patient lying in hospital bed

When I Told an ER Doctor 'I'm Here Because I Need Your Help'

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I’ve never found the emergency room to be a particularly amicable place. It’s an assembly point for people in discomfort, be it from broken bones or food poisoning. However, when you have a rare disorder and a complicated medical history like me, it hasn’t always been the place where I could actually receive help.

I was discharged from the hospital on a Wednesday morning after a routine and scheduled visit to receive all the intravenous treatments I require to continue breathing. By Thursday evening, the symptoms I had initially associated with common side effects of my treatments worsened to such a degree that I reluctantly made my way to the ER.

I say “reluctantly” because even though one would expect someone with a complicated body to feel at ease around doctors and nurses, I’ve found they can dismiss most of your symptoms by claiming you’re “overreacting” or “just looking for drugs” if they aren’t familiar with your condition.

You see, the ER doctors who have treated me simply don’t seem to listen. On that Thursday evening, I told them I’ve been on corticosteroids for several years. Because of this, my body doesn’t always present with symptoms of infection in a normal way, since my immune system is suppressed. I think my first mistake was informing the doctor that I knew this. Some doctors are so used to being much smarter than their patients, so as soon as a patient possesses anything more than common medical knowledge, they seem to be incredibly offended or intimidated. I personally believe this is because they’re aware of the fact that I know more than them when it comes to my body.

The doctor continually sighed when I opened my mouth, and I could see that every time she realized I was about to speak, she wanted to roll her eyes. When I told her my primary specialist was in another city, she continued by saying: “You’re making this very difficult for us.”

I was so overwhelmed by emotions of rage, frustration and, worst of all, helplessness. I was lying in a hospital bed surrounded by doctors who didn’t understand my body and didn’t appear to want to listen to me. But I was lying in a hospital bed, which meant I was depending on them to help me — and it didn’t appear that anyone was going to. I was reluctantly dependent. I was weak. So the only words I managed to utter in response were: “I am here because I need your help.”

I hope that one day the ER will be a place where patients with complicated medical histories like me can get help they need, but until then, I’ll just have to write a post about every single bad experience I’ve had in the hope that someday a medical student, a doctor or a nurse might read it and realize they have the power to break this cycle that some patients may go through.

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To My Fellow Stripy People Facing the Holidays With a Rare Disease

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Happy Holidays and Merry Christmas to you, my fellow stripy people.

Many of us struggle this time of year. Some of you are watching loved ones eat whatever they want while you are stuck with a choice or two of food you prepared and brought for yourself. Some of you will be watching others celebrate with the kids you have decided you won’t have because of your genes, or you watch your child(ren) struggle through the festivities right along with you, or you watch others struggle. Some of you are experiencing the first holiday season without a loved one. Some of you are experiencing criticisms about how you go about relieving your symptoms and can’t face another get-together. I could go on for hours. There are so many things we struggle with this time of year.

But I have something to tell each one of you: You’ve got this. You’ll make it through this.

You, my dear friend, are a zebra in a crowd of horses, a standout among the mere ponies around you. You, my friend, live your life escaping lions in the prairies, leopards on the plains, and crocs at the watering hole. You, friend, are the picture of bravery. Wear your stripes proudly. You’ve earned them.

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Thinkstock photo by wowwa

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10 Things Parents of Children With Rare Diseases Really Want for Christmas

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Christmas can look different for parents of kids with rare diseases. Instead of celebrating, it can often be a difficult time. When visiting relatives with a child who is wheelchair-bound, has a feeding tube or has behavioral challenges, the trip needs to be planned and possibly scrapped.

So in honor of our family and other families (and others who are possibly facing their first year without their child), I offer a candid look into what many of us want for Christmas. I hope that friends and family will give us what they can toward these things — hope and understanding. And sometimes, we just need a little helping hand.

Here’s a rare disease parent’s Top 10 Christmas wish list:

10. An appointment where I walk in and the doctor knows more about my child’s condition than I do.

9. The ability to watch TV shows and movies where people die without falling into a puddle of tears afterwards.

8. A magic “what is wrong” detector that I can wave over my child when he can’t tell me what’s hurting him.

7. A pair of rose-colored glasses, so I can look forward to the future instead of worry about what it holds.

6. A year with no funerals.

5. Treatments that don’t hit our insurance out of pocket max every single year (but hey, having a treatment at all is number 1 on many parents’ lists).

 4. A radio station that doesn’t play music about kids growing up, dancing at their wedding or Christmas shoes.

 3. I want to drive a convertible, not a handicapped accessible van with a “go bag.” Or I’d rather it be a Jason Bourne-type of go bag, and not a we’re-going-to-be-stuck-in-the-ER-all-night-and-probably-the-hospital-all-week-so-we-better-have-diapers-clothes-toiletries-and-snacks kind of go bag.

2. In fact, I’d really like to have a locker at the hospital, kind of like what you have at the gym. It’s where I can keep all my necessities, grab a private shower and maybe even work out. We’re probably at the hospital more than the gym anyway — better investment.

1. To watch my child grow up.

This is what I really want for Christmas.

A version of this post originally appeared on MelissaHogan.me

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