gastroparesis chronicillness invisibleillness chronicpain spoonie fibromyalgia chronicpainwarrior dysautonomia autismspectrum multiplesclerosis pots spoonielife posturalorthostatictachycardiasyndrome chronicallyill chronicillnesswarrior egyption ehlersdanlossyndrome hewbrew insomnia loveandlight poeticjustice potsie spooniestrong alchemist amplifiedmusculoskeletalpainsyndrome ampsawareness butyoudontlooksick childhoodpain chronicfatigue ibdwarrior
That morning excitement not knowing what will happen to you during the day..random flare? Migraine? Infection? Abscess? Random pains? Throwing up? So many options
After 2 big setbacks this week would really love to get back to my boring quiet routine Who else wishes their body calmmmms down for the weekend? 〰️
Earth Day— a 24hr period when we are inundated with reminders to reduce waste and save the world.
In schools, when kids are taught to recycle, they often see images where those who recycle are depicted as superheroes, while those who don’t are left sad and defeated. Although I know my situation isn’t normal and it is completely out of my hands, today I feel like the little person defeated by Super-Recycling-Man.
This picture is just one day’s worth of medical waste. Multiply that by 314—the number of days I’ve been on TPN—and you get the amount of trash I am single handedly responsible for. No matter how necessary it is or how little control I have over the situation, it’s really hard not to feel guilty. I too love our planet, and I too feel for all the sad animals in advertisements to get people to recycle, but before trash shaming, please remember that us patients are doing the best we can with the situation we’ve been given ♻️
My newest creation: Keto Snickerdoodle FatBomb! This is good, y’all! Recipe:
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✔️1 can coconut milk - I like Native Forest Simple.
✔️1 dash of vanilla powder.
✔️2 TB collagen GELATIN powder (not collagen powder - you need collagen gelatin). I use @bulletproof CollaGelatin.
✔️Toasted coconut flakes UNSWEETENED. I like Let’s Do Organic brand.
✔️Coconut oil. I like @spectrumorganic .
✔️Snickerdoodle FatButter from @onnit (cashews, macadamia nuts, organic coconut butter and hemp seeds, erythritol, organic lucama, organic cinnamon, pink Himalayan sea salt, organic stevia leaf extract).
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Place unbleached parchment paper cupcake liners into a cupcake pan. I use @ifyoucare_usa brand.
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Put 1/2 bag (about 4-6 ounces) coconut flakes in a blender with as little coconut oil as needed to blend into a smooth paste. Pour just enough into cupcake molds to coat the bottom of the cupcake liner. Should divide into about 8 portions. Place into refrigerator for about an hour.
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Put about 1-2 TB of @onnit snickerdoodle fatbutter on top of the coconut crusts. Make sure fatbutter is at room temperature. Gently use your finger to spread it evenly over coconut crust. Refrigerator again for at least an hour or more.
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Put coconut milk, vanilla and collagen gelatin in a sauce pan and whisk vigorously. Then heat until bubbly. Gently pulse in blender until smooth.
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Pour coconut mixture over snickerdoodle fat butter. Refrigerate at least 6-8 hours until cold and solid.
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Enjoy!!!!
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⁉️Know someone who would enjoy #sugarfree #dairyfree #glutenfree #keto #fatbombs ⁉️ Be sure to tag them and let them know you can access my FREE FatBomb recipe eBook by clicking link in my bio! Enjoy 15 free recipes including recipes for salted caramel, coffee latte, lemon, mint chocolate, sunbutter, chocolate cookie, and pumpkin spice bombs. What will you try first?!
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Most of the recipes call for erythritol or xylitol but you can substitute stevia, honey, monk fruit or just leave the sweetener out.
