Levine's POTS Exercise Program: Weeks 2, 3, & 4ish

So, I wrote about Week 1 a bit ago here and have one more day left in Week 4. I'm at 37 minutes of continuous exercise (with intervals) on the recumbent bike and am still managing OK as far as I can tell. Again, like I mentioned in the first week, I'm still tired the day after, but nothing nearly as much as I expected.

In fact, the biggest thing I've noticed is that I'm doing a little bit more here and there around the house. Whether it's because of the exercise is, of course, hard to determine. But there have been a couple of days where I have been able to do two or three more chores than I normally would be able to. Which, if you have a chronic illness, you know is like... HUGE. Like, I put the dishes away the SAME DAY I made dinner?! WTF is this alternate universe?!

So, I am tentatively hopeful. I am not expecting a cure-all, like I have mentioned before. And I am still fatigued, as well as other POTS symptoms. But I guess I have reason to hope. Or, at least, an avenue to hope—so I reckon I'll take that when I can, yeah? 

Couple things before I forget: they are having me practice static standing in order to see if the exercise is helping. So seeing how long I can stand (next to a bed, of course) before symptoms occur and without shifting my weight/feet. (I'm not suggesting you start doing this!!! It was/is just an interesting thing to me.) POTS man. I had someone else try static standing and I said, "How long do you think you can stand like this?!" and they were like, "Um... a while."

A normal response to standing is such a foreign concept to me sometimes. The fact that they just STOOD there for a while was, like, frigging witchcraft to me.

The second thing, that I think is super exciting! I have learned that the soleus muscle in the leg helps with blood flow!  So, on the days I do weights, they are having me do soleus strengthening exercises which—guess WHAT!?—can be done sitting!

Picture of what I'm doing to strengthen my soleus that I borrowed from Runner's World.

Picture of what I'm doing to strengthen my soleus that I borrowed from Runner's World.

As it is with the cardio side, they are keeping my core/leg weight training reps on the low end to make sure I don't overdo it. (Please check with your doctor before you do anything you read here, or anywhere else. POTS is so different for every person and what can be helpful for one can be detrimental for another).

Anyway, I'm tired, so hopefully all of that is, at the very least, somewhat coherent. As I explained in my initial post, I can't give away specific details of the program, but I will try to share information as best I can. I truly hope these are helpful.

In the meantime, take care and heads-up when you can. I was bed-bound for two years, sleeping 20 hours a day, and I never thought I would ever get this far. <3

 

Levine's POTS Exercise Program: Week 1

I'm about to start my 3rd week on the exercise protocol, and I figured I should probably write about the first week before I forget it. I mean, I took some notes but there's only so much that can be done against the brainfog! So, let us see if I can take some words and piece them together somewhat coherently, shall we? (By the way, you can read about my intake and intent for this blog series here.)

The first week was hard for me in a way I wasn't expecting, honestly. I had been waiting so long to get into the program (let alone waiting to ACTIVELY do something that might make me feel better) that I wanted to hit the ground running, basically. (Or, hit the ground recumbent biking..... see what I did there?! Haha! ... ha......) 

RIGHT so, over the past 10 years of this disorder, I've learned a lot about my limitations. And a loooooot about myself in relation to how I feel about limitations. In short, if I kept going how I was before (and for a few years after I got sick) I was never going to get better. I did not listen to my body, did not respect my limitations and see them for the good things they can actually be. However, over the years, I have gotten better at this, and have found a medium where I still push a little bit, but not enough to over do it. And it's where I've been operating for a while. 

However, Week 1... the PTs didn't want me doing even that much pushing. They explained it like this (which I found helpful): if my POTS is a ceiling, what we/I/they want to do is to push up against the ceiling over and over, until the ceiling moves a little bit. Then rinse and repeat. They do not want to "punch through" it because that only sets us back, increases the time spent in recovery, and does more damage than good. 

So, basically, the first week was a lot of me getting used to this. I had stopped "punching through" the ceiling a long time ago, but I was still (continuing with the metaphor) taking chunks out of it now and again. I needed to slow down even more. Which has been tough for me--I'm presented with something that could increase my quality of life and I. WANT. TO. GET. BETTER. NOW. But I can understand WHY I need to take my time. And if I'm going to put myself through this program, I might as well do it the way they have seen it work. 

