Hidradenitis Suppurativa

Imagine that you’re going about your life one day, and you notice that you have been scratching at the same dime-sized spot of skin for the past few hours now–let’s say it’s on your underarm. Or maybe it’s tender, so you keep rubbing it. Either way you notice it, but in passing annoyance.

You continue about your day.

Later you start to feel a bit run down. “Am I coming down with something?” you wonder. You feel rather achy, and that spot on your underarm—whether it be itchy, tender, or both—is starting to firm up beneath the skin. Maybe you were bit by a spider while you slept last night.

Your day continues. As you go about your business you notice your underarm becoming more sensitive by the hour. As you move your arm you feel a burning pain radiating from the spot. The itching intensifies. What on earth bit you? You may duck into a bathroom to check it out. The skin is red, tense, and raised. There may even be a bit of a bump on the surface. You touch it and discover that beneath the skin, there is a firm lump the size of a quail egg. The pain is an excruciating, stabbing burn that radiates down your arm.

You finish your day and are getting ready for bed. You may be turning in a bit early due to fatigue or you may have toughed it out until your regular bedtime. You take some over the counter pain meds, and climb into bed gingerly, trying to not disturb the boil—which is quite swollen by now and may be anywhere from red to purple in color. Your underarm aches, and you drift off into a fitful slumber.

A day or two passes. The boil has swelled into a monster—half-above and half-beneath your skin—somewhere between golf ball and baseball-sized. You make an appointment with your doctor, who looks at it, only sees what is on the surface, then tells you to take some acetaminophen and to clean better when you shower [and to take more showers]. If you’re overweight, they also tell you to lose weight. You go home. You feel like you’re going to come down with a cold any minute—achy, sweaty, tired, cranky. The boil throbs even when you’re not moving your arm, and makes doing anything difficult.

That night you go to sleep, and wake up a few hours later. You notice that your arm isn’t as tender, but there is an awful smell, and that the underarm area of your T-shirt is damp. You turn on the light in the bathroom to find that the boil is now oozing a milky, bloody mixture that smells absolutely terrible! You try squeezing it but not much more comes out, despite how much there is on your shirt. You put a topical ointment on it, a bandage, change your shirt [and maybe bedding] and head back to bed.

The next morning your underarm throbs. Every movement of your arm causes a radiating, burning pain. It feels raw and bruised despite it opening up. And it’s still oozing that fluid.

This continues. It might continue for a few days, or it might continue indefinitely. Over time, more of the boils appear. If they heal, they leave behind horrible white or purple scars. If they don’t heal, they will constantly bleed, and/or ooze a clear to milky fluid that smells like something died. New boils will appear inside of the scars, and old, healed lesions will open up again. Multiple boils will form close together and create a tract of tight, inflamed skin over a large area. You see your doctor over and over again with the same results—they tell you to clean yourself better and/or to lose weight. Sometimes you receive antibiotics if it looks like you may also have an infection, but that is rare.

Over time you become self-conscious. You change your routine, trying to not irritate the affected area. You stay home on days where the smell from the open sores are too bad, or when the pain from moving is too great. Over the counter pain medicine does nothing to alleviate the deep-seated throbbing, stabbing, and/or burning pain that comes from these boils. Any kind of pressure is agony, and they tend to form in the worst possible places. You’ll distance your friends. You may lose your job. You constantly feel rundown and achy. Your sleep suffers. You gain weight from inactivity. Each day becomes a chore to complete.

This continues for years, unchecked. You cycle through periods of flare ups and remissions where it’s not so bad, but as time goes on, the “good days” become few and far-between. You begin having “not-as-bad-as-normal days” instead. The aching, pain, and tenderness is constant. You may begin to get boils in other areas as well.

Some day you might get lucky. You may find yourself in the emergency room, at the end of your rope due to a massive softball-sized boil, and luck into a doctor who not only wants to lance it so you can get some relief, but knows that you have a legitimate disease—and that it has nothing to do with poor hygiene like your doctor has been saying. Others won’t be so lucky, and might go through life thinking that they are prone to getting boils, that they somehow aren’t washing properly, or that it has to do with weight. But if you do get a diagnosis, just knowing these things can be so freeing!

