Wow, I guess today marks a month since I've been on Kalydeco. Wow. It does not seem like it has been that long! I am happy (and proud of myself) to say that I have not skipped even a single dose since I started! Yay! Lol. :)
I wished I had some new updates to post, but everything is about the same. There are only little things that I have noticed, but I can't be sure that it's not stemming from something besides the medicine.
I haven't exercised since the mile on the treadmill. I did something to my back and really hurt it! It hurt for almost 3 days straight. Then, I started to have pains in my left side- between my ribs and my hip. It hurts when I put pressure on the inside. Like when I squat down or bend over or things like that. It's not as bad today as it has been, though. It hurts when I move around at night, like to change sleeping positions. The night before last, I woke up in the middle of the night just drenched with sweat! I'm not sure what the deal was there, since I was in shorts and a tshirt and had my air conditioner on. But, I haven't done that again, so it was just a one time thing.
I have been feeling tired since... Wednesday I think. But- that is the day that I found for sure that I was able to graduate. I think that all the stress and tension I had about school just kind of went "whoooosh" and left. I think now I am tired from NOT stressing or worrying for once! I know it sounds crazy, but I honestly think that my body was used to being stressed out and now that I feel like a huge burden has been lifted, I am feeling just worn out! I feel like I could sleep for hours and hours on end!
The good news is that I am not really feeling CF bad. Which is something that I hardly ever say. Yes, I do have times where I am short of breath or am coughing, but my lungs don't feel bad. There are times when I just know that something is going on in my lungs that's not supposed to, and there are times that I feel great and then find out that something's not right. This being said, I have no idea how the doctor's appointment is going to go on Tuesday. I can see myself getting a great and awesome report and coming home for 3 months, but I can also see some unexpected infection pop up in there and need some "tuning up" for a couple of weeks. I don't know.
I am honestly nervous about how this appointment will go. More so than normal. Not because of the chance of a hospital stay, but because of the results of the PFTs and X-rays after a month on Kalydeco. I know that I feel different -better different- and I want so desperately for it to show on paper!! I just want to see some improvements! Oh, I want that so very badly... I guess we will just see. What happens, happens. Whatever will be, will be. That's become our motto.
So until Tuesday, I will be going ahead and preparing for a hospital stay, just in case. And I will update on Tuesday sometime after the visit to let you guys know what's going on...
Showing posts with label graduation. Show all posts
Showing posts with label graduation. Show all posts
Sunday, May 6, 2012
Friday, April 27, 2012
Day 21- feeling better...
Today started out kind of yucky- I was really sore from work all week and my body and mind were exhausted from stressing out! But despite all of that, I actually got up and exercised today. I was kind of surprised I did it, but I didn't have anything else to do and I didn't feel as bad as I had been so I just decided to do it. I walked on the treadmill for 18 minutes total. This was only a half a mile though because I was going at 1.5 for 15 minutes then 3 for 3 minutes. It may not seem like much to anyone else, but I was sweating, muscles burning, and lungs burning when I stopped.
My sputum was kind of streaked with red, but I wasn't really concerned as it was just barely noticeable. I felt dizzy right after I got through, but after about an hour I felt better than I had before. I've been coughing a lot more since I did it, but I think I am breaking some of that junk up! My body overall is feeling much much better since I started prednisone and asthma meds. I think those coupled with treatments and exercise will put me on the track of feeling good and gaining weight (muscle).
In fact, I weighed today and am at 70.4, so that means I have gained a pound in 3 weeks. Not bad when I don't gain ANYTHING or actually LOSE a pound or more within that time frame. Hopefully I can increase exercise workouts and stick to it so that my doctor's appointment on the 8th is GREAT!!! I'm looking forward to it, but am also anxious to see what the verdict will be on continuing or stopping this way of treatment. We will see.
Also- will you guys send some prayers up, good vibes/energy/juju, or good thoughts my way for this weekend? I am on the verge of not graduating because of a long hospital admission, and am waiting on word to see if I will get to. So... If it all works out the way I am praying it will, I will be a college graduate when I go see the doctor!!
*Fingers and toes crossed*
My sputum was kind of streaked with red, but I wasn't really concerned as it was just barely noticeable. I felt dizzy right after I got through, but after about an hour I felt better than I had before. I've been coughing a lot more since I did it, but I think I am breaking some of that junk up! My body overall is feeling much much better since I started prednisone and asthma meds. I think those coupled with treatments and exercise will put me on the track of feeling good and gaining weight (muscle).
In fact, I weighed today and am at 70.4, so that means I have gained a pound in 3 weeks. Not bad when I don't gain ANYTHING or actually LOSE a pound or more within that time frame. Hopefully I can increase exercise workouts and stick to it so that my doctor's appointment on the 8th is GREAT!!! I'm looking forward to it, but am also anxious to see what the verdict will be on continuing or stopping this way of treatment. We will see.
Also- will you guys send some prayers up, good vibes/energy/juju, or good thoughts my way for this weekend? I am on the verge of not graduating because of a long hospital admission, and am waiting on word to see if I will get to. So... If it all works out the way I am praying it will, I will be a college graduate when I go see the doctor!!
*Fingers and toes crossed*
Thursday, April 19, 2012
Treading water...
Ugh! I still haven't finished homework! It's so aggravating! The three week hospital stay put me so stinking far behind. I hate that I feel like I'm not going anywhere. It seems for every assignment that I finally finish, there are 3 more needing to be done. I've NEVER had this much trouble catching up. But this 3-week hospital stay took a lot out of me. It took me almost 3 more weeks to recover. Plus I'm catching colds and whatnots every other day it seems like.
