So , I haven't been on in a while. But yesterday I lost one of my best friends. We started talking the beginning of this month when he was sick, and became really close in that time. We clicked easily. We were going to hang out sometime soon and meet up....
I messaged him saying hey, and he said to text him he was going to lay down. I laughed and said text me tomorrow. Well the next day I went to his page and saw a RIP post..and texted him crying, telling him to tell me he was ok....his aunt texted back saying it wasn't a joke, that he was gone. I cried for hours , and I've had a migraine since. I kept trying to text him yesterday, and then I would remember. I miss him a lot, it's crazy. I hate this disease.
Breathe Easy Jesse <3
Thursday, May 31, 2012
Friday, May 11, 2012
Saturday, May 5, 2012
Ports
So, I had to get my port redone tonight. Well, the needle. They took the needle out and I had a shower (AHHH SOO AMAZING, you can't get the site wet at all, so it's reallyy hard to take a shower) and then they had to put another needle in. Usually, it doesn't hurt, but it had me in tears. I was in so much pain. They aren't sure why, but it doesn't usually hurt that bad. So it's finally done, and it's feeling better.
Ports are like miracle workers for CFers. Can be. I used to get PICCs a lot. A PICC is like an IV. But it's longer. Instead of a little length, it's a lot longer. It goes from my elbow to my heart basically. A med line isn't quite as long. More in-between.
A lot of us use PICCS, because an IV doesn't really work. The medicine we use is so strong, it can burn. It used to sting/burn me. But being put under for a PICC isn't really helpful. I either get put under, or they sedate me. I think they do either one, cause I remember getting anesthesia, or getting the medicine. When I get put under, they put a tube down my throat to help me breathe. Every medical show I have watched, when the patient stops breathing, they do that...yeah...I felt good when I realized that... (-.-) not. Anyways, when I wake up from being put under, I can't breathe. I feel worse. Everything kind of drains and gets stuck, and it is REALLY hard to breathe then. So I have to lay back down and wait for someone to come with a treatment before I sit up again. Also, the more they put you under, the harder it is to wake up they told me. So..PORT IT IS!
I have HORRIBLE veins. Like, I'm not kidding. It took an hour and a half to get an IV started. When they tried to just get blood..they couldn't. So that's when we decided to go for a port. It was very painful at first, but now I don't notice it. I have 2 scars, both are almost gone. One was like a bubble, its smaller now. The other was this long scar, it hurts if they put tape on it. But it's almost gone. It's still pink..a year later. But whatever.
When they say they have to draw blood for antibiotic test (to see how much is in your blood) they can't use the port. Because it is an access site, and it's where the antibiotic goes in. Kind of like...idk..testing a Dam for water..obviously you are going to find water....So they have to draw blood from somewhere else..I laugh. I tell them good luck and hand them my hand. It's the best spot. If you can't find a spot in my hand, you're screwed.
Ports are like miracle workers for CFers. Can be. I used to get PICCs a lot. A PICC is like an IV. But it's longer. Instead of a little length, it's a lot longer. It goes from my elbow to my heart basically. A med line isn't quite as long. More in-between.
A lot of us use PICCS, because an IV doesn't really work. The medicine we use is so strong, it can burn. It used to sting/burn me. But being put under for a PICC isn't really helpful. I either get put under, or they sedate me. I think they do either one, cause I remember getting anesthesia, or getting the medicine. When I get put under, they put a tube down my throat to help me breathe. Every medical show I have watched, when the patient stops breathing, they do that...yeah...I felt good when I realized that... (-.-) not. Anyways, when I wake up from being put under, I can't breathe. I feel worse. Everything kind of drains and gets stuck, and it is REALLY hard to breathe then. So I have to lay back down and wait for someone to come with a treatment before I sit up again. Also, the more they put you under, the harder it is to wake up they told me. So..PORT IT IS!
I have HORRIBLE veins. Like, I'm not kidding. It took an hour and a half to get an IV started. When they tried to just get blood..they couldn't. So that's when we decided to go for a port. It was very painful at first, but now I don't notice it. I have 2 scars, both are almost gone. One was like a bubble, its smaller now. The other was this long scar, it hurts if they put tape on it. But it's almost gone. It's still pink..a year later. But whatever.
When they say they have to draw blood for antibiotic test (to see how much is in your blood) they can't use the port. Because it is an access site, and it's where the antibiotic goes in. Kind of like...idk..testing a Dam for water..obviously you are going to find water....So they have to draw blood from somewhere else..I laugh. I tell them good luck and hand them my hand. It's the best spot. If you can't find a spot in my hand, you're screwed.
New layout
So , I changed my blog a little. I did like this one a lot. It almost reminds me of smoke, and it's purple. The smoke reminds me of my nebulizer, one of my treatments. I don't exactly like purple, but I like THIS purple colour. Purple is also the colour of CF. So, wear purple this month!! And Anyways, there will ONLY be 2 post on the main page. To look at the older post either scroll to the end and click "older post" or on the side it has the months and you click a month. So yeah, just so you know. I hope you like it, let me know what you think?
