Showing posts with label RRMS. Show all posts
Showing posts with label RRMS. Show all posts

Wednesday, October 19, 2016

A Little Something Personal - My 2016

Hey there, everyone! I know you've probably been missing the heck out of me, but it is what it is. Figured I'd share...

I'm not usually a public person, so these things won't be easy for me to click publish on. If you're reading this, I did it, and it was scary, but I did it. Enough lead in, you're all aware I hate too much description, so let's just dive in and get to the root of the issue. This post will be long (you've been warned). Feel free to leave now if you're not in the mood to read some author's raving ramblings.


Here we go...

So, this year has sucked in so many ways. Don't get me wrong, there were AWESOME times to be had (and you've seen the pictures, so I have proof), but those posts have been done, and this isn't about those things that have been keeping me sane. This is about the other side of life, the dark side, the side I don't ever want you to see and try to shield you from.

But perhaps you should see and understand. Understand why I didn't give up, have a full grasp on exactly what it was I was fighting through, and perhaps walk away with a different outlook on things.

Back in the earlier parts of this year, my vision started to go crazy. My eyes were jumping all over the place, and I couldn't understand what the heck was going on. So, I went to the optometrist and got new glasses (I had an astigmatism before, but it was very slight). They didn't help. Nausea, memory loss (seriously, it was bad), and fatigue were becoming my best friends. Maybe not best friends, but you know the those folks that hang around, and because you can't get rid of them you kind of accept them for those quirks that drive you nutso? Yeah...

Anyway...

I'm the lady who gets my butt out of bed at 6am every day and refuses to go back until it's time to sleep. This was a life and schedule altering experience for me, to say the least.

Also, around this time, my husband was diagnosed with testicular cancer. That, in and of itself, was a journey, but it's not my story to tell, so I'm not going into it other than to say he's okay for now, and the doctors are keeping a very close eye on him. It pertains to my story only because it was near the end of his whirlwind of crazy that things with me got really bad.

One of my sons graduated high school this past May. We flew to his home, took him to dinner that night, attended the ceremony the next day, and got on an airplane later that day to come back to Georgia. While we were on our trip, I kept falling asleep. In the plane (NEVER), in the car (also NEVER), and I could barely hold my eyes open by the time we got back home.

About twelve to fourteen hours later, the vertigo hit me. It was the worst feeling I've ever had, and it took me down hard. I could barely get off the couch, I had extreme nausea, and all I wanted to do was...

You guessed it! Sleep.

So, to the doctor I go. First one tells me it might be BPPV, but she's not sure because I was on a plane and could just have a twinge of inner-ear crap from the pressure, and the feeling should clear on its own if that's what it is. I super hydrate and take a lot of Dramamine. A week later, I still feel reallllly bad, so I go to another doctor. This one also tells me it's probably BPPV, but to keep an eye on it and see if it doesn't clear up in a few days. He also does some blood work. Nothing alarming, so I'm really confused at this point.

Allow me to interject: I can't look at a computer screen or book for more than five minutes without wanting to hurl. Got that? Okay. Moving on!

I finally email him and ask what to do now, because it's been weeks, and I still feel like I'm on a tilt-a-whirl.

He says, "You should consult a neurologist."

Okay. I've got this. After a search of my insurance company's database, I find a neurologist close by and make an appointment. She can't see me until July. Great. Ugh.

I also can't travel, and my step-daughter gives birth June 28 to a gorgeous baby girl. I have to freaking miss it. All of it. Damn.

Finally, I get my appointment, my neurologist and I go through the story, and I tell her all my symptoms. She seems chipper, and does a billion tests in the office before sending me to an audiologist to make sure there's nothing going on with my inner-ear.

I'm also scheduled for an MRI of my brain.

By this point, I feel a lot like a pincushion, because everywhere I go they seem to want to stick me with something. I'm also freaking out because I want some freaking answers.

I'm interjecting again here because you gotta understand needles are one of my biggest fears (next to cockroaches--shivers), and that I'm still feeling dizzy as hell and unable to focus.

