When you have a rare pain condition, you tend to get passed on between medical professionals. If they can’t fix you or have an exact treatment plan, they assume you are the “broken” one. Not that they just lack knowledge. Since I’ve had CRPS for so long, I have been passed around quite a bit. I’ve had several different neurologists, PT’s, OT’s, therapists, pain medicine and rehab, pain, infectious disease, etc. As someone who was growing up as this pain journey was unfolding, it is hard not to turn everything onto you. I mean I was just a kid. I began assuming that my case was too weird or I was too “crazy” because this many doctors shouldn’t be confused with my case. Think of a time when you couldn’t get help for something (school, sport, family, friends). Would you do the same and assume something is wrong with you? It’s all us, right? There’s absolutely NO way a superior wouldn’t have answers. Bullshit.
As I said earlier, I have had a long history of doctors. Every time one would get too confused they’d call someone else in. It got to the point to where my insurance couldn’t believe the reason why I have such a long list. I know- Ignorance. But they wouldn’t take that as an answer. I know I know, doctors can’t know allll about everything. But you know what they do need to know? Validation. Freakin validation. I need to know that no matter what, I can trust that they will take care of me. I need to feel like a human and not a puzzle in Example A of a textbook. As my world started to crumble and my body started to turn against me, I began having a ton of symptoms. Every single symptom would scare me beyond belief. And let me tell you, CRPS is the king (I don’t know why it’s a boy) of weird symptoms. Remember when you were little and your mom or dad always told you to tell them what hurts or what doesn’t feel good? We are taught that as long as we share what’s going on, a doctor can help. So in the early stages of being diagnosed, I was sharing every new symptom that would pop up. First it was pain. Then it was tremors. Rashes, swelling, stuttering, clawing of my hands, difficulty with coordination, headaches, muscle spasms, sweating, chills, burning, stabbing, tingling, blanking out, hands falling asleep, fatigue. The list goes on and on. All of the symptoms started happening so fast and it was scaring the shit out of me. I honestly believed I was going to be paralyzed. Any time I would tell my neurologist, she would say it’s nothing and not to talk about it. She taught my family that too. Although I can see what she was getting at, it was a major miss on the way she did it. Because that’s what started the self doubt and the feeling like everyone around me was giving up on me.
From then on I would suffer with a constantly changing body in silence. I wouldn’t blame my family because that’s what they were taught. But this was the most damaging thing for the doctors to engrave into me. I couldn’t speak on the painful swelling that had me up at 3am. I couldn’t speak on the shocks of pain that went so deep into my bones. I couldn’t speak. Which should have been the thing I could always do. Due to this damage, I began leaving symptoms and issues out of the conversation at appointments. For years I never mentioned trouble eating, getting dressed, showering. To me, it was embarrassing. Clearly if a doctor once told me not to speak on it, it isn’t important. So- that made me believe that I was crazy for having such odd symptoms. Which was so far from the truth. As time went on and I left more and more out of those initial consultations at medical centers, doctors would base their treatment plan off of what I told them. Ultimately I was getting a mild treatment plan for a very severe pain condition that effected every aspect of my life. I was too scared to open up because I was so sick of being shot down. Eventually the doctor or therapist would discharge me. Now was that my fault? I don’t think so. Am I responsible for the mindset I was forced into? I don’t know who I would blame for this- but that’s such a waste of time. The past happened, now I hope to help others learn from it.
More and more doctors were discharging me. For the longest time, I never understood why. “But I still can’t……….” I never once said the things I still couldn’t do out loud because any time I have done it, I quite literally was told not to discuss it. I was afraid of that happening, so in the “Alexis way of coping” I avoided it. I avoided sharing the things that caused my life to be so difficult because it was embarrassing and the doctors would only judge me more and help me less. I thank God every day for the team that didn’t give up on me. Let me tell you how it went different.
