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Fluorescent Lights

Fluorescent Lights in the hall... visible through the window of the room I'm in. ..Emergency Room... Can't... ...breathe. And I'm alone, except for the staff.

All the things I deal with, all the conditions...

I still try to show up for other people... I think... ...

I am not as supported in this life as I thought I was.

This hurts... and it feels like a long, winding dirt road that I could get lost on forever.... but maybe the first step is the hardest?

Have I been so blind... for so long?

Am I enough? To be respected? Loved? What about... cherished?

All I wanted was to be visited, and without expectation. #ER #Asthma #BipolarDisorder #ComplexPosttraumaticStressDisorder #ObsessiveCompulsiveDisorder #RareDisease #BrainAbnormality #GriefWork #SleepDisorders #ThyroidDisease

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A Sleepover At The ER: Navigating a Rare Blood Condition

“Is it possible that it is just… nothing?”

Raising my voice over the beeps of the Alaris medical pump, clutching a folded medical gown with tigers on it, and staring at seven doctors with their traveling computers should have been my sign that this was not “nothing.”

“No. This is definitely something,” the doctor states. He turns to the panel of residents filling the hallway. “We have here a seven-year-old presenting with head hematomas that needs attention. How do you handle sending in a patient who needs surgical intervention when you aren’t sure if their blood can clot?” He pauses for their response. “It’s tricky, isn’t it?”

He turns his attention back towards us. “This is a teaching hospital. Yours is a good case to learn on.”

Twelve days ago, I tucked my son into bed surrounded by his five favorite stuffed animals, his Bobos. He casually mentioned, “Momma, I bunked my head on the monkey bars during recess but I’m okay.” It wasn’t significant enough of an event to warrant telling the recess monitors, visiting the nurse, or even using an ice pack. I kissed his forehead and snuggled him in tightly into bed, carefully laying each Bobo around his neck, as he likes. Just days later, it would become the same routine I would continue at the children’s hospital for the next ten days.

Quietly, this unremarkable bump began a stealthy descent into concerning bumps on both sides of our child’s forehead and the top of his skull.

These hematomas, or as Oliver called them, the mushy part of his head that felt now like Squishmellows, grew to an alarming size. So alarming that the pediatrician's office immediately sent us to the emergency room, which lead us to our new room on the Hematology/Oncology floor.

“It appears as if we are looking at something rare,” the doctor continues explaining to the team. He describes how Oliver’s initial diagnosis of ITP at age two appears inaccurate or perhaps incomplete. This diagnosis occurred after a terrifying investigation when he presented with a petechiae rash. It was determined that Oliver’s body produced fewer platelets and would require supervision as he grew older. It was no big deal. An occasional nosebleed here, a visit to get blood drawn there; the diagnosis while unsettling was in no way impeding the life of a healthy, active seven-year-old. However, this time, it seemed like the monkey bars unearthed something more nefarious hiding in his system. The doctor translated: It is like the platelets are the pieces that build up at the dam to prevent the water from flowing. We initially thought he just didn’t have enough pieces, but now it appears that the ones he has aren’t really working. Like they are on strike…

“So, what do we do?” my husband asks while I attempt to draw a picture of water flowing into a dam in my notebook.

“We give him what his body is missing with infusions, hope his procedure goes well, and then wait for these hematomas to go away. Something is happening with his blood to cause this reaction, but we do not know what it is yet. This is a highly unusual case, so we will take it day by day.”

The Moores know rare, but we are not comfortable with it. One might think that with each experience of navigating the unknown, we would form calluses to help us get through the next event. But the previous resistance we have built does not transfer into the new situations. We return to our contact list to update new doctors, we explain new medical terminology to our family, and we help our children (who have never been great at transitioning) begin to transition into the next unknown.

Although, this time it is different. This time we have learned how to ask for help and accept it. This time, we have opened our doors (and broken refrigerator) to our loving and supportive community who continually show up in ways that we didn't even know we needed. We receive daily jokes and riddles to keep humoring our little trooper.

And we don’t know what is coming ahead. We don’t know when he will spend a day without being hooked up to an IV or when he will return to school. We don’t know when he can take off his compression bandages or his Spiderman helmet designed to make those sneaky hematomas go away. We don’t know what is causing this or what it will look like in the months ahead. But we do know how lucky we are to be surrounded by an incredibly strong community.

Not for just this rare adventure, but for every single one we have been through as a family.

And at the end of every long day, after hours of infusions of donated platelets and plasma, we snuggle with our little boy in bed. We reposition his bandages, kiss him right on his squishy forehead, and make sure he peacefully sleeps (with his newly bandaged Bobo to watch over him)

- until we can figure out what this “nothing” really is.

