Hey y'all!
I have not been feeling all that great lately again unfortunately. I can't catch my breath and my pulse ox is running 88-91. So to make things simple....I just want to lay in bed all day and sleep. That seems to be the number one thing that people without CF do not understand. They do not understand that we are not being lazy. We simply need days to catch our breath. Even my friends do not understand. They say I need to get out more and get up and do something and to stop being lazy. Even if I explain that I do not feel good, they seem to think that getting up and doing something will magically make me better. In other words....they just think I'm being lazy. It is really aggravating. Especially since they do not understand. This is coming from people who stop their whole lives for a cold. So this is a note to those people who think I'm lazy:
Dear people who just think I'm being lazy,
Please do not pretend to understand how I feel and then criticize me. Sometimes I do not feel good. Sometimes my oxygen is low. Sometimes I'm so sleepy that I cannot get out of bed. Sometimes I cannot breathe and have cough attacks that leave me gasping for air. I am not being lazy. I am not "pulling the sick card." I am sick. Sorry that you do not understand that. Unfortunately I barely have good days. I do not bother you when you lay in bed for days because you have a cold or when you complain loudly when you cannot stop coughing from the cold. Why must you bother me about what I do? Just leave me be, let me have my sick days, my "lazy" days. I do the best I can. I can promise you there are days when I feel like absolute crap but I am still out there going to class, walking tons, cleaning, making dinner, babysitting, all without complaining. You have no idea what it feels like to have to stop and rest after walking for a couple minutes because you're out of breath. You focus on you and I will focus on me.
Love,
Chelsea
Showing posts with label coughing. Show all posts
Showing posts with label coughing. Show all posts
Saturday, August 16, 2014
Thursday, April 24, 2014
Coughing up blood vs. breathing
Hey y'all! I have not been feeling well lately. For the past two weeks I have been coughing up tons of blood. Pure blood with no mucus. By tons, I mean I have been filling up the bottom of a bathroom sink with it. It only happens when I lay down to go to bed. I start feeling a bubbly feeling, almost like a wheeze that is when I know the blood is coming. Then I have to cough and up it comes. I coughed up so much the other day that I could not stop and was actually choking on the blood. It was gross.
SO... my doctor decided that it might be from the Colistin I started, so she took me off of it for a week to see if that helps. She also had me stopped hypertonic saline at night to see if that helps as well.
I went to the doctor Tuesday and it is now Thursday...so after only two nights of not doing Colistin or hypertonic, my lungs are not happy. I can barely breathe. My chest is tight and hurting. I cannot imagine a whole week of this.. To be fair though, the coughing up blood did stop. I almost think I would rather just cough up blood than feel like this. Funny how that is.
If I had continued to cough up blood, my doctor wanted to possibly do a CT scan and a bronch but so far...no blood! I also had an x-ray done.
In other news, my doctor wants my decision about which transplant facility I want to use so they can set up a meeting for me to just talk with them!
SO... my doctor decided that it might be from the Colistin I started, so she took me off of it for a week to see if that helps. She also had me stopped hypertonic saline at night to see if that helps as well.
I went to the doctor Tuesday and it is now Thursday...so after only two nights of not doing Colistin or hypertonic, my lungs are not happy. I can barely breathe. My chest is tight and hurting. I cannot imagine a whole week of this.. To be fair though, the coughing up blood did stop. I almost think I would rather just cough up blood than feel like this. Funny how that is.
If I had continued to cough up blood, my doctor wanted to possibly do a CT scan and a bronch but so far...no blood! I also had an x-ray done.
In other news, my doctor wants my decision about which transplant facility I want to use so they can set up a meeting for me to just talk with them!
