My Secret Isn’t So Secret Anymore

For Hyperhidrosis Awareness Month this year, I had the amazing opportunity to share my story of living with Hh on a larger scale. The International Hyperhidrosis Society approached me earlier this year to ask if I would consider being a part of their Awareness Month campaign and tell my #HhStory. Although I am usually pretty secret about my condition, I decided to take the leap and trust that a video like this could help others living with Hh and spread awareness and understanding. It’s always important to me to portray Hh as NOT just a little sweat. The video really captures the struggles I’ve faced and the obstacles I’ve had to overcome to get through each and every day. My story is just one of many from millions of other Hh sufferers all over the world. You are not alone. We are in this together.

So, without further ado, here’s my story.

So, I guess my secret isn’t so secret anymore…and that’s okay.

Thank you to the International Hyperhidrosis Society for this opportunity and to my husband and mom who joined me to share their experiences of having someone with Hh in their lives.

To all my family and friends – thank you for your never-ending love and support ❤

Caryn

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November is Hyperhidrosis Awareness Month

I live with Hyperhidrosis in a private way. It is my secret life. My palmar and plantar Hyperhidrosis can be invisible to others. I’ve also become so good at hiding it that there’s a chance that the people I interact with on a daily basis might never even know I have this condition.

I have lived with Hyperhidrosis for 31 years. I am used to this life. But sometimes it doesn’t seem to get any easier. As I sit and write this, I am fanning my hands and soaking the sweat up with paper towels. I am trying to breathe through my discomfort. I am alone in my room, not anxious or nervous about anything, and I’m still struggling just being me.

One of my most successful coping techniques for Hyperhidrosis has been writing about my experiences on this blog. It has helped tremendously getting my thoughts and frustrations out about living with this condition. Another way I cope with Hyperhidrosis, is to tell people in my life about it.

November is Hyperhidrosis Awareness month. It is our second annual month and I am so thankful that this condition has reached the point to have an official month. It is a very big accomplishment in the world of Hyperhidrosis and it’s an exciting time to be a part of it.

I encourage us all living with Hyperhidrosis to get out there and tell someone about this condition and what it means to have it. Not only will telling someone about Hyperhidrosis spread awareness and understanding, it could give you the relief and support you need. For me, telling certain people about my Hyperhidrosis has made my quality of life better.

One really impactful example I have for you happened just last week.

For some backstory, a few years ago, I decided to start mentioning my Hyperhidrosis in my job interviews. I was at the point in my life when I was starting to switch careers and go into Special Education. Hyperhidrosis was my biggest inspiration for my decision, and as scary as it was to talk about, I found it fitting to explain why my life experience has led me to this point.

So, my current boss has known about my Hyperhidrosis since the first day I met her. Since starting this job a year and a half ago, little by little, I explained what living with this condition means to me. I’m thankful I told her about my condition right away because it allowed me to be myself.

I work from home now, which has been a huge help in managing my own room temperature and always having a fan at the ready. But this fall, I have been traveling to the office more frequently. Last week while I was in the office, I was part of a group meeting. The room was very warm and I knew immediately that I was going to have an issue with my hands sweating. I had a paper towel with me, but I was worried it was not going to be enough. At any other job, I would have just dealt with it and melted away, not being able to focus on the meeting at all. I’ve had those meetings where all I could concentrate on was my sweat and how uncomfortable I was – and how nervous I was for my secret to be discovered.

My boss was part of this meeting and I asked if I could bring a fan in to help with my Hyperhidrosis. She didn’t question or give it a second thought. I brought the fan in and positioned it at my hands. I don’t think that anyone else in the meeting thought it was weird or different. It may seem small, but this fan helped my hands stop sweating and allowed me to focus on the meeting. It made me feel normal.

It’s funny how something so small like this can be so impactful to me. I think of it and smile even now. One person who knew about my Hyperhidrosis made me feel comfortable enough to bring in an accommodation for myself – something I knew would help me. Telling people about my Hyperhidrosis has made my life better.

That is just one example of how Hyperhidrosis awareness has helped me personally. I believe that Hyperhidrosis awareness and understanding will make the world a better place for us. We are all in this together. This month, I encourage you to tell someone about your Hyperhidrosis journey. Be strong and have courage. I know you can do it. I can’t wait to hear your stories!

