Suffer No Fools
This month's title is partly a nod to April fool's (of course) but also, an homage to Rabbi Emet Tauber who passed in March. Emet was an active member of the disability and LGBT communities, a supportive friend, a vocal activist, and not one to suffer fools.
In the days after his passing, we heard many folks talking about his relationships with him. The fact is, Emet often put in a lot of emotional labour to help others learn and grow, but for those willing to do so, he was a stalwart friend and supporter. In just the short time since his passing, his loss has been deeply felt throughout many groups and communities- both on and offline.
In happier news, here at PSS we FINALLY got our newest section up and running! There is now a dedicated page for Dolls, Stuffies & Accessories. Whether you have a child who wants spider man with a hearing aid, or your a toy enthusiast who just wants more realistic diversity in your own collection, we've found a bunch of shops and sites doing their part to diversify and accessories the toys and dolls we know and love (and create some we don't!) All 3 of our featured shops this month come from our new section, and we hope you'll check it out. There's something really special about having even play-gear that aligns with your own appearance and medical accessories.
And personally, in the happiest of news: SarahCate finally heard back from Social Security. After almost a full year since my review began- SS has finished their investigation of my appeal and... sure enough- I'm still disabled! It's a HUGE relief and such a big weight off of my shoulders. The last 10 months have been incredibly stressful and it's meant a lot of anxiety and fearful checking of the mail. Multiple frustrating trips to the SS office, fighting with various reps to keep my benefits during the process, and the constant terror that they'd ultimately revoke my disability- getting the letter finally acquiescing and agreeing that I am in fact, still disabled, still in need, and still qualified for benefits was cause for a lot of celebration. I started with a celebratory nap. Ya'll get it.
For now, we're still slowly but surely working on the other 2 new sections, and we hope that as Spring slowly crawls through the world (At least, in the US), that the weather becomes kinder to your bones and joints, that your pain lessens with the season's change and that April brings you a lot of peace... and fewer frustrations.
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MARCH'S FEATURED SHOPS
My Diversity Dolls
Upcycled Custom Diversity Dolls | Ships Worldwide from CAN | $62+
Just Like You Dolls
Dolls & Accessories with Disabilities, Medical/Mobility gear & More | Ships Worldwide from AUS | $10+
Feel Better Friends
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CAMPAIGN(S) OF THE MONTH:
Normally, each month, we feature 1-3 fundraising campaigns. We like to share these links so that visitors who have the means know where need may be and can help folks in our community who are trying to get access to care or equipment they otherwise can't afford. Because there are so many folks needing help right now, we're going to start sharing a few campaigns a month- in hopes that we can help spread the love as widely as possible. If you are able, please consider donating to one of these fundraising campaign to help those who need it.
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Help Ellis Perez Breathe Easy
My name is Ellis and I have Cystic Fibrosis.
CF is a genetic disease that essentially causes my body to create too much mucus in the lining of my lungs and digestive tract. This leads to problems with malnutrition, chronic infections, and progressive lung damage. (Read more about the disease here )
In the last year I have been hospitalized 6 times due to infections, most hospital stays lasting 2-4 weeks followed by 2-4 more weeks of IV therapy after discharge. I have become intermittently oxygen dependent and lost a lot of weight due to how harsh my medications are on my stomach. I have several chronic bacterial and fungal infections in my lungs that are hard to treat due to either antibiotic resistance or my allergies to drugs that treat these infections.
Basically I am reaching a point where without a lung transplant I cannot expect to make strides toward having a quality of life I want. Through discussions with my doctor I can expect my current lungs to last me another year or two at best. While I am not actively on the transplant list I expect that will happen sometime in the next year.
While I am lucky enough that my insurance will cover the cost of transplant, I hit another snag when planning for this surgery. Because of a certain bacteria in my lungs (burkholderia cepacia) my clinic will not be able to perform the transplant at their facility. In order to receive a transplant I will have to relocate from Minneapolis, MN to Durham, NC 1,100 miles away, to be treated at Duke University. I will also have to live in North Carolina for a least a year after surgery to receive all my follow up care.
I am hoping to raise funds in order to pay for a few things:
-Travel costs for my partner, my father, and I to relocate to NC -Hotel for my mother to be able to be with me during surgery/recovery -Deposit/first month's rent on an apartment -Food and transportation while I am in the hospital -A financial buffer for my mother and my partner to be able to take time off of work to aide in my recovery.
My partner and I as well as my family are both saving to make this transition as smooth as possible and to help ensure none of us have to worry about financial stress while dealing with this already emotionally draining ordeal.
I will be posting updates about clinic visits and life in general as I go through this process. If you aren't able to donate, social media is a powerful tool so sharing this would mean the world to me!
If you have more questions, want to point me in the direction of resources I may have over looked, or just want to send a kind word please feel free to reach out to me via email @ ellis.lynn.perez@gmail.com
CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE
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Alexa's Wheelchair
I'm Alexa, I'm 24, and I'm dying.
That's one hell of a way to introduce myself, I know. Unfortunately, it's also the truth. I suffer from vascular Ehlers Danlos Syndrome which has a nasty way of shortening one's lifespan, taking away mobility and causing excruciating chronic pain. I can't walk, and I use a half-manual wheelchair with electric support.
But as my joints, and so my mobility, declines, I find wheeling on it very painful, and also damaging to my body. I need joystick-operated fully electric wheelchair, but it is way above what I can afford. I'm living under the poverty line, I'm bedbound, and my caretakers - mum and younger sister - cannot work as they have to care for me 24/7. So, if you like me, or like what I do online, or just feel like you could help, please do! I need 50k polish zloty (around 11k euro/13k USD) for the kind of wheelchair I require.
Please help me raise it and make the rest of my life as comfortable and painless as possible.
CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE
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Help Me Get A New Chair
I’m raising money to purchase a new wheelchair. Recently, my insurance company denied my request for a chair - stating that it wasn’t “medically necessary” after my doctor and physical therapist sent in the request. They are basing this off of the fact that two years ago a completely different insurance company paid for an electric wheelchair that is in a DIFFERENT STATE and BROKEN.
When we explained that I no longer use a power chair and rely solely on my manual - they argued that I already have a chair.
The chair I currently have is WAY too big, and has been causing pressure ulcers in my ankle and knee. It’s also lead to shoulder issues because of how wide the chair is. I could really use your guys’ help with obtaining a new chair! Thank you so much.
CLICK TO OPEN THIS FUNDRAISER IN A NEW PAGE
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If you can't contribute, please consider sharing any of our featured campaigns on your social media! Someone you know may be looking for a way to give back and could make a huge difference in someone's life! You can also look at previous blog entries to see if other featured campaigns are still in need of help!