After learning about the loss of my sister's best friend, the week continued to just be a rough one.
With all the craziness that is the quickly approaching wedding, things just keep going wrong.
Kyle had his qualifying exam on Tuesday, which was the morning I was a blubbering mess- so much for being a supportive wifey! Sorry honey. Wednesday was a long day of work, and then Thursday my car decided it was the perfect time to break. A few check engine lights and over 500 dollars later, my car is now fixed but it was just insult to injury.
Then later today we learned Kyle did not pass his qualifying exams. The ones he studied every waking second of every day over the entire summer... yea those... he didn't pass. He gets one more try to retake them. In January.
It's going to be a long semester.
Even I feel defeated.
Life, eh?
Friday, August 31, 2012
Tuesday, August 28, 2012
Elegance of forever
“When someone that you love dies..it's like fireworks suddenly burning out in the sky and everything going black.” - Muriel Barbery, The Elegance of the Hedgehog
And suddenly, all that's left is the spectacular show you can only call upon in your mind. Smoky shadows linger, merely the dust the fireworks left behind, and if you stand too close the smog will fill your lungs, and burn your eyes.
Yet, somehow you need this forever darkness to truly appreciate the beauty and light that you were able to see.
Death walks a fine line of letting go and holding on. Holding onto the visions engrained into your mind, like the lingering imagine of fireworks behind your eyelids; all the while, gingerly balancing the courage to know in your heart, that no matter how beautiful the show was, it's over. We will move on, and we will see more fireworks. We will continue to live, but we shall never forget.
"...maybe that's what life is about: there's a lot of despair, but also the odd moment of beauty, where time is no longer the same...[like] something suspended, and elsewhere...an always within a never. Yes, that's it, an always within a never." - Muriel Barbery, The Elegance of the Hedgehog
You're life was spectacularly beautiful. You will be missed by many. Breathe easy lovely lady, breathe easy always.
Monday, August 13, 2012
Day:Night as Depression:_______
Mania.
Continuing my alarmingly bi-polar emotions.. I have some pretty awesome news! My kalydeco was finally approved. My mom, being a mom, called up the insurance company with my step-aunt (who used to work for said insurance company) and they proceeded to huff and puff and blow the house down. Or something to that effect. All I know, is the company called my clinic, said they would work something out, and then...BAM, a few days later they said they would approve my usage until 2017. That's 5 years people. I'll be 28 when this deal expires.
I am, thankfully, feeling a ton better. I started a 3 week course of some wonderful MRSA killing agents. My obnoxious moodiness is gone, phew, but stress is still here. For example, we are still counting down the days till Kyle takes his PhD qualifying exams for which he is doing nothing but studying, eating, feeling sick, not sleeping, and my favorite of all continually whimpering that he has to do this big exam. Another example of a major stressor in our lives, is oh, the wedding. It's not that bad. I finally finished the hanging pennants to hang around the tent. I made something like 80 something feet of the stuff. Insane. I went a little overboard on fabrics. com.
Yikes. This post is all over the place--- in true mania form, of course. =)
Speaking of being a bit mental- I read my old diaries to find some good dates about when kyle and I shared our first kiss, and first held hands, and whatnot. AND MAN! Reading my diary is exhausting. I was out. of. my. mind. Almost literally. I was all over the place emotionally.It was scary to read. Makes me wonder if I should have been seeing someone the whole time. Although, I must say, sometimes I'm quite funny. I'll be talking about something so serious and morbid and I'll out of the blue say something like "Oh, yea, by the way, I won a hamster at the pet store today. I named he Q. " and then continue on my sad morbid story without a blink of an eye.
It made me really reflect on how I live my life now. In so many ways I'm completely the same. Thoughts are just moving so fast that they end up all over the place, and if I'm writing them down, well.. let's just say instead of a van-goh I'm finger-painting over here. Although, I am a whole heck of a lot better, I know now that I usually need to stop collect my thoughts really think about what I want to say, before I say it. After glancing over this entry it's probably only when I'm speaking. Although, kyle has helpful reminders like when I 'm trying to tell him something and I start 7 different sentences "Okay, so I was" "No, he" "So this thing," "Ummm" "oh he and ...no" ----> this happens more than I like to admit. Kyle will jump in, "Beth, you haven't said a single thing yet, but you're somehow still talking?" Yup, take two.
