Hospitals

Well, I haven't updated in several days. I've been absolutely exhausted. My last post was about my upcoming Dr visit. Well I went and received exactly the news I was expecting. I haven't been well and am getting sick. My lung function is still amazingly well especially for a CFer. I'm still at 89% which really really shocked me! But for me that is still low. I use to always be at 99 or 100%! So we decided that it was time for a hospital stay, a "tune up".

Now, I haven't been hospitalized since I was 2 years old. With the exception of elective, scheduled surgeries. And even when I was 2 it was a sinus infection rather than lung infection. Right now it's kind of a combination of both.

My Dr's appointment was Wednesday. But with availability and whatnot at the hospital I wasn't admitted until Thursday. Which was totally ok with me. My boyfriend was also in Ft Worth last week so he took me out to dinner and then back to the hotel to watch a movie. After two months of dating that was actually our first real date. It was the best, the perfect night before a week in the hospital. It was quiet, didn't take a lot of energy, just what I needed to not stress out before coming in. So thanks to him for such a great evening. I'm pretty sure I've told him multiple times but if he reads this, I'm saying it again!

So the hospital stay: Thursday I got in and found out the plan. Get an IV to start antibiotics and wait till I can get a PICC line. Took two nurses and 3 attempts to finally get my IV and it was irritated the entire time I had it in. Then they started me on two antibiotics. The first was a newer antibiotic that they've found to be effective. I did fine with that. The second was Vancomycin. It is used for MRSA which I have and have had for several years now. But I've never been treated with IV antibiotics and Vanc only comes in IV form. The vanc was awful. I've never taken it before and I had an allergic reaction to it. If you've never had an allergic reaction I hope you never do! It was the most horrible experience I think I've ever had. What really sucks is it was made worse by the nurse taking care of me. Anyway, that made the first night a really not good night. And I didn't sleep, They came to put my PICC line in at 2am which I was not going to complain about because I wanted that IV out of my arm!!! But by Friday morning I was feeling better, just tired. I continued to get the first antibiotic they gave me and still had no problem with it. I had two friends and my aunt here all day friday to take care of me! (but i didn't sleep) Friday afternoon, Dr Davis came by and we discussed other options since I couldn't have the vanc. We decided on another antibiotic that is also very strong. It has done fine also. So yay for no more reactions!!! Friday night Laura stayed the night with me! And i got great sleep. However, Saturday I was exhausted. I think the new antibiotics, the reaction, the whole hospital stay all caught up with me while I was sleeping Friday night. So I did nothing but lounge. I napped, layed in bed and watched movies with Laura, and started reading a new book. Mom and my Uncle Wes and Christina all got here Saturday afternoon and brought me good food for supper! Taryn had to go back to Amarillo and Laura had things to do over the weekend as well. So I was glad to have my mom! Today has been better than yesterday. I'm still tired, but did get up and at least walk down to the cafeteria with mom. But I still slept and napped a lot of the day! And every day, I've done tons of breathing treatments. I get 4 at about 7:30-8 every morning, 1 at 12:00, 1 at 4:00, 3 at 8:00pm and 1 more at 11:00. That's a total of 10 breathing treatments a day, and 5 doses of antibiotics a day!! That might also explain why Im so tired!! So, I guess they are getting me well. Right now I'm just so tired it's hard to tell! No, really tho, I am feeling better. And the whole time I've been here my Aunt Daphne has been taking great care of me. She's brought me snacks, meals, washed my dirty clothes, and just been here. She's great!! And Taryn and her mom drove from amarillo/lubbock just to see me. And Laura has been here to lay in bed with me and watch movies and just be here. And then Uncle Wes and Christina came in for the weekend. And of course my mom!! Love the visitors!!

It's not the most exciting thing in the world, but I'm glad to be here. I know it's what I needed to get really well. And now when I get home, I'll have a little more energy and be into the habit more of doing all of these things on my own to keep myself well. Thanks to everyone for all of the encouragement, thoughts, and prayers that have been sent my way! It means alot to me and keeps me going while I'm here and will when I get home to!

