Saturday, January 7, 2017

     Hello World, I have been thinking about starting to do my blog again. One of the many reasons that I seemed to have stopped other than too few people who actually read what I had to say, was that finding the time and motivation to write were getting difficult and like many things in life, I simply gave up. Ironically, I felt the constant need to articulate the words that were swirling around in my brain yet at the same time was upset that I had no one to say those words to. If I had just put my words to the screen (to paper would be a bit of an antiquated saying), I could have at least gotten them out of my head and freed up some of the tiny space that I have left in here. So. perhaps it is time for me to put down a few words, feelings, and perhaps a little bit of myself for others to read and to know that they are not alone.
     It is officially 2017 now. Trump is soon to be in the White House (has a whole different meaning depending upon who you ask). There have already been terrorist acts committed both upon American soil and afar. And today we got the first snow in the little part of the world that we live in. So, the new year is now official and nothing (other than the snow) has really changed since 2016. Have you?
     I can pretty much say that I am the same asshole that I was on December 31st as I was on January 1st. Part of me hopes that you (my reader) can say the same thing. To think that a simple date change will cause a significant change in a person is absurd. I used to embrace the tradition of "New Year=New Me" and then realized that no matter what significant personal improvements I state I will make on the 31st of December will only last a short time before I revert to my normal ways and cause those in my life some form of disappointment. It is so much less impressive when you continue the path of disappointment without anyone noticing that for a short period of time you were "different" and thus you have now become even more disappointing than you were before you attempted the chance. Due to this, I found that I should just keep things to myself and if there are things in my life that I can change without making a huge deal about doing so, then I will. At least this way, if I am unable to change (usually unwilling is more accurate) then the only person who I have let down would be myself.
     I believe that the biggest change I would make (if I actually wanted to make a change) would have to be the resentment I feel when I see people doing things and not having any difficulty or when I read them complain about something that seems so trivial due to MS involvement in my life. Now, this isn't to say that I would treat the people any different or that I dislike those people who are making the statement, but I feel the....rage (rage would be a good description here) well up inside of me and the desire to just shake the living shit out of people is present. I hear so many people without any type of visible illness or disease complain about something (usually something they have some control over) and yet in my little MS world it seems as such a trivial thing. I keep reminding myself that people are often dealing with situations that one could never imagine unless they have been in that person's shoes. By this I don't mean that they were in the same situation, I mean that they were ACTUALLY that person and all those other extenuating circumstances that would make that issue more difficult to deal with. Such as a person with advanced MS (Primary Progressive, etc) or a physical deficit try to walk up stairs or play with their children when they physically hurt or their body doesn't respond like a person with no physical impairment would. Although a person looking from the outside might not truly understand, a person who experiences these situations would know and feel a sense of disappointment when they are unable to keep up with their loved ones.
     I am standing on a soapbox orating these thoughts and I know that if anyone is reading, they are shaking their head right now. I would be too! I honestly would. I would be saying that perhaps that person should not try to do things that they know they will not really be able to do. Perhaps if they had made different choices in their life they would be able to do more things that they wanted to do or that they see others doing. That perhaps they could do more if they just worked on themselves and got their fat asses up and off the couch or computer (ironic as my over-weight ass types this on my desktop computer) and did some physical activity and puts their eating implement down. These are immediate thoughts that not only come into my mind, but I am sure come into others lives. We as human beings are unable to immediately see a person without some form of internal judgment about that person's situation. If we were, we would see fewer people post photos of rude notes they received whilst in handicapped parking. Just throwing that out there.
     Most of what I am typing here is bullshit. It's bullshit! I am angry. I am constantly angry! I wish I had a definitive reason I could identify and say, "See! This is why! This reason right here!" but I have not been able to figure out an exact reason. Perhaps it is because I am scared. I have not really said that out loud before, and most likely I won't do so again. I am fucking SCARED! More than anything I want someone to wave a magic wand (since I know it will never actually happen) and cure everything that is wrong in my life. Cure this damn MS. Cure this fucking Cancer. Cure the poverty that always seems to rear it's had around the middle of the month. Give me the ability to say YES to all that my kids ask and want. Sometimes they are asking for tangible things that require money and I am unable to do these things for/with them because the money simply isn't there. Other times they want something simple such as being able to play or climb with me and I can't due to my physical impairments. FUCK!
     I am sick. I am sick. I am sick. Those simple words should not be something I have to say, yet I ignore them and pretend that I am fine for everyone else and people close to me seem to forget that I am sick until I blow up at something that they ask or expect me to do. They expect these things because I hide away what's really going on with me and act like everything is fine. One of the biggest things I hide is that I am scared. I am so goddamn scared out of my fucking mind that I don't even know how to say it. No matter what I say, I am scared of dying. Yes, I know, I make jokes all the time about dying and those close to me trying to kill me. The truth is I am scared. There are so many times in my life that I should have died and yet I am still here and to possibly be taken out by something that I can't control at all scares the living shit out of me. I have survived so much, and yet here I am, waiting for the doctors to give me a prognosis about the one thing that I have been terrified of my entire life, cancer. WTF!
     As I typed that word, I had to try to keep from crying. Me. I DON'T cry! Yet, it is all that I have wanted to do lately when I am alone (which is thankfully almost never). This is the reason that I have ignored the symptoms and tumors and pain (when it is there) and the random pains that have no explainable origin and come and go throughout my body. This is why I have ignored them! This is why I have shown resentment towards my wife for making doctors appointments and making sure that I go to them. Making me go to a cancer specialist and asking all the questions that I don't. If I continued to ignore things, I would feel better now because there wouldn't be this limbo of waiting. I would not think about this and nothing else because I am waiting for the results from one test so that I can go to another. Waiting for that test result so that I can have a biopsy and get another set of results. Then wait for those results to discover the stage and progression. To then wait for that in order to discuss a treatment plan. Then to figure out what role the MS will play in that treatment. On top of it all, I then have to figure out who will take care of my children whilst I am going through the treatments whilst my wife is working. Believe it or not, it would kill the family faster than it would kill me by going through treatment than by NOT going through with it. Thus, if I just ignore being sick and pretend that all is well, nothing will really change and everything can continue in the routine that I have tried so hard to establish.
     I just had to come back to finish typing this because I had to take a break to feed one of the twins. Thankfully Kimberlee fed the other twin so that he wouldn't be angry with me feeding only his brother. These are the little things I think about when I think of this disease affecting me. I have to feed them normally alone as my kids are in school, and if I am too sick to do that, who will? I can't be a good father and be sick. I just can't. I realized that with my MS it was going to be a problem, so rather than treat my MS I stopped those treatments 2 years ago so that I could be the type of father that my children deserve. Unfortunately I still lack in that capacity at times. I know that this will be the same way. What comes first? Myself, or my children? Who can truthfully answer that question? After 17 years of being a father, I still can't answer that question mostly due to the fact that I refuse to allow the necessary prerequisite question to even be asked. No reason to ask the question if I refuse to admit their is a problem and thus a basis for such a question.
     I can't focus to write anymore and my brain has become jelly just typing all of the things that have been floating around my head. Thus I will simply end with the statement that this is life.....or something like it.

