Yup, we're going there today. Major truth bombs right here so if you aren't in the mood to get deep then you should keep on scrolling and come back when your are feeling like getting really freaking real.
Recently I have been feeling like I got hit by a bus. Regina George style, over and over again both physically and mentally. I have been really struggling to balance everything going on in my life. I know that sounds like I am being over dramatic because I am dealing with normal 25 year old stuff like a mortgage, friendships, money, work. But as someone who is prone to some serious anxiety and is a major control freak, the unexpected things in life are oh so rough for me. A hospital visit here, a random and unfortunately steep medical bill there, a random day where on top of a bad day at work I am plagued with body aches all day. I'm not here to complain. I'm here to put all of this out there because if you are suffering from a chronic illness chances are you feel this way too. And if you are a supporter of someone with a chronic illness then now you know how we feel everyday.
I usually can keep pretty even keel but when shit hits the fan for me I lash out at those closest to me (aka Matt) and I get just plain evil. I try so hard to be a a kick ass #girlboss at work putting in 50+ hours of time in per week, coming home and being a good girlfriend and dog mom, keeping my house clean, having a side hustle (shoutout to this blog), and trying to maintain a somewhat normal state of health (doctors appointments, sleep, food prep, research). I feel like I just can't win at all of these things 100%. I know it is because I always hold myself to unbelievable standards but I REALLY, like REAAAALLLY need to stop doing that.
I think a big portion of feeling so defeated is that the light at the end of the tunnel can sometimes seem so far away. On good days or weeks I feel upbeat and hopeful and then on bad days I feel like remission is just this imaginary thing that doctor's tell me about to keep me satisfied and trying more and more medicines until hopefully I find the magic combination. I feel bad whenever I think like that because I know people have it A LOT worse than I do. But like I said, this stuff needs to be talked about because honestly, I haven't seen anyone really put it out there like this.
The other day I reached a real breaking point for me that I haven't experienced since my first diagnosis. Things just piled on and all of a sudden everything went wrong at once. Our AC broke in our new house, work things were getting crazy, and on top of the my health took a weird turn. I got very sick two Fridays ago and ended up in the ER. I didn't know what was wrong but I did know it was way worse than usual so I needed to figure out why there was a sudden change. After hours of excruciating pain, dizziness, dehydration, and lots of pain medicine, blood work, and tests the conclusion was so irritating to me.
My lymph nodes in my intestines were swollen.
Are you kidding?
That is what caused me to feel like my insides were literally going to fall out?!
I went from the doctor telling me that I may have to have emergency surgery to telling me that my freaking lymph nodes were swollen?! My prescribed regime for when I returned home was more steroids, pain meds, and Pepto.
I'm in no way frustrated with the doctors. They did everything in their power to figure out what was wrong and they did. And it isn't there fault that there is nothing more helpful that can be done. Autoimmune diseases are a painful game of guess and check where sometimes things work and sometimes they don't.
I have been in this type of experience before but this situation was so defeating because:
1, I had been very strictly following my anti inflammatory diet and actually feeling better until the night before my ER trip. Things with Crohn's can change so suddenly. One minute things are okay and one minute they aren't. There is no planning with Crohn's.
2. I actually feel crazy whenever the doctor tells me its "just" this or "just" that, that is the problem. Like am I crazy for feeling the sickness, pain, and discomfort that I am? When I am feeling THAT bad I would expect them to find something gravely wrong with me. Instead it is "just" my lymph nodes causing all of this and my regular Crohn's flare up inflammation that can't be tamed. There is no measure on pain. They can only take my word for it. When they do tests and blood work and see it is "only" my inflammation, I feel like my pain isn't justified. Because of this I so often hide how I am feeling physically because its not like a broken leg where you can see something is wrong. That is why it is called an invisible illness with a serious limit of metrics to validate your condition.
I talked through this a lot with my mom who as a fellow Crohn's sufferer and totally gets it. I also worked through it with Matt who is a freaking angel for putting up with me. I slept for almost the whole weekend when I got home from the hospital and then was still foggy through the beginning of the week. Come the weekend I made the mistake of over committing socially (which was so incredibly fun) but now I am paying for it.
I am realizing my limits and I hate having limits. I know now that I can have only one weekend event and that is enough. I know that I need a sleepy Sunday to recoup for the week ahead. I know that as much as I love my friends, my health needs to take priority.
Right now I am still waiting for my Remicade to hopefully start working better. I get my next injection next Friday. For now I am coping with stomach/intestinal pain, foggy brain, and body aches. I switched up my diet again to see what happens and I am on a cocktail of a few medications all with different side effects that cause another issue in my body.
I didn't write this post to be super depressing or to have people feel bad for me. I have a great, beautiful, amazing life. I am not as sick as I could be. I have a job that understands that I need to take time for my health and even more importantly I have a support system that is always there for me and lifting me up. I have a house, I have money to pay my medical bills, and I have the access to great healthcare. I am writing this to shed light on the fact that when you look at me, I seem like a happy, successful, ambitious 25 year old girl. Most people who I meet will never know how I feel everyday because I don't share that with them. I worry about the judgement from other people for me not being able to be 100% at everything in my life. Mostly because they can't see that I am struggling so what must they think? That I am lazy? That I just don't care? That I am a slacker? That can't be any further from the truth. I am all about hustle but I am also struggling. Just recently I realized the true mind fuck that invisible illnesses are and I think that the term is thrown around so much but never actually, explicitly explained.
I hope you read this and can say "wow, yup I've been there, I feel you girl" or you pass it on to someone who hasn't been in mine (or your) shoes and they realize the struggle is most definitely real even though it can't be seen.
I always get so nervous before publishing posts like these because they aren't perfectly curated. Talking about this stuff isn't sexy or cool for Instagram but I keep coming back to my purpose. My purpose of this blog and they purpose of my going through my journey with Crohn's. If at least one person reads my story and can related or connect or feel validated in their journey and struggle then I did my job and served my purpose.
Blonde babe. Maryland native. Crohn's crushing puppy mother to two sweet rescues.