Wednesday, December 25, 2013

Merry Christmas to all......and to all a good night.

     It has been a year since I created this blog. During that time many things have changed, yet so many things have remained the same. We are in the same state, still. We still have the same children, although the wife would like to change that by adding more. We no longer have our loyal dog as he finally was able to go in peace to his new heavenly home. We have added a few new critters to the house, most of them are even cute critters. Symptoms have come and gone, though mostly have come. Yet, we remain happy and living life the best way we know how, even with so many different things that try to interfere. 
     Today, as you know, is Christmas day. The kids awoke extra early as they tend to do on this one day of the year. As I tried to sleep in for as long as I could, I began to be covered by Christmas gifts as the children sorted out which gift went to which child. It seems as though my son's gifts were piled upon me, and my daughter's were piled upon my wife. So, this Christmas I was able to remain lying down whilst my kids opened their gifts. Unfortunately, this meant that I was unable to make my usual 7-11 coffee run. Once the gifts were torn from their wrappings, and the floor had a nice layer of paper upon it, I was finally able to escape my bed to see how bad the damage was. My children immediately began picking their favorite toys, which always seem to be the ones that require either batteries or assembly, and requested our immediate assistance to make them operational. This year, that meant putting together their new Nerf machine guns that not only seem to shoot an endless supply of *soft (*extremely flexible, yet hard tipped) darts, but do so at a velocity that could rival the FPS of an M16-A1. This meant that my need for coffee from the store, would also lead to the inevitable "dart death" of me upon my return. 
     To see my children's face as they opened their gifts and the pictures that we were able to take of them posing with them was priceless. It is my favorite day of the year, because no matter how much is wrong with me due to the MS, it is forgotten for the few moments that my kids are in absolute bliss. This is the reason to have children, and one of the reasons that MS will never completely overcome me. As long as I have children smiling and squealing with glee, certain things in my life can be completely ignored. 
     Thankfully this year, I have seen many of my symptoms not necessarily increase in their effect on my daily life, and we have been able to largely control them through the proper balance of medication. The new symptoms that we have welcomed into our life this year are still not severe enough to stop me from trying to enjoy my life with my family and still allow me to do things regularly with them without much effort to accommodate me. What we are truly thankful for is that we have been able to leave my wheelchair in storage for the past 9 months without needing it. This is what I have personally been most thankful for. 
     Unfortunately, we have not been able to close the open book that is my SS disability. That case is still open, and still pending a decision by the SSA. I hear so many stories from people who have been able to get approved the first time, or had a decision within the first few months after filing. I don't seem to have been so lucky, since it has been almost 16 months that I have been waiting, after the first denial I received 7 months ago. Perhaps this upcoming year will be the year that it finally comes to a conclusion and I can stop writing about that chapter of life with MS. 
     I hope that the few people who actually read my blog are reading this now without many major changes in their life. Hopefully, those with MS are not having any further difficulty with their symptom management. Hopefully, everyone is doing well in other aspects of their lives and is looking forward to the new year with optimism. And hopefully, everyone is still able to look at life with a sense of humor and can see the funny where others might see hardships. I hope that I will still be able to write this blog this coming year without making you few readers bored of my meandering thoughts. Although I know that this is not everyone's life, it is something like it... 

