The body is a funny thing. It is supposed to defend and protect you, keeping the enemies out and alerting you to danger by showing signs of distress when you’re sick. The body is supposed to be your warrior and your number one solider. For some of us, however, our bodies feel like the enemy.
Living with an illness that trains your body to work against you is the worst kind of betrayal. It is not a coincidence that treatments for idiopathic and rheumatoid arthritis are very similar to treatment that cancer patients also receive. Both of these illnesses work essentially the same; they fight off the good when they should be fighting the bad. This can lead us to second guess everything our body is telling us.
I was diagnosed with juvenile arthritis at 18 months old. Ever since then I have been on almost every biologic and steroid that has been approved for my illness. I typically play off how my illness affects me. I have never been shy but I also hate being pitied and I have found the initial reaction when talking about my frequent hospital stays and medical treatments is that people instantly feel sorry for me. At this point I am expected to stay strong and put on a brave face but the truth is I am terrified of what the future may hold.
The month of January has been pretty rough in regards to my illness. I am going through one of the worst flares I have had in a long time. I manage my arthritis relatively well but I had to skip an infusion in December and I was definitely feeling the consequences of doing so. I receive infusions every four weeks at Cincinnati Children’s Hospital and luckily they were able to fit me pretty quickly because of my flare.
Everything was going as planned, until it wasn’t. About an hour into my infusion my chest started to hurt – it felt like someone was just squeezing my heart. I stretched a little bit, moved around in the bed and all of a sudden it was hard to breathe. My nurse for the day was in the room with me so I let her know how I was feeling and all of the sudden the pain and panic fully set in. My nurse unhooked my IV and ran to get Benadryl. I couldn’t stop throwing up, my blood pressure was 190/90, I couldn’t breathe and it felt like someone was sitting on my chest. All of a sudden it felt like the whole hospital was in my room, one nurse holding my hair, a doctor looking at the rash that had spread all the way down to the bottom and to my fingertips, another nurse asking me if I wanted her to call my husband to which I shook my head “no.”
During all of this I was injected with pain medicine, steroids and epi (three times to be exact). After an hour or two my symptoms started to go away and I was transported to ICU where I had to stay overnight. The nurse did end up calling my husband, who called my mom, who called my brother and they were all there when I was brought into the ICU. I don’t mind being alone in the hospital, I actually prefer it. I go to my infusions alone, I typically go to my doctor appointments alone too. My husband kept asking me if I wanted him to stay overnight with me but I told him to go home to our two dogs, and he needed to go to work in the morning.
Once he left, I just laid there and tears started to fall. What did I do to deserve this? Haven’t I sacrificed enough being in pain every single day? What medicine are we going to try now? Why is my body always trying to work against me?
Your body is supposed to be your warrior. It is supposed to defend and go to battle for you. Unfortunately, my body is fighting against me and it can’t be trusted.
We want to hear your story. Become a Mighty contributor here.
Getty Image by KatarzynaBialasiewicz
Chelsea Gilchrist is 26 years old with a career in Property Management in Cincinnati, OH. Chelsea was diagnosed with Juvenile Arthritis at just 18 months old and it has impacted almost every joint in her body. When Chelsea was 16 she was then diagnosed with Fibromyalgia. She spent years not talking about her illness and has more recently decided to be more open and spread awareness. You can find Chelsea at pretty much any Cincinnati Bearcats sporting event.
chelsea-gilchrist