“Playing the Cards Life has Dealt”
This journal is from my caringbridge site (www.caringbridge.org/visit/65rosescf) that I started to help keep everyone up to date about how I was doing. It helped because it was one place that everyone could go and even sign up to receive emails when I posted a new entry. I then wouldn’t have to repeat myself a million times. My first entry was on July 26th, 2006. I am very thankful for the caringbridge site; it has helped family and friends stay current on how I am, even family that I don’t get to see because they are states away.
As I post on my caringbridge page I always wonder if anyone is really reading it. Then I get emails or messages in the guest book from people whom I have never met but they are reading it because they found my page through someone else. Just to know that I am helping and encouraging someone by sharing my journey helps me keep going. Without further ado, here is my journey…..This is only a small snippet.
Wednesday, July 26, 2006 8:50 AM, CDT
Well this is my first blog here on caringbridge. If you want to know what Cystic Fibrosis (CF) is, here goes.
I was born with CF and was diagnosed at 5 mos old. CF is a genetic disease, so no you can’t catch it! It makes my body produce a lot of mucous which ultimately makes me get lung infections a lot because the mucous that is in my lungs holds onto any germ or fungus that it gets and it is not easy to get rid of them. I have to do breathing treatments every 4 hrs every day. I also have to take medicine to help digest my food because my pancreas does not work correctly. I have to go into the hospital quite often to fight the infections. I call that going to “Club Med” for a “tune-up”, they have the “penthouse” waiting for whenever I need to go. A tune-up consists of IV antibiotics, respiratory therapy, clapping the VEST to help loosen up the junk in my lungs so I can cough it out, that’s the only way that it will come out. Having CF feels like there is a 400 lb man sitting on my chest and I have to breathe and he won’t move for nothing. I do have a great ab workout though, yes from coughing all day long. It’s not good when you pull muscles and better yet fracture ribs from coughing. I love it when people stare at me because I’m coughing and can’t stop; no really I do, ok just kidding. Everyone always looks at me like I’m going to give them something which is impossible CF is not contagious. I know they don’t know that’s what’s going on but oh well. I am very careful not to stare at people who have disabilities because I know how it feels. So to all of you out there, you are no better than I am so quit staring at me. If anything I am better because I know how to seize the day due to this lovely disease. LOL!!! Even better I have had the joy of coughing up blood a few times. If that doesn’t scare ya I don’t know if you are human. I guess I’m on a rant right now so just go with it, ok! I have a great family but still it doesn’t make this easy, have I already said that?
Living with CF sucks because, well it just does! I am a fighter and I won’t give up until I see God face to face, but that doesn’t mean that this is easy! I’m living like I am going to make it until I’m 100 yrs old, ok maybe only 80 yrs old, that’s still good. You’re probably wondering what life expectancy is of someone with CF, average is 35 yrs, but I know people who are in their 40’s, 50’s, even 60’s!
I don’t always feel like this but today is a blah day so sorry. CF makes me who I am for the simple fact I have had it all my life and I would not know what to do if I had a day of no coughing and no treatments. Wishful thinking! One day I will know what that is like but that will not happen for a longtime because I don’t plan on saying hello to God anytime soon!
Well that’s enough of this rant. Sorry if this depressed you but oh well, welcome to my world.
Wednesday, August 9, 2006 8:54 AM, CDT
Growing up with CF was ok, I guess. I always told people what I had and what it was. I had a good set of core friends. My friends knew all of the stuff I had to do like breathing treatments and all of the medicine I had to take and that I got sick a lot more than them. They were fine with it. They treated me like a normal kid which I was but I had to do some things that other kids did not have to do. I had a lot of sinus surgeries as a kid; they started at 10 yrs old. I had 1 per year for a while, I think until I was 16 or 17. Then I had another one when I was 23 or 24, sorry bad memory from all of the drugs I have taken, legal drugs that is. Kids can be cruel, I was made fun of because I was scrawny and I had “cooties.” I once told a boy that he got CF when I touched him because he made a scene in the lunch room about me “having a disease.”
I started being in the hospital a lot for CF related things at the age of 13 until…., who am I kidding still ongoing.
I know this is boring, so why are you still reading this?
I have begun a book that I have entitled “Playing the cards life has dealt”, it is 2 sentences long so far, just kidding it is something like 20 pages, that’s computer pages. I don’t know if it will ever go anywhere but someone may find it interesting after I die! : )
Tuesday, December 26, 2006 9:16 AM, CST
YOU MIGHT HAVE CF WHEN: *instead of buying a car you buy a vest *you have more scars than a drug addict *you eat more pills than food *you get told all the time how skinny you are and how much you are hated because of it *you use more tissue than Kleenex can produce *you use a spit cup more often than someone who chews tobacco *you know how to operate your IV pump better than your nurse, in fact you instruct the new nurses how to use it *you call the hospital Club Med because you are there so much *you can call coughing a great ab workout *you spend your 401K on Pulmozyme & TOBI *you can’t laugh without coughing (great chest physio) *you get beat 2-4 times a day and they say it is because you need it *you get asked “are you ok” every time you cough *you get stared at by strangers when you do cough because they are thinking they can get what it is that you have
AND BEST OF ALL
*you have to take a break during sex to cough…but get right back to the task at hand (sorry for you PG readers. It is handy advice for in the future, way in the future)
Thursday, January 11, 2007 9:13 AM, CST
Well ok I thought I would answer some the most common questions I get asked about CF.
What is CF? CF is Cystic Fibrosis a genetic disease.
Is it contagious? No it is not it is genetic so you cannot “get it”…so free hugs and kisses for everyone no need to worry!
How long have you had it or when and how did you get it? Well since it is genetic I have had it ever since the sperm met the egg! I was diagnosed with it when I was 5 months old, which means that they tested me to see if I had it and I did.
What does it do to you? It affects my lungs and pancreas. CF makes my body produce more mucus than yours does. Your body produces mucus all over and one of the main places is in your lungs. So that means that I produce a lot more and the mucus in my lungs just sits there and holds onto any germ it can. So that is why I get sick easy. Ok, now with the pancreas, mine does not produce all of the enzymes that it needs to help digest food so I have to take pills when I eat to help. I like to call it the curse of skinniness. Just so you know I have to work at keeping weight on and when I get sick I can lose 10 pounds quick. So quit saying “Shannon, you are so skinny, I hate
you!” Well I would gladly give you CF for a day so that you can have my being too skinny problem and don’t forget about the lung stuff too and I think you would change your tune and give it back ASAP! Just so ya know, I can’t help it!
What happens when you get sick? Well I have to go into the hospital and get IV antibiotics to help kill the infection and also to get good chest physiotherapy. Chest physio consists of being “clapped’ or “beat.” Sounds bad I know but it isn’t, it is done to help loosen up all the junk in my lungs so I can get it out because there is only one way out! I then a lot of times will have to do IV’s at home so that I won’t have to be in the hospital for 3 weeks at a time. It is not fun but it is what I need to do!
Can you have kids? Well yes and no. Yes, I can if I am able to get pregnant which it is all in working order! I would have to be healthy enough to carry a baby. That is something that would need to be discussed when I was at the place in my life that I wanted a baby.
Can you smoke or do you smoke? No I don’t smoke and I guess I could but I like being able to breathe. Yes, I can’t be around smoke because it makes it hard for me to breathe.
Are you going to die from CF and when? Well most people want to ask this and get scared to but trust me it is not a new one for me. I don’t know when I am going to die and I don’t think anyone does. I know people who are in there 60’s and 70’s with CF so there is no telling when I will die. And yes most likely I will die from CF but there is the chance that I could step out into the street and get hit by a bus….LOL. I know what you are thinking, it is no laughing matter, good for you to say that but I thought it was funny. Laugh, it is ok, I give you permission!!!
