Thursday, April 23, 2009

Pocket Full of Kryptonite

I apologize for the break from updating my blog. I was really focused on writing as much as I could during MS Awareness Week but since then time and circumstance has gotten the best of me.

There is no easy way for me to say this so I’ll just start with the update that I’m currently on medical leave from work. Four weeks later, it still pains me to type it and the day I talked to my manager about it was about the worst conversation I’ve ever had to have; personal or professional.

I’ll go into the why for a moment but first some related thoughts - maybe one day I’ll make a Top 100 Reasons MS Sucks(*) list and, if I do, I guarantee you the following two sentences will be on it: For so many of us with MS, we are diagnosed at pivotal moments of our lives. We are beginning to start a family, grow in our career, maybe even come into our own of who we are as an individual and BAM – we are diagnosed and everything you thought you knew, your dreams…all require a second look. Will I still be the kind of Father I’d always hope to be? If not tomorrow, how about 10 years from now? 20? And what about as a husband? Its impossible not to feel tremendous guilt – having MS wasn’t part of the equation when Angela said “I do”. The vows say “in sickness and in health” but it was never my intention for Angela to fulfill that obligation before I turned 32. It’s not quite a Hollywood movie, where the unknowing spouse marries somebody claiming to be somebody they aren’t (A Russian spy? A mob informant in a witness protection program? Or how about one of the thousand hellacious options from any Lifetime movie?) – and I’m not big on creating drama where none is needed, but the fact is, this isn’t a 2 hour movie – this is 24/7/365 and its something I need to deal with, and to a certain extent, accept and get over. I have every intention of being a kickass Dad and adoring husband but I’ll just need to be a little more creative than I would have thought if you asked me how I would have accomplished being that Dad and husband five years ago.

(*) For the record, I know “Sucks” is an infantile word, one better suited for when I was 19 and talking about the Redskins latest football opponent and to be honest, I did spend a few moments trying a few other words out but in the end – it is what it is. MS Sucks.

Arriving at taking medical leave didn’t happen overnight – it was a long road where I examined every other possible solution. It certainly wasn’t on my mind when I met with my MS doctor earlier this year. It was a routine appointment where I was providing my doctor an update on how I was feeling. I explained the issues I had been having with my legs. I knew I was experiencing issues with my legs, as far back as last November, but it had gotten considerably worse since then. Another ailment that had become more common was having what I call “icicle” finger and toes. Basically, my fingertips and toes feel like I held them in ice cold water and there is little I can do for relief. Driving in my car has been where I find my greatest friend – the heater. I would blast the heat so high and stick my hands out like I’m at a campfire…what a great feeling as the heat warms the rest of my body. The ailment sounds strange, but the worst part is how it chills the rest of my body – literally. I feel it to my bones and there is little way of finding comfort outside of blasting some heat in a confined space. I’m almost always cold – I’m pretty sure I’ve sent off bad body language cues by frequently crossing my arms in meetings to keep my hands warm or sometimes when we get back into the car I’ll ask Angela to not turn on the AC, yet, because – yes – the warmth of a car roasting in the San Antonio sun all day feels so, so good. And I’m not sure how many of you have ever tried to type at work or home with cold hands but trust me its no picnic. Some nights if you drop by our house, you might see me wearing mittens to keep my hands warm. I go through socks constantly. At work, my feet are actually a little relieved by wearing shoes all day. But at home, on some days, I’ll go through 3-4 pairs of socks because, as I say, the previous pair “lost their power”.

After discussing these two ailments with my doctor she recommended that we take some new MRIs to evaluate the progression, if any, of my sclerosis. I haven’t covered our trip to the Mayo Clinic, yet, but as a preview let me just say that the MRI of my spine and neck was one of the worst experiences of my life. My entire body was in a long and narrow tube, with not much room to move. Not that I was allowed to move, anyway! In fact, in Minnesota, they had to re-do a few images because I must have moved, or coughed…or breathed too much? It took nearly two hours and was an absolute disaster so this time around when my doctor asked if I wanted assistance during the MRI (valium), I quickly agreed.

