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

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.

SelfonSnapChat

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

 

Entire Medical Journal dedicated to HH

Last week, I received an email from the International Hyperhidrosis Society stating that an entire issue of the Dermatologic Clinics medical journal was dedicated completely to Hyperhidrosis! This is ground-breaking news and I wanted to learn more. The issue is found in October 2014, Volume 32, Number 4. It covers topics such as:

  • Prevalence of HH
  • Impact of HH on Quality of Life
  • Special Considerations for Children with HH
  • Topical Therapies
  • Iontophoresis
  • Botox treatments
  • Oral medications
  • ETS surgery
  • Emerging therapies
  • Resources for patients and sufferers
  • Incorporating diagnosis and treatment into Clinical Practice

You can purchase the entire issue or individual articles. This is a really exciting breakthrough for people with HH. The issue will be available to medical specialists and provide education on our condition and the latest treatments available! Just another big step in the right direction for universal awareness and understanding.

Certain Dri Giveaway!

Certain Dri Antiperspirant is a product I saw success with early on in my life. I started using it in middle school after noticing that I had a huge problem with underarm HH. My underarm sweating caused me a lot of embarrassment in school and I was very unhappy.

After using the Certain Dri roll-on, I started noticing results pretty quickly. Underarm sweating didn’t occur for three days at a time.

Continued use of Certain Dri proved 100% successful for me. I no longer suffered from sweat stains reaching the hem of my shirt and felt more comfortable wearing lighter colored shirts.

Certain Dri has greatly improved my quality of life and I recommend this product to all my readers who suffer from excessive underarm sweating.

Recently, Certain Dri found my blog and approached me because of my success with their product. They have offered a unique opportunity to you, my readers.

Thanks to Certain Dri, I have been offered a chance to host a giveaway of Certain Dri product- an antiperspirant in your choice of a roll-on or solid.

The giveaway will take place from Monday, July 8 to Wednesday, July 17.

CLICK HERE to find out more information and to enter!

Good luck!!

Caryn

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My First Experience with the Iontophoresis Device

A couple of months ago I was offered an opportunity to try an Iontophoresis machine for my Hyperhidrosis. The makers of the R.A. Iontophoresis device loaned me a prescription machine- the MD-1a Galvanic Unit! I have been working with Bill Schuler, R.A. Fischer president and long-time supporter of the International Hyperhidrosis Society, over the phone and via email for tips and coaching and updating him of my progress.

What is Iontophoresis, you ask?

Defined from the R.A. Iontophoresis website: “In cases where antiperspirants are not effective, a physician may recommend “Tap Water Iontophoresis” for treatment of palmar or plantar hyperhidrosis. In medical terms, iontophoresis is defined as the topical introduction of ionized drugs into the skin using direct current (DC).”

My first experience with this machine caused a lot of anxiety. I opened the case and saw a lot of wires and many booklets and sheets of paper with instructions.

Francis and I read through all the directions, we set up the machine and prepared the trays with tap water. This being the first time, it took us about an hour before we actually turned the machine on. I’m glad we went through everything thoroughly because I felt that the machine could be dangerous to me if something was set up incorrectly. Francis used to work for the American Red Cross and I was happy that his medical instincts took over as he carefully made sure everything was hooked up properly. He let me focus on calming my nerves. I already knew the general idea of the device as I had tried Iontophoresis about 10 years ago with no success, but this machine looked a lot more intense.

I opened the case to find that it conveniently slides apart to become two tap water trays. One metal plate rests in each tray and a cloth goes on top of the plates to avoid any direct contact with the skin. Each plate is connected by a wire to the main device where you change the level of milliamperes. The instruction booklet said that you should aim for setting the device to 12-18 milliamperes.

Finally, after making sure everything was hooked up correctly, I was ready for my first test with the device. Each of my hands rested in a tray on top of the cloth covering the metal plates. We were ready to turn the machine on.

Although I knew the machine was safe, I couldn’t help fearing that I would somehow be electrocuted and pass out once the power button was switched on. I could feel knots in my stomach and my breathing was fast. I was really nervous.

During the first treatment, Francis was responsible for working the device and changing the level of milliamperes. He counted to three and he turned the machine on.

Phew- I was okay!

Francis gradually increased the milliaperes to 12- we didn’t go any further than that on this first try.

What I noticed most was vibration. The vibration was pretty severe during my first try- vibrating my fingers, palms, wrist, and half-way up my forearm. If the sensation was getting to be too much, I asked Francis to lower the milliamperes slightly.

The vibration sensation was not painful, just a little uncomfortable.

After ten minutes, it is instructed to gradually decrease the milliamperes to 0, reverse the charge, then gradually increase again between 12-18. This lasted for another 10 minutes, and then my treatment was done for the day!

I was happy to find that the treatment wasn’t painful and that I felt safe. The treatment takes a lot of time, but I was able to watch TV during it. Watching TV also helped keep my mind off of any discomfort I felt with the vibration sensation.

I was also relieved that Francis was with me for my first treatment. He was very supportive and protective of me and made sure I was feeling okay.

After the first treatment was over, he wanted to try the machine to see what I was feeling! I let him try it very briefly, and we only went up to about 6-7 milliamperes. He could feel the vibrations from the plates.

This really showed me how much he supports me and that he was willing to step into my shoes, so to speak. His actions spoke largely about his character.

Stay tuned for another entry about my other treatments with the Iontophoresis device!

Best,

Caryn

Carrying case for the R.A. Fischer Iontophoresis device. The case comes apart to become two tap water trays for the treatments.

Carrying case for the R.A. Fischer Iontophoresis device. The case comes apart to become two tap water trays for the treatments.

The milliamperes are adjusted on this device during treatments.

The milliamperes are adjusted on this device during treatments.

During my first treatment, I treated both of my hands at the same time because Francis was adjusting the milliamperes on the device.

During my first treatment, I treated both of my hands at the same time because Francis was adjusting the milliamperes on the device.

 

How to tell Someone you have Hyperhidrosis

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