No post since August...????

It's so hard to post up everything that's happened since August...... I'll try to remember a little bit... Two primary things..... The first....Those episodes I was having....I went to my Gastroenterologist and had a EGD, Colonoscopy and a CT scan done... The result....Ulcerative Colitis. Doc put me on some meds for it and knock on wood, I haven't had any episodes ever since...Biggest issue, is that I am on a restricted diet.... At one point before my doc had diagnosed me, I had lost a bunch of weight...I was down to 150lbs..... I've been able to figure out how to balance my diet out and have gained back to 165...I guess I can live with that... I'd rather be at 165 than I would be at the 211 that I used to be at..... So...we'll give this a couple more months and if things don't get any worse than I think I'll be satisfied that things are under control.... Second thing....this damn cold weather....Seems that this year has been playing hell with my legs more than it has in years past... I have had a hell of a time sleeping.....I try to go to bed every night by 10pm hoping that I'll get to bed early enough to get some sleep.....but practically every night I am awake by between 2 and 3am..... Tonight was different though.....I went to bed by about 9:45......and all I remember is that my legs were hurting...I wasn't getting any good sleep at all....and then I remember my legs just going on fire..... I must have been hollering out because Lizzie was calling my name to wake me up.... I don't remember what time it was but it seems it was about 11:30....I tried to get comfortable and go back to sleep but that was a no go..... I couldn't go back to sleep for anything so I decided to get up and get some leg stretches in, which usually helps some... My last neuro appointment I talked to him about this and he prescribed me some neurontin to see if it would help and I've been on that now for a couple of months and still have gotten no relief from it yet.... I am getting so, so tired of all these damn meds....the pain meds, the neurontin, meds for Ulcerative Colitis..... As each day goes by I am becoming more and more of a proponent of medical marijuana.....All the research I've done shows that it should help with the issues I have with my legs and also it helps folks with ulcerative colitis and other stomach issues... I've been in contact with the Ohio Rights Group which is a group here in Ohio that has organized to work on doing anything and everything they can to try and get medical marijuana on the ballot for a vote in 2016. I spoke with the president of the organization and he has offered me a volunteer spot of things that I can do from home.....so I am anxious to start on that.....I am ready to medical marijuana to me legalized here in Ohio......after all, there are currently 23 other states right now, that have legalized it.....I think it's about Ohio's turn... Well....I'll leave it at that.... I am tired.....and can't think of a whole lot more to chat about.... I'll try to keep better track of things and update this blog more often.... and for my music track......the younger brother of the great Carlos Santana......Jorge Santana and his band from the 70's...Malo and the song Suavecito... ......Till Next Time.......

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......