So it was a little better experience this time but not by much. I won’t go into much detail (think lying flat with no movement for 120 minutes – ok, there was one break where they actually pull me out of the tube and inject some dye into me – and through it all you get to stare up at stickers of cats and horses) of it and instead will fast forward to my follow-up. After reviewing the MRIs of my brain, spine and neck my doctor confirmed that my MS had progressed since May 2008 in two ways; additional lesions and an increase in the size of lesions that already existed. The ailments I was facing with my legs and “icicle” extremities were both signs of a relapse (as I would later learn, they are each their own individual relapse). Additionally, by the time of the follow-up, vertigo had begun to rear its crazy head again. Taking everything into account, my doctor recommended I undergo a steroid treatment to hopefully solve the issues I was having with my legs.

So for three straight days I went to a medical facility (same building where my MS doctor is located) to take the steroids through an IV. I sat in a Lazy-Boy, they played nice music, provided Jolly Ranchers (the treatment creates a metallic taste in ones mouth) and I got to break in my Dad’s Kindle that he had graciously passed along to me since he upgraded to the Kindle 2. The difficult part, of course, was the actual IV and to avoid multiple “stickings” they actually left the catheter in for me to wear the remainder of the day. So after each morning treatment, off to work I went with a catheter in my left forearm. I was wearing long sleeves each day so outside of arriving a little later than normal, it was business as usual. Of course, I just needed to make sure nobody was running into my left arm - oh and make sure I didn’t have any incidents of “‘roid rage”. I kid but among the many side effects, that was one of the major ones – becoming ridiculously angry for no apparent reason. These aren’t the kind of ‘roids that build my muscles or give me back acne but they did amp me up pretty good where I pretty much had three straight sleepless nights. But other than that I can’t say I felt my mood alter much or noticed any other changes. I actually felt pretty good. What was terrible were the few days after I took the steroids - I think my body had gotten used to them and it was a miserable adjustment to a steroid-free bloodstream. Additionally, the pain actually felt worse those few days after the IV – I barely wanted to move, and it wasn’t just in my legs anymore, it was throughout my entire body.

The medicine was supposed to take 3-5 weeks before my legs starting feeling better so after taking the steroids it was really a waiting game. During that time the pain got worse and became a daily hindrance. My icicle hands reached a peak around this time period – there were moments during the day or night where Angela needed to fit me with gloves and wrap me in blankets to keep my teeth from chattering – but thankfully they are now occurring much less frequently. My vertigo, on the other hand, has replaced the icicles fingers and toes to keep my bothersome legs company. Being at home has made a huge improvement with my vertigo from the standpoint that I’m not moving around a lot. But when I do happen to venture out, for example an ill-fated trip to Barnes & Noble, it is a very uncomfortable experience. Right as I enter, seeing the columns and columns of books, people walking around, various conversations taking place…I just feel like the room is spinning and I need to sit down. Even Easter Mass was an adventure. MS ailments or not, I was not going to miss Easter Mass with my family, and the vertigo made it a memorable experience. At one point with the room spinning so fast (was that an unicorn I saw?) I had to close my eyes and it’s a relief knowing that Angela is always carrying Nauzene in her purse, in case I start to feel nauseous. And my vertigo doesn’t just confine itself to public places. One of my favorite times of the sports year is March and watching the NCAA basketball tournament. Although my Hokies are usually on the outside looking in, the three weekends of the NCAA tournament is always something I look forward to. This year, watching the games brought a new twist…in fact, *trying* to watch the games. I literally got dizzy as the players ran up and down the court – who knew I’d ever be relieved for a TV timeout?!?

Over a month had passed since my IV steroid treatment and it was time for my follow-up appointment. I explained to my doctor that my leg problems had gotten worse, not better, and also indicated a heightened sense of vertigo. I was distressed to learn that my legs, icicles and vertigo were actually separate relapses…up until that point, my assumption was something in my life my cause a relapse (sickness, stress, or just general worsening of sclerosis) and during this “relapse” I might have one or many ailments which affect me. The first part is true, and in my case the trigger was probably the worsening of my sclerosis, but the latter was not. Each ailment affecting me was independent of the other and was its own exclusive relapse. After discussing more with my doctor (who was surprised to learn I went to work the same day after my IV treatments), she recommended a second steroid treatment – this time an oral steroid to be taken over 10 days – and just as important she reiterated the need for me to rest my body. Not just physically but mentally as well.

