I haven't blogged in over two months, simply because I've been listening to my body, which was yelling at me to "SLOW DOWN!"
In order to keep my symptoms at bay, I have to get plenty of rest, stay free of illness and keep my stress to a minimum. Well, I was doing fine with staying healthy and getting plenty of rest, but the stress factor was another story. I was stressed about the release of my memoir, my mom was diagnosed with breast cancer (she's going to be fine) and my husband was part of a big lay off at work. I had far too much on my mind causing severe pain in my muscles (particularly my left shoulder). Having Steve and the girls rub my back, along with using my Thera Cane and stretching was not helping. I've got a really high pain tolerance, but eventually I couldn't take it any longer and had to go to Urgent Care. Ugh, I was NOT happy about that, especially when they decided to run an EKG! Of course all was well, because it was indeed my DRD symptoms telling me to slow down!! So, I temporarily stopped blogging, took more time out of the day to rest, as well as stretch those cranky muscles. Often times, things happen that we cannot control, but how we choose to deal with them is entirely our own decision. And we have to listen to our bodies!! I'm pleased to say that the knots in my back are gone, Steve is expected to receive a job offer in the near future and my mom is nearly done with Chemo! As always, thank you for all your support and love!
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A special than you to Tom Seaman for going guest blogging again! I have been so busy trying to get my memoir out there, that I haven't blogged in two months!!! That is going to change. I promise that I will have one of my own entries up by the end of the week! I have lots to share with you all!! In the meantime, please read Tom's blog entry below.
From severe chronic pain and morbid obesity to a joyful bike rider! When you look at this picture, you see a regular guy riding a bicycle; and that would be correct. I am just a regular guy doing a regular, everyday activity. However, this wasn’t always the case. What you don’t see in this picture is a former morbidly obese, depressed, angry guy in severe, chronic pain. When dystonia entered my life, everything stopped, or seemed to stop, as everything I did was no longer possible for me to continue. Work couldn’t be done. My masters degree that I was pursuing at the time quickly became a lost dream, I couldn’t travel…heck, I could barely sit or stand without crying pain. Because of my sedentary lifestyle with disabling pain, a terrible diet, and medicating myself with alcohol, I gained a lot of weight. I was well over 300 pounds, a long way from the 190 pounds I weighed when dystonia began. I was a recluse, holing myself up in my house for years, embarrassed and ashamed at what my life had become. Five years after my diagnosis, I reached a point where I was afraid I might die from the punitive lifestyle I chose for myself; all done for the purpose of avoiding my physical and emotional pain, but my escape actually made me worse so it was a fruitless endeavor. A decision had to be made; continue this destructive lifestyle and suffer the consequences, or make a change a get busy living. I chose to live. I wanted a different life and would do anything to make it happen. Each day I took baby steps by exercising and changing my diet. Each day I added more things to lose weight and also gain greater control of my dystonia symptoms. Unfortunately, I developed some problems in my back that made walking uncomfortable (my main form of exercise), so I took to riding a bike to get around the neighborhood. I felt like a kid again so I began to ride further. Wow it felt good! While I don’t go very far, maybe a few miles, I do enough to get my heart rate up and break a sweat. Some days I will really push it and get in a good workout, while other days I will roll around and just enjoy the scenery, something I missed out on for way too many years. To everyone who sees me riding a bike that doesn’t know my story of pain, obesity, and on the verge of suicide, I am just another person out getting some exercise. This is true, but what they don’t know is that this is a guy who almost wasn’t even here at all. Most importantly, they don’t see the immense internal joy I now feel just to be able to sit on the bike again, let alone ride it! So grateful to be alive, I love riding around and seeing a fox run by or a rabbit staring at me from the bushes thinking it is camouflaged and I can’t see it. I love seeing the colors of the sky change in the evening as I ride. I love feeling the wind on my face, the way the bike banks on turns, and how my heart feels beating through my chest; things I never thought I would experience again after my diagnosis…ever!! To anyone looking at this picture it appears that I am just a guy out enjoying a bike ride…and you are absolutely correct. For the first time in years, without worry or fear, I am finally just a guy out enjoying the ride…the ride of his life! Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey (2015). To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @dystoniabook1. Sometimes life can trigger unexpected emotions that one can not control. For me, that was watching one lonely tear roll down my daughter’s cheek as she waited for three of her teeth to be extracted. More than anything, I wanted it to be me laying back in that chair. I wanted it to be me, scared for the pinch of the needles. I wanted it to be me anxiously waiting for the unknown to be in the past. And then it hit me…This is how my parents must have felt at each and everyone one of my painful appointments I had as child. And before I knew it, the memory of the most painful day of my life ran through my mind as though it was yesterday. As a very young girl facing yet another test, my father stood up by my head and my mother stayed toward my feet. Looking at their brave little girl, a tech explained the test to all of us. “They will be placing needles into the nerves of Jean’s foot which will send electric currents through her legs. If she feels pain, it means her nerve endings work.” Without warning, the tech began with my right foot, which caused me to flinch with pain. “It hurts,” I cried. The currents immediately went through my right foot again. “This time I need you to tip your toes towards your head, sweetie,” the tech informed me. I obeyed the tech’s request, and cried out in more pain. The cry was bitter-sweet to my daddy’s ears. “Okay,” the tech said, “We’re done with that foot. Now, we just have to do this on your left foot. Then we’ll be all done.” “No,” I whimpered as a tear rolled down my right cheek. My dad bent down and whispered in my ear, “You squeeze my hand as much as you think it hurts, and then I’ll feel the same amount of pain as you. If you do this today, I promise that you will never have to do this test again.” He gently removed the tear from my cheek with his thumb. “Okay,” I looked at my dad with all the trust in the world. The technician began again. I held my breath while squeezing my Dad’s rough hands as hard as I possibly could. As I think back to the fire running through my legs during that horrible test, I can’t help but be grateful that I was the one on the table. Yes, I was a strong little girl who could get through the physical pain, but to be the parent and watch your child suffer through countless tests would be far more than I could ever handle. I not only feel blessed to have three healthy children, but I am also fortunate to have strong, loving parents who never once showed me how terrified they must have really been. One of my favorite things to do since my receiving my new diagnosis is to cook. It's something that I used to despise simply because it was so physically challenging. I could barely use a can opener much less chop and dice all those veggies that taste so good. All that has changed and now I cook a homemade meal nearly every night for dinner, so when my daughter passed her summer school class (testing out of 8th grade math so she can take 9th grade math as an 8th grader), I knew I had to do something special.
Winona spent hours studying for the first six weeks of summer, so the least I could do was spend a couple hours making some of her favorite foods. I made lasagna (with a sauce I made from scratch and froze a couple weeks ago), Olive Garden's Zuppa Tuscana and Peach Cobbler! I know that this may not seem like a big deal to some, but to me this was huge, because Winona used to have to make ME dinner! When I was at my worst, I physically couldn't move around the house in the late afternoon/evening and making dinner just wasn't an option. My sweet giving daughter would make peanut butter and jelly sandwiches and we'd eat them picnic style in my bedroom as we watch Curious George and Dragon Tales. At the time, I felt terrible that I wasn't able to be the mom I so desperately wanted to be. These days, I'm able to be the mom I always desired to be and SO MUCH MORE! Last nights dinner was a success! Yes, it took me a couple hours to prepare and I'll feel the knots in my back for a couple days, it was worth it! If I can make these dishes so can you! Lasagna http://www.yummly.com/recipe/Easy-beef-lasagna-304084?columns=3&position=2/56 Olive Garden's Zuppa Tuscana http://www.momontimeout.com/2011/11/olive-garden-zuppa-toscana-soup/ Peach Cobbler http://www.gonnawantseconds.com/2015/06/southern-peach-cobbler/ These are all easy to make, but are delicious as well. Happy Cooking!!! I have always loved the idea of traveling. It didn’t matter to me that I couldn’t walk to all the important sites and that I could only see the beautiful views from the car window. I still wanted to see as much as I could. Luckily for me, my husband enjoys site seeing and back in the day he would carry me to any sites that I had to get a glimpse of.
This past week, I was fortunate to spend a week up in the Boundary Waters at the lovely Kawishiwi Lodge. It’s as close to the beauty as one could get while still staying in a cabin with running water and a nice cozy bed. Sure, I’d enjoy taking off for a week and roughing it in a tent, but at this point in time, I’m not quite sure how my Dopa Responsive Dystonia would handle it (the 5 hour drive was hard on my back and neck). But that doesn’t mean that I don’t want to get out there and see some of the Boundary Waters of Minnesota. As many of you know, if I’m given an opportunity to try something new, I have to do it, even if that means pain afterwards. So, while in the Boundary Waters, Steve and I took a two hour paddle into God’s Lakeland via a canoe. The beauty is unexplainable and the sounds can be deafening. And I loved every second of it! Steve and I saw a little duckling chirping for its’ mother, turtles sitting on logs in the water and rocks bigger than many buildings downtowns Minneapolis. These are all things, that one can’t see from the comforts of their own car and I’m grateful that I have the physical capabilities to get out there and experience it first hand, even if that means extra knots in my back for the next couple days. |
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