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......

Friday September 13th

Yep, It's Friday the 13th.... The day that people are so superstitious over..... Me....I could care less, to me it's just another day on the calendar. So, it's been awhile since I posted....as usual.. I have been getting so slack on posting lately... -Boredom? -Nothing to post about? -Don't feel like posting? -So much time passes that I start to forget things that have happened? -Etc? -All of the above... LOL So, let me back up to July.....I really can't think of too much to post about, other than the fact that in July, it was so blasted hot and humid that I was miserable. Truly miserable.. My internal thermostat was so out of whack....and my head was almost constantly sweating... I don't know if it was the heat or what...but during July I had two of my nightmares that I get...One at the beginning of the month, and one towards the end of the month... Those nightmares are downright brutal....scarey.....absolutely beyond description... and they happen so early in the morning...between 1 and 2am. Once one of them wakes me up, I end up getting up because I can't go back to sleep.. and speaking of sleep....It seems that I've forgotten what sleep is...It's one vicious cycle..I end up going to bed by usually 10pm because I'm so tired out and I'm back awake by 2 to 3am... I wake up because of the aching in my legs....They ache so bad that I wake up and can barely walk for a good long time. I get up, take a pain pill and go downstairs with the dogs and usually take them outside for a short walk to try and loosen my legs up... Make up a cup of coffee and then on the couch to watch some TV and stretch my legs..... That is my routine, each and every day....7 days a week, 52 weeks a year.. I did have a glitch in my routing in July..It started the evening of July 4th actually....I started out having one of my "episodes" that I used to get....feeling rotten and then the diarrhea started.....That ran for 6 days.. I could barely eat anything, I drank what I could to try and stay hydrated...Otherwise, anything that want in, came right back out..I ended up losing about 25 lbs. Thank goodness that's the only one I've had like that in a couple of years....I used to get them like that once a month. In August....well, pretty much the same...I had a nightmare near the end of the month.... I had an appointment at my neuro....we went over the same basic stuff.... Only good thing is that nothing has changed for the worse. Still dealing with the pain as always...Some days better than others but not one day goes by that the pain isn't there... On an average day, my pain level is about a 5.....on a bad day, 7 to 8. It's no damn fun......not at all. I also had an appointment at the VA with my doc there...She is a new doc, My old doc left. So, I had to educate a new doc to all of my glitches and symptoms... One interesting thing that came out of my meeting with her, is that she explained to me, that on the VA HealthVet website, I can go into it and access all of the info that they have in my records... I found that interesting so when I got home, I started doing some digging...and they have Insomnia, Arthritis (which I am well aware of...my left hip is an SOB sometimes), Degeneration of Invertabral Disc (which I also knew about..I have a bad disc in my lower spine), Nightmares, Inorganic Mental Disorders associated with Axis III physical disorders or conditions (which basically means *Other specified mental disorders due to known physiological condition* which boils down to, my having some mental issues from the traumatic onset of my Transverse Myelitis), Knee: Arthralgia which means joint pain stemming from an injury (which I attribute to my years as a maintenance guy in the US Air Force), and then of course they have the Transverse Myelitis listed... .........So, reading all of this makes me feel like an old man....I knew I had my aches and pains and so on....but to see it all on paper.....It wasn't very comforting. ............ As I'm laying here typing this....my legs keep cramping up....I just hope that one of these cramps doesn't get to the point where I am in tears from the pain.. These cramps.....the only way to describe....is if you've ever had a charley horse.....imagine one of those times 10.. The cramps are nasty wicked....I usually take one valium a night to help stave off these cramps....but the cramps still come on and when they do, I have to take another valium to try and get the cramps to relax... There's times it takes 15 minutes for the cramp to finally go away..... ............... So....anyway, I guess this brings us up to this month...September... September started out pretty cool.... I run the Transverse Myelitis support group on Facebook, and we have some really great folks on there... One of them, DeDe coordinated a get together on this past Sunday the 8th. It turns out that 8 of us showed up.....One of our members, Trevor, caught the AMTRAK train from the Buffalo New York area and came all the way out here to Sandusky Ohio, just for this get together and to meet some others that have TM... We had a really great time...

.......On another good note....I got a call from Paul Tobin who is the President of the United Spinal Association. He offered to write a letter of recommendation for me, to submit a package of info I've put together, to forward to some Senators to work on getting a National Transverse Myelitis Awareness Day bill passed through the Senate. I've been in contact with Alexandra at United Spinal (she is the VP of Government Relations) and she offered some edits and changes to the info I sent her to review....So I made all the appropriate changes and she is going to finish off the documents and then we are submitting everything to Senator Portman who is our Senator here in Ohio, to see if he will sponsor the bill, and also send it to Senator John McCain because he is the most senior Senator and also very active in disability programs, and we are also looking at getting Senator Ayotte who is the Senator for NH. We would like to have her be a co-sponsor because she is working on a situation with a paralympic swimmer, Victoria Arlen (who also has TM), who was banned from the 2013 paralympics basically because she isn't disabled enough.....after being in a wheel chair for 7 years.... So Senator Ayotte is very interested in TM right now.... I'm keeping my fingers crossed that we can get this done....I've been working on this for close to two years... Something that will give you a chuckle.... We have *adopted* a Pug dog named Loca that lives in the UK, as our mascot on our TM support group....Loca has a brain issue that causes her to not be able to run and she also walks very off kilter... When we saw her, it reminded us so much of so many of us and how we walk, that we wrote to Loca and asked if she would become our mascot.... Loca agreed.. Loca posts an update every day, which they are usually hilarious, and Loca has also made some videos.... Here is one that you can see what we're talking about.... Loca, The Pug that couldn't run.... Last but not least....My music post.... A song made famous by The Eagles.....but written in 1969 by Steve Young... One of The Eagles best tunes......Seven Bridges Road... Enjoy... Till Next Time......