#gastroparesis

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This just sums how my day started yesterday and god it's actually just got worse and worse .. the drs came with some sad news that I am still processing at the moment but I'm extremely grateful to the people who were there for me tonight and a massive shout out to my favourite girl @jodes_connie who been the stars on my eyes from the moment I saw you ๐Ÿ™ˆ. I'm done .. this isn't about being strong anymore .. I am strong but I'm too tired to fight.. maybe letting go is me being the strongest #invisibleillness #surgery #struggling #strength #gastroparesis #gastrectomy #chronicillness #palliativecare #chronicnausea #weightloss #dietitian #chronicallyill #feedingtube #stomachulcers #doctors #spoonie #nurses #malnourished #sepsis #hospital #weightlossjourney #nutrition #crohns #TPN #pituitarytumor #addisonsdisease #autoimmunedisease #crohnsdisease #pancreatitis #kidneydisease

In Arizona for the weekend speaking at the National Scleroderma Foundations Patient Education Conference ๐Ÿ’™ #discoveryinthedesert #scleroconf #scleroconf17 #scleroderma #njtube #feedingtube #gastroparesis #systemicsclerosis #sclerodermafoundation #publicspeaking #patienteducation #medicalconference

AWARNESS POST!! *no hate or rude comments they will not be tolerated and will be removed*

Due to a recently increase of people thinking tubes are "fun" or "some easy fix" and they just want them because they can't "be bothered" to eat or for whatever unessacary reason here is what it's really like to like with a debilitating illness and NEED a tube as a last resort! My BMI dropped to 14! Before I got a tube and it was the very last option!!! I had tried everything else, every medication, and every oral supplement there was to try and gain weight but in the end the NJ was my only option and I now rely on it for ALL of my nutrition and fluids, this is not somthing I can just take out if it gets on my nerves! This is keeping me ALIVE not some prop for attention or just because! I hate being so underweight it's the most awful thing! Not being able to get warm, you can't get comfortable in bed or a chair because your bones dig in and cause pain, you can't find clothes that fit so you resort to children's clothing, even struggle to cuddle my boyfriend without causing us both pain from my bones digging in! Tubes are not somthing you rush into without having tried any every other option available! And if your doctor isn't offering you meds or supplements get a second opinion! Find a different doctor! I can't tell you how much I want a tube free life! I would even go back to being sick every day if it meant I didn't have to rely on a pump and tubes to keep me alive! This is not a joke! It's reality for people like me. People with gastroparesis, people with motility issues and other problems that require feeding tubes! I can't tell you how much it upsets us and offends us when someone wants a feeding tube "just because" We DEPEND on feeding tubes, this is NOT a choice. #feedingtube #awareness #gastroparesis #nohate

When your @vitalityextracts essential oil necklace diffuser comes in the mail and you de-access your port and treat your skin to some much needed scratching lol #goodday #doesnttakemuch for those that talked with me yesterday I greatly appreciate it!! I ended up stopping the reglan because I started to have tremors this morning. Will be calling on Monday to see what the next step is ๐Ÿ˜Š

That face when you get surprise #cryotherapy...cuz nothing perks a person (or nipples) up during a 13-hour day at #TonyRobbinsUPW like being butt nekkid at -240 degrees in a room full of fellow health freaks. Thank you for the VIP treatment, Harch Hyperbarics! #belowfreezing #nipsfordays #freethenipple #science #alternativehealing #Jersey #unleashthepowerwithin #tonyrobbins #bjjgirls #motivation #fighton #wellness #recovery #CIPO #IBD #raredisease #chronicillness #chronicallymotivated #mmagirls #smallvictories #dysmotility #gastroparesis #IC #gratitude #moveitorloseit #thosesockstho @tonyrobbins

HEY BODY,

I'm often at odds with you. I went from just feeling self-conscious about my short legs, to having to accept damage from medical device after medical device, surgery after surgery. Disease progression and treatment has caused my face to plump and chins go grow in number. Weeks, months of being bedbound has caused my muscles to atrophy. Malnutrition + vitamin deficiencies has caused my hair to thin and bald spots to form.

It's easy to feel less than beautiful with this type of wear at such a young age.
Paralysis, sepsis, atrial fibrillation, pacemakers, defibrillators, strokes, feeding tubes, formula, central lines, total parenteral nutrition....these aren't words typically in a young adult's vernacular but they're my norm.

Emery-Dreifuss Muscular Dystrophy...you've tried and tried again to beat me. You may have changed my body and daily vocabulary....but you have not broken me. My scars prove my strength. They're constant reminders of battles I've overcome.
HEY BODY...thanks for fighting hard - you're beautiful just the way you are.

