hyperhidrosis

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?

Smelly

/ carynjoan / Leave a comment

Hi All,

It’s time to get a little real here.
I know that sweat itself doesn’t smell.
If this is news to you, it’s true.

Sweat doesn’t smell, but the bacteria on your body will break the proteins of sweat and cause a smell.

A few days ago, I was in a meeting and I was sweating a little more than usual.
I had another appointment soon after the meeting and was worried I wouldn’t make it out of the meeting on time.
When I was excused from the meeting early, I didn’t want to get up before everyone else because I had a feeling I was going to trail a bad scent.

So I stayed put until everyone left.
This experience just brings up something else that I and people with HH have to deal with.

I’m paranoid and self-conscious.
I don’t know if I really did smell, but my mind was telling me that I did.
HH really effects your mental state of being.

To try and help the smell, wear more absorbent fabrics. Cotton always works will for me.
It is also very important for people with HH to shower often (once a day is fine) and maintain good hygiene.
When I was younger, I would buy scented hair products and body sprays to mask the smells of my HH. I’m sure I put too much on all the time!
Now, I buy scent-free laundry detergent because I think the smell of HH mixed with scented detergent is worse!

If anyone has any other suggestions, please feel free to leave them!

Best,
Caryn

 

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.

                                             

New Coping Tip

/ carynjoan / 2 Comments

Hi All,

You all have heard how nervous I get about shaking people’s hands because of my HH. Going to an interview is especially nerve-wracking. You don’t want to give a bad first impression, and you hope your interviewer looks past your sweaty hands. Unfortunately, sweaty hands can give the impression that you are more nervous than you really are. I wish it weren’t true, but a sweaty handshake could be what is standing between you and that job.

Recently, I have been on the other side of the coin. I have been interviewing 3 or 4 people each week for the past two weeks for an open position in my office.  It’s been a really interesting experience so far. I have never been an interviewer before. I have learned what it really takes for a resume to stand out, and the reality of the interview and application process.

I’m happy to have this responsibility, and I am up for the challenge…

but think of all the hands I’m shaking!

I shouldn’t be the nervous one, yet shaking hands makes me nervous no matter what.

If my hands aren’t wet, they are freezing cold.

I really didn’t want my handshake to leave a bad first impression with the interviewees, so I tried something new:

I washed my hands right before I was about to meet them.

By washing my hands, my hand temperature was regulated and the sweating wasn’t as bad after wiping my hands dry.

I recommend trying this out, and let me know what your results are! This is a great new coping tip for me, and I hope it helps you too!

Best,

Caryn

New Quality of Life Survey

/ carynjoan / Leave a comment

If you have Hyperhidrosis, check out this new Quality of Life survey: http://www.hidroqol.org/

It’s different from the previous survey because it focuses on our experience with the condition over a longer period of time (21 days).

The survey doesn’t take very long, and there will be only 3 surveys in total. After completing the initial survey, you will receive a survey after 8 days and then again after 21 days.

Please take this survey if you suffer from HH! Results from this study will help improve the diagnosis of HH and ultimately contribute to improving our quality of life.

Best,

Caryn

 

 

Sweat and Chicken Wings

/ carynjoan / 1 Comment

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

Crocs

/ carynjoan / 6 Comments

Unfortunately, many of my shoes suffer a premature death. Especially my ballet flats that I sometimes wear with no socks.

This is because of my Hyperhidrosis.

HH will ruin the insoles of a shoe pretty quick. I had 2 pairs of Steve Madden flats that ruined within one summer. The metallic inside rubbed completely off.

HH will also make your shoes smell. I try odor-eater insoles but it doesn’t help much. Usually those insoles ruin even quicker than the shoes.

Having HH and wearing no socks will also probably impact your walking pattern.
I know that I walk differently when I’m slipping and sliding in my shoes. This altered step can ruin the whole make of the shoe, inside and out.

So, I’m in Disney World on vacation a few weeks ago and I saw a woman wearing some shoes that looked cute, comfortable and….plastic?

Okay, so they’re Crocs. And after researching them, I learned that their Croslite material doesn’t absorb water! Check this Youtube video below!

How perfect for me! I bought a pair of “Kadee” Crocs and I’m giving them a try. They are really comfortable and so far doing great with my HH.

If you buy online, sign up for a new account. You will receive a welcome coupon and save money on your first purchase! There’s also free shipping!

I know that the Crocs name has gotten some laughs, but I think the new styles are really nice. If you have HH especially, I think it’s worth a try.

Here are the ones that I got: Kadee Croc. 

Happy New Year!

Caryn

Blushing and Blotching

/ carynjoan / Leave a comment

I am having a problem with the overactive blushing symptom of HH recently. I’ve been given a lot more responsibility at work, and maybe I’ve just been more nervous and anxious than usual, but my neck and chest are blotching up like crazy!

It’s so frustrating and embarrassing. I see coworkers looking at it, and one has even made a comment. I try to explain that it’s part of my condition, but I don’t go much into detail.

All I can do is be strong, and look them in the eye. I try to ignore it. This takes a lot of will power, as you know.

When people with HH blotch up, we can feel it. At least with me, there is heat on the skin of my chest and I know immediately that I am having a blushing problem.

I want to tell everyone that I can’t help it and that I’m sensitive about it.

Other ways you can  cope with overacting blushing are:

1. wear scarves
2. wear large necklaces to cover it up
3. keep your chin down so the neck isn’t fully exposed
4. in a meeting, hold your notepad in front of your chest
5. or- let your blotching continue to the point where your entire chest and neck area are all the same color red. I almost prefer this to the inconsistent blotching. I think it is less noticeable.

These tips may sound silly and probably aren’t fully effective. But, these are my personal coping mechanisms that make me feel a little better about it.

At any rate, remember to breathe and drink water.

I had a meeting today where blotching and blushing was a real problem. I ended up with a terrible headache from the anxiety I put myself through. Yet, no one said a thing.

All my best to you out there…welcoming the cooler weather!

Caryn