My Dwennimmen

Gadzooks

2011-04-14T22:08:00.001-07:00

Although I did not realize it had come and gone until 11:59pm, April 14 was my second tattaversary! Jeepers, how time flies. It has been at least six months since my last post, and well over a year since my last relapse.

Life is good.

Amazing

2010-09-28T18:32:00.000-07:00

A phenomenal story and video from Dave Bexfield from Active MSers, one of my favorite MS-related blogs. His story is amazing--and full of hope. Enjoy.

Checking in

2010-08-30T20:05:00.000-07:00

Yikes... has it really been almost 2 months since my last post?! Where has the summer gone???

Clearly it has been a busy one, so I'll fill you in on the highlights:

1. I have spent some quality time at the family farm this Summer--loads of fun, but it has resulted in an influx of giant woodticks on my dogs. I also got to spend a bunch of time with my niece and nephew (unrelated to the woodtick tangent, but definitely related to the farm), who are the smartest and cutest kids in the whole wide world. For real.
2. The garden has been successful, for the most part, and with a large stock of supplementary veggies from mom and dad's farm yield, I have eaten cucumbers and/or tomatoes in some form for as many days as I can remember. The sheer quantity of delicious veggies prompted me to buy a freezer, which is filling quickly with fresh tomato sauces, tomato basil soup, cucumber soup, zucchini muffins, and a handful of other delicious summertime treats. Coming soon: my fall favorite--chili, which will be made this year from the many platters of tomatoes currently filling my counters and windowsills.
3. Soccer continues--not much new there, except for some reason the past month or to have seemed outrageously hot, and I have been feeling excessively lazy on the field. Looking forward to crisp, cool autumn games... and a renewed level of exertion as temps drop down.
4. The new job is going fabulously--more new challenges than I ever expected, and a wonderful group of people to work with. Admittedly, I'm looking forward to feeling more like an "expert" in my area of alleged expertise, but for now--I'm learning a ton, and enjoying what I do.

So yeah, pretty boring stuff. In an effort to make it more exciting, I'm including a close-up shot of one of the freakin' ticks that filled itself to capacity and dropped right off my dog. Seriously gross.

Enjoy!

hot hot heat + soccer (in a frying pan) = carpe diem

2010-07-06T20:43:00.000-07:00

Holy mackerel, it was hot today. Maybe not as hot as some parts of the country, but hot nonetheless. Especially for a soccer game. The heat, combined with the artificial turf surface we played on that sucks in every single degree out of the atmosphere and multiplies it by 12 before shooting it back out like a giant hair-dryer, brought back (temporarily) the more-than-a-year-old symptom of tweaked out vision in my left eye. This re-emergence can be attributed to Uhthoff's Symptom, or the phenomenon through which symptoms are prevalent during heat and/or physical activity (among other triggers).

It is entirely possible that the vision loss was purely psychological. I know that heat can exacerbate symptoms, so perhaps I'm hyper-vigilant and subsequently prone to letting my imagination get the best of me. But that doesn't matter. The important thing is that this evening's phenomenon served as a gentle reminder that I need to be out there pushing and challenging myself and getting all up in Uhthoff's grill.

Settling dust...

2010-06-28T18:50:00.000-07:00

I am home tonight, having just returned from a lovely summer bikeride to the bookstore near my house. I have nearly forgotten the simple pleasures like this that I love about summertime, and this week I'm fortunate to be able to embrace them. I have a slow two weeks on tap after a bunch of travel (both for work and for fun), and after last weekend's championship victory, my soccer schedule has scaled back from 5 games per week to 3. I finally feel like I am settling into my new job, so a collective sense of calm is finally returning.

In the midst of the chaos that headlined the past few weeks, I have neglected my blog more than ever before. Please forgive me! I promise to bring everyone up to speed on a plethora of topics, including the MS60 that my wingman and I participated in (with amazing support of friends and family resulting in more than $700 raised for the MS Society), the amazing garden that has sprouted from my seedlings, and the multitude of trips I have been on over the past several weeks (spanning Vegas, NYC, Iowa, and Florida).

For tonight, however, I'm heading to my porch with a yummy glass of wine and one of my five new books. Who could ask for a better evening?

oh my...

2010-05-07T20:53:00.001-07:00

It's only a matter of hours until I head to the start line for the 60-mile bike ride, and I'm gathering a pile of winter gear. Yes, winter gear. Because it's supposed to snow tonight, and I may be slogging through an inch of sloppy wet nonsense tomorrow. WTF, Minnesota... WTF?

p.s. the knowledge that all of you wonderful people helped me to earn more than $700 for the MS Society will help keep me warm and fuzzy. Maybe not so much physically, but still--I'm in awe of all of the generous donations.

a moment

2010-04-29T22:18:00.000-07:00

If there is any likeness between my life and a run through a washing machine, I am currently fully immersed in the Agitator cycle.

The events of the past few weeks have upended my comfortable life and catapulted me into new, exciting, and uncharted territories.

I am leaving a job I have been with for more than five years and moving into an amazing new role within the same company--all the while attempting to document and transition responsibilities as best I can to make life easier for the team I'm leaving. I'll be moving away from my full-time home office status to a split between corporate offices and my home office.

I started reffing soccer games for the co-ed recreational league in which I play (and while that may not sound like a big deal, you should try running around a field for an hour having 15 people question, challenge, and refute every word that comes out of your mouth--quick way to realize the ol' skin needs some toughening up--and FAST).

My parents sold their place in Florida and are slowly transitioning to full-time Iowa residency--a move that has resulted in a handful of wonderful heirloom furnishings for my home (some cleaning, re-arranging, and donating of old pieces is definitely in order).

The unseasonably warm temps of spring in the midwest appear to be sticking around, and I have a window full of rapidly growing plants--with little more than an idea of where to put a garden and a list of physical "to do's" to get them moved outside.

My inability to say "no" to any of the fun soccer teams I play with has me gearing up to be on the field 5 fun-filled days per week.

My dogs constantly remind me that just because my routines are changing doesn't mean I can neglect them in the process.

These events--large and small, exciting and at times a little scary--have me traversing chaos, hurtling fast-forward through time, squeezing every last minute out of each day to stay on top of things without letting anything fall. In the end, the changes are all positive, but the undercurrent of change is shifting me from one who was knowledgeable and confident in what I was doing to one who has much to learn.

Tonight was the first night in weeks that I have had time to sit back, wash a few dishes, dust the growing mounds of dirt off a few surfaces, and try to restore some sense of order in my home. In the process, I sorted through a stack of mail on my counter from a few days ago. In the middle of the stack I found an issue of the publication my local MS Society chapter puts out. I flipped through the first pages of the magazine, and skimmed summaries of local events and support groups for people living with MS. And suddenly, with no warning... the floodgates opened, my throat tightened, and tears streamed down my face.

I'm pretty sure the outburst can be written off as a not-so-gentle reminder that I could use to catch up on some sleep and let go of some of the thoughts and worries I'm allowing to stress me out. But a tiny little rumbling of ice-cold fear in my belly thinks the tears were a result of a jarring realization. This crazy, mysterious phenomenon that is happening in my body has not hindered my ability to navigate the changes I'm working through today. But it could. It so easily could. All it would take is a tiny little strategically placed lesion--very much within the realm of possibility--to crumble my delicate reality into a pile of scraps and dust, vulnerable to the slightest breeze. A time bomb in my system ticking quietly, waiting for the right moment to explode. A reality I understand much more clearly after my relapse a few months ago.

I guess occasional collisions with these types of fear are expected when you live with MS. These fears are eloquently described in an amazing post on Wheelchair Kamakaze's blog, and tonight's temporary shift in perspective seemed like the perfect opportunity to share it.

happy tattaversary to me! (a very long and tangential post)

2010-04-14T18:03:00.000-07:00

I can hardly believe it as I'm writing this, but my introduction into the club of the inked was one year ago today. A year! 12 months. 365 days.

So much has happened in the last year, and yet it seems like it was just yesterday that I was sitting in a room absorbing my first neurologist's words: lesions, myelin, optic neuritis, oligoclonal bands, relapsing and remitting, multiple sclerosis. Wow. It has been a whirlwind, and many things have happened over the course of the year to shift my perspective, only to turn around and shift it again. And I'm definitely in a better place because of it.

One of the biggest lessons I have learned is that I am not invincible. For several months after my diagnosis, I held on to that sense of invincibility. I honestly believed that I would be among the few lucky patients who would have a "dormant" version of the disease that would rest quietly in my body until I was getting on in my years, when the symptoms would be little more than the other aches and pains I would experience with age. Reality bitch-slapped that notion right out of me when I had my first relapse, just 8 months after my diagnosis. Too soon.

So now I know it can happen, and the odds are that it will happen again. Sometimes when I think about that, I can see down a path to a very dark place, where I feel like I am competing against time. When is my next relapse coming? And what if it does more damage than the first two, and impedes my ability to walk, or to see, or something else I have taken for granted thus far in my life? And for a moment I can't catch my breath, because there is no way of knowing the answer to these questions, and the unknown can be scary as hell.

And then I stop myself from moving toward that darkness, and I re-frame. If, in fact, the worst-case scenario does happen someday--if I lose my vision, lose my ability to walk, or worse, then what will I regret about today? Was there something I missed out on? Something I took for granted? What can I do to make sure the answers to these questions is "no?" So I will myself to experience--to do, to learn, to hope, and to enjoy.

I push myself to be very physically active, and to enjoy my activities and improve my skills. I play soccer, I run races, and this year my goal is to incorporate more cycling into that equation. As part of that initiative, I signed up for the MS 60 mile bike ride in Minnesota. (Click here if you're interested in making a donation, or finding out more about why I decided to participate in the ride.) My BFF Cindy signed up to ride with me, and she said she'd ride right alongside me, even though I'm guessing I'm going to be pretty slow (relatively speaking--she's a tough cookie when it comes to endurance competition, and she knocked out a very impressive time in a duathlon last year).

