Do you realize that last year I wrote an enormous amount of entries on this blog? Oh, what, you can't sense the sarcasm dripping off that last sentence? I wrote 5 posts people. 5 posts in a whole year. This coming from the girl who gets mad if her favorite bloggers don't have their posts up by 10 am each day.
Well, I apologize for the super awful blogger-ness lately. So let's get down to the important stuff, a recap if you will: 2013 in a nutshell.
1. January: The first year I didn't make traditional resolutions since I think you don't need a new year to change what you want to change, you just need commitment. Kyle also decided to post-pone his PhD qualifying exam until the end of summer.
2. February: Um... nothing rings a bell, must have been an exciting month.
3. March: Went on a 10 day honeymoon cruise where we proceeded to be seasick for 4 days, get the worst sunburns of our lives on day 3, met a monkey, saw & walked in the rainforest, and discovered the deliciousness that is mojitos.
4.April: I guess nothing significant happened this month?
5. May: I built a bunch of things with powertools, and started working on the dreaded porch. I managed to paint the porch ceiling, and start the trim.
6. June: Finished painting the porch including the floor! We had only been working on it for oh, you know, 2 years.
7. July: Helped my family I nannied for move to a different state and said goodbye to my job of the last 2 years. =( Also got sinus surgery for the first time. I CAN BREATHE THROUGH MY NOSE PEOPLE! And yes, all caps was necessary for that statement.
8. August: Healed from surgery started working out regularly in attempt to gain weight & muscle. Kyle passes his Qualifying exams and doesn't get kicked out of the PhD program. Hooray! I got a new job close to my house.
9. September: I start going for acupuncture for 'fertility' while continuing to gain weight via working out and whathave you. I took kyle camping towards the end of the month for his birthday and totally impresses him by making a fire in the pitch dark with nothing but the things we gathered. (After he had taken some attempts and given up!) I also hated my new job.
10. October: I quite my new job.Went into the hospital for a tune up and found out I was pregnant!
11. November: I only experienced 4 days of being 'sick' in the first trimester but they were of course the days around thanksgiving where Kyle's family came down. His mom wanted to rush me to the ER, so we abandoned the plan and broke the good news a bit earlier than intended to his parents.
12: December: We told all my family, and remaining family on Kyle's side that we were pregnant! We also visited all our friends and broke the good news. I started the second trimester this month too.
THE END.
I'm writing baby updates on a different blog these days. And by 'these days' I mean I've written 2 posts. You're welcome to follow along if you'd like. Blog link here!
Saturday, January 11, 2014
Thursday, September 5, 2013
I swear I'm still alive!
Hi.
My name is Beth, and I have a blogging problem. I used to blog here, it was a long long time ago. Then I stopped.
Eh, what are you really gonna do about it you know? Life gets in the way. There was also the thing of I had nothing meaningful at all to jibber-jabber about into cyber space.
Sure, I could have written posts about sinus surgery (went well), losing 12 pounds that I worked so hard for (I blame the surgery), my husband finally passing his PhD qualifying exams (hallelujah!), or just how in-love with summer I am, and how sad I am to see it go... but, nothing seemed right.
Even this entry doesn't fit the criteria of 'blog worthy'; a hard thing to come by these days. Yet, alas, here it is. I really just wanted to let you- my faithful readers- (cricket cricket) know that I am still alive.
The end.
My name is Beth, and I have a blogging problem. I used to blog here, it was a long long time ago. Then I stopped.
Eh, what are you really gonna do about it you know? Life gets in the way. There was also the thing of I had nothing meaningful at all to jibber-jabber about into cyber space.
Sure, I could have written posts about sinus surgery (went well), losing 12 pounds that I worked so hard for (I blame the surgery), my husband finally passing his PhD qualifying exams (hallelujah!), or just how in-love with summer I am, and how sad I am to see it go... but, nothing seemed right.
Even this entry doesn't fit the criteria of 'blog worthy'; a hard thing to come by these days. Yet, alas, here it is. I really just wanted to let you- my faithful readers- (cricket cricket) know that I am still alive.
The end.
Tuesday, February 5, 2013
Afraid of the Dark
When reading my blog title, if you immediately thought of the old Nickelodian show Are You Afraid of the Dark, ten extra points to you. Unfortunately you lose those ten extra points because this is no way,shape or form, connected to Nic's awesomely perhaps-too-scary-for-a-gullible-7-year-old show. . . bummer right?
One of the bloggers I follow recently wrote a post that I cannot stop thinking about. I often find when Cindy writes that I like to read and reread what she's written because she so beautifully takes a world full of chaos and managed to break it down into it's simplicities at their finest.
She mentions she's a planner, and I think have CF makes all of us planner to some degree. Unfortunately we just can't up and go on some exciting spontaneous trip. We need to carefully calculate how long we'll be gone, how long we'll be traveling without a fridge, counting pills, trying to plan any unforeseen hiccups just incase we need extra dosages of anything. . . we're natural planners. We plan when to squeeze in treatments and how to spend our few spoons of energy when we're sick. Planning the most appropriate times to head in for a 'clean-out' or tune-up. Like it or not, we plan the heck out of any situation. A lot of the time, our health and lives depend on it.
