Tuesday, March 1, 2011
well well .. ive been on IV vancomycin and aztreonam for almost a two full weeks now, and have had no improvement whatsoever. i am bringing up more mucus then before i went on IV i think..and i am really worried. So yesterday, we called the clinic and they switched me from aztreonam to merrem..which is what i was on in december with the vanco and that seemed to work pretty fast. im hoping and praying that the problem was the aztreonam wasnt doing the job for some reason, and now ill get better switching over to merrem. I feel SO SHITTY right now, i cant even go into a store without having a horrific coughing fit where people are like staring and running, and me having to walk out of the store and go to the car while my mom and sisters finish up in there. My health has gotten so bad i wont go anywhere by myself or drive by myself anymore because im seriously scared. I make my mom come with me basically anywhere i need to go. She is my rock, and is the most wonderful woman in the world. If it wasn't for her i dont know where i would be today, probably dead. I sound so congested right now, and like i could cough up 10 pounds of mucus and still have more. Of course the downside of all this is that last time i was on the merrem, it made me so friggen nauteous it was almost unbearable. I started my first dose last night, and it wasnt unbearable, but it definnietly is not pleasant. Being nauteous is one of the worst feelings in the world, i would rather vomit then be nauteous anyday. It feels like there is an elephant sitting on top of my chest and wont get off. I have been having horrible chest pains still and they hurt like a bitch. I am so physically mentally and emotionally drained. Ive had to take anxiety medicine almost every day for the past couple days. I get so sad, so easily..just living this life where im basically incapable of doing anything for myself and laying in bed all day because im so sick is really getting me down. I WANT TO BE BETTTER ALREADY! for a little while at least,, please? thats the worst part about CF is that we can get better all we want, be we all know its just temporary..only a matter of time til were back on IVs, the same condition as we were weeks or months before, even worse. ugh, im sorry but i just think its a horrible way of life. i would love to know what its like to wake up and not worry about struggling to breathe. i just HOPE this medicine works!
Saturday, February 26, 2011
So its 8 in the morning, and i have gotten MAYBE about two hours of sleep. I had a coughing fit at about 3:15 and havent really been able to stop since. And everytime i try to lay down, it just gets worse.. so i figured id just ramble on on here. I'm on week two of Vancomycin & Aztreonam IV's, and still - have a horrible horrible cough..its really scaring the shit out of me. Last time i was on Vanco in december it worked wonders for me, my cough was cleared up in a matter of days.. im not really quite sure whats going on, but its a little unsettlling. Im absolutely terrified of the day when IV medicine wont work for me the way that they used to, and i think that day might have came. Im just so scared of getting any worse than i already am honestly. Isnt everybody. I would love to know what its like to wake up just ONE day and be able to take a HUGE DEEP breath. Or sleep through an entire night, without waking up and choking. My coughing fits have been so bad lately. to the point where my chest and lungs hurt so bad, and painkillers dont even do anything. Theres a nasty amount of thick ass green gross mucus that im drowning in and i just want to be better. I have successfully been sick this ENTIRE winter, im so ready for spring. My whole body aches so bad right now its the worst feeling in the world..i dont think theres a part on me that doesnt hurt. I try so hard to look on the bright side of everything, but lately its been so hard. Well i have to start my morning dose of IVs in about an hour so im gonnna try to rest a littl even though i doubt it will happen. I will probably write later on tonight.
Tuesday, February 22, 2011
It's just one of those days.. when you just are feeling really down about everything and anything that comes along your way. I guess the fact that my doctor added prednisone for me to take along with the IV's and other 5 million medications im already on. Prednisone and me are not a good combo, it fucks with my moods and emotions so bad. I had already been feeling really sad lately, and that just put the topper on it. I was crying quite a bit today actually. Sometimes everything compiled on top of eachother is just way too much. And alot of the time, i cry because i'm frusterated. Frusterated that i can't take a 5 minute walk, frusterated that i can't do alot of the physical stuff i used to be able to. Frusterated that im constantly exhausted because im up all night, gagging and coughing on my own mucus. It's 5:18 right now and i just got into one of my coughing fits that sometimes last 3 or 4 hours .. i dont understand why im not getting better, its really really concerning and scaring me. Hopefully the prednisone will help a little bit with the cough and wheezing ive been having but the IVs really need to start kicking in and doing their usual job. When i cry, it's never because i feel sorry for myself because trust me, I don't. I do believe that i was given CF for one reason or another and i need to take it as a blessing and not a curse. It's just that it gets me down that i am going to be fighting this continuous painful battle from now until i am done on this earth. Fighting for every breath i take, taking medicines that make me sick, going on IVs, getting better for a little while .. just to fall back off the track and have to do the same thing ALLLL over again a couple months later. THAT is what really gets me down, its kinda like theres no light at the end of the tunnel, theres nothing to look forward to, getting better for us CFers is only a temporary type of thing, we will never be better. Its a horrible, progressive illness. Dont get me wrong, there is always transplant, but that isn't always a bed of roses either .. it could work out absolutely GREAT and could give us the breath and life we always wanted, and it could equally go the other way. I guess all i can do is BELIEVE in my heart that there will be a cure before i reach that point. :/ ughh
Sunday, February 20, 2011
Its 4;13 in the morning, and im laying here, not being able to sleep because i cannot catch my breath for shit, i havent stopped coughing for literally like 4 hours and it feels like my organs are all failing because it hurts so bad. i hate feeling this way, i really do. some days i really feel as if i cant handle it anymore. im waiting patiently for these iv meds to start clearing it up, i dont understand why i feel like im getting worse. i miss being able to go out and do things. i cant even walk around for like 2 minutes without getting winded or feeling like im gonna keel over. im prayinggg that after these rounds of IVs, that i will feel better and then be able to start exercising and working harder to keep myself healthier. i never exercise because i dont even have the energy to walk 5 feet, let alone get on a treadmill or something..but hopefully things can change and i am willing to bust my ass to start strengthening my body, i am so weak its not even funny. i also hope i can gain some freakin weight..i havent gone shopping for myself in so long and i hate going out in public because i feel like i look SO disgusting, like skeletor. i hate that my bones stick out and my legs look like toothpicks. ugh its so gross. i used to be a healthy weight and i was comfortable with myself. ever since i started losing so much weight, i hate myself. well the way i look at least. well im gonna attempt to lay down my eyes are burning, even though i know i wont be able to sleep choking like this. :( .. just hoping things will get better soon.