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EricaBeale.com

AWHS: My Dermatologist is Leaving and I am DEVASTATED

Losing a Trusted Doctor is Like Losing a Limb

It took a long time for me to find a dermatologist who made me comfortable. Years, in fact. Others I’ve had have been nice enough, but Dr. Kwon got me and HS. Being in stage 3 is a nightmare, so having a patient ear helped in my darkest of times.

When I couldn’t get anyone to get me on Remicade, she helped right away. She kept me up-to-date on all the new things available to HS sufferers. And when my labs came back crazy, she called me while she was on vacation to get me to the ER. This lady is the kind of doctor all of us deserve.

I hoped she would stay with the derm team at the hospital, but she’s leaving for private practice in another state. When I found out I cried so much a lady in the lobby offered to hug me. That was a tough day.

Looking back, I’m a little embarrassed about it. Dr. Kwon is awesome, so I should have just been happy to hear she was graduating. Hell, that is one heck of an accomplishment, right?

The Ups and Downs of the Last Visit

I’ll admit, internally I was a mess about having my last appointment with Dr. Kwon. I know she wouldn’t throw me to the wolves of the dermatology clinic. And she didn’t. She gave me a healthy list of names of her partners to see once she departs for good at the end of the month.

I thanked her for being a great doctor. For listening to my woes. For trying her hardest to find the best solution to at least ease my suffering. Did I get through it without crying? Hell No. But, she cried a bit, too. It was an emotional time, broken up by multiple shots of steroids in my netherbits.

It was a weird day.

At the end of the day, I sucked in a breath and put my Big Girl panties on and gave the doctor a final farewell. Unfortunately, when I went to check out, things went wrong. That’s a story for another day, though.

HS Sufferers Deserve a Dermatologist Who Listens

My fellow HS sufferers, do not put up with providers that don’t listen. You should be heard. Your dermatologist should be your cheerleader, helping you through this painful journey with tenacity. If your doctor doesn’t know what HS is, make sure you put your foot down and show them the resources available. Hopefully, you shouldn’t have to.

More importantly, know you’re not alone. If you have any tips and tricks, know any doctors who rock, or just want to complain about HS, drop it in the comments.

And those of you in Houston, if you’re looking for a dermatologist, look up Dr. Christina Kwon in the next few months. I promise you’ll be in excellent hands!

In the meantime, my friends, Keep your Mind in the Gutter.

Intimate with Intimacy: The HS Victim’s Nightmare

https://pixabay.com/photos/passion-lust-pair-hands-5120121/

Anyone with Hidradenitis Suppurativa will tell you how hard it is to get behind getting busy with someone new. It’s a damned nightmare. There’s always this fear in the back of your mind that your partner will take one look at your bump-n-lumps and run screaming for the hills. It’s not a good feeling.

Hubby and I started off with an online relationship. We lived on entirely different coasts. Luckily, with that distance between us, I could manipulate the narrative about my body. If I showed him anything, it was by picture or video. Super easy to hide the places I hated. My armpits, under my breasts, and my groin were all a war-zone back then, so I kept them well hidden at all times.

I was excited to see him in person for the first time. But I was also scared out of my mind. I told him I had a skin problem but glossed over how bad it really was. Thankfully, he is a very understanding person and we had no problems in the bedroom.

Even with him being understanding, I still freak out occasionally, but I think it’s an understandable feeling. I feel gross way more often than I feel sexy. Sometimes it puts me off sex, especially when the HS is really flaring up. It’s the absolute worst.

I’ve been with the same person for over 16 years, so I haven’t had to worry about the “someone new” aspect of HS for many moons. However, if I had to (like if Sweet Hot Thor comes a-knocking) this is the advice I’d give myself.

Only date someone who makes you feel comfortable.

One of the most important things in any relationship is to find someone you can be your truest self with. If you can’t, then it might just be time to move on.

Make sure you tell them about your condition before you hit the bedroom.

Having someone reaching down your pants is not when you want to drop the HS bomb. Way before you get to that stage, be open and honest about your condition. Hey, as uncool as HS is, there is no shame in it. It’s not something you can control and it’s a part of who you are. You may hate it, but you’re going to have to own it. Control the narrative before it controls you!

Don’t be afraid to give them research material

There are plenty of resources out there explaining hidradenitis suppurativa. Get together with your lover and show them what it’s all about. Understanding is key. Plus, this way your special person can get an idea of what they could possibly do to help you. My husband has been instrumental to me dealing with HS.

Take your time. There’s no rush!

Hey, only do things you’re ready for. If you’re in a relationship where someone is trying to push it too quickly,  stand up for yourself. If that person can’t wait, well, they can go find someone else. You’re worth the time and if they don’t get that, then they can move the hell on.

Remember you’re a hot piece of ass no matter what condition you have

Yeah, that’s right. I’m talking to you. You are amazing and there is something about you that is more brilliant than the sun. HS is a small part of your life. The rest of you is what’s important. Don’t let HS hold you back!

You Won’t Go Through This Alone!

Don’t be afraid to tell your loved one about this aspect of your life. Yes, it sucks. There are miserable days sometimes that make you feel like the least sexy thing in the world. Just remember, while it may affect your life, HS is just a very obnoxious hurdle. Find someone who will go on the journey with you. And if your person doesn’t want to go with you, it’s time to pack up and leave them behind. You deserve only the best.

Until next time, my friend. Keep your Mind in the Gutter!