Doctor Visits

Well I'm going to the Dr tomorrow. I wasn't scheduled to go until the 16th of December which is still two weeks away. But I haven't been feeling good. So, I called to see if they wanted to call me in something until I come (which I didn't really want them to do) or reschedule and "squeeze" me in this week. Turns out they could squeeze me in Wednesday! So, I set off to Ft Worth this morning, in the snow and rain, by myself, for the first time ever! I made it safe and sound with no problems. I don't like driving long distance!! But, I made it!

I'm curious, anxious, stressed, and a little worried about how this visit is going to go. I've been noncompliant (as I've said before) for almost all of my adult life. And recently, because of how I've felt, decided that I'm an adult now and must be in control of my health. Now, I'm paying for my stubborn noncompliance! I don't feel good at all, and I'm typically not one to complain. I have taken my good health for granted that's for sure. So now it's really time to get the ball rolling and not let it stop!

I will be sure and post how the appointment goes tomorrow as soon as I can! I've still been doing pretty good with the things I've been doing to take care of myself. Still only miss my sinus flushes occassionally. The vest CPT I'm still working on but better than I've ever been before and still getting better. And I'm doing great with all my pills. I remember my enzymes most of the time now, only forgetting once every other day or so and that's something I've Never been good with! So I'm still quite proud of myself. Hopefully the Dr sees that I'm serious about this and isn't to mad at me for my noncompliance! And hopefully he knows what's best to fix me now that I've started what feels like a little bit of a downward slide! He'll get me trecking back up the mountain soon!

Happy Turkey Day

It's been a week since I posted anything. And part of that is because I kinda slacked off. I thought that it would be harder for me to do all the treatments etc i have to do on days that I work and easier on days I'm off. Turns out I have it backwards. On days I work, I actually have a routine and a schedule, whereas days I'm off I never know what's going to be happening and what I'll be doing. So I had the weekend off and was fairly busy. So taking care of myself slid off the bench a little. I skipped two days of doing my sinus flushes and 4 days of my CPT which is not good. But I'm openly admitting it, which is what this is for. Something to hold me accountable and I can't lie! However, on a better note, I've gotten much better about taking the pills. I've remembered them at least over half but maybe not quite 3/4 of the time. Somewhere in between that! but that's an improvement and right now that's all I'm asking for is a little improvement. I'm still not feeling great on a daily basis and I'm a little worried about my visit to the Dr coming up in a few weeks. But I know that God will take care of me and no matter what happens I'll be ok and I don't need to worry about it!

On to other things. It's always appropriate on this day to remember what we are thankful for. God has done so many amazing things in my life over the last year and even more recently! I am so thankful for the new support system I've found online from other CFers!! It is so amazing to me that this huge support group was here that I never even thought about! Its wonderful! And I'm also very thankful for the support group I have locally! We don't get to see each other often but we always know there is someone there who understands it all. And since we've just started the planning for the CF walk next year I'm soo excited and have a new found motivation to make people aware! I'm soo pumped about it! I am so thankful for my family! They have done so much for me in the last 6 months: Let me move back into their house, then add a dog, then add a second dog, all my stuff, and i've taken a ton of their time and energy working at my house to get it ready for me to move in. And I know we've all gotten frustrated with each other at times but we know the love we have and we get over it very quickly. My parents have worked so hard and I can't thank them enough. My uncle has also spent many hours at my house doing the harder stuff that my mom and I don't have the equipment to do or the skills to do. He has worked very hard and donated his time and energy as well! My little brother isn't to bad either, he's helped out alot to!! I'm thankful for my health. I feel like its sliding downhill lately but I'm still much healthier than I could be. And I'm soooo thankful for that! And I'm thankful for my friends. They are there without fail anytime I need them. There for a good laugh, a shoulder to cry on, a night out, or a night in. Whatever I need, they are there! And I'm thankful for my job! I got to delivery the first baby on thanksgiving day (at covenant at least) around 1 am this morning. There's nothing like being there for the beginning of a new life! I love my job!! And of course, like many in the country right now, I'm thankful for the country I live in and that I have the ability to write whatever i want in this blog. Thanks to all the men and women who sacrifice their time, lives, family etc, to give us the freedom we have!

I guess I'll wrap it up with that! there are of course many more things I'm thankful for but those are the most prominent on my mind at the moment. Hope everyone has a wonderful Thanksgiving and remembers all that God has given us!

Great day today!!

