I will pick up with our trip to The Mayo Clinic in another post but first I want to give you all an update on my health and current treatments, starting with Part 1 tonight.
Not sure what it is about the month of February and how my body responds to MS. As I mentioned in my previous blog, February 2008 was the month that triggered my visit to The Mayo Clinic and ultimately my MS diagnosis. February 2009 worked pretty hard to be just as eventful.
I’ve discussed the tingling and numbness that I often get in my fingers and toes; that’s the only places I got it before I flew up to Mayo last year. I remember my neurologist in Minnesota asking me if I’ve ever gotten the tingling in other parts of my body and at the time, I was fortunate to answer no. Although I was responding to a medical query, it reminded me that with MS to be careful what you wish for and never, ever…ever….take anything for granted. Not long after I answered in the negative with my doctor, I was at the airport with Angela heading back to Texas, standing in line at the airport to get a newspaper and as I took a step forward and placed some weight on my right leg I felt the tingling and numbness that had previously stopped at my toes extend itself all of the way up my right leg. And there it was. It’s been described as “heavy leg” - I guess that’s a pretty good description. It really is hard to speak to exactly but there is tingling, numbness and the feeling of a brace, or something wrapped around my leg, all at once. There wasn’t any pain associated, at the time…just the initial shock and then, like everything else, you make the necessary adjustments. If you know me pretty well, maybe you noticed a difference in how I walk, but probably not. After getting back from the Mayo the tingling spread to other areas, most notably my face. My experience of face tingling brought back some memories from when I was much younger....
Through Rain, Sleet or Snow…but Hold the Spiders
When I was younger, my first job was delivering The Washington Post around my neighborhood in Springfield, Virginia. It was no treat to wake up at the crack of dawn, walk down to the corner of my street, organize the day’s paper (back in the day, when kids were actually paperboys, we’d manually have to add the specific day’s insert – for example, the Real Estate section…not sure how this is done now but this is why Mondays were the best for a paperboy, generally there are no inserts on Monday and of course, personally, I’d be one of the first each Monday to read the summary of the Redskins game from the previous day, which I always thought made me semi-special for some reason; remember this was before the internet, this was the days of calling “The George Michael Sports Machine” and cycling through 10 options to find out whether the Washington Capitals had won the night before) and then off on my route to deliver the day’s paper. On weekends, with the Sunday paper, my Dad would help out sometimes, carrying me around in our glorious wood-paneled wagon from street to street. But, mostly, it was me against the environment. The Winter would often stretch far into March or even April (which, as many can attest to now in the Springfield area), so being awake and outside at 5 a.m. isn’t so charming. My first few mornings out there delivering the paper, I’m pretty sure I was asking myself if I was crazy signing up for this gig. My brothers had done it, so it seemed like a natural progression for me to follow in their footsteps but it got my mornings off to quite the buzzkill. Until, of course, the first time I went on “Collections” – that is, walked from house to house to collect the monthly payment of the homeowner’s. I still remember the first house I went to “collect” on – my brother Mark went with me to show me the ropes – and I felt kind of bad knocking on somebody’s door to bother them and ask for money. But to my surprise they answered the door with huge smiles and pleasant conversation and in the end they handed me my check before I could even ask for it. Walking away from the house I pointed out to my brother that they paid too much and he corrected me, “Monkey Boy, that’s your tip, you keep it”…I was starting to become a fan of this work thing!! The enjoyable banter and warm smiles weren’t always the case, that’s to be sure, but it was a fantastic growing experience….work hard = $$$ - and get this…work harder = more $$$! I was hooked and I’ve always held some sort of employment since then: cleaners, Chinese restaurant, video store, two College Internships and then onto the professional world after College.
Looking back on being a paper boy, as bad as the cold weather was, it was never the worst part. It was close…but for me – and now remember, this was also back in the day when your paper would be delivered at your doorstep…not your drive way, not somewhere in your yard, your neighbors yard – it was your doorstep, that was Option 1; Option 2 was receiving a complaint form and no paperboy wanted to ever see one of those forms – well, the worst was always encountering the unseen spider web - right in the face. I know this sounds silly but, although a temperature less than 70 gives Angela and me a chill now, growing up in D.C. you are used to and expect the bitter winter. I think that helps explain why the unexpected spider web trumped the expected weather conditions. And it would always happen on the final leg as my excitement of almost being complete would be tempered with a face full of cob web. I never got used to the experience…I delivered papers for a few years, but every time it happened was just as terrible as the first time. After the initial shock, my normal reaction would be to frantically use my left hand to clear the cob web as I ran to the next home. Sometimes, if Spidey worked hard enough on his creation, I’d feel like it was still lingering on my face minutes, or even hours later.
