How I’ve gone from having an invisible disability to being an entrepreneur….

This post is a bit different than all of my past posts.... Instead of posting specifically about my TM issues, I am posting basically a bit of a story on how I've gone from being someone that essentially has an invisible disability to someone that is essentially an entrepreneur. This is being done because one of my TM friends in my group is starting up an actual organization called sickbiz.com... The organizations mission statement is: "Sick Biz is an organization dedicated to providing support, resources, hacks, and hope to entrepreneurs affected by chronic illness, pain, disability, and sickness." Hilary Lauren Jastram is the person that has put this together and she is one of the most creative, smart, positive and driven people I know and when she asked me to be a part of this, I was honored and more than happy to contribute.... So with that being said.....Here We Go....

 14 May 2008 I was hit with a rare disorder called Transverse Myelitis....basically my own immune system attacked itself and attacked the covering of the nerve along my spine in my tailbone area. This happened at 1:00 am and woke me from a sleep with burning pain. Within a couple of hours I was paralyzed from the waist down. It left me with quite a variety of invisible symptoms such as some pretty severe neurological pain, aches, spasms, the loss of almost all muscle strength in my legs, fatigue, problems sleeping...and I could go on and on…..but bottom line is that this disorder and all of these symptoms have unfortunately taken me out of the conventional work force. Through some intense physical therapy I did manage to get back to where I can walk with a cane and that’s kind of what led me into one of my ventures….

So that brings me to this...when I started walking with a cane I went to the drug store to try and find something that was somewhat "stylish" as I don't typically like your normal run of the mill things...I'm pretty eccentric when it comes to my tastes in many things. Well, that cane lasted about a month before I decided that it was too boring and I had to do something about it....

One day I was at the store and saw a wood carving magazine with an article about wood spirit carving. I got the magazine and read through it and then went on the internet and found some more info and as luck may have it, my wife’s relatives from many generations ago, were shipbuilders and there was a really nice old set of wood carving chisels that were pigeonholed in the basement. So, I broke out the tools and dug around in the back yard for some acceptable wood and went to work. I've always had a knack for working with my hands but it has always been on mechanical things...although I've always enjoyed and appreciated the beauty of carved wood. Well, here was my chance to give it a go and to have something that made me feel useful and to also keep me out of my wife’s hair.

Things are constantly a work in progress but I must be doing something right because I have had very positive remarks from everyone that has seen my canes and carvings. I even had some very positive comments..comments that my carvings are "handsome and strong" from an artist that I know in New York that also has TM. I’ve sold a fair number of my canes along this journey and the one that really validated what I was doing was when a Facebook friend happened across a picture of one of my canes and he ordered one. This friend is in Finland and he is a professional photographer and artist. Talk about inflating my ego….. So I’ve continued on with my carvings even expanding to making some wood spirit statuettes and everything I make is done on personal request. I don’t make an inventory of canes to keep on hand and sell when I get an order. I make them individual to each person.

Always looking at new things as my interests change and expand, I’ve also started making a few Cigar Box Guitars. You don’t know what they are…?? Do an internet search for them, I think you’ll be intrigued. Next on the list is learning how to play the guitar….LOL…

With the onset of my TM, and the beginnings of my wood carving, I was becoming very interested in getting involved in the support and advocacy of Transverse Myelitis since it was such a rare condition. At the time, being a Facebook newbie, my TM Folks group came about as a pure accident…...I was meeting other TM friends online and had gathered a few names and I wanted a way to keep them separate from my other Facebook friends, just in case I wanted to send some of my TM friends some info or a question…. Again, being a newbie on Facebook, I really had no clue what I was doing but I happened across a button that said “Start Your Own Group” so I clicked on it and went through the process of starting a group just to keep my TM friends separate. Unbeknownst to me at the time, I discovered that this group allowed each of us to post comments and responses to each other. Well, I thought that was a cool feature and I kept adding new TM friends as I met them. Soon I had people requesting to join the group. This was in August of 2008.

