Wednesday, November 26, 2014
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
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
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
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...
Friday, February 28, 2014
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
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.
Wednesday, January 1, 2014
Well, allow me to officially welcome you to 2014. It's kinda funny, it has been 4 years since I received my official diagnosis of Multiple Sclerosis and 1 year since I began chronicling my life with MS in a blog. To think of the things that I have written, and the things that I have not, it makes me wonder how other people in the world deal with their MS. For me, laughing has always been the best medicine. Of course, I have discovered that with MS, medicine can also be a constant necessity that laughter alone can not cure.
Since receiving the diagnosis of MS, I realized that I was pretty doomed from birth. After all, my initials are MSA. Granted, that also gave me a reason to be a fireman from birth as the masks that most departments in my area use are MSA breathing apparatus. Hey, told you before, it's a calling, not a job. However, the other day my family and I were at my aunt's house for a visit and she noticed for the first time that my initials were MS and it got a good little chuckle from all of us. I mean, you can't deny it, from the beginning of my life I was doomed to be a fireman who gets MS. Don't need a palm reader for that one, it's right there in the name. Yet, my wife wonders why I desperately want to change my name, which she has continually denied allowing me to do. I have tried telling her that perhaps it is the first step to my cure, take the disease out of my name. For some reason, she doesn't believe me. Well, it was worth a try.
I have used humor in so many things in my life that I often don't know when something shouldn't be funny. I have laughed at just about everything I can think of. My wife still laughs at me about the time I shot myself in the ass. I will admit, looking back now it is kinda funny. Sure as hell wasn't at the time. I won't get into the entire story here, but will just give you the basics: re-holstering my .357Magnum (no longer have) with the hammer in the engaged position and accidentally pulled the trigger causing the bullet to exit the barrel, go through the holster, down the side of my ass, through my wallet and my pant leg and finally lodge itself into the tile and cement floor where I was located. Again, funny now, not so much then. Just like MS.
When I look at my life with MS, I realize how many different things I have been able to laugh at now, but was either angry at or embarrassed by when they happened. There have been so many times that I can think of just recently where I have gotten mad or angrily embarrassed at because my MS caused me to not be able to do something or caused my to not do something properly. For instance, just yesterday I dropped the rabbit's litter pan on the floor of the kitchen spilling rabbit poop and dirty litter all over the kitchen floor as my youngest daughter was trying to help me clean it. It wasn't that she caused me to drop it or in any way wasn't helping me, it was just a random spasm in my right hand/arm that caused me to knock the pan out of place whilst we were trying to dump it into the trash can.
A few weeks ago I was trying to serve some noodles to the kids for dinner and when I was trying to fork them out of the strainer and into bowls another spasm caused me to fling noodles onto the floor. Not just a few noodles, but a fairly large amount. Again, I got upset only because it is embarrassing to allow me to show my weakness in front of my children and their friends. I am not necessarily embarrassed by my disease, in some ways I wear it as a badge as a testament to my years in the fire service (I mean, hey, we all die, either by fire or cancer or something else, why not MS). I am still getting used to being the Daddy that used to be viewed by my children as strong and unbreakable, and now that they know that I am "sick" and that there are just certain things that Daddy can no longer do. That is the most difficult thing that I have ever had to deal with. It is also the one thing that has opened up many different dialogues with my children. Daddy isn't SuperMan.
No matter the progression level you are at, open dialogue with your friends and loved ones is the hardest and easiest thing that anyone can experience. Many people, myself included, have had the internal debate regarding disclosing the illness to immediate family and close friends. Many more have had the debate when it comes to discussing it with co-workers and employers. For me, I never really disclosed it to my employer, I just took my retirement for "medical reasons" and left it at that. Granted, by that time several of the people that I worked closely with knew exactly what was going on and had helped me keep it "covered" until I chose to leave the fire service, but I pretty much considered those trusted few as family more than co-workers. When it came time for me to tell them, it was the easiest conversation to open, although I was unsure of what their reaction might be. It is the same way when it comes to telling other family members. When you say Cancer, or AIDS, or Diabetes, everyone already has a pretty good idea of what is going on and how things are going to be managed and how the disease is going to progress. With MS, their is almost no standard progression chart that one can follow to know what is next. You may have no symptoms for months or years after the diagnosis, or you may see a constant change in symptoms from small changes to drastic ones. There is no way to tell. This leads many people to be afraid. I promise you, when you start to tell them, the first thing they all will say is, "oh God, I am so sorry." Ok, thanks, but, WHY are YOU sorry? Are you the one that gave it to me? if so, I think that we need to have a loooooong chat...This is usually my reply to people just to throw them off the pity path and give them a moment to realize that I didn't just deliver "bad" news to them, just news that might be good to know. Nothing to be sorry about, just another part of life that is out there to be aware of. Just like I would tell you if there was a hornet's nest above your front door. It doesn't mean that you board the door up and never use it again deciding that you are now going to climb in and out of the dining room window instead. You take that piece of information, and you incorporate it into your already existing knowledge of life. And, if one day you walk out that front door and a hornet stings you, you will be able to go back and remember the day that I told you about the nest being there. It's all just part of life.
When it comes to New Year's, everyone makes resolutions that may only last a few days or weeks. When it comes to MS, most resolutions are unrealistic vows that we silently make against our disease. Such as, this year I will not let you damage my Myelin. This year I will not have any more relapses. This year I will not lose my balance and fall down the stairs. Ok, the last one is actually a possibility. You can do what I did and move from a house with stairs to a house that is one level. I have kept that silent promise and I no longer fall down the stairs in my house, because there are no stairs. I know, you might consider that cheating, but hey, I never said I wasn't a cheater!
This New Year's I too have made a few resolutions. I have quit smoking. I know what those of you who know me well enough are thinking, I have made this resolution before and failed after a short period of time (usually less than a week.) Well, this time I truly hope to succeed. I stated taking Chantix about 3 weeks ago. Even though I continued to smoke during the initial weeks of Chantix, I did notice that I had reduced the amount that I was smoking. As of New Year's, I have not smoked an actual cigarette, and have instead been using an electronic cigarette. I have noticed the slight craving in the back of my mind for a real smoke, but I have been able to satisfy my need for something between my fingers and the constant need to puff on something. I know that many of you dirty minded people have a comment that I am sure you would love to insert there, trust me, I would too if I were reading something saying the same thing. Just remember, there is no harm in being a dirty minded bugger, hell, it has given me many opportunities to make others laugh at odd times.
I have also vowed this year to be a better husband. This vow is even harder than quitting smoking, that I can promise you with 100% certainty. For the last 10 years (almost) that my wife and I have been married, I have been completely blind to how close I have gotten to losing her. Hell, I went with her to the bank to sign paperwork for her bank account, not even putting 2 and 2 together that this was a single account for her. Hmmm, we have always done our banking together, and now she wants her OWN account and didn't want me to have ANY access to it. To any normal person that might have been a red flag. Not to me! Dum de dum dum dum de de. Didn't see anything wrong there. Spending more time at "work". When I would tell her that I loved her more, she wouldn't argue....Hmmm, yet again, SIGN!!! Well, since we have finally laid everything out on the table with each other, although for being a very serious and long overdue conversation, there was a lot of laughter between us both during it, I now know what I have done to cause such a rift between us and am going to work even harder in 2014 to get our love life back to where it was 10 years ago. First things first, I am getting a lot of plastic surgery to make me look 25 again! Ok, that is a joke. Seriously, I don't think there is enough money in Bill Gates bank account to make me look like I did at 25, and if you saw me then you would know that I wasn't any better looking then than I am now so what would be the point. Personally, I think that all of the grey hairs I have, especially those that keep showing up in my beard, make me look much better at 34 than I ever did in my 20s. Like I tell people, its not really grey hair, it is seasoning (ie. salt and pepper) as I am a dish that needed a little more flavor.
My greatest vow is to be a better father. No matter how many years I live on this earth, or how many "World's Greatest Dad" coffee cups I have (at current count, 0, just FYI) I can always and always will strive to be a better father. It is a goal that never gets old and there really is no way to measure when you have reached the top, thus I will just keep reaching. Granted, my oldest daughter Jennifer is the one I truly wish could benefit from my desire to be a better father, and I really hope that this is the year that her and her mother allow me the chance to enter more and more into their lives. I know that at 15 she really doesn't think that she needs me for anything, except maybe to borrow the car keys, but I am hoping and praying that she will give me the opportunity to redeem myself for my previous failures in fatherhood with her. As for my two youngest, I just want to do whatever makes them happy, smart, and able to assist them in growing up to be the people that they want to be. That is what most parents fail to realize when it comes to raising their children. Most parents want their kids to be the people that they want them to be (as in the parents.) The only way I will ever be happy and truly feel like I have succeeded as a father, is when my child tells me that they are happy with themselves because they are the person that they have always wanted to be. Granted, I hope that who I want them to be, and who they want to be are the same thing, their happiness is and always will be MY happiness. As you read this, I hope it has made you consider what you plan on achieving this year. I hope that you plan to be a better person than you were in 2013. I hope that you plan to accomplish your goals that you have set forth for yourself regardless of any goals that others have set forth for you. I hope that you plan on loving twice as much this year as you did the last. And I truly hope more than anything that you plan to be twice as happy this year as you were in 2013. After all, our lives are not that different and your happiness could very well be part of my happiness. It's not just our life, but it is something like it.....Happy New Year!