gerd gastroparesiswarrior gastroparesis chronicillness spoonie chronicpain invisibleillness crohnswarrior acidreflux celiacdisease celiacdiseasewarrior crohnsdisease giwarrior ibdwarrior ibswarrior ulcerativecolitis ulcerativecolitiswarriors chronicallyill chronicpainwarrior potsie ehlersdanlossyndrome posturalorthostatictachycardiasyndrome chronicillnesswarrior dysautonomia edszebra edswarrior pots chronicfatiguesyndrome dafbama2018souhila
I look forward to the day when I don’t have appointments every week. I think back and realized I have seen the doctor at least twice a week for the last 8 months. Crazy...I see my doctors and nurses more than my friends. Just having one of those days where I’m sick and tired of being sick and tired. ♀️
We clean up nice... well maybe not in this first picture but the second one for sure. what an amazing premiere for the @becomingincurable documentary! This film really shows what it is like to live with a chronic illness. Please go check them out and show some love! Help me spread the word about this incredible film! #becomingincurable #documentaryfilm #chronicillness
Here's a little hospital selfie from last week when one of the nurses brushed/braided my hair for me
It's been about 3 weeks since I've had solid food and a little over 2 months since I had a "normal" sized meal. I'm starting to get really bad headaches on top of my usual terrible head pressure/migraines and it's really starting to get in the way of things. It's been so hard to think or just be awake lately. Has this happened to anyone? What did you do to help it? Right now I'm still on an all liquids diet (ensure clear and water) and have been trying bananas but it takes me well over 4/5 hours to eat one. Also if you have any experience with a NJ or ND tube I would really appreciate it because I have a feeling if things dont get better by the time I see my GI next month they may want to tube me since it was talked about while I was in the hospital but I'm not sure which they would do.
I'll be doing a more detailed post that'll be staying up about what gastroparesis is and what's been going on lately I just really could use some support right now from someone who gets it
#invisibleillness #chronicallyill #spooniesupport #gastroparesiswarrior #njtube #disability #gastroparesisawareness #spooniecommunity #eds #ehlersdanlossyndrome #chronicillness #gastroparesis
Another #transformationtuesday celebration ♥️ I know many of you pray for and follow my husband’s journey as well, and I wanted to give an update on his progress ♥️ A picture is worth a thousand words—back in March when he was fighting for his life, I craved to see that smile I see on the right. God is so good.
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Larry’s been using the vagus nerve stimulator twice a day now for about three weeks. He’s also been taking antibiotics to treat a bacterial overgrowth in his intestines. Initially, the antibiotics were awful—he couldn’t get out of bed for the first 10 days. But slowly, his body adapted and he has been more functional overall. He was even able to enjoy a great weekend—full of quality time with our princesses and even a date night in over dinner
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In the 8 weeks since starting TPN, he has gained 14 pounds!!! This is such a victory! He has also been able to eat for taste without vomiting every time. TPN has literally been a saving grace. He is still dealing with profound fatigue, nausea, and pain, but he is so strong continues to take this cross up daily.
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We are so thankful for his doctors who provide exceptional care. We return to Stanford in July. In the meantime, he will continue TPN, have weekly nurse visits, use the vagus nerve stimulator, and take the new medications prescribed by his physician.
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God is good. So good. Thank you for your prayers and encouragement!! Please continue to pray for miraculous healing. We count all these victories and know Jesus is at the center of them.
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I love you, Larry! I’m so proud of you! ♥️♥️♥️
What a difference 7 years can make! Mother’s Day 2012 I had the worst relapse of my life, leaving me totally paralysed from the neck down. -
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Back then I was unsure if I would survive the night, let alone regain upper body function. There was no way I could have imagined I would be leading the incredible, fulfilling life I am now. -
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It took me eight years of being stuck in bed every single day to make the decision that I wasn’t willing to accept that as my life anymore. It goes to show the benefits of positive thinking, dreaming big and setting goals -
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When I said I was going to do a marathon, I could barely even get myself out of bed, let alone push 42km, but I knew if I didn’t try, then there would never be any chance. I mean, what did I have to lose ♀️ -
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Mindset is EVERYTHING! The biggest goals are the hardest to achieve but the knowledge you gain on the journey is well worth the struggle.
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I have found strength, determination and resilience I didn’t know I possessed, and am so proud to be using my journey and newly developed skills to help others -
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So here’s to chasing dreams and rainbows, and changing lives -
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#athelte #wheelchairathlete #wheelchairracer #wheelchairracing #chasingdreams #excitedmuch #raceprep #wheelchairlife #t1dlookslikeme #t1d #paralysis #paralysed #paralyzed #wheelchairwarrior #gastroparesiswarrior #diabadass #paraathlete #positivethinking #mindsetiseverything #chasingdreams #changinglivesdaily #goalsetting #livingdreams #liveinvincable #teamcaf #heroofsport
Having a little fun at the ATSA Independent Living Expo in #brisbane yesterday... don’t get to be in this position often these days, so absolutely made the most of the opportunity to be taller than a munchkin for a change hehe -
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Loved trying out the @empower_golf_qld paragolf chair. Awesome piece of AT. Going to not only attempt golf but also try a stand up boxing session in it soon #excitedmuch haha
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Gotta say, this stand up, all terrain bad boy, the #actiontrackchair by KCF Engineering, was also a huge amount of fun! Would have liked to have gotten it outside on some local sand dunes. But without a spare AUD$38,000, it wasn’t happening any time soon -
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I usually have $38,000 in spare change in my pocket but wore pants without pockets, so unfortunately didn’t have enough cash lying around, so didn’t come home with anything fun lolSomething to aspire to though
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#lifewithoutlimits #liveinvincable
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