. I did things I enjoyed, such as making quilts. embroidery, and learning to write poetry. As one thing became too difficult I tried something else to distract myself from the ever growing pain. Even though, I had good doctors, I am extremely sensitive to medications, so things that worked for others didn’t work for me instead I ended up deathly sick, over and over. So I kept finding new things to distract me from the pain. One the best, which I still do, is to write to friends, especially older friends and those who have lost loved ones in death. It helped me to express empathy, even crying with them when appropriate. I did this by making cards for them, it was enjoyable for me and hopefully it was of comfort to them. I tried to learn to draw, sketch drawing, but soon it increased my pain to much. So I kept finding new things to help me ignore the pain, but still be of help to someone.
    I gradually took over my mother’s medications and communications with her doctor. She was my primary care-giver for so long. She did so much to help me. But as the Alzheimer’s continued to make her unable to walk or care for herself, I helped her until she had to be lifted. Now she’s in a nursing home. That saddens me. But I try to see her as often as possible.
    One of the things I enjoyed learning to do was writing poetry. I used to walk in the forest with my younger brother. One evening on the way home from work the following poem came into my mind. I went home and wrote it down. I’m going to share it with you now: The title is: THE FOREST
    Horn’s honk, brakes squeal, people yell,
    It’s rush hour, everyone trying to get to get somewhere.
    it’s a common scene, we know so well.
    And the congestion of traffic really makes a stink.
    How I long for the comfort of the forest,
    Today for relaxation you must become a tourist.
    But there’s no calm, no quiet there,
    Rushing to see all you can see before you must return here.
    I don’t need a cruise ship, or an airplane, Or even a car or a train. I don’t want to be a tourist, I just want to go to the forest.
    It’s easy to take for granted the things you can do, When you’re busy rushing to beat the morning traffic. But suddenly everything you do is a struggle, painful, hard or impossible, it’s like you’re hearing a lot of static. You can’t clear it up or make it stop, So you lose the many things you used to take for granted, when you were on top. Now all I long for is the comfort of the forest, I don’t want to be a tourist. Just walk through the trees, Smell the fresh forest air, hear only the birds and bees. Feel the wind as it rustles the leaves. Touch the soft moss on the side of the trees, Drink in the warm sun as it streaks thru the treetops. Hear the crackle of sticks under your feet, the only
    sound to interrupt your thoughts. Such peace and the unexpected beauty of the occasional wildflower, Cannot be found in a 30-foot tower. If only I could go to the forest and walk thru the underbrush, I’d never take for granted the simple pleasures of life, I’d never be in such a rush.
    I wrote so many poems until I couldn’t think of a subject I hadn’t written about.
    I still do all those things, but not as much and only when the pain level allows. But all these “hobbies” really helped me to keep going. I also raise African violets. I have one that was started from one of my Grandmother’s plants approximately 43 years ago. I am trying to maintain some normalcy to my life, while the doctor I have now is changing my medication frequently. Once again, I am sick on top of the pain. But trying to ‘live’ as much as possible as though I’m not on fire and/or freezing all the time. It’s not ever easy but I love to think of the beautiful forests and meadows I used to walk in years ago; where something beautiful would pop up and delight all my senses.

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