Monday, January 25, 2010

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!

Tuesday, January 19, 2010

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.

Wednesday, January 13, 2010

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.

Sunday, January 10, 2010

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.


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 :)

Saturday, January 9, 2010

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.


Friday, January 8, 2010

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'...


Thursday, January 7, 2010

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...