LUPIE LIFE

HOUSE of ELEVEN fashion line owned by Darcy & Stacey of the reality show on TLC, is offering Lupie Life followers a 20% discount on the butterfly hoodies shown below. They come in two colors blue/pink and gold/pink use BUTTERFLY20 at checkout!

entyvio infusions will not stop my animal crossing grind. also shoutout to my nurse named Ed he rocks. his wife is also a nurse who is working in the ICU and she is a rockstar. thank you healthcare workers 💜

Thank you so much Jennifer Sprosty for your Birthday donation in memory of your Mother in-law. We here at Lupie Life appreciate your donation and hope you had a wonderful Birthday!

an older lady yelling at a teenager at a bagel store to wear gloves, a lady giving my mom a dirty look and scuffing at her for coughing when my mom has a nodule on her lung, NOT the corona virus. i know you guys are scared, i know you guys have anxiety, but stop being rude to others. you do not know their story, how on edge they are, or how they feel. BE KIND. leave your dick behavior at the door, because that’s the last thing we need in this world.

update: i have a facetime therapy session at 3:30! i think it’s hella cool my therapist is doing sessions via facetime. i have a rheumatologist appointment tomorrow so i will be leaving the house (yikes!) i’m getting another cortisone injection in my shoulder because my injury isn’t getting better. also i gave myself a haircut two days ago and i’m really impressed with myself because it looks good so i guess beauty school wasn’t a whole bust. anyways i had coffee so i am enjoying this little bit of energy i have. and this sweater was for sale and it’s really cute i’m getting into the color yellow because it’s just so happy. okay, over & out. 💛

my quarantine fit. stay safe 💜

my new favorite sweatshirt! so comfy and a wolf with wings???? dopeeeee 🐺🦋💜

hiiii! i got ready last night at 7pm to feel a little normal. i recommend it, it feels nice for a moment. it seems we have a lot of moments with this pandemic. i cannot see my boyfriend, which is really hard because he helps my anxiety a lot and lord knows there’s a lot of anxiety in my bones right now. i think a lot of people are scared to feel right now. i just want you to know that you’re allowed to be upset about the small things, that aren’t small things to you. you’re allowed to be sad that you can’t see your loved ones, that you can’t get your morning coffee, that you can’t go to CVS to look at makeup and browse. we are not used to this. there is no way you’re supposed to feel. please be kind to yourself, this isn’t our normal. also thank you to anyone working in healthcare, people in the food industry, the truck drivers, the people who are on the front lines. i can’t express how grateful we are for you. you are the backbone of our society. Not the billionaires, not the CEOs, YOU are. this too shall pass, always. until then, be safe and be kind. 🦋💜

hi i’ve been off social media (mostly this account) because i don’t see any benefit to me scrolling through posts about corona or me watching the news. i’ve been home or at my boyfriends. i went into dunkin’ donuts today to get coffee and a donut and i was the only person in there. i did my benlysta injection today. i am not stopping any of immunosuppressants because of this pandemic. my mother coughed yesterday in the supermarket and this lady gave us a death look to which i said to her, “she has allergies, not corona.” i do not like what this illness is doing to humans. i choose to remove myself from the narrative entirely and only worry about me and my family and friends. i don’t want to hear or speak about it right now, as my mental and physical health isn’t interested. good luck to all and stay safe! god bless. 💜 (also, thanks to i became aware of the lupus virtual advocacy day and wrote a letter to my senators about lupus so thank you to Sydney!!! love you)

chronically ill people about the corona virus be like: oh now you understand how the chronically ill have to live. in my honest opinion, i don’t want people to know!! i want people to not worry about their health like i have to. i want them to be ignorant to the trauma i have faced from all my illnesses. i wouldn’t wish this s**t on my worst enemy!!!! please be safe. 💜 cut down your news intake, do a face mask, wash your hands as you ALWAYS should!!!!

there they go again! missing my veins! love infusions!!!!

what’s up, anyone else have a lazy eye? 👁i ate too many carbs and it flared up my IBS and i had my 5th benlysta injection today and i have an entyvio infusion tomorrow. i’m sitting here trying to nurse a migraine. i just feel very run down and overwhelmed. 🥺🧠

today i did EMDR therapy to work on my trauma from almost dying twice from lupus. it went pretty well. it’s an interesting therapy, i definitely recommend it. :) 💜🦋

injection #4! 💜🦋

it’s !!! this is my caregiver, my mommy. she’s my caregiver and best friend. she literally is the best caregiver in the world and she has NO COLON and she’s still rollin’. my mom suffers from many illnesses, but she still puts me first. the care she gives me is insane and i wouldn’t be alive without her (literally) thank you for watching hours of 90 day fiancé with me. 💜

i found this today in my drawer. when i was first diagnosed with lupus i was lost and scared. and after many needles and hospital visits, i was traumatized. i continued going to therapy, to control my thoughts. to vent about this evil illness that just randomly decided to wreak havoc in my 21 year old body. i couldn’t make sense of it, i was overwhelmed. one thing that seemed to help me was to write to myself as lupus. the letter is angsty and has messy thoughts but it did help me. it gave me some control, it gave me some power back. i recommend this exercise to anyone fighting an illness. 💜 (this is kind of hard for me to post due to the trauma i faced in 2017, but i am hoping it will help others.) 🦋

photo shoot with my little lupus frog!! thank you you’re the best 💜 he’s so cute and i love hiiiim 🐸