While Cindy has declared that she's finding peace with letting the future stay dark, I am - have always been- afraid of the dark. Give me light of any source and I will run and cower under it, lest those shadow monsters try to nibble my toes! I'm not sure what it is about not knowing that makes that sea of anxiety creep up, flooding my body until it finds it's escape through my eyeballs. Darn those leaky tear ducts can't even hold my anxiety ocean back. While my loving husband has thrown me life-vest after life-vest there are sometimes that even with the life-vest I can't help shake that panic of "Help, me! I'm drowning."
I read so many positive CF bloggers out there and then I sit down to write and all that comes flowing from my fingers is negativity. Anxiety. Suddenly, I'm a too gullible seven year old clutching to my flashlight under my covers because yes, turns out, I am afraid of the dark. It's something I've struggled with my entire life, and I think I will continue to struggle with my entire life more. Oddly enough, I'm okay with that. We all struggle at times, some more than others. Just like the universe, my natural state happens to be chaos.
While I may feel overwhelmed with options or directions my life could go in, I also feel grateful, humbled and incredibly small. To be experiencing such infinity can be paralyzing. And while I'm still grasping to my flashlight I take comfort in knowing that should my flashlight ever dim, falter or even die; even in the darkest of nights my eyes would eventually adjust and I would be able to find my way (hopefully to a light switch!) Would it be scary? At first, of course! But given time, I may not need a flashlight after all.
One of the bloggers I follow recently wrote a post that I cannot stop thinking about. I often find when Cindy writes that I like to read and reread what she's written because she so beautifully takes a world full of chaos and managed to break it down into it's simplicities at their finest.
She mentions she's a planner, and I think have CF makes all of us planner to some degree. Unfortunately we just can't up and go on some exciting spontaneous trip. We need to carefully calculate how long we'll be gone, how long we'll be traveling without a fridge, counting pills, trying to plan any unforeseen hiccups just incase we need extra dosages of anything. . . we're natural planners. We plan when to squeeze in treatments and how to spend our few spoons of energy when we're sick. Planning the most appropriate times to head in for a 'clean-out' or tune-up. Like it or not, we plan the heck out of any situation. A lot of the time, our health and lives depend on it.
While Cindy has declared that she's finding peace with letting the future stay dark, I am - have always been- afraid of the dark. Give me light of any source and I will run and cower under it, lest those shadow monsters try to nibble my toes! I'm not sure what it is about not knowing that makes that sea of anxiety creep up, flooding my body until it finds it's escape through my eyeballs. Darn those leaky tear ducts can't even hold my anxiety ocean back. While my loving husband has thrown me life-vest after life-vest there are sometimes that even with the life-vest I can't help shake that panic of "Help, me! I'm drowning."
I read so many positive CF bloggers out there and then I sit down to write and all that comes flowing from my fingers is negativity. Anxiety. Suddenly, I'm a too gullible seven year old clutching to my flashlight under my covers because yes, turns out, I am afraid of the dark. It's something I've struggled with my entire life, and I think I will continue to struggle with my entire life more. Oddly enough, I'm okay with that. We all struggle at times, some more than others. Just like the universe, my natural state happens to be chaos.
While I may feel overwhelmed with options or directions my life could go in, I also feel grateful, humbled and incredibly small. To be experiencing such infinity can be paralyzing. And while I'm still grasping to my flashlight I take comfort in knowing that should my flashlight ever dim, falter or even die; even in the darkest of nights my eyes would eventually adjust and I would be able to find my way (hopefully to a light switch!) Would it be scary? At first, of course! But given time, I may not need a flashlight after all.
Thursday, January 31, 2013
Haikus and Norovirus'
It's been a long time since I've written Haiku's so forgive me if the format is completely bogus. I decided to stick with 5-7-5 mini haiku's since I don't know if you have a bunch strung together if it's still a haiku. If you know feel free to enlighten me.
It's also been a long time since I've thrown up. And coughing till you throw up is sooo much different than your body just naturally throwing up. I forgot how gross it was. I also don't think I will ever pair Indian food with steamed cabbage ever again.
Without further ado the Norovirus Haiku:
Indian food and more
Why is this bathroom so small?
Here it comes again.
Oh norovirus
you now hate even water
bye bye all my food
Being up all night
praying to the porcelain
let this be the last
But surprise, it's not!
the norovirus I loathe
settle down belly
now that it's morning
I've thrown up all that I can
finally resting
slinking off to bed
with a bucket in my hand
sleep? sleep? sleep? sleep?
On the bright side, I've managed to keep my humor. At one point in-between heaves I was chuckling because throwing up cabbage is actually pretty darn funny.
It's also been a long time since I've thrown up. And coughing till you throw up is sooo much different than your body just naturally throwing up. I forgot how gross it was. I also don't think I will ever pair Indian food with steamed cabbage ever again.
Without further ado the Norovirus Haiku:
Indian food and more
Why is this bathroom so small?
Here it comes again.
Oh norovirus
you now hate even water
bye bye all my food
Being up all night
praying to the porcelain
let this be the last
But surprise, it's not!
the norovirus I loathe
settle down belly
now that it's morning
I've thrown up all that I can
finally resting
slinking off to bed
with a bucket in my hand
sleep? sleep? sleep? sleep?
