My blog.

This is my blog. I write it for others. Why should I have to moderate it for others and delete posts that tell people about myself and what's really going on in my life? I will not delete another post again. Sorry, moment of anger.

Sunburn!

Today was great! I got out in the open fresh air! I got to swim! I got to see my family! I got a sunburn! Oh, how sweet life is.

Home, sweet home.

So as you all may know by now, I am home! Finally. Three weeks in the hospital wasn't so bad when I look back on it. I still have 2 months and almost 2 weeks of summer left to go! Now we'll see if I really have that much left to go. I have a doctor appointment with my orthopedic doctor, Dr. Cohen, in July. At this appointment, I will tell him about how awesome my arm is not feeling, and perhaps there could be a removal of a plate from my bone. That means surgery! Oh dear. But I'm sure that it won't be half as bad as getting the plate put in. We'll see what he says. I was told by him that if my arm still hurt a year after, than taking out a plate may be a possibility. Also, taking out the plate may improve my range of motion in my wrist. I currently can't turn it over without a severe amount of pain. This makes taking change very tricky.

Aside from the arm, I feel just O.K. Not amazing, as I wish I did. Being back outside and able to be free has left me vulnerable to allergens. Just tonight I was outside for a little bit and in the public to go to the mall. While watching a movie, I started to have the same troubles breathing as I did prior to going into the hospital. From this I concluded one thing: There's no hope. Haha. All around me there are particles sparking my allergies. Allergies spark my asthma. Asthma sparks my CF. CF sparks... oh you get the picture. It's just no good. So far, after one day being home, it's taken a lot to get used to doing my meds and pills and checking my blood sugar the way I should, but I'm doing it so far. One of my nurses, Stephanie, told me I better keep it up for her. She was an amazing person. So kind and generous. She viewed me as a person, not as just another patient. She was refreshing, and I do plan to keep up everything for her, and for me of course. But overall I aim to please others in most cases.

I was talking to my best friend Jen tonight, and we got talking about a boy that I passed in the hospital who was going for a lung transplant. She asked me if it ever got that bad if I would do it. I personally am not so sure I would like to, but if anyone that I truly cared about wanted me to, I would do it for them. If my disease ever progressed that much, there wouldn't be much of a life for me to live, and I'm not sure I'd want to prolong something like that. If someone I cared about wanted me to attempt to take new lungs, I would only do it for their sake. Jen thinks I'm crazy. I think I am just trying to help everyone around me cope a little bit better. I try to be strong for those who can't be. I try not to cry for those who can't take it. I talk about good when others can only see and feel the grief and anger regarding the disease I am fighting. But ultimately, as Dumbledore says, "We must try not to sink beneath our anguish, Harry, but battle on."

Adios, computer!

I've just gotten news that my computer is being confiscated! For another patient of course. I get out tomorrow, and I won't be writing as often because I will finally be able to live my summer the way I would like to. Rather than writing to pass the time, I will be able to be with friends and family after three weeks of treatment. I felt the treatment didn't do much. Once I'm home, I think I'll feel better.

Talkin' to the man.

Dr. Schidlow! There's a reason he is as successful as he is. He is so incredibly smart and I trust his opinions more than anyone I know when it comes to doctors. He has been with my for my whole life. I asked him to take time out of his day today to come visit me, and he almost sounded happy to hear from me. He was up within the hour, and we talked. I voiced my concerns about the condition I am in possibly being my "new healthy". He said that it is a possibility, but in all actuality, it is too soon to tell. He said that because I had let myself go so badly and for so long, it will take a longer time for my body to stabilize, and after it does that, then the treatments will kick in.

He is always very good at explaining things in a way that I can understand. I feel that with a nursing background, I see the seriousness of things when they are explained more in depth. Regardless, he eased my mind and made me feel a lot better about the situation. It is a possibility that this steady lower lung function might just be due to how out of control my diabetes was.

So last night I was not able to sleep due to too much caffeine. Yes, shame on me. To pass the time that I couldn't sleep, I read my medical chart. When I told my social worker this fact today, she looked at me like I had three heads. She really likes to take action against every single thing I say and do, so I thought there would be consequences. Of course there is not because it is my personal information. She is the same woman that banned my friend from coming last time. I told her my friend Will had CF and was coming to visit like he had done before. She then proceeded to tell me that if he showed up, he would be escorted out by security. It's almost as if she cares about everything a little too much. Such as reading my chart. Maybe I would read something that would throw me over the edge. That wasn't the case of course because my doctors really tell me everything.

Also, an update on Twin Tiers Idol. My mother got in contact with Patty, the woman who runs it, but it was one day too late. She was more than happy to put me in, but since they had already made the final decisions and sent the names to the newspaper, she couldn't change anything. I called her and asked her to think of me in case anyone was unable to do it. She took my number, and now all I have to do is hope that someone has some special event that they forgot about. Wouldn't that be great? For me of course, not for that other person. Well, that's the update from my hospital bed. Bolster, out.

Twin Tiers Idol.

I was just thinking, now that the auditions have passed, I really wanted to be in it this year, even if I said I didn't. Next year, I won't be able to do it, so this was my last chance. I'm a bit sad. But at least this time I won't have to worry about it. I wonder if I can get in touch with someone.

No news is good news.

Except for this news!

