ADA violations abound at my new apartment. I’ve been here a week, and already the elevator has broken twice. They insist it only happens every few months. Meanwhile I can’t get to my apartment. It’s not the only ADA violation…
Title vii of the Civil rights act
It continues. Now all LGBT people are under attack. The DOJ is challenging that title VII of the Civil Rights Act protects LGBT people from discrimination in the workplace. This is after a DOJ ruling under President Obama that we are protected. We hold these truths to be self evident, that all men are NOT created equal…
Ban on transgender in the military
Apparently, Trump now wants to ban transgender people in the military. USA RIP 2017.
Official Ehlers Danlos diagnoSis
It’s official! It took five years to get here, but we finally made it. I just heard back from genetics. Genetic testing for Classical Ehlers Danlos was normal, which means I have hypermobile Ehlers Danlos Syndrome by clinical criteria. The zebra is because thats what us EDSers refer to ourselves as. It comes from the med school saying that when you hear hoof beats, you shouldn’t think zebras – meaning common stuff is common. I guess, sometimes you should think zebras…
Sen. gardner protest interviewed
I was quoted in the Denver Post! We actually have 9 advocates upstairs, and there were three of us outside last night. Still good coverage.
Cory gardner sit-in
Heading downtown for the protests at Sen. Cory Gardner’s office. We’re still out here because, despite the delayed vote, we’re going to keep fighting until we get a promise that Medicaid won’t be cut. Save our Medicaid!
Shaving my head
I’ve always wanted to shave my head. Between being in a neck brace 24/7 for the next few months, and losing a good chunk of hair with the eventual fusion, I decided it was time. I’m pretty happy with the results.
Senator Cory Gardner
I stopped by Sen. Gardner’s office to drop off a letter, asking him to vote ‘no’ on the Senate version of the AHCA. Not only has the GOP been working on the bill behind closed doors, but it is expected that federal funding will be cut for Medicaid. This would ultimately cause me to lose Medicaid, and could very well cost me my life. The GOP needs to slow down and come up with a bill that improves coverage, not cuts it to provide tax cuts to the wealthy. Call your Senator today, and ask them to vote ‘no’ on any bill that cuts federal funding to Medicaid.
Aca repeal attempts
We are in crisis mode. The GOP is working on the Senate’s version of the AHCA, the ACA repeal bill, behind closed doors. We don’t know what exactly is going to be in the bill, but from rumors it sounds like it will be very similar to the house’s version of the bill. Apparently, the Senate is going to debate the House version of the AHCA for 2 hours, and the last amendment they will introduce before voting is a replacement amendment that will be their version of the bill. This means we might have hours at most to know what the Senate will vote on. What we do know is it will devastate Medicaid through spending cuts. This will mean I, and many of my friends with disabilities, will lose the benefits that let us live independently in the community. I myself would either end up living in a hospital or dead if I lose Medicaid, because it pays for the IV nutrition I need daily to live.
We are in a unique position in CO, because Cory Gardner could be the vote we need to stop the AHCA now. Regardless of which party you vote for, this would let us all have more time and transparency to know what is being decided behind closed doors. We are launching a state-wide campaign to call/write/email Cory Gardner’s office this week, and our goal is to have 5,000 people contact his office expressing concern. Call the Denver office at 303-391-5777, or go to https://www.gardner.senate.gov/contact-cory/office-locations for your local office and contact info.
If you have never done this before, go to http://www.protectourcareco.org/calling-congress for a sample ‘script’ of what to say.
Thank you for helping to save my life!!!
https://www.gardner.senate.gov/contact-cory/office-locations
A smoking gun
This is the smoking gun, so to speak, for what’s going on with me. If you’ve seen me in the last few weeks, you’ll know I’m wearing an impressive neck brace, but it lets me talk. This angle is the angle between my neck and my skull. That should be around 145, and less than 135 needs surgery to fix. The reason being my brainstem (which controls most of the vital functions in my body) is being stretched over that point. This is happening from weak ligaments from the connective tissue disease I have, Ehlers Danlos #ehlersdanlos . The part of my brainstem that’s getting poked let’s me talk, so as soon as I take the neck brace off, the speech problems come back within seconds. The fix is to have my skull fused to the first two vertebrae, and I’m in the process of finding a surgeon. I’m looking into one in Colorado who takes Colorado Medicaid #healthfirstcolorado , but if @sencorygardner and @senbennetco vote to pass a bill that cuts funding to Medicaid, I will lose my insurance and have no way to stabilize my neck. The neck brace isn’t perfect, and despite the improvement I’m still declining slowly. Never mind the fact that Medicaid pays for the IV nutrition that I need to live. Call your senators and urge them to vote no on any bill that cuts funding to Medicaid. The tax cuts will only benefit the uber wealthy too!