Changed My Mind

Blogging is something I’m new at and even though I’m not all that good at I have a definite look at blog’s and people who do blogs. For me it was a way for me to vent, a way that I could just get my feelings out about being someone dealing with a chronic illness.

With me and this blogging we did for my English I have grown to sort of like to do it, I would have to say it has been good for me to just get what I’m dealing with and being sick out on paper or for this case in a blog. I talked about how it changed my daily life, the different surgery’s I have had and the side effects and ups and downs that came with every part of this. Usually I would have been the one who complains to my parents about hating being sick and saying “why can’t I just be normal”. This has been a good thing for my mom I would have to say because I wasn’t complaining to her, I had the internet to complain and vent to and anyone that wanted to read.

Blogs can affect the lives of many people for me it did at least. Blogs do many things they give people a way to vent, a way to share what they are going through. It is way to give information about things that most people probably haven’t herd of or know much about. That was what I going for in my blogs; I wanted to give people more information about my chronic illness “juvenile polyposis disorder”. Blogs however sometimes don’t give the full story, they give only what they want, where as in my case I could have only told the bad stuff to try to get people to feel sorry for me, but that’s not what I wanted to do I wanted you to see the whole the picture.

Blogs can be used for anyone and everyone that just wants to give them a try. In my experience I know I didn’t really know anything about what blogs were and really didn’t care about them. However it was our assignment to create a blog and ever since the first one I feel as if I was addicted, I might not have been so quick at doing blog posts on a regular basis, but I got them in and used them as a way to vent as I said before.

I agree with Rushkoff in “The Interent” We’ve Got Blog. I get the vibe from the story he wrote that blogs show what and or how to look at things and it also shows things from another perspective. There is a part in his story that I agree with and that is where is talks about baseball cards were a way to have communication between people(117). It is the same with blogs in this time today that blogs give people a way to communicate on something they share an interest in or are dealing with in my case.

Blogs have changed the way I look at things and have made me realize that there are a lot of other people dealing with what I am, and has also given a way for people to communitcate in many different ways and has made me want to keep up with this blog posting.

Rushkoff, Douglas.
"The Internet is NotKilling 0ff Conversation but Actively encouraging It "

MA: PersEus Pub 2002. 116-118

Just a Pep Talk

When you’re diagnosed with a disease you should or will get prepped on what to expect and deal with, also just in general you’re going to have, to have a pep talk every now and then don’t you think? This blog I found is, very similar to my blog posts but yet also different. In “A Chronic Dose by Laurie Edwards is focusing on chronic illness, health care and writing in her blog post “Just Make It Work”.

The blog I followed is more or less for people who have a condition that I have or along those lines. In this blog Edwards also talks to several people about how they deal with there condition and also how it affects there daily life and routine. There is one specific sentence in where I feel as if it just sums up what this blog is about she says “It’s amazing what you can do when you have no choice.” That sentence to me is what I consider the thesis

There a lot of things I got out of this blog some things I agree with and others I do not. In this blog Edwards talks to some people about how they dealt or how they are dealing with a chronic illness right now. One big part that I feel is a very good point in this blog is Edwards interviewed a lady named Vicki with cystic fibrosis. Vicki said one thing that to me stuck out she says that people commend her on how strong she is and what she is going through, however she says its not that she chooses to but she has to, something healthy people do not always consider. In my opinion this is meaning that she did not choose to get sick nor choose to have to live with it but has to, she has to be strong for herself to push her self to get through it. Briefly speaking and giving a short explanation on what this essay is I would say it’s just dealing with it. Edwards talks to people about what they are going through how hard it is and how they do it. Believe it or not I am sure if you read this blog you will learn some things you did not know about or really even consider. With me being sick and having to deal with it everyday it’s a big deal to me that people learn and read or talk to someone who is dealing with a chronic illness and that is exactly what Edwards does in this blog post. There are many things in this blog that I can completely relate to and others that I just want to say “WHAT”? Me being a person going through a similar situation as those in Edwards blog some people had opinions that I had never really considered.

Edwards correctly notes how difficult it is to live a chronic illness by stating that “Chronic illness complicates the daily negotiations and moments where we just need to make it work that we all face.” I really like and agree with this statement because it is how I feel sometimes, I just want to give up and say I quit but really I can’t because to me I’m letting myself down. Having a chronic illness can complicate daily life in so many ways, for me it starts with having to remember my medicine every morning, I have to take around four pills every morning and every night before I go to bed it gets really annoying very fast, especially if I want to go stay with friends or go stay with my sisters I have to remember to take my medicine with me and I have to remember to actually take it because I don’t have my mom right there reminding me granted she usually will send me a text or something reminding me but I still don’t always remember.

There is one part in this blog I do not agree with and that is where she says that she had talked a lot about cancer mythology and says “the idea that having cancer makes you stronger, or more spiritual” because in my opinion sometimes people don’t always feel like they have gotten stronger they fell as if they have just gone down hill and there is nothing to look up to anymore because they think this is the end. Yes I agree that people should always look at the glass half full instead of half empty.

However sometimes when you are dealing with a sickness like this, you don’t think about looking at it half full you think this is the end you might as well give up, honestly with me being in the hospital several times I have just wanted to say “stop I don’t want to be sick I don’t want to go through this anymore”. I know that some people out there have felt the same that is why with that saying I disagree because people don’t always think they are stronger now that they are sick, however yes in some cases once your told you are sick it makes you realize that there are several things that you still want to do It makes you want to push yourself therefore you think you are getting stronger.

Edwards does a really good job in my opinion talking about chronic illness and talking with other people about it (there are some supprt groups out there that deal with chronic illness's you can go to and talk about as you see in my link). She makes some really good points and I feel as if it is really informative especially for people that don’t always know exactly what to think about it. She says its amazing what you can do when you have no choice which in my opinion I’m sure everyone can relate to that at some point in there life. At the end of the post Edwards writes “In the end, maybe this circuitous post is really nothing more than a pep talk”. I like how she puts this in because depending on how or who reads this it could be a pep talk for you, it could be a pep talk for someone who is feeling down about being sick or just a pep talk for someone being overwhelmed with the pain and all the stress from the medications and wondering will I ever get better.

Determination

I have learned from struggle with juvenile polyposis disorder that my life is not always easy, but worth living. I hope this blog can catch your attention and make you somehow understand what it’s like to be sick and how to deal with it.

All of it started back in 2006 when I was having excruciating stomach pains it felt like sharp pains almost like someone stabbing me with a sharp knife right around the lower part of my stomach, which most doctors call the lower right quadrant. The pain was to the point where I was curled up in a ball most of the time, and if I tried to walk the pain hurt so bad that I was just right back down in a ball. It was at that point that my mom decided to take me to the hospital and they admitted me and did a lot of tests.

They did an MRI, which is where I lay in this big machine similar to a C.A.T scan or x ray, but without radiation and includes more detail with the pictures. They also did an ultra sound which I’m sure most people should or have at least one time in their life heard about it however an ultra sound is just a machine using high frequency waves maps a detailed image of what’s inside a persons stomach. Also the doctors did a C.A.T scan, which is like an x- ray however you sometimes have to drink gross stuff which is a special fluid which helps outline the lining of your stomach, or you can have the fluid pumped into you through an IV. It basically lights up your insides and you go through this big circular dome and it takes pictures using radiation. Lastly they did blood work that is just basically like a shot and they pull blood out.

After all these tests, I felt as if nothing was getting resolved on why I was having this pain. Eventually the doctors got my pain under control but that was with help of the medicine. At the end of that hospital visit in October of 2006, nothing really got resolved, the doctors told me part of my pain was caused by I.B.S (Irritable bowel syndrome). After they got my pain resolved they sent me home with medicine and a follow up appointment with my doctor. So after that I kind of just went with it and figured it was what they said IBS.

I went through ups and downs through out the next year of having the pain come and go but nothing bad enough to put me in the hospital. Since I was still getting the pain every now and then the doctors decided to do what the call an endoscopy, which is where they put you to sleep and stick a camera and what I compare the biopsy collecter, to the things in an arcade where your trying to win a stuffed animal like those claw things which of course are smaller. But they stuck that and a camera tube down my throat. When they did that the doctors pulled out a few polyps but were very small and then sent them off to get a biopsy and they came back benign which means, the way I understand it the cancer cells that were pretty much dead.

It was in 2008 when I realized the pain was back and it was ten times worse. Once again I was taken to the hospital and yet again admitted. The doctors came in and talked to me and told me that after looking at my test results which were the same tests I took back in 2006, an MRI, C.A.T scan, ultra sound and blood work. This time the tests did not come back normal. This time the ultra sound was showing some inflammation, and blood work came back and was told I was anemic. Also with the medicine not controlling my pain the doctors decided to do another endoscopy and also a colonoscopy which I am sure everyone knows what that is, which is kind of embarrassing, however it’s what they have to do to try to figure out my problem. So once they did the necessary procedures they found more polyps and sent them out for biopsies again. The doctor’s main concern was why my body is producing these so fast. Once they got the biopsies back they told me that one of the polyps they had removed came out in fragments and was not benign they were very concerned with this so put me on medicine to try to stop the cancer cells from spreading. I was sent home and just pretty much lived on medicine every morning and night had to take like three pills was not fun at all.

