--> -->Before you start to read this blog, please know that you can click on the words that are colored blue to be taken to website that will give an explanation of the word. Thank you for your time in reading today's blog. Thank you to my family and friends for inspiring me to make my writings public and thank you to my online fibromite family for giving me the support and understanding I've lacked all these years!
I was on top of the world. I was working a fabulous job that I loved with great money and great benefits. I had two perfect well-behaved children. I was moving to the state I loved. I was going after the "American Dream". I would have my own home, a nice car, and my children would never have to wear hand me down clothing again. Nothing and no one was going to stand in my way. Or so I thought.
I woke the morning before I was to rent my U-haul and couldn't move my legs. I thought I'd had a stroke. I was terrified. Within a week's time, I was in so much pain I thought of banging my head into the wall to knock myself unconscious. The only thing that stopped me was I feared I wouldn't succeed and would only hurt worse (although I wasn't sure that was possible).
I remember lying in bed as still as I could because every movement was like razors carving up my skin and as if knives were slashing thru my innards. I couldn't stand it when the air/heat cut on cause the air currents moving across my skin were agonizing. I had to force myself to chew food since doing so created driving pain in my jaw. I had never experienced such pain. Me, who had stood proud after giving birth to a 9 pound, 4 ounce, and 21 inch long child with no medication at all........couldn't handle this. My children had to aide me to the bathroom and fend for themselves at the young ages of 5 and 2 years of age.
So begin my trip to a specialist. A rheumatologist. I thought he'd be my savior. He supposedly knew all about the Rheumatic disease that it was suspected I had. I ended up being diagnosed with Mixed Connective Tissue Disease (exhibiting signs of Lupus and Polymyositis), Reynaud's Phenomena, and Fibromyalgia. I was overwhelmed, scared, terrified. I was so glad that I had a doctor who was able to diagnosis me, and who could give me the help I needed.
During the period I saw this doctor, I listened to him wholeheartedly. I was devastated when he told me I would never get better then I was then, that I would stay on medications my entire life and that I would always require care (such as the nurse that then came to my home each day to bathe me, feed me, and help with my medications). When the doctor prescribed me a new medication, or upped my dosage, since I was getting worse and not better, I obediently took my medicine. After all, isn't that what we are supposed to do?
By the time I quit seeing this doctor, I was on 21 prescriptions. My 5 foot 7 inch frame had dropped to 89 pounds. My toenails and fingernails had fallen off, my head had numerous bald spots, and the inside of my mouth was raw and painful. I couldn't move, couldn't eat, and honestly believed I was going to die soon. My children cried often due to my deteriorated health and their own fears concerning my illness.
I left that doctor and his over prescribing ways and settled for a local home doctor who didn't believe I needed to be dosed to the gills! After a year, I was able to pull myself out of my wheelchair and stand with assistance. I remember the first time I walked with help! I remember the first time I made it halfway around the block (with assistance but still walking). I was carried home the rest of the way....but I HAD WALKED!! With each step I took I thought to myself, "Hmpf Doctor......I'll show you".
I ended up marrying (a mistake but another blog for another time) and got pregnant with my third child. Suddenly, it seemed I was CURED! I felt it as early as my second week pregnant. I was ecstatic. Although my marriage was falling apart, and we were losing our home....I could move, walk, hike even! I took the kids and spent 3 months on the Appalachian Trail with them. It, to date, was the best time of my life! When cold weather came my body started to ache again. I moved temporarily in with my parents and the rest of the pregnancy was painful to every part of me....some parts I didn't even know could hurt!
I've never gotten back to that wonderful feeling I had when I was pregnant. I've since had a hysterectomy so I won't get it back again in that way. I did stay in remission from the Mixed Connective Tissue Disease that I had and to date, it hasn't come back!
I'm no longer chasing the American Dream. I'd like to own my own land, and will do so, but it's no longer a motivating factor in my life. I've had to change my perspective in life. I've had to learn how to, each and every day, find the beauty in the world. Often it's the smile of one of my children, or their hug when it doesn't hurt too much. Sometimes it's a butterfly floating past the window, or the leaves as they fall from the trees. Many times it's something I never saw as beautiful before, like the way a millipede moves it's legs when it moves.
I've had to learn to live with things that before I would have never lived with. Sometimes it's dirty dishes in the sink overnight cause I can't bend over to load them into the dishwasher. Or maybe it's having to wear super soft clothing with little to no seams when I go out, even though I think I look froopy. It could be the kids having to eat cold cereal for breakfast or canned ravioli for dinner. I used to beat myself up over these things....but in the long run, is that what anyone will remember?
I've learned to laugh at all kinds of things. I've learned to joke around about the things I can no longer, or rarely do. I laugh when crazy things come out of my mouth because Fibromyalgia affects your brain. I joke with the kids when I'm limping around and they lovingly refer to me as "Mama Gimp". And sometimes I laugh for absolutely no reason at all!
I also cheer the small victories. Shaving my leg, cooking a meal, remembering to call someone, making it through the grocery store, even being able to make the grocery list. These are the small things that I celebrate. Recently I started a new medication and was able to do math. Now, that may not seem like a big deal until you look at my history. Prior to Fibromyalgia, schooling was no problem. I was the straight A, 4.0 GPA student. After Fibro, simply math stumped me. Suddenly, with the new medication, I could do math again! When I told my children and showed them, their faces lit up and they hugged me. We cheered and celebrated all day, much to others people's amazement! Hey, when life gives you lemons.......make lemonade!
I've learned never to judge a book by its cover. I remember one day at a supermarket being outraged that I'd just seen someone pull into a handicapped parking spot and then walk in as if nothing was wrong with him. I figured it was their grandparent's parking decal. I was livid! Yet, now I'm often the person parking in the spot and walking in as if nothing is wrong. Granted, I can make it in, but after getting what I need, I most likely won't make it out so well, or even without help. I remember looking at people who wore baggy sweats, hair undone, and overall looking frumpy and shaking my head. I mean, couldn't the at least take the time to dress? Now, I'm the one wearing frumpy clothes since my skin won't tolerate anything else. I'm the one with messy hair since I couldn't lift my arms to reach behind my head to brush it. Yeah, I don't judge people by what I see anymore.
I've learned that playing a board game with your kids means more to them then wearing new clothing. I've learned that cooking a meal and being able to feed my loved ones brings me much more satisfaction then driving a new car. I've learned that the "American Dream" wasn't my dream after all.
Fibromyalgia has changed me. It's made me see life for what it truly is. It's made me appreciate those I love and those who love me even more. Would I take my life before Fibro if it were offered to me again? Would I choose to live pain free if it meant going back to who I was before Fibro? Sometimes I get depressed and feel overwhelmed. Sometimes I long and cry for a day with no pain. Sometimes I complain. Would I choose to live pain free if it meant going back to who I was before Fibro? Nah..... I don't think so. Fibro, in a way, saved me!
No comments:
Post a Comment