For the past week I have been feeling totally not myself. Chalk it up to pre-Remicade, post-Remicade, or just plain not feeling so great! I have been really internalizing a lot of how I have been feeling when I realized how totally counterproductive that is. I have an entire support system around me AND an entire support system of CB readers/ an online community. The reason I even started this blog in the first place was to connect with others and share my story!
who else gets super down when they aren't feeling great?
To me that seems like such a ridiculous questions. Like of course if I don't feel good physically, emotionally I don't either. But, I have to say I know some super strong ladies who I have seen power through sickness with a smile consistently plastered on their faces. I always wonder if they are faking it or they just are in on a secret that I am not. If it is the latter, please do tell.
This past week was my 6th week between my second and third Remicade loading doses and I felt like complete shit. I was tired and rundown which made me feel like I couldn't be 100% at work and at home and maybe I needed a little more sleep than usual. All are totally normal things to experience but I get so frustrated when I can't be on my A game.
I thought Remicade would make me feel a bit better but instead I feel so much worse after this most recent dose. Like WHAT! I'm back on steroids for the next eight weeks and going back on a variation of the low FODMAP diet and eliminating dairy all together on top of gluten. I have also been exploring the Keto diet which is supposed to be great for decreasing inflammation (additional details on that to come). This Remicade infusion also left me feeling a whole lot worse than usual. I've had a fever, cold sweats, tingling in my limbs, brain fog, body aches, and I've been SO incredibly tired. I definitely didn't feel this bad the first couple of times so I am super confused at why this time has taken such a turn for the worse.
Luckily, I was able to relax this weekend with a whole lot of sleep. As much as I enjoy a well rested weekend situation, I hate feeling like I wasted the days. This will forever be a struggle for me, switching the mindset that I need sleep. Sleep is not a waste of time.
I got to spend some quality time with my mom and other members of my family today which was much needed. It was honestly a struggle to pull myself out of bed but I was happy I did (despite almost passing out in Target, yikes!). I shared with my mom how much I have been struggling with not feeling like myself. Physically I feel like I can't control what my body does. I feel like I gain and lose weight with no warning either way. My clothes don't fit right. The steroids I'm on change even how my face looks. My brain fog is out of control and I cannot, for the life of me, remedy it. I feel like I can't give myself fully to any part of my life because I only have so much energy to give. As someone who loves controlling a situation, this is not my cup of tea. I know you are supposed to try and be kind to yourself but it is hard when you are so unbelievably frustrated with things you can't control.
I'm writing this now, snuggled up on my sofa, binge watching Nashville, with my two pups by my side. I finally am feeling a little better for the first time in over a week. Even though I didn't come to a resolution for my problem, just saying it out loud makes me feel a little better. Writing it here makes me feel a little better. Like I said before, isn't this the reason WHY I started this blog in the first place?! I refuse to be one of those people on social media who unauthentically portray themselves as having their shit together all the time. Because, truth be told, things can be a real mess. But it is nothing to be ashamed of and the bloggers and influencers who are the most honest are the ones who are my favorite. So share your mess with me. Lets help each other along this wild journey that is living life with a chronic illness.
Head over to the Crohnically Blonde Facebook page and give it a like! If we can get enough people rallying around each other I'd love to start a secret Facebook group where we can all share our lives with each other. Sort of like what The Lady Gang and The Skinny Confidential have done. Let me know your thoughts. If you think it would be cool or not? All that jazz.
Thanks for your support, as always.
Blonde babe. Maryland native. Crohn's crushing puppy mother to two sweet rescues.