It’s that time again…

This week in NYC, it has reached almost 80 degrees! Too hot for me already!

I’ve been really struggling with my work clothes and shoes. I need to be able to dress light, but not sweat through everything. Walking has already become a pain- wearing flats without socks. I am slipping, squishing and sliding. Today, I was smart and am wearing my cotton ped socks with my flats.

I caved this week and bought another fan for my desk at work. This one I put on the floor, directed at my feet.

Now I have one fan on my face and hands and one on my feet. Hopefully this will help keep my entire body cool this summer!

I am definitely considering moving somewhere where it is in the mid 50s all year round. Suggestions?

Good luck out there, and keep drinking water!

Best,

Caryn

Riverdance anyone?

About 5 weeks ago, I started taking Irish Step dance lessons.
I used to dance (tap and jazz) and I have always loved “rhythmic” dance.
Anything with a tap on the shoe to make percussive noise, I’m there.
Maybe it’s the musician in me.

I’ve always been interested in Irish Step, especially hard shoe.
Right now, since I’m a very beginner, I’m starting with soft shoe.
This means, there aren’t any percussive sounds.
The shoe is a soft leather with no taps on the bottom.

Anyway, I was so excited for my first class!
I hadn’t taken dance in years, and was happy to start again.

As soon as I got there, panic hit me.
Have you ever seen Riverdance?
All of those dancers hold hands…like the whole time!
Why didn’t I think of this??

I’m ready to bolt, but wait and give it a try.

Thank goodness, this class is different!
It’s more “solo” Irish Step.
There are other people in the class, but we just keep our hands down at our sides.
Haven’t had to hold a hand yet!

This experience brings up an issue that many HH sufferers stress about.
Have you ever wanted to do something but didn’t because hand holding may be involved?

I used to be a gymnast.
Okay, I was 5.
But I could pull off a mean cart-wheel!

Recently, around the time of the last Olympics, I read the results of a HH survey asking:

“What would be the worst Olympic sport for people with HH, what would be the best?”

Overwhelmingly, the results were:
Worst: GYMNASTICS | Best: SWIMMING

Can you imagine gymnastics with HH?
The uneven bars? The balance beam?

I don’t believe I quit gymnastics because of my HH.
I think I was just being a kid and didn’t want to do it anymore.

Sometimes, I wish I would have continued.
But I cannot imagine I would have any success due to HH.

I love dancing, but I would never take ballroom or salsa.
I used to want to clog dance.
My sister took it and I really enjoyed watching her.
But I wouldn’t ever dance ballroom/salsa/clogging because there is hand holding involved with some steps.
Why would I voluntarily put myself in that position?

Happy Reading,
Caryn

ETS Surgery, Part 3- Compensatory Sweating

I was penciled in at Columbia Presbyterian Hospital to get the ETS (Endoscopic Thoracic Sympathectomy) surgery in December 2011.

I was all for it at first- too frustrated with living with myself. Every day, struggling with the smallest of tasks.

All of my friends and family seemed pro-ETS. They just wanted me to be happy and live a better life.

At the last minute, I cancelled my appointment.
The reason being the potential side effects.

I began reading horror stories of compensatory sweating. Stories where people began sweating all over their bodies, much worse than their hands had ever been.
Some stories were about people who didn’t leave their houses anymore, couldn’t wear their usual clothes, or refused to hug their loved ones. Many stories were about people who became depressed.

My boyfriend, Francis, started to worry about this surgery. He wanted me to be happy, but he didn’t want me to change. He thought the potential side effects were way worse than what I was currently dealing with. We both didn’t want to risk the compensatory sweating.

My hope is that the surgery continues to improve with a lower risk of compensatory sweating. If this happens, I will most likely get the surgery.

Until then, I am living the best I can.

Best,
Caryn

Hand Holding in Schools

I’ve had a goal recently to start working with children and HH. I want to go into the schools and educate teachers, nurses, parents and students about HH.

One goal is to adjust lesson plans to remove activities that require hand games or holding hands with other students. This could include activities in gym class such as dancing or certain types of tag, classroom games of getting to know each other, and/or holding hands with a buddy when walking down the hall.

I remember as a child going through Elementary school especially, other students didn’t want to hold my hands because they were wet. At my young age, I still didn’t know what was going on with me. I didn’t know I was different from other kids. It was confusing and hurtful when people would call me gross.

I feel that as an alternative, schools could start by making these activities optional and the buddy system could be altered by using a rope to hold on to, instead of someone’s hand.

Ideally, by educating about HH in the schools, teachers will know what to look for in HH sufferers and be able to address the condition with the student and parents. If teachers find a student with HH in their class, their lesson plans could be altered accordingly and special attention could be given to the child. For example, I know that I struggled a lot writing with pencil and paper in class or working on art projects. The teacher would be able to offer the student additional time to complete projects, and offer alternatives such as: going to a separate room to take tests, give the child a paper towel or cloth, let the student write with pen, etc.

