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!

Thursday, March 5, 2009

The Many Faces of MS

It has been quite the week but I am excited to report that I am officially done with my first steroid treatment. I had high hopes to complete my Part II of February 2009 but I’ll need to delay it by a day or two – so I apologize in advance…but I still would like to make a blog entry tonight, it just won’t be all about me.

And honestly, this is exactly what I need. It has been therapeutic to write about my experience, my current health…to be able to put all of my thoughts down on paper has been an incredible experience, encompassing every kind of possible emotion.

My first note to you all, I mentioned that it has always been very hard to talk about myself and I’ve had to challenge myself to step outside of this comfort zone to be able to communicate about my journey.

But if talking about me has been a difficult change, asking to be sponsored in the MS Walk has been excruciating. I really can’t pinpoint why, either. I’m not sure if it is independent streak that is uncomfortable with the concept of asking others to help me; I mean, we all got problems…maybe mine is a little more unique and challenging but this isn’t a contest – this is life. Or maybe it’s because asking for your help to sponsor me, to read my story, to spread the word…well - that seals it: I got MS. This isn’t a dream, this isn’t a school project…there is no waking up tomorrow and not taking my daily shot and there isn’t a final exam that will mark the end of the semester.

But what I want to communicate to you tonight isn’t that I’m into inflicting pain or mental trauma onto myself – I don’t write, educate and raise money for MS because of me. I do it for all of us.

2.5 million and the millions and millions of friends and families - such as yourselves – who have friends, sons, daughters, cousins, husbands…the list goes on – that are affected by this disease every day.

So, in the spirit of MS “Awareness” Week, I’d like to share with you a few videos about MS. There are millions out there but I picked out four that resonated with me; which I hope will explain my passion to rid the world of this disease (and I apologize in advance for not figuring out how to get the hyperlinks to work, but please do check them out when you have a moment...)


MS 101

“Saboteur”

http://www.youtube.com/watch?v=WJFa8uJqOUU&feature=related

This one minute commercial almost has a Lost-esque feel to it but it will all come together at the end – be sure to pay close attention…


“Join the MS Movement”

http://www.youtube.com/watch?v=UIBbgWabzUw&feature=related

What I enjoy most about this video, created by the National MS Society, is how it shows a wide variety of individuals with MS…young, old, female, male, fathers, mothers – and has some medical professionals that share a lot of good information on the disease.


Personal Stories

“Tricia’s Story”

http://www.youtube.com/watch?v=Cy004eeHTLw&feature=related

The primary focus of this video is on Tricia Chandler, she was diagnosed with MS when she was 24 years old, a mother of a nine month old at the time. She will share with you many of the symptoms that she faces and what her dreams of the future are – which are similar to many of us with MS, especially for those of us that are parents.

“Channing”

http://www.youtube.com/watch?v=ChUgZcrcsU0

I wanted to share two personal stories and preferably I wanted the second one to be about a male, to represent someone similar to myself because one challenge of being a 32 year old male that is about to become a father of two is that…well, people would never think you have MS. I’m not the typical face. Well, neither is Channing. She is a female, but she was diagnosed when she was 17 – again, not the expected face of MS. Her story has other parallels to mine, she also has taken steroids for treatment and if you look close enough you’ll see her use the Auto Injector to give herself a shot of Copaxone. Mixed in with the story on Channing (done by a local TV station), is a very informational chalkboard.


My MS Walk Team

http://main.nationalmssociety.org/goto/comfortablynumb

Wednesday, March 4, 2009

My NBA Debut & More

I’ll return with Part II of my current health and treatment tomorrow night but tonight I wanted to share some fun news and talk about our MS Walk team name.

MS Night at the Spurs

Friday night, March 6th, the MS Society invited me to attend the San Antonio Spurs game, as an MS Ambassador. I’m not 100% positive why I was chosen to be an Ambassador but I suspect it is because my MS Walk team is currently in the Top 10 for donations raised for the MS Walk on Saturday…so this recognition, I owe to EACH ONE OF YOU!

The Spurs, 4-time NBA Champions (3 times since we moved to Texas …cough, cough) - as fate would have it - will be playing the Washington Wizards. At halftime, Angela and I will be invited onto the court (with the other Ambassadors and significant others) and at that time, the Spurs will display our MS Awareness Logo on the scoreboard and broadcast a 20-second announcement to bring awareness to the disease. Everyone will then be asked to stand or sit still for 30 seconds, to convey the message “MS stops people from moving”. We will also be provided with MS Awareness Week t-shirts to wear during the half-time ceremony.

Why Comfortably Numb?

Some of you asked about our team name, Comfortably Numb. I’ve always been a big fan of is Pink Floyd – in fact, for our anniversary in October, Angela got us tickets to a Pink Floyd concert…conducted by the San Antonio symphony!

http://www.sasymphony.org/index3.php?eventIdD=41

Typically, I’m partial to the less commercial/mainstream songs of any band, but most of Comfortably Numb’s words – one of Pink Floyd’s most famous songs - really hit home:

Now I got that feeling once again.
I can’t explain, you would not understand.
This is not how I am.
I have become comfortably numb.


