Hey guys - I'm kind of in a sad, watch trashy television and cry your eyes out mood, today my infusion nurse and I exchanged presents and were just hanging out and enjoying each other's company, we watched the Sound of Music and she and I sang every word at the top of our lungs, but soon after she told me this would be her last infusion with me. She got a new job, I started to cry, this wouldn't be a big deal except my other weekly nurse is retiring next week... I'm upset so I just thought I would post this, I'm gonna go watch some tv and relax. Change stinks, but I'll get over it
Sarah
Monday, December 21, 2015
Tuesday, October 27, 2015
College life and health
Hey guys -
It has been forever (and a day) so now I am a little bit over half way done with my first semester of college (YAY!) I thought I would update you guys on my trachea thing, and actually! I only have a baseline IF I have an issue in the future yay!!! So college has been keeping me super busy, it has definitely required some adjustment and I'm still trying to figure out a major thing - studying! I'm horrible at studying no matter how much I put my mind to it - any friends have tips? Not much else new with me, so I'll post as soon as something cool happens
Sarah
It has been forever (and a day) so now I am a little bit over half way done with my first semester of college (YAY!) I thought I would update you guys on my trachea thing, and actually! I only have a baseline IF I have an issue in the future yay!!! So college has been keeping me super busy, it has definitely required some adjustment and I'm still trying to figure out a major thing - studying! I'm horrible at studying no matter how much I put my mind to it - any friends have tips? Not much else new with me, so I'll post as soon as something cool happens
Sarah
Saturday, July 18, 2015
Health updates
Hey dear readers - I am in Delaware this weekend for a Morquio symposium and I had a doctor's appointment yesterday and I got some news that is less than good, but not quite at the level of terrible. I have been having trouble with my breathing for the past 3 months - but I've kept it quiet because I don't want to freak people out, the doctor wasn't sure if it was my allergies or what. So yesterday I had a repeat PFT (Pulmonary Function Test) and the numbers were the same as they were 3 months ago so my issue hasn't gotten worse, which is good. After my PFT I met with my pulmonologist who was totally calm about the whole thing, and that was great. He said I have to excersize more (we are getting a puppy soon so I will walk her) and the next time I come down here to see Doctor Bober I need to have a CT scan of my lungs and trachea, which was recently discovered to be a common issue for Morquio A patients even with the Enzyme because the trachea is cartlidge and doesn't have blood flow, meaning that the enzyme only goes in my blood and fixes things with my blood, so I have to have that when I come back next month when we return home I am going to be hooked up to a pulse ox for a night or two to see if I need a sleep study as for the fix, I have to use a nebuliser before I excersize and I need to have an inhaler of steroids twice a day everyday and rinse after the steroids starting on Monday. This isn't a big deal, but it's kind of a bummer because other than my hearing, this is the first piece of bad news we have had since the beginning of the trial, well we are on our way for day 2 of the conference thanks for reading guys!
Sarah
Tuesday, May 26, 2015
High School reflection
So here we are, I've been horrible at blogging to my promises (as always) but today is my last official day of high school, it is bittersweet, it's only 3rd period and I broke down in tears already. I'm going to be an adult in 10 days, I'm gonna be a high school graduate in 8. I'm growing up, and I don't know if I am ready to be an adult, I love being a kid, I don't ever want to grow up (They denied my application to be a lost boy, as I am a girl...) I did not like High School but the experiences have made me stronger and the people I made have truly made a difference in my life. I may not have had your typical high school experience with boyfriends and parties, but I couldn't be more proud of the experiences I have had, and I just want to say thank you to each and every single person reading this, without your support, who knows where I would be right now. Thank you all, much love,
Sarah Van Orden
Sarah Van Orden
Sunday, April 26, 2015
Cyberbullying (Warning: Curse and Offensive Words ahead)
Hey everyone,
Normally, I want this blog to be full of happy things, but what happened needs to be out there, and writing helps me to move on. So Friday into Saturday, was one of the worst times I was ever cyberbullied, and I know that if you are on my personal Facebook, you've only heard one thing about it, the worst thing they could call me, a "Lopsided Retarded Bitch" but there is way more to this story.
I was relaxing with my parents, watching TV before heading to bed, and all of the sudden, my phone started freaking out and lighting up. I ignored it until around 10:45 when we decided it was time to go to bed. They first commented, mentioning their friend on my selfie with my new phone "Is this a joke?" and immediately "idk ;/" so my friends thought they were talking about my appearance and came to my defense, thank you again to those who did, and then the people started getting defensive and started calling my friends horrible names like whore, cunt, trashbag. I came in and I started getting mad, I'm fine if you hurt me and are mean to me but the second you bring my friends into it, I get mad. So then as I was defending my friends I was told to kill myself, I defended them and got back "i didn't ask for a speech bitch I asked for your funeral date and time" then an innocent person who was defending me got told "Go Roll ya wheelchair in traffic. You ugly retarded whore" that same person was told "God hates you and your deformed friends. Kill yourself before your disease does you albino bitch" I got called a "sobber mouth retarded bitch" for defending my friends.
I was also called a "slow ass retarded cripple bitch" "stupid monkey looking bitch" and then my friends were told it was their fault this happened because they "assumed" and tried to help me.
Needless to say, I was devestated by these people, I cried, and stayed up until 2am trying to report and delete everything they said mean, even the screenshots they posted were deleted and reported, I blocked and reported them and I made my own instagram private, I hope this never happens to anyone else ever again. You see those movies about cyberbullying, but its not like that, for most incidents its not someone you know, its a complete stranger.
