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
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. 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
21st Century Cures 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:
Cures are for everyone
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:
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
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.
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.
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.”
I’ve been a volunteer with Dysautonomia International since 2014 and the biggest part of our year is the annual patient conference. This is my fourth year attending the conference (four for four!) and the third year as a volunteer. I am as excited as ever because this year has some really exciting things in store.
I’m local to the area but this is the second time I’ll be staying at the hotel so I can waste less time driving and sitting in traffic and spend more time with friends, learning and gearing up for more fun at the conference. Every time I get ready to stay at the hotel and pack though, I feel like a deer in the headlights. What to bring? What to leave at home?
To save time, I sat down and figured it out. Here’s my finely tuned packing list. You can trust me, I’m a #DysConf expert.
Turquoise, because #MakeNoiseForTurquoise
Your shirts, your pants, your dresses, shoes and underwear. Even if we can’t see the turquoise you’re rocking, wear it anyway and get in the mood because this is the ultimate in Dysautonomia Awareness Weekends.
Everything you need to function. Your pills and vitamins, your compression stockings, your binders and braces, your special pillow that puts you at an incline so you can finally sleep properly. Start your personal packing list tonight and work on it every day as you use your “must haves” so you know it’s complete.
A couple of snacks
The conference will provide water and salty snacks but I like to bring my water bottle, a daily Gatorade and a few of my favorite treats so my own daily routine is consistent. (Gotta have those 2 PM pretzels.)
Comfortable clothes for conference sessions
Keep it casual and comfortable during the day—the schedule is busy so don’t sacrifice feeling well for looking high fashion all day, unless you finally unlocked the secret to cozy couture.
A light jacket or sweater
Even though it’s the height of summer in the muggy Mid-Atlantic and the hotel staff goes above and beyond making accommodations comfortable for us, the indoor temperature can fall and rise depending on the size of the room and how many people are in there. Bring a light sweater or jacket so you’re not left sweating or shivering.
An outfit that makes you feel fabulous for the awards banquet
The Saturday night awards banquet is all about dressing up and having fun. It’s cocktail attire so no need for prom dresses and tuxes–wear something that makes you feel as great as you are. If you need ideas, check out the Facebook albums of past conferences.
A swimsuit and/or workout clothes
The hotel has a pool, hot tub and fitness center for your daily exercise or if you want to relax at the end of the day.
Your favorite pajamas
There will be pajamas parties aplenty so be prepared. Extra points for bunny slippers.
Photographers will be all over the conference but they won’t be able to get every one of your selfies, pictures with new friends and every funny video of karaoke night. Take tons of photos this weekend and share them with us online with the hashtag #DysConf, we would love to see the conference through your eyes.
Extra space in your suitcase
As always, there are awesome baskets up for bid at the silent auction and a merchandise table at the vendor fair. There will be shirts, jewelry and books for sale by presenters.
A notebook & pen
I like to get a cheap notebook before the conference as my “everything” notebook for the weekend. Combined with the slides that the doctors are usually generous enough to share with conference attendees, it becomes my resource for dysautonomia information, thoughts and information. I like writing down quotes that resonate with me, possible symptoms and syndromes that I want to look into more with my team of doctors, contact information for new people I meet and even funny doodles.
Something to wind down with
The conference is busy and exciting and even though you’re going to have a blast, it’s good to take a break during the day and calm down at night with a book, some relaxing music or a TV show on a tablet or computer. Bring some ear buds, your iPad or Kindle or your favorite paperback.
If you plan on sight seeing downtown D.C., bring:
lightweight and light colored clothing
the most comfortable walking shoes you own
sunglasses, hats, sunscreen (yes, all three!)
your water bottle
And word of advice: schedule way more time than you think you’ll need, especially if you’re taking the metro. It’s going through a rough time right now.
If you forget anything, don’t panic! The hotel is located in Northern Virginia where a fundamental truth stands: you are never more than 15 minutes away from a shopping center. There are grocery stores, pharmacies, hospitals, shopping malls, all steps or mere miles away. If you’re without a car, there’s a high likelihood you can become good friends with a local at the conference or a volunteer who can give you a ride, so no worries.
