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Seriously.  Violently take it back.
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I get what a difficult time of year this can be when you are in pain, or when you are battling anxiety, depression, grief, or any other difficulty du jour. ...
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It feels disingenuous to say you are thankful when, in reality, maybe you are still trying to figure out why this happened to you.  When you would gladly trade your life for anyone else’s at the Thanksgiving table.
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When it’s your turn to say what you’re thankful for, and everyone else has said their health, and you can’t and tears start to well up...
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That’s the very moment we need to be intentional about stealing back some beauty.  We need to plunder every nugget of good, of peace, of joy, and marinate in the pockets of goodness.
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And if you’re sitting there, tears welling up, go ahead and cry.  Go ahead and be true to how you are feeling, but then look up and listen to your niece giggle.  Or watch the way your mom smiles when she looks at how much everyone is loving what she cooked.  Or let yourself feel the way the music playing in the corner climbs up your spine and into your chest. ...
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When we’re in pain, we have to be scavengers of the beautiful moments.
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And as you find them this week, if you don’t mind sharing, list them below. ...
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#plunder #beauty #chronicillness #interstitialcystitis #IC #heal #healing #hopeforhealing #spoonie #spoonies #encouragement #hope #justkeepswimming #keepgoing #ikeepgoing #instagood #instahope #inspiration #inspired #writing #writingblog #writersofinstagram #chronicblogs #autoimmune #chronicloveclub #invisibleillness #butyoudontlooksick
Seriously. Violently take it back. ... ... I get what a difficult time of year this can be when you are in pain, or when you are battling anxiety, depression, grief, or any other difficulty du jour. ... ... It feels disingenuous to say you are thankful when, in reality, maybe you are still trying to figure out why this happened to you. When you would gladly trade your life for anyone else’s at the Thanksgiving table. ... ... When it’s your turn to say what you’re thankful for, and everyone else has said their health, and you can’t and tears start to well up... ... ... That’s the very moment we need to be intentional about stealing back some beauty. We need to plunder every nugget of good, of peace, of joy, and marinate in the pockets of goodness. ... ... And if you’re sitting there, tears welling up, go ahead and cry. Go ahead and be true to how you are feeling, but then look up and listen to your niece giggle. Or watch the way your mom smiles when she looks at how much everyone is loving what she cooked. Or let yourself feel the way the music playing in the corner climbs up your spine and into your chest. ... ... When we’re in pain, we have to be scavengers of the beautiful moments. ... ... And as you find them this week, if you don’t mind sharing, list them below. ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... ... #plunder  #beauty  #chronicillness  #interstitialcystitis  #IC  #heal  #healing  #hopeforhealing  #spoonie  #spoonies  #encouragement  #hope  #justkeepswimming  #keepgoing  #ikeepgoing  #instagood  #instahope  #inspiration  #inspired  #writing  #writingblog  #writersofinstagram  #chronicblogs  #autoimmune  #chronicloveclub  #invisibleillness  #butyoudontlooksick 
CELERY UPDATE 
I have cut down my celery juice intake because some of the side effects of detoxing became far too much. It is important to note that when you have an illness such as MS etc and you are on medication you more than likely have a lot more toxins to flush out.
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Last week I upped my amount of celery juice as I had started small (slow and steady wins the race right?) WELL I quickly learned my body couldn’t cope with the recommended daily celery. I started getting extreme stomach pains and bloating, my lower back was aching and I felt extremely heavy and weighed down. The only thing I had changed that week was the amount of celery I was drinking so I decided to stop for 3 days and the bloating and pain slowly went away.
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I am back on it now but on a smaller amount and only a few times a week. Unfortunately healing is not one size fits all and you must alter methods to suit your bodies needs. I love the @medicalmedium and all his work and did see a difference when I was doing the smaller amounts but make sure you listen to your body and follow what it is telling you. Make sure you alter methods to suit you and remember we are all made differently and while one thing might work for some it doesn’t mean it will work for you. I really need to remind myself of this because I often get into the really tough debate with myself over western medicine and natural healing. It is very tough but as long as you’re trying that is the best you can do 💚
CELERY UPDATE I have cut down my celery juice intake because some of the side effects of detoxing became far too much. It is important to note that when you have an illness such as MS etc and you are on medication you more than likely have a lot more toxins to flush out. • Last week I upped my amount of celery juice as I had started small (slow and steady wins the race right?) WELL I quickly learned my body couldn’t cope with the recommended daily celery. I started getting extreme stomach pains and bloating, my lower back was aching and I felt extremely heavy and weighed down. The only thing I had changed that week was the amount of celery I was drinking so I decided to stop for 3 days and the bloating and pain slowly went away. • I am back on it now but on a smaller amount and only a few times a week. Unfortunately healing is not one size fits all and you must alter methods to suit your bodies needs. I love the @medicalmedium and all his work and did see a difference when I was doing the smaller amounts but make sure you listen to your body and follow what it is telling you. Make sure you alter methods to suit you and remember we are all made differently and while one thing might work for some it doesn’t mean it will work for you. I really need to remind myself of this because I often get into the really tough debate with myself over western medicine and natural healing. It is very tough but as long as you’re trying that is the best you can do 💚
The Mighty Well MedCase 💼💚💊💉🧬|| We are so honored to have been gifted the new @mightywell_ case. Basically we loved it and wanted to share with you guys what we use it for and what we would like to see in the next generation of the cases!