But you don’t look sick? Yes, this is true I don’t. I’m not always “sick” anyway. I will always have CF but I have a lot of good days and even months or years! So no I’m not decrepit looking and why should I be. I still have to look cute! This is the hardest one because people don’t think that I am sick because I look “normal”, whatever that is. Just because I don’t look it there is something going on in there…LOL!
Have you thought about a lung transplant or can that even be done? Yes, I have asked all of the questions to my doctor but I have way to good lung functions to even think about that right now! Which is a very good thing!
Aren’t you scared? Well at times yes but I have had this for my whole life so I am “used to” it now. That is why it is good to have family and friends around when I need them.
About the being scared thing: I just wanted to tell you that it is ok for you to be scared or worried for me and if you ever are you can tell me, it won’t bother me. I like people to be honest with me and not act like all is good in the hood when they are really scared poopless or worried. This is the journey that I have to take and you can choose to take it with me. In my life I need people who love me for me and all that comes with me and can joke around about CF and also be serious when seriousness is needed, so with that said if you are up for it…join on in!!!
Do you have any super powers? (just for Travis):no, I don’t have any super powers…I just have the best ab work out known to man. I cough all day everyday so therefore I have abs of steel!!! Beat that ab roller guy!
Well those are what I think are the most common questions asked to me, just thought I would share them. Just in case you wanted to ask and haven’t. If there is any others just ask! I have probably heard every question there is or I have thought of it myself.
If this boring you sorry, but you are still reading it since you are reading this right now, not my fault!
Just so you know, I am a very happy person and fun person to be around! It is not always blah and down in the dumps like you may think I would be. I like to joke a lot and as lot of people don’t get my humor, but hang around with me or talk to me and you will begin to understand it!
Bye imaginary people……..Until next time America!
PS CF is not my life it is just a piece! I can’t forget about CF but I am more than CF!
Thursday, January 11, 2007 9:20 AM, CST
Well my doctor appointment went great! My lung functions are back up to 2.05 (FEV1)!!!! Last week they were 1.97…..movin on UP! So that means no club med or IV’s….YEAAAAAAAAAAAAAAAAA! Sorry I just had to do it! Now they (my lung functions) need to stay up! You can do it…I know you can (just a little pep talk to my lungs…LOL)
Until Next time…
Tuesday, January 16, 2007 9:22 AM, CST
Well today is a good day…my lung functions are up to 2.26! That is the highest they have been in over a year or so!!! YEA!!!!!! Now I just have to keep them up!
That’s all for now, Bye friends!
Until next time…
Thursday, February 1, 2007 9:24 AM, CST
Today is my birthday…YEA! You may be wondering why I am so excited that it is my birthday because it is just another day. Well you are right it is just like any other day but for me my birthday marks another year that I made it…alive! When I was born my parents were told that I would not live past 12…well sorry doc’s I am 27 and alive and kickin and not going anywhere soon! So yes I am excited I have a right to be!
Other news…I have been feeling pretty good! I had more lung functions done last week and they did go back down to 1.98 which it is most likely because of being on prednisone for to long so I am now off of it. But I am holding steady around 2.00 which is what my doctor wants. So I may be keeping a Club Med stay at bay for a little bit…hopefully since I am feeling good! Let’s see what else is new….ummmm…I can’t think of anything really!
Everyone have a great day and a great weekend…cause I will!
Until next time…
Tuesday, August 14, 2007 9:32 AM, CDT
Just thought I would give a little update on me. I have not been feeling the greatest the past few days. I was a good girl and called my doctor today instead of waiting. He put me on the normal 2 oral antibiotics that he normally puts me on with a big ol “BUT” involved, if I do not start to feel better while on them or if I finish them and start not to feel good soon after we will have to talk IV’s. I don’t know if I could convince him to let me do the IV’s at home instead of in Club Med but if you know me at all you know that I will do my darndest to try to convince him. My doctor knows how I am and I know how he is and if he stands firm on me going in Club Med it is because I need to and by then he will have let me use all my lifelines, so to say. So enough rambling on about all that. I would just say that my clinical diagnosis is “crappy”!
So much for an IV and oral antibiotic free summer. I will at least be off of the oral anti’s before Labor Day weekend and I can enjoy my Labor Day weekend at the Ozark’s. I told my doctor that I am too busy right now and that I have plans Labor Day weekend and that after that I would do IV’s or even go in Club Med, I’m bad I know but I have a life. Yes, yes I know that if I don’t take care of myself I won’t have a life, it’s not like I am ignoring it…I am just putting it off a few weeks…lol! Trust I know I feel like crap and if I am saying that I will go into Club Med willingly then that must mean my body has had enough.
Sorry all, I just feel like venting tonight. This is my 3rd or 4th round of oral anti’s in 3 months and 1 round of IV’s on top of that. It just sucks that sometimes I feel like I can’t make plans because I haven’t been feeling good and I know that there is a possibility that I could be on IV’s or be going into Club Med or whatever. Tonight is one of those nights that I just wish I was “normal,” whatever the heck that is! I hate waking up coughing at 3am and having to do a breathing treatment and then sleep sitting up because I can’t lie down because I will start coughing again. AHHHHHHHHH!!!!! Man I hate being sick! I hate to vent about this because I want to always look strong and like it doesn’t bother me, well you have caught me on a weak night. I know you may not understand but oh well I had to get it out and I figured that this was the best way to do it, that and crying. A lot of times I wish I could just go to sleep and wake up when I feel better and then I don’t have to do all the in between stuff that sucks.
Sorry if I sound like I am complaining, if you know me at all you know that this is just my way of expressing my frustrations and me trying to not be “super girl” and do it all by myself. I have realized who my true friends are over the years and also the ones who can’t handle “my life.” I realize that I am hard on myself about things but I have had people/friends walk out on me when I needed them the most, like when I was in the hospital really sick, and that has forced me to take care of myself and to not want to let people in and care for me because they might hurt me or walk out on me too. So it just is easier to do it myself, I know that I won’t let myself down or walk out on myself. With that said, I thank you for reading my rambling on about this and I hope you know that I am not trying to make it a “poor me” moment. About “poor me” moments that is why I try not to show anything because I never want anyone to say that I am trying to make people feel sorry for me. That has never been my goal and never will be. I have always said that if I have to live my life by myself I will. I guess I have taken a big step and vented in this blog and showing my weakness.
Until next time friends…
Friday, September 21, 2007 9:35 AM, CDT
Things not to say…
WARNING!!!! Things not to say to someone with a disabling chronic condition:
…but you don’t look sick (this one is my favorite)
…everybody gets tired
…you’re just having a bad day
…it must be nice not having to work
…I wish I had time to take a nap
…If you’d get out more
…you’re just getting older
…if you’d get more exercise
…it can’t be that bad
…it’s all in your head
…you’re just depressed
…there are people worse off than you
…you’ll just have to tough it out
…you just need a more positive attitude
…this, too, shall pass
…you are just overdoing it
(I wouldn’t wish what I have on anyone, but unless you got it, you just don’t get it)
hahahahahahaha…it’s ok to laugh, really!
Thursday, October 11, 2007 9:37 AM, CDT
Hmmm…where to start…
As I sit outside enjoying the beautiful weather, which by the way is the only place I can get online…lol, I sit and think. I have had some interesting conversations with a few of the closest people to me whom I love with all my heart. I started the conversations with “I’ve got a question for you,” yes I know that can go anywhere. Well I had a few things on my mind while I was sick this last time, which is not unusual for me and I wanted to hear the point of view from those closest to me. I can’t even believe that I am writing this but I guess honesty brings healing, so we will see.
Since being diagnosed with CF (Cystic Fibrosis) at 5 months old I have had an interesting life which has included multiple sinus surgeries, multiple Club Med stays (hospital stays), multiple IV’s, thousand’s of breathing treatments and beating’s (that’s clapping on my back to loosen up the junk, don’t worry no one is harmed, just sore…lol). I have never wanted to worry or burden anyone with all of that stuff and that is why I do it all by myself and never ask for help. The way I look at it is I was dealt CF and I have to live with it, others weren’t dealt it so they have a choice. Well last week I did some thinking and talking with 2 very special people in my life and vented and told my fears and worries.