Let's see if I can wrap this up so everything sounds like it was intentional:
In conclusion, reading those old diary entries really helped me reflect on how I live now. It reminded me that problems that seem huge, end up being insignificant in the long run. It made me realize just how all over the place I can be. Being more aware of myself, I feel confident I can handle the stress we are juggling as a family at this point in time. Although, having kayldeco will aid in that department, a healthy girl is a happy girl!
The end.
PS I felt like I was writing an essay for my conclusion.
Continuing my alarmingly bi-polar emotions.. I have some pretty awesome news! My kalydeco was finally approved. My mom, being a mom, called up the insurance company with my step-aunt (who used to work for said insurance company) and they proceeded to huff and puff and blow the house down. Or something to that effect. All I know, is the company called my clinic, said they would work something out, and then...BAM, a few days later they said they would approve my usage until 2017. That's 5 years people. I'll be 28 when this deal expires.
I am, thankfully, feeling a ton better. I started a 3 week course of some wonderful MRSA killing agents. My obnoxious moodiness is gone, phew, but stress is still here. For example, we are still counting down the days till Kyle takes his PhD qualifying exams for which he is doing nothing but studying, eating, feeling sick, not sleeping, and my favorite of all continually whimpering that he has to do this big exam. Another example of a major stressor in our lives, is oh, the wedding. It's not that bad. I finally finished the hanging pennants to hang around the tent. I made something like 80 something feet of the stuff. Insane. I went a little overboard on fabrics. com.
Yikes. This post is all over the place--- in true mania form, of course. =)
Speaking of being a bit mental- I read my old diaries to find some good dates about when kyle and I shared our first kiss, and first held hands, and whatnot. AND MAN! Reading my diary is exhausting. I was out. of. my. mind. Almost literally. I was all over the place emotionally.It was scary to read. Makes me wonder if I should have been seeing someone the whole time. Although, I must say, sometimes I'm quite funny. I'll be talking about something so serious and morbid and I'll out of the blue say something like "Oh, yea, by the way, I won a hamster at the pet store today. I named he Q. " and then continue on my sad morbid story without a blink of an eye.
It made me really reflect on how I live my life now. In so many ways I'm completely the same. Thoughts are just moving so fast that they end up all over the place, and if I'm writing them down, well.. let's just say instead of a van-goh I'm finger-painting over here. Although, I am a whole heck of a lot better, I know now that I usually need to stop collect my thoughts really think about what I want to say, before I say it. After glancing over this entry it's probably only when I'm speaking. Although, kyle has helpful reminders like when I 'm trying to tell him something and I start 7 different sentences "Okay, so I was" "No, he" "So this thing," "Ummm" "oh he and ...no" ----> this happens more than I like to admit. Kyle will jump in, "Beth, you haven't said a single thing yet, but you're somehow still talking?" Yup, take two.
Let's see if I can wrap this up so everything sounds like it was intentional:
In conclusion, reading those old diary entries really helped me reflect on how I live now. It reminded me that problems that seem huge, end up being insignificant in the long run. It made me realize just how all over the place I can be. Being more aware of myself, I feel confident I can handle the stress we are juggling as a family at this point in time. Although, having kayldeco will aid in that department, a healthy girl is a happy girl!
The end.
PS I felt like I was writing an essay for my conclusion.
Thursday, August 2, 2012
The "She's completely overreacting and being melodramatic" Post
This is a post that may not get published, and may make no sense. I just need a place to see if I can't get all my thoughts and stresses out. They won't be in order, they won't make sense, but rarely does anything fit in a nice neat box.
I'm struggling. It's no secret I don't handle stress well. Between stress and change, I get overly emotional, so much to the point that I was once mis-diagnosed as being bi-polar. Turns out I just have an adjustment issue. Having CF amplifies this problem. I like to plan, and when things start falling out of line of my meticulously planned schedule I get frustrated. Or I miss one dose of an inhaled med, and all hope is lost.
