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.
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…
Wow. I just found out I have bad arthritis of both hips, I rely on IV nutrition to live, and I’m looking at a neck fusion. I am so terrified right now, not because of my health problems – those I can deal with. What scares me is how this government wants to treat me, because I was born with a genetic condition. Even if you don’t have a disability, you still live with this fear in your life.
In the ER to get my second dose of antibiotic. This is after waiting almost three hours to be seen. I was here last night with a kidney infection, and had to come back today for my second dose of IV antibiotics. It has to be IV because I don’t tolerate meds orally or through my tube. All this is because my infusion company in Colorado won’t accept a prescription from an Oregon doctor. Hopefully my primary physician will order the remaining doses. If not I’ll have to go to the ER when I get back to Denver tomorrow. Having a chronic illness is a full-time job. I’m still not sure if Medicaid will pay for all this either. At least I have Medicaid. If the AHCA passes I probably won’t even have that.
Even going on vacation is risky business. In Oregon visiting my partner’s family, and in the ER with a likely kidney infection. Having only Colorado Medicaid, I’m really worried about huge bills from all this. Wouldn’t it be nice if we had universal, national coverage? My friends in the U.K. And Canada likely don’t have these same concerns.
Exactly one year ago today, I woke up and it felt hard to talk. No one could figure out what was causing my speech problems (the neurologists at UCH actually told me that maybe I was just too tired to talk) and over the last year I slowly lost my speech. For the last month or so I’ve been relying on my iPad to talk, and I feared my speech might be gone for good.
Two weeks ago I saw my neurologist and mentioned the increasing pain in my neck. She prescribed a rigid neck brace to try to relieve some of the pain. While I was at the orthotist getting fit for the brace, he put one on and left the room. I decided to try talking just to see, and was shocked that my voice was back!! I started talking with the orthotist when he came back in, and mentioned that I couldn’t talk without the brace on. He almost didn’t believe me until he took it off, and I could no longer talk again.
This means a few things. First off I’m almost certainly going to need a surgery to fuse some of the bones in my neck together to permanently stabilize things at some point in the future. Until then, I will be wearing a rigid neck brace to stabilize my neck (and allow me to talk). I need to have a special MRI where I am sitting up to show which areas are unstable, because that’s when the problems occur. If I am laying completely flat and take the weight off my neck I can actually talk again, which is why MRIs with me laying down have looked normal. I never knew about being able to talk while laying flat until recently, because when I lay flat my reflux starts choking me.
It also means we’re 99.9% sure I have a genetic connective tissue disease, called Ehlers Danlos syndrome (EDS). EDS affects collagen, which is the most common connective tissue in the body and holds most organs and all joints together. It’s also in pretty much everything in the body, which is why I have problems all over. I heard it compared to toilet paper. Most people’s tissues are strong and not too flexible, like a 4-ply toilet paper. When you have EDS your tissue is the single-ply, bargain basement brand. It kind of works for a while, but in the end things fall apart and you’re left with sh*# 😜That’s why my neck is having problems, the ligaments have gotten so loose that it’s collapsing and can’t hold the weight of my head. There’s a chance some of my other symptoms could improve from treating the neck, but well have to watch and see. Ultimately though the EDS will still be there, and can cause the neuropathy, fatigue, and stomach issues I have, so I will still be severely disabled. Unfortunately, I have to wait until March 2018 to see the genetics doctor and confirm. Diagnosis is mostly based on clinical findings and I meet the criteria for the condition, which is how we’re so sure that’s it.
What a crazy year it’s been. I’ve been hospitalized 4 times, gotten feeding tubes, lost the ability to eat, ended up on IV nutrition with a port, started and stopped palliative care, got a c-pap, joined two nonprofit boards, completely lost my voice and then almost miraculously got it back, finally figured out what’s causing all this malarkey, ended up in a neck brace, met tons of amazing people with health issues similar to mine, and – also news!! – finished the first draft of my book about it all! Despite being a cripple, my life is still never boring.
The Pharmacy and Therapeutics committee of Colorado Medicaid met today. I’m the vice chair, and when the chair couldn’t make it, I ended up running the meeting with my iPad. It went pretty well, all things considered. One of my goals for the committee is to make sure there are medication options for tubies like me.
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.
This is the IV nutrition and medication I need to stay alive every day. (Apparently, I’m a messy eater… 😜) I have severe gastroparesis and intestinal failure from Ehlers Danlos Syndrome, and I am unable to eat or tolerate formula through my feeding tube. I am completely dependent on TPN (IV nutrition) to stay alive, and would have died last year without it. Medicaid pays for this life-sustaining treatment, which allows me to keep doing disability rights work and writing. Don’t let the AHCA pass! 24 million will lose coverage and people like me will die.