And now it starts.

I'm feeling the boredom, so I'm writing again. The same typical reaction has started when I come in the hospital. I'm not sure what causes it, but I typically get some extremely sore skin once I begin treatment. I am always forced to go to doing my vest or the percussor(a little machine run by air that vibrates) when my skin gets this sore. Also, about half an hour ago my symptoms that I came in with came back. This is a good thing in a way because now the doctors and nurses can get a better picture of what was going on to make me get admitted. They look at me crazy when I ask for more breathing treatments, as if I don't know what is best for myself when I'm unable to breathe. Oh well. They can think what they want, I know that it helps because it was the only thing that helped at home.

I suppose I can explain about my medications now as well. Basically what happened is a culture of the junk in my lungs was sent to a far away lab. They tested it against a multitude of antibiotics and got results back regarding it. It turns out I have multiple strains of a bug I always knew I had. They take the 3 most common strains that I have and look at them. They try to make sure they use the antibiotic that is sensitive to the largest numbers of my strain and use that. That is why my antibiotic has changed. What once worked best to kill the strains of the bug I have now is resistant against it. And that is the simplest version of that I can give.

Well, back to watching Animal Cops. So sad. So sad. Missing Abby and all of you.

<3

Sleeping was great.

Today I slept. A lot. Well a lot in here is about 2 whole hours straight. Mom went home around 1 and I instantly fell asleep. Anywho, you are probably looking for an update, so here goes:


I got a little bit of information today regarding my care. Yesterday, I had no idea what was going on. The doctor came in today and said that I would be put on one new IV medication called Amikacin, and on my normal IV med called Meropenem. Apparently my last cultures came back and said that a new medication was more effective at killing the bugs I have. I can attempt to explain this later. She also said that I would be in here most likely about two weeks. My sinuses have been giving me some headaches and she put me on a new steroidal nasal spray. She said that if I still have nasal problems by the end of the week, she would want to get a CT scan of my nasal passages, and if they are full, she would recommend sinus surgery. I will do everything in my power to avoid that decision. Also mentioned were my lung X-rays. They are not terrible, but they are a little worse than last time. I have some crackles in my right upper lung, which just indicates a bit of congestion. I'm hoping that my nebs and clearance therapy will be helpful in getting rid of that.


I have had a lot of doctors trying to learn on me, and I don't like them one bit. One doesn't put her self out there confidently, and nothing is worse than that. One doctor asked me a ton of questions about myself, but failed to relay information regarding my stay from one of my primary doctors. They better learn to do the job right pretty quickly, because as of right now, I don't want them/wouldn't trust them.


Got a lecture from my diabetes doctor about my pump. I hate my pump with a passion, and he recommends a new thing it is similar to a pump but it's wireless. Sounds much more convenient. I think I would be more likely to follow the doctor's suggestion if they didn't attack me every time they talked to me. Basically they will just follow my sugars and insulin and make changes as they see fit, which is what they do every time I come here.


So today I plan on watching Lord of the Rings. Just the first one. Maybe tomorrow I will watch the second, and the third the next day. I am on isolation for about 2-3 days until they prove I don't have MRSA or another bug I can give to others. It is a new policy. Every person who comes in here has to swabbed for communicable bugs. This puts us on isolation for a few days until the results come back. I just want to go and walk around and do things for myself like get a juice from the fridge or get some sun in the lobby downstairs. Oh well. I'll be here long enough to do those things in a few days. Just so people know, I don't have any internet in here, but I somehow get this to work. This is literally the only site that does work. I'm not sure exactly why. Anyway, if you feel like communicating, just hit comment under the entry you want to comment on, and sign in as anonymous. You can sign your name at the end if you like. I just really miss you all a lot and I would love to hear from you!

Ok, time for my nebulizers!

I have arrived!

Welcome to Philadelphia, self. I'm finally in my room, getting situated. I somehow have wireless right now though I didn't approximately 10 minutes ago. I don't know if this will last. Basically so far, the junior doctor has come in to ask a ton of questions, my nurse has come in to ask me the same exact questions, and now I'm waiting to get my port accessed to start my IV meds, go down to X-ray, get food, give a urine and sputum culture, and probably do some sacrificial ritual. Just kidding about the last part.


I only had to wait about 45 minutes for a room today, and that is the all time record. Mom is getting all of my stuff from the car to make my room feel more like my room. Yay momma. Just so everyone knows, or if they want to know, here is my contact information:


Cell: If you know me, you have it.

Room number: 1-215-427-4765

Address: I will figure it out and give it to you later. I'm in room 495 though if that helps anyone.


