Stephanie Renne hasn't added a story.
Hi, I’m Stephanie - @coloradojawn - and my story may sound like a broken record similar to others who have had to struggle through chronic illness. I have been battling undiagnosed chronic illnesses since 2006 after adventurously spending my 20s living in 7 states, 2 countries, & exploring the world in between with my music & library studies. I’m currently living near Denver, Colorado, where I was born and raised until the age of 14. I love to write, play music, make art, learn new things, be outdoors, & I thrive on social interaction. I am a soft soul with a lion’s heart. I am a poet. I am a multi-instrumentalist musician with a mind that thinks in song.
I returned to the states with giardiasis after traveling, that led to an exploratory laparoscopy to remove adhesions, & was treated with two rounds of medication that got rid of the parasite. My immune system has never been resolved since & I have been struggling to figure out what is going on with my body. I always get sick when I never did before & often have flares of major fatigue and GI issues. I spent years single handedly going to doctors & specialists while living in Philadelphia & in 2016 got my milestone diagnoses of Fibromyalgia & Osteoarthritis. From there I advocated for FMLA from work & focused on figuring out my health as something still didn’t feel right. Struggling through autoimmune diseases can be extremely frustrating & confusing. As a librarian by trade, I did research, worked to get to the top specialists & in the past three years I have succeeded to find proper diagnoses illnesses that have plagued me for years.
...Fibromyalgia - Osteoarthritis - Osteopenia - Migraines - Generalized Anxiety Disorder with Panic Attacks - Major Depressive Disorder - GERD - Pelvic Floor Dysfunction - Dysmenorrhea - Neuropathy - Sinusitis - IBS - Vertebral Compression Fracture - Hashimoto's Thyroiditis - Asthma - Muscle spasms - Chronic fatigue - Chronic Pain - Eosinophilic Granulomatosis with Polyangiitis (EGPA) with Lung Involvement - Granulomatosis with Polyangiitis (GPA)... just a few, right?!
I was hit hardest when I was diagnosed with EGPA/GPA in November 2018 on my 36th birthday, which are vasculitis diseases that are life threatening if not treated immediately. A month later I progressively got worse & couldn’t keep up working full time. I was let go from my job, applied for disability & won on the first try without a lawyer based on my determination to get better, but unfortunately had my partner leave me because he couldn’t deal living with my chronic illness anymore. With all of those factors combined, & learning that the leading expert in these diseases is in Denver, I recently moved home to Colorado after 22 years from being away, leaving my kitties fostered with a friend in Philly, to where I now have the familial support to get well that I didn’t have before. Most difficult part is that I am without a car in the suburbs, so do not currently drive & have issues with my abilities with mobility as I am healing so I have been isolated because of it.
I think the Alinker would be a game changer for me in helping me to return back to being the adventurous Stephanie I want to be . At the moment in dealing with my illnesses, I have reactions to side effects from changes in medications, regular Fibromyalgia flare ups, can get sick from being on immunosuppressants & simply going out anywhere in public, & have become so weak that I have had to start walking with a cane. I need to lose weight & get moving to help my illnesses & their symptoms. It’s the only way I will get better is if I keep moving & strengthen everything in my body that has weakened. With the Alinker I would be able to go out independently without help from anybody, could stay out all day running errands or wandering an art festival because I would have the ability to rest as well as move, & most of all I feel like it would get me back out to being a real person again, interacting with the world, instead of being held back by my sickness I would be given freedom to not be bound by my fatigue & constant pain, but instead supported to focus on my healing, wellness and mobility, not my disabilities.
Please consider donating to help get me moving again. Alinker runs all the funding for me and nothing is charged unless I reach my goal. This organization is amazing & is helping me to find a way to heal, it would mean so much if you could contribute to #getmemoving & help me focus on my #mobilitynotdisability.
With a grateful heart, Stephanie
The campaigns are about sharing. Most people have no idea what life is like when you live with MS or what happens after you have a stroke. Isolation is often a bigger problem than the symptoms of the disease itself. With the campaigns we can share and educate people, because it can happen to all of us. When we create a movement where people simply show up for each other, it might get a bit ‘safer’ and less ‘scary’ to engage with each other. Some people share their experiences on their campaign, others share their funds to support the campaigns. It is not about asking for money, it is creating an opportunity for people to learn and show up with #generosity. Being generous resonates with who we are as humans. We understand generosity deeply and when you practice it, you feel so much better
PLEASE NOTE
- The campaigns are in Canadian $ (back end requirement on our side), the $2800 CAD includes the Alinker, shipping, process and campaign fees and our support.
- The campaigns are all or nothing, no credit cards are charged unless the campaign reaches its goal.
- As soon as the campaign reaches its goal, we ship an Alinker.
- Campaigners do not handle money. On disability or welfare, you cannot handle money without being penalized, but you can receive an Alinker !
- When the campaign raises more than the goal, the campaigner can chose another campaign where we then make the donation to, paying it forward, or get the balanced paid out, the choice is the campaigner's.
- If you want to start a campaign and are outside Canada or the USA, write an email to molly@thealinker.com. We can get a shipping quote to where you live, and include that in the campaign goal.
Together we build a movement of kindness and generosity, because we all need it
Why do we facilitate crowdfunding on our site?
We believe that the Alinkers should be available for everybody, regardless of income and people who start a crowdfunding campaign here, will have access to a life changing Alinker. Did you see how happy Selma Blair is using her Alinker? Her anxiety dropped from level 10 to 2 after she got back on her new Alinker. She is so happy and so on with this new invention, that she wants to create a fund to get people access to Alinkers. These crowdfunding campaigns are the first step to make Alinkers available for everybody. Selma and BE are now putting their energy together to build a generous community around all the campaigners! The campaigners are people who allow others to show up generously, give them love!
Why an Alinker?
Generally, medical devices are a technical solution for a body with a
problem.
The Alinker is designed for who we are, a whole human
being, who wants to live an active and engaged life. We are a human,
we have a body. Whether we miss a leg of have MS, it does not change
us as a person.
Yet the world we live in, treats us as a body with a problem, which creates a social divide between people based on their body, based on what we have, not on who we are. Isolation and loneliness are more devastating than the disease itself. So we need to show up for each other, acknowledge each other and be present to who we are.
These campaigns are here to bridge the gap between a high quality custom Alinker, and the people who live at the receiving end of a 'sickcare' system that drives people into poverty.
So, show up, be radically generous, it is something we humans really understand.
When you read each story in each campaign, pause and imagine who
that person is, and why they started the campaign, reach out to them,
let them know they are surrounded and seen, heard and not alone. When
we do that, we feel better and create a safer community where we know
we can show up for each other. It connects us with our essence, we are
radically generous creatures, we just got a little lost in systems
that are not designed for our wellness.
Who is the Alinker for?
The Alinker is for people who want to stay active, regardless of mobility challenges.
To operate and use the Alinker you must have the ability to:
- walk to some degree
- flex and extend your legs
- bear weight on one leg briefly while getting on and off the Alinker
- be consciously aware of your surroundings
- be aware of your ability and limitations
What is the Alinker?
The Alinker is an exceptionally cool, three-wheeled walking bike
for humans with mobility constraints. It’s not a medical device,
it’s a lifestyle tool, designed to enable users to lead active and
socially engaged lives — at eye level.
On the Alinker, users sit upright -- at eye level with standing
companions. Weight is supported by the seat with no stress on the
lower body, while handle bars provide additional support. Feet remain
on the ground, keeping users stable and safe.
Together we'll make this work, in kindness and from the heart
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