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......

One more quick thing

I figured that since this blog is seen by folks from all over the world... It might be a good idea to post this here.... Back in September a man named Jim Castle wrote us on our group, TM Folks and requested that we send his mom some cards and little gifts if we could. His mom is in a convalescent home and she has Transverse Myelitis. She also has some other health issues too... She was so grateful of all the cards and gifts she got that she had Jim do a video that they sent to us thanking all of us. It was so sweet.. So, now the holidays are here and it would be nice to brighten up Edna's holidays too... Her address is.. Edna Castle Room 409. Heartland of Marion. Marion, Ohio 43302 or to Jim at his house at. Edna Castle C/O Jim Castle 906 Brookpark Rd. Marion, Ohio 43302 .......Remember the video she sent to us the last time we sent cards and gifts back in September....?? Let's help make Edna's holidays just a little bit nicer..... Let her know that the TM Folks care about her.....

Christmas is right around the corner

Hey Folks.. Well...geez, it's now been almost three months since an update. I wish I didn't put off updating for so long. I end up forgetting much of what's happened over that period of time. Shoot, I forget what happened last week for that matter... LOL Let's start with this...my last update was in September. At the time I was having issues with overheating because it was so hot and humid outside. Now that winter is crawling around the corner, I don't have the overheating issues like I was, although if I do any kind of physical exertion, I end up with a soaked head as usual. I kind of wish it wasn't just my head that sweat, it's really pretty gross. If I sweat over more of my body maybe it wouldn't be so bad. I don't know though. Since September I've had my normal doctors appointments....with my family doc, my gastro doc and the VA. Nothing really mind bending to talk about....they were all just follow up appointments. Although my appointment with my family doc was a follow up for my high blood pressure which I've had the pleasure of developing since my TM onset... Fortunately the meds my doc has me on, are working to control my blood pressure. Last thing I want to happen is to pop from being too pressurized... Otherwise....things are status quo... The cold weather makes me miserable as an SOB....and I'm still having the nightmares. Those come around at least a couple of times a month and they are just plain wicked.. I don't know what brings them on but I wish they would stop, they're no fun at all. I'm still having the leg ache issues....which wake me up between 1 and 3AM every morning. I end up having to get up, I take a pain pill. Go downstairs and stretch my legs for a few minutes. I take the dogs out to go potty and then I make some coffee and putter around the house for a short bit. This helps loosen my legs up and the ache eventually slacks off some. I'll sit down on the couch with my coffee and watch a bit of TV and keep moving my legs around to keep them from stiffening up. This thing they call TM is really a pain in the ass sometimes....No, wait, ....not sometimes. Pretty much all of the time..!! There isn't a day go by that I wish I had my old life back....even though I have adapted to my new self. Adapted in ways regarding being able to do the simple basic things like figuring in that it takes me a few more minutes to get dressed because the legs don't work like they used to, things like getting things out of the top cupboards in the kitchen, things like learning how to sweep the floor in the kitchen, things like learning how to go up and down the steps without toppling over....and so on. One last thing I need to cover... I have had a dream for a couple of years to start a non-profit to benefit my TM brothers and sisters.. since my friend Darlene Robertson, who helps me with the TM advocacy, lost her son in October, we have made getting the non-profit a priority to do in the name of her son Daniel. Daniel was 32 and passed away from complications of TM. He had respiratory failure. So, we are working hard now to get our non-profit set up so that we can help our TM friends. We have some great ideas on a couple of programs that will specifically help our TM brothers and sisters... I just ended up editing my original post because I actually want to keep some of the info under wraps for a bit until we are ready to roll. I can assure all of you that the programs we're going to start are going to be very worthwhile and will draw much interest. I am super excited about getting this going. As I said, this has been a dream of mine for a couple of years, and Darlene Robertson and I have talked about this quite extensively. Expect some really cool things to happen in the next few months... We have a great group of people that will be involved with this so I can see this really going somewhere... It's going to be awesome.!!!! With all that being said.....I'm now making a solemn promise that I will try to update this on a much more regular basis. For now....here's a picture to make you smile...

Our little pup Daisy... and now how about a musical selection to end this post.... Rowan Atkinson (Mr. Bean) and the fantastic Kate Bush with a funny little duet.. Until next time......