On the bright side, I've managed to keep my humor. At one point in-between heaves I was chuckling because throwing up cabbage is actually pretty darn funny.
Friday, January 11, 2013
1100 mg of Lithium is 1100mg too many.
A fellow blogger, John, asked about my increase in lung function and what I did to get it there.While I certainly don't have a neat and tidy answer, it did make me reflect on the journey to this point. So here goes, my "So much more than you actually wanted to know" story:
I can still remember the day I went into my new clinic feeling like crap, even though just a few weeks prior I had had a tune-up. I blew a 47. Forty-seven! I was devastated I was completely heartbroken. All I could picture was my sister strapped to her o2 machine, knitting to pass the time while she waited for a new pair of lungs, and here I was blowing a 47. As much as I loved my sister there was no way I wanted to follow in her footsteps.
I struggled in 2009 with a mis-diagnoses of bi-polar disorder and was put on SO many toxic doses of medications I didn't need. Let me tell you one thing, anti-convulsants as a mood stabilizers are pretty nasty on their own, never mind if you don't actually need them. I was physically and emotionally ill. Terrifying doesn't even begin to cut it.
My new clinic, they were my savior. Those two pediatric pulmonologists saved my life. I packed my bags and headed in. They managed to bring me up to the 60's again and my lungs felt amazing. They tried to help me sort out my 'craziness,' as I used to call it by having a couple of psychiatric fellows come give me an evaluation. Unfortunately, at such a stressful time, not to mention being slowly poisoned by lithium, all the symptoms I described make it appear that I was indeed, still bi-polar and still needing medical help. They tweaked my dosage and sent me back to the regular psychiatrist who almost killed me. Literally. [That's a whole other story. for sure.]
With healthy lungs I tried to carry on. I had just moved down to Virginia (hence new clinic) to be with my now husband Kyle. I had no friends, no job, was stuck in an apartment all day because the anxiety of leaving was crippling Unfortunately I still have some lingering anxiety problems due to all the complexities that arose because of that silly mis-diagnoses. I got sick, I got even more depressed and a lot of tears were shed.
It was going home for christmas and sitting in a ball crying while everyone was out sledding that did me in. I had had enough. I weaned myself off with a tapering dose of my anti-convulsants , anti-psychotics and threw away my anxiety pills. (probably not the best call on that one!) but miraculously I started feeling better. Not, "I HAVE MANIA I FEEL AWESOME" better, but better.
When we got home, I packed my bags and went in again. I blew a 53 that time. I let them know what I was doing with my 'crazy meds' and they set someone up to follow me/ monitor the taper: which I rocked at apparently. Go me! Although I did get quite the scolding for starting tapering on my own! DONT DO THIS! GET YOUR DOCTORS PERMISSION! Then they introduced me to Shannon. She also was a vital part in saving my life. She was a grad student working with the CF clinic to get her psychology masters, or PhD. She was interested in becoming a counselor to those with chronic illness, more specifically CF.
I saw Shannon twice a week, and then once a week. Turns out I didn't need mood stabilizers, I just needed someone to listen to me. She helped me figure out my frustrations and anxiety, all the while, giving me tools to help cope and deal with them in a positive way. I think everyone needs a Shannon.
I left the hospital at 74%, that's 20% higher folks. Twenty! Although, we thought that was a false high coming off a 3 week course of prednisone. But man, I loved life. I made some friends, started exercising, got a job, became compliant. That year rocked. 2010 man; it was a great year.
I managed to find a base line of 68% and keep my lungs there! We managed to figure out that a general/meal/sleep schedule was key, and I couldn't sleep too much or that made me feel sick too! We were on a roll. 2011 carried on the same way and it was great. I continued to improve seeing 70's here and there. --Side note, I also went from a sickly skinny just barely 90 lbs, back to the low hundred range!--
When I moved to Baltimore I knew what had to be done: get a job, establish a routine, find some friends, and get some exercise. I was feeling so optimistic about everything. And then, the worst hospital stay of my life occurred and if I needed any more motivation to stay healthy that'll do it. After that disaster I was determined to stay out of that hospital for as long as sanely possibly. And I did. 18 months or so.
I really kept up my schedule of vesting & doing inhaled meds right in the morning, I picked up my activity level with a dog, gymnastics and lots of DIY projects around the house. And I've been flying ever since. But the biggest contributor to SUCH high numbers, would be Kalydeco. While I managed to get up to 72-74% by myself, Kalydeco really helped push me over the edge and I was that 82% after my first tune-up on Kalydeco. --side not again, I also think gaining some weight has helped out too! The heavier I weigh, the higher my fev1 creeps--
After reflecting on all of this, while I still hold some bitter feelings towards some medicines *cough- yea I'm looking at you, you anti-psychotics -cough* I feel so grateful that we have modern medicine and that I am blessed enough financially (and I guess genetically too!) to be a part of some exciting new drugs. I couldn't even begin to imagine where I'd be if I didn't have such caring, passionate and dedicated doctors down in Virginia. I am so sad that they can't continue to treat me, but they'll always hold such a special place in my heart.
