Friday, July 19, 2013

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......