Day 1; Monday
I got admitted today. It started off with going through meds, a nose swab, getting vitals, and going down to get X-rays. I didn’t have to get pfts because I got them Friday. After this I got a iv, the person was great and I didn’t have to get poked twice. I did some treatments, started antibiotics and all was well.
Hah, just kidding I didn’t get any sleep!
Day 2; Tuesday
Okay so I actually got a picc today, yay!👏
My day started off right where I left it off, trying to sleep, I barley got any sleep and since I got my picc at 1 I was sleep deprived and didn’t have any energy due to not being able to eat. I was really dizzy and I got a headache that wasn’t going to go away.
I was happy to get my picc because I was worried my iv was going to blow soon and I just wanted to sleep. Oh I was not expecting this.
I had a reaction to the anesthesia and got really nauseas. I had been shivering from being cold, I got three blankets and took a nausea med. I had to get my blood sugar taken just to see if that’s what was causing it but it was in normal range (I do not have CFRD, aka cf related diabetes.) I had gotten nauseas last time but it wasn’t this bad. I got a fever and kept taking naps for the rest of the day. By night time I couldn’t do my feeds and I just tried focusing on getting good sleep.
Day 3; Wednesday
Today I feel better, well better than last night. I got pfts today. They’re better but that’s because I closed off the back of my throat, but let’s just say they’re better because I’m suddenly not sick. Anyways one of my friends visited too. We walked around the hospital and she brought us candy. Vanessa if your reading this, thanks!
Sorry if I haven’t been uploading the first few days here have been rough but I will try to upload.
So you read the title, I’m getting admitted again.
I’m not happy about it but it’s for the best
I’ve been feeling pretty crappy
I had clinic Friday. I’ve been on many antibiotics and a steroid and they haven’t helped. My doctor started talking about my trapped air and how there’s a underlying thing going on causing this cycle of breathing problems other than cf or a part of it we haven’t thought about
So she suggested a new inhaler. I was about done after she said that. I feel like crap and all I want to do is get better not go on more meds, when I heard her say “and if you feel that your ready to be admitted just tell me” I instantly said I feel ready to be admitted
I’m sick of being sick
Although I have to go in it helps and then I feel better for a couple months before I feel bad again
But at least I’ll feel better
I’ve honestly given up on oral antibiotics
As soon as I’m sick I just want to get a admission over with and feel better
Yes there’s a underlying thing causing all this to happen but at this point I just want to do what makes me feel better, not dig into the ditch more
I wish I could just be better
I have to get a bipap machine because I breathe to shallow at night which can cause fatigue
I did two sleep studies
When I was wearing the mask for the second one all I could think was “I’m not going to be able to do this at home”
It’s horrible honestly
Although I only get air in when I breathe in it still sucks
I know I ‘have to get used to it’ but how am I going to when I can’t sleep because it’s so uncomfortable
It’s not about the mask on my face
Because I can deal with a mask it’s jut the air part
Don’t take this for any advice I might just be blowing this out of proportion but that’s just how I’m currently thinking
I’m getting admitted sometime Monday and am going to be in around a week or so depending on how I feel and then do the rest at home since it’s nearing thanksgiving
Honestly I’m so stressed
It’s going to be my first time doing online school in the hospital, I don’t know how it’s going to work out
I know I won’t get a picc for a few days because they always schedule it for one day and have to reschedule it for another
Having people constantly go in and out along with having to do so much like 4 treatments a bunch of iv antibiotics, PT, pfts two times a week
Also I’m having so many problems with ivs like whenever I get one I have to get poked twice and they never last over two days
Anyways now I’m just ranting, I’m sure it’ll be fine
So this is a new movie coming out called five feet apart, it’s about two young adults who both have cystic fibrosis aka the thing I have. When I first hear about it it was through YouTube. I saw a fellow Cfer reacting to it. Of course I had to watch the trailer.
