secondary hyperhidrosis

How to tell Someone you have Hyperhidrosis

/ carynjoan / 12 Comments

Hi All,

I know that telling people about your HH is really difficult and scary. Sweat is a taboo subject at the very least, but it has also proven to have negative connotations in society. So, we hide, conceal, disappear, and avoid doing what we love.

HH creates a physical disability, but also a social one. One day, I hope that HH is a commonly known condition. One way we can help the cause is by telling people about HH.

Every person you tell is one more person with understanding and awareness. Knowing this gives me a little boost of courage. I tell people about my condition for the HH community.

Here are a few ways I have told people about my HH:

1. I find the most effective way to tell people about my HH is in person. Usually, I will wait until I have visual example to show the person, ie. Excessively sweaty hands. I don’t tell just anyone. At this point in my life, I am only telling people who I have known for a while and trust/care about a lot. After some time, I know I can trust my relationship with the person to remain the same even if I open up about HH.

Sometimes, the opportunity will present itself. Maybe the person will notice and ask about it, or you’ll experience an embarrassing situation where there is absolutely no way to hide, or it’ll be really hot out and you are sweating much more profusely and noticeably than they are.

I usually start by saying, “I have a medical condition called Hyperhidrosis. It’s difficult for me to talk about, but I struggle with it every day and I’ve had it my whole life.”

When telling people about your HH in person, you are able to answer questions and have a dialogue about it. You are also able to make sure they fully understand all aspects of the condition and how it impacts your life. Understanding the full impact is very important, as we all know that HH is NOT Just a Little Sweat.

Last, when telling people in person, you are able to see their facial expressions and gauge their reactions. When I email people about my HH, and they don’t respond right away, I can never be sure what they are thinking. By telling people in person, you have a much more immediate and honest reaction.

2. You can email/snail-mail people you trust about HH. I have done this several times. Sometimes it’s just easier to hide behind the computer. I have emailed and sent Facebook messages to some of my closest friends. Some members of my quintet found out about my HH through email. I have also emailed co-workers and old college friends.

I try to write a very open and honest letter describing HH and what it has meant for me to live with it every day. I also mention how important it is that I can be open with them about it from now on. This does not mean that I need to talk about HH all the time. I just don’t want people to be quiet about it and treat it like some secret that I want hidden. That’s not the point. The point is to start feeling normal with our condition.

3. If you want to stay anonymous but still help the cause, tell someone by blogging about HH! That’s how I started. I wrote this blog anonymously for a really long time.

Blogging was and is very therapeutic for me. I used to be so angry about HH, but recently am focusing my efforts more positively. As a result, this blog has helped me and others.

Please feel free to add any other tips for telling people about HH. Have courage and good luck to you all out there!

Caryn

Hyperhidrosis Genetics Study

/ carynjoan / 2 Comments

This past year, I participated in a study conducted by the Albert Einstein College of Medicine on the genetics of Hyperhidrosis.

In today’s e-newsletter from the International Hyperhidrosis Society, I learned of some findings from the study. You can read the article HERE.

If you are living with HH, I encourage you to contact the College of Medicine and participate.

My experience with them was very positive. I was mailed a free kit that included a HH questionnaire and supplies for DNA samples (mouthwash samples).

After the questionnaire was complete and mouthwash samples were collected, I mailed the kit back to the Albert Einstein College of Medicine, free of charge.

It is important for your family members to also participate in the study whether they have HH or not because genetics and heredity are being tested.

Thanks for reading,

Caryn

 

What do you say?

/ carynjoan / 10 Comments

Hey All!

I’ve had a great time responding to all your comments from the article, and it’s time to get back to posting! Thanks for your patience!

For some time now, I’ve wanted to write about my palmar HH and what I say or think  about my hands when they are extra sweaty.

Palmar HH is really difficult.
If my hands are extra sweaty and I’m in a meeting, I literally can’t take notes. I can’t even move.

The other day I was in an awfully stressful meeting. I literally sweated through half a notebook- just by holding it.

If the sweat wasn’t enough, I was also super self conscious about my neck and chest blotching and was trying so hard to cover it up.

Other examples of Palmar HH struggles:
If I’m on a hot platform waiting for the subway, I can’t read a paperback book or a newspaper- I can’t even hold it! (Recently switched to Kindle and loving it)
Also, just last night, I was trying to answer emails on my Mac and my sweat was interfering with the trackpad! Can’t catch a break.

Palmar HH is so annoying!

Here are a few things I say about my hands:

My hands are…

1. melting
2. not working right now
3. broken
4. bad
5. a mess
6. not behaving

I’m sure I missed a few.
What do you say about your palmar HH?
Please leave me comments!

Thanks for reading,
Caryn

I was featured by the International Hyperhidrosis Society!

/ carynjoan / 14 Comments

I wanted to share some exciting news!

Today I was featured in an article in the International Hyperhidrosis Society eNewsletter! Sharing my HH story with others has been a really rewarding experience and I thank the International Hyperhidrosis Society for giving me the opportunity to share with so many of you!

Please click HERE to read the article.

The International Hyperhidrosis Society is a fantastic support site for people with Hyperhidrosis. They share a wealth of information including HH education, tips for coping, stories from others with HH, deals and discounts on sweat-helping products, research studies, treatment information, a comprehensive search for doctors, ways to get involved and more! I have had a really positive experience communicating with them in preparation for this article and always find their website helpful. Please check it out!

All best, and stay tuned for an entry about the Iontophoresis machine that was just donated to me from R.A. Fischer iontophoresis devices !

Caryn

 

Sweat on Command

/ carynjoan / 14 Comments

Earlier this week, my boyfriend Francis was visiting me at my apartment.
We were in one of our silly moods and when we both noticed that my hands were dry, he challenged me to make them sweat.

I went silent.

Francis said, “You know- you should practice your super power.”

“Shhh- I’m concentrating.”

Within 10 short seconds, my hands were glistening with sweat.
“Here, feel” I said, as I put my hand on his arm.

Francis was pretty impressed. I was too.

I knew I could probably sweat on command, but I had never really tried it.

All I have to do is think about my hands getting warm and they start tingling.

I like how Francis called it my “super power.” I hope one day I can use my power for good.

If only I could control the sweat and make them dry on command.

Oh well- maybe with practice I can! 🙂

Happy Reading,

Caryn

 

 

Riverdance anyone?

/ carynjoan / 1 Comment

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

/ carynjoan / 4 Comments

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

/ carynjoan / Leave a comment

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?

/ carynjoan / Leave a comment

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.