Have we ever just stopped and thought about how thankful we really aren't? I had that moment today.
We go about our daily lives not thinking twice. Wake up, shower, get dressed, go to work, come home, eat dinner, go to bed... wake up and do it all over again. It's so easy to get caught up in the things that are going wrong that we never stop to think about what's going right.
If you've visited this blog before, you know that my health is my greatest life challenge. If you're a newcomer-- welcome-- then know I have cystic fibrosis and it presents each day with a set of medicines, treatments, and choices that the "average Joe" doesn't deal with.
Today I "met" via Facebook another CFer through a CF group online. He's 35 and just had his first round of IV antibiotics for a lung exacerbation.
WOW.
My initial gut reaction was "You must be so healthy!!!" but thankfully, I stopped myself before sending that. I've been around the CF online community long enough to know that just because your lungs are clear doesn't mean the rest of your body is behaving.
"How does your CF manifest? Do you have other complications?"
"Digestion and liver issues. Acute liver failure."
Yikes.
Among other issues that I'll spare you the details, this guy has a laundry list of problems, complications, and surgery history that made me cringe.
"You must be so healthy!!!" seemed like a ridiculous response now. I was so grateful I didn't send it.
But what it did make me do what stop and reflect on my own life and how thankful I haven't been but certainly should be.
I was last hospitalized December 2014. I recently had my wisdom teeth out with zero complications and barely any weight lost. No, I'm not the healthiest person out there, but I can hold a full-time job and enjoy hobbies, social events, and date nights without thinking twice.
I am so thankful for my health.
Bet you didn't see that one coming. I sure didn't. But today was another friendly reminder that while we all have struggles and trials, we should definitely be thankful for the things in our life that are going well. I know I sure am.
-ARJ
Tuesday, June 6, 2017
Monday, April 18, 2016
A little redneck ingenuity saved the day...
So on a fairly regular basis, I travel for soccer. I coach some high-school aged girls on a club travel team and we travel the state, and a few neighboring states as well, on the weekends. Sometimes Andrew joins me, but not always. This weekend, he came down to the state capital with me because we had plenty of time to kill between games (8am on Saturday and 1pm on Sunday) and I wanted to spend it with him! And boy am I glad...
We got to the hotel on Friday around 8pm. Andrew left to go get food and we munched in the room while watching TV. Around 9:35 I'm getting ready for bed and to start treatment since I have an early morning (need to be at the fields by 7am). I unpack my travel machine and my heart stops.... I have no tubing. Suddenly, my chest feels tight and I don't know what I'm going to do. Andrew was very quick to step up and remind me that he will find a solution and it's his job to take care of me. He put his shoes back on and left without hesitation.
He started driving towards the nearest Walgreens and I called the other one in town (we're actually in a town outside the capital). Time stamp: 9:43pm. They tell me the pharmacy is closed and they don't have what I'm looking for. I begin to cry and ask them if there's any other place they can think of that might carry it. They suggest Walmart. I'm texting Andrew to let him know. Little did I know, he was on the phone with his dad (a nurse) who directed him to Walmart for other reasons...
I call the local Walmart and sob to the nice girl on the phone. She said the pharmacy closed at 8pm, but she will go look outside of the pharmacy... no luck. We talk for awhile and she is starting to freak out with me, understanding the severity of the situation. Her advice was to go to the hospital and ask for one. I thanked her and called Andrew. He was walking into Walmart that moment, but wasn't heading to the pharmacy. He was headed to the aquarium section!! After some time, he returns to the hotel with these items:
25 ft. Aquarium tubing (what pumps air into fish tanks)
Zip-ties
A pack of lighters
A pair of scissors
He cut the tubing to make it a manageable length. We rinsed it out through the sink too. The tubing was just a little too small to fit on the compressor/neb so we used the lighters to soften the tubing and stretch it out with the hotel pen. Then, when it wouldn't stay on the neb, we put a zip-tie around it so it wouldn't go anywhere. With a little bit of Redneck Ingenuity (or Macgyver!), I was able to do treatment that night/early morning.
The next morning, we called a local pharmacy and bought actual compressor tubing, but hear me out friends: should you ever run into a bind like I did, just pick up those items at Walmart and you'll get through the night!
Pics for proof:
We got to the hotel on Friday around 8pm. Andrew left to go get food and we munched in the room while watching TV. Around 9:35 I'm getting ready for bed and to start treatment since I have an early morning (need to be at the fields by 7am). I unpack my travel machine and my heart stops.... I have no tubing. Suddenly, my chest feels tight and I don't know what I'm going to do. Andrew was very quick to step up and remind me that he will find a solution and it's his job to take care of me. He put his shoes back on and left without hesitation.
He started driving towards the nearest Walgreens and I called the other one in town (we're actually in a town outside the capital). Time stamp: 9:43pm. They tell me the pharmacy is closed and they don't have what I'm looking for. I begin to cry and ask them if there's any other place they can think of that might carry it. They suggest Walmart. I'm texting Andrew to let him know. Little did I know, he was on the phone with his dad (a nurse) who directed him to Walmart for other reasons...
I call the local Walmart and sob to the nice girl on the phone. She said the pharmacy closed at 8pm, but she will go look outside of the pharmacy... no luck. We talk for awhile and she is starting to freak out with me, understanding the severity of the situation. Her advice was to go to the hospital and ask for one. I thanked her and called Andrew. He was walking into Walmart that moment, but wasn't heading to the pharmacy. He was headed to the aquarium section!! After some time, he returns to the hotel with these items:
25 ft. Aquarium tubing (what pumps air into fish tanks)
Zip-ties
A pack of lighters
A pair of scissors
He cut the tubing to make it a manageable length. We rinsed it out through the sink too. The tubing was just a little too small to fit on the compressor/neb so we used the lighters to soften the tubing and stretch it out with the hotel pen. Then, when it wouldn't stay on the neb, we put a zip-tie around it so it wouldn't go anywhere. With a little bit of Redneck Ingenuity (or Macgyver!), I was able to do treatment that night/early morning.
The next morning, we called a local pharmacy and bought actual compressor tubing, but hear me out friends: should you ever run into a bind like I did, just pick up those items at Walmart and you'll get through the night!
Pics for proof:
Neb with tubing and a zip-tie to keep it in place.
The aquarium tubing Andrew bought
Very thankful for my creative and quick-thinking father-in-law and my husband who is willing to do anything to keep me well!
-A
Thursday, March 10, 2016
Afflovest-- my opinion
Since I'm rocking some newer hardware, I felt I should give my honest opinion of it. Please know a few things: 1- no one is paying me for this. 2- My opinion is just for information. I do not have a medical license and my opinion should not affect you or your health decisions. 3- What may be right or wrong might not be for you. Please get with your clinic before making any changes.
Here we go!
AffloVest
Basic description: This is another "vest" chest percussion device. It houses the controller on the user's left side in a pocket and the battery on the user's right side in another pocket. I have a size "small" and it has 3 adjustable clips in the front to latch it. It also has several (4 or 5) two-button adjustments in the shoulders to fit the correct length. To put simply, it is cordless.
How it works: With a charged battery (which lasts approximate 3 hours of usage), the vest is turned on by holding down the button with the symbol for ON (one you often see on computers). It will boot up over about 5 full seconds. From there you can run the set program by pressing GO or run whatever setting has been left up by pressing the PLAY button.
You can set a program by using the down arrow until you select Program. This will bring you to a screen to edit the three Sequences it will cycle through on your program. I like this because it allows me to set different types of therapy without having to think about it. Each Sequence can run for a max of 15 minutes.
What the buttons mean:
P- Percussion. This setting vibrates for 1 second on, one second off for the full run time. This is my favorite setting.
