I have this whole motto where my blog is about kicking chronic illness's ass. Usually I think I am pretty good at it. But recently, I have been getting my ass kicked. I hate admitting that because that's not who I am. I am not someone who spends a long weekend unproductively on the couch. I am not someone who lets physical defeat get me down mentally. But you know what, I am realizing that maybe that has to be a part of who I am now. I exhaust so much mental energy being upset that I am "not productive" or "I'm shitty because I didn't make it to the gym". I am so damn hard on myself. But it is against my nature not to be.
I also get frustrated REALLY easily when things are not in my control or I can't solve a problem. A blessing and a curse I supposed. Recently, a lot has been out of my control. My symptoms have escalated and I am having more bad days than good. The thing is, it isn't my gastro effects of Crohn's that are crippling me from living a normal life. It is the fatigue, joint aches, muscle pain and all of this is just getting worse. I am so thankful that my Remicade has definitely helped my gastrointestinal issues but I can't help but wondering, what else is going on? There has to be something else. There is no physically possible way that a 26 year old should feel this way.
I have went through the motions, gotten blood work done, MRIs, CT scans, sonograms. Somehow I am a perfect specimen of a human on paper now. But my body is telling me otherwise. I thought, maybe I just need to go to the gym more and be more active and my joint pain will go away. Wrong. I made it 30 minutes into a gentle yoga class before my wrists were swollen my knees were aching and my one knee actually gave out when walking down the stairs when I got home. THIS IS RIDICULOUS. Coming from someone who used to frequent 90 minute intense hot yoga classes, frequented other classes at my local gym, and have a serious collection of Piyo programs that I loved to do at home, this was a wake up call. Even during periods of time where I wasn't working out as frequently I could drop in for a HIIT class and hold my own, and now I can't even make it through a damn gentle flow yoga class?!
I scoured through my blood work to see if there were any signs of something that maybe my doctor was missing when she told me everything was "fine". I also in a fit of range sent her a probably not so nice message explaining that "fine" is not what I would use to describe my situation right now. I am not blind to the fact that with one autoimmune often comes others. Many doctors have speculated there is something else that is going on behind the scenes but they have never been able to pinpoint it. I have a recommendation to go see a Rheumatologist which I supposed I should but somehow I feel like its just another dead end. I have been frantically researching my symptoms (I'm long past being concerned about when WebMD says I'm on the brink of death), and have found some theories that I will share as I go through this journey of, hopefully, diagnosing what else is going on. I am not only going to see the recommended Rheumatologist but also a specific Lyme literate doctor as well so I can make sure I am covering all bases.
I have some theories of my own which I don't want to share until I am sure, but let this serve as another example of why taking control of your own health and doing your own research is so crucial. You have to be your own advocate.
I will make sure to keep you guys along on this journey with me and as always I appreciate anything that you guys have to say as far as questions or comments. If you have been in this similar situations and have stories of your diagnosis I would LOVE to hear those stories and pieces of advice as well.
I do also have to close this post out with addressing the mental impact that this whole thing can have. It can literally make you feel crazy because on paper you seem fine but you aren't! People start to act like it is all in your head. But it isn't. I know that, other Spoonies know that, and what has helped me so much in staying sane through this is leaning on the online support community and hearing about other people's similar situations. Us chronic illness fighters have to stick together and support each other, which comes back to the reason why I started Crohnically Blonde in the first place.
Blonde babe. Maryland native. Crohn's crushing puppy mother to two sweet rescues.