My Life as a Puddle

Creating hyperhidrosis hope and awareness one drop at a time

Hyperhidrosis Takes Center Stage at PFDD

Two weeks ago, I was a featured panelist speaker at the Patient-Focused Drug Development Meeting (PFDD) for Hyperhidrosis in Washington, D.C.  I am honored to be part of this landmark event. There were two panels: impact of hyperhidrosis and treatment of hyperhidrosis. I was on the impact panel and the first one to speak.

Watch my Facebook Live video I recorded minutes before the meeting began. Nothing like locking yourself in the nursing mothers’ section of the bathroom after frantically running your hands under cold water to help stop the sweating, even if it was only temporary. I hardly remember recording the video, as I was getting nervous. But all it takes is that 20 seconds of courage I talked about before. Courage is a muscle that can be strengthened, and each time you do something outside of your comfort zone, you get stronger. Maybe a little sweatier as you do it, but stronger nonetheless.

My PFDD Story

Here is the story I shared live at the meeting.

My name is Maria Thomas. Six years ago I launched my blog, My Life As A Puddle. But my story begins back in second grade. That’s the earliest I remember having an excessive sweating problem. Wiping my palms on my Catholic school uniform. Using my sleeves to hide the sweat dripping from my fingertips. Watching the edges curl up on the Big Chief tablet on which I was practicing my cursive handwriting was a scene for the books. Never wearing sandals because my feet would slip and slide all over them. Looking around to see if other kids had sweaty feet and avoided the same types of shoes I did. Remember jelly shoes? I could only wear mine with socks, and that made me feel like a dork. I didn’t want to stand out.

As humans, we are wired for touch. What happens to us psychologically when we feel unworthy of it?

Hyperhidrosis is rooted in shame. Because we can’t control our sweating, we come up with unique ways to hide it. Sweating makes us feel out of control, and many of us turn inward to wrestle with our sweat demons.

I was 36 years old before I had my first pedicure. My best friend dragged me to the salon and made me do it to get me outside of my comfort zone. When the person massaging my feet leaned over to grab the bottle of nail polish, she gently rested her hand on the top of my foot. I almost cried over such a simple gesture, because for all those years I thought a pedicure was something I could never do. I was ashamed to be touched and worried they’d discover my secret.

In an effort to clamp down on the never-ending sweaty commentary that runs rampant in my head, I developed a few life hacks for the biggest day of my life—my wedding. I was excited for my bridal debut, yet also anxious that I’d ruin my satin dress. I wore boring white ballet flats with no-show socks because I was afraid I’d break an ankle if I wore slippery high-heeled shoes. This is why people with hyperhidrosis feel like they can’t buy nice clothing and shoes. We may ruin them with sweat stains, so why bother?

And what about my wedding bouquet? About a month before my big day, I spotted a surgical towel in the exam room of my doctor’s office; it just happened to be the exact color of my wedding flowers. As I soaked through the paper on the exam table during my appointment, I bashfully asked my doctor if I could have the towel. Thank God for my crafty mother-in-law.  She hand-sewed it around the handle of my bouquet. When I handed it off to my man of honor to recite my vows, it was still drenched in sweat.

towel-wrapped wedding bouquet

My hyperhidrosis-friendly wedding bouquet

A few years later, many of my friends were having babies. Driving to the hospital, my palms gripping the fabric-covered steering wheel, I tried to think of ways I could hide my sweating while still being able to hold these little bundles of joy. I was absolutely petrified that I would get them soaking wet, or worse, lose my grip and drop them. But my friends didn’t care about my sweat. They just gave me a kitchen towel to hold when I needed it.

Me holding a friend’s baby and hoping to God my sweaty hands won’t cause me to drop him.

I have an autoimmune disease called ulcerative colitis. Last year over Easter weekend, I was hospitalized because of it. When my doctor told me I had exhausted all other treatment options and would have to self-inject a biologic medication, my first thought was, How can I stab a needle into myself with sweaty hands? If my hands were to slip, I could lose a precious dose of this life-saving medication. So not only is hyperhidrosis socially, mentally and emotionally debilitating, it’s a downright safety issue for me.

hyperhidrosis and syringe safety

When you’re afraid to inject yourself with life-saving medication for fear the syringe will slip, that’s a major hyperhidrosis safety problem.