Wednesday, November 26, 2014

Giving a little Thanks

  There are so many things that one can dislike about MS. Having a lack of energy, constant feeling of being tired, inability to control one's body, and the other multitude of symptoms that can affect us on a daily basis. The one that is really bothering me the most lately is the one that affects you, my readers, more than anything, and that is my laziness when it comes to actually sitting down and writing my next blog entry. It has been close to 3 months since I wrote my last post, yet there have been more than a dozen times where I have had ideas of what to write and failed to motivate myself to sit down and type what was on my mind. However, like every year this is the month of giving thanks for what we have, and as I always do I will write down a few of the things that I am thankful for.
  First and foremost I am thankful for my wife and children. It doesn't matter who you are or what is going on with your life, your family is always going to be the most important resource you have in your life. I know, there are certain exceptions in people's lives, but let's just make this concept a blanket appreciation and like we do when the holidays (or traumatic times) occur, let's only focus on the good. When I was first diagnosed with Multiple Sclerosis, the very first person I discussed it with was my wife. Granted, I had to discuss it with her since she was the reason I sought out a doctor's diagnosis and finally admitted that "something" was not right with my body. She was the one who supported me as we went through the HMO game of "pin the tail on the doctor" that one goes through when they have to find a primary doctor, then a specialist, and then repeated testing. Always good for a few laughs if you are a oddball like me and have a warped sense of humor. The best part about going through all the hoops when we were seeking a diagnosis was that I worked as a professional paramedic at the time and as such only worked 8-15 days a month so I had plenty of time to visit different doctors and specialist and couldn't say I didn't have time for tests, when I tried both my doctor and wife would call me on it and then I had no other choice but to submit.
  Secondly, I would have to be thankful for the true friends. I say true friends and anyone with MS will know EXACTLY what I am talking about. When you are healthy, and not a sociopath like me, you have as many friends as you care to make. They are there for you whenever you need and you tend to do likewise. You will generally make as much time as you can to hang out and spend time together doing anything you can. Sometimes those friends will even allow your significant other to join in the shenanigans. However, when you are diagnosed with any type of chronic illness that is not very well understood by the medical community let alone your extremely non-medical friends, you can pretty much watch many of those friends simply vanish before your eyes. Not only do they not really understand what is going on with you and the "disease," but they are not willing or understanding enough to ask you to specifically explain it to them. This results in fear and confusion on their part as well as yours. Even though I was a part of the largest brotherhood in the world, many of my closest friends in the fire service didn't understand what my diagnosis meant and once I was forced to reveal my illness and retire, many of them seemed to disappear as well. I somewhat understand since in the fire service when someone is diagnosed with a terminal/chronic illness it is usually not too long afterwards that they are planning a funeral service for that person and thus cutting that person out of your life is believed to be saving them from having do deal with your loss. Unfortunately with MS, this disease can keep you alive and going for many many years after initial diagnosis. Now though, you get to go through it with what would most likely be less than half of your initial support group. So, again, I am extremely thankful for my friends that I have currently and you would be as well.
  Thirdly, I am thankful for my health. I will give you a second to gather your composure from the laughing fit that you most likely just entered when you read that. And yes, you read that correctly, I said that I was thankful for my health. Here is why...Besides all the symptoms that I am currently living with, I am still alive and able to type this for you to read. As a matter of fact, you should be thankful as well since you are alive and able to read this which is a big deal when you really think about it. Although every day takes a certain amount of energy to get through and you may not have enough energy to get all your daily goals completed, you are using what you have to live. There are many of us who have given up when given this diagnosis. We are the strong ones who put up with this disease daily and continue to fight and refuse to allow it to dictate how our lives are lived. I will admit that when I was first diagnosed I was ready to completely give into the disease and just give up. As a matter of fact, if you have been reading my blog for while and remember one of the first posts, you will remember when I discussed giving up on life and the different ways in which I had thought to disengage my life from this world. If not, please go back and read it, I promise you it is not depressing and will make you possibly urinate yourself a little which should at least provide a little humor to your day if you haven't had any yet.
  Fourthly, if you are lucky enough to have health insurance (unlike me currently), be thankful for pharmacology. Tomorrow is Thanksgiving and many of us will be spending time with our extended family. As much as you may love your family, we all know how hard it can be to deal with them when you are in perfect health. Unfortunately, with MS most of us tend to move slower and may even require assistance getting into our families house, so we may be stuck dealing with them when we really just want to escape. This is where your thanks for pharmacology comes into play. You have access and most likely have prescriptions to strong medications that could make your experience dealing with your family so much easier to live through. You may even have access to certain prescription medications that could make your body remain there dealing with them but much like the movie Click, your brain is on autopilot. I know, I know, this is not a nice topic to discuss. However, just think about all of those family members of yours who seem to drink A LOT when they are together for the holidays. You know you have at least one! They are engaging in dangerous behavior with a legal drug that has been known to be abused by a large number of the population and your other family members always seem to talk shit about those family members who drink too much. Now, your medications that usually can make alcohol appear as strong as a Tylenol pill are given to you by your doctor to allow you to survive your "perceived deadly disease" and thus you are not taking them to be abusive of drugs, but rather to be able to attend the family event without your disease being in the forefront and who can really blame you for taking them. See, your disease and doctors have given you a reason to be FUBAR at this family event and thus you can't be blamed by your other family members. However, generally if you are taking some really strong medications, it might be a good idea to keep a close eye on those drunk family members because you will probably find them to be so much funnier than anyone else in the house will. This brings me to my last thing to be thankful for...
  Be thankful for anything that can be perceived as being funny! It doesn't matter if society thinks that something is funny or not, because you are the one who needs the laughs, not them. You have to be able to keep your mind from dwelling on this disease. So many of us focus on what we can or can't do, what we used to be able to do, how much longer we will be able to do something, or how many thinks have changed for us since our diagnosis. One must be able to have a distraction, and honestly, humor is probably the greatest distraction because it not only takes your mind off of what is going on with your life, but it is healthy for you to laugh. Laughter is truly the best medicine and I have been using it through my life and career long before I ever found out I was sick. Live, laugh, love. This message seems to be everywhere lately. But, it is so true! If you don't live, laugh, and love, you will be miserable and this disease survives on misery and will completely be able to take over your body if you are not happy. So, live, laugh, and love this Thanksgiving and remember what you should be truly thankful for. After all, those around you may not completely understand what you are going through, and God knows that you don't have the energy to explain it to all of them over and over again. But, remember, it is your life, or at least something like it.