Phew! This entry was wicked long. (Fun fact, using wicked as an adjective is a RI/MA thing I think, just like coffee milk and Dels. )
I can still remember the day I went into my new clinic feeling like crap, even though just a few weeks prior I had had a tune-up. I blew a 47. Forty-seven! I was devastated I was completely heartbroken. All I could picture was my sister strapped to her o2 machine, knitting to pass the time while she waited for a new pair of lungs, and here I was blowing a 47. As much as I loved my sister there was no way I wanted to follow in her footsteps.
I struggled in 2009 with a mis-diagnoses of bi-polar disorder and was put on SO many toxic doses of medications I didn't need. Let me tell you one thing, anti-convulsants as a mood stabilizers are pretty nasty on their own, never mind if you don't actually need them. I was physically and emotionally ill. Terrifying doesn't even begin to cut it.
My new clinic, they were my savior. Those two pediatric pulmonologists saved my life. I packed my bags and headed in. They managed to bring me up to the 60's again and my lungs felt amazing. They tried to help me sort out my 'craziness,' as I used to call it by having a couple of psychiatric fellows come give me an evaluation. Unfortunately, at such a stressful time, not to mention being slowly poisoned by lithium, all the symptoms I described make it appear that I was indeed, still bi-polar and still needing medical help. They tweaked my dosage and sent me back to the regular psychiatrist who almost killed me. Literally. [That's a whole other story. for sure.]
With healthy lungs I tried to carry on. I had just moved down to Virginia (hence new clinic) to be with my now husband Kyle. I had no friends, no job, was stuck in an apartment all day because the anxiety of leaving was crippling Unfortunately I still have some lingering anxiety problems due to all the complexities that arose because of that silly mis-diagnoses. I got sick, I got even more depressed and a lot of tears were shed.
It was going home for christmas and sitting in a ball crying while everyone was out sledding that did me in. I had had enough. I weaned myself off with a tapering dose of my anti-convulsants , anti-psychotics and threw away my anxiety pills. (probably not the best call on that one!) but miraculously I started feeling better. Not, "I HAVE MANIA I FEEL AWESOME" better, but better.
When we got home, I packed my bags and went in again. I blew a 53 that time. I let them know what I was doing with my 'crazy meds' and they set someone up to follow me/ monitor the taper: which I rocked at apparently. Go me! Although I did get quite the scolding for starting tapering on my own! DONT DO THIS! GET YOUR DOCTORS PERMISSION! Then they introduced me to Shannon. She also was a vital part in saving my life. She was a grad student working with the CF clinic to get her psychology masters, or PhD. She was interested in becoming a counselor to those with chronic illness, more specifically CF.
I saw Shannon twice a week, and then once a week. Turns out I didn't need mood stabilizers, I just needed someone to listen to me. She helped me figure out my frustrations and anxiety, all the while, giving me tools to help cope and deal with them in a positive way. I think everyone needs a Shannon.
I left the hospital at 74%, that's 20% higher folks. Twenty! Although, we thought that was a false high coming off a 3 week course of prednisone. But man, I loved life. I made some friends, started exercising, got a job, became compliant. That year rocked. 2010 man; it was a great year.
I managed to find a base line of 68% and keep my lungs there! We managed to figure out that a general/meal/sleep schedule was key, and I couldn't sleep too much or that made me feel sick too! We were on a roll. 2011 carried on the same way and it was great. I continued to improve seeing 70's here and there. --Side note, I also went from a sickly skinny just barely 90 lbs, back to the low hundred range!--
When I moved to Baltimore I knew what had to be done: get a job, establish a routine, find some friends, and get some exercise. I was feeling so optimistic about everything. And then, the worst hospital stay of my life occurred and if I needed any more motivation to stay healthy that'll do it. After that disaster I was determined to stay out of that hospital for as long as sanely possibly. And I did. 18 months or so.
I really kept up my schedule of vesting & doing inhaled meds right in the morning, I picked up my activity level with a dog, gymnastics and lots of DIY projects around the house. And I've been flying ever since. But the biggest contributor to SUCH high numbers, would be Kalydeco. While I managed to get up to 72-74% by myself, Kalydeco really helped push me over the edge and I was that 82% after my first tune-up on Kalydeco. --side not again, I also think gaining some weight has helped out too! The heavier I weigh, the higher my fev1 creeps--
After reflecting on all of this, while I still hold some bitter feelings towards some medicines *cough- yea I'm looking at you, you anti-psychotics -cough* I feel so grateful that we have modern medicine and that I am blessed enough financially (and I guess genetically too!) to be a part of some exciting new drugs. I couldn't even begin to imagine where I'd be if I didn't have such caring, passionate and dedicated doctors down in Virginia. I am so sad that they can't continue to treat me, but they'll always hold such a special place in my heart.
Phew! This entry was wicked long. (Fun fact, using wicked as an adjective is a RI/MA thing I think, just like coffee milk and Dels. )
Thursday, January 10, 2013
Resolutions, Shmesolutions.
There's this thing about resolutions that tends to really bug me. Everyone is all, "new year, new me!" "totally gonna lose all that weight this year!" or "listen to my outrageous resolutions, wooo!" and I'm all like, "dude, I just wanna keep my room clean."
