What I would like to know is how often do you travel? How often and how well is traveling for you? Any pointers or things you have encountered that made it much easier for you and less physical?
I will share my experiences traveling to get the ball rolling. I am very interested in your thoughts on this topic, so please feel free to comment and no worries. Thank you.
I know from my own experience, because I work part time with close friends, since my time these days, is spent needing days where I can’t make it to work or need to switch days due to appointments. My close friends have a company that is able to work with me and around my schedule, unlike a company situation. Totally another topic.
Anyway, back on track to this topic ahahaha. I work a part time job and this job requires traveling, on planes. Once I am on site, I am not doing anything strenuous or nearly as close to what I used to do before my spine surgery, but I am very happy to be back doing what I love.
That being said, I have learned to travel as lite as possible, my luggage is the size of a carry on and I still check it. It would completely wear me out to lug that through the airports, lift above my head on the plane (which I could barely do before my surgery and definitely can not do now). I ask for help when I feel I can’t do something, I have asked to be put through security with help because I can not stand in those lines like that anymore without extreme pain. I slowly walk through the airport and arrive earlier then I need to so that I am not rushing because rushing is not an option for me at this point.
What type of topics/things would you like to discuss?
I mean, I’m an open book, want to ask me questions, feel free! Want to bring up things to talk about, do it!
As I am sure you have been asked, time and time again “Please rate your pain from 1-10, 1 being the least and 10 being the worst, how much pain are you in?” Now, I would like to hear from you on this subject because my first thought has always been this:
First, they would need to grasp what my definition of what my 1-10 is. So I have explained it as such, “You know when you have worked out really hard, or maybe utilized muscles in a different way for an entire day and how soar your body is the following day? Well that feeling, for me, that’s a good day, as in, let’s go run threw the fields and jump and play So how does one actually rate that on your scale of 1-10?”
So has anyone else figured out a different way to explain that to someone without Arthrogryposis? Penny for your thoughts?
Also, as you have aged, has your tolerance weakened? I noticed lately my joint pain is greatly increasing. From the sharpe, stinging sensation that could last for a few hours to a few days, to the un-easy feeling of the joint just needing to crack but never does. That pressured feeling that only gets relieved by cracking or popping it but no matter how much you try to stretch it, it just will not let up.
Here is the skinny, Arthrogryposis Multiplex Congenita (AMC) is a congenital neuromuscular disorder characterized by muscle weakness and associated joint contractures. At birth, babies frequently have clubfeet and flexed wrists but can also have contractures of any joints in the body. Muscle weakness is associated with a defect in the anterior horn cell of the spinal cord. This area of the spinal cord can be considered the power plant for the muscles. Since it supplies the electrical current from the spinal cord, to the motor nerves which feed the muscles which they move. AMC has similar basis of anterior horn cell disease as polio does and with aging, it has similar problems with over use issues that polio does.
Little is published about Arthrogryposis and aging but of the few articles, it supports, as the person ages, they become much more disabled.
What we all know, who live with this, is that it hasn’t stopped any of us from doing what we wanted and how we wanted. From my perspective and possibly some of yours, I learned how to crawl, talk, walk, tie shoes, run, jump, ride a bike, think for myself, go to schools, drive, go to college, find a job I love, just like everyone else. The only difference, aside from the obvious, I can truly say, I figured it all out as I went, as I am certain many, if not everyone else has.