Happy Thanksgiving everyone!

Monday, August 25, 2014

Ferguson Commentary

The media is all abuzz these past few weeks due to the shooting of an unarmed boy in Missouri. It is a terrible thing when any one is killed, and even more so when it is a young person. What makes it such a headline worthy thing is that it is yet another black youth being shot by a white officer, however there is nothing rare about it in the public's eye and the media makes it out to be a common occurrence with completely racial motivation rather than what the real truth is; the "victim" got exactly what he deserved and it was unfortunately a white officer that gave it to him. Here is where many people who could be reading this post would get very angry and possibly wish me harm. Thankfully, very few people actually read my blog.
  Let me begin by explaining a few things about myself and my point of view to you so that you may understand where I am coming from and why my "unpopular" opinion is what it is. This police shooting occurred in Missouri, the Mid-West, and perhaps you are new to the United States, but the Mid-West is a predominantly white part of the country. However, since there are minorities everywhere, the white population that perhaps grew up with more benefits and a chance at a better life than their minority counterparts will have the occasional run in with each other and most times the law side will outgun the criminal element. As I stated a minute ago, the legal element will generally tend to be predominantly white compared to the criminal element, and although people may view this as an unfair balance of power, this is just the way it is. When the criminal element puts the law element in a position of possible danger, the law is going to do what they are trained to do and they are going to "put down" the threat. As a former law enforcement official, I can inform you of two things without a doubt: 1) you make me feel as though I am in immediate danger of life or limb, I am going to kill you, and 2) chances are likely that you and I are going to be different races. I am an Italian man, which is actually not white, and chances are that you are going to be some race that also does not consider themselves white. Personally, I never gave a shit as to whether the "perp" was white, black, yellow, green, blue, or purple with polka dot stripes, if you put me in the perception of danger, I will have absolutely no problem sending you onto the next phase of your metaphysical plane.
  If you are approached by a police officer, cooperate. End of statement. You come and act like you are being harassed, and most likely that interaction will escalate  from something small and easily remedied to something that  could be perceived as harassing or defamatory. I have been reading statement after statement in article after article about how Michael Brown was a regular average teenager who did nothing wrong other than stealing from a store, smoke marijuana, listen to and "sing" hardcore rap lyrics advocating the "thug" lifestyle and violence and that the ONLY reason he was shot and killed was because the officer was racist. Hmmm...Ok, let's evaluate this for a moment shall we.
  I was a teenager once, and unless you are the result of super advanced successful human cloning, you were one once too. This means that you have experienced emotional instability and emotional confusion, acne, clumsiness, the desire and need to fit in, experimentation with many different things including possibly drugs, alcohol, and music, and other personality traits that may or may not have stuck with you and developed as you matured. Did you have any run-ins with law enforcement of any type? Chances are good that at some point during your formative teen years you were in a place at a time when law enforcement may have been called to assist or intervene with some type of behavior that you or someone you were with was doing and thus you were involved in a situation where you had direct or indirect involvement with law enforcement. Now, with that being put out there for you to relive and remember, you obviously survived up to this point in your life and survived being a teenager in The United States of Racism. I am willing to bet my life and the lives of my children that every single person who is alive right now as a fully grown adult is not white. We are not a completely white world and there are currently 313.9million (2012 census figure) people in America alone. It makes me wonder how 313 million people were able to survive through their teens without all of the racist white police officers out there killing them as they walked through this world.