After listening to their side of things I realize how my thinking is not right. Ok here goes… one of my fears is being left and stranded when I need someone the most, like when I am in the hospital and really sick or something, only because that fear has come to pass twice in my life already. Another worry or concern or whatever you want to call it is, I question why anyone would want to love me and get close to me because I am sick and I could possibly die younger than I want to and it may not be pretty. My thinking is I don’t want to hurt my friends and family by dying because I don’t want anyone to hurt but I know that is impossible because if you love me you are going to be sad when I die. These were the loving words told to me this last week… “Shannon, get your head out of your butt, let people in and let them care for you, it is ok.” “You aren’t super woman so stop trying to act like you can handle everything all by yourself because if you keep it up you will die younger because you won’t let anyone care about you and you will have the entire burden on your shoulders.” “People are going to be sad and hurt when you die, it is normal because they love and care for you.” “Anyone can die young, yes you have CF and you could possibly die young but it isn’t a death sentence.” I also don’t like to vent about CF related stuff because I don’t want it to seem like I am wanting people to feel sorry for me, I do want people to care about me but not sorry for me but I am not letting it happen because I am afraid of being hurt since I know I will always have myself. I have CF but it is not who I am, I know this, but with this blog it probably seems like I am being Debbie Downer but I am not. This is my first effort to let people in so that I can let people care about me and not be afraid. Man this is so hard for me to do…it bothers me that it is so hard…AHHHHH!
I am a strong person because of all I have had to endure in life but I want to be able to let people endure it with me that are right by my side.
Ok I am done venting. I want to thank all of you who have not been scared to be my friend and still love me who even though I have cooties…LOL! Oh come on you know that was funny!
Just thank you for being a friend!!!!
Until nest time friends…
Tuesday, December 4, 2007 8:02 PM, CST
On this episode of Club Dread…Shannon is still here and still has no clue of when she will break free.
Last night was not a good night; I was very frustrated with being sick and not getting better. Mama Hook and I had a heart to heart before she was going to go home. Well Mama Hook ended up staying the night so that we could have a night together, Thanks Mama I love you! We both didn’t get very much sleep. I got and x-ray at 7:30 am. I ended up having to take pain meds last night and this morning, I couldn’t stand the pain it was annoying me but the pain meds only help a little. I have been so tired all day so I have been trying to catch all the sleep I can. I got PFT’s done at 1:30 pm or so. So the report by the doctor is as follows…the x-ray looked a little better and my PFT’s were down to 1.48 FEV1 / 47%. Most likely my lung functions are down because of the pain that I am still having. Due to the pain I am not able to take a very deep breath and force it out. So the boss man says that I will get another set of PFT’s on Thursday and then we will see. He said that if they are up to 1.70 where they were in clinic then he may let me go on home Friday. He also said that he may end up treating me with steroids to help get me better faster. There is the chance of the other bugs that I culture growing faster or more which is not good. He would only treat me with like a week of steroids so hopefully it wouldn’t cause the bugs to grow. So now I will not know anymore until Thursday evening when I see the boss man.
All I know is that I just want to get better no matter how long it takes even though I will do it kicking, screaming and most likely crying a lot! Today was an equally not good day. I am not any better but thankfully I am not any worse. There will probably not be much to update tomorrow but I will post something so that you all have something to read…lol!
Bye for now…
Tuesday, December 18, 2007 10:49 PM, CST
Hello Ya’ll (lol)!
Well I had the long-awaited doctor appointment today. First I went to pulmonary function and got PFT’s done. Great news, they are up! My FEV1 is 2.05 – 65%, when I left the hospital they were 1.64 – 52%. My x-ray was much better. So therefore the report from the doctor is NO MORE IV’s…YAY ME!!! I have lost some weight so now the focus is to gain some weight back and get rested because I am SO tired and worn out still. I am still staying at Jason’s so that I can sleep and eat since he cooks so great for me! I think I will not be taking naps now that I don’t have to wake up to do IV’s. I haven’t been sleeping that great at night so it is a work in progress.
Have a great Christmas and a Happy New Year!
Monday, December 24, 2007 12:58 PM, CST
Merry Christmas everyone!
Let’s all just scream now and get it over with…AHHHHHHHH!!! Ok now the reason for the scream, I am not feeling good again. I started not feeling good about 3-4 days after I got off of IV’s. I have been hurting bad like I did when I was in the hospital but the pain has been weird. The pain has not stayed in one place and it gets very bad and makes me cry. I also have been feverish, chilling, and just plain BLAH!!! So I called my nurse hoping that they would be in the office today which they were. So the verdict is putting me back on 2 oral antibiotics to get me through tomorrow. I am supposed to call them on Wednesday and let them know how I am feeling. If I am no better than it will be back on IV’s. Just so ya know…THIS SUCKS BIG TIME!!!! I just want this pain to go away and to feel better. I am finally eating again; I mean that I have an appetite again, so I shouldn’t be losing any more weight. I still have not been sleeping very well at all. Well I guess neither has anyone else in this house, Jason and his mom, because I wake them up when I start coughing.
Until next time…
Friday, February 1, 2008 8:44 AM, CST
Happy Birthday to me!!!! I’m so excited it’s my 28th birthday!!! I am yet another day older…lol!
Now the update on how I am feeling: I just finished the 2 oral antibiotics yesterday that I was on for 3 weeks. I am feeling pretty good, no pain and no fevers. I am coughing a little more and it is more like drainage from my sinuses. I am hoping that it is due to the weather changing. Only time will tell. I see my doctor again on the 28th of February so hopefully I make it until then. It hasn’t been the best winter for me. I am praying that I will have a GREAT summer with lots of antibiotic free time that I can be in the sun!!!
Until next time…
Friday, February 8, 2008 12:38 PM, CST
It’s back in Club Med for me!!!
I got off of oral antibiotics last Thursday and I started feeling bad within 2 days. So here it is a week later and I am sitting in the doctor‟s office waiting for the floor doc’s to come see me and then get my room, or my suite…lol!
So here is the low down…My X-ray showed a lot of different infiltrates on both sides. My lung functions are down to 1.62 FEV1, which is down from when they were good. So the plan is to put me in today and get started on IV’s, 1 or 2 of them, and to beat the crap out of me to try to get a lot of the infection out. I will get a CT of my lungs to get a baseline of this exacerbation and if no improvement in follow-up CT’s then my doctor may do a Bronch. I told him that I am scared of it. But I will be on IV’s for 2-3 months but more likely 3 months because of the stubborn bug!!! So the Bronch would not be for a few weeks, if I needed one. The Bronch would be to see what’s going on in there and to clear out any plugs if that is the problem, that is if the follow-up CT’s don’t show improvement. My doctor thinks that it is the Stenotrophmonas that is being a little bugger…lol! Since when I am on anti’s I get better and then I get off of them and I get worse, so that is making the Steno even more stubborn. I will hopefully be out of here next Friday, so that’s a week. So that is all I know for now, I will let you know more when I know more. Gotta love KU and the waiting game!
Until next time…
Thursday, February 28, 2008 9:47 PM, CST
Today I went for my follow-up appointment from being in the hospital. Good news is my lung functions are up to 2.09 FEV1 – 65%…WHOOOO! The CT of my lungs showed improvement but there are still some spots of infection. So the verdict is 3 more weeks of IV’s and then I will have another CT of my lungs and more lung functions to see where I am then. Hopefully the CT is much better then and I can get off of these antibiotics. My doctor did say a min. of 6 weeks of IV’s and at the most 3 months. So in 3 weeks it will be 6 weeks total. I hope in 3 more weeks it will be the end because my stomach is just not right because of all of this. I’m tired of not feeling good and being tired all the time, and not sleeping well. I have lost some weight because of what the IV’s do to my stomach and my appetite
Thank you for all of your prayers and friendship.
