Sorry I didn’t answer your question

I’m a rambler when I’m nervous. And when I’m not nervous. When I’m perfectly fine, when I’m happy, when I’m angry, when I’m every emotion, I usually talk.

When someone gives me a question I don’t have a good answer to or don’t want to answer, I still answer. I’ll give them an answer to a related question without addressing the fact that I’m not even answering the thing they inquired about. If I’m slick enough, they won’t even notice.

But maybe now, after this declaration, they will.

Sometimes friends ask me about how I’m doing with POTS—and even though I’m always game to talk about Dysautonomia International and the work they’re doing, or maybe cool new research, or the fact that my arm fell asleep in under 30 seconds last night–I know my friend is kindly asking about my chronic health problem.

And here’s where the real baggage comes in.

chronically wide eyed and vulnerable

When there’s been no progress with POTS, I don’t want to tell them that. I hate that there’s been no changes. I hate that there’s nothing new to report in my health, I hate that sometimes it’s even getting worse, because then I’ll have to explain that yeah, sometimes that just happens, and no, it’s not my fault (even though I occasionally blame myself when I shouldn’t) because I don’t want them to blame me either (even when I know my friends and decent humans would never do that).

I run away from the reality of “chronic”, I run away from the reality of life and I divert their attention.

They ask about POTS, I answer about something else.

Sometimes I answer about the progress I’m making in therapy, how I’m not standing still or regressing. How I’m moving onward, forward; how I’m doing something that they can be proud of—even though the very act of getting through a day with one chronic illness, no less a handful, is something they can be proud of their friend for.

Because the vulnerable side of me feels like if I can’t produce results in one area, I better produce results in the other.

Today is a day where I can see things clearly, and I want to say and reaffirm to myself and to anyone who might struggle like I do at times: please don’t feel like your life has to be strictly results oriented. Making an effort, taking care of yourself, being a kind person matters so much more than producing tangible results in work or in health or in any realm. If you have a chronic illness, leave the results to the doctor. All you’re responsible for is effort, that’s all anyone can ask of you.

*

I didn’t make any formal resolutions for 2017 on New Year’s Eve, but every year as I get older, I realize how important it is for me to be nicer to myself. I want to treat myself today like I would treat the younger version of myself—protectively and with patience and compassion. I look at my younger self and want to wrap her up and say “it’s going to be OK, just hold on!”

I want to have those same feelings for myself now, and by having those feelings, I think I’ll be able to be more honest with myself and with my friends.

And maybe I’ll get around to answering your questions head on.


2016 Dysautonomia inspired gift guide

Happiest of happy holidays, friends!

The gift giving holidays are rapidly approaching and I’m procrastinating my holiday shopping like nobody’s business. That doesn’t mean I don’t have time to help you guys in your holiday shopping for your loved ones with dysautonomia.

And if nothing here strikes you, check out last year’s guide, because I feel very confident that something will strike you as a good gift.

*

Shopping reminder: when you use Amazon, shop through smile.amazon.com and select Dysautonomia International as your charity of choice! 6% of your total purchase price will be donated to them at no extra cost to you!

*

Terry Cloth Robes

Some people feel invigorated and reenergized from a shower. POTSies are not those people.

Bathing can be beyond exhausting, and since you can’t change that fact, you can give the gift of a comfortable calm down in the form of terry cloth robes. POTSies can sit and dry off in warmth and comfort rather than shiver in the cold in makeshift towel coverings.

I got the pictured Lands End robe for Christmas last year and it’s my favorite robe that I’ve ever had.

*

Himalayan Salt Lamp

POTSies live on salt, so it’s no surprise that so many of us are intrigued by the possibilities of Himalayan Salt Lamps being helpful. Allegedly, the lamps produce tons of negative ions which are supposed to help oxygen travel our brains more easily, help us feel more alert and even clean the air we breathe.

