Life Update: I’ve Never Felt More Trapped In My Own Body

As someone who has suffered with panic disorder for over a decade, I’m very familiar with the unsettling feeling of being trapped inside your own body.

When I’m having a panic attack, I’m fully aware of what is happening. It is not an out-of-body experience. In fact, it’s quite the opposite. I’d much prefer to be anywhere but in my body when panic sets in and I know I’m in for the crashing-plane-feeling of a panic attack.

It’s that exact feeling that has been hanging out in the back of my mind as I’ve slowly started compiling symptoms that I’ve had for years.

It all came to a head at the end of September when I had what I thought was an ocular migraine. I don’t usually get migraines often. Headaches? Yeah, all the time. But migraines are few and far between.

Then, that last Friday in September came and I had the weirdest migraine I’d ever had. Suddenly my vision was skewed, as if I’d looked up and the sun and back down, but couldn’t clear the dark blobs in my vision. Luckily, I’ve heard about ocular migraines before, so I took some medicine and quickly left work before it got worse.

And it definitely got worse.

And since then it’s as if that migraine barely left.

The entire next week I had light sensitivity and headaches. My vision returned to normal, but my eyes were even hurting.

I went to a walk-in clinic who prescribed me migraine medicine, but told me I probably shouldn’t be at work when I take it because of my side effects (so, I didn’t take it).

I went to an ophthalmologist the next day, who told me that my eyes looked healthy, but she started asking me odd questions about my medical history.

Your hand has been tingly and slightly numb for two years? Tell me more about that.
Is it in only one eye that you have the pain?
Have you noticed any discoloration in your vision in that eye?
Has your vision decreased in that eye? Or become dimmer?

Ultimately, though my eyes looked healthy on her end, she insisted I see a neurologist. I took the card for the neurologist she recommended, and went on my way.

Her leading questions, though, stuck with me and I did the unthinkable… I took to Google.

And that’s when I came across Optic Neuritis.

“Optic neuritis is an inflammation that damages the optic nerve, a bundle of nerve fibers that transmits visual information from your eye to your brain. Pain and temporary vision loss in one eye are common symptoms of optic neuritis.”

Optic neuritis had a lot of the same symptoms that I was having, minus the vision changes. This was the only thing I could find that listed symptoms I was having and as I was researching it further, I came across something even more unsettling… Optic Neuritis is often a sign of Multiple Sclerosis.

Of course, I started digging into MS and that’s when things got scary. My tingling hand, that time my entire left side went numb and tingly, the ice pick headaches I was having a few months ago, frequent UTIs… these are all symptoms of MS.

I stopped researching MS altogether when things started getting scary. I didn’t want to scare myself without knowing for sure, but I also wanted to find out some answers. So, I did a little research and found a neurologist about an hour away from where I live who specialises in MS.

Here’s the thing, MS is really hard to diagnose. Doctors have to cancel out every other option before they can determine it is MS, so I wanted to go to a neurologist who knew exactly what to look for.

Of course, this was the beginning of October and I couldn’t get an appointment until November 11.

Ok, I thought, well, I can deal with the eye pain and migraines until then.

But then, the following Wednesday, my vision started to change.

It’s hard to describe, but it is as if there was a gray screen in front of my right eye. I was seeing flashes of lights in only that eye.

After I went to Shameless Book Con in mid-October, I ended up in the ER.

My vision had changed pretty significantly within a week and a half and it was pretty scary.

I decided to go to the ER at the hospital that the MD neurologist was associated with so that my records would be available to him for my upcoming appointment.

I was pretty relaxed going in, I purposely went at a time when I didn’t think it would be busy and I fully understood that they would likely admit me and do all sorts of testing. Despite my tendency to be anxious, I wasn’t really in this situation. Surprisingly, hospitals and doctors don’t really bother me at all.

That is… until they put some medicine in my IV that I still am not sure what it was. They told me it was for my headache, but I have a feeling it was some sort of steroid.

