Iontophoresis Machine

My Secret Isn’t So Secret Anymore

/ carynjoan / 1 Comment

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

Wedding Shoes

/ carynjoan / 2 Comments

My wedding day – April 16, 2016.

It was the best day of my life, but Hyperhidrosis almost made it a disaster.

Everything was in place. Our timeline was set and our vows were written. Our friends and family were gathered. We were ready to celebrate the start of our lives as husband and wife.

Our colors were yellow and gray and the decor was daffodil themed, my favorite flower. It was perfect for a spring wedding. We took a lot of inspiration from one of our favorite books/movies, Big Fish, where daffodils play a big role. Even in its rendition of a short lived musical on Broadway, the lyrics of one of the songs:

Let’s build a world of daffodils
That never fades and never dies
I see the answer in your eyes
You’ll be the bride
I’ll be the groom
A daffodil in every room

28200516105_48aa423941_z

My dress was everything I had dreamed of; long white lace with a low V back. I wore little blue earrings as my “something blue.” I even found the cutest yellow and white lace open toe shoes…

27584846804_15aaa0ec7c_z

Wait. Open toe shoes!? What was I thinking?

If you’ve read some of my previous entries, you may remember that I gave up open toe shoes awhile ago. My feet would sweat, then my shoes wouldn’t fit properly, and I would risk slipping out of them.

How did I forget all about this during my wedding planning? I thought they were the perfect shoe and my mind was set.

In preparation for our big day, I was all up to date on my iontophoresis treatments for my hands. My hands were doing great and I had the extra benefit of the colder weather to stunt my excessive palmar sweating. But I didn’t do anything for my feet. I just didn’t think through what could happen.

Thankfully, I had no issues for our outdoor ceremony. It was in the middle of chilly April in upstate NY. We made it through our emotional first look and our beautiful ceremony, tears and all.

27590095134_3f4eba3704_z

Afterwards, at our indoor reception, we went immediately into our first dance which we choreographed ourselves. It was flawless. My body temperature was still on the cooler side from being outdoors, so I didn’t have issues with sweat when we were dancing. But as soon as we finished, that’s when my body temperature caught up with me.

My feet started to sweat. This could be a problem. 

Francis and I sat at our sweetheart table for dinner. I called a waitress over to bring me a stack of paper towels. She asked if there was a spill and was concerned. I said, “No, I just sweat a lot.”

And so throughout dinner, I had my feet under the table resting on paper towels. Thankfully, there was a long tablecloth that hid my feet from the guests. It was pretty embarrassing though, and very upsetting for me. Would I be stuck at my table the whole night? I shouldn’t have to deal with HH on my wedding day.

Right after dinner was our father/daughter dance. I went up to my Dad right before and told him that I could barely walk in my shoes and to be very gentle when dancing and twirling. We made it through beautifully, but I was so nervous. My feet barely left the ground as I slid around the floor. I’m thankful that my Dad understood the situation and he didn’t make a big deal out of it.

I was really worried about being able to enjoy the rest of our reception. I could barely walk in my shoes, let alone dance. I could never go barefoot as that would be even more dangerous and slippery. I felt like I was going to be stuck at my table all night with my feet on paper towels.

I told my sister who was also my Maid of Honor what was going on. As the problem solver that she is, she suggested, “How about putting the paper towels in your shoes?”

What a brilliant idea! I had a long enough dress that would cover my shoes, so no one would really see a paper towel sticking out of the open toe.

I put the paper towels in my shoes and it was the best thing I did. It allowed the sweat to soak up and I wasn’t slipping out of my shoes anymore. I was able to enjoy the rest of our reception and dance the night away!

I am happy that I remember our wedding day as the perfect day. I am thankful for my sister’s help in remedying my situation and making sure I had a good time. Although I’ll never forget this sweaty memory, there are happier memories that come to mind when I think of that day – marrying my soul mate and sharing the day with everyone we love. We will always have our perfect day.

Caryn

28101412332_62905b80d1_z

I’ve missed you!

/ carynjoan / 1 Comment

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

 

Hello!

/ carynjoan / 5 Comments

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.

Confucius Temple
Certified to perform in China!
Playing a Chinese flute in Shanghai
I’m on Chinese TV!

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

Concerts in the Summer

/ carynjoan / 5 Comments

The summer is getting hot here in NYC! Sometimes it feels like my Iontophoresis treatments are not working as well, but I am going to attribute that to the heat. My hands have been sweating a lot and I’ve pretty much given up on my feet. My feet sweat terribly but it doesn’t bother me as much because I stopped wearing open toed shoes a couple of years ago, and wear socks or peds with all my shoes. I’ve been able to cut my Iontophoresis treatment time in half! When my fiance is with me, he helps work and monitor the device so I can treat both hands at the same time. 20 minutes of treatment is a lot better than 40 minutes!

