Some people who become chronically ill and/or disabled can point at a calendar at the date when their life changed. For others it is much more gradual. Initially I just thought I was worn out from a busy weekend, then thought maybe I was fighting off a cold, then realized something didn’t seem right but maybe a doctor could fix it, and then eventually, over time, it started to seem like it wasn’t going to go away any time soon. I also keep making connections to brief spells of symptoms at several other times in my life long before things got bad that seem like they could be related, so I can’t really pinpoint exactly when I got sick. What I can do is point at a calendar at the last day I felt good, healthy, energetic. And that day was five years ago today.
[Read more…] about 5 YearsAm I Still One of the Millions Missing?
May is ME/CFS Awareness Month.
A year ago I suspected that I had POTS and was waiting to be tested and seen by an autonomic disorders specialist, but I thought it was a likely diagnosis in addition to the probable ME/CFS I thought I had. No one seemed comfortable officially diagnosing me with ME/CFS, but I had doctors bring it up and agree that it seemed likely it was what I had, and my experiences in the patient community made me feel like I had found people who “got it.”
Last year I was involved with a local group of activists planning and organizing a Millions Missing visibility action in my city to raise awareness for ME/CFS and call for more research funding. I volunteered to print posters and brought multiple pairs of tagged shoes to represent people who were unable to make it to an event near them either because there wasn’t one close by or because they were bed- or housebound by their symptoms. I also put out a pair of shoes for myself to represent the life I was missing due to my own disabling symptoms.
This year I’m not so sure where I stand. (Postural pun unintended for once, but sure.)
5 Chronic Illness Travel Tips
Wow, it’s been a while since I’ve written anything here! The last few months have been pretty busy between being diagnosed with POTS at the end of May, starting a new medication in June, and then going on three different trips with family and/or friends over the summer (and getting a cold shortly after getting back from the last one which drew out the travel recovery). I’ll write more later about how I treat and manage my POTS as I continue figuring it out with my doctors (also keeping me busy and away from the blog), but for now I want to share some tips and tricks I used while traveling to balance participating in activities and controlling my symptoms. As I already admitted, I did get a cold when it was all done, so I probably could have paced myself a bit better. On the other hand, I made it through all the trips without bringing on too bad of a symptom flare, so I call it a win!
Autonomic Testing, Part Two – QSART, Deep Breathing, Valsalva, and Head-Up Tilt
As I already went over in Part One (which can be read here), the road to my autonomic testing appointment in a specialty autonomic disorders clinic was long and complicated, especially because it was an outside referral, but it finally happened!
To recap a little from the end of Part One, the testing involved a little preparation and holding certain medications, and I was also having a bit of a crash/symptom flare in the days leading up to it. This meant the actual day of testing was definitely not one of my best days, but this was probably a good thing (the doctor agreed) as it meant the testing could capture what goes on with me when my symptoms are at their worst.
In total, I was there for 2-3 hours, including the time to register and check in, get the tests set up, do the actual tests, recap a little after, and a then have little bit of recovery time. The tests done were:
- Cardiovascular testing with head-up tilt (essentially a tilt-table test), the Valsalva maneuver, and deep breathing
- Quantitative sudomotor axon reflex test (QSART)
I wasn’t really sure what these would all be like so I decided to approach it from the “curiosity” angle and just be ready to do whatever they told me to do. If you’d rather have some idea what it’s all like, read on! [Read more…] about Autonomic Testing, Part Two – QSART, Deep Breathing, Valsalva, and Head-Up Tilt
Autonomic Testing, Part One – The Outside Referral Obstacle Course
After a string of events that started with reading about postural orthostatic tachycardia syndrome (POTS) online, since many people with chronic fatigue syndrome (CFS) also have it, and ended with a neurology referral and a tilt-table test with a cardiac electrophysiologist within my network, I ended up with an outside referral to an autonomic disorders specialist. Before our consult appointment (which I have not had yet), the doctor wanted me to do some autonomic tests in their testing lab. That 2-hour testing session included:
- Cardiovascular testing with head-up tilt (essentially another tilt-table test), the Valsalva maneuver, and deep breathing
- Quantitative sudomotor axon reflex test (QSART)
BUT before I get to all that in Part Two, let’s talk about the major pain of seeing a new doctor outside your healthcare system when you’re used to an HMO… [Read more…] about Autonomic Testing, Part One – The Outside Referral Obstacle Course