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.
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,
My Thanksgiving. Not eating is tough. At least I get to spend time with family.
Home from the hospital! In the 5 days I was there, I found my intestines must not be doing so well either. I ended up having to push a few meds in my tube during the day I went in, and I think that’s why my pain got so bad. 5 days of complete bowel rest and it’s almost gone. I flushed my J tube with 10 mL yesterday, and even that small amount left me bloated and in pain for hours. I also had to go on continuous drainage through my G tube to keep the nausea at bay, and it’s been extremely dark green the entire time.
I’m really hoping this is just a bad flare, as it’s been hard to even do liquids because of nausea (and they were getting sucked right out too). I’m hoping the continued bowel rest will help things. That being said, based on how my function has slowly been declining it doesn’t look great for the immediate future. Things can always come back some though! Fingers crossed!
At least we got my important meds switched over to routes that don’t use my GI tract, so I should be able to control pain from home for now. Palliative care is also coming on board, and I’m hoping that will help with quality of life issues. Not a completely wasted visit, but at the same time frustrating being in the hospital for days mostly for pain control.
I’m really glad to be home! Thanks for all the support!
I realized not everyone might know what TPN is. It basically means I will be getting most to all of my nutrition through an IV, as my digestive tract seems to be working less and less. TPN is essentially life support, without it I will likely die of starvation in a few months as I can’t eat more than a few hundred calories.
There are huge risks to IV nutrition too, the worst being sepsis and liver damage. This is a treatment that could very well kill me (5 year survival is 40-60%) but without it I’d certainly wind up dead. It’s scary, but necessary.
I have a really hard time thinking myself as ‘sick.’ That’s beginning to change as my symptoms get more severe, but each new thing becomes a new normal for me. Of course when I get used to a new thing the next thing tends to show up. Case in point, I just got used to tube feeds, and now there’s daily IV infusions of nutrients around the clock.
Funny story with the tube feeds too, occasionally when I see a character stand up on TV my brain thinks, “They forgot their backpack! They’re going to pull on their tubes!” Brains are weird.