  My hypothesis is fairly simple, and that is that when you had an encounter with the police you did not decide to test your luck and awesome skills by trying to attack or intimidate the police officers you were having an encounter with. I can speak for myself personally and state that the several interactions I had with law enforcement when I was in my teens in no way shape or form resulted in a weapon being drawn on me nor even a remote chance of being shot by said officials. Why you ask? Well, if you listen to or base this fact off of mass media and the Michael Brown and Treyvon Martin families, my survival is SOLELY because I am fraught with WHITE PRIVILEGE. I mean, how else can you explain it? After all, these two people did ABSOLUTELY NOTHING WRONG other than being black and running into law enforcement, right? They were the victims of being teenagers targeted by white racist officers who figured that they would be able to get away with killing young unarmed black teenagers. After all, we all think that we can kill other people and no one will notice, right?
  Plain and simple folks, these two people were killed because they were arrogant, rude, misbehaving, self-entitled, and violent towards others. They made the decision that they could do and have done nothing wrong and were being unfairly targeted because of their skin color/neighborhood/time of day, etc and due to this they decided that they would strike back at those attempting to correct their behavior and didn't account for the fact that they were out gunned and that when a person is in reasonable fear of injury or death they will do whatever is necessary to stay alive. For those people who are in law enforcement, this means that most likely they will use the firearm that they are required to carry whilst they are on duty and this will result in you being shot. Why people don't seem to understand after 100(+) years of police officers being around, and almost as many years of them being armed and trained in self defense, that police officers are trained to kill and not to merely injure. Yet, every single time there is a police shooting, right around the time the race card is pulled, and before the report indicates how many bullets made contact with the "victim," the family/friends/associates of the "victim" scream wanting to know why the officer(s) couldn't have shot the person in the leg. Small thing to consider also, there are major arteries that are throughout the body that can still result in death (slower and often times more painful) if they are hit with a speeding bullet that was fired into the body in a location chosen by the officer to injure rather than kill.
  I know that this entire article will be unpopular with many people, and many others may feel that I am blaming the entire situation of Mr Brown's death on race and thinking that I would not be saying any of this if he were a white teenager. Well, let me assure you that if Mr Brown had been white, yellow, orange, or green, I firmly believe that he got what he had coming to him. You attack a police officer, or make him feel as though impending danger and injury may soon be inflicted upon his/her person by you, you deserve anything that happens to you at the hands of said police officer. If a multi-millionaire white person had been attacking a police officer of ANY race or ethnic origin, I would still stand behind that officer 100% if they used deadly force to neutralize the perceived threat. This is what those who are making the situation in Ferguson, MO out to be a racial powder keg are not even remotely considering. They are people who feel as though they identify with Mr Brown based upon his social status, racial affiliation, ethnic background, religious upbringing, or some other type of absurd connection that they feel they are a part of. They were not there when the incident happened and can not make any logical speech about it to justify either side involved. I am honestly no different. I was not there, and all of my writing here is based on certain facts that are undeniable with inference made based upon the situational facts available to the public. I was not the officer who fired on Mr Brown and obviously I was not Mr Brown and thus I am unable to make any absolute factual statement regarding what transpired between these two people. What I can say I already have within this article and leave you to make a decision about this situation with a little more logic and opinion involved than what I have been reading lately. Hopefully, you will see the reasoning behind my words and not pass them off as just another racist prick who had to put in his two cents. I wrote this merely for the fact that I share no feelings towards any one race over the other, or any demographic group verses another. I just felt the need to say what it seems like others are afraid to say.
  Bottom line, if you behave like a jerk, don't be upset when you get treated like a jerk. Act like a disobedient bad-ass thug, don't be surprised when you get treated like one. Attack someone physically and put them in a position to perceive their life as being in danger, don't be surprised when they kick your ass or worse. If you are not absolutely sure that you can safely win a fight, then perhaps you should be smart enough not to start it in the first place. But, when the other person strikes back and you are left bloodied or worse, don't blame the person's response on anything other than the fact that you gave them no choice but to respond in the manner that they did.

Wednesday, August 20, 2014

Wow, how time flies when you can't remember it.

