(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)🌹
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!
Today I’m going home. The reason why this post is being uploaded so early is because my plane leaves at 10:35am and I needed to upload it before and when I’m still connected to the internet. Anyways I’m going to miss Paris but I think two weeks was a little too long. I’m starting to feel sick again so that’s why I say that. Anyways I was going to upload a airport journal but I decided not to because my flights so early. We go from Paris to Ohio which is a 8 1/2 Hour plane ride and then another hour from Ohio to Michigan. We land around 5 and the airports a hour away from where we live so we would probably get home around 7 our time but since I would still be in Paris time it would be 1am for us. I don’t like jetlag but it’s easier going back than forward.
I’m not really sure what I have planned for this weeks post since I’m going to just be relaxing and hanging out with friends. I’m not sure if I’m going to keep up doing two posts a day since that was kind of just for Paris since I was doing a travel post and then a art one. Anyways if you guys have any ideas or things you want me to draw or write about just put it in the comments! Thanks for bearing with me these last two weeks and thanks to the people who have recently followed/joined me here on my blog!
The other day we went to the Pompado Museum. It was a museum I actually liked and it’s was really cool. The way we got up to the different levels were cool, it was a glass tunnel thing with escalators…
Eiffle Tower by Robert Delaunay was one of my favorite paintings there…
And here’s me and my sister fooling around
1. When the flight crew calls people to start boarding the plane they’ll say that people who have infants or more luggage board the plane, board the plane. Often people with chronic illnesses have a lot of luggage with medical equipment in it so it would be easy to get on early.
2. Wear a mask, this can help keep away unwanted germs and sicknesses.
3. When getting bags checked ask them to put a fragile sticker on it so your medical equipment doesn’t get broken
4. When packing your pill container put it in a ziplock bag so if it opens it doesn’t get all over your bag and it easy to put back in
5. Have a airport staff help you through security if it’s busy or if you have to pack a lot of medical equipment that can’t get checked
6. Always pack extra stuff, you never know when you’ll need an extra gause or even a feeding tube button
7. Call the airline beforehand
Day in the Life Traveling with a Chronic Illness
(Here is the beautiful view from me and Annabelles room in Paris)
First I wake up to my feeding tube machine going off, then I either go back to sleep or get up depending what time it is. After that I do therapy. Me and Annabelle are switching between doing the arubika and the vest in the morning. The arubika is something that does the same job as the vest but you blow in it and you don’t have to plug it in. So we would each do our nebulizers, then I would do the vest while Annabelle does the arubika or the other way around. Then I would go take my meds and get ready for the day.
After that we go and do whatever we have planned for the day. When we get back to the apartment me and Annabelle do therapy again and depending on what time it is I’ll take my night meds. Then I’ll hook up my tube feeds. I had to make a makeshift way to set up my feeding bag and pump.