Thursday, February 20, 2014
Blessing in Disguise
When people find out I have Cystic Fibrosis, they usually respond with sympathy and pity. Oh how I hate pity! Some ask if I have ever thought about what it would be like to be normal. What is normal? My CF and my diabetes and everything else are my normal. My normal is a day filled with medications, shots, and treatments. My normal is hacking up a lung and gasping for breath. My normal is visiting doctors and spending weeks in the hospital. My normal is coughing up blood (this really scares a lot of people). I honestly could not imagine a different normal. Like what would that even be like? I would not wish for a day without my CF and other problems. What is the point in that? A day of "normalcy" would only be a tease. A life I would never have access to. Seems like torture to me. I have CF, it will not go away. People always seem to feel bad for me but I alway wonder why because I have never once felt bad for myself. Even though my life may be cut short from these problems, I live more than most people! I do not take for granted the time I have. I love more deeply and laugh more loudly than I would if I thought I had all the time in the world.
I feel normal. I do what "normal" college kids do. I have friends. I go to parties. I go out on dates. I have fun. I spend too much money. I choose fun over class sometimes. I have a life. One thing I refuse to participate in is smoking though, anything at all.
If I did not have my CF and other medical problems, I would not cough everyday (seriously, it blows my mind that some people do not cough even once a day...seriously BLOWS MY MIND!) I would not spend forever doing treatments and taking medications. I would not constantly be pricking my fingers or giving myself shots. I would be taller and be, let's be honest, probably as big as a house the way I eat. I would be terrified of needles and hospitals. I would not have an expiration date stamped across my forehead. If I did not have CF, I would not be the person I am today. Make no mistake, CF does not define me, but it has shaped me.
CF has made me appreciate more. I call it a blessing in disguise. I always wonder "would I value these things as much if I did not have CF?" and "would I be this awesome if I didn't have CF?" I'd like to think I would. CF makes me value my education (even though it seems to be taking forever to get that bachelor's degree!). It drives me to keep going and to be successful. It allowed me to obtain a part in a TV show (I wanted to be an actress. It was my wish. The show went off the air a couple months after my on air performance.). It makes me love and trust more than I probably should. It helps me to jump over life's hurdles. It makes me value the time I have with my family and friends. It makes me hold them closer to my heart. It makes me more eager to be outgoing and to treat everyone with kindness because every person I meet is fighting a battle I cannot see. It allows me to make a difference and to educate others about CF so maybe one day it will stand for cure found. It tries to help me not sweat the small stuff (but I stress easily). It forces me to look at the bigger picture, but to also appreciate the little snapshots.
Everyone dies sooner or later. I just do what I need to do to live as long as I can while living my life to the fullest extent.
I feel normal. I do what "normal" college kids do. I have friends. I go to parties. I go out on dates. I have fun. I spend too much money. I choose fun over class sometimes. I have a life. One thing I refuse to participate in is smoking though, anything at all.
If I did not have my CF and other medical problems, I would not cough everyday (seriously, it blows my mind that some people do not cough even once a day...seriously BLOWS MY MIND!) I would not spend forever doing treatments and taking medications. I would not constantly be pricking my fingers or giving myself shots. I would be taller and be, let's be honest, probably as big as a house the way I eat. I would be terrified of needles and hospitals. I would not have an expiration date stamped across my forehead. If I did not have CF, I would not be the person I am today. Make no mistake, CF does not define me, but it has shaped me.
CF has made me appreciate more. I call it a blessing in disguise. I always wonder "would I value these things as much if I did not have CF?" and "would I be this awesome if I didn't have CF?" I'd like to think I would. CF makes me value my education (even though it seems to be taking forever to get that bachelor's degree!). It drives me to keep going and to be successful. It allowed me to obtain a part in a TV show (I wanted to be an actress. It was my wish. The show went off the air a couple months after my on air performance.). It makes me love and trust more than I probably should. It helps me to jump over life's hurdles. It makes me value the time I have with my family and friends. It makes me hold them closer to my heart. It makes me more eager to be outgoing and to treat everyone with kindness because every person I meet is fighting a battle I cannot see. It allows me to make a difference and to educate others about CF so maybe one day it will stand for cure found. It tries to help me not sweat the small stuff (but I stress easily). It forces me to look at the bigger picture, but to also appreciate the little snapshots.
