Happy Happy Fun Facts

From the book
The First Year--Multiple Sclerosis
An Essential Guide for the Newly Diagnosed
by Margaret Blackstone

• There are about 400,000 people in the United States with Multiple Sclerosis
  
• About 2.5 million people in the world have Multpile Sclerosis
  
• Each week, more than 200 people throughout the world are newly diagnosed. Of all those who have been diagnosed:
  • 75% will remain ambulatory throughout their lifetime and will never need a wheelchair
    
  • 40% will not experience symptoms that are debilitating enough to limit their normal activity
    
  • 20% will experience a benign course of the disease, one that does little or nothing to disrupt their lives
    
• The life expectancy of MS patients has increased by more than ten years since the 1950s
  

Dwennimmen Gives You Wings!

I had an accomplishment this weekend that, as one who could (under the circumstances) be considered an underachiever, I am quite proud of. You see, several months ago I signed up to run the Get in Gear 10k, scheduled for April 25. With all that time to train, you would think I would have been ready to rock come start time on Saturday.

Not so much. I believe I ran a total of two times in as many months. That's where the underachiever part comes into play. However, given the ridiculous amounts of soccer I played this winter, I figured I would probably be okay anyway. So here's how it panned out...

I got to the start line, and heard nature's call--softly, from a distance. I looked over to the horizon--porta potties as far as eye could see. Bliss. Then I looked past the porta potties to the throng of people waiting patiently for an open outhouse. Ugh. There must have been 200 people standing around, legs crossed. With 10 minutes to go before the race started, I decided to ignore nature's call and give the race a go.

Nature is a fickle friend, however, and 1.5 miles into the 6.2 mile run, she was screaming and hollaring obscenities at me, all patience and subtlety cast aside. So when I spotted a lone porta potty just off the road on a path along the Mississippi river, I decided to stop. Evidently, I wasn't the only person with this idea. So I waited patiently at the back of the line, hopping from one foot to the other, watching the minutes tick away on my watch... one... two... five... ten...

More than 10 minutes later, I finally made it through the line, got my business taken care of, and was back on the path to Getting in Gear. The time wasted in line must have lit a fire under my bottom, and I kicked it into high gear. My average pace runs right around a 10 minute mile. The first mile out of the porta potty, I ran a 9:30. My next mile, the toughest mile on the course with a large uphill portion, I had a 9:15 split. I slowed down a little bit from there, but ran at under a 10 minute mile pace through the end of the race.

To make a long story short, I crossed the finish line at 1:08:52. In and of itself, this is one of the worst 10k times I have ever posted. However, if you factor in the ten plus minutes spent in the porta potty line, I finished in under an hour--a personal best for me. The lesson I'm taking from this experience is that wasting time in line for the bathroom makes me run faster.

Woot! Post Dwennimmen PB. Further evidence that my tattoo is magical.

Serendipity

The process of getting inked was slightly more complicated than anticipated. The first place I stopped looked at the simple, itty bitty little image I wanted etched onto my back, and and quoted me the equivalent of a car payment. With a serious case of sticker shock, I headed back to my car (which I decided to pay for in lieu of the tattoo), head hung low.

Serendipitously, I happened to park in front of a coffee shop with free wireless internet access. Since I hadn't been home from work yet, I still had my laptop in the car--so I switched it on and googled "tattoo" in Minneapolis. My search results included a little shop only a few blocks away--one that just happened to have an opening that evening. So I went in, checked out the shop, got a quote that was exactly half of the original quote, and made my appointment.

Turns out my speed bump on the road to getting inked was a good one--as the little shop I visited, otherwise known as The Ink Lab, was just given the title of Best Tattoo Parlor in the Twin Cities by City Pages magazine.

Guess I have my finger on the pulse of pop culture in the Twin Cities after all.