Thursday, May 3, 2012
Breathe Easy
We lost another one today. I went on facebook and saw someones status. I was hoping it wasn't her, but it was. I thought she was recovering, the last status I saw of hers she was doing fine, going home. I didn't see her other one saying she wasn't well. Her name is Melissa Tweedy. We are going to miss her a lot. So, that was a really bad part of my day. But I know she's watching over us, and she is breathing now.
BREATHE EASY MELISSA <3
Wednesday, May 2, 2012
Day 2
So I will be staying over the weekend, "try to get as healthy as possible, " as my mother put it. But I just got up about an hour ago. I didn't fall asleep until 6am, and every 5 minutes a doctor comes in. When I do sleep well, it's like NO one comes in. Seriously? And the doctors who came in this morning...ugh. So the dude comes in ten mins after I fell asleep, and he's like you will probably go home Thursday. I was like well Chicano, (my doc this week) said I might stay over the weekend to get the full 10 days. And he goes, well I think we are only doing 7. We don't want you to get resistant to the medication. AND then he goes, the normal run is 7-10 days. I was like yes..10 days(that's what I saidddd!).... He left and I started to laugh..seriously? Did he read my file? I have been on these meds almost every month. I know CFers who go for MONTHS at a time on these. I was like..wow.
SO THEN, the chick comes in. I fell asleep while she was talking yesterday. She talks so fast, I mean not faster then me, but fast. And a LOT.
I have this problem, when I am reallyy tired I won't remember who comes in, or what they say. So I only remember a little of the conversation. It was like, well you'll probably go home tomorrow, its 7 days on Wens . I said no , Thursday. She was like, no it's Wens. If I wasn't so tired, I would have counted on my fingers to explain. And she's a doctor? LOL. Right...nice try, play again.
So, Chicano comes in later. And he said I can do 7, or 10. And we agreed to try and get as much antibiotics as possible,and go for the ten. He did also say that if after the 7 days, if I wanted to go home, I could. Which was cool. I like him, he's pretty awesome. And his accent, he's from...Argentina? So, I love when he talks. He reminds me of my one Spanish teachers. All the nurses say he has an awesome accent also, and that when he answers the phone he goes "Ello, dis is Chicano," in his Spanish accent.
Anywayss, it's day 2 of the month. So , we need to spread the word out. I mean, not just this month. But there is probably a lot more going on for CF this month than any others.
I posted on fb last night for my friends and family to see if anyone wanted a link. And a lot of people do. It was really nice, it made me smile. I know my family is there for me always, and they want to read about this. A few CFers do too, and I have over 70 page views right now, and I haven't even sent the link to anyone in my family but one person. And I know she reads it(: To follow the blog, I think you need to use your email and click somewhere that says "follow"..or subscribe? I really don't know. I am following two other blogs, and I have no idea how I did that....so I can look up directions on Google and post them if anyone wants. I have a CF mom who read my blog last night, she said it helps her know a little more about what her son goes through. He's 12.
So, yeah...OH WAIT. The documentary is going to be on at 9pm, May 3! Please watch! I am going to get the DVD (hospital channels don't have it, but I am asking around if any rooms do have it somewhere in this place) so, let me know what you think of it!
CF MONTH
So, its May, aka CF awareness month. I'm in the hospital, since last Thursday. I am doing better, had some of the best lung function scores in YEARS! I feel amazing,I can breathe! I'm just really really really tired.
So there is a movie on Thursday you all should watch. It's called 65RedRoses. It's on the Oprah Winfrey Network at 9pm I think? I will check and post tomorrow the exact time. So anyways, I should be out after the weekend I think.
They say if you were to take a straw and breathe in it, that's what it feels like.To have CF.
But it isn't just that. There's emotional pain, mental pain. Knowing that this will probably kill you, that you can't be normal. I watch my sisters everyday. They get up and eat , go hang out with friends, complain about a headache, last minute sleepovers , planning vacations. All without a care in the world.
I miss school, a lot. I HATE missing school. But I have a terminal illness that makes me sick, every second of the day. I don't think people understand that sometimes. Like my mom, I love her to death. She has been there everyday for me, every moment I need her. But sometimes, she doesn't understand. I know she has had cancer, so she knows what it's like to be sick. But also, she recovered. Went into remission. I can't. I know she understands all she can. She knows being sick, and she is there EVERY second I need her. I went through a really hard time last year, and she stayed with me every moment I was in the hospital, for 2 weeks. And I can't ask for a better mother. I have friends who say that basically, their parents don't care. And I know mine does! It's just, there is no way she can possibly understand sometimes. I know that, but she does try as much as she can, and helps me with anything I need.I can't ask for anything more then for her to try, because I know that she goes through stuff I can't understand, as much as I want to. I love her more than anything <3.