In the last 9 years we have grown to over 3700 members from all across the world. As the group grew and became very popular I began to see a need to have others in the group to operate as administrators, to help take some of the load off of me when it came to adding new members that have requested to join, to answer questions and to provide information to those seeking out answers. So running that group has become nearly a full time job in itself and thanks to my admins, we have an outstanding group that many have said they feel it is the best TM support group on the internet. That’s enough to make a person feel pretty good at what they’ve accomplished.

Between doing my woodcarvings, making Cigar Box Guitars and running my TM Folks group, I stay pretty busy at home, allowing me the opportunity to “take a day off” if needed, if I am having a bad day and to essentially work when I want to, although things are busy enough, that I do have to stay pretty involved in day to day activities but I can rely on my admins to pick up the slack if need be. I thought I was done for when I first realized that I wasn’t going to be able to “work” any longer because I had no clue what I was going to do. I was making myself and my wife crazy with the thought that I’d be this stagnant rock just couch surfing constantly.

Thankfully I was open minded enough to look at options that allowed me to use my mind and also use some of my hand skills and have become pretty successful with my canes and my TM Folks group. Here are a few pictures of my canes, wood spirit carvings, Cigar Box Guitars and a couple of other little things...

Till Next Time......

Another year has passed me by..........

Yep, another year has gone by without any updating to my blog. I've been lazy, depressed, disinterested, trying to remember past occurrences have been fruitless, and so on and so on...... All excuses, I know. Well, one of the members in my Facebook TM Folks group has initiated a new Facebook page and is creating a business out of this idea......where she is going to post blogs from people that are disabled and have become entrepreneurs in one way or another. She wants to show the world that there is much hope for those of us that are disabled and we still have good creative minds and the desire to have worth. Her Facebook page is called Sick Biz and the url for the website is https://www.facebook.com/groups/297981344005974. I am excited about all of this because it gives me an added kick in the butt to not only keep my blog updated but it also gives me that needed drive to do some more work on my carvings and some of the other assorted odds and ends that I've played around with. I suppose it would be a good idea to post up a little bit of info on how TM has been treating me over the last year.... I'll try to remember a few bits anyway.. One thing for sure has been my feet. The Plantar Fasciitis really sucks. Just the simple process of going into my bathroom at night to take a shower and taking off my slippers and walking on the linoleum floor in bare feet is absolutely excruciating. We have a fairly thick, padded tub mat inside the tub, so that's not too terrible but once I get out and stand on that hard floor it hurts like an SOB. I have been so thankful for the Orthotist at the VA for once again having a new, better set of custom orthotic inserts made for my sneakers. Those are the only things that allow me to be able to walk at all. Prior to this new set of inserts, my old ones were getting pretty wore out and my sneakers were also getting some wear and tear. When I would go outside to walk my dog, it hurt so bad. It's a pain that leaves me almost speechless, it's so bad. So thankfully the VA has been there for me. I am authorized to get a new pair of shoes and a new set of orthotic inserts once a year. Depression....... Oh man the depression. I have been so depressed over the last year....mostly because of the family dynamics that my wife and I are subjected to. Without going into any details, all I'll say is that things really suck. If we could pack up and move today, we'd be gone in a flash. Add all of that to me dealing with my TM symptoms and also still continually beating myself up for not being able to do the things that I used to be able to do prior to my TM onset, I've been friggen miserable. Been seeing mental health at the VA also....seeing the psychologist there and he has me on some anti-depressants. He initially wanted to put me on those because he said that they should help me to sleep. ....HAH... When are these doctors going to understand that I don't have a problem going to sleep, it's the deep leg aches that I get that wake me up after about 3 hours of being asleep. The problem is that I pretty much lie in one position when sleeping and my legs don't move around much. Because of the inactivity, the aches start to set in. I've discovered that once I'm up and moving about a little, the aches dissipate. So it all has to do with me lying still in one position when I go to sleep. I go to bed and put some noise canceling ear buds in and I listen to some of my favorite music on low volume. I discovered a few years ago that doing that helped me to not have the frightening nightmares that I used to have. I think that the music helps my mind redirect itself and not go into that mode of thinking about all of the frightening thoughts that I used to have. I also figured that those ear buds, being noise canceling, would help me to sleep because I wouldn't hear any outside noise. Well, the earbuds and the music have done their task, but now I have to figure out something that will help the aches in my legs. I am holding out hope that medical marijuana will do the job, but good old Ohio is taking their sweet time with the program and it won't be up and running until at least September 2018...... So otherwise......all is status quo. I'm just glad and fortunate that I wake up each day. I'll say that much. Probably the very last thing to address this time around..... Each year on the anniversary date of my onset of TM (May 14) I've made myself a new cane sort of as a tribute to how far I've progressed since my initial onset when I was pretty much paralyzed from the waist down. I spent about a year in outpatient physical therapy and through all of that I made it to where I could walk (if you want to call it that) with a cane. The only year I didn't make a new cane was for my sixth year. That's because the depression was bad that year. I didn't feel like doing anything. This year was pretty close to the same thing but I forced myself to make a new cane in hopes that it would regenerate me and give me back that feeling of what it's like to make something with my own two hands. The cane wasn't done on time but I did manage to finish it at the beginning of June. I'm pretty happy with how this one came out and I really did kind of give myself a kick start to want to continue my carvings...... The last thing..... I've ended all of my blog posts with a tune that I've liked..... This one here...from 1975. The band is Ambrosia with their song "Holdin' On To Yesterday"....I thought that it was kind of fitting because even after 9 years of having TM....I still like to hold on to the memories of my pre-TM days.... Till Next Time......

