Beautiful Lengths

So I got a few hairs cut.

Some of you have seen me and been like “woah!” Others haven’t recognized me… that’s prettymuch the two reactions I’ve been getting over the past week, so I figured I’d do a post on it, since I find it kinda funny!

Before I go further, here’s the before and after:

IMG_2728 IMG_2732

Just a little shorter….. 8 inches, to be exact!

I had been wanting/needing a haircut for a little while now and couldn’t decide what to do, so I went back to a pixie cut. I donated the rest of my hair to Pantene Beautiful Lengths, a partnership between Pantene and the American Cancer Society that provides free, real-hair wigs for women with cancer.

It meant a lot to me to be able to donate my hair for these women. I’ve had to go through a lot over the past year, and I can’t even imagine what these women are going through. I’ve been so fortunate to have people in my life that make me feel better about myself when it gets rough, which makes me want to pass it along in any way possible when I can. Chronic illness is not fun, to say the least, and anything I can do to make it even a little bit more comfortable for someone going through such a difficult time in their lives or make them feel better about themselves, is 100% worth it to me. It’s not about bragging or saying “look at me, I’m helping someone,” I’m actually helping myself. I get a fabulous haircut, and get to know that this little contribution may help someone to feel better about how they look.

If you’re thinking of getting a haircut anytime soon, consider Beautiful Lengths- It’s a fantastic program that is very transparent, so you know exactly what happens with your donation, whether physical or financial.

So yeah- that’s the story behind my haircut.

Email me! potsienb@gmail.com

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!

Vulcans and Valium

My legs and feet cramp up all the time. It’s no surprise to anyone at this point if my feevulcant decide to give the vulcan symbol for “Live Long and Prosper,” separating in the middle of my outstretched foot. My toes go off in their own directions, shaking and spasming at will, each deciding that they now want to turn me into a ballerina with perfectly pointed feet, though unable to decide which way is up.

My calves begin to cramp, ending in a ‘charlie-horse,’ during which I can physically feel the knot formed in my muscle. It feels awesome. NOT. I’ve previously posted that standing on ice helps immensely when trying to fend off the cramping. When it starts, I go stand on ice and 10 minutes later, the cramping goes away. So a few nights ago, at around 3 am, I got to put this theory to the test again. And again, it worked! I woke up to my calves trying to flip themselves inside-out, got out of bed, put on a coat and walked outside barefoot. My porch was covered in snow and ice, and it was about 4 degrees outside. I stood there for a few minutes until the cramping stopped (either that, or I got frostbite. It was 3 am- I couldn’t tell!), then came back into my room, hung up my coat and fell asleep again. And all I had to do was walk outside! (A definite perk of living in the snow-covered Northeast right now!)

Unfortunately, though, this didn’t work for me last night. I was sitting in my room, minding my own business, when this happened:

All of that is leg cramps from my hips down through my toes. Talk about painful! I was actually laughing through tears on the phone to my parents, saying “I’m totally gonna write about this tomorrow!”

Long story short, after talking to the on-call neurologist at Columbia in NYC, I went to the ER to see if they could do anything to stop the cramping. I know some of you are thinking- “just eat a banana!” or “take a muscle relaxant and take a hot bath!” If ONE more person tells me to up my potassium by eating bananas, I’m going to have a cow. After the bloodwork done last night, my potassium, magnesium, sodium, etc. levels were all totally fine. And for Potsies, muscle relaxants and hot baths are some of the WORST things we could do to ourselves, since both will lower your blood pressure. Lowering blood pressure= lowering our ability to remain upright due to symptoms including diziness, light-headedness, and general ickyness that nobody enjoys.

So anyway- my cousin, Linda, took me to the ER up here near college, after over an hour of leg-cramping fun. She stayed with me for a few hours while I got blood taken to check all sorts of levels, an intramuscular shot of Valium, a liter of IV saline to make sure the Valium wouldn’t make me potsie, then aIMG_2671nother Valium pill, since the first dose didn’t completely stop the cramping. Neither did the second dose, but it made me sleepy enough that by the time I got home, I went straight to sleep. She was laughing at me a bunch, since when we pulled up to the ER doors, I began to get out of the car, saying, “Thank you so much for driving me!” To which she replied, “As if I’m not gonna stay with you??”