Earlier this year, I tried on two separate occasions to qualify for and enroll in a clinical trial for an underarm treatment. Wearing a paper thin gown that was definitely not sweat-friendly, I was placed in a cold exam room for 30 minutes to acclimate. Then, my underarm sweat was collected on cotton pads and weighed. The first numbers came back within range, but sadly, all the times afterward did not. Then the protocol was changed, and I had a chance to re-qualify. Never have I attempted to will my body into sweating before, but in that exam room on that day, I was trying my hardest. Hyperhidrosis is not constant; it is episodic. I guarantee that I would qualify for this trial today if you were to come up here and measure my sweaty underarms right now.

We all want to be seen, to know that we matter. It takes a great deal of courage to face life with hyperhidrosis. Please don’t be disgusted when you shake our hand. Instead, admire us for having the courage to do so in what you might know as a dry world.

When an organization like the International Hyperhidrosis Society comes along and empowers us, suddenly doors like this meeting open that we never thought we could knock on in the first place. The IHhS opens doors so that we can get a grip on our future. I ask you today to please walk through these open doors to bring us better clinical trials, better treatment options, and better lives.

When it comes to drug development for hyperhidrosis, think of it this way. The IHhS built the car. And we as the patients are buckled in and ready for the journey. But it is YOU –  pharmaceutical companies and industry innovators – who hold the keys to take us where we need to go.

Thank you.

PFDD Reflections

Stay tuned for my reflections on the hyperhidrosis PFDD. There were so many moving parts and details that made this event come to life. I can’t wait to share them with you, as well as a few stories about some of the people I met. (Don’t worry – I will respect your privacy and not use names or photos without your permission.)

Lisa J. Pieretti—My Hero

I waited six years to do this.

As part of my attendance at the Patient-Focused Drug Development Meeting for Hyperhidrosis, I wanted to find a way to honor the person who has altered the trajectory of my life. That person is Lisa J. Pieretti, Executive Director and Co-Founder of the International Hyperhidrosis Society (IHhS).

For months, I had been thinking of what to do. I scoured the Internet for a glass-blown award that resembles a droplet of sweat, which I then had engraved. And because the best way I know how to express myself is through the written word, I decided to write a speech for her. Multiple handwritten drafts appeared in my journal, along with one-liners to include that woke me up in the middle of the night begging to be written down or typed into my phone. Several times during my commute to work, I would get teary-eyed envisioning the moment I would surprise Lisa with this award. Yep, I’m a total sap.

sweat droplet award

The award I had made to honor Lisa.

If someone has made a difference in your life, TELL THEM. This is what life is about—creating moments and memories. I hate public speaking; it makes me sweat even worse than I already do. But I pushed through it because this moment wasn’t about me. Here’s the video below (or watch it on YouTube) of me delivering my speech to Lisa. I was later told that most people in the room were crying, including Dr. Glaser whom I briefly mention.

My Speech

Here’s the written version of my speech.

They say our lives can change in a moment. Mine changed in April of 2011. The scene? The Brown Palace Hotel in Denver, where this woman with an adorable Pennsylvania accent stood behind a table and welcomed me to a meeting that was full of sweaty people just like me. She even shook my hand.

As I lay down on the table to receive 155 injections in my hands, Lisa locked eyes with me and told me not to worry. Dermatologists gathered around me, and for the first time in my life I wasn’t ashamed of my hyperhidrosis. Dr. Glaser reached over and patted my ankle, which was dripping wet. I could’ve cried when she did that. The act of being touched by strangers who knew exactly what I was going through was incredibly validating for me.

While I’ve always been a writer, on that day I walked in as a patient and left as a blogger with the Universe nudging me to tell my sweaty story. My blog My Life as a Puddle was born that day in Denver. Today, I stand in awe at where my sweaty stories have taken me. My intention is to create hyperhidrosis hope and awareness one drop at a time, and it’s all Lisa’s fault.

