Ok, I'm going to start this off by saying sorry for being MIA the past few weeks. I've been hyper focused on rehab, as well as things on the writing front, so most of my energy has been going toward those and everything else has basically fallen a) out of my head or 2) off my radar.
As it is, I am sick this week and all hopped up on DayQuil, so there is no certainty this post will be any form of informative but—hey!—it's not like that's stopped me before amIright?!
I think I left last blog saying we were going to try me with some walking to change things up and see how I did because I was progressing surprisingly well; my symptoms have been extremely consistent over the course of the 9 weeks so my PT felt hopeful about it. And, it was a little rough, but I have been able to transition to most, if not all, rehab on the treadmill. Times have changed and shortened from what they were on the recumbent bike, of course. But it is nice to be up and moving. Typically, the program has the patient go from recumbent bike (or swimming, or rowing) to stationary bike, to walking. My PT feel that because I put myself through some intense exercise 5 years ago (*NOT* recommended, by the way), I was able to help with some of my reconditioning, which has allowed me to respond so positively to this program.
Most of the people within the POTS group at the center have had the condition for a few years. I seem to be the "veteran" of the group at being officially diagnosed in 2007. Everyone moves at their own speed and what their bodies can handle; a girl who was in the program before I got there is still kicking ass on the recumbent bike. I wondered if my having the condition longer was attributable to my response to the program, but my PT said it's usually the opposite. Usually the longer one has it, the more deconditioned they become. But she went on to say how there is really no "step-by-step" way with POTS; it's such an individual condition that affects everyone so differently. Which is one of the reasons it makes it such a pain in fricking the ass to treat (I might've said that last part).
I guess I have been worried to share my progress because I do not want to imply this will happen to everyone. Nor do I want anyone to compare their progression with mine, just a I try not to compare my progression with anyone else's (there are POTS patients running marathons! I think they might secretly be sorcerers). I think it's probably a very human thing to do, though—I mean, I'm proud of where I am but there's also that part of me that's like, "Wow. How did they get to running... a mile... and then... 26 of them... in a ROW?!"
But maybe that's the thing right there, we just have to make sure we're still proud of where we are. Whether it's trying to sit up in bed without passing out, taking a shower without getting the crap kicked out of us for the next five days, recumbent biking for 3 minutes, not puking for 24 hours, walk-crawling, or running for just 10 more seconds because—shit—we sure as hell have fought to get wherever we are, that's for damn sure.
Anyhoo, I've taken a few days off of rehab due to my cold and, since I can decondition like a MF, that means I'll be in a different spot when I'm able get back on the horse. I'll let y'all know how that goes as this has been something I've been worried about ever since I start the program. Either way, I'll have more knowledge of what to do next time the universe thinks it's funny to give me a cold, and my period, on top of a myriad of chronic illnesses.
In the meantime, y'all kick ass and are some of the strongest people I know. Love, S
Now, don't you worry! This post doesn't include any swearwords or minor break downs (like my last one). In fact, things have been plugging along and yielding some interesting observations. I even have GRAPHS, people! Things are getting real up in here!
So, I can't believe it's the end of my 5th week doing Levine's Program already. This week was probably the most fatigued I've been so far, so I wonder if that means we're really starting push against the "ceiling" my PT told me about (I wrote about it here). Which would be exciting, as that would hopefully mean possible improvements as far as symptoms/fatigue/etc. goes. But we'll just have to wait and see.
However, there have been a few other potentially hopeful things I've noticed this week:
- It feels like I have to work a little bit harder to keep my heart-rate up. It is still high, especially compared to typical people who would be doing the same exercise. But comparing Week I to now, it feels like it is requiring a bit more exertion to get it in the zones I aim for when I exercise. So, that's exciting! Especially since, you know, I scratch my nose and my heart-rate shoots up into the freaking stratosphere.