I had a great day today, which is very surprising considering last night was my 3rd night at work and I only took a 2.5 hr nap after getting home from work this morning. Typically on my first day off after 3 in a row, I'm not a very nice person just because I'm tired and don't feel well. In fact, I'm pretty sure working nights has a lot to do with why I haven't felt as good lately and part of what led me to decide to start taking care of myself.

Moving on to why I had such a great day. I was very productive today, which just makes me feel good! Most of it was making a little progress on my house (most of this blogging will be about CF but everynow and then I'll throw in other things in my life like work, friends, and the house I've recently bought and am in the process of flipping, after all, there is more to me than just CF) But the best part came this evening. We had our first planning meeting for the CF walk that will be in May. Last year I was involved but only minimally because I was still in a fairly new relationship, was still pretty new at work, and was still trying to adjust to a lot of changes I had made in my life. This year I am much more stable and settled down. I am still in a Very new relationship (different one that last year for clarification) and am still about to change living situations, but I'm settled back in in Lubbock and very settled in at work. So this year I have a little more to dedicate to the walk. So I'm really pumped about it. I'm taking a bigger part in the planning and in making the community aware about CF and getting people involved. I used to be very shy! I never felt comfortable asking people to donate to the CF walk and things like that. I've finally realized that the community needs to be made more aware and the only way that's going to happen is if all of us CFers stand up and make them aware...this includes me! Besides, the worst that can happen is they can say no. So, this year I'm actively involved in getting sponsors and donations as well as going to be a media person and get to be on tv stations and radio shows to raise awareness about CF and the walk! I really am sooooo excited, I've been giddy about it all night! It's nice to be this excited about something that previously in my life, I haven't been so excited about.

It's great to say that I have a new perspective on CF. I won't say that I've ever hated it, but I've definitely not been excited about it. But thanks to a few people and events in recent months, I have a new outlook on it, and it's no longer something i "have to deal with" but something i "Get to do" and a way to inspire people and meet people. Maybe 24 yrs old is a little late to finally have this aspect on CF but better than never having it right? So, I'm glad that I finally have a better outlook, motivation, a great support system, and courage(?not sure that's really the word i want but i'm lacking the ability to find the right word on what little sleep i've had in the last 24 hours!) to get out there and be proactive!

Another good part of the night: I went to a presentation tonight put on by a group called "Invisible Children" A good friend of mine that I grew up with at church, Melissa, is a part of this group. They are raising awareness and support about/for a child army called the "Lord's Resistance Army" in Uganda(i think) and she's been touring Tx to rais awareness for the last 10 weeks. It was awesome to see her so passionate about something and dedicating her entire life for at least the last 10 weeks to this cause. This is something that she isn't even directly affected by but she is so passionate and proactive in this cause. It was great for me to see that. It just increases my motivation to raise awareness about CF even more!

Im so lucky to be blessed the way i am. God is truly amazing, and i've been sooo stubborn, but He's never given up on me and I know He never will.

Keep it up

So, Ive kept up with my promise from the last post. I've added in my vest percussion therapy treatments. I didn't actually think I'd start doing them until tomorrow because I've worked the last two nights and work again tonight, but I've done it for 3 days now! I wasn't sure that this would be very effective without the nebulizer medication treatments. But rest assured everyone, it still works! Maybe not as well, but it's definitely got me hacking a little more than usual. I'm such a weird CF patient. Most, as far as I know, are constantly coughing stuff up. They have a very productive cough. Me on the other hand, I just cough. Nothing ever comes up. My cough sounds horrible, like I'm an 80 yr old woman who's been smoking since I was 12. When I was in jr. high school, some how it came to be called my "smawckers coke" (i really don't even know how that's supposed to be spelled!) You know how sometimes you get talking to fast and mix up words?....I think that's where it came from. anyway, my cough has always been a good joke with my friends. But it was still atypical for a CFer because nothing ever comes from it. And Dr visits are never fun because you have to cough something up and it always takes me FOREVER!! and a few times i never could get anything and they just swab your throat, which is also no fun!! So, now, doing my vest treatments is really getting things moving and I've actually coughed some up. (sorry for any of you who aren't CFers, this post may be absolutely disgusting!!) And this is another reason I decided to start taking care of myself...I was actually coughing stuff up on my own sometimes. So I can't wait to see what happens when I get prescriptions refilled and actually have the medicine along with the vest!

