Living with Hidradenitis Suppurativa

Living with Hidradenitis Suppurativa

Each day I live, I carry this on me, but that doesn't mean that it defies who I am.
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Within a single day, I can experience different levels of pain varying from a feeling of an itch (if I'm lucky) to someone twisting my parts of my skin into little circles. However, most people wouldn't notice that just by looking at me.

I have a chronic skin and gland disease known as Hidradenitis Suppurativa or HS for short, because even I can't say that first name. I have also heard it as Acne Inversa (AI) but its not nearly as common. This disease is something that I have lived with since right around the age of 10.

According to the Hidradenitis Suppurativa Foundation website, HS is described as, " a chronic, non-contagious, painful and quality of life impacting skin disease that causes boils to form in the folds of the skin."

Which basically means, and the way I describe it to my friends, is that I have very deep painful and huge pimples all over my body.

Up until the past few years, there hasn't been much information on this disease. I went through life just accepting that I will always and forever be in some amount of pain or constant discomfort. There is a campaign that recently came out, #NoBSaboutHS, that has allowed those affected to share their stories and experiences with the disease. I know when I first saw the ad for it, I bawl cried.

I won't get into the gory and disgusting details of HS but if you want to see it for yourself, just do a google search. However, since they are all over my body, I have to wear, act, and eat a certain way to try to avoid the pain. I absolutely cannot wear jeans that are too tight in the midsection. They will rub the wrong way and cause one or many to form. If one on my leg recently drained, I have to walk a certain way to make sure it doesn't hurt.

I have always been extremely hesitant to discuss my disease. Mainly because it's embarrassing and I feel like everyone would judge me the moment they saw the areas. I hardly ever wear dresses, sleeveless shirts, or shorts because that is when it shows or is worse in.

I would be shy to open up to partners about it, because I was scared that they would think it was an STD, which, as previously stated, we know its not. It is genetic; my father had it, my cousin has it, my grandfather had it, etc. I would hide away, turning of lights if things got above pg-13 and just refused to open up about it.

Each day I live, I carry this on me, but that doesn't mean that it defies who I am. Most people don't realize that I have this disease. I give back to my community, I have amazing friends and family, and I have hopes and dreams that I do not intend on stopping to achieve. I am Leah Schoolcraft and I have Hidradenitis Suppurativa.

For more information about this disease, symptoms, treatments and resources please visit http://www.hs-foundation.org/what-is-hs/

Cover Image Credit: Leah Schoolcraft

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An Open Letter To The Meadville Medical Center And Its ER Staff

When did kindness become a deserved thing in the healthcare field; and only if you're not on drugs?
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Yes, that cover picture is me, coming off a ventilator...at Magee Women's Hospital in Pittsburgh, a two-hour drive from my house, not at Meadville Medical Center.

This is very difficult to write. We live in a small town, and you are the only hospital for over twenty miles. In fact, I live so close to you, that I can see your rooftop from my back garden. I can walk to you in about ten minutes if it’s not overly humid out. The Life Flights pass over my house as they arrive at and leave your facility, and my young daughter and I pray for every one of them.

My daughter had to call an ambulance on May 30th, as I had a sharp and horrible pain overtake me so suddenly, that I thought my neighbor (who I threatened to report for dealing drugs) had shot me through the dining room window at first. There was no blood to be seen, but the pain was so severe, that combined with the cold sweats and dizziness, I was genuinely afraid I was about to die.

I can’t express in words how proud I was of my girl as she explained to the 911 operator what was the matter and where we lived. She was brave and helpful as they took a blood sample, handled what I later learned was a seizure, and kindly got me into the ambulance from my difficult entryway. She called her Auntie and calmly told her to meet me at the ER. And while memories of the horrible experience I had in your ER twenty years ago still haunted me, the care and attention the ambulance drivers showed me encouraged me that I would be okay.

If only.

There were so many people, and I was half delirious with pain and inexplicable symptoms. Thank God my sister in law, Sheri, was there to help me fight for my life. For the sake of our small town and six degrees of separation, I will call them Nurse A, B, C, and D, and Doctor H. Your staff literally, unapologetically bullied me within an inch of my life.