Maya Angelou once said, “I think a hero is any person really intent on making this a better place for all people.”

Lisa, you are my hero. You walk through the fire for us when our own feet are too slippery to make the trek. When our hands are too sweaty to type on our keyboards, you are the one pecking away at the keys on our behalf. So I want to say thank you, Lisa, and give you the recognition that you deserve.

Thank you for pounding the pavement when our feet are too sweaty to put on shoes. Thank you for opening doors we’d never be able to get a grip on without you. Thank you for staying up way past your bedtime and fighting for better research and treatments.

Your legacy is every single person you’ve touched. Never doubt that one committed soul can change the world. Indeed, you have.

I’m sure I speak for all of us when I say, I love you, Lisa. Our world is a better place because you’re in it. You have changed my life. On the days when you may doubt your greatness, go find one of our beloved trees. Hug it, and then look up at the leaves. Because of the roots you have planted, we are able to stretch our sweaty branches and be open to drier possibilities.

You carry the torch for us. May that flame never go out.

Maria Thomas and Lisa J. Pieretti

Me and Lisa, post-speech and tears. I’m so happy I was able to do this for her.

Copyright © 2017 My Life as a Puddle

 

Wheels Up!

wheels up

Image Credit: Eva Darron

Leaving on a Jet Plane

I’m leaving on a jet plane at o’dark thirty and headed to Washington, DC! Why? The International Hyperhidrosis Society (IHhS) invited me. I am honored to be a featured panelist speaker at the Patient-Focused Drug Development Meeting for Hyperhidrosis. I will be speaking to members of the U.S. Food and Drug Administration (FDA), treatment developers and industry innovators. Plus, I will get to meet more of you – my sweaty tribe.

I will be speaking about the impact of hyperhidrosis, and while I’m a bit nervous about it, I’d say I’m more excited as well as humbled by the opportunity. I never imagined I would be blogging about hyperhidrosis, let alone traveling to my nation’s capital to share my story with those who can make the biggest strides in advancing hyperhidrosis treatment options and clinical trials.

Courage, Dear Ones

I’m doing this for so many reasons. Partly to prove to myself that I can do anything I set my mind to. Partly to give a voice to those of you who are too ashamed, embarrassed or scared to speak up . It’s time to end the stigma about hyperhidrosis. The more we speak up, the more reason people have to listen and be compelled to advance toward a cure.

Six years ago, it took a great deal of courage to launch this blog. What would you do if you had courage? All it really takes is about 20 seconds’ worth, and it gets easier after that. Courage is a muscle that can be strengthened. Step by step, inch by inch, you can grow despite having hyperhidrosis. I know it’s hard. I know it’s wet. Been there, done that. STILL doing it.

Help Me Help You

So know that I will be carrying your voices with me when I stand up on that stage. Since I’m doing this for you, there’s a way you can help me, too.

1) Send in your comments to the IHhS about the meeting (link above).

2) If you are one of the silent followers/readers of my blog, take a leap of faith and subscribe.

3) If you’re on Facebook, like my page. I’m also on Instagram. Start liking and commenting on my posts. These are simple things that help me grow my message. All it takes is those 20 seconds of courage.

There is freedom in talking about hyperhidrosis. It’s time to spread your wings.

There is freedom waiting for you on the breezes of the sky, and you ask “What if I fall?” Oh but my darling, what if you fly? ~ Erin Hanson

A special thank you to Dermira, RA Fischer, Brickell Biotech, Hidrex, and private donors who made this landmark initiative possible and sponsored me on this trip.

I Have a Logo!

After writing this blog for six years, I finally decided it was time to step it up and get a logo. I’ve had an idea for one for awhile, so allow me to explain the design. Oprah always asks before beginning a project or a business meeting, “What is the intention?” Wise advice I myself try to follow when approaching anything new.

My intention with this blog is to create hyperhidrosis hope and awareness one drop at a time.

So when I started thinking about a visual representation for what it is I do, the image of hands holding a droplet of water came to mind. The hands are pointed up and out as my offering to the world. Each time I write or speak about hyperhidrosis I ask myself, How can I serve? By sharing my sweaty story, it creates a ripple effect out into the world, just like skipping a stone across a lake. When we’re brave enough to tell our story, the ripple effects may touch people we’ll never even know.

It is my hope that I will know more of you very soon. Stay tuned for my next blog post about how I plan to do that. It’s super exciting, I promise! Until then, here is my logo debut. Drum roll, please…

 

My Life as a Puddle logo

Ta-da! I finally have a logo.

WEGOHealth Awards: From Jane

Judging is now underway for the 2017 WEGOHealth Awards. As you may know, I was nominated in two categories: Best in Show: Blog and Best Team Performance.  Over the next several posts, I would like to share with you the kind words from those who nominated me. It means a lot that these people took the time to tell WEGOHealth about the important work I am doing to help those with hyperhidrosis know they are not alone.

Here is the nomination from Jane. Thank you Jane!

2017 WEGOHealth Awards My Life as a Puddle

Image Credit: Geetanjal Khanna

WEGOHealth Awards: From Bill

Judging is now underway for the 2017 WEGOHealth Awards. As you may know, I was nominated in two categories: Best in Show: Blog and Best Team Performance.  Over the next several posts, I would like to share with you the kind words from those who nominated me. It means a lot that these people took the time to tell WEGOHealth about the important work I am doing to help those with hyperhidrosis know they are not alone.

Here is the nomination from Bill. Thank you Bill!

2017 WEGOHealth Awards My Life as a Puddle

Image Credit: Geetanjal Khanna

WEGOHealth Awards: From Abigail

Judging is now underway for the 2017 WEGOHealth Awards. As you may know, I was nominated in two categories: Best in Show: Blog and Best Team Performance.  Over the next several posts, I would like to share with you the kind words from those who nominated me. It means a lot that these people took the time to tell WEGOHealth about the important work I am doing to help those with hyperhidrosis know they are not alone.

Here is the nomination from Abigail. Thank you Abigail!

2017 WEGO Health Awards My Life as a Puddle

Image Credit: Geetanjal Khanna

WEGOHealth Awards: From Charlotte

Judging is now underway for the 2017 WEGOHealth Awards. As you may know, I was nominated in two categories: Best in Show: Blog and Best Team Performance.  Over the next several posts, I would like to share with you the kind words from those who nominated me. It means a lot that these people took the time to tell WEGOHealth about the important work I am doing to help those with hyperhidrosis know they are not alone.

Here is the nomination from Charlotte. Thank you Charlotte!

2017 WEGO Health Awards My Life as a Puddle

Image Credit: Geetanjal Khanna

WEGOHealth Awards: From Linda

Judging is now underway for the 2017 WEGOHealth Awards. As you may know, I was nominated in two categories: Best in Show: Blog and Best Team Performance.  Over the next several posts, I would like to share with you the kind words from those who nominated me. It means a lot that these people took the time to tell WEGOHealth about the important work I am doing to help those with hyperhidrosis know they are not alone.

Here is the nomination from Linda. Thank you Linda!

2017 WEGO Health Awards My Life as a Puddle

Image Credit: Geetanjal Khanna

Just Stay

When the Universe Whispers, Answer the Call

This post has been scratching at my writerly brain. I feel the universe nudging me. As self-proclaimed “possibilitarian” artist Kelly Rae Roberts says, “Your beautifully messy complicated story matters. Tell it.”

I’m absolutely terrified to post this, but secrets make you sick. It’s time I tell mine. I hope it might help you or someone you know. My intention is not to glorify this topic, nor is it to overshadow anyone who might be in the midst of the aftermath of tragedy. My intention is to spread hope and awareness, as World Suicide Prevention Day is September 10.

The Perfect Storm

The gun wasn’t pointed at my head when it went off.

I didn’t want to die. I just wanted it all to stop.

