Levine's POTS Exercise Program: April 2017

Hi there!  I have a number of things to catch everyone up on and possibly not enough brain capacity to do it so *stretches fingers* here goes!

Last I blogged was in early April (hahaha... remember when I said I'd try to blog at the end of each week? That was a good one, right?!) and was coming down with a cold. As suspected, my conditioning changed a bit while I was on bed-rest and my body spent its energy on getting better. Luckily it didn't knock me out of commission for too long (I believe I missed only two days of rehab) and it only bumped me back a few days on my progress, which was pretty exciting. I made sure to take it very easy my first day back and not to push it, as it was difficult to gauge when I felt well enough to resume again vs trying not to hop back into it too quickly. I'm happy to say that it took me a week or so to get back to where I was prior to getting sick, which was far quicker than I expected.

Later in April something remarkable happened... I did a huge crap-ton of things in 5 days and I didn't turn into mush! The setting: me in my fantastical, wonderful, amazing, beautiful cousin's wedding which was close enough for me to drive to. The plot-twist: work blew up beforehand and a lot of the prep work fell onto me. The result: (are you ready for this jelly?!) Wednesday I ran errands for about 5 hours or so...Thursday was spent cleaning the house, packing, etc. etc., literally an all day kind of deal. Naps were included obviously, but relatively short ones...Friday drove 7 hours, hit the ground running for rehearsal and the rehearsal dinner, got to bed late after visiting with family...Saturday was the big day! Hair-did, travel to the wedding venue, hustling around to help the bride, getting dressed, going off to take pictures. Ah! I almost forgot! I had to run half a mile in flip-flops to get my cousin Peptobismal. TRUE. STORY. (And yyyeeeah, sorry to share this with the world, Trish. Loveyoumeanit!). Anyhoo, back for more photos, lovely wedding walking and standing and happy tears, food, dancing, maybe a glass or two of alcohol (I'm not at liberty to say) before staying up late talking to my brothers and then—boom—Sunday, which included waking up early for family brunch, then driving 7 hours back home AND I DIDN'T DIE.

Seriously, how the hell was ANY of that possible?

Now, I was pretty pooped the Monday getting back, and still a little bit on Tuesday. But it wasn't a crash. It felt like... an appropriate response or something. It was WEIRD.

However, I still have trouble attributing this to the program. Like, I keep thinking, "Well, maybe I would've been able to do it months ago anyway!" But I just don't think that is the case, nor do I know why I'm so hesitant to attribute my improved condition to the exercise program. I think I've probably become a skeptic—maybe even a cynic?—about anything related to treating POTS (shocking, I know...) Plus, it's just hard to see potential changes when you're inside of them, especially if they're happening incrementally. Of course, I don't think exercise has been the "cure-all" for me. Not by a flipping long shot. All two of you that read this blog will know there's a lot of stuff I've put into motion to increase my quality of life—things I have found to be just as important as the rehab. But, that said, I have to add that the effort and dedication I have put into this program has, I think, definitely paid off.

Of course, that's the kicker though right? Being able to stick with it? To find that middle road where you're pushing but not too much? To be able to understand your body enough to know if all the struggle is actually benefiting you after a couple of months or not. I know when I put myself through my own "program" 5 years ago (again, don't be stupid like me and do that) I felt like shit but, to a degree, I was able to start feeling myself getting stronger. And maybe that's the good thing about this program. Maybe I haven't been able to feel it as much because I have been doing it more slowly and more responsibly. And then it's like one day I wake up and do crazy superhuman wedding shit for 5 days that would've normally turned me into a little Carson blob on the floor.

So, that's April for you. May brought along a lot of changes as well. More specific data type ones if that's your thing. And, hopefully, it won't take me another two months before I sit down to write about it.

I hope everyone is doing OK, that there is at least some helpful information you are finding in these ramblings. And if there are any questions I will definitely do my best to answer them.

Be well!

Sarah

 

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

#ApproveSudol / #Parity4JP / #Care4K: When Will The Exception Become The Norm?

3/11/16: After seeing marked progress with their daughter at Oliver-Pyatt Facility, the Sudol's were forced to change insurance companies to Blue Shield of California. And, in early January, BlueShield decided 'Jenny's' treatment was no longer "medically necessary" -- even though Oliver-Pyatt sent over 90 pages written by doctors, staff, and caregivers documenting and explaining why and how Jenny is still at an extremely vulnerable position and requires the literal life-saving residential treatment at Oliver-Pyatt. You can read Renee Sudol's letter in full here and support their family with the hashtag #ApproveSudol.

(As of 3/14/16, BlueShield has claimed they have attempted to reach the Sudols by phone, which the Sudols have denied. In other words, BlueShield's actions continue to imply priority for their bottom dollar instead of the life of a 15 year-old girl, not to mention the millions like her who not only have had the courage to seek out treatment, but also fight daily to stay alive.)

4/5/16: After months of ignoring the Sudol's efforts, BlueShield finally got in touch with them only to uphold the previous denial by a BS doctor (who is apparently untrained and not licensed in treating a mental illness as complex as an eating disorder). The Sudols continue to demand proper action (aka, you know, the law (read about The Mental Health Parity and Addiction Equity Act here)), Jenny continues to fight against the deadliest of mental illnesses, and Blueshield continues to put money above the value of a young girl's life.