When I arrived, it was apparently Nurse A who triumphantly announced to everyone involved in my care that I was on drugs, case closed. Despite Sheri and I repeatedly telling them that I hadn’t taken any narcotics, and I won’t take anything stronger than Motrin 800, they persisted in asking what I took. At one point I heard Sheri saying, “She does everything naturally, you're wasting time.” No one cared.

When Nurse A informed me that they needed a urine test, I told her to straight cath me, as I couldn’t stand up. It was Nurse A who told Doctor H that I faked two seizures on the way from my house (I am still amazed by her mystical powers that she could surmise this), and insisted again that I was faking everything. With utter disgust Doctor H said, “She can stand, get her up.” At Sheri’s protest, Nurse A reiterated, “If she can move her legs she can stand.” My legs, which were almost involuntarily moving to find relief from the pain in my abdomen, gave out on me when she insisted I put myself on the bedside commode. I passed out again and urinated on her.

When I woke up to Sheri frantically calling my name, I was greeted by an absolutely disgusted Nurse A, who complained that she needed to go change her clothes, and rolled her eyes at my faking another seizure. She informed everyone who came in next that I was faking these symptoms, and four attempts to straight cath me failed. In that moment, I was sure I was going to die.

Everything after that came in blurry and fragmented vignettes, like an awful out of body experience. There were Nurses B through D or more, all repeatedly asking me what drugs I took. Everyone scowled and frowned, passing on the information that I was faking everything. There were four of these nurses when I woke up on the way to a scan, and all but one asking me what drugs I took, and telling me to stop faking as I hysterically screamed that I could not breathe when I lay flat. I was terrified, confused, out of my mind, and unable to breathe when I lay flat, and they reported that “she hyperventilated herself” in the scan lab.

All the while, Sheri valiantly insisted they would find no drugs in the blood work, and that I probably hadn’t been to a family doctor in years. I lay in your ER cubicle and reconciled myself to God, convinced that I was going to die and be labeled a drug addict.

At some point, something shifted, and suddenly I received the blanket I had asked for hours before. Apparently, my temperature had dropped so low, their fancy thermometers couldn’t read anything. I remember a young man trying to find a vein and saying, “Oh my God, I’ve never seen anything like this. I’m not trying again.” My head was elevated, and the panic of not being able to breathe alleviated somewhat.

Suddenly Doctor H was almost kind, and I heard him telling Sheri something about “a mass” and “blood in her abdomen” and how some other hospital was better equipped to help me. She told me she okay-ed it, and I recall telling her, “I trust you. Just get me out of here.”

In fact, knowing someone else would care for me gave me such peace, that I literally lay completely still as an older man inserted an IV line into my neck with no anesthesia.

We assume the blood work came back and the scan verified what we desperately tried to tell everyone from the beginning; I wasn’t on or seeking drugs. But there was no apology from Nurse A, her fellow nurses, or Doctor H. I may be corrected, but I spent five or six hours in your ER defending myself to the same people who should have been fighting for my life.

As I lay there, talking to Yeshuale, three people in what looked like tactical suits came alongside my bed. The first was a woman who looked like she was speaking into a walkie talkie. Behind her two men. I thought to myself “Oh, state cops. I guess I’m just going to die in prison.” I was so out of it, confused and weary of being asked what drugs I took, I believed your ER staff had called the police and they had come to take me away. All I could think of was what would become of my young daughter.

Thank God, I was mistaken. The blonde woman wasn’t a police officer, but part of the helicopter team, on the phone with Magee in Pittsburgh so she could begin administering blood to me. Blood. Something your staff considered less important than accusing me of using and seeking some weird drugs. Behind her, a tall, blonde man smiled at me and explained that he was taking me in a helicopter and I would be fine. It was like hearing from an angel, and I remember saying, “Todah, Yeshuale!” repeatedly in my head and in a whisper. “Thank You, Jesus!”

Four blocks away, my daughter and the friend she was staying with waved as we flew over my house.

To my surprise, I woke up two days later, attached to a ventilator, one of my sister friends sitting beside my bed. I learned that I’d had two masses in my uterus, which tore itself open and bled into my abdomen. I’d lost four liters of blood and had a transfusion in the Life Flight. When they took the vent out, (my friend took the picture above) I made a joke about being a tough Jersey girl as I signed to the ICU nurse, but inside I was an emotional wreck. Still, as the days went on, I determined to treat everyone with kindness, and was treated the same way at every turn.