Recently, I spoke with a friend of mine who is currently earning her music education degree. She wants to be a music teacher in public schools.

When I spoke to her about my idea to remove hand holding from schools, she disagreed. If I understood her correctly, her theory is that children need hand holding to feel safe and connected to others. Also, if someone in the class had HH, it is the teacher’s responsibility to let the other children know that the condition is not a big deal, and that holding the person’s hand is okay.

I see where she is coming from, but I just cringe when thinking back to when I was a kid. It was really painful to feel different and gross.

What do you all think?

Computer Keyboard with a Built in Fan?

I was very frustrated at work today. I’m not sure if it’s hotter in my office or if I’m just stressed, but my hands have been constantly sweating. The sweating was really irritating me as I typed on my computer keyboard.

I decided to do a Google search to try to find a computer keyboard with a fan positioned at the hands. I have a fan on my desk now, but it doesn’t help much because the airflow is not able to reach my hands.

What I found was a gamer keyboard. What an ingenious invention!

Gamers’ hands get sweaty, and they may not even have HH. The fan is built-in to the upper left hand side of the keyboard and keeps your hands cool as  you type.

I’m not a gamer, but I still want this keyboard! I wish that general keyboards would start offering this fan option. I don’t need all the other fancy “gamer” features.

Check the keyboard out HERE.

                                             

Sweat and Chicken Wings

Hi All,

I recently received a question from a reader about how HH impacts my dating life.

Well, from my previous entries, you all know I’ve been in a long term relationship for a while.

My boyfriend’s name is Francis and we have been together for 4 years. We were long distance for a while, but now we are happily in the same city- New York City!

Although my boyfriend and I are now very comfortable with each other, my HH still plays a big part in our relationship. Just the other night, I asked him again (for the umpteenth time): “Are you sure my hands don’t bother you?  “It’s not gross when I touch you?”

Thankfully, Francis has always been fine with my HH. I am lucky to have found him!

Other than the physical aspect of HH, he understands when I get very frustrated and emotional due to HH limitations. I try to be calm, but sometimes I can’t help it. He talks me through it or gives me a hug.

Francis is also very supportive about my goal to help others like me with HH. He encourages me to blog and to talk to people. It feels really good to trust that Francis isn’t grossed out by my HH and he is someone I confide in all the time.

We don’t let HH limit our relationship. We go out, stay in, watch movies, go to dinner…we are a pretty normal couple. If we’re talking about HH, it’s usually about ideas for my blog or ideas for future non-profit organizations for people with HH. We don’t like to let HH bring us down, although it’s okay to feel sad sometimes.

My advice to you is: Don’t settle. There is a guy or girl out there who will be accepting of your HH and you deserve to have that person.

And you never know- that person may just have HH themselves. Or a version of it.

I will go out on a limb and say that Francis has secondary HH. Secondary Hyperhidrosis is different from mine (primary) because it is caused by something. For example: taking certain medications, being overweight and/or having other medical conditions can cause overactive sweating. Francis’ cause happens to be spicy food.

The first time I noticed the sweating was when we ate chicken wings together at a dining hall on our college campus. His forehead had broken out in a sweat and had started dripping. The back of his shirt was starting to get wet.

I felt more comfortable mentioning the sweating because of my own condition, and Francis told me that it always happened to him when he ate spicy food.

Since then, this has been a normal and frequent occurrence. We both really like Thai food, and sometimes it can get spicy. He will sweat right there in the restaurant, and sweat way more than me! His forehead will sometimes get really sweaty and he has to go through a bunch of napkins to mop it up.

I have never had a problem with spicy foods and sweating, so I don’t really understand that aspect of overactive sweating. However, I know that Francis has a much better idea of my HH through these experiences.

I recently asked him if he made social decisions based on his spicy food sweating episodes. He said that he probably wouldn’t eat anything really spicy out in public, but it doesn’t bother him too much if he sweats just a little bit since he really likes spicy food.This is similar to people who suffer from primary HH because we make social decisions based on our HH all the time.

Francis did not know what HH was before he met me. I didn’t know he had sweating tendencies when eating spicy food. Since we started dating, I have slowly taught him what it means to live with HH. I know he still learns new ways I am limited by the condition, but he has a much better sense of what my life has been like.

If it’s any reassurance for the future, I notice that my sweating has decreased when around Francis because I am now more comfortable and relaxed around him. Dating always made me nervous, and nerves will create more sweat.

Don’t hide your HH. If it comes up, talk about it. HH is a big part of your life and a big part of who you are, whether you like it or not. The right person for you is going to love you for everything you are.

All my best,

Caryn