Managing the Ducks

In the wake of DxDay, I have felt like things were a little higgledy-piggledy (this synonym for "disorganized" brought to you by the thesaurus in my newly upgraded version of microsoft word) as noted in my previous entry. Over the past two days, I feel like I have taken some decent steps to get my proverbial ducks in a row—-and as such, am feeling much calmer heading into the weekend. Here are a few updates:

Tell me once, tell me twice
I did a little research online (and had a conversation with one of the employees at the Neurology specialty clinic), and found a doctor in my network who seems to have a good background with Multiple Sclerosis. I feel a little strange asking for a second opinion from the same clinic as Doctor MS, but I’m also reluctant to begin the treatment regimen without a second set of eyes reviewing my test results (particularly given the gray area—no pun intended—surrounding the correlation of my vision issues with my lesions). So I’m officially on the calendar for a second opinion the third week in May. I still have a little digging to do with regard to insurance coverage, in-network second opinions versus out-of-network consultations, etc. But for now at least I’m taking steps in a direction I’m comfortable with.

Shooting up
Doctor MS recommended that I begin the process of treatment with Rebif. I read up on the various options available to me, and I am feeling pretty comfortable with this as a treatment option. I will go into more detail about treatment in a later post, but the short story is that I have the Rebif on order, with scheduled delivery for mid-May. After I meet with Dr. Second Opinion (DSO), I’m scheduled to meet with my Needle Advisor (aka an RN who will educate me on the ins and outs--no pun intended--of self-administered injections) to launch me into my lifelong pharmaceutical follies.

Light reading
I ordered three books on the joys of MS, and they arrived earlier this week—the first is a guide to navigating the first year after being diagnosed with MS, the second is a list of FAQs for MS patients and their peeps, and the third is a book about nutrition and the impact of food choices on MS. True to form, I have read bits and pieces of each book, but have yet to devour any one of them in its entirety. By the glimpses I’ve gotten so far, I’m quite pleased with each of the books, and am anxious to take some time to read more this weekend. I am also looking forward to trying some of the recipes in the MS nutrition book. I hope to share some of the recipes (and my opinions of them) in future postings, but first I have to hone my mad cooking skilz (and identify stores that sell some of the less readily available grains, flours, and other ingredients that the book recommends).

With all of these issues falling into place (or at least into the general area of their places), I’m feeling like I have a pretty good handle on things, at least for now. Between that and the fabulous weather that has rolled into Minnesota, this has been a downright pleasant week.

Doubleya Tee Eff

Here’s the DL (down low, for those of you not familiar with my vernacular). They tell me I’ve got Multiple Sclerosis. In an ideal world, I receive this information, digest it, research treatment options, and begin the process of moving forward. This is how I like my scenarios—clear cut, uncomplicated.

But no. Doctor MS decided to mess up my scenario and throw me a curve ball. And now I’m faced with a whole new series of questions that I didn’t anticipate.

Physical Symptoms--Background

As I mentioned in a previous post, the symptoms that brought me in to see a doctor in the first place (waaay back in 2004) were based in my eyes.

Initially, I had sharp, shooting pains behind my left eye that came and went over time. They would only last a second or two, but they were pretty intense (enough to stop me in my tracks if I was walking, for example), and appeared periodically over varied intervals of time.

In February (or so) of 2009, the pains evolved to a dull, much more consistent ache (mainly painful when I strain to look in any direction), and vision impairment during activity. It was this evolution that led me down the path to the neurology department I’m currently frequenting. For the past 9 days, the vision impairment has progressed further to a constant issue (unchanged by activity, or so it seems).

This write-up provides a great description of many of the symptoms I have been experiencing, specifically the picture of what the visual impairment actually looks like through my eyes.

Discrepancy
The battery of tests I went through concluded that the MS diagnosis was positive based on an increased number of lesions in my brain (from a scan in 2005 to a scan a few weeks ago), and some rogue bands in my spinal fluid that are attacking healthy stuff (the internal conflict to be further explored in a future post).

However, the two tests designed to evaluate actual damage done to my eye(s) both showed that the nerves and brain transmissions were normal. First, the MRI showed that there was no visible damage to my ocular nerve. Second, the visual evoked potential test showed normal brain activity. Based on these findings, the doctor told me that he believes the symptoms in my eye may not be related to MS at all.