Kindness. The one thing I never received from your staff.

What was so special about me that your staff felt interrogating me about my apparent drug use was more important than helping me? My address? Because for some reason all the drug dealers in town seem to want to take over my block? So, we’re all on drugs, then? Do you realize that half my neighbors brag about going to your ER to get pain pills, and how easy it is? I never asked for anything but a Tylenol, and that was on the Life Flight. So, again I ask, what made me so unique?

And, I must say, it’s not even that your staff didn’t believe me. They were mean, hateful even. Rolling their eyes, talking about me like I wasn’t there, saying everything I did was a ruse to get drugs. When did it become okay to treat anyone like that? How was it alright for your nurse to walk in and determine that I was on drugs? How was it alright for her to set the tone of disbelief, unkindness, and abuse? How was it alright for the doctor to allow this and roll with it?

Yes, I said abuse. When someone is screaming that they can’t breathe and you tell them to stop faking, that is abuse. When you berate someone, and accuse them of something to the point where they believe they’re being taken to jail to die, that’s abuse. When you refuse to give someone a blanket, hold them down to the point where they’re bruised, that’s abuse. When you waste time to the point where an ambulance won’t get to the next hospital fast enough… that’s abuse. Your staff verbally, emotionally, and physically abused me.

Not only were they abusive, but they were comfortable with it. Your staff was comfortable with it, and didn’t care what it would cost me or my family. All but one nurse, who Sheri now tells me insisted that there was something wrong with me and took me for the scan. That nurse saved my life. People are comfortable with abuse because they get away with it. Abusers get smug, arrogant and even careless, because those they abuse say nothing. Your staff was smug, rude and uncaring to the point that they displayed a sick sort of disgust for me that was completely obvious. My sister in law later confirmed to me that it wasn’t all in my head.

At what point did this behavior become acceptable? Is it because you’re the only hospital for a 30-minute drive?

And, so what if I had been seeking drugs or high on some unknown concoction? Would that have made it okay for your staff to treat me thusly? Would Nurse A have been justified in declaring my altered state and treating me like garbage? Would Doctor H have been justified in how he treated me? When did nursing and healing give anyone that sort of power? When did people cease to be worthy of kindness, quality health care and gentleness based upon their drug use, or the address they live at?

When did you decide who deserves to be treated with dignity and respect and who does not? When did your medical staff earn that right to decide also?

If we’re completely honest, most of the people I know who abuse pills go to your ER at least once bimonthly to get refills. Your ER physicians pass out opioid scripts like candy and then mistreat the people they’re supplying? Thanks to you, I must hide the pain medication I loathe to take now, because someone will surely break in to my home and steal them if they know I have them. You, and other hospitals like you, are feeding addicts and creating innocent bystander victims like me, but that’s another conversation.

This is difficult to write, because you have your hooks in all over this town. This is difficult to write, because the trauma of that night is still fresh in my mind, and I often cry when I think about it. This is difficult to write, because the reality that I have had to now teach my child to ask any ambulance we ever need to call again to take us to Erie shouldn’t be necessary. This is difficult to write, but it needs to be said, especially since I’ve been finding out that I’m not the only person this has happened to.

You need to address these issues. You need to stop handing out scripts like promotional coupons, and perhaps you won’t have nurses and doctors assuming everyone’s on drugs or seeking them. You need to discourage the abusive and toxic behavior of your staff, and hold them accountable when patients complain. Let me put this into perspective for you: I’m pretty sure Nurse A is the same age as my oldest daughter, and my child would eat mud before she treated anyone like that. Why? Because my kids were never allowed to behave that way in the first place, but to stay on topic, she grew up with consequences, and as an adult still recognizes their severity.

As the events of that night become clearer to me, and I continue my peaceful, miraculous recovery at home, I am determined not to hold on to bitterness about what happened to me at your ER. I am determined to make the most of the second chance at life I’ve been given, and leave your abusive staff in the past. I’ll probably pass some of them in the super market, or sit behind them in church, our town is so small. And while you and your toxic staff will cease to haunt my future, I will surely haunt yours. Nurse A, Doctor H, and Nurses B through whatever… will never forget the night the woman with the blue hair nearly died because they were too busy wrongly judging to actually care.