1) My PFT's came up by 2%, which essentially is no change. BUT...
2) I'm coming home on Friday!! I told the doctor that I felt like I wasn't making much progress and I think this is the best I'm going to be, so she has agreed to let me go home on Friday.
3) I'm not coming home on IV's!
4) Dr. Talbert said I could keep my port accessed until Friday instead of reaccessing it on Wednesday just to keep it in for 2 days. That's a little less pain and a little more happiness!
5) We're stopping the Reglan! No more shaking, and it didn't make me feel less distended anyway, so there was really no point for it after all.
6) One of my antibiotics was changed due to what the doctor thought was an allergic reaction to it.
7) I now have a prescription written for Benadryl if I need it in the next few days, and it helps me sleep when I'm tired. Fabulous.
8) Sadly, my weight is not topping out at any given weight. I've gained 12 pounds and counting. But it doesn't matter because...

Soon I will be home! I will be swimming! I will be at the lake! I will be with friends! I will be biking! I will be going to graduation parties! The weight will melt off, at least what I have gained while I was in here.

What a positive update! I think I'm going to celebrate with a nap.

The rash continues!

So lately when I wake up in the morning, I've been getting really itchy arms and legs. It happens after I take 2 of my medications, so we have to figure out what is causing it. It started happening yesterday morning, and I thought the rash that was showing up was evidence of me scratching so hard, but it showed up on my knees this morning before I started itching, so it is not from scratching.

All day yesterday and the night before, I did not get IV meds. The nurse set up the IV setup incorrectly and all of my medications were backing up into the saline bag. That's not good. So not only did I miss a whole day of antibiotics, but whatever bit of antibiotics I did get were all mixed together, which is what they try not to do. Maybe that is the reason that I'm getting a rash.

Today I do PFT's and then I will see how my breathing is coming along. I'm starting to think that maybe the disease is starting to take it's course, in a way. The point of the disease is to progressively lose lung function. Maybe this is my new healthy. If it is, then it's going to take some getting used to.

I talked to my friend Kate last night on the phone. She just recently got in a big car accident and broke her leg. It wasn't her driving, it was her sister. But it wasn't their fault. The guy that hit them was going 60mph in a 25mph zone. She also has CF, and after she had her surgeries, she had to get transferred from her hospital at home to a children's hospital in Pittsburgh. What happened was all the pain meds were slowing her respirations so badly that her pulsox was dropping to extreme lows and she couldn't breathe. When she told her nurse at the hospital back home, the nurse proceeded to tell her that she was just saying she couldn't breathe for attention. What is the world coming to these days?

I'll apologize now if I don't write as much. The medication I'm getting to help my stomach makes me so incredibly shaky that it makes it difficult to type. Everything is going pretty well so far aside from the antibiotic mishap. My sugars are under control for the most part even with eating what I want in moderation. I am proof that you don't have to cut out what you love in order to keep yourself healthy and your sugars under control.

Boredom strikes again!

This weekend my parents came. I didn't realize JUST how much I missed them. This is the reason I will never be far from home. I plan on working at St. Christopher's after all, I believe. Not to mention they sometimes need an element of passion added here. I have had a nurse come in and tell me not to get into pediatric nursing. Why she was even working, I don't know. She still works here and I have a mild dislike for her ever since she said that to me. I guess I don't understand how you could get into a line of work and hate the population you work with. You shouldn't have a job that makes you unhappy. It makes passing the time absolutely miserable.

So today I took a walk for nearly half an hour. I was tired before the walk. I am equally tired after the walk. I found out that stairs make my legs all wobbly. Who knew that laying in bed for 2 weeks and taking the elevator for all up and down actions could leave my legs all weak and wobbly. Haha. I'm watching One Tree Hill now. I didn't even know the show still existed. One of the guys on the show turned into a caveman apparently. I have found a new hobby these days. Looking online for things I could never buy! It's really fun internet browsing. But as for now, I am going to try and take another nap. I already took a 2 hour nap today. What's a couple more?

That one holiday.

Happy Father's Day all!

I'll write more tomorrow after my PFT's, because as of now, I have no new news. But Happy Father's Day to all the dad's, or dad's-to-be!!

<3

YAY!!!

Mom and dad come today!!!

There's a reason dial-up is an ancient concept.

So, as I usually write at night about my day, I went to do so again last night. What seemed to be the problem? I could not get online! In no way at all was I able to write to my fellow waiting fans! My phone cord was messed up and the nurse was the most unhelpful person ever and blew it off. So I decided to use my own laptop and use the wireless that somehow allows me to write in my blog. No luck! The wireless networks weren't connecting any longer for me. The world of internet was against me writing in my blog last night.

But this morning! I finally had a nurse that listened to me, and she brought me a new phone cord. Voila! It was that simple, and the nurse last night blamed it on the hospital shutting off the phones at a certain hour. 7:30 at night? I think that is a bit early. She disagreed. She was wrong. Jerk. OK, enough ranting about the nurses.

Nothing new really occurred since the last blog. I feel as though the antibiotics are slowly starting to take a little bit of effect. I'm gaining weight at a terribly fast speed because I eat so often here and get out of my room for real exercise about 1-2 times per week. My sugars are coming under control, and Dr. Steinfeld said he doesn't want me out of here until my sugars have been under control for a length of time. I'm making things I never used to do a habit, so maybe they will carry on when I get home. No, they definitely will. I'll just have to take away some eating and add some moving around. Dropping weight should happen pretty quickly.

