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#mitochondrialdiease medias

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I am SO proud of my mom for volunteering and then getting asked to work at St. Hubert's Animal Welfare Center. They are a way station where they have pets sent to them where they have an over abundance of animals. For example my mom helped volunteer where St. Hubert's transported over hundreds of dogs from Puerto Rico to their shelter and also send them to other shelters who need more dogs. My first dog was from St. Hubert's so they also have a special place in my heart. Check out their amazing website www.sthuberts.org they do great work!

________________________________________________________#believeinyourself#justlive#mitochondrialdiease#ehlersdanlossyndrome#chronicillnesswarrior#mentalhealthmatters#model#chronicloveclub#modeling#headshot#photography#blonde#blueyes#fashion#wlyg#followyourdreams#dreambig#love#fun#instagood#travel#travelgram#studiolife#nyclife#pop#indiepop#indierock#adoptdontshop#singersongwriter
I am SO proud of my mom for volunteering and then getting asked to work at St. Hubert's Animal Welfare Center. They are a way station where they have pets sent to them where they have an over abundance of animals. For example my mom helped volunteer where St. Hubert's transported over hundreds of dogs from Puerto Rico to their shelter and also send them to other shelters who need more dogs. My first dog was from St. Hubert's so they also have a special place in my heart. Check out their amazing website www.sthuberts.org they do great work! ________________________________________________________#believeinyourself #justlive #mitochondrialdiease #ehlersdanlossyndrome #chronicillnesswarrior #mentalhealthmatters #model #chronicloveclub #modeling #headshot #photography #blonde #blueyes #fashion #wlyg #followyourdreams #dreambig #love #fun #instagood #travel #travelgram #studiolife #nyclife #pop #indiepop #indierock #adoptdontshop #singersongwriter 
So today I met with a vascular surgeon (who deals with the veins in your body) and after extensive ultrasounds and testing it has been confirmed I need a Port placed and it's happening on WEDNESDAY. I don't feel ready and to be honest I'm scared but there's not much I can do about it. It will definitely be an adjustment but I know I will eventually adjust. Positive vibes are appreciated💕 the second and third pic is what a port basically is and they access it by putting a needle into the port into your chest and getting blood draws and infusions that way. Right now I'm mad and upset with my situation but it will only make me stronger💪🏻 ________________________________________________________#believeinyourself#justlive#mitochondrialdiease#ehlersdanlossyndrome#chronicillnesswarrior#mentalhealthmatters#model#chronicloveclub#modeling#headshot#photography#blonde#blueyes#fashion#wlyg#followyourdreams#dreambig#love#fun#instagood#travel#travelgram#studiolife#nyclife#pop#indiepop#indierock#vocalist#pianist#singersongwriter
So today I met with a vascular surgeon (who deals with the veins in your body) and after extensive ultrasounds and testing it has been confirmed I need a Port placed and it's happening on WEDNESDAY. I don't feel ready and to be honest I'm scared but there's not much I can do about it. It will definitely be an adjustment but I know I will eventually adjust. Positive vibes are appreciated💕 the second and third pic is what a port basically is and they access it by putting a needle into the port into your chest and getting blood draws and infusions that way. Right now I'm mad and upset with my situation but it will only make me stronger💪🏻 ________________________________________________________#believeinyourself #justlive #mitochondrialdiease #ehlersdanlossyndrome #chronicillnesswarrior #mentalhealthmatters #model #chronicloveclub #modeling #headshot #photography #blonde #blueyes #fashion #wlyg #followyourdreams #dreambig #love #fun #instagood #travel #travelgram #studiolife #nyclife #pop #indiepop #indierock #vocalist #pianist #singersongwriter 
What a Day 🙄😴 didn't turn out how I planned and this is def an old pic and not how I looked today but onwards and upwards... ________________________________________________________#believeinyourself#justlive#mitochondrialdiease#ehlersdanlossyndrome#chronicillnesswarrior#mentalhealthmatters#model#chronicloveclub#modeling#headshot#photography#blonde#blueyes#fashion#wlyg#followyourdreams#dreambig#love#fun#instagood#travel#travelgram#studiolife#nyclife#pop#indiepop#indierock#vocalist#pianist#singersongwriter
What a Day 🙄😴 didn't turn out how I planned and this is def an old pic and not how I looked today but onwards and upwards... ________________________________________________________#believeinyourself #justlive #mitochondrialdiease #ehlersdanlossyndrome #chronicillnesswarrior #mentalhealthmatters #model #chronicloveclub #modeling #headshot #photography #blonde #blueyes #fashion #wlyg #followyourdreams #dreambig #love #fun #instagood #travel #travelgram #studiolife #nyclife #pop #indiepop #indierock #vocalist #pianist #singersongwriter 
New cover coming soon ! 🌙✨ The best medicine is my music even though I'm on like a million meds and was at the doctor 💁🏼 ________________________________________________________#believeinyourself#justlive#mitochondrialdiease#ehlersdanlossyndrome#chronicillnesswarrior#mentalhealthmatters#model#chronicloveclub#modeling#headshot#photography#blonde#blueyes#fashion#wlyg#followyourdreams#dreambig#love#fun#instagood#travel#travelgram#studiolife#nyclife#pop#indiepop#indierock#vocalist#pianist#singersongwriter
New cover coming soon ! 🌙✨ The best medicine is my music even though I'm on like a million meds and was at the doctor 💁🏼 ________________________________________________________#believeinyourself #justlive #mitochondrialdiease #ehlersdanlossyndrome #chronicillnesswarrior #mentalhealthmatters #model #chronicloveclub #modeling #headshot #photography #blonde #blueyes #fashion #wlyg #followyourdreams #dreambig #love #fun #instagood #travel #travelgram #studiolife #nyclife #pop #indiepop #indierock #vocalist #pianist #singersongwriter 
IVIG tomorrow... hoping for minimal side effects! Would appreciate some good vibes ❤️ sending love to anyone fighting a battle that they can't control.