V- Vibration. This is a solid vibration for the full run time.
D- Drainage. This targets the lower lobes first, alternating front and back, and vibrates up in different areas. The idea seems to be to knock crud loose and work it upwards. I bet this is even more effective when the user is in a downward facing drainage posture.
Three bars: High intensity
Two bars: Medium intensity
One bar: Low intensity
Your mode and intensity can be adjusted at any point during the therapy session. I saw a "lock" symbol when I set a program, which makes me wonder if it can be locked for kids so they don't change it up. I haven't opened the flashdrive they sent with instructions, so I don't know for sure.
What's included:
When you get the Afflovest, you get a roller storage bag, the vest with connected controller, one large battery, a battery charger, and a wall cord. The batter charger plugs directly into the wall and the battery to charge it. The Vest cannot be used during this time. They do have a wall cord though. This can be plugged directly into the wall and the vest for usage when your battery is dead and you really need it. Obviously, you're bound to the wall at this point, but isn't that what we're all used to anyway? The cord is fairly long so you can sit on a chair or couch. They also include a flashdrive of information. I have yet to open it.
Now the part you've really been waiting for... Pros and Cons
Pros:
-I love the freedom. I love being able to walk around, cook dinner, dry my hair, put on makeup, etc. while I do my therapy. The vibrations are different than a typical air-filled vest, so it's not as violent to the entire body. The vibrations seem deeper and more focused than the air-filled vests, which seem to just try to shake things up without understanding the concept of directional vibrations.
-I like the ease of being able to set the program. I'm pretty tech savvy but I always struggled with the other vests to set cycles. I just ran my time on my one setting and that was it. Now, I feel like I have more freedom with my therapy.
-It works. I'm clearing up some crud. I can feel it makes a huge difference in my day. That's what matters the most in the end, right?
Cons:
-It's heavier than I anticipated. Mine is 11lbs with the battery. Sometimes that's hard for me to put on, or I become winded putting it on, but once it's on it's fine.
-The battery doesn't warn you it's low unless you're looking at it. It just flashes. I haven't had it die on me yet, but I'm sure it will eventually!
-I wish the programs could run longer than 15 minutes, but that's just me being picky.
-This pairs with the weight, but I expected it to be easier to carry with me when I travel. It's still easier than the other Vest, but it's just not what I expected. I'm used to the flimsy vest that I could fold up and pack away (though paired with a big machine), but the Afflovest has the machine built in, so it doesn't fold or pack away as easy as I had hoped. Again, still easier than other options.
-For flyers: it has a lithium battery so the battery cannot be checked. It will have to be a carried with you.
I hope this helps!
-A
Here we go!
Basic description: This is another "vest" chest percussion device. It houses the controller on the user's left side in a pocket and the battery on the user's right side in another pocket. I have a size "small" and it has 3 adjustable clips in the front to latch it. It also has several (4 or 5) two-button adjustments in the shoulders to fit the correct length. To put simply, it is cordless.
How it works: With a charged battery (which lasts approximate 3 hours of usage), the vest is turned on by holding down the button with the symbol for ON (one you often see on computers). It will boot up over about 5 full seconds. From there you can run the set program by pressing GO or run whatever setting has been left up by pressing the PLAY button.
You can set a program by using the down arrow until you select Program. This will bring you to a screen to edit the three Sequences it will cycle through on your program. I like this because it allows me to set different types of therapy without having to think about it. Each Sequence can run for a max of 15 minutes.
What the buttons mean:
P- Percussion. This setting vibrates for 1 second on, one second off for the full run time. This is my favorite setting.
V- Vibration. This is a solid vibration for the full run time.
D- Drainage. This targets the lower lobes first, alternating front and back, and vibrates up in different areas. The idea seems to be to knock crud loose and work it upwards. I bet this is even more effective when the user is in a downward facing drainage posture.
Three bars: High intensityTwo bars: Medium intensity
One bar: Low intensity
Your mode and intensity can be adjusted at any point during the therapy session. I saw a "lock" symbol when I set a program, which makes me wonder if it can be locked for kids so they don't change it up. I haven't opened the flashdrive they sent with instructions, so I don't know for sure.
What's included:
When you get the Afflovest, you get a roller storage bag, the vest with connected controller, one large battery, a battery charger, and a wall cord. The batter charger plugs directly into the wall and the battery to charge it. The Vest cannot be used during this time. They do have a wall cord though. This can be plugged directly into the wall and the vest for usage when your battery is dead and you really need it. Obviously, you're bound to the wall at this point, but isn't that what we're all used to anyway? The cord is fairly long so you can sit on a chair or couch. They also include a flashdrive of information. I have yet to open it.Now the part you've really been waiting for... Pros and Cons
Pros:
-I love the freedom. I love being able to walk around, cook dinner, dry my hair, put on makeup, etc. while I do my therapy. The vibrations are different than a typical air-filled vest, so it's not as violent to the entire body. The vibrations seem deeper and more focused than the air-filled vests, which seem to just try to shake things up without understanding the concept of directional vibrations.
-I like the ease of being able to set the program. I'm pretty tech savvy but I always struggled with the other vests to set cycles. I just ran my time on my one setting and that was it. Now, I feel like I have more freedom with my therapy.
-It works. I'm clearing up some crud. I can feel it makes a huge difference in my day. That's what matters the most in the end, right?
Cons:
-It's heavier than I anticipated. Mine is 11lbs with the battery. Sometimes that's hard for me to put on, or I become winded putting it on, but once it's on it's fine.
-The battery doesn't warn you it's low unless you're looking at it. It just flashes. I haven't had it die on me yet, but I'm sure it will eventually!
-I wish the programs could run longer than 15 minutes, but that's just me being picky.
-This pairs with the weight, but I expected it to be easier to carry with me when I travel. It's still easier than the other Vest, but it's just not what I expected. I'm used to the flimsy vest that I could fold up and pack away (though paired with a big machine), but the Afflovest has the machine built in, so it doesn't fold or pack away as easy as I had hoped. Again, still easier than other options.
-For flyers: it has a lithium battery so the battery cannot be checked. It will have to be a carried with you.
I hope this helps!
-A
Saturday, February 27, 2016
One Year in our New Home!
Just thought I'd share really quickly-- we've closed on our house a year ago today! Since then, we've made several positive changes (remodeled a bathroom, painted rooms, rebuilt a cabinet, etc.) and I'm very happy with where we are in our lives.
New challenges as we continue to move forward? Paying for medicines... but that will be another post for another day. Thankful for resources and a mom who is doing a lot of leg-work for me.
Have a wonderful weekend!
-A
New challenges as we continue to move forward? Paying for medicines... but that will be another post for another day. Thankful for resources and a mom who is doing a lot of leg-work for me.
Have a wonderful weekend!
-A
Saturday, February 13, 2016
New Vest!
Some of you have been with me long enough to remember this post about my Vest, where I gave it some love. My more recent friends might only remember this other post about my Vest where I wasn't sure if we were friends or not. Either way, my Vest was always around giving me grief and giving me clear lungs. But now, I can retire it because it's time to make room for a new Vest... the Afflovest! There's no question: we're already BFFs. When I learned that this Vest might be a real option (around October 2015), it was already a part of my day. I thought about it LITERALLY every morning. Any day that I overslept and didn't have time for a morning Vest sesh, I thought about how I could at least get in 10 minutes of the Afflovest while I dry my hair and let the dog out.
If you haven't heard of it, I recommend checking out their website and the YouTube videos posted by people who got the Vest and are demoing it. The biggest advantage that it brings is I'm not hooked up to vacuum cleaner hoses, but free to walk around with the cordless technology! It doesn't use air, like the old Vests do, but more true vibrations. It has 3 settings, Vibration, Drainage, and Percussion (my favorite). Anyway, not trying to do a promo for them, but I had to share in my excitement. I mean look at me! I've never been so happy to wear a Vest!