I was fine as they put in my IV (despite some difficulty), when they took blood, and even when I got a CT scan, but about 20 minutes after they administered the IV medication, I started feeling my skin crawling and a desperate feeling that I needed to get the hell out of that hospital.

It didn’t feel like my normal panic attacks, it felt like it was right under my skin. I began shaking, my heart rate spiked, and when the ER doctor (who was abosolutely lovely, by the way) told me she wanted to admit me and possibly keep me overnight for more testing and to see the neurologist and ophthalmologist, I couldn’t say yes. I had to leave.

And I did. I ended up leaving against medical advice.

With a “normal” panic attack, just signing the discharge papers would’ve cured the anxiety, but because this was medically induced, that skin-crawling, I-need-to-escape feeling stuck with me the entire day. Even when I was in my pajamas in bed at home.

The ER doctor instructed me to try to get into my MS doctor’s office sooner and she also wanted me to see an ophthalmologist (again) and another neurologist. I consulted with the MS doctor and he added me to their cancelation list and told me to go ahead and see the ophthalmologist again, but not to worry about the neurologist.

So, I saw the ophthalmologist, who basically said the same thing as the first. After doing all sorts of tests, he told me that my eyes looked healthy in the areas that he could see, but he couldn’t cancel out Optic Neuritis or MS – I’d need an MRI for that.

The MS doctor ended up ordering me a MRI and a VEP, both of which I scheduled before my appointment with him.

And that’s where we leave off in this story. I had my MRI on Friday and I have my VEP test this coming Thursday.

And I’m feeling… I don’t know. Nervous? Sick of feeling headachy all the time? Sick of having trouble seeing out of my right eye? And, honestly? Slightly hopeless. Just a touch. Because even if I am official diagnosed with MS, there is no cure. You can somewhat treat the symptoms, but I just… I don’t know. It’s scary and it’s hard to even wrap my head around.

I want to be that person who is brave, who powers through and stays positive… and that’s typically how I am, but I can’t help spiraling sometimes.

If this is MS… suddenly the future is terrifying. What will it mean for my husband? For my kids? For my career? For my mental health?

I want to be positive. Not just for myself, but for my family and friends. I want to inspire people, not depress them…

But I’m just not there quite yet. My body feels like it’s failing me and I’m trapped inside of it.

For now, as I often do… I’ll employ the good old “fake it til you make it” state of mind. I’m great at plastering on a smile and going about my business, pretending that I am that positive person. The one who can find the light even in complete darkness. And maybe, eventually, I’ll actually become that person.

Where I’ve Been…

Oh, hi there!

You may or may not have noticed a bit of a dry spell here on the blog and over on my YouTube channel.

As with my previous hiatuses, this one was entirely unexpected and, thankfully, not for a bad reason at all.

First, I went on vacation the week of my birthday.

And while I fully expected to have a ton of downtime while my family and I vacationed at my friend’s condo on the beach, all I did was lay in the sun, swim, read, and spend time with my family. It was absolutely glorious and perfect.

 

Then, as soon as we got back, we started working on replacing our floors.

My sister and her husband could basically star in their own HGTV show because they’re so freaking talented when it comes to home improvement projects.

I left the floor replacement to them, but I helped by re-painting all of our baseboards and doors. (I’m terrible at DIY stuff, but they turned out ok… if you don’t look to close LOL! Meanwhile, our floors are perfect.)

It’s an incredibly slow-moving project because my sister and brother-in-law both have full-time jobs, so we’ve been doing one room one day per week. Right now only the girls’ room and the bathroom are finished.

This weekend we move onto the playroom.

We had every intention of starting in my library (which is where the front door and dining room is located), so I packed up ALL of my books and moved all of my shelves away from the walls to remove the baseboards… then we found out we had mold and had to get insurance involved.

Instead, we moved to the girls’ bedroom and are working our way from that side of the house while the mold issue is getting taken care of.

This means that I haven’t filmed in weeks since my beautiful background is a hot mess until we get to the library and everything gets fixed.

Our house has been absolute chaos. Each room in boxes and shifted around as we work on the floors room by room.

