I'm back, bitches*

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...

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

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)

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...

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

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

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...

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.

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...

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.

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.

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.