Up in the Air

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Aruba was amazing. Getting there was awful.

** Disclaimer: This experience is mine and mine alone. The following story is based on true events that may or may not be true of other Potsies. I do not claim to speak for anybody else.**

So let’s recap my posts thus-far. What is POTS? POTS is the body’s inability to regulate changes in blood pressure and pulse due to a malfunction of the autonomic nervous system. What is turbulence on an airplane? Pressure change.

Putting two and two together, what happens when you put a Potsie on a turbulent airplane? Said Potsie does not become nervous on the plane because said Potsie has flown many times before. This being said, the Potsie has not flown since her POTS has come out of its shell, so to speak. So, combining a person with very little ability to regulate pressure in her own body, and significant pressure changes around her, this Potsie’s body will have a VERY difficult time remaining upright.

If you couldn’t tell from my ranting, that Potsie would be me.

I recently went to Aruba with my family and it was a wonderful time! Ask me about it if you want details of the trip! What I want to discuss now, though, are my thoughts on flying with POTS.

I’ve never flown with POTS before, so this was a new adventure.

Flying down to the island was relatively okay. I only blacked out and lost my vision a little bit during takeoff and landing, resulting in me crying twice and struggling to stay conscious. That was a walk in the park compared to the return trip.
IMG_3803I started out the trip by having anxiety issues at the airport. That’s when the POTS started to go downhill. So we got a wheelchair and whizzed through security. Great. We waited at the gate for about four hours, during which time I donned my compression garments. Waist- high tights and full-length sleeves. (Keep in mind, this was Aruba…… hot to begin with, made hotter by my new fashion statement.) We got on the plane, which I was dreading to begin with, after flying down and blacking out on takeoff and landing, and I sat down in my seat. I immediately started crying…. We hadn’t even moved yet.

We took off…. I blacked out again. I was still wearing all of my compression gear, chugging my NormaLyte, and squeezing every muscle of my body, fighting to stay conscious.IMG_3807

We got into the air and the turbulence started. As I stated before, turbulence is a change in air pressure. I’m sorry to burst everyone’s bubble, but those airline cabins are not as pressurized as you might think….. I. Felt. Everything. Every little bump sent me spinning. And chugging. And swelling. And struggling. And crying. And fighting to stay upright.

This went on for the entire flight. I was fighting my body for five hours straight. It was all- out war.

Anyway, all of this is just to say that when flying as a Potsie, you should be prepared to tackle your POTS head-on. I didn’t know what to expect from flying and now I know that I love traveling, but flying is not something I’d like to do very often in the future.

Email me at potsienb@gmail.com and tell me about your travel experiences! I’d love to hear how you all manage while everything is “up in the air!”

Fine thanks, and you?

I had an interesting thought the other day: How and why do you condense your story?

When I tell a stranger or even someone I know about POTS and how it affects me, I always condense the story; I rarely share my entire saga of symptoms to diagnosis to now, or even how I’m doing on a daily basis. But why do I do that? Does everyone do that?

When asked, I normally say that I have a disorder that affects me in the way that whenever I sit up or stand up, my blood pressure drops and my pulse rises, making me nearly pass out. Short and simple, though we all know by now, based on reading my previous posts that there is so much more to POTS than just that.

Shortening the story still gets a basic point across, but does this negate the severity of the issue? In my opinion, yes, it sort of does, but not necessarily in a bad way. If you tell a story of a significant or severe health problem, people will often ignore what you are actually saying to them, in favor of offering to help and starting a conversation about everything you’re doing to try to “get better.” In my experience, people retain more information when the story is down-played, to an extent, so that emotion becomes less involved in the interaction and the person asking can become more informed, rather than more worried.

For example, when asked, “Hi, how are you today?” most people respond, “I’m good, how are you?” — BAM- downplayed. The proper response is not “I feel like I may keel over at any moment,” or “I probably shouldn’t be standing right now, but I’m going to stick it out anyway. How are you?” I downplay so that I don’t start a conversation about how the other person can help or what suggestions they can provide…… How do you politely say “You can’t help me, but I’ll smile and nod because no, eating a banana will not make my foot cramps go away and no, I don’t really want to sit down so please don’t make me?”

