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.