Can you believe I wanted to start my entry like that? I've written about three different openings and none are sounding right. So I put that entry (above) on hold to look up my last few new years entries. Well, imagine my surprise when I couldn't find a single one! Jeez- talk about slacking. I could have sworn I wrote one about always promising to keep my room clean last year, but I probably wrote it in April, so I still couldn't find it. No big deal, moving on.
Happy New Year everyone! I've been reflecting on my resolutions this year, or rather the idea of resolutions. People seem to have this idea that with the turn of a new year, they can accomplish everything they've ever dreamed of doing for years. No, seriously, they're gonna do it, it's a new year. Motivation kicks in, they're on a roll and then Valentines day shows up with it's tiny messages printed on hard sugar, and love disguised as chocolate lumps in bright red heart boxes. And then America is all "What? we had resolutions? ARG!"
Wait, what do you mean this is just me?
Well, my point is I work hard every year to work towards some grand vision of what I want my life to be like in a few weeks, a few years even a few decades, regardless if I say it aloud in January or not. If I'm constantly working so hard to achieve this, why would I want to discredit myself and make a resolution to basically start over, and try to be more awesome this time around? I already am awesome. =) I think we get wrapped up in the idea of bigger, better, badder things - more more more. When really, this year I want to keep doing what I'm doing because it seems to be working.
In 2009 my goal was to get my lung function out of the 50's. Now, it's 2013 and I have managed to get it back into the 80's. I have never, in my wildest of dreams, thought that would be possible. 70's - yes, that was achievable in my mind, a lofty goal, but achievable. To be sitting here with 80% of my predicted lungs functioning? Well, I'm officially proud of myself. Go me. Whatever path I have stumbled upon I want to keep it up.
For 2013, I want to just keep going, keep living, and keep appreciating all the small things that I think tend to get overlooked. I want to live in the moment and savor the ordinary. I want to trust that by now, I know what I'm doing. I want to support, encourage, and appreciate others and really push myself to be more giving. I have been given so many wonderful opportunities and I am so thrilled at where I am in life for being 23. (Almost 24 at this point, darn, I've gotten start working on a new banner soon!)
For 2013 my resolution is to not make any resolutions. I know there are things I want to keep changing about my life, myself and even the world, but for right now, I'm just going to keep doing what I'm doing. Here's to not feeling guilty when Valentines rolls around and you've forgotten what your resolution was!
What's your resolution this year?
Can you believe I wanted to start my entry like that? I've written about three different openings and none are sounding right. So I put that entry (above) on hold to look up my last few new years entries. Well, imagine my surprise when I couldn't find a single one! Jeez- talk about slacking. I could have sworn I wrote one about always promising to keep my room clean last year, but I probably wrote it in April, so I still couldn't find it. No big deal, moving on.
Happy New Year everyone! I've been reflecting on my resolutions this year, or rather the idea of resolutions. People seem to have this idea that with the turn of a new year, they can accomplish everything they've ever dreamed of doing for years. No, seriously, they're gonna do it, it's a new year. Motivation kicks in, they're on a roll and then Valentines day shows up with it's tiny messages printed on hard sugar, and love disguised as chocolate lumps in bright red heart boxes. And then America is all "What? we had resolutions? ARG!"
Wait, what do you mean this is just me?
Well, my point is I work hard every year to work towards some grand vision of what I want my life to be like in a few weeks, a few years even a few decades, regardless if I say it aloud in January or not. If I'm constantly working so hard to achieve this, why would I want to discredit myself and make a resolution to basically start over, and try to be more awesome this time around? I already am awesome. =) I think we get wrapped up in the idea of bigger, better, badder things - more more more. When really, this year I want to keep doing what I'm doing because it seems to be working.
In 2009 my goal was to get my lung function out of the 50's. Now, it's 2013 and I have managed to get it back into the 80's. I have never, in my wildest of dreams, thought that would be possible. 70's - yes, that was achievable in my mind, a lofty goal, but achievable. To be sitting here with 80% of my predicted lungs functioning? Well, I'm officially proud of myself. Go me. Whatever path I have stumbled upon I want to keep it up.
For 2013, I want to just keep going, keep living, and keep appreciating all the small things that I think tend to get overlooked. I want to live in the moment and savor the ordinary. I want to trust that by now, I know what I'm doing. I want to support, encourage, and appreciate others and really push myself to be more giving. I have been given so many wonderful opportunities and I am so thrilled at where I am in life for being 23. (Almost 24 at this point, darn, I've gotten start working on a new banner soon!)
For 2013 my resolution is to not make any resolutions. I know there are things I want to keep changing about my life, myself and even the world, but for right now, I'm just going to keep doing what I'm doing. Here's to not feeling guilty when Valentines rolls around and you've forgotten what your resolution was!
What's your resolution this year?
Saturday, December 22, 2012
21 Drafts
21 Drafts! And no, I'm not talking about beer. Although that would be the most awesome bar if they had 21 different types of beer on draft. But I thought it was interesting that over a couple of months I have accumulated 21 drafts that just sit there, waiting.
Such a bummer I can usually never finish something I start. =D
That's all.
