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Wednesday, May 16, 2018

Invisible Emergencies Series, Part One - The Personal Story Perspective

I have been sent a lot of different stories by people with invisible/chronic illnesses and Gastroparesis. I wanted to share all of these stories with you because I am not the only one who has problems going to the Emergency Room. I am not the only one who fears going to the Emergency Room. I am terrified of going, scared how I will be treated which you should NOT have to worry about when you feel sick enough that the Emergency Room becomes an option. However, I'll share some of my Emergency Room experiences as well.

I won't go now unless my husband forces me to. I had a really bad fall, almost two weeks ago now, where I ripped my battery of my Spinal Cord Stimulator, which I have done before. Instead of the battery lying flat, it's protruding out at about a 45 degree angle. In January, I went to the ER because my husband watched me do a backflip off of my bed, when I was asleep, and hit my head really hard on the nightstand. I blacked out and do not remember anything. He took me to the Emergency Room, where he said I was slurring my words trying to tell the doctor what happened. He said the doctor was about to write me off as a drug seeker until my husband told him what happened. They did a cat scan, and they probably should have help me for observation that night because I didn't remember ANY of this, but they sent me home with a medication for headaches. What if I had had a sub-dermal hematoma or something that was caused later that night? I am always treated as a drug seeker.

Then, I went to the Emergency Room last year because I was vomiting up blood. I could not stop vomiting to keep my pills down to get a grasp on it. I was dehydrated in a bad way. The Emergency Room doctor treated me like I was only there for drugs, despite me vomiting while he was in the room, and despite me vomiting up blood. He would not even look into it because he had already written me off as a drug addict and a drug seeker. I think I received one bag of fluid and was sent home. I wanted to tell him - you TRY projectile vomiting all day, pulling muscles, aggravating your esophagus enough to make it bleed, and see if you don't hurt.

It really bothers me that doctors in the Emergency Room do not treat us as people, even though we have true emergencies like dehydration. That can lead to organ failure. I know that they do encounter a lot of drug addicts and I understand, but if you have a patient in front of you who is actively vomiting blood, that is an emergency that is not fake. That is something that should be taken seriously. Trust me, if I could have waited for my regular doctor, I would have, but he probably would have sent me to the Emergency Room, too.


This is a wonderful article by Caitlyn Kalustian from The Mighty that describes why people with invisible/chronic illnesses fear the Emergency Room:

"Why People With Invisible Illnesses Fear the Emergency Room

As unpredictable as my illnesses can be, there is one pattern I consistently follow. It repeats about every three months.

The first thing I notice is a sharp uptick in my pain levels. My joints hurt more. I ache to my very core. My neck has sharp, shooting pains. The fibromyalgia flare is here. The fibro kicks the Ehlers-Danlos syndrome pain into high gear.

Then there’s that little tingle. It starts at the top of my jaw and creeps its way down my left cheekbone. I know I’m in trouble then.

Soon the hemiplegic migraine hits. As someone with classic, chronic and hemiplegic migraines, along with migraine with aura, I have experienced all that a migraine can throw at me. By far, the hemiplegic ones are the worst. I get the 'stroke' face, where my left eye and smile droop. I start to lose control over my muscles and have weakness in my limbs. I can’t think for the life of me, I can’t concentrate and I can’t form coherent sentences or spell or speak.

Once the hemiplegic migraine beast rears its head, there’s no turning back. If I’m lucky, I’ll wake up tomorrow and it will be gone. Usually, I’m not lucky, though.

Every three months (or sometimes only one or two), I end up with a hemiplegic migraine that goes on for days and days. I’m stuck in the dark (both literally and metaphorically). Sounds and light are overwhelming. Out comes the walker, which I usually stubbornly refuse to use until I absolutely have to.

By day three, I’m headed to the ER. Of course, the migraine doesn’t break with their cocktail, so they admit me. I spend the next two to four days in the hospital, waiting for my migraine to break.

It happens every three months like clockwork. Within my circle, we call it the trifecta. It’s always a combination of Botox wearing off, hormones and one other variable. This time it’s the weather. All of the storms have sent me spiraling.

Sooner or later, my stomach will stop digesting food. It’s not like I’m hungry right now, but food can be important to living (or something like that). Today I haven’t even managed to finish a protein shake.

As my pain gets higher, my dysautonomia kicks in. I can’t regulate my temperature, my blood pressure or my heart rate. My breathing becomes labored, and my heart rate skyrockets as they try and regulate my pain.

Sometimes I don’t wait the 72 hours. Sometimes I can’t.

If you are someone with chronic illness or a rare disease, you know how difficult the hospital can be. The emergency room can treat you like a drug seeker. They can minimize your pain and may even call for a psych evaluation.

I’ve been in the ER so often over the last two and a half years that I’ve gotten to know some of the staff and most of the doctors.