In other news, not much else has changed. Soccer season just picked back up, I'm singing in the adult choir at church (as I have time), and Zoe is still obsessed with the ball.
Oh! One thing I did was sign up for the Rock CF Kick Backs program. It's an awesome group of people who, as part of the Rock CF Foundation, provide new tennis shoes to CFers who want to get running or need a new pair from running so much! It's a really awesome program and I was THRILLED to get my tennis shoes. Got to keep working hard to stay healthy!
Have a great weekend and a Happy Valentines Day!
-Annie
If you haven't heard of it, I recommend checking out their website and the YouTube videos posted by people who got the Vest and are demoing it. The biggest advantage that it brings is I'm not hooked up to vacuum cleaner hoses, but free to walk around with the cordless technology! It doesn't use air, like the old Vests do, but more true vibrations. It has 3 settings, Vibration, Drainage, and Percussion (my favorite). Anyway, not trying to do a promo for them, but I had to share in my excitement. I mean look at me! I've never been so happy to wear a Vest!
In other news, not much else has changed. Soccer season just picked back up, I'm singing in the adult choir at church (as I have time), and Zoe is still obsessed with the ball.
Oh! One thing I did was sign up for the Rock CF Kick Backs program. It's an awesome group of people who, as part of the Rock CF Foundation, provide new tennis shoes to CFers who want to get running or need a new pair from running so much! It's a really awesome program and I was THRILLED to get my tennis shoes. Got to keep working hard to stay healthy!
Have a great weekend and a Happy Valentines Day!
-Annie
Monday, September 7, 2015
Overdue update
Well hello world! It's been about two years since I've updated ... shame on me! However, life has been busy, exciting, and I owe you an update. Let's see if I can recap all that has happened.
Before I get there though: one of the reasons I stopped blogging was for fear of losing my job due to my "public" notices regarding my health. That can't be any further from the truth at my job. Not only is the company I work for supportive and caring, but the office I work in makes sure I am taking care of myself so I can continue to do my job to the best of my ability. It's also a perk that our campus is 100% non-smoking. No longer concerned!
Pics at the END of the post, some of them semi-graphic/gross blister pics-- just as a warning!!
HEALTH UPDATES:
Let's get the boring health updates out of the way first. Then we can move on to life!
-Overall, doing well.
-Hospitalized summer of 2013. Rashes, blisters, the usual. I remember my dressing having to be changed multiple times, even in one day. Definitely NOT fun.
-Hospitalized late December of 2014, which of course is always no fun, especially around Christmas time. Instead of the typical PICC, I got a midline to see if that would prevent the itching/blisters (see HERE for what I'm referencing). I also prepped ahead of time by working with my father-in-law (what?! I'll get there) who was in contact with a 3M rep and got me samples of different dressings/tapes, etc. A huge THANK YOU to the rep and 3M because what I did use was much nicer on my skin than what the hospital provides. They also recently (in the last year or so) changed what PICCs are made out of, but I still went with a Midline. Result: no major rashes and no blisters at all. We changed a lot of things from the last visit, but it worked. I can't say I like the Midline over the PICC though. My line wouldn't draw blood so they had to set another IV very carefully in that arm to draw levels. The Midline was much easier to put in though. I'll have to make a decision for next go-around, whenever that may be.
-My CF doc and primary NP level the clinic. It wasn't anything major political so everyone parted ways on good terms, but I'm sure going to miss them! I go back to my clinic in Nov. to meet the interim doctor, so we'll see how that goes.
MAJOR LIFE UPDATES:
This is really what you've been waiting for anyways, right?
-11/9/2013: Andrew proposed to me. It was as low key and sweet as I could have hoped for. Long story short, we spent the weekend in our college town with some friends to watch a football game and see our bricks in the Alumni Walkway. Sunday morning before we went back home, we went to a park that we took walks in back in college. He took me to a bench and proposed. He was so nervous and it was precious. Little sister Morgan was there to take pictures, of course, creeping from the bushes. The whole thing was precious and apparently everyone knew ahead of time except me! My parents were just waiting for me call at home, watching the clock. I knew I didn't want the wedding to be far away so we called our wedding planner and set a few temporary dates. Final date was set a few days later when we found out venue availability: March 29, 2014.
-During the short time between proposal and wedding, it's a blur. An absolute wedding-planning filled blur. My mom, who was not working at the time, did so much of the leg-work while I was sitting in the office. There wasn't a single day that went by that wasn't at least partially dedicated to the wedding. Without my mom, this wedding would not have been as perfect as it was.
-3/29/14: My wedding day! It was held In the Round and couldn't have been more beautiful and perfect. It was exactly what I wanted, dreamed about, and we worked to bring it to life. So many special people helped pull it off (music, flowers, etc.) and we were surrounded by ~300 friends/family to help us celebrate. It was wonderful. And most importantly.. I'm married to my best friend and better half.
-Soon after that we had a little one... a FLUFFY ONE! We got a Maltese puppy who we named Zoe
and she is a handful. She was born 3/13/14 and she is a WILD ONE. Stubborn, smart, and incredibly agile and athletic, she keeps me on my toes. Couldn't have asked for a funnier pup with a bigger personality though.. she's a mess!
-Andrew and I lived in a rented townhouse for about a year. He lived there since Oct 2013 and I moved in after our honeymoon cruise. On February 27, 2015, we closed on a home!
-Current status: Andrew and a friend are remodeling our hall bathroom. It's very loud, but I'm going back to work tomorrow (Happy Labor Day!) so I won't be here to listen to it.
RANDOM OTHER UPDATES:
Other things I feel like mentioning
-Andrew shot his finger with a nail gun. I have a pic (see below) and it was a big deal for a little while. He's got almost full ROM back now thankfully. When the cold weather picks back up, we'll see if it still hurts him.
-I'm coaching soccer! Last year (Oct 14-May 15) I assisted with a U14 girls team through our local soccer club. They were also RPL (Regional Premier League) so we traveled a good bit. This year, I'm assisting with a U17 girls team.
-We did a Spartan Race! It was held in Austin, TX, in early November 2014. Our team was me, Andrew, both of my brothers, and one of my sis-in-laws. It was hard work but a lot of fun! I posted some before/after pics below.
-I went to Vegas in Aug 2013 with little sister Morgan to celebrate her 21st birthday! Since then she went a grew up on me. She just completed her Masters Degree in Dublin, Ireland, and has since found a full-time job over there. I'm incredibly proud, but miss her TONS. She just came back to visit for a bit.. yay!!
I think that's all for today! Pictures below... sorry for the major gap!
Thanks for catching up with me!
-A
Before I get there though: one of the reasons I stopped blogging was for fear of losing my job due to my "public" notices regarding my health. That can't be any further from the truth at my job. Not only is the company I work for supportive and caring, but the office I work in makes sure I am taking care of myself so I can continue to do my job to the best of my ability. It's also a perk that our campus is 100% non-smoking. No longer concerned!
Pics at the END of the post, some of them semi-graphic/gross blister pics-- just as a warning!!
HEALTH UPDATES:
Let's get the boring health updates out of the way first. Then we can move on to life!
-Overall, doing well.
-Hospitalized summer of 2013. Rashes, blisters, the usual. I remember my dressing having to be changed multiple times, even in one day. Definitely NOT fun.
