Updated in 4/2022 in the Spring Newsletter
Hello everyone. I am 35 years old and I have Propionic Acidemia. Life with Propionic Acidemia is not always easy. I was diagnosed late which caused me to have a stroke at a very young age. After years of a wheelchair and walker I made a somewhat normal recovery.
Around 2012 a few days after one my kickboxing classes. I noticed my knee was swollen. I had thought it was from my kickboxing class but turns it was Lyme disease. Something that greatly affects me today. I get flair ups where my ammonia levels skyrocket, I get incredibly fatigued, and my muscles get pain that I can’t describe.
In 2015 I was having the weekend of my life at my brother’s campground until I woke up in the ICU that is. I decided to throw caution at the wind and tried my hand at alcohol. It led to me having metabolic acidosis. I was lucky not to suffer any suffer serious side effects.
I’ve always been into doing mindful things such as yoga and taking care of myself in general. However, it wasn’t until my parents’ relationship started to get worse that I found mindfulness meditation. Even though I saw the writing on wall, it deeply saddled me.
I remember stumbling upon Rebekah Borucki (BEXLIFE) on YouTube. She was a meditation teacher. My favorite Mantra of hers was “I am like a boat on the ocean. My thoughts they rock me just a bit, but they never carry me away. I am anchored in the here and now!” There was something about that saying that just put my mind at ease.
From that point on I became obsessed with how the mind works and the benefits of mindfulness meditation. I learned that once you realize that all you can control is yourself, your reaction, emotions and that happiness is a choice. It’s only then will you find inner peace.
Fast forward to 2020, I had been stuck with a job that I was content with not happy with. I was working as a cashier at a food store which for me was physically exhausting. Then what turned into somewhat of a blessing, the virus hit. I knew that with my health issues retail was no longer an option for me.
Instead of going though depression and anxiety over virus I decided to continue my mindfulness journey. After taking multiple classes on mindfulness and meditation I couldn’t explain to you how much it changes your life! No longer do I stress about things I can’t not control. I now own mindfulness routine that consists of nature walk, yoga and meditation. I can honestly say that I enjoy life to fullest. Moment by Moment.
Check out my website at bepresentlifestyle.com and my facebook group “Be Present Lifestyle”
Hello for those of you don’t know me, my name is Bryan. I am 31 years old. I was born with Propionic Acidemia. In the beginning doctors did not think anything was wrong with me. They told my mom I was just a sleepy baby but my mom knew that something was wrong. I was officially diagnosed at Saint Cristopher’s hospital when I was only a few months old. Shortly after I would start being seen at Children’s hospital of Philadelphia.
When I was really young I suffered a metabolic stroke and was in a comma for four days. The doctors said I would never walk or talk. That was not an option for me. Remembering the days of the wheelchair, walker and speech classes reminds me to be thankful for where I am at today. I am able to walk and talk just fine. However Propionic Acidemia has it ‘s effects on me. Until the age of 24 I had a feeding tube for drinking a special formula called Propimex – 2! Today I am able to drink it by mouth. What I like to do is mix it with two cups of whole milk with strawberry syrup. From my Propionic Acidemia I also suffer from Cardiomyopathy which effects my hart. I’m taking carvedilol 25 mg to keep it under control. I was originally on Lisinopril then I learn that it can be harmful to your kindney’s. (Important to know)
My chronic kidney disease which was not found by metabolic doctor but believed to caused by my Propionic Acidemia is at stage three. The weird thing is normally with kidney diseases they only get worse, but mine has actually gotten better. One of the big things is to drink lots of water. I try my best to drink sixty four ounces of water a day.
Now a day’s my health is really good. I work as a cashier at a food store but dream is to public speaking. I have my own apartment and exercise daily cause I know how important it is for my muscles, mind and motor skills. I like yoga but anything you can do will help. I’m a picky eater but I am trying to teach myself to eat healthier. hope this article helps give people they can a somewhat normal life with Propionic Acidemia!
Check out my blog.