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It’s a pretty big case, like the size of a notebook and very durable. The good thing about this is that it fits a lot of stuff so you can easily go purse free. It has straps for blood sugar meter, test strips, and lancet. In the back it has a pocket where important cards can sit in and insulin pen can be secured in. The pages have a place for your id and it has a card to fill out with your information. The other pages can be used for pills, enzymes, and extra needles for insulin pen or @mygenteel lancet device!
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What we would love to see is different sizes for different conditions needs. For a CF patient without CFRD, like Lea, this maybe too big so if the size could be condensed down to fit a smaller inhaler, that would be perfect. Also maybe a few more pages for pills and other daily medications. For Tiffany, it works perfect the size it is bc of the size of my meter and other medications.
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Other than that, @mightywell_ is on to a great product to help out the chronic illness community! 🥰💚
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What do you use to organize your pills and other medications for the day??
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❌⭕️❌⭕️ Lea & Tiff
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#saltycysters #cyster #fibro #cysticfibrosis #curecf #cfawareness #cf #organdonation #organdonationawareness #recycleyourself #donatelife #taylorswift #lungs4tiff #health #love #hope #TiffGotLungs #laugh #dream #cure #doublelungtransplant #donatelife #Chronicloveclub #fivefeetapart #MightyWell #case #medication #lancet #diabetes #CFRD
The Mighty Well MedCase 💼💚💊💉🧬|| We are so honored to have been gifted the new @mightywell_ case. Basically we loved it and wanted to share with you guys what we use it for and what we would like to see in the next generation of the cases! — It’s a pretty big case, like the size of a notebook and very durable. The good thing about this is that it fits a lot of stuff so you can easily go purse free. It has straps for blood sugar meter, test strips, and lancet. In the back it has a pocket where important cards can sit in and insulin pen can be secured in. The pages have a place for your id and it has a card to fill out with your information. The other pages can be used for pills, enzymes, and extra needles for insulin pen or @mygenteel lancet device! — What we would love to see is different sizes for different conditions needs. For a CF patient without CFRD, like Lea, this maybe too big so if the size could be condensed down to fit a smaller inhaler, that would be perfect. Also maybe a few more pages for pills and other daily medications. For Tiffany, it works perfect the size it is bc of the size of my meter and other medications. — Other than that, @mightywell_ is on to a great product to help out the chronic illness community! 🥰💚 — What do you use to organize your pills and other medications for the day?? — ❌⭕️❌⭕️ Lea & Tiff — — • • • #saltycysters  #cyster  #fibro  #cysticfibrosis  #curecf  #cfawareness  #cf  #organdonation  #organdonationawareness  #recycleyourself  #donatelife  #taylorswift  #lungs4tiff  #health  #love  #hope  #TiffGotLungs  #laugh  #dream  #cure  #doublelungtransplant  #donatelife  #Chronicloveclub  #fivefeetapart  #MightyWell  #case  #medication  #lancet  #diabetes  #CFRD 
The past 6 years have been the wildest ride of my life. Lupus. Grad school. New jobs. Heartbreaks. Adventures. New diagnoses. A crazy journey loaded with so many changes. 🤷🏼‍♀️
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Know what never changes? I’d still cut a b*tch for some guac and a margarita. 🥰🥑🍹
The past 6 years have been the wildest ride of my life. Lupus. Grad school. New jobs. Heartbreaks. Adventures. New diagnoses. A crazy journey loaded with so many changes. 🤷🏼‍♀️ • Know what never changes? I’d still cut a b*tch for some guac and a margarita. 🥰🥑🍹
🛫IBD & AIRPLANE TRAVEL
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🛩Airlines and airports have varied provisions for providing care. You should get in touch with your airline at least 48 hours before you fly to let them know your requirements or any additional assistance needed. Your airline may ask you and your doctor to fill out a Medical Information Form (MEDIF).
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🛬A MEDIF is only valid for the flight you are taking and must be completed before you fly. If your condition is relatively stable and you fly regularly, you may be able to get a Frequent Traveller Medical Card (FREMEC) that can be used for multiple journeys.
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✈Many UK airports now offer a lanyard scheme for people with hidden disabilities to discreetly alert staff to their needs. The lanyards are available even if you do not need to use the special assistance service and may give you access to priority lanes at security.
