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...

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).