Be Careful What You Wish For


Last week, I apologized for not having much to say. Well, the universe apparently heard me. I’ve got plenty this week. Unfortunately, they are things in which it is difficult to find the silver lining.

I started my week as I  normally do, but on Tuesday evening I was at work when everything went FUBAR. As I was looking up some information about new beers we would be bringing on, (It’s a beer-centric bar.) my boss came in to inform me that I was being laid off  due to the fact that they were drastically cutting business hours. Needless to say, (even though I’m about to) I was in shock. I felt blindsided. I was unexpectedly, and suddenly, unemployed. This is a new experience for me. At 45, this is my first ever experience being let go. Well, outside of the paper route I had as a kid. Of course, that was completely merited. I hadn’t been delivering said newspapers. I learned a hard lesson back then in my early teens. Work to your best ability, or lose the job. This was different, though. I had been working hard, taking work home with me, and handling more responsibility than my paycheck would show. Still, none of that changed the fact that I was unemployed. None of that solidified a steady income. None of that kept me from having to pull out and update the ol’ resume, and start casting lines out into the disturbed waters of the job search scene.

Anyone with a debilitating disease understands the weight of the challenge of finding work, under the circumstance. Do I disclose the fact that I have MS right from the get-go with possible employers, or do I try to roll the dice by attempting to hide the fact, even though my symptoms have been rather noticeable in the recent weeks? This………..is……………..perplexing. Oh the dreaded word has returned. I promise I won’t use it as much as the previous post. (I may not keep that promise, by the way.)

Now, while still reeling from this new challenge of finding a job, I had an appointment with my neurologist on the following Thursday, two days afterward. Thankfully, Jen had chosen to accompany me on my visit, this time.

As I had said before, (and before, and before,…..) my symptoms had recently been pretty bad, due to the heat and humidity of this scorching summer. I had been shaking quite a bit, I hadn’t seen clearly out of my affected eye in weeks, tripping over my words had become a normal occurrence, numbness, cramps, and tingling had been a frequent visitor to my feet and legs, and sleep hadn’t been an easy (Damn-it. What’s the word I’m looking for, here? Not ‘event’. No, that’s not it……….ACTIVITY! That’s it!) activity to take part in.

I had recently received the all too familiar new series of MRIs, and this visit was scheduled to look at them, and go over any changes we might need to make in my treatment. As usual, it doesn’t take long for us to be sitting in the examination room with my neurologist (I always schedule early in the day. This gives the office less time to get backed up. Good tip, right there. Your welcome.), discussing the star of this blog. My MS.

I believe I had mentioned before, that currently, we knew of one lesion in my brain, and one on my spinal cord residing in the area of my neck. These new MRIs now showed that the lesion on my brain had gained a sibling. There are now two. Fan-fucking-tastic! (Sarcasm.) Plus, due to my symptoms regarding the legs and feet, another set of MRIs would be scheduled to check my lower spine, which apparently, they hadn’t looked at before now.

Now, you would think that would be plenty to deal with, but wait. There’s more! If you order now, you also get the bamboo steamer, and a handy appliance that will scramble an egg while it’s still inside it’s shell! Just pay separate shipping and handling, and it’s all yours!

Ha! I wish that were the case. I always wanted that internal egg scrambler. Unfortunately, my add on is a new medication. Gilenya. (To anyone out there who has experience with this drug, I would love to hear your thoughts.) This drug is more aggressive than the Aubagio I have been taking up to this point. For starters, it has such a high risk of causing a dangerous drop in heart rate the first time one takes it, one has to be observed by professionals for the first six hours after taking the first dose. Yay….. That sounds fun. (I don’t think I need to explain when sarcasm rears it’s head any longer, do I? I think not.)

Once again, the information book for Gilenya (Yes, I said ‘book’. This one comes with a book instead of a pamphlet.) explains, and I quote, “While it’s not exactly clear how Gilenya works,…..” So comforting. The book even supplies a web address that leads you to a site where you can “Watch a video of how Gilenya is thought to work.”

On top of the heart rate situation, other side effects listed include elevated risk of infection, macular edema (vision related), breathing problems, liver problems, nausea, stomach pain, loss of appetite, skin or whites of the eyes turning yellow, headache, flu (flu!?!?!), back pain, cough,……etc, etc. It’s no wonder I feel like Charlie Brown, and the universe is playing the part of Lucy, pulling that fucking football away, causing me to end up on my back, fighting to force air into my knocked out lungs. Tired. Frustrated. Struggling against the feeling of defeat.

These are the times when good friends are made clear. Luckily, I have them. That’s what is holding me up, right now. I’m holding on to them, and they are standing strong. Jen being first in line. I don’t know how she does it. She’s something special!

So the rollercoaster ride continues, even if it feels a little like the cars are struggling to stay on the tracks. I’m sinking lower into the seat with a vice like grip on the lap bar, ready to hurl. A smooth ride ahead, not looking likely. Better get a bucket. I’m gonna throw up. (A little Monty Python reference there for Brit comedy fans.)

I’ll let you know how the new medication pans out, and how the job search is coming along in the coming weeks. Until then, cross your fingers for me, if you will. It might get rough. Hey. At least I kept my promise. I didn’t overuse the word ‘perplex’.

I’ll see you next Tuesday.

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