2015: What I Did Last Year Besides Not Dying

(Still waiting for wedding pictures to come in, but should have a new post up soon on that.)


But this blog wasn’t really intended to be about me as a bride. I’d always hoped I’d get a chance to be one, and I’ve waited a long time to wear a white dress. It’s been a long eight years. Hell, it’s been a long 2015.

This year started at a running leap into a brick wall of autonomic failure. I couldn’t get my medications straightened out. I was on massive doses of pain killers trying to get my symptoms under control. I spent the first few months in and out of the hospital--and finally, after a botched port surgery, I healed, and started to come out of the woods.

The port was good for me, because I know for Dysautonomia it’s what I need. It also exposed the dark underbelly of being a voiceless patient. I’d been going into surgery after surgery, on medication after medication in emergency mode for so long. I talked about the new fear of taking risks with my body.

By March I had begun to recover from the trauma, but I think I was still feeling majorly mopey about how I was going to gather myself up again and move on.

giphy copy

I decided that the best way to get back on my feet was to show myself that I could. So on a whim I bought plane tickets for a weekend trip to NY for R.J’s graduation. I decided that if I could conquer some of my anxiety about flying, then there could be hope for me to keep my head up emotionally overall.

Things started to look up. By April I was in negotiations for a second book deal with New Harbinger. Having a literary agent by my side and taking in the whiff of freshly printed contracts at Kinkos was uplifting.


In early may the wedding was starting to come together. We bought my dress and booked our venue. We went on our NY trip and R.J graduated with his bio degree.

The migraines came back without mercy and I spent a few months floundering as I tried to find the right medication that wouldn’t leave me a mess from opioids.

That month I was doing a lot of thinking about how big a part shame played in my disease and what I could do to combat it.

August brought gastroparesis flares with it–but it also helped me realize that my fluid intake could essentially end every flare. Turned out that if I flooded myself with about 3-4 bags of saline through my IV, my intestines would wake up! This revelation was a huge turning point in my disease–and for the first time in a long time I felt like I might have a chance of treating this disease without major medical intervention.

More good news? My opioid use dropped considerably when my doctor put me on a high dose of Depacote. Now my migraines were seriously less frequent and I had more warning which helped me to treat them BEFORE they became a hurricane.

The rest of the year passed in a bit of a blur of wedding planning and what felt like the most effort and strength I have ever put into keeping my body safe. I even put a status up on Facebook telling anyone who even thought they had a cold to disinvite themselves to pre-wedding festivities. And I was dead serious. I wasn’t going to let any symptom ruin the big day.


Anyways–as I intermittently catch you up on the last few weeks of excitment–I’m packing for my honeymoon and preparing our editorial calendar at Global Genes for the excitment-packed, fast-paced month of February–in which World Rare Disease Day occurs!

Jacqueline_Demos Health Contract_8-15-14-3


Oh, and about that book?

I still need your responses if you have them. I should also have a second post out with more questions later this month.

You can still answer the first set here.



  • Tara

    Hi. 🙂 So I randomly stumbled across this post – annnnnnd, I’m dying. I love your humor as you walk through these things. My 2015 was a year of tests and specialists and chaos. I was diagnosed only with ‘autonomic nervous system dysfunction’ and because my cardiologist said I don’t line up with anything more specific – and am headed to a specialist at Shands in Gainesville. In April. Last week was diagnosed with gastroparesis, and am going to see a specialist…….in March. I try to walk this path with humor and hope [i.e. telling the GI ‘it’s cool you can’t get me in for a month – I’ll get really skinny on this liquid diet!’]……and therefore, your posts are cracking me up. Thank you for finding the humor in what you can. And the GIF’s are the best. So, just thank you.

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