I think it is pretty self-explanatory why this part of the song speaks to me. And then, at the start of the second part of the song:

Ok.
Just a little pinprick. [ping]
There’ll be no more --aaaaaahhhhh!
But you may feel a little sick.


This verse speaks to me each night I take my daily injection. Each and every night. For those of you unfamiliar with Pink Floyd or this song, here is a link:

http://www.youtube.com/watch?v=sTFX0nxpo7Y&feature=related

(FYI – if you’d prefer, fast forward to just about 1 minute and 38 seconds and then at the 2:24 mark of the song…)

There was no correlation to multiple sclerosis when the song was written but, Michael Kamen, who did the orchestral arrangements for Comfortably Numb (and the album it was released with, “The Wall”) was, later in his life, diagnosed with multiple sclerosis.

There’s nothing comfortable about living with multiple sclerosis, far from it. But, I’ve said it before and I’ll say it again – this is my life now and I’m not running away from anything – and staying active, living healthy and most of all, staying in good spirits about my situation, will go a long way to aid my fight.

Tuesday, March 3, 2009

What The February?!?

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.

"Coming Up…"

MS Awareness Week continues tomorrow…where I’ll elaborate on my new work schedule and the steroid treatment I am currently taking.

Sunday, February 22, 2009

February - April, 2008: What Brought Me To The Mayo Clinic

It was about a year ago today that it started. I equate the years before February 2008 as the “pre-season” MS years. For example, in the NFL pre-season, fans still get charged the full price but it’s just not the same quality and level of competition that you get in the regular season. The head pains, sweats, stomach ailments, occasional loss of balance and so on – that was just the 2nd string playing on behalf of my MS. I had been taking my horse pills, I mean Pentasa, for a few
months and hoping that we were onto a new chapter in our lives. It turns out I was right, just not how I thought.

Angela and I went to Miami shortly after New Year’s to see Virginia Tech play against Kansas in the Orange Bowl. The Hokies lost (Kansas of course, cheated, at least that is how I remember it) but we had a blast meeting up with the Allard’s (sans kiddos and emergency room visits on this trip) and reuniting with some old high school and college friends. We had never been to South Beach before and enjoyed ourselves so much that we even started thinking about a return visit later in the year. After returning back home, Angela and I got pretty sick. It was probably from the traveling and preceding weeks during Christmas, Vincent’s Birthday and the New Year that kept us fairly busy. I think our bodies were saying “enough” and that they needed a break. After a few weeks, though, I was still surprised that I didn’t feel so well. At this point, I didn’t have a fever but just a lot of sinus pressure – I assumed it was a sinus headache. I can’t even remember if it was bad enough where I was taking medicine for it, but after over a week of this dull pain – which was confined to the right side of my face, predominantly my eye – I mentioned it to Angela and she agreed that something didn’t seem right.

It wasn’t high on my to-do list to make a doctor appointment with my primary care physician for yet another headache/eye related issue. But as the pain entered its second week and gradually started to increase, the red flag started waving. Soon, other issues emerged. My vision seemed a little slower. Almost as if I had drunk one too many alcoholic beverages…the room was slowed down a little bit. I began having problems with my peripheral vision and it started to hurt to look out of the corner of my eye. This was quite the sinus headache, I thought! As with most of my preceding symptoms, I just adapted to it. In meetings at work, I would intentionally choose seats that would limit the amount of peripheral vision that was required. And when necessary, I would literally turn a full ninety degrees in my seat to the side to speak with the individual straight on. Walking the halls at work became an odyssey, hearing my name, but not sure who was saying what, often I felt like I was in a Twilight Zone movie and it would only get worse.

One morning, as I was getting ready for work, it became unbearable to shave. I couldn’t stare into the mirror as I shaved my face without causing a severe pain in my eye. This was too much. I went downstairs and started doing some research and wasn’t surprised to learn that Crohn’s disease, which is an inflammatory disease of the digestive system, also manifests itself in other places on the body – including the eye. And there went the light bulb in my head. What started off as a slight sinus headache had progressed to impacting my vision and now I had something to tie it to Crohn’s. I called my GI doctor and he agreed that it could be related to Crohn’s and referred me to see an ophthalmologist right away – eye issues are not something you take lightly. My GI doctor get me an appointment with her that morning.

Within a few minutes she ruled out the problems I was having as Crohn’s related – my eyes weren’t red and no inflammation appeared to exist. After an exam, she referred me to go for a CT Scan and let me know that I either had an issue with my sinuses or my brain. Unfortunately, this is how a lot of my doctor appointments had proceeded over the years, particularly with my head pains. Generally, I was referred for a CT Scan (looking for tumors became way too common) and I’d go and have it done, head home, wait a few days for the results and then after they returned negative, wake up the next day and move on. So even when she painted those two options, one of which was just horrible to think about – although I do believe she laid the odds as 80% sinus related – I think I had become so desensitized, it was just a normal part of living my life. She did make mention that she’d prefer I have an MRI done, but out of fear of my insurance not covering it, we should just go with the CT Scan. This would prove to be a pivotal decision.

