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”.
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.
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.
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:
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.
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.
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.
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!
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:
People don’t think you’re gross
People understand that it’s more than Just a Little Sweat
People understand the social, emotional, physical, and psychological implications
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!
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.
Oh! I’ve never told you about the other symptoms of Hyperhidrosis?
If you’ve never heard of HH, you probably will never guess that these symptoms come along with the excessive sweating.
1. Uncontrollable Facial Blushing (and what I call “blotching”).
I really wish that this symptom was not a part of HH. When I am anxious, I will get red blotchy spots all on my neck and chest and my face will turn beet red. I understand that this blushing is brought on by anxiety, but I know that it is worsened by having HH.
I’m a classical musician and sometimes solo performer. As such, I’ve worn strapless gowns on stage and am center of attention. How embarrassing is it to have huge red spots all over my neck and chest? Especially when I don’t have them normally. My friends always notice it, and that makes me feel very self-conscious. I just tell everyone I get hives. But I know they aren’t hives. But I refuse to wear turtle necks to cover it up. I shouldn’t have to adapt to this condition. Just thinking about adapting makes me angry. Same as I shouldn’t have to move to a cooler climate for HH. If I do, then HH wins! I can’t let HH win over me!
2. Cold Hands and Feet.
Aren’t normal people hot when they sweat? Not people with HH. We could be sweating in the middle of winter.
What’s interesting about HH is how cold it makes hands and feet sometimes, even in the most drastic heat. My hands will get so freezing that it is uncomfortable for me to rest my hands on my own arms. Having freezing hands just adds another level of insecurity for me, especially when shaking hands. It’s a double whammy…like my title says: As if uncontrollable sweating wasn’t enough.
As always, thanks for reading and please share with others,
Have you ever realized that you’ve blocked memories from your past?
I have.
Last night, as I was talking about my childhood with my boyfriend, these memories started flooding back to me.
(This is going to be a long post…)
I remember when I first realized I had Hyperhidrosis. I was in 1st or 2nd grade and had asked my mom why my hands were so sweaty all the time. She told me that I’ve had sweaty hands and feet since I was one year old. She told me how I would leave footprints on her when she stood me up on her lap. The doctors had tested me for Thyroid problems because that could cause excessive sweating. But all the tests were negative. My sweating was just ignored because my health seemed normal. I was self diagnosed with HH in middle school when the internet became readily available and I was able to research what was going on with me. I actually wasn’t officially diagnosed by a doctor with Hyperhidrosis until high school when I decided I needed some extra help in coping with my condition.
Back to my young self:
After my mom had told me about my hands, I was upset. “Why didn’t you ever tell me?” I asked her. My mom hadn’t wanted to tell me because she didn’t want it to affect my life. I understand this to a certain extent because when I don’t think about my HH, my hands sometimes aren’t so bad. Maybe if I didn’t know I had a problem, my sweating would fade.
Once I knew that I was born with this condition, things started to make sense. I understood why kids in school didn’t want to hold my hand. As a youngster in school, we often had to hold hands with our “buddy” to go to the lunch room or music room. We often had to hold hands for games played in the classroom. I vaguely remember kids saying “ew” when they would hold my hand. Kids can be so cruel…without even realizing it. I think this is why I sat down and had that talk with my mom in the first place. I knew that something was wrong with me. I knew that I was different, but I didn’t understand why.
In 3rd grade, I have a memory of working on a class arts and crafts project. For some reason, I remember having to make hole punches and use the little punched out circles. I remember not physically being able to do this. Think back to my previous post: I struggle doing things with my hands that require small pieces. Plus, all those little white punched out circles were sticking to my hands. There was no way I could do this project. I started to cry.
I cried almost every day in elementary school. I became a perfectionist in my anxiety to be able to be normal. I became shy trying not to cause any additional attention to myself. I’m not going to say that my HH was the only reason I became this way, but I will tell you that I’m sure it was a big part of it.
