Chronic Illness Chronicles

Hey guys, it’s been awhile it’s time for an update. So things have been kind of hard..really hard. My stomach pain has gotten so bad most nights I’m curling up in a ball and it’s getting harder to get myself to eat because of the pain. I went from an only soft foods diet to soft foods but mostly liquids. My dietitian, who I feel like is the only one (medical team wise) that is helping me right now, told me that she thinks it is time for a feeding tube. This was HARD for me to hear. A feeding tube.. that’s scary and man have my intrusive thoughts been loving this one. I know that it is preventative so that I don’t get to a point where it’s hard to treat because of the severity. I know it will be temporary, I know that this doesn’t mean I have failed..but it feels like it. I feel so completely alone with this, and again I know I’m not, but that’s how I feel right now. 

Needing a feeding tube has been something I have been worried about since I was told I have gastroparesis because a lot of people who have gastroparesis end up with one at one point. So now I blame myself for thinking it into existence, and I know I had no control, but it’s hard not to think that way when the GI doctors have failed you, that’s right THEY failed me, I did not fail myself(this is me trying to convince myself). It’s hard when you have had stomach problems for pretty much your entire life and have never been told the cause, even now we don’t know the cause. My dietitian has a few ideas but I’m trying really trying to think it isn’t that because that involves major surgery.  It’s hard when you have to think about celebrating your 25th birthday without your favorite food or cake and ice cream. It’s hard when you have to think about all the times your friends are gonna want to go out or if my significant other and I want to go out to eat. It’s hard knowing I have to think about more than just the “normal” stressors a 20 something will have like: will I find a job?When will I buy a house?Do I even like my job?What is my purpose?, etc. I have those as well as: will I be able to continue to work?Will I be able to live on my own?Will my illness progress?Will I be able to do all the things I want to?,etc. Those are what is really getting to me right now. As well as, I really have to have a tube sticking out of my nose all the time now? And all the fears that come with that. 

What I am trying to remind myself is that when I was first being diagnosed with POTS and they didn’t know what was wrong yet and I had doctors tell me “we just have to get comfortable with not knowing what is wrong with you”, that I thought that was the end of it all, that I wouldnt have that great of a future, that I’d be too sick forever. But I got through it. I fought and yeah there were days I didn’t take all my meds, or drink enough water, but I fought and did what I could to get to where I am now with my POTS, which is a lot more manageable than even just a few months ago. I’m trying to remind myself that since all of my diagnosis I have done a lot so I’m gonna name some: traveled to California, traveled to Greece for 2 weeks (two DREAM trips), got a new job..then another new job, was a bridesmaid in my brothers wedding, got into grad school..left that program..and started a new grad school program, bought a new car all by myself, found myself again, bought my puppy, road tripped down to FL to see my grandparents(there was a time I didnt think Id ever drive again), traveled to see my bestie in DC for my birthday, got some new tattoos, made some AMAZING friends,started EMDR therapy to finally work through my PTSD(which is a HUGE accomplishment for me), and more. 

I try to be positive, I do. But it isn’t easy. It’s not easy when your body is not working, it’s not easy when you have so much other shit life is throwing at you, it’s just not easy. It’s not easy fighting through depression. But life isn’t easy and that’s just the hard truth, life isnt easy but it’s beautiful. 

Here’s what I do know: I have an amazing support system-including my dietitian and 2 therapists, I have some pretty great inspirations-like my mom who is battling cancer for the second time and not letting it knock her down, my nana who is the reason my mom knows how to fight so hard (and always win). I have amazing friends and a great support system at work(people who care?!) My boss even has liquid IV put aside for me just in case I forget my electrolytes or have an episode at work. I have my faith and my intuition. I have my dogs who always know when I need them. I have a whole softball team of girls who are huge supporters of mine. I have my drive and determination to have the best life, to be stronger than this, to fight, because I have to. I have a lot of things going for me and that is something I am forever grateful for. 

So at the end of the day this is a scary time in my health journey, there are a lot of unknowns, and a lot of thoughts and emotions running through my mind. But that’s okay. It’s okay to feel and be scared. I mean I’m only human. I know that I am strong. I know that I do have support even if this makes me feel so isolated from the people in my life. I know that Ill still look good with a tube hehe. But most importantly, I know that I will be okay and that I will get through this.