Over time, it became a bit comical (read: dark humor) calling for the results of my tests. When somebody is having a test done to determine if they have a tumor or other highly sensitive health issues, they generally want to know the prognosis from their doctor sooner rather than later. Maybe I’ve just succumbed to the internet generation, and I’d like to be able to log-in to my medical page and see the continuous and instantaneous status of where my x-rays/tests results are, have they been reviewed – things like that. Instead, I (with a lot of help from Angela) usually have to be proactive with multiple phone calls, waiting on hold, listening to the person on the other line shuffle through some paper, “um, how do you spell your last name again…hmm, don’t see anything, let me put you on hold...”, tick…tock…tick…tock, “um, Mr. Wentnickling? We got your results and it looks like they are negative. Would you like to schedule a follow-up?” I don’t recall exactly how things worked out with ophthalmologist – I do know that it was a much more pleasant experience than usual – but the diagnosis was the same; negative on both counts.

So there I was with my eye doctor at another dead end. She prescribed me an oral steroid to ease the pain and set up a follow-up appointment in a week. The steroid eased the pain immediately but my vision problems persisted and expanded. I started getting “floaters”, as I would learn they were medically called, but not your run-of-the-mill kind – they were multiple, constant and at one point, it appeared that a curtain was falling. It sounds insane and trust me, it was – but seriously, a curtain being lowered is the most accurate way to describe it. Blurred and double vision was always part of the package but originally I just assumed that was related to the pain. I rarely have any of these issues anymore. Occasionally, I get a sharp pain in my right eye (always the right eye) – you know when somebody says “I’d rather stick an ice pick in my eye”, well that’s what it feels like. The only other symptom that persists to this day are the bright lights. It’s only in a dark room, or walking around my house at night. Out of the corner of my right eye, I get flashing lights – think of a strobe light. I remember a few months ago at a follow-up with my doctor talking about the “strobe light” and unbelievably to me, I learned this might just be something that will be with me for awhile. It’s really the least of my problems right now, and if anything, is kind of entertaining.

During my follow-up after taking the steroid for a week, I was given my prognosis – optic neuritis (ON). As it turns out, ON is the most common symptom that occurs before somebody is diagnosed with multiple sclerosis. It was nice that I was able to finally attach an official name to one of my ailments and there was no ambiguity, further tests, anything. It’s funny, I remember one moment with my ophthalmologist….and I think about it a lot. I was sitting in her office after one of my follow-ups and she was doing some paper work, facing away from me. We were talking (almost joking) about all the issues I’ve had over the year – the “mystery” patient…and Mike “WebMD” Wentink came out and asked about multiple sclerosis. It was one of the various options Angela and I had looked into. I’d researched it and thought “wow, this sounds like me” and Angela had done the same. We’d never talked about it with each other, though – both of us didn’t want to stress the other one out – so we kept it to ourselves. So I took a shot with my eye doctor and this is the moment I replay in my head…she paused from writing, probably about 5-7 seconds, kept looking down at her notes, never looked up at me and then resumed writing. It was a long awkward pause and no response to my question followed. I took it as an irritation on her part, which I’m sure doctors feel a lot; a patient arming themselves with some wikipedia entry and thinking that qualifies them to put a medical certificate on their wall. But now as I look back, I think, was it actually an “Aha” moment? Probably not…but it sticks with me. The pain was gone but my vision problems continued for at least a few more weeks, it took a long time to get back to normal. I was very nervous, a lot of what I had read about ON mentioned permanent vision loss. One night, right before I went to bed, I told Angela how fearful I was of losing my vision and I told Angela “I’d rather lose my taste than my vision”.

The next morning I woke up, went downstairs and took my horse pills (4 of the 8 daily pills I was taking for Crohn’s) and as usual had a tall glass of water to wash it all down. But, something was off. I drank the water and I wasn’t satisfied – I just couldn’t quench my thirst. What was going on? I grabbed something to eat, and had my own “Aha” moment – my taste was muted. My taste wasn’t gone but it may as well been. Everything I ate had very little flavor, it’s as if somebody had taken a needle to all of my food and drained 80% of the taste out of it. My “Aha” moment that morning wasn’t that I had MS, but that this is getting serious and way beyond Crohn’s – I had a journal I had been keeping for my stomach problems, but that day started to expand to include everything that had previously or was currently ailing me. For the next few weeks, my muted taste continued; eventually I had a few days where everything I tasted was sour..as of today, my taste has returned to normal. I certainly learned my lesson, though, as cliché as it is - be very careful what you wish for!

Looking back, the weeks and months all blend together but this was around the time that my health began to truly unravel. The numbness and tingling intensified and I started getting what I later learned was vertigo. I remember one day vividly at the grocery store. I had just stopped by to pick up a few items but I felt like half of San Antonio was there, too. All the people, all the motion, I could barely stand up. I ran my cart into a table, into other people…I eventually just left. I felt like the store was spinning and I couldn’t maintain my balance. This would come and go over the next few weeks, some moments/hours/days worse than others. Not sure if it was the vertigo, vision problems, or just a combination of ailments that also led to a constant state of nausea. I had it before, that was part of my Crohn’s write-up, but this was constant. It reminded me of Angela in her first trimester of pregnancy, with crackers near the bedside, always needing a snack or something to get in my stomach to try to make the nausea go away. This remains even until today, thankfully it isn’t as constant and even better Angela found me some relief from a neat little product called Nauzene.