I think I downplay selfishly- I often don’t want to talk about it when I’m out at a party or with friends and family, so I say I’m fine. I’d be interested to know how many other Potsies do this, too. For the people reading this who know me- This isn’t your cue to start worrying and asking more questions and demand the truth. in fact, it is the opposite. This is just a clarification of why, when you ask, I’ll always say “I’m doing great, thanks. Yes, I’m feeling much better lately.”

So does downplaying POTS negate the severity of it? Yes, but it also takes the pressure and attention off of myself for a bit, so even though I may ultimately be hindering my ability to show people just how severe this disorder is, I’d rather write about it or discuss it on my terms than tell you when we’re out with a bunch of other people. It is a very difficult disorder to have, both physically and mentally, as I’ve shared a lot over the course of writing this blog so far, and sometimes it’s better for me to keep a bit quiet about what’s actually happening, in favor of alleviating some of the focus on my physical problems and the attention that will inevitably be directed toward me if I share what symptoms I am having that day.

I’m not advocating this course of action in any way, just sharing some of the thoughts I’ve been having recently.

If any Potsies are reading this post, let me know in the comments or via email how you handle the question, “How are you doing?” at potsienb@gmail.com.

Life after DysConf- Another hospital visit, but not what you think

I think it’s pretty clear that I haven’t written in a while, and here’s why:

So I got home from DysConf, and really should have finished up my conference blog posts, but, to be totally honest, I got lazy. No excuses- I just didn’t write much.

Then things got interesting. I headed out for a run, as I had done nearly every day this summer. It was after dinner and just beginning to get dark out. Let’s call it “dusk.” It was still light out when I left to go running, but I decided to throw on my super-cute reflective-yellow vest, just in case, which turned out to be a good idea because I ended up deciding mid-run to keep going, making it an awesome 5-miler. I had been doing well with running lately, so why not? Sure, it was a little dark, but I had my phone with me, which includes in it a handy-dandy flashlight.

It would be fine, right?

WRONG.

I was viciously attacked by a rogue sidewalk. I tripped over seemingly nothing, sending myself flying forward, trying to brace for the impact against the ground with my arms. Luckily, I didn’t smash my face into the pavement, but I did bend the fingers on my right hand way too far backwards.

As some of you know, I’m an EMT, so I went all “first-aid” on myself, thinking, “I know I’m injured. Where am I injured?” I slowly pieced together that no major damage had been done to any vital parts of my body, and that I couldn’t move my right hand. Okay- I can work with that.

I picked my phone up off the ground to call my parents to come get me from the nearest corner, as I stood up. Bad idea. I blacked out and sat back down. I’d like to be able to claim POTS on that one, but I think it was more anxiety exacerbating my POTS symptoms than anything- I was worried that I had broken my hand…. and also probably a bit worried to tell my dad I had cracked my phone… again.

I called home, asking my parents to come get me, while laying on the sidewalk, and slowly peeled myself off the ground before they showed up. I said very calmly to my mother, “I fell, and I need an x-ray. I think I broke my hand.” After a little while of sitting at home watching “House Hunters,” and holding ice on my hand and wrist, it started swelling, rather than feeling better. Awesome.

IMG_2980I went to the hospital.

I was right.

Long story short- we went at 10pm and got home around 2 am, with my hand in a splint and Codeine in my system. I was told that I had broken two fingers and my wrist, and had torn a whole bunch of ligaments in my hand.

I went to the Orthopedic two days later. As it turns out, I had only broken one finger (my first broken bone ever), but yes, I did tear a lot of ligament fibers. He said to picture it like a rope- I tore a lot of little strands, but the rope itself was still intact, so that was good news, I guess.

I was in a splint for a few weeks, unable to write, and barely able to type, which made trying to do well at my new job even more of a challenge than it had been before. Hence, not posting here for a while. Now my hand is splint-free, and generally doing well.

(PS- note the compression socks I’m wearing. Stylish, no?)

So yeah, that’s my story of why I haven’t posted in a while- I was doing so well with running and getting in a good workout every day that I got careless and tripped. Simple as that. I kind of wish I could claim POTS, in some twisted way, just to have a better story than “Yeah, I’m just a spazz,” but no such luck. So now I’m good to go, and will hopefully write more. Hopefully…..