  I have not written my blog in several months and I feel bad about that. Now it is time to catch everyone up on what has been going on here in my little part of the MS world. To be completely honest, very little. Summer has arrived which means that I have been home with the kids trying to come up with daily activities to keep everyone busy. Unfortunately, as I am still awaiting the SSA to decide if I am too disabled to work and my wife has been working her ass off to keep the roof over our head and food in every one's belly, there is little money left over to arrange activities for the kids and afford the gas to get them there. We have been able to arrange a few things.
  A few months ago I came across a set of golf clubs at the Salvation Army Thrift Store. I grew up in a golfing family even though I was the black sheep (still am) that never really took up the game. Granted, when I was much much younger, my father would take me to the driving range on occasion to hit some balls. Most of these trips were me watching him hit the balls since he has the ability to pretty accurately hit anywhere he wants to with amazing skills whereas I could occasionally hit them to a marking yardage spot. When I got this set of clubs (granted they were woman's clubs) I discovered that my youngest children seemed to show a keen interest in using them and learning the game of golf. This made me swell with happiness as I have recently (past several years) felt the desire to involve myself more and more into the world of recreational golf. The funniest part of this is that golf is very common amongst us in the fire/rescue world. It seems like whenever a firefighter gets ill (cancer) or dies in the line of duty, they get a golf tournament named in their honor. The last one I played in before my retirement was for my friend Z who I worked with in the City of Manassas Fire and Rescue Department. He discovered he was ill in February and was dead by June. Myself and a few of the other Chief's in the area had a large tournament to benefit his family shortly after he passed. To say the absolute least, I played horribly.
 Once I mentioned to my father that the children were becoming interested in learning the game, he made a surprise visit to our house one Sunday (my wife's birthday to be exact) to bring down a set of children's golf clubs for my daughter as I had found a set of children's clubs from the Salvation Army store the weekend before for my son. That same day I found myself a new set of clubs that fit me a lot better than the set I had and these ones were for a male, so now my wife had a set of clubs. Everyone now had their own clubs making things so much easier when it came time to drive balls.
  My father's visit was not merely for him to bring down golf clubs for the kids, but apparently whilst going through his paperwork he found a whole life insurance policy that had been taken out on me when I was 8 years old which would now be worth somewhere between 150-200k dollars. Since he knew that we had the opportunity to purchase a property from our landlord for $50k less than asking price to include a rental property bringing in $600/month with perfect tenants as well as a 5 bedroom house all on 4.5 acres of land, he figured that this policy would be able to provide the capital we needed to finally purchase the house. Unfortunately, he forgot that he had cashed out the policy in 1998 and thus rendering the paperwork that I was holding in my hand completely useless. It's the thought that counts I guess. Unfortunately, we lost the opportunity to purchase the property and are still staying in the tiny little 2 bedroom rental that we have been in for almost 2 years. Not great, but at least it is a home.
  That same weekend that my father came for a visit I also stepped on the door to the deceased rabbit cage that we have been using as the "cat penalty box" to housebreak the cats that refuse to use the litter box. Me being the macho guy that I am (when I need to be) cleaned it up a bit and put a 4x4 gauze pad on it and secured it with medical tape. Of course, after my father left on Sunday evening, I was forced by my wife to go the the ER and have it checked out to ensure that it was clean and nothing foreign was left in it. Two weeks later I thought that it had been healing pretty well and went Geocaching with my wife and son (they are BIG into this hobby now). Unfortunately this particular cache was in the woods and I must have stepped wrong as immediately afterwards my foot with the gash in it was throbbing and the pain was quickly becoming unbearable. Still, two nights later I was still able to stand, albeit on one leg, whilst cooking a massively delicious dinner for my family. After dinner, my wife assisted me with cleaning the wound and we discovered based upon it's appearance and years of medical training that it was severely affected. YAY! Another trip to the ER.
  Upon arrival at the ER, my assigned PA happened to be a member of our church. When things like this happen it ALWAYS makes things ten times more interesting than they would have been otherwise. For instance, I have a tendency of not always being politically correct nor using language that is acceptable for all those in attendance. I have found that my linguistic skills become more unpopular when severe pain is involved. One big problem I have is that I am allergic to anesthetic medications (ie. Novacaine, Lidocaine, Betacaine, Cocaine, etc.) which means that local anesthetics to dull the pain that I will be feeling when the PA takes a scalpel and cuts open the infected wound on my foot to drain out the infection will not be used and will allow me to fully experience ALL the pain and fun. Before the lancing of the wound began, a high dose of antibiotics was going to be administed at my suggestion to the doctor. Rocephen was to be the antibiotic de jour and was to be administed in a large muscle for maximum effectiveness and since all medical paths seem to lead to the ass being the muscle of choice, I prepared for the painful injection. The nurse wanted to be a nice person and make the injection a little less painful by mixing in some lidocaine. Thankfully, after she had made the mixture and before injecting it she asked me again about any allergies I might have. At this point she practically ran out of the room with the needle to dispose of it and hide her complete embarrassment. My wife and I took this as an opportunity to laugh hysterically at how close I had come to death all because of a little cut on my foot. We also laughed about how the insurance policy that we just found out was no longer in force almost would have been a really good thing to have at that moment.
  Several weeks have passed since that ER experience, and I am able to happily able to report that my foot is 99% healed with no further medical intervention necessary. I can also report that I have not really experienced any further medical complications due to the MS. I have also finally scheduled an appointment with my neurologist to touch base on my progression and to re-evaluate my medicine since it is probably overdue. We will also most likely order a new MRI to see what the internal progression of the disease is. To say that least I have been slacking. However, since MS affects my memory terribly, I blame my slacking on MS not allowing me to remember all of the things that I should do. Thankfully, today, MS allowed me to remember to write my blog. Unfortunately it is a few months overdue, but hey, my 2 readers didn't miss much.
  On that note boys and girls, I shall end this blog for tonight and perhaps consider laying down in bed and hope that sleep will eventually come. I will listed to my sugar gliders prance and dance around all night and most likely bark at each other into the early hours of the morning. Goodnight (or good morning if you are reading this when the sun is up) and I look forward to any correspondence that you may wish to write. After all, this may not be your life, but it might be something like it....