I was losing other faculties, too. Dropping things. Not fumbling around, being klutzy – this was different - I would literally be standing there one second holding something and the next second it would be on the ground and I didn’t know why. At work, from time to time – as a “stress reliever” – we’ll throw around a little nerf football. Professional QBs, we are not, but over time one becomes pretty apt at shooting the ball between cubicles, avoiding ceilings, sliding it through office doors…all while causing little to no damage. This story doesn’t end with me breaking anything; I never got the chance to. It was almost as if I didn’t have control of my throwing motion, my throw would basically go straight into the ground or something very close to that. MS isn’t only physical, it is also mental. At times, words would escape me. Nothing as minor as “dog” but certainly part of my regular vocabulary; regular enough for me to notice. Frequently, I’d be asking myself - why can’t I think of this word? I’d play $100,000 Pyramid a lot with Angela – giving hints and pseudo-direction until she solved my riddle. Words, names of people, places and so on at random times for no apparent reason. I’d learn to always have a thesaurus operating parallel in my mind while I talked with family, friends or co-workers – just waiting for it to occur again.

Clearly this was impacting my quality of life and, in my opinion, was well beyond Crohn’s. For me, losing my taste, really was the tipping point. I worried that I had been reading too many internet medical sites and was playing mind games with myself, creating the neurological issues I was having. But losing my taste? That’s not in my head, it is what it is. I had an appointment with my GI doctor and brought my list of recent ailments and told him that I might have Crohn’s, and that’s fine – but my biggest worry is that we are missing something. He agreed and suggested a second opinion and based on my ailments, I needed to go to the “mountain top”, so he wrote a letter of recommendation on my behalf to The Mayo Clinic. Hearing those words from him…communicating those words to Angela, was very difficult. It is one thing to joke about being a “mystery” to the medical community, but quite another to fly up to Rochester, Minnesota to be examined. A few days later we came home to message on our answering machine from The Mayo Clinic requesting a call back to set up the dates for my visit.

Sunday, February 1, 2009

Emergency Room Visit & Extended Stay At The Hospital

All I wanted was for the pain to stop. I wasn’t looking to solve any larger puzzles that night. I wanted relief, determine the source of the ache and then head back home. We had friends in town visiting and I was a little embarrassed that their vacation was being interrupted by a late night trip to the emergency room. Murphy’s Law usually results with our house breaking down when friends or family come visit. We’ve had the fire alarms go off (and it only happens at 3 a.m., naturally), the A/C unit bust (during the summer, naturally…Briggs and I went delirious in the heat waiting for the repairman), garage door breaking…the works – but only when people come and visit. It would be way too convenient for it to happen while nobody was here! But this was something new; a trip to the emergency room on a Friday night.

I’m fuzzy on the exact details but this is what I remember. Not surprisingly, there was a lot of waiting followed by a lot of tests. Chest x-ray, CT of my abdomen and pelvis, blood work – they did it all. It was three in the morning but I felt like I was in constant movement, being carted around from room to room. As we waited in the emergency room earlier in the morning, our patience and my pain threshold were tested and we both grew weary… Angela and I found humor, because that is all we had. We’ve never seen “Grey’s Anatomy” and often we feel like the only people in America that haven’t. So maybe it was ironic humor getting the best of us or just through plain delirium but as the clock ticked in the waiting room I started to joke with Angela “Is this how it is on Grey’s?” and then as I was being wheeled through the different corridors with Angela by my side I’d remark, “I feel like I’m on Grey’s”. Most of the staff at the hospital probably thought we were loons and it probably doesn’t make a lot of sense for most of you reading - but for Angela and I, it was something we could laugh about – just the two of us, our way of finding some kind of solace through all of the medical mysteries we had encountered. We’d do a lot more of this over the next year and a half.

The emergency room doctor was very nice but also very hurried. He was pretty swamped that night and here I was, just a normal looking guy with a stomach ache. The tests didn’t return anything remarkable but there were abnormalities, particularly my small intestine – some kind of fluid build- up. This, combined with my history of gastrointestinal issues led the ER doctor to the conclusion that I might have Crohn’s Disease or Ulcerative Colitis

What? What is that? Well, for starters - and at the time this is all that mattered to me – it was something I could use to explain all of the problems I had been having. I knew something was off and hopefully with this Crohn’s/UC thing I can take some “magic pill” and return to living a normal life again. My stomach and arm pain had subsided thanks to pain relief provided by the hospital so with this news I was ready to get home, see Vincent, spend the rest of the weekend with the Allard’s and start reading about these gastrointestinal diseases. The doctor recommended admitting me into the hospital for more tests to confirm Crohn’s or Colitis but with friends in town and a busy week of work ahead, I declined and decided to schedule the necessary tests later that week. I was leaving the hospital in pain but at least now I was a lot closer to a conclusion, could head home and see Vincent, crawl into my bed and finally get the IV removed from my arm.

