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Not Standing Still's Disease
Fighting chronic illness one post at a time
Fighting chronic illness one post at a time


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Guess Who's Back? (rash is back)
Yesterday was one of the roughest rheumatic days I've had in a really long time. I woke up in extreme pain, with my hip feeling as though I had bursitis again. My knees and ankles were horrendously achy. It was so bad that I set up a ton of pillows, broke o...

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Nortriptyline Day 21
I called my neurologist's office the other day to update them on how the nortiptyline was working. After waiting five hours for a call back, I explained that this was helping a bit but not as much as I'd like. I also brought up nausea I've been having with ...

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911! Fight Against the Cassidy-Graham Plan
Not only do we have to fight to protect the ADA , we still have to fight for healthcare.  I'm starting to worry that this is going to be every fucking quarter, but I digress. You can read the 141-paged plan (referred to as Cassidy-Graham, Graham-Cassidy, Gr...

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Double-Duty PT Starts Next Week
I had my first spine PT appointment today.  My spine PT is great. She recognized my autonomy as an engaged patient and even recommended a textbook on pain to me. It has newer research in it, so I'm on the hunt. Most of all, I appreciated that she's funny, t...

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Financial Resources for Chronically Fabulous College Attendees
Are you a current high school student starting to look at college next year, but wondering how to financially pull it off while living with health crud? Do you know one? Here's a great collection of financial resources for chronically fabulous students look...

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CBD Resources
With how much many patients have been utilizing CBD (Cannabidiol) oil, I wanted to list some resources here for people to learn more about it. Sites: Cannabidiol Life   In addition to listing various ways you might find CBD , they've pulled together a large...

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Nortriptyline, Day 9 & Spine PT
First, the nortriptyline update: The nausea is still strong. I spent all morning yesterday running errands post-doc appt while trying not to throw up. I'm still dealing with headaches - well, until this morning, because I finally got some real sleep. My app...

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SOS: Take Immediate Action on HR 620
I know there's a lot going on in our world right now. Please take a moment to help us disabled Americans, though. HR 620 is being discussed today. This bill severely limits the civil rights of disabled peeps highlighting violations of the Americans with Dis...

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Help Tell the World: #PatientsHavePower
I am proud to announce that we are official participants in the Patients Have Power campaign run by Clara Health  (who runs the Breakthrough Crew !). This campaign is a Boston based initiative aligning the world’s epicenter of healthcare around one message:...

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Nortriptyline, Day 5
Last night was my fifth dose of nortriptyline. As noted previously , there isn't expected to be much improvement until later on once the medication has been able to build up in the system. The nausea is easing up a tad, though not much. It seems to be more ...
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