#lungdisease

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I was very unsure if i even wanted to share this with the world. But i want to keep it real #nofilter to show the not so rosy part of my life.
Today the wheelchair is my legs. My lungs and my body is in such pain. I have a hard time walking and due to my chronic adrenal failure i struggle big time on days like these.
Days like this is reminding me what i live with. This is also why i treasure the good days so much and why i am not concerned with the number on the scale. It is also why i am so incredible proud of how far i have come and how strong i am.
Today i am a captive in my body with terminal illness. Today i choose to show you because i normally look so "healthy". #BeTheChange #chronicIllness #disabledathlete #alphawarriors #myalpha1story #adrenalfailure #lungdisease #chronicpain #liverdisease #wheelsforlegs #TheOtherSideOfMe

I'm feeling better, so it's time for some Yoga πŸŽ‰
I did a little doping with prednisolon (cortison) to get control of my pain levels and it's working! :) For the moment this is the best we can do, but it's defnitley no long-term solution.
But who knows, maybe it just gets better on it's own. πŸ€—
#better #yoga #fit #fitness #gettingfit #cysticfibrosis #cyster #fighter #potd #cfawareness #cf #mukoviszidose #chronicdisease #chronicallyill #lungdisease #spoonie #oxygen #pain #prednisolon #cortison #lungs #doping

The strongest people are not those who show strength in front of us but those who win battles we know nothing about. #qotd #WorldPhotoDay The day of this #photoshoot it was beyond hot. My lungs were acting up. I used the beauty of my environment, (We shot at The Cloisters) around me to stay focused along with breathing exercises I've learned in yoga. I was able to avoid going into respiratory distress and we had an amazing shoot. As a kid living with a chronic illness I can assure you that although we face many challenges we are not defined nor deterred by them. Give us a chance and you will see #WeAreMore. πŸ“Έ @obianyanwu Dress @shellyglam.us #PCDHasNothingOnMe .
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#advocate #pcdawareness #primaryciliarydyskinesia #childmodel #curlyhair #instadaily #onetowatch #photooftheday #iamchloer #youngauthor #childrensbook #kidlit #motivation #inspiration #motivationalspeaker #chronicillness #childactor #shatterexpectations #styleblogger #tweenstyle #makewaves #TheCloisters #lungdisease #IAmMoreThan #yoga

Participating in some of what @brenebrown calls "full body vulnerability." Have you danced today? #lungdisease #bebrave #blacktarantula

Cystic Fibrosis Awareness Month.

Today I had a check-up which I get every three months. At these check-ups all CF patients have to do Pulmonary Function Tests. These tests show how well our lungs are functioning as CF primarily attacks the lungs.
These tests are important as they determine progression of the disease, if there are any lung exacerbations, the need for antibiotics, the need for hospitalizations, and the need for lung transplantation at end stage Cystic Fibrosis.
Everyone's lung function with CF is different. Some people can have very good lung function for a very long time and some may have poor lung function that declines quickly. It all depends on how well we take care of ourselves, if we do our treatments religiously, and severity of the disease.
In this video you will see me performing lung function tests. The major number they look at is our FEV 1. This is forced expiratory volume in one second, so, how much air I blow out in the first second. This number is a good indicator of overall lung function. My FEV1 today was at 88! If you don't know, that number is SUPER GOOD especially for someone almost being 30 with CF. To put it short, my lungs are still functioning normally! Woohoo!
This is day 8 of 31: Pulmonary Function Tests

Please watch, SHARE, and help spread awareness! Thank you! To share you will have to click the link in my bio to be redirected to another page!

#cfawareness #cfwarrior #lungdisease #justbreathe #cysticfibrosis

Each year, more than 4,000 people race up 94 floors at #HustleUpTheHancock to raise funds for #lungdisease research. The #NorthwesternMed team, pictured here, had an average time 20:81. Way to go!

