Monday, March 24, 2014

Do not let CRPS define you

The number is 80 percent. 80 percent of folks with CRPS go into some sort of remission. I have gone from working on the mission of spreading positivity regarding our affliction to distraction regarding my other hobbies, history and amusement parks. I recently wrote and released a book regarding Pennsylvania Amusement Parks called "Great Pennsylvania Amusement Parks Road Trip." I have not let CRPS dictate me. I do not think about it. The pain is much less. I hurt every day but I do not think about it. I move around as much as I can, I do the things I want to do. I know my limits and I expand my limits daily. I crutch walk to work a mile out and back on a daily basis. I have started working my way back into the classroom. Last week I had a lump removed from my breast in an unrelated condition. I am recovering steadily from that. I took the bad hand of CRPS and turned it into a positive. I have had more sitting time on my hands and more time for my brain to be idle while I have put teaching on hold. I ended up writing that book about my two favorite hobbies, history and amusement parks, and it has ended up being very successful. It has gone out into stores and I even released an e-book version of it a few weeks ago.
We saw our first spring flowers on Saturday. Let today be your first day of spring into regaining your life.

I am prompted to re-up my efforts on my page and in my page and group because of something that happened last night. Even though I have backed off on my groups I still see posts pop up occasionally regarding our condition. I saw one last night that troubled me a bit, one of the main reasons I started the page and group to begin with. I saw a negative person who saw a bad outcome discounting my positive outcome. She said something along the lines of "that is not normal, people cannot expect that," in regards to my state of partial remission. Regardless of the statistic that 80 percent of folks see partial or full CRPS remission, because of her norm, no one else could have a positive outcome. The reality is that if you follow the advice of PT to move around as much as possible, over time you will see a better outcome. It hurts a ton to start, but slowly and steadily you will see a better outcome. You will feel less pain and get to see the world again. As long as you can taste your favorite food, maybe smell your favorite flower, or feel the winter turn into spring, you already have it better than so many people. CRPS is not a deathwish. It can, in fact, be a blessing that helps you better understand the world and motivate others to overcome their problems. Please spread the word to all of the negative folks that this is something that you can overcome. This is something that 80 percent of folks overcome in some shape or form. Please believe me. Let today be your first day of spring and a new beginning towards recovery.

As soon as my PT started me with movement exercises and the program from the NOI group called "Recognise," which you can find online, I immediately started regaining my movement and feeling less pain.

The other thing that saved me was sticking with my two favorite hobbies: history and amusement parks. My two other groups are with as my blog for that, and with as the blog for that. Find a hobby that interests you and run with it. I wrote a book about my hobbies as a result of allocating the newly found time I gained from this condition. It was a dream of mine to write the book and I followed it. Please follow this path and do not let the negative folks on the net make you believe that you are hopeless. You have got this! Follow through. It is a difficult road but please let a positive attitude and regaining things define you.

Tuesday, February 18, 2014

Catching up......

The last few months have been particularly busy for me and I have been unable to find the time to write out posts for here. The last time I posted, way back in December, was right before I released my new book. It was the result of all of the extra time I have not working in a teaching job. It is available on our other blog, using the dropdown menu, through Amazon and many independent book stores.
Since I released it I have done so much leg work for it. I am back to write a post now though because I feel it is important to catch up. I have not thought too much about the condition because it is my new normal. I have made such tremendous strides that I can actually carry my crutches quite a bit of the time instead of having to be on them solely. We have made the best of it though and not sat around worrying about it. I have followed everything PT has told me to do and just kept on keeping on. On Sunday we checked out the Lake Erie ice formations and some snow covered roller coasters which was pretty awesome. If you follow that link you can see the cool stuff that we saw. It was really quite amazing and something I would recommend checking out if you are near-ish to one of the frozen Great Lakes.
The biggest piece of advice I give you is to follow all directions given by medical professionals, stay positive, keep moving and do not think about it. Writing this book is what has kept my head up through this. Keep your head up, find a hobby and run with it.

Friday, December 13, 2013

Great News: Working my Way Back to the Classroom

Beyond the fact that every day my mobility has improved, I have also been extremely busy! For a long time I have been working on a project that is just about wrapped up now. As I may have mentioned before, prior to my injury, my second job for many years has been doing a sitting security job. At the onset of my injury, they were kind enough to offer me full time hours, for which I am extremely grateful. My career is in education and last Thursday was my first day back, just subbing for the day to see if I could handle it. By the end of the day and all of the next day I was in excruciating pain, but it was 100 percent worth it. I really missed those kids and so many of them came up to me, asking how I was doing. I get emotional just thinking about how wonderful that was. Since I have Thursdays off from my security job, I will slowly work to get my endurance up to handling a classroom again. I went in again yesterday and it was absolutely wonderful. I was home again. A little part of me was lost until I was back in the classroom again.

But anyways, as far as progression, I am following all of my PT orders, doing the prescribed stretching and movement. That is key. Every single day since I started treatment, I have felt a slight bit more mobility. It is small, but tangible. It is a blessing and wonderful. Who loves the way the sunlight looks on buildings as the sun is setting?

