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Marbles: Mania, Depression, Michaelangelp & Me by Ellen Forney #Books #graphicmemoir #BookReview #BipolarDisorder #Bipolar1Disorder

Wow this Graphic Memoir is absolutely BRILLIANT and SO RELATABLE if you live with Bipolar Disorder! Excellent depictions of #Mania and #Depression and so glad this book exists so people who have been diagnosed or who know someone with Bipolar can help understand themselves or others and hopefully get the help and support they need! 10/10 would recommend! 👏🏽👏🏽👏🏽#Representationmatters #Bipolar1Disorder #BipolarDisorder

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Playing an Autoharp in recliner life

Xandra has an instrument she can play reclined.
She gets lessons over Skype. It's pretty awesome that she can play her own music and accompany herself.

#Endometriosis #ChronicPain #ChronicIllness #reclinerlife #Music #Barbie #Representationmatters

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Patient Records Networks are Awesome

Xandra can take some time for self reflection today. She was working from home to be able to call the doctor's offices and get her records transferred to the new surgeon she's going to see.

It turns out that all 3 hospitals where she sees doctors are part of the CareEverywhere. All she has to do is sign one form so that the surgeon gets access to all of her records - GI, Pain maintenance, Pharmacology, GYN, General Practitioner.
#Endometriosis #ChronicPain #ChronicIllness #Barbie #Representationmatters

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Trust People with Disabilities to tell you what they need

Xandra's friend Fanw wanted to invite her to a party but wasn't sure how to make that happen since Xandra can't sit for long.
She invited her and asked how to make it work for Xandra. Xandra brought her own camping recliner so she could have a comfortable place to be.

The party was a great chance to spend time with friends. Xandra wouldn't have been able to come if Fanw hadn't been so sensitive to her needs, and to trust her that she could come up with a solution.

#ChronicIllness #ChronicPain #Accessibility #Inclusivity #Representationmatters #Barbie #Fibromyalgia #Endometriosis

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holidays are about being together

Xandra knows the holidays are about spending time with the people you love, not specific traditions.

She had a lovely Thanksgiving, but no turkey. Takeout made the day easier for her to manage.

#ChronicPain #ChronicIllness #Barbie #Representationmatters #Endometriosis #Pelvicpain #Fibromyalgia

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Accommodation is important

Sometimes Xandra can feel self conscious about all the things she has to take with her:
* A backpack with work items, food, pills, heating pads, extra clothes, TENS machine
* A purse with her wallet and other personal items
* A folding recliner so she can go to an event afterwards

Her Lyft Driver Misty reassures her that it's no bother and helps her get everything loaded and unloaded.

Making sure Xandra has what she needs is important and she is grateful that she has such a helpful driver. She let's Misty know that Lyft drivers are essential to her way of life. It's not an easy job, but she hopes that knowing how much they help her makes it feel more worthwhile.

Xandra also knows that tips are a very important part of the income for any driver, so she tips at least 5 dollars or 20% for rides, whichever value is higher.

#Lyft #ChronicIllness #ChronicPain #Accessibility #Disability #Barbie #Representationmatters

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Ride services help people with mobility issues

Xandra gets everywhere by Lyft these days. She'd rather drive herself but between her pain and her meds she knows that that isn't a safe choice.

Her Lyft drivers are nearly always kind and fun to talk to.

She often thinks about people who are less mobile than her. It's easy for her to get into an SUV like this one, but that's not true for many riders. The drivers have told her that they have to help many people get in.

She's talked to Lyft about adding a setting to their app to exclude any trucks or SUVs but Lyft isn't listening.

#Lyft #ChronicIllness #ChronicPain #Accessibility #Disability #Barbie #Representationmatters

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Stay informed and organized

Xandra knows that no amount of googling will give her the answers she needs about her health, but she wants to be informed.

She researches her conditions, the medications she's taking, and possible treatments. She makes sure she has accurate records on her prescriptions, and medical history - she syncs the information to her tablet and phone so she has it in the office. She also prints out a copy to take with her to the doctor.

This is her least favorite activity to do on her computer, but it really helps her take care of her health.

When she has a chance she posts on The Mighty about her adventures. #ChronicPain #ChronicIllness #Fibromyalgia #Endometriosis #ThoracicOutletSyndrome #Representationmatters #Barbie

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Don't be a fashion victim - take care of yourself

Xandra loves to glam it up, but wearing heels made her a fashion victim. She learned that due to a hypermobile sacrum the heels encouraged a sway back that she didn't feel until the pain got bad and it was too late. She switched to wearing negative heel shoes which help the problem.

She gave her favorite shoes to friends like Myfanwy. And they look great in them.

#ChronicPain #ChronicIllness #Hypermobility #SpoonieFashion #Barbie #Representationmatters