Ever tried petting a furry animal with sweaty hands? Not the best experience in the world.
When my hands are really bad, I won’t pet my cat because I will end up with cat fur all over me.
I feel bad, but I think she understands and still loves me 🙂
Meet Grace, 3 year old calico rescue from Upstate New York. 
Thought I would add a quick picture. I was just holding a magazine, and this is what happened. Usually doesn’t happen with glossy magazines…
It surprised me. I wasn’t sure where it was from, until I looked at the cover of my magazine. Sure enough, my HH had taken some of the color off. Yuck.
This is not “Part 2” of my previous entry.
One of the reasons I titled my previous entry, “Have I avoided this enough yet?” is because it’s so hard to talk and write about. It’s even hard to think about. I’ve gone back and forth for months on the subject, finally making at the very least, a temporary decision. It’s an exhausting topic and so I will be avoiding it some more, until part 2.
Today, however, I wanted to briefly discuss something that I find interesting.
This is probably going to make me sound like a hypocrite and I hope I don’t upset you.
My hands aren’t sweating 100% of the time. There are plenty of times when I’m totally “normal”.
During these times, if I encounter the sweaty palms of someone else, I find it…unpleasant.
That is the term I have decided to use. I don’t think it’s “bad” or “gross”. I don’t judge these people, I just notice that it is “unpleasant”. A sweaty handrail on the subway…a wet shopping bag handed to me by a cashier.
Believe me when I say that this upsets me. I of all people, sufferer of HH, should understand a thing or two about sweat. And you know from my previous posts that those two exact situations have happened to me! So why do I react this way? I guess I’m seeing it from the other side.
Also what is interesting, is that I had a similar reaction to just water. I went to hold my boyfriend’s hand and it was wet from the condensation from a drink or something. My reaction was the exact same…I knew it wasn’t sweat, but it was wet, and I didn’t like it.
So, okay, that makes me feel a little better. It’s not really the sweat that bothers me.
Still. Why?
It makes me feel kind of defeated actually. That no matter how much awareness and acceptance there is of HH, it’s still “unpleasant”.
Thoughts?
Caryn Joan
ETS stands for: Endoscopic Thoracic Sympathectomy.
For the most vague and quick definition, WIKI says it pretty well- “Endoscopic thoracic sympathectomy (ETS) is a controversial surgical procedure where certain portions of the sympathetic nerve trunk are destroyed.”
This surgery is most commonly used to cure palmar hyperhidrosis. Some doctors will guarantee that 100% of palmar sweating will be cured following this procedure.
This is how and why I found about the surgery:
Last summer was probably the worst summer of my life. It was my first summer living in NYC full time. And it was HOT!
As you know from my previous entries, you know that I struggled a lot. But what you don’t know is that I told my parents last summer that my HH was so unbearable at times that I wanted to throw myself in front of an oncoming subway train.
There, I’ve said it. Please don’t worry about me. I’m fine and mentally healthy now. I didn’t want to end my life for any other reason than feeling disgusting in my own skin due to HH. But, I’m sure you can imagine, this is a pretty big deal. In the heat, I literally can’t move. I need to stand, frozen and still. I need to bury myself so deep inside and try my best to meditate out of the distress I’m in.
Here comes another summer…pretty nervous about it, as it’s already really hot- and it’s just May!
Anyway, my parents were pretty worried about me. My mom had researched about the surgery for a while and gathered all these materials, yet she didn’t tell me until the end of July.
My family and I were going to Arizona for vacation. We were in line for security. I’m wearing sandals.
Why did I wear sandals? How did I forget that you need to remove your shoes before going through the metal detectors? And what’s that up ahead? No rug! Black linoleum.
So there I was, freaking out in line that I was going to 1.) leave embarrassing sweaty foot prints on the linoleum and 2.) cause myself danger by slipping and sliding on it 3.) cause attention to myself in a place where I really shouldn’t be.
My heart is pounding, I’m sweating profusely, and all of a sudden my mom goes:
“You’re getting surgery.”
What?!
My mom tells me about her research and that there’s a surgeon in NYC who does the procedure. She seems very enthusiastic, yet, there’s something she’s not telling me.
“I’ll tell you later,” she says.
No, tell me now.
“They need to deflate your lungs.”
No way.
I don’t think I’m alone in the fear of doctors and hospitals and needles and anything invasive. So, my first reaction to learning about the surgery was me freaking out about the prospect of my lungs being deflated.
