Tuesday, August 16, 2011

Middle of August

It's the middle of August....the hottest part of the year...
We've had some days in July that were truly brutal as far as the heat is concerned...Temps way over 90 for days in a row....and humidity and weather changes (storms) to go right along with it....
Aaaarrrggghhhh...
It was certainly giving me fits....the old legs were not my friends at all....aches, pain, cramps...etc..
But you know....I just kept at it....I try so hard to not let any of that get to me...Most days you wouldn't be able to tell if I was having a bad day or not...in the words of the old Rod Stewart song..."You Wear It Well"
I guess I have to attribute the majority of this to the fact that I keep my mind busy as much as I can....
I try to stay somewhat active....not near as much as I used to be....but I keep my mind going and that certainly helps me to not focus on the "issues at hand"
My last doc appointment at the Gastro doc....I discovered that I've now gained about 20 lbs. since my last visit three months ago....WHOA..!!
So...I have been extremely conscience of what I'm eating and I also found out, that the local YMCA has a program for physically challenged people...where they can go in and have use of the pool and there is an exercise program and this is all offered for free.
So, my wife and I are going to start in that program right after Labor day http://www.blogger.com/img/blank.gify when they start it back up again.

But now with all that aside....As I said, I keep my mind busy and things have been very busy as of late....keeping active in my TM activism....We've been working in trying to get National TM Awareness Day legislation passed...and that has been a challenge so far...but we keep on.
Also, been working on all the things I needed to do to get the book published...and I just got a note the other day from the publisher that it will probably take about 6 months to get it in print....So, we wait for that...
Once it is published, I and many others that I know are going to be pushing this book...

We now have the International Disability Coalition website all revamped..
so I can now make any changes or anything at all, immediately....This makes things much nicer now...
I have been working on getting the IDC website cross linked with quite a few other sites....
I've been talking with Greg Sapp at the TM Network website...which is the one that I helped co-found....and we've decided to basically associate both sites together....and work as a team with various things....and one of them is that I've been trying to locate someone to use as a spokesperson for both of the groups...
I do have someone in mind and I'm supposed to talk to them in the next couple of days...so we'll see how that goes.

My carvings have slowed down a bit lately...but that's only because of all the other things that I've been working on....
I've made myself a personal commitment to get back on my carvings and try to get a few made up and post them on one of the online websites, to sell.

I did get a pretty cool little bit of news lately...some good friends of my wife and I...I made the husband a walking stick and the wife, a birdhouse with one of my spirit carvings on the top of it.....and they just told me recently, that they hung the birdhouse out in their yard in a tree and a bird actually took up residence in it...and now has babies..
I just thought that was pretty cool...

Anyway, TM wise....status quo.. Good days, bad days...what more is there to say...I've said it all over and over in the past...
Probably one of the things that bothers me the most now....I mean after all, I've gotten over all the mental problems I was having with me not being to do all the things I used to be able to...and am now channeling to the things that I can do....
but I still sleep like crap.
I can take a pain pill right before bed...I've even tried taking a valium right before bed.....and I still wake up so early (usually about 3 or 4 am) because my legs are bothering me so bad...they are stiff and achy....
So, I get up and start moving around and working out all the kinks and so on....and usually by noon, they are in operating order..

So...for my music selection today....since I already mentioned Rod Stewart and You Wear It Well....I figured I might as well post that one....


So that's all for now folks.....

Till Next Time......

Saturday, July 30, 2011

30 July 2011

Hello one and all...
Just a quick update today...
I've been working at creating some more TM Awareness...
I have that petition that it started back on July 11th...as of right now, there are 970 names...
I am shooting for 1,000 by tomorrow night because that's when I'm closing the petition..
I'm closing it because I want to get this sent to the Senators...
I have a list of about a dozen people in various states that are also going to submit this petition to their Senators too....
All it's going to take is for one Senator to take notice on this....just one.
It would thrill me to no end if we can get a National Transverse Myelitis Awareness Day passed...
That way, instead of trying to go state by state as we have been....a National Day would give everyone in every state, a day in which we can use to promote our cause...
Not saying that we can't promote it every day...this would just be a formal day recognized by the gov't.

I'm also in the process of getting some things finished off to have a book published...
I am waiting for a couple more permission forms from people that had their stories included in the book...I made the book a culmination of stories from 20 different people around the world...
There have been the "I have Transverse Myelitis" books done already....4 or 5 of them that I know of....and I didn't want this book to be about "me"...so we decided to make a compilation of stories...
I was also fortunate enough to have a story from a retired NFL football player...He used to play on the Dallas Cowboys and was on the team when the Cowboys won Superbowl XII...so he has a Superbowl ring...
I felt that, that might help the book and bring more attention to it...with someone fairly noteworthy in the book...
I have a real good feeling about this...it may not hit the best seller list, but I think it will get a good response..

Otherwise....I've been doing okay...basically status quo..
I had my pain meds changed from MS Contin to Oxycontin....My body was so used to the MS Contin that it really wasn't doing much anymore...
Now...I have a very high threshold for pain, but there were days that were not fun at all...
So...I got the meds changed...and now this stuff is helping some....but not too the point I thought it should...but I'll stick it out...and keep on smiling.. :-)
I really don't like to have to switch meds again and I don't want to go to anything any stronger....
All I can say...is that fortunately the warmer weather has been a bit of a help with the pain....but who knows what winter will bring again...

For my music post.....I'm going to post some Joe Vitale Jr.
My wife and I had the pleasure of meeting him and his rock star dad a few weeks back...
Joe Vitale Sr. has been the drummer for such notable bands like Joe Walsh, The Eagles, Crosby, Stills and Nash and now for the reformed Buffalo Springfield...
Joe lives right here in Canton....and Joe Jr. is a good musician in his own right....
I sent him a note awhile back after seeing one of his videos in which he used a walking stick....and I thought to myself...The walking sticks that I make would have really fit the theme of the video...so, I sent him a note and offered to give him one of my walking sticks...
So, he and I arranged a time and a place to meet for me to give him the walking stick...
Well, my wife and I were sitting at an outside table and here comes Joe Jr. with his dad, Joe Sr. with him...
Needless to say...Liz and I were thrilled...I have been a fan of Joe Sr. for years...
We sat and chatted for about an hour and those guys were two of the most humble, down to earth guys I've ever met....
He loved my walking stick and to show his appreciation, he sent me a signed copy of his latest CD....
What great people they are...!!!
Anyway....that's my story....
Here's Joe Jr's video...


Till Next Time......

Monday, July 11, 2011

Sign Petition for a National Transverse Myelitis Awareness Day