Back Again

Well, heck. I thought taking this down was going to be fine, but I keep getting emails from people looking for old articles, so it’s back up now. Thanks to my good pal Sol for asking me a question that ended up getting the whole site broken and restored and making me think about it hard enough to realize I should just turn off comments on the problem posts and live with the spam. Comments are off more or less permanently at this point, and if I missed pages (I did. I missed a bunch) any comments left will likely not be answered. That said, I’m still available by email arizela @ will get me, though I don’t check every day anymore.

I honestly don’t know what I intend with this space going forward. But for now, enjoy the archives.

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Quick update

Hi folks. So I just don’t have time to update this site anymore. All the legacy content will remain available for folks who have a registered account, but otherwise, I am closing access due to high volume of spam comments and other issues with web crawlers.

Please be advised that this site auto-tracks IP addresses and that by making an account, you provide a few pieces of information that are retained by the site. I don’t do anything with them except on the off-chance I need to get in touch with someone directly in which case you might receive a person (not group) email.

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Updates and Diagnoses

Howdy folks!

I know it’s been a while since I’ve updated here. Life has been pretty hectic. I finished my PhD. Defended my dissertation in July, just a few days after breaking both my left arm and my left leg. I was in a wheelchair for 3 solid months because of the leg (no weight bearing) but I’m back up on my feet now and slowly building back up to being able to take long walks.

I also took a research postdoc position at the University of Virginia, where I’m engaged in pediatric research. The projects I’m working with are exciting and they are things I’m intensely passionate about. It’s a new feeling for me, waking up at 5am every morning thinking about my project and delighting in the complexity and the potential of the project to improve outcomes for kids in Appalachia and beyond.

So what’s up with the diagnoses, you wonder? I’m still waiting to find out, actually, but I spent this morning in a room with a specialist who started talking clinical trials and biopsies and delaying the need for transplant. Turns out my liver is showing signs of serious damage. I don’t drink, don’t smoke, I don’t use illicit drugs and I avoid even over the counter and prescription drugs when I can, my cholesterol is abnormally low, and I don’t have diabetes. All those things should be minimal risk, but my BMI is just a smidgen over the 30 cutoff for obesity, and my blood pressure is intermittently high, mostly because of my POTS, making it impossible to treat effectively, so that’s where the risk mostly comes from.

I’m not sure what this will mean going forward, but I know that there’s a long road of living and learning and research in my future. I know that there’s always hope for a well-lived and well-loved life. I know I have the support of my husband and daughter, and that I will work to be as productive as I can possibly be. A diagnosis of a potentially life-limiting disorder doesn’t change any of those things or who I am.

Years ago, when I was waiting to learn more about my broken heart, when I was waiting for a diagnosis and a prognosis and a plan that would let me move forward, I spent a lot of time writing on this blog. I mostly wrote about things other than my health. And it helped. I’m hoping it will help me out now, too.

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Flare Ups and Flashes in the Pan

Hello, fellows. I’ve been asked to provide another update on the POTS/IST saga. As people still regularly find their way here, I’m assuming there still isn’t a whole lot out there about these conditions. So… here goes.
It's me!
I am now in my fifth year of PhD study and almost ready to graduate! I’m working on my dissertation pretty much day and night and my body is not thanking me for it. I wouldn’t have to be working this hard if it weren’t for a very unexpected flare up I had starting February 28, 2017. I was taking physical therapy for arthritis of the spine (yep, that sucks), and had just left the therapy place to drive to school (85 miles each way). I got about halfway there when my heart rate shot up and I started getting dizzy. I’m still smart enough about listening to my body to realize that this is not a good sign, so I pulled over and parked the car, laid the seat down and waited about 10 minutes. HR back to normal. I sat up and waited 10 minutes. HR still normal. I pulled out and got another 20 minutes down the road when it happened again. And then again. Third time, I was seriously worried because on top of my HR being ~140-150 range, I also had a hard time palpating it even in the carotids because my pulse pressure was really weak (the pulse pressure is the strength of the beats, basically, the difference between the resting and firing blood pressure). So I called my husband, who wasn’t at his desk at work. So I called my mother-in-law and told her where I was exactly on the highway and instructed her to keep me talking and if I stopped and didn’t respond for 20 seconds to call 911. So that was scary.

My husband eventually called back and came and got me. I spent the next couple of days laying flat because every time I sat up, HR up, BP all over the place. I ended up in the ER 3 times for blood pressures up in the 180/130 range, which is serious stroke territory for someone who usually runs normal to low. And everything they did to help me made things worse. Sounds just like the first time I had an onset, doesn’t it? I recognized the signs. So I got on track with managing it right away. Got a decent cardiologist who actually listened to me and didn’t think I was an idiot because my letters spell critical care nurse specialist and scientist instead of MD. We tried another beta blocker, which worked but again the depression was bad. I ended up having suicidal images more than anything – I’d be in the bathtub and I’d suddenly have a mental image of the tub filled up with blood and my wrists slashed. That was pretty awful. My GP and my cardiologist were both aware of it, but we decided to stay on the medicine anyway and put my husband on Safety Plan Monitor. With the blood pressure being all over the place, stopping and doing all the non-medical management wasn’t an option.

Three months later, I was so sluggish and subtly depressed that I felt like I had bowling balls tied to my arms, I couldn’t bring myself to face taking a shower more than a couple times a week at best, and I barely managed to stay on top of my school work despite my professors being insanely kind and almost all of them letting me turn assignments in sometimes months late. I ended up going on an anti-depressant and teaching the course I was teaching while lying on my back – fortunately, it was an online course, so all my content was created while laying down and no one ever knew. My son had to drive me to school all summer and walk me into class to make sure I got there ok. I managed to sit up for class for 2 hours at a time, which was awesome, because nothing says “LOOK AT ME” like laying down on the floor in the middle of lecture and nobody wants that. I basically held on by my fingernails and teeth, and managed to get 40+ hours of work in every week, even though it was more like 20 hours of productivity by my standards. So I got pretty far behind on my dissertation project.

I’m still pretty far behind. I’ve got a few weeks yet before I have to turn the draft in. I’m still writing it up. But I’m feeling better. I stopped the beta blocker, cut back a bit on my thyroid meds to the lowest end of acceptable, and kept the anti-depressant because apparently NSRI works better than beta blockers for my IST. The POTS is still a problem. Lots of fatigue, fast heart rate when I am up and moving around, short of breath, some chest pain, palpitations. The whole deal. But I am functioning at ~90% capacity for actual work. At least I can work. I keep telling myself that, anyway.

It’s pretty terrifying to think that everything can be going well, grant funding and productivity and publications and my kiddo graduating high school and getting a job and moving out on his own and all that and then just wham! Out of nowhere. At least, it seemed like out of nowhere until I started reflecting on my life and realized that the deadlines and the overload of coursework and the tipping on the edge of burnout feeling I’d been having for 6 months were maybe a warning sign. That the 5 family funerals we attended in that span didn’t help matters. That my mom’s progressing cognitive issues and my son’s break up with an abusive girlfriend weren’t things I could just shrug off.

I’ve had to learn the hard way, once again, to listen to my body. But I’ve also figured out how to plan my life around it somewhat. I intentionally sought out teaching experiences that would let me work primarily online so that if I couldn’t stand for two hours and actively lecture I could still teach. I set up a virtual office space and used it to meet with my committee members. I figured out how to do the science that matters to me without having to spend long days hunched over a lab bench. I resettled my work space into a combination reclining chair and folding table+40″ TV as a monitor. It’s not ideal, but it works when it needs to. And, life goes on.

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