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.

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.

Posted in Broken Heart, family, In the News, life, Nursing, School | Leave a comment

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.

Posted in family, In the News, life, Puppies, School, writing | Leave a comment

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

PhDepression

So I went into a PhD program this semester, and through a combination of luck and skill and the kindness of strangers was awarded a fellowship, funded by the NIH, to train as a life course scientist. Basically, they are paying me to be smart and work hard and it’s awesome.

It’s also quite a challenge. I’m taking roughly double the load most graduate schools consider full-time at this level, and driving 85 miles there and back for classes. Another instance of luck and the kindness of strangers has recently found me a place to stay near campus, so that I can drive up the night before and sometimes stay a couple days in a row and knock 3 hours of travel off my week. I feel exceptionally blessed.

I also feel about as stressed as I ever have been in my life, and that says a lot. Right after beginning the program, I started feeling a lot more negative, a lot more listless. Getting anything done (and I am the Queen of Getting Shit Done) became a challenge. People who love me started asking if I was depressed.

SONY DSC

Depression is portrayed in the media as people who sit around, too worn out to get off the couch, with ratty hair and dirty, sad faces. They portray depression as listless weeping or angst or suicide attempts, but it isn’t always those things. Sometimes, it’s a subtle bastard that creeps up on you and sabotages your goals, your self-image, and your every waking thought. Sometimes it’s just a little distortion of the way you see the world, hard to notice.

I didn’t feel depressed, when my husband asked me if I was, but many of the symptoms were there. The negativity, the lack of energy, the absent sex drive, the avoidance of the things I once loved doing… I told myself it was just because I was busy and stressed, but the truth of the matter is, I’ve been busy and stressed through the best times of my life. I thrive on busy and stressed. And this time, I wasn’t thriving.

I was depressed, and not because of the PhD program. I was also cold all the time, and my skin was papery dry. Even my nails turned brittle, and that’s when I realized what the problem was. I went to my doctor and got my thyroid checked. Lo and behold, it was low. I tested positive for the antibodies that signal Hashimoto’s Thyroiditis, an autoimmune disease that attacks the thyroid gland in the same way that the pancreas is destroyed in juvenile diabetes. Now I’m on the replacement therapy and am starting to find my energy and my balance again (well, I was before I came down with the flu last weekend anyway).

Since then, I’ve been asked to prepare two papers for publication in scientific journals, I’ve found some really interesting things from data collected in a research study I’m helping with related to sleep quality in pregnant women and the risk for giving birth too early, and I’ve spent a lot of time reconnecting with my son, who just turned 15 last week. All in all, not a bad haul.

Oh, and I finished the revision cycle on Hunters. It now stands at 120,000 words and I love it. It’s as close as I can get it to perfect, and I want it out the door. Meanwhile, I’ve picked up Red Wolf Mountain again, found a plot, and am working on turning it into a story I can be proud of.

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So what have you guys been up to?

Posted in life, Miscellany, Nursing, writing | Tagged , , , , | 2 Comments

UPDATE: IST and My Not-So-Broken Heart

Over the years since I was first diagnosed with IST, I have received many, many well wishes and kindly comments from folks who have found themselves in the same boat. I’ve also been asked for a lot of advice. I wanted to provide a brief update on my own path with IST and my later additional diagnosis of POTS, and to put my best advice somewhere folks can find it.

A bit of background – IST (Inappropriate Sinus Tachycardia) is just a fast heart rate at inappropriate times. POTS (Postural Orthostatic Tachycardia) is a fast heart rate in response to changes in position – like going from sitting to standing. Generally speaking, POTS is ruled out before a diagnosis of IST is made, but not always. In my case, I continued to have a fast heart rate even when sleeping, so my physician skipping the tilt-table test that detects POTS. Turns out, this was a mistake, as I had both disorders and they were ganging up to make my daily life much more affected than is usual with IST alone.

Once the diagnosis of POTS was made, I was referred to Dr. Grubb, a renowned specialist in POTS treatment at the University of Toledo. Unfortunately, he had a 9 month long waiting list for new patients. Well, being a nurse (and thus, making a terrible patient), I decided to do some digging. I found articles by Dr. Grubb discussing his non-medical management of POTS. I took them to my cardiologist (who had admitted by this point that he was at a loss for how to help me) and together we put a plan in place. I went off all the medications, because I learned that the elevated heart rate is actually an attempt by my body to compensate for a separate issue, so reducing my heart rate without fixing the underlying problem was causing me even more problems with fatigue. It turns out that my body was compensating for a low blood volume by increasing my heart rate and increasing the muscle tension in my arteries, to keep my blood pressure normal.

To fix this, I started doing exercise to strengthen my calves and thighs with a tightly controlled regimen that involved gradually building stamina from a couple of minutes to over an hour of peddling while lying flat on my back to keep my POTS in check, and never letting my heart rate go over 130 while exercising. I also began drinking 3-4L of water a day and eating a VERY high salt diet. Now, as I’m not the sort to put salt on anything, this was actually pretty difficult for me. I was expected to eat 4-11grams of salt a day (which is 2-4 times higher than the average American high-sodium diet). I usually managed 3-4grams, but eventually I started seeing the results of increasing my blood volume.  I also pursued a mindfulness about my body that I had never had before, learning and respecting my body’s limits despite my desire to overdo it. Over time, my heart rate decreased, my exercise tolerance increased, and eventually I was able to return to work as a nurse. It took me over a year to completely recover from the year of disability I suffered before trying out the high-salt diet, exercise, and body-mindfulness management plan I created, and I never got to see Dr. Grubb because the solutions I learned from him in the literature corrected my condition before I ever made it off the wait-list.

Today, I am pursing my PhD in nursing science at The Ohio State University under a National Institutes of Health-sponsored training grant for promising scientists, which would not have remotely been possible if my condition had continued to languish in the land of beta blockers and ablations. With no medication and no ablation, my resting heart rate is in the mid-70′s, and while I still occasionally experience a pounding heart and the rapid rates of old, I am competent at managing the symptoms and the underlying causes.

All that said, PLEASE do not try to copy my success without the advice of a physician. Even though I found my own solution, I stayed in close touch with my cardiologist and did nothing without his agreement. If your cardiologist isn’t willing to listen or shrugs your concerns aside, as several of mine did, find a new doctor. If all else fails, request a referral and get on the list for Dr. Grubb, who really does know his stuff, if his publication record is any indication.

My best advice for you is this: if you have a person in your life who knows how to research the medical and nursing literature for a condition like this, enlist them as your advocate and constant companion in medical situations, if you can. For what it’s worth, the cardiologist who eventually did test me for POTS misinterpreted the test as negative initially, and only my own knowledge of the diagnostic criteria made him reconsider and recognize that I did in fact have the condition, as there are two different forms, and I have the rarer variety.

Finally, I completely understand the desperation that this sort of rare and debilitating condition produces, but please don’t fall prey to “miracle cures.” The methods I utilized were not pseudoscience nonsense involving crystals and magnets and energy fields. They were evidence-based treatments described in medical literature that was produced by a recognized expert in the very narrow field of POTS and IST research. They also required no money other than the purchase of a free-standing exercise peddler ($56 on Amazon).

Posted in Broken Heart | 8 Comments