Spring 2016. I found myself in the midst of a perfect storm. I just wanted it all to end.

I was living in a new city that – for my highly sensitive soul – was overcrowded and noisy, with horrible traffic and hot, humid weather. My new job had me in the car most days, navigating a city with which I was unfamiliar. Each night, I’d arrive home in tears. No family or friends nearby, and everything was coming at me likes darts to a board.

The radio stopped working in my car. My first reaction was not to get it fixed, but that there was absolutely no way I could be left alone with my racing thoughts.

What if my phone died? How would I get a hold of people?

The train chugging past my apartment every single night, its horn blaring a warning signal. It was so loud. I couldn’t bear it.

Driving gave me anxiety. When I looked down the street to turn, I couldn’t tell which way the street went. Was it one-way or two-way traffic?

What was happening to my brain?

I also was dealing with a chronic illness, an autoimmune condition called ulcerative colitis (UC). My symptoms had returned in a fitful, screaming rage, hijacking my already delicate body and psyche.

The MRI machine. The pulsing rotations across my body. I found myself laying there thinking die, die, die in tune with the pulsating rhythm of the scan.

The night I finally decided it was time to go to the emergency room, I had left a trail of blood and mucous on the bathroom floor, reaching all the way from the toilet around the corner to the bedroom. I could barely walk.

I spent Easter weekend in the hospital, pissed off at God. Too weak to shower by myself, my husband guided me and my squeaky IV cart to the cold bathroom. As the soap slid down my bony frame, I wanted my illness and racing thoughts to just disappear down the drain forever.

I wanted the pain and the sadness and the anxiety to go away and never come back. My head was not their home. It was time to evict.

It was all just too much.

The Gut and the Brain Are Linked

You may have heard about the link between gut health and brain health. That’s a real thing. My body wasn’t manufacturing enough serotonin to feed my brain the happy chemicals it needed in order to function.

I became a shell of myself, monotone when I spoke, uninterested in everything, and barely able to move my then underweight and anemic body from the couch. I was terrified to take my dogs outside for fear I’d have an accident right in the middle of the grass.

I could barely sleep. My brain wouldn’t shut up. It didn’t matter what I ate—it all went right through me.  My brain chemicals were off; I wasn’t getting enough nutrients through my diet. My mind and body as I knew them were fading away.

Do the Work

After the gun went off and the bullet shot through the window, I knew I needed help. I realized this was not what I was made for.

I wanted to stay, but how?

I barely remember the plane ride home. I spent the night at my parents’ house, begging them for just one night in my old room. The next morning, I admitted myself for a 72-hour hold in a mental health facility. My journey back was beginning.

There are relapse statistics for those who attempt suicide and live to tell about it. But I am not a statistic. See, I was always the one who had her shit together. I never saw this coming on my life’s path. It was a shock to me, too. But you know what?

Life is messy. And sometimes we’re not okay. It’s okay to say you’re not okay. I was totally jacked up by the time I came home.

With support from my husband, family, friends and licensed mental health professionals, I found the glimpse of light at the end of the tunnel. I was able to walk slowly and tentatively back into the light. I was on a cocktail of medications for about three months and slowly tapered down to one medication. I completed one year of individual counseling and 15 months of psychiatric therapy and am now medication-free. For me, I struggled with situational depression, not chronic or clinical depression.

Just Stay

There was help for me, and there is help for you. Just stay.

You don’t have to get the words right. Just speak. Use your words to breathe life into a conversation that must be had.

End the stigma.

I promise it gets better.

If you would’ve told me last year when I was feeling so horrible that I’d be a Who’s Next in Education winner, an O, The Oprah Magazine Insider, a radio show guest, and be interviewed by Family Circle magazine about hyperhidrosis, I would’ve scoffed in your face.

The universe conspires with those who believe in the beauty of their dreams. Don’t give up.

I have work to do, and so do you. We can do it. Together.  Just stay. You matter.

Mental Health & Suicide Resources

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741741.

 

*Note to my readers: this essay is in no way related to my hyperhidrosis condition.

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