Sunday, November 17, 2013

Been a long time

  It seems like forever since I have last made a post. I originally planned to make this a monthly blog and I apologize to anyone who actually reads my blog about the lapse between posts. Let us play a little catch up...
  Today was my youngest daughter's 9th birthday. Eleven days before was my son's 5th birthday. Now all the November birthdays are out of the way, so it is time to prepare for Thanksgiving and then on to Christmas. We had a great birthday party for them last Sunday after church with many of our friends and many children running around the house in every direction. Thankfully, my balance was intact that day and no children were harmed by my random gravity checks. This is of course a good thing as I don't think many of the parents would have understood why their children were flattened by me at a birthday party where there was no alcohol.
  At the end of October my wife violently killed my precious Chrysler 300C when someone ran a red light and T-boned her. I know it isn't her fault, but I will continue to give her hell for it because it just seems like fun for me. Honestly I am glad for 2 things: 1) it wasn't me that was driving, and 2) other than being slightly banged up she is otherwise ok. I can always replace the car (granted, not with a car as nice and AWESOME as that car) but I could never replace her. Also, since she has a life insurance policy, I would have probably been the main suspect in her death. It's always the husband if we learn anything from crime shows and the news media.
  In October I also received my ordination by the church. I know, anyone who knows me is asking themselves how I have not been struck by lightning yet. I run in zig-zag patterns everywhere I go! Seriously though, since retiring from Fire/Rescue I have done many different things, but I have received a calling into the ministry as a Chaplain and have decided to focus mainly on emergency services as a Chaplain for the needs of fire, rescue, and law enforcement. Don't think that I am going to turn this into a religious "preachy" blog. Just because I became a priest doesn't mean that I lost my sense of humor. Even God has a sense of humor, why else would he have created MS, child birth, sex, or the Dallas Cowboys...
  I have also begun doing a lot of photography. I came into a 1977 Minolta and a 1981/82 Minolta lately along with a shitload of accessories and decided that I want actual photos (not just my digital pictures). I know what you are thinking because I hear it all the time: "you mean they still make actual film?" Yes, and I can even gey it developed in 1-hour which is even more amazing! Besides taking pictures of my family and making a couple photo albums and having pictures to put in frames to hang on the wall (which have been very bare in our last few houses), I have focused my photography skills on the fire/rescue department. I recently did 6 rolls of film for the Madison County fire department when they had their open house. I have also gotten several pictures for the City of Charlottesville Fire Department on various calls both fire calls and rescue calls. The Chief and PIO in Charlottesville have posted several of them on the department's Facebook page.
  Surprisingly, I have found that I am able to hold the camera steady for those precious few seconds that I need to snap a picture or two. However, any other time I need my hands to stay still they completely betray me. Even as I type this I have to make a ton of corrections when my fingers hit the wrong letter or another key that a spasm caused me to press. The most annoying is when I hit the delete button instead of the K, L or M letter that I meant to type. They need to make a keyboard for the MSer much like Google, "Did you mean ______?" Of course, with all the mistakes my hands make when I use the keyboard it would probably just ask me if I meant to use a pencil and paper.

  Well, wish I had more humor today but things have been going well without too many mishaps so I really have nothing more to report. Still awaiting my Social Security disability decision, nothing new there. Still a slave to the medications. But still happy to be here and able to type to you about my life...or at least, something like it...

