- Joined
- Oct 22, 2015
- Messages
- 33
Hello everyone! I'm back! 
I decided to make small updates about my current situation in hopes it might help the newbies and parents of diagnosed children.
This is my 6 months update!
Everything is fine right now. I haven't had any flares and I'm no longer in and out of the hospital. However, I did have a crisis a couple months ago that scared the whole medical team that follows my case. It was nothing serious, fortunately, just a bad cold that made my side hurt and I had really bad fever from it.
I've been out more often. My mother allows me to go to meet ups and conventions. I socialize with people of my age that have the same tastes as me and was able to make a bunch of friends that care a lot for me.
I cut my hair short to celebrate the new start of my life and dyed it. I decided to do this because I wanted to leave all the bad things behind and start this new chapter of my life with confidence!
I wasn't able to keep up with school because of health issues and I will have to repeat the school year (NOW I HAVE TO WAIT 2 MORE YEARS FOR PROM GOD DAMMIT), however this is a good thing meaning I will be able to dedicate myself even more and get better grades and it also helped me think more about my future.
I've decided what I wanted to do when I complete 18 years of age, which will happen in 4 months! But I still have some lingering confusion and would love some help.
- I will finish high school and try my best to enter the university course I've always wanted : Asian Studies. I will try to get summer jobs and save up money to pay for my school fees and medical expenses so my mother can focus on my brother and not worry about me. However I don't have a plan on what career I want to pursue after university but there is something I'm currently interested on. It's called "hospital operating assistant".
I would like to do something for the hospital that took care of me. I was born with hearing problems and the hospital where I was hospitalized when I was a child is the same that took care of me when I had my Crohn's crisis 6 months ago. I'm really grateful to them and since it's a children's hospital I won't be able to be followed there once I turn 18, but I really love that place deeply and would like to help them out. Operating Assistants don't need a specific course so I was happy to find out about that. I've talked with my mother and she's not against the idea and told me to follow my heart. I have a huge respect for doctors and teachers since a very early age and one of my dreams was to be either of those but being a doctor would be too hard for me since I have needle phobia and I get too stressed to teach. I want to help the children there just like I was helped when I was "dying" in that bed. I want to teach them and listen to their problems and tell them my story in hopes they get motivated as well and don't give up on their lives.
Now, things aren't always perfect and I'm having bad things happening too.
I've noticed something that is paining me a lot: my hair keeps falling. I know it's supposed to be normal, but it's a lot of hair that falls. I'm a girl, I love my hair like all girls do, so it's really hurtful. I'm going to tell this to my doctor because it could be one of Imuran's side effects.
I also seem to be having memory problems. I forget easily and sometimes I don't remember people I met before. I hope this isn't something serious and affects my studies and work life.
Now for my tips!
Parents! Please talk to your children. Children with Cronh's hide a lot of things inside. I learned this the hard way. Listen to them and don't say things like "Don't whine about it" and "That's just a phase, you'll be fine tomorrow", it'll pain them so listen closely and try to understand them and help them even if it's just a minor thing. A hug and a soothing hand helps.
Newbies! You will experience a lot of changes with your body and mind, and FOOD! You won't be able to eat certain things at first but you might be able to do eat them later on. For example, I wasn't able to eat eggs and now I can eat them freely but not excessively. Write in a diary what you ate and how you felt eating that and try every 3 weeks something that made you feel bad, it helped me.
I will update every 6 months! See you guys in a bit!
I decided to make small updates about my current situation in hopes it might help the newbies and parents of diagnosed children.
This is my 6 months update!
Everything is fine right now. I haven't had any flares and I'm no longer in and out of the hospital. However, I did have a crisis a couple months ago that scared the whole medical team that follows my case. It was nothing serious, fortunately, just a bad cold that made my side hurt and I had really bad fever from it.
I've been out more often. My mother allows me to go to meet ups and conventions. I socialize with people of my age that have the same tastes as me and was able to make a bunch of friends that care a lot for me.
I cut my hair short to celebrate the new start of my life and dyed it. I decided to do this because I wanted to leave all the bad things behind and start this new chapter of my life with confidence!
I wasn't able to keep up with school because of health issues and I will have to repeat the school year (NOW I HAVE TO WAIT 2 MORE YEARS FOR PROM GOD DAMMIT), however this is a good thing meaning I will be able to dedicate myself even more and get better grades and it also helped me think more about my future.
I've decided what I wanted to do when I complete 18 years of age, which will happen in 4 months! But I still have some lingering confusion and would love some help.
- I will finish high school and try my best to enter the university course I've always wanted : Asian Studies. I will try to get summer jobs and save up money to pay for my school fees and medical expenses so my mother can focus on my brother and not worry about me. However I don't have a plan on what career I want to pursue after university but there is something I'm currently interested on. It's called "hospital operating assistant".
I would like to do something for the hospital that took care of me. I was born with hearing problems and the hospital where I was hospitalized when I was a child is the same that took care of me when I had my Crohn's crisis 6 months ago. I'm really grateful to them and since it's a children's hospital I won't be able to be followed there once I turn 18, but I really love that place deeply and would like to help them out. Operating Assistants don't need a specific course so I was happy to find out about that. I've talked with my mother and she's not against the idea and told me to follow my heart. I have a huge respect for doctors and teachers since a very early age and one of my dreams was to be either of those but being a doctor would be too hard for me since I have needle phobia and I get too stressed to teach. I want to help the children there just like I was helped when I was "dying" in that bed. I want to teach them and listen to their problems and tell them my story in hopes they get motivated as well and don't give up on their lives.
Now, things aren't always perfect and I'm having bad things happening too.
I've noticed something that is paining me a lot: my hair keeps falling. I know it's supposed to be normal, but it's a lot of hair that falls. I'm a girl, I love my hair like all girls do, so it's really hurtful. I'm going to tell this to my doctor because it could be one of Imuran's side effects.
I also seem to be having memory problems. I forget easily and sometimes I don't remember people I met before. I hope this isn't something serious and affects my studies and work life.
Now for my tips!
Parents! Please talk to your children. Children with Cronh's hide a lot of things inside. I learned this the hard way. Listen to them and don't say things like "Don't whine about it" and "That's just a phase, you'll be fine tomorrow", it'll pain them so listen closely and try to understand them and help them even if it's just a minor thing. A hug and a soothing hand helps.
Newbies! You will experience a lot of changes with your body and mind, and FOOD! You won't be able to eat certain things at first but you might be able to do eat them later on. For example, I wasn't able to eat eggs and now I can eat them freely but not excessively. Write in a diary what you ate and how you felt eating that and try every 3 weeks something that made you feel bad, it helped me.
I will update every 6 months! See you guys in a bit!