I go to school sick a lot. I cough during my exams, I cough during gym when I used to have it. And I throw up in the bathroom, but stay for my next class for the hundred question test. Sometimes I'm just too sick. I don't want to face the stares, and looks, in school. So I stay home. It sucks when people stare at you during a test, and you can't stop coughing. So I do miss school a lot, I wish I didn't. Sometimes, you are just too sick. But, I have amazing grades. I study a LOT, I do my work, I work really hard. I have A's and B's. I've only failed one class, and it's because I have other more important classes. Being in the hospital almost EVERY month but 2 since the school year started, I think I am doing pretty well considering I teach myself two weeks worth of work every time I go in the hospital.
I think it's the emotional and mental pain that hurt the worst. I have many friends of mine who agree with me. You get to the point you just give up sometimes. It takes a lot to wake up every morning, facing the day. You know what's ahead of you sometimes, not all the time though. You might get sick suddenly. And knowing you have so much to do to stay healthy for one day, it's very hard.
I know I will never be normal, at least not until there is a cure. And maybe not then either.
You complain about: headaches, colds, stomach aches
We complain about: everyday migraines, colds that land us in the hospital, stomach aches and horrible cramps if we miss a pill and eat something.
It's not like we are saying your problems aren't important, because they are. But this kills us. Literally. It is THE number one genetic killer. I have friends who have died, and I miss them. You ask people if they know what CF is, and they say, no. You ask them what cancer is, and they know exactly. But you CAN recover from cancer, go into remission. You might die, but you can put up a good fight. I have a friend going through cancer right now, and it hurts to watch her and not be able to do anything about it. So, we need a cure for that, too. But I know she will beat it, she's a strong woman. <3 And with CF, you are going to die. And I don't know any CF people who DID NOT die from CF. There is no "remission" , there's just a "I can actually breathe a little today."
So there is a movie on Thursday you all should watch. It's called 65RedRoses. It's on the Oprah Winfrey Network at 9pm I think? I will check and post tomorrow the exact time. So anyways, I should be out after the weekend I think.
They say if you were to take a straw and breathe in it, that's what it feels like.To have CF.
But it isn't just that. There's emotional pain, mental pain. Knowing that this will probably kill you, that you can't be normal. I watch my sisters everyday. They get up and eat , go hang out with friends, complain about a headache, last minute sleepovers , planning vacations. All without a care in the world.
I miss school, a lot. I HATE missing school. But I have a terminal illness that makes me sick, every second of the day. I don't think people understand that sometimes. Like my mom, I love her to death. She has been there everyday for me, every moment I need her. But sometimes, she doesn't understand. I know she has had cancer, so she knows what it's like to be sick. But also, she recovered. Went into remission. I can't. I know she understands all she can. She knows being sick, and she is there EVERY second I need her. I went through a really hard time last year, and she stayed with me every moment I was in the hospital, for 2 weeks. And I can't ask for a better mother. I have friends who say that basically, their parents don't care. And I know mine does! It's just, there is no way she can possibly understand sometimes. I know that, but she does try as much as she can, and helps me with anything I need.I can't ask for anything more then for her to try, because I know that she goes through stuff I can't understand, as much as I want to. I love her more than anything <3.
I go to school sick a lot. I cough during my exams, I cough during gym when I used to have it. And I throw up in the bathroom, but stay for my next class for the hundred question test. Sometimes I'm just too sick. I don't want to face the stares, and looks, in school. So I stay home. It sucks when people stare at you during a test, and you can't stop coughing. So I do miss school a lot, I wish I didn't. Sometimes, you are just too sick. But, I have amazing grades. I study a LOT, I do my work, I work really hard. I have A's and B's. I've only failed one class, and it's because I have other more important classes. Being in the hospital almost EVERY month but 2 since the school year started, I think I am doing pretty well considering I teach myself two weeks worth of work every time I go in the hospital.
I think it's the emotional and mental pain that hurt the worst. I have many friends of mine who agree with me. You get to the point you just give up sometimes. It takes a lot to wake up every morning, facing the day. You know what's ahead of you sometimes, not all the time though. You might get sick suddenly. And knowing you have so much to do to stay healthy for one day, it's very hard.
I know I will never be normal, at least not until there is a cure. And maybe not then either.
You complain about: headaches, colds, stomach aches
We complain about: everyday migraines, colds that land us in the hospital, stomach aches and horrible cramps if we miss a pill and eat something.
It's not like we are saying your problems aren't important, because they are. But this kills us. Literally. It is THE number one genetic killer. I have friends who have died, and I miss them. You ask people if they know what CF is, and they say, no. You ask them what cancer is, and they know exactly. But you CAN recover from cancer, go into remission. You might die, but you can put up a good fight. I have a friend going through cancer right now, and it hurts to watch her and not be able to do anything about it. So, we need a cure for that, too. But I know she will beat it, she's a strong woman. <3 And with CF, you are going to die. And I don't know any CF people who DID NOT die from CF. There is no "remission" , there's just a "I can actually breathe a little today."
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