Just some quick Late Night Thoughts

I’ve been having problems expressing my feeling lately. I’ve tried writing poems and blog posts about what I feel but I can’t seem to put it out into words. My anxiety has been growing and I don’t know why, maybe it’s because of health. I feel like my life is surrounded by my cystic fibrosis. My parents always say don’t let it run your life, control it, because in reality it’s only a small part of it. Which is true in some way but it’s so hard when it feels like it’s taking over.

I think about what if I didn’t have it, and then I promptly freak out. If I didn’t have it I don’t know where I’d be. I would probably still be dealing with some mental health issues because honestly what teen isn’t these days? I’d be in public school, not go to the hospital every month or so, not be on so many pills or have so many responsibilities. But I wouldn’t be as caring, understanding, so grateful of everything. I try to look on the bright side, because in reality if I didn’t have Cf I don’t know where I’d be or honestly who.

Update+Dog Pictures

Hello peeps it’s been a little while…so let me tell you about it. First mental health, yup I’ve got depression and anxiety big surprise there. Some things that come with it are lack of motivation and decrease in interest in hobbies, especially recently. Yes I love art, it’s more than half of my blog, but it’s hard to make art when I have no motivation or interest. It doesn’t mean I’m not doing it, I’ve been making a lot of resin jewelry but I need interest and motivation for that because it’s a long process and is time consuming.

My anxiety’s been up and down, I’m not having full on anxiety attacks but I’ll have random increases of it throughout the day. I recently switched meds for anxiety and depression and it’s still not at the right dose so we’ll see how that goes.

My school semester finished one or two weeks ago and I was really behind so I needed to work hard to finish my courses, I got up in the middle of the night multiple times to work on school because I was so stressed I couldn’t sleep.

I got a cold over the weekend and ended up throwing up Tuesday night, surprisingly only once. I started feeling bad Sunday night and Monday but I thought I did to much over the weekend, my body had other plans. I had a fever til Thursday and I didn’t start feeling relatively better until Friday.

I love this blog and everything but it will take some time for me to go back to a regular schedule, I’m also going on vacation for a week starting Sunday so I will be posting pictures and such of that.

~A&R

Admission

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

-A&R

2:11am

I can’t sleep

It’s 2:11am

My mind is a jumble

I’m upset

I’m angry

Confused

Guilty

Depressed

Why can’t I just be normal

Why when I’m happy it never lasts

Something bad always happens after

I feel hopeless sometimes

It’s apparently a symptom of depression

Which I have

But why does my list of issues keep growing

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Sorry if this poem is depressing but aren’t a lot of poems depressing. I like writing, it helps me cope with stuff that’s going on. Usually I write when I’m upset and please take into consideration that some things I write in poems I don’t feel all the time. Yes I’m depressed but medication and therapy helps, but I find that what helps the most is having someone you can count on to talk to. I don’t talk about my mental health on here to much just the occasional poem, late night thoughts, stuff like that.

I’m kind of dealing with some stuff right now, so sorry if I don’t upload to much this up coming week.

-A&R

My Illness: A Poem

Sometimes I hate my illness

I mean really hate it

I feel as though I’m always canceling plans

Staying indoors

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

So forgiving

So responsible

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?

-A&R

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

Motivation

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I’m currently sitting at my desk watching Unbreakable Kimmy Schmidt trying to figure out what to write. I haven’t had any motivation lately. Its taken me so long just to write this and sorry if I haven’t been posting lately. Depression is apart of this. I just want to sleep, I’m tired, I don’t want to eat, and I have no motivation. It might just sound like I’m lazy when I say I’ve just been sitting around the house but its hard to do stuff when your not motivated. I’m even struggling just to write this. Its not writers block because I have lots of ideas, but whenever I start writing its just bad and just sucks. I want to write good posts for everyone and some of them are informational so I can’t write a one or two paragraph post for something like that. I also don’t want all my posts to be about cf because I need a life away from my disease, but other times I post stuff about it because it helps me cope.

Some quick Updates:

I am starting school Tuesday, I am going to be doing online school, sorry if my posts next week are all over the place.

I am in the midst of making a wix website to sell some of my art on. The reason why I’m not using etsy is because I tried doing that and I did something so now I can’t use that account to sell stuff. Me and my sister talked about kind of making a clothes “line” of custom made t shirts and sweatshirts for cystic fibrosis.

That’s all for now, bye!