As always, feel free to email me!—– potsienb@gmail.com

DysConf 2015: Saturday

The second day of this year’s Dysautonomia International conference is coming to a close, and, as anticipated, it has been a long day jam- packed with information. My mom and I woke up again around 7:30 to go down to breakfast in the hotel’s little restaurant before the day began. Truth be told, she got out of bed earlier than I did to shower, while I soaked up every last minute of sleep I could get. So we got breakfast- powdered eggs, fruit, and croissants with juice. Not bad at all! We sat with one of the moms that we had met yesterday, and were later joined by another mother of a teenage potsie. We talked about which breakout sessions interested and applied to all of us, and ultimately split up and went to see the opening remarks, made by Lauren Stiles, president of Dysautonomia International.  She talked about the organization and what they stand for- she spoke a bit about advocacy and awareness of the disorder, and she discussed the agenda for this weekend.

Not long after her speech, we heard a talk from Dr. Wolfgang Singer about mayo clinic research on autoantibodies in POTS that would be taking place over the course of this weekend. His goal was to get 100 POTS patients to participate in this study this weekend, as it is the best place to find a large number of people meeting his criteria all at once.

Dr. Thomas Chelimsky then stood at the podium to talk about his own research. His most recent article titled, “Will the Real POTS Please Stand Up.” I guess it was a reference to some old television show that went completely  over my head.IMG_2969 I thought it was a reference to “slim shady.” Apparently not.

Anyway- after that, I went to participate in the research study by having a brief physical exam by Dr. Singer, filling out an online questionnaire, getting my blood drawn, then getting some orthostatic testing done. Yeah that was a bad idea- getting blood drawn always makes me potsie. So does getting my orthostatics done… Combining the two within half an hour of each other wasn’t such a hot idea. I got a little dizzy…. and by a little dizzy, I mean it was difficult to stay upright, but I guess that’s fairly normal. When I stood up after the five minutes of laying down, to get my blood pressure taken, I couldn’t focus my eyes. So that was fun. As soon as I was done with that, though, we got lunch.

There were a whole bunch of gluten free options, which was really interesting to see- Is it weird that I always feel bad taking that food? It always looks so good! But I also don’t want to take it from someone that actually needs to be gluten free. So I’m in a perpetual state of confusion-do I go for it or do I not? I didn’t… this time.

So after a very confusing lunch, we went to “Breakout Session B- Panel Discussion: POTS Subtype- Does it matter?” The answer to this hard-hitting question has been determined to be “a definite sort of.” Not exactly helpful. What it really boils down to is that there are a few different types of POTS, all of which can overlap, and none of which is completely definitive, so in a way, it’s good to have a general idea of what the types are and how they affect the body, but it’s not completely useful information in that it probably won’t be too determinant of a course of treatment, as that will ultimately be determined by the symptoms, rather than an arbitrary label.

That was a mouthful.

Anyway, immediately following “Breakout Session B” was “Breakout Session C- Service Dogs For Dysautonomia.” Personally, I don’t really need one, but I think the concept is incredible, and the logistics are fascinating. (more details to come on this later.)

IMG_2976Then I went to the gym. There was a two-hour long break, so I went to sweat out all my exhaustion…. make sense? Yeah it doesn’t make sense to me either, but I did it anyway. The gym at the hotel was pretty good! All the standard stuff- some cardio, machines, free weights… and other people wearing compression garments. You know, all the normal things found at every gym, right?

Then came the fun part- the banquet. I sat with my newfound potsie people from yesterday and chatted with a few parents of a potsie from Massachusetts, and having a grand time. There were speeches, a photographer, a silent auction, more confusing gluten-free food, and merriment among all. It was fantastic. Later on in the evening, when all the speeches were finished and the food was all done, there was dancing, but we didn’t stay for that. I was exhausted. Now I’m sitting here finishing up this post before bed, and it’s roughly 9:30.

So far everything has been great, but definitely exhausting. I’ve been chugging fluids like it’s my job, and popping pills at my usual rate of ‘way too much.’ More from the conference tomorrow. Sweet dreams, Dizzies.

PS- Here’s a photo from yesterday:IMG_2967

DysConf 2015: Friday

One day down, two to go, and what a day it has been! 

We got up at what I like to consider the crack of dawn- 7:30 am. My mom and I were headed down here to Herndon, VA for the annual Dysautonomia International Conference, or Dysconf, for short. We left the house by about 8:30, stopping only once on the way down so that I could urinate. Sorry to be blunt, but when you drink this many fluids on a daily (or hourly) basis, nature calls at inconvenient times. 