-Hospitalized late December of 2014, which of course is always no fun, especially around Christmas time. Instead of the typical PICC, I got a midline to see if that would prevent the itching/blisters (see HERE for what I'm referencing). I also prepped ahead of time by working with my father-in-law (what?! I'll get there) who was in contact with a 3M rep and got me samples of different dressings/tapes, etc. A huge THANK YOU to the rep and 3M because what I did use was much nicer on my skin than what the hospital provides. They also recently (in the last year or so) changed what PICCs are made out of, but I still went with a Midline. Result: no major rashes and no blisters at all. We changed a lot of things from the last visit, but it worked. I can't say I like the Midline over the PICC though. My line wouldn't draw blood so they had to set another IV very carefully in that arm to draw levels. The Midline was much easier to put in though. I'll have to make a decision for next go-around, whenever that may be.
-My CF doc and primary NP level the clinic. It wasn't anything major political so everyone parted ways on good terms, but I'm sure going to miss them! I go back to my clinic in Nov. to meet the interim doctor, so we'll see how that goes.
MAJOR LIFE UPDATES:
This is really what you've been waiting for anyways, right?
-11/9/2013: Andrew proposed to me. It was as low key and sweet as I could have hoped for. Long story short, we spent the weekend in our college town with some friends to watch a football game and see our bricks in the Alumni Walkway. Sunday morning before we went back home, we went to a park that we took walks in back in college. He took me to a bench and proposed. He was so nervous and it was precious. Little sister Morgan was there to take pictures, of course, creeping from the bushes. The whole thing was precious and apparently everyone knew ahead of time except me! My parents were just waiting for me call at home, watching the clock. I knew I didn't want the wedding to be far away so we called our wedding planner and set a few temporary dates. Final date was set a few days later when we found out venue availability: March 29, 2014.
-During the short time between proposal and wedding, it's a blur. An absolute wedding-planning filled blur. My mom, who was not working at the time, did so much of the leg-work while I was sitting in the office. There wasn't a single day that went by that wasn't at least partially dedicated to the wedding. Without my mom, this wedding would not have been as perfect as it was.
-3/29/14: My wedding day! It was held In the Round and couldn't have been more beautiful and perfect. It was exactly what I wanted, dreamed about, and we worked to bring it to life. So many special people helped pull it off (music, flowers, etc.) and we were surrounded by ~300 friends/family to help us celebrate. It was wonderful. And most importantly.. I'm married to my best friend and better half.
-Soon after that we had a little one... a FLUFFY ONE! We got a Maltese puppy who we named Zoe
and she is a handful. She was born 3/13/14 and she is a WILD ONE. Stubborn, smart, and incredibly agile and athletic, she keeps me on my toes. Couldn't have asked for a funnier pup with a bigger personality though.. she's a mess!
-Andrew and I lived in a rented townhouse for about a year. He lived there since Oct 2013 and I moved in after our honeymoon cruise. On February 27, 2015, we closed on a home!
-Current status: Andrew and a friend are remodeling our hall bathroom. It's very loud, but I'm going back to work tomorrow (Happy Labor Day!) so I won't be here to listen to it.
RANDOM OTHER UPDATES:
Other things I feel like mentioning
-Andrew shot his finger with a nail gun. I have a pic (see below) and it was a big deal for a little while. He's got almost full ROM back now thankfully. When the cold weather picks back up, we'll see if it still hurts him.
-I'm coaching soccer! Last year (Oct 14-May 15) I assisted with a U14 girls team through our local soccer club. They were also RPL (Regional Premier League) so we traveled a good bit. This year, I'm assisting with a U17 girls team.
-We did a Spartan Race! It was held in Austin, TX, in early November 2014. Our team was me, Andrew, both of my brothers, and one of my sis-in-laws. It was hard work but a lot of fun! I posted some before/after pics below.
-I went to Vegas in Aug 2013 with little sister Morgan to celebrate her 21st birthday! Since then she went a grew up on me. She just completed her Masters Degree in Dublin, Ireland, and has since found a full-time job over there. I'm incredibly proud, but miss her TONS. She just came back to visit for a bit.. yay!!
I think that's all for today! Pictures below... sorry for the major gap!
2013 Hospital Blister pics
Weekend of the Proposal!!
Spartan Race Nov. 2013
Wedding!!!
Zoe joins the Family!
Midline
Andrew's Injury
New Home/Car
Morgan comes to visit!!
Construction has begun..
Thanks for catching up with me!
-A
Monday, April 22, 2013
I spoke too soon.. Vertex update
http://www.xconomy.com/boston/2013/04/18/vertex-pharmaceuticals-booms-on-cystic-fibrosis-combo-drug-study/
This is a great article. It explains things relatively simply (maybe only mildly because I understand the lingo) and touches on everything from the stock jump to the study results.
I'm pleased. Yes, just pleased. I'm petrified. But ecstatic.
Did you watch Zero Dark Thirty? At the end of the movie, when the red haired lady was in the plane and had accomplished her goal that it took most of her career to do, what did she do? She cried. The thought running through her head is "Now what?" That's the best way to describe finding a cure. Now what? Everyone is always saying "be excited! Live your life! You have a cure, or something so close to it!" And that's more amazing than I could ever describe in words, but I've literally wanted a cure since I was old enough to understand what was going on... so then what? It's ok if you don't get it. You don't have to. But I do.
However don't mistake this feeling for disappointment or unhappiness because it is the total opposite. I couldn't be happier. But I'm terrified. Just know that.
-A
This is a great article. It explains things relatively simply (maybe only mildly because I understand the lingo) and touches on everything from the stock jump to the study results.
I'm pleased. Yes, just pleased. I'm petrified. But ecstatic.
Did you watch Zero Dark Thirty? At the end of the movie, when the red haired lady was in the plane and had accomplished her goal that it took most of her career to do, what did she do? She cried. The thought running through her head is "Now what?" That's the best way to describe finding a cure. Now what? Everyone is always saying "be excited! Live your life! You have a cure, or something so close to it!" And that's more amazing than I could ever describe in words, but I've literally wanted a cure since I was old enough to understand what was going on... so then what? It's ok if you don't get it. You don't have to. But I do.
However don't mistake this feeling for disappointment or unhappiness because it is the total opposite. I couldn't be happier. But I'm terrified. Just know that.
-A
Thursday, March 7, 2013
Long time, I see.
In reference to the post below, I still haven't seen the results. It's been almost a year. I still remember that day-- I curled up on the floor of my apartment and cried. I should have remembered that science takes forever. Not their fault, I understand that. I just should have known to not count those chickens just yet.
Hello world! I don't post much for a few reasons but primarily because I grew tired of it. Occasionally, like today, I'll decide the posting isn't sure a tough thing to do. It's nice to be heard every so often. I do have a second "blog" for my personal thoughts and feelings. Things that don't need to be shared with the world around me.
I also don't post as often because a lot has changed in 10 months (shocking, right??). I moved home in June of 2012 and finished out college commuting back to my college town. I also took a few classes from home and held an internship at a local gym for the final two quarters of college. Then, on Nov. 17, 2012, I graduated college early by two quarters. *high fives all around* Backing that time-table up about a month, I also started a "big girl job" in mid-October. After I graduated, I went on a graduation cruise with my mom, and began working full time (8-5, M-F) the Monday I came back from my cruise. Very exciting, very busy.
I also shifted away from the blogging world with my new job because, like a fellow blogger (Unknown Cystic), I don't want to put my career in jeopardy just because of my health. The internet is an incredible thing, but has the potential to ruin lives.
I also recently turned down the chance to be a local "face of CF" as a part of a really great fundraiser locally. I've supported and attended the gala they host when I'm able to, but this would have made me the key speaker and face in the media. I was all for it until I was employed. I'm sorry, but I just can't. I was a recent speaker with my mom on the Mother/Daughter Perspective of CF for local CF families hosted by my clinic. It was a great event and we had fun doing it. It's on YouTube.