Until next time…
Thursday, March 13, 2008 11:08 AM, CDT
5 weeks down and 1 more to go!!! I am so ready to be done with these stinkin IV’s. I go back to the doctor next Thursday and hopefully I will be done with them. Today I got to take a REAL shower, my nurse took out my needle that’s in my port after drawing my blood and then I got to take a nice hot shower without being accessed. So then she reaccessed me after I finished with my shower. I feel like a new woman…lol!
Please pray that I will be finished with all of this on the 20th!
Monday, June 23, 2008 4:49 PM, CDT
Here I am again…Steering clear of antibiotics lasted all of about 3 months. I had to call the doctor today. I have been really tired and needing or wanting naps most days. I also have been coughing more and coughing up more for about the last week and a half. I am trying to stop whatever this is before I need IV’s or Club Med. He put me on Avolox and Minocycline, both oral. Yay even more sun sensitive meds, like I need any more of them!!! I just might turn into a raisin this summer, this is a bummer. Hopefully I will start to feel better in a few days and can avoid IV’s and Club Dread. Also so much for making it to my doctor’s appointment without antibiotics on July 17th, I guess now it will be a “follow-up” from being on oral antibiotics and not a 3 month regular check up.
I will keep you updated. Until next time…
Thursday, July 17, 2008 8:57 PM, CDT
I am officially full of poop…lol! I had my appt with my CF doctor today and my lung functions are actually still holding steady at FEV1 2.03 – 70%. He said my lungs sound really good. Then came the discussion about my tummy pain so he sent me to get an x-ray of my abdomen and the results were that I am full of pooh. Now I get the lovely pleasure of drinking Go-lytly, which should be named Go-lotly since you go until you can’t go anymore. Well hopefully after I finish that hideous stuff I will feel better. I know I will be hungry since I will have nothing in me! I did gain weight since my last appointment but I am thinking that since I have to cleanse my colon I will be losing that pretty quick…lol!
I go see the boss man again on September 30th for a checkup. Hopefully I can make it until then without having to call him. I am still off all of the sun sensitive drugs so I am giving it until Monday to get out of my system and then sun here I come!
Until next time…
Monday, July 21, 2008 10:26 PM, CDT
The outcome…wait a minute I shouldn’t start this blog entry like that…! The Go-lytly was so nasty I only made it through half of a gallon. Then I got a call from the boss man and he asked me how I was pooping and I told him all about it and told him that I only finished half of the gallon! Then his response to that was “Shannon you have to drink the whole gallon, you just have to, your x-ray showed a lot of stool in there and you need to get it all out! If you don’t get it all out you will end up in the hospital with a NG tube because of the problems it is causing. This is a serious thing Shannon” So needless to say I went back to Walgreens to get another gallon of Go-lytly and they didn’t have any more so now I have to wait another day to start the torture again. Boss man also said that I may need to drink another gallon after this gallon because I had a lot of stool in there.
Until next time…
Wednesday, August 6, 2008 9:51 PM, CDT
“What is it that brought you in the hospital this time?” “Let’s see I have been told I have CF and I think it might be because of that,” that’s the kind of response you get when you are the 9th person to wake me up in the last 2 hours…lol! Ok I didn’t really respond with that, though I really wanted to.
Today was ok. The abdominal x-ray showed more pooh. Of course if I am eating there will be pooh but I guess my body is not moving it through as fast as it should and it is hanging out in there. So now I am taking Lactulose, senna, and colace to help get it on its way, not any golytly yet. I told the docs that there would be no way I could drink the golytly with the nausea that the Tygacil gives me. So we are now waiting on that to kick in…lol! My tummy is very blah, it’s like as soon as I take the Tygacil it shuts off my taste buds and makes my tummy turn. So I’ve got that going for me…lol!
My eosinophils (I‟m sure that is not even close to being spelled right, but just sound it out…lol) are elevated in my blood work. They are what shows if your body is allergic to something. So “the man” is researching what might be causing them to be elevated. I will have another set of PFT’s (lung functions) and another x-ray of my chest and abdomen tomorrow or Friday morning. If they show improvement I still may be able to go home on Friday.
So here’s the not so great news…basically I am hitting a stage in my journey with CF where my disease is just getting worse. Since CF is a progressive disease I will always hit a place where I can’t seem to get back to what we think my baseline is. My baseline will continue to go down over the years. I can and am trying my darndest to keep it up by taking care of myself but it is inevitable I will not always win the battle.
I wanted to say I am very thankful for all my family and friends, you are the greatest. Thank you for all of your support and love!
Until next time…
Thursday, September 4, 2008 6:27 PM, CDT
What do lung functions (commonly called PFT’s or LFT’s) mean:
FVC – (Forced Vital Capacity): This is the total amount of air that can forcibly be blown out after full inspiration, measured in liters.
FEV1 – (Forced Expiratory Volume in 1 second): This is the amount of air that you can forcibly blow out in 1 second, measured in liters. Along with FVC it is considered 1 of the primary indicators of lung function.
FEV1/FVC – This is the ratio of FEV1 to FVC. In healthy adults this should be between 75% – 80%.
Below is the list of what the percentages mean (in terms of obstruction)
Mild – 70-79% of predicted
Moderate – 60-69% of predicted
Moderately severe – 50-59%
Severe – 35-49% of predicted
Very severe – Less than 35% of predicted
I know that not everyone knows what I am talking about when I talk about my lung functions so I figured that I would put this on here. I hope it helps explain what my numbers mean when I post them.
Last time I went to the doctor my numbers were as follows:
FVC – 2.75 actual – 3.54 predicted – 78% predicted
FEV1 – 1.92 actual – 3.09 predicted – 62% predicted
FEV1/FVC – 70% actual – 87% predicted. A friend asked me what my lung functions were and it got me thinking that the numbers and percentage’s can be confusing. A tenth difference on the FEV1 makes a big difference. For instance, when I am healthy my doctor would love for me to have a FEV1 of 2.00 or better but I can’t seem to do that anymore, so my baseline has changed. You wouldn’t think that 1.91 was a big difference but it is for me. There have been times where my FEV1 was 1.67, now that was a huge difference. Anyway, I thought I would elaborate on lung functions since my mind was prompted…lol!
I am feeling pretty good. I will be finished with the 3 oral antibiotics on Tuesday the 9th. I hope all of my side effects from them (headache, acid reflux, tummy problems) will go away then too! Still walking everyday!
Until next time…
Wednesday, September 24, 2008 12:21 PM, CDT
I thought that you might like to know what I do every day and see what I am actually talking about. I do 4 breathing treatments a day 2 of those include the vest (each treatment takes from 15-30 min), but when I am coughing more and more up I do the vest 4 times a day. I do my walk with “Ted”, a minimum of a mile but I try to do 1.5-2 miles (takes around 30 min). I take a handful of pills in the morning (Effexor, multivitamin, calcium, vit. D, BCP, Minocycline, Bactrim, Prilosec). I then take another Bactrim in the afternoon around 3pm. Then some more with dinner (calcium and Prilosec) and finally another handful at bedtime (Bactrim, Avelox, Minocycline, Ambien if I can’t sleep). So every day I have to spend about 3-4 total hours taking care of myself, but that doesn’t include naps…lol!
Now, a day in the life of Shannon on IV’s…depending on what antibiotics I am on, I wake up around 8am and do an IV infusion (takes approx 30-45 min per med) and then do a breathing treatment (takes about 25 min), also take all my morning meds. Then every 4 hours do another breathing treatment. Different antibiotics have different infusion times and dosing…every 6, 8, 12 hours and by gravity flow or syringe push. In all of that I still have to find time to do my walk and rest/sleep. When I am on anti’s every 6 hours I spend around 2-2.5 hours a day doing just IV’s, so add that to my normal day and it is 5-7 hours total.
