What are your diagnoses? Which one is causing the most problems right now?
rheumatoid arthritis, spinal stenosis, anemia, fibromyalgia, spinal lipoma, slipped right hip disc, ptsd, major depression disorder, general anxiety disorder, mood disorder, bipolar 1, obstructive sleep apenia, high triglycerides, diabetes 2. probably my fibro
Could you explain what a day in the life looks like for you?
i spend most days working! doing my 8/9/10 hour shift. spending 3-4 hours after that with content creating for youtube/instagram/etc. etc. eating while watching some tv, doing physical therapy moves and exercises, taking meds throughout the day, doing energy conserving versions of things like hygiene, cleaning, eating, etc. working my 3 other 2-3 hour part time jobs.
What are some complications of the illnesses you are living with that you are living with? Please include photos if you like of how your diseases affect you.
daily pain, brittleness, inflammation, hard time falling asleep and staying asleep, lower energy, energy being used up quicker, spending lots of time at appointments/medical complications, having to work overtime because i have no pto and any medical things i do is unpaid, different levels of ability depending on different days and unable to know ahead of time what level i am at that day, lots of money being put into medical care et al, limit the amount i can work regular and overtime(unable to work 4 10 hour shifts to makeup time, sometimes can only do the 8 hours in the day), unable to clean an entire room in one day, unable to make meals on the stove or oven, have to break up laundry really micro steps can only go to about 4-5 places in a day that include places that have powered scooters or lots of seating, can’t spend a whole day doing things. can’t go out and do things back to back like both saturday and sunday, can’t go to events or cons due to corona, must still social distance and six feet apart, still must wear masks still must avoid indoor time with others.
What kind of challenges have you faced in the medical system because of your diagnosis?
maintaining my muscle relaxers and immunosupressing medications and nerve medications. doctors will put me on something then not want to fill it anymore. or i become out of network and each visits costs hundreds of dollars for a med refill appointment.
What things have helped you to cope?
my 12 step program, my medications, combing doctors with alternative medicine like aromatherapy massage chiropractor, supportive family a job where i can see more appointments than usual and take breaks when i need to supportive doctors a group of friends who are also disabled.
What are things that bring you joy in life? Please include photos of these if possible (if you want to)
getting my nails done, getting dolled up, tea, comic book tvs and movies, massages, nice restaurants, little twin stars from sanrio, good friends, music, concerts, alternative fashions the internet and social media.
Please share your social media links if you like.