May 1st 2012...It's May Day

Well....I know I have been slacking off on my postings lately....and here I am now, doing another post just a couple of weeks since my last one.... What's up with that..? So, the reasons for my post.... Three things...
1. I had a meltdown..
2. I need to post some info from a great lady that I met on my TM Facebook group
3. An update on my Pain doc appointment that I had today...
Let's get to it then... On April 24th...I was outside helping my wife do some yardwork.. She had decided to cut the grass since the weather was fairly decent..So, I went out and tried to help out with the things that I normally do..I pick up the sticks in the yard, I blow the cut grass off of our driveway with our leaf blower and on this particular day, there were a lot of clumps of cut grass in the yard because the grass was wet. I went and got the rake and some yard bags, I was going to rake up the clumps and bag them up...
I had raked a few piles and was getting pretty tired and my legs were acting up some..getting tired and starting to ache... I can't stand it when I can't help out, so even though I was getting tired, I'll be damned if I was going to stop... I was raking up one pile of grass and the next thing I knew, I was on my ass... I went a**holes over elbows and landed on my side... My wife saw it happen and she shut down the lawn mower and came over to check on me... I was okay because the grass is soft.... But... For a long time, I've felt that I've had control of my emotions, my limitations and everything else...and I've felt that I had everything under control.... but yesterday, when I fell.....I lost it... All of my old emotions came flooding right back...all the feelings I used to have about how I was useless and how I am letting my wife down and how I can't even do simple tasks anymore.... I sat there and cried like a damn fool....and my wife would try to talk to me and I just kept yelling at her to shut up.....just leave me alone... I haven't felt that defeated in a long time.... So...after I sat there for a few minutes....she reached out and I grabbed her hands and she pulled me up to standing....and I gathered myself back up...and brushed myself off..... and then I apologized to her for telling her to shut up and leave me alone... I owe more to that woman that I can ever begin to tell....and I felt so bad for saying what I did, to her... So anyway...I went and sat down for a few minutes and gathered my stupid self together....and finally got back enough strength and fortitude to help her finish the yard... Thankfully, we didn't have much left to do... I just can't believe that after all this time....I've felt like I had control of my emotions and my limitations and everything....and then, just like that.....I lost it.....right there in the middle of my front yard... I hope nobody saw... Man.....this TM can still mess with you mentally and emotionally...even after a few years... I just had to post this.....I thought I was beyond all of this stuff... I didn't even get like this a few weeks ago when I fell going into the restaurant.... Geez......crazy stuff.

So that was #1.. #2...I have had a great lady join my TM Folk group on Facebook. Molly Allen is her name...She obviously has TM, but she is a psychologist and has been for 20 years..She tries to focus on the positive aspect of things... She recently started a paper that they publish from her practice...A paper that provides all sorts of various bits of info... She and I got to talking and we had decided that perhaps she could do an article in her paper on some of the things that I have been doing for the TM community..and how modern technology allows persons like us to get the support we need. So I told her that I would post her paper in my blog and also any other sites that I am involved with... Here is a link to Molly's website... http://www.riverparkpsych.com/ Here is a copy of the paper that she did about "Online Support Resources For 'Orphan' Diseases" http://www.riverparkpsych.com/2012/04/on-line-support-resources-for-orphan-diseases-2/
Molly has been an absolute wonderful person to have as a member of the group and we all appreciate her posts and her insight into some of the things relating to TM and how to overcome the negativity of it.

#3 update... I saw my pain doc today...just an update on things.. In the past, we have discussed various options that I could consider as far as helping alleviate the pain... One thing was a Spinal Cord Stimulator....I've researched this and decided that wasn't an option for me...First, I didn't want to have the surgery to have the unit implanted in me...and also, it supposedly replaces the pain with a tingling sensation...Well, personally I have enough strange sensations and tingling going on in my body already that I don't need any more... The next thing he mentioned was biofeedback..I had considered that one...and again, I researched it.... At first, I would have to go to an office that does it...so that they could hook me up to see if it would work...and if it did, I would have to continue to go back on a regular basis...and then at some point, I might be able to get a unit to have at home... Then I got to thinking...that every time I needed some pain relief, I would have to hook myself up to this thing and go through the treatment... Again, not something that I was keen on... So, today we talked about some other options....and the thought of meditation came up...My pain doc told me that meditation has been used in many different types of pain treatment and also for stress... He gave me the name of an author...Herbert Benson...apparently one of the pioneers of meditation therapy for various types of pain and healing... Here is some info from Herbert Benson's websites....info on what his meditation consists of... http://www.relaxationresponse.org/steps/
http://martin-bohn.suite101.com/the-relaxation-response-a103132
To me, this looks like something that I can handle....I'm going to get some books from this author and read up some more on his techniques...and figure out a way to implement this into my daily life...but, if from what I am reading and hearing, this just might be the ticket.. I'll use this in combination with my current meds....and hopefully....hopefully.....this will help with some of the pain issues and maybe even some of the other problems...ie: sleeping, leg cramps and aching.

So there we are....my update for May 1st.. My music post today....is something from the great Levon Helm, who just recently passed away. For those that aren't aware...Levon was the drummer for the legendary group, The Band. Levon was one of those people that was as genuine as could be...he was an incredible soul... Here's a 20 minute video of Levon inspired by his Grammy award winning album.."Dirt Farmer" This video is seriously worth watching.... So.... Till Next Time......

A Day In The Life...

I'm posting again so soon, because I was lucky enough to have an article done in the local paper...
This is something I have been working on for a couple of years....and I finally found the right reporter to get ahold of.
She has created a regular article where she posts the stories of local people that are having to live a life with challenges.
I sent her a note about two months ago, and she sent me a note back asking for more info...in which I sent her the entire story of TM and I.
She then sent me another note with a list of questions, which I promptly filled out and sent back to her....
and within a couple of days, she sent me a note and said to expect to see the article in the coming Sunday edition...(April 15th)
So, April 15th came....and I knew that our paper wouldn't arrive until after 8:00AM, so I went ahead and checked the website for the paper...and sure enough, there was the article.
I was so stoked...

When the paper did come, I went right out and got it...and went to the section that the article was in....and right there, big as day, on the front page of that section....was the article...with a huge picture of my wife and I.
The article came out so excellent....and it made me feel so good that I was able to spread the word about Transverse Myelitis.
I've even had some people here locally, that got ahold of me through Facebook to talk about it...and one woman contacted me because she says she feels like she has something similar but she has seen four neurologists and has gotten three different diagnosis.
She wants to talk to me about TM and get some more info on it because she has an appointment on Friday and is going to inquire to her doctor about the possibility of what she has, being TM.

Here's a link to the article.
http://www.cantonrep.com/newsnow/x1726854387/A-Day-In-The-Life-Kevin-Weilacher


I am pretty proud that we finally got a chance to spread the word a bit, about TM.
Now, I have to work on figuring out something to do for our Transverse Myelitis Awareness Day on June 6th.

Now....for my musical selection for this post....a tune that anyone that grew up in the 70's, is very familiar with.....BUT, this is the original artist...the guy that actually wrote the song...
This isn't the one that had all the radio play....The song was made a hit by Kenny Rogers and the First Edition....and the song is Just Dropped In.
It was written by a songwriter by the name of Mickey Newbury. His version is a little more "folkie" sounding....and it's excellent in it's own right..


I just felt that this song was kind of appropriate considering my dealing with TM.

So...that's all for today....
Till Next Time......

