The Diagnosis - Part 9

August 30, 2024

Yikes! Part nine? I didn’t think I’d go into this many parts… but here I am!!!

Sidenote: Sorry for the lack of pics for this post. Not much to show. Maybe I'll find stuff as I wait till this goes out and add some stupid MS memes or something!!

Oooh! Here….

But, I figured I may as well tell ya the story of my MS diagnosis. Even though I hide most of it, dealing with this disease has been the hardest thing I’ve ever had to deal with in my life.

And really it started way before we lost the house with the garage shop. It actually started in that house, not long after we moved in.

I’ve lived my entire life very actively. Being in landscaping almost my entire adult life at that point, most of that time was spent on the job site, building patios and retaining walls and planting trees and moving rock. It wasn’t easy work. I worked on the job site until 5 weeks before Joe arrived. I was determined to keep going but I just got to where I couldn’t handle it anymore. I wasn’t supposed to lift a certain amount but I know that most of my pregnancy I was lifting way more than I should. I was in good shape. I always had been. I worked manual labor and I ran and biked and hiked. That was normal me. I’d work 9-10 hours on the job site doing hard manual labor and then I’d go home and run with my dogs. Usually 2 miles. Sometimes 4. Nothing major. But still. I’d go out and easily bike 20 plus miles in the evenings. My best was 47 miles and I always had a goal of doing a century. I was just always very active. Just after Joe turned one I decided to hop on the treadmill. It was time to get going again! I barely made it 1/4 mile that day. Which was super odd for me. I could go a year without running and then just jump on and breeze through a mile or two. And just roll.

So tried again. Same. Again.

Same.

Again.

Something was wrong.

Over time I started suffering from massive migraines which weren’t odd for me. I’ve dealt with them off and on my entire life. But this stage was bad. I had debilitating migraines about 3 times a week. Sometimes more. And then I started having issues with my head. I had this strange numbness in my temple. I would have days where I had to just go lay down. I started having major joint pain. I started having issues with food. I started having dizzy spells. My leg had gone numb for a while. I would have these weird icy hot sensations. Vision issues. I started feeling like a hypochondriac. What else was there?

My legs were tired. I couldn’t run anymore. I struggled with daily activities. I was tired. I was scared. This wasn’t me.

But at that time we didn’t have medical insurance. And no way to get anything affordable. That’s a whole other story. So I couldn’t really do anything. I just suffered through the migraines and just kept working through what it was. My anxiety went through the roof, my fear grew, I didn’t know what was wrong. This wasn’t me.

By the time we’d moved back to my tiny house I was not doing well. But no one really saw it. Except Nick. Kinda. I hid it well but there were times I would stop by home during work while I was out checking job sites and just lay down on the floor and rest. I couldn’t go. I had to lay down. This wasn’t me at all. I felt guilty, confused, sad, scared…. Guilty. This wasn’t me. And I don’t feel like anyone saw how much this wasn’t me.

When Nick started his new job shortly after we moved back to the tiny house, we sat down to discuss the insurance situation. There were three options… cheap, mid range, and the oh shit package.

I pushed “We need the oh shit package.”

He didn’t think so, but I pushed. I knew.

The moment our insurance was instated in August/September, I started down the path of finding out what was wrong. First Dr said I was just depressed. Here’s some antidepressants. Which I hated!!!!! When I went to see one of my other doctors whom I very much trusted, she referred me to someone who she felt could help me.

I got super lucky!! Most people with MS spend years finding their diagnosis. After spending an hour with her intern, she came in and said “you have a history of migraines.…. I’m sending you to get an mri of your head. We need to start there and get a baseline". And that's where it all started to unravel.

After my mri showed indication of MS, she sent me to a neurologist, who then ordered another MRI and a spinal tap. That was fun!!! Seeing a massive needle with blood dripping from it after it was pulled from my spine wasn’t the coolest experience in my life!!! But it was all good! I made it good. Plus, I reacted to the second MRI when they injected the contrast. I remember feeling weird when it started moving through my veins. About 10 minutes in, I started feeling itchy and my tongue felt weird. I knew what was going on. I pushed the button and she pulled me out. I told her and pulled my shirt up but she couldn't see hives yet so she asked if i could handle 10 more minutes. If you have ever had an MRI, you know you can't move. Imagine hives developing across your chest as your tongue swelled all the while having to be perfectly still. This was a 100% mind over matter kind of situation. But I did it!!! I was dizzy and increasingly itchy after coming out. The hives started to swell on my chest and began to work its way outward. I was able to take an otc allergy med after the Dr on staff came to see me. The health professional who had ordered the first MRI and broke to me the indication of MS, was actually a physicians assistant and not a doctor. She’s an amazing PA and I totally see her as my Dr… but she wasn’t. She isn't. But that’s ok!!! When the Dr on staff at the imaging center asked me who my Dr was I said, “well she’s not, but her name is…..” and he smiled really big and said “she is my PA.” And like a light bulb went off…. I laughed “Oh so you are my Doctor!!!! Nice to meet you!!” He let me take my medication and they held me for 2 hours just to make sure I was ok to drive.

That spinal puncture though! I know y’all wanna hear more about this!!! Knowing what I was going in for and what to expect afterwards was super scary. My only defense was to be jovial and upbeat and just try to laugh and make everyone else laugh along with me. It was all I had to fight the fear. When they asked me my name and why I was there before they did the procedure (would that be a procedure?), I guess to make sure I wasn’t a couple match sticks short of a box or to verify that I was cognizant and stable enough to know. I don’t know. But I answered my name and birth date … when he asked why I was there…. I responded with “do you want my answer? Or the one you want to hear?” With a confused look on his face, he said “your words.” I smiled and said, “welp, your about to stab me in the spine and steal my spinal fluid!”

It lightened the mood. And I really think everyone kinda relaxed. We did joke throughout the “procedure” and I was fully awake and aware for the whole thing. I had to lay there as still as I could while my fluid sloooowly dripped into a cup. It was clear. For some reason I always saw it as a translucent yellow. No idea why!! It was all done through an X-ray so they could see where the needle was going. As horrid as that sounds I got to see it. Also, biggest needle ever. But it wasn’t that bad. Really. It wasn’t. Wish they coulda given it back to me though. Thieves!

A lot of Dr visits, 2 MRI’s, blood work, spinal puncture, blah blah blah blah….

All this happened between August and November, 2018.

I was diagnosed November 26 that year.

But it didn’t end there.

-AJ