This brings me to another point I have been meaning to bring up in this blog for a very long time now, and it seems only appropriate to mention on the Tattaversary. I am not sure I would or could be in such a good place right now if it weren't or the amazing support system I have in place--my family (including my immediate family, my extended family of aunts and cousins who I keep up with now more than I ever have before, and my bonus family of my brother's in-laws in Utah who I know keep up with this blog from time to time), my friends (both local and long-distance), my co-workers, and my community. I am constantly surprised by the wonderful ways they support me, through the simplest and grandest of gestures.

So to those of you who read this blog (and to those of you who don't, although you will likely not see this shout out), thank you. You are all amazing people, and I am damn lucky for that.

checking in on the seeds

2010-04-11T20:54:00.000-07:00

A few weeks back I posted some pictures of my window of seedlings for the garden. I'm pleased to report that every single species I planted has been accounted for with rapidly growing green sprouts.

With the amazing weather we had today, I was able to get outside to do some of the preliminary prep for the garden--transplanting a lilac tree, moving a few plants around, and mentally planning some of the garden spaces. I'm hoping these fun projects will yield a bumper crop of delicious veggies... fingers crossed :)

Here are some snapshots of the seedlings' progress thus far... (LLB, sorry for the delay--but this is in response to your request :)

new travel experiences

2010-04-10T20:23:00.000-07:00

Last week I traveled to D.C. for a work conference. Having already made my inaugural trip with my medication in November, I figure it would be smooth sailing. And while I didn't encounter any significant problems, I did gain a few new insights through a couple of "hiccups" in my journey.

1. When navigating through security at MSP, I learned that in order to clear the security checkpoint, the ice pack in my medicine travel case must be frozen. Certainly not an issue on the outbound flight, but how's a girl to keep an ice pack frozen in a hotel room without a freezer?

2. Hotels do not simply make freezers available to guests with liquid temperature regulatory requirements (at least not the one I stayed at). In fact, it was somewhat difficult finding a solution. It was only after several repetitions of the story to the front desk staff, along with a copy of my Doctor's note, that they were able to put my ice pack in the restaurant freezer to get it frozen in time for the security pass on the way home. I recognize that this is a good thing--the hotel has health code requirements and guest safety at top of mind (they did not know what the ice pack contained). I would be unsettled if it were any other way. However, it is a good lesson in how to handle the issue in the future.

3. The security line at Reagan National Airport in D.C. has a separate line for "families and travelers with liquid medications." I consider myself a relatively savvy traveler, generally flying several times per year. Between my travel experiences and the fact that I work in the field of travel, I consider myself to be well-versed in how to navigate through a security line pretty efficiently. However, my designated line easily doubled the time I would have spent in the other, more fast-moving line.

None of these new findings are anything more than minor pains in the butt, but good information to keep in my pocket for future travels. And in the event that someone reading this is planning for their inaugural travel with injectables--hopefully something here will be helpful.

In the meantime, some pictures from my my travels...

Above the doorway at the Old Ebbitt Grill

Street scene at dusk

And finally,Delicious treats for weary travelers.

old hat, new look

2010-04-03T18:46:00.000-07:00

It has been nearly a year since my initial diagnosis, and to mark the milestone I thought I'd update the blog with a new look. I figured some sort of update would be appropriate, since I'm slipping to about one post per month these days...

I do promise to post a few new items in the next week or to, leading up to my anniversary on April 14. Until then...

Veggie Tales

2010-03-07T19:38:00.001-08:00

With temps hovering in the mid- to upper-40s and mounds of dirty snow quickly pooling into sloppy puddles, it's hard to believe we're in the midst of what is commonly referred to as the snowiest month in Minnesota. In the midst of this too-good-to-be-true warm-up, it seems everyone has been struck with a touch of spring fever. It would appear that my entire neighborhood spent the majority of this weekend's daylight hours outside. This afternoon, some guy was playing Ultimate Frisbee in the slushy field across from my house in SHORTS and a T-SHIRT (a little nutso, in my opinion).

Not surprisingly, I have also jumped on the spring fever bandwagon. This weekend I anxiously began the first steps in the long process of building a better vegetable garden.

First, I hung a homemade shelf in the bay window on the south side of my house. This window gets fantastic sunlight for much of the day, and I'm hoping it will be a good springboard for my veggie collection. Here's a summary of the veggies I have started:

Bell Peppers

Poblano Peppers

Jalapeno Peppers

Beaver Dam Peppers

Italian Heirloom Tomatoes

Brandywine Tomatoes

Grape Tomatoes

Eggplant

Cucumbers

Brussels Sprouts

Now all I do is become a Landscape Architect (or, ahem... tap the brain of my BFF who happens to be one) and devise a plan for incorporating all of these plants into the tiny strip of yard that lines the south side of my house.

I also have plans to rummage through the family farm in Iowa to find some wood to build a raised area for some of the veggies, bringing a little bit of my family's history right here to Minneapolis.

For now, I will leave you with a snap shot of my big dreams, preliminarily set in motion. Enjoy!

p.s. March 5 marked a full year from when I began the rather intense series of medical tests--which means the 1-year anniversary of DxDay is rapidly approaching (HOW is that possible???). I have a few commemorative posts in the works, so check back soon.

Right Back to Boring

2010-02-01T17:16:00.000-08:00

Once again, I am operating under the "no news is good news" theory. As such, my blog is pretty lame.

Don't get me wrong--I am in NO way hoping for any blog-fodder-worthy excitement (exception: a cure for MS, breakthrough treatments--good stuff like that). I'm just apologizing for my lack of posting. I do have a few posts (not requiring new symptoms, knock wood) in mind, and I promise to post them as time allows.

In the meantime, hopefully you're as happy as I am for the fact that I'm not taking my symptom-free days for granted (which means less time sitting in front of my computer).

I'm back, bitches*

2010-01-25T19:38:00.000-08:00

I just played my first symptom-free soccer game since early December. And it felt fan-freakin' tastic. So good, in fact, that I didn't even realize how good I felt until my pal K asked me how I was feeling after the game. I had forgotten that I was supposed to feel dizzy (which surprises the crap out of me--I thought I would hear voices singing down from the sky on the day that I could honestly say "normal" had returned).

So yeah--I'm back, bitches.

*Sorry about the language, but there's really no better way to articulate my return to normalcy.*

p.s. F.L., I hope "normal" is finally returning for you, too!

One Week and Two Days Later...

2010-01-19T21:06:00.001-08:00

It has been more than a week since my steroid regimen ended, and the improvement I have seen is phenomenal! I feel like I have finally climbed out of a giant, slippery hole, and I have Steroids to thank for helping me.

A few details (both for the benefit of anyone following the progress, and for my own reference in the event that I find myself in a similar situation down the road) about my experience follow.

Monday, the first day of the "crash," was not too bad. I think I did feel a little bit of the jittery, anxious side effect by the time I went to bed the night before, which made for a rather poor night of sleep. So a bit of tiredness, coupled with the drug's hasty withdrawal from my system, made me feel a bit "hung over" on Monday. I had a headache, I was achy and relatively uncomfortable, but all in all not too bad.

I woke up Tuesday morning weighing 7 pounds more than I had only a few days before. And I could feel it. My face was puffy, my eyes felt swollen, and my belly and rib cage almost felt bruised. It also felt like there were sandbags on my eyelids, and like I was walking around in a fog. This was perfect, since my boss had flown in from out of state, and we were meeting to plan for 2010 that day.

Through these two days, I began to get nervous that the steroids weren't working. My expectation was that the high dose of the drug would knock the symptoms out before the drugs left my system. In hindsight, it was not quite as fast as I expected.

Wednesday morning I still felt foggy, but was a few pounds lighter, and by mid-day the fog was lifting.

By Thursday the remaining five pounds were gone, and I was feeling better than I had in a very long time.

Since finishing the dose of steroids, my symptoms have progressively subsided. In my day-to-day activities, the dizziness is now virtually gone (aside from an occasional moment here and there).

One thing I am discovering (or I suppose "remembering," since it was a notable part of my initial Optic Neuritis prior to my initial diagnosis back in April) is that heat exacerbates my symptoms (Uhthoff's Symptom). Because of this, the symptoms are lingering a bit more when I play soccer. I will say, however, that the symptoms have improved with each and every game that I have played in the last week or so. That's saying something, since I have played quite a few games.

Tonight was no exception. I hope this improvement continues until I'm back to where I was a month or two ago.

But either way, this has been a valuable experience, to say the least. I feel a little more knowledgeable about what I can expect in the future, and I know how my body reacts to the steroids (at least how it reacted this time). I am also coming to realize that this situation is a potential part of my reality going forward. I think that knowledge will help me identify techniques to cope with relapses, and how to integrate them into my life.

It has actually made me think a lot about my tattoo. The meaning of the Dwennimmen is not only strength, but also humility (the ram--although strong--submits humbly to slaughter). I think the best thing I can take from this experience is that it is okay to stop trying to be "normal" when things clearly are not. That it is okay to accept my situation with a little grace and vulnerability, and take the time I need to work through it.

And that's about all I have to say about that.

Moving in the Right Direction

2010-01-13T20:13:00.000-08:00

It has been a few days, but I wanted to keep this up to date with details about the steroids, side-effects, and symptoms.

The last couple of days were a little rougher than I expected, but the good news is that today I'm starting to remember what that elusive "normal" state feels like. In fact, this evening I leashed up the dogs and went out for my favorite wintertime activity--a lovely walk along the frozen creek across from my house. I still felt a little "off" on my walk, but leaps and bounds better than I have been feeling for weeks.

There are a lot of new insights, perspectives, and questions I have taken from this experience--and I hope to organize my thoughts into a few posts in the coming days. But for today, I'm happy to say that I'm doing okay.