Such a bummer I can usually never finish something I start. =D
That's all.
Saturday, December 15, 2012
Upgrade - Downgrade: Hospital Style
Upgrade: No longer having to eat at 7 am, noon and 5pm. I'm digging the 'room-service' style meal plan. Call when you want to get your food, with pre-ordering as an option? Heck yes! I'll take it. Verdict: Upgrade! (The actual food? Well, that's a whole other story).
Downgrade: Ordering two IV's because I have more than 1 IV medicine. I've had the same IV cocktail for almost a decade. Never in my life have I been ordered to have 2 IV's at once. Luckily, the IV nurse saw my teeny-tiny baby veins and as she left go get a pediatric IV kit, she told them no way was she putting two in. Verdict: Downgrade. (Yay for awesome IV nurses.)
Upgrade: I have to get some blood drawn tonight for the initial 'in-patient' work up. A super awesome research assistant came by and offered to buy some extra blood fin the form of a 20 dollar Target giftcard. Well, by golly, sign me up. Target here I come! Verdict:Upgrade!
Downgrade: Having a 'heavy chest' from a lung infection is not the same as having cardiac chest pain. Unfortunately any note of "chest pain" qualifies you for 10 electrodes decorating your top half and 3 fun days of caring a mini EKG machine in your tank top. Hmmm. Verdict: Downgrade
Even though I'm back in the hospital, I managed to avoid this place for 18 whole months! Thats the longest I've gone since I've starting getting IV's at the age of 14. Thanks Kalydeco! =)
I also would like to point out that I don't feel nearly as sick as I usually do when I go in for a tune-up. I do feel that I need one, but I think Kalydeco has played a huge part in how I feel overall; which isn't half bad, all things considered.
So here's to putting your health first and using your vacation time to have a hospital stay-cation if you will. Hopefully this time invested here will keep me out of here for the next 18 monts, or perhaps, even 2 years. =D We'll see.
Downgrade: Ordering two IV's because I have more than 1 IV medicine. I've had the same IV cocktail for almost a decade. Never in my life have I been ordered to have 2 IV's at once. Luckily, the IV nurse saw my teeny-tiny baby veins and as she left go get a pediatric IV kit, she told them no way was she putting two in. Verdict: Downgrade. (Yay for awesome IV nurses.)
Upgrade: I have to get some blood drawn tonight for the initial 'in-patient' work up. A super awesome research assistant came by and offered to buy some extra blood fin the form of a 20 dollar Target giftcard. Well, by golly, sign me up. Target here I come! Verdict:Upgrade!
Downgrade: Having a 'heavy chest' from a lung infection is not the same as having cardiac chest pain. Unfortunately any note of "chest pain" qualifies you for 10 electrodes decorating your top half and 3 fun days of caring a mini EKG machine in your tank top. Hmmm. Verdict: Downgrade
Even though I'm back in the hospital, I managed to avoid this place for 18 whole months! Thats the longest I've gone since I've starting getting IV's at the age of 14. Thanks Kalydeco! =)
I also would like to point out that I don't feel nearly as sick as I usually do when I go in for a tune-up. I do feel that I need one, but I think Kalydeco has played a huge part in how I feel overall; which isn't half bad, all things considered.
So here's to putting your health first and using your vacation time to have a hospital stay-cation if you will. Hopefully this time invested here will keep me out of here for the next 18 monts, or perhaps, even 2 years. =D We'll see.
Monday, October 1, 2012
The butterfly Andrew gave me.
When I was about 5, I was spending half of my day in morning kindergarten and the other half playing in a sandbox at Andrew's house. His mother graciously agreed to watch me for the afternoons while my Mom juggled the fine line of being a great employee and finding enough family time.
Sometime in the next year Andrew and his family moved out of state and I moved onto full time first grade. One fall afternoon I learned that they were coming to visit us! I was giddy with excitement. Andrew and I always had so much fun playing together, we were such great playmates that we actually got 'married' with vows, rings, and cheering moms.
When their white mini van pulled onto our blacktop driveway, I raced for the front door! Andrew matched my speed and we met smile to smile only separated by a thin piece of glass; the front door. We hugged and said our hello's and we're about to run off to play when Andrew's mother reminded him that , "didn't he leave something special in the car?"
A grinning, freckled face Andrew cheerfully exclaimed that he had a present for me! Immediately visions of a pink Barbie box danced through my head, or even better Kitchen Littles. In less than a minute, I had created such high expectations through my own greediness that when I unwrapped a hand-drawn and masterfully colored picture of a butterfly, I was secretly devastated. Publicly I smiled, exclaimed I loved it, and put it in my room. Eventually my mom hung it on my wall.- my daily reminder.
For years I carried this memory around with me, and a subtle reminder of selfishness, disappointment, and learning to gracefully move on. To this day, reliving this memory still makes me painfully aware and even uncomfortable of my own personal greed. I struggle distinguishing between needs and wants. I was so wrapped up in my own personal greediness and pettiness that I couldn't fully appreciate what I was given; a gorgeous and heartfelt gesture. A beautiful picture that I could cherish for years. Instead, I was disappointed that they didn't give me a plastic doll with absurd proportions and too-tiny clothes.
