No One Likes a Sick Person

Dealing with my recent health issues has been such a struggle. I have been being treated for lupus for the past 3 years, but now new things have developed.

Over the summer, I started experiencing some dizzy spells, and forgetful moments. I also noticed a tremor start to develop in my left hand. These things started to progress and finally I had to go in and get an MRI done.

I’ve done all these tests before and usually, you expect the tests to come back normal, saying they found no issues.

This time, though, that wasn’t the case.

I got a call from my primary doctor on September 28 telling me that they found something on my MRI. For those of you who don’t know, September 28 was the exact day, last year, that my mom got the call saying she was diagnosed with cancer. She then died less than a month later.

So, when I got that call, on that day, it was too much. I dropped the phone, and fell to the floor. I cried so hard my eyes were almost swollen shut.

I couldn’t believe what I had just heard. They found something on my MRI? What does that mean?????

My doctor explained to me that what they found was an issue on my pituitary and with my T1 Signal. Granted, I have no idea what that means yet, but basically there’s something wrong with my brain. And that’s terrifying.

However, there was a part of me that honestly felt relief. I knew there was something wrong. There were too many things going on with my body. I knew there was something seriously wrong, but you can’t explain it, and you can’t prove it. And, quite frankly, it’s been horrible and scary.

When most of your results keep coming back negative, people start to question your sickness. They question if you are making all of this up, or worse, if you’re simply just lying about it. And since the doctors can’t even find anything wrong, you start to question your own sanity. You really do. You start to think maybe this is in my head and that feeling was completely terrifying.

So, I started documenting everything. And I mean everything. I have dozens of journals with notes about each day that I’ve had some type of flare up. I have videos of myself to capture my bruises, rashes, bleeding spots, bald spots, blue fingertips and toes, and the list goes on. Well, before I knew it, I had so much documentation that I finally had to accept that this was absolutely not in my head and I needed some Goddamn help.

So, I got the MRI done, and then got the news. That there is, in fact, something wrong with me.

After I picked myself up off the floor from crying, I sat in a moment of complete and total peace.

………………………………………

I smiled and I said my prayers.

There is something wrong. How incredible is that?!

Before you react to that previous sentence, hear me out…..

I have been told for the past 3 years that there is nothing wrong with me. 3 years you guys. And most of you have seen me for the past few years….there obviously was absolutely something wrong!

So yes, even though that news initially scared me, once it settled, I felt so incredibly happy. I felt relief. I felt like now we have some answers. We don’t have all the answers, but now, we are headed to one of the best places in the world to help find at least some more answers than I have now.

Also, they never said the word tumor yet. Granted, they did have looks of concern on their faces when I was being shown the scans, but they DID NOT say tumor. So that is a win, for now. And I’ll take it.

I have done quite a bit of my own research on both of these indicators that showed up on my scans. This is not backed up by doctors or anything, this is my own research, but my own research has prepared me for all the health things I’ve experienced, so I’m trusting it this time, too. So, the pituitary thing, to me, looks like it could be the very beginning stages of a tumor or another indicator of significant autoimmune issues, which makes sense. The T1 Signal thing is a common indicator for multiple sclerosis (MS), which also makes sense.

Almost all of my symptoms match up with both of these indicators. The pituitary helps regulate the body’s temperature and one major issue I have is my body temp is out of control. I have intense hot flashes and then immediately will be freezing, shivering cold. It doesn’t matter if it’s winter or summer, these episodes happen all the time. Or how I get really high fevers, out of the blue. The MS symptoms match mine PERFECTLY. Like almost textbook; blurred vision, hand tremors, fatigue, dizziness, vertigo, muscle spasms, numbness, loss of feeling in limbs, feeling like I’m choking when I’m eating, body twitches, etc. I mean, I could not believe it.

These brain scans revealed the reason for what was going on with me. Thank you, Jesus!

It may sound weird that I am sounding so excited, but you guys, to finally get an real answer after YEARS of nothing, it truly brought me tremendous peace. I just feel so relieved. Now, we know where to at least start looking for the real problem, and find the way to fix it. And, I am extremely confident in Mayo. I have researched the shit out of that place and I am so incredibly excited to go there and get healed.

Of course this has been a scary time. I will never lie about that or hide it. You know how much I believe in transparency and being real about what’s going on. I believe that sharing our stories helps other people feel less lonely. I think that when we talk about the shitty parts of life, too, it just makes us all more human. I have never been a good liar and quite frankly I simply don’t have the energy to lie and pretend that I’m not having health issues, when I really am. This is extremely real for me. And it’s real for other people too. Also, I hope that sharing my story helps people who don’t have any of these invisible health issues understand a little bit more about what it’s really like. How some days people like me can be totally, completely normal, and then some days you finally need to get an MRI done.

So yes, this has been scary. Scary as hell. It was scary getting that call on the same day my mom got her call. It was sad to tell my family. It was horrible to think about the worst case scenarios that could happen, especially as I was snuggling my little boy to sleep. Of course all those things go through your mind. They just do. I know that no one wants to talk about that or hear about it, but it’s reality. And for me, it’s how I grieve.

I took my time to grieve all this. I felt all the feelings and got them all out. I wrote down all my fears and then burned it. Then, I fell to my knees and threw it up to God. I know, I know, that may sound cliche and blah blah, but it’s so effing true it’s not even funny. I had to completely lean into Him because, my God, it’s been a fucking year for our family. And quite frankly, I physically couldn’t take anymore.

I couldn’t handle anymore fear. I couldn’t handle anymore sadness. I couldn’t handle anymore unknown. I couldn’t handle what if I die. I could not handle it anymore. So I didn’t. And I thank God for that, literally.

So now, I am just going day by day, and I can tell you with 100% honesty, that I really do “stop and smell the roses” every damn chance I get. I always stop and look at the sunsets and my son loves them just as much as me. I dance in the kitchen with Theodore as he rolls his eyes at his silly mama. I really do appreciate my good days, but in a tremendous way, and it has been the coolest feeling ever.

The other night, driving home, the sunset was so beautiful it made me cry. Even Theodore said that sunset needed to be a picture. So, we pulled over, took the picture and just sat for a lot longer than I ever would’ve sat before and just enjoyed that moment.

This might sound weird, but going through a moment where you think you could possibly die really does something to you. I mean, it really just wakes you the fuck up. I almost hate to say this, but I kinda wish everyone could experience something like this in your life. It forces you to see life differently.

Of course, something like this could force you to be horribly sad and cry about it, but honest to God, what is the fucking point of that? Because, either way, this is happening. There is an issue with my brain. Crying about it now isn’t going to make that not true. Yes, that is blunt, but it is the truth.

I had to go through the same mental process when my mom died. I had to face myself in the mirror and verbally say out loud that my mom was dead, over and over. I had to. I had to make it real. Because once you accept something is real, you can begin to move forward.

Now that I know this is all real, my health issues and body problems, I am so fricken ready to move forward. I am ready for Mayo in January (we have a date set) and I am so ready for my next chapter in life.

So, although everyone may not like a sick person, I damn sure know that everyone loves a comeback story.

And I’m writing mine right now, bitches. Stay tuned!

Happy Trails,

Em