The Daily Specials, Part 3 of 3 (a.k.a. "Late" breakfast)

2010-01-10T18:57:00.000-08:00

Greetings dear readers! This posting comes many hours after breakfast (and the assortment of supplements and pharmaceuticals that accompanied it), but I did not want to neglect the third in a three-part series.

Today's menu consisted of a pre-game ritual favorite of mine, toast with peanut butter and homemade raspberry/peach jelly (thanks Mom!). On the side was an assortment of vitamins, supplements, and the third and final 1,000MG dosage of steroids (no, I did not skip the injection--just disposed of the needle before getting the picture in, and wasn't about to dig in a Sharps bucket of exposed needles for the sake of the photograph).

As day three winds to a close, I have yet to experience any of the dreaded side effects (with the exception of the icky--but certainly tolerable--taste in my mouth). I have been sleeping great at night, no weirdness during the day (other than the hunger thing, but that's not SO weird, right?), no euphoria/hyperactivity/and/or irritability.

On the flip side, I have also not seen a huge difference in my symptoms. I was feeling pretty good today for awhile, but upon getting back on the field for a soccer game (which quickly turned into two games--yes, I am doing my best to stay active and not look like a bumbling idiot while doing it), I was knocked right back to the world of dizzy. However, it does feel like I am making steps in the right direction. No motion sickness meds have been required for the past 3 days (not even for games--which is significant), and the dizziness is less constant. I have also been energized and invigorated for my routine outings and soccer games. These are welcome indicators that I am either on the mend, or at the very least finding better ways to manage my symptoms. Whatever the case, it has been wonderful taking baby steps back toward that elusive "normalcy" I keep referring to.

Crash?
The next road bump in the journey is the much anticipated post-steroidal "crash." DSO informed me that as the high-dose regimen leaves my system, I'll have some "withdrawal" symptoms, which he described as similar to a hangover of sorts. Hopefully these symptoms are as mild as the side-effects, and are short lived. I have some relatively big meetings this week, and I'm hoping to be feeling fantastic for them. Or at least pretty darned good.

Note: Sending a great big congratulatory shout-out to j-dogg in Jersey. Sending giant hugs across the innerwebs. It was great catching up with you today :)

And now for Today's Special...

2010-01-09T08:47:00.001-08:00

Here we are, day 2 of the 3 dose steroid regimen. I was prepared to experience at least a few of the side effects (this site provides visual examples of some of the side effects). But my first day was pretty uneventful. I definitely had a strange and rather unpleasant taste in my mouth for much of the day, and a few hours after I took the steroid, I think I could have given Old Country Buffet a run for its money (crap, I was hungry), but I was not jittery, nervous, euphoric, or anything like that. In fact,I hit a wall of exhaustion after work yesterday afternoon, and took a long and refreshing nap. The dizziness is still hanging around, although perhaps to a lesser extent. I did not feal any nausea yesterday, and did not take any motion sickness meds.

Last night I made a field trip to Home Depot to pick up some goodies for a home project I'm working on this weekend, and I will say it was the first time in weeks I actually felt good about getting into my car and leaving the house. Yes, I was still dizzy, but I think the nap (and possibly the 'roids) gave me a little burst of energy. The lack of nausea didn't hurt any, either.

And now here's a look at this morning's menu:

A delightful spread of scrambled eggs with fresh veggies, toast, fresh squeezed OJ,with a side of steroids, supplements, and injections. Here's hoping for more steps toward normalcy, and a productive day of home projects.

Cheers!

Breakfast of Champions

2010-01-08T08:41:00.000-08:00

Today's special includes (clockwise from the bottom) a delicious toasted sandwich roll with Laughing Cow light swiss spread, a delicious ripe Clementine, 1,000MG of Methylprednisolone (spread between four 250MG capsules), calcium chew with vitamin D, a multi-vitamin, 400MG of vitamin D, and my daily Copaxone injection. And to wash it all down, a sparkling bottle of pomegranite cherry flavored water (I have been warned that the Methylprednisolone has a rather unpleasant flavor, which may coat the capsules).

Here goes nothin'...

Cheers!

More News, a.k.a. Pre-Euphoric Posting

2010-01-07T21:11:00.000-08:00

I had my appointment with DSO on Monday, and he confirmed my suspicions--MS is behind my new and inconvenient symptom. I guess that makes my diagnosis "official." At least that's how it feels. I think I was living in an optimistic world, bordering on denial, where I truly believed I would be the power-patient who never experienced another symptom after my diagnosis, but sucked all of the lessons out of the diagnosis to enrich and enhance my life. Carpe diem and all that. Ah, what a story that would have been. But alas, this "Choose Your Own Adventure" story has gone into auto-pilot--at least for a short while--and I am no longer at the helm.

Let me backtrack a bit to shed some light on what exactly what this new symptom is, and what it means for me. Based on DSO's clinical examination, the apparent cause of the dizziness and accompanying motion sickness is nystagmus. DSO believes there is a small lesion in the vicinity of my brain stem that--if I understand correctly--is interrupting communications between my eyes, wreaking havoc with my visual stability. The result is near constant dizziness, accompanied by occasional motion sickness (mitigated by periodic doses of OTC Meclazine), and difficulty focusing on people and objects.

Monday's clinical exam was followed by an MRI earlier today, which unearthed a new lesion (in an area of the brain completely unrelated to my current symptom--go figure), and confirmation that the lesion causing my symptom is visually undetectable in my MRI results, but in an area so sensitive that the symptom is clinically identifiable without supporting MRI images. In short, my MS is progressing, but not at an alarming rate. This progression is evidenced by the new lesion, as well as the new (unrelated) clinical symptom caused by a second--and apparently undetectable--lesion.

As I mentioned in a previous post, I (like most newly diagnosed patients) was diagnosed with relapsing and remitting MS. In short, this means that symptoms come and go over time as myelin is damaged in my central nervous system. By definition, my nystagmus is a result of a relapse, and it should only be a matter of time before I go into remission. However, that timeframe can vary pretty significantly from one person to the next, so I could be looking at days, weeks, or even months before returning to "normal," whatever that means for me. DSO informed me that I can expedite the return to remission by taking a very high dose of steroids, explained to me as the equivalent of 250 standard steroid pills per day--for three days. The benefit of such a high dose of steroids is a catapult back into remission. The downside to this high dosage is the laundry list of side effects that can be associated with it.

After several conversations with DSO, my dad (also an MD), and a few friends, I have thoroughly weighed my current discomfort with the possible side effects of the steroidal treatment. It is clear that the nystagmus is having a pretty significant effect on my quality of life, and as such I have elected to begin a three-day course of steroids tomorrow morning. I'm not sure if I'll ever be sure that this was exactly the right decision, or if I'm jumping the gun and using the steroid regimen to treat something that one day will seem like a cakewalk compared to other symptoms the future holds. But I don't think I care.

I just want to feel "normal" again.

**Check back soon for possible steroid-induced postings in what could well be 3 sleepless days of euphoria, irritation, sleeplessness, and increased blood pressure. Methinks this could get interesting...

Out with the old...

2009-12-31T20:51:00.000-08:00

Wishing you all a happy and healthy 2010. At first I had considered summarizing the year--the good, the bad, the feelings, all that nonsense--but instead I thought I'd simply share a song that articulates the turning of yet another calendar page.

Best wishes for a brand new decade and a fresh start. I know I can't wait to see how it turns out.

Happy New Year.

News

2009-12-29T17:47:00.000-08:00

I have always said that no news is good news, and I stand by that claim. So while I'm trying to come from a positive place with this blog, today I'm struggling a bit. It has been a particularly rough day, on the heels of a bumpy couple of weeks.

For nearly a month, I have felt pretty worn down. At first I thought I was coming down with something--a cold or the flu, but nothing ever really kicked in. Until the dizziness. For nearly 3 weeks I have had increasing levels of dizziness throughout my waking hours, accompanied more recently by something that feels like motion sickness. Today, for example, my one trip out of the house (grocery store) nearly made me vomit. The dizziness and motion sickness are also causing some more issues with my vision--at times it's tough to focus on objects, and my left-side peripheral vision is a big ol' mess.

I had been waiting until after my holiday travels to contact DSO, thinking that perhaps if I ignored it, the dizziness would go away. Unfortunately, that has not yet happened. So last night I sent DSO an email, and am now scheduled to see him on Monday. In the meantime I'm a little scared and frustrated, and am hoping my visit with him will bring clarity and a little relief. Fears of more (expensive) tests, failed treatments, new chinks in my armor of invincibility, and questions about if/when this dizziness will go away are floating around in my unsettled head.

So this probably seems like a pretty gloomy post, but I am guardedly optimistic that it is just a speed bump in my journey. I keep reminding myself that I was diagnosed with relapsing and remitting MS, and hopefully it is only a matter of time until this relapse swings back into remission. Or, maybe I'm totally off my rocker and this dizziness is all in my head (no pun intended), or there is some other medical explanation for the dizziness.

While allowing myself to have a pity party today, I watched a movie that I accidentally ordered from Netflix (it sneaked up to the top of my queue when I wasn't paying attention). Crazy Sexy Cancer is a documentary written by a thirty-something woman who was diagnosed with a rare type of cancer, and it documents her journey to find proper medical care and treatment for her disease. Along the way, she learns some amazing things about herself, and some serendipitous and wonderful things happen to her--none of which would have transpired without her diagnosis.

I hope for some similarly serindipitous experiences and personal growth. I have some very specific goals for 2010, goals that I have been working toward for a couple of years now (since well before being diagnosed with MS). I want to continue moving toward these goals with the mindset that the challenge of my new symptoms will only serve to make attaining my goal that much sweeter. Because that is what I want my story to be.

And in the meantime, I am challenging myself to maintain a positive attitude and a sense of humor--tomorrow is a new day, and I can start it with a renewed and refreshed mindset. My little brother gave me a Christmas gift that will help see to that (the bit about the sense of humor, anyway).