Anyway, the first week was mainly them checking my heart-rate and blood pressure throughout 20ish minutes of intervals on the recumbent bike. This, obviously, was to keep an eye on how my body was responding. But also checking in on my symptoms, how frequently they were occurring, how intense, etc. Basically finding out where on the protocol I should start so that my body was being pushed, but not pushed too far.

I was still a bit tired throughout the week, but not as tired as I was expecting (again, as I've been used to the taking out chunks in the ceiling). I was expecting being bed-bound, honestly, but that's because that's how I had done things in the past. But was happily surprised that I was still able to do mostly what I had been able prior to starting, save for an extra nap here and there, some more fibromyalgia pain, etc..... I guess it's all relative, huh. :) 

Another thing I took away from Week 1 is my PT (who is awesome) was saying how POTS, for a lot of people, is both a cardiac issue and a neurological issue. So while we're working on the cardiac side of it with the program, the neurological side is habitual. Needing repetition and time to sort of figure out the right way to work. POTS is vast and varies from person to person, but it makes sense to me and I will have to read up on this concept when I have some more time and energy. (Or, if anyone has good articles/research, please send them my way if you can!)

Lastly, and the weirdest thing—it's strange being around people who actually know shit about POTS. Usually I'm the one explaining it, but there have been instances where the PTs have told me things I wasn't aware of. Plus, there's just an all-around feeling of someone "knowing about it". It's really weird and surreal, but nice. In the same vein, we've also been bouncing our knowledge off each other. Mine as my experience first hand and them as they continue to work with POTS patients. 

Anyway, there are other things to talk about, but those are the main ones I took away from the first week. I'm neither hopeful nor cynical at this point, I guess. I'm just doing. One step in front of the other, one day at a time. I guess that's all we really can do regardless of where we our in battle against POTS, yeah? :)

Hugs,
s.e.c

Levine's POTS Exercise Program: Thoughts and Intake

A few years ago, I put myself through a summer of exercise, keeping an eye on my heartrate, and felt it was a big proponent in getting me from being bedbound to being able to hold a full-time job. As it always is with POTS, my health has fluctuated since, and—recently—my doctor suggested I try the POTS Exercise Program created by Dr. Levine.

For about four months now, I’ve been working with my doctor to get my medications balanced in order to try the program, but only recently have I thought of blogging about my experience. I know exercise is not a “cure-all” for POTS, and it may not work for me just as I have heard it has not worked for other people, so I can't promise what the content will be like. Especially since I would not be divulging specifics of the program per the request of Dr. Levine who “strongly [feels] that each patient undergoing an exercise program needs to be monitored by their health care provider regularly.” Which I found myself agreeing with more than I thought I would.

Now, if I were you, I'd be frustrated at a blog chronicling this and not giving details. When you have an illness like POTS, you want any specifics you can find.  You want concrete steps in order to DO, to TRY anything to get better. I understand this completely. So I will do my best to give as much information as I can, without going into the details—I really don’t want anyone  making an already complicated illness worse by utilizing this program on their own, especially with how extensive it appears to be., without guidance of a professional. Now, I also get the general wariness of doctors, too; I don’t have a lot of faith in doctors regarding POTS, but I do feel things are gradually changing over the years and more good doctors are stepping out. So I will provide a list I’ve put together of these doctors*, as well as provide information** for you and your doctor to get in touch with Dr. Levine so that you may look into the program together.

That said, I’m now at the “So why the hell would anybody read this crap then?” and, honestly, I don't know. But today came, the day after I went to the Center for the intake/stress test, and I’m already dsfjhksjer than I expected, and then the emotional and mental mind-fudgery started: Uh, I barely did anything yesterday and I feel like this? Are you %*#&ing kidding me? I’m totally screwed when I start Monday.

So, alas, here I am: writing a blog in Grinch pajamas (appropriate), completely exhausted after making myself a lunch, and—thanks to brainfog—unable to remember what frigging day of the week it is. (Thursday I think?) My friend told me that these experiences, thoughts, emotions, and frustrations might be beneficial for others to read. Whether that will be the case, or it will just be a place for me to vent, is yet to be seen. However, I *can* promise these series of blogs will probably be laden with f-bombs, various other bits of salty language, and stupid things I find funny to keep me from a breakdown. So, you have been forewarned, dear three readers of mine!