Happy Hyperhidrosis Awareness Month,

Caryn

Fingerprinting Nightmares

A few months ago, I was driving the winding roads of Massachusetts to get fingerprinted with the Department of Education. I was already fingerprinted in New York state, but I was starting an internship in western MA this past summer and they needed my prints as well.

It took about an hour and a half to drive to the building where they were to take my prints digitally. I traveled with my husband for support because I was still practicing my driving skills after a hiatus of not driving for almost 9 years living in NYC.

We arrived and it was pouring rain. It was pretty chilly, too, if I remember correctly. My body temperature is better regulated in the colder weather.

The man taking my prints started with my right hand. Everything went pretty smooth with that. But as we switched to my left hand, the warmer room temperature caught up with me and my hands started profusely sweating. It was incredibly uncomfortable as the man had to hold my hand and press each finger down on the glass screen.

Each time one of my fingerprints was captured by the screen, it registered immediately if it was rejected or accepted. It was all downhill from here at this point.

Reject. Reject. Reject. Reject.

On and on, each finger was rejected, tried again, and rejected again. It was terrible. Uncomfortable and embarrassing.

I desperately asked the man if I could go to the restroom to wash my hands or take a break for a minute so that I could try to get my hands to dry up even for a small amount of time. He wouldn’t let me leave. I’m not sure if that is because of security or something, but there is nothing I could have done. He kept saying it was okay, but it clearly wasn’t okay. My prints were rejecting for about 10 minutes and my hands were just getting worse.

Finally, he gave up and told me that it was likely I’d have to come back to try again another day. My heart sank. I wasn’t local and it would be challenging for me to come back again any time soon. Even if I did come back to try again, there’s a good chance I’d have the same sweaty issues.

I left the fingerprinting room to leave with my husband, but I just broke down crying in the lobby. It wasn’t fair. Why can’t I do something as easy as getting fingerprinted? If you have fingers, you should be able to have fingerprints read. Why can’t I just be normal?

I was very upset that day to say the least. It all ended up okay, I guess. I never got a call back from them, so I guess they somehow accepted my fingerprints and got enough from my right hand? I’m not sure, but I’m not in a rush to find out what happened.

This is not the first time I’ve had trouble with having my fingerprints read. I’ve also had trouble with the ink fingerprinting and the digital fingerprint entry to amusement parks. It’s not easy and more than once has ended up in me crying from embarrassment.

My plea is for people designing digital fingerprinting machines to take sweat into consideration. This is a huge issue for people with HH and even people with slightly clammy hands! Can we put our heads together to make these machines work for us?

Caryn

Don’t Let Go

This morning, as I was starting my day in New York City, an older woman desperately called for my help. She used a cane and told me she felt dizzy. She needed help calling a cab and asked me to hold her hand. Even though it is October in New York City, the weather was feeling pretty warm. My hand was already very, very sweaty. Even so, I took hold of this woman’s hand and walked her down the street to call her a cab. Throughout our time together she told me not to let go of her hand even for one second. I could feel her hand shaking in mine. I wasn’t going to let my sweat interfere with helping her to a cab safely. I held her hand and didn’t let go. The universe works in mysterious ways. Of all the people on the busy NYC street, she chose me to help. It is significant to me because my hand was able to help someone today, sweat and all.

Caryn

Wedding Shoes

My wedding day – April 16, 2016.

It was the best day of my life, but Hyperhidrosis almost made it a disaster.

Everything was in place. Our timeline was set and our vows were written. Our friends and family were gathered. We were ready to celebrate the start of our lives as husband and wife.

Our colors were yellow and gray and the decor was daffodil themed, my favorite flower. It was perfect for a spring wedding. We took a lot of inspiration from one of our favorite books/movies, Big Fish, where daffodils play a big role. Even in its rendition of a short lived musical on Broadway, the lyrics of one of the songs:

Let’s build a world of daffodils
That never fades and never dies
I see the answer in your eyes
You’ll be the bride
I’ll be the groom
A daffodil in every room

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My dress was everything I had dreamed of; long white lace with a low V back. I wore little blue earrings as my “something blue.” I even found the cutest yellow and white lace open toe shoes…

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Wait. Open toe shoes!? What was I thinking?

If you’ve read some of my previous entries, you may remember that I gave up open toe shoes awhile ago. My feet would sweat, then my shoes wouldn’t fit properly, and I would risk slipping out of them.