By the time I hit middle school, I had cried myself dry. I didn’t cry again for years. I was numb to it all and worried about that sometimes.
Middle school was one of the worst times for my HH. I had terrible under arm sweat. I would literally have VERY visible sweat marks ALL the way down to the bottom hem of my shirts. I went to the nurse all the time, probably about 3-4 times a week. I would tell her I had a “stomach ache” every time. In all reality, I was just trying to cool off and be away from my peers. If my peers saw me like that, I’d have a big problem. I was so anxious of my secret being found out that I probably made my sweating even worse. I still remember one specific time…I was wearing a pink long sleeve t-shirt that said “Paris”. I had caused the sides of my shirt to become dark with sweat. As I walked to the front of the room to my teacher to get a pass to the nurse, I swear I heard kids giggling in the classroom. Maybe it was just me…but this is what my memory is telling me. Every day, I would take extended nurse or bathroom breaks just trying to cool down.
Middle school was also the first (and only) time my teachers had to be notified that I had HH. I don’t think I’ve mentioned this fact about HH yet in my posts, but, writing with pencil on paper is sometimes impossible. The sweat from my hands causes my paper to become curled up, but that’s nothing compared to my struggle with pencils! If sweat from my hand drips on the page, my pencil will not write in that spot. It’s just impossible. Think about getting a bead of water on your paper, then trying to write on it with lead. Even today, if I need to write something and my hands are bad, I need to put a piece paper (I’ve learned that card stock or thicker paper works best) or a towel under my hand. So, my teachers needed to know that I had a problem writing with pencils because so many tests required a No. 2 to fill in the bubbles on tests. They needed to know that my bubbles might not be filled in properly.
I think it was good that my teachers knew, but I’m glad they didn’t make a big deal about it. My mom had a meeting with them about it, and I didn’t have to be there. So, I’m not sure my teachers knew that I knew they knew…
In high school, I was on the tennis team. I remember cutting finger on the canister of tennis balls as I opened it right before a match! I ran to my coach and he gave me a band aid.
I had to tell my coach, one band aid wasn’t enough. I must have been really desperate/in pain/in a rush because I told him that I needed more than one band aid because I have Hyperhidrosis. One band aid was not going to cut it. It would last 10 seconds with HH. I have always had a problem with Band aids in this way. In order to make band aids stay on me, I need to stick them on each other tightly. One bandaid around one half of my finger, another band aid around the other half-sticking to the first band aid and not my skin.
By the way, my coach was only intrigued, excitedly asking me questions like: Do you need to drink more water because you sweat more? Ummm…I don’t think so… Although I do drink a ton of water, just because I love water 🙂
Another tennis related story I have was when I had hurt my wrist. I wore a hand brace for a while. It was like a little glove on my right hand.
I kept wearing this brace even after I was healed, all through the season. Guess why. You’re right! This glove helped my grip of the tennis racket with my HH. I remember one opponent asking me: “Do you mind if I ask what happened to your hand?” I just lied and told her my wrist was still hurt from a tennis related injury.
These have been some childhood memories I haven’t remembered in years. I always knew I wanted to write about how my HH effected me as a kid, but I needed that little memory jog to remember just how much. I must have internally labeled these as negative memories and locked them away somewhere in the back of my mind.
There are so many instances in school that made having HH difficult. Maybe this post will help change the teaching curriculum. Today, I am careful to observe if people are having difficulty with certain tasks with their hands. I look for people who might be struggling, causing them to be in a frustrating, impossible and potentially embarrassing situation. I would never want to force someone to do something that causes them to have such difficulty- physically, mentally and emotionally.
I’m not saying that hand holding or craft projects should be banned from schools. I’m just hoping that people become more aware of HH and are observant of the signs. Don’t force the kids to do something that might make them feel bad about themselves when it’s not their fault. As someone with HH, I want to tell you all who struggle with me: YOU DIDN’T DO ANYTHING WRONG. You are a beautiful person inside and out.
Just a Little Sweat 