Wednesday, May 7, 2014

Orbit has been achieved!

  Another year has past, another revolution around the sun, and again I have gotten another year older. This is an event that I have no control over me, but much like MS it has control over me. I change a number on paperwork when asked my age, I imagine a few more “lines” on my face when I look in the mirror, and over the course of the next twelve months I will most likely see more gray hairs appear everywhere. What will not change however is the fact that I have MS, I am going to get worse, and there will be times where instead of feeling like the chronological age of 35 that I am I will feel closer to twice that age as this disease ravages my body. However, today I am still able to smile as I stand up and blow out the candles.
  This past year has seen many things happen both personally, professionally, and globally. Some of those happenings included me and others happened around me and I was merely there to witness them. What I am happiest about is the fact that I was there to witness them and look forward to see what this year will bring. What I do not look forward to however is seeing what MS has in store for me. Unfortunately, knowing that there is no cure, treatment is often worse and more unpredictable than the disease, and symptoms are most likely going to change without giving me a chance to understand and accept them before they set in and change the routine that I had going on. Life with MS becomes full of things that you are unable to change, but the most important thing that I advocate to anyone dealing with MS, or any chronic/terminal illness, is that your personal outlook changes the way the disease handles you and the way you handle the disease.
  As this is my birthday, I am able to see and appreciate the way that this birthday is different than
last year. First off, I am writing this at 1152pm, 8 minutes before my 10 year wedding anniversary officially begins, and I have not been to sleep since the 5th of May. I woke up on Tuesday morning like always to put my daughter on the bus, then drive my son to school, and then run errands with my wife all day before coming home and being with my family before they all drifted off to bed. Unfortunately, my Butrans transdermal pain patch had run its course and it appears that we were not able to place the new one on in time which tends to leave me with uncontrollable muscle spasms that lead to pain and soreness in all muscle groups that are affected by most of the spasms. I ended up soaking my legs in the shower twice after several failed attempts at sleep which left me a quivering mass on the bed next to my beautiful snoring wife. As I figured that I would have to put my daughter on the bus this morning like always I refused to ingest any amount of my Ambien (normally it can take 50-60mg for the effect to get me to sleep) and we didn't have any wine in the house (last resort as it seems that my incredibly high tolerance for medicine also applies to alcohol,) so instead I had no recourse but to “suffer.” Since I was unable to get into any type of comfortable position without the spasms, I ended up remaining awake until my alarm sounded at 7am and my wife got my daughter ready and on the bus to school. Then again my alarm sounded at 8am and since my son and wife were both awake, I got into the bathtub and filled it with amazingly hot water hoping that I could at least get my muscles to finally relax enough for my day to not be incredibly painful and I would not have to spend my birthday confined to my wheel chair whilst my body worked against me. As I have said before, I am stubborn as all hell, and I refuse to allow MS to win. This was also the time that I realized that I would be up for the remainder of the day.
  The rest of the day went by quite well, with a great conversation for about an hour this morning whilst I drank 2 large cups of McDonald's coffee and we sat outside in the beautiful spring weather. After that I picked up my daughter from school, then quickly went to my son's school, and then went to my wife's office to pick her up so that we could all go to my daughter's allergy doctor appointment in Charlottesville. After that we went to the auto parts store to pick up the window regulator that I ordered yesterday to finally fix the broken window on my wife's SUV, which I should add that I have never before repaired and had no clue what I would have to do in order to replace the part and get the window operational again so that we could get the State Inspection done since the sticker expired at the end of April. Then we went back to my wife's office where she went back to work, the kids collected caterpillars in a bucket (I swear there are at least 100 of the damn creepy crawly things in my house now,) and I began the repair of my wife's window. Long story short, I was able to figure out how to replace the window regulator and motor and her driver's side window is operational again which makes her a ery happy woman. Perhaps I should have repaired it as a surprise and I could have passed it off as an anniversary gift. I believe the 10th anniversary is the paper anniversary, and I could have given her the receipt for the expensive and relatiely easily replaceable part. I could honestly hear the 6 people who will read this month's blog snickering and amazed that I would sink to such a low level of romantic trickery. Well, obviously I didn't do that and will actually have to get her a good anniversary gift.

