Updated: Mar 15, 2019
The saying goes, that March comes in like a lion and goes out like a lamb, and let's hope that proves out because this month stormed in all teeth and claws and it'd be swell if it's exit was a bit calmer and quieter.
The homepage is late because SarahCate made the mistake of going to a museum exhibit on a Saturday... to see a lego exhibition. Which, any chronically ill person knows is just ASKING for kid germs. It didn't even take 24 hours! Woke up the next morning with a sore throat, and am now 1 pill away from finishing a z-pack, one dose from finishing cough syrup and still not feeling even 60 %. Oh well. On the plus side, it was worth it, the lego sculptures were amazing!
In other news, one of our new shop sections is ALMOST ready to launch, so look for a new section specifically for toys and stuffies before the month is up, and as always, feel free to drop us links if you know someone making dolls, toys, accessories or stuffed animals that represent chronic illnesses, disabilities, rare conditions, congenital conditions etc. After that's done and launched, we'll be working on a section for grip/arthritis tools, and another for cannabis based products (creams, lotions, edibles etc- all without THC because... laws).
In the community the last few weeks have seen 2 major losses, and to be frank, they've each been heartbreaking and exhausting to process.
For those active in Facebook chronic illness/pain/disability groups, you already know of the passing of Dani Som. Dani was a powerful presence with a striking voice and the courage to stand in the face of prejudice and oppression and say, NO MORE. They spoke frankly and was not afraid to call out racism, and ableism, and transphobia despite the toll of the emotional labor that was often involved. Already, in just a matter of weeks, the loss of their voice in our communities is deeply felt.
And to those in the larger world of disability activism, the death of Carrie Ann Lucas has left us similarly bereft. Carrie's death can be directly linked to refusal by United health Care to cover medical expenses of around $2,000... ultimately costing somewhere around $1m in result. But more importantly, costing her family, friends and community the loss of a powerful and visible activist, friend, and loved one.
One of the hardest parts of being invested in our community is that these losses, be it from our conditions, from suicide, from medical neglect, etc. ... seem sometimes to be constant. In many ways, we are a fragile community- and we know it. That fragility is in no small part why our groups and smaller communities often become so tight knit so quickly. We understand each other in ways that the outside world just can't.
So to all of our community members, all those hurting by these and the thousands of other unsung, relatively unknown losses we send you all of our love and support and understanding.
There is a lot of loss in the life we lead as people in this community. But through it all, remember- this is just that- A Community. Embrace one another. Reach out. Be present. Be kind. To each other, to yourselves. Ultimately we are all we have: each other. Be a lamb in your own life- soft and kind and warm. You deserve all of that.
MARCH'S FEATURED SHOPS
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.
Help Getting an Insulin Pump
Hello everyone, my name is Audrey. Im currently 27 and have been living with type 1 diabetes for 25 years. I was diagnosed at the age of 2 and back then I had no idea what was going on, my parents cried and cried because because at that time my parents saw it as a death sentence. Since then though my parents have done everything they can do to make sure i can live life to the fullest, then adulthood hit. Since turning 18 i have constantly stuggled trying to get insurance, whenever i would get a plan i would be booted off after a few months because they kept upping the prices i had to pay until i was compleatly unable to afford it which as you can imagon it made being able to affored insulin alone. Now seeing as ive had this for so long theres been complications along the way, in the past year ive been having complications with Diabetic Retinopathy and for the past few years ive been going through insulin rejection where my body doesnt like to agree with the long acting insulin in on. Since moving across country to where i can get insurance its been helping tremendously, but heres the downside, the insurance does not cover insulin pumps. With all the issues ive had since turning 18 and stuggling with insurance its just another obstacle. Im asking for help because i want to live as long as i can with this. I want to be as healthy as i can be and build towards a future where i can help others. Anything will help and would be greaty appriciated. I wont be able to repay anyone but know i will be forever greatful for your help.
Help an Autistic Grad Student with Medical Debt
I'm a Ph.D. student, studying Latin American History at Georgetown University. I ran out of funding this year, and I'm struggling to find work; due to my disabilities, the number of jobs accessible to me is limited. At the beginning of this academic year, I was hit with a mandatory $2900 health insurance fee that I've been unable to get out of. Because I cannot pay this fee, I've had another $100 in late fees tacked on. Unfortunately, my family is in no position to help me with my expenses. I cannot even afford rent at this point; I've been staying with friends for the past several months.
Right now, I'm looking for $4500 to cover the following:
-$2900 mandatory insurance fee
-$100 in late fees
-$1500, or whatever I'm able to raise, to help with basic living expenses like food while I look for work and longer-term stable housing
It is not easy for me to ask for help, but I have no recourse at this point but to depend on the generosity of others. Even $5 helps.
Thanks for anything you can donate and any shares.
Help Us Expand
Chronically Alive is raising money to become more than just a small Etsy store and offer more options for sensory items, while also making production of said items easier.
The money will be used on equipment to make the whole process easier and finally get our own website to sell our wares, spread awareness and make our custom handmade sensory items more available.
Mermaid Creation Camp for Disabled Femme Momma
HELP ME BECOME THE MERPERSON OF MY DREAMS
I am thrilled that I've managed to score a dream opportunity- Fat Mermaid Creation Camp . It will be a long weekend of hanging with other fat babes, creating art and convening on body positivity regardless of size or health status.
As many of you know, I have been disabled for a few years now. It turns out that my whole life I've had a rare genetic disease that has worn down my already lax connective tissue. My muscles have to work overtime to support my bones and joints- so they are often strained and tight, or mis-fire inappropriately, or clench when they should release. The years of pain without a diagnosis has had lasting complications on my nervous system as well. It's a collagen problem, so it effects all of my body systems and tissues.
That has meant huge adjustments in how I see my future.
My aspirations, goals, and possibilities have changed. My relationship with my body has changed. My relationship to traditional wage-earning and work has changed.
One of the ways I'm working towards greeting those changes whole-heartedly and with curious disposition is exercise! Fat Kid Dance Party is something that I have always wanted to try out and see if it would be a right fit for me. I've watched the project as Bevin launched it a few years ago and this year, she's starting to do certifications for trainers on it! I want to explore if this is something that I: like, can do, can help others with, and can maybe get trained in.
Another way I'm changing my perspective is as a creative, artistic person. Many of you know that I've taken up sculpture, recently had my first poetry published, and have been exploring photography and modeling. These endeavors make my life worth living - they help me process, to share, to learn. I want to explore how to turn that fundamental need to create into a source of income for myself and my family.
I want to bring these things together and officially launch a business this year, but to make that happen I need a lot of insight from others and time to consider things outside of the c h a o s that is being the parent of a toddler.
This is a once-in-a-lifetime opportunity that I can't wait to share with you, my beloved friends, family, and community. Thank you for your support!
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!