Hidradenitis Suppurativa

A Pain in my Ass…LITERALLY

My Constant Companion

I have the vaguest of memories about the first time I realized something was wrong. I was nine years old. I had always been tall and fat, enough so that my fellow classmates made fun of me for it. But, unfortunately, I also started puberty. Imagine being fat and developing. Not the best time I’d ever had.

Not long after puberty started, I developed a large bump on the side of my groin. It hurt like hell. I remember my mom wanting me to walk to a store with her and I cried because the area hurt so badly I couldn’t walk. She heard nothing of it, of course, and dragged me out anyway.

Eventually, that one drained out and I felt better. Mom didn’t take me to a doctor or anything (not that doctors back then knew anything about hidradenitis back then). I was lucky it cleared up on it’s own.

But that wasn’t the only one. More came. Over and over again. On my groin. Under my arms. Under my breasts. And they hurt. And they smelled sometimes. I cried so many times over these areas. Why did I have to have this? What even was it?

It wasn’t until I was twenty-one that I got an answer.

Putting a Name to it

When I was twenty-one, I enrolled at a trade school to become a medical assistant. Part of that process included getting clearance from a doctor. My mom wasn’t big on doctors, so I never had a family doctor I went to regularly. Luckily the school had a partnership with local docs for cheap physicals with local doctors around the city. I made an appointment with one not far from my home.

Sick with nervousness, I went. I didn’t want to show off my underarms, which had become riddled with oozing holes and lumps. I thought for sure the doc would take a look and deny I was fit for duty. The doctor did look and finally gave me something I desperately needed: a name for what I had.

Hidradenitis suppratia. He didn’t really explain what it was, but having that much was practically a miracle. After he cleared me for school, I rushed home to jump on the internet to find out what in the ever actual loving f**k it was.

What is Hidradenitis Suppurativa, anyway?

Back then there wasn’t a whole lot of information. Still, what little I found gave me some peace of mind.

The explanation from Mayo Cliic:

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is a condition that causes small, painful lumps to form under the skin. The lumps usually develop in areas where your skin rubs together, such as the armpits, groin, buttocks and breasts. The lumps heal slowly, recur, and can lead to tunnels under the skin and scarring.

Mayo’s HS Page

Yeah, it’s about as sexy as it sounds. I can say with 100% confidence, that it’s the absolute f***ing worst. Keep in mind, HS usually strikes areas where your skin rubs together. Arm pits, under boob, between the legs/thighs, ass crack. God, in the ass crack has been the absolute worst experience.

It has three different stages, aka Hurley stages. I’ve made a handy infographic about it below, but let me give you the Erica listing:

  • Hurley’s stage 1: Bad
  • Hurley’s stage 2: Terrible
  • Hurley’s stage 3: F***********K

I’ll bet you can guess which stage I’m in. I always thought it was bad, but it just got worse over time.

Finding a cure

Right now there isn’t a cure for HS. There are things you can do on your own and therapeutic methods you can receive through a doctor. I’m pretty sure I’ve been on all of them at this point.

Stuff You Can Try at Home

(Of course, seek out a physician’s advice first!)

Elimination Diet

For some, HS could be triggered by certain foods. Many have removed dairy, sugar, bread and nightshade veggies from their diets. In some cases, it does help. Take one of these out and see if that makes your flares slow down

Tea Tree Oil

A clean scented oil that soothes. I suggest mixing it with something like coconut oil before applying to your skin. It can be harsh.

Vick’s Vapo Rub

I know this sounds crazy, but it does help. Not only does it soothe, but many find it helps bring the affected lump to a head so it will burst and drain.

Dietary Supplements

Tumeric is a natural anti-inflammatory. You can either make a paste with it and put it on the affected area, use it in food or tea, or take it in capsule form. Zinc has also been known to help out as well.

Hibiclens

Oh, Hibiclens! Where would I be without you? It’s an Antibacterial and Antimicrobial skin cleanser. It keeps the bacteria on the skin from forming. I use it daily on my areas. It’s a bit watery, so you probably want to invest in getting the foaming pump version. I bought it once, then refilled it with regular bottles of the cleaner.

Again, please (PLEASE) speak to a doctor before starting any treatment! I want you to feel better AND be safe.

Treatments Doctors Could Suggest

Antibiotics

Your doctor will probably start you off with a regimen of low-dose antibiotics. Usually clindamycin or maybe something stronger like doxycycline. Just remember to take them on a full stomach (ask me how I know).

Biologics

From WebMD: Biologic drugs are human-made proteins that are designed to zero in on parts of the immune system that trigger inflammation. Medications such as Humira and Remicade fall under this.

Surgery

Every doctor I’ve had surgery with says they treat HS like cancer and remove it all (aka excision). Sometimes these can be large areas of the body. Healing can take a long time and can be grueling, but It will definitely bring relief once it’s all said and done. Unfortunately, the HS could return where you’ve had surgery.

Places to find help

HS is a wild ride and sometimes it can feel like the loneliest journey. You’re not alone, though. You can always hit me up and I’ll be happy to chat. Also, here are some places you can go to either find information or support. These sites are pretty active and can provide a lot of guidance.

Moving forward

Whew, that was a lot. I hope it helps! I will be doing an ongoing series in regard to my life with HS. Talking about it is therapeutic for me. Plus, maybe someone out there will see they’re not alone in dealing with this outrageous disease. As I said, it’s a pain in the ass, literally.

Keep your mind in the gutter. Until next time.

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