- The past couple times I have been at the center, my heart-rate has returned to what it was before I started exercising. So, when I first come in, they take my baseline HR, blood pressure, and pain levels. As I workout, they take them again at certain intervals, and again when I have finished exercising and have rested for 5 minutes. A typical or "healthy" heart will drop down to a resting heart-rate fairly rapidly once exercising has ceased. (Athletes can determine often determine their fitness levels by watching how quickly their heart "recovers" after a workout... the body can be pretty neat sometimes.) Anyway, an article from Scientific American explains it better: "After exercising, a person's heart needs time to recover, or to return to its normal, resting heart rate. How long it takes for the heart to resume its resting rate is referred to as heart-rate recovery time. In general, people who exercise regularly, and therefore are more likely to have healthier hearts, have faster heart-rate recovery times than people who do not regularly exercise. So after a 100-meter dash an Olympic sprinter would return to a resting heart rate faster than someone who rarely ever runs."(1)
- Lastly, did I mention I have graphs? Because I have GRAPHS! So, while they use a pulse ox, I use my own heart-rate monitor for each rehab session just for my own purposes (and to check my HR throughout the exercise to make sure I'm staying in the right zone). Below, I've posted two graphs that were taken, very nearly, one month apart. Take a look at the appearance of each.
In each graph, my max heart-rate was about the same, but the consistency of my heart-rate is what caught my eye. In February, there were highs and dips all over the place, especially when I was getting into my Base Pace (the yellow). However, the more recent one from March, my heart-rate stayed pretty consistent regardless of whether I was doing my Recovery Pace or my Base Pace.
So, while it's hard to determine if I'm feeling much different physically/symptom wise, it's nice that things are potentially improving on a "mechanical" level.
Back to the center this Wednesday. Since my symptoms have been pretty consistent and minimal, they might try me walking for a little bit just to see how my body and heart react. Though the recumbent bike is helpful, and especially nice on the more POTSie days, I'm excited to see if I can start adding in other exercises to help break things up a bit.
- "Cardiovascular System Science: Investigate Heart-Rate Recovery Time." Scientific American, Bring Science Home. 13 Feb 2014. Web. 5 March 2017. https://www.scientificamerican.com/article/cardiovascular-system-science-investigate-heart-rate-recovery-time1/
With the recent political focus on transgender rights, as well as it being National Eating Disorders Awareness Week, I thought it important to highlight that past research has indicated transgender people may have a higher risk of eating disorders than any of their peers.
In 2015, the Journal of Adolescent Health, determined that “rates of past-year [self-reported eating disorder] diagnosis and past-month use of diet pills and vomiting or laxatives were highest among transgender students.”(1) More specifically, “[a]bout 16 percent of trans respondents reported that they had been diagnosed with an eating disorder in the past year.” That’s five times more than the next highest group which was “men who were unsure of their sexuality, who reported rates at 3.66 percent.”(2)
This is an alarming study in and of itself, but there are two things that have really stuck with me since. Firstly, the study was done via a survey of 289,024 students across some 200 university campuses. So while this is just a small sample size, one must also take into account that there may have been even more students than reported who a) were, in fact, struggling with an eating disorder but hadn’t been “diagnosed” and/or b) did not want to divulge that he/she/they had been diagnosed.
The second is that this survey was done two years ago. Rendering such an alarming result I would have hoped other studies would have popped up in my research, but any article I found only referred to the aforementioned survey in the Journal of Adolescent Health. I could not find any other study. And with eating disorders at such a high occurrence rate ("The National Association of Anorexia Nervosa and Associated Disorders states that approximately eight million people in the U.S. have anorexia nervosa, bulimia, and related eating disorders."(3)), more research is absolutely vital in understanding these mental illnesses (yes, eating disorders are a mental illness), especially within the transgender community.
Now, I am cisgender, so I cannot—and will not—speak to this personally. I do feel, however, that every single person’s story and his/her/their experience with an eating disorder is vital for so many reasons. One being a stark indication of how much more attention and research must be given to eating disorders and, two, the more voices we have, the more people can start to understand that eating disorders affect everyone regardless of their race, gender, sexual orientation, body size, age, etc.
Now, a number of articles I read surmised possible reasons transgender people struggle with eating disorders. I’m not going to do that because I, of course, don’t know. And, also, because I do know—first hand—how individualistic eating disorders actually are. The reason(s) for one transgender person who struggles can be completely different from another, and it is not ‘always’ or ‘automatically’ related to being trans.
Dan Maldonaldo, who works at T-FFED (Trans Folx Fighting Eating Disorders), cautioned against lumping trans folx into these growing ‘theories’, “I think when we report eating disorders in our community to medical professionals, a lot of times there's this arrogance or conflation of gender dysphoria with body dysmorphia." Dan says. "People think that once you're able to transition that your eating disorder will disappear. This is not the case. There's a lot of reasons why eating disorders are prevalent in the transgender community, but it doesn't necessarily have to do with the fact that we are trans and we have bodily issues that have to do with our gender."(4)
In short, this is an extremely important topic which must be explored and researched further. And, specifically, one to which we all need to listen. Eating disorders affect everyone in so many different ways and for so many different reasons, we need to give everyone's story a place in which it can be told.
