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#gastroparesis

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Fun service dog fact: I still do my job with or without the vest! Why? Because I absolutely love what I do! 🎉 Alerting to fainting spells, retrieving dropped items, providing counterbalance... It's my passion to help my girl because my work gives me a great sense of purpose. 😏 My gear does signal that I should enter a "professional" mode, but I can still behave this way without it if I'm given a specific command. ✔ Of course, I do get plenty of free time to be my goofy, playful self - But I'm still tuned in to my girl's health. We mainly use my gear to let others know that I'm actively working, and not to be disturbed. 🐕 #RespectTheVest So vest or no vest, I'm always happy to help my girl in the battle against her invisible disabilities! 💪♿
*If you're interested in my vest, check out our "Service Dog Gear Haul" video on our YouTube channel (link in bio)! 🎬
27 Months
#FunFact #Dog #ServiceDog #WorkingDog #DogTraining #DogsOfInstagram #Cute #GoldenRetriever #Puppy #Instapuppy #PuppyLove #InvisibleIllness #ChronicIllness #Spoonie #Disability #Asthma #Allergies #Anaphylaxis #ActuallyAutistic #Narcolepsy #Migraine #Dysautonomia #POTS #EhlersDanlosSyndrome #Gastroparesis #Fatigue #ChronicPain #Instagood

It's ok to just be downright frustrated sometimes. I've been having a really hard week symptom wise and there has been delay after delay in getting my treatment started up again (incorrect orders, insurance, shortage of IV supplies). I'm always tempted to just share the happy moments with y'all but the reality is some days with chronic illness are spent struggling to manage. But not only is tomorrow a new day, but 60 minutes from now is a new hour, 60 seconds from now is a new minute and some days you just take it minute by minute, hour by hour and know this too shall pass.

"Even when the dark comes crashing through, when you need a friend to carry you, and when you're broken on the ground, you will be found" You Will Be Found- Dear Evan Hansen/// This journey can be very hard, it is the raw truth. The hardest parts are when my illnesses impact my family, friends, and loved ones. The other challenging parts are when my health inhibits me from doing school work. Being discharged this summer the entire goal was for me to be able to do school, as it allows me to escape and grow in my life. With my new issues I have had lots of struggles with being able to focus on academics. In the past three weeks I have hit some "speed bumps". Some of the issues have been an increase in the frequency and intensity of my migraines, mental fog, 10 pounds of fluid retention, daily headaches, high blood pressure, and fatigue. Being TPN and IV fluid dependent makes it challenging to control fluid balances, and due to my intestinal failure, it is our only option. I dream of a day when I can eat and not deal with the consequences of the last resort of TPN (such as the swelling). There is lots of movement as to what our next option is for my CIPO. The new journey we are about to embark on is scary to look at, but this week I will open up my mind and share these new possible steps and options on my blog. I remind myself when things get challenging to be thankful to be alive. It's such a gift that we are all given. Thank you for being respectful as I have taken time to process things before sharing what is to come. You all have allowed me to use the blog as a platform to raise awareness and hopefully spread joy and peace: the two things my family and I hold onto when I am struggling. One thing we all agree on is we will never let health define us. We will always try to outshine the bad. Here's to continuing on with this crazy journey of life we are all embarking on. Even though it is not always easy, it is beautiful and a humbling experience. I strive to never take a moment for granted 🗻🏔 #littlethings #intestinalfailure #thepeacewithinthefight #isabellesfight #gastroparesis #cipo #findacure #weneedacure #tpn #tpndependent #migraine #chronic

CLC MEMBER FEATURE: Hi, from Denmark! My name is Jonas and I’m 29 years old. In 2008, I was diagnosed with Ulcerative colitis. A few months after this diagnosis, I suffered from salmonella. My colon was too infected and a stoma was the only option. I had just finished high school and had my whole life in front of me. I asked myself, “What will I do now?”

I was told that I should go through 3 operations so I could get rid of the stoma. But spoiler alert: It didn’t go that well. Today I have been through 6 bigger operations in my stomach and countless smaller ones; my stoma is still here and now I don’t have a navel.

From the beginning, I have been very positive. The stoma saved my life - it didn’t steal my life. The first few years was about experimenting with my stoma, my new life and myself. I needed to find myself and what I was capable of. I began to train, eat cleaner, and think of myself. This was the beginning of a new life for me.

I have come very far. I could have given up and stayed on my couch and done nothing, but hell no! Today I am in control - it’s not the stoma who decides where my life is going, but me! Of course, this positive thinking did not happen overnight. I have worked very hard to get to where I am.

Today, I want to inspire others and tell my story about my stoma. Don’t make it a taboo, because it’s not; it saves people’s lives and we are still normal. I’m happy that I have my stoma and I have decided to keep it (instead of trying to get rid off it again).