I struggle. I struggle putting myself first. Putting my health first. I like to please other people. I want their opinion of me to be a good one. I don't do well with peer pressure, and I am a complete suck-up. This is not a good combo when it comes to having CF. Sure, if I'm tired and I know the best thing for me is going home, taking a nap, and guzzling some fluids... yet, in this tired state, I'll happily run myself into the ground at someone else's expense. To make someone else's life easier, even if it makes mine more complicated.
I struggle with acceptance. I never struggled with this when I was younger, but as soon as I was aware of how big, that difference was between myself and my peers I've struggled. I go through phases where I just won't quit. I am the boss. CF doesn't define me. The whole nine yards. Then dip back into the second point I made where I don't put myself first, and all hope is lost. I suddenly flip flop unable to handle the fact that I will always have to take time out of my day to sit hooked up to a machine, whether I'm attached by vest or by nebulizer. I am overwhelmingly aware of all the extra time, and effort, and worry that goes hand in hand with living with CF. And this awareness is painful. It hurts. It runs deep and it hurts.
I struggle with motivation. I could give you a hundred reasons logically why I want to do something, and yet I find myself struggling with daily routines. There's nothing more I'd love to be than compliant. And yet pills get forgotten, and inhaled meds are skipped. I never feel good about those decisions but I consciously make them. I'd love to keep all the counters in the house clean, but everytime they start off clean, it only takes one item out of place for everything to snowball.
Lastly, I'm tired. I'm tired of these extremes I go through. I'm tried of people telling me to 'just do it.' I'm tired of people assuming they know exactly what my life is like. Even with CF everybody's life is different. But mainly I'm tired of disappointing myself. Not loving myself enough, not holding myself accountable for my decisions, I'm just tired of it all.
Blah. dramatic much? Can you tell I'm not feeling great?
I'm struggling. It's no secret I don't handle stress well. Between stress and change, I get overly emotional, so much to the point that I was once mis-diagnosed as being bi-polar. Turns out I just have an adjustment issue. Having CF amplifies this problem. I like to plan, and when things start falling out of line of my meticulously planned schedule I get frustrated. Or I miss one dose of an inhaled med, and all hope is lost.
I struggle. I struggle putting myself first. Putting my health first. I like to please other people. I want their opinion of me to be a good one. I don't do well with peer pressure, and I am a complete suck-up. This is not a good combo when it comes to having CF. Sure, if I'm tired and I know the best thing for me is going home, taking a nap, and guzzling some fluids... yet, in this tired state, I'll happily run myself into the ground at someone else's expense. To make someone else's life easier, even if it makes mine more complicated.
I struggle with acceptance. I never struggled with this when I was younger, but as soon as I was aware of how big, that difference was between myself and my peers I've struggled. I go through phases where I just won't quit. I am the boss. CF doesn't define me. The whole nine yards. Then dip back into the second point I made where I don't put myself first, and all hope is lost. I suddenly flip flop unable to handle the fact that I will always have to take time out of my day to sit hooked up to a machine, whether I'm attached by vest or by nebulizer. I am overwhelmingly aware of all the extra time, and effort, and worry that goes hand in hand with living with CF. And this awareness is painful. It hurts. It runs deep and it hurts.
I struggle with motivation. I could give you a hundred reasons logically why I want to do something, and yet I find myself struggling with daily routines. There's nothing more I'd love to be than compliant. And yet pills get forgotten, and inhaled meds are skipped. I never feel good about those decisions but I consciously make them. I'd love to keep all the counters in the house clean, but everytime they start off clean, it only takes one item out of place for everything to snowball.
Lastly, I'm tired. I'm tired of these extremes I go through. I'm tried of people telling me to 'just do it.' I'm tired of people assuming they know exactly what my life is like. Even with CF everybody's life is different. But mainly I'm tired of disappointing myself. Not loving myself enough, not holding myself accountable for my decisions, I'm just tired of it all.
Blah. dramatic much? Can you tell I'm not feeling great?
Tuesday, July 24, 2012
Purgatory. It could be worse.
Growing up there was this awesome park my mother used to take me to occasionally. It was great on a summers day because it was usually cooler than sitting around. The park contains a deep chasm of granite rock. There are about two miles of hiking trails throughout the chasm. Some parts of the chasm even have silly names: Fat Man's Misery (a narrowing path between two rocks, optional to go through of course) His Majesty's Cave, and Lovers' Leap - just to name a few that I can remember. The chasm had donned itself the name: Purgatory Chasm.