Eating While Transgender by Jamey Hampton
(My blog is, by no means, a hotbed of internet traffic, but if you would like to add your voice/story to this, please don’t hesitate to email me. Additionally, I encourage you to check out Trans Folx Fighting Eating Disorders for further resources, information, and support.)
- "Gender Identity, Sexual Orientation, and Eating-Related Pathology in a National Sample of College Students". Diemer, Elizabeth W. et al. Journal of Adolescent Health, Volume 57, Issue 2, 144 - 149.
- Ford, Zack. “Eating Disorders Significantly More Prevalent Among Transgender People, Study Finds”. ThinkProgress, ThinkProgress. 4 Aug 2015. Web. 28 Feb 2016.
- "Statistics: How Many People Have Eating Disorders?" ANRED, 2 Mar 2016. https://www.anred.com/stats.html
- McNeilly, Claudia. “Trans Youth Are Significantly More Likely to Have an Eating Disorder”. Health, Broadly. 1 Dec 2015. Web. 28 Feb 2016.
For the most part, I've been surprisingly able to scrape together enough motivation for rehab days. I think a lot of this is because they have made sure I don't go overboard, run myself into the ground, and get my ass kicked by the mind-fing fatigue. But man, today? Today I am cranky. Weather is all wonky, my period just ended, I'm tired, have had no focus in order to write or do anything creatively productive. And all I can think about is how MUCH TIME it takes me to do EVERYTHING. How I want to speed up but I can't—at least, not without fantastical bodily repercussions. I can't write this damn book any faster even though it's been years; I can't pedalpedalpedal through this program any quicker to the end of it/possible new quality of life; I can't take my sweet, darling dog on all the long walks she deserves and has missed out on over the last 10 years of this crap.
But it's not like I can slow down, either. Because that would just add to all the time it takes to do everything. Because then I would just be sitting still. Wouldn't I?
I try to take things as they come. To understand limitations and the reality of my situation. That things will happen when they will. And I'm usually pretty OK at keeping this viewpoint at the forefront. I have to be or else the stress and worry and emotional turmoil of it all would just exacerbate my body and nervous system and I'd wind up even farther back in my progress. But goddamn, is it frustrating.
So while changing my expectations and not perseverating on things has been a HUGE component of getting my health where it currently is, I have been flop-moping around the house all. freaking. day. Protesting and procrastinating on today's rehab like a champ because if there's one thing I can do other than throw silent, pissy tantrums, it's procrastinating.
But, the thing is, I know I'm gonna do it. Hell, I'm looking for my workout pants right now as I complain. Because what other option is there? Sure, if I couldn't physically do it today, that's one thing. But my pain is currently manageable. My fatigue, although present and accounted for, is no where near the shitbucket levels I've had in the past. So, really, what other option is there? I've already tried all the other stuff. I've tried not working out, not hydrating, not doing the bajillion other things I need to do daily. And I know where it gets me. So yes, while everything takes far too long and days (like today) I feel absolutelyfuckingcertain I will never accomplish any of my dreams, it's still happening right? I'm writing intermittently but I'm writingish. I miss soccer something fierce, but I'm exercising three days a week. Granted, it's low-level intensity compared to my full-on athlete days but, I mean, the last time I did any form of exercise three times a week was more than a decade ago. And Niyabear still isn't getting all the walks she deserves, but god am I trying.
And yet some days I can't help but think how nice it'd be it were, just, more. If #RareDiseaseDay was just the ONE day—where we can post all these infographics and things about POTS and then forget about it the next day like everybody else. But no, #RareDiseaseDay is every single day. And shit, I am still doing it. I have been doing it. And I will do it again today—not with a smile on my face or ounce of hope in my chest, but fuck it if I'm going to give up now. If I'm going to give up ever. There is too much I want to do. Too many walks I want to take with my puppy and too many things I want to see and and too much life I want to live. So if my choices are it all taking years upon sodamnmany years vs. never getting any of my dreams at all, then you can find me and my cranky ass pedalingpedalingpedaling away on this stupid, infuriating, and ironically-stationary, bike. Because, even though I may not be going as quickly as I would like, I'm still going.