I was really glad she did stay, since it was great to have someone to talk to, between the doctor, and my nurse, John, who was totally awesome. He was a realist in telling me that the only ways to get rid of pain are to a- fix the problem, or to b- give drugs to make you not care that the pain is there. He made a very good point. We certainly weren’t fixing any problems last night, but drugs are nice, I guess.

Long story short, I really enjoy Valium. It’s not that it did too much to get me “high,” or whatever, but it made the cramping stop almost completely, and it certainly made me not care about all the pain in my legs. It actually made me feel kind of light-headed and dizzy. I’m sure this must be what getting high feels like, though to me, it just felt like I was Potsie, which couldn’t be the case since I was hooked up to saline… Either way, look at that smile! Linda took this pic as I was talking to my mom about what was going on at the hospital.

Today I’m just super sore. Everything hurts- both my legs from my muscles trying to rip themselves apart, my left arm from the IV, and my right shoulder from the shot of drugs. I’m also pretty darn potsie again, and I’m using my super-cool pimp cane, since my legs don’t want to support me while walking over the snow. (see The Baby Giraffe.)

Anywho- Not to complain, just felt like sharing my night with y’all, since I haven’t written too much lately. Gotta get back to it somehow, and what better way than to share a traumatic story?

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!

The Baby Giraffe.

When someone thinks of chronic illness, they think of the physical stuff of being sick, right? Like having no sense of balance and totally failing at yoga and most forms of dancing, or always carrying my giant Nalgene water bottle with me, full of some unidentifiable substance that usually tastes10481066_934942063189596_3020944253601202054_n like Alka Seltzer. They might even think of me with my pimp cane… yes, a pimp cane.  It’s blue and silver patterned and is super duper cute, you know- if you’re into the whole 21 year old, old lady thing….

The funny thing is- as much as the physical stuff is completely apparent a lot of the time and everyone is always amazed at how “strong you are,” and how “you’ve come so far,” nobody really thinks about how hard it is to be “strong” and to “come so far.” So even though I don’t use my pimp cane too often anymore, I can work out again, and generally am doing a lot better than just a few months ago by any standard, I’m still exhausted. It takes up a lot of energy to peel myself out of bed every day, drinking fluids out of the water bottle strategically placed on the floor next to me the night before, from the minute I wake up. It takes a lot of effort to work out through being dizzy with a heart rate that just will NOT come down below 190, when I’m just trying to go for a slow jog around the track at my gym like a normal person, then go back to class and have to participate in discussion about a book that I really couldn’t care less about, while chugging fizzy drinky stuff so I don’t see stars.

Above all, right now, it takes a lot of focus to walk through the snow.

No, seriously- walking through the snow is really hard! Up here at school in western NY, we’ve got snow just like the rest of the Northeast at this point. The ground is uneven and invisible, which makes walking across campus an adventure for the most coordinated of people. (I saw some girl slip and fall right on her butt today… not gonna lie, I may have giggled a bit. After she got up, of course.) Now stick someone who is constantly ‘potsie’ in the snow…

I’m like a baby giraffe. A graceful baby giraffe. I should be my own one-woman show. A comedy act.

Funny as it is, whenever I get stressed or exasperated or frustrated about things as simple as walking through the snow or writing a paper for school, or even just being at school, I end up getting potsie. I get all the same symptoms as if I were having a POTS issue, though my vitals tend to be okay. It’s bizarre, but that’s what anxiety will do for ya. It’s a huge challenge because even if I don’t feel tense at all, my body might be trying to clue me into what I’m actually thinking and feeling (and repressing, in most instances).