I feel like you can’t fully rate this unless you have Cf. It’s showing the reality of our lives and it’s a tough thing to watch sometimes. I’m going back and forth with my thoughts. I watched the trailer everything seems to be correct. Now there’s some medical shows that I’ve watched where it’s complete bs. Like the show red band society and grays anatomy. Bu this seems pretty accurate.
When I first watched it I felt like I didn’t like that they were making a cf movie. I knew that although it’s spreading awareness it sends a fault in our Stars vibe. I knew that Hollywood is just going to dramatize it a lot of people aren’t going to focus on cf but just the romance and drama. After hearing some other Cf’ers thoughts I feel better about it. It’s going to spread awareness and it gives people an idea of what we go through.
Let me just say the only thing I found infuriate was the title, it’s six not five feet but I guess it sound better😂
I wrote this on the day before Halloween, if you get confused with names I use look at the bottom of the post
It’s that time of the week again, but this time I’m doing LNT’s with RPOTW. You know I’m shortening them because it’s a pain to write it all out. It’s funny how I say random Post of the week but I probably only write one every couple of weeks or even months, but the name stuck. Anyways grab some food and your furry friend because this ones going to be a long one!
First Topic: Health
I do talk about health a lot so if you don’t want to read all of it just skip to the next topic.
About a month or so ago I got another lung infection. Same symptoms and everything. I had had a sinus infection and was on an antibiotic to treat it but it also happens to treat lung infections. During my sinus infection I developed a lung infection. I was on that for 3 weeks.
Next I went to my 3 month monthly clinic. My pfts were worse and the antibiotic didn’t help my symptoms. My doctor, who I’m just going to call L for the sake of writing, put me on a steroid for 5 days. It’s meant to help inflammation and trapped air which calculated by another pft calculated 33%. In my bronch I did 3 months ago there was inflammation too. It didn’t help. Honestly I wasn’t that surprised because steroids never help me. Anyways, my mom called my hospital to let L know about what’s going on. I was put on an antibiotic that I’ve never been on before and can be used as a prevention med. I took that for five days and now I take it 3 times a week. It didn’t help.
My mom called again. L wanted to see me (and my sister) and get pfts done again. My pfts were basically the same. L came in and talked to us and after a hour or so we were set. The plan is tomorrow (the 31st) I have to do a clean out which is where I have to take a bunch of laxatives to help me get regular. Whenever I have a lung infection it’s usually accompanied by constipation. Anyway I have to be hooked up to my gtube getting go lightly all day and also take 3 other laxatives which are in pill form. I’m going on two antibiotics that I’ve never tried before for a different approach. It treats a type of bacteria which doesn’t show up on cultures. I’m going to be taking two of one antibiotic a day and three of the other one, for ten days, I’ll also no longer be taking the 3 time a week antibiotic at this time. In that ten days I’ll take 80 pills of just antibiotics! I have clinic Friday and if I’m not better by then then I’ll be admitted, the same goes for my sister as well.
I do talk about my health a lot of my blog and sometimes I do repeat stuff so I’m sorry if you’ve already heard about this, but writing about it helps keep my mind from running since it’s now all in one place. Thanks for the support!
Topic #2: School/ Hobbys
So I’m homeschooled, when I say homeschool I mean I do online school. It’s where I have teachers that I can call, text, email and do school work online. There’s different paces so it shows where your at and my teachers usually email me every couple of days with weekly news letters and tips. It’s really helpful since it’s flexible around how I feel. If I had a bad night and I need to sleep in I can, I don’t have to wake up at 5 in the morning and I can do school work at my own pace. It’s also good for appointments so I don’t have to miss school.
It took a while to convince my parents, and I have to do social stuff so right now I’m taking a art class. The thing about this is I’ve been recently missing some because of appointments and my health but what can I do. I want the be involved with animals in my future career but just not a vet. I want to work with animals first to get a feel for it and make sure that’s what I want to do. I want to maybe take a jewelry class and do some more ice skating but not necessarily take a class for it. I don’t really like day camps and stuff but if I find one I like I can give it a try.
I want to pursue my blog more and start selling some of my artwork and jewelry, it’d be a cool thing to do. I want to start getting more involved in the cystic fibrosis community and help fundraise some more and help inspire others. I’ve been playing with the idea of making stuff for kids in the hospital, I know how hard it can be and I was lucky enough to not be in patient at such a young age. I want to make blankets and customize some stuffed animals. I customized one of my stuffed animals with a “picc” and a gtube. It’s my hospital buddy. My friend gave it to me as a gift when I was admitted for the first time almost two years ago.
I’ve recently been into sandbox, a app where it’s basically paint by color, my friends got me into it. I’m uploading some on my blog but I’ll be honest there more for filler posts. I’m not sure if you guys like seeing them or not, I’m trying to post everyday. I need to take time and work hard on some content other than spewing some stuff out. Let me know. I want to spread my horizon with some new art ideas, it can be anything to do with drawing, painting or even topics to write on my blog. If any of you have some ideas just comment them, I’m a fan of trying some new stuff too!
Topic #3: My Dog
I guess I’ll just start typing til I figure out what I’m going to be talking about so I can change the topic name. (It’s currently a question mark) #behind the post, oh how that sounds so cheesy.
Hmm I guess I’ll talk about my dog. Her names mya and we’ve had her for a year. She a chocolate lab and she’s crazy. She doesn’t bite (only on accident) and she’s the perfect size. She’s around 60 pounds but she’s short. She’s a little bit below my knees and I’m almost 5’4, not like I’m tall, I know I’m not! The thing is she’s a pain sometimes. Like I live in the “country” and the houses are spread out. Behind my house is a neighbor who I’m going to call I, now I has a dog named coco, she’s so fluffy and shy but she’s so cute. Mya always goes to play with her and we usually have to go get her. She’s ran to our friends house who lives across the street which doesn’t sound to far but it is where I live. Other than that we’ve had someone call us and someone return her, now those people are far away!
We recently bought her a collar to train her to stay inside our property, we obviously don’t have a fence but it’s at least 2, 2 1/2 acres of land.
She likes to bark at everything out our kitchen door (glass doors). She’ll let us know whenever there a squirrel or deer or even just the wind. She’s not a very “talkative” dog but she can when she wants to. We took her to a training class for a month or so and it didn’t help that much, we might take her to it again.
(BTP (behind the post) maybe I could do a picture compilation of her once a week..hmmm…ideas ideas)
Anyways here’s a picture of her, she’s usually not this calm or cuddly.
Topic #4: Horror Movies
WARNING, CONTAINS SPOILERS
Me, Annabelle and V have been watching horror movies since V loves them and I want to like them. So far I’ve watched
1. (Half) of the shining
2. A quiet place
3. The boy
4. The open house
5. The forest
So I’m going to reveal them in a non official way…
1. The shining
So far I don’t find it that interesting, it’s this guy that took a job as a caretaker for a retreat in the mountains. The last person that took care of it went crazy and killed his family. This guy goes crazy too and try’s to kill his family but they end up escaping with the help of one of the employees that works in the resort during the spring time with lots of things happening including there son being possessed by something, like I said before I don’t know the detail of how it ends. I know I said I only watched half of it but we stopped watching it because it was boring, but my friends told me the rest, (but not specific details).
2. A quiet place
10/10 would recommend, it’s the future and these aliens have taken over, their blind but they have super hearing. Millions have died and who knows how many are still alive. I’m not going to spoil this one because it’s new. John Krasinski or who I like to call Jim was not only one of the directors but also the main character.
3. The Boy
It’s about a doll. Not really. It seems possessed but like my fiend kept telling me you’ll see. It’s about two parents who lost a son from a house fire, to help them cope they got a doll that looked just like him. He would eat, learn, listen to music, and move. The couple puts him in the hands of a nanny and she doesn’t realize what’s she getting into. At first she didn’t follow any of the rules which include feeding it, reading it story’s, homeschooling it, talking to it, ect. Then weird stuff keeps happening. She eventually thinks she’s going crazy until her and the grocery delivery guy figure out it actually moves. Turns out the son was crazy and living in the attic the whole time, eating the food, turning on the music, moving the doll to make it seem like it was alive all while getting through the walls of the mansion. Enough said I was relieved by the end of the movie to find out that there were no ghosts or spirits involved.
#4. The open house
To sum it up and not spoil it to much a family who just lost a father and husband temporarily move to a relatives cottage while it’s in the selling process. Weird stuff keeps happening and it turns out there’s a serial killer who goes from one open house to another and killing them. I won’t ruin the ending too much, if you want to know, look it up.
#5 The forest
A twin sister goes into the suicide forest in Japan with a class of her students, she wanders off. When her sister finds out the news she goes and looks for her. Soon weird things start to happen and some stuff goes down. Watch it to find out because I’m not spoiling this since it wasn’t made too long ago.
Topic #5: Random
I’ve probably spent a hour or so writing this. It’s currently 11pm and my dogs going crazy. Oh ya me and my sister finally redid our room. It’s not relevant but this is called random for a reason.
McDonalds calls frequent buyers of their food “heavy users”
The average person spends 6 months of their lifetime waiting on a red light to turn green
There’s more public libraries than McDonald’s
The British royal family isn’t allowed to play monopoly
Most toilets flush in E flat
Approximately 40,000 Americans are injured by toilets each year.
Ketchup was sold in the 1830s as medicine.
“Almost” is the longest word in English with all the letters in alphabetical order.
“Sean Connery” wore a toupee in all his James Bond movies.
It actually takes 142.18 licks to reach the center of a Tootsie pop.
You’ll eat more than 35,000 cookies in your lifetime (probably).
Fredric Baur was the man who invented the iconic “Pringles” can. When he died, his ashes were buried in one
Ignore this if you aren’t confused on names
L is my doctor, l is the first letter of her name
I is for my neighbor who ps nick name is related to the name of my street because he takes care of the dirt roads
V is my best friend, v is her nickname
End of explanation
That’s all for now, bye!
Sometimes I hate my illness
I mean really hate it
I feel as though I’m always canceling plans
Not doing a lot
I don’t mind a lot of the time
But sometimes I do
I go back and think about how my life would’ve been different
If I didn’t have an illness
Would I have never met some of my friends
Never been really inspired to do something in the world
To make a difference
To start my blog or even art
Understanding stuff at such a young age
But also feeling as though I’m older than I actually am
If I didn’t have cf I probably wouldn’t be so understanding
But I will never feel normal
I love to travel but more than half of my luggage is medical supplies
I always have to carry pills on me… everywhere
Sometimes I’m grateful for my disease
Not the physical aspect but the mental stuff
Yes I deal with anxiety and depression
Yes I’m stressed a lot
But I’m also strong
Sometimes I don’t feel like it
But if I wasn’t so strong would I be where I am today?
Update/ Random Post of the Week
So I said early this week or last week that I was going to do a full update on everything. So here it is…
I have a sinus infection, I’ve been on antibiotics for two or so weeks and I have to do sinus rinses two times a day. It’s a pain and I’m struggling to do the sinus rinses everyday. Along with this, I have a lung infection. The symptoms started when I was put on a antibiotic for a sinus infection and since the sinus infection antibiotic also treats lung infections I’m staying on it and going to see my doctor this following Monday. My sister was put on the same antibiotic I’m on and is also seeing my dr Monday.
I’ve been kind of busy and stressed out a lot with health and some other things. I am doing online school because I’m sick a lot and I actually like it and now that I’m sick, it’s easier than going to public school. That helps with stress but I am stressed if I’m going to have to be admitted again since I’ve already been on this antibiotic for two and a half ish weeks, and whenever I get sick now I’ve been ending up in the hospital so I’m just stressed it’s going to happen again.
I want a port. My parents, well my moms eh about it but I honestly don’t know how my dad feels about it. It would help since whenever I get a iv it bursts the next day or two and I wouldn’t have to keep being put under for pics. My mom said we’ll see how we are after I get a bipap machine since when I sleep I breathe more shallow and that affects things.
Since me and my family host a golf outing each year to raise money for cystic fibrosis I was busy with that. It went good and we raised a lot of money. As some of you noticed I’m posting quotes of the days, those are not mine, I did not come up with them, there simply ones I find inspiring or relatable from Pinterest. I’m not sure if I should cite them but if you know please let me know. I’m also writing some poems. I know they’re bad but it helps me cope along with writing other stuff. Some of them don’t make since or could be taken the wrong way and I’m working on it but it’s more just for helping me than being good.
That’s all for now, bye!
Yesterday I was happy. A little girl that was innocent, with the whole world on her shoulders. A ray of sunshine. Not a care in the world. Full of energy and joy. She loved to play. Letting her imagination run free. Playing with friends and climbing on monkey bars and trees, doing cartwheels all over. Going to school and loving life. Jumping in chalked squares and jump ropes. Riding her bike and feeling free. Feeling the wind in her hair and the adrenaline in her veins. Not caring what others think or others opinions.
Today I am struggling. Not innocent anymore. Having my whole life stresses on my shoulders. No energy and not normal. Definitely not normal. The hospital is my second home. Depression, Anxiety, Stress. Panic attacks weekly. Reality slowly replacing the happy girl I once was. Seeping into all the cracks. Today I experience the reality of my disease. Creeping up to me when I least accept it. Having bad days more than good. Instead of loving being around people I like being alone. Finding comfort at night. The stars shinning just like I once was. Letting my thoughts run free, even though I feel trapped in them. Loneliness and guilt comes and goes. Writing my feeling out. Painting them away. Blocking them out in music. Feeling as though the only ones who truly understand are online.
Tomorrow I accomplish my dreams. Travel around the world. Sell my art. Spread awareness. Pursuing my dream job and loving life. Although I still have bad days I am more positive. Although I still struggle I have lots of support. I do crazy stuff. Go cliff diving, maybe skydiving or get a tattoo. Living my life to the fullest. Falling in love or filling my house with pets and art. Going to London, Italy, New Zealand, France. Learning about different cultures and art.
!Disclaimer this is going to be a long post!
So I’m writing about the last year and a half. I’ve been having a lot of health problems and a lot has happened so I’m going to write about it, yes I have wrote about hospital stays but when this domino effect happened I didn’t have my blog yet. Just a heads up I was diagnosed with Cf at 3 months and I’ve been pretty healthy lung wise (never had any problems until I was 12), just a lot of digestive problems which I still struggle with.
January 2017: When it all started
One night in late January I was having a hard time breathing and my inhaler wasn’t helping. Now if I felt this way now I wouldn’t have gone to the ER because when I’m sick its how I feel but back then I didn’t have much problems so it felt bad enough to go to the ER personally. When I got there I did some nebulizers and they didn’t help so I got an IV and was admitted overnight. The next day the doctors said I sounded good and my xrays were good and since I wasn’t having any problems I went home told that I had asthma. A lot of people with Cystic Fibrosis also have asthma so it wasn’t that surprising, also my mom and sister have it. After this I was getting a lot of sinus infections and often got sick with colds but since I have cf they last two weeks where someone without cf would only last a couple days. The colds would always end up leading to sinus infections.
In march I was admitted for the first time. I had a lung infection and this was the only time I wasn’t admitted without my twin sister. I was in the 27th- April 7th. I then did two weeks of IV antibiotics at home. After this I’ve never had an appetite. I was also coughing a lot and had chest pain too. My doctor thought it might be cf or acid reflex so I got a bronchial scope and a Esophageal Manometer. Before this I was put on a acid reflex med. The bronchial scope was actually good and the level of acid reflex I had was fine. My doctor decided it wasn’t cf related.
