Remicade

Good afternoon everybody!

When I stopped writing a few months ago, I had just shared with you my fears and my feelings on having to start Remicade treatments. I cannot believe that was 9 months ago already!

Thanks to Remicade, I have stayed healthy and stable for this whole year, which is very different to the craziness I went through last year! Dr. Patel said most UC kids can only go as long as 4 weeks without a Remicade treatment before they start getting sick again, but luckily I have started only having to do them every 6 weeks!!!!!

Right after I got diagnosed last year, my mom signed me up for Chron’s and Colitis Foundation of America’s Camp Oasis here in Georgia. She said she had mixed feelings about letting me go though, because she was scared I would be around other kids with the same disease, she thought I would get scared when I saw how badly the disease can affect other people, and to see how sick some of the kids really were. Some of them are pretty much in bed all day for being in extreme pain, some were on Remicade infusions, some couldn’t really control their bowel movements, some did not have to be on preventive medicine at all. Others had a J-Pouch, and for those of you who don’t know what that is, it is what most UC people get if their disease gets bad enough and can’t be treated anymore, which is when your colon and rectum are removed in surgery, and a pouch is created and attached to your small intestine. You can still use the bathroom normally like a regular person, but pretty much have a “fake” colon and rectum. And then there are the people that need to have the colon, rectum, and anus all removed, and have a permanent ileostomy, which is the bag that gets attached to your body on the outside. Most kids there had Chron’s instead of UC though, and some of them had had surgery to remove part of their intestine, the part that gets so sick and damaged, it can’t be healed.

I had just been diagnosed less than two months before camp, so I understand now why my mom had mixed feelings about me going. On top of being around kids that might have been a lot more sick than I was, there was no way to communicate with my parents, friends, or anyone outside of camp for the week I was there. I had gained a lot of weight thanks to Prednisone, I had been having a lot of trouble staying free of C-Diff, and I had to take about 14-18 pills of medicine per day.

But, I went, and it was great! I met so many kids that actually understood what I felt and what I was going through, in a way that, no matter how much she tried, my mom could not understand. For that whole week, I did not feel like the freak I had been feeling like, I didn’t feel different anymore, I just felt like I could be me again. Being around kids that were more sick, or in a whole lot more pain, just made me thankful that I was ok. Getting to meet kids that had surgery, and had J-pouches, did not scare me, it inspired me, and it made me realize that no matter what they had gone through, they had gotten over it, and were still ok. They were also getting to do everything I got to do, which showed me that if I ever got sick enough to need surgery, that I was going to be ok too. I felt better not only when it came to surgery, but also when it came to possibly having to start on Remicade infusions. I was getting so tired of taking multiple pills a day, and still feeling sick, it got to a point where trying to take the pills were a challenge, because they started to have a terrible smell to me, so it would make me gag, and almost throw up when I took them. I cried and cried and cried, I was in tears every night when it was time to take them, it was the part of the day I had come to dread. So, at the end of the year, I decided I was going to tell Dr. Patel I wanted to start on Remicade infusions, because anything sounded better than having to take those pills.

I had a colonoscopy in January so Dr. Patel could make sure I was a good candidate for Remicade. He found out then that the pills I had been taken had not been working anyways, so Remicade was his next suggestion for me. I had mixed feelings about it, I thought I was ready for it and that was what I wanted, but now that the time had come for it to be official and coming true, I was scared and did not know what to expect. But, thank God, here I am almost 10 months later, healthier than I have been in a long time. Remicade was probably the best thing that has happened to me since I got diagnosed, because it brought back part of my life that I thought was gone after I got diagnosed. The only downside to my new treatment is the fact that I have to take weekly shots of Methotrexate at home, but that is a whole other subject, and it deserves its own post.

But for now, I will finish off by saying I am thankful for feelings better and for staying healthy ! See you guys next time!

countyourblessings

 

 

 

 

Advertisements

Life Update

Hi there!

I would like to apologize for not being here in so long, but I have a good reason for it, I promise.

