Philosophical

I’ve always been pretty philosophical about life and death. If you’d asked me as a kid how old I’d be when I died, I’d have told you maybe 26. I wasn’t a gloomy child though. I was just smart enough to realize that my body wasn’t normal, that my upbringing wasn’t normal, and that normal life expectancy probably didn’t apply to me.

I grew up in an abusive home, full of poverty and violence. I grew up frequently sick, hurting in ways that weren’t normal for a kid my age, and with a body that didn’t seem to cooperate with the usual rules of such things. When I was 8, I had a massive cyst about the size of a naval orange drained from under my right arm. All I knew was that it was a lump, and that they made me go to school with the drain tubing still hanging out and foul smelling gunk oozing into the wad of bandages that wouldn’t let me put my arm down. It took me a week to work up the nerve to ask my mother if it was cancer, and she assured me it was. (No, it wasn’t. Yes, she was the true cancer of my childhood, but that’s not really the point I’m making here.)

I remember penning a last will and testament in the thick, blocky letters of an 8 year old, knowing all the while that it was unlikely my mother would actually distribute my few precious items as I’d wished, but trying anyway. I thought I was dying because I’d watched my granny (great-grandmother) die by slow degrees from colon cancer. I thought I was dying every single day for over a year until I finally convinced myself I was safe, though there always lingered some doubt. And I went to school anyway. I got up and made breakfast for my baby brother anyway. I did the laundry and read books anyway. Because whatever time I had left, I meant to use it.

When my POTS started rearing up and long before we had an official diagnosis, I thought I was in trouble. Not dying, but possibly life-limited in other ways. And POTS has limited my life in some ways. I will never run a marathon, not that my knees would have let me do that anyway. I will never get back the two years I spent lying on my back, too sick to sit up or walk to the bathroom without help. I will never get back the lost energy or the lost time or the lost hope. But I adjusted. I figured out where the limits were and how to push them a little further out every day, and I got back up on the horse and rode toward the rest of my life. Lisa in Flordia

This liver thing seems to have knocked me down again. I’m having a lot of pain from it already, and a lot of chest pain (POTS + stress = stupid body days). I’m a bit more emotional than usual and I’m feeling like I need to re-organize some of my priorities. But I’m still philosophical about it. Nobody lives forever, and I’m no exception. I’ve known that since I was 8 years old. So here’s me, getting back up on the horse and riding on into the rest of my life. I’m going to keep working, keep writing, keep loving, keep planning. For however long I have left on this lump of spinning rock, whether it’s 4 months or 40 years, I’m going to keep on getting back up and riding on. I have sunsets to catch.

Speaking of sunsets, we saw some awesome ones in Florida two weeks ago. 80F and sunny in February? I’ll take it. Look, I even have a tan! (No, seriously. That’s tanned for me.)

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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, 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.

Posted in Broken Heart, life, Living with My Liver, Nursing | Leave a comment

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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When Life Gets Away From You

Did you ever have a day when so many things kept coming up that had to be handled right bloody now that you felt like you were a spinning top the whole day and the things you meant to do, prioritized doing, and actually wanted to do got shelved?

Yeah… that’s basically been my life for the last year and a half.

So here’s an update. Read as much or as little as you want. With any luck, my topsy turvy life will settle down just enough to let me post more often than annually, soon.

On Writing

Since the last time I posted, I learned that scientists are writers and that writing is a serious challenge for people who are learning to be scientists in general. I can’t tell you guys how very thankful I am for every single piece of writing critique I have received and ever single word I’ve put to the page for the last decade, because it’s all coming in handy in ways I never anticipated it would in this PhD program. I haven’t been working on much in the way of fiction, but I have published three peer-reviewed, first-authored scientific papers in the last couple of months, which is phenomenal for me personally and a pretty darn good place to be starting off with a doctorate (and I’m still two years out from that, at least). I have no intentions of backing off on that productivity now, so there’s a solid chance I could have 6+ publications by the time my dissertation comes off the presses, which is a very big deal in my field, as you can do all the science in the world and nobody benefits from it if you can’t put it out there for others to read.

I’m also leading a writing group for my fellow PhD students at the College of Nursing, with the intent to make writing a little less challenging and scary to folks who haven’t had the benefits of a decade of writing fiction and seriously working on writing improvement in general.

On Health

After my last post, I managed to go through a knee surgery, develop an allergy to chicken (seriously, who does that?), and develop the “challenging” form of Hashimoto’s thyroiditis, an autoimmune condition similar to Type I or juvenile diabetes only instead of my FUBAR system attacking my pancreas, it’s going after my thyroid. Usually Hashimoto’s just requires a lifetime prescription of a hormone replacement tablet and late breakfasts, but my form is special because my levels like to alternate between being too low and being OMG TOO HIGH! High is bad. High really, really sucks. This summer, my blood pressure was running in stroke range and everything we did to try to bring it down brought back my tachycardia. I had all of this anxiety that my POTS was going to flare up again and I’d be back to lying flat all day and not having the mental capacity to read two paragraphs without forgetting the content of the first one. I’m pretty sure I wasn’t pleasant to be around for a few weeks there, but I have the best family in the world and they got me through it.