Something new and amazing did occur this morning though!! After waking up and spilling a drink all over me/my bed and having to remake it so early in the morning, I was a little erked. But who did I see in the morning that made it all better? Both Dr. Steinfeld and Dr. Schidlow!! Yes, that's right. My primary doctor out here that I haven't seen in mooonths. Maybe even a year or so. He is the head of the hospital and is therefore constantly busy, but he made time to come and talk to me and see me before a ceremony for the graduating residents. How nice. He did not preach to me for the first time in my life. He gave me the pathophysiology of my diabetes as opposed to telling me why it's bad I'm not treating it. That helped me a lot because I understood why I was constantly tired and unable to concentrate. He also told me a lot of stuff I didn't know, such as not taking care of my sugars can lead to more fat production, lower metabolism, and if it gets too out of control, it can lead to a fatty liver, where fat just piles up in the liver. Noooo goooood. He told me that he thinks that the doctors need to focus more on the pathophysiology of the diseases rather than just preaching to me.

Good stuff, I tell ya. So my plan for the day is to get cleaned up, remake my bed with my dry blanket back on it, and relax. But for now, breakfast!

The Scoop.

This was supposed to be posted last night but there was a glitch. The internet booted me and I can't reconnect after about 10 or 11 pm. But here is the post meant for last night!

So it's about 9:30 right now starting this blog, and at 10:00, Animal Cops comes on, so I figure I will write all of this right now while I'm not distracted. This is what has happened and what I have found out in the past day and a half:

1) My PFT's stayed the same at a mere 62%. They actually said that when I did my PFT's a month ago, they were at 63%. That's barely any difference, but it is not an improvement.
2) Due to my PFT's, I am now on two completely different antibiotics. What they found was that the two most common strains of the bug that I carry in my lungs work in the following way: Strain 1 is sensitive to antibiotics A and B but resistant to antibiotics C and D. Strain 2 is just the opposite. They tried treating strain 1 with A and B, but it didn't do the job as well as trying to treat strain 2 with C and D may do. I hope that didn't confuse you. Anyway you look at it, I am on new antibiotics, so it is like starting from square one.
3) I will be here at least (Dr. Steinfeld put emphasis on "at least") 1 more week.
4) I was put on another pill to help my stomach empty faster, therefore possibly decreasing my stomach distension. So far so good.
5) Dairy has been removed from my diet.
6) The dietitian wants me to create a diet/exercise plan at home that includes: exercising 60 minutes a day, cutting down portion size, cutting out all unhealthy foods, only eating healthy snacks, and drinking 2 glasses of water before every meal. I am one woman! One thing at a time, lady!
7) I had my port reaccessed. I left on the numbing cream before hand for nearly 3 hours, and I did not feel a thing when it was reaccessed. The nurse that did it was doing it for the first time. I could tell. A nurse can't keep secrets from a future nurse. He did very well though and I was very proud of him.
8) Patrick and his mom came to visit!!! That was the highlight of the night. They got lost after going the wrong direction for a while, but they got here when visiting hours were over and stayed for an hour. Hahaha. My nurses are understanding. They brought me books: Pitch Black by Frank Lauria, Species II by Yvonne Nevarro, Cold Mountain by Charles Frazier, and A Million Little Pieces by James Frey. I'm still working on His Dark Materials by Philip Pullman, but it's getting interesting quickly so I'm trying to go through it fast. He also brought me a book called "Secret Soup". Apparently when I was in kindergarten, it was my favorite book. I don't remember it!!! I'm terrible.

As for updates, that's all I can think of! I'm in a far better mood now than I was when I found out about my PFT's. I guess that's always a plus!!

Depression.

I have a few minutes before I go down to eat with Sharmane from the playroom, so I'll write a bit about my opinions. My views on depression, people have found controversial. Though I am not denying the fact that it may be real, I do not feel as though it should be medicated. If you really think about it, there is one thing in everyone's life that makes them very content and happy, no matter the situation. I feel that too much of a good thing, is a good thing. Medications should not be needed if you can hone in on that one thing, or possibly several things, that make you happy!

I suppose I should clarify now that at times it is hard in here, and I may have complaints, but I never feel it is so bad that I can not emotionally handle it. I have a very strong sense of myself and what I can handle, and it is a lot. I have never been depressed, but I have had my down days. More like down moments in all truthfulness. Earlier today, I was down about my PFT's and staying here longer, but after about 30 minutes, I was over it, and I'm now accepting that the most beneficial thing for me is to be here, getting the proper care I need, so I don't miss out on the rest of my summer.

Moral of the story: If you remain positive, everything will be positive. You may have your moments when you feel like you can't handle a situation, but if you look at the brighter side of things (and there is always a brighter side!), you will have a much more fulfilling life!!

Confessions of a teenage blogger.

I don't think the antibiotics are working.

I have worked more diligently this time than any other stay in my past, and I am not getting better. I took more PFT's today, and at first, my numbers were the worst I have seen them in a very long time, but then slowly they crept up to be at the same exact place that I was one month ago. Something isn't working because my lung function isn't changing, I'm constantly exhausted, and my sugars are still fluctuating with a new and improved highly-concentrated-sugar-free diet. I'm pretty positive as of now that I will not get to any of the graduation parties that I was so excited for. I missed all of my friends actual graduations as well.

This is not a plea for pity, but missing out on the things you want to do so badly is not how life should go, especially not when you are giving it your all. I am giving so much this admission, and getting nothing in return. No. This is no pity party, I swear to you. I want none. I just am voicing frustration at the quality of care I am getting. I could have made this much progress just staying at home. If I was at home, I would be going to my friends' graduations and parties, not to mention spending time with my family. My cousin Meredith came home for a while from Arizona... WHILE I was out here! I miss her so much and I want to see her, because it has honestly been years. Her sister Margaux (also my cousin obviously) had her baby... WHILE I was out here! Granted she lives 2 hours from me us near Williamsport, but it would have been nice to been around.