Speaking of YouTube, my work did a Harlem Shake video. We're the first in our industry to do one and the other companies got called out by observers. It was tons of fun.
Ironically, after noting that I would like to keep my job despite my genes, I'm home sick today. It's the first full day I've taken off for feeling UGH. Remember all that belly pain I've had since late elementary school? It still haunts me. I actually had a recent colonoscopy to see what was wrong. Verdict? "You have a normal colon. Nothing is wrong with you." WRONG. Just because we can't see or determine the problem does not mean nothing is wrong. The highly respected doctor who performed the colonoscopy suggested it might be my diet. I mentioned this to my CF doctor who scoffed. "Doubtful." Still back on square one, in pain and still "nothing wrong."
For the record, I cried before my colonoscopy many times. Was I afraid? Was I in a lot of pain? No and no. I was HUNGRY. I was waiting for them to put me to sleep and tears are running down my cheeks. The nurses were great and worked to console me letting me know that there is nothing to fear and it will all be over soon. I just looked at them through my teary eyes and said "I'm not afraid, I'm hungry. I just really want to eat." I'm not sure they quite knew what to do with me.
Think about it! I couldn't eat for 24 hours. ME. Or drink Dr. Pepper. ME!! I had a lot of juices to choke down the solution to "clear me out." I got so physically sick of sweet drinks that I started sucking on the cajun sweet pickles that my mom makes at Christmas time for some spice. Sad, I know.
Recent doctor visit revealed that I would benefit from some IV antibiotics, but it wasn't an emergency. I made a deal that she let me wait 6 weeks and be reevaluated because I was beginning playing soccer again and running once more. I was making a serious effort to improve my cardiorespiratory health and I wanted to see if that would help before we made any decision to send me to the hospital. I've been running every day since.
My running partner, aka the boyfriend, has been great. When our work schedules allow us to run together, he meets me at the gym closest to me and we run. He gives me the push to keep going without pushing me to a breaking point. I've also lost several pounds over the last few months and he's declared that I'm going to eat as much as he does, if not more. We'll see how that works out!
Speaking of the boyfriend, all is well in that department. ("well" is the understatement of the century, actually.) We're extremely happy and things just make sense. It's nice when your best friend is also your boyfriend. :)
Speaking of friends, one of them (aka Emmons) is turning 21 in August and someone in her family got the great idea to have a serious celebration... IN VEGAS. Come late August I will be flying out with her family for a 21st birthday party in Sin City. I'm sure there's nothing that can go wrong.. haha!
Two of my other close friends are getting married in November.. on the same day... in different cities! Bummer! I'm very excited for them both and can't wait to celebrate with them!
On that note, I think that's all the updates I've got so far. Well, I'm sure there are plenty more, but that's all I've got for today. One more reason I don't blog, before I forget: I spend all day at work at a computer. I really don't want to get on my home computer once I leave. It's just not appealing to me.
Ciao.
Hello world! I don't post much for a few reasons but primarily because I grew tired of it. Occasionally, like today, I'll decide the posting isn't sure a tough thing to do. It's nice to be heard every so often. I do have a second "blog" for my personal thoughts and feelings. Things that don't need to be shared with the world around me.
I also don't post as often because a lot has changed in 10 months (shocking, right??). I moved home in June of 2012 and finished out college commuting back to my college town. I also took a few classes from home and held an internship at a local gym for the final two quarters of college. Then, on Nov. 17, 2012, I graduated college early by two quarters. *high fives all around* Backing that time-table up about a month, I also started a "big girl job" in mid-October. After I graduated, I went on a graduation cruise with my mom, and began working full time (8-5, M-F) the Monday I came back from my cruise. Very exciting, very busy.
I also shifted away from the blogging world with my new job because, like a fellow blogger (Unknown Cystic), I don't want to put my career in jeopardy just because of my health. The internet is an incredible thing, but has the potential to ruin lives.
I also recently turned down the chance to be a local "face of CF" as a part of a really great fundraiser locally. I've supported and attended the gala they host when I'm able to, but this would have made me the key speaker and face in the media. I was all for it until I was employed. I'm sorry, but I just can't. I was a recent speaker with my mom on the Mother/Daughter Perspective of CF for local CF families hosted by my clinic. It was a great event and we had fun doing it. It's on YouTube.
Speaking of YouTube, my work did a Harlem Shake video. We're the first in our industry to do one and the other companies got called out by observers. It was tons of fun.
Ironically, after noting that I would like to keep my job despite my genes, I'm home sick today. It's the first full day I've taken off for feeling UGH. Remember all that belly pain I've had since late elementary school? It still haunts me. I actually had a recent colonoscopy to see what was wrong. Verdict? "You have a normal colon. Nothing is wrong with you." WRONG. Just because we can't see or determine the problem does not mean nothing is wrong. The highly respected doctor who performed the colonoscopy suggested it might be my diet. I mentioned this to my CF doctor who scoffed. "Doubtful." Still back on square one, in pain and still "nothing wrong."
For the record, I cried before my colonoscopy many times. Was I afraid? Was I in a lot of pain? No and no. I was HUNGRY. I was waiting for them to put me to sleep and tears are running down my cheeks. The nurses were great and worked to console me letting me know that there is nothing to fear and it will all be over soon. I just looked at them through my teary eyes and said "I'm not afraid, I'm hungry. I just really want to eat." I'm not sure they quite knew what to do with me.
Think about it! I couldn't eat for 24 hours. ME. Or drink Dr. Pepper. ME!! I had a lot of juices to choke down the solution to "clear me out." I got so physically sick of sweet drinks that I started sucking on the cajun sweet pickles that my mom makes at Christmas time for some spice. Sad, I know.
Recent doctor visit revealed that I would benefit from some IV antibiotics, but it wasn't an emergency. I made a deal that she let me wait 6 weeks and be reevaluated because I was beginning playing soccer again and running once more. I was making a serious effort to improve my cardiorespiratory health and I wanted to see if that would help before we made any decision to send me to the hospital. I've been running every day since.
My running partner, aka the boyfriend, has been great. When our work schedules allow us to run together, he meets me at the gym closest to me and we run. He gives me the push to keep going without pushing me to a breaking point. I've also lost several pounds over the last few months and he's declared that I'm going to eat as much as he does, if not more. We'll see how that works out!
Speaking of the boyfriend, all is well in that department. ("well" is the understatement of the century, actually.) We're extremely happy and things just make sense. It's nice when your best friend is also your boyfriend. :)
Speaking of friends, one of them (aka Emmons) is turning 21 in August and someone in her family got the great idea to have a serious celebration... IN VEGAS. Come late August I will be flying out with her family for a 21st birthday party in Sin City. I'm sure there's nothing that can go wrong.. haha!
Two of my other close friends are getting married in November.. on the same day... in different cities! Bummer! I'm very excited for them both and can't wait to celebrate with them!
On that note, I think that's all the updates I've got so far. Well, I'm sure there are plenty more, but that's all I've got for today. One more reason I don't blog, before I forget: I spend all day at work at a computer. I really don't want to get on my home computer once I leave. It's just not appealing to me.
Ciao.
Tuesday, May 8, 2012
VX-809
"Dear Friend,
We have encouraging news to share with you. This morning, Vertex Pharmaceuticals announced promising interim results from a Phase 2 combination study of Kalydeco™ and a potential CF drug called VX-809.
Both therapies are designed to treat the underlying cause of CF and were tested in people who have the most common CF mutation, Delta F508. People with two copies of the Delta F508 mutation who took both drugs in the Phase 2 study showed significant improvements in lung function.
The trial is ongoing and complete results, including data from patients with one copy of the Delta F508 mutation (heterozygous Delta F508), are expected this summer.
