I was out today in the heat. I don’t sweat from dysautonomia, and my “CPU” got way too overheated. I’m running IV fluids from the fridge to try to cool me off. Anyone else feel like a cyborg? (The mask was because the smoke from fires in the mountains was setting off my mast cell activation syndrome)
At the beach in NJ almost two weeks ago now. I’ve been so exhausted I haven’t found the time to post it. In view: my atrophied legs, my (shower) neck brace, two tubes, and deaccessed port. Out of view: the beach wheelchair that got me down there and my dad, who pushed. I was glad to be in the sun, but going to the beach with ehlers danlos and intestinal failure is a lot of work. We were in Wildwood, NJ for 5 days and I only made it down to the beach twice, once with IVs hooked up. Still nice to do something normal for once.
I have a ten day trip to the east coast to visit my family. 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!
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’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.
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!!!
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!
So the medical malarkey is finally over. They sent me home on Saturday after making sure at least part of my tube was still in my intestines. Interventional radiology didn’t want to come in over the holiday weekend, so I had to go back yesterday to get my tube fixed. They did the change with no pain meds, and the whole area was already inflamed. I said ouch a few times. At least I got a shiny, new J tube out of the deal? Now if only we can figure out how to get it working…
Thanks for all your love and support!!! 💜💜💜💜