So a lots been going on the last day or so. Yesterday I had thrown up around 6 times. Dry heaving, that fun stuff. I basil you slept all day yesterday. My heart rate was steady around 125 and my temperature is 100.9.
I’m still losing weight and so I feel weak. I did do tube feeds, but used a boost breeze instead of my peptamen. I threw up this morning and continued to dry heave afterward. I got an ultrasound and nothing showed up. I also got tested for celiac and ibs, both negative.
My blood sugar got tested and was normal also. There testing me for c dif and May do a gastric emptying test, which I’m hoping they do. It tests for Gastroparesis.
I’ve been hooked up to I’ve fluids since I haven’t been taking anything in.
I’m planning on doing a marvel movie marathon. Yay.
I don’t really have anything else to say. Thanks for all the support.
That’s all for now,
So many posts… the time I’m uploading it’s more than 500 ports, but you get the idea. I can’t believe I’ve uploaded 500+ posts, I wonder how long I’ve spent on this blog..? 😂
So I did not get a picc today. I woke up did therapy, and my sister had already changed into a gown when we were told that we wouldn’t be getting them today. So rounds. My X-rays showed for my stomach that I am indeed, backed up. If you don’t know what that means, it has to do with bowel stuff. So I’m taking mirialx every hour. They said when we came in, in the morning they heard crackling in my lungs, but after I did therapy it was clear.
I’m so full from all the mirialx that I didn’t eat a lot today. So from the Toby it messes with your kidneys so you have to drink ALOT of water. 3 liters to be exact. So we decided, especially because I’m already drinking so much mirialx, that I was going to be on fluids. So I’ve been on fluids all day which is weird. I ended up having to get a new iv because the one I had wasn’t working. I was going to go down to the gym at 3 but then a physiatrist came in so she said we’ll do it tomorrow, but I won’t be doing it tomorrow since I’m getting a picc at 8am and my arm will be sore. I have one more therapy for tonight and then I’ll be set.
We’re trying this sleeping protocol thing which is where we close the curtains and stuff and can’t go on our devices. I’ve tried it before, the not going on my devices and it doesn’t do anything, but I still have to try it.
I’m sort of nervous for getting a picc, but I know I’ll be more nervous tomorrow. I don’t know why I get nervous even though I’ve done this many times before but I still do.
That’s all for now,
Another sleepless night to add to the book. Well technically it’s not a sleepless night it’s just a bit to late for my liking, then again when am I not up this late. So I’m laying in my bed, wishing my stupid internet would work. I’m currently using my sisters phone as a hotspot. It’s a good short term solution, but it drains everything out of your phone.
My sleep issues have not died down and won’t be anytime soon. My next sleep study is for November 1st, and that’s the soonest we could get. I can’t decide whether the lack of sleep is from my actual sleep problems, or my crap lungs.
Now taking into account, my lungs aren’t that bad all things considered. Ya there not your typical “I can walk up stairs fine” lungs, but they could be worse. Now for me, ya it’s not very good. I have a lung infection, probably going to be admitted soon, but I have to accept that and wait. At least I got to go to Paris before yet another lung infection decided to invade my body. Now my pfts weren’t awful last time, actually a little better than the previous ones, but pfts are weird like that. Not accurate all the time, depends on effort and technique. One of my numbers were 86, which is pretty good, but can be pretty annoyingly inaccurate if you ask me. When you can barley readjust your blanket without getting out of breath, the fact that there that high proves to call them inaccurate. Plus I’ve never been great at pfts and vocal cord disfunction doesn’t add any benefits.
My episodes of breathing problems leave me unable to talk for long or short periods of time, not being able to do much, and just wanting to sleep. They drain a lot out of you, and with the already sick state I’m in, causes even more fatigue. When I was admitted through the er the doctor told me that when an episode happens to just relax. So I do breathing exercises, try to sleep sometimes, and watch something. I usually don’t do much when I’m sick, but this lowers my ability to and my motivation is already lacking.
Don’t get me started with motivation. I usually end up writing blog posts when I can’t sleep. I’ve been trying to draw more, both for me and my blog. It helps me relax and especially listening to music can calm me down. I’m trying to concentrate on colored pencil right now and to get better at that. I can’t draw for long, around an hour at most, without getting exhausted, but it’s good to be able to have a project to work on fir the next day.
I try to do the most I can in a day, even though I regret it a lot. Our pool is finally set up so I’ve been swimming in it with my sister and parents. Today my dad put mya, my dog, in it. It’s an above ground pool, unlike my cousins which we usually go to, so we had to physically lift her in and out of the pool. She still loved it though. My dads going to build her some steps so she can get up without difficulty. When we first introduce mya to a pool she didn’t go in for a while. We would lift her up and show he where the steps were in my cousins pool, u til one day she just jumped in. Now whenever she goes in she never want to get out, which is really cute. She looks like an otter when she swims.
Anyways I’m going to attempt to sleep, that’s all for now,
Vanessa, brianna and I had a picnic the other night and watched the sun set.
This one looks like the us flag.
So as some of you may know I am going to be going into high school. I am being homeschooled throughout my 4 years due to health issues, but I was never homeschooled before this point. Anyways I will be trying to post twice a day. Somedays it might be once a day I dont know it just depends on the day.
Back onto topic though. So I am obviously in Paris right now. My parents, brianna, and I are trying to travel every 6 months or so. We went to Florida esrluer in the year and then dc on the 4th last year. Were planning on going to a water park with vanessa. If you don’t kbow who she is, she us brianna and mines awesome vest friends who is also our neighbor. Ill probably do a post similar to my sisters on her blog about how we met her and such.
Were also planning on redoing our room. Brianna and I share a room which is decent in size, but for two people its not ideal. Were installing a ceiling fan, painting and patching holes in our walls, getting new bed frames and redecorating. Not that long ago we got new bedsaide tables and dressers so we dont need to update those. We also plan on changing our closet doors to sliding doors, sort of like barn doors that slide, since the wall that my bed is on is also the wall that the closet is on and since the closet is in the center of the wall it causes us not to be able to open that one door. I bought a couple prints that I’m going to use for the small wall space I have. Are bed frames that we plan on getting have shelfs on the headboards so we dont need to use our bedside tables. I just bought a new throw vlanket to put over a comforter or fluffy blankets. I also have a new wide vase that I already use and a small lamp from ikea. We are thinking about doing an accent wall of a off dark purple and painting the rest of our room a light grey. Ill probably post pictures of the process or leave a link of our YouTube channel which we might time lapse the process.
Thats all for now,