#inthisbody #disabledandcute

3 gros projets dans lequel je donne tout mon temps et mon coeur sont en cours, je vous ferez un live ร  16h pour vous donnez de mes nouvelles.
#cysticfibrosis #cystiquefibrosic #mucoviscidose #muco #gp #gpwarrior #gastroparesis #gastroparesie #projets #reve #association #gastroparesiswarrior #smile #like4like #likeforlike #likeforfollow #likes #like4follow #instadirect #edwarrior #musique #sport #book

Nova-Day 69

Papaw ventured out of Henry Co again to see his girl!
Today is day 3 without the tube and she isn't taking the volumes we had hoped. Just enough to stay hydrated. We are giving it one more day before placing the tube again. ๐Ÿ˜•

#diabetic #diabetes #diabeticlife #t1d #type2diabetes #gastroparesis #braintumor #infertility #boxermom #fibromyalgia #ttcsisters #nicu #nicumom #nicubaby #niculife #nicugrad #postpartum #4thtrimester #fourthtrimester #csection #momlife

MOST RECENT

#moods #today #music # slow start today but I will get to all the things I missed yesterday which was basically day 3 of the 30 day challenge for chronic illness challenge stay tuned I have lots to do today I'm not feeling so great today #Major #gastroparesis #flare today so I'm sort taking it easy and I will get my post up as soon as I can they probably will shorter today then previous days... vs. How they have been in the last couple days because I need to get myself up to speed but just want to #thank all the #new #followers and all the #wonderful #comments #left on my recent #posts of #content I've been sharing recently โ™ก thank you so much for all your support!!!!! โ™ก

Speeltijd๐Ÿถโค๏ธ #shihtzu #shihtzupup

MALS is a anatomy problem where a ligament squeezes an artery and causes GI symptoms and weight loss.
With weight loss there may be less room under the SMA and the renal vein may be compressed causing #nutcrackersyndrome - if the intestine is compressed then food backs up and #gastroparesis can be a symptom of #SMAS #superiormesentericarterysyndrome #shitshow #leftflankpain #vascularcompressionsynsrome

Latest nutritional experiment... full review of #amazinggrass #greensuperfood will be out this week! #superfoods #wheatgrass #liquiddiet #gastroparesis #gastroparesisdiet #dysmotility #foodismedicine

What a difference in just a few months!
This is a mix of the Gastric bypass and my Gastroparesis.
#gastroparesis #mygpreality #gastricbypass #gastricstimulator #fibromyalgia #fightingtosurvive #formertubie

Broken. But still beautiful. ๐Ÿ’•๐Ÿ› if you are struggling- I see you, I hear you. You are not alone. You will get trough this patch, #flareup, #anxietyattack , #bingepurge episode. I promise you. If you hang tough you WILL make it out. Have faith, believe. I'm always here for anyone who needs to talk #gastroparesis #strong #healthyeating #broken #beauty #blog #inspire #liftothersup #recovery #bingeeatingdisorder #edrecovery #yougotthis

forgot to post this but thank you for being my long lost blonde bff, shotgun rider, el maz date, going with me to my dr appts and ultimately taking care of me while I was practically dying yesterday. @maelievonne โœจ๐Ÿ’œ๐Ÿ’›๐ŸŒป๐ŸŒˆ ily so much boo & thank you for everything ๐Ÿ’•
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#spoonie #tubie #pancreatitis #anemia #chronicallyfabulous #chronicillness #gerd #gastroparesis #gastritis #cure #awareness #insomnia #butyoudontlooksick #invisibleillness #depression #anxiety #spoonielife #selflove #bodypositive #acceptance #confidence #beautiful #bpd #inpatient #psychhospital #recovery #recoveryisworthit

Well....I managed to make it over a year without any hospital admission. Guess that's what I get for being braggadocios abound not being that sick lately. Anywho I've been admitted too Sampson Regional for a severe pancreatitis flare up and an infection. ๐Ÿ˜ซ๐Ÿ˜ท f u cranky pancreas ๐Ÿ–•๐Ÿป ain't nobody got time for all that mess ๐Ÿ™…๐Ÿป๐Ÿšซ .
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#spoonie #tubie #pancreatitis #anemia #chronicallyfabulous #chronicillness #gerd #gastroparesis #gastritis #cure #awareness #insomnia #butyoudontlooksick #invisibleillness #depression #anxiety #painsomnia #pain #nausea #spoonielife #selflove #bodypositive #acceptance #confidence #beautiful #bpd #inpatient #psychhospital #recovery