The reason I first started this blog was to reach out to other people who may be having the same issues and have been struggling like I am because of this or any other disease. My mom suggested I started writing about the way I felt, because she thought it would make me feel better. She thought good things would come from it, but she didn’t expect that this would happen…

On my last post, the one about my family, I wrote about my father, the one who left to go back to Brazil when I was little, and hadn’t been in contact since. Well, somehow he came across my blog, and contacted me after 9 years. My mom has set my blog up to where she has to give permission to a comment before it gets posted, she said some people are mean and she wanted to protect me from those people who never have anything to say, in case one ever came along. Well, she was at work, and when her phone buzzed she never expected to see my father’s name on the screen. But, there it was. He had posted (or tried to anyways)a comment on my last blog entry. She didn’t even get to finish reading the first sentence and could not control her crying. She called me on the phone and asked me to stay on the phone with her while I opened up my blog on my computer at home, and told me to check my last comment. I was arguing with her that I was busy doing something else and why did I have to do that right then, when I saw his name and started reading the comment, I was paralyzed. I could not move, I could not speak, all I could do was cry. All I could make out to say to her was “Can I text him?”, since he had left all of his contact information.

Within a couple of hours of the time he left that comment, we were in contact and talking like we had never even been apart. I told him I didn’t care about the reason why he left, or the reason he hadn’t contacted me all of those years, all I cared about was making up for the time we had been apart.

I found out he is happily married to a very pretty lady, but doesn’t have any other kids. I was proud to find out he took the time he was away to study, he went to Law School in Brazil and became a police detective. I also found out I have a living grandmother and grandfather who love me very much and have kept all of the keepsakes my mom and dad saved when I was born. I have 4 cousins also, 2 boys and 2 girls. They are all about my age, some a couple of years older, or a couple of years younger. I also have 2 uncles who look just like my dad. I feel complete now knowing that I have a whole other family and that they have always thought about me, and loved me through all of these years.

My daddy and I have been talking almost everyday, we share our everyday lives with each other through the internet, and we are planning for me to go to Brazil and visit the whole family in the beginning of next year. I am so happy and excited to have found him again, and I can’t wait to see him again in person!

So, if for no other reason, at least this blog brought me my father back and gave my life a new meaning, a new reason to be excited, and something else to look forward to, and for that I am thankful.

You can check out the comment that started all of this on my “FAMILY” entry!

Stay tuned for more posts! I have a lot more catching up to do!

Thank you for stopping by! Until next time!

Caroline

Family

Hey there guys, sorry I haven’t written in a while, but ever since I had my first Remicade I have been back to school!!! Not only that but I’m moving so I have to pack. I know, right? Crazy!

So, like I had already mentioned in earlier posts, I have a pretty big family, and I want to tell you a little about them.

We will start off with my biological father. His name is Juliano, but I call him simply, “my father”. He is from Brazil. Him and my mom met when they were both teenagers. Mommy got pregnant at 15, and turned 16 one month before I was born. They dated all the way until I was 2, and then they broke up. He ended up going back to Brazil and not keeping in contact, so I don’t remember him, and didn’t get to know him at all. I always wonder if he still thinks about me, if he loves me, if he wishes he would have done things differently, and if he regrets not being part of my life, or not. But, I don’t know if I will ever know any of those things.

Let’s move on to a happier note, I probably have the coolest uncles ever, my mom’s brothers. Fabio, is 8 years older than me and Sebastian is only 5 days younger than me. I know you are probably wondering how that could be, and I will explain. My mom and grandmother got pregnant at the same time. My grandmother got pregnant with my mom when she was only 16 years old, so she isn’t an old grandma, and she had just divorced my granddaddy and gotten remarried. My mom was 15, and my grandmother, 32 at the time they got pregnant. I was born 5 days before Sebastian. Later on, when I was 6, my grandmother had another baby, so I have a aunt, Sabrina, who is 6 years younger than me!!!

Fabio is the coolest uncle in the world. I love being around him because no matter the situation he can always make me laugh, with all of his funny faces. There was this one time when he was at my house, and I was being silly, so I grabbed onto his leg as he got up and started to walk away, so he fell and kind of sat on me when he went down!! Or when he tricked me into thinking he could do this magic trick involving water and a penny, just to splash me with water when I opened my eyes.  I love being around him, because he always makes things better, sometimes by loving and talking to me about things, and sometimes just because he makes the situation just plain out hilarious.

Then there’s Sebastian who was my very first friend, who grew up with me, and to this day is my best friend. Me and him went to the same school at one point, shared the same friends, we always enjoy playing together. Yeah, sometimes he can get on my last nerve, but at the same time he can be so nice and sweet, like this one time when he gave me a little box of chocolates for no reason. Not to mention, he is funny too. Can you believe we were walking to the bus stop one day he did the Michael Jackson split i the middle of the road? Yep, that’s right the splits!!!