The next day I was pretty limited with my movements and remained in bed for most of the day. The Allard’s took our car and did some touring of San Antonio on their own and at night Angela took them out for dinner. They left the next day to head back to North Carolina and I again took it very easy. I was feeling better, the sharp pain had become a dull ache and my left arm was feeling a lot better. I considered working from home on Monday just to ease myself back into the workweek but with future doctor’s appointments sure to follow I wanted to limit my time out of the office. That seemed like a pretty good idea at the time, anyway.

Monday morning came, and I don’t think I made it 3 hours at work. Relaxing at home with a wife that goes out of her way to make sure you are comfortable just isn’t the same as a Monday morning in Corporate America. In fact, the two could be viewed as polar opposites. I made it through my first meeting – long deep breaths, this wasn’t my first time navigating through pains, whether they resided in my stomach, head or otherwise. By the end of the hour two, I had to throw in the towel. I gave my manager the condensed version of my exciting weekend trip to the emergency room, called Angela and headed home. She had already called my parents to come watch Vincent and off we went to the hospital.

Angela spoke with the hospital ahead of time and the expectation was that we would be admitted immediately and we would begin scheduling the necessary tests. Unfortunately, it didn’t work out as smoothly as that. Instead, since the hospital was near capacity, we had to navigate again through the emergency room and re-live the same horrors from the other night. By now, I had lost count of the number of times I had told my story to various medical staff…all of the weird ailments, not sure of how they add up – and the best, trying to quantifying the pain I was feeling “on a scale of 1-10”. Still not sure what that even means. I’m a husband, father, full-time professional and part-time student so I’m not going to waste the hospital’s time, my family’s time, my job’s time and my time unless this pain is really messing with me. After almost an entire day of waiting, more tests (a full body scan this time) and another IV, I was finally admitted into the hospital.

Not surprisingly, over the past week I had been living with the night sweats again. I wasn’t sick – I felt great when Mark and Melissa arrived, but the sweats were still there each night to remind me that something was off. As the hours I spent at the hospital increased, the worse I began to feel. One of the reasons I never liked going to a hospital or doctor’s office is because each time you go, your chance of getting sick increases – from being around others that aren’t feeling well. And the odds finally caught up to me and it wasn’t long before I had come down with something. So now in addition to the pain, I started to feel like I was getting the flu. Soon my body temperature would catch up with how my body felt, and this would only prolong our stay at the hospital.

One lesson learned from our stay at the hospital was – if you are going to have a mysterious medical issue arise, try to avoid having it during the summer, when a lot of doctors and other medical staff are on vacation. We’d been at the hospital for almost two days before we met the hospitalist; he’d just returned from a trip to Vegas. We had better luck with my gastrointestinal (GI) doctor. It was well after dinnertime our first night in the hospital but by sheer luck and timing, we ended up meeting with one of the “Top Docs” in San Antonio – and for the first time, Angela and I felt like somebody was actually listening to us. Truly listening, he wasn’t in a hurry to get to the next patient, wasn’t quick to order and test and run – he wanted to know my complete history and understand all of the issues I had been facing.

After talking through my ailments, he recommended an upper endoscopy which they scheduled the next day. I won’t go into the details about the procedure and I was knocked out, anyway – or at least with the sedative it felt that way – but I woke up later with Angela by my side and talking with my GI doctor. He had discovered some inflammation in my lower intestine which would potentially confirm Crohn’s. Unfortunately, Crohn’s is similar to MS, in that there are no easy tests to figure out what you have. This was just the first step.

The endoscopy was on my second day in the hospital. Up until this time, I’d been pretty lucky the first three decades of my life. I had some bumps and bruises along the way but I’d avoided broken bones and never had any overnight stays. So the first few nights were rough. I was sharing a room with another individual who, among other ailments, had a continuous cough that made the hairs on the back of my neck stand up each time I heard it. This is my blog about MS, not a Stephen King novel, so I will just leave the details at that. Angela reminds me of many other details of this horror story but I will spare anyone who happens to be reading this…feel free to ask her about it sometime, she’ll have a great time filling you in on the details! Almost as bad and maybe worse than his blood curdling cough was that he had his TV on all night. Never turned off, or if it did I was either passed out or dreaming it was still on. And it was the same channel, all day and night – showing re-run after re-run of Law & Order. Yet another popular TV show that I’ve never seen and promise you that I now never will. If I see it on TV I have to turn away and leave the room, the opening “dun dun” was a fixture in my mind for days to come.

Angela arrived the second morning and my health had by then greatly deteriorated. I was now running a high fever, had multiple bouts of sweats, loss of appetite and only felt that I was getting worse. I shared my first tip on not hitting up the hospital for an extended stay during the summer and here is my second tip, which is just as important. Try to have somebody there by your side that will be your biggest advocate. I was feeling progressively worse and was in no condition to have a rational conversation with the medical staff and the moment Angela saw me in that condition, she grabbed everyone’s ear she could find to get me a private room. They couldn’t even finish telling Angela how much extra it would cost before she agreed – just get me in a private room.