This disease is called Hidradenitis Suppurativa, often abbreviated simply as HS. It is a rare, extremely painful, debilitating autoimmune disease with everyday pain rated between 4-10 out of 10, and an average DLQI rating of 10-18; that’s more painful and debilitating than most well-known chronic, disabling medical conditions, and on par with the pain experienced by cancer patients. 1-4% of the world’s population is affected by it, and those are only the people who have overcome the shame and embarrassment of the condition to get a diagnosis. In fact, it is an invisible illness; the people affected by it hide it for as long as possible, and it’s usually in areas covered by clothing. It is also shown to be hereditary and often runs in families. There is no cure. It can be semi-managed, but that is all.

In the UK this is HS Awareness week, and those of us affected by this disease in the US are adopting this week to promote HS awareness as well.

Until this point, I have only told family about having HS. I have it in an embarrassing area that is difficult to manage, and it hinders my ability to walk, stand, and sometimes even sit on a regular basis. It makes it so that I can only leave my house once a week due to the mess and pain. I’ve had to change a lot about my life due to it. After my car accident it was easier to blame my HS flares on my back, and I still do to people who don’t know. I can’t wear certain types of clothing, going to the bathroom is a struggle at best, and I can’t be as active as I would like to be. The consequences are far too great. It has become especially bad since having my daughter. I was officially diagnosed about two years ago, and my current flare up has been three years long. Three years with no relief! This is part of the reason I decided to begin writing in the first place—it’s something that I can do from home, and it distracts me from my pain.

I suffered for fifteen years before I was diagnosed. I had been running a high fever and unable to keep down food or water for twenty-four hours, so my husband made me go to the ER. They couldn’t figure out why my white blood count was so high, but I wasn’t going to mention the oozing, open wounds I had because I was too ashamed. My husband finally suggested it might be from the sores and the ER doctor insisted on having a look. It turned out that one of my boils had become infected. The ER doctor sat me down and walked me through the HS diagnosis, and recommended I go see a dermatologist, as they are the specialists who are trained to handle HS. She also told me that Hidradenitis is NOT contagious. You cannot catch it from anyone. It is not due to poor hygiene. It is not due to being overweight—though sometimes that can exacerbate it. It is not due to anything within an affected person’s control.

Hidradenitis is a vile disease, and I’ve never made pains to hide it from my husband because he’s seen me naked pretty much since the onset of my HS. He has been by my side as it has become progressively worse, and he has seen how debilitating it has become. I am extremely fortunate that he handles the disgusting nature of this well. I am in several support groups for people with HS, and many in them have lost partners due to them not being able to deal with the symptoms of this disease.

I saw the dermatologist again last week, and we discovered that I am now at stage three. In the past when I was stage two, I had been recommended to have surgery to remove most of the skin on the lower half of my torso and replace the skin with a skin graft from my thighs and hips. I didn’t have the support to be able to have a surgery like that, as it will require weeks of recovery and I have a young child at home that needs constant supervision. I still don’t have that kind of support, so surgery is off the table.

A recent discovery has been that the drug Humira helps some people suffering from HS, so after talking with my dermatologist we are going to try that. This has come about due to increased awareness about HS, so I am working through my shame and writing this in the hopes that someone who has it might read it, and get the help they need. [Or that someone who knows a person with these symptoms might encourage them to look into HS further and talk to their doctor about it.]

It is embarrassing, but those of us suffering through this need to put aside our humiliation and speak out in the hopes that maybe some day, there will be a cure, and we can regain some semblance of having normal lives.

If you want to support awareness, please share this post or visit http://www.hs-foundation.org and make a contribution. Also, if you shop at Amazon, [like where my books are sold!] why not go through Amazon Smile and set your charity as Hidradenitis Suppurativa Foundation Inc? When you use Smile, Amazon donates 5% of your purchase price to the charity of your choice! It’s easy and painless–unlike HS.

