May 14th 2013

Today is my *anniversary* of my TM onset... Five years ago today....at about this time, I was laying in a hospital bed in the trauma unit at Hamot Hospital in Erie,PA. The doctors were trying to figure out what was wrong with me..... I was in so much pain, I couldn't move my legs, I was being poked, prodded, asked question after question.... The one thing that was good out of all of this.....was the fact that my wife and I were in Erie visiting my mom and my wife had a place to stay....and my wife and my mom and her friend Kathy would come to visit with me....and I had a couple of visits from a good friend of mine, Kyle Busch, who passed away last June... I remember so much of all this past history, like it happened yesterday.....Seriously...these memories are burned into my mind....and I doubt that I've ever forget them... This was the most traumatic experience I have ever been through...When my TM onset started, I truly thought I was dying. Thankfully that wasn't the case. So.....five years have now passed.....I'll say this...it's been one crazy roller coaster ride.... Fortunately I have not had any set backs in the past 5 years....but, I really haven't had any progress to speak of either.... I mean sure, I've learned to adapt to things much better.....how to work around my disabilities, but I haven't really regained much strength, my pain levels are still pretty high for the most part, I still have bowel and bladder issues, I still have my overheating issues where my head sweats like a river... and so on and so on.... But....I'm thankful that I'm still alive. In the last couple of months I've had follow up appointments with my doctors and I'm now dealing with high blood pressure....something that I've never ever had a problem with before... So, I'm on a new med for that....I hope and pray that it works...I really don't want any added stresses on top of the other things.... I'm working on losing some weight....I know that weight can have some affect on blood pressure....so, I'm working on that....and now that they warmer weather is here, I'm going to try and walk more.... I don't know for sure that the pace that I'm able to walk at, will provide any assistance with exercise...but it can't hurt. Whatever type of exercise I do, I have to do something that keeps me from overheating....When I overheat, it's one of the most uncomfortable things I go through.....especially because of my head sweating... It's just plain gross..... Anyway, yesterday I was wondering how today was going to go....I've had "anniversary's" in the past, where I've had a real tough time with things and was terribly melancholy...... I was almost afraid that this was going to happen today.... So.....this morning when I got up...(3:00AM) I started my normal routine...I took the dogs out to potty, I came in and made my morning cup of coffee....and then sat down on the couch and started to watch TV.... My "anniversary" started to cross my mind....and I started thinking...."I really don't want to have a downer day today....what good would it do..?" So, I proceeded on with the rest of my day with the thought that there is no reason that I need to be all bummed out... Yesterday evening I made a post in my group, to everyone and let them know that today was my anniversary and that I was hoping that today was going to be a good day.... I got so many great positive posts this morning, back from the members that it really made my day.... So...I have those wonderful folks in my TM Folks group to help pull me through this.... They really are a great bunch.... So....that's about all for now..... For my music post today.....something from the 60's.....a band called The Troggs....with one of their hits..."Love Is All Around" Their vocalist Reg Presley just passed away this past year.... and one more music post too.... Something else from The Troggs...."With A Girl Like You" Have a great day everyone.... ......Till Next Time......

Spring is in the air...????