~ Sarah
Normally, I want this blog to be full of happy things, but what happened needs to be out there, and writing helps me to move on. So Friday into Saturday, was one of the worst times I was ever cyberbullied, and I know that if you are on my personal Facebook, you've only heard one thing about it, the worst thing they could call me, a "Lopsided Retarded Bitch" but there is way more to this story.
I was relaxing with my parents, watching TV before heading to bed, and all of the sudden, my phone started freaking out and lighting up. I ignored it until around 10:45 when we decided it was time to go to bed. They first commented, mentioning their friend on my selfie with my new phone "Is this a joke?" and immediately "idk ;/" so my friends thought they were talking about my appearance and came to my defense, thank you again to those who did, and then the people started getting defensive and started calling my friends horrible names like whore, cunt, trashbag. I came in and I started getting mad, I'm fine if you hurt me and are mean to me but the second you bring my friends into it, I get mad. So then as I was defending my friends I was told to kill myself, I defended them and got back "i didn't ask for a speech bitch I asked for your funeral date and time" then an innocent person who was defending me got told "Go Roll ya wheelchair in traffic. You ugly retarded whore" that same person was told "God hates you and your deformed friends. Kill yourself before your disease does you albino bitch" I got called a "sobber mouth retarded bitch" for defending my friends.
I was also called a "slow ass retarded cripple bitch" "stupid monkey looking bitch" and then my friends were told it was their fault this happened because they "assumed" and tried to help me.
Needless to say, I was devestated by these people, I cried, and stayed up until 2am trying to report and delete everything they said mean, even the screenshots they posted were deleted and reported, I blocked and reported them and I made my own instagram private, I hope this never happens to anyone else ever again. You see those movies about cyberbullying, but its not like that, for most incidents its not someone you know, its a complete stranger.
~ Sarah
Tuesday, April 7, 2015
Happy Birthday Celebrate the Little Moments!!
Happy 2nd birthday to this blog!!!! It's on Thursday and I will be so busy preparing for prom the next day that I thought I would post the birthday post early!!
Monday, April 6, 2015
Senior Year
Hello Lovely Readers,
Have I really not blogged since the Fourth of July? Wow! Well if the title does not make it obvious, Senior Year has kept me busy!
I will be graduating in little under 2 months and my 18th birthday is 2 months from today. It's funny, but I think the past couple months have matured me in ways that I don't even understand, I'm still the same person, but as I sit in the library and write this post with a friend nearby, I hear a tenth grader complaining to her teacher about how difficult her term paper is, and I sit there remembering that was me 2 short years ago, I was writing a paper on Harry Potter vs. Christianity, and now I sit here thinking "It's only difficult because you made it that way" and I sit here listening to some of the immaturity that one hears in a high school setting and it irritates me, how can people be so thankless? We have an opportunity that most people don't, you should relish in that, not complain. Instead of being friends with most people in my grade, I have 2 or 3 (depending on the day) really good friends in my grade, 2 really good friends who are Juniors (Yes, Emily D. you are one of them) 1 really good friend who is a Sophomore, and no Freshman.
A lot of people think this is a sad fact, but, I will NOT miss high school, I won't miss the people who are in my class, I won't miss drama, however I will miss teachers, I think I get along with teachers better than I get along with people my age.
In the fall hopefully I will be attending Penn State World campus to major in Social Work, I love helping people, I love kids, so why don't I combine the two and create the best job for me. Now, on the flip side, my Senior Prom is this Friday (!!!!!!!!!!!) and I thought I would show everyone my dress (so far, picking it up on Tuesday) and what I'm thinking for my hair.
And now it's nearing the end of my class period, so soon I will have to go to lunch. I am going to try to blog at least once a week from here until the beginning of my first semester of college. I'll talk to you all next week!
Much Love,
Sarah
Have I really not blogged since the Fourth of July? Wow! Well if the title does not make it obvious, Senior Year has kept me busy!
I will be graduating in little under 2 months and my 18th birthday is 2 months from today. It's funny, but I think the past couple months have matured me in ways that I don't even understand, I'm still the same person, but as I sit in the library and write this post with a friend nearby, I hear a tenth grader complaining to her teacher about how difficult her term paper is, and I sit there remembering that was me 2 short years ago, I was writing a paper on Harry Potter vs. Christianity, and now I sit here thinking "It's only difficult because you made it that way" and I sit here listening to some of the immaturity that one hears in a high school setting and it irritates me, how can people be so thankless? We have an opportunity that most people don't, you should relish in that, not complain. Instead of being friends with most people in my grade, I have 2 or 3 (depending on the day) really good friends in my grade, 2 really good friends who are Juniors (Yes, Emily D. you are one of them) 1 really good friend who is a Sophomore, and no Freshman.
A lot of people think this is a sad fact, but, I will NOT miss high school, I won't miss the people who are in my class, I won't miss drama, however I will miss teachers, I think I get along with teachers better than I get along with people my age.
In the fall hopefully I will be attending Penn State World campus to major in Social Work, I love helping people, I love kids, so why don't I combine the two and create the best job for me. Now, on the flip side, my Senior Prom is this Friday (!!!!!!!!!!!) and I thought I would show everyone my dress (so far, picking it up on Tuesday) and what I'm thinking for my hair.
 |
| Yet again I designed my dress and got it custom made for me |
 | |||
| Hair, Maisie Williams is from a brilliant TV show (Game of Thrones) and I LOVE her hair! |
Much Love,
Sarah
Subscribe to:
Posts (Atom)