I’m lucky I have doctors who treat my migraines seriously. I’m lucky I have a team of university doctors who swoop in over the local hospital staff and call rank. I always receive excellent medical care, and so I’ve never had a problem going to the ER when I’m like this. I usually hold out as long as I can. Last time I made it two and a half weeks. This time I don’t know if I will make it through tonight.

I’m hoping I wake up better tomorrow. I’m hoping that this isn’t the start of another down season. But I do have that trifecta going on, so the odds are not in my favor.

No one likes having to go the emergency room, especially spoonies. But when the time comes, and it’s different for all of us, I go. I go because I know I will feel better afterward. I go because I can’t deal with the pain anymore.

So many spoonies fear the emergency room because they’re afraid of how they will be treated, so they choose to stay at home — sometimes in agonizing pain. Maybe they’ve already tried going to their local ER several times and always had bad experiences. For those of you out there that this applies to — I’m sorry.

Just because we have invisible illnesses doesn’t make us fakers, liars, drug seekers or psych cases. I see you, my fellow spoonies, and I see that your pain is real. I see that your illness is real. I see that you have searched for help and are being turned away at every door you knock on.

It seems to me that the medical community is lacking in their knowledge of rare and invisible diseases. They seem to lack bedside manner for the chronically ill. ER docs are quick and dirty. Get them in and get them out. They want horses, but we’re zebra unicorns. They don’t want to hear about our medical history or what’s going on. They want to know what hurts, how long it’s been hurting and “What brings you in today?”

Zebra unicorns aren’t that simple. They don’t want to spend the time to get to know our histories and us. They just want to fix us and send us on our way.

But what if we aren’t a quick fix? What if it’s not a cast on a broken arm or an emergency appendectomy?

The best advice I have for you is to be your own advocate. If someone is treating you unfairly in the hospital, ask to speak to the charge nurse or the patient advocate. Demand quality medical care. Everyone has a right to it, and if you’re having issues with the staff, there are specific people at the hospital just to help resolve conflicts.

The best thing that has happened to me is centralized care — all of my records are in one place. Before I got into centralized care, I was lugging around all of my medical information with me. By this point, I retain it all in my brain and can repeat it back like a worn-out cassette. With centralized care, though, all of your records are in one chart where all of the doctors at that facility can look at them.

I know the struggle. I know how hard it is. I know that we never, ever want to go to the emergency room.

But sometimes we have to, and we should be treated with dignity and respect when we do. I like to take someone with me who can advocate for me, like my partner or my mom.

Each of us has different thresholds for what we can tolerate and what sends us over the edge. But fear keeps us from getting the necessary medical care we need when we are over the edge. With so many bad experiences out there, how could we not be afraid?

So to you, my fellow warriors, I say this: Be your own advocate. Respectfully ensure that your rights are not infringed upon. Try to stay calm because getting emotional only makes it worse.

And to the medical community, I say this: Nine times out of 10 it is a horse. But there are those of us, the one in 10, that float through the clouds as zebra unicorns. Broaden the lens that you look at your patients with and don’t dismiss the chronically ill’s attempts to see help. It took a lot of courage for that spoonie to go to the hospital today. It wasn’t their first choice. They waited it out as long as they could, took every medication in their arsenal and are now here, in your emergency room, because nothing has helped. See us for who we are — striped, colorful and beautiful."


Another person put down everything I was feeling. I believe it was a family member since it was posted under her account.

For more information, please visit our Grief Group For GP Warriors.

"My good friend Kerri passed away day before yesterday. She was only 40 years old. She used study Human Development and Family Studies at Colorado State University, with degrees for the Deaf and Blind to help them. I feel like I've lost too many friends over the year."

This is going to be long but a mutual friend wrote this and I thought it summed up how I feel:

"She didn't have to die yet, the state of medical care in this country killed her. Kerri and I originally met on a service dog forum many years ago. She was an amazingly talented person as well as selfless and with a childlike innocence and sincerity. She trained her own seeing eye dog! Those in the SD community understand how difficult and special that is. When she needed more mobility assistance she was unable to get another guide from an organization.

Kerri's medical care was complex due to the multiple disorders she had and especially by her blindness. She was dependent upon a form of IV nutrition called tpn to live and many IV medications. Being blind obviously complicated this and she relied on a home health nurse to come daily and set things up for her to be able to use safely and continue to live independently. She struggled with frequent hospitalizations due to life threatening infections. At her last one it was determined she was no longer able to live at home alone. She would need to find a skilled nursing home to be discharged from the hospital. That discharge never happened, after being turned away from 51 different skilled nursing homes. They refused to take her in due to her tpn requirements. Insurance didn't allow for any further assistance in her home than she was already receiving. Kerri had many friends both online and in her assisted living apartment complex. She continued to work from home for jamberry until not too long ago. In her younger years she was a competitive ice skater despite the blindness. Had also recently been correctly dx with conditions that explained symptoms and complications she'd experienced for MANY years and started treatment. (it takes way too long to receive correct dx). Now we will never know how much function she could have gained back. Especially improvement of the immune system to prevent the frequent life threatening infections.