Thanks for listening! I hope that one day you can all say, “I decide over my life, not any sickness.” My goal is to be me (not a different me, because I have a stoma) but a new me, because of these new experiences. @jonasjuhlerolsen #chronicloveclub

Good news and bad news. 📰 Good news? After some rest, I bounced back from this most recent round of IVIG quite quickly! Bad news? After two separate ER visits, we found my feeding tube is badly kinked. 😫 I cannot run my feeds which means no nutrition. It will have to be replaced within the next few days. The alarming thing is that this is the second kink I've gotten, so it could be an ongoing problem. 😥 On top of all that there has been a slew of other frustrations. But, one thing at a time! Yesterday was exceedingly stressful, and yes, there were tears. I needed that moment of raw emotion, and now I'm able to keep moving forward. I may need to slow down, but I'm still going in the right direction. 💪
*To join us on the craziness, watch today's vlog (link in bio). #IVIG #FeedingTube #StayPositive #Strength #Blessed #SpreadAwareness #Advocate #ActuallyAutistic #Asthma #Allergies #Narcolepsy #Migraine #Dysautonomia #POTS #EhlersDanlosSyndrome #Gastroparesis #Immunodeficiency #ChronicPain #Spoonie #ChronicIllness #InvisibleIllness #Disability #ServiceDog #Puppy #Dog

¤ Surgery today went smoothly in itself, but it’s been a really rough recovery so far. He removed Endometriosis off of my Bladder (like last time), but this time it was on and removed from my Colon and Rectum as well.😪❣️ The good news is that it is still Stage 1 meaning it has not invaded my ovaries and affected my fertility yet. This was supposed to be day surgery, but when I woke up my pain was severe and uncontrollable so I have been admitted with a PCA pump. The hope is this will only be for tonight I will be able to switch over to oral medication tomorrow without a problem and be able to be discharged. Thank you Brave Gowns for creating soft, comfortable gowns that have trendy designs which help me express and feel more like myself instead of feeling “blah” in a scratchy gown. Like my nurse said, “you may not be smiling, but at least your gown is!!”. I couldn’t wear it in surgery, but my nurse and mom helped me change into it once I was admitted and settled into my room. Also, thank you to everyone for the kind messages and prayers - sorry if I haven’t responded much, but I’ve been having a rough time so I haven’t been on my phone much or for long periods at a time....💜🏩 #beadsofcourage #binkeezforcomfort #bravegowns ¤

I've been having more increased abdominal pain & reflux lately. This morning, I went in for an upper endoscopy & found that things look good from a Crohn's standpoint on my upper end. However, it wouldn't be me without having some sort of finding.
I am the owner of a brand new hiatal hernia. 👍🏻 I can't totally remember what Dr.Schwartz said, but grandmother said it was a small one. So for now, all's well.
#StatusQuo

Eat, exercise, sleep, repeat. Beat #Gastroparesis and #IC! 😃✌🏼️

MOST RECENT

Busy days made better by @cookiedohco

MOOD.🌅

Morning essentials 😂#spoonieedition #spoonieproblems
On a different note, does anyone else here flush potassium chloride through their NG or GJ tube? I always get this sick feeling after I flush it, so I am wondering if there would be another solution. (Or at least I know I am not the only one, haha) I truly hate the aggressive potassium 👺

"You don't look sick." Well yeah. That's because ever since I got sick you stopped coming around so now you only ever see me with makeup to cover my hollowing cheeks and dark bags under my eyes. You only see me with a filter on Snapchat. You only see what I fabricate. You don't see the 20 pounds I've lost. You don't see the hair loss from my malnutrition. You don't see me sitting on the couch instead of out in the mountain for hours on end. I'm lucky if I get to go up there for a short while with the camera. But mostly you don't see me being judged because I "don't look sick". So thank you for joining the crowd that has already judged the book by the cover. This has been "thoughts every chronically ill person has or will have" with Chronically Jane. Goodnight.

When I’m in a #gpflare? It’s so much EASIER to look nice and just #smile. Let people think what they want. For me, it’s a #wasteoftime to explain something that can be so #horrible and #indescribable. Maybe I don’t feel like talking about it bc it’s #depressing Or I feel like death...literally. People can’t understand how we are feeling, which I find, VERY #frustrating. In a bad run of days? Many will say you look nice. (Me in my head. “Bahahaha. I just FINALLY showered! Doesn’t take much to look better than haggard. Haha.”) But sometimes it’s the ABSOLUTE #truth! People SEE WHAT THEY WANT to see. If they really care? You’ll know. I do. It’s easy to spot #genuine vs. just being polite. If they’re just being #polite? I find it MUCH easier to let them #assume whatever that may be. I truly don’t care what that might be. Bc I KNOW. That’s ALL that matters. I have learned to ONLY #focus on what I #CANcontrol and that’s me and my reactions. #growth I’ve made #progressnotperfection. #normalisboring #gplife #gpprobs #gastroparesis #gastroparesiswarrior #gastroparesisproblems #gastroparesislife #begenuine #bekind #beyou