I started Physical Therapy for chest pain in May. Turns out there was a bigger space in between some of my ribs. I did PT over the time of a month, going once a week to a place near my hospital that’s an hour away. Around this time I got a CT scan for my sinuses since I was in a lot of pain. My right sinus cavity was filled and there was a bone erosion starting to grow around it. We scheduled sinus surgery. I got the surgery sometime in June.
The physical therapy helped my chest pain and when I was done I still was supposed to do some exercises at home. The problem is I was still coughing a lot. This was very hard on me because I hated coughing a lot especially in school. I started speech therapy for having VCD, Vocal Cord Dysfunction. It was a pain in the butt, but it helped. VCD can cause a lot of symptoms including coughing and breathing problems. Typically the cough is caused by a tickle in my throat.
I got admitted again in August. I was there from the 18th-28th. This time my twin sister was also admitted because of Cf. After I got discharged I did two weeks of IV antibiotics at home. Like I said before I never had a appetite anymore. We were talking about me getting a gtube. I was nearing 89 pounds. I got a gtube November 3rd. Since I was having a lot of breathing problems my doctor was trying to figure out why since we always sounded good and our pfs weren’t that low. Both me and Annabelle started PT November 17 and it went through December 19. My doctor and the physical therapist thought it might be because of posture (honestly I though it was stupid) and then after we still did specific exercises at home. It didn’t help.
In December me and my sister both got admitted the day after Christmas. We stayed in til January 2nd. It was an interesting experience since we were in over New Years. It was actually pretty cool. We could see some fireworks from my window and we watched the ball drop on TV. Then our nurse came in and asked if we wanted glow sticks. It was an interesting experience.
From there on out we were getting admitted every 3 months. I kept having an allergic reaction to what we thought was the antibiotics I was on. The first time I just got itchy bumps near my picc site the second time I got hives all over. I remember it was picture day and I had to use makeup to cover up to rashes on my face. I did this whenever I went to school because I didn’t want people to ask me why. People still asked. I got allergy testing which hurts because I had to get shots to see if I was allergic to stuff. The shots create a bubble of your skin and it burns. It turns out I was allergic to the cleaning stuff the whole time.
On March 13th through the 23rd I was admitted again. Every time I get admitted I have to get put under to get a picc. I tried to do it bedside once and It hurt and I was really anxious and tense so they couldn’t get the picc through. Again I was only admitted for a little over a week and I had to do two weeks of IV antibiotics when I got home.
The next time I got admitted we decided to stay two weeks in the hospital instead of doing one week there and two weeks of antibiotics at home. We did this to see if it changed the amount of time in between hospital stays. I was admitted along with my sister on June 5-18. On July 4th we left for Paris for two weeks. We were doing therapy two times a day and walking 7 plus miles a day. We got admitted when we got back. I was really frustrated because we were doing so much and I thought we wouldn’t get admitted so soon. On August 9-20 we were admitted. We were only going to be in for a week and do two weeks at home since it didn’t do anything but my doctor wanted us to get another bronc and a ct scan of our lungs, also Annabelle was getting a gtube. They didn’t find much except I had some inflammation. But whenever we were admitted before we went on a oral antibiotic and a steroid.
Through this whole thing I’ve gained around 15-20 pounds. I’ve also been dealing with a lot of anxiety and depression so I’ve been going to see a therapist and I’m currently on a antidepressant and a as needed anxiety med. Before I went on the as needed anxiety med I was having a anxiety attack every night. I also would have some during the day. I have social anxiety along with generalized so I have some in crowded places too.
I also still struggle with constipation a lot, I know TMI but its just a part of having Cf.
So that’s the story of the past year and a half.
That’s all for now, Bye!