As I get older, I begin to see how much coming all the way out here affects me. I'm away from friends, family, and fun. But if I look at the positive side of things, I gain friendships out here. Everyone in the playroom staff has become someone I can depend on, whether it be to just come in on their off time to hang out, or to bring me something I need that I can't get myself. In fact, Leslie brought me pineapple today!! I always have to order whole fruit platters to get 2 pieces of pineapple. Now I have 2 cans of my own pineapple to snack on when I'm in the playroom. They are too good to me. I love and miss everyone, and I want to thank everyone who reads my blog because it's a bit of insight into my life, and when I hear the positive thoughts from everyone, it makes being out here and dealing with all of the things I have to deal with so much easier.

Same old, same old.

Today I talked to Dr. Steinfeld. They are removing HIGHLY concentrated sugars from my diet. Oh yay. I'm sure it is only for the better. Already I did not drink my juice this morning, and my sugars were in the hundreds for both breakfast and lunch. At dinner they took a nasty spike into the 300's though. It was a mystery to me why they did that until I realized that they were mixing one of my antibiotics with 5% Dextrose, which in essence is sugar water. Brilliant. Way to go pharmacy!

I realize these blogs are getting terribly boring, but there is not much to write about when your schedule every day is the same. I play Skip-Bo daily (a card game) and watch at least a movie a day. Apparently sinus surgery is not out of the question, but the doc doubts they will do it during this stay due to my sugars fluctuating so terribly. I can't help that if they inject me with sugar water. Haha. Tomorrow I go for more PFT's (pulmonary function tests) to see if my lung function is improving. If it is, we will probably stay on the course that I am on. If not, then we will have to change something up. I have a feeling they will be the same tomorrow as they were when I came in because I feel entirely filled with mucus in my chest and none of it is moving at all, even when I try to physically get it out.

All of the doctors and nurses say I sound great when they listen to me, but feeling great is the issue. I feel like I am nearly having a repeat of my hospital stay over Christmas. If that is the case, it's a good thing I have the whole summer to get back to normal, though I would not want to have the whole summer. I've been spending a lot of my time brainstorming a father's day gift. Of course my dad's only response when I asked him what he wanted, (and don't say nothing!) was "Oh, I really thought about this and I want nothing." Bravo, dad. I'm gettin' you jewelry.

Because I forget easily.

I never remembered to put the address on here once I found it out, so here it is!

Toni Bolster
Room 495
St Christopher's Hospital for Children
E. Erie Ave. & N. Front St.
Philadelphia, PA 19134

Daily regimen... and other stuff, too!

So I said last night that I would write today about what my daily regimen is in here when I am trying to get healthy. Here goes!

8:00 AM:
Wake up, get weighed, get vital signs (temperature, pulse, respirations, blood pressure, pulsox), do Albuterol treatment (10 minutes to open the airways), do Pulmozyme treatment (10 minutes to break up the mucus), do Vest (10 minutes to remove and shake out the mucus), take pills (ADEK for vitamins I don't absorb, Prilosec for acid reflux, Claritin for allergies, Actigal for my gallbladder, Miralax to keep my intestines moving), and finally do my nasal sprays (Flonase to reduce swelling in the sinuses, "Deep Sea" saline to flush out my packed sinuses.

8:30 AM or so:
Take enzymes (5 for meals, 5 for snacks to help me absorb fats and nutrients that I don't normally absorb), test my blood sugar, take my insulin (I'm up to 42 units at breakfast... jeepers), EAT!!

12:00 PM or so:
Repeat Albuterol, vest, and saline nasal spray. Get hooked up to IV's (About 2-3 hours depending on how much the nurse remembers from the last time she took care of me...the bags are always overfilled and therefore require more time). Usually have labs drawn as well.

12:30 PM or so:
Enzymes, blood sugar, EAT!!

2:00 PM:
Enzymes, snack and playroom! Usually meet up with all of my doctors between now and 4:00.

4:00 PM:
Repeat Albuterol, vest, and saline nasal spray.

5:30 PM:
Enzymes, blood sugar, insulin, IV meds again.

7:00 PM:
Usually time to sneak over to visit the cool nurses that aren't on my wing! If not, then I'm in the playroom!

8:00 PM:
Repeat whole entire morning ritual plus another snack. Only pills include ADEK and Actigal.

10:30 PM:
Cafeteria opens, and I'm usually starved, so I get food. If I don't get hungry, I give my card to a nurse I like to get some free food. I know, I'm way generous... Haha. Not.

That is basically my day in a nutshell. And at 2AM, I get hooked up to IV's again. I also get more nebulizers and nasal spray every four hours that I continue to be awake after 8PM, so I try to be in bed by midnight. It is far easier to get all this treatment in the hospital, because after adding up all of the time it takes me to get my treatments done, I would be spending 8 or more hours each day taking care of myself. It is far easier to do it here due to the fact that I have nothing better to do, and I can't go anywhere and do anything extremely fun anyways.

So today, there was still not a lot new. I feel the same still, except my nose is a bit stuffier. I'm going to blame that on the saline nasal spray because I believe it may be flushing stuff out of my deeper sinuses and into my nose. My port has been a bit tender, so I can't wait for it to get reaccessed because I really feel it needs to be taken out. There's not a very speedy blood return and it stings a bit when putting a flush in it.

I talked to Dr. Steinfeld today and told him that my enzymes felt as if they were having no more effect on me. I'm getting distended again and I'm extremely hungry all the time. He said that it is a possibility with my sugars being so high that I could have paresis of my intestines, meaning they aren't moving food through too well or they are dramatically slowed down. He said he was going to talk to my nutritionist and talk about removing all concentrated sugars from my diet. No more popsicles, soda, candy, etc. I got yelled at by my endocrine doctor today when he walked in on me in the playroom eating a Strawberry yogurt. If I'm not supposed to eat my concentrated sugars, and apparently yogurt is no good either, what am I supposed to eat? Dog food? I know. I'm exaggerating. If Dr. Steinfeld tells me I need to do something though, I will listen, because he is my favorite doctor of all time. If I have to give up my Pepsi that Jose is sneaking up with my 8PM snack, then I will. But yogurt is important to me when I'm on antibiotics, so they really shouldn't take that away.

The only other thing that needs to be mentioned is my ability to single-handedly attract creepy volunteers. Years ago when I was about 13 I attracted a 25 year old volunteer which then was not allowed to come back because of his inappropriateness that, if you don't already know about, I won't tell you about on here. Today in the playroom, a volunteer from laundry barged in and was nice enough, playing with the kids, except he wasn't allowed to be just wandering around the hospital at his will. I didn't talk to him the whole time. When the playroom closed, he asked if he could walk me back to my room. I wasn't going to say "Absolutely NOT!!" So he walked me back to my room, and then walked in without invite. He talked to me for a while and told him his life story. I wanted to come back to my room and read.

The aide came in to take my vitals and I showed her my 'get him out of here' face. She asked him to leave to do vitals, and then I acted like I was too sick to talk and layed down in the dark. She told him I wasn't feeling well and he left. When he was in my room though, he asked for my Myspace, my Facebook, and my cell number. I gave him none, but told the playroom staff what he asked. He basically got in trouble for being inappropriate with a patient, a.k.a. me. A volunteer should not be asking for a patient's number. In other words, he hit on me, and that's against hospital policy, I'm sure.

Anyways, that's been my day! And that's all.

Commenting!

Just so you all know, when you comment, you won't be able to see your comment appear until I approve it! I moderate all of my comments to make sure no one is being a hater. I have a few enemies in this blogging community... Haha. We tend to disagree on life a bit I suppose. So don't get downtrodden if your comment doesn't show. I just have to approve it when I log back in to write again!

Harry Potter keeps me sane.

I have been watching Harry Potter for the past few hours. I really think it keeps me together when I'm in here. It's always a new joy, even if I've seen it a hundred times. I think pretty soon I'm going to be in the mood to read! My doctor said that the book I've started that includes the Golden Compass is very good. He said it's definitely not for children though because it has a lot to do with religion and the lack of it. I don't see why that's not for children, I mean they made it into a movie?

Nothing really new today, so this will be a brief entry. Dr. Steinfeld is my doctor for I believe the next week. He is my favorite doctor because he is younger and has amazing taste in music and movies and books. I'd marry him if he wasn't already married, with children. He is the doctor that always burns me CD's of new music he thinks I will like, and he is always correct. I think I need to give him some suggestions for a change. He was going to bring in Iron Man for me to watch, but I told him I had already seen it. That was a great movie. I'd recommend it to all of you reading!

I'm going to try and go to bed now. I have been sleeping a lot throughout the day. I've been absolutely exhausted, and weekends are a good time for me to try and catch up on sleep. Tomorrow I think I may write and explain my regimen for my days here in the hospital. There's a lot to it, and even though I have time to do things like watch movies and write in here, there really isn't much time at all. I just realized today that I spend 40 minutes of my day doing my vest alone. It should be longer, approximately 60 minutes, but I figure 40 minutes every day of clearance is a lot in general, so I don't feel bad about it. Shaking like crazy every four hours is not my idea of fun, but sleep is. Good night!!

Oh, Esiason!

I thought I would do a quick blog entry to mention two things!

First of all, Happy birthday nana! I love you and I miss you!

Second of all, I just saw a commercial with Boomer and Gunnar Esiason for Sears. It was a commercial about Father's Day. But I guess from what I can understand if you buy certain appliances from Sears, some money goes toward a foundation they have. I'm sure some of that money goes to research for CF. Awesome.

I feel so special that I talk to Gunnar and he was on TV. No, he just seems to be a really nice kid.

Fabulous. Off to dinner with Marilyn and others!

Today is Friday.

One week ago I came in. One week ago I felt crappy. One week later, I still feel crappy.

I can't seem to understand. I am doing all of my meds and treatments like an amazingly compliant patient. The only thing I'd rather not comply with is the Asian intern who is too soft spoken. It irritates me to no end. Irritation reminds me of my lungs. They are refusing to take deep breaths because they are so irritated. Last night at around 11 pm I realized I wasn't breathing too well. It felt like my lungs were full of mucus and it was all dried on, therefore incapable of moving. So I asked for a treatment. At nearly 12 am my treatment came.

By this time I was feeling worse than I did when I had first asked. I took the treatment, which the respiratory therapist took about 50 hours to hook up. I had been coughing before the treatment came and I could not stop. Every time I coughed, my machine would beep because the pressure made my port and setup for my pump occlude. So that was frustrating me to no end. So while I am struggling to breath, I have to keep making my pump stop alarming. Anyway, the treatment came, and I coughed and coughed and coughed. Essentially it did nothing. I sparked myself into what felt like an asthma attack and I couldn't breathe. I swear the nurses were oblivious to my loud gasping for air. No one heard me. I rang my call bell and they finally came in.