I find it ironic that when I hear the word purgatory my mind automatically draws up the fun adventures my family had at Purgatory Chasm. I think the name suited the place very well, not quite in hell, yet not quite ready for heaven. Hovering in an in-between state.
Currently my life resides in sort of an insurance purgatory if you will. Not quite denied, yet not quite approved. Recently after fighting for a few months to get Kalydeco approved, due to unfortunate events, I had to return to my mothers' insurance plan. After only 1 month on Kalydeco, I was now faced with fighting a whole new battle, and yet the same battle I just fought.
While there is good news, (it's already on the formulary, the good news is balanced out with the bad news: they need proof from a DNA approved lab that I do infact, have the G551D mutation. Initially, I didn't think was a big deal. However, it turned into a big deal when they decided that they needed the official paperwork from the Lab. I was tested almost 20 years ago, when papers were taped into a manilla folder, and we prayed to the medical gods that nothing would be lost, or blow off with the wind.
Turns out the gods mock me. The one paper I needed, is the one that is lost. Gone. Poof. The only paper I do have that states my mutations, listed one of them incorrectly. Can you guess which one? I'll give you a hint, it wasn't deltaF508. Yup, they made an error 19 years ago when they wrote "G5112".
So as I'm mulling about in my own personal insurance purgatory, all I can do is wait. I've sent off my bloodwork for a test we already know the answer to, and now I can wait for 8-10 weeks for results... after I pay them 1,000 dollars. Psh. Is it really any surprise by now that insurance won't consider it an 'in-network' cost? Nope, no surprise here. But that's not all, let's continue on this purgatory tour, shall we?
After waiting a few months for results to come (all the while NOT on kalydeco) we get to send off the paperwork where we can "start the appeal process" as my nurse informed me. Wait, wait, so I don't get to go right on it after we hand in the newly printed, hot off the press, cost me one thousand dollars - results?? Well, of course not. Silly me, really, I should have known better.
All in all, I'm oddly okay with all of this. Granted, I'm NOT okay with the fact that I have to go through all these hoops after already performing like a circus dog for my other insurance company. But rather, I have too much already to stress about to add this to the list. There's nothing I can do except wait.
I think the universe might be trying to tell me something: perhaps time can bring good things? Those who wait, will be rewarded? Well, on the bright side? At least I'm not stuck waiting in here:
I find it ironic that when I hear the word purgatory my mind automatically draws up the fun adventures my family had at Purgatory Chasm. I think the name suited the place very well, not quite in hell, yet not quite ready for heaven. Hovering in an in-between state.
Currently my life resides in sort of an insurance purgatory if you will. Not quite denied, yet not quite approved. Recently after fighting for a few months to get Kalydeco approved, due to unfortunate events, I had to return to my mothers' insurance plan. After only 1 month on Kalydeco, I was now faced with fighting a whole new battle, and yet the same battle I just fought.
While there is good news, (it's already on the formulary, the good news is balanced out with the bad news: they need proof from a DNA approved lab that I do infact, have the G551D mutation. Initially, I didn't think was a big deal. However, it turned into a big deal when they decided that they needed the official paperwork from the Lab. I was tested almost 20 years ago, when papers were taped into a manilla folder, and we prayed to the medical gods that nothing would be lost, or blow off with the wind.
Turns out the gods mock me. The one paper I needed, is the one that is lost. Gone. Poof. The only paper I do have that states my mutations, listed one of them incorrectly. Can you guess which one? I'll give you a hint, it wasn't deltaF508. Yup, they made an error 19 years ago when they wrote "G5112".
So as I'm mulling about in my own personal insurance purgatory, all I can do is wait. I've sent off my bloodwork for a test we already know the answer to, and now I can wait for 8-10 weeks for results... after I pay them 1,000 dollars. Psh. Is it really any surprise by now that insurance won't consider it an 'in-network' cost? Nope, no surprise here. But that's not all, let's continue on this purgatory tour, shall we?