Giving Thanks

2009-11-25T10:59:00.000-08:00

Greetings from a cozy little coffee shop in Ames, Iowa!

I'm on a field trip from the farm, where I'm fixing to celebrate Thanksgiving with my family, and wanted to touch base with the blogosphere about some thoughts I've been having about giving thanks.

Of course I'm thankful for hundreds of things--I have a great family, and a network of fantastic friends, a job in a difficult economy, and a roof over my head.

But truth be told, it was sort of a bummer getting diagnosed with MS this year, and there have been a few times where I let myself dwell on the implications of that diagnosis. But at the same time, it has also helped me realize that today, I'm in a pretty freakin' good place. I'm heading into the winter season with lots of soccer, a newly renewed gym membership, and a brand new pair of snowshoes.

Sometimes I'm not sure if my family and friends understand why I have been filling so much of my schedule with physical activity of late, but the truth of the matter is this: Today, I can. And I honestly and realistically don't know if I'll be able to say that tomorrow. So even though it's expensive, and at times conflicts with some other fun activities, it is good for me. And it reminds me that my diagnosis with MS does not mean I have to change my lifestyle--at least not today. And for that I think I'm pretty damn lucky.

So from someone who has a tremendous amount to be thankful for, I send you my very best wishes for a safe and happy Thanksgiving. And I hope you all have much to be thankful for this year as well.

The Night Before New York

2009-11-04T21:32:00.000-08:00

Tomorrow marks my first airline travel since starting the Copaxone--the last of the travel tests with my injections. I have my travel kit prepared... ice block frozen, meds in their case, doctor's note in the pocket. I'm resigning myself to the fact that--despite my phenomenal packing and organization skills--I might just be that jackhole who takes hours to get through security. Oh well, I suppose it's worth it--I'm going to visit my brother, sister-in-law, and lovely niece in New York. The weekend promises to be fun-filled and busy, as some of our relatives from Norway will be visiting the big apple at the same time, as will a good friend of my brother's and mine from back here in Minneapolis.

I cannot begin to tell you how much I'm looking forward to getting away--a break from work, a break from the dogs, and mostly a reminder that I survived a long and dreary October (I think it rained almost every single day). November is going to kick some ass, and I can't think of a better place to officially usher it in.

Check back next week for a delightful photographic recap of the long weekend.

Yikes Jeepers, That's no Fun!

2009-10-20T13:28:00.000-07:00

Soooooo… have you ever seen an episode of Grey’s Anatomy (or House or ER or Mercy any other medical drama for that matter) where someone gets whisked into the emergency room with heart problems, the doctors crack the chest, and then ultimately massage the heart with their hands?

I have a feeling that Copaxone transformed into an overeager intern upon entering my bloodstream yesterday. I popped the shot into my arm just like any other Monday, leaned on the counter while applying pressure (a little more bleeding than usual), and BAM! The Copaxone hitched a ride in some major vein right to my heart and grabbed on for dear life, gripping, twisting, and wringing all the while. My chest tightened, my body lurched with nausea, pain exploded in white hot spurts through nerves up and down my back, I became cold and clammy, and an overwhelming sense of anxiety took hold. I made my way from the kitchen toward the bedroom, giving pause at the bathroom door to determine whether not a good vomit session was in order. The bedroom won out, and I curled up with my eyes closed for a few minutes, trying to think about squishy little puppy dogs, warm sunshine, fuzzy sweaters and other soft and happy things.

And then, as quickly as it came on, the ambitious little drug released its grip and my body flowed right back to a normal state.

Methinks I experienced my first side effect.*

*From copaxone.com: Some patients report a short-term reaction right after injecting COPAXONE®. This reaction can involve flushing (feeling of warmth and/or redness), chest tightness or pain with heart palpitations, anxiety, and trouble breathing. These symptoms generally appear within minutes of an injection, last about 15 minutes, and go away by themselves without further problems.

Looking Back

2009-10-14T21:29:00.000-07:00

In a few hours I'll be 35. Old enough to legally run for president. Old enough for one of my soccer teammates to say, in awe, "I just hope I am still playing soccer when I get to be 35." Old enough to escape the "we card anyone who appears to be younger than 35" clause (yay--no need to carry that cumbersome identification around anymore!). Yes. That is how old I will be.

But before the calendar page flips that unflappable flip, I thought I'd take a quick moment to reflect on the last 12 months. In retrospect, there were a few days that I'm glad are behind me. Really glad. Really, really glad.

But there were also a lot of days I wouldn't give back for anything--and they certainly outweigh the bad ones.

A couple of years ago, I turned 33. I couldn't wait for that year to begin, because I had this feeling--confidence, really--that things were just getting started, and that I was heading in a really good direction. And despite a ridiculous amount of medical testing (and the rather giant costs associated with it), despite a diagnosis with Multiple Sclerosis, and despite a pretty lame break-up days before my birthday, I think things have continued in that direction throughout 34. Because the one thing that came out of all of this rollercoaster year was this: I have a whole new perspective that I never would have gained if my year were status quo.

So, 35, what do you have in store?

I can't wait to find out.

I did it. So there's that...

2009-10-06T18:28:00.000-07:00

The talk of the town in Minneapolis this past weekend has been sports. Sports sports sports sports sports. Huge football rivalry on Saturday--U of M vs. Madison. Huge Twins game on Saturday, which resulted in a victory and a tie-breaking follow-up game on Tuesday (go Twins!). Vikings (with Favre) vs. the Packers (HUGE rivals, with or without Favre on the roster) on Monday. And nearest and dearest to my heart--the Twin Cities Marathon and 10-mile Race on Sunday.

A few months ago I decided with a few friends to sign up for the 10-mile race on a whim (it's a tough race to get into, based on a lottery drawing). Much to our surprise, we got in! Over the course of time leading up to the race, I didn't train as well as I would have liked to--the circumstances of my strategy and approach on race day were different than I had been preparing for. But despite any shortcomings in my training, the race was great. The weather was as good as we could have asked for, and my friends and I were all pleased with our results. And on the plus side, it was a great opportunity to get a snapshot to send my adorable niece for her first birthday--which was also on race day.

As if the race weren't enough excitement for one day, I had a 90-minute soccer game that evening. I'm proud to report that I played, and we won. At least I think we won. Or else we tied... at any rate, we didn't lose.

The rest of the events of last Sunday were anything but fun, and honestly they're not topics I'm comfortable with addressing in this blog. The combination of activity and events of Sunday were wholly exhausting--physically and emotionally--and it is not a day I would care to repeat any time soon.

But I finished the race with a respectable time, I made it through the lousy events, and I stuck it out to finish the day at the soccer game--so all in all I'm keeping it on my list of days I can be proud of. Ain't nobody takin' that away from me.

Fixation

2009-09-22T20:54:00.001-07:00

PLUS

EQUALS

Batscat effing crazy.

Have you seen the movie Spanglish? When Paz Vega (aka Flor) accepts the housekeeping job at Tea Leone and Adam Sandler's house, one of the first things things they tell her is NOT to throw the tennis ball to the sweet little golden retriever. In my younger, more naive years (circa 2004), I considered this film a cinematic hyperbole for a dog's enthusiasm for play. Wrong. So freaking wrong.

I know now that the Spanglish dog was really just a precursor for how my life would play out a mere five years later.

In the past week and a half, Darby has found the tennis ball. In fact, she found an entire can--FOUR tennis balls. And watch out. If you can't fully commit to the game of fetch, I suggest you ignore her from the moment you see her mouthfull of slobbery green fuzz. Because she can play for hours. It doesn't matter what you're doing, where you are, or what time of day it is. When Darby wants to play with her tennis ball, she's gonna play with her tennis ball--and she'd really like your active participation in her game. Really. And she doesn't mind telling you so.

Last Saturday morning, for example, I was enjoying a lovely morning slumber undisturbed by the weekday alarm clock. Half asleep, I felt something strange along my side. Thud... damp nudge... squish. Drop the ball. Nudge the arm with the cold wet nose. Pick up the ball and chew. Repeat. Drop the ball. Nudge the arm with the cold wet nose. Pick up the ball and chew. Repeat. I could go on and on, but I think you see where I'm going.

Clearly my dog's low platelet counts (and yes, they're still low--as confirmed by the vet this weekend--damn the cursed medical mysteries at Casa Skjold) have hurled her over the edge of sanity, where she has been teetering for dog years.

Evidently it CAN be Done…

2009-09-11T15:07:00.000-07:00

So last weekend was the big camping trip I mentioned being nervous about in a few posts. It’s not so much the camping that worried me, but rather the camping with perishable meds.

Fortunately, the stars were aligned, and the weather worked in my favor. It was perfect. Warm (but not too warm) during the day, and cool (but not too cool) at night. The cooler stayed cold, the medication stayed cool (without freezing), and I was able to inject myself (albeit not in the most sterile of conditions) without issue.

Had it been a really hot weekend, it may not have been quite so smooth. But under the circumstances it was a piece of cake. Which means I was able to put my mind at ease and enjoy the weekend. Here’s some photographic evidence to support that claim…

We had delicious steak with wine sauce and melted gorgonzola cheese the first night, complete with roasted corn. Holy crap was THAT delicious...

On this trip I was also reminded of the lost art of Jiffy Pop. And Uno. Awesome.

And of course, the true sign of a good vacation is a pair of happy and exhausted dogs.

And on that note, I leave you with a picture of the sunset as seen from our campsite--and a recommendation for Lake Maria State Park in Monticello any time you need a quick getaway.

Oops I did it again...

2009-09-02T06:44:00.001-07:00

Misfire. Gah! For those of you keeping track, that's twice.

Anyone know what happens when a dog licks Glatiramer Acetate (aka Copaxone) off the floor? Huh. Guess we'll see...