Now, I’m the youngest of four and a Gemini and a general chaotic mess in general, so it doesn’t really bother me. In fact, it’s given me a chance to go through and reorganize and unhaul a ton of unnecessary stuff. (Especially in the playroom).

I’ve been able to donate BAGS of stuff to our local thrift store and after cleaning out our hall closet last week, I was able to donate four bags of blankets to our local animal shelter.

The playroom had so many unused toys that the girls have grown out of that we donated this week as well.

As far as reading goes…

I’ve taken on the task of participating in my very on Mariana Zapata Reading Challenge.

This isn’t actually a real thing, I just felt like re-reading all of MZ’s books, so I did. I read every single one. Now, I’ve read The Wall of Winnipeg and Me about 3,000 times, but all the others I’ve only read once MAYBE twice, so going back into her backlist has been so refreshing.

I was in a bit of a slump, so it was nice to be revived again.

Mariana even let me know on Twitter that she’ll be out with a new book soon, so I’ve prepped perfectly!

Screen Shot 2019-07-05 at 4.15.51 PM
PS follow me on Twitter! @inloveandwords

I’ve since moved on to reading The Mister by EL James because it became available at my library and I’m so deeply disinterested in the story and characters so far, even though I’m about 20% in.

It should be noted here that I was not a fan of Fifty Shades of Gray, however, I read the entire series and I ADORED the movies. I felt like the movies were cast well and, more than anything, the cinematography and score was absolutely stunning.

Anyway, I’m hoping to get back in the swing of things here on the blog and over on my BookTube channel. I have some pre-recorded stuff I can edit and put up while I search for a place in my crazy house to film!

I love and have missed you all! Please tell me what you’ve been up to!

Just A Little Update :)

Hi there, friends! It’s been a while since I’ve posted, so I wanted to pop in and say a quick, “Hello!” and give you a little update before I begin with my regular blog posts again.

When we last spoke, I was at least 10 books behind in my Goodreads Challenge. I knew setting a goal of 150 this year was going to be difficult, but I wanted to challenge myself. Last year my goal was 100 and upping the goal by 50 was a stretch I was willing to make.

When November rolled around, I finally got over a MEGA book slump and started reading like crazy. So much that I neglected my blog to do it, and while I missed chatting with you all, it was nice to focus on reading.

Over my Thanksgiving vacation I read 11 books in one week! It was insane, but so awesome! I haven’t binge-read like that in a long time and I didn’t want to stop.

Every spare moment I’ve had, I’ve been reading and now I’m only 2.5 books away from my goal (I’m about to finish another book today!)

Once I hit my Goodreads goal, I have a hell of a lot of reviews to write and a ton of ideas for blog posts, so expect to hear from me soon! I’ll be back on a more regular posting schedule and I can’t wait to see what you all have been up to.

I have a request for you:

I’d absolutely love it if you left links to your favorite blog posts that you’ve written over the past couple of months in the comments or send them to me on Twitter at @inloveandwords so I can check them out. I’m dying to see what you’ve been reading and what you’ve been up to!

Aside from reading ALL THE BOOKS, here’s what I’ve been up to:

My best friend had his Black, White, and Sparkles Christmas/Birthday party and a good friend of mine got married!

I love getting all glammed up for Joe’s Christmas/Birthday parties, and this year for the sparkle theme, I went all out with the sparkles and gems:

Continue reading “Just A Little Update :)”

Raising Little Readers: How I Instill a Love of Reading in my Kids

It’s 12:30pm on a Saturday and my youngest daughter, Violet (3yo) is napping with her dad in my room.

Vsleeping

I’ve been sitting and reading a book for about 20 minutes when I notice that my oldest daughter, Roree (5yo) has been extremely quiet for most of those moments.

Feeling like an awful mother, I decide to see what she’s up to, fully expecting that she has fallen asleep herself in the middle of the playroom floor, which wouldn’t be the first time.

Instead, I find her lounging on her bed with a book in her lap and two piles of books on either side of her.

My heart absolutely soars.

Roree

Continue reading “Raising Little Readers: How I Instill a Love of Reading in my Kids”