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🛫Cabin air can be very dry, so drinking plenty of water and avoiding alcohol and caffeine should help to prevent dehydration.
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🔎For more information visit: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/travel-ibd
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Instagram: @thegrumblinggut
Facebook.com/thegrumblinggut 
Twitter.com/thegrumblinggut 
YouTube.com/thegrumblinggut 
www.thegrumblinggut.com
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#thegrumblinggut #beatthestigma #crohnsdisease #crohnsfighter #invisibleillness #chronicloveclub #crohnsandcolitisuk #crohnswarrior #travel #travelblogger #airplane #holiday #beachbody #bodygoals #ibdawareness #frequentflyer #travelphotography #vacation #vacationmode #crohnscolitis #ulcerativecolitis #chronicillness #instacrohns #sun #sea #sand #boweldisease #lovelife #holidaylove #love
🛫IBD & AIRPLANE TRAVEL 🔹 🛩Airlines and airports have varied provisions for providing care. You should get in touch with your airline at least 48 hours before you fly to let them know your requirements or any additional assistance needed. Your airline may ask you and your doctor to fill out a Medical Information Form (MEDIF). 🔹 🛬A MEDIF is only valid for the flight you are taking and must be completed before you fly. If your condition is relatively stable and you fly regularly, you may be able to get a Frequent Traveller Medical Card (FREMEC) that can be used for multiple journeys. 🔹 ✈Many UK airports now offer a lanyard scheme for people with hidden disabilities to discreetly alert staff to their needs. The lanyards are available even if you do not need to use the special assistance service and may give you access to priority lanes at security. 🔹 🛫Cabin air can be very dry, so drinking plenty of water and avoiding alcohol and caffeine should help to prevent dehydration. 🔹 🔎For more information visit: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/travel-ibd _______________ Instagram: @thegrumblinggut Facebook.com/thegrumblinggut Twitter.com/thegrumblinggut YouTube.com/thegrumblinggut www.thegrumblinggut.com 🔹 #thegrumblinggut  #beatthestigma  #crohnsdisease  #crohnsfighter  #invisibleillness  #chronicloveclub  #crohnsandcolitisuk  #crohnswarrior  #travel  #travelblogger  #airplane  #holiday  #beachbody  #bodygoals  #ibdawareness  #frequentflyer  #travelphotography  #vacation  #vacationmode  #crohnscolitis  #ulcerativecolitis  #chronicillness  #instacrohns  #sun  #sea  #sand  #boweldisease  #lovelife  #holidaylove  #love 
Day 19: Diabetes Essentials,
Okay I have a loooot of essentials to be honest. My life wouldn’t be the same without my 640G Insulin Pump, CGM, @mygenteel or my Apple Watch. What is your diabetes essential?
Day 19: Diabetes Essentials, Okay I have a loooot of essentials to be honest. My life wouldn’t be the same without my 640G Insulin Pump, CGM, @mygenteel or my Apple Watch. What is your diabetes essential?
We made it and we are having so much fun!! We hung out with some gators, killed some beignets, and we are just enjoying being present and living in the moment. So thankful💛 and thanks to everyone who sent me sweet messages! Also, stay tuned for some fun vlogs coming soon😁 today’s encouragement: don’t wait to live your life, learn to live despite your circumstances💝
We made it and we are having so much fun!! We hung out with some gators, killed some beignets, and we are just enjoying being present and living in the moment. So thankful💛 and thanks to everyone who sent me sweet messages! Also, stay tuned for some fun vlogs coming soon😁 today’s encouragement: don’t wait to live your life, learn to live despite your circumstances💝
FYI 💛 • 📷: @albertdrosphotography #chronicloveclub
Don’t mess with me.⛏😜
Don’t mess with me.⛏😜
It’s not about perfect. It’s about effort. When you implement that effort into your life. Every single day, that’s where transformation happens. That’s how change occurs. Today I lifted heavier on every move than I ever have. You have the power to change too. Keep going & keep fighting!
It’s not about perfect. It’s about effort. When you implement that effort into your life. Every single day, that’s where transformation happens. That’s how change occurs. Today I lifted heavier on every move than I ever have. You have the power to change too. Keep going & keep fighting!
last day before break and i had lots of fun so far! i'm busy but i get to see my favorite sister soon! plus @katrinasbrain nommed me for an amazing opportunity! peep me story for more 💛🧡
song: hero by family of the year 🎸
tags:
#friends #trina #brain #girlswhoaresicktogethersticktogether #gastroparesis #sisters #spooniesisterhood #chronicloveclub #chronicillness #migraine #music #allergies #anxiety #ednos #eosinophilicesophagitis #happy #health #awareness #invisibleillness #fight #webewarrior #healthbeme
last day before break and i had lots of fun so far! i'm busy but i get to see my favorite sister soon! plus @katrinasbrain nommed me for an amazing opportunity! peep me story for more 💛🧡 song: hero by family of the year 🎸 tags: #friends  #trina  #brain  #girlswhoaresicktogethersticktogether  #gastroparesis  #sisters  #spooniesisterhood  #chronicloveclub  #chronicillness  #migraine  #music  #allergies  #anxiety  #ednos  #eosinophilicesophagitis  #happy  #health  #awareness  #invisibleillness  #fight  #webewarrior  #healthbeme 
AROOOOOO!