After waiting a few months for results to come (all the while NOT on kalydeco) we get to send off the paperwork where we can "start the appeal process" as my nurse informed me. Wait, wait, so I don't get to go right on it after we hand in the newly printed, hot off the press, cost me one thousand dollars - results?? Well, of course not. Silly me, really, I should have known better.
All in all, I'm oddly okay with all of this. Granted, I'm NOT okay with the fact that I have to go through all these hoops after already performing like a circus dog for my other insurance company. But rather, I have too much already to stress about to add this to the list. There's nothing I can do except wait.
 |
| Fat Man's Misery |
Thursday, June 28, 2012
Kalydeco Update and other Random Collections
First off, since I'm a terribly inconsistant blogger, I thought I would give you my 1 month Kalydeco update, about 2 weeks late.
Basically all the side effects I've experienced have finally passed... except for maybe the increase acne. Oh what joy! I still have an amazingly productive cough, and I cough less frequently. Very similar to when I get out of the hospital. I have a great supply of energy but still no weight gain. I'm thinking I may need to start checking my sugars once again since that could be the culprit.
I had a clinic appointment 17 days into my first Kalydeco month. My lung function went from 2.33 L (fev1) to 2.63 L (fev1); also known as 70% - 76.6%! Amazing. I haven't seen a number that high since High School... 17 perhaps? 6 years ago! Also, please note that 76.6% and/or 2.63 L is about 2% .2L higher than my post hospitalization numbers, which never stick around for very long before I'm back down hovering around 68-70%.
I've noticed since switching over from cayston to Tobi, that I cough more on tobi, and I cough more gunk up during this tobi month. It's pretty consistant with my behaviors without kalydeco. I respond better to Cayston for puesdo killing than I do on tobi. However the difference is a lot more noticable on Kalydeco.
The only annoying thing I can think of about Kalydeco is I find myself needing to clear my throat of mucus ALL the time. Almost everytime before I speak, I find myself *ahem*ing. Tremendously annoying when you're trying to softly hum sleepy sounds to a tired baby and you all of a sudden can't hum anymore because the mucus in your vocal cords has made you mute. enter *ahem* and then you're good to keep humming but baby is also now awake. Sigh.
Next order of business:this article. The one about parents suing and being awarded 13 million in damages for their child born with CF. Ronnie Sharp- over at Run Sickboy Run- posted this on his facebook page and it received quite a few comments. The majority of commenters all had something to say along the lines of "That poor girl! Knowing her parents think her birth was a mistake" or "those parents are so selfish!" "messing with god's plans" and so on.
For a long time I've struggled with accepting that some people just don't mind their CF. It makes them stronger as a person. Tough for me to swallow but to each his own. Yet, when I read this article and then the comments afterwards all those pent up opinions wanted to break out. I wrote a comment, and then deleted it, not having enough courage to click 'enter.'
I truly believe that when people with CF claim 'they wouldn't trade their CF because it's made them who they are today," blah blah blah, that it's a coping mechanism similar to denial. No one would choose to be born CF, no one would wish their loved ones had it, no one would wish this children had it... so why, do people keep telling me they wouldn't trade their CF for the world? If they were truly honest about not trading CF, why would they be so excited for advancements for a cure? You wouldn't trade it, yet if a cure were to roll around you probably would be in line to rid your body of CF. So why not admit that you would love to trade your CF?
These parents are suing the company because they believe they were wronged. I agree with them and support them. If I had the chance to be born without CF, but due to perhaps some negligence on the labs' behalf, I was born with those 2 mutations, I would want to hold the company who messed up accountable. That little girl's life will greatly differ from her twins' life. No matter how much they try to 'normalize' her CF, it just isn't normal. It is a genetic mutation. A mutation. Something that should not be existing and function in nature, but because of advances in technology it is. I am terribly grateful for these advances, but Cystic Fibrosis is not something I would ever choose to have.
These parents aren't selfish. This little girl shouldn't be horrified about the 'wrongful birth' suit, she should be grateful that her parents cared that much, and put that much effort in to help alleviate some of the cost associated with CF so that perhaps the margin of difference between her twin brother or sister, can be that much smaller. I think we need to support these parents just like we do all the other CF families.
And that's that.