Gainfully Employed

2009-09-01T21:28:00.000-07:00

After more than a few questionable reactions to everyday situations, Randy's intense rehabilitation program is underway. Part of this initiative is to aclimate him into mainstream society.

Step one of this process was to arm him with a shock collar (if I had more readers, I would anticipate many angry comments to this controversial approach--thank goodness for obscurity!). Despite the negative implications of the shock collar, it is helping Randy to make progress when none of the positive reinforcement techniques we have employed have worked. And frankly, I didn't have a lot of viable options.

Step two is to get him fixed up as a workin' dog.

As you can see, he has been outfitted and is ready to go. In the very near future, he will be tested as a leader (and dog-food carrier) in outdoor survival situations (okay, survival may be pushing it--but we WILL be "roughing it" without electricity).

If all goes well, I'm hoping to get him living independently in a nice home in the suburbs to live out his remaining years. Fingers crossed...

P.S. While Randy may be geared up and ready to head into the great outdoors, for me--not so much. Still pondering my approach to safely storing my meds... more to come on that when I figure out what the heck I'm doing.

Hedonism

2009-08-30T14:31:00.000-07:00

RIP, beautiful cicadas found dead in a compromising position on my patio. RIP.

Some Updates (Long Overdue)

2009-08-25T18:36:00.000-07:00

I was taking a stroll down memory lane, reading some old posts, when I realized that I am long overdue on a few very important updates. So here goes:

1. As best I can tell (not being a vet or anything), Darby is recovering wonderfully. The nasty rash (which it turns out was spotty full-body bruising) has disappeared, and the antibiotic/steroid cocktail she is on seems to be working. Many (many) (MANY) dollars in, I still don't know the cause of her low platelet counts--and I won't go into how ridiculous some of the shenanigans at my vet clinic have been throughout this process--but at this point I'm taking a positive approach and assuming her innards are healing up right nice. I hope so, because damn--she's a good dog.

2. My follow-up visit to DSO was officially the most boring doctor's appointment I have had in at least a year, probably longer. Yup, treatment is going well. Nope, no new symptoms. Blah, blah, blah--boredom is bliss. Rock it out, Copaxone... if you and I get along like I think we will, there may not be any more of those pricey and cumbersome MRIs in my future (at least not for the next year).

3. I completed and submitted paperwork for the Shared Solutions discount program. Once approved, Shared Solutions will cover 85% (give or take some percentages--math is not my strong suit) of my co-pay, leaving me to pay only a pittance for my daily treatment. I wanted to be sure to include this mention in my blog in case someone who is just starting treatment on Copaxone stumbles across this. So someone, if you're reading this, take note: Ask Shared Solutions about their Discount Program. It certainly helps!

4. I'm making nearly as much progress on T09CP as I am in the frequency of my blog postings. Translation: It looks pretty much like it did in the pictures I took when I started (okay, maybe a teensy bit better, but not much). Bees (SO many bees), rain (long overdue), summer social calendars, and a tiny touch of laziness have significantly slowed my progress. And do you realize it's nearly September? That means it could snow here. Literally. Almost any day now. *sigh* Making a mental note to at least get a coat of primer on before hunkering down for the long cold winter...

I'm aware of the fact that there are many other updates I owe this blog, but I think I'll wrap this up for today in an effort to avoid boring my devoted readers to tears. If only for today...

It was Bound to Happen Sooner or Later

2009-08-17T18:53:00.000-07:00

Today’s injection was scheduled to be administered on the right arm. I dove into the routine like any other day… clean the area with an alcohol wipe, disassemble the AutoJect device, load the medicine and re-assemble. I located the injection site, lined up the AutoJect, and snapped the trigger. Pop! And… nothing. I couldn’t believe it. For the first time since starting the injections, I had found a magical spot where the needle didn’t hurt—at all! I reveled in the lack of pain for the full 10 seconds of the injection. I took a mental note to remember the exact location this injection went in so I could use it again and again and again.

I gently pulled the AutoJect away from my skin, expecting a tiny poke of pain as the needle left my arm.

Instead, a small gush of Glatiramer Acetate (aka Copaxone) poured out of the end of the injection device and onto the floor. What? I looked back at the tip of the AutoJect and realized I had made a rookie mistake. I forgot to remove the cap removal thingy, so I shot nearly $100 of Copaxone into the needle cap and onto a pool on the floor.

Nice.

Nothin' Karmic About This One...

2009-08-15T17:25:00.000-07:00

Murphy's law keeps slamming Casa Skjold with citations... this time in the form of a (theoretically, at least) very sick dog. I found a ginormous rash on Darby's belly this morning, and after several hours of testing at the vet, it turns out it's more than the simple itchweed or bug bites I thought it was. Evidently her blood is not producing platelets on its own, and according to the test results (which were run three times just to be safe), her platelet count is so low that she should not have clotted when they took the blood, and she should bruise from the lightest touch.

My little medical mystery.

The blood samples have been shipped to a pathology lab in Texas for a more thorough review. In the meantime, she's on steroids and antibiotics, and under my watchful eye. Any cut or scrape could be a very bad thing at this point, so I'm keeping my fingers crossed. Won't you do the same?

It's okay if you want to judge me after I write what I'm about to write, but when the vet called me with the results, the first thing that popped into my head was this:

"Oh crap, not the good one..."

Where does the time go?

2009-08-11T20:55:00.000-07:00

Tomorrow I have my three-month follow-up appointment with DSO. It's hard for me to believe that more than three months have passed since my first diagnosis, and the symptoms and tests and ensuing confusion leading up to the diagnosis are actually becoming something of a blur.

As I mentioned before, I have officially finished a full cycle of Copaxone, and things are going as well as can be expected. I expect DSO and I will discuss the side effects I have been experiencing, and I suspect I will find out that all is progressing nicely with some minor inconveniences.

As the days continue, and if I remain symptom free (as I fully expect I will), I am at a loss for what to post to this blog. Any reader suggestions would be welcomed. :)

In the meantime, I mentioned that I have had some travels in the past few weeks, so I will leave you with a few of my favorite photographs from the second of the two excursions--a few shots from my best friend's beautiful, amazing, and unforgettable wedding in the Upper Peninsula of Michigan. As a side note, she is an amazing person who has an amazing family who pooled together unique sets of talents to pull off a virtually perfect day.

First, some of the many floral arrangements the bride, her mother, and a friend of her mother's created:

And then a shot of the family and wedding party toasting the bride and groom with home brew made by the bride's cousin (yes, he provided ALL of the beer and root beer for the event):

And a sampling of the creative and graphic design genius imparted by the bride and her groom:

And finally a shot of the many delicious cakes prepared by my best friend's aunt, who (along with her husband) was also owner and designer of the wonderful home at which the event occurred. Ah, what a wonderful weekend.

Habitual User

2009-08-05T21:12:00.000-07:00

Oh my stars, I must apologize for my lengthy absence from the blogging world. Much summer fun has been had, about which I promise future posts. For now, however, I will update you about the landmark that was marked today--I officially took the last of my first round of Copaxone, and tomorrow I start on the second shipment.

I believe that makes me a habitual user.

It has to be said that if I'm gonna be on treatment, I'm diggin' the Copaxone. No side effects, with the exception of the daily injection site reactions (like giant mosquito bites--a pain in the arse, but so much better than disease progression or flu-like side-effects!).

Post-travel, pre-travel, and other rambling nonsense

2009-07-25T09:41:00.000-07:00

This morning I administered my 19th shot in as many days, and all is still going well, for the most part. I'm noticing that the injection-site reactions are taking on a bit of a pattern--a bruise and/or welt (think extra large mosquito bite) that itches for several days, then goes away. I probably won't be searching for clothing that specifically exposes my injection sites any time soon, but then I've never been much of an exhibitionist, so all is good with the world.

Last week I took my first trip with the medication, and it was a piece of cake. Granted, this trip was like taking baby steps into the realm of traveling with meds--it was a 3 hour drive (no airplanes and/or security to deal with), it was my parents house (with ample refrigerator space for storage), and it was with my family, so I didn't have to find a private space in which to administer the injections.

Next week I'll be taking yet another baby step into this realm, driving 6.5 hours to the Upper Peninsula in Michigan for my bestest friend's wedding. It will be a little more complicated--longer drive (have to make sure temperature controls are in place, although it shouldn't be a big deal), and a stay in a rustic cabin (or at least that's how I picture it) on the lake. I'm relatively certain there's a refrigerator in the cabin, which I'm sharing with my bestie's mom (the entire cabin--not just the refrigerator). Since I have known both my bestie and her mom for the better part of 25 years, I think I'll be safe if she catches me mid-injection as well.

My summer travel plans, which are peppered with financial factors (economic smackdown plus new-found medical expenses), are free of airline travel for the foreseeable future. I think these mini-road-trips are a fantastic way to aclimate myself to traveling as a card-carrying injector (literally--I have a card that allows me to travel with my meds).

There has been talk of a camping trip later this summer... now THAT should be interesting. If and when it happens, I will surely have several neurotic posts as I figure out how the heck that will work. Thank jeepers for sites like this one, where someone has already tested a lot of equipment for active peeps dealing with pesky MS.

Evil Doggie Bottoms and Karmic Retribution

2009-07-22T20:27:00.000-07:00

**WARNING--If you are not comfortable with stories about bleeding doggy bottoms, please stop reading now!**

Randy, my Jack Russell Terrier, is pure evil.

Let me backtrack a bit by telling you a bit about my (near) week at the farm in Iowa. As always, it was delightful. My brothers, sister-in-law, niece, parents, aunts, cousins, and grandma all had some quality time roaming around the Iowa acreage, and it was fantastic. With one small exception. Randy the Evil Jack Russell Terrorist.

My cousin's daughter is ten, and she is quite small and sweet. So you can understand why Randy tried time and again to eat her. My niece is 9 months old, and even smaller and (of course) as sweet as can be. So you can understand why Randy spent much of the week devising evil plots to eat her as well.

