Her Journey, My Struggle

It's A Dumb Circle of Life

My parents and I left for Philadelphia on Feb 3, early in the morning by car, like at 4 o clock. My follow up appointment was for the 4th but not long after we arrived to our hotel, I passed out and hit my head and was out for like a minute I've heard on the bathroom tile, and somehow dislocated my hip in the process. I pass out a lot and dislocate a lot but I've never really hit my head on something that hard, so we just manage it at home.

I ended up in the back of an ambulance to the hospital I had to go to in the morning anyway. My blood pressure was the lowest that my family had seen (we take it at home a lot), 73/45. They started an IV of fluids while in the ambulance, and stabilized my popped out hip

When I got to the hospital, they immediately started assessing me neurologically, and took blood. They wanted to mildly sedate me to pop my hip back in place but didn't right away and instead took me for imaging. I had a dislocated hip for like 30 minutes while they waited for the CT to come back to make sure my brain was okay.

Then, they consciously sedated me apparently and popped it back in, put a brace on me, and pushed some pain meds. I was kinda out of it for like 30 minutes, no big deal.

Not long after that, the blood work came back, another IV was started and I had to get infusions because of levels being low. They also were working on getting me a bed upstairs to admit me. 

I didn't have a concussion, and by then . my vitals were mostly normal, or as normal as they could be in my situation. The doctor working the ER, well my section of the ER, notified my team of doctors and my case worker about what happened.

I got to the hospital at about 5:45 that evening and didn't get up to a room until 1 am sometime. I slept a lot in the ER which was surprising because it was so loud, but for the past month, it seems like sleeping is all I do. 

My team of doctors had all came in by 11 the next morning. At 2 o clock, I was getting a feeding tube placed through my nose into my intestines

That was the one thing I never wanted. I knew that it meant that I was bad. I knew that it was coming though. After all, my weight this morning was 20 lbs lower than it had been when I was discharged. I knew it was going to happen because of how poorly I've been. 

I silently cried when they placed it. They thought I was uncomfortable, which I was but because I felt weak, I felt defeated. I don't know my sister even dealt with any of this. I'm not strong like her. I'm just pathetic and I hate myself. I hate that she went through this because she didn't deserve it and even though I can barely handle it now, I'd still throw myself in her place if I could, instead of her.

I'm gaining weight though which is good because a lot of people initally have issues with finding out what formula and what rate to do, but now I'm at the rate they wanted me to be. 

They still want me to eat. I have been, and I have been put on a new medicine which helps, I don't throw up now, but I'm basically stomaching jello and soup and like liquid oatmeal at this point and it still hurt like a motherfucker, but they're messing around with doses, but if I don't eat, then I'll lose function of my stomach entirely which they're trying to avoid.

They hope that they can figure something out and in a week to 2 weeks, I should be going home with the tube just to supplement what I already eat, and not be entirely dependent. Then, they want to see me back around spring break or so for a planned admission to see where we go from there if all is good and I can stomach more actual food and rely on that more than the tube, and hopefully remove it.

They did determine that I did indeed have the hypermobile type of EDS. 

I don't know what life has for me, but I just want everything to go back to normal. I was prepping college auditions. I was working on my college classes. Yes, I was sick, but I didn't have a tube up my nose and I wasn't sitting in a hospital bed.

I'm lucky that my work for my college classes are online so I can still do them, so I don't get behind. My intern teacher understands and isn't counting any points off, and I have tracks for my choir pieces, but I've had to contact two colleges to reschedule my audition. At this point, I'd let my mom get me a dress to throw on and do my hair and makeup, go down to the lobby, have my dad play my audition pieces for me and I sing in the lobby with a tube in my nose and an IV pole next to me, cause they have a piano in the lobby, film it and send it to the colleges. Even though that sounds completely psycho. I just want to have a plan for next year, but I feel like this is just putting everything on hold. I'm restless.

I'm lucky though. I'm not on suicide watch and I'm not on bed rest, so I can get out of my room. I can walk, and I'm gaining weight so really, I'm blessed.

My parents, well I know they feel like they're living a horror story again. My mom had to step out of the room when I was getting my tube placed and all I could hear outside were sobs. I knew what was happening. She's been praying a lot. Yes, we're religious, but I've never seen her begging God to fix this mess. When we were in the ER, my mom wouldn't stop asking the doctors if my kidney function was okay. She usually asks at least once a day.

My dad seems okay. I'm still afraid that he's going to lose his job because he's been out for about a week and I said it was fine if he needed to take a flight back home. He says the school understands and if they don't, well then, he'll get a job elsewhere. He took me aside and told me that even if he knew I was absolutely fine, he can't leave my mom alone in case something does happen. He feels like if he left, he'd lose both of us.

Life is moving fast and hitting my with things I never thought. I'm tired, but I'm not going to let life pass me by because I promised my sister, and I still do that I'm living for her, because she can't. But is this living? I guess so, because she breathed so much life into every little single thing she did, I guess I can do that too. Or at least die trying.