Wednesday, October 9, 2013

New Hobby

  I have a new hobby. I didn't think that I would find something to take up so much of my time that I truly enjoy, but I have. Photography. Strangely enough though not digital photography, but conventional SLR photography with a camera that out-dates me by 2 years. I find that this is yet another thing that I can do that makes me forget about my MS and all that it has brought to the table, and for a few minutes or a few hours I am completely normal again.
  A few weeks ago I was searching Craigslist just to see what interesting items I could find for sale. After all, it is Craigslist, you could probably find a lung for sale on there if you searched long enough. What I found was a 1977 Minolta camera with a crap load of accessories to include 4 lenses. I have not used a SLR camera since the early 1990s, and wasn't even 100% sure that I would be able to locate film in a modern day store, but the deal was so awesome and I was so intrigued that I made the purchase. For once, with a Craiglist purchase, I was not disappointed in the least. I LOVE this camera, and immediately started taking pictures of all that I could. Of course, I did forget how to properly load the film a few times and had some lovely blank rolls developed by my local CVS (thankfully they don't charge for blank rolls).
  Now that I have my trusty camera, several rolls of film at the ready, and the desire to use them all, I have found my new volunteer career that allows me to return to my heart's original passion: the fire service. Due to being retired and the kids being in school during the day, I find that I can listen to the fire radio and when I hear a call go out that I am close to can go to the scene and take photographs of the fire/rescue crews at work. This allows me to be somewhat involved in the fire service again, and my heart has been singing!
  This past Saturday I was sitting in Charlottesville and noticed a lot of smoke coming from across the railroad tracks from where I was. Thinking that perhaps one of the frat houses over that way might have been having a BBQ after the UVA football game, I really didn't think much of it. That is until the smell of burning wires, metal, and rubber touched my nostrils and immediately I turned on the fire radio and grabbed my camera bag out of the trunk of my car. I walked over to the edge of the railroad tracks and could see the first engine company arrive on scene of a vehicle fire. I immediately began snapping pictures. I even deftly changed lenses before the crew could do an action that I would regret missing as they worked to extinguish the fire. I even heard the crowd that was gathered near me mention how fast the newspaper photographer had arrived thinking that I was a professional instead of some cripple who just happens to enjoy taking photographs.
  The next day I went up to my local fire station here in Madison because I was told by the Safety Officer there that they were having an open house on Sunday and that I was more than welcome to come and check it out. I stopped by Wal-Mart and picked up a few more rolls of film, and headed over to the station. It looked as though they had a fairly good crowd, and all their apparatus were proudly outside of the station and on display. I began at the front of the station taking some pics of the old engine that was their main piece. As I moved around the side of the house, I took more pics of their other apparatus both new and old. When I got to the back of the station I was amazed at what I saw. There were different "stations" set up for the kids and adults to see and experience. They had hoses out that the kids could use to feel what it is like to be a nozzleman. They had a pit that they would ignite and let the kids use a real fire extinguisher on. They had a "turnout station" where adults and kids could see and try on the gear that is used in structural and forestry fire fighting operations. They also had a small room built that they put Christmas trees in to demonstrate Christmas tree fires.
  Around this time my wife and kids returned from their weekend church retreat and joined me at the open house. The kids went immediately to the Mule (ATV used in some types of fire operations and forestry fire fighting) that had several "train cars" attached to it. I continued to take pics of all that was going on. I especially liked the little boy who turned the hose on the fire fighter operating the hose station. I got some awesome pics of the kids, including my own, going through the different stations and experiencing what my former career entailed. Then came time for the real action.
  Everyone gathered at the top of the hill for the Christmas tree fire demonstration. As the trees were put into the "room" and an accellerant was added to get the trees to ignite, I began taking shot after shot of the fires progression. I even was allowed to get within feet of the fire since by then the guys there knew who I was and that I could handle myself. I was able to take some amazing pictures of the fire and some of the kids using the hose at the top of the hill to apply some "fog water" on the blaze.
  That evening I took all 6 rolls of film to my CVS for developing. The girl that I often deal with there was amazed at the pictures of the vehicle fire I brought in the day before, and I told her that these would be even more intense. Whilst I waited the 2 hours for them to be developed, I went to a spot that I go to often to get wi-fi access on my laptop and decided to send the pictures of the vehicle fire to the Chief of the City of Charlottesville Fire and Rescue Department. Within 15 minutes of sending them I received a response from him informing me that he sent the pictures onto his PIO (Public Information Officer) so that they could be posted on the department's Facebook site. He also invited me to a personal tour of their newest station that is currently under construction. It felt great to be invited and to receive such great admiration for the pictures that I took of his crew in action.
  I went and retrieved the newest rolls of film from CVS and went home. I didn't even look at the pictures because I wanted to be surprised with my wife when we looked at them together. Once I got home I gave her the bag of pictures and asked her to give me her thoughts on them. I really wanted to know if they turned out as well as I hoped that they had. I soon had my answer, and a complete boost to my curiosity as to whether or not I had "the eye" for photography. A large majority of the pictures came out with amazing results. Some have a blackened top to the picture which I will seek assistance to prevent in the future by having my camera looked at by a professional camera repair shop. I will also attach some of the photos at the end of this blog for you to judge for yourself.
  Today I brought the pictures to on of the Lieutenants at Madison Volunteer Fire Company so that they had copies of all the pictures to do with them as they pleased. They were very happy and even though I have repeatedly turned down their offers to join the department, I was invited to come to the station to "hang out" any time I wish. I have also offered to respond to any service calls they have and take pictures of their crews in action which they said they will gladly accept. They are even going to reprogram my Minitor pager (fire pager that announces dispatch calls and station tones) so that I can hear the calls for the station and respond from home. I basically have my foot back in the fire house door, but in a completely different capacity than ever before and I actually am excited about it.
  MS may have been a career ending disease for me 3 years ago, but today it has allowed me to follow another path that puts me in touch with my former career. To some such a change might feel like a slap in the face, but to me it feels like I am slapping MS in the face by adapting myself to my new situation and making the best out of it. No matter what this life has brought me, I feel as though I have been able to improvise, adapt, and overcome which has always been the motto of the fire service. This may not be exactly the life that I chose, but it is something like it...