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[personal profile] cos
Someone in a Facebook group I moderate emailed me just now to let me know that they don't see me listed as a moderator anymore, and can't find my profile to message me. I went to Facebook to look, and it says "page not found" when I try to view my profile. It also acts like I'm not logged in, but when I try to log in, it takes me to the form for creating a new account.

Earlier today, less than 2 hours ago, I posted a video of some friends' band to my Facebook profile, so I know it was fine then. I don't know what happened, but if you noticed me missing there and know I have this account here, now you know.

Does anyone know how I can report this to Facebook and get my account restored? I've Googled for answers but am not finding anything helpful so far.

P.S. is a form for "My Personal Account Was Disabled" but Facebook's documentation says if my account were disabled, I'd see a message to that effect when I try to log in. Instead, Facebook acts as if my account doesn't exist at all. And indeed, when I try to submit that form, it gives me an error: "This email address does not belong to a disabled account".


Oddity #1: Facebook is still sending me email notifications, to the same email address that has been on my account for years. Even notifications about people asking to join the group I created and moderate, asking me to approve new people.

Oddity #2: When I try to log in with my correct email address and password, it just takes me to the front page of, where it prompts me to log in or sign up. But if I try to log in with the same email address but an incorrect password, then it gives an error message, "the password you've entered is incorrect". So it still has my login information.

I submitted a question at, no idea if they'll see it and write back.

UPDATE: 3.5 hours later, they responded to that request. I got an email "help us confirm your name", and my profile popped back into existence. The link from the email prompted me to confirm that the name I'm using is my real name, and to upload a photo of ID, which it said I needed to provide within 7 days.

So, did Facebook somehow think my name wasn't my real name, but their system was super buggy and it couldn't actually tell me that and ask me to provide ID until they got to my support request? Or, did something else happen to my profile, and they put it into this "confirm name" state as a way of reactivating it? No idea. Very strange, and very buggy.
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[personal profile] takingchargeofmyhealth
Inspirationporn, social media, and disabilities

Disabilities come in so many varieties. As someone who is invisibly and intermittently disabled I know this very well. Some days I question if I should even use the word disabled. I can move my body in any way I want. Shouldn’t that disqualify me?

On the other hand I have firm instructions from my doctor not to let my pain flare up. And I’m someone who gets flare-ups from walking, standing, and sitting. So that does limit my life. I can’t even begin to consider taking public transit. How can I convince people to give up their seats? I look healthy. And I’m probably going to be better in six months. I make a good living, I’m being accommodated without needing federal laws to protect me, and I’m grateful. Because the laws in the US aren’t very helpful for people with chronic illness or pain.

What about people who need wheelchairs for bad days but can walk on good ones? How disabled are they? That’s the question the government is asking right now. And it’s very damaging to people who need disability benefits and services.

We have a story in the Western world that there are many people taking advantage of the system (whichever one there is) who don’t need it. There has been a careful campaign of reducing funds and services for the disabled in many countries. I know it’s been a disaster for disabled people in the UK. And now the Trump Administration wants to monitor disabled people’s social media to see if they really need their benefits.

This Forbes article explains the impact much better than I can, I highly recommend reading it.

I’m scared for people who need the systems. I’m scared for myself in the future - I’ve had to invoke the ADA once and I left a job over it.

The world needs to learn about people with disabilities of all kinds. It needs stories that involve disabled characters without focusing on their disabilities. People need to stop seeing disabled people as those who are worthy of veneration for having difficulties (inspirationporn) and those who aren’t disabled enough to need help. People with invisible disabilities need a voice and representation too. People need to see disabled people living out loud and enjoying life, and this proposed policy is going to shut that down.

Our disabilities don’t define us, but that doesn’t mean they aren’t an important part of our identity. I’m living a mostly happy and productive life because I’m being accommodated. My friends visit me at home. My job lets me work from a recliner. I can afford to take Lyfts everywhere. We eat a lot of delivery, and I order a lot of things online. Without those accommodations my life would be harder. And in the scheme of disabilities I’m relatively well. I’m eager for representation. There aren’t stories in TV or movies or books (that I know about) about people like me, yet. I’m eagerly awaiting Get a Life Chloe Brown, one of the first books I’ve ever heard of that would fit the bill.

I’m not here to inspire or shame healthy people, writing about with my full life despite my chronic illnesses. I’m writing because I’m hoping to show that people like me can be happy. I’m hoping what I share can help others. I’m hoping that my story brings understanding for allies, and a feeling of being heard for other people suffering from invisible illnesses.
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[personal profile] takingchargeofmyhealth
A Day in My Life

I think many people in my life have no idea where my days are like. They are far less limited but my pain than they think. I also think it might be helpful to write down how my health does affect my days. I think my life is pretty great, and I hope this post shows why.

I wake up naturally at 5:30 am. I take my thyroid pills and opiate. The thyroid pills have to be taken 30 minutes before eating and 60 minutes before other pills except calcium which has to wait 4 hours.

I go back to sleep. At 6:30 my partner gets up and I eat breakfast, granola. Then I read, made some tea, take am5 more pills (muscle relaxant, Orilissa, add back progesterone, blood pressure medication, nerve medication) and had many bathroom breaks.

My constipation dominant IBS has a weird effect on my life. For about 2 hours after waking I have bathroom needs relatively frequently and I need to stay home during that timeframe.