I am determined to walk out the rest of my life in kindness, the very discussion I had in a blackout with God while your nurse accused me of faking a seizure. I will pray, hoping with all hope that kindness will once again be requisite for employment in your ER and every area of your corporation. Believe me, it’s possible and good for profits. The entire time I spent in Pittsburgh at Magee I never encountered a single unkind staff member from the surgeons to the housekeepers.

I know you can do it.

Cover Image Credit: Heidi Owens

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Ariana Grande Is Bringing Much-Needed Attention To PTSD, It's Time We All Learn What It Really Is

"not a joke."

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This week, Ariana Grande posted a picture on her Instagram that wasn't your typical selfie or self-promotional snapshot. She uploaded a picture of a comparative brain scan and her brain scan side by side to show what her PTSD looked like on the biological level. The picture was accompanied by the stark caption, "not a joke."

It isn't just her. Survivors of school shootings have repeatedly shared stories about the grief and stress they experienced after watching their friends die at the hands of gunmen. Studies have shown that PTSD can occur in anyone, regardless of age, ethnicity, gender, sexuality, etc. It is no longer the sole purview of shell-shocked soldiers returning from distant wars. It is affecting everyone from celebrities to school children. So what exactly is it?

PTSD stands for post-traumatic stress disorder. It is a psychiatric disorder that can occur when people experience or witness traumatic events, which in Grande's case was the shooting at her Manchester concert in 2017. She herself has said so.

The Diagnostic and Statistical Manual or Mental Disorders, or DSM for short, is America's (and to a close extent, Europe's) handbook of mental illness. According to the DSM, symptoms of PTSD include intrusive thoughts such as repeated flashbacks, distressing memories, or nightmares of the event. People with PTSD also actively avoid reminders of the event, such as associated people, places, objects, or situations. They may have general feelings of fear, anger, or sadness, as well as hopelessness. They may have memory problems, sleeping issues, irritability, and begin to distance themselves from friends and family as a result. It is a terrible condition and one that can lead survivors of traumatic events to suffer long after.

According to the American Psychiatric Association, an estimated one in 11 people will be diagnosed with the disorder in their lifetime.

Many more who have it will not, whether it is because they don't want help or cannot afford it. Women are also twice as likely to have PTSD than men. Whether this is because of the pervasive fear and threat of violence women live with, or other reasons, I will refrain from commenting. Causes of the disorder include physical assault, sexual violence, gun violence, abuse, accidents, and natural disasters, amongst others.

Of course, the rumor mill has started to dredge up other sordid details from her past, trying to piece together a timeline of her trauma and gauge whether or not her condition was "real enough." But it is useless and even dangerous to toss around armchair theories like this. Trauma means different things to different people and trying to make value judgments is not remotely a good idea. It also adds to the stigma surrounding mental illness, when sufferers continuously doubt the validity of their condition and may refrain from seeking help because of this self-doubt.

One of the most important factors in helping people with PTSD is to support them. Social support can make a huge difference in recovery and whether people develop the condition in the first place. Of course, someone can have the most supportive family in the world and still develop the condition. As Grande's post demonstrates, PTSD is a hard biological reality that can take anywhere from years to a lifetime of recovery.

As with much of psychology, it can be tempting to dismiss it as a lack of resilience or turn it into a zeitgeist buzzword. But sticking our heads into the proverbial sand isn't going to help anyone. Neither is dismissing the very real trauma of violence by ad hominem attacks describing the survivors as moody-sensitive-weak-immature or whatever term the oldsters like to use these days. Much like the soldiers before them, they have seen people gunned down in front of their eyes while they were filled with a dread fear for their own lives.

Social media means we can no longer turn a blind eye to the pain so many of our peers are living in. So we must face it, head-on. We must support those who are suffering and reduce the stigma and self-doubt that keep survivors from accessing the help they need. We can start by listening to their stories and sharing information. In the words of Ariana Grande's Song "get well soon," "you shouldn't be alone," and you are not.

A good start is talking to your doctors or other health care providers. If someone you know and/or love has PTSD, support them. If you yourself have it, try and find a counselor or therapist to get help. If you feel conscious of being the focus of attention, there are support groups for trauma survivors, and even for the relatives of people with PTSD. The National Substance Abuse and Mental Health Services also has a number that you can call for further information for yourself or someone else at 1-800-487-4889.

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