Well, supposedly it's springtime.... It's warmed up ever so slightly.....instead of being in the low 20's.....it's in the high 20's. We have a winter storm watch in effect starting tonight....supposed to get about 3 inches of snow....or so. I'm pretty sick and tired of this weather.....My pain level has been making me crazy....I have cabin fever....I am frustrated with just about everything.... I have been having my "nightmares" that I used to have a long time ago.....I started out having them and I started going in for therapy and I was on meds......and after about a year, they gradually went away... I haven't had one in close to 2 years I think.....but now they have started back up. Not every night like they used to be....now I get one, about twice a month. I still don't like the fact that they are back, even though they aren't as frequent. I had been going in to my VA doc and my family doc and over the last year or so, my blood pressure has been higher than normal....Now, I know that part of it can be due to the pain....but my blood pressure seems that it's higher than it should be, regardless. So, the last time I went in to my family doc, I spoke to her about it.....We basically came to the conclusion that what I'm going to try to start doing, is to loose some weight. Since my TM onset, I've gained a good 30lbs or more....and I know that's not good for the blood pressure. So.....I am going to start working diligently on losing some weight. I've been wanting to do that anyway. I don't have too many clothes that fit me very well anymore....So...I am going to work on dropping a good 30lbs or more. On top of the blood pressure.....I also had blood work done and over the last year, my testosterone level has dropped significantly. My doc says that a drop in the testosterone level like that can affect a few things....one of them is my blood pressure....and another is my fatigue. I've had no energy lately...and I know that my sleeping habits definitely have an affect on my fatigue and energy...and there isn't much I can do about my sleep habits seeing that those are determined on my TM and how bad my legs ache during the middle of night, which ends up waking me up between 2 and 3 am. It's no fun getting up that early except for the fact, that the house is nice and quiet. No noise from anyone else... I take the dogs out to potty....I make some coffee and take a pain pill....and then settle down on the couch and find something entertaining to watch. The dogs go back to sleep....I drink my coffee.....I usually fall back to sleep for a half an hour or so.... So, anyway I know I can get testosterone injections at the VA....so I will probably be calling them in the next couple of days and see about setting up an appointment to go in and get started on that. I have an appointment with my family doc tomorrow so I'll let her know what I have planned. Otherwise.....I saw my pain neuro in February and we made the decision to switch me back to MS Contin and Vicodin and took me off that Oxycodone. The MS Contin and Vicodin do seem to help a little bit better.....although he did raise the strength of the Vicodin. The pain just drives me nuts sometimes.....It seems that I used to be able to deal with the pain better than I am now...and I don't know if I am just letting wear on me or what...but I get some bad episodes at times... One interesting thing that's happened in the last couple of weeks....is that I got an email from the folks at the United Spinal Association.... I've been a member of them for quite awhile.....they are an organization that works on activism for folks with spinal cord injuries. Each year in June they have what they call....the Roll On Capitol Hill. They bring in member representatives from just about all the states, to Washington D.C. The first day they have keynote speakers that go over some of the programs and so on, that the government is working on, regarding disabled folks... The second day, they tr to arrange each of us members to have some one on one time with our own State Representatives, to talk to them about any things that may be of concern to us. So, this sounds like it might be an interesting venture for me to get involved in.... I am going to hit up my state reps to see about getting them to sponsor a bill to take to the House of Representatives and try to get a National Transverse Myelitis Awareness Day. If we can get a National day passed, we won't have to worry about working on this state by state, like I've been doing it. So.....I guess that's about the majority of things that have been going on..... I'll post again once I start getting the Testosterone shots and also working on loosing the weight..... For my music post this time......Something from The Troggs...They were most known for their hit song "Wild Thing".....but I'm going to post one of their other hits...."Love Is All Around".....this is a tribute to Reg Presley...he was their vocalist and just passed away last month.... Till Next Time......

Well....it's only been about 4 months since I've updated this thing...

Hello, Hello, Hello Everyone... I'll make no excuses as to why I haven't updated...I just haven't. So.....where to start... The last time I updated I had posted that I was making a change to my meds because I had been on the MS Contin and the Vicodone for so long....so, I made a change to Fentanyl Patches and Oxycodone.... I've been on those now for a little more than three months.....and the whole time....I just wasn't feeling right... I felt that they weren't working the way the should...and the weather was starting to get colder because winter was getting ready to set in.... So.....I had an appointment yesterday with my pain doc. We talked quite extensively about the meds he put me on versus my old meds.... and we came to the conclusion that I was going back to my old meds... I started taking them yesterday afternoon.....and I started to feel better almost immediately. I even slept in a little bit this morning.....(When I say sleep in....I meant 4:30am....which is good compared to a normal time of 3:00am. We'll see how tomorrow morning goes... Let's see...what else...oh,last month I had an appointment at the VA to pick up my pedal exerciser that they ordered for me... This is the one they ordered for me... http://www.activeforever.com/p-24956-pedlar-pro-pedal-exerciser.aspx This enables me to work my legs and my arms too.....It has an adjustment on it to increase the tension so I can gradually make it harder for me....to hopefully got to the point where I'm increasing my strength... I don't know what else to post right now..... I do know that I has said I was going to post more often, the last time I posted.....and I sure missed that one.... I'll truly try to make it a priority to post more often.... I have to get in the habit of jotting things down that I want to post about....that way, when it comes time to post....I'll have a list of everything I want to cover..... So.....to post my music posting for this one..... A great old song from the legendary Van Morrison.... A song called ....Days Like This... Thanks so much everyone. Till Next Time......