For a very long time I kept that picture. When I moved away to Virginia, I believe I let that picture go. Although I may not have that picture anymore, I will always carry that memory and that humiliating lesson and how it made me grow as a person.
While I still have flaws, and I still struggle, I simply understand these things make us human. We can only expect to grow and learn and become better people. Today, I woke up on the wrong side of the bed grumbling about nothing. I was holding onto my selfish ideas that I had for the day, that the day wasn't delivering and I felt that same humiliating disappointment that I did way back when I was unwrapping that fragile picture. However it's days like today that I need to relive that memory in order to appreciate that it's all part of living. And I really, really like living.
Sometime in the next year Andrew and his family moved out of state and I moved onto full time first grade. One fall afternoon I learned that they were coming to visit us! I was giddy with excitement. Andrew and I always had so much fun playing together, we were such great playmates that we actually got 'married' with vows, rings, and cheering moms.
When their white mini van pulled onto our blacktop driveway, I raced for the front door! Andrew matched my speed and we met smile to smile only separated by a thin piece of glass; the front door. We hugged and said our hello's and we're about to run off to play when Andrew's mother reminded him that , "didn't he leave something special in the car?"
A grinning, freckled face Andrew cheerfully exclaimed that he had a present for me! Immediately visions of a pink Barbie box danced through my head, or even better Kitchen Littles. In less than a minute, I had created such high expectations through my own greediness that when I unwrapped a hand-drawn and masterfully colored picture of a butterfly, I was secretly devastated. Publicly I smiled, exclaimed I loved it, and put it in my room. Eventually my mom hung it on my wall.- my daily reminder.
For years I carried this memory around with me, and a subtle reminder of selfishness, disappointment, and learning to gracefully move on. To this day, reliving this memory still makes me painfully aware and even uncomfortable of my own personal greed. I struggle distinguishing between needs and wants. I was so wrapped up in my own personal greediness and pettiness that I couldn't fully appreciate what I was given; a gorgeous and heartfelt gesture. A beautiful picture that I could cherish for years. Instead, I was disappointed that they didn't give me a plastic doll with absurd proportions and too-tiny clothes.
For a very long time I kept that picture. When I moved away to Virginia, I believe I let that picture go. Although I may not have that picture anymore, I will always carry that memory and that humiliating lesson and how it made me grow as a person.
While I still have flaws, and I still struggle, I simply understand these things make us human. We can only expect to grow and learn and become better people. Today, I woke up on the wrong side of the bed grumbling about nothing. I was holding onto my selfish ideas that I had for the day, that the day wasn't delivering and I felt that same humiliating disappointment that I did way back when I was unwrapping that fragile picture. However it's days like today that I need to relive that memory in order to appreciate that it's all part of living. And I really, really like living.
Friday, September 14, 2012
4 minutes
Let's see how much updating I can do in 4 minutes. (The time I have until I need to get dressed for work).
1. 4 out of 6 people failed on Kyle's committee. We feel better because it wasn't just him. He'll take them again in January. It's still going to be a long semester, but we'll make it.
2. We had to buy a car. Kyle's car really started crapping out on us, and with his approaching birthday (and expiring license) he needed to get a MD License, to which his car wouldn't pass state inspection. We ended up doing a one-pay lease for a new prius-C. We are enamored.
3. Number 2 means we now have one more bill, yay car insurance! I think, besides medical, that was the last thing we needed to take over and now we're completely independent from our parents. Can't say the same for our older sisters though!
4. We got married! "married" Picture overload!!! First & last two are from our 'day after session' with a professional. Middle is infront of the ceremony nook I set up. We didn't end up using it since it was pouring when we started, but later it cleared up and we hopped in front for pictures.
1. 4 out of 6 people failed on Kyle's committee. We feel better because it wasn't just him. He'll take them again in January. It's still going to be a long semester, but we'll make it.
2. We had to buy a car. Kyle's car really started crapping out on us, and with his approaching birthday (and expiring license) he needed to get a MD License, to which his car wouldn't pass state inspection. We ended up doing a one-pay lease for a new prius-C. We are enamored.
3. Number 2 means we now have one more bill, yay car insurance! I think, besides medical, that was the last thing we needed to take over and now we're completely independent from our parents. Can't say the same for our older sisters though!
4. We got married! "married" Picture overload!!! First & last two are from our 'day after session' with a professional. Middle is infront of the ceremony nook I set up. We didn't end up using it since it was pouring when we started, but later it cleared up and we hopped in front for pictures.
And the most exciting news? We got kyle's test back and he isn't a carrier for any known CF mutation. Holla! But I have a weight goal before we even go there. Blah. 122 lbs. Thats 11 lbs I need to pack on. All in all, things are lookin' up!
Friday, August 31, 2012
Life, always kicking us while we're down.
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?
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?
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*
Friday, April 20, 2012
Haiku for you
haiku's for friday
fevered and hungry
too weak to go outside now
the fridge is empty
Oliver is good
positive thinking I've done
I still feel like crap
Lungs are so junky
my eyelids are drooping too
fever nap calls me
an hour later
I might start to feel better
if not I'll be mad
say a few choice words
to my failing body
stop being so darn sick!
tomorrow is soon
this vest better have paid off
to do list is big
my projects on hold
making health my number one
so I can live on.