It is a full-time job taking care of myself. A cold can and most of the time turns in pneumonia. I don’t know that I have ever had “just a cold.” Remember my lungs have thick sticky mucus in them and there is stuff growing in there, that is what makes me sick. It’s there all the time and doesn’t go away and will never go away, that is why I cough so much and have to try to get as much of it out because it is constantly reproducing.
People see me and don’t think or know all that I have had to do just to be able to go to dinner or the movies. I have to do a treatment right before I go so that hopefully it will last throughout the whole time I will be out and about. What you don’t see is me waking up coughing, doing breathing treatments, coughing up lung cookies/smurfs/lung butter (whatever you wanna call it…lol) all the time, taking medicines and resting! I try (doesn’t work but I still try) to not cough as much when I am out and about because people tend to look at me like I have the Ebola virus, avian flu or some deadly contagious thing. I know I don’t “look sick” and that’s why people are always saying, “Oh Shannon but you look so good.” I want to say come spend a day with me. I think there are some people that it doesn’t register that I am sick for the above reason and then they don’t know what to say or do when I am in Club Med or on IV’s. For instance I was in Club Med in February and then on home iv’s for 6 weeks. I was just back in Club Med in August and on home IV‟s for 3 weeks and then oral antibiotics for 3 more weeks. I average about 3-5 Club Med trips a year. If it is a bad time I am in more often than that. There has been many times that the amount of time on IV’s and hospital trips are more than time off.
I hope you know that I am not saying I want anyone to feel sorry for me; I just want to educate people about CF and the person who has to live with it. Heck even understanding those caretakers, like moms, dads, significant others, grandparents, friends, whoever helps the person with CF.
Hey if I have to be better at asking for help what better way than to put out there what I have to do every day. I know we all go on with our busy lives and forget that there are people in our lives that need us. I am guilty of this. Part of my problem is kind of twisted I am always worried about others and forget to take care of myself. I am learning to focus on me especially since I am in the next stage of CF.
Sorry that was a long rant, I don’t even know where that came from. Oh well now it’s out there…lol!
Thursday, October 2, 2008 12:48 PM, CDT
I am sitting here smoking my pipe, doing the shake shake, and coughing up some lung cookies, smurfs, lung butta, whatever you wanna call it…lol!
I have talked with some friends and family about their feelings about me having CF and the new things I have to venture into next week and even in the future with lung transplant. Let me just tell you…you are not the only one who is scared, I am too! I know that you all try to be strong for me and don’t let your feelings show. I would rather you tell me “I am scared,” “I don’t know what to say,” “I don’t know what to do,” “I don’t understand.” Trust me all the feelings you are feeling, I am feeling them too! If you don’t know what to say/do, tell me you don’t know what to say/do. This is my first life with CF so I don’t know what really to expect, except from what I see and know from other CFer’s. I respect when those things above are said because then I don’t have to act like I have it all together…lol!
There are certain things in this journey with CF that I am not necessarily looking forward to. One of those things has been a bronch and another is being on oxygen 24/7. I always adapt to whatever happens but that doesn’t mean I am a pro at this.
Yes I am strong and I just keep fighting but sometimes I just want to take a break from all of this. There are times that I just want to be “normal,” whatever the heck that is.
I know there are people who support and love me but are kind of scared. I say to you all, once again, you are not alone in the fear of the unknown. I am right there with you. Just please be with me right by my side as we go through this journey in my life with CF together. I usually only shed my tears of fear with a chosen few and then they in turn try to be the strong ones and not cry, but I know that they are crying in one way or another.
Until next time…
Monday, October 6, 2008 8:50 PM, CDT
This ICU stuff is not cool. The toilet is attached to the wall in the room, nope that’s right no door no privacy. Oh wait I forgot there is a curtain, whoo hoo! Ok now to the real update. I am in my room and loving it, was that convincing, I didn’t think so…lol! My port is accessed for tomorrow. I of course have answered the same questions about 5 times and I am sure that there will be more, gotta love a teaching hospital. My bronch is scheduled for tomorrow at 1pm-ish unless my doctor changes his mind and does it earlier in the day. I obviously will not be with it tomorrow because I will be sedated for the bronch. Jason may update you’all after the bronch is done, but don’t hold me to it.
This should be an interesting night; after all it is the ICU. This is my first time in ICU so it is a little weird, ok a lot weird.
Until next time…
Tuesday, October 7, 2008 5:29 PM, CDT
This is Jason updating Shannon’s journal for her. The doctor’s just completed her bronchoscopy and everything went well. The doc didn’t find any major mucus plugs to suck out, but he was able to obtain good culture samples. We should know in the next few days exactly what bugs have made a home in her lungs. She is wheezing quite a bit from the procedure, so they want to keep her on the vent. Hopefully they can extubate sometime tonight or early tomorrow morning. That’s all the info I have right now. I will stay at her bedside throughout the night and one of us will update with more info when we have it. As Shannon would say, “Until next time…”
Wednesday, October 8, 2008 10:49 AM, CDT
Shannon is awake, extubated, and doing marvelous. She told me to tell everyone thank you for the thoughts and prayers. On a side note, I would also like to give my thanks. Caring Bridge has become such a healthy and important avenue for Shannon’s expression. I appreciate everyday that Shannon can go online and vent her feelings, and that she has others that share in this process with her. Well, to use my own parting words… peace and chicken grease.
Wednesday, October 8, 2008 5:58 PM, CDT
Shannon here. I feel like crap!!! The vent sucked big time. My throat is so sore. I am short of breath just sitting here. I am not going home today. My lung functions were FEV1 1.28 / 41% which is why I am still here. My doc wanted them to be at least 1.60-1.70 and as you can see they were nowhere close. I have to stay in ICU which sucks. It looks like I will not be going anywhere until my lung functions are up. I am not a happy camper. This bronch was supposed to help me and now I feel worse…ahhhhhhh! I just want to feel better. Thank you for all of your love and support.
Until next time…
Thursday, October 9, 2008 9:26 PM, CDT
I am home. I got paroled around 4pm and then had to drive about an hour and half home, it was rush hour.
This might be a little long post so be warned now…lol! The bronch and vent sucked so much. My fear of the bronch came true this week. Like I have said before I have a few fears with the progression of CF and a bronch was one and I had to live it. Well my asthma was acting up really bad and I was wheezing a lot and taking me off the vent was not a good idea. They had to continue to suction me throughout the night while I was on the vent and I have a picture of the stuff they sucked out. It is amazing to see what crap is in my lungs and I still am breathing, not breathing normal but I am still breathing!
Until next time…
Tuesday, October 14, 2008 4:34 PM, CDT
Transplant: No I am not being tested or listed for transplant, yet. I am just preparing for whatever the future may hold and if given the opportunity I will have a transplant. I will take the chance to get even more years out of this body, with the selfless gift of organ donation! Which reminds me if you are not an organ donor, please sign up NOW! I know many many people’s lives that have been saved due to organ donation. One day it will be what gives me another chance at life, so please become a donor today. Visit this link http://www.organdonor.gov/donor/index.htm.
Until next time…
Wednesday, January 14, 2009 7:30 PM, CST
Today I had my post-op follow up from my tubaligation and everything was just grand! At least something is good on/in me…LOL! My CF nurse called me today about my labs and my eosinophils were 16% (normal range is 0%-5%). That is pretty high. The eosinophils show if your body is reacting to something, like having an allergy to something, maybe a medicine or also can be stuff in the environment. Basically my body does not like something right now. Also my creatinine was a little high at 1.15 (normal range .4-1.0) which means my kidneys are working a little hard. This is a prime example of why I don’t want to be on antibiotics so much. My kidneys and liver suffer due to the amount and frequency of antibiotics and other medicines I take.
My doctor told me to stop the Bactrim but continue the Avelox and Minocycline, he thinks it could be the Bactrim causing the raise in my eosinophils. It is not something new that my eosinophils levels are high while I am sick, this has happened before more than once. Now the trick is to figure out what is causing it and what to do to fix it. I am having my labs drawn again on Friday to check the levels again and we will go from there.
Until next time…
Sunday, February 1, 2009 10:00 AM, CST
Happy Birthday to me!!! I am 29 today!!! I love birthdays because it means I have hit yet another milestone in life with CF.
Tuesday, April 14, 2009 9:03 PM, CDT
Finally I saw the ENT today and guess what not much said, surprise surprise! He said that my sinuses looked pretty good. I do have polyps on my right side. He cleaned out both sides. I will give you a rundown of what the ENT appointment entails. They spray afrain and numbing medicine in each side of your nose. Then they use a little scope to look in each side and it feels like they are looking at your brain. Then if they see anything that needs to come out they then put in a suction thing while the scope is in there too. Now that feels like they are sucking your brains out. I know it sounds like so much fun and you are sad that you didn’t have this done today too.
I have a sinus CT scheduled for June 15th. That will be the true test to see how my sinuses really are since the ENT can only see so far without hurting me. I see the ENT again on July 7th. I hopefully will know more then. Me being the nosey person I am, I will ask to see my CT scans before I leave the CT room. I asked if he thought I needed surgery and his response was that we would see how I am after 2 months of upping my irrigations, nose sprays and the CT.
Until next time…
Thursday, May 7, 2009 4:29 PM, CDT
I went for an abdominal x-ray and labs today. My labs were all good but the x-ray was a different story. Surprise surprise I still have pooh in there that needs to get the boot. People have been asking if I am pooping yet. What I didn’t realize is that you can poop and be constipated at the same time. Well I learned that lesson last time I had to do Go-Lytely about a year ago. So to answer your question YES I am pooping but obviously it is not all coming out. Once again I get to do another gallon of Go-Lytely, making the total 3 gallons so far. I will probably have to go for another x-ray tomorrow or Monday if I don’t feel like everything is out. My doctor and nurse are still trying to figure out why I am having this problem. The amount of enzymes I take has gone down a lot and I don’t always take them. If this gallon doesn’t do its job then I might have to see a GI doc and be scoped, oh so much fun. This is just ridiculous!!! I like food too much to not be able to eat certain things. I guess I may just have to drink prune juice and eat whatever else to make everything not pass go and head south…hahaha! I’m sure there will be more info to come in a few hours. There is nothing like sipping on my Go-Lytely and kool-aid cocktail while watching Grey’s Anatomy. All I have to say is I might have to move the TV into the bathroom…hahaha! Until next time…
Wednesday, June 24, 2009 3:57 PM, CDT
“Cough cough, wheeze wheeze, oh what a pain in the butt it is!” (Sang in the tune of the Alka-seltzer commercial) I have been coughing a lot more over the last week or so. I gave in and emailed my nurse letting her know and asking what we want to do. I told her that maybe we should up my prednisone and see if that helps. My sputum has not been increased and it has not really changed in color. Of course I can have an array of colors throughout the day but as long as it is not always dark that means no real change to me. You can cough up stuff from different parts of the lung and that can be the change in color. My doctor agreed with my “care plan,” since I should have a degree and all…hahaha! He upped my prednisone to 20mg for 3 days, 15mg for 3 days, 10mg for 3 days, and then back to 5mg per day. If that doesn’t do the trick then we will re-evaluate and then think about doing antibiotics. I hope this will do the trick and will give me energy and lung power for this weekend since we are moving. My nurse said, “Well I will give you something that will give you the energy and make you eat oh and make you more irritable, so Jason may be calling me to yell at me!” Hahaha, she’s so funny! Until next time…
Friday, August 28, 2009 3:43 PM, CDT
Hello all! First of all no more blood, as of yet. I exercised yesterday, today and of course I walked for 3 hours while at Worlds of Fun on Tuesday.
I have still managed to sleep without ambien which is great. I am still tired but not like I didn’t get enough sleep tired just worn out. That’s ok I am resting and pushing through it. Have you ever just felt like you wish you could go to sleep and wake up when everything is better? I have felt like that many a times. I wish I could wake up when I am all “better” but I might be asleep for a really long time and I don’t want to miss out on life. I have talked to a few people recently about life sucking and depression and all that fun stuff. I know that uhhh, blah, I don’t care feeling all too well. I try my darndest to look beyond the right now and see what will be. My motto for life is NEVER GIVE UP!!! I don’t know if there is anyone who is feeling the depression monster right now but know that you are not alone. You are not a bad person if you need medicine to help you through it, of course with a doctor’s prescription. When you deal with a chronic illness yourself or even of a loved one it is normal to get a little overwhelmed with life. Ok I am done being Dr. Phil but just know you are not alone with the blah feeling. I am so thankful for Jason, the kids, my family and friends.
Until next time…
Friday, October 2, 2009 1:52 PM, CDT
I figured I would write about something that has been on my heart and I think about a lot…What is the difference between being the sick person and being those who love the sick person? I know all about being the sick one and how it feels and what it is like to be looking out. I don’t know what it is like being the one who is looking in. I know that being sick sucks and I wish that I wasn’t sick. I have such a big heart and don’t want anyone hurting and worrying about me but I also know that is wishful thinking. I don’t like needing people to do anything for me. I have slowly but surely let Jason in on my to do list which he is great at. I wish I could do everything for myself but reality sits in quickly when I start to do all that I want to do. It is very humbling needing someone, it is a major adjustment. On the other side of that, not looking sick some or a lot of people don’t get it. Not looking sick is a blessing at times and a curse at times. No matter how cute I look (hehe) my lungs are not cute, they are very stubborn. Being in the hospital is part of my life. There are people who say they don’t like hospitals and that is why they don’t visit people in the hospital, well news flash who likes hospitals. For those of us that the hospital is our second home we don’t like it either but we do what we have to, to stay alive. We don’t like having to do all that we have to everyday just to stay on this side of the dirt. I’m sure those of you who love us are scared for the what the future holds just like us. It is ok to voice your fears because you are human and if you keep them inside you might just burst and that would be a mess. I am scared too of what the future holds, of how long is my future, of what good am I as I get sicker, etc. Many things go through my mind and I just have to keep going. We need a support system, the more the merrier. It is ok to not know what to say, so say just that. Guess what we don’t know what to say all the time either. All of this sick/genetic/incurable disease stuff is no fun but I just have to deal with what has been given to me. My plan is to ride on top of it and not under it even though there are times that it gets the best of me. I have had to come to the realization that where I am, most likely is my new baseline. My lung functions will probably not get back up to 2.00 FEV1 or over. As CF progresses things will change and be different from the way they have been in the past. The whole reason I am accepting this is if I get better than I will be overjoyed but if I don’t I won’t be disappointed. I have a lot to live for and no matter the number of freak out moments I have I will climb back up to the top and keep going.