When I started with the Specialized Transition Program (STP) at Kennedy Krieger in Baltimore, I was doing it virtually. This was at the very heat of the pandemic and that was what they were offering at the time. Now this wasn’t much easier than in person because it was all day, 5 days a week of multiple therapies. I was constantly doing something. The only difference was that they could only see what I let them see. I took advantage of that. From having chronic pain for so long, I have to admit, I am really good at putting on a face. That’s great and all except for at appointments when that helps no one. But when the appointment is online, I was able to quickly lean off camera or do things out of sight that the doctors couldn’t see. All the meanwhile I was still only telling them some of the symptoms and some of what was affected. I mean I could tell that they were good at their job and that they were pushing me harder than I’ve ever been pushed. This team was the best of the best put together for me thanks to the pain clinic at KKI due to my age and my case. But there was something still off. I realized after 4 weeks that they started discussing discharge. “I think you’re doing really well”. “You can continue this on your own at home”. “You can start doing more again”. But I didn’t believe a single one of their statements. It killed me because I built such a connection with them and yet there was something off. I finally got the news of official discharge. My stomach dropped. I didn’t want to seem like someone who loved the attention (again, self doubt from doctors in the past)- but I just knew I still needed help. I am going to share something with you that I wouldn’t normally do. It still makes my heart race rereading this because I was in such a horrible place, but I want you to understand when I finally broke and what I did.
Something absolutely incredible happened. I received a call from the person I sent this to and she actually thanked me for sharing this with her. Not an ounce of her acted like I was crazy, or obsessive, or too difficult of a case for her or the team. I put trust in someone and she actually followed through. Thank God for doing the virtual STP because that gave me time to learn to trust her enough that I laid it all out there. This email was sent in October and by January I was heading to Baltimore. They didn’t give up. No matter what I threw at them and all the walls I put up, they didn’t give up on me.
When I was 3 weeks into the in person program, I knew that I only had 1 week left. Of course, they had the option of extending- but I assumed that wouldn’t happen. Doctors always turn away from me-remember. Not until the conversation I had with my pain psychologist. I can still play it in my head like a movie. That specific day I was very upset. I knew the program would end soon and I could feel myself getting so tired and in so much pain that I was starting to shut down. In other words, I could tell I was giving up. Typically, in treatments I hit a wall- a point when I am done working and talking because it is all getting too painful. My avoidance meter goes on and my fear stops me and tells me to turn around. I told this to my doctor (hey Dr. Effie!) and she explained that she understood why I would feel this way. I told her that I could feel myself quitting but I didn’t want it to happen again. I pleaded for the help to keep going. I was crying, overall frustrated, and scared shitless- yes quite the scene. Dr. Effie did something that no one else has ever said to me. She simply said, “why do you want to keep fighting”. I responded with a quick remark just trying to get her to shut up. She had me create an image of Alexis in 5 years. What I was wearing, what I was doing, where I was living, the whole thing. It completely opened my eyes. She said “when you feel like quitting or like you are going to put the walls up and be done, picture her”. By the way, I am officially crying as I’m writing this because it was that big of a moment. THAT was the second time it was proven that my team wasn’t going to give up on me. THAT is what saved my life.
Now, why did I tell you this story? Was it so that I can talk even more about KKI? No, not entirely. I mean I feel like everyone should know about them, but that isn’t the reasoning. Here is my point. If you have something going on in your life and no matter how many times you share it, people keep negating your thoughts or ignoring you- I hear you. I was right where you are. It’s so painful. It takes so much strength to stand up again once you’ve been beat down. But think about what could happen if that one person decides to listen. I’m lucky enough that I finally had someone who did and I feel like I will always keep in contact with her. My entire life. The 5 years of pain and darkness cleared the minute I was listened to. I felt like I could breathe again. I wasn’t keeping this in. I wasn’t hiding a secrete that didn’t need to be a secret in the first place. But you know what? I spent years of being turned down and sent to new people. Years of feeling embarrassed because I wasn’t a classic case of having a disability. “I wasn’t disabled enough, but I also wasn’t abled enough”. So I will tell you here today: stop trying to figure out what box you fit in. Not a single freakin person on this planet fits in any of the boxes WE design. Reach out to those that are meant to help us. And you know what? Fight. for. yourself. At the end of the day, you are going to be the one to get shit done for you. Have enough and fight for your life. Because I promise you-one day- someone will jump into the ring and fight right by your side.