To find out more about Hidradenitis Suppurativa, please visit No BS About HS.

140 BPM: A Sob Story

It’s tough to write when you’re sick.

It’s not the constant pain, or crushing exhaustion–which are limiting on their own and make me want to do nothing but lie in bed–but the horrible muddled brain that comes along with it. The sitting, and staring, not comprehending the words of your outline, and being unable to do anything except look at that blinking cursor; wishing you could think of anything except how rundown you feel. In fact, this post is an effort to shake the cobwebs from my brain, and I still feel like I’m doing it poorly.

Instead I’m binge watching Fuller House because it’s the only thing my daughter will allow on the TV that isn’t cat videos on YouTube. [She calls it the “Babysitter Show”] And despite the fact that the show is aimed at me, a person who grew up watching Full House, I kind of hate myself for liking it the little bit that I do. [But at least it’s not the same cat videos over, and over, and over again.]

Definitely not cat videos

It’s also difficult to write through depression, which I’ve struggled with off and on for a good portion of my life. Fortunately it wasn’t so bad that I needed medication, but it’s tough to avoid when you have a chronic illness. [It pretty much comes with the territory when you’re in near-constant pain.] And not only that, but I have several injuries from accidents before this happened, so basically I’m a mess of a human being. The worst part though, is that it hasn’t stopped. I’ve lost weight this past year. A lot of weight. I originally thought it was from stress–losing our house and having to be separated from my husband for two and a half months was pretty stressful. Add in not eating much and deciding to quit soda, and you can see where I thought the weight I lost was just from those things. It didn’t seem like a problem until my husband and I were able to be together again, after we got into our new place. I fell back into old habits: Soda. Fast food. Chocolate. But I still kept losing weight. In denial that anything was wrong–and partially in defiance of it–I started eating like an idiot.

My spirit animal

I’m supposed to eat a ridiculous amount of salt because of my stupidly low blood pressure. [So low that I pass out if I’m not eating enough salt.] I’ve also discovered that sometimes I need to eat red meat to feel better, on top of the salt intake. So this turned into an excuse to eat out–a lot. Burgers, Steaks, Fries… I have low cholesterol too, so I thought a little indulgence here and there couldn’t hurt. Until it turned into three times a week, and still my pants began to fall off of me. Being overweight most of my life, I didn’t want to complain–after all, who would believe that unintended weight loss was bad? The people I did tell congratulated me or said things like, “Oh, you look so good!” Any doctors I had seen for my back pain [from a car accident several years ago] listed weight loss as something that would help me. Unfortunately, the symptoms of my [yet undiagnosed] autoimmune disease were getting worse as the pounds melted away, which I wasn’t surprised at. While I was pregnant with [and after I had] my daughter, I lost quite a bit of weight. My symptoms flared up and I gained weight on purpose to get back to my “normal”. Despite sounding like a crazy idea, it worked.

The weird thing is that I wasn’t officially diagnosed with anything yet, I just knew I felt better when I was heavier. It wasn’t until a year and a half ago that I was finally diagnosed with an autoimmune disease. [And it’s vile. I’m not going to even name it, because in addition to being painful, I’m that embarrassed by its symptoms. Sorry.]

But that was a bit of a digression. Some time after the holidays I started feeling really run down, realized I was being an idiot, and began eating better. Cut the fast food back to once a week [sometimes two–not gonna lie] and cut the soda back to only when eating out. I broke a tooth on Superbowl Sunday, and was given antibiotics so it wouldn’t get infected before we could extract it. A week later, I ended up with a horrific rash all over my body. Went to the ER, where they thought it was chicken pox. I assured them it wasn’t, as I’ve had both it and shingles before. Twice. I also found out that in the past ten months, I’ve lost over forty pounds. Without trying. Despite cramming myself full of junk.

