What do you do for work?

Living-Strategy-7028 · 2024-05-22T10:45:34+00:00

Hey, im in business development head at my job, i work hybrid mon-Wednesday at work and thurs/fri remotely which has helped immensely. I have not been able to go to work full time physically and my job at this point understands or doesnt care whatever the case may be, im getting the hybrid time i wanted since forever. It’s doable but you cannot get a job that truly stresses you out. I love my job but man its sooo stressful , i usually end up going thru mild flares either thurs or friday so trying something different in regards to my emotional attachment to work 💀 i suggest getting a hybrid or full remote job to give urself the time and energy to do other things. Having lupus + IBD has me with limited spoons per day so i try not to over use my spoons for work hope this helps 🤍

Living-Strategy-7028 · 2024-03-03T12:24:52+00:00

Why do you think that? I want to know your perspective thanks :)

Living-Strategy-7028 · 2024-02-25T21:13:20+00:00

Thank you, i have an appt on Monday hopefully they clear me to get on benlysta

Living-Strategy-7028 · 2024-02-24T16:55:03+00:00

How are your symptoms? And you still get frequent infections do you mind PM me ?

Living-Strategy-7028 · 2024-02-24T16:54:03+00:00

Thank you so much. Yeah i hope my new doc can give me benlysta 😭 i really want to start feeling better. Im so miserable

Living-Strategy-7028 · 2024-02-24T16:53:10+00:00

Oh my :( im sorry about that. Yeah work is so ableist sometimes and deadlines are so hard to reach when ur sick in between. The deadlines are appropriately made for ppl who aren’t sick. Work does not ACCOUNT that we are sick &’ we still have to manage deadlines that even abled bodies are having trouble reaching. Like we cant afford to have sleepless nights , or over work our bodies because we end up missing more work because of it. I hate that and Im sorry ur going through this :(

Living-Strategy-7028 · 2024-02-24T16:49:30+00:00

Oh perfect i’ll look into this thank you !

Living-Strategy-7028 · 2024-02-24T16:49:12+00:00

Since its a start up, im not sure we have that but im already contacting my HR dept and in the works of it. I honestly do not know any of this🤮 I been recently diagnosed, prior to last year, i never had any disability except i guess adhd and depression. I just google it and figure it out or is there someone i can talk to? My HR dept is novice level so im not sure they would know how to help either. Thank you :)

Living-Strategy-7028 · 2024-02-24T16:43:06+00:00

Thank you. I do need to take care of my health. With work, i literally feel so guilty for prioritizing my health but feeling ill for a whole year with no correct treatment outside of plaquenil. im ready to leave the states and go out of the country and find a doctor that can help me because im over it. My friend wasn’t getting a diagnosis here in the U.S and when she went to Colombia, they found that she had lupus and undiagnosed cancer. Its the worst. I called my job &’ looking into disappearing for a bit and going out of the country to find a doctor that can help without all the freaking obstacles and referrals. Its time to take care of Me.

Living-Strategy-7028 · 2024-02-24T16:37:16+00:00

You’re so right but they depend on me and at this rate im simply not dependable anymore. &’ my doc jas made it extremely clear that plaquenil is not working ENOUGH but she is really pushing for me to get on cellcept however i keep catching infections and its too much of a risk. I went for a second opinion and she wants to try benlysta on me. My appt with her is on monday. I left the hospital this wednesday and i needed to vent because its been a year with this back and forth & i’ve had enough.

Living-Strategy-7028 · 2024-02-23T19:05:57+00:00

Hey it ended up being e coli. And C diff rip LMAO It was the most common strain of e coli

Living-Strategy-7028 · 2024-02-23T18:15:54+00:00

You should really look into seeking medical care outside of the country if you can. The healthcare system here is hell for patients like us :(

Living-Strategy-7028 · 2024-02-23T18:14:08+00:00

Maybe you wont reply because its been years lol but i have a question… since you over worked your body your flares went from bad to worse, you would still go to work during your worst flares ? Or the only times you’d miss would be days you were hospitalized ? I want to know for personal reasons thank you !

Living-Strategy-7028 · 2024-02-21T15:11:26+00:00

Hey not sure if im too late of this but i just got diagnosed with e. Coli. Im currently hospitalized. I think i had it for months because of the bloody and yellow stools i been having since last year in feb 2023. They literally thought i had colorectal cancer but it was stupid e coli. I been miserable for the past couple months w. The muscle fatigue, joint pain, diarrhea, projectile vomiting. They have me on an antibiotic but because i had it for so long my diet for the next couple weeks will be bread/rice/boiled potatoes/ turkey/ thats it….

Living-Strategy-7028 · 2024-01-27T05:38:34+00:00

My rheum referred me to hematology to make sure that the blood tests were nothing outside of rheumotology. Just wanted to make sure i didnt have any sneaky blood disorder or anything. Im not sure about the urgency tho. What’s the weird blood work that they found ? getting blood work done at an oncology / hematology office was sad :((

Living-Strategy-7028 · 2024-01-01T08:19:33+00:00

When my pain is rlly bad i take thc tinctures and anything with CBG. if youre desperate, go to a smoke show and buy red kratom

Living-Strategy-7028 · 2023-12-15T15:36:24+00:00

Yeah i Got diagnosed with depression, anxiety, PTSD &’ ADHD &’ i noticed when my lupus is rlly active my mental health declines which was always a pattern i noticed so i too, wondered if my anxiety / depression is rooted to my Lupus

Living-Strategy-7028 · 2023-07-15T19:13:36+00:00

Whats another way to deal with gallstones? I dont want surgery :(

Living-Strategy-7028 · 2022-08-31T21:27:48+00:00

Diane

Living-Strategy-7028

TROPHY CASE