How did I forget all about this during my wedding planning? I thought they were the perfect shoe and my mind was set.

In preparation for our big day, I was all up to date on my iontophoresis treatments for my hands. My hands were doing great and I had the extra benefit of the colder weather to stunt my excessive palmar sweating. But I didn’t do anything for my feet. I just didn’t think through what could happen.

Thankfully, I had no issues for our outdoor ceremony. It was in the middle of chilly April in upstate NY. We made it through our emotional first look and our beautiful ceremony, tears and all.

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Afterwards, at our indoor reception, we went immediately into our first dance which we choreographed ourselves. It was flawless. My body temperature was still on the cooler side from being outdoors, so I didn’t have issues with sweat when we were dancing. But as soon as we finished, that’s when my body temperature caught up with me.

My feet started to sweat. This could be a problem. 

Francis and I sat at our sweetheart table for dinner. I called a waitress over to bring me a stack of paper towels. She asked if there was a spill and was concerned. I said, “No, I just sweat a lot.”

And so throughout dinner, I had my feet under the table resting on paper towels. Thankfully, there was a long tablecloth that hid my feet from the guests. It was pretty embarrassing though, and very upsetting for me. Would I be stuck at my table the whole night? I shouldn’t have to deal with HH on my wedding day.

Right after dinner was our father/daughter dance. I went up to my Dad right before and told him that I could barely walk in my shoes and to be very gentle when dancing and twirling. We made it through beautifully, but I was so nervous. My feet barely left the ground as I slid around the floor. I’m thankful that my Dad understood the situation and he didn’t make a big deal out of it.

I was really worried about being able to enjoy the rest of our reception. I could barely walk in my shoes, let alone dance. I could never go barefoot as that would be even more dangerous and slippery. I felt like I was going to be stuck at my table all night with my feet on paper towels.

I told my sister who was also my Maid of Honor what was going on. As the problem solver that she is, she suggested, “How about putting the paper towels in your shoes?”

What a brilliant idea! I had a long enough dress that would cover my shoes, so no one would really see a paper towel sticking out of the open toe.

I put the paper towels in my shoes and it was the best thing I did. It allowed the sweat to soak up and I wasn’t slipping out of my shoes anymore. I was able to enjoy the rest of our reception and dance the night away!

I am happy that I remember our wedding day as the perfect day. I am thankful for my sister’s help in remedying my situation and making sure I had a good time. Although I’ll never forget this sweaty memory, there are happier memories that come to mind when I think of that day – marrying my soul mate and sharing the day with everyone we love. We will always have our perfect day.

Caryn

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I’ve missed you!

A lot can happen in 2 ½ years.

I missed being a part of the HH community in such a big way with my blog. I am happy to say hello again and let you know what’s been going on since my last entry:

Personal life

  • I got married!
  • Visited London
  • Moved from Manhattan to Queens then again to upstate NY
  • Visited California for the first time
  • Ran my 5th half marathon

Professional achievements

  • Continued my studies for my Master’s degree in Special Education with a Vision Impairment focus
  • Learned how to read and write in 3 codes of Braille (literary braille, braille music, Nemeth code)
  • Started teaching music to students who are blind or have a vision impairment
  • Got a new full time job working for an amazing charity helping people all over the world with vision impairment
  • Completed three internships in Special Ed/Vision Impairment

Hyperhidrosis awareness

  • Told my HH story at the Patient-Focused Drug Development meeting (PFDD) on hyperhidrosis hosted by the International Hyperhidrosis Society in Washington D.C.
  • Wrote about HH for SELF
  • Contributed feedback for the development of a product to help palmar hyperhidrosis

It’s been a pretty busy couple of years for sure. Having a full time job, part time school, and part time music and teaching has kept me involved, but I am happier than ever. I feel lucky to have so many opportunities to combine both my passions for music and for helping people.

A lot has happened, but Hyperhidrosis has always been my constant. I’ve been on and off of iontophoresis treatments (currently off). Summer is coming to an end and I’m looking forward to cooler weather to dry me up a bit. I have had many issues with HH this year and still consistently feel uncomfortable in my skin.

The other day when I was in NYC for work and traveling in the hot subway system, I had a thought that kind of made me feel better. At least it made me laugh. I’m definitely a perfectionist and enjoy when I do things well. So, I thought about HH in a positive way. Maybe I can tell people that I’m just really great at sweating. I exceed the average person at it for sure.

I started a draft of this entry last week because of my increasing longing for getting back into the HH community. Little did I know, my SELF article was circulated on SnapChat last weekend. I don’t use SnapChat, so I wouldn’t have known if it wasn’t for my cousin who sent me a screenshot.

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This was very exciting and couldn’t have been better timing. It truly is time for me to start connecting with you all again and I am so sorry for my hiatus while I focused on school. I will finally graduate this December after four years of pursuing my degree in Special Education.

Thank you to everyone who sent me emails after seeing my article on SnapChat this week. I am so grateful that you reached out to share a little of your HH story with me.

Over the next few entries, I plan to elaborate on everything that’s been going on with me for the past 2 ½ years. For now, I just want to say hello again and I look forward to sharing our stories together. Is everyone gearing up for Hyperhidrosis Awareness month this November? I’d love to hear about your ideas to spread awareness. Together, we can make change.

It’s good to be back!

Caryn

 

Hello!

Happy belated New Year! I apologize for the large gap in my entries. Life is as hectic as always and I’m here now to catch you up on my most recent adventures.

In December and January, I traveled to China with an orchestra to tour! It was an amazing, once-in-a-life-time experience filled with culture, excitement, and good music.

In preparation for the trip, I think everyone was stressed out. There was a lot to do in a short period of time. We needed to fill out a lot of paperwork, go to the Chinese consulate to get a Chinese Visa, and do extensive preparation of music – not to mention pack for a 3 week tour for several different climates.

I had additional stress because I felt like I needed to also prepare my body. I needed to start my iontophoresis treatments again so that my hands wouldn’t bother me playing 15 concerts in 3 weeks over in China.

I finished my initial 10 treatments just in time, right before we left. I’m happy that I did this because I barely had an issue with my hands while I was over there. I think a big reason for this though was the climate. Many cities we were in were very cold and several of the halls we played in didn’t have proper heat. Cold weather is always good for people with HH, so I wasn’t complaining.

A month after returning to the states, I performed with this same group at Carnegie Hall. I hadn’t kept up the treatments, but my hands weren’t bothering me because of the winter weather. However, Carnegie was really tough for me. I’m lucky that I remembered to bring my wash cloth on stage. I thought I’d only need it intermittently, but the stage was hot and I was holding onto it for dear life in between the notes.

Playing the flute with HH is really tough. Over this past weekend, I played a concert with my quintet and during rehearsal, my hands were so bad. I had to constantly use my towel and even had to ask if we could open a window to get some colder air circulating. It’s really frustrating when I need to concentrate on playing the right notes and all I can do is make sure I don’t drop my instrument. I feel like I’m not playing to my potential because a lot of my energy is going to just making sure my hands don’t break my instrument.

I need to start treatments again really soon. Not only for musical reasons, but because my wedding is now next month! Time flies!

HH strikes again in the most unexpected places. 2 weeks ago, I had my first dress fitting. I was having my dress pinned so it could be hemmed and the tailor asked if I could hold out the front of the dress. I did until my hands got to be too much. I actually told the tailor that I have hyperhidrosis and asked my mom to take over holding the dress. I was so scared that the sweat on my hands were going to discolor my dress! I don’t know why I bluntly told the tailor about my HH. I think it is because I figured she wouldn’t know what I was talking about, but I also got the sense that she wouldn’t care.

Also two weekends ago, I got a new phone. I upgraded from an iPhone 4s to the 6s. On this new phone, it takes your thumb print as a security code. In the store, the sales rep was asking me to type info and put my thumb print on the sensor. The whole time my hands were dripping and I was petrified that it wasn’t going to work. Thumb print scanning has failed in the past for me because of HH several times. I was also worried the sales rep would notice and I’d get embarrassed.

So, there’s always something with HH. I’m on  the subway right now typing this up on my new iPhone and I have to keep stopping to dry my hands. Scared I’ll break it or electrocute myself.

I’m going to start treatments tonight.  In the winter months, I need it less, but in general, I find continuous treatment challenging. Maybe I’m too busy, or maybe I’m just lazy. Does anyone else have trouble keeping up?

Until next time: Stay cool and dry!

Thanks for reading,

Caryn