So get your bags ready and we can’t wait to see you!
I have never heard a story of cancer happening to someone who deserved it, like to someone who burned down hospitals and stole millions of dollars from charities. Cancer always happens to good people. The people who take care of others. The people who clean up the messes. The people who loved the most, who sacrificed everything, who gave so much of themselves, only to have more taken by disease.
My family always thought we’d be exempt from cancer. Not because we’re bad people, but because we’ve dealt with so many other chronic health problems and cancer isn’t as widespread in our family as it is in others. My dad had a melanoma run-in but had it taken care of quickly—we thought that was our designated family cancer scare.
This May, my mom was diagnosed with endometrial cancer. Even a month later and days before surgery, we don’t know exactly how widespread it is because it’s all tied to a poorly performed surgery 12 years ago. (My parents and the surgeons know more but I asked them to spare me the details, I can’t handle knowing everything.)
I’m still struggling with how to comprehend the news because put simply, my mom is my everything.
mom & me in our happiest place, at The Colbert Report
My mom is beloved by everyone.
At her graduation from Georgetown to get her Ph.D., she was so excited that she hugged every single person on the stage, including the sign language interpreter, and then danced off stage. She was the only person to get applause (and laughter) from the entire arena.
My mom is the life of the party. And if there isn’t a party to be had, she’s happy to sit around and find something to laugh at. That’s all she wants in this life—is to laugh at something.
My mom is the type of mom that would pull my brother and me out of school to go see the first showings of the Star Wars prequels when they premiered. She’s the kind of professor who throws pizza parties at the end of the semester. She’s the kind of aunt that welcomes her nieces and nephews to live with her whenever they need a place in the area. She’s the kind of parent who wanted her kids to have dogs so despite being allergic, adopted golden retrievers for her kids and took Claritin. She’s the kind of wife whose husband laughs at every one of her jokes after 30+ years of marriage.
My mom is the kind of person who says “thank you” in the form of handwritten cards and candy. My mom is the type of person who starts dancing to whatever is playing on the radio, wherever she is, much to my chagrin sometimes. My mom is the type of person who can make friends while walking in from the parking lot. My mom has more Facebook friends than I do.
She’s the kind of mom who will go back to work, even when she isn’t healthy, so her kids can see whatever specialist they need to and go to any school they want to. She’s the kind of mom who will fight tooth and nail with her child’s school administration day and night until they agree to grant them the Section 504 they deserve, even if it takes three-and-a-half years. She’s the kind of mom who will go to 7-11 in the middle of the night to get popsicles when her kid has a fever and can’t sleep. She’s the kind of mom who has journals full of notes she takes at her kids’ doctors’ appointments over the years, she’s there for every single one of them.
She’s the kind of mom who can be her child’s best friend.
My mom is the kind of mom who is a safe space, no judgment ever, love always.
she’s the caregiver, the matriarch, the ringleader, the boss
She has been my primary caregiver for 23 years. (As well as the caregiver of my brother and my father.) And she’s damn good at it. She’s learned the ins and outs of every disease, disorder and syndrome I have. She’s tracked down the best specialists for me and has endeared herself to them so I get even better treatment. No one can say no to her.
However, anyone can be my caregiver. But only she can be my mom.
And because she’s so her, and such a mom, she does not want to relinquish her title of caregiver, even for a few days.
Even while she’s coping with cancer, while she’s preparing for surgery, she’s taking care of me. Checking in all the time. Making sure I’m OK, physically and emotionally. Letting me rant, which I tend to do a lot. Feeling my forehead to see if I’m too hot because there’s something wrong with the air conditioning. Making sure I’ve eaten and Shannon, did you really eat today or are just saying you did because you can’t remember?, and letting the dogs out so I don’t have to. Being present with me and making sure that I’m present, too.
I am so mixed with anger, helplessness and gratitude.
Anger that cancer is happening to my mom, a woman who gives so much of herself to everyone: her friends, her students, her family, especially her children.
Helplessness that there is nothing I can do besides sit by her side.
