Hi all, I can pay $10 to have some photos I took color fixed (that’s probably not the technical term for it). It was a pretty bright day, and the colors are more muted than they looked in real life. NO AI, please!!!
Hi all, I was just diagnosed with hEDS, MCAS, and POTS/dysautonomia in July, plica syndrome and a bulging disc in my cervical spine in September. I also have chronic fatigue and am going through perimenopause, which is making everything much worse.
I work at a food bank and spend most time at a computer, but I also travel around the metro area for regular site visits (about three or four per month). This travel can be anywhere from 10 mins to up to over an hour. Twice a year, there are conferences that can be anywhere from an hour to six hours away, driving.
It’s really important to me that I continue working as long as I’m able, partially for my mental health but also mostly because I love the work and my organization. I also understand it’s nearly impossible to get on disability, and my spouse is currently unemployed.
My employer is extremely accommodating, from the supervisory level and all the way up. Essentially anything I ask for will be granted, so I’m curious what accommodations y’all recommend if you have done/are doing similar work. I’m definitely going to request a new chair at the office, though I tend to only go in once a week. At home and at the office, I have standing/sitting desks, and at home, I have a keyboard pull-out attachment to my desk. I’m not required to take sick leave for medical appts, and I can take breaks as needed. I also have a permanent handicapped parking permit.
Any and all recommendations are very welcome!!!
Edited to add: info to ensure this post fits the rules AND … the patchwork shirt was already patchwork, and the ruffle shirt was a men’s dress shirt from Goodwill. I do NOT want to overrepresent my abilities at this stage!
I decided I wanted to learn how to sew, so I bought some fabric and then a year later bought some more fabric and then a year later got real serious and bought a machine and the basic necessities. This summer I’ve made shorts and three tops and am really excited about it! I’m also very thrilled to learn I can upcycle anything from kid’s curtains to men’s shirts.
Shorts are the True Bias Emerson Pant/Short (my first ever sewing project, it took me about five tries before I used the tomato fabric because shorts with pockets and pleats as a starter project is insane as it turns out), fabric is Japanese woven cotton by Cosmo
First two shirts are the Box Top by Sully’s Upcycled found on Etsy, fabric is a thrifted poly microfiber sheet and a thrifted Pottery Barn children’s cotton curtain set
Second shirt helped me learn ruffles are insanely hard and was based on a YouTube tutorial by The House of Re, fabric is a cotton men’s dress shirt by Crown & Ivy
I was recently dx with hEDS by both my general practitioner and Dr Fisher (physiatrist, I’m fairly certain her books are now closed as well). She recommended an EDS PT, as well as a chiropractor, and from the first PT, I received a second recommendation for a pelvic health PT who also sees a lot of EDS patients. Because I’ve been on Providence health insurance, this has worked out really well.
Unfortunately, my spouse lost his job and we were getting the insurance through his employer. We’re currently paying for a COBRA plan till my open enrollment period at work (a cool $2,150/month), at which point I will switch over to Kaiser. I’m not thrilled about this, but it’s obviously not sustainable to keep the COBRA plan long term, especially due to the loss of income.
Are there any Portland Metro patients in the Kaiser system who have been seen for EDS? My general practitioner is a direct primary care physician, so luckily I won’t lose her, but I will lose access to Dr Fisher, both PTs, and the chiro (I should clarify that this is not a Kaiser issue, as they have a PPO plan - this is specifically a Providence issue because they will drop me as a patient as soon as I have Kaiser insurance. I even asked if I could pay out of pocket, and that was a resounding no). Dr Fisher’s MA did a google search and found two physiatrists in Kaiser who purportedly specialize in EDS, but when I looked them up, I didn’t see anything specific.
I know a lot of you are having difficulty getting a diagnosis and care, so the fact I’ve received any is a pretty privileged. As Dr Fisher said, “It’s a worksheet. Anyone can diagnose you.” But I really hope to continue my care if at all possible. My PTs and OT are checking in with their networks to see what’s available within Kaiser, and Dr. Fisher essentially told me sorry, I don’t know and I’m not going to look.
Thanks in advance for any help y’all can provide!