Randy's list of prospective victims did not end there. It further included the man who came to fix the water main, and the neighbor lady who had the audacity to jog past the farm (twice!).

I am seriously at my wit's end with this dog. I really don't know what to do with him. Am I the right person to handle this human aggression? I don't know the answer to that, or the answer to how to handle the situation.

What I do know is that Karma stepped in to bitch-slap Randy for his bad behavior. This morning, I noticed a funny little swollen area by Randy's bottom when he lifted his tail up. Naturally, the lump (think 1/2 of a golf ball slapped under the skin just left of his pooper) did not go away by itself (despite my passionate belief in the "if you ignore it, it will go away" theory). After work, I ran him to the vet to have his anal sacs expressed (yes, I'm taking this post there). Evidently, the anal sac was actually impacted, and when the vet went to express it, it ruptured a little (can something really just rupture "a little?").

So Randy, the Evil Jack Russell Terrorist, has been hobbling around, ears back (submissive mode), bleeding and oozing in the derrier. Karmic.

Or perhaps it's not so much Karma for Randy, but further punishment for me. After all, I'm the jerk chasing him around with a wet paper towel, cleaning the bleeding butt mound and trying to keep him off the furniture.

I guess the fairy tale of dog ownership isn't all it's cracked up to be...

Coming Full Circle

2009-07-14T06:29:00.000-07:00

I officially made it through the full cycle of injection sites. Today is Tuesday, one week from the first day of treatment, and I’m back to the belly shot. Here’s a quick rundown of my thoughts on each injection site, in case you’re morbidly curious:

1. Stomach--Fantastic
2. Legs--Frankly, both of them sucked. I think I need to change the needle depth, or sit with my legs situated differently… or something.
3. "Hips" (the polite way of saying "Butt")--Not bad… not bad at all!
4. Arms—the most daunting site of all, and they were a piece of cake.

The time it takes to do my injections is diminishing, and I am indeed turning it into a routine. And the good news is that I feel totally fine with the medication. No side effects, aside from the injection site reactions. Awesome.

Now that I have had one week to “master” the art of self-injection, I’m going to attempt to hop over a new hurdle by traveling (starting this afternoon). As such, posting over the next few days will likely be light. Wish me luck!

Copaxone 2, Krista 1

2009-07-09T20:53:00.000-07:00

That's all I have to say about that. We'll see how tomorrow goes, when the needle shifts 'round to my bottom. Good times ahead!

On speaking too soon…

2009-07-08T15:38:00.001-07:00

So the shot in the belly was a piece of cake. Fan-freakin’-tastic. The leg? Not so much.

Perhaps it was the absence of the calming Needle Advisor gently guiding me through the process with nods and quiet reminders. Or maybe it is the fact that my legs are sculpted works of anatomical art with no layer of fat to protect the muscle (my blog=my reality, so please don’t argue!). It doesn’t matter. Whatever the reason, the leg injection kinda sucked.

I think my arm flinched a bit when snapping the release button, and I may have lifted the needle a fraction of a millimeter out of place. The entire injection basically pooled up in a giant, burning, under-skin mass (which was eventually absorbed). Now I’m left with injection-site swelling that feels a bit like ½ of a hard-boiled egg under the skin of my right thigh/quadricep—and I have a soccer game tonight (I favor my right leg, so my quads are important!).

Unfortunately, Copaxone has not yet been made aware of my competitive nature, and does not know that when issued a challenge, the only response I know is to kick it in the a$$. Suck on that, little needle. We’ll see how brave you’re feeling tomorrow when you’re going toe to toe with my left quad!

End of the Era of Invincibility

2009-07-07T17:00:00.000-07:00

Yup, today was the big day--my first shot of Copaxone. I woke up way too early, made several futile attempts to get some work done before my appointment, and spent the drive from my house in Minneapolis to the Neurology clinic in St. Paul pondering the upcoming appointment. To be perfectly honest, it was a pretty sad car ride. I felt like by treating the MS, I was resigning myself to the disease, no matter how mild the diagnosis. My days of unquestioned and unchallenged invincibility were over. Denial was no longer a viable option. I was accepting the MS--three months after the diagnosis, and more than 4 years after the initial problems began.

I was shaking a little when I met with the Needle Advisor, a wonderful nurse practitioner who was very patient, understanding, and personable. She pulled out some practice materials--syringes filled with water, a "skin simulator" puffy square thing that you can attach to your leg to simulate a real injection, and the autoject injection device. She carefully walked me through the process, with her using the practice materials once, and then me using the practice materials once.

And then it was the moment I had been dreading. I made the decision to administer my first injection into my belly. For some reason it seemed like the easiest spot. I prepped the autoject--loaded the spring, snapped in the syringe, and carefully removed the cap. I placed the tip of the autoject against my stomach. All that was left to do was to push the button that snapped the plunger into action and released the medication.

And then I froze. I couldn't pull the proverbial trigger. I gave myself all sorts of advice--some in my head, and I'm pretty sure some out loud. Finally, after what felt like an hour and a half (which is virtually impossible, since i spent less than an hour in the room), I squeezed my eyes shut and got up the nerve to push the button. With a loud "snap," the needle punctured my skin and the medicine was slowly released into my body.

And then I'm all "That's IT? Damn, I could have done that three months ago!"

BS Day

2009-07-06T16:40:00.000-07:00

After nearly three months, it's finally here--BS Day (Before Shot Day). I have gathered up my equipment and medication, called the needle advisory with a few final questions, and have nothing left to do but wait until tomorrow morning (that's not true, I'm going out for a yummy dinner with friends of my brother's who are in town from NY).

But before that happens, I'll follow up with a few updates from previous posts:

1. Update on T09CP: I finally had some down time and dry weather during which I attempted to prime phase one of T09CP, only to find out that some dastardly hornets have taken over the eave thingy I was planning to paint. I managed to get a fair amount of priming done prior to this discovery, but the more obvious part of the project is now on hold indefinitely until I can get rid of the little jerks.

Unfortunately my first efforts to evict the buggers appear to have been unsuccessful. Hopefully the next can of wasp and hornet killer will do the trick. Fingers crossed, please!

2. Fourth of July weekend was fabulous--some highlights include: Johnny Depp (in a movie, not in person), Sushi, yummy wine, great company, fireworks, barbecue, awesome pulled pork, tasty homebrew, a little tennis, no injections.

3. The sharp shooting pains in my eye have returned, and have been lingering for a few days now. I don't know what this means, but I suppose the fact that I start my treatment tomorrow could be a good thing.

I can practically guarantee a flood of new posts after the injections begin tomorrow. Check back often to see what's what.

T-minus seven days (and counting)

2009-06-30T16:56:00.000-07:00

One week from today I have my appointment with the needle advisor to begin a lifetime of daily injections. I know it’s really not so bad, and that the meds are clinically proven to slow the progress of the disease, but I’m cherishing every remaining day that I do not have to deliberately puncture my skin and inject foreign chemicals into my body.

This will also mark nearly three months since my initial diagnosis. Wow. Time flies. But holy crap, it has been a fantastic three months. I got a tattoo. I have ramped up my intensity in soccer (sometimes playing two, three, or four games in a single day). I have spent several weekends at the family farm in Iowa. I have been to San Antonio and Washington D.C (both trips for work, but I managed to find time to do some exploring). I ran a 10k at a pace I was more than happy with. I have taken risks I wouldn’t normally take. I bought a kayak. I plan to enjoy the upcoming 4th of July weekend to its fullest.

I know few things are likely to change when I begin my injections next week, but for some reason July 7th looms out there like a deadline for me. I guess that’s the curse and the blessing of MS—you don’t know what’s beyond the next curve, so you gotta drink in each stretch as best you can.

Girl's Got Some Stones!

2009-06-29T14:42:00.000-07:00

So, after waking up in the middle of the night on Thursday in pretty significant pain, I found out that I had freakin’ kidney stones. Seriously, 2009---WTF? I have no real medical issues for my entire life, and this year I have more pictures and analyses of my innards than I care to think about.

Allow me to draw up a quick run-down of the major tests I have gone through so far this year (not inclusive of any of the billions of lab tests and bloodwork I have had):

1. MRI (brain—with and without contrast)
2. MRI (lumbar/cervical—with and without contrast)
3. Lumbar puncture (aka Spinal Tap)*
4. Evoked Potential Test (visual)
5. CT Scan (without contrast)

I’m not complaining, plenty of people go through much worse—I’m just giving 2009 the what’s what. I am officially closing the list above for this calendar year—no more entries allowed. Period. End of story. I’m out of money. That’s it.

*Interesting note: I tried to rent the movie “This is Spinal Tap” to watch during my recovery from the procedure, but as it turns out, this is not as readily available at my local video stores as one might think. Bummer.

Casting Call

2009-06-19T20:23:00.000-07:00

I saw a link to this video on another blog about a year ago, and immediately fell in love with Ben, despite his insatiable desire to eat his own feces. Since then, I have been researching Ben’s whereabouts, as I would like him to audition for the role of Randy for the remaining scenes of the movie of my life.

**Please Note--I am not a monster, and I am not planning to replace Randy--there are just some days (many, actually) when he does everything in his control to test my patience**

Updates and other very random musings

2009-06-14T20:07:00.000-07:00

It has been awhile since I have written a post that has anything to do with the initial reason I started this blog: my MS. Although I do apologize for this violation of blogger etiquette, I have to say I'm not the least bit unhappy with the course of events in my life from DxDay to present.

The way I see it, my lack of relevant posting materials is a good thing. While I do still have a couple of topics I want to touch on in the coming weeks, I'm happy that my life after DxDay has really returned to normal (with the minor inconvenience of crappy vision when I'm active, especially now that it's getting hot outside).