Yup. Sums up my friday.
In quick other news, Spent a few hours figuring out an insurance debacle. Specialty pharmacy sent me tobi on automatic refill? Which messed up my cayston order. GRR so for someone else's mistake, I'm now paying the consequences. My oh my, nothing can be easy these days. On a positive note? I think I was able to fully resolve the issue and will have Cayston by next week. Hopefully this week of missing it can be corrected.
Thursday, April 19, 2012
Apples from the fruit bowl
This was another post I wrote a while ago but never published. but it perfectly reflects how I feel these days. I'm yet again without an inhaled antibiotic due to insurance, shortages, and goodness knows what else. Sigh.
-------------------------------------------------
I'm upset. I cheated myself and my body didn't give up on me.
For the past month I've been without inhaled antibiotics. Not by choice, oh no, not by choice. It's been one insurance snafu after the next, and we all know how long insurance snafus take to resolve themselves.
Knowing I was in it for the long haul I upped my commitment. I tried doing saline, extra vest. And it was great, for those few days. Perhaps even a week slipped by. But when all was said and done I cheated myself. I didn't put forth the effort that I deserve. That kyle deserves. That our future deserves and I'm embarrassed.
I went to clinic prepared. Mentally prepping myself for those low PFT's scores. Gearing up the speech to present to my disappointed family about how low pfts were expected. That it's no big deal. And yet my body, my fragile, brilliant, exuberant body took over and I blew a 70%. My fev1 went down .03 L which in the grand scheme of things is hardly a change.
I was ecstatic. Underneath the initial excitement, I felt guilt. Guilt that I wasn't honest, and I was taking credit for taking good care of myself. I hadn't. I wasn't. I'm not. And I am embarrassed.
------------------------------------------------
This happens quite frequently and I am getting tired of playing this game with myself. The guilty game.
I didn't have a great morning this morning. Oliver was really getting to me and I ended up freaking out on him when I found him on our dining room table eating apples out of the fruit bowl. On the table. Our almost 4 foot high table. Apples. Out of the fruit bowl. I freaked. He wasn't happy. I don't blame him I would have been upset if I was being freaked out on too. I was so unlike myself that I broke down. All I could think about was that terrible terrible time I once told my dying sister that no one could love her because she doesn't love herself. (This was when she was getting divorced from her 3 month husband. who was a douche by the way). That was such a dark time in my life. One where I intentionally hurt people, couldn't control my rage, and all in all was not nice. I wasn't happy. I was frustrated. I was hurt. And it scares me to think I went back to that.
I never want to go back to being in such a dark place. Oliver has since forgiven me for my freak out. Eventually I'll have to forgive myself. For now I'll use the experience as motivation to become a better doggie parent, and overall a better person.
I missed one med last night. I've been having crazy dreams and not sleeping well. I ended up being exhausted going to bed, and completely forgetting about it -- until the next morning. Sigh. These things happen. Try again. I don't want to cheat myself.
Tuesday, April 17, 2012
Win some, you lose some.
Yesterday I want to my gymnastics class where I really felt the effects of CF. As I was tumbling, head over feet, feet over hands, body up, around, and pray that I land - I noticed "I have no energy for this." I felt as if I weighed tripple my own weight. Every muscle in my body was tired. I was tired. And yet, I continued.
I didn't push myself very hard. I did only what I was comfortable doing. Making sure to rest and drink lots of water. It was still a nice class, and I enjoyed myself. When I was home I really noticed, CF is kicking my butt today. So to compensate I did an extra saline, and 15 extra vest minutes.
Well, today I pushed myself too hard. Oops. I went for a jog with Kyle and ended up twisting my ankle, on the leg with the already-sore-from-yesterday knee. Hobbling home, I decided it's the fact that I went out today. I might have been fine, if I hadn't stubbed my big toe, but I might have ened up pushing myself too far and really have regretted it.
For now, I can handle this sore ankle, and tender knee, knowing the benefits outweighed today's risks. I have decided to take it easy this week. I will not be going to my pole class on thursday in order to let my body heal up.
I've been trying to eat more calories lately. I've been really inspired by my friend. I've known her since we were 5 and we've been lifelong friends. She's recently on a healthy lifestyle change journey and she's really doing awesome in the first initial stages (which are always the hardest!) and so I've been thinking of her when I need that extra motivation.
Today not only did I eat breakfast, lunch, and second lunch, but I had 2 snacks and a scandishake! Take that body. Load up on them calories. Maybe I can start gaining some fat to these bones and look less like a freaky muscle builder when I brush my hair, and more like a well toned young lass.
Haven't missed a med in quite a few days. Extra motivation really helps. I'm also on some antibiotics over the next week and a half. I had been coughing up 'sick' tasting stuff and got on that asap. I'm starting to feel a bit better.
Perhaps if I were more motivated I could have found a topic for this post and really upped the writing skills. I was corrected yesterday at gymnastics for my 'poor english' haha. I said 'stretch out good!" instead of stretch out well... which I have to look up the usage again because I could have sworn good fit in that sentence. Eh, you win some, you lose some!
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