Ensuing Confusion
Perhaps this information should provide me with some relief. But it doesn’t. You see, if I can’t tie the issues I have been experiencing with my eyes to the MS, I’m faced with the following truths:

• Something is making it so I can’t see so good out of my left eye. If it’s not MS-related, than what the heck is it? I’m basically back to square one with the problems that sent me to the doctor in the first place, only now I have the added benefit of an autoimmune condition.
  
  
• I was diagnosed with, and am about to start treatment for, a disease for which I have had no physical symptoms. As such, I am about to embark on a lifelong journey of injections and possible side-effects (explained in greater detail in a future post) to treat a disease that has evidently provided no physical inconveniences to date. Bummer.

I’m not convinced that the MS is not the contributing factor to my eye symptoms. In fact, I'm skeptical. So I am in the process of finding a second provider to review my test results, and discuss my symptoms, to get some additional perspective (and to find out if there is something completely unrelated that needs to be addressed in my eye).

So that, in a nutshell, is my current situation. Hopefully there will be much more to share in the coming weeks.

The Lighter side of Visual Tweaking (aka: My Lesions Have a Sense of Humor)

Earlier today, I was reading the literature accompanying my prescription for non-steroidal anti-inflammatory (for the eye pain), and I noted a strange statement (in very small print, might I add):

CONTACT YOUR DOCTOR IMMEDIATELY if you experience sudden severe headache, vomiting, dizziness, or farting.

You can’t make this stuff up…

Note: Upon further review, I realized that the literature did indeed say “fainting,” not “farting." I blame this visual inaccuracy entirely on my lesions. With a sense of humor like this, I think the lesions and I are going to get along just fine.

Tuesday was a long day.

I have seen several studies, including this one, that give Tuesdays the illustrious designation of Most Productive Day of the Week. For the most part, I have to say that I agree. Take this Tuesday, for example.

I went into my office in the morning, where I had several meetings to determine marketing material needs for an internal client. Then I had lunch. Then I went to my Neurologist’s office, where my diagnosis for Multiple Sclerosis was clinically confirmed. Then, on my way home, I stopped and got myself a lovely tattoo.

To be fair, I don’t know if this example technically supports the theory that Tuesdays are the Most Productive Day of the Week. Generally speaking, I rarely get disease diagnoses OR tattoos on Tuesdays. But meetings—THOSE I have darn near every week!

I digress… and realize there may be some questions the previous paragraphs may have generated. So I’ll expand a bit (in the order I anticipate the questions would arise)…

Diagnosis
The MS diagnosis came on the heels of several years of symptoms, a well-intentioned-but-not-entirely-on-the-mark diagnosis of chronic maxillary sinusitis, a change in healthcare providers, and much medical testing. Specifically, my symptoms started as sharp shooting pains behind my eyes (the symptoms date back to sometime in 2004-2005), and evolved over the past few months into partial vision loss in my left eye during intense physical activity (soccer games, for example). Finally, over the past few days, the vision issues have evolved further to general pandemonium (physical activity or no physical activity) in my left eye. I can see alright, but it looks like someone has been seriously messing with my brightness and contrast knobs.

Of course, nothing is as simple as saying “here’s why you have these issues with your peepers, and here’s what you can do to fix them.” So a day that I envisioned bringing me closure and solutions really just opened a floodgate of new questions. More on that in a later post…

Tattoo
I have known for a couple of weeks that there was a good chance this diagnosis was coming. So I made plans for myself for DxDay (diagnosis day) to keep it fun and exciting. I tried to think of something that I never would have done otherwise… and the obvious answer? Get a freakin’ tattoo. The image I chose was a Dwennimmen, a West African symbol representing strength and humility. Knowing that MS affects everyone differently, I have no idea what to expect—physically, visually, or otherwise. Because physical strength is inextricably woven into the fabric of who I am (I likes to stay active), I wanted to give myself a permanent reminder of how strong I am today, and that I also have the mental and emotional strength to integrate MS into my life—whatever that ends up looking like in the future.

Lunch
For lunch I had a delicious frozen entree (oxymoron?) of Thai Style Chicken & Rice Noodles. Delish.

Meetings
C'mon... really?