Out with the old...

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

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

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

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!

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

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...

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

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…

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...

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

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

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

Some Updates (Long Overdue)

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

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...

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?

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

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

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

**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

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

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…

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

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

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)

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!

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

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

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

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...

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....

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...

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...

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?

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

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

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'...

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

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!

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

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*