  Right now as I write this I am sitting on the couch, the wife is lying in bed reading with the occassional snore, the kids are long ago asleep and snoring, and I am attempting to relate my birthday, insomnia, and humor into something that other people might wish to read whilst I enjoy my 3rd small glass of wine (Sweet Red, Sutter Home). Unfortunately, I am still not tired. I can honestly say, at least for me, that insomnia is one of the worst symptoms that MS brings to the table. For some it is the inability to walk, balance, talk, thing coherently, numbness, tingling, and the multitude of other annoying and horrible symptoms that MS is known for. As for me personally, nothing is more annoying that listening to everyone else peacefully sleeping as I sit here in this very small town that is essentially closed for business once the sun goes down where I am unable to enjoy the benefits that sleep brings. On the good side though, it gives me ample time to work on my pacing skills, my stumbling, my controlled falling, and time to write oddly interesting blog posts like the one that you just read. Hopefully you enjoyed it, and thank you for the “Happy Birthday” wishes that you silently wished me when you realized that this post was mostly about it being my birthday. Thank you. Whilst this may not be the life that anyone wanted or imagined, it is something like it...
The window in operational order! Yay me!

My son being a zombie.

Both of my youngest children in full zombie mode.

Photo shoot I did of my kids last weekend.

Another photo I took last weekend.
A photo my son took with my camera this                                      
Another photo from last weekend.

Yet another photo I took.

The beauty of spring.

More spring beauty taken last weekend.

A small collage of fire photos I have taken this                            year.

Friday, February 28, 2014

Beware the numbness of March

   Welcome to March. With any luck this month will bring an end to the many bouts of snow and freezing arctic temperatures that have been plaguing this area during this winter season. It has already brought a gift to me, and that gift is a new symptom. YAY to symptoms! Welcome, gradual progression of numbness to my left hand.
   A few days ago I began having numbness in my left pinky and ring finger. Now, numbness is nothing new in the world of MS, so against the wishes of my wife I didn't call my neurologist to report the newest symptoms. Within 3 days, I found that this numbness has become greater and has taken over more than 90% of my left hand and is approaching my wrist. Interestingly enough over the past few days I have noticed that sometimes the numbness seems to abate and then it comes back again without any warning. These strange little occurrences are what makes MS such and interesting and unpredictable disease. One day you have a certain set of symptoms that you have been used to and worked your routine around, and then the next day another symptom appears and you try to figure out how to work the new symptom into your daily routine. This is where I am at now, but thankfully (unlike my wife) I don't really use my left hand for much and thus this numbness is not much of an inconvenience. After so many years as a fireman, I always live the firefighter motto of Improvise, Adapt, and Overcome. MS really does make those words a staple to daily life.
Many people will tell you that any time you discover a new symptom whilst living with MS, you should immediately notify your medical team. For those who aren't aware, your medical team consists of your primary care provider, your specialists (ie. Movement disorder doctor, neurologist, nutritionist, etc), your spouse (if involved in your care), and any other people that you keep personally involved in your illness and disease management. My wife is my biggest advocate when it comes to the management and maintenance of my disease, and as much as I love her, she is also my biggest pain in the ass. No matter what though, I enjoy every moment that she spends driving me insane when it comes to my symptoms and ensuring that I notify the rest of my team and the way she tries to keep me on top of my medical needs. This is what many people with MS are not always able to have as their disease progresses, a never ending advocate.
   When my wife and I first sought the truth behind my strange symptoms, the first thing that my mother said to me was that my wife would be the first one to kiss me goodbye as I got sicker. Now that we have been through 4 years of knowing generally what we are in for, several symptoms, multiple medications, the terminal wait for a decision from Social Security, and an unbelievable amount of doctor's appointments, she is still by my side and still maintaining control of my health. Although I often find myself surprised by the number of people with MS who regale others with the way they were abandoned by their family and friends once their disease began to progress or once they informed other that they were sick; I unfortunately find myself understanding both sides of the equation. Whilst it is extremely hard for anyone to watch the person they care for begin to “fall apart,” it is also hard for those of us with the illness to place a burden on anyone that we care for. So, who should leave whom? Should the person who is sick be the one to leave to keep from being the burden that they are afraid they will become, or should the loved one leave so that they never have to be burdened. I propose the opposite.
   My wife and I have made my disease progression a source of amusement and constant humor within our household. My spasms, forgetfulness, lack of coordination, and general craziness that comes with MS have been a great source of fodder for the entire family. I remind my children constantly that payback is going to be a bitch with all the diaper changes that I have had to perform for them and the incontinence that will be progressing for me. My wife reminds me of the life insurance we have on me and how at any point she can cash in on that by increasing the danger within the house for me by simply rearranging the furniture. I remind myself of the humor every time I try to do something simple with my hands and watch as I fumble for ages whilst trying to accomplish the task. The latter can be especially funny when it comes to anything with buttons, and if you don't believe me, wait until your MS progresses and then buy a whole bunch of button down dress shirts and let the hilarity begin.

   What I look forward to the most this March however, is that I am one step closer to reaching my goals. Those goals include being able to walk (for the most part) and being with the ones that I love. My wife and kids are still here with me and driving me just as crazy as always. My wife is still getting on my case about notifying my medical team about the changes in symptoms and getting my bi-yearly MRIs done. My kids still find it funny to litter their room with strategically placed toys in order to slow me down from being able to reach them when they are misbehaving. Even the cats have coordinated themselves and the way that they get into the proper position to trip me up whilst moving around the house. Personally, I think that I should just use my wheel chair around the house as payback to them, but for some reason the wife and kids won't let me. Lucky cats. For now at least. Every day I am reminded of how many things there are to laugh about when it comes to having MS and how many things there are to be thankful for. After all, it is not the life that I have chosen, but it is something like it.