Basically all the side effects I've experienced have finally passed... except for maybe the increase acne. Oh what joy! I still have an amazingly productive cough, and I cough less frequently. Very similar to when I get out of the hospital. I have a great supply of energy but still no weight gain. I'm thinking I may need to start checking my sugars once again since that could be the culprit.
I had a clinic appointment 17 days into my first Kalydeco month. My lung function went from 2.33 L (fev1) to 2.63 L (fev1); also known as 70% - 76.6%! Amazing. I haven't seen a number that high since High School... 17 perhaps? 6 years ago! Also, please note that 76.6% and/or 2.63 L is about 2% .2L higher than my post hospitalization numbers, which never stick around for very long before I'm back down hovering around 68-70%.
I've noticed since switching over from cayston to Tobi, that I cough more on tobi, and I cough more gunk up during this tobi month. It's pretty consistant with my behaviors without kalydeco. I respond better to Cayston for puesdo killing than I do on tobi. However the difference is a lot more noticable on Kalydeco.
The only annoying thing I can think of about Kalydeco is I find myself needing to clear my throat of mucus ALL the time. Almost everytime before I speak, I find myself *ahem*ing. Tremendously annoying when you're trying to softly hum sleepy sounds to a tired baby and you all of a sudden can't hum anymore because the mucus in your vocal cords has made you mute. enter *ahem* and then you're good to keep humming but baby is also now awake. Sigh.
Next order of business:this article. The one about parents suing and being awarded 13 million in damages for their child born with CF. Ronnie Sharp- over at Run Sickboy Run- posted this on his facebook page and it received quite a few comments. The majority of commenters all had something to say along the lines of "That poor girl! Knowing her parents think her birth was a mistake" or "those parents are so selfish!" "messing with god's plans" and so on.
For a long time I've struggled with accepting that some people just don't mind their CF. It makes them stronger as a person. Tough for me to swallow but to each his own. Yet, when I read this article and then the comments afterwards all those pent up opinions wanted to break out. I wrote a comment, and then deleted it, not having enough courage to click 'enter.'
I truly believe that when people with CF claim 'they wouldn't trade their CF because it's made them who they are today," blah blah blah, that it's a coping mechanism similar to denial. No one would choose to be born CF, no one would wish their loved ones had it, no one would wish this children had it... so why, do people keep telling me they wouldn't trade their CF for the world? If they were truly honest about not trading CF, why would they be so excited for advancements for a cure? You wouldn't trade it, yet if a cure were to roll around you probably would be in line to rid your body of CF. So why not admit that you would love to trade your CF?
These parents are suing the company because they believe they were wronged. I agree with them and support them. If I had the chance to be born without CF, but due to perhaps some negligence on the labs' behalf, I was born with those 2 mutations, I would want to hold the company who messed up accountable. That little girl's life will greatly differ from her twins' life. No matter how much they try to 'normalize' her CF, it just isn't normal. It is a genetic mutation. A mutation. Something that should not be existing and function in nature, but because of advances in technology it is. I am terribly grateful for these advances, but Cystic Fibrosis is not something I would ever choose to have.
These parents aren't selfish. This little girl shouldn't be horrified about the 'wrongful birth' suit, she should be grateful that her parents cared that much, and put that much effort in to help alleviate some of the cost associated with CF so that perhaps the margin of difference between her twin brother or sister, can be that much smaller. I think we need to support these parents just like we do all the other CF families.
And that's that.
Monday, May 21, 2012
Every listed side effect in action! Oh Kalydeco!
Week One:
After waiting for what seemed like AGES, I finally was handed my little blue pills on Saturday. My UPS driver laughed and said "Must be something imporant!" because I was waiting like a little kid for the ice cream truck. My UPS driver is awesome, if we're hanging out on the porch he hops out to say hi to Oliver and give him a treat, even if he doesn't have a package for us. He's just cool like that....but, I digress.
I ripped open the package and did my happy dance, singing "It's here! It's here! It's here!" I then had to spend the whole day waiting just to take my first dose. At 8 o'clock sharp, down the hatch!
