We live in a world where suffering is sadly a thing. We all have of moments of suffering emotional or physical suffering. Acceptance that you will one day suffer makes it easier to deal with once the time comes. I always asked myself if weI didn’t experience times of suffering would I know what true happiness feels like? Would I appreciate those great times with the same amount of gratitude if I had not experienced hard times.
All these thoughts and much more came into my mind during my latest stay at the hospital. For those who don’t know the story let start from the beginning. Starting the beginning of December I started having another flair up. The same flair ups I have been getting since 2012 or 2015. Flair ups that cause intense muscle pain in whatever muscle I use. The pain is indescribable even the little things like texting on my phone hurts.
My last big flair was in July which went away on it’s on own which sometimes they do. I had a few mini flair ups that all happen during the full moon but those lasted a day or two. Which is why when this particular one occurred I thought to myself this will past. However that wasn’t the case.
Fast forward to New Year’s Day I was supposed to go to yoga which sometimes makes me feel better but I ended up going over to my dads house for dinner. I wasn’t feeling pretty shitty but nothing I couldn’t handle. Once I came home that night I remember my playing singing bowl thinking to myself 2023 is of to a rough start, then I don’t know if I passed out or just fell asleep for about a hour. I woke up took my medicine and went to bed.
The next morning I felt awful so I called my mom to take me to the hospital although I felt slightly better by the time she got to my apartment we still went to the hospital.
She initially took me to Lehigh valley which was a mess cause they know don’t how to treat Propionic Academia. Although they did get on the right fluids they didn’t have my special formula that I take every day or a blender to make it. I spent two night at Lehigh valley and I was getting worse by the minute. I remember at some point my friend Joe who also works there came to visit and I could hardly talk even tho I understood everything he was saying.
My last night at Lehigh Valley was a complete disaster. I was supposed to get transferred at night so my mom and my brother went down to Penn awhile but do due lack of communication I wasn’t transferred till that morning. During the night I somehow managed to piss on my nurse and ripped out not only mine but also the guy’s next to me hart monitor. Needless to say I scared the shit out of people.
Initially it was supposed to take eight days for me to get transferred to the University of Penn but fortunately my metabolic doctor was able to pull some strings and get me in much sooner.
The morning I finally made down to Penn I sort of remember the medicine doctor talking to my family and I. I believe he said he could get me back to 90 percent but luckily I think I’m at a 100 percent. Another interesting note is my thumbs were stuck in the root chakra mudra, The doctor asked if I knew I was doing it which I didn’t.
That night I didn’t sleep one wink. I had a mixture of really bad anxiety which I never get and some really amazing meditation experience’s. It was a long night for sure. In the morning I was able to have my first real meal. As much as I wanted it, I could barely chew or swollen.
Later that day the doctors had me stand up but instantly collapsed. I say collapsed cause unlike my other passing out episodes this time was different. It felt like having a stroke even tho I didn’t. The doctors came in and I can’t completely remember what they did. All I remember was being present enough to breath into my heart.
After a night of fluids I was slowly gaining my movement and my ability to speak back although no where near 100 percent. I met with neurology that afternoon and wanted me to stand up. This time I took two steps and collapsed again. The same feeling as before. I remember talking with neurology right after and spazing and yelling at them to hook me back up to something I was already hooked up to. I remember thinking to myself wtf is wrong with me?
Unlike my previous episodes my metabolic lab’s came completely normal. A group Propionic doctors came in and said they didn’t think it was from Propionic Academia although it seems my main metabolic doctor seems leaning in that direction🤔
Over the next few weeks I made a speedy recovery with a number of different fluids and medicine however my ammonia levels were all over the place. When I first came In feeling my worst my ammonia was a 83. When I was feeling almost 100 percent my ammonia was 105 which doesn’t make sense. When I was finally sent home it was at a 76.
During my visit I saw metabolic, neurology, nephrology, cardiology. I had a brain mri, echocardiogram, ekgs and multiple kidney test all in which came back somewhat normal for what my disorder. none of them could give a true cause or solution for the muscle flair ups which is the whole reason I came to begin with. I did end up having a defibrillator put since I’ve been passing out.
Now the doctors also tested me for Lyme disease which I have a big history of and of course it came back positive/negative so the doctors blow it off even tho I have every symptom of Lyme and my episodes all started when I was diagnosed with Lyme 🤔🤔🤔
As of right now they sent me home with a new medication that is supposed to lower my ammonia levels. I’m also on a low protein/high calorie diet.Overall I am really thankful for the doctors getting back to 100 percent. I am also extremely thankful for all my family and friends who support my recovery. It rough not having answers but such is life.
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