The Daily Struggles of Invisible Chronic Illnesses

Hello 👋🏾 and Happy 2022! It’s been quite the interesting start to the new year, which I knew wouldn’t disappoint as the last 3 years have proven. As far as my journey is concerned, things have been par for the course. My health issues have been a constant struggle and infuriating reminder of how awful my healthcare situation is. I have switched to yet another primary doctor, who hasn’t done anything thus far, Cleveland Clinic hasn’t followed through on essentially any of the things they were supposed to be taking care of and no one locally does the basic things. I’ve literally had to ask for orders to get my chest port flushed every four weeks so it doesn’t clot, along with routine blood work since I’m on Remicade.

I feel this thing happening where I am burnt out and just don’t have it in me to keep fighting for someone to care about me and my basic healthcare needs. It’s terrible, because essentially, if I give up, my remaining lifetime will be significantly shortened and what little health I have will fizzle. 😩🤦🏾‍♀️ It’s an absolutely awful place to be in and stay in. I’ve literally been going around this endless cycle of no one wanting to do anything for me for 15 years now, and I’m over it.

From GI doctors to OBGYN to cardiology to Primary to Specialist, it seems that everyone is content with saying “idk” and doing nothing. So I have now just adapted the attitude of “it is what it is and it’s gonna be what it’s gonna be” because I simply just cannot keep worrying and stressing the fact that I do not actively have anyone “managing” me or my symptoms.

I have slowly been trying to get my body back into a routine of some light workouts and trying different holistic treatments. I’m doing a lot of research on my different diagnoses and symptoms and I’m in a number of different groups that I try to ask others for advice on. Everything is ultimately trial and error, but I’m doing infinitely more than any doctors are doing. Which, the way I’m looking at it is that if I don’t try to do something, absolutely no one else will. It’s sad, but blatantly true.

When I was a senior in high school, I was a size 4, worried about why people were so horrible at my school and whether or not I was going to graduate ( I did). I never imagined that 15 years later I would be struggling to survive and get basic medical care, let alone having to decide if I was going to completely give up in life or continuously fight for myself. It’s a life that I absolutely would never put on my worst enemy. No one deserve to suffer constantly and be denied basic necessities and blocked in every avenue they try to make for themselves.

I cannot tell you how many things I have tried to do (legally) just to pay my fucking bills and have some quality of life, and every single one was an absolute waste of time and energy that I didn’t have to begin with. You see, to be successful in anything, you have to have support. That’s something I’ve not had from anyone, ever. I had birthday parties after birthday parties that people wouldn’t even attend, even with nice venues and limos. I don’t know wtf I was thinking by becoming an entrepreneur, but nonetheless, here I am. If I could work a normal 9-5, I absolutely would because it definitely gets old seeing other people easily succeed at things no one will even give a “like” or “share” for me on.

Even when I was first doing modeling and had some KILLER pictures, people would hardly hit the like button. Same with acting. I see people giving some of my costars tons of love and support and I can only sit back and and dream of that kind of love and support for myself one day. People don’t realize how important it is to give people their love and support and roses while they’re still here and can witness it. You don’t know what people have been through or are going through behind the scenes. You don’t know what it took for some people to finally get that acknowledgment.

I think that’s the hardest part about all of this is that I want to see everyone win. I wanna support everyone that’s trying to come up and build a business because I know what it’s like and no one supported or helps me. I would never intentionally do people the way they do me…and I think that’s what makes everything so much worse. Now I’m having to dial back my support because it isn’t being reciprocated and people are bothered about it. 🤷🏽‍♀️ I’m bothered too, but I’ve absolutely got to look out for and take care of me first now.

I’m now doing dog and house sitting to make a little bit of money to pay my bills, but it’s definitely nowhere near enough. As long as Perry (my 2010 Mazda 3) stays in good shape, I’ll be fine. I just need to pay off my cards 💳 so I can die peacefully without leaving my mom any of my bs.

If you know anyone that is struggling with Crohns, Endometriosis, Dysautonomia, POTS, or Ehler Danlos Syndrome, check on them, we’re not okay.

🙏🏾💗

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