Tuesday, December 10, 2013

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.....

Monday, December 9, 2013

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......