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Rashaun M.

Hurry Up and Wait


Wow! Trust me when I tell you, I am well aware of how long it's been since I've posted. I've been thinking about it a lot in the past few weeks, and every time I've been perched over the keyboard, ready to put something out, I've run into the same barrier. Namely, that there hasn't been much going on. Now, in my humble opinion, that is a good thing. No news, in this case, really does happen to be good news. Other than a couple of minor issues (which I will detail shortly), the MS has been pretty quiet. Kind of an elephant in the room, certainly. But generally, a heavily sedated elephant. At some point, the sedation will wear off (which incidentally, has already happened), and I'll have to deal with that. Fortunately, when the elephant did wake up, this most recent time, he was pretty groggy and didn't have the opportunity to do much damage.

I suppose now is as good a time as any to explain. Basically, shortly after my last post (so late March/early April), my right leg started tingling. It basically felt like my leg was asleep. Pretty much the entire leg, with a few areas featuring a more prominent tingle. My foot was really numb, and the front side of my shin from about the ankle to the calf, was particularly tingly. In addition to the general feeling of having that limb feel like it was asleep, that area felt like I had a sock on, whether or not I actually did. Kind of annoying, but hardly anything crazy.

I tried to wait that out, as it wasn't painful, and didn't affect my walking. At some point, my trying to wait it out, had taken the better part of a month. And so, at the insistence of Danielle, and a friend of mine who is a nurse, I called my neuro. I laid out what had been going on, and while he did believe that it was probably a flare up, he recommended that I just wait it out. His rationale was that if I wasn't in any pain, and it wasn't affecting me otherwise, that it was best to just grin and bear it. He added that I could be admitted to the hospital and given the IV steroids again, but really all that would do is knock out the symptoms faster, and on the down side...I'd be hospitalized again. We chatted a little longer, and he said that at my next appointment, which will be in a couple of weeks, I would likely get another MRI, which would serve to confirm any flare ups since my diagnosis, and see how the medication is performing.

A few weeks later, I was pretty much back to normal. All told, the tingling lasted almost seven weeks. On the one hand, I know that seems like a long time, which it was. But I see that as my first post-hospitalization test of living with new symptoms. I mentioned in a previous post, that I was concerned about having a new symptom emerge and not recognizing it for what it was. My concern then, was that in ignoring it, or simply not recognizing it, that permanent damage could be done. The reality, like most things, lies somewhere in between. While it's true that ignoring a symptom could have damaging effects, it's also true that a symptom could pop up for a very short period of time before fading into the background, and still do permanent damage, either immediately, or down the line. It's really a balancing act combined with a game of chance. Deciding what I can tolerate, while simultaneously hoping, regardless of my tolerance, that it doesn't become permanent. And then on top of that, not second-guessing myself as to whether it might not have been permanent, if only I had...

It's really kind of exhausting sometimes. Anyway, that's that. As for the other minor annoyance, I was without medication for something like ten days. When I started the Tecfidera, I received the initial supply via UPS, about a week after I was released from the hospital. I received the next month's supply automatically. So, naturally, I thought that's how it would go. Not so.

As I was getting down to the last week of meds for that month, I still hadn't received the next 30-day supply. I tried calling my neuro, but he was out of town (Memorial Day was coming up). I then tried to get in touch with the other neuro who initially diagnosed me, and was eventually succesful, although at that point, I had already been out of meds for maybe three days. It was another week before they arrived. And I should note, that I was about five weeks in to the tingly leg thing, at that point. Needless to say, I wasn't a happy camper.

On the plus side, being without the meds didn't seem to have an adverse effect. That said, I will try not to test the limits of that again. To that end, I now refill my prescription online, when I get down to about a ten to fourteen day supply.

All in all, things have been pretty decent though. I still get the tingling along my spine every now and then, but it's been a few months since the slurred speech accompanied that. I still smoke, though not nearly as much as I had been. I really did give it a good try, to quit completely, but as I've mentioned previously, my heart was never in it. Someday, I will quit for good, but I'm just not there yet.

I did find a new job, which is nice. Being homeless just wouldn't suit me. My general temperament is one of slight annoyance, and starting off each day, already irritated, would negatively affect my panhandling abilities, I would think. These days, though, I'm working as an electrician's apprentice, so no more restaurant/bar industry, although some friends of mine will be opening a new place, and if they ask, I'll probably work a few nights. I have to say, I really don't miss it much though, which is rather surprising, as I had always thought I'd be a lifer.

My next doctor's appointment is this week, with the eye doc. My vision out of my left eye is still hazy. Whether or not that is a symptom...which it probably is, that one is minor enough that I can tolerate it. Especially considering that not so long ago, I couldn't see straight, at all. I have pretty much resigned myself to the fact that this particular issue is likely permanent, and will likely, eventually require glasses. Can't really say that I'm thrilled about that, and when I meet with the ophthalmologist, I'll raise the possibility of Lasik. Can't hurt to ask.

So in the meantime, I guess I'll be waiting for whatever comes next. I will say, the waiting sucks. I'm much more of a proactive person, in general, but when you're dealing with something that is not only unpredictable, but kind of has a mind of it's own regarding what it will do, and when it will do it, it makes it difficult to try to get ahead of it. Such is life. If I get knocked down at some point, I'll get my ass back up. I've never particularly liked being told what to do. Not by people, and certainly not by some disease.

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