#platlet s #Clotting #ER


Fibro symptoms with Covid

Question...has anyone experienced extremely heightened fibro symptoms due to #COVID ?
Went to #ER on Christmas Day evening with stroke like symptoms. Facial numbness and tingling. Slurred speech, dizziness, tremors, twitching.
Transferred to hospital by ambulance, lots of tests...most everything came back ok. (Thankfully, or not because of course its all in my head, right) My heart was slightly enlarged.
Kept overnight for observation, neuro on call said he has seen Covid do this to people with nerve conditions. Whatever that means.
I'm a public school teacher and have all the vax, and boosters- this was my fourth case of Covid each time it puts me flat on my back for a week or more with strange symptoms but this was the worst and scariest by far.


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A life update #CheckInWithMe

I wanted to let y’all know why I’ve been so inconsistent with posting
I went to the ER two days ago at 4am cause my pain had been at an 8/10 for 48 hours at that point
All they could do for me was give me a drug induced nap not take away any of the pain so I’m back home again in the same pain
So that's ✨fun✨

#Headache #Migrane #IIH #iihmemes #IdiopathicIntracranialHypertension #Memes #ChronicPain #ChronicIllness #Pain #ER #Doctors

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In the ER pain flare being condescended to and ignored # pain #ER #condescending nurse #Ignored in the ER

Help me please with real pain in effective ways


Anxiety has evolved!

Last night I was at A&E. I had been having palpitations and was breathless. I was there for 7-8 hours and in that time had blood tests, another ECG and a chest x-ray, all of which came back fine.

So now I just have to accept it is anxiety. And that the attacks are every day and unpredictable. And I don’t even have to be anxious to get them. Fun times.

I slept all day when I got back. I was absolutely exhausted. Didn’t work for that reason.

#Anxiety #palpitations #breathlessness #AnxietyAttack #AnxietyAttacks #ER #EmergencyRoom #BloodTests


The waiting is the hardest part #BorderlinePersonalityDisorder #ER #behavioralhospital #hospitalbound

How is it that the person I fear the most is myself. I'm currently on the sixth hour waiting in the ER waiting to get sent to a behavioral facility. I am not going because I'm afraid I am going to commit suicide. I am going because I am afraid of what I will do to myself during this ongoing three day binge of self harm, self loathing, and anger. For once I am not feeling this way because of something I've done. I don't know what hurts worse, being hurt purposely, or hurting myself. At least I know for the next three days I should be safe.


#ER #EReducation #ERdoctors

Went to the emergency room today. I’ve had pneumonia for almost a month. So I’m treated as a covid patient because they have similar symptoms...fine I’ll comply, it’s safer for me anyways. However when you have someone who is considered in the medical profession to be “ medically fragile “ don’t send in the dinosaur doctor who has no idea you have any kind of serious medical conditions and who cuts you off in the middle of you talking because I was trying to catch my breath....I’m never sent home from the ER so I packed a bag ready to stay because of how sick I am...then he comes in “ it’s your lucky day! Your blood work is fine you get to go home” glad as I am that my blood work came out normal this time ( 10th time in the hospital this year ) I’m so so sick and I would have appreciated a doctor who understands medically complex patients and who would have been a little more concerned with how sick I am....ugh this is why I hate going to the emergency room! Even when your lips are purple, your face is bright red, your coughing so hard it hurts your chest and lung and you’re pretty much in tears you’re so uncomfortable as long as your bloodwork is good you’re all clear 🤦🏻‍♀️

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ER Trip

Spent 6 hours in the ER last night/this am with a high heart rate and dizziness. All they came up with was a high white blood cell count which they wouldn't treat so all they did was give some fluids. I'm still dizzy and feel horrible today and now I'm super frustrated. #EmergencyRoom #ER #Undiagnosed


Being the ER companion to someone with SI

A little over a week ago I drove my boyfriend to the ER at midnight because he was having suicidal ideations. The whole time I was quiet and calm and I smiled at the nurses and said thank you. I held his hand and comforted him and made bad jokes. I was calm and peaceful because he needed me to be. I sat there all night while he slept. By 3pm the next day we were in my home (we don’t live together) so I could monitor him, and he was asleep again. I however, was exhausted and sleep deprived and my anxiety was ramping up. He was asleep and safe and had a treatment plan. And just like that I didn’t need to be calm for him so I was not. By that night I was so anxious that I spent nearly two hours getting in and out of bed fighting off anxiety attacks. I was panicking about his safety and he was right there next to me, asleep. He is in PHP now and doing much better. Yet, when I don’t hear from him for awhile - my mind goes straight back to the way I felt when he told the nurses he had a plan. In seconds, I’m hearing it all again, but now I don’t have the adrenaline of being leaned on — so I just disintegrate. It feels so selfish to react like that when he is the one who needed help. I did not go through the trauma, he did. And he is fine so I should be too,right? Not to mention I have no idea how to support him besides smiling and listening.
Anyone with similar experiences please chime in. #si #SignificantOther #SuicidalThoughts #Support #ER #Relationships #Trauma #AnxietyAttack #Anxiety