I have a release deadline coming, and I'm working on the new F5 project (when I'm able) while all this is happening. Words to describe my level of frustration don't exist.

I am an author. I want to work. I need to work. My work is my sanity.

And I couldn't work because I couldn't focus without getting sick as a dog.

Now, by that point, I'm stressed, but I have things I have to do on top of things I want and/or need to do. And I fell behind. But not once did I give an excuse, and I fought like a tiger to finish things I'd promised--and succeeded. Other things that weren't as important as business dealings were let go for a while. You blog readers probably noticed, eh? *grin*

Anyway, once I saw the audiologist, I was prescribed physical therapy. Oh, man! Sick upon sick upon sick every time, but things started to get better. I was able to read again without yakking or getting dizzy.

Results time comes around! Yay! I went back to the neurologist, and she tells me there are several lesions on my brain, but she wants me to have an MRI of my cervical spine and a spinal tap done to confirm her suspicions. Pages of instructions are given to me, and the lumbar puncture is what seems rather terrifying.

Gah!

But I do it, and as always, since everything kicked up, my husband was right there by my side, giving me encouragement, taking care of me and the kiddos when I couldn't do it myself.

I know I've said it before, but he's the best husband in the world. Seriously.

I digress...

So, on to the spinal tap results (which take for-e-ver, if you didn't know). When my doc gets them, she calls and backs my appointment up quickly.

Alarm bells...

I did my research (after all, I'm an author, and I look everything up), and I know what she's looking for, and all signs point to YIKES!

From May to September, I was sick, and I had no idea what was happening to me. Keep that in mind. While all this is happening, I'm still forcing myself to work as much as I can, do the things I can do, and trying to stay positive.

September 13, 2016, my neurologist gave her official diagnosis. I have Relapsing-Remitting Multiple Sclerosis. Treatment: an injectable drug.

Could've been worse, but even thinking about sticking myself with a damned needle freaked me the hell out. I'm faced with three times a week, every week, for the rest of my life.

Now, I'm feeling much better, though there are still things that aggravate my situation. My medication is kicking its way into my system with gusto, and my head is a helluva lot clearer. I can read again. I can write again. Most of all, I can think again.

To put it in perspective, that deadline I was talking about has since been met (it's with my editor now--as of Monday), and my project ended up just over 60k words. Before I got my meds? I was sitting at 12k and worrying I was going to have to fight to finish on time. Come hell or high water, I was getting that damned book written!

Along this whole journey, and through my life, here are some things I learned:
  • My husband is AWESOME, and I wish everyone had someone like him.
  • Never take anything for granted. Just because you can do something you enjoy today, doesn't mean it will be there tomorrow.
  • Life is meant to be lived. Take every joyous moment and hold onto it like you'll lose it, because you might.
  • Never give up. Fight like hell to have the life you want.
  • If something isn't working, find a way to change it.
  • Try to look on the positive side of things. My diagnosis could've been much, much worse.
  • Tell people how much they mean to you as often as you're able, and try to be kind.
  • Don't ever let anyone make you feel less than you are or make you feel guilty for not doing what they want you to do. You're not a puppet on a string.
  • Be your own biggest cheerleader.
I've had a month or so to wrap my head around all of this, and I've decided to take every blow as it comes and not wallow in despair or pity. There's no time for that when I need to be living.

So many exciting things are coming, and I feel so lucky I'm going to be able to bring them all to you.

It may take me time, but hang in here while I get back on my feet. 2017 will rock!

No, I didn't owe you an explanation, but I thought it might do someone some kind of good to see that there are people out there who don't give up when things get hard. This isn't an apology for not posting. When things get tough, my blog is what gives. It is what it is.

I am not my disease, and I don't want pity. There are people out there who have it far worse than I do, and I count myself lucky to have had such amazing people (tooooo freaking many to name here) and doctors in my corner looking out for me. This was just my story, and because I'm a storyteller, I told it.

I hope you got something out of it.

Well, that's all for today, folks! Until next time, WRITE ON!

Jo