"I know, I know the sirens sound Just before the walls come down Pain's a well-intentioned weatherman Predicting God as best he can But God, I wanna feel again
Rain or shine, I don't feel a thing Just some information upon my skin I miss the subtle aches when the weather changed The barometric pressure we always blamed All I want is to flip the switch Before something breaks that cannot be fixed" - Sleeping at Last
This blog will go up on Friday, but it is currently Saturday May 7, 2022 as I am writing this. If I'm being honest, the last few months have been a roller coaster. As many of you know, I have been battling trying to find answers and get into Mayo Clinic. Well last week I was finally accepted.
There's a lot of emotions right now. I feel like between my syncope episodes, starting Humira, starting nursing school, battling doctors to get to Mayo, and just living life, I have not had time to just sit and feel my emotions.
I have not had time to appreciate the fact my Crohns is in remission. I have not had time to celebrate the fact I graduated college. I have not had time to just sit and take it all in, until tonight.
Today I spent time with my boyfriend, studied with friends, and came home to just rest. I started journaling and decided to write this blog about midway through my journal entry and turned on a sad playlist to allow myself a minute, or a few minutes to just be in my feelings and take a moment to feel the impact of the past few months and how much I have just tried to push to the side and ignore.
When I found out my Crohns was in remission, I was pissed. I thought for sure my Crohns Disease was the answer as to what is going on. I thought Mayo wouldn't need to be an option. Everyone was so excited for me, but all I could focus on was the fact that I was still having all these symptoms. I still struggle with that fact. Yes, I am able to be happy that my Crohns is in remission now, but there is still a big part of me that just cannot comprehend how I'm in remission but still feel so sick.
Before nursing school started, I was home for a GI appointment when I got really dizzy and fainted. Ever since then I have had random dizzy/fainting spells which scare me. They scare me because I cannot always tell when it is going to happen. The cardiologist says it is not POTS, put me on a 2 week halter monitor and I go back next week for an echocardiogram. I want answers.
People on my instagram this week have been leaving comments thanking me for being real and vulnerable while sharing my Mayo Clinic journey. I filmed the journey, the tears, the rants, the calls, etc. I did this because I caught myself putting on a facade. I was putting a mask on that everything has been good and I've been great, when the truth is, I'm not. I'm done only posting about the things I accomplish with chronic illness. I got caught up only posting the "highlights" of my life with chronic illness even though there were so many moments where life was not a highlight. From here on out, I'm keeping it real. I'm keeping it vulnerable. If we aren't there will never be change. There will never be understanding.
Yes, I still have amazing days and good times, but I'm also currently in a moment in life where all I want is my old life back. I miss the things I used to be able to do. I wish not having to juggle appointments with class. I miss having energy. I miss the days where a doctors appointment didn't mean a new diagnosis. I miss the days where I wasn't fighting my own body. The truth is, chronic illness really sucks. There's not a way to explain what I, or we, go through physically or mentally to people without it. Mentally and physically I'm just exhausted and this has become a full time job again that I did not want and I cannot quit. I tell myself my body doesn't hate me. I try to be positive. I try to be happy. But right now, mentally, these illnesses and this journey are too much.