I have a ten day trip to the east coast. Mine is to visit my family though, while she learns to advocate about climate change. I’m not sure how she got 10 days TPN in two bags. It took me 4! These are just my medical supplies for the trip, including TPN, my c-pap, catheters, and TPN/hydration supplies. One year ago, I had to cancel this trip to get feeding tubes urgently, because starvation and dehydration were becoming a problem. Now, I’m alive and nourished thanks to TPN (IV nutrition). I am grateful for this treatment, grateful that Medicaid hasn’t been cut and pays for this, and grateful to be alive! NJ here we come! August is also gastroparesis awareness month, and we’re starving for a cure!
These boots were made for walkin. When you have Ehlers Danlos Syndrome and a partial spinal cord injury from Craniocervical Instability you need all sorts of braces to function better. These are my new AFOs (ankle-foot orthoses). My old ones didn’t support my feet enough, so I had to upgrade. The old ones looked like shin guards, so hopefully with these people won’t ask me if I’m a soccer player…
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…
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…
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!
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.
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!!!
Out in my manual wheelchair going to the Phamaly town hall meeting. This is my first time out on mass transit in my manual. The repair company was supposed to come today to look at my power wheelchair, but the tech called out apparently. Third or fourth time that’s happened. Now they can’t come out until Friday. At least the busses run door to door for this trip, and Rose can give me a ride home. It’s almost like someone taking your legs away for a week. Thank goodness I have the manual and don’t have to push myself far tonight.
Out at urology. The suspension on the left side of my power wheelchair is broken, as a piece fell off last week without me realizing. I wish I didn’t have to use it until I get it fixed, but the only backup I have is my manual chair, and my right shoulder is hurting again so that’s not an option. I hope I’m no doing more damage, but what can I do? At least I have my wheelchairs thank to Medicaid. Without them I would be stuck at home with no life.
I am a family practice physician, and I’ve known I’ve wanted to be a doctor since I was 4. I’m fairly intelligent, but I struggled in school and was never in the gifted program. Growing up, people would say to me, “You’re smart, why can’t you just ____.” I felt the same way, and had a low self-esteem and was hard on myself. I never felt like I fit in. I always wanted to, but I could never figure out what I was supposed to do.