Fast forward twenty years and MS is helping me relieve my youth. Like everything else, it will happen at any moment and last for a few seconds, minutes or more. The first time my face started tingling, I truly did think I had walked through a cobweb again and I was having flashbacks to my paperboy days. I can’t remember how long I spent, using my left hand, to clear something that didn’t exist away but I know eventually I got myself in front of a mirror …and there was my conclusion – I wasn’t wearing my fashionably underrated paperboy carrier and more importantly, there certainly weren’t any cobwebs to clear away. So that’s what I named it when I tell Angela about it; Cobweb Face (CF), because that’s the best way of describing it, essay explanation above notwithstanding. CF is the standard but other times it might be some facial tightening, which may or may not be related to numbness, but usually it is just the CF, and I pray that is how it remains. So, the bad news is I get random bouts of Cobweb Face but the good news is it always reminds me of being a paper boy – and that’s just fine with me.
Not everything is so fine with me. Last year, leg pain was pretty irregular. It would occur but not a whole lot and nothing that would completely hinder my mobility – and generally, it is confined to my left leg. As 2008 turned to Fall, the pain and uncomfortablemess steadily began to increase. I remember spending Thanksgiving at my parents and for the first time I gave in to Angela and let her wrap an ice pack around my left leg (well, at the time, it was frozen peas wrapped in a towel! But you get the point…) and it felt better. I can’t say it necessarily got rid of the pain but it did numb it, froze it, if you will. As the weeks went by, the ice pack (an actual one now) started to be used more regularly to offset my ailments.
Generally, it’s not just one thing, more of a combination. And it’s hard to accurately describe; part author error, part MS mystery. First, my left leg will feel wooden a lot…again, bear with me on the descriptions, but this is my mind on paper…I read a lot about how people with MS get “heavy limbs” and that makes sense but I also just feel like I’m not even walking on my leg, rather a hollow version of it. The pain now is constant. What was every once in awhile, to once a week or so progressed to daily by February. I can never keep my legs in one position for a long time, particularly, my left leg. This adds some excitement to two hour meetings at work, sleeping at night, or even just going out to lunch with my family. It still hasn’t hindered my walking but it has increased the difficulty of going up stairs and how quickly I move around. Extending my legs out, constantly stretching, putting my feet up – these have all become my daily solutions. It helps, at least for a 15 minute clip, and I’m a big fan of anything that works.
Standing Still in Santa Fe
Standing in one place has become my Kryptonite. The first time I really experienced this was last Summer, July 4th weekend. After going to The Mayo Clinic, Angela and I decided to take a few days to ourselves, somewhere far and away from doctors, hospitals and needles. We originally wanted to return to South Beach, as we had discussed in January, but we needed a location with a “lower profile”; so we settled on Santa Fe. We have many beautiful memories of our trip to Santa Fe, but it started with a bump in the road. Relative to Reagan or Dulles Airport, we’ve grown quite fond of flying through checking in at the airport in San Antonio. Maybe it was July 4th weekend, or maybe it was the American public realizing this would be there last vacation before Lehman Brothers collapsed and hysteria ensued, but Angela and I were treated to a very long wait to get through security. Standing in line wasn’t comfortable, but really, who does enjoy standing in line for extended periods of time? It was the next day, that MS reminded me of who is boss. I woke up the next morning and could barely move; I felt like all of my bones were sore, not just my legs. In addition to the soreness, my body was stiff all over. We’d originally had planned to go for a hike that first full day we were in New Mexico, but that was not to be. Instead, I again gave in to Angela’s recommendation and got my first massage. I can’t say it’s a card I’m excited to play a lot, but to be truthful, I felt like a million bucks when the massage was over.
MS Awareness Week continues tomorrow…where I’ll elaborate on my new work schedule and the steroid treatment I am currently taking.