I’m only being honest and don’t want to offend anyone who works in the ER, as you know I worked in the ER for years, but they rarely know about my disease.

It’s always a lot of phone calls back & forth to my specialists before we get to an actual plan of action. A lot of work on their part & let’s face it not every ER doctor is empathetic enough to do the foot work. Some know more than you, even if they’ve never had a patient with your illness. It’s stressful for me and the ER staff. I’m adamant from the moment I get there, that they contact my doctor or review my chart before doing anything.

My worst ER experience was one night when I woke up in excruciating abdominal pain. Have mercy, I tried so hard to deal with it. But it was bad, then I started vomiting, finally I ended up on the floor & called my husband who was about a mile away doggy sitting for our son.

I waited to long and by the time I got to the ER, I was out of tolerance for the pain. I needed something for pain! If you’re an ER employee know this, we know when you think we are crazy, drug seeking, over dramatic, & it makes you look ridiculous. Because we know from experience that once you learn about our disease & history you will want to help us quickly & compassionately.

On this particular night, I was treated with rolling eyes, disregard, disbelief, & downright disgust. They absolutely thought I was an addict looking for drugs. Whatever, I’m used to it. Who gives a 🤬!

What I do care about is the fact that their assumptions delay my care. I’m in agony, & I have to wait until I convince them I’m not an addict before I get treatment.

Do not spend your precious energy worrying about how others view your medical condition. ~Toni Bernhard

Finally I’m done. I look the doctor straight in the eye and tell him to go read my chart or contact one of my doctors, before he steps foot back in my room. I made it very clear to everyone in that ER, how they made me feel & how much worse they made this entire nightmare.

After my crazy came out, the doctor was honest and admitted he didn’t know a lot about Sclero & he took the initiative to contact my pcp. It wasn’t 15 mins later & the nurse was in there hooking up my IV, apologizing & really moving things along. Hallelujah I swear I could hear the angels sing.

Look being chronically ill sucks & some days this is the raw, reality of who I am. I know I am the image of an active addict, malnourished, begging for anything to stop the pain, I’m disheveled, and frankly a hot friggin mess. But my pain is real, my disease is a bitch and my body is a torture chamber. Help me.

It’s a small hospital. They have no clue, when it comes to Sclero. After many tests, drugs & humiliating vomiting & commode episodes, they tell me it’s colitis. They held off on antibiotics. The Dr sent all my tests off to my pcp so she could forward them to my Sclero team.

I went in for a follow up appointment with my gastroenterologist. She reviewed the results from tests taken at ER. She explains that it looks like the Sclero is thickening the walls of my intestines & I have a portion of lg intestine twisting. She dx me with SIBO, (Small intestinal bacterial overgrowth). It can be very serious & you need to seek immediate treatment if you’re having severe abdominal pain. Next stop colonoscopy & antibiotics.

Praise God I advocated for myself and the doctor contacted my doctors. If I hadn’t, I doubt they would have done the CT scan. Now mind you they still missed the disease process in my intestines & the twist. But let me just say, the fact they called my doctors, admitted they didn’t know much about Sclero & they apologized to me is huge. The lesson here is ADVOCATE for what you need. The ER staff really is full of caring & compassionate people who want to help. Sometimes they just need a kick in the butt to see you for who you are.


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