On Family

Speaking of family, my kiddo is now 6’3″ tall and has started looking scruffy after a couple of days without a razor. So freaking weird to remember him as a 7lb squirt in swaddling. He’s been a challenge to my husband and I on both personal and parental levels for a while now, but things are getting better. We’re dealing with some health issues he has head-on and trying our best to set him up with all the tools and opportunities for success. My husband is as seriously awesome as he’s ever been. I try not to talk about him too much with the ladies I go to school with though, because he really is perfect (for me) and typical relationships can get kind of touchy when one person is spending 60-80 hours a week doing something like pursuing a PhD. It gets uncomfortable to talk about how wonderfully supportive your spouse is when other people have less pleasant experiences. If I had to list my two best assets for success in this PhD journey, they would be Aaron and writing skill, in that order.

The results are a little more mixed with my extended family, however. Most of them try really hard to be supportive and I can see that, but I also hear constantly how “easy” school is for me (it’s not) and how my accomplishments that were very hard earned were never in doubt – of course I’d get full funding for 3 years from the NIH to do the work that I want to do, of course I’ll get the grant I’m applying for despite the current restrictions on funding, of course I’ll pass my comprehensive exams even if I end up having to plan a spontaneous family reunion, attend a funeral, and return page proofs to demanding editors while I’m trying to study. They mean well and I know it and I deeply appreciate it, but the way they choose to express that support is a real challenge for me sometimes.

On Pets

Let’s see… when last I posted, I think we were down to three dogs and no cats. We recently had an addition of a fourth furball – Rocket, a 3-5 year old chihuahua mix (probably with a small terrier of some sort).

Rocket

The kiddo and his girlfriend found him roaming around in the park, covered in scabs and lumps, mostly skin and bones and more fleas than dog. We got him cleaned up and to the vet, who has now started him on a second course of antibiotics for the serious infections he had. We’re holding off on vaccines until the infections are cleared, and holding off on neutering and the other two surgeries he’ll need for a couple of months after that because he’s currently not in good enough shape to survive. His skin has healed up, though, and his fur is started to look a little less mangy. He’s even put on a smidgen of weight, though he still looks pretty skeletal. We also did due diligence to find his previous people. No one seems to be looking for him, and it wasn’t as if he was hiding in the park – he came right up to the kids. A week after his finding, he was introduced to our current four-leggers and they’re getting along like family already. Tennant especially is adorable about it, because every morning when we get up, he has to run straight away to Rocket’s crate to make sure he’s still there.

Ok. Time’s a ticking and I have a lot to do today (surprise, surprise). Like I said, I’m hoping to get more time to work on this blog and on the one I mentioned lo those many moons ago for dissemination of science, though I’m considering shifting the focus of that one a bit to deal more with how to write and read science rather than putting the science itself on the center stage. Scientific literacy in our country is so much less than it should be in a society of people who supposedly govern themselves.

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Conversational Blogging for Professionals

In a fit of nostalgia for ye olde Muse Medicine, and because I clearly don’t have enough to do with my time, despite the 90 hours a week I put into this PhD program and the family who likes to see me occasionally *cough*… well, mostly out of nostalgia, I have been considering writing a blog on the science I’m doing. My first thought was to put it here, but there is something to be said for keeping one’s personal life and one’s professional life in separate silos.

That, and I haven’t given up on writing (or life, clearly). Being honest with myself, however, means facing up to the fact that I haven’t really got the time to pursue a writing career right now, any more than I have to time to work as a bedside nurse. Editors and agents and fans deserve more than 5% of my time commitment, and until I can raise that number a good bit, I won’t be submitting Hunters or anything else. I have kept my feet in the writerly waters, however, and don’t intend to give it up for good anytime soon. Keeping The Write Life here, even if it gets a little dusty from time to time seems to be the right decision.

So, a new blog. Before I go live with it, I’m going to backlog a bit of content, get a feel for the styles of posts I am interested enough to write, and get some feedback from people I know and trust on the tone, the pacing, and the utility of the information. There will probably (but not certainly) be fewer naughty words over there. There might even be multiple authors, if I can get a few of my colleagues on board as contributors or guest bloggers. Chances are very good there will even be occasional “answer an author” posts in the style of Muse Medicine, for those of you who long for a return of the good old days. I’m even considering a marketing strategy, because nothing is less fun than working hard to produce content that is important, meaningful, and powerful, only to have it sit in a void of attention. Tips and tricks for all of those things are more than welcome, as are suggestions for topics, tone, moderation strategies, graphic design, etc.. The more the merrier.

Posted in In the News, MuseMed, Nursing | 1 Comment