My mom brought all of her research with her, and I read through it on the plane to Arizona.
I literally started crying on the plane reading the material.
It was just so emotional to know there was a “cure” out there that would help people like me. I just thought about all the pain (emotional) I’ve been through and other people have been through and how much HH sucks.
If you have HH, I suggest you do a TON of research about ETS surgery. As WIKI says- it’s a “controversial surgery.”
Please don’t take this post to mean that I support ETS.
Stay tuned for Part 2 to learn what I have decided to do.
Thanks for reading, and feel free to ask questions.
Caryn Joan
If you’re curious about how it feels to have Hyperhidrosis, what I suggest, is carry around a bottle of hand lotion.
Through out the day, excessively lather the lotion on the palms of your hands, so there is no possible way for it to absorb in to your skin. Don’t wipe the excess away.
Try to go about your daily activities.
Shake people’s hands. Try to open doors. Try to open a window. Try writing with a pencil.
How does this feel?
I have always found similarities between HH and this exercise.
How uncomfortable it is to not be able to wipe the moisture away? How difficult it is to do certain things with your hands?
As of today, it is estimated that 2.8% of the U.S. population has primary HH. This number is not accurate due to the hundreds and thousands of people who keep their HH a secret.
If you didn’t understand before, I hope this exercise has helped. Thank you for spending a day in our shoes.
Caryn Joan
I’ve accepted that there isn’t a cure for Hyperhidrosis, but that doesn’t mean I’ve sat around with out trying to find treatment.
This post will describe what I have tried in the past.
1. CertainDri– an antiperspirant with aluminum compounds.
I wrote in one of my posts that I had such bad underarm sweating years ago. Sweat stains all the way down my shirt under both arms.
I think my mom got me to try CertainDri.
CertainDri was the first and most painful of my treatments for HH. It completely took any moisture out of my skin. It hurt for my skin to rub against itself when I moved my arms. My skin became red and swollen.
I used CertainDri for about a year. I wanted to stop so much because of the pain. I’m glad that I stuck with it though.
Even after using CertainDri for only a year back when I was in middle school, I have not had any more problems with underarm sweating. Thank goodness!
I won’t try this on my hands or feet though, because of the extreme pain.
2. Drysol– another antiperspirant I used on my hands and feet
I remember using this in high school. I would dab the liquid on my hands and feet at night. To keep the liquid on my skin, my mom helped me wrap my hands and feet in plastic wrap.
I hated this. The liquid made my hands and feet so tingly and uncomfortable. To say the least, Drysol didn’t work for me.
3. Iontophoresis– Electronic Therapy.
Another high school memory…
The Iontophoresis machines for HH are basins filled with water that deliver small electric shocks to your skin. Yes, I did this. I put my hands and feet into these machines and shocked myself intentionally.
It wasn’t too painful, surprisingly. But, no luck with this one either.
For a clearer picture on what this machine is and does:
http://www.klimadeodorant.com/iontophoresis-machine-electronic-hyperhidrosis-hidrex-idromed/
4. Glycopyrrolate (Robinol)– Ulcer Medication
This was my miracle drug.
A little pill, taken twice a day, used for Ulcers because it supposedly gets rid of any extra water/liquid/moisture.
The VERY FIRST DAY I took this pill, I thought I was cured. My hands and feet were doing pretty well, actually.
I took this pill for 4 years.
I barely complained about HH for 4 years.
My family hadn’t heard me talk about it in so long, that it came as a shock last summer, when it started coming up in conversation again.
Last summer, I became immune to the drug.
Last summer, I fell into a depression because of it.
Can you imagine how I felt? To be cured for 4 years,
then all of a sudden, become a sweaty mess again?
Last summer, I decided to do something about HH
in a way that would reach and help other people.
5. Blogging
Talking about my HH has been a journey.
I’ve learned a lot more about myself than I thought.
It has been a successful form of treatment so far.
It’s emotional for me.
It’s like opening a time capsule that I didn’t want to find.
When I remember things from my past that hurt me, it’s rough.
Talking about last summer is hard.
That’s when I realized all my problems were back.
The most successful part of blogging so far, has been controlling my anger.
I used to be so angry about HH before.
I still get upset, but nothing like before this blog.
I really hope I’m helping someone out there.