"The universe is not short on wake up calls. We're just quick to hit the snooze button." -BB

Restorative yoga and superfoods to prepare for another week!
Our prep week has been nothing short of amazing! So many are starting this program tomorrow and it's not too late to join us!This is your sign! Stop hitting the snooze button on your health, friends! I have 3 spots left! Are you in? .
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#diabetic #diabetes #diabeticlife #t1d #type2diabetes #gastroparesis #braintumor #infertility #boxermom #fibromyalgia #ttcsisters #nicu #nicumom #nicubaby #niculife #nicugrad #postpartum #4thtrimester #fourthtrimester #csection #momlife #topknotmakestheshift

Day 57. #the100dayproject #100daysofwhatistrue
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I want to thank everyone who has been so encouraging during my project and in past shares. ๐Ÿ’›
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I do try to have a good attitude and I try to find joy and love in the everyday moments because every day is a gift.
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But there are times where I struggle immensely. I am human as we all are. I cry, I swear, I have a crappy attitude, I am angry, I am bitter.
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I wonder why the hell I have been given this pain and exhaustion and burden. And it's not just the illness, there are other things I have not yet shared. It sucks.
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So yea, life sucks a lot. But my stuff is no worse than anyone else who is struggling. Please don't admire me for dealing with what I've been given. I wouldn't choose this for anyone, and I certainly never would have chosen it for myself.

So today I got to do something for this lovely girl, G, and for her sister @bumblebeeliz we went to swarovski and bought rings for the three of us. G loves classical old world stuff so she chose this beautiful ring in rose gold. It's very delicate and fine just like she is. I loved that she knew what she wanted and that she was so thankful for it. L chose the same ring as me but in rose gold (mine is silver but rhodium plated). I'll take photos tomorrow. It was so fun to do this for the girls. We then went for a drive next to the swan river which was very pretty and the pink house in the photos here is the house that L decided she wants to own :). We then drive via the coast and a nudist beach(!) On the way home!!! Tonight we watched the new version of Annie which was nice. I do like the Annie films!! Tonight I'm very very tired and I'm in a lot of pain mostly in my legs but also my stomach and lower back. I think I'll be taking above my usual pain meds tonight (don't worry it's not overdosing). I noticed that I've been dissociation more which is pretty normal when I'm tired and in a lot of pain but I want to be present and not waste my time here so it's a bit frustrating. I go home tomorrow :( boo! But I'm worried about Ellie so it's probably a good thing (will fill you all in once I'm home and can see her with my own eyes!). Love ya all! #peoplehopetribe #perth #holidays #swarovski #rings #chronicpain #chronicpain #gastroparesis #mecfs #ehlersdanlossyndrome #dissociativeidentitydisorder #nudistbeach #swanriver #indianocean #catsofinstagram #singapura #singapuracatsofinstagram #lovingbeinghereandwishingitwasntsofaraway

Because of a post i put on facebook about raven on big brother this is what i get...also threats of having cps called on me..for real?!?! They have no case at all..ive forwarded the screenshots to my boss and the authorities...even ravens mother is involved in these childish antics!! I have had gastroparesis for 3 yrs...i voiced my opinion..since it wasnt in favor for raven i get threatened!!! Well, goodluck sweetheart...
#gastroparesis #bigbrother #ravenbigbrother #notscared #dealwithit #myopinion #freespeech

โ—๏ธQ: Does anyone have experience w Genelex testing? ๐Ÿ‘‰๐ŸปMethadone isn't working the way it was in the beginning, which is to be expected, but despite upping the frequency as much as we possibly can, it still only lasts a few hours. Despite increasing the dose, I don't feel much more relief(although it's still a relatively low dose) When I started methadone, I could sleep, and now I'm back to before methadone where I'm up all night unable to sleep from pain. My pain mgmt dr said she thought this would happen, bc of EDS, since I don't respond to some drugs(fentanyl,etc) She didn't expect it to start wearing off at 2 1/2 hrs. I'm thinking of asking about Genelex, to see if that can tell us how fast I metabolize methadone so we can tailor the dosage. Any advice or knowledge would be appreciated ๐Ÿ‘๐Ÿปโœจ #EDS #ehlersdanlos #ehlersdanlossyndrome #gastroparesis #intestinaldysmotility #tpndependent #digestivetractparalysis #dysautonomia #potsie #craniocervicalinstability #chiarimalformation

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