Everyone dies sooner or later. I just do what I need to do to live as long as I can while living my life to the fullest extent.
Monday, February 10, 2014
Well I do declare!
Hey y'all! Good gracious it has been awhile! I've been a busy bee lately. I have been taking my time off of school to do things I'm passionate about: baking and painting canvases!
I have also been running up and down the roads to various doctor's appointments. I had to get my eyes checked for diabetes damage (where the nurse that saw had just came back to work that day after having the flu and all her children had it). She was still sneezing and sniffling all over the place. I also had to see endocrinology where I now have to take a shot every time I eat along with a shot at night. I also have to check my blood sugars four times a day. I feel like a human pin cushion. My fingers are all bruised as well as my stomach from all the poking! But now that my blood sugar is under control I am hoping to maybe gain some weight! I still feel awful so that sucks but I'm not ready to be back on IVs again so suffer I shall.
For all those who have not seen Foreverland and 65_RedRoses, I highly recommend both! They are really good. I must admit I teared up at both of them. They need to make a really great, really popular movie about CF. I think it would give CF more publicity and therefore we would be as well known as cancer. We need to be more proactive at fundraising. I wish CF was as well known as say breast cancer.
Another thing I want to touch on is how CFers can make other CFers feel bad without even knowing. Like for instance I know some CFers who are like "there's no excuse not to get out and do something everyday" "I work out everyday no matter how sick I am" "I eat so healthy and now I don't have to take any medications." Sorry y'all but shut up. Some CFers can get offended. Sometimes it's a struggle to pull yourself out of bed. Hell, sometimes it's a struggle just to breathe. Some people just cannot get up and work out everyday. So saying there's no excuse makes them feel like there is something wrong with them and that they are lazy. Also some people do not have as severe cases of CF. If you don't have to do treatments or take enzymes or have diabetes too, good for you. You are blessed. Not others are as blessed. As CFers we should embrace other CFers because who knows better what they have to go through. I found a quote recently that I really love. It goes:
"You are not obligated to do everything a healthy person does. You are not obligated to be an inspiration. You are not obligated to hide your illness in order to make other people comfortable. You are allowed to know your limits. You are allowed to have bad days. You are allowed to stay in bed if you can’t get up to do anything but go to the bathroom. It is not your fault if other people leave you because of your illness. It is not your fault that you are sick. You don’t have to apologize for something that is out of your control." -unknown
I really do love this.
I have also been running up and down the roads to various doctor's appointments. I had to get my eyes checked for diabetes damage (where the nurse that saw had just came back to work that day after having the flu and all her children had it). She was still sneezing and sniffling all over the place. I also had to see endocrinology where I now have to take a shot every time I eat along with a shot at night. I also have to check my blood sugars four times a day. I feel like a human pin cushion. My fingers are all bruised as well as my stomach from all the poking! But now that my blood sugar is under control I am hoping to maybe gain some weight! I still feel awful so that sucks but I'm not ready to be back on IVs again so suffer I shall.
For all those who have not seen Foreverland and 65_RedRoses, I highly recommend both! They are really good. I must admit I teared up at both of them. They need to make a really great, really popular movie about CF. I think it would give CF more publicity and therefore we would be as well known as cancer. We need to be more proactive at fundraising. I wish CF was as well known as say breast cancer.
Another thing I want to touch on is how CFers can make other CFers feel bad without even knowing. Like for instance I know some CFers who are like "there's no excuse not to get out and do something everyday" "I work out everyday no matter how sick I am" "I eat so healthy and now I don't have to take any medications." Sorry y'all but shut up. Some CFers can get offended. Sometimes it's a struggle to pull yourself out of bed. Hell, sometimes it's a struggle just to breathe. Some people just cannot get up and work out everyday. So saying there's no excuse makes them feel like there is something wrong with them and that they are lazy. Also some people do not have as severe cases of CF. If you don't have to do treatments or take enzymes or have diabetes too, good for you. You are blessed. Not others are as blessed. As CFers we should embrace other CFers because who knows better what they have to go through. I found a quote recently that I really love. It goes:
"You are not obligated to do everything a healthy person does. You are not obligated to be an inspiration. You are not obligated to hide your illness in order to make other people comfortable. You are allowed to know your limits. You are allowed to have bad days. You are allowed to stay in bed if you can’t get up to do anything but go to the bathroom. It is not your fault if other people leave you because of your illness. It is not your fault that you are sick. You don’t have to apologize for something that is out of your control." -unknown
I really do love this.
