Yesterday, Today, Tomorrow

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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.

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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.

My 65 Roses Story (Cystic Fibrosis)

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!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!

-A&R

The A&R Journals: Hospital Diary’s #9-10

Day #9

(Wood pallet things)

Today I woke up at 8 and did therapy around 9. Then I got my meds and me and my sister went on a long walk after rounds. We were going out on a leave on pass today when my mom came to the hospital. We ordered lunch and watched Deadpool 2. I painted and we went on another walk. I like going on walks in the hospital because it’s like a little bit of freedom. It sucks being stuck in the same room for a week and since we’re not really supposed to walk around on the floor (even though we do sometimes)we go downstairs. We know our way around the hospital, this hospital stay we found some stuff. By the cardio vascular center there’s a java Juice or whatever it’s called and in the cardio vascular center there’s a Starbucks and a cool waterfall thing. We also found out about a outdoor garden thing.

When we went out we went to Joan’s, target, and Barnes and noble. At Joan’s Annabelle got some fabric to make a tie blanket like mine and I got some wood pallet things to paint on. At target I got some face wipes and lotion. And I obviously got books from Barnes and noble. When we got back we ordered pizza and rented a movie called ready player one. It’s a really good movie. I also had to change my gtube button, I changed it about a month or so ago and you can change it every one to three months but I changed it so soon since whenever I opened it stomach juices came out and that means that there was a hole in the ballon that keeps my button in place. Also when I took the water out of the ballon when changing it it only had 3ml of water and we put 4 in so that means it was leaking too.

I’ve been having some problems flushing my picc, my nurse couldn’t flush it and when she did it’s really hard. I started getting heparin locked instead of saline so hopefully it gets better in the next few days.

Day #10

Yay only four more days!

So I set a alarm for 7 and 7:30am last night so I could wake up earlier to take a shower, also because I like waking up early because not a lot of people besides my nurse comes in earlier. I ended up actually getting up at 9. Respiratory was 1 1/2 hours late so my whole treatment schedule is off. I’m getting pfts, and a ct scan of my lungs tomorrow. Also it’s back to doing pt. Today my grandma and cousin visited, my cousin got me and my sister a lot of smarties and a pack of big Reese’s. My best friend Vanessa visited for a while and we went on a walk like we always do. I took a shower and got my dressing changed. In about a hour we’re going out of a leave on pass again and going to a dog park with my mom and dad, my dad brought mya (my dog) from home so we can see her. We’re probably going to go to jimmy johns too.

That’s all for now, bye!

Late Night Thoughts: Health, School, and New Ideas!

(Cute cats from a cat cafe I went to during my last admission)

So I can’t sleep… shocker I know! I don’t get good sleep and I have a lot of problems falling asleep. I did get a sleep study done and I have some breathing issue but I’m getting it sorted out. Anyways since I’m sick my sleep is like 10x worse. Sometimes I’ll be up anywhere from 2 til 5am, yes 5 freaking am, as in the morning! And then I’ll sleep til 1pm. I can’t sleep because of my breathing issues and just the overall uncomfortableness in my lungs, I’m guessing from all the mucus.

Anyways as you can tell I can’t sleep. And the reason this time being breathing problems. I am taking my inhaler even though it never helps but mine as well try it… again. I’m taking 4 puffs instead of 2 so maybe it will help, probably not. I hate taking 4 puffs though because it makes my hands shaky and I can’t sit still. I’ve been on a antibiotic for my lung infection for over a week and have also been put on a steroid. My last admission was in the beginning of June so it’s only been a month or so since this happened last. I went to clinic last week and my pfts were ok, my doctor said they weren’t where she wanted them but it’s not like I needed to be admitted right then and there.

Anyways I am aware that this post I all over the place but that’s kind of the point of my late night thoughts writings is just small updates about my health and art and other random stuff. I’m being homeschooled this year. Me and my sister have wanted to be homeschooled since 7th grade which is the time our health started to go downhill. It’s too much for us to miss so much school and have to make up so much work and it just adds to anxiety. I’m actually pretty excited because I can do more art stuff and maybe even grow me and my sisters YouTube channel and start posting stuff regularly and I also want to start uploading to my blog more. For my electives, and yes there is electives for online school, I want to do some art and take a veterinarian science class. When I’m older I want to do something with animals or art as my career but I still have some time to decide but even if I chose one I would still do the other one. When I’m old enough I want to volunteer at pet shelters and foster animals.

So as I’m typing this it’s Sunday night, we’ll really Monday morning, “I’m” (aka my mom) is going to call my hospital “today” or Tuesday. I’ll of course give updates and if I get admitted I’m going to try to do art posts still but I will still do hospital diaries. But I might change it up a bit so I will continue to record my health even after I’m discharged since I think I’m going to go back to staying in the hospital a week and doing two weeks of antibiotics at home. I would talk about my day, my antibiotic schedule, getting blood draws and just overall my life of when I’m sick. Maybe I can call it the Brianna Diaries? Bri Diaries? The Salty Life Journeys/ journal/ diaries? Something with A&R in it? I don’t know give me some suggestions in the comments.

That’s all for now bye…

-A&R (art and roses)🌹

Late Night Thoughts

So I’m sick yet again, just having my normal lung infection symptoms you know it’s all good! My mind is racing with all the possible things that can happen in the next month, and all the emotions that will come back to me. Loneliness, anxious, beyond stressed, depressed, hopelessness. I’m trying to wrap my head around this and telling myself I won’t end up in the hospital but since the first time I start coughing again I give up. The last 5 times I’ve been hospitalized so why won’t I be this time. The oral antibiotics never help so why would they this time. I’m sorry if all this sounds depressing but it’s my life. It’s like a Ferris wheel, constantly moving up and down and stopping a little at different heights so people can get off, but not me, I’m stuck in this constant cycle. Since cf is a progressive disease it will only get worse but got to stay positive you know? I can get better for a little time but then it happens all over again, like I said before it’s this cycle.

When Im sick I feel alone, even though there’s lots of support around me. But no one truly understands. You know there used to be clubs for people with cf and camps but kids were just getting sicker so they figured out were contagious to each other. It used to be 4 or 5 feet that we had to stand apart but now it’s 6, and probably is going to just keep increasing. That’s why I have to wear a mask in the hospital. And they try to get you in a room as soon as possible since they don’t like two cf patients in the same waiting room. Now I don’t know if this is just me but whenever I see another cf patient I feel some sort of pride, or understanding.

When I’m sick I get beyond stressed, stressed about taking pills and hospitals, ivs and picc lines, doctors visits and hospital admissions. When your in the hospital it’s hard to be there doing nothing when everything is moving outside those four walls.

Let me just say that I just realized how much I use my blog for coping. These late night thoughts and other cf posts I tend to write when I’m not in the best mood or if I’m stressed and want to get my thoughts straight. Sorry if this is depressing but these are just my thoughts sometimes and it comes along with having a chronic illness. Anyways I hope you enjoy this snippet into my life and bye!