I guess the point I’m trying to make is that the challenges of chronic illness, from my experience, are not only physical. The physical and mental aspects of life are so intertwined that it’s often extremely difficult to tell the difference between them. Yes, we may ‘come so far,’ but even that progress takes its toll, and I have found that it’s completely normal to push and push for months at a time to get better, then break down for a week. It’s incredible and incredibly frustrating at the same time….

I don’t mean to complain, merely to make it known that improvement is often more challenging than we, as potsie people, make it appear- it’s two steps forward, and one back. Sometimes two forward and three or four back, and it really sucks. But this is our reality, and it’s something I am still getting used to, even four years into my POTS adventure. I’m not sure that I’ll ever get to a point of really accepting that if I get even a little stressed, my body goes all wonky, but it’s just one more Potsie thing to handle, I guess!

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!

IMG_2527PS- I know this is supIMG_2526er late, but shout out to Uncle Michael, Aunt Ro, and Giovanni! Potsie has proven to be a faithful companion. Here he is on his first day with me, then going out to buy food for my guinea pigs, Polka and Dot!

To my Herons…. A letter to my rowing team

To my Herons,

The other day I went to our team workout, expecting that we’d be doing a circuit workout, and knowing full well that I wouldn’t be able to participate. Most of you began to ‘riverdance,’ and I left, going into the fitness room to start biking with a few of you who were bike testing (GREAT JOB!). I got bored. So I decided to run around the track, hoping that running around in a circle for an hour would be more entertaining than staring at a stone wall in the fitness room. It was certainly interesting, I’ll give it that.

It wasn’t long before I started feeling funny (see my other posts for what I mean by that). I looked down at my heart rate monitor, expecting it to be somewhere in the 150’s to 160’s.

It read 196. I stopped running.

After a few minutes of walking, I laid down on the side of the track to try to bring my heart rate down. It got down to about 110 and I felt a lot better, so I got up and started jogging again. Immediately my heart rate went up to 190. So I laid down again to bring my heart rate down. I then got up and repeated the cycle. This time, I didn’t get back up for a while.

During the course of this “workout,” not one team member came to see if I was alright.

No, it wasn’t just one. It was EVERY teammate that passed by. Every one of you that saw me laying on the ground staring at my heart rate monitor came over and asked me if I was okay and if there was something you could do.

I just want to tell you that even if most of the time, I will say “no thanks, I’ll be fine, keep going with your workout!” I’m so happy and relieved to know that if I ever do need to say “yes, I do need help,” you’ll be there offering me a hand. It means so much to me to know that my teammates are not just teammates. You are amazing friends that will drop what you’re doing to come to my side, just in case I ever need help, without me ever saying a word. You are amazing women who are not only strong athletes physically, but also have some of the strongest hearts I know, because you extend them to others without thinking twice.

I’m going to miss you all so much over Winter break, but knowing that you’re supporting me every step of the way through this disorder has helped me so much to even get this far. I will be back in the Spring to row with you, hopefully not having to lay on the floor anymore, but if I do, thank you for being you and reaching out to me.

Herons really do flock together.

Love you ladies! – Nora

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!

My Milestone

There are many events that can be marked as a milestone in any Potsie’s life:

  • First time getting dizzy (aaw, I remember those days!)
  • First time having a pre-syncopal episode
  • First time blacking out
  • First time trying some crazy diet to see if it’ll make our bodies hate us just a little less
  • First time having to lay on the ground in public
  • First time feeling better since being diagnosed (only to sometimes fall right back to where you started….)

Last night was another milestone for me. It was my first time going to the ER for IV saline, (which really isn’t as much fun as it sounds like it would be) and all because of a little stomach bug.

Not to be gross, but I’ve been throwing up quite a bit over the past few days, making it impossible to keep down all the food, fluids, and fluorinef I need for my body to function like a working human being. It’s been a bit rough. Upon consultation with my cardiologist after class yesterday, it didn’t take much for her to say “have someone take you to the ER for a couple liters of saline.” It took me until today to realize how truly disturbing that was. This is the woman who has been treating my POTS for around four years, now, and has never once let me go to the ER for it, or have an IV for it, or anything reaIMG_2448lly… You know, with the exception of fluids, meds, and copious amounts of exercise, which I guess has been working, so there hasn’t been a need to do any of the more drastic measures (that other doctors would consider perfectly normal, but whatever).