Until next time…
Monday, November 2, 2009 10:54 AM, CST
Now onto some other stuff in my brain….Have you ever woken up in the morning and thought, “there’s nothing important for me to do today so why even get out of bed?” I have had many mornings where I wake up and think about what I need to do and it seems I don’t have anything. When you go from working a full-time job, then cut down to part-time and then have to quit all together, what is next? When you work you have stuff to do and keep you busy during your full/part-time day, you were important and mattered to someone or a company. Then when you have to quit, what will fulfill your days and who will you be important to? This is yet another changing stage in life with CF. Even if you have never worked, as time goes on and CF progresses you think about how you will fill your day to keep busy and “important.” Many times I have not wanted to get up out of bed because I felt like I had nothing important to do. I think you tend to lose yourself value as your energy/breathing level decreases or whenever you are (I am) sick. My view of what people see as my value and worth seems to go down when I don’t feel good or when I don’t feel like I have anything to do that matters. No I’m not trying to say I’m not important because I know I am but that doesn’t negate the fact that I can feel very blah and not motivated to do much of or anything. If you have read any of my postings where I talk about “freak out” moments you know that whether you are sick or not “freak out” moments are normal. Many times I think “what the heck is all this, who am I to people, do I matter to them, would they even miss me, why do I keep doing this, this just plain sucks.” Don’t worry, I know that I matter and yes I know people would miss me but sometimes when you are in the thick of things it seems almost impossible see the other side. Until next time…
Monday, November 9, 2009 11:34 AM, CST
TIME…How much time do I have? Ok, I know after you read that line you automatically are thinking “Shannon, you have lots of time” and every other feel good kind of thing you can think of to say. How much time is one thing that goes through my mind quite often. Questions like, will I see the kid‟s graduate high school and college and see them get married and have kids? Will I be around to do all the things I want to accomplish in life or will time run out? There are things that I want to do in life and I want to be able to enjoy them to the fullest. I am turning 30 February 1st and I can’t wait! When I was born, the common/median age of CF patients was 12 yrs old. The “life expectancy” of CFers has gone up over the years and is now around 37 year old. When I have reached the median age, the age has gone up, so that means it has 7 years to increase more…hehehe. Making it to 30 years old is AWESOME and an accomplishment and I am stoked! I will finally be out of my 20’s and starting on the 30’s, heading for the 40’s. Sometimes it is hard to plan stuff in the future because I never know if I will be sick or not. For instance we are planning on taking a family vacation next winter and I have to try my best to be healthy and good to go. I usually can “pre-game it” with anti’s or a tune up to help me get to my destination. I am pretty stubborn when it comes to getting to live life and not letting CF stop me. There are things that Jason and I want to do in life and I am determined to make them happen, or at least try my darndest. I’m not going to say I can’t do something just because the plan might get interrupted due to CF stuff, I will plan it and we will work around anything that might come up. With all that said, it is scary to know that your time is going to be shorter than you want. Just let me put this out there too…I say that my time is shorter and people automatically say “nobody knows when they are going to die, you don’t know that it will be shorter.” Well my genetics tell me something different and that is fine. I didn’t say I was giving in or giving up; I am pushing through to keep me around as long as I can. I know people want to say those things to try to make “things better” but the facts are that CF is a progressive disease and there is no cure yet. I will make the best of the time I do have no matter how long or short that is. No, I don’t think I’m dying soon but I do know that I am actively trying to extend the time between now and then. I may have 1 foot in the grave but don’t push me in yet…hehehe. (Bad but still funny) Like I said we have plans and the show must go on, no giving in or giving up but I am entitled to my freak out moments. I am excited to see what the future holds and to see all the things we can accomplish. Thank you to all my friends and family for your support and love.
Until next time…(tomorrow since that is when I see the boss man)
Friday, November 27, 2009 6:39 AM, CST
After doing IV’s, a treatment, eating a little something, looking through the black Friday adds and chatting with Jason a little I went back to bed. Jason came in and snuggled up next to me to let me know we needed to get ready to leave to go to his brother’s house for lunch. And as I do I procrastinated getting out of bed but so did he. We were laying there talking and he asked if I liked any of the rings that were in the ads (because we were joking about the really ugly ones) and I said ‘yeah’ and he pulled out a little red box and said ‘well do you like this one?’ My jaw dropped and my eyes got big! He said, ‘I am thankful for you and I want to spend the rest of my life with you…will you marry me?’ I paused about 1.5 seconds to take in what was happening and then of course said YES YES YES followed by a kiss and WOW! I couldn’t have asked for a better Thanksgiving Day. See there was a reason that I said I was thankful for Jason twice yesterday and that I could keep going, but this was before I knew what he had up his sleeve…hahaha! So we got ready and headed off to his brothers for lunch and of course we were late but I think we have a good reason. Then after we stuffed ourselves there we headed over to my dad’s house where we thought we would get there just in time for dessert but like my families fashion they too were running behind so we had yet another ‘linner’/dinner. YUMMY is all I have to say! After all of that stuffing goodness we went to see “Couples Retreat.” It was funny. Then we finally made it home after being gone all day. Gotta love doing IV’s while sitting with the family eating Thanksgiving dinner and then again in the car on the way to the movie. Hey we gotta do what we gotta do to have a life! I just wanted to share the GREAT news with all of you! I know your first question and no we don’t have a date set yet. Trust me I will let you all know when the time comes.
Until next time…
Thursday, December 3, 2009 2:42 PM, CST
I am almost done with the acid beeper challenge…hahaha! It is funny when I start coughing Jason will say “hit your button, keep hitting it!” I told him that I think during a coughing fit I should just hold it down but then they might think I was dying. I guess it would be obvious when I walk in to turn in the beeper that I am in fact still living and breathing. It was so nice to do my last IV last night and deaccess my port…ahhhh! Taking the tegaderm (clear stuff over the port when the needle is in) off is like when you have an itch and you scratch it really good and it feels oh so good. We have set a wedding date. The big day is May 29th, 2010!!!
Until next time…
Tuesday, December 15, 2009 7:40 PM, CST
The boss man finally called me with the Bravo-acid reflux results a few minutes ago. Survey says………I have bad acid reflux! It is consistent with other CFer’s whose acid reflux is more active while upright than when laying down like “normal” population. Whatever “normal” is, we still have yet to figure that one out, we just know that I am anything but normal…hahaha! He of course had to rub it in my face that he was right and I was wrong. He loves it when he is right and he lets me know it every chance he gets. I am going to continue on the Prilosec twice a day. We upped it to the twice a day when I started the oral Cipro last week. The Cipro is making my tummy rumble. I feel like I could throw up most of the day and nothing sounds good to eat. I will endure it because it means I am not in the hospital. I am on Cipro until next Wednesday…uh I can do it. I have not felt the greatest but that is most likely because of the Cipro. I see the boss man again on January 12th and we will talk about surgery for the acid reflux then. I will have to get scheduled to see a surgeon to be evaluated for the surgery. Most of the work is done since I have already done the Bravo-acid reflux test so hopefully it won’t take forever to get it done.
Until next time…
Wednesday, December 23, 2009 9:41 PM, CST
Hello on this eve of Christmas Eve… My last dose of Cipro was Tuesday night, whoo hoo!!! Now if my tummy could get back to normal it would be great. Gotta love that Cipro kills everything, good and bad leaving you with nothing but nothing, or so to say. It will take about a week for my tummy to get back to at least what my normal is. Oh the joys of CF…Can’t poop one week and can’t stop the next. I know someone mentioned that I must not be having trouble sleeping since I haven’t talked about it. Well that is not the case. I still need ambien to help me get to sleep. When I try to not take it I literally lay there all night and ‘nap’ throughout the night and toss and turn. So I choose to take the ambien so that I have a chance of getting somewhat of a decent nights sleep. One of these days I may be off of prednisone and that will help with my sleep pattern. Now if I can be off of prednisone and anti’s at the same time that would be fabulous and better sleep would surely come my way. Now if my lungs can obey and be good for the next 6 months that would be great. I have too much going on, no sick time allowed. I need to be good to go for the wedding and honeymoon, no ifs ands or buts!! Have a great Christmas everyone and enjoy your families! Until next time…
Sunday, January 24, 2010 7:31 PM, CST
Last night Jason and I had our date night to celebrate our birthdays. First stop for the night was Kobe Japanese Steakhouse for a delicious dinner. Each table/grill seats 8-10 people so we were seated with others. We talked with the people at our table throughout dinner about military life, Jason’s travels while in the Air Force, recently getting engaged and other things. When dinner was finished the waitress brought the checks and we didn’t get one. The waitress said that our meal had been paid for. Instantly I looked around to see if anybody we knew was hiding. Come to find out that it was one of the people we were sitting with. The woman who paid said that she didn’t want anyone to know she had done it. She explained that she has always wanted to do that for a serviceman and began to have tears in her eyes. She then wanted hugs from us and then we went on our way. It was a very humbling dinner to say the least. Next stop for the evening was Howl at the Moon. It is a dueling piano bar where you can request songs and everyone sings along loudly and proudly. I was paying attention to the couple on the stage because it was their anniversary while Jason was paying at the door. When Jason was finished paying he said, “I think we should sit right there,” and pointed straight ahead and there was a group of my friends and family sitting there saying “SURPRISE!!!” I was completely surprised. I had no idea that anything was in the works for a surprise 30th birthday party for me. It was our date night so I didn’t think anything of it. I would say this is my most memorable birthday so far and it isn’t even my birthday for another week. Regardless it will be a memorable birthday just for the simple fact that I made it 30 years. I can’t wait to say I am 30 years old when someone asks my age. It was a great night. I enjoyed the company of those who were able to come. I feel like I didn’t get to talk to everyone enough. I tried to keep making rounds. Sorry if you didn’t get enough of me…hahaha. So 1 more week tomorrow until I am officially 30 years old and I can’t wait!!!