I don't talk about my life much before I started working in the laboratory but in a nutshell I got pregnant in high school, dropped out and went to cosmetology school. I worked as a nail technician 2 years before I started college. While I was in this field I saw some funky looking hair, skin and nails which is what partially started peaking my interest in pathology.
I saw nails like this, and I was very interested to learn in school that fingernails can be a sign or someone's underlying health condition. This is called finger clubbing, and is commonly associated with diseases of the lung (such as lung cancer) and cardiac disease. It can totally be seen as just an idiopathic finding or one that happens for no reason without any underlying disease.
Some patients that have clubbing may not even notice because it occurs slowly over time. It is not really known why these patients get clubbing but studies have shown there is an increase of blood flow in the distal portion of the fingertips which may be a contributing cause.
#iheartautopsy #heartdisease #lungdisease #science #medicine #medschool #pathology

Test after test after test to get me ready to go home but something keeps coming up that delays that. I have a new friend to take home, her name is oxygen and she adds to the hassle that I already am to my friends and family, who wants to go out with someone with an oxygen tank and who has to monitor her heart rate and might still need a wheelchair? My goal was to shoot issues, I need so much oxygen with exerting myself that might not even be possible, my posi attitude has dissipated. I weigh 144lbs, I look repulsive and weird. It's all getting to me now. #lungdisease #invisibleillness #autoimmune #hospitalchronicles

Sissy's build a bear gift from her Stanford surgery brings Paloma smiles yesterday. Awake now, still with a breathing tube. Hopes its gone real soon! Day 9 ICU @chocchildrens #miraclebaby #fighter #lungdisease #chdawareness

MOST RECENT

Get the VIP treatment at the Breathe & Brew September 9, 2017. β €
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#BreathenBrew #yoga #Beer #indy #indianapolis #Breathe #fundraiser #lunghealth #asthma #COPD #lungcancer #lungdisease #cleanair #breathebetterβ €

"Super Girl" by Ciara Hurtado
This original drawing by Ciara will be arriving in the mail to a 7 1/2 year old girl, Jordyn, who's been in & out of the hospital. She's fighting a rare lung disease called Non-Specific Interstitial Pneumonia or NSIP for short. There are only about 200 children with this disease. NSIP is life shortening, even with treatment. πŸ’™πŸ’›β€οΈ
Jordyn loves Super Man so Ciara drew her as Super Girl! πŸ’™πŸ’›β€οΈ
#supergirl #fightingforjordyn #supermanfan #redcape #hope #faith #bestrong #jordyn #NSIP #lungdisease #rarechilddisease

I'm feeling better, so it's time for some Yoga πŸŽ‰
I did a little doping with prednisolon (cortison) to get control of my pain levels and it's working! :) For the moment this is the best we can do, but it's defnitley no long-term solution.
But who knows, maybe it just gets better on it's own. πŸ€—
#better #yoga #fit #fitness #gettingfit #cysticfibrosis #cyster #fighter #potd #cfawareness #cf #mukoviszidose #chronicdisease #chronicallyill #lungdisease #spoonie #oxygen #pain #prednisolon #cortison #lungs #doping

We may be living with a chronic illness, but we must remember to live LIFE with a chronic illness. Even if it takes us longer to do things, or need assistance- "it does not matter how slowly you go as long as you do not stop." ~Confucius πŸƒπŸ’
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#yardworkmodified β˜€οΈπŸŒ³#livingwithchronicillness #chronicillness #pulmonaryhypertension #lungdisease #lupus #heartvalvedisease #oxygen #inogen #pacemaker

I was very unsure if i even wanted to share this with the world. But i want to keep it real #nofilter to show the not so rosy part of my life.
Today the wheelchair is my legs. My lungs and my body is in such pain. I have a hard time walking and due to my chronic adrenal failure i struggle big time on days like these.
Days like this is reminding me what i live with. This is also why i treasure the good days so much and why i am not concerned with the number on the scale. It is also why i am so incredible proud of how far i have come and how strong i am.
Today i am a captive in my body with terminal illness. Today i choose to show you because i normally look so "healthy". #BeTheChange #chronicIllness #disabledathlete #alphawarriors #myalpha1story #adrenalfailure #lungdisease #chronicpain #liverdisease #wheelsforlegs #TheOtherSideOfMe

I took a class today, with one of the most powerful fitness gurus, something i never thought my lungs could handle, but i did the whole 40 mins with minimal breaks and max effort πŸ’ͺ
#toughworkout #gains #superproud #achievement #accomplishment #sweat #determinedtosucceed #mindsetiseverything #mindbodyandsoul #mindovermatter #cardioclass #youcanachieveanything #noexcuses #fitnessmotivation #workouts #fitness #fit #lungdisease #alpha1warrior #alpha1fighter #overcomefears #challengecompleted

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