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I'm in the hospital
Oncology floor developing pneumonia,no anc which nurse told my sister that's your immune system 101.2 fever 6.2 hemablogin getting blood transfusion. Need prayers. #Cancers #Hospital
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Took the first step to becoming the Bionic Man #MightyTogether
Day one in the Hospital for my knee replacement. The staff has been so kind. They say the surgery went well. Cat naps for the rest of the day, tomorrow the work starts.. #nurse #nursing #night #surgery #Hospital
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I had a meeting with my psychiatrist today for #medmanagement . She wants me off #Xanax . I’m being cut from 4mg-3mg/day. She’s also insisting I go into the #Hospital for #detox . I do NOT want to do the hospital. I WOULD like to be off xanax.
What have you experienced with Xanax withdrawal? Would a hospital really help me?
#Fibro #Fibromyalgia #Type2Diabetes #Diabetes #Diabetes #Deafness
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Time
Time is like anything. You need the right amount of it to be okay. Too much or too little and you lose yourself.
I'm in hospital at the moment, struggling with my mental health. The relativity of time is messing with me at the moment. I have too much time, so much time. So much time that I'm losing my mind. I need less time, more things to do.
I can't wait to leave now, I guess that means that it's time for me to go. Or at least, continue my journey on the outside. Unfortunately, I have one more week. #MentalHealth #Hospital
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Hospital Again
In the hospital again. This time I have pancreatitis! I need surgery they said because a bile duct is blocked off, but the surgery can't happen without an endoscopy. The endoscopy is scheduled for freaking September! They're trying so hard to rush it. If they don't I'm just gonna keep ending up here in the hospital. They admitted me this time. I was glad to have my hospital go bag made and ready this time.
The things wrapped around my legs are for blood flow so I don't get a clot. #AutonomicDysfunction #ChronicPancreatitis #Hospital
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How do you pace your energy levels throughout the day?
Symptom management when you live with a chronic health condition can be challenging, especially when you only have so much energy to work with on any given day. It can sometimes feel like a guessing game of how much you can get done, right?
What is the most effective way you’ve found to measure how much energy you have to complete your daily tasks? How do you delineate your responsibilities if needed or slow down the pace?
#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe
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#Hospital #foodbolusprohibited
How’s everyone’s memorial day going? Sorry for the rant but I am so irritated right now. I am in the hospital with a kidney infection and they will not give me a carb bolus before I eat. When I tried to explain to the doctor what that was, she was like ‘I don’t understand.’ She said ‘This is just our policy.’ Basically, They want ppl to have a post meal spike and treat the spike afterwards. All I’ve been eating is the proteins and of course my BG have still been running high. I’m understandably furious 🤬
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How do you ride the roller coaster of fluctuating health conditions?
Living with one health condition or two... or five… can feel like a roller coaster ride sometimes, especially when symptoms overlap or egg each other on. Depending on the time of year, and whether or not you have a diagnosis that goes in and out of flares/remission, no day is ever the same.
How do you ride the roller coaster ride with your health? Any tips or wisdom to share?
📕 Check out today’s Mighty read on the subject by EmeraldMaz
Riding the Roller Coaster of Fluctuating Disability
#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe
Riding the Roller Coaster of Fluctuating Disability
How many of you have been asked something like, "I thought you were getting better?"
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What’s a "hidden cost" of having your specific health conditions?
When you live with a disability or chronic illness — on top regular everyday living expenses — there may also be additional item or resources that are needed, especially for accessibility, support, or comfort purposes.
What are some of your "hidden costs"?
✨ Need a Mighty story to read? Check out jayquelyn7's related article here:
Tuition. Housing. Books. And on top of that….a Disability?
#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Hospital #Cancer #Anxiety #PTSD #CheckInWithMe
Tuition. Housing. Books. And on top of that….a Disability?
"You would not believe the total debt students with disabilities have in one year."
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What tips do you have for seeking emergency care with a chronic health condition?
Last week I went to three different emergency rooms in the span of three days. I was facing the dreaded status migrainosus with the added bonus of severe nausea and everything else that goes into a protracted migraine attack. I was in the worst pain I think I’ve ever experienced — which is saying a lot.
The ER visits ranged from somewhat helpful to actively harmful. So it goes when bringing a chronic condition to the emergency department, I suppose.
As a chronic illness and rare disease patient with a dash of mental illness on the side, I don’t choose to go to the ER lightly. As I’m sure many of you know all too well, it takes a lot to decide to seek emergency care when you live with a chronic illness or rare disease. We may have medical trauma, distrust in the health care system, or maybe even feel like we don’t deserve acute care when our chronic conditions throw us a curveball.
But, if and when the time comes to go to the emergency room, we have to be prepared. And who better to share advice about seeking emergency care than our community?
So, Mighties, what tips do you have for going to the ER/A&E with chronic illness and rare disease in tow?
P.S. Your answer may be used in an upcoming Rare Weekly newsletter!
#CheckInWithMe #ChronicIllness #ChronicPain #Disability #RareDisease #Migraine #Spoonie #Hospital #MentalHealth
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