In 2009 the pain was back, yet again the doctors did surgery and realized the cancer cells had spread and started producing more polyps on my colon and stomach. Since then I have been in and out of the hospital having the same procedures and being on the same medicine. It’s not fun having to deal with something like this and knowing that it is spreading through my body and half the time not knowing what’s going to happen.

Since these procedures I have learned that I need to just take one day at a time and deal with what comes my way. I know it could be worse but sometimes I feel like its only going to get worse but that’s just a wait and see I guess. With what has happened had made me really live by the quote take one day at a time step by step.

Good News!!

Well judging by the title of my post I’m sure you can guess what this blog is going to be about. FINALLY I have received some good news, its not the cure to my problem but I will take what I can get, I had recently been to the doctors for what I consider a check up and also to schedule when they are going to do my endoscopy again, during that visit I had received some news that made my day.

Last week I went to the doctors thinking it was just any other visit, thinking he’s just going to ask me how I’m feeling, how the medicine is working and to try to schedule another surgery well this time that wasn’t the case. He started out the normal routine blood pressure which I hate because it squeezes your arm so tight and gives me this tingly feeling like when your foot falls asleep so like I was saying It started out with normal visit blood pressure, pain on a scale of 1-10 and so on.

After all the normal stuff the doctor came in and I just had this feeling maybe something good would come out of this visit. Well it did my doctor started talking to me telling me that hes taking me off some of the medicine that I am which means now I only have to take one pill twice a day now and that is because he said after some of the tests and surgery’s he has decided to put me on this new medication that should help the pain a lot not necessarily get rid of the pain but will take the level down to possibly like 2. Yes its not the news someone would have wanted but I will take it, not having to take 3 or 4 pills a day now only one is a lot better to me, also with this medicine and the surgery they are hoping to finally come to a conclusion of that this could be but I can only hope and see.

What to Eat...What Not to Eat

Believe it or not I am supposed to be on a very strict diet of what foods I can eat and what I shouldn’t. Granted I do not always listen to what I should and shouldn’t eat but I think I should because like the doctors have told me some foods and drinks can make me be in more pain than before I had even eaten anything yet.

Some of the foods I shouldn’t be eating are along the lines of spicy or greasy such as pizza and yes I do eat pizza I’m not someone that doesn’t like it however a lot of times I have to take a napkin or something like that and pat it on the pizza to get the grease off it sounds gross but its something I have to do in order to not have a lot of grease in my system. Another food I should be eating is spicy things like for instance at buffalo wild wings I cant get the spicy or hot wings. They are really good when I first get them and after I have eaten them but after that it starts to make me sick. For some reason that I still don’t really get even though the doctors have explained it to me it causes my pain to come and sometimes gets really bad. So therefore I can have spicy or greasy foods which sometimes I do not always listen to that and do eat those things and deal with the consequences when it comes.

I also shouldn’t be drinking certain pops such as pepsi or coke or mt.dew which I’m sure most of you know I don’t listen to that rule really either because I like mt.dew but because it has caffeine in it, it also messes with my stomach and causes me to get really bad stomach pain so therefore I have had to lay off on the pop which I know pop is definitely not good for me which I'm glad I have been told to lay off it. So I guess what I have been saying in this blog is being sick affects more than what you think it affects when you go out with your friends to eat or when you just really want that pop that you cant have and like everyone does I break the rules of what I should and shouldn’t eat. And yes it sucks having to be a strict diet, think if you could only eat certain things or drink certain things it would suck don’t you think.

Stress on top of it All

Stress can over take someone’s life, well with me it’s very easy to get stressed out dealing with school and work and being sick all the time of course I’m going to get stressed out. Getting stressed can defiantly affect my health, sometimes its like im just sick again. There are a lot of things that stress me out and believe it or not I get stressed very easily.

School, work, and just being sick in general can stress someone like me out. When someone dealing with what I have gets stressed it’s like a war path so just stay out of my way. Having to remember to take medicine gets very annoying and can stress me out having to take it every morning and night. Gets very annoying, also going to school stress’s me out don’t get me wrong what person wants to go to school I know I don’t but going to school and juggling that and being sick defiantly stress’s me out.