When we did stop, we figured we might as well get some snacks. There was an “Auntie Anne’s” pretzel place, and we stocked up on salty food and Gatorade, as one does when en route to a Dysautonomia conference. As we were just about to leave the rest stop, though, something unusual caught my eye. 

Pickles. Individually packaged pickles, with their own juice and everything! A strange find, yes, but knowing from past experience that pickles are extremely salty, I had to pick up a package and see for myself what the sodium content was. 920mg for just the one GIANT pickle. And the best part- zero calories! I had to have one. So I did. And you should too.  

So long story short, we got to Virginia, checked into the hotel, went to a random Irish pub for lunch and ate way too much. We then had to go to Kohl’s to find me a sweater because the first floor of the hotel, where the conference is held, is absolutely freezing. It’s truly absurd. I then went to the gym, showered, and we headed down to the bar, where it was fairly easy to tell who was a potsie person and who wasn’t, based on the size of their water bottle.

We socialized, we ate, and we chatted with people some more. I met IAmChronicallyWell, a fellow potsie blogger, and was (and am) totally star struck. We had a moment of “omg I follow your blog,” “I follow yours, too,” which was so cool. (Hi Nicole!) 

Anyway- today has been great. I got to see “my people” again, which doesn’t happen very often. This is probably one of very few places in the world where you can strike up a conversation with someone based on when the last time they passed out was, and I couldn’t be happier. 

Stay tuned for more from DysConf 2015!
   

 

College Graduation

Yikes, I haven’t written here in a while. So I guess I should start with the big stuff:

I graduated.

I’m moving.

I’m working on getting a job…

Yeah, that pretty much sums up life right now.

So graduation…. It happened. Finally. I can’t say I wasn’t excited to be finished with college; to say it was a challenge would be the understatement of the century, so I figure that it could only go up from there! So far, I’m finding that I was right. Graduation weekend was great. I spent senior week at home, but went back up to Geneva, NY to go get my super-important piece of paper.

I totally pimped-out my graduation cap, of course. I wasn’t about to be seen walking down the middle of the quad in all-black, with nothing fun to show for all my effort over the past four years. I wanted to make my cap meaningful, so I knew I’d be putting on a big turquoise awareness ribbon for Dysautonomia. I went to Michael’s craft store, expecting to walk away with just a roll IMG_2794of turquoise ribbon, but I ended up coming out of there with two rolls of ribbon (one covered in glitter), black glitter paper for the “background,” white lettering (just in case I wanted to write something), and fake pearl stickers. So here’s the final result:

“Actions Not Words” is a shout- out to my all-girls, private, Catholic high school days at Oak Knoll- Cornelia Connelly is the best. “Lives of Consequence” is part of my college’s mission statement. I really liked the combination of the two, since that’s something I strive for every day. The turquoise awareness ribbon should be self-explanatory, since you’re reading a blog all about what it stands for….

At graduation, we were sitting in the blazing sun on an 80-degree day, in the middle of the quad for about two and a half hours, which, to a Potsie, is something to be avoided at all costs. Unfortunately, there was no avoiding it this time. I knew that I would have to be able to sit in the heat, in a black, long-sleeved gown for hours, then stand up and walk across the stage, in front of hundreds of people, to receive my diploma.

I did it (but not without some forethought).

I brought a bag with me, pre-approved by the Dean’s office and Campus Safety, that included several must-haves on a hot summer day:

5 bottles of Power Ade

3 rolls of Nuun Tablets (to put in the power-ade, for added POWER…. or salt. Same thing.)

2 hand-held electric fans (because I’m just too hot to handle. ooh la la!)

2 ice packs (to put under my feet and on my neck to cool down)

The bag was heavy, but completely worth carrying across campus to the quad, where I used everything in it. Unfortunately, I could not include a bathroom in that bag, so I just ran out after getting my diploma and came back… no big deal.

All-in-all, it went really well! It was exhausting, and I was completely wiped10957752_10206646235173089_5247089135713434557_n afterwords, but I finished college and was able to walk all by myself across that stage. No cane, no hand to hold onto. I didn’t fall off the stage, either, or pass out, or worry too much about so many people watching me in all my unsteady glory.