According to all of the research I’ve done, there’s no basis for the claims that Himalayan Salt Lamps can create negative ions strong enough to produce any of these benefits. That doesn’t mean it isn’t an awesome looking lamp, and that people on high salt diets won’t appreciate having a giant salt rock as a lamp and decoration. For that reason, I still recommend it as a great gift to give. They come in tons of different shapes and sizes.

*

Swanky Box for Pills & Supplies

Most everyone I know with dysautonomia has a personal pharmacy. Some of us use clear plastic storage boxes, shoe boxes or large trunks if it calls for it. Still, it’s nice to be offered alternatives to our personal pill storage (or even storage options for our other medical supplies, because we got ‘em).

This is the perfect time for a gift buyer to give us the “ooh, pretty!” options we didn’t feel like we could treat ourselves to before.

*

Spoon Ring

The Spoon Theory is huge in the chronic illness community—it started as a way for us to explain our limited energy supply in terms of spoons—and has evolved into an identity. The chronically ill are Spoonies, we need more spoons (or energy) in order to get through the day.

A quick way to pay homage to the Spoon Theory for your chronically ill friend is by gifting them a spoon ring—rings made out of old spoons that are great as thumb rings in particular. I’ve had one for about five or six years and have gotten endless compliments on it. Etsy is the best place to find them in my experience—and here are some great ones.

*

Artwork

One of the good rules of gift giving is to get someone a gift that they wouldn’t buy themselves. When you’re chronically ill and strapped for cash, you’re not going to spend your limited money buying artwork for your bedroom, no matter how much it improves your morale.

I can’t say what your friend/brother/sister/daughter/son/girlfriend/boyfriend/acquaintance/secretsantaperson will like best in terms of art.

If you’re going with a dysautonomia fighting theme, look for turquoise, ribbons, spoons, zebras if they have EDS. Otherwise, just look for something that looks nice, something that reminds you of the best parts of them.

*

Hat, Scarf & Gloves

Give me a room full of POTSies. Half will be shivering and half will be sweating. Temperature control does not exist where dysautonomia is concerned and winter does nothing to help matters.

Even though a lot of POTSies run warm (or even sweaty—myself included), if it gets cold where you live, hats, scarves and gloves are the classic gift for everyone, dysautonomia or not. They’re festive, they’re pretty, it’s hard to go wrong.

Also, a common comorbidity with dysautonomia is Raynaud’s Syndrome which leaves peoples’ feet and hands feeling numb or freezing cold due to poor (or truly just garbage) blood flow. So if your friend is constantly rubbing their hands together complaining that they’re freezing, this is your time to shine as a thoughtful gift giver.

*

Lap Desk

Some people with dysautonomia are bed bound. And even the ones who are not bed bound still tend to spend a lot of time in bed or lying flat on their backs because they’re least symptomatic that way.

All of us who have used laptops are familiar with how quickly they go from computers to searing hot irons of white hot burning pain without proper ventilation when sitting on your legs which is why a lap desk is necessary to use a laptop. They’re also great for setting up pills in your room, doing homework and coloring in coloring books (a perennial favorite of humans everywhere.)

*

Aromatherapy Diffuser & Drops

Essential oils are tricky. There are some companies trying to suggest that their blend of juniperberrycitronellaspruceetcetera is going to help me forgive people if I rub it on pulse points and heart. But I do know for a fact that I feel a little calmer when I take a deep breath and inhale peppermint very deeply.

So with that in mind, that I’m not suggesting that grapefruitpeppermintcinnamongingerspice in water will cure dysautonomia, I’ve heard some nice things about diffusers—if nothing else that they make your loved one’s house smell amazing and that’s a nice gift to give.

Plus, I found a diffuser that looks like a WHALE. If that doesn’t excite you, nothing will.

*

Headache Essential Oil Roller & Cream

So another thing about aromatherapy. These things (an essential oil rollerball and headache cream) will not make headaches go away. But they help so much and are as important to my routine of treating headaches as ibuprofen and drinking lots of water or consuming caffeine to fight off a headache.