This is when I finally saw some hustle. I was breathing a million miles a minute, I couldn't calm down. In a matter of ten minutes I had both nurses working the floor in my room, two doctors I had never seen before, the aide hooking up my pulsox and heart monitor, and the X-ray technician. It took nearly half an hour for me to be able to breathe better again, but I didn't end up sleeping until nearly 2 in the morning due to all of this. I'm glad they could finally catch a glimpse of what I was dealing with before I came in here.

I was peeved when they noted in my chart that I had a "panic attack". What? They did not mention the difficulty breathing in the beginning. They did not mention the asthma like symptoms. They contributed my fast breathing and sweating due to my naturally high body temperature, to a panic attack. *Smacks self in the head* I somehow knew they would do that when the doctor asked me while I was hyperventilating if I was stressed out or if school was stressing me out. School's over. I have nothing to be stressed about now. Why would I be having these attacks if I had no stress. I wasn't anxious. I'm not a mental case here. Let's look at the physiology, doc.

Anyway, that was my eventful night. I feel the most tired and irritated that I have in a while. The ENT doctors came in today to talk to me. They said that with people with chronic lung conditions, often times they avoid doing sinus surgery at all costs. They said my maxillary sinuses, basically under the eyes, were completely full. They said my ethmoid sinuses near the front were full on the left side. But after talking they decided to put me on some other nasal spray to flush them out. We'll see how that works. I'll do it every four hours and apparently all the snot in there will magically disappear. One can only hope.

My respiratory doctor came in the morning. He didn't have much to say, but when I told him what occurred last night, he looked like he was doubting everything I was saying. I don't know what's going on here, but I feel like no one believes me. I told them my lungs were irritated, almost like breathing in cold air in the winter when I tried to take a deep breath. He looked at me weird. I told him I was doing my vest, but I didn't feel like it was doing any good. He suggested chest pt. I told him I have really sensitive skin every time I start on IV's. He looked at me weird. I told him the treatment made me cough and it didn't really help my breathing. He looked at me weird. I mentioned that the hypertonic saline treatments spark my asthma attacks. He looked at me weird. I'm sorry if I'm not what you are used to, but it's no good to lie about how and what I feel. What good would that do me here?

If they were experiencing what I feel, they would understand far better.

I did PFT's today earlier. They did not go up, but rather declined a tiny bit. Not really enough to say so though. I have to do them again after my treatment so that my doctor can see how much treatments help. If they make my numbers increase, then there is a lot of asthma going on. I hope they increase so I can shove it in his face. These are not panic attacks I have been having. They are asthma attacks. We'll see how it goes.

I also thought I would mention a little bit about my old friend Luis. He suffered from Asthma and I met him in the hospital. We became really good friends and would always play cards together. When I left, we wrote to each other and always talked about possibly visiting each other. I saw him about one more time when I was in. He came to visit me when Leslie, a woman who works in the playroom, called him and told him I was in. He lived about 5 minutes away from the hospital. His family was always great to me. He was honestly the first friend I had met and kept from the hospital. As some of you may or may not know, back in January he was involved in a car accident and died at the scene. I believe he was only 17 years old. There were 6 people in the car. Three kids died. The other three were injured. It wasn't their fault. A driver sped through an intersection without stopping.

I was talking to Leslie the other day in the playroom and we got talking about Luis. He was like a son to her because her boys and him were the same age. He was always at her house and he wasn't even considered a friend of the family. She was basically his second mom. Anyways, Leslie was telling me about him. The time that I was in back in December I sent him a little note online through her phone because I had lost touch with him. That was about one to two weeks before he passed. Leslie said that when he got that note from me, he called her and was so excited. Leslie said that Luis just loved me, and every time I was in he was always excited to know that I was close by if he was able to make the visit. He didn't get a chance to come when I was in over Christmas, but Leslie said he was thinking about me. It just made me really happy to know that I was on his mind even when I was not physically there. It's nice to have had a friend like that.

Well, it's time to do PFTs again and get washed up. I hope this made up for not writing yesterday. :o) I miss everyone.

Extremely quick update.

I feel far too tired to write. But quick update.

I had a CT scan today and my sinuses are full, as my doctor suspected. The ear/nose/throat doctor came in while I was gone. They will come back tomorrow to name my fate. That's really it. Time for bed.

Lousy start to the day.

This morning did not start of well at all. At around 6 a.m. I was finishing up an IV med and I rolled over and knew instantly that I had popped the needle out of my port. Normally something like this would not bother me if it had not happened multiple times before. This port is the worst thing to happen to me in my treatment, I'm pretty sure. But I guess if this is as bad as it gets, it's not really so bad. It all seems more frustrating than it really is when I have to wake up after a small amount of sleep, I'm sure.

I decided that since my needle was out, I was going to take a shower while I had the chance, so at 6:15 this morning I was taking a shower. They let me sleep again until 8 because they knew I was tired and upset and the only med I had to get on time was an antibiotic at 9 because they had to draw levels of it from my port. One of my previous nurses, Sue, accessed my port with a bigger needle to see if it might be different, and she got it first shot. I love Sue. I was talking to her and during my field experience for school, I was thinking of working at St. Christopher's and she said she would definitely take me under her wing. She even said that she had a friend that hosted people all of the time so I might even be able to get hooked up with a place to stay. That is far down the line though. We'll have to see how it works out.

