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......

July 16th 2013

Well, again it's been about two months since I've updated this blog... Can't say why the lack of updating......I suppose just because so much of this is the same old thing....over and over again... Let me do this though...I'll back up to June. June 16th - 19th to be more specific.. About a month prior to that date, I had gotten an email from the North Ohio chapter president of the United Spinal Association asking me if I would be interested in attending the "Roll On Capitol Hill 2013" this year. It meant traveling to Washington DC and making visits to the offices of our specific Congressman and Senators offices to speak to them or their assistant to try and get them to support some bills that are in legislation, that have to do with various aspects of disabled folks... So.....I did go. I got to meet some amazing people there that were there as representatives of their respective states... We learned about these bills that are in legislation and then on one of the days, we traveled around from the Senate side of the house, to the Congressional side.....so that we could hit the offices of each of our legislators. I have to say, that I truly enjoyed myself...The traveling around in the wheelchair was pretty strenuous...I can't even begin to say how many miles we must have put on, but it had to be a few for sure. I had the opportunity to meet up with the two other reps that were there from Ohio...Ernie was from the Toledo area and Herb was from the Cleveland area.. Both a couple of really great guys and we have even been staying in touch since that event. I honestly believe that the Roll On Capitol Hill was an extremely worthwhile cause and the trip was such a good time. I am definitely planning on making this trip again next year. Since that event, I have been in contact with the folks at the United Spinal Association to see if I can get their support in helping guide me to get in contact with the right legislators also, to try and work on getting a National Transverse Myelitis Day proclamation in front of the Senate and see if I can get it passed. I have been working diligently with TM folks in various states around the US to get a TM Awareness Day passed in their state and we have been very successful in doing that....but, to continue on at the pace we have been going, it would take forever to get all the states on board. So, ultimately if we can get a National TM Awareness Day passed, it would provide each state with the solidarity of having all the other states on the same day, and it would hold much more weight when trying to get media attention to have the media help us spread the awareness. As it is now, a couple of the states that have a TM Awareness Day, they had gotten the day passed so out of sequence from the other states, that it kind of puts them as an outcast from all the other states instead of having them included...because all of the other states are either June 3rd, 6th or 9th. Having them set up like that gives us all the same approximate time frame and it's very cool to have all of these states involved with doing some kind of awareness programs on roughly the same time frame... If we can get the National TM Awareness Day, it would give all 50 states the same day for us to spread our awareness.... We could have National TM Awareness rallies and all sorts of other things.... So.....with that out of the way....I move on to the rest of June and now July... Our TM Network website and the Facebook group, Transverse Myelitis Folks, has been blowing up like crazy.... I have on average, about 6 to 12 people join the TM Network weekly, and on the Facebook group....we have at least a few new members each week... It sure seems like there are a lot more TMr's out there than what the statistics have told us...It's either that or it's folks that have had TM for a long time and they are just now starting to reach out.. I do know that's the case in some of the people......They have had TM for years....10, 20, 30 years or more....and the are just now really getting into using the internet to research things and are finding the websites... Either way, I'm glad that these people are finding us....It tells me that people are looking for support, information and just in general, someone to talk with. In so many cases, the folks have had TM and have never had anyone else with TM to talk to.... We've developed a contact sheet showing where people are located and it turns out in some cases, that some of these folks are in each others back yards so to speak....and some of the folks are getting together to meet for the first time. Here in Ohio we have a fairly large batch of TMr's and many of them are within an hour from where I live... In September we are planning a get together with a group of them, up in the Cleveland area. I have met some of the others from my area right here in Stark county but it will be nice to meet up with a group of us. I have to say that working this TM advocacy has really turned into something that I have become very passionate about....and I enjoy it so much. Our Facebook group is full of so many amazing people and it's turned into one large extended family.... Some of the folks on there have really come to be like Aunt's, Uncles, Brothers, Sisters and so on... We get to know so much about each other that it's like they really are part of the family.... There is not one person in the group that doesn't mean something to me......They have made this group what it is...and it's one great place. I work and work to try and find the best and most up to date info that I can and we have developed a "Files" section that has so much info that is pertinent to TM and some of the other neuro disorders...(NMO, LETM, ADEM and so on) and I have even gone over to a couple of the Guillain-Barre groups and joined them because much of what they go through with their symptoms is identical to ours that I feel that we can both learn from each other. I'm always looking for new ways to take our group that one extra step.... So.....with all that being said... Just a little about what's up with me lately... Starting back on the evening of the 4th of July....I started in with getting sick....It was much like my old episodes that I used to get....with the diarrhea and all the other stuff.... This time it didn't get as bad overall as they used to, except that the diarrhea just didn't want to go away... I didn't feel like eating anything at all, and I drank enough fluids to keep the dehydration at bay, but with anything I drank, I was back in the bathroom again... This went on for well over a week.....and I ended up losing 20 pounds or so... Towards the end, I was so weak that it was an effort to take the pup outside for a walk in the morning.... Slowly things started getting better and then finally this past Wednesday the 17th, I actually felt back to normal. I've gained back a few of the pounds that I lost. I had a doctors appointment yesterday as a follow up on my Vitamin D and my Testosterone levels had been low...So, she drew some blood and I should have the results by the end of next week... We'll see how things look....I've been on extra Vitamin D and also on Testosterone replacement.. One other thing, is that my blood pressure is back down to where it's supposed to be...It was running really high for a few months and I was getting extremely concerned about it.... I don't know if it's the blood pressure meds that I'm on or the fact that I've dropped so much weight, that has brought my blood pressure level back down, but I'm glad it's down either way... As far as the TM goes.... Things have been pretty damn miserable....We had a streak of weather where it rained for 16 days straight....and I was in friggen pain like a son of a gun.... Now, the rain has quit but it's been in the mid 90's and the humidity has been ridiculous..... So, that has me overheating when I go outside....and I get so weak and the legs are like rubber... I had been hoping that this summer I would get some relief from the pain, especially after this past winter....but with the way the weather has been.......NOOOOOOOO This has pretty much sucked so far....This has been a SOB of a summer... So anyway folks....I'm closing for now... and again, I'll say this..I'll try to post more often and post up things that are more pertinent.... But for now.....gotta run...Got things to see, places to go and people to do.. or something like that.. :-) For my music post this time......something from the great songwriter Fred Neil... Here's a beautiful song he wrote that the also great Harry Nilsson took and made a hit out of.... I loved Harry's version, but I have a special place for the original.... I hope you enjoy.... Till Next Time......