Gratitude that she has not changed, she is still my mom, she is still there for me in ways I can’t repay. That so many people love her the way she deserves and are expressing it in ways that help her feel strong. That she has good doctors she trusts and therefore I trust. That I have my own friends who are helping me feel less scared or at least more normal when I do feel scared.
There’s a chance that this surgery on Thursday can get rid of everything cancerous, and I pray to every deity that it does so she doesn’t have to endure any more of this stress and terror. All I want is for the person who has invested everything into my life and into my family to be safe, happy and healthy.
Update, July 7, 2016:
Mom had her surgery on June 23. It was complicated, it was difficult, but it went exactly as planned. There were no signs of “major cancer” but they removed everything and had to send it to lab for pathologies.
We went to her doctor for her post-op appointment and he said she was totally cancer free.
Best. News. Ever.
He told my mom that she really lucked out–he was so sure there was something there–but everything came back showing that she was in the clear. He said that she made his day because he finally got to give good news! And he rarely gets to give good news to patients.
Greatest day ever.
Thank you for love, for good feelings, for good vibes, for hope, for everything. I send all of them back, amplified times a million to people on similar journeys.
Depression seems like it should be so easy to cure.
Go to therapy.
Maybe take anti-depressants.
Exercise, eat well and hydrate.
Think happy thoughts and avoid things that make you miserable.
Boom! Depression cured. It’s so simple.
Except it’s not that simple. It’s never that simple. Because depression is a monster.
I followed this routine for 12 years with occasional periods of success. Those periods were marked by success in school, new friendships, personal projects and laughter.
But overall, I had a lot of falls in my mental health. Over and over again.
Each time I would stumble and fall, my therapist, psychiatrist and I would consult and we’d create a new plan of attack. How can we approach this depression differently? What makes this situation different? What have we learned in the past that we can use now?
But by the time I entered my 20s, I was exhausted with picking myself up after these falls. Not only was I picking myself up, I was picking up over a decade of emotional baggage that I couldn’t shed no matter what I tried.
We considered different intensive treatment options over the years that ended up not working out for a myriad of different reasons. But in the fall of 2015, my psychiatrist proposed something new.
Transcranial Magnetic Stimulation. TMS.
He pitched it as a funky magnetic device they’d put on my head, my scalp would feel tingly, and afterwards my depression would be gone. It’d take a bunch of sessions but my depression would just go away after a while. Minimal to no side effects. The only catch was that my insurance might not cover it and it cost $15,000 out of pocket.
To which my psychiatrist added with a dejected look on his face, “I really wish you had $15,000 laying around somewhere.” (Don’t we all?)
We nervously sent in a request to our insurance and went around to my doctors to see what they thought.
As we learned more about TMS it seemed like the perfect procedure for me. It got my cardiologist’s approval—he wasn’t worried about any interference with my dysautonomia. My psychiatrist was excited about it, he couldn’t wait to see how effective it was. And my therapist loved how hopeful I was. She liked the science of it, she liked the promise of it, she liked my enthusiasm about it.
It took a few weeks to get insurance approval. I met all of their requirements:
I had tried Cognitive Behavioral Therapy.
I had tried four or more different psychiatric medications (there were specific rules about what types of medications they were, but I think I was on four anti-depressants at the time I submitted my request. I was more in the 25+ range of medications.)
My psychiatrist believed I would benefit from TMS.
The psychiatrist at the TMS practice believed I was a great candidate after reviewing my records and meeting with me.
The day I was approved by insurance, I cried so many tears of joy: this was happening. This was promising. This could be life changing. We’d start right after the new year.
TMS is the most bizarre medical procedure I’ve ever had.
this creepy chair will make you not depressed!
You go into a room and get into a very interesting looking chair.
They put a weird paper crown around your temple that velcros into the machine to hold your head in place. (I always thought it would be a really good base for a flower crown and considered taking some extras home and using it as such.) You put ear plugs in.
They raise the chair up and lean you back.
They put your head in place and align you with weird protractor looking tools that are attached to the chair.
They bring down the coil/magnet and place it against your head.
They bring down the counter pressure place it against the opposite side of your head to hold you in place and to make sure your neck doesn’t hurt from the weight of the magnet.
They turn on the machine.
It feels like a woodpecker is trying to get through your skull into your brain at first, then you get used to it. But nothing is touching your skull. It’s just magnetic pulses. It’s uncomfortable but not painful.
For my depression treatments, it’s five seconds of tapping followed by 25 seconds of peace (repeat for about 40 minutes) on my left side of the head. For my anxiety treatments, it’s a constant tapping on my right side of the head. (Of course, everything will vary by patient, by doctor, by machine, by facility.)
this machine doesn’t lend itself to taking good selfies, believe me, I tried.
Half way into my treatments, I met with my TMS psychiatrist and we decided to add in a second treatment (called bilateral treatments) every day for anxiety, because my symptoms of depression were getting better but my symptoms of anxiety were not. So every day, I had 40 minutes of !dundundundundundundundundun! followed by a break and repeat on the left side of my head and 40 minutes of a slow, !tap, tap, tap, tap! on the right side of my head.
(Above is a recording of a TMS treatment on the left side. It sounds like a machine gun, but it’s all magnetic pulses. No pain, just strange tapping feelings.)
(Above is my hand during one of my bilateral treatments on my right side for anxiety. My hands twitched a highly abnormal amount.)
I got to watch TV or listen to music during my treatments. I became friends with all of the technicians who would check in on me, ask me how I was, check to see that I wasn’t feeling too paralyzed while strapped into the chair and the machine.
I had almost all of my appointments (36 of them!) at the same time every day and fell into a comfortable routine. I’d watch reruns of Saturday Night Live on Vh1 and had a habit of laughing a little too hard during Weekend Update and would occasionally disrupt my placement in the machine—the machine would recognize that my head was no longer in the right place, sound an alarm, and the technicians would come back in, fix the positioning, and watch the rest of the segment with me because clearly, it was hilarious and worth watching.
TMS lifted the depression.
I started getting up a little earlier. I started making plans and schedules. I thought about things I wanted to do and took the steps to do them.
I was approaching problems exactly the way my therapist and I would practice in therapy. The negative voice that lived in my head was spending less time there. And when I was anxious, I had more energy to remedy the anxiety.
These positive steps started happening only two weeks into the six weeks of treatment. By the end of treatment, I felt better than ever. I felt like I was learning to walk on new legs—still nervous about this new life in recovery from depression, a little apprehensive about what post-depression life would be like, but ready.
At my final appointment, my psychiatrist in charge of my TMS gave me a few statistics to keep in mind.
Due to the severity of my depression and how long I’d been living with it, I had a 70% chance of relapsing.
But because of how successful TMS had been, I had a 90% chance of it working again if I got a second round of treatment.
I took those numbers to heart, repeating that 90% statistic every time I got nervous about relapse. I was high risk, but it was almost definite that I could get back to that amazing state of recovery again. We now knew what my brain required to get out of depression: it was TMS.
A month after TMS, (this March) I relapsed.
I was devastated. I was embarrassed, because it was so soon. I felt ashamed that it happened so quickly, as though it were somehow my fault. (I have since worked things out in therapy: obviously, it’s not my fault.)
I met with all of my doctors and we agreed that I should get back into TMS. Everyone agreed that TMS gave me relief like I’d never felt in 13 years and the severity of my depression just needs more intensive treatment. I needed a second round of treatment.
We sent the request into my insurance company and are currently in a battle with the appeals process because they deem it “medically unnecessary.” My insurance company is the only thing getting in the way of me and a cure for depression—because like most families, mine does not have $15,000 laying around to pay for this treatment. We use our money for things like food. And shelter. And paying for medical insurance that later screws us over.
I’m going to hold on to hope that the appeal will work out because I want to live life free of depression for longer than weeks at a time. I have an idea what I can be beyond my depression and it’s pretty great. I want to be be that productive, be that worry free, feel that light and think that clearly. I know that I deserve that. And somehow, it’s magnetic pulses on my brain that can give me that.
If you have any questions about TMS, please feel free to reach out, I’m happy to talk about my experience with it. And if you have any science based questions, hit up these resources: