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😂
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?
I want to give up
I’m sick of fighting
I’m going to break
I’m silently hiding
Under the smile
I’m not as strong as you think
I’m falling apart
My life is crumbling
It feels like my fault
The guilt haunts me
I wish this wasn’t me
I’m trapped in the walls
The walls of my disease
I’m silently waiting
For some hope to shine through
I feel like I’m suffocating
I will push through
If that’s what I have to do
I hide my emotions
I’m falling apart
I don’t want to fight
But there is no choice
I made it this far…
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!
So I would just like to make this post. I watched this YouTube her name was Claire Wineland. She had cf. Let me just say her life was hell. She almost died a couple times when she was 14 and she was on oxygen 24/7. Somehow she kept a positive attitude and a bright smile. I never knew her personally but she helped me through tough times and hospital stays. I loved watching her speeches and rant videos.
She raised a lot of money for the cystic fibrosis foundation. She inspired me to do the same. And she inspired hundreds of others.
She decided to get put on the waiting list for a lung transplant, obviously it’s tough to come by. She waited a while and got the call. I’m not sure when since I don’t have social media besides this blog but she got a transplant. She got it and had a massive stroke due to a blood clot. The doctors tried to stop it but it was her time to go. She passed away a week after. She was 21. May she Rest In Peace❤️