I swear to God, if this heat doesn’t let up soon, I’m going to end up as a pool of semi-sweet chocolate on the pavement. It seems to be inescapable this year. It feels heavy on my shoulders. It makes me feel cooked to the point of being hollow. My mind is continually foggy. I haven’t seen clearly out of my right eye in almost two weeks. I’ve had so much water to drink recently, that I think I have raised the water content of my body by at least five or six percentage points. I’ve been wearing light clothing, and my cooling neck wraps, but nothing seems to be able to combat the negative, fatigue inducing swelter that this summer has quickly become. I honestly don’t remember ever hating hot weather so much in my forty-five years on this planet. I swear I think I saw Satan standing on a street corner with a ‘The End Is Nigh’ sandwich board, dousing himself with ice water in a kiddie pool while eating an ice cream cone, and standing in front of a mist fan. I swear I did. When I walked up to him, I said, “What’s the problem? I thought you’d be used to this.”, he simply flipped me the bird, said “Fuck this. I’m going home. You fuckers win.”
So……we beat the devil at his own game. Can we turn the heat down now?!?!?
There we go. I got my heat wave rant out of the way. It needed to be done. A moral imperative!
Well, as some of you know, I was waiting on some results from MRIs recently. Good news there is that no progression can be seen in the lesions that were there in my last MRI. So, for now, my medication will stay the same. It seems the Aubagio is doing it’s job with nipping progression in the bud, but it doesn’t seem to be stopping the effects of the symptoms.
I’m guessing it’s this heat. I remember last year, right after I started taking Aubagio, I felt loads better………until the heat of summer arrived. Therefore, I am faced with a dilemma. Yes the drug is stopping progression of the disease on film, at least, but how much good is it if I still feel crappy?
So, what I’m faced with here is, do I keep on this route with Aubagio a while longer to see how it pans out? It does take quite a bit of time for the drug to fully become entrenched in the body’s system (It even takes at least two years from stopping intake until it is fully out of one’s system.), so maybe it just needs more time to grab a tight hold on the symptoms. Or, should I push my medical team to suggest something else that might tackle the outward effects better, but may not fight progression as well, and possibly give me side effects that I don’t experience on the Aubagio?
Should I possibly go get another opinion from another neurologist? I’m not thrilled with that idea. It would feel like starting the whole process all over again.
As many people who know me understand that I do have some OCD tendencies, and not a big fan of changing a routine, once I get settled into one, I am highly perplexed by this. I am so perplexed by this, I am using the word perplexed far too often. This perplexes me. Are you perplexed by my use of the word ‘perplexed’? I, for one, certainly am. I wouldn’t hold it against you if you were, as well. Perplexed, that is.
I’m just really at a loss, here. I don’t like not knowing what to do. I think I may have mentioned that before.
I’ve been looking into holistic/natural options, recently. I’m only a couple weeks into trying a regimen of natural supplements and such. At this point, I’m not really noticing much of a difference, if any, but the doc we are going to is telling me that he is noticing a difference in the way my body is responding to external stimulation. (No stimulation jokes, friends of mine I know have a hundred or more jokes going through your dirty little minds right now. Okay. Maybe a couple.) I just don’t know if anything is helping at this point.
Sometimes I think, yeah, I’m feeling better. I’m just not sure if I actually am. According to my mom, whom I’ve mentioned in earlier posts, has gone through some pretty gnarly health issues these past few years. When she started feeling better, it was a completely obvious change. She felt better, and she knew it. Clap your hands!
Now, I know I shouldn’t be comparing my experience with someone else’s. Especially when it’s a completely different medical situation all together………I’ll pause for my ‘Airplane’ loving fans to repeat that. It’s just…..if treatment is working, shouldn’t I feel better?
But that brings me back to the heat situation. There just doesn’t seem to be a way for me to escape it. Well, there is moving to a more temperate climate, but that would be a complete upheaval of our lives, as if there hasn’t been enough of that for us ever since the onset of the disease in January of 2015, and the subsequent diagnosis a few months later in April. Our lives have already been up-ended in so many ways, I can’t imagine trying to make a change that large. Once again, it would feel like starting over from the beginning. We’ve got enough ‘different’ in our lives to deal with as it is.
I’ve been recently looking into cooling vests online. Has anyone out there experienced using one of these contraptions that could give me some insight on whether or not they are worth the cost? They have piqued my interest, but let’s be honest. Vests went out of fashion sometime before Y2K. I would start looking like a 90s keyboard player. You know the type. The guy that lugs four keytars around from gig to gig, but only pulls one of them out when the band plays a Harold Faltermeyer tune, or a Jan Hammer ditty. (Youngins, ask your parents who that is.) So, if I went with a cooling vest, I would be cool, but I would not be cool. Not by any means. Just like a 90s keyboardist. Yeah, he’s in a band. But he is the keytar player in the band, wearing a vest. See. Perplexing.
I have been using some cooling neck wraps. Let me tell you, those make you look a little odd as well. Mine are black, so it makes me look like I might be mourning the death of Freddie, from the Scooby-Do cartoons. Poor guy. Probably killed by what he thought was a ghost, but was actually old Mr. Atherton who was trying to frighten away the rich city folk who were looking to buy his land for cheap. Freddie was just one of those meddling kids who was in the wrong place at the wrong time, chasing an old man in a sheet, fell down a trap door and snapped his bandana wrapped neck upon landing. He should have just tossed Scoob and Shaggy a Scooby snack and let them do the leg work. They probably would have fared much better in the fall, being so relaxed and limp from the massive amounts of weed they had to have been smoking.
Oh………wow……….sorry. Tangent! Told you the heat was messing with me. All seriousness aside, I’m thinking of becoming a nudist. At least within the confines of my home. Which is were I prefer to be these days, anyhoo. Just the thought of stepping outside is exhausting. I know what’s coming. Blurred vision. Fatigue. A cloudy mind. A literal, hot, sticky mess. It makes it difficult to be social. It’s difficult to carry on a conversation when one can not remember what the conversation is pertaining to while one is in the middle of discussion. It’s just easier to deal with the TV screen instead of a real, live, human being. With TV, it doesn’t matter if you can keep your attention focused enough. Hell, you can completely zone out to the point of virtual unconsciousness, come back to it later, and it’s like you are watching it for the first time all over again. Lots of re-watch value in it, and very little embarrassment. It’s one of the reasons one of my main ‘outings with friends’ activities is going to a movie. I get to hang out with my pals, but everyone is focused on the movie instead of me. I like that, these days. I can see a film with a friend or two, end up zoning out during part of it to the point I can’t remember what occurred, go back and see it with someone else a couple days later, and enjoy it for the first time, all over again, with them! Gotta find the perks, right?
Well, it’s obvious the heat is really beginning to mess with my thought process, so I think I will end this blabbering for now. Until next week, try to stay cool in more ways than one. Oh, and if you run into Mother Nature, kick her in the crotch, tell her to get her shit together and off of the crack. She’s really been mucking things up, but she did send Satan back to the relatively more pleasantly temperatured Hell. So……she’s got that going for her.
Oh, and one more thing. PERPLEXED!