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…
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.
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.
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 realized I posted about something medical without explaining it, and assumed everyone knew what I was talking about (like a typical doctor 😜)
I had an IV port put in last Friday. It is a device that sits just under the skin, and has two access ports. By sticking a special needle through the skin and into an access port, i can get IV access to one of the major veins near my heart, so I can get the IV nutrition I need daily. There are two access sites so that I can ru two different IVs at the same time, or give myself medications while running nutrition. Here’s a picture of what it looks like access with two needles in.
the port will allow me to remove the needles and go swimming if I want, or do other activities without having a line hanging out. Hopefully this will last me a long time
It’s been a tough couple of months. I’ve not been able to be on Facebook due to fatigue, but I thought I would try to poke my head up. At the moment I am getting all my nutrition from the TPN (IV nutrition) as I am unable to eat anything or tolerate anything through my feeding tubes.
This week is feeding tube awareness week, so I thought I’d post a picture of my tubes. I have severe gastroparesis and intestinal dysmotility, and am unable to eat. As a result, I am kept alive by my tubes. People like me rely on feeding tubes to be kept alive and to lead a full and productive life. Check out the website to learn more,