These interim findings are important because they show that our approach to target the underlying cause of CF is on the right track. Vertex plans to begin a pivotal trial of Kalydeco and VX-809 in people with two copies of the Delta F508 mutation, pending final study results.
We are pleased that Vertex is accelerating its plans for a pivotal study of the combination treatment in those with two copies of Delta F508. The CF Foundation played a key role in the development of Kalydeco and VX-809, providing significant scientific, clinical and financial support.
We still have much to do, but today’s news is a significant step in our work to defeat cystic fibrosis.
We will not rest until we find a cure.
Thank you for all you do.
Sincerely,
Robert J. Beall, Ph.D."
Sincerely,
Robert J. Beall, Ph.D."
The part in red APPLIES TO ME.
The rest of it applies to over 90% of CF patients.
The CF world holds its breath... I know I am.
This could be it.
The "cure" of my lifetime.
I'm nauseated.
I'm excited.
I'm terrified.
I'm speechless.
If results are very positive, I will cry. If results are not as good as they had hoped, then so be it. Life goes on as expected. But if this thing is for real and I get to be put on it, I will cry. Probably every day. For a long time. Oh look, I'm crying now. Most of you will never go through this experience. Where the thing you've wanted more than anything else in the entire world was never even in sight and suddenly it may not be far away at all... and then may be soon in my hand for me to take in pill form.... I don't know what I'll do if/when the results are good and I have my prescription in hand. I will fall on the floor crying, praising the Lord for this miracle.
This might actually happen.
Soon.
Hold your breath...
-Andrea
Sunday, April 29, 2012
Graduation
Graduation date: Nov. 17. 28 weeks and 6 days away. (After this quarter) 5 classes, 1 practicum, and 1 internship away. And not a clue of what I'll be doing Nov. 18 and on.
It's gonna be a bumpy ride these next two quarters. And the end of this quarter. Time to hold on tight because, like last quarter, it's eat or be eaten.
Moving home, sorta, starting late May. Commuting a lot and living in my college town some too until my lease expires on July 1. Lots to do... lots to do....
*deep breath*
Here we go.
It's gonna be a bumpy ride these next two quarters. And the end of this quarter. Time to hold on tight because, like last quarter, it's eat or be eaten.
Moving home, sorta, starting late May. Commuting a lot and living in my college town some too until my lease expires on July 1. Lots to do... lots to do....
*deep breath*
Here we go.
Tuesday, March 27, 2012
Brief.
I sometimes miss writing. I do a lot of it outside of the blog for venting purposes. I say "a lot" but it's really not that often. I'm happy waaaay more often than I'm not. This year (March to March) has definitely been better than the previous couple of years. I'm not saying it wasn't easy, but it was definitely better overall.
I get frustrated when people don't do the right thing. When people take advantage of others or act as though other people don't have feelings. I get upset when rudeness abounds and selfishness takes over love, compassion, and thankfulness. That's when I vent.
I hope this blog continues to be of use to some people out there. I know it was recently to my own parents who cleaned Cayston pieces for the first time.
I may write again regularly one day. We'll see. :)
-Annie
ps- I graduate from college in the fall, early. I'm very proud of myself. Updates to come no doubt.
Monday, November 14, 2011
Nov. 14, 2011
Dear readers/glancers/everyone:
I apologize for being absent for about a month and a half. I either never knew what to say or didn't have time to type or just didn't feel like sitting at my computer any longer. I don't even really think I know what to say now, but here I am.
I had my doctor's appointment on Oct. 19. It went alright. My weight was up about 3lbs so that was fantastic. I go in for PFTs and after one blow, the machine breaks. So to be honest, I have no idea what my PFTs are right now. That makes me a little nervous, but since my first try was around my baseline, they didn't fret about numbers and sent me on my way. *whew*.
I think ultimately I will phase the blog out of my life for future employment reasons. I don't want it to negatively affect if/where I get a job. My thoughts and feeling about my health/disease are becoming more solid and detailed and I don't feel like they all need to be posted here. On that same note, I don't feel like my personal life should be available for all to read either, so I don't feel the need to post about it either. It's the same reason my facebook page is more barren than it used to be. Those who need to be informed, or who I feel should be informed, about my life will be. Everyone else will find out through the ever-informative grapevine.
I love my blog, don't get me wrong. I'm actually really proud of it. However, I just don't have the "bug" to keep up with it. I wish I did, but I have so many other things going on that are important to me or are demanding of me that typing up my feelings and thoughts and memories just aren't in the top tier of priorities. I would much rather be spending time with the people who are important to me.
I do have one more thing to write about, and I may be back from time to time, who knows. I wanted to write on the experience of moving in with 3 girls I did not know and trying to slowly introduce them to and explain to them my health "stuff" without being blunt or awkward or weird. It's an art. And while I have no real advice on how I did it, somehow it worked. I think the funniest moment was when one night I was doing the Vest and one of my roommates realized what I was doing. She knocked on my door and I shakily yelled "come in!" While she stood in my doorway she made a comment that made me laugh: "I want to touch you!" She then proceeded to dive onto my bed to feel the Vest and how it shook me. My other roommate then realized what was going on and ran into my room too saying "me too!!" and came to feel the Vest as well. After a few seconds of that, and some time of them begging me to talk while being shaken, they left. Still regularly, that first roommate likes to come in my room while I do the Vest and begs me to talk to her. I think overall my roommates have acclimated to me having multiple machines in my room and a million meds to take quite well, thankfully. I was really nervous at first, but alls well.
It's final week so I may or may not post again soon. I'm really not sure to be honest. We'll see.
-Andrea
Sunday, September 25, 2011
Where did I go?!
Oh hello again blog! Sorry I kinda forgot about you... things have been busy, SHOCK I know.
One of the things I added to my schedule is... RUNNING. Yep. I'm running at least 2 miles a week. It's not much but it's a start. Hoping to bump it up this week a little. Getting ready for that doctor's appointment!!
Swamped with school, future, friends, sorority, and everything else I cram into my crazy weeks! It's been fun though. And all is well!
Great Strides walk coming up in 2 weeks!
Sorry I don't have much to say! Just glad to be BACK!!!!!!!!
-Andrea
One of the things I added to my schedule is... RUNNING. Yep. I'm running at least 2 miles a week. It's not much but it's a start. Hoping to bump it up this week a little. Getting ready for that doctor's appointment!!
Swamped with school, future, friends, sorority, and everything else I cram into my crazy weeks! It's been fun though. And all is well!
Great Strides walk coming up in 2 weeks!
Sorry I don't have much to say! Just glad to be BACK!!!!!!!!
-Andrea
Friday, September 9, 2011
Back to the grind!
Y'all I'm so happy to be back. Actually, that's an understatement. To have my life back means the world to me. While I don't get to really participate in formal recruitment due to missing so much, it's ok because I have my friends and class and my freedom back!! My arm has almost completely healed already, however the blisters left scars and I have the usual "arm button" (like a belly button) from the actual line, which still has a little more healing to go. I'm feeling pretty good too. I'm a little tired from jumping right back into recruitment and school, but I'll have time to come up for air in a few days.
School looks like it's going to murder me this quarter, but I'm really not stressed about it. I really feel like I can handle anything. The summer quarter, flying by so quickly, taught me how to stay focused and work even when I'm really and truly tired of doing homework. That's what is going to get me through this quarter. I'm taking a full load (12 hours for a quarter system; that's 5 classes for me) and it will be chock full of busy work, homework, papers, and tests. But I can do this. That's not to say I won't have moments where I just cry into a kind shoulder about how much I hate school and how tired I am, but I can do this! I've already found that mentality of "school will never end, you have several years left, suck it up and go" so hey! What's another 3-5 years?....