When I get stressed I feel like I have to load up on my medicine to just feel better. Usually when someone gets stressed out they just get a headache or are just really tired well not me. It makes my pain that I have a lot worse, it makes me sick all I want to do is sleep and not do anything. I would much rather just get stressed over something little and work past it than get stressed over something little and have to deal with it for a while because adds more on to me being sick. So be happy when you get stressed that you don’t have to deal with everything else that comes with it like I do.

Whats Next?

You would think that by now its time that they would know what’s going on with me and be able to fix it or find something to make me not in pain other than having to take medicine every day and night. Well guess what nope the doctors haven’t and gets really annoying. How do you think you would feel if it seems every other day you were sick or if you had to remember to take several different medicine’s all that time and still not knowing what is wrong or if you are ever going to be able to as I say feel normal again.

I feel like I can’t just go out and have fun with not feeling at least a little sick. Yeah I don’t feel like miserable all the time but that is thanks to the several medicine’s I take however I think everyday I feel at least a little as I say under the weather. I feel like it’s so repetitive the same old thing saying the same thing all the time and still no answers. I’m sick of being sick and feeling like crap, I’m sick of not knowing when I’m just going to hit with a sharp knife stabbing pain.

Lucky for me its almost time for another surgery as I said earlier in my posts I have to get one every three to six months and its time for another endoscopy I’m hoping that maybe they will find something this time that will give them more information because I’m just ready to stop taking all these medicines. I’m ready to just be able to feel better all I really want is just a week where I can just go without taking medicine and without feeling sick at all but I know that I cant because if I go a day without medicine I’m tired and feel even worse. I’m just ready to be normal again as I say but I guess I can say I have plenty of time to give and that’s more than some others can say.

Still Going

My last two blogs I told you how I deal it with everyday and how I got the news and what the news was. Well now as I say I’m back in at round three and what I mean by that is I’m back in the hospital and surgery and news yet again.

You probably think that I all I do is go back and fourth from the hospital well your not the only one I feel like that is my second home and sometimes I feel like I spend more time there than I have at my house, it gets really annoying after awhile, and I know it got annoying for my family and friends but I know deep down they cared about me and would do whatever and come whenever no matter how annoying and boring it got. Anyways after I got the news back in 2008 I was doing ok for a while just remembering to take my medicine and trying to move on thinking maybe this medicine was helping and I was finally getting better well I think I got my hope up to much.

In early 2009 I was back for the third time in the hospital. I went through the same tests and same surgeries I was finally thinking I was becoming a pro at this whole surgery thing considering it was the same exact surgery each time just removing polyps my insides, however it did suck but after this third time the doctors came in again and told me the polyps were still malignant and they had to keep an eye on me. I stayed in the hospital for a week and half and went home with the same medicine and was told to come back in two weeks to start a new round of medicine.

Everyday

I wanted to take a break with telling you how the hospital visits go and with what all the doctors say. I want to tell you how I deal with it on an every day basis. Well it’s hard as I’m sure you can imagine. Sometimes I think it will get easier but I’m still waiting for that day to come, it hasn’t gotten any worse but definitely not any better.It’s like an everyday ritual I have to do. I get up in the morning and take my medicine and at night take my medicine and go to bed it sucks trying to always remember to take it but I have my family that is always on me about taking which yes sucks but in the end I have to look past that and know they are only doing it for the best of me.

I have my good days and bad days however back in October I had more bad days than good. It comes and goes like that and sometimes I think it’s never going to stop but I know sooner than later it will. Dealing with it everyday is the hardest especially when I first get up I know if it’s going to be good day or not. Some days I wake up feeling like I didn’t even sleep I’m so exhausted others, I wake up feeling like I am full of energy it just depends. It’s hard to tell how I’m going to feel through out the day. Everyday I think to myself I’m going to get better I’m not going to be sick anymore and I know if I just keep saying it, it will happen. Like I said I go through the ups and downs of feeling very tired and wore out because of my medicine and then I could feel ten times better the next day I think people that know me can tell when I’m having the good days and bad because when I have a good day I’m always smiling and laughing but bad days I just look like I could cry at any minute. I know there is more I could tell you about how it affects me everyday but I will save that for later.

The News

I left off with my last blog talking about my second trip and how they ended up doing another endoscopy. I will just re fresh your memory, the doctors went in and removed two more polyps (warning graphic) that second time and sent them for biopsies and I left off with the doctors were going to come in and talk to me about my test results.