my mom did my THIRD benlysta injection today!!! i joined benlysta buddies on facebook and people in the group are really helpful. anyways i’m chilling, my nausea seems to be a little better lately and i’m doing a low carb diet (keto) which is really difficult but it seems to make me feel a little better with my IBS and colitis as well. also i scheduled my cardiologist appointment much earlier than it was to check out my breathing problems!💜 hope everyone has a good weeeek

hiiiii. i don’t know what’s going on but i’m having a really hard time breathing lately. i lose my breath after showering, after getting dressed, after putting a load of laundry in. i have a cardiology appointment next month but i’m going to see if she can see me sooner. i’ve had to stop and take a break after doing such miniscule things i hate it. i feel so weak and uncomfy 😔 here’s my pretty purple lupus butterfly necklace i treated myself to. 💜🦋

when you’ve had ulcerative colitis since you were 17, p**p is not a gross topic anymore. anyway, this is my p**ping partner, Delilah. she lays on my back every time I p**p and I love her. 💩🐱

hello! went out to dinner and i feel sooo sick. i’ve taken zofran, rizatriptan, flexeril, and some weird stomach medicine my GI gave me!!! now me and my chocolate lab, (lucy-seen in photo three not to be confused with chocolate cake) are ready for bed also i’m suffering haha chocolate cake wasn’t worth it goodnight !!!!

i now dub this the official lupus filter 🦋💜😝

my first benlysta injection! i’ve been on benlysta infusions and they’ve helped my symptoms soooo much but flared up my ulcerative colitis so i had to switch to entyvio infusions to help my colitis. my rheumatologist (after doing a lot research) has never heard of a case where someone was both on benlysta and entyvio infusions and he didn’t want me to be the guinea pig. since my colitis is now in remission (yay!) we’re starting off small with injections and if they help we’ll move back to infusions. 💜 i really hope these injections help like the infusions.

here’s one of my two chocolates, she’s a mood. anyways it’s so hard to find a therapist. my therapist who i went to for three years moved to a different state so i’m searching for a new one and i got stood up yesterday! the lady never showed up and the guy in the waiting room had the same appointment time as me. even after i left she never called me back. ever been stood up by a therapist? i’ve called like a million therapists and nobody is calling me back! i’m just trying to get my mental health back on track and the universe is not responding nicely.

when people say “get well soon” when you have a chronic illness 🙊

both hands have bruises on them from IVs on separate occasions... lovely 🙄

hello from the infusion roooooom! tired today as per usual but at least i have a big comfy bed thing 😷💉💃🏻 first infusion since colitis has been in official remission 😊

i didn’t fall asleep until 4am last night (morning lol) because i was in so much pain and couldn’t get comfy. i took tylenol pm and prescription motrin which usually helps but nothing was helping me last night. my boyfriend squeezed my wrists because pressure on them felt nice. today, i am in a lot less pain and it’s a little bit of a better day. if you can make it through the night, there’s a brighter day. 😊💜🦋☔️☀️

is over!!! my GI removed a polyp on my intestine and he said the entyvio infusions are working and i will continue them every 6 weeks.. and i’m going to take OTC IBguard for my IBS flares. 💊🥳💜

i haaaaate colonoscopy prep. i want to throw up... it’s something i seriously struggle with. 🥺

me in my natural habitat. it’d be nice to get pretty and dress up but i’m not going anywhere... which is fine with me 😴🙊

sleeping my days away...... the fatigue and my messed up sleeping schedule are very real. 1:45am and listening to ’ new amazing album. also mac miller’s new music video came out today and it’s very well made and beautiful. to everyone fighting your own war inside, we will make it to the other side. even if we have to claw our way out. 🦁🖤

hello!!! i’m sorry i’ve been a little MIA. my boyfriend (last picture) got me the switch for christmas and i’ve been playing fun games on it to distract me from the mess that is my life lol. i’m on ambien for my insomnia and it’s seeming to help. my stomach is very bad today. my lupus is just as bad as it’s been for the last few months. my doctor wants to find a way for me to get back on infusions. my endocrinologist said i have hashimotos aka lupus antibodies attacking my thyroid, making it run slow. i am trying to be thankful and grateful for what i have and i am, but i always just want my health. i dream of health. 🤍💭

hello my boyfriend has been diagnosed with the flu so i was wondering fellow lupies if i should get the flu shot? i’ve never gotten it before but i’m scared i will catch the flu and i know my body wouldn’t be able to handle it. so flu shot or no flu shot???

my hair is brown now!!! no more bleach destroying my hair. i am very happy and i’ve been baking christmas sugar cookies a lot. sorry i haven’t been updating. i’m getting normal people sick again and i just got over my month and a half long bronchitis so i’m a little discouraged. my inflammation markers were off the charts and i’m still very fatigued. just trying to survive minute by minute.

the nurse had a hard time finding my vein which is the story of my life. he started smacking them and poking and i have trauma from when i was hospitalized and they would do that so i felt like i was going to pass out. oh well, at least it’s over. shoutout to my mom for being the most supportive person in my life. 💜 (also i got two broken nails because i’ve been too fatigued to go get them done) (which i hate) (because my nails make me feel nice)

before i bleached my hair i had really pretty long brown hair and since all of my autoimmune diagnosis’ my hair hasn’t looked cute or healthy. i think i am going to go back to brunette but i would love to hear opinions. :) brown or blonde???? 🙎🏼‍♀️🙎🏻‍♀️ (i know what thinks 😝)

today i was eating french fries and my dad goes, “that’s why you’re getting transfusions for your colitis because you eat french fries.” first of all father, it’s infusions not transfusions. second of all, i will never stop eating french fries. the ignorance is strong in this one. 🍟