Thanks as always,
Caryn Joan
There seems to be little knowledge on what causes Primary Hyperhidrosis.
This is what I have. I sweat excessively not because of a medical condition or medications.
The causes for Secondary Hyperhidrosis are many: Heart Disease, Hyperthyroidism, Menopause, and many more.
Primary Hyperhidrosis is a little more tricky.
It involves our genes. Genes that get passed down generation to generation.
As of right now, there is no cause for Primary Hyperhidoris, just as there is no cure.
However, it seems to run in families.
As far as I know, the first person in my family to have HH is my mom’s sister, my Aunt.
Growing up knowing that my Aunt has what I have made it easier to deal with. I wasn’t so alone.
She had tried teaching me visualization techniques to help the sweating, but nothing really caught on with me.
But at the very least, I knew I had someone in my life who understood what I was dealing with.
HH is a funny thing…
My grandparents didn’t have it, my Mom and Dad don’t have it.
My Aunt’s children have it, my sister has it a little bit.
I don’t know why this gene keeps skipping around like this.
Interestingly enough, I recently found out that my cousin may have a little bit of HH.
I learned this when I was talking to her about starting this blog.
People are so ‘hush hush’ with HH, it was never a conversation growing up.
But I was dealing with a lot of emotional anger at the time due to HH, a large reason why this blog exists today.
I needed to talk.
So, I told her about it one day. Told her everything.
She was surprised that I had HH.
But what was more,
was the overwhelming realization that she shared some of these traits.
I recently participated in a genetics study for Hyperhidrosis.
The goal for this study is to “identify those genes that are responsible for excessive sweating and ultimately to use this knowledge to find a way to control or cure the excessive sweating in affected individuals.”
Pretty great goal, isn’t it?
So, I sent the kit to my Aunt and my sister too. The doctors involved even wanted my parent’s input, even though they weren’t directly affected.
It’s really easy. You just answer a bunch of questions related to your experience with HH. Then you provide buccal cells by spitting mouthwash in a cup and mailing it out.
I want and need everyone with HH to complete this study! You can find the information here: http://www.sweathelp.org/en/taking-action/participate-in-research-2/participate-in-a-trial.html
And it’s FREE!
The study does explain that people suffering with HH will not have immediate relief. This is a long term study. Hopefully, after some time, they will have isolated the gene(s) that cause HH.
But they need people to participate in order for the study to go anywhere.
Isn’t it worth it?
After seeing the heredity of the condition, our own kids or grandkids could be born with HH. I want to help my future children and grandchildren to have a better life.
Thanks for listening, as always,
Caryn Joan
More like the rusted one…
My HH creates a physical problem for my instrument. The sweat is constantly “gunking” up the rods and right hand mechanism, slowing the keys down. I will often bring my flute to the shop to get it taken apart and cleaned.
Unfortunately, my sweat has done a number on the appearance of my instrument as well. It’s only about 4 years old, but I am asked if it’s an antique.
Regardless, I always say how lucky I am to have chosen the flute as my instrument.
Sure, I have problems playing the flute with HH. But when I think about it, I would have a much harder time playing any other instrument.
Of course I didn’t choose the flute because of this reason. I was a kid. I wasn’t thinking about how this choice would effect my future. At that point, I thought I was going to be a hair dresser or professional basketball player or taxi driver (all real ambitions I had as a kid).
When I think about attempting to play other instruments with HH, I realize how difficult they would be.
String instruments would be impossible. My fingers would slide off the strings. My swollen fingers would cause problems with the small spacing of the strings.
I’ve played piano before, and that’s not fun either. You will usually share pianos with people, and I hate leaving wet keys behind.
I played saxophone for three years in high school and had a brief few months with the clarinet. I had a lot of problems attaching the mouthpiece and reeds with my HH. I was always using paper towels to help me place the mouthpiece on the cork. You adjust the mouthpiece to tune your instrument with the band. I had so much trouble with this simple task. If I didn’t use a paper towel, the mouthpiece wouldn’t adjust, and instead, I’d accidentally pop the metal ligature off (how the reed stays on).
Double reed instruments like oboe and bassoon would also be impossible I think. You need to make your own reeds using small intricate tools. Remember when I said I cringed when I saw someone on the subway taking their phone apart because I knew I could never do something like that? I would never be able to use these tools with HH.