Due to the inability to find medical care in the form of a safe place to live, she made the only choice she had which was to die. It didn't have to be this way. She decided upon the next infection she would not treat it. That was taking too long, and she began to discontinue treatments that sustain life such as the tpn and iv hydration (she was completely unable to use her gastrointestinal tract.) She has now passed on.

We need to improve the medical options available for complex patients. We need to improve insurance so people can receive the care they need. We need to stop the incentives for Dr's to refuse care (for fear of litigation and punishment from the government. Today in medicine it's safer for Dr's to walk away from complex patients than open themselves up to the risk, something I've experienced myself as well.) We need to incentivise medical professionals to provide the best treatment they're able.

We need to improve. We need to change. We need to save the Kerri's of the world, allow them to live as long as possible to contribute to the world. No one should die simply because people weren't willing to TRY. She didn't die because her condition got worse. Not because there were no treatments available. She didn't die waiting for a medical breakthrough. (though one that could have cured some of her conditions instead of maintaining them is a future goal!) She died simply because no one was willing to provide what she needed and was available. She had so much more to give the world. She is survived by family- including her amazing Labrador guide and mobility assistance service dog Sophie as well as her daschund Mandy."

This was a needless death. It makes me angry I lost one of my good friends because she kept getting refused medical care."

I also was sent this video on Facebook and it had me in tears. I know that the VA medical center also treats the people who have fought for our country very poorly, but that does not even begin to sum it up. This video broke my heart:

I have had so many stories told and shared with me about people who have gone to the Emergency Room with an invisible/chronic illness. They are usually treated like drug addicts, are not taken seriously, and they have to bring someone with them to fight for medical care because they are too sick to fight with the doctors and nurses themselves. No one should have to fight with doctors and nurses. I know that Emergency Rooms are there for triage, and to handle really serious cases. I would like to point out that dehydration IS a serious case.

According to the Mayo Clinic,

"Dehydration occurs when you use or lose more fluid than you take in, and your body doesn't have enough water and other fluids to carry out its normal functions. If you don't replace lost fluids, you will get dehydrated.

Anyone may become dehydrated, but the condition is especially dangerous for young children and older adults.

The most common cause of dehydration in young children is severe diarrhea and vomiting. Older adults naturally have a lower volume of water in their bodies, and may have conditions or take medications that increase the risk of dehydration.

This means that even minor illnesses, such as infections affecting the lungs or bladder, can result in dehydration in older adults.

Dehydration also can occur in any age group if you don't drink enough water during hot weather — especially if you are exercising vigorously.

You can usually reverse mild to moderate dehydration by drinking more fluids, but severe dehydration needs immediate medical treatment.

...Anyone can become dehydrated, but certain people are at greater risk:

People with chronic illnesses. Having uncontrolled or untreated diabetes puts you at high risk of dehydration. Kidney disease also increases your risk, as do medications that increase urination. Even having a cold or sore throat makes you more susceptible to dehydration because you're less likely to feel like eating or drinking when you're sick.


Dehydration can lead to serious complications, including:

Heat injury. If you don't drink enough fluids when you're exercising vigorously and perspiring heavily, you may end up with a heat injury, ranging in severity from mild heat cramps to heat exhaustion or potentially life-threatening heatstroke.
Urinary and kidney problems. Prolonged or repeated bouts of dehydration can cause urinary tract infections, kidney stones and even kidney failure.

Seizures. Electrolytes — such as potassium and sodium — help carry electrical signals from cell to cell. If your electrolytes are out of balance, the normal electrical messages can become mixed up, which can lead to involuntary muscle contractions and sometimes to a loss of consciousness.

Low blood volume shock (hypovolemic shock). This is one of the most serious, and sometimes life-threatening, complications of dehydration. It occurs when low blood volume causes a drop in blood pressure and a drop in the amount of oxygen in your body.


People may need to take in more fluids if they are experiencing conditions such as:

Vomiting or diarrhea. If your child is vomiting or has diarrhea, start giving extra water or an oral rehydration solution at the first signs of illness. Don't wait until dehydration occurs.

Strenuous exercise. In general, it's best to start hydrating the day before strenuous exercise. Producing lots of clear, dilute urine is a good indication that you're well-hydrated. During the activity, replenish fluids at regular intervals and continue drinking water or other fluids after you're finished.

Hot or cold weather. You need to drink additional water in hot or humid weather to help lower your body temperature and to replace what you lose through sweating. You may also need extra water in cold weather to combat moisture loss from dry air, particularly at higher altitudes.

Illness. Older adults most commonly become dehydrated during minor illnesses — such as influenza, bronchitis or bladder infections. Make sure to drink extra fluids when you're not feeling well."


If you have a story you would like to share or tell, and I can change the names if you want me to to protect your privacy, please email me at emilysstomach[at] I would like to continue this series for people who have an invisible illness, because we're just losing too many people.

Source: Made by my friend, Melissa M.

Here are some more articles that might help: