Today has not been the greatest on record so far. Thunderstorms and pain plus three kids out for the summer and trying to get two of them ready to go to college equals one very cranky, tired Mama.
Before I continue, I want you to know that if you want to, you can leave comments at the end of each post. I would like to get to know you. I wonder who reads this blog. I also wonder if it is helpful to anyone.
I am nobody special. Unique, probably. Out spoken, definitely. But I don't fancy myself some disease related guru or legend in my own mind. I am just a woman who was born with a disease that affects my life way more than I would like. I am other things too though; I am a wife of 20 years to man whom I both adore and want to smack depending on what comes out of his mouth. :) I am a Mother to three not so small children; two of which are heading off to college in the fall. Life would be far less funny without those little gremlins. Them, I always adore! I am a friend to some of the strongest women I have ever known. I am in awe of them. The way that they conquer each day with the amount of pain they are in leaves me humbled on a regular basis. I am an artist and a writer who never feels that her work is good enough even though others gush over it. I am a animal lover and a gardener and I have a heart for the children who show up at my house broken and lost because maybe their parents didn't want to be parents. I do all that I can to help them because I know just how it feels to be them.
I was born with fibromyalgia but for years I did not know that it what it was. I hurt, it seemed like all of the time as a child but I was abused and attributed the pain to the constant beatings. Who wouldn't? My Grandmother had Fibro, my Mother has fibro, my Aunt has fibro. I pray often that I did not pass it to one of my children, though I'm starting to become more and more suspicious of one of them. She complains that her legs hurt at night. It's agony for her after a day of running and playing on the trampoline -'Mine always did too when I was little.' Her arms and back ache - 'oh, no!'. Her clothes hurt her skin -'Please God, don't let this happen to her. She's just a baby!' I'm terrified for her.
By the time I was 25, I was certain that I had arthritis. Between my childhood and my work in health care, lifting people, turning people, bathing- and once a man that weighed 300 pounds more than me fell on me and it took a year to heal from that damage. I knew you couldn't do much for arthritis so I went about my merry way, taking lots of Tylenol over the years until I was 28 and the pain literally dropped me one day.
We had an apricot tree outside of our fence that was just loaded and I wanted to make jam so I grabbed a basket and went out to pick a bunch of them. The basket was too heavy to carry all the way back around the fence so I put it over the fence in the backyard and started walking up the sidewalk to get to the front gate. I felt great until I got to the corner of the fence; it was just all of the sudden. No warning. Pain hit my entire body and took me down. I grabbed at the fence to try to hold myself up but my arms were not going to support me. I sat on that sidewalk for about 40 minutes before I had the strength to crawl to a handhold and use the fence to pull myself up. I leaned on that fence for support until I made it inside the yard and then crawled on hands and knees to the front door. I had NO IDEA what was happening but I was TERRIFIED! I called my husband at work and he took me to the E.R. but they found nothing wrong. They just gave me some pain meds, told me to follow up with my family doctor and send me home.
I was constantly nervous until I got in to see my doctor. So afraid it would happen again. He sent me for blood work and that's when the tests began. Months of tests. CT scan, MRI, tests for Lyme disease and Lupus and STD's...I thought it would never end. Every test came back negative. That is when my doctor did a pressure point test and asked me 20 minutes worth of questions and said, 'You have fibromyalgia.' Okay, so now we know what it is, we can cure it. I was that naïve. Back then, I thought if it wasn't one of the incurables like AIDS, then if it had a name, it had a cure. My doc gave me more pain medicine and told me I needed a rheumatologist and sent me home.
I am a researcher so I looked fibromyalgia up online. The more I read, the more I said 'um...no! I do NOT have something incurable! He just made a mistake.' So I got copies of all of my medical records and set out to find a doctor who would tell me this was not fibro, it was something curable. No big deal.
11 doctors. Yup! I was determined! 11 doctors told me I had fibro. I took the pain meds until my family decided that if I took pain meds I would end up being a junkie someday (Never listen to people who do not understand what is wrong with you!) and then for the next 11 years, I did my best to ignore the pain. What I did not know was that I also had cmp and left untreated, it progresses. It too is incurable but I left it untreated because I decided I was done with doctors and it worsened my fibro as it progressed.
I finally decided I had had enough and found a team of medical professionals to help me. I have tried every new drug out there and all most died a couple of different times from allergic reactions. I was sent to pain management as a last resort and it has been the best thing for me. I have a cardiologist (because I had a heart attack at 36. I didn't know that my body quickly converts processed sugars into arterial plaque), I also have a chiropractor, a GP and a Pain management doctor and they all work together. I love that about them! My PM doctor insisted that I join a gym and swim in the salt water pool. Something in the saline helps the muscles and I do feel better after a swim. I have lost 50 pounds. I stretch and eat healthy - something I had to seriously educate myself on. Overall I am much better today. I still hurt but I can function. I am having more good days than bad.
I keep encouraging people to treat your whole body. Chronic pain is not just in your muscles, it's all over. It even gets in your head. We need hydration, fruits and veggies, protein, whole grains but we also need sleep (something hard to come by for many of us), we need gentle exercise so we don't get stiff and sore as often and we need our friends and families to understand. I know not everyone wants to bother to understand so I stay away from those people. The negativity does me no good. I have met some amazing people with these diseases. Strong, determined people who I am proud to call my friends. You are not your disease. You are an amazing person who just happens to have a disease.
Now, I need a nap :) Sweet dreams, ya'll!
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