I was still in the hospital because my pain was still not really controlled but was getting better however the doctors came in I thought there must have been like four or five of them it was like I was some kind of test dummy that they had to show off to all the other doctors. Anyways my Gastroenterology doctor also know as GI he came and was telling me that the polyps they had removed had cancer cells in them that were not binine. And they could possibly spread. I really wasn’t understanding exactly what was going so I asked them to explain it a little differently for me and so basically what they had said was the polyps my body is producing is not normal for my age. He told me that everyone has polyps that come and go in their body however mine are staying and causing problems. My mom’s main concern was did they get all the polyps out when they were just in and the doctor said yes it came out in fragments however so they might have to go back in and look. I still really wasn’t sure what was going on all I knew at that point was that I had to come in every month to get scoped and to make sure I wasn’t producing them anywhere else and in between that time I was put on medicine to try to stop the polyps from spreading. The doctors had told me this medicine was going to make me feel very tired a lot and could make me sick.

So like I said all because of this I felt as if I had missed out on my senior year of high school because I was either sick or just in to much pain to do anything with my friends or family. But luckily my friends and family stood by my side. I’m sure with most people that read this they are going to say oh my gosh this girl had cancer however I don’t look at it like that the doctors at that point in time did not specifically come out and say oh you have cancer they told me the polyps they had removed had cancer cells and they needed to watch to make sure it didn’t spread so once again at that time I was not told I specifically had cancer like people think lung cancer or breast cancer well nope that wasn’t me. After the news they told me they sent me home with medicine and I was told I had to come in every month to get an endoscopy and I had to continue to take my medicine.

Second Trip

I had previously told you about one of my first of many visits to the hospital. Now I plan on talking about my second trip. After while you would think it would be getting really annoying of feeling like crap well yup your right it sucks. I felt as if I could never do anything without feeling like crap. I would get ready to go out friends and then by the time I was already it would hit me and I would feel really weak and tired and just couldn’t go out. I felt as if I lost out on my last two years of high school. My junior year I was a varsity cheerleader for football and basketball season well I’m sure you can guess what happened I made it through football season and then found out all I couldn’t cheer basketball season because I was pushing myself too hard on the nights of games. I missed out on something I loved to do. I also did competition cheerleading and hate to stop that all because of what the doctors had yet to figure out.

My second trip to the hospital was in sometime in late 2007 early 2008 can’t really remember the exact date but I felt as if I was ten times worse than my first trip. Just like before the doctor in the emergency room did the usual the x rays cat scans all that stuff and I just knew they were going to say the same thing. And yup I was correct they admitted me gave me fluids kept the pain meds in me to try to get my pain level down just like the last time. So yet again I got another endoscopy they pulled out two my polups however they came out in fragments they sent those for biopsies and kept me in the hospital for probably around a week or so mostly because my pain was not under control. The doctors came in and talked to my mom and I about what my test results were from the last scope. That’s yet again another post to much detail for this one it needs a blog to its self.

How it all started

This is my first blog on how it all started. I will be talking about how i first was told about what I had and just in general how it all started. It all started when one night in 2007 I was feeling really sick and had this really bad sharp pain in my lower abdomen stomach area. the pain got so bad that I ended up having to go to the hospital because it was so bad that i could hardly walk. When I got to the hospital they started doing tests like cat scans and x rays and they also ended up doing an MRI. The tests ended up coming back all normal, however because my pain was not getting under control they admitted me and told me the next day they were planning on doing surgery.

The next day the did an endoscopy which is where they put you to sleep and they stick a tube with a camera attached to it and look in your intestine and lower intestine the doctors found a polyps in my lower intestine and removed them and sent them biopsies. From that surgery the polyps came back Binnie. The doctors told my mom and I that I might not always get that lucky that they might not always come back Binnie. After the doctors got my pain under control the sent me home with medicine and hoping that the pain i was having would be gone. However that was just the beggining yes it stopped for a while but then after about a month i got the pain and I went through everything again. Now thats another blog for later to tell you guys about what happend with my second trip to the hospital.

Start of my Blogs

Hey everyone who will be reading my blogs. For all my blogs I am going to be talking about how I'm dealing and coping with my disorder its something called juvinele polyposis disorder. I will be talking in my blogs about exactly what it is and how i deal with all the treatments and how everyone in my family deals with it. I will also be talking about the things i can and can not do anymore. There are so many things that people dont know about this condition and how it can really afftect someones life.

I'm not blogging about this stuff to get attention or for people to feel sorry for me im doing it so other people can know how i deal and can learn exactly what it is. I'm also doing it so people out there realize its not something to just ignore and think everything is ok because its not yes when you first get it its not as bad as cancer however like in my case it works it way to be that bad. I plan on talking about how much change this has brought good and bad and I want other people who are dealing with this or who are reading about it to know how bad it can get and what exactly you have to do and deal with.