I want to give you a little update. I believe some of you already know about my health problems. I don't have an issue writing about it, it's actually good for my mind and soul. However, discussing it with my friends is a bit challenging for me. They always ask how I'm doing, but my usual response is "I'm good." I don't want to burden them with my problems when they have their own. Still, I know they only want to help, which means a lot. But for me, it's better to sit and write about it. Perhaps there are others out there going through what I'm experiencing who might want to see how my treatment is going. The most important thing is learning to live with it and overcoming tough moments.
So, last January, I had surgery and received new medication for Crohn's disease. When they suggested I start with biological drugs again, I was hesitant because of bad experiences with previous ones. Unfortunately, for now, there's no other option for me besides biological medicine. Stem cell therapy is too expensive and far away, so it's not an option. So, I had to either accept the medicine or let my condition worsen, leading to another surgery. I follow a healthy diet and use natural medicine, but this disease isn't curable, and natural remedies only alleviate pain, not put the disease into remission. So, biological medicine it is. Stelara - a subcutaneous injection.
Due to past bad experiences, I was scared and didn't know how I'd sleep without worrying. But a few months ago, I finally managed to rebuild myself.
It's been 1 year and 4 months since my first dose, and in my previous article, I described how the first 6 months were horrible. I was sick, down, depressed, and so on. But, my husband convinced me to persevere, and after 6 months, things started to improve. My energy returned, and I became stronger each day. I could start creating again, exercising, and going to work without fear.
I've managed to put the disease in remission, but unfortunately, that doesn't mean it won't spread further, and I'll always live with it since it's incurable. I still fear my epilepsy medication might not work well, leading to seizures.
I've realized I can only give myself the injection if I'm home for the next two days. Unfortunately, I become very tired and can only sleep for two days, during which I also have petite mal attacks. These attacks are impossible to detect because I suddenly zone out and become unresponsive. When I regain consciousness, I don't remember what happened. It's almost confirmed that this is a side effect of the medication.
Another interesting thing is that I've noticed seizures occur when I'm stress-free or not planning anything. So, how can I stay active and energetic while also needing to be calm and stress-free for Crohn's? This is challenging. Two different diseases and their requirements clash.
Any advice?
There are days when I suddenly feel sick and start vomiting without warning. Unfortunately, I don't know what triggers it. It can happen anytime, even while working or driving. It's a common side effect, and I hope it doesn't happen at a bad time.
Many people, including me, lost interest in activities they normally enjoyed for the first 6 months after receiving first injection, which made me feel less alone.
These are the side effects surrounding me right now. I try to write down anything that seems unusual to determine if it's a side effect or something else.
In life, when things get complicated, we must embrace each challenge as a stepping stone toward personal growth and fulfillment. When we face challenges and beat them, we feel even happier and more fulfilled. And I'm not giving up, I still have a lot to do in life. I just need to figure some things out, and maybe with time, I'll be better.
Hey, did you know?
A petite mal seizure, also known as an absence seizure, is a type of seizure where we briefly lose awareness and we stare blankly into space for a few seconds. We might also have slight twitching or lip-smacking movements. After the seizure, we usually don't remember what happened during it.
“Promise me you’ll always remember: you’re braver than you believe, and stronger than you seem, and smarter than you think.” - A.A. Milne
With love, @tinabrezpike❤️