Sunday, February 9, 2014

Pain? Or pain in the ass...

    When one is diagnosed with a chronic illness or terminal disease, there are many things that you are informed about. Unfortunately, there are also many things that you have to find out on your own. Most diseases follow a path through the body that is predictable and common to such an illness. Unfortunately with MS, there is no path of predictability which means that everyone experiences the disease differently. One common article of contention within the MS community and the medical professionals at large is the discussion of chronic pain.
    Long before I was diagnosed with MS officially and whilst there were several symptoms of the disease that I had been ignoring occuring within my body, pain was something that I had been experiencing and ignoring as I had just perceived them to be due to my job or my age. Small aches and pains that didn't quite have a reason to be there. Little constant pains that would pop up randomly and would then go away without any sort of changes in my behavior. I tell you, not everyone will experiences things like this, most will feel some type of pain in their body that they will most likely be able to trace to a movement, or misstep, or fitness and lack thereof. What I am saying is that not every little ache and pain that you may feel should be indicative of some horrible illness and may in fact just be you getting old and out of shape. So, stop reading this blog and get outside and do something physical! Ok, I am ready just kidding there. Keep reading! I need more readers!
    What I have noticed personally; since I have yet to find the secret formula to place myself into someone else's body, is that I have some consant pain but there is nothing that seems to be able to remedy it. I have a pain medication patch that is on my body 24/7, but I can still feel the pain brewing in the background and more unfortunate than that is that the medication does nothing to stop the spasms that are constantly occurring throughout my body and only work to contribute to my overall pain. Such a vicous cycle, don't you agree. I am able to ignore most of the pain. Then the spasms progress and get to the point where I am in tears because they cause pain everywhere in my body and I know that I can't ignore it. So, I hope that there is enough medicine in my bag of tricks that I can mix to make it all stop. Let me just make a disclaimer here: DO NOT TRY THIS AT HOME. Or work. Or at the park. Or in your garage. You get the picture.
    Mixing medications is a BAD idea. I don't care if you are a “nobody” or a master surgeon. This is just plain dangerous. Now, with that being said, this is something that I do on a nightly basis. Part of the reason for this is that I have discovered over these past few years is that I have a terrifying tolerance for medications. In the little more than 3 years that my doctor and I have been working dilligently to manage both the spasms and the pain, we have gone through almost every type of medication that is available without rendering me completely useless to the awakened world. We have used everything in the non-narcotic category before we finally had to move to narcotics (which was the last thing my wife and I wanted to do). We have done this with pain management medications as well as those used to control the spasms. Unfortunately, as it stands now I believe that we have met the effacacy limit for the meds that I currently use and thus must now try to discover what the new medications will be and see how long it takes to get them right.
    On the opposite side of the spectrum, I have heard many stories from others with MS whose doctors immediately want to treat them with medications. Before the doctor has done anything other than an initial physical, they want to start giving hard pain medications to the patient to “manage” their pain. Neither the patient nor the doctor have enough of a relationship together to know what, if any, pain the patient is in. When I first began searching for answers to my symptoms, this was the first type of doctor that we encountered. Barely asking any questions, and doing no physical exam whatsoever, offered me “pain drugs” immediately. When I told this doctor several times that medications were not at all what I wanted, but rather wanted to know what was going on with my body, he still refused to comprehend what I was saying and just continued to try to prescribe strong pain drugs. At this point my wife had to physically stand in front of us to keep me from becoming too upset and doing something stupid. These types of doctors are unfortunately all too common when it comes to the world of MS and the like diseases.
    Thankfully, we were able to get a referral to a specialist from this doctor's office which led us to my current neurologist which has been with me since the very beginning. When we had our very first consultation I made it extremely clear to the doctor that I did not want any medications, and instead was seeking a diagnosis as to what was happening to me. I think this came as a surprise to him since just as there are doctors who wish to give drugs without reason, there are just as many, if not more, patients who seek medications rather than a true diagnosis and management method of their ailment. However, when you put these two types of people together, the only result is mistrust, deceit, and in the end death for the patient. These types of people are the ones that make understanding MS and pain so difficult within the medical community because although one may be able to outwardly see physical MS symptoms in a person, seeing pain is not truly possible and relies solely on the patient.

    In conclusion, I write this as the topic for this month's blog as I find myself in constant pain and find that although I never wanted medication initially, I too was unaware of the level of pain that comes along with MS as the disease progresses. Now that I have been living aware of my disease for these past 4 years (almost), I realize that there are many questions that will never be able to be answered merely by reading other MS-ers accounts of their illness. What can be gleaned by reading and research though is an insight into the many different ways that this illness affects those with it and how many have dealt with it both in management and in maintenance. These accounts can also give an insight into ways that you might live with and deal with MS as it pertains to you. Or, as I have discovered through my own twisted way, different things within the MS world that can cause humour, comfort, perspective, and the medicinal power that only laughter can bring. For as I have always said, this may not be the life that anyone ever imagined having, it is something like it.