Hospital Diaries #7-8

Day 7

This is my schedule usually.

6am:Thyroid medicine

8am: first therapy

10ish:rounds

12pm:second therapy

1:30pm: physical therapy

4pm:third therapy

8pm:fourth therapy

I have a ct scan Monday at noon. I also have my gtube and bronc at 7:30am on Tuesday, so that will be fun.

At physical therapy we went outside and did a few different exercises.

Brianna and I were alone all day, which was actually nice since it was just us. We watched tlc which had on four weddings and say yes to the dress. My aunt and uncle visited, which was nice.

Someone came in from music therapy and we played ukulele. It was sort of good to have something different to do.

We went on a long walk for around 45 minutes at 11. We took a couple laps around the lobby and went to a lobby.

Day 8

Today my sister had a bronc. They said it would be at 12, but then it was moved to 2m30. They put her on call so it could possibly be moved up sooner and she ended up going down at 1:30, but didn’t go back til 2:30.

Right now I’m updating my computer which takes awhile. I have treatments at 4.

My mom went and talked to another mom with a daughter who was going to get a gtube.

When Bri gets back I want to play jenga with her. I want to go to Michaels this weekend to get some fabric to make a tie blanket. Brianna made it one time we were admitted. It’s nice because it’s so thick and you can choose which fabric you want. For Brianna’s they’re both kind of fleece and one side is really soft.

I got pfts done. They’re a bit better which is good. One is 82 the other is 101.

It was really foggy today.

That’s all for now,

Bye.

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Hospital Diaries #4

Today nothing really happened. I played the sims, we binged watched say yes to the dress since it was playing constantly on tlc. We walked around a bit and plan to later, went to a gift shop and of some candy. We cut the walk short since I was having an episode of breathing problems.

I took a shower today. My hair was sort of oily so it was a good thing to do. I drew a bit today. I’ll upload the picture soon. I lost 2 pounds. It’s probably from the clean out which I guess is a good thing since the weight wasn’t benefiting anything.

We’re still planning to do a bronc on Tuesday or Wednesday. I think I’m still getting a gtube at the same time which I’m nervous for. When I got a picc it was at 8 and it was weird because everything happened so fast which I didn’t like that much. Usually it takes at least a half hour before the anasteseologist. I was the first one that day so that’s why it went by so fats. I prefer to wait actually so I can process it. When I got the picc it was happening so fat so I didn’t have time to think about what was going on.

I filled out a hope bead sheet and got them. I’ve done them once before and try to do it every time which I usually forget. Now my necklace looks more full instead of just like 20 beads it’s around 40ish.

That’s all for now,

Bye.

Hospital Diaries #3

I got the picc today. I woke up, they came in around 8 and I had to roll down my iv because I was on fluids. When I got downtown there I didn’t wait to long for everything to happen. They asked me questions, I changed into a gown, got my vitals taken and then someone gave me some relaxation stuff before rolling me back to the or. For most of the day I was groggy.

I talked to phycology about my increased anxiety. I went and walked around a bit for pt.

I officially have no ivs. Yay. Hopefully I get better sleep tonight since I won’t be hooked up to fluids and don’t have an iv. Last night I got like 2 hours of sleep. I also had to get my blood drawn at 10:30 and later at night for tony levels. The person who drew it was really good, which is always good. I’m glad it’s The Weeknd so I get to chill.

The doctor came in and said we would be gets bronchioles scopes either Tuesday or Wednesday and that I would most likely be able to get my gtube at the same time. I’m really nervous to get it and know I’ll be freaking out which is always great.

That’s all for now,

Bye.

Hospital Diaries #2

So I did not get a picc today. I woke up did therapy, and my sister had already changed into a gown when we were told that we wouldn’t be getting them today. So rounds. My X-rays showed for my stomach that I am indeed, backed up. If you don’t know what that means, it has to do with bowel stuff. So I’m taking mirialx every hour. They said when we came in, in the morning they heard crackling in my lungs, but after I did therapy it was clear.

I’m so full from all the mirialx that I didn’t eat a lot today. So from the Toby it messes with your kidneys so you have to drink ALOT of water. 3 liters to be exact. So we decided, especially because I’m already drinking so much mirialx, that I was going to be on fluids. So I’ve been on fluids all day which is weird. I ended up having to get a new iv because the one I had wasn’t working. I was going to go down to the gym at 3 but then a physiatrist came in so she said we’ll do it tomorrow, but I won’t be doing it tomorrow since I’m getting a picc at 8am and my arm will be sore. I have one more therapy for tonight and then I’ll be set.

