I used prismacolor colored pencils.
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,
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,
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,
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,
So today my mom called our hospital to tell them the antibiotics aren’t helping and such. It took til 4 for them to call us back.
Our doctor wants to admit us. Preferably for the two week stay. I have to get a broncile scope done and a ct. I’ve had a broncile scope done before. A ct or cat scan is a more in depth picture unlike an X-ray which doesn’t show as much. My doctor wants to know why I keep getting sick and my X-rays don’t show anything so that’s the next best thing. She mentioned maybe doing one when we were at clinic, but said it exposes me to a lot more radiation.
I will be in the hospital when I get my gtube which is a good thing. I don’t have to get discharged and then a few days later have to come back. I a,so had a neurologist appointment the 21st but I’m not sure what we’re going to do about that since we can’t go to outpatient appointments.
That’s all for now,
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,
We’ve all heard about bucket lists. Most of us have probably written one in the past, but have long forgot about it. I have written multiple,but alas, have no idea where they are. I even have a pinterest board filled with ideas.
I’ve only been out of the country once and plan to leave again in the future. I am planning on going to Australia for my make a wish, if they accept it of course. I also want to travel to London.
If you are wondering about some awesome places to go or add to your bucket list, pinterest is your best friend.
Starting off in new zelands south islands, hokitika national park. Its very pretty and you can walk across bridges and the water. Its a great place for taking pictures.
Again, in new zeland, the glowworm caves.
There are multiple things I would love to do in new zeland, but moving on to London. The cafe of umbrellas, pretty self explanatory. A cafe. FULL OF UMBRELLAS.
Now on the not so travel side, that probably costs less money and is more reasonable. I would love to go in a hot air balloon. Ever since my sister and I were younger we’ve always wanted to go up in an air balloon.
Letting go of a floating latern, watching a sun set for a roof, and spending a night in a treehouse are also on my list.
I’m sure many of you have heard of the sky deck in Chicago. My friend went up there and it took a long line and more than enough waiting. The sky deck is located in the sears/Willis tower, which has an area of glass flooring that you can stand on. Pretty good for pictures if you ask me.
Los Angeles has a similar thing. A glass slide called skyspace, located 1000 feet above los angeles, california.
I would also love to see the northern lights. The only problem is its during a specific time and even then its a big if.
Now this isnt all I want to do, I want to float in the dead sea, go zip lining some more, have a vacation with friends, and other stuff, but I can’t remember half of it so this is what I have so far.
That’s all for now,
So I’m driving home from the hospital. Just in time for rush hour yay. The doctors did pfts and they were better. The doctors decide to discharge me. They put me on a different antibiotic as well as keeping me on prednisone. He was worried about admitting me since antibitoics are hard on your kidneys. He said if I end up coming back to the er then well deal with it. He said its better to rest in your own bed then keeping you here. So it might not be a suprise if I end up back in the er.
I got iv out and all that jazz. I got like 3 hours of sleep, so yay.
That’s all for now,