I have no idea if I picked something up from my “roommate”, or the lack of sleep contributed to my declining health but by the time I got to my private room the medical staff was very concerned with my rising fever and overall state of health. Due to the nature of the procedure, they wanted to rule out any chance that I had picked up an infection. So the next few days I was confined to my hospital bed, watching TV, reading, sleeping…a few times I found the energy to get up and walk the floor.

The nights all kind of run together now, but they were the worst. Being with my “Law & Order” friend was bad enough but even when I had my private room I still had plenty of visitors during the night to take blood and more – I even had an ultrasound! They’d knock twice and then open the door…this really wore me down. By the fourth day, Angela and I couldn’t take it anymore. We had been requesting to check out and hadn’t been successful. I never knew that I’d have to work so hard to get out of a hospital! I don’t know what I would have done without Angela; I think I’d still be on that hospital bed. Again, she was borrowing the ear of everyone she could find. We didn’t know a lot more than when I was admitted. Apparently I might have Crohn’s but my pains had mostly gone away and my fever subsided so we were anxious to just get home.

By October, the diagnosis was Crohn’s and in my mind that explained a lot of the mysteries that we had encountered over the years. I read quite a bit about it, educating myself to explain it to others. I went back to work, went back to my normal life of being a father, husband, professional and student. I would meet with my GI doctor frequently as we attempted to verify the original diagnosis. I had a variety of tests, some of which…well, let’s just say I saw the future and I’m not looking forward to entering my 50s. Unfortunately, I got to experience this annual screening test about twenty years early. I also had some unique experiences; in one procedure, a capsule endoscopy, I swallowed what is basically a miniature camera and it recorded images throughout my digestive tract that was being recorded on a CD, which was attached to me in an overall-esque outfit. Yes, I took the day off work for that one!



(Looking good, Wentink! Angela never got to personally witness me in this contraption so I had to capture the moment - why give jewelry for our next anniversary when I can just frame this picture!?)


Nothing ever came back that said, yes it is definitely Crohn’s, and it doesn’t work like that, anyway. The pain in my abdomen continued but it was bearable now and living with it just became part of my daily routine. Eventually, I started taking medicine for Crohn’s – of course, it wasn’t the “magic pill” that I was hoping for. It was a pill. But eight of them…and they were huge! I took four in the morning and four at night and I could drink a gallon of water and it wouldn’t have made it any less uncomfortable to get them down. I was desperately looking for answers and wanted to move on so if this is what it took, then bring it on. The pain wasn’t as constant so there was hope that the treatment was working. The holidays came and then we began 2008 cautiously optimistic that most of my medical mysteries had been solved so I could spend more time with my family and friends and much less time being poked and prodded.

Tuesday, January 13, 2009

A Little Background First...

Before I start, a few comments on this post, my previous one and any future entries. First, MS is different for everyone. What I write is about myself, another person could experience the same symptom and it might impact them in a completely different way. If I refer to something as a nuisance, it could be debilitating for somebody else with MS. So, my intention is never to minimize the effects of MS, or vice-versa – to maximize my episodes for glorification or sympathy. This is my story and is intended to only be viewed through my eyes. I am very sensitive about this issue. I’m under no illusion that compared with many others sufferers of MS, I am very fortunate. And I do not wish to whistle past others, talking about how annoying it is that my leg tingles a lot like it has fallen asleep, when for somebody else that same feeling has a debilitating result. That is the reality of MS – you never know what each new day will bring…today’s nuisance could be gone tomorrow, or could worsen and alter my lifestyle completely.

Additionally, much of my symptoms so far have been and continue to be of the “silent” variety. This is common for many individuals with MS. To the public, we appear normal without any noticeable ailments; however, inside we are suffering from chronic fatigue, muscle weakness/spasms, abnormal sensations, vertigo and vision problems, to name a few.

I’m not a doctor. When I discuss clinical issues, it’s coming from an Accounting undergrad that never attended a day of medical school and in college got a C in Biology. And – this is very important to me – although I’ve had a lot of frustrations during my journey to diagnosis, my blog is in no way is intended to disrespect the medical community. Most of the doctors I have interacted with I hold the highest degree of respect for and am very gracious for their time. Not all of my interactions were pleasant, but go visit with any profession (especially with the frequency that I do with the medical community) – CPAs, Lawyer, Teachers – you’ll have some good experiences, you’ll have some bad. The reality is, a long and sometimes painful journey to an MS diagnosis is the general rule, and not the exception. You don’t have to look very far to hear very similar stories to mine; and I encourage everyone to do so.

That’s my quick soapbox – but there is one more point that deserves its own section. Most of what I write is strictly through my point of view. The terms “I” and other individual references are thrown around a lot. This writing style is part literary laziness and part an effort to streamline and simplify the reader’s experience. But something I have to make absolutely clear is that this is not a Mike Wentink journey. The support of my family and friends has been tremendous. Every email, phone call, text – whatever the communication medium – is greatly appreciated. My parents moving to Texas from Northern Virginia , at the time that they did, was a miracle in disguise. Angela has been with me every step of the way, often the tour guide, and it is her strength – not mine – that carries me each new day.

