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!
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❤️
So I woke up today around 9 because I was really tired and didn’t feel like waking up earlier. Then I did my morning treatments and took meds. I went over to annabelles room and we watched some arrested development and we got food before hand from the subway downstairs. I went over to my room and did therapy. Then jot hooked up to my antibiotic and painted. At first I painted on my arm because I didn’t have anything to paint and I wanted to but then I found this banner thing and painted it. I then FaceTimed my friend for a while and now I’m doing therapy again while I talk to her and she practices the piano and I write this. My last antibiotic is at 6 and it takes a hour. After therapy I’ll probably go on a walk or go over to Annabelles room, watch some Netflix, get my antibiotic, pack, and get my picc out.
That’s all for now, bye!