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

Advertisements

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

I couldn’t think of a lie, so I told the truth

Yesterday I had a late night with my quintet. We were listening to our recording takes and choosing the best ones for our upcoming CD release. I knew that no matter how late we stayed out together, my night was going to be much longer because I had to get home and use my Iontophoresis machine.

While taking the crosstown bus home through Central Park from the East to the West side, I mentioned to my quintet-mates traveling with me that I had stuff to do when I got home and that I was going to be up late. One member asked what I was up to and I immediately regretted saying anything in the first place.

I couldn’t think of a white lie quick enough- It was late, and I was tired! So…I told the truth.

Me: “Well, this is going to sound weird- really weird. But I have a medical condition that needs treatment sometimes and I have this machine that is kinda like a form of electrotherapy.”

Him: “Oh, man. What does that look like?”

So I told him about the set up, etc. I did all of this without going into what condition I actually have that requires this treatment. It was cool that he was interested and didn’t react negatively, but I know that I have to explain HH. I can’t leave that part out!

Prior to October 2013, all of my quintet-mates knew about my HH. It was such a relief to tell them and have their support. I didn’t have to hide using my towel when I played and we were all more sensitive to trying to avoid hot temperatures in our rehearsal and performance spaces. Since October though, my quintet has accepted new members. These members don’t know about my HH. I’ve been meaning to tell them soon though because it was so beneficial for me when everyone knew before. The situation that happened last night seems like a good segue into that.

I kind of regret saying anything at all, but know that this discussion will push me to open up to them. My quintet is like my family and I know they will be supportive and understanding.

I’ll let you know how it goes!

It’s hot in here!

Hi All,

My office at work is extremely hot. Something is broken with the heating and cooling system here and so now we have 3 fans on full blast in the middle of winter!!

What I find interesting is that my coworkers and employees are complaining every day about the heat, whereas, I don’t find it that bad. It almost feels normal to me. I think it’s because I’ve learned so many coping mechanisms with the heat from having HH. I breathe through it, drink a little more water, and try not to think about it. Sure, I still sweat, but I’m not letting the heat bother me.

Do you think you cope with extreme heat a little better because of HH?

Best,

Caryn