I have one super specific example- So my roommates signed up for the MS walk...great, grand, it will be a blast! Anyways, a few hours after we sign up on of my suitemates...we will call her Vitamin D girl. She decided to make her status on Facebook:
Vitamin D girl is doing the MS walk in May -- follow the link to sponsor me if you want!
then some people commented and said they would sponsor her...great, grand, super amazing...then I saw this after one girl had commented how her mom has MS...
Vitamin D girl said My suitemate (and our team captain) was diagnosed in October so my suite decided to form a team this year and do the walk!
ok. so at my school about I dont know, a few people know, my professors know that I have it but whatever...I choose who to tell because I have that right. Well Vitamin D girl has 389 friends at my school. my school is small, that's my whole class plus some...so ok if anyone reads their news feed...they know. So the whole time I was doing a presentation today I sat at wondered who actually knows, who figured it out...all they had to do was follow the link and see my name as the team captain...thanks again Vitamin D girl, I really, really appreciate it and because of that I have no problem eating all the chocolate truffles you left out, even if they are the super expensive ones, I left you all of you favorites...well the exact opposite of your favorites...the vanilla ones..
if you haven't gotten how people make me angry and frustrated, don't worry, i have a second example for you:
So my mother wanted me and basically forced me to register my roommates and myself for the MS walk. I did so and her reason behind it was so that my relatives could donate to our team. OK fair enough, exciting and cool! However, after I made my team I was talking to my mother last night. I was looking for some of the addresses that I was missing as I never really keep up with who has what email. She then let me know that she had already sent out a email to all my relatives and everyone had already made donations...but to her team! Oh, then why the hell do I make a team...so that my mom can ask for money in my name...peachy. If I was one of my relatives I would be kinda curious as to why the girl who actually has MS...isnt participating...and I would probably wonder if she really cared or not. That's probably why no one ever talks about it in my family, because my mom fills them in on everything--I am in fact a dumb college girl who I guess has no idea what is going on with her own life.
I am walking in this walk for a few reasons, I am walking so that no one else has to hear the words- You have MS...those words sucked as I was so wonderfully told in a ER of a hospital by myself. I am walking with my roommate because when I called her after my parents left me in the ER for the night before I was diagnosed, she rushed over and caught the tail end of the conversation the neurologist was having with me which ended with-- You have MS. She saw it first hand, she was their and she knows. We are doing this thing together because she is one of the two people I have let in. She is one of the three people who know what I think, what I worry about and all the inbetweens. I am not walking this to have more drama piled on me by my other two suitemates. I love them for joining, but I cant stand when they do it because they "have been affected deeply by their roommate." That is bull, we dont talk about it ever, they know that I go get treatments once a month, but they never ask about it...we dont talk MS. The only MS talks that I have are with my roommate or on this computer.
Ok and now for some positives...well two positives:
The first- our MS team has raised $265dollars so far
My mom sent me a email and I guess my old PT guy wants to sponsor me in the walk. He truly rocks. He has seen me recover from 3 surgeries, a hip injury and he was the one who rehabed me for a month after my November attack. When ever he sees my name on the "new" patient list he calls immediately to see what is up and to see what he can do. When he found out that I had MS he was speechless...he had called after he saw I was going to be coming back in to do some rehabbing...when my mom told him on the phone that it was for MS, he was literally speechless. He offered to do whatever and it was so cute. ( only I could see this as cute, I am weird or something). When I started PT for to work on everything in December he was amazing, he stood by my side and did whatever it took to motivate me into getting better. I actually looked forward to going to PT. He saw me recover, he saw my walking and speech get better and I remember one day in which he said how well my speech improved and how amazing I was doing...that meant more than anything and made my day, week and month.
I think its people like this that make you push forward and see the positives in life. I think that because he is in his late 20's and I have know him for years I can just talk to him so much easier. Even if it is about MS I could always throw out questions or problems and he was willing to help me solve things and look for answers. I wouldn't had been able to pick a treatment without him...He just simplifies my thoughts sometimes even when I just want to sit there and cry. I am amazed that I could open up to him and I am glad he has been there to listen and that he cares enough to sponsor me in this walk.
and there you have it, the things that had frustrated me and made me angry, and the positives of my day.