Until next time…
Monday, February 1, 2010 1:11 PM, CST
I am 30!!! Happy Birthday to me!! I made it to the milestone of turning 30 with CF, well it will be official at 3:05 this afternoon. Last night I went to bed and hard time going to sleep thinking about what turning 30 means. Yes it was kind of like the anticipation of going to Worlds of Fun (or whatever amusement park you have in your area) when you were a kid. I thought about the last 30 years and all that has been squished in those years. I remember when I was younger I thought 30 was so far away. I use to look at my aunt who is only 12 years older than me and think how cool it was to be her age. I remember when she was 30 and I said I couldn’t wait to be her age. There have been a lot of ups and down over the last 30 years and I wouldn’t change any of it if it changed where I am today. I am beyond blessed with Jason, the kids, my family and friends, even you slackers out there…hehehe. Saturday I was ironing downstairs and Gavin was playing Band Hero, the drums of course, and I just thought ‘man I am so lucky that I have all of this, we have it pretty darn good.’ Somehow I knew I would wake and feel different this morning because I am 30. I got up out of bed and Jason said Happy Birthday. My response was, “I made it, well maybe” because I was coughing a lot as usual with the mornings. Jason then said, “I guess we’ll see how the treatment goes.” I then said, “Yeah since I am not officially 30 until 3:05pm.” I love that we can joke around about stuff like that. Don’t get me wrong yes I am scared about the whole dying part of dying and leaving all of you behind but I think I will probably be cracking jokes until my last breath. My doctor and my nurse called me to tell me happy birthday. Then my doctor sang happy birthday to me, hehehe, he is a goofball. Then they asked how I was feeling and I said a little feverish over the last few days with no fever but just getting hot then cold. I said wait maybe I am going through menopause…hahaha! He said well get through and enjoy your birthday and we will talk about all that tomorrow. So doctors orders, ENJOY!!!
Monday, May 31, 2010 2:31 PM, CDT
Hello all!!! The update you have been waiting for…WEDDING DAY! (WARNING: it is a long one!) I am finally sitting down after a very busy weekend. Let’s see where to start….hmmm. Saturday we got up and had breakfast and got started on hair. We managed to stop for lunch to reenergize but then it was back to the beautifying process. We all got out the door and to the winery on time, go girls! We did pictures and hung out until the wedding started. I remembered about 10 min before I was supposed to be walking down the aisle that I needed to do a treatment since the next chance I would have would be like mid-night. Breathe, breathe, and breathe!!! Off I went down the aisle. I realized I forgot my vows in the bridal room as I got to the altar. I turned to my sister and told her and off Brandy went running to get them. Luckily Jason went first. I turned to my sister hoping that the vows were there when it was my turn and they were. You girls are awesome! We exchanged rings. We were pronounced man and wife and kissed and off we went up the aisle. The wedding party went into hiding so the guests could go to get drinks and chit chat while we did pictures. While we were waiting Payton came over to me crying and of course I started crying. Jason asked her if they were happy tears and she said yes. So we had our moment as a family with tears and hugs which was a very special moment and it got captured in a picture. We did all of the rest of the pictures and joined our guests. We ate yummy food. Jason’s godfather Rex who was the best man gave his toast and then it was my sister‟s turn. She is not a public speaker and does not like to do it. So yes we were in tears. I seriously couldn’t ask for a better sister. We defiantly went through our not so friendly years but it was all worth it to be where we are now. I love you Jiffner!!! After all of that emotional stuff it was time to dance our first dance. We danced to “The Way You Look Tonight” by Tony Bennett. We then cut the cake which was beyond beautiful and yummy. Next was the father-daughter dance to “How You’ve Grown” by 10,000 Maniacs. Payton and Jason joined us after we started dancing. Next was mother-son dance to “I am Your Child” by Barry Manilow. Gavin and I joined in after a little bit. Next was the “Dollar Dance.” We had some frequent flyers in the lines; they kept coming back for more which was fine by us since it was the dollar dance and all. I tossed my bouquet and Brandy, one of my bridesmaids, caught it. Jason dove in for my garter, even put on his sunglasses to get the job done…haha! He tossed the garter and the single guy’s separated…haha, it was funny but then Scott decided he would take the chance and pick it up. We love you Bubba. Now the dance floor was open. We danced and danced and danced. It was a lot of fun! Honestly we couldn’t have asked for a better day. It was great to see everyone there. I am so sorry if I didn’t get to talk to you. I saw people that I never had a chance to say hi too. So to you, thank you so much for coming and celebrating our day with us. After the reception was coming to an end we were off to our house. It just happened that there was a UFC fight on that night and we like UFC so we invited people over to watch the fight. So our house was full once again. We don’t mind, we like it. We love having people over. Until next time…
Wednesday, July 28, 2010 9:52 PM, CDT
I hate CF today because… I went for a walk and my lungs did not play by the rules. I was huffing and puffing and wanting to fall over but I pushed through and finished. When I got to a hill I seriously almost called Jason to come get me. It was no fun at all!!! I did finish and I was not in a good mood when I did and I couldn’t very well voice that without wanting to cough because of the huffing and puffing. As far as how I am feeling. I am still achy so I will be calling my nurse tomorrow to let her know how I am feeling, that is if I am not cured in the morning. I don’t want to get worse over the weekend because I boycott the ER. Not that I am heading there or anything but I choose not to frequent the ER at all if I have anything to do with it. I think my sinuses are draining because I am clearing my throat more. I am irrigating my sinuses. I am not coughing up anything worth noting, nothing dark or in great amounts.
Until next time…
Tuesday, February 1, 2011 6:52 PM, CST
HAPPY HAPPY 31st BIRTHDAY TO ME!!!!! God gave me 22 inches of snow, 10 foot snow drifts and cold toes today for my birthday. I don’t think it is too funny, he knows I hate snow and cold…hehe. I am told that there was blizzard like conditions 31 years ago on the day I was born. What a way to celebrate.
Until the next time…
Monday, August 15, 2011 8:19 PM, CDT
I have had a juicy productive cough for a while now and I kept willing it away. Dang it, it didn’t work! I also had some chest/lung pain (not like heart attack but lung pain) off and on for a few days. It wasn’t being phased by ibuprofen which usually means it is not muscle-skeletal but more likely is an infection brewing. I have pulled many muscles over the years from coughing. So yes I was hoping it was just another pulled muscle.
Anyhow I finally emailed my nurse telling her my symptoms (i.e.; juicy, productive cough with darker and more sputum). I told her what orals I had on hand and how much I have. That would give them time to mail me scripts to get filled on base for free rather than an outside pharmacy where I would have to pay a copay. I already have an appointment on September 1st so I just want to make it until then. She emailed me back and said start the oral anti’s and she will mail me out scripts. Of course if I start feeling worse to let them know otherwise I will see them on the 1st. I am hoping to ward off whatever is brewing in there and avoid IV’s. Ya know me, no time to be sick!
That’s all for now. Until next time…
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