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Gastroparesis flare

#EhlersDanlosSyndrome #Gastroparesis #Intestinal Dysmotility #ChronicPain
So the last 2-3 weeks I’ve been having a bad flare up. Extreme nausea, severe abdo pain, not even tolerating my normal coffee. Saw the gp on Monday who increased my Duloxetine and added back in domperidone to try to help the nausea. It has helped a tiny bit but I probably need admitting to hospital. I’m waiting on an nj tube currently. Problem is I’m a single mum and have nobody to have my kids. So hospital is a real last resort. Have had to take bowel prep this afternoon as I’ve not pooped in a week 🤦🏻‍♀️ I’m exhausted, my muscles have wasted badly. Don’t really know what the point of this post is. Just need to get it off my chest I guess 🙈


Feeling lucky

I have a handful of chronic Illness and I’m also a nurse. I recently went back to work part time after being out on medical leave for 10 months. It’s truly kicking my butt, but I’m so happy to be back. I got called bad ass and and inspiration, but In reality I just feel lucky. I’m one of the lucky ones who can still work, albeit part time but I’m working. I don’t feel deserving of being called these things. Yes, I have daily struggles but so doesn’t everyone.

#ChronicIllness #TPN #EhlersDanlosSyndrome #Intestinal Dysmotility #AutonomicNeuropathy #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Nurse

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My recovery is so slow, but now that I am feeling a little better I keep thinking I should be able to will myself better the rest of the way.
Or maybe I'm not really sick -- if I would just get up and get moving I'd be fine. Or if I just lost weight I'd be fine. That I'm a lazy sponge forcing my family to take care of me instead of taking care of myself & pulling my own weight Intellectually I know these thoughts are not true but emotionally I am losing this battle right now.

I've fought hyperparathyroidism for close ton5 years now - January 5, 2021 I had 3 of my 4 parathyroid glands removed because all 3 had tumors on them. Thankfully one only needs half of a gland for health. I have double that! (Thankfully all the tumors were benign.) Since surgery it has been a Hormone storm as my system rebalances.
There have been 3 out-of-State trips I needed to make, one of them by myself. The Fibromyalgia Monster that invaded my body flares after travel. The changing pressures & weather of Spring flares both the FibroMonster and migraines.
I am trying to keep up on my PT exercises to stave off spinal surgery because arthritis is narrowing nerve pathways -- yet can't manage all the exercises each day.
Yet I feel that if I am not exhausted, wrung out & at the end of my energy, I've just been lazy today.

Any ideas to help me change this "stinkin' thinkin'"?

#post surgery
#chronic Illness
#GERD #diverticulosis #IBS -D #Intestinal Dysmotility #Undifferentiated Eating Disorder
#Abuse Survivor
#Highly Sensitive Person
#RAISED in a low-grade Cult

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My Kids Have Some Encouragement And Advice As You All Begin A New Week

A few things my children would like you to remember today:

1) Listen to your body and rest if you need to.

2) Ask for what you need (in Rose’s case - while standing on your hooman slave)

3) Take time for self soothing; you deserve to treat yourself well 🥰

Here’s to a new week...Have a great one everyone!

#TheMighty #Intestinal Dysmotility #AnorexiaNervosa #Ostomy #Epilepsy #TemporalLobeEpilepsy #Dysautonomia #Hypoglycemia


Working with a chronic illness

I don’t know where to start really. I just recently found these forums and haven’t been able to find any about working and trying to handle a chronic illness. Anyone else attempting to juggle a full time job while trying to figure out their illnesses? I’m an emergency department nurse and I also have Ehlers-Dablos syndrome, POTS, and some sort of GI issue that’s causing chronic diarrhea, malabsorption, and an over 100lb weight loss. I’m finding it harder and harder to handle work. I’m also finding it harder and harder to mentally handle the fact that I’m 29 and having to use more and more sick days....
#ChronicIllness #EhlersDanlosSyndrome #LivingWithPOTS #Intestinal Dysmotility