Sabrina one of the cutest little girls you will ever meet. Her singing is as bad as she is sweet. Lol. No, really she is a really bad singer though. You know when you are in the car you can hear this off beat singing in the background? That would be her. You turn around to look at her, and she is also dancing, rocking out to the song that is playing. Anytime I go over to their house, all she ever wants to play is hide and seek, or play dough. I love playing with her though, she actually enjoy the time she gets to spend with me, she says I am the only one who really ever plays with her. Sabrina is amazing I love her so much.

My granddaddy, sadly, passed away a little over a year after I was born. I didn’t get to know him, but I have seen pictures of him holding me, and I can tell how much he loved me and how happy he was to be around me. I will find those pictures and post them one day.

After my mom and my father broke up, she met Dustin, the man I refer to as “daddy”. He was the one who took care of me for most of my life. He taught me most of the things I know, he played with me, took me to the park, we watched movies together, played video games together, he took care of me when I was sick, he loved me even though he wasn’t my real father. My mom and him were together for quite a few years. His family was my family. Meemah was my grandmother, the best grandmother I could have asked for, she painted my nails, took me to the movies, straightened my hair, and sometimes burnt my ears in the process, lol, curled my hair, she loved me and cared for me, like a grandmother should. We watched Twilight and Harry Potter together, and we loved to crush on David Archuletta and Taylor Lautner. I had an uncle too, Dylan. He always picked on me, and teased me, but he loved and cared for me too. He was funny, and liked to walk around with no shirt on, I remember. Mawmaw was his grandmother and she was a sweet lady who loved me and treated me with care. All she ever drank was Mountain Dew, I will always remember that. Granddad was a caring man who always made little jokes and drove this old truck around, every morning when I woke up when I lived with them, he was sitting by the table, listening to old songs and doing crossword puzzles or word searches, or something like that.. Unfortunately since my mom and daddy broke up, I haven’t gotten to see them. My mom tells me they probably don’t live in town anymore, or maybe they haven’t gotten my calls and voicemails, but I don’t know if I believe it anymore. All I know is, I have tried to talk to them, and they don’t seem to want to talk to me, which sucks, I still consider them part of my family.

Then there’s Shawn, my “dad”. He has a different way of loving me. He cares, he disciplines me, teaches me right from wrong, helps me with homework, school projects, he came to see me in the hospital everyday, he would have lunch or dinner with me there when mommy was at work and couldn’t be there. He was there when we got my diagnosis, when I had to have my first Remicade, when I was dropped off at camp. He was there to comfort me from it all at home, he holds me, cuddles me, plays with me, picks on me (ALL THE TIME), makes me laugh. I can lean on him when I am sad, and I can also find a smile and a silly joke when I need to be cheered up. I am also thankful for him, because without him, I wouldn’t have my little brother and sister. It is supposed to snow in Georgia today, and Shawn is crazy about snow! I can’t wait to throw snowballs at him!

I love my whole family no matter what the situation. They are always there for me especially my mom and dad !!

“New Year, New Me”

Hey everyone! I hope you are all doing ok! I have heard adults say “New Year, New Me” for years now every time a new one starts. That expression could not have been more true for me this year. On January 6th, I had to have my second endoscopy and colonoscopy, and that was also when learned I had to say goodbye to pills and say hello to IV infusion! That’s right, yesterday was my first day having to take Remicade.

image

That’s not all though! So you know how when you are sick, you gotta start taking new medicine if old ones stop working? Yeah, that’s what happened with me, except my medicine was not working since day ONE!!!
Read More

Feelings

I am feeling a bit gloomy today. In life, there are ups and downs, whether you got a disease or not.

Living with Ulcerative Colitis isn’t easy, you have to deal with lots of needles, pills, doctor’s offices, and many different emotions. Ever since I got diagnosed, I have been missing a lot of school, missed a lot of time at school even when I am there, because I had to use the bathroom, having to wear masks. Of course people are gonna ask about it and want to know more about you, because they think you are dying. Even if that’s not at all what’s happening.

Read More

Normal Life

Hey again, guys and gals! All I have ever talked about on this blog so far, is living with Ulcertive Colitis. So, I decided this time, that instead I am gonna talk about my life when I feel like my OLD self, like the minutes I don’t spend having to take medicine, or when we are not planning for another colonoscopy, when I don’t feel like I have to use the bathroom, and when people don’t make weird faces at me for using the handicap restroom.

Read More

What’s New

Hey there guys! I hope you all have been doing good. I am back with an update on me and my new found IBD life.

For 3 months after my diagnose, which came on April 8th, 2015, I was put on some steroids. Prednisone. 40mg of it a day. I went from being the skinniest girl, to a female version of Theodore from Alvin and the Chipmunks. No, seriously, check it out.

Read More