We’re trying this sleeping protocol thing which is where we close the curtains and stuff and can’t go on our devices. I’ve tried it before, the not going on my devices and it doesn’t do anything, but I still have to try it.

I’m sort of nervous for getting a picc, but I know I’ll be more nervous tomorrow. I don’t know why I get nervous even though I’ve done this many times before but I still do.

That’s all for now,

Bye.

Hospital Diaries #1

So today I got admitted. I got the call the room was ready at around 3. Once I got to the hospital they asked questions, I unpacked, all that Jazz. I’m in a respiratory isolation room, which looks a lot different than other rooms. After waiting a bit and picking what to,e I’m going to start my therapy, which is at 8, I got an iv. Luckily they got it on the first try, so I only got poked once. At 6 I went down for a lung and stomach X-ray. This may be tmi but it’s apart of the cf life. Since I’ve been having irregular bowel movements they wanted to take an X-ray of my stomach to have some information as to what’s going on. I was down there for around a half hour.

I just got hooked up to Toby which is an antibiotic and also got my blood drawn. My mom ordered some pizza and breadsticks from this awesome place called pizza house. I’m sure I’ve talked about this place before. We usually get it the first day of being in the hospital.

At midnight I’ll be npo which means I can’t eat or drink anything after midnight. I’ll hopefully be getting a picc tomorrow. They don’t know what time, but will know tomorrow. I’m really hoping we’re getting it tomorrow.

Sorry this is short it’s hard to type with one hand.

Anyways that’s all for now,

Bye.

Crap Lungs and Sleepless Nights

Another sleepless night to add to the book. Well technically it’s not a sleepless night it’s just a bit to late for my liking, then again when am I not up this late. So I’m laying in my bed, wishing my stupid internet would work. I’m currently using my sisters phone as a hotspot. It’s a good short term solution, but it drains everything out of your phone.

My sleep issues have not died down and won’t be anytime soon. My next sleep study is for November 1st, and that’s the soonest we could get. I can’t decide whether the lack of sleep is from my actual sleep problems, or my crap lungs.

Now taking into account, my lungs aren’t that bad all things considered. Ya there not your typical “I can walk up stairs fine” lungs, but they could be worse. Now for me, ya it’s not very good. I have a lung infection, probably going to be admitted soon, but I have to accept that and wait. At least I got to go to Paris before yet another lung infection decided to invade my body. Now my pfts weren’t awful last time, actually a little better than the previous ones, but pfts are weird like that. Not accurate all the time, depends on effort and technique. One of my numbers were 86, which is pretty good, but can be pretty annoyingly inaccurate if you ask me. When you can barley readjust your blanket without getting out of breath, the fact that there that high proves to call them inaccurate. Plus I’ve never been great at pfts and vocal cord disfunction doesn’t add any benefits.

My episodes of breathing problems leave me unable to talk for long or short periods of time, not being able to do much, and just wanting to sleep. They drain a lot out of you, and with the already sick state I’m in, causes even more fatigue. When I was admitted through the er the doctor told me that when an episode happens to just relax. So I do breathing exercises, try to sleep sometimes, and watch something. I usually don’t do much when I’m sick, but this lowers my ability to and my motivation is already lacking.

Don’t get me started with motivation. I usually end up writing blog posts when I can’t sleep. I’ve been trying to draw more, both for me and my blog. It helps me relax and especially listening to music can calm me down. I’m trying to concentrate on colored pencil right now and to get better at that. I can’t draw for long, around an hour at most, without getting exhausted, but it’s good to be able to have a project to work on fir the next day.

I try to do the most I can in a day, even though I regret it a lot. Our pool is finally set up so I’ve been swimming in it with my sister and parents. Today my dad put mya, my dog, in it. It’s an above ground pool, unlike my cousins which we usually go to, so we had to physically lift her in and out of the pool. She still loved it though. My dads going to build her some steps so she can get up without difficulty. When we first introduce mya to a pool she didn’t go in for a while. We would lift her up and show he where the steps were in my cousins pool, u til one day she just jumped in. Now whenever she goes in she never want to get out, which is really cute. She looks like an otter when she swims.

Anyways I’m going to attempt to sleep, that’s all for now,

Bye.

Health Update

My mom called the hospital today since the antibiotic isnt helping. They were debating on admitting us or putting us on antibitoics. Theyre not admitting us and instead are putting me on steroids and I have to do therapy 4 times a day, along with taking albuterol every 4 hours. I dont know how long were goong to do this for, probably wait a week or so to see if its helping or not. Its probably prednisone so ill be on it for 5 days and just wait til I’m done with the prescription. My gtube is on the 23rd so if I end up getting admitted in a week, since prednisone never helps, ill be in the hospital before I get my gtube.

