Life has been kinda crazy lately. I’ve had so much going on. So many positive things happen for me. I will give some of them to you today, but I also want to make things clear. I still fight for every day of my life. Does this mean I have to fight at the same level to do some of the most basic tasks? No way! Thank God I have moved on from that part of my life. But I do still have to think smartly throughout my day and work with the pain in every way I can. I luckily have had a few milestones, but I am still working on some of my health. Here is the layout of my life over the past couple of months:
When I was looking for a job, I was stressing about my capabilities. How would I manage the stamina required? How will I hide the health side of me? I wanted to get a job and have a new life without my health history. But this pain I have/do experience doesn’t just go away and it doesn’t really NEED to. As long as I let it work alongside me, I will be able to perform the best I can. I then got the job with the National Trafficking Sheltered Alliance. A job that was more of a blessing than I thought it would be. I have a team and bosses that not only acknowledge my pain, but they check in with me. They care that I am working with the pain and working on myself as well as the job. “You can’t do this job to the best of your ability, if you aren’t at your best. And we need you at your best!” This was mentioned when I apologized for having an appointment. Yep- I apologized for working on myself. Oh the lovely effects of people from my past.
If you know anything about me, you know I am incredibly close with my sister Olivia. Well, she is at college. What college you may ask? VCU. Why would this ring a bell? Can anyone guess?!? Exactly invisible person! VCU is where I had my complex medical trauma. You can imagine what this did to me and my PTSD. Basically, I was experiencing all the flashbacks and panicked feeling that I used to feel. I started seeing my old shrink at KKI (yes I said shrink, this is how I cope). We started doing the work.
Quick refresher: I always went to the same place that was handling the open wounds under my arms. It was exit 74C going south on 95. You are probably wondering- geez Alexis how do you still remember the exit after all these years? Well, that is what trauma does for you. It is so deeply engrained into my brain so much so that I remember the minute I saw the exit was the minute I knew pain was most likely coming. And not just pain like how you get scared for the dentist. I mean pain like cauterizing wounds in your armpits. **pat on my back for being able to write that** This whole area was permanently placed in my brain as the danger zone. Right down from where my best friend was going to college.
So, my shrink told me that I needed to override those memories. Basically, go to the place of hell and create memories that are funny/happy. The first thing I was told to do was go to the exit and take pictures. So that’s what I f***ing did.
74C no longer has power over me. The rest of the day was a bit of a wash. I enjoyed spending time with my sister on campus, and then we went to the hospital gift shop and got both my OT and shrink a toy. I did that because after appointments, my mom would always take me to the gift shop to get snacks, drinks, and some type of stuffed animal or something. Anything to make something good after a painful visit. It was just another thing to conquer and I love getting people gifts. lol
I’ve also been going to Occupational Therapy to improve my hand posture and strength. This is one of the more difficult things I’ve ever done- mentally and physically. You see, when I began being in pain, I started to try to protect my arms and hands. I kept my upper limbs very close to me. Because of this, my muscles have learned to quickly retract any time they are open. Ideally, just doing this when something painful is happening is fine. But I started to do most things in my life with my hands clawed. I kind of picture the issue like this:
Typical experience: When you were little, your mom always told you to watch the hot stove. One day, you may have reached and touched the stove. Hence, your brain learned not to touch the stove. Now, with you grown up, anytime you get near the heat of the stove, you might jump back worrying that you got too close. That’s what keeps you safe.
The Alexis experience: When I was 17, I had the second surgery on my armpits. I quickly learned that I could feel the muscle move from my fingertips to my armpit. For quite a while, that was incredibly painful. THEN on top of it, I hated seeing my fingers tremor and swell. If I kept them closed, I couldn’t see the tremor or the puffiness. Just like the hot stove my brain quickly learned these were dangers. So now, I jump back with closing my hand any time my brain feels as if there is a danger. Now, my muscles contract without me thinking about it.
As you can see I’m at another point in my life of having to work past the pain and my brain. Just like I did with lifting my arms and just like I did with learning to rewrite and eat with utensils. I have an appointment every week and I thank God it is with my ot who has helped me: Nicole. It’s a very revealing thing to work through and I even see it as embarrassing. I may get frustrated in appointments and maybe even upset. It’s nice to work with someone I trust and also someone who has seen the worst of me. But these feelings are all pain, panic, fear, and embarrassment coming out. Ask my mother: all of those feelings come out in anger for me lol. I am still working on this to this day. And let me tell you, it’s freakin hard.
What is my life like alongside all of this? Well like I said above, I work for an anti-trafficking organization- (if you need a new organization to donate to, consider them. Click here). I’ve never seen a more honest organization that is only trying to do good. Along with working, I go to the gym every day, am a part-time graduate student, trying to have a social life, and figuring out how to live life after I missed a period of 5 years of it. As you can assume, I have a breakdown every once in a while.
This life is hard. I have to work alongside my pain every single day. I can’t let my health go or things can go down quickly. But finding the balance can be difficult. I want to make sure I am excelling (and catching up) on every aspect of life. But I recently tried to put my health on the back-burner and just focus on life like everyone else. My life started to become so much harder. I stopped eating as much, I stopped the gym, I even noticed myself losing my sleep schedule. Then I wondered why my pain was increasing. My body quickly reminded me that I can’t pretend like I don’t experience the pain. In my eyes, it reminded me I can’t be like everyone else. I know, not an ideal thought. My freakin shrink would have something to say about that (hopefully Dr. Effie does’t actively read all these posts….lol). But I promise you all this is worth it.
Now you read everything going on with me. Yes, a shit ton. But I started off with this post to make everyone aware that my fight isn’t over. I don’t want to present as if this disease is easy. People with chronic pain/illness rarely have a fight that is finished. I fight smartly. I know I do. I was lucky enough to learn how. CRPS requires strategy. That is what I’m attempting to spread awareness about. How do I spread awareness you may ask?
- Tik Tok
- Potentially a new project that is OFFICIALLY in the works 😉
I will not rest until that teenager just diagnosed with CRPS can type in “complex regional pain syndrome” on every platform and find the positivity I’m sharing. There is a rainbow on the other side of the fire. You don’t need to put the fire out, you just need to put on a special kind of suit and walk through it.
Curious of some of my platform?
Just you wait, you’ll see more of it. ❤