I have to say that this stay is opening my eyes. First the enzymes, then realizing the possibility behind my poor concentration may be my sugars. I should not have to just be realizing these things after nearly 20 years of my life. I'm killing myself. I need to start realizing what the consequences are for not complying, aside from the occasional lecture. Too many people care and worry about me for me to keep blowing things off because I think they aren't as important as other things. Everything is connected, and as a future nurse I know this, I just need to convince myself of it. I think this stay is doing a good job at it.

My respiratory doctor came in today with not a whole lot of new news, but she wants me to get a CT scan tomorrow to look at my sinuses. She changed the date because if my sinuses are full, she wants to have Friday to consult with ENT (ear, nose, throat) about clearing them out. I'm hoping it's really not that bad. I was actually surprised at how set on this they are this time.

I stopped my pump today. I'm starting shots again, just 2 a day, and it's going to take some getting used to again. Every time I get up from bed, I get about a foot away from the bed and stop in my tracks thinking I'm dragging my insulin pump behind me. I think ultimately this may have to be the way I go because it truly is less work. My sugars have been really high today, but it is the first time trying this insulin mixture, so they are just planning on increasing the dose until it suits my eating habits. Also, when I go home, they may have to adjust the dose as well because I won't eat as often. When I'm in school again, I'm sure they will have to adjust it again because I rarely eat during the day when I'm in school.

I talked to a guy in the playroom today named Rocky. Rocky works with musicians. He sings himself, and he's my new favorite person. He has worked with greats such as Elton John, Barbara Streisand, Billy Joel, and one that I was baffled to hear: Michael Buble. He was surprised he got a reaction out of me when he said Michael Buble because he thought no one my age would know and like him. I love him. He's a tenor and I believe he sounds like... I think they are called crooners? Yeah. He has an amazing voice. Anyways, this guy Rocky helped Michael record his album and was backup for him. AMAZING. Rocky called his wife as soon as he found out I liked him and his wife is burning me all of his CDs and I'm going to get them tomorrow. Exciting! He also said that if I was ever in town and he was having a concert, to get a hold of him and he would set it up so I could meet him. I think this is a long shot but I'm going to believe he's telling the truth and dream that one day I will actually do something like that. He also showed me a necklace he had (Rocky) and he said Michael gave it to him as a gift for helping him record backup. So technically I touched something that Michael Buble touched. Oh sweet!

If you would like to know who he is, just look him up on youtube. His song Home is one you would like as well as Everything.

Well, I'm off. Have to do my vest.

Looong day.

Today was a really long day. Like I mentioned, I woke up early and got around. I had breakfast. I had lunch. I went to the playroom. I went down for physical therapy. I had to leave the playroom about 3 times for multiple reasons. We were playing skip-bo, the ultimate card game. Rawley came to visit mid game. After I finished up the game, we went back to my room. It was about 1 1/2 hours of talk and then I was feeling extremely tired. He left. He brought me a bouquet of flowers and some candy. It was nice of him, but unfortunately I really wasn't in the mood for any guests today.

Anyways... I was pulled from my playtime by both my doctor and my endocrine doctor. I am being taken off of my insulin pump. They are putting me on an insulin that includes both short acting and long acting. I will only need 2 shots a day, and I won't have to cover for high blood sugars. That sounds good to me. I think at this point I would rather have 2 shots a day than having to maintain my sugar and fiddle with my pump for every single thing I eat. I find that after seeing both points, both pump and no pump, I have a better idea of what I'm capable of keeping up. The doctor said that he thought 2 shots a day would work better for me because a pump is more work than any other option out there. I agreed. My endocrine doctor was from Iran, and he was awesome. He's new, and his accent is amazing.

My respiratory doctor said nothing different, except she expressed concern about the fact that my sinus headaches were not going away. By Friday I will know whether she wants to look at it deeper. She also talked to me about my sugars, but gave me an extra tidbit of information. She told me my HgbA1C, which is a test that tells you about your blood sugars over the past few months, was 12.5. To most, that doesn't make sense. This is a terrible number. It is supposed to be around 5-6. This means my sugar has been twice as high as it should be for nearly the past 3 months. Bad. She told me that my HgbA1C was the highest she had ever seen in any CF patient. Double bad. How embarrassing. I'm beginning to think this is the reason behind my inability to concentrate and comprehend anything as of late.

Day...4? Maybe 5.

Good morning everyone! Today I intentionally woke up pretty early to get cleaned up. I was ready to go by about 8:15. I really hate having to get cleaned up in here because it's just difficult to not get my port wet, and if I don't want to cover it, then I have to be more careful. Right now I'm finishing up my vest and watching Maury. It's an episode of girls age 13-15 years old that are ruining their lives by joining gangs and having sex and disrespecting their parents and siblings. I guess I don't understand. They are responsible for their own actions, but I think the parents have a lot of influence on their child's life. Aren't you glad I'm not on Maury? Haha. Never would be. It's filth, I know, but I finished the whole Lord of the Rings series and I watch TV now. A lot.

I haven't been much up to reading since I've been in here. I was going to write last night but it turns out that after 10pm, this computer doesn't like to cooperate and it wouldn't let me open anything. Of course, I have all of my plugs in my room occupied by SOMETHING so I couldn't even plug my laptop in to write. I guess I didn't really have anything interesting to say. The endocrine doc came in and talked about possibly doing just 2 shots a day instead of the pump. I just find my pump so big and bulky. They are trying to introduce me to a wireless pump called the Omnipod, and I want that. I have also decided that enzymes are the way to go. Unfortunately, I'm gaining a lot of weight quickly in here, but the enzymes make it so I'm not as hungry all the time. They have become my miracle pill.

