August 20th 2014.....3 months since my last post

Yeppers... Back again for another installment of this blog... It's been just over 3 months since my last update... This is going to be a consolidated version of the last 3 months because honestly I can't really remember all of the details of what's happened since then....but suffice to say that it's been a busy 3 months.. I had a colonoscopy done a couple of months ago and the prep for that is miserable as usual...but the thing that sucked is that the prep for it threw me into one of my episodes I get with the diarrhea and vomiting and just all around feeling like hell.. I lost my appetite for many types of foods and was barely eating anything at all...and consequently ended up dropping a bunch of weight... Over the last year and a couple of months I've lost 60lbs.....now, I'll say, I was up to over 211 lbs and I did want to lose some weight but certainly not the way I did... Colonoscopy came back fine fortunately but it took me a couple of weeks to get over the episode I was having... My Gastro doc had me do a bunch of blood work and then I had a CT scan done....During the CT scan, the tech told me that my doc would get my preliminary results later that day....and wouldn't you know, I get a text from my pharmacy the next morning for a prescription that I have ready.. I wondered what was up because I had not ordered anything....I called and I was told that I had two prescriptions called in from my doc....they were for Ulcerative Colitis. :-( So....I had the pleasure of finding out that I have U.C. ....not really what I wanted to hear, but on the other hand, perhaps this is the answer to the episodes I've been having off and on for the last 6 years.. My Gastro doc has also put me on another med too, to compliment the Nexium that I've been taking... This med is for Proctitis which is along the same lines as Ulcerative Colitis.... They are all part of an Irritable Bowel Syndrome.... I've had to change my diet entirely, now taking another med and then my doc also had me do an EGD to see if there was anything he could see in my stomach... Actually he said that it looked pretty good but then at the time, I was not having any problems either, so there was nothing for him to see.. I will say that this now explains why I've felt like crap for so long and had no energy and or incentive to do much of anything.... Since the testing and the new meds I have felt somewhat better...I just have to be diligent with my diet... One thing though, is that I've not really gained back much of an appetite so consequently my weight is staying pretty low... I'm going to close this for now...I have other stuff to update but I really don't feel like writing much else right now... For my music post.... Some good old motown.....The Undisputed Truth with Smiling Faces.. ......Till Next Time.

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......

February 23rd.....5 days until the end of the month

So it's been another couple of months since I posted last... Seems that sometimes it gets harder and harder to keep up with this blog.... As much as I want to keep it updated, I always seem to push it to the back burner and it gets forgotten about. Since my last post....on December 10th....I have had some things happen to update... On January 1st I had the beginnings of one of my old "episodes" I call them "episodes" for lack of anything else to call them....I have no diagnosis on what's causing them (yet) and I just don't know what else to call them.. They start out with me being overly tired and then the diarrhea starts in... At first it's uncontrollable....which isn't the most fun thing in the world...It pretty much sucks.. Hobbling to the bathroom every hour.... Loss of appetite, feeling overall like hell... Typically in the past I would get to the 3rd or 4th day and the diarrhea would start to become controllable which wasn't as bad but still sucked... and then by the end of the week, things were getting back to normal...but by then I was so weak because of not eating... In the past when I would get these "episodes" I would get them once or twice a month and this went on for two years... I was at an appt. with my GI doc one day and was describing these to him and after an EGD and a colonoscopy it turned out that I had excess stomach acid probably brought on by the stress of TM. So doctor put me on Nexium which worked like a charm....I thought all my troubles were over...Between that time and September 2013 I had two small episodes which lasted about three days... No biggie I figured....and then this one that started on Jan 1st hit....The first week went by and nothing was clearing up... My appetite was still gone...Diarrhea was still there although it was now controllable... Second week came and went and all was still the same...Appetite was still gone...I was losing weight pretty bad now... Third week came and went and I was still having issues although it was getting slightly better...At this point I was terribly weak. The diarrhea was still there but not near as bad....I was thinking that things were going to clear up but it still lingered on for a few more days... I ended up back at my GI doc and by then the diarrhea had ended but my appetite was still out of whack... Taste buds were not right....Couldn't handle anything but a bland diet....By now I had lost near 30 lbs.. My doc had all sorts of lab work done to check my pancreas and some other things... Everything came back fine. So, now my doc is sending me back for some more labs....this time to check for zinc levels...He says that if Zinc levels are off they can mess with taste buds and appetite. So I have to set up appt. at the lab and get the blood work done. Otherwise, I am feeling better....appetite is still not right but all else is doing much better... I was really bummed with this last "episode" since it lasted over three weeks... I am not going to live like that....There is something going on that is triggering these things but we have to figure out what it is... Let's see....Another thing I had...was that I got a letter from Social Security saying that I had to have a 5 year review on my case to make sure I was still disabled and qualified to continue receiving benefits... They were going to gather all of medical records from my doctors on things that have occurred over the last 12 months.. That was the last thing I needed was for Social Security to end up denying my claim....As much as I would love to go back to work, there was no way in hell that I could do it...My days are so up and down that I have no idea from one day to the next how I'm going to feel... It depends on the weather, the barometric pressure, my stress level....and so many other things... So, I filled out their big old long questionnaire and sent it back in....and then kind of forgot about things.. Last week I wandered out and got the mail and in it was a letter from Social Security.. My heart sank... I came in the house and sat down on the couch and opened the envelope..... The first sentence reads "That after examining your medical records and your claim, your benefits will continue" I let out a huge sigh of relief.... Otherwise.....I've been fighting the cold weather...We've had an unusually cold winter and also lots more snow... It's been a real pain dealing with all of this... The cold weather just plays havoc with me... My legs ache so bad sometimes... I go to bed by 10pm because I'm so tired out because I am up between 1 and 3 AM.....I wake up because my legs start to ache so bad.. I have to get up, take a pain pill, go downstairs, make some coffee and sit down and while I'm sitting, I stretch my legs and then get up and walk them out some....and usually within an hour or so, the ache has subsided some... This is my routine, each and every morning... I try to catch a bit of a nap in the morning after I've been up for a couple of hours....Sometimes I get an extra hour of sleep....sometimes not. Either way, I am always so tired out.... Not fun at all.... Anyway, I'll close this for now....I don't know what else to get into right now.... I'll try to keep things updated best as I can....I've had this blog going now for nearly 6 years....It's time to keep this going now for good... For my music video....something a little unusual... We all probably remember the band The Yardbirds....and they had the hit For Your Love.. The tune was actually written by Graham Gouldman of the band 10CC who had the hit I'm Not In Love... Here's Graham's version of the tune.... ......Until Next Time......