________________________________________________________#believeinyourself#justlive#mitochondrialdiease#ehlersdanlossyndrome#chronicillnesswarrior#mentalhealthmatters#model#chronicloveclub#modeling#headshot#photography#blonde#blueyes#fashion#wlyg#followyourdreams#dreambig#love#fun#instagood#travel#travelgram#studiolife#nyclife#pop#indiepop#indierock#vocalist#pianist#singersongwriter
IVIG tomorrow... hoping for minimal side effects! Would appreciate some good vibes ❤️ sending love to anyone fighting a battle that they can't control. ________________________________________________________#believeinyourself #justlive #mitochondrialdiease #ehlersdanlossyndrome #chronicillnesswarrior #mentalhealthmatters #model #chronicloveclub #modeling #headshot #photography #blonde #blueyes #fashion #wlyg #followyourdreams #dreambig #love #fun #instagood #travel #travelgram #studiolife #nyclife #pop #indiepop #indierock #vocalist #pianist #singersongwriter 
Wishing this was my view right now... my health has been a little all over the place with allergic reactions, increased dislocations in my joints, gtube probs and more. Some days I start out my day great much like today and then things change in the matter of minutes. I'm trying to take things day by day... minute by minute and try and see the positives in my life while allowing myself to be upset with my situation. It's all about trying to balance everything with is super hard with chronic illness!! Thinking about all of the people out there that are fighting today and everyday ❤️ ________________________________________________________#believeinyourself#justlive#mitochondrialdiease#ehlersdanlossyndrome#chronicillnesswarrior#mentalhealthmatters#model#modeling#headshot#photography#blonde#blueyes#fashion#wlyg#followyourdreams#dreambig#love#fun#instagood#travel#travelgram#studiolife#nyclife#pop#indiepop#indierock#vocalist#pianist#singersongwriter
Wishing this was my view right now... my health has been a little all over the place with allergic reactions, increased dislocations in my joints, gtube probs and more. Some days I start out my day great much like today and then things change in the matter of minutes. I'm trying to take things day by day... minute by minute and try and see the positives in my life while allowing myself to be upset with my situation. It's all about trying to balance everything with is super hard with chronic illness!! Thinking about all of the people out there that are fighting today and everyday ❤️ ________________________________________________________#believeinyourself #justlive #mitochondrialdiease #ehlersdanlossyndrome #chronicillnesswarrior #mentalhealthmatters #model #modeling #headshot #photography #blonde #blueyes #fashion #wlyg #followyourdreams #dreambig #love #fun #instagood #travel #travelgram #studiolife #nyclife #pop #indiepop #indierock #vocalist #pianist #singersongwriter 
Today was officially my last day for the semester!! I said I'd do a health update so I'll try and keep it short. I have an infection that's being treated with antibiotics. I officially start IVIG tomorrow luckily a nurse comes to my house to do it. I start with a loading dose for 4 days and then it's only once every three weeks. I'm getting pre-meds since I get migraines so I'm hoping that helps. I'm going to be stuck inside a lot! Anyone have any good low key activities that they do to keep them busy? 📸 @sophiemayanne @behindthescars_ 
________________________________________________________#believeinyourself#justlive#mitochondrialdiease#ehlersdanlossyndrome#chronicillnesswarrior#mentalhealthmatters#model#modeling#headshot#photography#blonde#blueyes#fashion#wlyg#followyourdreams#dreambig#love#fun#instagood#travel#travelgram#studiolife#nyclife#pop#pianist#singersongwriter#behindthescars#scarsarebeautiful
Today was officially my last day for the semester!! I said I'd do a health update so I'll try and keep it short. I have an infection that's being treated with antibiotics. I officially start IVIG tomorrow luckily a nurse comes to my house to do it. I start with a loading dose for 4 days and then it's only once every three weeks. I'm getting pre-meds since I get migraines so I'm hoping that helps. I'm going to be stuck inside a lot! Anyone have any good low key activities that they do to keep them busy? 📸 @sophiemayanne @behindthescars_ ________________________________________________________#believeinyourself #justlive #mitochondrialdiease #ehlersdanlossyndrome #chronicillnesswarrior #mentalhealthmatters #model #modeling #headshot #photography #blonde #blueyes #fashion #wlyg #followyourdreams #dreambig #love #fun #instagood #travel #travelgram #studiolife #nyclife #pop #pianist #singersongwriter #behindthescars #scarsarebeautiful 