As I mentioned, I went to the intake yesterday and it was pretty straightforward. We went through the schpeal of how my symptoms present themselves, I told them what makes them worse (“Uh, pretty much everything we’re about to be doing.”), and they told me what to expect. They took my heart-rate, blood pressure, and pulse ox while sitting, standing, and standing after a few minutes and then I got on the recumbent bike. They had a paper with a scale for me to look at, something like 1 – 10, with 1-3 in blue (not much exertion required, could do this extensively), 4-5 in green (beginning to be challenged, but still able to continue, breathing normally, little to no symptoms), 6-7 yellow (audible breathing, still able to complete sentences, other symptoms occurring), 8-9 orange (can only speak one to two word responses, symptoms present, and 10 red (cannot continue want to curl into a ball now please thanks).

My PT would increase the resistance of the recumbent bike every couple minutes, instruct me to keep the RPMs at a certain number, and then ask me how I was feeling (using the scale if I needed to) while she took my blood pressure and heart-rate. This rinsed and repeated until I got to the orange when my wee little legs were basically just like “We revolt. We want back into our pajamas.”

The PT told me she would go over my vitals, and her observations from the recumbent bike, to come up with a good pace and heart-rate zone area that would allow me to strengthen and condition without going into the red exertion level.

Honestly, it wasn’t too horrible of an experience. Definitely fatiguing, of course, and daunting for sure, but it was nice to be able to take some concrete steps. Of actually talking to someone who was familiar with the condition. And to know that other people have gone through this in order to better themselves and their health. I didn’t realize I would feel this odd form of “camaraderie” with POTS warriors, and other people trying to improve their health (cardiac patients, CF, etc.) at the center, by just getting out and doing the intake. So while a lot of these blogs will probably be for me and my venting, I do hope it can be helpful to others—regardless of whether they complete the program or not.

Sarah

*List of Recommended Doctors

**“Any healthcare provider around the world can contact Dr. Levine’s team in Dallas for this [program’s] information to use at their discretion with their own patients.”

Dr. Benjamin Levine and Team
Dianne Hendrickson, FNP-C
Tiffany Bivens, M.S.
Institue for Exercise and Environmental Medicine
7232 Greenville Avenue, Suite 435
Dallas, TX 75231
www.ieemphd.org
THRIEEMPOTSRegistry@texashealth.org

Honesty 2016

At the beginning of this year, I skipped the typical resolutions and, instead, decided to choose a word I wanted to live by for 2016.

I wound up on "honesty"a supremely challenging word for me but which, as I look back on now, was far more beneficial than I could have imagined.  

I learned many things along the way, but the most poignant was how being honest forced me to live and be an honest version of myself.  This, of course, is not to say I have been lying about who I am. Rather that (as I think everybody tends to do to some extent) I edit bits and parts of myself depending upon to whom I speak.  

But I stopped doing that in a number of big ways this year, and while it was terrifying and difficult, the results I encountered have been something I've been reflecting on for some time.

It started just being more honest about "little" things: if I had to back out of a planned outing, saying it was due to my chronic illness or not feeling well, instead of covering up for it in some way or another. I worked on being more open with people close to me, trying to express a little bit more of my thoughts and my self than I normally would. I no longer said "I'm fine" if I wasn't, worked very hard not to say "That's okay" if it isn't, and generally tried to be more forthcoming.

As this progressed, and I grew more familiar with living more honestly, I realized it was about far more than being honest for/to other people. I had thought being honest would only be a pathway for people to get to know be better, understand more things. And while it most certainly was, the biggest thing I took away from it was the freedom it gave to myself. Being open and vulnerable showed me exactly how "comfortably" I had lived for so longwhich isn't a bad thing. It is self-survival and protection, an absolutely necessary for all people and me during that time. Before this year, I did not have the skills and the growth and the support which allowed me to jump into all of this; I have been working toward this for years. 