Time to get a little homework done (yes, already) before recruitment this evening!
My "arm button"!
-Annie
Wednesday, August 31, 2011
PICC Tales- the last full day (Picture heavy)
I promised pictures, and here they are! Time to finish out my PICC tales for this 2 week session.
So since I've been home, I've had my dressing changed twice. Not fun at all. Each dressing change, due to skin complications, sent me to the edge of tears/passing out from pain. One of my stitches has also been bleeding during all this time and that caused a lot of pain when it had to be cleaned too. My home health nurse Bridget changed the dressing on Thursday, because I developed a spot of something underneath my dressing and it needed to be freshened up. By that night and Friday morning, it was completely ruined and needed to be changed again. Turns out my skin had blistered under the dressings and those blisters had popped under dressings #2 and #3 and required a dressing #4 on Friday. Luckily, this last dressing has lasted. My overall rash is completely gone leaving me with rough skin on my arm and my face, so I'm getting the spa treatment tomorrow after my PICC comes out! The only place that still itches is under the dressing where it hasn't had air to heal.
The broncho-spasms have quieted down thankfully and have not been as bad.
One thing I haven't mentioned that some of you know already is that my parents left the country last Saturday and returned this Saturday! They had their 35th wedding anniversary cruise planned out for months and my hospitalization almost made them cancel! Luckily, after lots of discussions, we worked out a deal where I do the IVs myself (see the picture of the extension below) and my sister-in-law and nephew live with me for the week my parents are gone to help get me through. I'm glad my parents didn't cancel their cruise and trust me enough to let me check myself out of the hospital on Monday and take care of my IVs while they were gone. It was a huge step in me being independent (as if I wasn't already lol) and them trusting me with my health even more.
So, I promised you pictures so here they are, with captions and explinations to walk you through kinda what I've been handling and going through.
So, I promised you pictures so here they are, with captions and explinations to walk you through kinda what I've been handling and going through.
Warning: I do have pictures of the exposed PICC (well almost exposed) and blistered skin.
My 3rd dressing, ruined thanks to my blisters.
My 3rd dressing, ruined thanks to my blisters.The blistered skin and uncovered PICC (with Biopatch still on)
The 4th and final dressing- layers of folded gauze to protect the skin and the PICC
The line extension- what's made it possible for me to be independent this week!
Two of my meds in the compression balls- Tobra (L) and Fortaz (R)
Zyvox- my third antibiotic which had to be hung on the dreaded IV pole
I thought I got to leave this thing at the hospital.... nope. I did learn how to set up an IV bag and line though, which was pretty cool.
This was the cool device that set the mL/hr rate. Very cool.
Mom made me this cake when I had 3 days left!
And on a completely different note, I got my new Vest today!
I decided not to take pictures of the alcohol prep pads, the saline flushes, and the heprin just because it was pretty standard. But those have been very common sites at my house since I flush before, after, and in between each IV dose, clean with the alcohol prep pads in between everything, and hep lock with heprin after each IV session ends and flush the unused port for that day with saline/heprin each morning and night. Since this PICC had duel ports, I had to switch them out each day and replace my extension every 3 days. So much to remember but once it became routine, it was no big deal. However, I am very tired these days but I think once I get back in my normal day routine (you know, the one that DOESN'T involve IVs) I won't be so tired! My PICC pulling appointment is at 10am tomorrow (Thursday) morning and my facial is that afternoon. I'm almost done!
See you on the other side!
-Andrea
Wednesday, August 24, 2011
No pictures still...
Shame on me! I haven't gotten around to taking pictures yet. Still adjusting to home life.
7 more days and I'm DONE. I am very ready to have this PICC out... it's the been most frustrating PICC yet. It still hurts a week later and has been bleeding today. My home health nurse is checking on it tomorrow. I think it's just the extra stitch in my arm since they messed up the first time.... ugh.
My rash is still just as itchy as every.
I've also developed a bronco-spasm with one/all of my IVs. Great. So now it's hard to breathe when doing my IVs. Again, most frustrating IV case so far.
Thank you to EVERYONE who has brought me food, dropped by, or called/text to see how I'm doing or if I need anything. Yall are the best and I wouldn't be able to do this without you.
Guys, I'm tired. This is exhausting. I don't remember this being so tiring. I guess that's what happens when you get old, right? Yuck. I guess the 5am-11pm thing isn't helping. Oh yeah, I'm starting treatments 30min before my IVs to help manage/prevent the bronco-spasms.
Still no official ruling on the arm allergy, by the way. I don't think I'll ever really know.
I have guests tomorrow and my IV is almost done so I guess I'll call it a night.
-Andrea
7 more days and I'm DONE. I am very ready to have this PICC out... it's the been most frustrating PICC yet. It still hurts a week later and has been bleeding today. My home health nurse is checking on it tomorrow. I think it's just the extra stitch in my arm since they messed up the first time.... ugh.
My rash is still just as itchy as every.
I've also developed a bronco-spasm with one/all of my IVs. Great. So now it's hard to breathe when doing my IVs. Again, most frustrating IV case so far.
Thank you to EVERYONE who has brought me food, dropped by, or called/text to see how I'm doing or if I need anything. Yall are the best and I wouldn't be able to do this without you.
Guys, I'm tired. This is exhausting. I don't remember this being so tiring. I guess that's what happens when you get old, right? Yuck. I guess the 5am-11pm thing isn't helping. Oh yeah, I'm starting treatments 30min before my IVs to help manage/prevent the bronco-spasms.
Still no official ruling on the arm allergy, by the way. I don't think I'll ever really know.
I have guests tomorrow and my IV is almost done so I guess I'll call it a night.
-Andrea
Monday, August 22, 2011
Home IVs- Night #1
Hello all! I think I'm doing well keeping up with the blog while I have all this "spare time"! Tonight was my first night home on IVs in right about 2 1/2 years. Learning curve! Luckily it did all come back pretty easily. The only curve ball is that one IV that has to be hung from a bag on an IV pole. Honestly, I feel like a nurse having to set up an IV bag, but it's not really bad. I was nervous doing it the first time, just since it was new, but my home-health nurse wrote out step-by-step on how to do it and my sister-in-law, who learned it with me this afternoon, was walking through it with me. We had no problems and I feel confident now in doing it tomorrow morning. Luckily though, it's not my 5:30 dose!!
I'm doing treatment now, so late, because I spend most of my IV time in the den being social. I'm ok with staying up late to do treatment and getting up early to do IVs/treatment. I figure if I need to, I can grab a nap during one of my 2 breaks. But I did notice something: my motivation to take care of myself was reignited 10-fold during my hospital stay. I was reminded how WORTH IT it is to take care of myself every day so I don't have to go back to the hospital any time soon. It flew by, honestly, and I didn't suffer *too* much, so it wasn't a horrible experience. However, I wanted nothing more than to redeem myself, go home, and take care of myself. And it's a good thing I'm rejuvenated with this because right now, my medicines consume almost the entirety of my time awake during the day. From 5:30am-11pm (plus treatment if I do it after the IVs like I'm doing tonight). But my dear friends, hear me loud and clear...: IT IS 100% WORTH IT. I want to have my health and have my life and if I have to devote some time and pain and discomfort and frustration to GET more years added to my life, then so be it. I was blessed and cursed with this disease and I have to take the bad with the good, suck it up, and handle it with a smile. One of the best parts of my hospital stay was the many times I got to tell a nurse/doctor/RT/anyone how I haven't been in a hospital in over 2 years. Their reaction was motivational to me. I want it so much more than that. I want to boast about 5 years or 10 years. It sounds crazy, but I believe it's doable. But only if I don't get down about myself again.