And now, on to the main feature…

It’s hard to know when it started. That’s one of the most frustrating things about MS; what is unknown greatly outweighs the known. The answers to how, what, when and where are mostly blank, yet to be filled in by medical research. As much as science has advanced in recent years to increase our understanding and improve treatment of MS, basic questions like “how did I develop this disease” and “what does my future hold” are unclear, at best. There are dozens of potential symptoms with wide-ranging individual impacts, from irritating to debilitating.

A few years ago, probably around 2005, I woke up and my toes were tingling – almost as if my feet were asleep. Didn’t really think much of it, but then about a week later it continued. It wouldn’t last long, sometimes a half hour, sometimes a few hours as my feet maintained this constant sense of tingling. It should have raised more flags than it did, but after several years of other random issues and symptoms, “mysteries”, as most of my doctors would refer to them, having something like this happen had become pretty standard.

What followed was generally the same each time…an issue would arise, I’d ignore it, then finally tell Angela, set up a doctors appointment, notes would be written, maybe some tests would be performed, wait a few days for results and then the circle would start again. Nothing would ever be resolved and the results would always be inconclusive. At some point, I just rationalized that stress with my job, and then with grad school, contributed to most issues. This made my issues even more difficult to confront. It’s hard to be a successful individual, husband and soon to be father when I can’t handle the stress of day to day life. I didn’t want Angela to view me as a complainer, or somebody that couldn’t handle the pain, so I just ignored a lot of what was going on. I truly thought everything was just part of life. “Growing pains”. My mental mind tricks were usually reinforced by doctors that followed this line of questioning during appointments:

1. Are you allergic to any medication?
a. No (check)
2. Have you recently lost a lot of weight?
a. No (check)
3. Have you been violently ill; vomiting, falling unconscious, etc.
a. No (check)

Ok, well, you are a 20-something healthy male who doesn’t smoke, take drugs, stays relatively active and eats moderately well, so….we got nothing. Come back when your eyes are bleeding or you weigh 120 pounds.

Although I’m adding a bit of humor, this is truly how Angela and I felt. I reached a point that I just didn’t want to bother anymore. It was wasting my time, Angela’s time, the doctor’s time and only adding stress, so it was just easier to adjust and/or ignore what was happening to my body.

Before we went to The Mayo Clinic, we requested all of my medical records going as far back as 1998. It was quite the walk down memory lane. I was astonished to see the various CAT scans, blood tests and more that resulted from doctor’s appointments. Even after reviewing over my medical records, I can’t tell you the exact order, or every ailment, but I do know that “cluster headaches” was one of the first mysteries Angela and I battled. I say cluster headaches, because that is the almost default prognosis that was made. It’s likely that this was the start of my MS, or at least one of the first symptoms.

It would occur out of nowhere; morning, day or night and at work, out with friends or at home. A sharp pain would jolt the right side of my head. By sharp, it would at least temporarily daze me, I’d lose my concentration and my reflex would be to lower my head into my hands hoping that gripping my upper forehead would help lessen the pain. Sometimes these would last for just a few seconds, maybe a little longer. This pain equal opportunity; interrupting conversations with friends, work discussions, Redskin games – it didn’t matter, my only solution was to absorb the pain, act normal and move on. For a time, it was pretty consistent – maybe not every day but probably a few times a week. Not enough to warrant any immediate trips to the doctor, but frequent enough to raise at least a flag. CAT Scans and MRIs would always come back negative.

The plural form of the tests was intentional. If I ever got a break from the headaches then something else would pop up. One day I was reading at home and began having issues with my vision. The words on the page would all start to blur together, letters reversing, on top of each other and I would get something - and this is the best way I could describe it to Angela and doctors – “kaleidoscope” vision. It was as if I was looking through a kaleidoscope, multiple colors would take form and everything I looked at would appear to be through the prism of a kaleidoscope. At work, I’d excuse myself to the restroom where I’d splash water on my face, rest my eyes and hope that upon returning to the meeting all would be normal. Eventually, this led to another doctor’s appointment, more tests and the same result – no conclusion. Cluster headaches, migraines, stress – who knows. Deep down inside I couldn’t buy it. I had no more stress than the next person although I’ve always had a lot on my plate; personal, career, continuing education…but so do most people and I have the luxury of a loving wife, beautiful home and peaceful life.

The doctor’s visits weren’t just about headaches and vision problems. Over the years, I’d have a variety of symptoms – some more common than others, and some that had nothing to do with MS…and others that probably did. I went through an extended period of night sweats. When somebody has the flu, night sweats might be a common ailment. But there would be no influenza attached, I’d be in perfect health, feeling great when I went to bed – and I’d wake up in a pile of sweat. Sometimes multiple occurrences during the night; but like my other symptoms it almost became routine for Angela and I. We’d have the towels ready. I’d go through two or three outfits during any given night and then the next day I’d wake up and go back to living the American dream. At one point, it was so regular that I wouldn’t even remember it happening – it’s like brushing your teeth in the morning or the commute into work, it just became second nature. Angela would shoot me an email during the day asking me how I’d felt…and if I remembered the previous night. It would take a few comments from her to jar my memory – oh yes, now I remember I sweated through our sheets again last night, for no apparent reason. Of course, the only conclusion was like everything else – maybe stress, maybe this…or that, but for now – a mystery.