I thought, by the end of the year, maybe I'd be less afraid of being vulnerable and have a desire to be more honest with people. This might be true to some degree; I want to continue trying to be honest and it is still more terrifying than not. But what I never expected was to be more OK with me. Yes, most people accepted me and it feels AMAZING and, yes, some didn't really and that hurts--but, regardless of these outcomes, I had begun to live a truer version of myself. And, in doing so, I have found more peace within myselfwith who I amthan I could have ever expected. 

It's like it removed the question of it all. Can I still be loved if I am still me? If I say what I think and feel? And this is the answer: yes. And, also: no. Other peoples' love and acceptance has given me so much, but there are some who have had trouble accepting who I've become and what I believe. But now I don't have to be curious about them anymore, I don't have to wonder. It feels backwards but living honestly has helped me to  see how sad it ishow it is about them and not me. I has made me less afraid of myself and more capable of telling them I am proud of who I have become.

This little word has set me free in many ways, many of which I had absolutely no idea how, or to the extent, it could. But credit does also go to those who have not only let me speak, but also heard me. Who have understood my fear. Who saw my vulnerability under comments/texts/words that  most people would not realize were so fragile and connected to me, and met them with caring hands. It's because of your love, which continues to helps teach me to love myself, that I have the courage to keep living an honest life long past 2016.

#Booknits: THE GIRL BEFORE

Many moons ago, my fantabulous friend, Rena Olsen, wrote a book. A really good book. So good that you've probably heard of it at some point or another and, if you haven't, then this is me making you hear about it and suggesting you go read it. 

&nbsp; This book! THE GIRL BEFORE!

  This book! THE GIRL BEFORE!

I'm going to take a brief moment and say that I'm lucky enough to know a lot of really cool people. Many of which happen to be really cool authors. All of them hardworking, generous, brilliant, and kind—and Rena fits all those descriptors and then some. 

When her book came out, I wanted to celebrate with her somehow. But being  miles away made that a bit difficult (at least in the traditional sense). So, instead, I knitted her a gift. If I couldn't be there in person to tell her how proud and excited and thrilled I was for her, then maybe every time she saw the Ruffled Scarf I made, that could be the next best thing!

I have to add, I'm so proud of the yarn I was stubborn enough to find. It's difficult to see here, but it's black with flicks of red in it and matches her book cover!

I have to add, I'm so proud of the yarn I was stubborn enough to find. It's difficult to see here, but it's black with flicks of red in it and matches her book cover!

Luckily I got the scarf sent to her in time for her book release which I, sadly, can't say about this blog post. But I digress:

THE GIRL BEFORE is a truly unique book, written in the alternating timelines of "Then" and "Now". It follows Claraa woman abruptly taken from her home, husband, and daughtersand is forced to confront the possibility that her life might actually be part of something far more sinister than she realized. 

Aside from the great storytelling (which Rena is amaaaazing at. Trust me, I've been lucky enough to read a number of her drafts and short stories), THE GIRL BEFORE also deals with the important (and difficult) topics of human trafficking, abuse, and trauma. However, as a psychologist (and just an all-around compassionate person) Rena tackles these issues with equal honesty and regard. Balancing the need to give these topics the candor they need and "deserve", while also respecting them as a storyteller. 

I know there are many other summaries that can better explain THE GIRL BEFORE's synopsis. However, I want to impress how it is not only a great book, but also an important read in compassion, gleaning the complexities of abuse, and shining light on the real, present threat of human trafficking. 

Simply, it is a unique, poignant story crafted by an exceptionally kind and generous person. 

The aforementioned awesome author with the aforementioned ruffle scarf.

The aforementioned awesome author with the aforementioned ruffle scarf.

Be proud of yourself, my friend. <3

- Sarah

If you, or anyone you know, may be suffering from any of the aforementioned issues, please click on the links provided, as well as consider how therapy may help. 

National Human Trafficking Resource Center
1 (888) 373-7888
SMS: 233733 (Text "HELP" or "INFO")

The National Domestic Violence Hotline
1 (800) 799-7233 (SAFE)
For the deaf and hard of hearing: 1 (800) 787-3224 (TTY)

Lots of people take pictures of themselves in the kitchen with good books, right?

Lots of people take pictures of themselves in the kitchen with good books, right?