They finally did a blood draw and determined it was an allergic reaction to the antibiotic. Pulled me off that and put me on Prednisone. No qualms from me there–I love Prednisone. I hope to have it prescribed to me the same way a Vicodin addict hopes for painkillers. It is the only way I get any relief from my chronic suffering. [Because it suppresses the immune system.] After three days on the Prednisone I felt absolutely amazing. My rash was gone, my bloat vanished [the bloat I hadn’t realized I had], and the symptoms of my chronic illness were in regression! I had the tooth yanked at the beginning of March, and tried to take a picture of my swollen face to send to my mom a few hours after the procedure. But I didn’t look swollen–at all. Yay for Prednisone!

A few days later I ran out of medicine and started to feel shitty again–headache, lightheaded, fatigued. Upped my salt intake, but to no avail. Now I noticed a new symptom: my heart felt like it was going to leap out of my chest. All the time. I started monitoring my heart rate with an app on my phone; 80-ish beats per minute at rest, over 100 with mild activity. Soon even walking across the room left me breathless. [and with a heart rate of 120-140 bpm.] One night a week or so ago I felt a crushing pressure in my chest, and my husband convinced me to go to the ER.

After they determined I wasn’t having a heart attack and didn’t have a blood clot, they recommended that I see a cardiologist and turned me loose. The problem with that is that since my husband switched jobs, I don’t have health insurance. I called around and was put on a waiting list at the only low-cost provider in town–a five month long waiting list.

Part of me wonders if I’ll be around in five months. Part of my husband wondered if I’d be around in five months also, and he told me that we were going to dig into our savings and have me see a specialist. I protested. We were saving for a new car–ours is on its last legs and should probably just be given a viking funeral. He insists.

He’s right. I’m used to putting things before myself: my daughter, my husband, my pets, the car–even housework. [I can’t tell you how many times I’ve thrown out my back vacuuming. I am a garbage person.] Now I’m starting to get nauseated after I eat, no matter what I consume. It’s pretty awful. I’m tempted to stop eating altogether. If you follow my Instagram, you know I love to cook, [and eat!] so this is terrible.

I’m at a loss. I have no idea what my body is doing any more.

So this coming up week, I’m going to see an Internist. I have no idea how much it’s going to cost. This scares the crap out of me. But at the same time, I’m more afraid of dying. Tachycardia [an increased heart rate] will just kill your ass over time. Within five years your chances of dying go up something like 75% statistically. I don’t want to spend five years feeling like this. I don’t want to die either. Period. End of story.

I’m worried it’s more complications from my autoimmune disease. I’m also worried it might be cancer. [My whole family has had it, and I found out I grew up in a secret nuclear fall out zone, so it’s not farfetched.] I’m worried it’s another autoimmune thing, because they travel in groups. I’m worried about a lot of things. I always have been. I’m just… not used to worrying about myself.

You’re probably thinking that’s how I’m going to end this; that if I had thought of myself sooner, I wouldn’t be so sick. Real life doesn’t work that way though.

The truth is that I would have spent a lot of money that we couldn’t afford to spend, on a lot of doctors, who would have dismissed my symptoms because I’m fat. It’s happened in the past, and I’m also worried it’s going to happen next week, despite telling them about all the weight I’ve lost. After I was diagnosed with my autoimmune disease, I told my primary doctor about it, and she laughed at me. Told me I couldn’t possibly have that because she’d never heard of it showing up where it affects me! She told me to lose weight to fix it. I was embarrassed and furious. Firstly, I knew that losing weight exacerbated it; secondly, it was common for it to appear where it affected me; and finally, this family practitioner was dismissing the diagnosis of someone who specialized in autoimmune diseases! In some ways, I’m not sorry we lost our insurance because I never have to see or pay her condescending face again.

There is no happy ending, or simple moral to this story. Just fear and uncertainty.

Real life sucks like that.


P.S: Normally I would have written something like this in about two hours, but it took me the entire day to finish it due to brain fog. Ugh. Wish me luck with my appointment next week! I’d love to start feeling better and get back to writing.