I must go now though. Need to make room for everyone! Updates later.

How it feels.

So one thing I was hoping to accomplish with this blog was to help people get a better understanding of how it felt to be me. Currently, I am awaiting a hospital stay tomorrow. I am sick and it is mostly feeling like asthma mixed in with a little bit of being completely worn out. So I am deciding to try and explain how it feels when I run out of breath. Earlier this morning I was playing with my dog. I was throwing a bottle around for her to catch and she started running around so I had to keep spinning in circles to catch up with her. I wasn't running. I wasn't jumping. I wasn't even doing anything exciting with her. But within 10 seconds, I felt like all of the air in my body had been exhausted. This is the way it usually is when I am sick.


I would imagine that everyone knows what it feels like to be out of breath after running. That is how I feel after doing simple tasks, such as putting my hair up, bending over to pick something up, getting out of bed. It is absolutely exhausting on so many levels. Something as simple as the tasks mentioned before start me into what feels like a severe asthma attack. It feels as though someone has put a hand over my mouth and is only letting me gasp for breaths, but these are my breaths at their deepest. It feels like coughing could help, and so I do, but it only makes the amount of pressure that hand has over my mouth increase. These attacks subside in anywhere from 10-30 minutes. They occur at least 3-4 times an hour.


This really only occurs when I'm sick, and I'm positive it will pass, but it is still very upsetting and scary when it does occur. My admission is scheduled for tomorrow, and it may be anywhere between 1-3 weeks. I am actually very happy to be going in and getting the help I need. My mom will take me up in the morning tomorrrow and stay the night because of the long drive. She will leave the next day. I have been waiting for this admission for months. There have been times when I didn't think I could make it to tomorrow to get admitted, and I probably shouldn't have, but school was not forgiving enough for my situation. I have been fatigued and fighting this for the past 2-2 1/2 months. It's finally time to get treated. For the first time in a long time, I'm very excited to be admitted. This summer will go my way, and I will be able to enjoy it like a normal teenager!! :o)

Food for thought.

My dad sent me this quote in my email today, and I love it, so I will post it.


Once you have started seeing the beauty of life, ugliness starts disappearing. If you start looking at life with joy, sadness starts disappearing. You cannot have heaven and hell together, you can have only one. It is your choice.


So true. So true.

I am a naturally happy person.

Welcome to my new blog! I basically decided to start a blog to write about my occasional situations in life, and how I handle my CF in a positive way.

My name is Toni. I'm currently 19 years old and I will be 20 in September.

When I was three months old, I was diagnosed with Cystic Fibrosis. I can't remember this, obviously, but from that time on, I learned to deal with it. I have been hospitalized all my life, anywhere from 1-4 times per year and occasionally more often. My hospital is 4 1/2 hours from home. I just recently convinced my parents to let me do my hospital stays alone. I also suffer from some very severe asthma. I have been in the hospital over pretty much every holiday, most recently Christmas, and I am thankful for the fact that they have kept me healthy enough to successfully celebrate that same holiday for another year. Aside from my respiratory problems, I was diagnosed with CF related diabetes (CFRD) when I was 12 or so. I'm dealing very well with all this.

Now that I've introduced you to the crappy part of my life, I'll tell you a little bit about myself in general. I am a happy person! I know that remaining positive can keep me on the right path. I don't believe in medicating for depression, because I feel that it is all in the mind. If you think positive, your life will be positive. There is always something that can make you happy, whether it's reading, exercising, cooking, or hanging with friends. My family is my rock. My dad, mom, sister, and everyone else. I'm very lucky in that they are always there if I need them, no matter what the problem. I have a phobia of bugs, but my biggest phobia is squishing bugs, or anyone squishing bugs for that matter. Harry Potter helps me get through tough times, as strange as that sounds. My hobbies include reading, singing, sleeping, eating, and swimming when possible!

I am currently a nursing major at Elmira College. In fact, I just became a senior today! I have gotten sick many times through school, the longest period being two months. My school has worked with me to help me keep up with the crazy amount of work. I have honestly never done something so difficult as college, but it's rewarding. I cannot wait to become a nurse so I can give back in the same way that I was given care. I plan on working with pediatrics, and I plan on working as long as I can. I do fear that I will become ill when I begin nursing, but to me, it is worth it. I want to work mostly with respiratory patients, but I am positive that is the worst idea for me, and I will be unable to do so. If nursing doesn't work out for me, I plan on being a phlebotomist. I don't want to be limited by my disease, but if I face reality, I know I will have to be if I want to stay healthy.

Sleep calls.