The Summer Everything Changed

If you follow my social media or you know me personally, you probably know some of my story as to how I got CRPS. However, there wasn’t a time that I have talked about all the shit that happened that caused the disease. That is what I will be doing here. As I explained in the last blog, I do not intend this to be solely focussing on the disease and my life with it. That would just be depressing as all hell to both write and read. However, I do feel like it is important to know what happened to me and what got me here.

So, here is my story of how I got the most painful disease known to man

Spring/Summer 2015

At the beginning of my sophomore year of high school, I made the decision to give up soccer-an activity I had been doing since I was 4- in order to chase a new dream: theater. I had found my niche and got a significant role in the spring play: Into the Woods. In other words, I was on top of the world. So confident in myself and the people I was around. A group I could call my second home. I want you to take a look at the picture below and see if you notice anything:

After the last show with a cast-mate and mentor. Alexis is on the right.

Now, I don’t know about you but I’m seeing an incredibly happy kid who is sweaty and exhausted from running multiple 2 hour shows in a weekend. This was actually one of the highlights of my life. However, this is what I want you to notice. I am in a very hefty costume for this show. I had a full costume change and as the show went on, I would add another layer of clothing. You can’t see in this photo, but I was wearing gloves by the end of the show. If you aren’t aware the stage lights for theater are incredibly hot on top of it all. I am sure you are wondering why I am telling you all of this. Whelp, unfortunately, it was during this show that I found out I had Hidradenitis Suppurativa. I know. Hidra what!??!?! I won’t get into detail, but this is a condition where cysts (hard ass lumps under the skin) develop in places on the body. Mine just happened to occur under my armpits. After my last show, I went home and went to shave my right armpit. And this is exactly the moment where shit hits the fan. There was a strange open wound under that armpit. It hurt…..BAD and wouldn’t heal. Long story short, I needed surgery. I decided to get it done by the chief of surgery at Children’s Hospital of VCU in Richmond, VA. Prior to the surgery, I had another cyst show up under my left arm. The surgeon decided to take that one out as well. WHAT. A. MISTAKE.

The surgery that I got under both of my armpits was one of the worst things I have been through. The aftercare was so rough that I still suffer from PTSD to this day (however it is getting better). The left wound healed-but the right refused to close. That freakin wound stayed open through my entire junior year of high school. The burning, painful, horrific, nasty wound tortured me for a whole year. All the meanwhile, I continued going to school and doing theater. I refused to let it stop me and prevent me from doing what I love. Boy was I wrong.

Fall/Winter 2016

This was my senior year of high school. Your senior year is supposed to be one of the best and most exciting years. And I will agree, it started out that way for me. I was excited to go to my final year of the Virginia Theater Competition, I was looking at colleges, auditioning for colleges and conservatories, and just overall planning out my future. Keep in mind that the whole past year I spent telling the surgeon that the wound was staying open. He did absolutely nothing. My mom and I decided to go back and explain that the wound needs to close so I can enjoy life even more. HA! I was in for a treat. He sent me to a new surgeon at Children’s VCU so that I could have a second opinion. That surgeon took one look and explained that I must have another surgery. I was hesitant. I was a kid. I was frustrated. I was scared. But I went through with it. Pain and all I stayed strong and kept a smile on my face. Less than a month after the surgery and I began having some different sensations and symptoms I have never had before…..

And Here is When My Fight Truly Began

The symptoms all came about so quickly that my mind nor body could keep up. The first thing I noticed was that I was incredibly weak. I felt like my arms and hands couldn’t hold up even a feather. I also began having a tremor. First, it made things frustrating-but I’ve dealt with plenty of shit worse than that in my life. Then it became difficult to do some things that required precision of the hands. But then it ended up completely effecting everything I did during my day: getting ready, writing in school, getting dressed, showering, etc. I just could not get the tremors to stop! But the most critical and terrifying symptom was pain. I know-pain is subjective. We all go through pain. Get that out of your head. This type of pain is one that couldn’t even be handled by the strongest of person. It was a combination of burning, stabbing, cramping, deep pain that causes so much trauma that you have trouble mentally functioning. It is even raising my heart rate writing this. It began right around my armpits and then it spread, quickly. It ended up from my shoulders, down to my fingertips. It felt like my body was giving up on me. Like I was dying. But that’s the thing, this pain, this disease doesn’t kill you. It simply tortures you. I had so many tests done to confirm that I didn’t have cancer, or lupus, or anything that exists. That is when my neurologist at Children’s VCU sat me down and told me I had Complex Regional Pain Syndrome. She explained that it was already spreading so fast-we needed to act immediately. I think despite everything, this was when I made the decision that I would fight. No matter what- I would win. I didn’t care how bad it got, I WOULD WIN. That determination helped me survive the next 4 years.

*please understand that everyone’s journey and symptoms are different. CRPS is incredibly hard to diagnose and often not believed as a true “condition” to very arrogant doctors. But ask any one of us-it is most definitely real.

2 thoughts on “The Summer Everything Changed

  1. Alexis, I knew back when you were a preschooler that you were strong. What I’ve read here just confirms it. I know pain, all types of pain, but what you describe sounds excruciating! I can only imagine what you’ve been through and I can imagine what Cathy must have been feeling through all this. Kudos to you!!! I pray that someday soon scientists will find a cure! A big hug to you!

    Like

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