A couple of weeks ago, I was fortunate to play with an orchestra at Merkin Hall. During our rehearsal a few hours before the concert, the stage was impossibly hot and humid. The heat made my hands constantly sweat. I had my yellow towel with me, but it wasn’t helping! Every note I played on my flute made my hands feel mushy and like I was breaking my instrument. I knew at that moment that I would not be able to make it through the concert without a towel, but I couldn’t bring my yellow towel on stage. Orchestra members wear all black during performances, so I needed a black towel so it wouldn’t stand out. I actually went to a store between the rehearsal and concert to find a black washcloth. After searching the entire store, the best I could find was a dark blue. I bought it and brought it on stage with me that night. It was helpful, but by that point, the AC was working a lot better and I didn’t need it as much. At least I now own something that I can bring on stage with me in the future. The concert was a huge success and I can’t wait to play with them again!

Caryn

Iontophoresis Devices and Insurance Reimbursement

/ carynjoan / 3 Comments

Hi all,

I hope you are enjoying the warmer weather now that winter is officially over! It was a very long and tough winter here in NY. Now that we are experiencing higher temperatures, our sweatiness is really being put to the test. I’m continuing with my Iontophoresis treatments once per week using the R.A. Fischer device. My hands are slightly clammy at times, but overall they are doing well.

I was recently introduced to another Iontophoresis device that is worth a look. Find info about it here: Hidrex TWI 

This company also offers Insurance Reimbursement Assistance that can be found HERE.

All best,

Caryn

Iontophoresis Trials

/ carynjoan / 5 Comments

Hello all,

I’m back! After my 100th blog entry at the end of last year, I needed a little break. It’s time to start writing again!

I hope your new year is off to a great start. So far this year, I’ve been busy with new projects in music, Just a Little Sweat, my career, and wedding planning! I imagine this will be a very exciting year for me and I’m looking forward to sharing with you along the way.

In the meantime, I’ve been wanting to talk with you about my Iontophoresis treatments, but I have held off for a few reasons:

1. I never told you that my hands started sweating again back in October although I continued with regular treatments until December with no results
2. I wasn’t sure if I had become immune to the Iontophoresis treatments or if my machine had stopped working
3. I wanted to see if I could do anything about it

I’m sorry that I never told you about this, but I have good news to report now.

When my hands started sweating again, I emailed Bill Schuler from R.A. Fischer (the company my Iontophoresis device is from). He told me that he had heard of this same occurrence from other customers in the past and suggested that I take 1 to 2 weeks off from treatment and start again. I took the time off, and then started up with the initial treatments in January (every other day for 10 treatments). I am happy and relieved to report that it was successful! I am now seeing positive results from the Iontophoresis treatments and use it once a week.

I wanted you all to know about this in case this ever happens to you with your Iontophoresis treatments. Try taking some time off and start from the beginning again!

When my hands started sweating again, it was really discouraging, especially because it was immediately after I got engaged and people were taking my hands to look at my ring. I was really upset about it and scared. Iontophoresis had been so successful with my palmar HH and I was worried that I had lost the one treatment that had actually helped.

I’m happy I can report good news!

Have a great day and thanks for reading,

Caryn

Iontophoresis with Baking Soda

/ carynjoan / 6 Comments

I’ve been using my Iontophoresis machine once a week for many months now with great success! However, in early October, I noticed my hands were starting to sweat a little more than usual. I was really concerned about this and felt like I might have formed an immunity to the machine.

To help, I started doing treatments more than once per week. At one point, I was using it three or four times in one week. Still nothing was working.

I remembered one of my readers from NYC had said that the water here is pretty soft and sometimes doesn’t work well with Iontophoresis. Until October, I hadn’t had an issue with the water or effectiveness of the machine. I was told that adding baking soda to the water can help by adding minerals and electrolytes.

After adding baking soda to my treatments, I noticed a significant difference. My palm sweating is now more under control. Adding baking soda does make the treatments a little more uncomfortable. It irritates my skin a little more, but it’s worth it!

Sweathelp.org has an article dedicated to Iontophoresis. In addition to baking soda, it says you can even try crushing Robinol tablets in the water.

I’ll let you know if the baking soda continues to work!

 

 

 

 

Entire Medical Journal dedicated to HH

/ carynjoan / 2 Comments

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.

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

/ carynjoan / 5 Comments

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!