So, I am so thankful to have chosen the flute and I really consider myself pretty lucky! No reeds, no strings, no sharing.
Here are some other things I could never do or would be very difficult to do:
1. Lyrical dancing.Usually done with bare feet. I would be a hazard to myself, slipping and sliding on the floor.
2. Be a hair dresser. One of my earliest dreams. I wouldn’t be able to touch people’s hair or style it without making it all oily and gross.
3. Manicurist. Holding people’s hands…enough said.
4. Be a gymnast. I would have loved to be a gymnast. For my hands, I wouldn’t be able to do parallel bars. For my feet, I wouldn’t be able to do balance beam.
5. Be a repair person. Whether using small tools or not.
I could probably do many of these things if I wore gloves, but the feeling of sweating inside gloves is uncomfortable for people with HH. Especially rubber gloves- yuck!
Thanks for reading,
Caryn Joan
It’s been an emotional few days.
It all started with that awkward situation at work that inspired my poem post on Tuesday. My boss at work had noticed my hands sweating and I had just dismissed it, like usual.
Then the anger set in.
I get so angry at myself for living in secret, hiding, and for feeling hopeless.
I told my boyfriend what had happened and he said, “You should tell her.”
NO. I refuse. (my exact and immediate response.)
Fine, living in secret one more day. I’m only hurting myself- anger to the point of hyperventilation, a spinning head, shaking hands and twitching head full of bad memories. I can deal…
I was so angry that day that I had written a full draft of a ranting post, blaming society for creating a taboo about sweat that has kept people like me hidden.
So, that night, two things happened.
1. I ranted to my boyfriend about everything. He always supports me and helps me deal with my condition. He understands me and my condition completely. Yet, he brought up a good point: That my blog is for creating awareness and that I should be living my life accordingly. My blog and my actions in my daily life should compliment each other.
But right now, I’m still living in secret. I still haven’t told many of my friends! Even my blog is partly anonymous!
All of a sudden, the reality crashes down in front of me.
I’M PART OF THE PROBLEM!
You have no idea how sad this made me. I felt like I let everyone down. I felt like I was especially letting everyone with HH down by not following through with my mission.
But…I’m too scared.
2. I came across a YouTube video of a girl about my age who has HH. I immediately recognized that we were identical. We had the same problems, experiences, tried the same remedies with no success.
We were different in one way.
She was optimistic about HH and usually told people freely and laughed about it with coworkers.
Wow. This girl is so inspirational!
But then, it hit me again…I’m not doing anything to help HH. I felt even more sad for hiding. I’m not acting on my mission.
So….
The very next morning, I walked into work. Heart pounding, scared, sweating profusely.
This is it. No better time than now. At least I have a visual example. (This I have to laugh at after the fact. You should have seen me! I was a mess. Even my head was sweating- a place where HH rarely gets me.)
Anyway-
I did it! It was terrifying, but I did it! And it was successful.
I did it for myself, but more than that, I did it for everyone out there suffering everyday with HH.
One step at a time, we will create awareness. It’s scary, but knowing that I was helping the HH community gave me plenty of courage.
After all of this, I felt an emotion I wasn’t familiar with. I’m usually so angry about HH. Now, I realize that being angry is the easier emotion.
I’m not saying that I’m cured of my anger. I don’t think you can ever get rid of that. But, I see HH a little differently now.
Honestly, I didn’t feel as satisfied as I thought when I told my secret. Maybe it’s because I know that this isn’t the end. In my lifetime, I will tell hundreds and maybe thousands of people.
Talking about HH is really exhausting.
1. You usually tell one person or a small group at one time.
2. You’re usually terrified and sweating like crazy.
3. If you’re like me and HH has turned you into a somewhat shy person, you don’t really like talking about yourself.
4. You need to use your words carefully so that at first impression:
5. You are afraid that the person will look at you and/or treat you differently.
My hope for everyone suffering with HH is to be brave. I challenge you to tell at least one person you have it.
See how it feels to tell someone.
If we all work together, we will succeed in creating awareness.
As always, thanks for reading! Please feel free to leave comments!
Caryn Joan
I want to escape.
My hands shake with anger.
Of disgust.
Of my destiny.
Wanting to shake away the memories.
Clasping my hands in prayer
and wishing to escape this moment.
Poem inspired from my anger after an awkward experience this morning at work.
Caryn Joan
Just a Little Sweat 