***Current update 5/5/16:*** BlueShield continues to deny coverage while at least two other families (#Parity4JP and #Care4K) have stepped forward to speak of the insurance company's unwillingness to a) follow the law and b) do the right thing and support their children in treatment for an eating disorder. Instead, these families, friends, and other supporters now have to take to the streets in order to save their childrens' lives.

I'm running out of things to say at this point about how completely and morally despicable this is. There are hundreds of documents from doctors who are actually knowledgeable about, and trained in, eating disorders (can you say that of yours, BlueShield?) supporting the need for these people to receive care. And yet, this picture does well to sum up BlueShield's apathetic and deplorable ways.

However, it also poignantly sums up our own promises:

We. Will. Not. Give. Up.

(Photos borrowed from Twitter: @doreens15)

 

ORIGINAL BLOG POST FROM DECEMBER 26, 2015:

Something awesome happened on the internet just recently; under the hashtag #ApproveSudol, activists drew attention from Aetna, a Fortune 100 company, who had previously denied treatment for a 15 year-old girl fighting an eating disorder). According to @IEDaction, over 34k messages were sent out on Twitter using the hashtag and, after garnering recognition from Aetna's CEO, Sudol was approved for the treatment she needs.

Now, I do not want to take anything away from this -- not from the hundreds of people pulling together for a common cause, not from the bravery and strength of 'Jenny' Sudol, nor the love and dedication of her family. But I feel I must point out that the exact same day I cried with happiness for Jenny and her family I later learned an acquaintance of mine had been denied treatment by her insurance.

In this day and age, I am the kind of person who takes any bit of good she can find and runs with it, but I just couldn't ignore that it took 34,000 messages and (I'm sure) hundreds of other phone calls, letters, etc., in order for get a child to get lifesaving treatment. Especially considering eating disorders have been shown to be the deadliest mental illness(1) – with anorexia having six times the increased risk of death (four times the risk of major depression), bulimia carrying 1.7 deaths per 1000 people, and ENDOS (eating disorder not otherwise specified) carrying 3.3 deaths per 1000(2). In other words, the "mortality rate associated with anorexia nervosa is 12 times higher than the death rate of all causes of death for females 12 - 24 years old"(3). Even with this, one must keep in mind the previous statistics are based only on deaths actually reported as caused by eating disorders; there are far more that say death was only due to heart failure, organ failure, suicide, malnutrition, etc(4), despite these complications having been a direct result of an eating disorder.

Additionally, the risk of death from an eating disorder increases dramatically the longer it takes to be diagnosed and treated later in life. Which is one of many reasons why early intervention and proper treatment is imperative when dealing with eating disorders. Another being they are biopsychosocial illnesses akin to addictions – not a condition done for “attention”, “vanity”, or whatever other misconstrued labels have been applied to them. Just like alcoholism, drug addiction, etc. – eating disorders are multifaceted illnesses that derive from, and attack, many different levels; they need extensive and appropriate treatment to beat and yet, with approximately 11 million Americans suffering from eating disorders, only about one in 10 receive the treatment they need(5).

Needless to say, I could write a novel length rant on insurance companies and their completely messed up views on money vs. people’s well-being, but a number of people have already addressed this (i.e. An Open Letter to Insurance Companies) a lot better, and with fewer expletives, than I ever could. And though I would love it if my thoughts on preventive treatment could single-handedly change the ways of money grubbing insurance companies, we will just have to keep advocating like we have been. Because, as we all know, #ApproveSudol cannot remain the exception -- it must become the norm.

So, while many of us have had our own experiences of seeking treatment and battling insurance companies (a brief description of mine can be found here), I -- like so many others -- ultimately want to stop adding to the list of names who did not receive adequate treatment (like Alana Goldsmith), or proper diagnoses (like Lacey Smarr (article contains weight), or were refused treatment and/or support for its high cost (like Katherine West and Anna Westin). 

Instead, I want to create a new list of those given a chance they so rightfully deserve -- just like Alana, Lacey, Katherine and Anna deserved -- starting with 'Jenny' Sudol.

 

  1. American Journal of Psychiatry, Vol. 152 (7), July 1995, p. 1073-1074, Sullivan, Patrick F.
  2. DeNoon, Daniel J. "Deadliest Phsychiatric Disorder." WebMD. WebMD, 12 July 2011. 23 Dec 2015. www.webmd.com/mental-health/eating-disorders/anorexia-nervosa/news/20110711/deadliest-psychiatric-disorder-anorexia
  3. "Eating Disorder Statistics". South Carolina Department of Mental Health. n.p., n.d. 23 Dec 2015. www.state.sc.us/dmh/anorexia/statistics.htm
  4. "Eating Disorder Statistics". ANAD. n.p., n.d. 23 Dec 2015 www.anad.org/get-information/about-eating-disorders/eating-disorders-statistics
  5. Eldred, Sheila Mulrooney. "Eating Disorder Patients Fight Double Battle: Their Disorder and Insurance Firms." Health. Minnesota Post. 17 Feb 2012. 23 Dec 2015. www.minnpost.com/health/2012/02/eating-disorder-patients-fight-double-battle-their-disorder-and-insurance-firms

 

Helpful Links:

https://www.nationaleatingdisorders.org/get-facts-eating-disorders

http://www.nationaleatingdisorders.org/insurance-resources

http://eatingdisorderscoalition.blogspot.com/2015/06/annaslaw-by-kitty-westin.html

http://thehill.com/blogs/congress-blog/healthcare/247438-why-the-anna-westin-act-of-2015-matters

http://www.wday.com/news/3890325-minn-mother-aims-help-patients-eating-disorders-across-country