So please bear with me as I expand on other topics. Today, for example, I thought I would post a few pictures of what I'm terming The 2009 Commitment Project (T09CP). You're probably wondering what the heck T09CP is... well here's a visual for you:

and another...

I have been planning to undertake T09CP for years now, but have managed to put it off for one reason or another. This year, with paint flaking off in large chunks, I decided to suck it up and dive in. T09CP, if you hadn't already guessed, is an annoying, huge, and not-so-exciting stripping (get your mind out of the gutter--I'm talking about paint), sanding, and painting project, focused mainly on trim (with a few ancillary shakes requiring some touch-up, assuming the bucket of old house paint I inherited with my home purchase in '04 is still good).

Today I began the craptastic project by sanding, scraping, and power-washing some of the proverbial low-hanging fruit (the loosest chips). The reason I've named the project T09CP is because now that I have started, there's no turning back until it's done. Completely. Because I'm changing the trim color from white to green. Ugh. What have I gotten myself into???

The pictures posted here are of one window of one side of the house. A teeny tiny sampling of the ginormous project that lies ahead. Not that my house could be termed anything but "quaint," "charming," or "cute" due to its small size and stature, I do have a large section in the back that I will not be able to reach--even with my tallest ladder (which, if I'm honest, is scary as hell at the top rung), nevermind the fact that my power line runs right through it. I suppose these are bridges I will cross when I get to them. Can you tell I'm looking forward to it?

Side note: If my postings suddenly stop with no explanation, it could be because I am getting evicted for lack of paint and a total lack of curb appeal.

From a Tex Mex Food Coma in San Antonio

2009-06-09T19:35:00.000-07:00

Greetings, dear readers. I must apologize for the lack of postings in the recent days, and in advance for the probable lack of postings until later this week. I'm in San Antonio for work, on the heels of a fun-filled weekend in Iowa. And this evening, I'm sitting in my hotel room attempting to prepare for a conference tomorrow from the depths of a self-inflicted Tex-Mex food coma. Blarbagalakea (that's how seemingly normal words look in my head right now).

I will, however, leave you with a few snapshots from my stint as a tourist this afternoon (while searching for a grocery store, I popped out my camera and took some pictures--interesting side note... downtown San Antonio doesn't have a single grocery store, or so the gentleman at the five and dime told me).

Touristy photo #1--Remember the Alamo (side view) (oh, and it was closed... hence the gates)

Touristy photo #2--Super cute little artist market thingy (totally got turned around and ended up in the middle of it)

Touristy photo #3--The Infamous Riverwalk (the section that bumps up to the back of my hotel)

And finally, Touristy photo #4--Super cool gnarly tree (I saw a few of these--they look like they're straight out of a scary Headless Horseman movie or something!)

**Note--this posting was scheduled to be about traveling a week or so into treatment, but since DSO is a rock star who changed my meds, those postings will have to wait until after treatment begins on July 7**

Apologizing in advance for this post...

2009-06-04T19:27:00.001-07:00

So, I have a number of things floating around my head that I have been meaning to post. One topic is introspective, another is timely and informative. But today I have chosen to ignore all relevant postings and go ahead with this:

That's right. I'm officially a Poop Expert. Jealous? Well I'll let you in on a little secret... you can be a Poop Expert too. All you have to do is take a quiz that the Minnesota Zoo put out, which challenges you to match the pile of the stinky stuff with the animal that released it back to nature.

Think you can top being a Poop Expert? Feel free to share your poop stories in the comments section. As most of you know, I'm always happy as a pig in... well, you know... when it comes to talking about poop.

**Yes, I really am 34. I have just chosen to allow certain elements of maturity to pass me by.**

Beetlejuice! Beetlejuice! Beetle....

2009-06-02T20:03:00.000-07:00

July is the kickoff month for my Myelin Hollywood Era! And here's why...

You see, according to the information I found on the MS Society's website, the Copaxone regimen I'm due to begin on July 7 will introduce something of a "stunt double" for the myelin my body produces naturally. The master plan of these stunt doubles is to act as a front-line of defense by confusing the rogue T-cells that are attempting to obliterate my body's healthy myelin.

I liken it to some poor schlub baring her bottom for the camera so I don't have to. Ah, Copaxone--you wonderful, selfless, exhibitionist friend.

What, you may be asking, does the Myelin Hollywood Era have to do with Beetlejuice? There is a connection, I swear. Along with the new shipment of drugs that arrived (another cryptic delivery from the fine folks at FedEx) today, I also received a delightful packet of information from Shared Solutions, the support network developed by Teva Pharmaceuticals (manufacturers of Copaxone). At the forefront of this packet was the official (looking) Handbook for MS.

I'm sure you've already made the connection, but in case it is eluding you, here you go... In Beetlejuice, when Alec Baldwin and Geena Davis find themselves hurled into the unfortunate position of post-mortem purgatorial living, they are given the Handbook for the Recently Deceased. This book is designed to help them navigate through the deserts, sand-snakes, and curious goth teenagers that are included in the afterlife. Naturally, when I unwrapped the MS Handbook, the book from Beetlejuice was the first thing that came to mind. Because let's face it, nobody wants to be on the mailing list for either--and yet here we are (the Maitlands and I). If this handbook adds even a fraction of the value that the Handbook for the Recently Deceased did for them, I'm ready to rock this $hit. Bring it.

The best laid plans...

2009-05-31T20:04:00.000-07:00

I had intended to post a riveting summary of my action-packed day, which consisted of not one, not two, but THREE soccer games in gorgous, sunny, 80-degree weather.

However, after 230 minutes of soccer in the sun, my brain is like an ooey gooey glob of cooked oatmeal--and let me tell you, oatmeal-head significantly dulls a girl's writing skills.

But here's the gist of what I wanted to say--while my vision was truly suck-a-riffic for each of the three games, I feel tremendously lucky for the fact that my craptastic vision is my only symptom to date.

I'll try to expand on this topic a bit in the next day or two, when I'm forming cohesive sentences again.

Until then, I think I can actually hear my bed calling me... so good night.

Because I'm a Jerk...

2009-05-28T21:38:00.000-07:00

Yes, from time to time I find ways to thoroughly entertain myself at the expense of my dogs. But whatevs... my house, my prerogative. Note: slippery dog boots + snowpacked yard = fun times for me.

**While Minnesota is cold, I should note that this video is from the winter archives, circa December 2008. It is actually quite warm here in May.**

51 More Minutes of World MS Day--Did You Know?

2009-05-27T21:09:00.000-07:00

I just got home from a fantastic soccer game, and started flipping through some of the blogs I follow... lo and behold, it's World MS Day. To commemorate this day, MSIF and the Hertie Foundation created the following film illustrating just how varied and nondescript the physical progression of this disease (and the people it affects) can be.

A few notes from the creators of this video:

Multiple sclerosis (MS) is one of the most common diseases of the central nervous system. Today more than 2,000,000 people around the world have MS.

MS is the result of damage to myelin - a protective sheath surrounding nerve fibres of the central nervous system. When myelin is damaged, this interferes with messages between the brain and other parts of the body.

Symptoms vary widely and include blurred vision, weak limbs, unsteadiness, pain and fatigue. For some people, MS is characterised by periods of relapse and remission while for others it has a progressive pattern. For everyone, it makes life unpredictable.

This film is a joint project of the Multiple Sclerosis International Federation (MSIF) and the Hertie Foundation launched on the first ever World Multiple Sclerosis (MS) Day, 27 May 2009. It aims to capture the attention of people worldwide, motivate them to learn more about MS and become involved in the global MS movement. Show your support today! Register at www.worldmsday.org

The Multiple Sclerosis International Federation (MSIF) is the umbrella organisation of national MS societies. MSIF leads the global MS movement by stimulating research into the understanding and treatment of MS and by improving the quality of life of people affected by MS. www.msif.org

The Hertie Foundation is one of the largest private foundations in Germany. For more than 30 years the Foundation has been actively engaged in MS research and in supporting people with MS. www.ghst.de

The Scheduled Shot, Which At Once Was Not

2009-05-26T18:01:00.000-07:00

Ha. I bet you were expecting a tidy little package of info about how I'm surviving my first day of hamster ovary injections. Well guess what--I'm not!

As I have mentioned before, DSO is the man. At my appointment last week, we sat down and took a much more exhaustive look at the treatment options that are available to me. And while DSO explained that Rebif is a really good option when evaluating the three interferon choices (Rebif, Avonex, and Betaseron), there is another option that Dr. MS did not discuss with me at the time of my initial diagnosis.

Enter: Copaxone. Sweet, sweet Copaxone.

Allow me to back up for a minute and give you some background information. Another important conversation DSO and I had was about the stage of MS I was diagnosed with. He reviewed my test results, bumped them up against the MRI I had in 2005, and agreed with Dr. MS's assessment that I have MS.

From there DSO took it a step further and clarified that he believed I have been graced with a mild case of the disease. Ultimately, my symptoms have been visual, and (for the most part) are limited to situations involving intense heat, activity, and/or stress. He clarified that with the progress of my symptoms to date (much more of an inconvenience than a "disability" at this point, with at least 5 years of lesions on record), the side-effects I had a good chance of having with Rebif would likely slow me down more than the disease itself.

Copaxone, on the other hand, does not have the same side effects that are associated with the interferons (which, he explained, are similar to the cells introduced into the body the day before getting the flu--causing fatigue, muscle aches, fever, and general malaise). So while my new treatment plan consists of daily injections (instead of 3x/week), the side effects are much less severe--AND the results in clinical trials are right in line with those from interferons. Oh--and the daily injections? Frankly, I think the routine will be much easier to remember than 3x/week.

So color me happy, I have a new plan--one that is pretty gosh darn palatable if I do say so myself.

P.S. The change in treatment plans has ultimately pushed back my meeting with the Needle Advisor to July 7. Until then... you'll have to muddle your way through a hodgepodge of posts about other random topics.