I got my glorified piece of paper, which honestly doesn’t seem like much after so much time, money, and energy put into the past four years, but now I can say it’s finally over and I can move onto new things. I can finally leave college behind, like the glitter falling off the back of my cap.

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Thoughts? Comments? Share with me!!

As always, If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS.

Please message me!- potsienb@gmail.com

To all my fellow Potsies, good luck out there!

I Made a Speech!

Exciting news! I got to write and “perform” a speech for a class that I’m in, on a subject of my choice. So guess what I chose? Dysautonomia awareness and research funding, of course. Yay! So naturally, due to the nature of this work of art, if I do say so myself, I thought I’d share with you all! I’m quite proud of it, since it absolutely had the desired affect of shock and awe. Nobody in the class knew what hit them! Not one person knew what Dysautonomia was until I told them, which made it actually rather interesting for me to see their reactions to the statistics you’re about to read.

Beyond all that, I think the speech will “speak” for itself. (pun intended)

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Thank you to the members of the Department of Health, who have allowed me the time to speak to you all today. I came to you with the intention to increase your awareness of an illness currently affecting an estimated 1 to 3 million Americans.

Dysautonomia is an umbrella term for a malfunction of the autonomic nervous system. This can manifest as many different disorders, as the autonomic nervous system controls many of the body’s involuntary functions, such as digestion, muscle impulse, blood pressure and heart rate regulation, breathing, and much more. Some of the most common disorders include Postural Orthostatic Tachycardia Syndrome, Ehlers- Danlos Syndrome, Gastroparesis, and peripheral neuropathies, all including symptoms of gastrointestional upset, fainting, chest pains, shortness of breath, and more. To quote the leading advocacy and awareness group, Dysautonomia International, “People of any age, gender, or race can be impacted. There is no cure for any form of dysautonomia at this time, but Dysautonomia international is funding rehearch to develop better treatments, and hopefully someday a cure for each form of dysautonomia.” This is why we need your help.

When compared to other disorders and diseases receiving funding for research from the National Institute of Health, Dysautonomia receives only pennies. MS, which affects 400,000 people receives 100million dollars per year in research funds, equating to $250 per person. Parkinson’s, which affects 1 million people receives 156 million dollars every year to go toward the development of treatment, resulting in a contributed $156 per person. Postural Orthostatic Tachycardia Syndrome, the most common and prominent form of dysautonomia, affecting 3 million Americans, receives less than 1 million dollars per year from the NIH. That’s less than 33 cents per person- not even a fraction of what other disorders, affecting far less people, receive. The NIH publishes a list of its categorical spending, listing its contributions to the research of 244 areas. Not a single form of Dysautonomia makes the list, despite the fact that it is estimated to impact 1 out of every 100 teenagers, and there have been 70 million cases reported worldwide as of last year. This is pitiful, knowing that the suffering of patients with Dysautonomia has been compared to the disability seen in conditions like COPD and congestive heart failure.

I come to you with a passion for awareness and for a change in this extreme lack of research funding not only because of this egregious lack of awareness of something so negatively affecting so many Americans, but because I am one of those who have been impacted by this disorder. I have experienced the symptoms of fainting and severe muscle cramping and spasms. I have been unable to walk because of the pain and fatigue from fighting, but now I can stand again, and I am taking a stand for those so affected that they are unable to do so for themselves.

What we are asking for is a cure. A lofty goal, yes, but nothing is impossible with appropriate funding, and I’m sure we’d all agree that 33 cents per patient is a completely inappropriate amount. I am asking you today to raise our research funding by only 10 dollars per person, per year, making next year’s funding only $10 million: Still a small fraction of the money given to the research and development of treatment for other disorders.

Due to the current numbers of reported cases of Dysautonomia, everyone in this room will be affected by this at some point in their life- whether themselves, a loved one, or a friend of a friend, but no matter the degree of separation, all I ask of you is to give thought to funding appropriation that could end the suffering of a stranger or a friend.

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Thoughts? Comments? Share with me!!

As always, If there’s anything in here so far that you can identify with, keep reading as I post. If you can’t relate, but want to read more about my journey as I carry on, keep reading. If not, then I hope you learned something about POTS.

Please message me!- potsienb@gmail.com

To all my fellow Potsies, good luck out there!