To ER or Not to ER: That Is the Question When You Live With Chronic Illness

Life with chronic illness means inevitable trips to the ER. We all hate it, loathe it, most will do anything to avoid it, but it’s a necessary evil. I’ve joked before that we can have an arm half falling off and will still play “Let’s Make a Deal” with our doctor, saying, “Are you sure I really have to go? Can’t I just take something in my arsenal of medicines?” In the end, you bundle up in the car (many of us have “to go” bags at the ready filled with everything we need – more about that later) and make the trip to our local ER, resigned that whatever we had planned for the day is now shot as this is never an “in and out” visit.

For me, living with lupus, fibromyalgia, asthma, hemiplegic migraines and a host of other “party favors” that have come along, I have been warned to “report any new, odd or troubling symptoms immediately” to my doctors. I’ll be honest folks; if I reported every new, odd or troubling thing my body did on a daily basis, I would never leave the hospital. Life in the Land of Lupus is never dull, so you learn to only notice the really big things.

Pain is constant, pain is chronic, pain is always there. Sometimes it’s worse, sometimes it’s better, but on average I live at about a “4” on the one-to-10 scale and I get used to it. If it spikes to a nine (I never call a “10”) I take something and deal, but if it’s in a “troublesome place,” a.k.a. chest or head, then I play the “Pains of the Past” game. Is this a familiar pain? Stabbing, throbbing, slicing, dull, radiating, constant or intermittent? If so, what did I do in the past? Repeat as necessary. If this is new, go directly to your local ER, do not pass go, do not collect $200 (but be ready to pay the copay as many now collect at the visit) and be ready to answer the above questions – over and over and over again.

Sadly, by this time, as a “frequent flier,” you are probably known at the ER already and some of the staff may even greet you as you come in (remember the greeting “NORM” as he walked into the “Cheers” bar – there are times in my fantasy life I feel like that at the pharmacy, ER, doctors’ offices, etc…). By this time, the ER is no longer an “exciting” experience for anyone involved.

In fact, because my children are young and need their dad, often they just drop me at the curb and I do this alone. It’s not ideal, but you do what you have to and I refuse to expose my kids to any more of the ugliness that is life with chronic illness. It has robbed them of too much of their precious childhood, so we try to make this as routine as possible. Does it truly suck to go through this alone most times? Yes. Having an advocate by your side makes all the difference in the hospital and having to be the patient and fight for yourself is not easy (that’s a whole other topic) but it’s reality for many of us who have kids, so you make do and put on your big girl panties (clean, always – remember what Mom always said about going to the hospital!) and soldier on.

Remember that “to go” bag I mentioned? Here’s where it comes in really handy. Life with chronic illness means a lot of time in waiting room. They call them waiting rooms for a reason! My handy-dandy list of items to have on hand:

1. Up-to-date list of medications! Most crucial. Every “professional patient” knows that trying to list all of your meds with dosages (over and over again) is exhausting and tough enough on a good day but when you are in a medical crisis it can truly save your life. Also include any medication allergies!

2. Up-to-date list of all medical conditions. Handy tip – there is an emergency button on iPhones that anyone can unlock without your passcode where you can load the crucial information.

3. List of doctors and their phone numbers. No doubt, like me, the “D”s in your phone are a “who’s who” of doctors and specialists. (My friends all know – need a doctor, ask Amanda! I’ve fired more doctors than most will see in a lifetime!) This is especially important when you have a “complex” medical history. That’s their favorite term for me: “medically complex.” Most ER docs will have little, if any experience dealing with your disease(s) and hopefully will consult your doctors.

4. Tablet/iPod (iPad, Kindle, etc…) – something you can use to read, entertain yourself, contact social media, connect to the outside world and distract yourself from the chaos around you. Ear phones are also key to drown out the noise and calm yourself when needed. Most hospitals have free wifi so if you have Netflix, Hulu or other services it’s a good time to binge on a fun, distracting show. Love to read? Great time to dive into a new series. That’s the nice part of the electronic component – finish your book at 3:00 a.m. while you’re waiting for the results of the CT scan? Go online and download the next one in no time. I swear, what did our chronically ill ancestors do? Poor souls forced to read the one book they came in with? How did they survive?

5. Your phone. You may be like me and not let anyone know when you’re at the ER or you may post it to your Facebook page – everyone has different ways of dealing with their chronic illness and no one way is right. For me, I don’t like to worry anyone until I have to. As one doctor said to me, “With you it’s either life-threatening or nothing – just a part of everything else – we can’t play around.” Um…OK?! So I can’t sound the panic alarm every time something goes wrong. I can’t do that to the people in my life nor do I need that amount of drama around me.

Usually I let a very few core people in on a “need to know” basis. They are my #squad, my village, my lupus support group – the people on whom I can, and do lean for my support in times of crisis. The people who don’t tell you how upset you being in this position makes them feel. They are the people who are there to listen to your fears and pain and listen, really listen, without judgment or preaching. They are the people in your life you know you can count on in good times and bad. Family isn’t always blood and I am blessed to have some incredible people in my life who are there for me and my husband and children day in and day out. But I digress. This is yet another topic for another post. So, bring your phone so you can keep in touch with those who need to know what’s going on.

6. Your chargers. With many electronics comes much battery. I even stick an extra battery charger in the bag just in case. My husband once got a seriously cool charger that has three different prongs for three different kinds of devices at a conference. I totally stole that sucker from him and love it for its versatility. (Maybe I should look into becoming a spokesperson for some of these companies – I could totally nail that. “Spending a lot of time in waiting rooms? Don’t let a dead iPhone battery hold you back. Try the new Super Battery 2000!”)

7. Magazine, sudoku or something non-electronic to read/do. Sometimes electronics do die and/or the light can bother your eyes.

8. Comfort items. Lip balm, eye drops, bottle of water, coloring book, soft blanket, anything that brings a little comfort to you in this very uncomfortable situation.

9. Patience and your sense of humor. My lupus support group and I like to joke about an ER bingo game of “common sights in your local ER,” such as a patient wandering the halls with the back of their gown open, giving everyone a “show,” or a patient screaming, “Help me, help me! Nurse, nurse!” at the top of their lungs nonstop. I’d love to hear yours in the comments!

The ER can be a few hours or sadly a day or two depending on how backed up things are. The gurney is ridiculously uncomfortable and things are understaffed and the staff is overworked. Complicated cases, like mine, take time and resources, two things that are in low supply in the ER. There’s often nothing “open and shut” and the doctors and nurses often know less about our diseases than we do. I’ve done more lupus awareness educating in the ER than in a month of lupus awareness posts. Occasionally, I’ve gotten a sympathetic nurse who has a friend or family member with lupus who understands and I don’t have to explain and that’s a blessing. Other than that, it’s a whole lot of “Wow, you’ve been through so much!” (tell me something I don’t know) and “You’ve got such a great attitude about things.”

Here’s my take on surviving the ER when you are a “professional patient.” You have no choice but to have a great attitude. Patients who are nasty and belligerent do not get better care. Because I’m usually on my own, I have to be my own advocate and willing to stand up for myself and my rights while being pleasant and polite. This is a hard line to walk, as you need to be strong yet sweet. You are the “good cop” and “bad cop” in one while lying in pain on the stretcher. You’re scared, alone and must keep your wits about you. Getting all emotional and unhinged will not help. You need that “calm place” to go, a way to distance and distract, that sense of off-kilter humor to keep you in a good mental place. At least that’s how I survive. So if the next time you’re in the ER and you hear someone shout “Bingo!” and giggle from the cubicle next to you, poke a head in and see if it’s me and say “hello.”

Thinkstock photo via ddea.