At first, moving to Texas seemed to help my ailments. Not sure if it was the new climate, surroundings and culture keeping us busy but for awhile the head pains and night sweats went away. But soon, various things would start to pop up again; I’d never feel “normal” for long. The tingling started off in my toes but soon moved to my fingers, mostly my finger tips. Sometimes I’d wake up with a tingling sensation, or it would occur randomly throughout the day. Often, while taking a hot shower, I’d almost have no feeling in my right hand. On various occasions, I’d stand in the shower running the hot water on my right hand and then switch to my left and then back to my right again. I thought I was going crazy, at the time I had no idea what this meant.

One issue that has plagued me, at least since college is a very weak stomach. To this day, I’m not sure what is or isn’t related to MS – but one thing I do know, the gastrointestinal issues that I did face started me down the long and winding road to my MS diagnosis. So, in a (very) small way I am thankful for the years of agonizing stomach related issues. All anyone needs (and more importantly, WANTS) to know is that I had some pretty severe gastro issues dating back to the late 90s. Certain foods – especially richer, and higher in fat, would produce undesired results. I’d eventually steer away from anything with cream sauces, swore off milk, started drinking lighter beers and in general stuck to a pretty bland diet. Friends would think I was on a constant health food kick, including frequent discussions on the merits of light beer – but although trying to be healthy was important to me, that was a secondary objective. My primary goal was to avoid being curled up in a fetal position later that day or night suffering in agony as my stomach twisted and turned, which also included all of the gastro bells and whistles you can imagine. I’d always be amazed watching others enjoying rich meals, wondering if they faced the same problems I did…as usual, I just thought that they just handled the pain, the gastro problems and other various ailments tougher than I did. You only know what your body knows, and for me having these stomach problems had become the norm – so I just assumed this is how life was. As I opened up more to Angela about these problems and started to shed light on my ailments, she began to push me to look into them. As usual, I was hesitant. I didn’t want to make another doctors appointment, with additional tests and the same results – a big question mark. I already had shooting head pains, tingling toes and fingers and almost needed to build the mental stamina to add wide-ranging gastrointestinal issues to the list.

Since about 2006, I started noticing changes in my balance and coordination. I would never be mistaken for an Olympian, so to people that may have been playing sports with me; they were probably none the wiser. But I knew something was off. Maybe I was getting older. At least that’s what I told myself. But I would fall over a lot easier, I’d find it quite amazing – it was like I had no control of my bodily movements. And then one time I was out running in my neighborhood, just a leisurely jog and out of nowhere my left leg gave out. I was able to continue running but for a moment I lost all muscle control in my leg. It happened again. And again. I was going to grad school at the time, while working full-time so I was keeping some pretty long hours and sleep was pretty minimal. So I told myself I was just tired. Getting old. Not getting enough sleep. I would even try a little experiment. I’d make sure that I got plenty of sleep the night before a day I knew that I’d be playing some basketball at work. This would be the difference, I thought. Well, I felt a lot more refreshed and probably showed a little bit more energy out there on the court but my coordination and balance were still off. Nothing like I’d experience during the first few months of 2008 but it was again a few early warning signs. My loss of balance wasn’t specific to playing sports or jogging in my neighborhood – in another example of missed red flags, I became proficient at falling down stairs. It occurred a few times at work, even one time I feel up the stairs. On a few occasions this even happened at home. No major injuries ever resulted…maybe some bumps and bruises, and quite a bit of razzing from the people I worked with – and then I would resume my day, just like any other.

In the summer of 2007, my friend Mark, his wife Melissa and their son Jack came and visited us in San Antonio. Mark and I had known each other from high school and now here we were – the both of us professionals, husbands and fathers – we’d come a long way! Their son Jack was about seven months older than Vincent who was a little over a half year old. During the day we enjoyed watching the two boys interact with each other and the second night they were in town we decided to be brave, get a babysitter and go enjoy a nice dinner and a few drinks. After returning home, Angela and Melissa went upstairs to get some sleep while Mark and I stayed downstairs to catch up some more and enjoy a few more drinks. On the car ride home I had started to notice a dull pain in my left abdomen section and this continued up to the point that Mark poured us both a fresh drink. Slowly, the pain started increasing. I’d had similar pains before, so I started taking long, deep breaths, hoping and thinking the pain would go away. Soon, I started getting sharp pains down my left arm. And the increasing pain in my abdomen had become unbearable. I can’t remember exactly what Mark and I were talking about, maybe how this was the year the Redskins were going to win the Super Bowl again, but I had to fess up and let him know the discomfort I was in. What happened next is a product of the 21st century. Mark and I went into my office and started searching on WebMD for a solution to my ailments. I didn’t think I was having a heart attack, the pain was in my abdomen, but the shooting pains in my left arm – what was that all about? Was I having a stroke? We read about a variety of possibilities until we came across something about the spleen. That’s got to be it, I thought. I had Mono when I was in high school and maybe my spleen never recovered, was failing, who knows. By this time I was curled up on the ground of my office in severe pain. I told Mark that he had to wake up Angela; I think I need to go to the hospital.

And so began my almost week long odyssey to solve this mystery abdominal pain...

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