Hello šš¾ and Happy 2022! Itās been quite the interesting start to the new year, which I knew wouldnāt 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 hasnāt done anything thus far, Cleveland Clinic hasnāt followed through on essentially any of the things they were supposed to be taking care of and no one locally does the basic things. Iāve literally had to ask for orders to get my chest port flushed every four weeks so it doesnāt clot, along with routine blood work since Iām on Remicade.
I feel this thing happening where I am burnt out and just donāt have it in me to keep fighting for someone to care about me and my basic healthcare needs. Itās terrible, because essentially, if I give up, my remaining lifetime will be significantly shortened and what little health I have will fizzle. š©š¤¦š¾āāļø Itās an absolutely awful place to be in and stay in. Iāve literally been going around this endless cycle of no one wanting to do anything for me for 15 years now, and Iām over it.
From GI doctors to OBGYN to cardiology to Primary to Specialist, it seems that everyone is content with saying āidkā and doing nothing. So I have now just adapted the attitude of āit is what it is and itās gonna be what itās gonna beā because I simply just cannot keep worrying and stressing the fact that I do not actively have anyone āmanagingā 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. Iām doing a lot of research on my different diagnoses and symptoms and Iām in a number of different groups that I try to ask others for advice on. Everything is ultimately trial and error, but Iām doing infinitely more than any doctors are doing. Which, the way Iām looking at it is that if I donāt try to do something, absolutely no one else will. Itās 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. Itās 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 didnāt have to begin with. You see, to be successful in anything, you have to have support. Thatās something Iāve not had from anyone, ever. I had birthday parties after birthday parties that people wouldnāt even attend, even with nice venues and limos. I donāt 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 ālikeā or āshareā 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 donāt realize how important it is to give people their love and support and roses while theyāre still here and can witness it. You donāt know what people have been through or are going through behind the scenes. You donāt know what it took for some people to finally get that acknowledgment.
I think thatās the hardest part about all of this is that I want to see everyone win. I wanna support everyone thatās trying to come up and build a business because I know what itās like and no one supported or helps me. I would never intentionally do people the way they do meā¦and I think thatās what makes everything so much worse. Now Iām having to dial back my support because it isnāt being reciprocated and people are bothered about it. š¤·š½āāļø Iām bothered too, but Iāve absolutely got to look out for and take care of me first now.
Iām now doing dog and house sitting to make a little bit of money to pay my bills, but itās definitely nowhere near enough. As long as Perry (my 2010 Mazda 3) stays in good shape, Iāll be fine. I just need to pay off my cards š³ 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, weāre not okay.
šš¾š