Anyway, I walked into the ER with the assistance of my blue and silver “pimp cane,” and my friend’s watchful eye (Shoutout to Clover! You da best!), looking like this: –>

IMG_2453And 2 bags of IV saline, 1 dose of Zofran, and 3 hours spent with my buddy Ben (thanks for staying with me!!) later, looked like this: <–

I REALLY like IV saline right now… I know it’s not the best solution (pun definitely intended) for me personally long-term, and as soon as I can get over this dumb stomach bug, I’ll be back to my routine as usual. In the mean time, though- the observation can absolutely be made that there is a marked difference between my first and second pictures here, and as much as I can totally rock the pale Irish-girl look (and do it fabulously on a daily basis), a little pink in my face looks much better, and feels much better, too!

And when I say ‘much better,’ I don’t mean ‘completely awesome,’ or ‘totally back to normal,’ but it’s better than not being able to sit up by myself. It’s definitely better than having to dive for the floor before I black out. So though IV saline may not be a good long-term option for me, it certainly helped when I really needed it to, which is all I can really ask for, on a day like this.

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!

Ice, Ice, Baby

Ouch. ouch. ouch. owwww. ouch. pain. why??? Yeah, that’s fun to wake up to.

Normally, having Small Fiber Neuropathy in my feet and legs isn’t too horrible… A little foot cramping every day, no big deal. Even that, most people would probably find pretty uncomfortable. After around three years of dealing with it, though, I’m pretty used to my feet cramping. (And no, if you’re wondering, eating a banana doesn’t help… I get that a lot.)

This morning, though, my legs decided that they wanted to flip themselves inside-out and curl my feet into some pretty interesting contortions.They did this over the summer, too. Picture a charley horse in your calf. Now picture it in both calves. Now picture it in both calves at the same time.cramp Now just imagine that cramping and contorting lasting seven hours while you writhe in pain on the couch, shamelessly watching TLC to distract yourself from my lower extremities’ desire to rip themselves from your body. So yeah, that’s what I woke up to this morning. Super fun. It didn’t last seven hours this time, which is fantastic! But I still feel like this: –>

Thanks to my cousin, Linda, swooping in to save the day, my legs stopped cramping after only about three hours.

What’s the secret, you may ask? ICE. Plain old frozen H20. How weird is that?? Seriously, this is something my doctor told me over the summer when this happened- if you stand on blocks of ice, the cramping will stop. I think it has something to do with freezing the nerves to make them fire less signals or whatever, but the point is the cramping stops! That’s not to say that it makes everything instantly better… If your muscles try that hard to rip themselves apart, they’re gonna stay pissed off for a while. photo (1)As of now, my muscles from the knee down are just exhausted and sore. Now it’s time to apply heat, and lots of it! And Icy-Hot, and Advil…. and just generally managing residual pain, praying that the cramping doesn’t come back. And all it really took to fend off the majority of the beast was sitting like this for a while!  –>

I guess the point I’m trying to make is that Dysautonomia can sort of be like that Bud Light commercial- “It’s only weird if it doesn’t work.” For me, this isn’t weird…. okay maybe it’s a little weird. But it still works! It may take a few hours, but who cares? In a Potsie’s world, a few hours is NOTHING! Symptoms can last for years, so a few hours is totally manageable. Painful, but manageable. Okay really painful. Leg cramps are no fun, so I totally sympathize with anyone else that gets them. Monday I get to see if I can get more drugs. GO DRUGS! I like drugs.

In the mean time, wish me luck! And to those of you that get foot or leg cramps, I’m so sorry! It SUCKS….. And thank’s for reading my ranting again!

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!

PS- Can’t have a post titled “Ice, Ice, Baby” without this: