Wednesday, May 14, 2014

Six year anniversary

Well, It's been almost 3 months since my last post, but I had to make a post today... Today is my six year anniversary of my onset of Transverse Myelitis. As of the time I am writing this right now (it's 10:00am) I was in the trauma unit at Hamot hospital in Erie, PA. At 1:00am this morning I awoke with what I thought was a bad leg cramp and I got up and tried to walk it off like you would normally do if you had a cramp.. but...it wouldn't go away. It continually got worse and worse.. My wife woke up...she woke up my mom and they called the paramedics.. By the time the paramedics got to the house I was pretty much paralyzed from the waist down. Between all of the pain and spams I was having, I could have sworn I was dying... I have never in my life felt the kind of pain I was having... Until you've had neurological pain, you don't know what pain is.... When your neuro system gets out of whack, it is a SOB... You're neurological system is something that is very fragile and when your nerves are involved, it hurts like nothing you'll ever know until it happens to you.. I hope it never does though...I wouldn't wish that pain on anyone... I would never wish TM on anyone...It's a roller coaster ride that is no fun at all...Physically and mentally... Sometimes the mental part of it is about as bad as the physical part of it... I'll vouch for that because I was seeing a counselor for a good while trying to work through the mental aspect of this..and the VA actually has me diagnosed with some type of traumatic disorder because of nightmares that I've had since the onset of my TM.. I've tried to take the negative side of all of this and make a positive out of this though.. I've had a support group on Facebook that I started a few months after my onset...I'm currently just shy of 2000 members... I also help run a resource and info website with another TM buddy of mine...We started that site in October 2008...and it's at about 1500 members.... People from all over the U.S. and other parts of the world.. I managed to write a book in 2011. A book of stories from 20 people from all over the world, that have TM.. It seems that when TM struck me I developed the motivation and desire to try and help others as much as I could...It's almost like I was meant to be doing the things that I'm doing... I help people in other states put together some documents that they can submit to their state legislators and work on getting a TM Awareness Day in their state...and so far we've got 13 states on board.. It's a dent. It seems that as time goes by, that TM gets more and more prevalent... I don't know why that is....unless it's just that there are more people that have had TM for awhile and are just now looking to places like Facebook for support groups... I know that to be a fact because many of the folks that have joined my group have had TM for a good number of years.. Also, it seems that there are people that are getting an actual diagnosis of TM instead of sitting in limbo because their doctors didn't know what they had... I've talked to may people that it took months and even years to get a diagnosis... Such a shame to go all that time without knowing what is wrong with you... It seems that technology has advanced now to the point that doctors are more able to make a diagnosis than they were previously. Well...I guess this will cover this entry in my blog this time... I'm trying not to dwell on the fact that today is another milestone anniversary... I still hobble along like I did 3 or 4 years ago...and I still have pain each and every day...it burns like a sunnabitch... Gripe, gripe, moan, moan.....I could go on and on..but I'll spare you. Now to finish off the post....a bit of music for you... Something from days gone past... A long lost song that was a hit in 1969... One of those tunes that brings back summer memories of days gone past.. A band by the name of Mercy....with their song...Love (Can Make You Happy) Till Next Time......