My illnesses

So I don’t have a lot of illness, but there sure are a few. I have cystic fibrosis, asthma, anxiety, depression, and hypothyroidism. So I’m just going to go a little more in depth with theses.

Starting wit something I talk about a lot on this blog is cystic fibrosis. Cystic fibrosis is a genetic disease that is progressive,terminal, and chronic. Yes all the fancy words. CF causes an overload of mucus in different parts of your body, but is a lung disease. This is caused by a genetic defect that messes up the chloride channels in your body which causes it to not work properly. Therefore the secretions or mucus in the body builds up and is thicker than normal. It mainly affects the digestive system and the lungs. It leads to many hospitalizations and doctors appointments.

Onto the nest thing, asthma. A lot of times cf patients have asthma. It is an inflammation of the bronchioles which causes mucus to possibly build up due to the narrow airways. For me I was already taking albuterol most of my life and was diagnosed after I got asthmatic bronchitis, which was around 3 years or so ago.

Anxiety. A lot of people have general knowledge of what anxiety is. Anxiety is worry, fear, and anxiety that interferes with ones daily life. Symptoms can be excessive stress, worry, and restlessness. For me I get anxiety attacks, social anxiety which is anxiety caused by social interactions causing irrational anxiety, and generalized anxiety. I get anxious in large crowds and near a lot of people, which often leads to anxiety attacks.

Depression. Similar to the last one a lot of people have common knowledge about it. It is a consistent feeling of sadness and disinterest. For awhile I was down and distanced myself, which still happens, but I deal with it. It causes me to shut down and distance myself, stress, mood swings, and other things that I choose not to mention. It sucks basically and stuff.

So last things last, hypothyroidism. It’s where the thyroid gland doesn’t enough thyroid hormone. In my case, it’s genetic, my mom has it. It can cause fatigue,and mood swings. When I was diagnosed I had to get my blood drawn a lot to get my levels checked and for the medication to be tested. All it causes me is to have to take a small pill when I wake up and I can’t eat for a half hour after i take it. The hardest part was the beginning and the very so often check ups and blood draws, but it doesn’t really affect me. Talking about appointments I have my next one next Tuesday and the same week I have clinic Friday.

That’s all for now,

Bye.

Chronic Illness Fun! A very Sarcastic Post.

If you have a chronic illness, you know that I am being 100% sarcastic when I say how fun it is to have to deal with it. Don’t you just love how adventurous it is, to go through the journey of an illness that just doesn’t go away! Cause I know I do. If you don’t know I have anxiety, depression, and cystic fibrosis. I have a couple other illnesses such as asthma and hypothyroidism, but those don’t affect me, at least as much. So I get to know what it’s like to have all types of illnesses. I got to catch them all.

My cystic fibrosis has caused me to, yet again, get another lung infection. I’m assuming it is a lung infection since I have all of my symptoms of one. Oh and don’t you just love nausea. The feeling of having to puke, especially when it decides to somehow always show up after eating, but also being nauseas all the time.

And the combination of not being able to breathe and the brain fog. If you have a chronic illness you know what I mean by brain fog. The joy of forgetting everything and the weird fatigue is just rejuvenating for the body. It’s a great cleanse!

(By this point please note when I am being sarcastic.)

Oh and to mix it up, just throw in some anxiety and depression into the salad of fun. The anxiety attacks and social anxiety does wonders for the dressing. And to top it off add some nice guilt and sadness.

But don’t forget the positive thoughts.

Why people with a chronic illness cant just push throuhg

I read this article on a website called the mighty called why people with a chronic illness cant simply push through. They wrote a great analogy about what its like to push through with a chronic illness.

It says “Its about like driving your car until it hits empty. I usually stop for gas when I hit the three quarter mark, just to be safe. I could wait until it lands on E, although that is risky.But even once your car is on empty, you usually have a certain amount of gas left. You can risk it and keep driving, but eventually your car will completely stop. When there is no more gas left, your car is not going anywhere no matter how many positive thoughts you have. For people with chronic illness, we tend to live our lives in the space between empty and completely out of gas. Some people learn their limits well enough to stop before they completely run dry, some of us will try to push through until we have literally nothing less.”

It is a great way to explain a limit for people with chronic illnesses. The more you push yourself the less you can do, and once you reach your limit it can take awhile for you to get back to where you originally started.

This can also be compared to the spoon theory where once you use all your spoons you start using them from the next day which lessons the amount you have. Especially on hard days, or when your sick, your energy can wear out faster. Like having an old car or a car that uses up more gas per mile. Your going to hit empty a lot faster than a different car and are going to have to take more time to fill it back up and do it more frequently.

Thats all for now,

Bye.