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❤️
What you say is very true, dear friend @tinabrezpike, talking about illnesses with the people we love, whether family or friends, is never easy, you say it right, they each have their own problems
#Hive is an excellent place to talk about what happens to us, there are so many of us here, we always meet a person who is going through the same thing, and they can give us advice based on their experience.
I was unaware of this Crohn's disease, this is the first time I read it.
I wish with all my heart a speedy recovery.
I take this opportunity to wish you a happy Easter.
That's why I joined Hive, it's the perfect platform for me to write about this. Like you said, there are a lot of people with similar problems, and sometimes it's nice to talk to people who understand what we're going through. But I'm still looking for someone with epilepsy and Crohn's disease, I would really love to talk to someone facing the same challenges I am. Unfortunately, both diseases are not curable, but maybe someone has found better treatment than I have and they can give me advice on how to cope with the side effects. Thanks for stopping by and for your kind wishes.
Tough times never last, only tough people last.
i'm still here, I will last 💪😂❤️
I like your good attitude and how you deal with your disease 💪. I'm sure you still have a lot of things to do, remember the visit you owe to Cuba!
Thank you! 😊 You're right, I need to visit Cuba, but when conditions are better with me. I still have 3 years to save money for the trip, so I need to focus on improving myself during this time 😂
Yes of course, your health first. Three years from now I hope the situation will be better here too.
Writing about it definitely helps a lot, I'll add that it's not only good to write about it and share your journey with us, your also helping us, yeah it's probably different to read and to write about when we've realized that a health is our greatest wealth..
You always touched me talking about your health and the way you had to go to get here today. Writing about or even talking to strangers is a lot easier than to friends and family, sometimes it also helps to be as honest to ourselves as to people that are around us.
Medications do have side effects, no doubt and we're all different. I'd love to hear if you made anything easier, a healthy person wouldn't really understand ?
Kind of tips and tiny tricks we use to make us feel better, when what you have to do, is necessary to live?
Older people say they're taking tablet's, I call them medicine.
Using a 'tutorial video' for subc. injection to make me feel 'not alone' while taking blood thinners with a needle.
Thank you for sharing your health journey, for spreading the work, experience and also strength with honesty and motivation!
A true fighter or a shield maiden of modern days, have a happy, healthy and peaceful Easter
I'm grateful for your healthy blogs from the depths of my fixed heart. <3
Your words mean a lot to me. Writing about my health journey has been really helpful, and I'm glad it's been helpful for you too. It's true that realizing how important our health is can change how we see things.
I appreciate your kind words about my health journey. It's sometimes easier to talk to strangers or write about our experiences than to share them with friends and family. Being honest with ourselves and others can be healing.Medications can definitely have side effects, and they affect each of us differently. I'll be sure to share any tips or tricks that have made things easier for me. It can be hard for people who are healthy to understand what we go through just to live our lives.It's nice to find little things that make the journey easier, like using tutorial videos for injections. But, I can't do it to myself, I was sitting with this injection in my hand for 20 minutes...is just to hard 😔
Your support means a lot to me, and I'm grateful for your encouragement and motivation, thank you again for your kind words and support. Vse dobro ti želim ❤️😊
Aye, truly grateful to be living in times and place where medicine evolved soo much and grateful for the hospital system that is a lot closer than around the world.
These injections... at the start it took me yeah, at least 20 minutes of 'preperations' while turning on music, or a podcast or a playlist, when it took more than 30min I started calling people around, just to talk threw.
In the back of my mind I knew it had to be done, later became harder taking me 2,3 hours where I admit even many tears fell on my legs, but one night an old friend after a 5 hour long call, right before he had to go to sleep at around 2am, he sent me a link down below, that changed my feeling and loosened my pain of the injections, I still do it myself every time.
It's a long video, but I watched it 100x times the part right before the guy injects himself, because it made me feel.. I'm not alone, that assured me the way, guidance that everything will be alright,.. and there are many ways
I'll leave it here, its on youtube :
4.00 - 4.40Anyway, I'm totally fresh, a newbie in all of this, with a fresh new start
Hvala enako tudi tebi✌️
Your message means a lot to me. I'm so glad we don't need to pay for our medications...in Austria I'm paying only for prescription...7e 😂 and price for Stelara is 2000e 🤦♀️ Can I ask what kind of injections are you using?
Thanks for telling me about your experience. It's nice to know there are lots of ways to deal with tough situations.
Oh my... that's more than my whole car, does it come in a pack of many or just one ?
I've had fragmin normally to use only once and the rest is something like fraxieperin in the night while watching not to eat too many greenies, like salad or dark green veggies
For sure, your very welcome :)
I hope this helps you. I get this injection every six weeks. It's much better than my first treatment, which was a biological one every two weeks. We had to stop it because of side effects. Then we tried Entyvio, which I got through an IV in the hospital every three weeks, waiting for an hour each time to be over, it was stressful, and the side effects were awful. I really hope this time there won't be any bad side effects 💪
It does certainly prevent blood clout's, I do try to make myself think and feel that the body take's only the positive, healing effects out from the daily medicines, although there come those days, those days are meant to go easy on ourselves
“When things don't work out right, you got to push on through. So, keep on running, keep on moving. Everything is gonna be alright. Keep on smiling, keep on laughing. Every little thing is gonna be alright”
― Stick Figure