12 hours later, another dose, my second was consumed. Around 10 o'clock in the morning, two hours after my second dose I noticed I started coughing a bit more. And by a bit more I mean, all the time. It would just spring up on me suddenly. I had no feeling of needing to cough, I just coughed one cough, and man oh man. I was bringing up gobs full of stuff. I was surprised all of it could fit in my lungs! What was interesting was that it required no effort on my part. It was almost as if I had finished some Autogenic drainage and was waiting for that final huff cough. You know, the one where liquid gold is produced? They were all like that.
After only 15 hours on the medication, I was already seeing results! That, and my nose started running like nobody's business. I also, for the first time in a very very long time, could breathe out of both notstrils. Oh the wonderment of the world. I was extremely sensitive to smell that day.
I also had some slight low grade fevers towards the end of the night, and was pretty tired from all that coughing. I definitely felt a little 'run down' or 'cold like symptoms' with general ickyness towards the night. Think low fever, achy, tired, headache, and of course cranky.
Throughout the week I've noticed on and off bouts of coughing. I've also managed to get some pretty nasty gunk out of my nose. I'm not sure if these plug like logs have been hanging out in my sinus' the whole time, or if I've sneezed them up there from my lungs. As gross as it is, I think they are just hanging out in my sinus', which is really grossing me out. I've snot shot (haha so fun to say!) 4 or 5 of these things. Having CF, I'm not stranger to gross mucus, but man, these things are nasty.
I've started having headaches every day around the same time. They last for the rest of the afternoon/night. Which is a bummer, because I get cranky. My headaches are concentrated in my sinus areas including the roof of my mouth. (I first thought I had a killer cavity, but upon furthur investigation we decided it was indeed the roof of my mouth.)
Today, on day 6, I have a sore throat, and my glands feel pretty big.
Another intersting side effect I've been experience is Acne. Oh, the joys! I can feel like I'm in high school all over again. Normally, I get a pimple here or there, but for the most part my skin is pretty clear. I always have some blackheads on my nose, and more recently my chin, but hey, everyone's got pores.
My kalydeco acne though? Oh it's big, bad, and it hurts! I woke up thinking maybe I smashed my chin funky at gymnastics and just couldn't recall faceplanting into a big blue mat, but really, that situation is something you remember. I just couldn't figure out what this huge painful lump was on my chin. Oh, yea, that's just a pimple that's about to eat my face, no big deal. Sigh. Oh kalydeco I didn't know you'd cause me acne! *Update- by day 9 I have a few more chin eating pimples to join it's friend*
Towards the evenings I've been feeling tired, almost run down.
So this week has been interesting. Lots of coughing, easy coughing, lots of gunk, lots of painful sinus action, and one giant pimple that has taken over my chin. (You probably think I'm exaggerating, but when I showed Kyle he said he couldn't see it... until I pointed it out, and then he got all wide-eyed and said "Oh. My. I thought that was just your chin! I'm so sorry honey!!" ) It's pretty bad.
I'm just thankful it's the weekend so I can catch up on some sleep and get some extra saline and vest time in to help all this junk on its way out.
One last thing I've noticed: the other day after easy coughing I noticed the mucous I was bringing up was white. Not green, not yellow, oh nay nay, white. Intersting? I think so! Exciting? For sure.
And now I will go and edit this at a later date so it all makes sense.
The end.
Weekend Update:
I did 3 days of manual labor, and I wasn't ready to pass out by the end of it. I'm definitely not as tired, less salty when I sweat (Kyle checked- what a dear!), and my headaches are letting up a little. I still have major chin acne, along with some forehead action too, and my sinus' are really hurting. My right nostril has a polyp, and has had it ever since I can remember, but I really think it's restricting the flow that kalydeco has started up there. I think all my sinus junk wants to come out, but is blocked by my huge polyp. It never caused me many problems before, but its to the point where you can see on the outside of my face, that it's begininning to look swollen.
I'm excited to see what my PFT's will look like in 10 days.
*Due to numerous spam comments the comment section will be closed on this entry*
After waiting for what seemed like AGES, I finally was handed my little blue pills on Saturday. My UPS driver laughed and said "Must be something imporant!" because I was waiting like a little kid for the ice cream truck. My UPS driver is awesome, if we're hanging out on the porch he hops out to say hi to Oliver and give him a treat, even if he doesn't have a package for us. He's just cool like that....but, I digress.
