All posts by rxjackson

Off to nj with tpn

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!

New AFOs

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… 

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…

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.