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Trust in the Power of Plain and Small Things#Hospitals #cancer#Caregivers

Working for years among sick children and those who care for them has taught me that keeping it simple matters. This is especially key for families whose child has received a cancer diagnosis. Their lives have already become complicated, and safe, familiar routines help smooth the path ahead.

Families with a hospitalized child must give away much of their power. Like or not, they have to let go of the self that can supervise things, organize things, and control things. Even things as simple as walking a child to the school bus or managing personal privacy feel out of reach.

Most of us experience hospitals as places where complicated, even heroic acts happen, especially in hospitals that care exclusively for children. In spite of remarkable advances, I’m often heartened by how the extraordinary breaks into ordinary daily events. Feeding, bathing, housekeeping, teaching, consoling, and encouraging – these are the points of care that tend to take on special meaning for families who have been unceremoniously dropped into the medical world.

Far more than predictable acts of care, these plain and simple tasks—in a hospital or at home— become powerful signs of continuity. Basic routines performed with kindness generate a rhythmic, life-sustaining order that truly can be trusted.

Name some daily tasks that routinely give you a sense of calm and order.


I had unexpected #HeartSurgery !! (But I'm perfectly fine now)

There's the link to my shortened story and some pictures #TriggerWarnings if you don't like #bruises , #SurgicalSites that are covered, or hearing about #Hospitals , #Surgery , or anything related to those.



I’m feeling extremely anxious over a decision I need to make about upcoming heart surgery. I have lost all confidence in the dr who’s planning on doing the surgery and a present I’m getting a second opinion from the VA. I have a pacemaker and the dr wants to do a procedure called AV Nodal Ablation they zap the devise in your heart that controls your heartbeat with radiation and heat to kill it and my pacemaker will have to control my heartbeat for the rest of my life.That’s the part I don’t like the dr who wants to do the Ablation is said to have the same problem with his heart as I do. This is the kicker a nurse who I believe worked for my dr a one time came into my room when I was recovering from the pacemaker installation and stated to me to be extremely cautious of the dr. She stated to me he has a hidden agenda in that he uses his patience to try and find a cure for his on problem.I presume now you can see why I’m a little anxious over his diagnosis. I’m so filled with anxiety I got baptized before I would even think of having the surgery that’s how much confidence I have in this dr now.If you believe in the power of prayer please say a prayer for me . #Hospitals #Emergency #Worried



So I tried to unscrew a lightbulb on Sunday and it broke in my hand. Went to a&e and they tried everything but couldn’t get one bit of glass out. Have an appointment in the morning to see plastics dept. to get it out (they didn’t say how but I feel it’s gonna suck). Finally got to sleep on two tramadol only for my (lovely, now feeling guilty) partner to roll onto my hand in his sleep. Now wide awake and in pain but can’t take another for hours. I am not in a good mood. #EhlersDanlosSyndrome #Anxiety #Hospitals #Glass #Injury #hands #Pain #HypermobileTypeEDS #HEDS #tramadol #PainKillers #Sleep #Insomnia #PlasticSurgery


Emotional trauma from psych hospitalizations #Hospitals #eatingdisordertreatment

I had 2 very bad ip stays for my ed last year. Bad as in negligence, scared to seek medical or psychiatric care since then, afraid to put trust in any doctor, nurse, etc. Also adding in that these were locked units and that so much control was surrendered, I’m now petrified of loss of control.

I entered a residential level of care yesterday and left today. It was the same organization that inpatient, just a (slightly) lower level of care. It wound up just reminding me of the ip admits. There were very few perks that weren’t available outside of ip, besides being able to vape. It was still highly regulated, strict, everything taken away, which I wasn’t prepared for and kicked in reminders of last year, when I couldn’t breathe without asking.

(it was bad last year. I still cry talking about it.)

After being anxious all night and morning, I ended up having an anxiety attack early afternoon. I’d already been told by the nurse that it would be a hassle to get a PRN med for anxiety. I wasn’t allowed to smoke to chill out, I couldn’t access any of my contacts to talk to my support system. I was just told to wait (about 1-2 hours) to get those things, not helpful during an anxiety attack.

I decided that, in addition to my previous negative experience with them, and if this is how they’re going to treat a panic attack on my first full day, no thanks.

What to do now I’m still figuring out, but I don’t have to figure it out tonight.


What it’s like in a mental hospital #mentalhospital #PsychiatricHospitals #Hospitals #MentalIllness #MentalHealth #MajorDepressiveDisorder #GeneralizedAnxietyDisorder #BorderlinePersonalityDisorder

Quick reminder that everyone’s experiences are going to be different so if you go to a hospital, your story will be different than mine!

I’ve talked about what it’s like going to the ER for psychiatric evaluations and now I’d like to discuss what it’s actually like once you’re in the psychiatric hospital.

Typically the first thing they do is check your belongings and take any contraband which can include: medications/vitamins, electronics, strings/belts/shoelaces, and anything sharp like paper clips, blades or glass. The show you to your room and you get settled in.

Meals generally go: breakfast at 8, lunch at 12, dinner at 5 and there’s usually snacks available in the kitchen area for any time of day.

Meds are in the morning and at night for most people but some had meds throughout the day as well.

Vitals were first thing in the morning.

The psychiatrist and their team which could have simply been a nurse or a whole group of people including nurses, therapists, medical doctors, medical students, and patient care coordinators would meet with each patient individually in the mornings Monday-Friday. The only time you’d see the team on the weekend would be if you were admitted during the weekend or Friday afternoon. This meeting is where meds and general treatment plans were discussed such as discharge dates and any progress or lack of progress being made.

Groups were run by either group therapists or mental health workers. Some were CBT based others were DBT based, it depended on the hospital. There were anywhere from 2 groups a day to I’d say 5 or 6 a day with weekends being pretty quiet and just hang out time.

One place I went had a computer but no Facebook was allowed.

Phones and tv were allowed any time that groups weren’t happening or during quiet time which was 11 pm - about 7 am. Some places had time limits on the phones other places didn’t.

There were board and card games as well as arts and crafts.

Different hospitals have different level systems and those levels determine privileges like going off the unit with the group, going out with family/friends, or being allowed to have shoes.

Nurses would check in with each patient each shift.

Checks were every 15 minutes meaning a staff member had to visually observe you unless you were in the bathroom in which case they would knock and you’d say your name.

At my last hospitalization they had made a new rule where each shift change the nurse would come in and do a room check to make sure nobody had secured any contraband.

You have to ask for pretty much everything including deodorant and soap.

The units I have been on were pretty tame. There were a few meltdowns but nothing major like some other places I’ve heard of.

Visiting hours varied depending on the hospital. Generally the visiting hours were longer on weekends.

I’m sure I’m missing something so if you have any questions about what I’ve written or want to know more about something just comment your question.


A hospital fairytale #ChronicIllness #poems #Hospitals

Clock strikes midnight
Ballroom music dissipates
The steady beep of the heart monitor
The only rhythm to dance to
Princes gentle touch
A distant memory from the sharp needle stick
Buffett’s of cakes and wine replaced with
Feasts if stale saltine crackers
The blue dress of he dreams is gone
A hospital gown as a poor replacement
Glass shoes left behind
Traded for sanitary slippers
A hospital fairytale
#poems #ChronicIllness #Hospital #Isolation #Lonliness


Temporary happiness #Hospitals

So I've been to 3 different Hospitals 5 times and I like to call them "Temporary happiness" because I go there wanting to die and very unhappy and when i get there and get used to the place i feel somewhat safe and sorta happy. But then I leave and go back downhill, back to the same toxic friends, back to the same bad routines, back to the same thoughts.