Weight Lifting

2009-05-21T21:30:00.000-07:00

Today, as you know, was my appointment with DSO (Dr. Second Opinion).

Let me backtrack a little by saying that throughout the process of being diagnosed, I have felt like I have had a lot to learn, and little to give by way of knowledge or advice. Today, I am confident that I have an insightful and extremely valuable nugget of wisdom to share with anyone who is going down this road. If you are questioning your plight, or are not comfortable with the information you are receiving (or how you are receiving it):

Get! A! Second! Opinion!

It has been a crazy hectic week, and I'm prepping for a crazy hectic weekend, so I can't elaborate much now. But here's a quick and dirty summary of today's fabulousity:

I still have MS.
My treatment plan and prescription have totally changed.
Turns out my vision problems ARE in fact MS-related. Who woulda thunk.
I have a MUCH better understanding of how this disease is affecting me.
A huge weight (confusion, uncertainty, etc.) has been lifted off my shoulders.
Validation (parking and otherwise).

DSO is the man. Really. Truly. Unequivocally.

I'll share all of the tasty details when I'm back to the world of innernet connectivity next week. Until then, dear readers, I bid you adieu.

I'm Just Sayin'...

2009-05-18T20:35:00.001-07:00

Maybe it's just the perspective I have today (checkbook in hand, knot in stomach), but I think the bills are actually kicking my a$$ harder than the diagnosis did. WTF?

Photographic Debrief--My Weekend at the Farm

2009-05-18T15:08:00.000-07:00

My parents are now (as of Friday!) the official owners of our family farm--a beautiful farm in Iowa that has been passed from my Grandparents (Grandpa was born there) to my Uncle Mark and his family, and finally to my parents. I couldn't think of a better occasion to further "break in" my new camera. Following are a few of my favorite shots of spring on the farm...

Let's Make a Deal!

2009-05-15T07:44:00.000-07:00

When I stacked the two white FedEx boxes (that's right--two!) next to each other on my dining room table, it totally brought me back to that game show--Let's Make a Deal--with Monty Hall.

So without further ado, a description of the contents of boxes one and two.

Box Number One--Club Membership Materials

As I referenced in earlier posts, this is the box that contains my "welcome" packet to MS (or, more accurately, to the treatment I'm slotted to begin next week). This welcome packet contains:

A welcome brochure with information about the treatment and MS LifeLines (the support network operated by Rebif manufacturers Pfizer and Serono)
A friends and family brochure to help educate my people about what's what
A Treatment Journal to record information about weekly injections, side effects, and questions
Injection training materials, which includes a DVD with instructions on how to shoot up (er, inject--sorry) and an "injection preparation mat." Weird.

The box also contained my "Rebiject II"

With a name like Rebiject II, you know it has to be cool. Evidently, you can assemble this contraption to fashion a mechanism that will do all of the dirty work of giving myself an injection with the single push of a button. Sweet. I'm sure I'll have much more to say on this topic after I test the stuff out in roughly 9 days. In the meantime, I encourage you to think about how much fun it is to say "Rebiject" or other associated words ("Rebijected," "Rebijection," or "RebiReject;" now go ahead and make up your own definitions--see how much fun???)

And finally, the box contained my welcome kit (not pictured, because really it was just an ice pack and a foil bag with a needle disposal thingy). There's a good chance I'll be employing that puppy not once but twice in the first week following my Needle Advisory session. Go big or go home, that's what I say.

Box Number Two--The Lovely Liquids

My Rebif titration pack arrived as scheduled last Wednesday.

After I meet with DSO (Dr. Second Opinion), I will embark on my treatment journey. The treatment entails three subcutaneous injections per week. From what I have read thus far, the possible side effects associated with this treatment include:

Flu-like symptoms, including headaches, fever, malaise, and muscle aches
Fatigue
Liver problems
Injection-site reactions
Depression and suicide

Because of the possible side effects, they recommend administering the injections shortly before going to bed, so the medicated folk can "sleep off" the flu-like symptoms, if they occur. I'm thinking my plan will be to give myself the injections on Tuesday, Thursday, and Sunday nights--so I can (hopefully) have game days and weekends relatively side-effect-free!

My meeting with DSO is still on the calendar for Thursday--I'm anxious to see if he's ready to "make a deal," perhaps in the form of something behind a curtain? Or are the two boxes it for now? Oh, the anticipation... Surely I'll post.

Holy Crap, They're Everywhere

2009-05-14T10:04:00.000-07:00

For those readers who do not already know, I am the proud (?) owner of two dogs--Randy, my Jack Russell ~~Terrorist~~ Terrier, and Darby, my rescued mixed-breed.

While Darby is one of the sweetest (albeit insane) dogs you will ever meet, I'm convinced that Randy is punishment for the sins of my past.

So when I saw the headline Jack Russell Terrier Does What Neither Rain, Sleet or Snow Could Do: Mail Halted in W.Va. Homes in the news today, I was torn between breathing a huge sigh of relief (there are others who understand!), and resigning myself to the fact that this story could easily have been written about my dog.

*Sigh*

Pet Store Surrogate

2009-05-11T17:14:00.000-07:00

Finally—the posting about treatment that I have been promising! Timely, because my first month’s supply of is scheduled to be delivered on Wednesday. Then, pending confirmation from DSO (Dr. Second Opinion), I am scheduled to meet with my Needle Advisor to officially kick off treatment with Rebif on May 26. But first things first…

What is Rebif?
Rebif is an injectable prescription medication classified as an Interferon (Interferon beta-1a, to be precise). It is a “biologic” or “biopharmaceutical” medication, which means that it is derived from a biotechnological process from one of the naturally occurring interferons (types of proteins). The proteins in Rebif are genetically engineered in Chinese hamster ovaries, and are synthetic versions (comprised of the same amino acids) of interferon proteins that naturally occur in human beings. Note: While I think I got all the facts right, medical professionals should refrain from basing treatment decisions on the preceding paragraph.

Um, Okay… So How does It Work?
As I was researching information about Rebif, I noticed that there were not a lot of sites containing information about how the treatment actually works in the body. So I pulled the following (word for word) from the MSLifelines site (hosted by Rebif’s manufacturers, Pfizer and Serono):

The precise way Rebif works is not known. Interferons, like Rebif, have many actions that affect the immune system. Some of these properties are thought to maintain and preserve nerve function. In this way, Rebif may help reduce the damage to the vital components of the central nervous system. Although there is no cure for MS, Rebif has been proven to slow the course of the disease.

And Now For the Most Important Question
You are now probably wondering if, by injecting myself with dozens of tiny synthetic proteins manufactured inside Chinese hamster ovaries, I run the risk of somehow coming across fertilized hamster eggs, and will soon be carrying dozens of surrogate Chinese hamster babies. From the research I have done so far, the answer to this question is no. I will keep you posted if that changes.

What About the Dang White FedEx Box You Keep Talking About?
What about it? It’s still safe and sound in the guest bedroom... Hmm, do I sense another post on the horizon? Perhaps…

OMG (Oh My Garden)!

2009-05-07T20:09:00.000-07:00

I love surprises. Which is why my approach to gardening, although strange to some, suits me to a tee. You see, last fall I purchased several packages of bulbs to supplement the garden of flowers I acquired from the family farm. I remember being really excited about the pictures on the bulb packages--bright colors, tulips, crocuses, and tons of other stuff that I didn't know how to pronounce.

I took special care to spread the plants strategically in areas throughout the yard that were devoid of cheerful floral goodness. I truly believed I would wake up from winter hibernation, yawn, stretch, and rub my eyes--and voila, a magical field of flowers blowing in the breeze--right in my own back yard!

Fast forward to today. While not yet a magical field of color, I do have a plethora of green buds springing up all over the place. Unfortunately, I did not map out what I planted where. In fact, I did not even go so far as to note the names of the plants. And I'm pretty sure I threw out a good portion of the packages that the bulbs came in.

So behold--my magical field of mystery.

I think this one is going to be some big round purple thingy with a bunch of little blooms on it, like a floral disco ball.

And this one is obviously some swan-like, graceful deep purple lantern-like inverted tulip thingy.

And finally we have the waterslide for raindrops.

I cannot wait until these mysterious foliages flourish in their full glory so I can try to figure out what the heck they are. In the meantime, they are doing a fine job of supplementing some of my old favorites.

Oh, yeah. I still haven't tackled that big ol' FedEx box of MS stuff, now tucked safely away in the guest bedroom. But I swear, when I do... a fabulous post will follow.

Chinese Hamster Ovaries, Rebijection, and Avoidance

2009-05-05T20:56:00.000-07:00

Curious about the headline? Me too. But apparently I'm not curious enough to break into the elephant (in the form of a large white FedEx box) in the room that contains my MS Club Membership Materials (compliments of Pfizer).

When I know more, so will you... until then--goodnight.

Just because...

2009-05-01T12:16:00.000-07:00

In the midst of what has been a very busy week, it occurred to me that I been delinquint in posting on my fledgling blog (for shame!).

I know you, dear readers, are terribly distraught by the fact that you have not been graced with my wit and wisdom over the past few days, and for that I apologize. As a gesture of good will, I am including this delightful video (thanks for sharing, Kindall!) to bring happiness and sunshine back into your day. It is a song called Her Morning Elegance by Oren Lavie, and I dream of someday having the tools, talent, and inspiration to create something like this.

And if that isn't enough, I'm also promising even more fun and fabulous posts this weekend. See you then!

Happy Happy Fun Facts

2009-04-27T19:43:00.000-07:00

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!

2009-04-26T18:12:00.000-07:00

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

2009-04-24T14:52:00.000-07:00

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

2009-04-23T20:45:00.000-07:00

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

2009-04-20T20:19:00.000-07:00

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)

2009-04-18T09:00:00.000-07:00

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.

2009-04-14T22:14:00.000-07:00

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?