So I'm getting a guest today, and as of right now, I am exhausted. My nurse agreed to my dad's plan. If you don't know about it, ask him (if he even remembers). I'm honestly not up for any visitors today, regardless of who they are. I tried to go to the playroom last night and change up my routine a bit, maybe play a game of cards. Sadly, they decided not to show, so I just finished Lord of the Rings. I now have a new goal in life, and that is to marry someone that is Pippin's double. Pippin is a character in LOTR if you didn't know. He is my favorite ever. Basically I need a man with a strong Irish accent, lots of curly hair, and an uncanny sense of humor. That shouldn't be too hard to find.

There aren't any other CFers in here as far as I know. Last time I asked, the nurse said one just went home, and I was the only one left. They really don't value confidentiality in here. They drop patient's names to me all of the time. Tell me all about situations. I have a respiratory therapist who came in and told me all about the person he just had to help down in trauma, then went on to tell me all about how he and his wife were trying to have a baby and included a bit too many details about her tubal ligation and birth control regimen. I need to stop telling people I'm going to be a nurse. They think I want to hear about their wife's birth control and things associated with it. Ugh. He was too creepy.

Anywho, today I'm feeling a bit worse. My lungs feel very full and very tight, and my sinus headaches at night haven't been going away. They better go away fast because I don't want to have any type of sinus surgery at all. I hear it's painful, and I don't think my headaches are quite bad enough to warrant sinus surgery. Well, I must go. Social worker is here!

I've figured it out.

I figured out why this website works. Blogger is part of Google. Google website opens as well. Anything affiliated with Google is opening, but it doesn't help me because most pages wander away from Google when I get linked to them. I'm still not sure though why google is allowed to open.

Anyways. I have decent news. The childlife people came in and told me I could get a computer that is NOT child protected. It's new and it means I can go to the websites I like without being stopped. They recently got new laptops to give out to the kids in here so I may be able to get one. Also, it will be dialup so it will still be slower. BUT! I see a wireless router in the hallway out here so I will ask about possibly getting wireless set up on my computer. I don't see why they would have a new wireless router if no one was able to use it.

I talked to the doctor today about my stay. I asked about staying for only one week. She said it is truly up to me, but being summer and having no job, it is the opportune time to get healthy. My healthcare professionals did a good job of convincing me completely that I would be on isolation the whole time I was in here due to the fact that the bugs I have had all my life are resistant to an antibiotic. I was talking to my friend Sara about this because she called me and my doctor came in as I was telling Sara that I would be confined to my room for my whole entire stay. The doctor interrupted me on the phone (I like her so it didn't bother me) and told me that I had to get the tests back first to find out if I was bound to my room. I told her what my nurse had told me and she said she would call infection control herself to verify whether or not I was allowed out of my room. I told her that if I was required to stay in my room for the whole stay, I was not going to stay past one week. She understood and agreed with my decision. I also told her if I was let out of my room, I would stay as long as she saw fit. I don't like having to depend on my nurses and aides to get me a milk, or a juice, or get my late night snack when I know I am perfectly capable of doing so.

I have a student nurse today. She only came in to check on me at 7 in the morning. I got blood drawn at just about 5:55 AM and wasn't able to truly fall back asleep after that. So needless to say, I've been up a while, but at least I woke up in a bit more pleasant mood today. Crap. My chest is hurting. Why do the little things have to pop up when I think I'm finally on a positive path? Boo chest pain.

Quick update.

Out of nowhere tonight, I feel quite a bit better. I'm starting to take deep breaths and they aren't as irritating anymore. I feel like this is a very positive thing. I honestly just want to get out of here. I am tempted to ask the doctor if I can get out in only one week. It may be wise to do two weeks, but I feel like one week would be enough. I want to get out of here quickly, even after my excitement to get treated. I feel like summer is starting without me. I want to spend a lot of time with friends and family and at the lake, mostly. Until then, I'll continue watching Animal Cops and Law and Order: SVU.

Must add, I predicted something would definitely happen, and I must be psychic, because it's coming true...

Gah.

Good news.

Good news! My hair is ridiculously soft today. It's never soft in the hospital. That's all for good news. I just wanted to report something great. Well wait, I also got a TV for my room to hook up my Playstation so I can play my games and watch my movies. So that is also good news.

My respiratory doctor came in earlier and said there was really nothing that different. I'm waiting for my 10 AM meds, and it's nearly 11. Maybe I'll remind my nurse about them in front of a doctor. That'll show her. She isn't the most competent of the nurses that I have, and competency is a good quality to have as a nurse. I just figure the patient shouldn't have to remind the nurse to give them their medications. Oh well. Strike one. You have two more chances, nurse.

Maybe I will take that strike back because she did tell me in secret that the endocrine docs are making every nurse I have check to see if I am connected to my insulin pump every time they come in to my room. They are checking to see if I am a compliant patient. I guess I will be because I truly don't want another lecture. I wonder if I can refuse a lecture. I know I can refuse medications, but can I refuse a lecture that says the same thing as the day before? Hmmm...

I've decided it may be a good idea to wear a certain shirt that I can hide my pump in so when they accuse me of not wearing it, I can be all, "CHA! LOOK AT THIS, DOC!" Oh life. There are student nurses on the floor. And at first I decided not to have one because I wanted to sleep today and not be bothered, but now I really want one because they are all so very nice. They are only going for a 2 year degree, but they go only on weekends and to one class during the week for five hours. FIVE HOURS. I can't even last through a three hour class. They are brave souls. Sadly, they had already been assigned patients after they were DENIED by me. Stupid me. I can't have one now.