Between figuring out ways to deal with the symptoms that the MS Monster hands you every day, to juggling a full-time job with mothering two kids, to training to become a part-time Camp Gladiator trainer, to keeping the dog alive - there are a lot of things on my proverbial plate right now, and blogging is usually not at the top of that list. Here are the most recent updates!
Since the ENT didn't find anything to explain the hearing and increased vertigo, my neuro sent me for a new brain MRI. They always do MS MRIs with and without IV contrast, which is not really fun, but it isn't horrible. You get used to these things after a while. I counted up the total number of MRI scans I've had in my life, and I got quite a few over the years: 1 for my knee, 3 for my spine, 1 for my sacrum, 3 for my brain - 8 total. You get used to being very still, even when it gets REALLY uncomfortable...or your nose starts to itch.
This MRI was set up with an MS protocol, which was not the case with the November MRI, which showed the lesions that led to my diagnosis. I also got this one done at a different location, so it was a different machine. This led to the two scans being somewhat difficult for me to compare, since this one was so much brighter (and the views were different). Thankfully, the report was done by lunchtime the next day, so I went by and picked it up at lunch. Usually, I'm pretty good at breaking down the terminology in these reports, thanks to my years working in a medical office setting. This one wasn't that easy, though. Finally, I heard back from Emily (my favorite nurse at the neuro's office) and she told me that they "didn't see any changes," which means the MS is "stable" at this point. This also meant they found no reasons for the hearing/vision/vertigo issues. They said they could prescribe meds if it didn't "go away," but I said I would just tough it out. You get sick of adding new meds to an already packed medicinal regimen, so sometimes you just choose to live with it. That's how I am with my nerve pain. Two of the three nerve pain meds caused bad reactions in my system, so I'm not really anxious to try the third med. I just do what I can with the meds I have for now...because you get tired of feeling like a test subject after a while.
I've been having horrible migraines here and there...one lasted an entire 24 hours, and it actually got WORSE when I took the prescription Imitrex that they gave me for my headaches. I've read this can happen with Imitrex, so I wasn't surprised. I had to leave work and go home for the rest of the day...it was so horrible. (Do you see now why I don't like adding new meds??) I've had more since then, and they suck, ya'll....but I'm just trying to handle them with caffeine, ibuprofen, tylenol, whatever I can while at work or out and about with the family. I try to minimize activity when I have them, but that isn't always possible.
Here's the thing, guys: Sometimes, MSers just get headaches. And sometimes, we have hearing issues. Or vision issues. Or leg weakness and pain. It just happens with this disease. There isn't always a set pattern of when it will happen, and it's usually not very predictable. I like to say that the one predictable thing about MS is its unpredictability. Maybe you have to cancel plans because you suddenly feel like shit...it's not personal, it's just the disease. It doesn't mean we just changed our minds and want an "easy out" for a prior commitment. It just means that we got thrown an MS-curve ball, and now we have to adjust for it. It's just the way life goes.
My friend Alex King posted something on her Facebook page today about how people with MS sometimes handle their disease, with a "poor me," attitude. I responded with this (and she and I agreed I should blog it, lol): "It is definitely a tough adjustment, and I alternate some days (in these early stages of DX) between being pissed off, sad, happy, relieved, depressed, and exhausted...mostly exhausted. LOL...It's been a really hard period for me to get used to this being my present and my future. But, in the end, life goes on all around me - with my babies, my job, my husband, my passions in life. I can either give up and take up permanent residence in a place of sadness...or, I can live with the acceptance of this roller coaster as normal, and try to make the most out of all the good moments. I'll do what I can, for as long as I can, until I can't anymore."
That's it, folks. That's how this disease works. Just because we take Disease Modifying Drugs doesn't mean that we will necessarily start feeling better, or that our symptoms will go away. Our symptoms are usually the result of damage that has already been done to our nervous system. Until they find a cure for MS, not all of this damage will be undone. My DMD is supposed to be giving my nerves a break from the constant attacks of my immune system, so that (hopefully) a few lesions may have the chance to remyelinate...or at least I won't get as many new lesions. But the symptoms will remain, in most cases. It's just what happens in the course of this disease...and, as much as I hate it, it is what it is, to be honest. I just appreciate the "not so bad" days that much more.
Like this past weekend with my family - we made so many memories this weekend, despite the migraines and nerve pain and crazy weather!
On Saturday, we took Lily and Eli to the park where Lily had a play date with her classmate, Alexandria, who she told me is now her "BESTIE." This was good for me to hear, because she's been struggling with friendships, apparently. Later that evening, we took the kids to church for Easter service, then had some Chipotle for dinner. I love their bowls, and they're not too bad for you either. After the kids went to bed, Corey and I stuffed Easter eggs and filled their Easter baskets for the next day.
They slept until about 7:30 on Sunday, when we got them up to see what the Easter Bunny had brought for them. Eli told Lily that the Easter Bunny came down the chimney, but Lily swore he came through a window. Every time I would refer to the Easter Bunny as "him," Lily would say "or her." She is the epitome of girl power...she comes by it honestly, though.
We then went out into the cul-de-sac, where Corey and our neighbors had hidden hundreds of eggs for our kiddos to find. We did this last year, and they all love it. Lily helps the little ones find eggs for their buckets, and then they have candy for about 6 months afterwards.
Lunch was great, and then we came home for naps (yes, I also took a nap, naturally), followed by a short trip to Wal-Mart (ugh...I seriously hate going to Wal-Mart these days), and then back home to prep for the week.
Have a great week, ya'll! Hopefully I'll get another post in before the week is up...:-)
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