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➡️ https://www.autoimmunefoodie.com/free-ebooks
Today is day 5 of #EDSAwarenessMonth and I wanted to talk about mobility aids. In my years I have used a variety of methodologies to get around; crutches, braces, a wheelchair, a walker, some pretty amazing robot legs, and my own two feet. Lately I have had to start using a cane (both for balance and for when the waves of pain hit.). So much for an “invisible illness, am I right? Sometimes I could not feel MORE visible ➡️I am not ashamed though! I will never be ashamed to have to use a mobility device. Before I had to use one, even I fell for the, “Confined to a Wheelchair” phenomenon. ➡️ I think most people, even some doctors, view mobility aids and devices as some sort of huge downgrade in quality of life. I get it, sometimes medical supplies aren’t SUPER glamorous, but what some really fail to consider is the FREEDOM that they can supply for those who truly need them. ➡️So I will continue to use my cane. I will continue to wear my braces. I will continue to answer questions, but I will continue to do my best to live my life to the fullest. ➡️ Tomorrow I begin an intensive outpatient physical and neuro therapy program here in PA. (Furthering my superhero training). Little apprehensive, it’s going to be a lot of work, but I’m most definitely excited. ➡️Bonus: Me “Zaching” against cancer on #zachingday
TW: weight/emetophobia/nutrition talk
So I no longer have an NJ tube. Which is terrifying. It blocked this week so we came in to get it fixed as usual and got told they would only do a surgical tube, so that's what we were expecting. And then on Thursday a new gastro took over my care and told me everything is in my head and they want me to just sustain myself orally
This isn't in my head. I know that for a fact. There's many tests that haven't been run, plus I have gastro diagnoses so this has come out of nowhere and we don't know what to do. I have no nutrition and hardly any hydration and we're not sure where we're going to go from here. Even just trying to keep drinking to stay hydrated is causing me to throw up. I'm still in hospital but might be discharging soon as I'm just sitting getting sicker and then we'll be looking for an EDS/GP specialist gastro BC I'm not due to see my gastro til July and we know I won't be in a decent state til then.
It's frustrating for this to be happening again. I have been told in the past that my pain and dislocations were in my head just for them to turn round months later and go 'huh, turns out it was real!' and whilst I have no doubt that'll happen again, I can't just sit and wait. My weight is only just above the line for being underweight and I'm dropping quickly.
Please can I ask you guys to pray. Pray for a plan, pray for the right doctors, pray for my nutrition to get figured out. I'm getting worse everyday and am genuinely suffering pretty massively right now. We need God to show us a path because at the moment things are so unclear.
Love you all
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Picture creds to @thechroniccommunity
DISCHARGE DATE • My neurologist came by this morning and I asked when I would be able to go home. He and the neurovascular doctors thought it would be helpful to do another MRA to see what’s happening in my brain and we’ll use those results to make the decision. This will show whether the new med is working or if we need to move forward with other testing or med combo. Nervous to find out either way.
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Essentially, there’s no way I’ll be going home this weekend so I will have been here for 5 weeks as of Monday.
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Super frustrated because I’m so ready to be in my own bed and have Candice next to me, not having to text all night. I’m going to try to see if I can go to the peaceful gardens that is on the hospital grounds just to get some fresh air. I haven’t been outside in 4 weeks 5 days and I think it would do my body and mind some good. ETA: forgot to say zoom in on the picture to see my “oh no, the lights!” face. ☺️
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I lost myself again
I’ve felt like this before
I’ve been tired of trying
I couldnt do it anymore
The world felt far too loud
All I heard is what I can’t do
I felt useless without a role
I didn’t know how to push through
I wasn’t moving forward
Instead I felt stuck in reverse
I couldn’t see what the point was
I felt like I was getting worse
I lost sight of all my goals
And struggled with my self care
I was fearful of all I did
Terrified of pain & another flare
It’s hard not to hate a body
That’s trying as hard as it can
Yet stops me doing what I want
Why won’t it stick to the plan
I’ve taken many a deep breath
And now I’m starting to see
Although my body stops me living
It will never stop me being me
#chronicillness #chronicpain #autoimmunedisease #chronicfatiguesyndrome #chronsdisease #chronicpainwarrior #chronicillnesswarrior #chronicallyill #chronicpainawareness #sickallthetime #rheumatoidarthritis #fibromyalgia #ibs #fibrowarrior #lupus #lupusawareness #lupuswarrior #sle #pain #painwarrior #gastroparesis #ankylosingspondylitis #chronicillnessmemes #doctormemes #sickpost #sadbuttrue #endometriosisawareness #ms #crps #loinpainhematuriasyndrome
LOL sorry Gru, kale didn’t cure me♀️
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#ADD #ADHD #peoplehopetribe #cyclicvomitingsyndrome #panicdisorder #dyslexia #tourettes #epilepsy #fibromyalgia #gastroparesis #hashimotos #interstitialcystitis #mastcellactivation #mcas #cysticfibrosis #mitochondrialdisease #parkinsons #sjögrens #narcolepsy #sjorgrenssyndrome #peripheralneuropathy #asthma #congenitalheartdisease #musculardystrophy #chronicfatiguesyndrome #autism #addisonsdisease #gravesdisease #hypothyroidism #posturalorthostatictachycardiasyndrome
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