I ripped open the package and did my happy dance, singing "It's here! It's here! It's here!" I then had to spend the whole day waiting just to take my first dose. At 8 o'clock sharp, down the hatch!
12 hours later, another dose, my second was consumed. Around 10 o'clock in the morning, two hours after my second dose I noticed I started coughing a bit more. And by a bit more I mean, all the time. It would just spring up on me suddenly. I had no feeling of needing to cough, I just coughed one cough, and man oh man. I was bringing up gobs full of stuff. I was surprised all of it could fit in my lungs! What was interesting was that it required no effort on my part. It was almost as if I had finished some Autogenic drainage and was waiting for that final huff cough. You know, the one where liquid gold is produced? They were all like that.
After only 15 hours on the medication, I was already seeing results! That, and my nose started running like nobody's business. I also, for the first time in a very very long time, could breathe out of both notstrils. Oh the wonderment of the world. I was extremely sensitive to smell that day.
I also had some slight low grade fevers towards the end of the night, and was pretty tired from all that coughing. I definitely felt a little 'run down' or 'cold like symptoms' with general ickyness towards the night. Think low fever, achy, tired, headache, and of course cranky.
Throughout the week I've noticed on and off bouts of coughing. I've also managed to get some pretty nasty gunk out of my nose. I'm not sure if these plug like logs have been hanging out in my sinus' the whole time, or if I've sneezed them up there from my lungs. As gross as it is, I think they are just hanging out in my sinus', which is really grossing me out. I've snot shot (haha so fun to say!) 4 or 5 of these things. Having CF, I'm not stranger to gross mucus, but man, these things are nasty.
I've started having headaches every day around the same time. They last for the rest of the afternoon/night. Which is a bummer, because I get cranky. My headaches are concentrated in my sinus areas including the roof of my mouth. (I first thought I had a killer cavity, but upon furthur investigation we decided it was indeed the roof of my mouth.)
Today, on day 6, I have a sore throat, and my glands feel pretty big.
Another intersting side effect I've been experience is Acne. Oh, the joys! I can feel like I'm in high school all over again. Normally, I get a pimple here or there, but for the most part my skin is pretty clear. I always have some blackheads on my nose, and more recently my chin, but hey, everyone's got pores.
My kalydeco acne though? Oh it's big, bad, and it hurts! I woke up thinking maybe I smashed my chin funky at gymnastics and just couldn't recall faceplanting into a big blue mat, but really, that situation is something you remember. I just couldn't figure out what this huge painful lump was on my chin. Oh, yea, that's just a pimple that's about to eat my face, no big deal. Sigh. Oh kalydeco I didn't know you'd cause me acne! *Update- by day 9 I have a few more chin eating pimples to join it's friend*
Towards the evenings I've been feeling tired, almost run down.
So this week has been interesting. Lots of coughing, easy coughing, lots of gunk, lots of painful sinus action, and one giant pimple that has taken over my chin. (You probably think I'm exaggerating, but when I showed Kyle he said he couldn't see it... until I pointed it out, and then he got all wide-eyed and said "Oh. My. I thought that was just your chin! I'm so sorry honey!!" ) It's pretty bad.
I'm just thankful it's the weekend so I can catch up on some sleep and get some extra saline and vest time in to help all this junk on its way out.
One last thing I've noticed: the other day after easy coughing I noticed the mucous I was bringing up was white. Not green, not yellow, oh nay nay, white. Intersting? I think so! Exciting? For sure.
And now I will go and edit this at a later date so it all makes sense.
The end.
Weekend Update:
I did 3 days of manual labor, and I wasn't ready to pass out by the end of it. I'm definitely not as tired, less salty when I sweat (Kyle checked- what a dear!), and my headaches are letting up a little. I still have major chin acne, along with some forehead action too, and my sinus' are really hurting. My right nostril has a polyp, and has had it ever since I can remember, but I really think it's restricting the flow that kalydeco has started up there. I think all my sinus junk wants to come out, but is blocked by my huge polyp. It never caused me many problems before, but its to the point where you can see on the outside of my face, that it's begininning to look swollen.
I'm excited to see what my PFT's will look like in 10 days.
*Due to numerous spam comments the comment section will be closed on this entry*
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