As far as everything else goes, I'm still doing my sinus flushes, most days twice a day but sometimes just once. And still only remembering my enzymes about 1/3 of the time but working on it still!! If anyone has any suggestions as to how I can remember to take them, I would greatly appreciate it!! Nothing else is really new, I'm just very tired. Work is kinda kicking my butt!! I love my job and I wouldn't trade it for anything. But working nights is hard on anyone! So throw in a chronic illness and an already screwed up sleeping pattern and it's almost impossible sometimes. But I'm doing it and trying to sleep good during the day on the nights I work. And we just got our new schedules from now till mid december....I think it's really gonna kick my butt over the next four weeks. But we'll see how it goes!

Why I'm here

So, I've been wanting to do this whole blog thing for a while, but didn't really think I had a reason. However, I've found a reason in the last couple of weeks. I have Cystic Fibrosis. Up to this point in my life, I've been pretty fortunate with my health. CF is weird because there are so many variations in its severity. I have a pretty mild case. But I've had friends and known others who were very sick and some who died at a very young age. God has really blessed me!! Moving on, my reason for the blog in part is to hold myself accountable. I am very noncompliant with my healthcare. And by very, I mean completely. There have been many times in my post-highschool life that I've said, "Now I'm going to do it. I'm going to be compliant and take care of myself" And I have for a month, maybe two. And then it gets old or I get busy or whatev...I always have an excuse. But its never a good one! I'm an adult. I know how serious my disease is, and I know how fast it can turn upside down and my health can snowball downhill. And in the last 4-5 years, I haven't been as healthy as I was in highschool and before then. I don't feel as good as I could and I do get sick much easier than I used to. My cough is worse than its EVER been, I can hardly breath my sinuses are so clogged up, and I lose any ounce of energy I have very quickly. So, its time that I get serious about it and take care of myself. In the past, when I've committed to taking care of myself and being compliant, I've tried to do it all at once. The treatment I need to be doing is alot. I am supposed to take enzymes every time I eat to digest my food. I'm supposed to do 3-4 nebulizer breathing treatments two times a day, along with chest percussion therapy (CPT) with a vest. I'm supposed to do saline nasal flushes twice a day (my main problem with CF is CHRONIC sinus infections) And I'm supposed to take a variety of other medications including but not limited to: prilosec, calcium, advair, vitamins, mucinex, and off and on antibiotics and steriods. And I know there's something I'm leaving out, but since I've been noncompliant I can't remember what all there is right now. So trying to start all of that at once can be a little overwhelming and I have to say that's part of why my motivation never lasts more than a month or so. So, I'm a smart girl. I know that when you try something over and over again the same exact way and it never works-you need a new method. I haven't been to see my CF specialist since February (which is not good, that's far to long and they will not be happy with me when I go). But I'm scheduled to go in December (that's the soonest appointment I could get) So while I'm waiting to go, I don't have all of the medications I'm supposed to be on. I have some of the pills but not the breathing treatments. So my new method is, I need to take this a little at a time. Step 1: I started doing my saline nasal flushes about 2 weeks ago. I think I've only missed 2 days. And in the last week, I've even done it twice a day for 3-4 days. And, I've been taking most of my pills. The enzymes I haven't had every time I eat. Its not that I just don't do it, its that I just don't think about it. The thought really doesn't cross my mind that I just ate so I need to take medicine. But I'm working on it. So I have this step just about down!! Time for step 2. I'm going to start doing my CPT with my vest. I know it won't be as helpful without the breathing treatments. But if I can start getting myself into the habit of doing this, when I add the breathing treatments back in, it wont be so hard!

Point is, I know I'm lucky for how healthy I am. I don't deserve it, I really take my health for granted. But I AM going to do this. I'm going to be proactive in my healthcare. One day I hope to have a family of my own, and I have to be as healthy as possible if I want to be around for them. I know that I could lose my health in the passing of just a single day. That's not a risk I'm willing to take any longer. So, with this blog, I hope to have friends who will help hold me accountable, and help encourage me. Be my "cheerleaders" in the course of learning to be compliant and take care of myself. This is going to be a long road, but well worth it!! I'm ready for it!!