April 11th 2012

It's now been a couple of months since I've posted last.
For some reason, time seems to slip past me faster and faster as each year goes by....
My intent was to be able to update this blog at least once a month, for no other reason that just to pop in and give a quick update and let everyone know that I'm still here.
Well, that obviously hasn't happened over the last few months....I've let other things get in the way of keeping up with my updates...
So, this morning, I was up early....the good old legs were giving me fits....I rolled over and looked at the clock.... 3:00AM.
Amazing how quiet things are at 3:00AM, except for my incessant rolling and thrashing around and fixing the bed covers and trying to get comfortable so I can go back to sleep.
No go. I truly didn't want to wake up my wife, although she probably was awake by the time I decided to get up.
It has gotten to the point that if I can sleep in until 5:00AM, I've slept in. Woohoo.
My last doc appointment we discussed this situation....and he wanted to try me back on Amitriptyline.
I was on that back in the early days and it did nothing for me....
but I figured, at this point, I'm game to try anything. So, for the first week of being on the Amitriptyline, I did "sleep in" I slept in until almost 6:00AM....that was a milestone. The drawback though....I was so friggen groggy and felt like crap the rest of the day, that I was questioning whether it was worth it or not.
Well, now I've been on the Amitriptyline for almost two months....and it typically no longer does anything for me...
Although, some days it does help me sleep in, but again, I am so groggy that I am almost useless the whole day.
I suppose my body has become used to the med and it is no longer as effective as what my doc thought it would be.
So.....I'm back to my waking up early....usually by 4 or 4:30AM....
I get up and take a pain pill....and start walking around the house a bit...
I'll manage to get a cup of coffee made and then I'll take Sophie outside..(fortunately the weather has been decent enough that I can take her out in the morning again)
Sophie and I will mull around the yard and maybe up and down the road a little bit, while I drink my coffee...
and then back in the house we go...and by then, I am spent. I have to sit back down for awhile and find something decent on TV to entertain me for a bit...although sometimes I'll come downstairs to my basement workshop where this computer is and I'll start catching up on things that are going on....
I try to catch up on the members of my Facebook group....I'll make a few posts and read some emails and answer those...
and then it get to about 6:00AM and it's time to get some breakfast...So, I'll usually make a nice warm bowl of oatmeal while watching a bit of news.
By this time I have managed to wake up some....and my legs have finally settled down.
Sooooo...that's how my mornings usually go....

Lately, I have been working on my TM Awareness projects....Over the last few months, I have been able to help some folks in Alabama, Georgia and Washington state, get their TM Awareness Days passed.
We have all been very happy about that....
So, we're all making plans to do something on our respective TM Awareness Day...
Ours here in Ohio is on June 6th...
The other states, it varies from June 3rd, June 6th or June 9th. Except Georgia for some reason...they had theirs in February. I don't know what happened there but at least they have a day passed.
We wanted all the days to be sometime in early June because eventually we are going to go for a National TM Awareness Day...and it will be much easier to do, if all the states that have passed a day, are all in the same close date proximity.
Here is a picture of the card that I have made up for our Ohio TM day....


The cards for the other states look basically the same, except with the name of their state and their TM day listed on it.

One thing that most of us are planning on doing, is having a balloon release..
I did that last year...
We'll get a few balloons and just attach one of these cards on the balloons and then let them fly.
We'll see if we get any response back from anyone....kind of like the note in the bottle sort of thing.

One other thing is that I have been in contact with a reporter at our local newspaper....
They have a reoccurring column that they do...called "A Day In The Life" where they highlight people in the area that are facing challenges in their day to day life, because of some situation or reason.
I think I am going to have my story posted in the paper this Sunday....
I am pretty excited to see it when it comes out....
This gives me a chance to spread the word more about TM...and I also got to promote the International Disability Coalition website.

I'll post that story here once it comes out....so, expect to see something pretty soon...
I hope anyway....the reporter wrote me yesterday and said that the article should be in this Sunday paper.

Anyway, I don't what else to cover this morning....
I could go through all the bitches and complaints about the pain and the other miserable stuff....but...nah.
That's all old hat stuff.....I've bitched and complained enough...
I try to stay positive and keep a positive outlook....I find that it's easier to get through my days and life in general, if I do that.

My carvings have slowed down a bit....I haven't done as many as I had been...
but I just did one for the daughter of a friend of my wife's. The daughter has an auction coming up at school for some kind of fundraiser...so I volunteered to make one of my spirit carvings for her for that auction. I just hope it brings in a little bit of money for her...
Here's a picture of it...


So....I suppose I'll close for now.....I am having brain malfunction now....I'm getting foggy...which is typical.
My cognitive skills are not what they used to be....and I'm always forgetting words for various things....
It's enough to irritate the tar right out of me....right in mid sentence, and I'll go blank.
Oh well....that's another story in itself.

So....with that, we close for this morning..
My music choice for this post....
Some 60's garage rock....The Lemon Drops...with.."I Live In The Springtime"
I figured that's pretty fitting, now that springtime is here...


Till Next Time......