Trigger Warning: There will be discussion of anxiety and PTSD related to surgical aftercare. Please take care of yourself first.
This is a blog that I have to write over the course of several days. I am making sure I am ok and that my mental health can remain normal while I tell this story. If you know me, you probably know a lot about my story. I’ve done articles, spoke at events, and am now writing a blog. This specific story and series of events are unknown by most people. This is what I have kept private because for the last 4 years I haven’t even been able to talk about the events. I feel it is critical for me to share now because I am positive other people have gone through this. I need to open up so that those know they are not alone. There is no way for a human that has a chronic pain condition to not have some effect on their mental health. If you are anything like me, then you may think you don’t have any mental struggles. You chalk struggles up to it being how you handle the pain. That is so wrong. You do not have to live in constant stress and despair. However, I want to say that this blog does not need to be used as a diagnostic tool for others. This is just my story that I am willing to share. Please be considerate while reading…….you are now about to see a snapshot inside of my brain:
I have always had anxiety. It was never a huge issue. I feel like everyone in the world has had anxiety at one period of time or another (if you’ve never felt it please tell me what is in the water you’ve been drinking). It spiked during the time period when my father left. Then, once I hit high school, I was, overall, doing really well . Of course I had stress and anxiety, but it wasn’t a consistent feeling. If you have read my story, then you know that I had my first surgery at the end of my sophomore year of high school. I was 16. If you haven’t read it, please click here. It is important you know the timeline.
The surgery on both of my armpits was one that the surgeon had done countless of times. He was making an incision along the whole armpit in order to take out the cyst of one arm and clean the other one out in order to force it to close. I was beyond stressed going into this surgery, as anyone would expect. Remember- I was a kid getting both of my armpits cut open. I was scared shitless. But I went to the hospital and put up a big front. I can say years later that I went in like a badass. Now, the thing about getting surgery on your armpits is that the skin cannot be stitched/stapled together. It has to heal on its own from the inside out. That was the first issue. I had a pretty big opening that had to heal over the course of weeks. If you are getting the ‘hibbie jibies’ reading that, I will warn you and say it only gets worse. The surgeon could not just send me home with a totally open gash under my arms, so he did a pretty normal thing. He packed it. *I would like to take a moment and say I am proud of myself for being able to write this out. I can feel my blood pressure going up, but I am ok*
Packing is a way that surgeons can almost ‘plug’ a wound until it begins to heal. Basically you take cotton/gauze of some sort and stuff it inside of the wound (which goes down my body in inches). I know-sounds like hell. Still this isn’t the worst of it. I went home that same day and was completely out of it. I was on Oxy and coming off of the anesthesia. Honestly I commend my family cause I’m sure I was fun….NOT. Anyways, after that night I was taking Oxy on the clock for pain (because I’m sure you know, the armpits are very sensitive). Halfway through the day my mom told me that we had to take the gauze out of my armpits. She explained that the surgeon said it would come out easily if I could get it wet in the shower. As uncomfortable as it sounded, I took Oxy, and went into the bathtub. My mom came in and told me to lift my arms up. This is when hell struck. My mom pulled out about 6 inches of cotton/gauze out of my armpits. It pulled out like a string coming out of those motorized toys. The pain was unbearable. All I remember my mom saying was “you can scream if you need to honey. Just scream. It’ll go fast.”…..
My life until then had been pretty good. A few bumps with my family- but nothing could compare to this. I was experiencing the worst feeling/pain in my life. I don’t even want you to imagine what that was like for me because I don’t want you to get a glimpse of the hell. For you to understand- I want to tell you this. I am now sitting here crying. My heart is racing and I keep having to go on my phone to calm myself down. This is my story. This is the part I’ve kept from the community for so long. This is the behind the curtain that was only known by me and my family. I don’t think I can put into words how traumatic this was. This was also the moment that my brain snapped. It placed this memory and anything that reminds me of it as a danger zone. Of course, 16 year old me didn’t know that yet.