Wednesday, January 29, 2014
Snow day in SC
Hey y'all! Now I know all you northerners are laughing your heads off at us southern folk, but we are not used to this weather! Now we only got a few inches, like 2 or 3, but that was enough to shut down all the schools and businesses in my area. Schools even got out early yesterday before anything happened at all, just in case. We had a wonderful snow day today filled with sledding and warm chicken soup. Schools in the area are delayed tomorrow but still in session, much to the dismay of my little sister.
But as the snow day ends my chest is now hurting a bunch, especially when I cough. My cough is never ending. But according to my doctor's appointment Monday, my pfts were up higher than they have been in a long while. So that's good! But what is not good is I still feel awful and my doctor is at a loss at what to do. My pfts never seem to stay up anymore. It is almost as if I can feel them dropping with every breath I take.
Monday, October 15, 2012
Decisions, Decisions
My internal debate about my future career is raging once again. By the end of my spring semester I have to officially declare my major and start in on those career specific classes. When I went into college I knew exactly what I wanted to be: a kindergarten teacher. After a horrible education related class I had my doubts. So after that so many options bounced around in my mind. I'm currently majoring in nursing, but I transferred and lost a lot of credits so I'm pretty far behind. I thought I would enjoy being a school nurse but one night after watching my little sister wiggle her not so loose tooth so violently that it came out along with tons of blood, I changed my mind. Now I know what most of you are thinking: I have CF so it seems like I should be used to the blood and nasty things that go along with the medical field. I am, but seeing my blood or watching somebody give me an IV or even a PICC procedure is different. I'm totally comfortable with it. I'm not so sure I'd be as comfortable doing it to someone else. Plus as much as I go into the hospital the medical field should be the last thing I want to work in.
Anyway back to my career battle. So then I thought about how I love to bake, I really do love it. I wanted to go to culinary school for baking and pastry. Every time I think of a career my dad usually tells me how that career might not be a good fit for me with my CF. For instance, being around sick kids, being around sick patients, and coughing constantly around food. I get his point, my lung functions definitely are not very good for my young age of 19 years old. I was around the 50s in May. I have not been able to go back to the doctor's yet because I lost health insurance once I turned 19. Still its discouraging to say the least. I have no idea what to do. What if all I want to do in life is get married and then be a stay at home mom? Is that really so bad? I cannot honestly think of any degree that I would love to have. Should I finish my early childhood degree. Should I go to culinary school? Should I just jump right in and try to start my bakery? I know I want degree whether I use it or not. Decisions, decisions.
Anyway back to my career battle. So then I thought about how I love to bake, I really do love it. I wanted to go to culinary school for baking and pastry. Every time I think of a career my dad usually tells me how that career might not be a good fit for me with my CF. For instance, being around sick kids, being around sick patients, and coughing constantly around food. I get his point, my lung functions definitely are not very good for my young age of 19 years old. I was around the 50s in May. I have not been able to go back to the doctor's yet because I lost health insurance once I turned 19. Still its discouraging to say the least. I have no idea what to do. What if all I want to do in life is get married and then be a stay at home mom? Is that really so bad? I cannot honestly think of any degree that I would love to have. Should I finish my early childhood degree. Should I go to culinary school? Should I just jump right in and try to start my bakery? I know I want degree whether I use it or not. Decisions, decisions.
Subscribe to:
Posts (Atom)