My dad tagged me in this meme and said this is me...my dad’s so fuckin awesome ☺️❤️ “Repeat after me: I am a fucking awesome person who has dealt with so much shit and have made it through it all and am still cute af and smart and funny and nice and intelligent and I kick ass!” 😎👊🏻💪🏻💚
#lymiemomma #lymiemommaofirishtwins #lymedisease #lymediseaseawareness #chroniclyme #lymestrong #lymesurvivor #lymefighter #lymewarrior #babesia #bartonella #gastroparesis #fibromyalgia #neuropathy #chronicmigraines #hypoglycemia #degenerativediscdisease #pcos #tattooedmomma #tattooedgirls #momswithink #momswithtattoos #monsofinstagram #girlswithink #girlswithtattoos #girlswithglasses #girlsofinsta #nomakeup

Today’s been one of those “ try to get your crap body to semi function kind of days. “
I even had to drink that “special drink” every person with GP ( or gastric motility disorders knows so well) that’s “ delightfully” lemon flavored 🤢😈. ( The more I take medicine the more I’m convinced the makers of medicine have no idea what fruit taste like ) Let’s just say I hope 💩💩💩 gets real tonight.. LITERALLY. Keep your fingers crossed. And always smile on.
#chronicillness #pooppills#pooppowders#pooppotions#omy #sickchickstrong #thefight #gastroparesis #smileon🐷

One of Izzy and Dyre's most important alerts is blood sugar. I can pass out and be fine if they miss a cardiac alert, I can hide away in darkness if they don't let me know about a migraine, but their blood sugar alerts save me AND people around me. I typically don't get symptoms from my hypoglycemia until it's urgent-- until I'm down at 45 or lower. Today, I was driving around. Driving with a low blood sugar isn't recommended for anyone, and I didn't even know I was doing it. Izzy alerted then, and I easy able to take a glucose tab and get food to bring it back up. But if she hadn't alerted, who knows how far I would have dropped? While driving, potentially putting other people in harms way. Thankfully, I have this girl and Dyre, and they keep me safe. ×
#chronicillness #invisibledisability #invisibleillness #chronicmigraines #chronicpain #autoimmune #eds #ehlersdanlossyndrome #hypermobility #connectivetissuedisease #butyoudontlooksick #hypoglycemia #hypoglycemic #inappropriatesinustachycardia #gastroparesis #pots #doberman #dobermanpinscher #reddoberman #dobermanpuppy #dobermans #dobermanpride #dobie #reddobie #servicedogprospect

On Wednesday, it was my 1 year anniversary of being diagnosed with gastroparesis. It's been one hell of a year. From being optimistic to the doctors telling me there is nothing else they can do besides give me a permanent feeding tube and hope my stomach gains motility. The year has brought on diagnosis after diagnosis until we finally got our answer of why I have all of these things. Ehlers Danlos Syndrome. I may depend on a feeding tube and weekly infusions, but I'm still standing. I will most likely be getting a port in the near future. Although that scares me, it means I am one step closer to getting better. I am excited to announce that I am officially part of the bead organization Beads For The Brave. I have received beads from them and wanted to give back and I found my opportunity. My bead string may grow but I know I am not alone in this fight as I fill out orders for other warriors. Stay Strong! 💪🏻 #typeonediabetes #gastroparesis #gastroparesissucks #gastroparesiswarrior #pots #potssyndrome #posturalorthostatictachycardiasyndrome #mcad #gjtube #ehlersdanlossyndrome

Baby got back. Well, baby got a vertebral column...the thoracic portion. Whatever. Baby got back! 🤦🏻‍♀️😂 #mybrainisspecial

This evening I got to have a night out with friends, just like me, who suffer from Dysautonomia. If you didn't notice it, the Duke Energy Building in Uptown was light up in turquoise for us in honor of Dysautonomia Awareness Month. I'm blessed my condition is in a better state right now, but hearing everyone's stories reminded me how fragile life is, and how, just at the beginning of this year, I was fighting for my own life. Tonight reminded me how precious this life of mine is, and how blessed I am to hopefully become an influence for others who struggle with the same diagnoses. 🌎 #nevergiveup #dysautonomiastrong

day four of #100day2thlesschallenge. watching this back, i notice her jump on me three times (you might only see two depending on where it cuts off). i wonder if that was like... a playful alert? it was about 30 minutes before her blood sugar alert, so i was definitely already low? because she typically doesn't jump on me in public unless i ask her to. it might also be that she didn't have her vest on. who knows. here's our mistake filled video. aaaand on that note, here's my goal: by the 100th day of this challenge, i want to have 0 mistakes in our video to show progress. to stay true to that progress, i will post the "worst" video i took each day. ×
#doberman #dobermanpinscher #reddoberman #dobermanpuppy #dobermans #dobermanpride #dobie #reddobie #servicedogprospect #dogsofinstagram #petsofinstagram #dogsofig #petsofig #chronicillness #invisibledisability #invisibleillness #chronicmigraines #chronicpain #autoimmune #eds #ehlersdanlossyndrome #hypermobility #connectivetissuedisease #butyoudontlooksick #hypoglycemia #hypoglycemic #inappropriatesinustachycardia #gastroparesis #pots

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