It's Cystic Fibrosis Awareness month, and even though I know it's cheesey I'm posting my meds! These are for today, the bottles contain pills that can't be mixed in with others. Some of these are for my #mitochondrialdiease and this obviously doesn't show my nebs. #cfawareness #thesicklife #medicated #chronicillnesses  #chronicpainfighter #keepingitreal
"Your body deserves to be loved it's the only one you get..." So honored that I got to shoot with @sophiemayanne for #behindyourscars!! She is truly talented and made me feel beautiful in my skin even with every scar ❤️
________________________________________________________#believeinyourself#justlive#mitochondrialdiease#ehlersdanlossyndrome#chronicillnesswarrior#mentalhealthmatters#model#modeling#headshot#photography#blonde#blueyes#fashion#wlyg#followyourdreams#dreambig#love#fun#instagood#travel#travelgram#studiolife#nyclife#pop#indiepop#indierock#vocalist#pianist#singersongwriter
"Your body deserves to be loved it's the only one you get..." So honored that I got to shoot with @sophiemayanne for #behindyourscars !! She is truly talented and made me feel beautiful in my skin even with every scar ❤️ ________________________________________________________#believeinyourself #justlive #mitochondrialdiease #ehlersdanlossyndrome #chronicillnesswarrior #mentalhealthmatters #model #modeling #headshot #photography #blonde #blueyes #fashion #wlyg #followyourdreams #dreambig #love #fun #instagood #travel #travelgram #studiolife #nyclife #pop #indiepop #indierock #vocalist #pianist #singersongwriter 
"If only in my youth would I have spoken the truth, soaking in these heavy feelings please give me some magic healings." - new song excerpt written by me 📸 @displayicons 
________________________________________________________#believeinyourself#justlive#mitochondrialdiease#ehlersdanlossyndrome#chronicillnesswarrior#mentalhealthmatters#model#modeling#headshot#photography#blonde#blueyes#fashion#wlyg#followyourdreams#dreambig#love#fun#instagood#travel#travelgram#studiolife#nyclife#pop#indiepop#indierock#vocalist#pianist#singersongwriter
"If only in my youth would I have spoken the truth, soaking in these heavy feelings please give me some magic healings." - new song excerpt written by me 📸 @displayicons ________________________________________________________#believeinyourself #justlive #mitochondrialdiease #ehlersdanlossyndrome #chronicillnesswarrior #mentalhealthmatters #model #modeling #headshot #photography #blonde #blueyes #fashion #wlyg #followyourdreams #dreambig #love #fun #instagood #travel #travelgram #studiolife #nyclife #pop #indiepop #indierock #vocalist #pianist #singersongwriter 
So after the poll results I thought I'd do a medical update! 
For new followers I have quite a few rare illnesses. My main one is Mitochondrial Disease, but I also have Ehlers Danlos Syndrome, adrenal insufficiency, endometriosis, ADHD, OCD, and many more! Having these conditions is like a part time job between doctor appointments, treatments, testing, ER visits... etc. but music is what gets me by as well as my friends and family ❤️ keep fighting beauties! If you have any questions my DM is always open.

________________________________________________________#believeinyourself#justlive#mitochondrialdiease#ehlersdanlossyndrome#chronicillnesswarrior#mentalhealthmatters#model#modeling#headshot#photography#blonde#blueyes#fashion#wlyg#followyourdreams#dreambig#love#fun#instagood#travel#travelgram#studiolife#nyclife#pop#indiepop#indierock#vocalist#pianist#singersongwriter
So after the poll results I thought I'd do a medical update! For new followers I have quite a few rare illnesses. My main one is Mitochondrial Disease, but I also have Ehlers Danlos Syndrome, adrenal insufficiency, endometriosis, ADHD, OCD, and many more! Having these conditions is like a part time job between doctor appointments, treatments, testing, ER visits... etc. but music is what gets me by as well as my friends and family ❤️ keep fighting beauties! If you have any questions my DM is always open. ________________________________________________________#believeinyourself #justlive #mitochondrialdiease #ehlersdanlossyndrome #chronicillnesswarrior #mentalhealthmatters #model #modeling #headshot #photography #blonde #blueyes #fashion #wlyg #followyourdreams #dreambig #love #fun #instagood #travel #travelgram #studiolife #nyclife #pop #indiepop #indierock #vocalist #pianist #singersongwriter