As time went on, my mom and I had to continue placing gauze with bandages over both of my armpits. Every time I changed it, we would have to pull the gauze out again-experiencing trauma AGAIN. Once I hit junior year, I was fixing bandaids and gauze with open wounds while I was performing for my high school theater group. When we went to a theater competition called VTA- I would wake up earlier than the rest of the girls in order to change the bandaging again. Every time I had to look or change it, I would get reminded of that day. When I had surgery #2, I explained that I would not want packing. But the damage of the trauma had already been done. The packing wasn’t as bad, but there was already such trauma around my armpits and hospitals. I was under so much stress and panic. Still, I just tried to remain as ‘normal’ as possible- whatever the hell that means.
Throughout time I realized I was avoiding a larger range of things and more things caused me serious distress. First it was wound care materials: gauze, bandages, purple protection stuff, cleaning solutions, cauterizing, etc. Then throughout time I realized I was having horrible nightmares every night about that day. Showers would make me incredibly nervous and feel like I was back in that exact moment (never even considered baths). I couldn’t pass cotton balls anymore in a store. Then I couldn’t even say any words that relate to wound care or what happened to me. Then the certain scent of shampoo I used on that day I could no longer use. Every little thing that my brain linked to that day was off limits and caused horrific panic attacks and distress. Time went on and I never really talked about what I was going through because I couldn’t explain the why. I just assumed I was being dramatic and hung up on something people don’t get bothered by every day. That wasn’t until I told this exact same thing to my team at Kennedy Krieger in 2020. This was the first time I heard: ‘You have Post Traumatic Stress Disorder” PTSD? Oh hell no.
Post Traumatic stress disorder was correlated in my mind with veterans and sexual assault victims. To me, it was when someone goes through the worst of the worst. Horrific flashbacks and many other symptoms preventing someone from functioning. Yes that is true-in some cases. In others, this disorder can pop up in anyone who has gone through a traumatic experience that caused them to need their fight or flight response over and over again. Well, not only did I have a traumatic experience- I also was going through pain that felt like my own body was torturing me. My body was/is stuck in that fight or flight response. I’m on guard 24/7. If you’ve hung out with me, you have probably noticed that I space out or get quiet all the sudden. That’s because my brain was checking for dangers. The nightmares, the difficulty with baths, the fear of cotton anything or wound care, and so many more was truly PTSD.
Ever since I was diagnosed, I’ve been working on putting the trauma to rest. I went with my pain psychiatrist and OT I was close with to target to battle my instincts and actually buy cotton balls. But the important thing is that I did it. I began realizing that I really did have PTSD and I was experiencing flashbacks. That was incredible trauma to someone so young. I still to this day struggle with certain things (like sleeping peacefully in my room). I am sharing the anxiety and ptsd diagnoses for a reason:
As I mentioned earlier, we all experience anxiety, but we have a difficulty with experiencing any mental diagnosis. That is because of the horrible stigma. I named this blog “anyone but me” because I will accept someone else’s mental diagnosis, but I never see me in their shoes. I was the exact same way (and I’m still there occasionally). That’s why it is so important to me to share this story and personal thing about me. If you are reading this and are struggling with chronic pain (specifically CRPS), then please listen. You are fighting for your life every day. You wake up, do the things necessary for survival, and go to sleep. You have this weight of pain on you everywhere you go. THAT is not a mental disorder. That is simply another physical illness. But, it would be hard to not develop anxiety, depression, PTSD, mood disorders and so many other illnesses when you are dealing with it on the daily. Every day we are going to war with ourselves and our body. Acknowledge that strength you have.
Overall I am trying to explain that it is okay to admit you need help with coping. There are so many options for us out there but one that isn’t an option is holding it in. Take it from me, eventually it will come out. So, be the one in control and tell your story. We are some of the strongest humans in the world. But every human needs help at some point. I can say that once I shared my trauma and what I go/have gone through, I actually could start working on it. Look at me now, one year later I am able to write about the experience. Holy shit. I’m not going to lie, it will be one of the hardest things you’ve ever done. We like to avoid our demons. But wouldn’t it be nice to fight them off? I mean we fight everything else all day, why not this. I am always here to talk if you need someone. I will start the conversation off first:
Hi. I’m Alexis. I’ve had CRPS for 5 years. I’ve fought everything- some of which is PTSD and anxiety. I’m stronger than ever and I will get through this. Oh the stories I will tell on the other side of this fight, hopefully making a difference.
You aren’t weird or crazy. You are human ❤️
Crisis Text Line: 741741