Tuesday, November 26, 2013

Walking and Great News from my Neurologist

"The natural instinct with pain is to nurture it, but with this, you have to work through it. Movement is key and if you keep it up you will likely be back to full functionality within a few months"

The news that has made my day! I am doing wonderfully, working at moving as much as I can and doing the prescribed exercises from PT. The movement hurt like anything to start, but with my diligence and listening to my doctors and therapists, I have gotten to a point where I am very near functional walking. The pain is still there and the stiffness in specifically my big toe and the flexing of my foot are still there, but they get slightly less each day. I do have a bad day every little while, but that is to be expected. I could really not ask for much more. All I can say is MOVE, MOVE, MOVE! I work to do a little job each day or every other day. Wiping down the floor, doing the dishes, doing the laundry, vacuuming, cleaning out the car, washing the car and more. Those little jobs in addition to trying to walk (with crutches) about a mile each day going to and from work have likely brought me to this ever increasing level of functionality. I do have to take things in moderation, so I do those activities incrementally, but I make it happen and you can too! If you do not move, things will hurt worse and worse and possibly spread. MOVE! Those giant trees did not grow instantly, it took time. With time, your condition WILL get better. Be of the 90 percent of CRPS afflicted folks with full or partial remission.

Monday, November 25, 2013

Thanksgiving/Start of Gift Shopping Week!

This week is a special week in regards to Thanksgiving, one of the most laid back holidays where you can watch the parade on TV, the dog show on TV and lots of football and movies along with gathering the family to have Turkey, Stuffing and all of that delicious food. Us in the Northeast United States are due to get a large snowstorm on Wednesday and that will definitely wreak havoc on our Thanksgiving plans, but we will see when that gets here. Hopefully you have a turkey, shopping, football or something else planned for this holiday.

I have to say that I am personally very thankful to have a wonderful fiancee, two wonderful bunnies, a wonderful set of two joined families, the beauty of life and the opportunity to experience life. My family came out for a visit this weekend to Pittsburgh and we saw the city's official Christmas kick off, Light Up Night, where the entire downtown area shuts down for a huge holiday celebration filled with lighting up all of the trees and displays, ice skating (I had to sit that one out lol) concerts, and FIREWORKS! They close off three of the main bridges, one of them shoots of fireworks and another has concerts and then serves as a great place to check out the fireworks. They shot them off of the bridge deck and then they had this wonderful waterfall style set of fireworks that streamed off of the side of the bridge, really a sight to see. We also visited the Carnegie Museums of Art and Natural History, checking out cool stuff, with my favorite being the impressionists Monet, Pissaro, Renoir and Van Gogh along with lots and lots of dino bones! Really a pretty fun weekend, plus my family wheeled me around, which I cannot thank them enough for. Think about what some of your favorite things that you are thankful for.

As far as with the condition, each day, following my prescribed stretching and strengthening exercises I have improved a bit each day. I had to splurge to get a pair of New Balance sneakers and boy have they made a difference. I saw a guy who fitted them to be perfect for my foot and I am getting closer and closer to natural movement. I cannot stress enough how important it is to move around and I wish I had gotten these shoes earlier in the recovery process because I would likely be even further along! I am set on the path to remission, are you? Are you among the 90 some percent of folks that have or eventually will go into remission? You can do it!

Friday, November 22, 2013

Mark Personal Victories!

It is important that you look at every little incremental improvement and mark them. These are the steps to getting yourself out of a negativity rut and in the mean time, after a while, all of these incremental changes will be pretty significant in the long run. I have brought myself to a hobble and support my own weight over the last few days. Yesterday I busted my hump going through my place and cleaning. Scrubbing, reorganizing, de-junkifying and more. Yeah, that's right, I just made up a word! Another day more little progress. I still have to crutch to get around outside because of the sheer distance and the danger of walking on falling apart sidewalks, but I can do nothing but look at things positively. Yesterday they found I had degeneration of the bone, but it is something I can slow/manage over my lifetime. Another day, another small tick up in the path towards remission!

Remember that over 90 percent of folks go into full or partial remission. Never forget that! Hopefully I'll be back to enjoying coasters in the spring and back into my career as well. We've got this!

My family is coming to visit this weekend and bringing my girl Sophie, a Shiba Inu

As you may have noticed, I am hardcore into roller coasters, as is my Fiancee and we have made this calendar. If you like keeping the things you do organized and like to look at nice pictures, or you want a snazzy gift for somebody please help support us and get our 2014 calendar at

Wednesday, November 20, 2013

Let your rehabilitation process grow!

Follow the tips your doctors give you. Follow the exercises your therapists give you to a T. The exercises may seem painful, because they are, but the further you do them and the stronger you get, the less pain you will have. Of course you will always have bad days, but follow through! There is so much beauty to me in the process of agriculture. If you break down the process, you eventually plant your plants, whether they are corn or in this case, grapes. They don't just go plant them and eventually get grapes, they need to take care of them by weeding around them, watering them, fertilizing them, treating them with things, trimming, making sure a possible blight does not spread and more. It is a process, just like your healing process. Never forget that you can work towards remission with complex regional pain syndrome. You do not just take a medication and then it gets better, you have to work at it. There is no quick fix, it takes work. If you do not work, your pain will get worse and functionality even more dismal. You will have a bad day or two still, but imagine that you are farming and the end result of your work will be partial or full remission.