****If you are reading this, and you hear me complain or read about me being down about having to take care of myself, please take this last post and rub it in my face until I remember what these 2 weeks felt like. Thanks!****
I'm also upping my Vest time from once a day for 15min to twice a day for 30min. I really don't like the Vest, so I'm proud of myself for this change. It will take some dedication and a little push from those closest to me, but I know I can stay with it. IT'S WORTH IT IN THE LONG RUN.
While in the hospital, BORED, I stumbled upon a website that sends an email to your future self. I don't remember when mine will be delivered, maybe Nov of 2013, but I told myself how much I hated being stuck in the hospital and how I needed to do everything possible to stay out. Maybe I'll get that email at just the right time in my life...
Allergy update: so we're really still not sure what's causing this, but Sarah and I think it might be a combination somehow of the betadine and one of my medicines. We think this because the rash is almost completely only where the betadine was put on my arm, but it only flares/itches when I have IVs flowing. It's so weird. Either way, I have this prescription topical cream that did wonders for the itching this evening.
I think that's all for tonight. I know I still have yet to get pictures up, but I will soon. Just hang tight!
Thanks for reading, as always.
-Andrea
I'm doing treatment now, so late, because I spend most of my IV time in the den being social. I'm ok with staying up late to do treatment and getting up early to do IVs/treatment. I figure if I need to, I can grab a nap during one of my 2 breaks. But I did notice something: my motivation to take care of myself was reignited 10-fold during my hospital stay. I was reminded how WORTH IT it is to take care of myself every day so I don't have to go back to the hospital any time soon. It flew by, honestly, and I didn't suffer *too* much, so it wasn't a horrible experience. However, I wanted nothing more than to redeem myself, go home, and take care of myself. And it's a good thing I'm rejuvenated with this because right now, my medicines consume almost the entirety of my time awake during the day. From 5:30am-11pm (plus treatment if I do it after the IVs like I'm doing tonight). But my dear friends, hear me loud and clear...: IT IS 100% WORTH IT. I want to have my health and have my life and if I have to devote some time and pain and discomfort and frustration to GET more years added to my life, then so be it. I was blessed and cursed with this disease and I have to take the bad with the good, suck it up, and handle it with a smile. One of the best parts of my hospital stay was the many times I got to tell a nurse/doctor/RT/anyone how I haven't been in a hospital in over 2 years. Their reaction was motivational to me. I want it so much more than that. I want to boast about 5 years or 10 years. It sounds crazy, but I believe it's doable. But only if I don't get down about myself again.
****If you are reading this, and you hear me complain or read about me being down about having to take care of myself, please take this last post and rub it in my face until I remember what these 2 weeks felt like. Thanks!****
I'm also upping my Vest time from once a day for 15min to twice a day for 30min. I really don't like the Vest, so I'm proud of myself for this change. It will take some dedication and a little push from those closest to me, but I know I can stay with it. IT'S WORTH IT IN THE LONG RUN.
While in the hospital, BORED, I stumbled upon a website that sends an email to your future self. I don't remember when mine will be delivered, maybe Nov of 2013, but I told myself how much I hated being stuck in the hospital and how I needed to do everything possible to stay out. Maybe I'll get that email at just the right time in my life...
Allergy update: so we're really still not sure what's causing this, but Sarah and I think it might be a combination somehow of the betadine and one of my medicines. We think this because the rash is almost completely only where the betadine was put on my arm, but it only flares/itches when I have IVs flowing. It's so weird. Either way, I have this prescription topical cream that did wonders for the itching this evening.
I think that's all for tonight. I know I still have yet to get pictures up, but I will soon. Just hang tight!
Thanks for reading, as always.
-Andrea
Hospital Days- Monday
Well!! This post is a lot different than I expected it to be, in a good way! I'm writing this from my couch at home!!!!!!!! (That sentence can't have enough exclamation points on the end of it) Y'all, I'm so excited to be home. So so so excited!!!! I now have my dog home from prison (boarded at the vet) and my afternoon dose of my IV drugs completed. I'm all over this, no problem.
We think I'm actually allergic to the betadine and iodine, not the dressing. But to be sure, we're going to keep using this new dressing and no use betadine/iodine anymore. I have some prescription cream that will help with the rash/itching thankfully.
I will get pictures of my medicines now that I'm home. 2 of them are the imploding balls and one is a bag I have to hang on an IV pole. I also have an extension on the line that allows me to do all of the IVs myself.
Ok I'll keep you updated since I'm just going to just be watching Netflix and playing cards with friends/family all week. Pictures coming soon!
-Andrea
We think I'm actually allergic to the betadine and iodine, not the dressing. But to be sure, we're going to keep using this new dressing and no use betadine/iodine anymore. I have some prescription cream that will help with the rash/itching thankfully.
I will get pictures of my medicines now that I'm home. 2 of them are the imploding balls and one is a bag I have to hang on an IV pole. I also have an extension on the line that allows me to do all of the IVs myself.
Ok I'll keep you updated since I'm just going to just be watching Netflix and playing cards with friends/family all week. Pictures coming soon!
-Andrea
Sunday, August 21, 2011
Hospital- Quick Sunday Update
No real news here. Waiting to see the doctor on the results from the levels test again after they changed the dosage. My rash hasn't improved any. I think it may be getting worse....umm yep it's worse. And now even itchier!! At least I have hydro-cortizone cream to help.
Still hoping/praying I go home on Monday! I'll post updates when I have them, of course.
-Andrea
Still hoping/praying I go home on Monday! I'll post updates when I have them, of course.
-Andrea
Saturday, August 20, 2011
Hospital Stay- Saturday
I have developed a skin allergy to the clear dressing for the PICC line. So as of late last night and now still into Saturday, my eyes are puffy and my left arm (where the PICC is) is covered in red itchy bumps. They gave me benadryl last night and today but it's not helping too much. They also changed the dressing to a more cloth mesh dressing instead of the clear adhesive.
Allergy
New dressing
My tobra levels came back and they were too low. So instead of getting a tobramyacin does every 24 hours, I'm getting a dose every 8 hours. So now I have 8 antibiotic doses each day instead of only 6. They are going to check my levels again after 3 more doses and if they are good, I *might* be home by Monday afternoon, Tuesday for sure. If the levels still aren't good, I have to wait another 3 doses to try again. Each retry is two more needle sticks in my arm.
I'm getting a little homesick.
I was a specimen for the med students today. It's a learning hospital. I don't like that. It was a serious blow to my self-esteem today. After talking to Mom some, and getting a nice shower, I feel a little better.
I'm standing and walking as much as possible today. For instance, I'm standing up while typing this post. I'm so sick of being in that hospital bed. I know that it's not helping me get better, so I'm up and about now. Standing for about 10 minutes has already helped me feel like I can get through this feeling good about everything. I'm fighting.
-Andrea
Allergy
New dressing
My tobra levels came back and they were too low. So instead of getting a tobramyacin does every 24 hours, I'm getting a dose every 8 hours. So now I have 8 antibiotic doses each day instead of only 6. They are going to check my levels again after 3 more doses and if they are good, I *might* be home by Monday afternoon, Tuesday for sure. If the levels still aren't good, I have to wait another 3 doses to try again. Each retry is two more needle sticks in my arm.
I'm getting a little homesick.
I was a specimen for the med students today. It's a learning hospital. I don't like that. It was a serious blow to my self-esteem today. After talking to Mom some, and getting a nice shower, I feel a little better.
I'm standing and walking as much as possible today. For instance, I'm standing up while typing this post. I'm so sick of being in that hospital bed. I know that it's not helping me get better, so I'm up and about now. Standing for about 10 minutes has already helped me feel like I can get through this feeling good about everything. I'm fighting.
-Andrea
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