At around 8:30 I shower and in alternating days wash my hair which needs more up time because I have to dry it. Luckily my hair is short. Then it’s 15 minutes for makeup, my morning indulgence. I grab my daily pair of patterned pants, solid top, and headband. Then jewelry.

I snap my badge into my waist band, grab my microwave meal and banana for lunch and wait for my Lyft. On a busy day I sometimes do work during my tea time or even take calls while putting on makeup or on my way to work. Sometimes I chat with my Lyft driver, I like to do that, but I’ve started meditating on the ride so I can get that time in. That’s crucial to my health plan right now because the meditation calms my central nervous system. Also often my blog posts are written in a Lyft.

Between 10 and 10:30 I walk from my Lyft drop off point to my office, which is about 5 minutes. I walk in, greet my team members and get started with my work day.

I’m a team lead for one project software development project. I manage the team, I plan our work, and I am the expert in what we do. I have 3 employees, and 2 on loan from another department. Despite being technically on this project only 50 percent of the time, 100 percent of the time I’m on call for this work. I dole out assignments, I help people get unstuck, I make decisions on how to proceed with the technical work. And I also do some of the technical work. The code is in C#, with Telerik testing framework as our automation tool. It’s a pretty big piece of software and growing daily. It’s also very object oriented and modular.

For the other team I’m currently the only person doing automation but that will change in time. That project is JavaScript with Selenium.

I spend my day as much in my recliner desk as possible while switching back and forth between the two projects, with different technologies. I answer questions and often hold meetings from my chair. I take my midday muscle relaxant and nerve medication dose. Also some supplements for my IBS. And chocolate which I share with my team.

I have a lot of very busy people to hunt down for answers, decisions or to give updates nearly daily. Phoning would work better for me but phoning requires them to be at their desks. So for those I walk around to find them, stand and hover until they talk to me, or take a seat in their offices. This isn’t great for my pain, but my body needs the movement anyway, and this part of my day is getting easier.

Most of my day is juggling responsibilities and solving problems. It’s often very chaotic. There are lists of things I’ve written down and mental lists of things to try and work on. I try to delegate as much as I can, but a lot can’t be delegated without more training and I don’t have a lot of time to train people more.

I’ve been trying to come up with an analogy for what my work is like for people who don’t program. It’s like working on a big research paper in German with lots of contributors and writing an epic poem in English at the same time. I have to switch languages and contexts all day, which is extremely taxing. I have to figure out rhyme schemes and copy edit other people’s writing. The calculations for the research aren’t coming out right and the printer needs an error cleared only I know how to fix.

It’s like working in two kitchens side by side. In one there is a team of chef’s preparing an elaborate feast. In the other I’m working on a dessert on my own with hand made puff pastry and an incorporated souffle. The ovens are finicky but I know how to calibrate them. The feast work is underway when we discover there are no ramekins. The event planner asks if we can add 5 more place settings. Someone slammed the door in the other kitchen and my souffle has fallen. I left out the quantities for key ingredients for the recipe for the feast so I have to go back and help. The event planner says we might need to add more people to the guest list, one of my chef’s is needed in another kitchen, and when will the first course be ready. In my own kitchen someone borrowed the kitchen aid. Due to allergies of guests I didn’t know were coming I need to change the delicate dessert on the fly. When is the desert going to be finished? When can the event planner come in for a taste test? Another chef has to go home because her child is sick. Can I interview another chef who might help in 4 weeks time?

I know this sounds like a nightmare but I love it. I need quiet days too, to do maintenance on the tools we use, to try out new techniques. I have those days once every two weeks or so. I love solving problems and training people. I love software. I love getting to make most of the bit decisions. Every day could be crazy, but I do well in chaos. Like a triage nurse I’m able to focus on what needs to happen first, what can wait until later, and I can make sense of the problems at hand.

I go home in a Lyft usually while talking about my day with my parents. Since my day usually involves a lot of problem solving it’s easy to forget that from the outside this doesn’t look fun. Sometimes my daily update is just a list of the unsolved problems and they might not realize how much I love it.

When I get home I tell a similarly stressful account of the triumphs and unsolved problems of my day to my spouse who mostly pays attention and tells me about his day. We mostly eat delivery, I manage to cook at most once every two weeks.. The standing while cooking is too much.

I might put my laundry away or do some dishes. While my partner works on hobbies and I catch up on news and social media on my phone we watch TV. Then most nights we spend some time snuggling in front of the TV.

He goes to bed early. Sometimes I watch TV then, or read, or meditate. Then more pills, an antihistamine and an antileukotriene for my asthma, another Orilissa, more nerve medication and two muscle relaxants, then bed.

Throughout the day I might be singing or accidentally dancing… that happens a lot.

I think other than the pills and some accommodations I need, like the recliner chair, my life is pretty normal. I have connections with friends and family, hobbies and I read and watch TV a lot. My health issues are frustrating, and I’m hoping to be less restricted in the future, but my life is mostly beautiful and satisfying.

On the weekends the mornings are pretty much the same but i often sleep in. Friends might come over and my Buddhist friends come over for study twice a month. I might do a Skype meal with my parents, or Skype with someone else. I’ve started going back to voice movement therapy which helps me be creative and connect with my body. The singing is an amazing outlet for me.


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December 2018

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