I’ve become a bit of an evangelist about these two products (I don’t get any kickbacks from them, but I’d love to), and while it might seem weird to give as a Christmas gift, I can guarantee you that even though these are things I buy maybe once a year (because yes, they last that long!), I would also love to receive them. They cool your skin on contact and help ease the tension you feel during headaches and migraines. I love them and maybe you should buy a couple for yourself, too.

*

Miscellaneous dysautonomia themed gifts

And some things I found online that just looked cool

*

Did I miss anything awesome dysautonomia themed gifts this year? What’s on your wish list or shopping list? Share in the comments!


Thanksgiving turkey

I’m grateful for fuzzy feelings on Thanksgiving

Hey, hey, hey!

I have fallen off the face of the earth in regards to this blog, but now is the perfect time to come back and write the most basic of blog posts, the “what I’m thankful for” post. And also, it’s good to have these things thought out before it’s my turn to say what I’m thankful for at the dinner table.

I can get very cranky, (blame it on the chronic pain), I generally employ an attitude of “ugh, well at least it’s not THIS” instead of “oh hooray, this happened!” in terms of optimism—but my mom did raise me to go over my favorite things at the end of the day. We used to keep a family journal of our Favorite Part of the Day when my brother and I were kids, and now it’s more of a nightly meditative ritual for me before I fall asleep and a yearly “OK, these things are good and don’t suck” inventory around the holidays.

So here we go—these are my happy, grateful or non-sucky things that I’m grateful for this Thanksgiving and this holiday season and most days.

Group chats and Skype sessions

I became a champion of long distance friendships in middle school and keeping in touch is a helluva lot easier which is great, since I keep missing the people I love more and more and more.

I love group chats, I love the fact that I can almost hear my friends’ voices in their deliberate choice of capitalization and use of emojis.

I love Skype, I love that my friends and I can eat dinner together in our rooms on weeknights in our sweats and hair piled on the tops of our heads and do BuzzFeed quizzes to verify which quiz is totally rigged and which one is, indeed, scientifically accurate.

Doctors who are generous with their time and resources

Overly compassionate doctors are hard to come by. Probably because I found all of them and I’m hoarding them up from the rest of you. SUCKERRRRS.

I really hope I don’t jinx anything, but I’m outrageously happy with my team of doctors. Several of them have gone far and beyond their call of duty in getting me the treatment I need and I couldn’t be more grateful for them not only as doctors but also as human beings.

Every service that lets me watch videos ever

I am drowning in an embarrassment of riches in entertainment. As a passionate lover of television programs, this is all I could ever want. I am never without something to watch, something to distract me, something to entertain me. AND something to suggest to others, thereby proving how fancy and cultured I am.

I can’t tell you how big a difference good entertainment makes when you’re sick, when your body feels like it’s falling apart. When your mind at least stops hurting along with it, flares don’t last nearly as long.

My friends

I’m grateful for all of my friends, their time, their faces, their existence.

But ohmygosh my heart bursts and grows a million billion sizes when I’m with a friend of mine and we’re out and about then they ask, “hey, do you need to take a minute to sit down?” or we’re planning something and they’re choosing a location and say something like, “oh, this place will be fun, there’s tons of seating!”

It means the world, I feel like the whole of me is remembered and accepted, and it’s sweet. It’s thoughtful. It’s important. It’s everything. It’s a moment I want to document and package in a Hallmark card sell to people at an extremely high markup because it would definitely sell. Because that’s the spirit of Thanksgiving.

My family

The most classic of things to be grateful for. But I’m so grateful to be born into a family whose empathy and experiences allow them very often to understand what I’m going through, or at least provide them the patience to give me time to deal with my plethora of problems. And if it’s all a ruse and they really don’t feel that way, then they’re damn good actors, and I’m grateful for that.

The basics

Safe home. Clean water. Food to eat. Necessary meds to take. Health insurance. Comfy bed. The daily essentials that millions live without that for whatever reason I’m lucky enough to have every day.

Progress

It’s slow. And I don’t always see it, but the people around me remind me of it. And it’s happening.

*

I hope your Thanksgiving is lovely. I hope no one brings up the election, I hope everyone is on the same diet as you so there is no confusion as to whether the stuffing is GF or not, I hope if you’re a young adult, no one asks you what your life plans are and I hope that you get the the exact amount of dessert you desire.

Happy Turkey!

 


Why I’m very suddenly excited about health policy legislation

This is Shira Strongin. She runs the blog and community The Sick Chicks which is pretty great and you should head over there sometime soon if you aren’t already familiar.

Shira received the Amelia Moore Sparkle Award at #DysConf recognizing her advocacy for fellow dysautonomia patients

Shira received the Amelia Moore Sparkle Award at #DysConf recognizing her advocacy for fellow dysautonomia patients

We met this year at the Dysautonomia International Conference and became prettttty good friends and the fact that we weren’t best friends until now is a crime.

Shira and I got very close very quickly. And Katherine approved.

Shira and I got very close very quickly. Katherine approved.

Along with our #DysConf buddies, we ate a lot of kettle corn, sang songs from Hamilton, had a lot of fun with emojis and social media’d it up. (#DysConf is the best parts of summer camp combined with a medical conference. It’s everything you never knew you needed.)

Anyways, when this excellent human isn’t busy battling chronic illness head on, she’s advocating on behalf of fellow Sick Chicks, rare disease patients and chronic illness spoonies while being a catalyst for making meaningful legislation happen. (NO BIG DEAL, except it is.)

Shira’s current projects are helping push the 21st Century Cures Act and OPEN Act through Congress. Because yes! Citizens are a part of the legislative process. (See: Schoolhouse Rock for some basics.)

So rather than macerate the descriptions of Cures and OPEN Act, I went to the source to get the best information possible. Also, because only Shira can answer a few of these questions.

 

Q&A with Shira

How are you?!

Missing you! Health wise though: I’ve had quite a few bumps in the road recently, but that’s part of the life with rare disease.

(editor’s note – I miss her, too.)

 

How long have you been working on 21st Century Cures and OPEN Act?

I’ve been working on both Cures and OPEN Act in various ways for a little over a year now, so pretty much since when they were introduced, but it’s crunch time right now for Cures as the vote is coming up in September, which Senate has been pushing off even after it overwhelmingly passed in the House.

 

Explain Cures and OPEN Act in emojis OR 10 words or less

Oh heck yeah, I’m doing this in emojis

shira-curesactinemojis

21st Century Cures Act

shira-openactinemojis

OPEN Act

 

What is the most important thing you want everyone to understand about these pieces of legislation?

Okay, so I’m going to have to say two things:

  1. Cures are for everyone
  2. Yes, 21st Century Cures is extremely costly, but progress always is. What better thing to invest in than our future? By investing in healthcare we are literally doing that.

 

What can rare patients, Sick Chicks and chronically ill patients look forward to if these pieces of legislation pass?

Basically an overhaul of the currently malfunctioning medical system, and turning the focus around on; discovery, development, and delivery through:

  • More research
  • Increased funding for the National Institute of Health
  • More clinical trials
  • Better and more affordable access to medications (including off label medication)
  • Precision medicine being practiced
  • For rare disease patients, with OPEN Act, current off label treatments have the potential to become approved therapies
  • Etc.

 

Why do these things matter outside of the rare disease and chronic communities?

  • 1/10 people have a rare disease. Even if you’re not affected by a rare disease, everyone knows someone, so care for you sibling, your parent, your weird-distant cousin.
  • If 1/10 people have a rare disease, imagine how many people have more common chronic conditions? Same logic applies.
  • Just because you might not be sick now, [it] does not mean your future is guaranteed. And because of that “in case” we all need to be aware of major health legislation like Cures and OPEN Act that will be life changing and saving.
  • Health is a universal, bipartisan issue. We need to step up and show that we give a damn about our future.

 

Why is amplifying other youth voices in your advocacy important to you?

Youth are the future. Every piece of legislation in talks now affects us so greatly because these are shaping our future. As someone whose future is always called in question, confidence and having say in your future is powerful.

Because of my health I’ve had to accept how much of my life is out of my control, but being involved with legislative advocacy allows me to take back some level of control. I want others to realize what a unique and important voice they have along with just how much of an impact they can make.

With Cures and OPEN Act being health policy, I think it’s even more important youth voices are heard because for many of us without this legislation we will most likely not have a future. We are running out of time, and we need #CuresNow.

 

What is the best way to get involved?

In Sick Chicks I wrote a post about “The Fight For Cures Now” with some action items, and I’ll list some here as well!

 

*

A million thank yous to Shira for (1) being generally great, (2) acting to make real, positive change happen for people who need it, (3) DOING ALL OF THIS WHILE SHE STARTS HER SENIOR YEAR OF HIGH SCHOOL. This girl can get it.

And I encourage you to support these acts. I’m not claiming to fully grasp or understand how any of this will work out should they become law. But I do know that there are people much smarter than me who believe in this legislation, understand it, and know how to put it into action so that people like me, like Shira, like our friends and our loved ones and people we have yet to meet, can live better, healthier and longer lives.


It gets better with time

Seven years ago today, at the age of 16, I had a major POTS episode. But at the time, I didn’t know it was a POTS episode. I was undiagnosed and blamed the whole event on myself, my interpretation of my own laziness, my inability to take care of my body.

My heart rate was sustained at 180+ BPM for close to two hours with a mess of other symptoms (nausea, blurred vision, I was white as a ghost, pain in all of my joints, etc.) and I ended up sleeping on the floor of the bathroom with gastrointestinal problems. My mom tried to take me to the emergency room but I was a headstrong teenager and refused. I reasoned that I was just having a stomach flareup and the tachycardia was a response to me being very out of shape after doing a bit of running around in the heat of summer.

Because for years, those were the things my cardiologists had told me when we asked about my tachycardia.

“You’re fine, you’re just out of shape.”

That night, my mom texted my psychiatrist, the only doctor along with my therapist who believed there might be something else at play besides “harmless” tachycardia. He told my mom to take me to urgent care as soon as possible.

They performed an EKG and they said there appeared to be nothing wrong, but sent me to the hospital where they performed an echocardiogram. Everything was structurally sound. We made appointments with my cardiologist. I didn’t get much help there.

You’re fine, Shannon. Drink more water. Add more salt to your diet. But you’re fine. Nothing’s wrong.

They did a holter monitor a few months later. They never really addressed the tachycardia, the fatigue, the chronic pain, any other symptom. They just referred back to the EKGs and echos. You’re fine, Shannon. You’re fine, you’re fine, you’re fine.

*

Seven years later, to the day, I just finished up my fourth conference with Dysautonomia International.

For four years, I have now known that I’m not “fine.” My autonomic nervous system is a disaster. Standing up, even for 10 minutes, makes me lightheaded, gives me brain fog, turns my hands bright red and makes my back feel like a twig that might snap into two.

For four years, I have had a new team of cardiologists who believe me. They run EKGs and echocardiograms and holter monitors and even when they come back “fine,” they know that the rest of me isn’t. They know that I navigate a long list of symptoms every day of my life and there’s no saying what comes next symptomatically.

For four years, my psychiatrist and therapist have been able to help me cope and learn to navigate my new normal, my new life with a chronic illness. It’s not easy, it’s not fun, but we now know what we’re dealing with. We know the card we’ve been dealt. We’re no longer in the dark.

*

I’m so grateful to be here, now, with the resources available to me so I feel less alone. To have friends, support, physicians and information that will keep me going for as long as I have this illness (very possibly the rest of my life.)

I’m had such a lovely weekend surrounded by hundreds of people with this shared experience of dysautonomia–whether it’s the patient or caregiver perspective, we’ve all gone through the journey of “WHAT IS HAPPENING” and have gotten to (or will get to) “OK, we got this.”

It’s not the same as it was seven years ago.