The fact is, Super Man is a fictional character, and my attempts to act like one by taking my treatments and “toughing out” my ailments while continuing to live status quo in the other areas of my life was doing my body harm. Not that this was surprising to me – I knew it deep down inside but didn’t want to admit it and just hoped that I could tough through the pain which after all is something I had become quite familiar with. So in addition to trying the new steroids my doctor recommended I take a leave of absence from work and I agreed.

This isn’t a pulled hamstring. Or a sprained ankle. Or, as it is in Texas, bad cedar allergies. What is occurring to my body requires me to be thinking about Mike in five years, ten years and farther into the future so in a certain respect, getting up the nerve to walk into my manager’s office and discuss this decision took some maturation on my part. Might sound hokey, and I’m not attempting to sprain my neck by patting myself on the back – but it’s not about self-congratulations, it’s just the truth. I was being a silly kid trying to fight through everything, going to the various doctor’s appointments, undergoing the steroid treatments, suffering with my deteriorating health yet wanting everything else to remain status quo. It wasn’t working and a change was required. My legs and mobility worsening is one thing but the vertigo was reaching levels where…well, it just wasn’t safe. Not just for me to be walking around an office but more importantly, driving to work…driving anywhere. Waking up each day and living as I was wasn’t working and a change was required.

I have another post I was working on before all of this came up and I plan to get back to it soon – but for now, I wanted to give you all the latest. Hope everyone is well and is enjoying the return of Spring!


  1. I just recently discovered your blog, Mike, and have enjoyed reading your posts. I have a couple of questions for you: in your earlier posts, you spoke of a diagnosis of Crohn's disease (and of the symptoms that led to that diagnosis). Do your docs still think you have Crohn's in addition to MS, or is the thinking now that the gastrointestinal issues are also MS-related? I ask because I also have gastro problems, and to quote you, "all of the gastro bells and whistles you can imagine" (!!) My neuro did have a blood test performed that could indicate IBD, but I don't know how specific to Crohn's it is (in my case, the test result was negative). My second question: I was interested in the mention in one of your posts of having "icicle" fingers and toes, which I constantly have (even in weather most people would find comfortable). What intrigues me is that, based on what one reads, MS patients are supposed to love cold and hate heat! But I tend to prefer warmer weather because of my cold extremities. I'm wondering if your doc has ever explained this apparent paradox? (My dislike of and discomfort in colder weather is one of the factors that made me question my MS diagnosis). Thanks for sharing your thoughts and creating a great blog. Wishing you good health in 2013!

    1. Hello - sorry for the tardy reply, didn't have my notifications turned on, so didn't know you had written, feel awful I haven't answered your questions earlier but here goes:

      -No, I do not have Crohn's. That was ruled out pretty early when I went to The Mayo Clinic - I do have GI issues, but I (think) they are mostly unrelated to MS. As it turns out, my body processes food *really* fast. They determined this at The Mayo through a test where I ate some eggs and toast that had some nuclear markers on them (yes, nuclear) and then they scanned my stomach every 10-15 minutes or so and from that they determined that my body processes food faster than 99% of the population. I don't have the exact results in front of me but I was an outlier enough that they actually wanted to do an additional study on me solely focused on that! (I declined, just wanted to get back home). Anyway, that has been something I've been able to moderately treat with daily OTC medicine but I still need to be cautious of the types of food I eat or drinks I consume (and nausea is pretty much a daily occurrence).

      -The "icicle" fingers and toes...ah, the gift that keeps on giving. Always in socks, rarely finding relief. Lately, my feet feel like I've stepped in cold's an awful sensation. I keep trying to wipe them dry but no such luck. And you are right, it could be 100 degrees here in San Antonio but my fingers and toes might be ice cold. The heat certainly impacts me (from a fatigue/vision stand point) but whether it is hot or cold outside I'm always countering the "icicle" dilemma.

      -To your specific question, I certainly believe this issue is related to MS and my neuro is in agreement with this, too. I'm not sure why cold weather (or even the frigid air conditioning that is pumped into most stores, restaurants, movie theaters, etc.) and its impacts to people with MS isn't talked about more but it's real -- you aren't alone! :)


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