It is really frustrating that one of the things I want most in life is right at my fingertips, but I'm treading water trying to reach it. If I don't get to graduate, I will be absolutely devastated. I have wanted to be done so many times before, but there's always that part that wants to keep going. And now that I've gotten to the end, I may not reach the goal. I may fall short of it. I don't know what I would do if that happens. I can't say that I would finish later, because of so many things that have happened. I want this so badly.
It seems unfair that there are some people who are healthy that go to college and blow off classes, party, or quit then start then quit then start, and still they seem to do fine. And yet here I am- and I can't even finish 2 classes worth of assignments. It is really frustrating to me. Very frustrating.
It really makes me jealous to know that some kids have no troubles at all getting through college. If only it could be that easy for me! But it's not. Just like every other single thing in my life. Always have to be difficult. Sigh. I wouldn't know how to live any other way....
It is really frustrating that one of the things I want most in life is right at my fingertips, but I'm treading water trying to reach it. If I don't get to graduate, I will be absolutely devastated. I have wanted to be done so many times before, but there's always that part that wants to keep going. And now that I've gotten to the end, I may not reach the goal. I may fall short of it. I don't know what I would do if that happens. I can't say that I would finish later, because of so many things that have happened. I want this so badly.
It seems unfair that there are some people who are healthy that go to college and blow off classes, party, or quit then start then quit then start, and still they seem to do fine. And yet here I am- and I can't even finish 2 classes worth of assignments. It is really frustrating to me. Very frustrating.
It really makes me jealous to know that some kids have no troubles at all getting through college. If only it could be that easy for me! But it's not. Just like every other single thing in my life. Always have to be difficult. Sigh. I wouldn't know how to live any other way....
Overwhelmed.
I'm feeling a little better this morning, and can say that I believe I'm on the uphill climb of getting better. I slept pretty good last night, although I do still feel sleepy this morning. As of right now (halfway through a treatment) I don't feel near as tight chested or wheezy as I have the past few days. I'm thinking that maybe I'm still tired because my immune system was fighting whatever was making me feel bad, and now it's recovering? Maybe? I don't know.
I was asked yesterday if I felt any different, and just how different. And I did not hesitate to say that I am breathing better. There is absolutely no doubt that I feel better in my lungs. Even if I go back to the doctor and there's no significant change in X-rays or PFTs, I KNOW that something is different. Period. No one can tell me anymore that Kalydeco won't make me feel better, because it 100% absolutely positively has. I am so thankful that I got to at least try it because I'm sure that it has changed me- even if it's just made me cough less strenuously. That alone was completely exhausting.
I am trying to finish my homework before graduation. If I don't get good grades, I won't get to graduate. And I'm afraid if I don't graduate now.... Well, I'm just afraid. I hate that because of CF, I had to take so much time off from school. I hate that! Now I am more than a month behind on assignments and they are due within the next week. It's so overwhelming. If I hadn't had to go in the hospital, I would be on track right now. It's stupid. I am working as hard right now as I can, going from one subject to the next, doing past lessons while trying to work on current ones, while also trying to finish my internship... It's frustrating and stressful to say the least. My poor little body is so stressed out! I am trying to get everything done, but it makes me so tired! My brain, my body, my everything. My muscles are sore from sitting at the computer and writing in notebooks. I'm just frustrated that this seems to happen right when I don't need it to. It really stinks that no matter how hard I seem to get to catch up, I'm still so far behind. It really does a number on my confidence.
Well since I can't actually write while doing my treatment, this post took up treatment time. Now that treatment time is done, I am going to back to work. Sigh. I so wished that I never would have had to go in the hospital again. I don't know hospital stays can't wait until nothing important is happening. But CF won't wait, and neither will graduation, so I'm off to get as much done today as I can. Sigh.
I was asked yesterday if I felt any different, and just how different. And I did not hesitate to say that I am breathing better. There is absolutely no doubt that I feel better in my lungs. Even if I go back to the doctor and there's no significant change in X-rays or PFTs, I KNOW that something is different. Period. No one can tell me anymore that Kalydeco won't make me feel better, because it 100% absolutely positively has. I am so thankful that I got to at least try it because I'm sure that it has changed me- even if it's just made me cough less strenuously. That alone was completely exhausting.
I am trying to finish my homework before graduation. If I don't get good grades, I won't get to graduate. And I'm afraid if I don't graduate now.... Well, I'm just afraid. I hate that because of CF, I had to take so much time off from school. I hate that! Now I am more than a month behind on assignments and they are due within the next week. It's so overwhelming. If I hadn't had to go in the hospital, I would be on track right now. It's stupid. I am working as hard right now as I can, going from one subject to the next, doing past lessons while trying to work on current ones, while also trying to finish my internship... It's frustrating and stressful to say the least. My poor little body is so stressed out! I am trying to get everything done, but it makes me so tired! My brain, my body, my everything. My muscles are sore from sitting at the computer and writing in notebooks. I'm just frustrated that this seems to happen right when I don't need it to. It really stinks that no matter how hard I seem to get to catch up, I'm still so far behind. It really does a number on my confidence.
Well since I can't actually write while doing my treatment, this post took up treatment time. Now that treatment time is done, I am going to back to work. Sigh. I so wished that I never would have had to go in the hospital again. I don't know hospital stays can't wait until nothing important is happening. But CF won't wait, and neither will graduation, so I'm off to get as much done today as I can. Sigh.
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