A good follow up appointment with my podiatrist

Bit of good news today..... Over the past few years I have been working with the Podiatry department of my local VA facility to try and get some good shoes and custom orthotics developed so that I can have as normal of a gait as possible.... After my TM onset, I lost all muscle strength in my lower legs and my ankles also had no strength so when I walked, my feet and ankles would bend in and I would walk on the inside of my feet... I also became a heel walker and all of my weight was placed on my heels.... Because of all of this I eventually developed Plantars Fasciitis and that made it excruciatingly painful for me to step on any sort of slightly hard surface if I was in my bare feet. I started seeing the podiatrist at the VA...she is a specialist with the types of problems I have... My first thing was that I needed a good pair of athletic type shoes that had some decent tread on them...... My very first pair were like walking shoes and had very flat bottoms on them and during the winter I could barely walk because I would slide all over and I fell a few times because of that. So, shoes with some tread helped there... Then they worked on some inserts to help cushion my heels...after about three different types of inserts they decided to make custom molds of the bottoms of my feet and they made me some custom inserts.. Those worked for awhile....a couple of years actually, and during one of my appointments they noticed that my walk pattern was terrible... The entire inside part of my soles was wore away and the outer part was hardly touched.... So, new custom molds were taken of my feet.....and new inserts were made... When I got the inserts I was looking at them.... These suckers were high tech....made out of some serious rubber type material but with these silicone inserts in a couple of places.... They were made to help correct the way my feet and ankles would bend in when I walked.... Well, today I had a follow up appointment. It's been 6 months since I got the newest shoes and inserts.... and my podiatrist was extremely happy.... My pressure pattern on the inserts was perfect and the wear pattern on the bottom of my shoes was also perfect... I had a couple of spots where the inserts were rubbing callouses on my feet so she took some stick on teflon pads in the areas where my feet rub and she said that those should take care of the rubbing. I honestly don't notice a difference that I remember, with the way I used to walk prior to these new inserts but my podiatrist assured me that if they hadn't figured this out, I would have continued to get worse and worse and it would have caused much more problems down the line with trying to walk. I still have occasional problems with the Plantars Fasciitis and that's not gonna go away but at least now, these inserts make a little less painful to walk when the PF is acting up.... I still walk like a gimp with my cane, but at least this gimp walks flat on my feet now.... :-) A little video to close with.... Till Next Time......