My muscles we're holding up just fine but my fingers not so much ❄️. It was a chilly day at Fenway Park for the @spartanrace Fenway Sprint. Also was the first year I didn't have to veer off to sprint to the bathroom 😅
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#crohns #crohnsdisease #crohnslife  #chronicillness #immunosuppressed #chronicloveclub #clc  #ibd #ibdwarrior #ibdsuperheroes #crohnie #run #running #fitness #ibdsuperheroes #fitlife #fitfam  #noexcuses #fitnessmotivation #crohnswarrior #fitnessmotivation #spartan #spartanrace #ocr #fenwaypark #aroo
AROOOOOO! My muscles we're holding up just fine but my fingers not so much ❄️. It was a chilly day at Fenway Park for the @spartanrace Fenway Sprint. Also was the first year I didn't have to veer off to sprint to the bathroom 😅 . . . . . #crohns  #crohnsdisease  #crohnslife  #chronicillness  #immunosuppressed  #chronicloveclub  #clc  #ibd  #ibdwarrior  #ibdsuperheroes  #crohnie  #run  #running  #fitness  #ibdsuperheroes  #fitlife  #fitfam  #noexcuses  #fitnessmotivation  #crohnswarrior  #fitnessmotivation  #spartan  #spartanrace  #ocr  #fenwaypark  #aroo 
No inspirational caption... it just is what it is
No inspirational caption... it just is what it is
A Week of Thankful - Some events in your life will have a profound impact on the person you become. I was four years old, I told my mom I wanted to walk to Wawa myself to buy candy. The Wawa was about five blocks away along a very busy road. I remember clearly walking those sidewalks in the rain, filled with so much confidence and pride. I remember feeling strong even though I’m sure my little legs were tired and very wet. I felt so grown-up going on this adventure on my own. When I finally got to Wawa, I waited at the door for another customer because it was too heavy for me to open. I can clearly remember that Wawa smell as I entered the store filled with excitement. I don’t remember many details after that. My mom told me she followed me the whole way, in her car, with her flashers on making sure I was safe. She told me her stomach was in knots watching me go, yet she knew the importance of this moment for me. She told me how hard it was not to run out of the car to open the Wawa door. Harder still was when I disappeared into the store and she lost sight of me. Eventually I came back into view, I went to pay but the cashier couldn’t see me. She held her breath until finally another customer came to pay and pointed me out to the cashier. The same customer walked me out of Wawa. He saw my mom waving frantically to him, somehow letting him know I was safe and thanking him for the help. All this communication done silently through her car window. Years later I would tell my mom how much this adventure meant to me and how it changed me. She always told us we were strong and could do anything. My mother always thought If we believed we could do something it was her job as our mother,  to let us go, give us encouragement and then stand back watching from the sidelines. Thanks Mom for this gift and for all the other times you encouraged me, watching from the sidelines.
In honor of Peggy Masterson, my mom, 1934-2007 #empoweringwomen #thankful🙏 #badmoms #chronicloveclub #beyourself #chronicpainwarrior
A Week of Thankful - Some events in your life will have a profound impact on the person you become. I was four years old, I told my mom I wanted to walk to Wawa myself to buy candy. The Wawa was about five blocks away along a very busy road. I remember clearly walking those sidewalks in the rain, filled with so much confidence and pride. I remember feeling strong even though I’m sure my little legs were tired and very wet. I felt so grown-up going on this adventure on my own. When I finally got to Wawa, I waited at the door for another customer because it was too heavy for me to open. I can clearly remember that Wawa smell as I entered the store filled with excitement. I don’t remember many details after that. My mom told me she followed me the whole way, in her car, with her flashers on making sure I was safe. She told me her stomach was in knots watching me go, yet she knew the importance of this moment for me. She told me how hard it was not to run out of the car to open the Wawa door. Harder still was when I disappeared into the store and she lost sight of me. Eventually I came back into view, I went to pay but the cashier couldn’t see me. She held her breath until finally another customer came to pay and pointed me out to the cashier. The same customer walked me out of Wawa. He saw my mom waving frantically to him, somehow letting him know I was safe and thanking him for the help. All this communication done silently through her car window. Years later I would tell my mom how much this adventure meant to me and how it changed me. She always told us we were strong and could do anything. My mother always thought If we believed we could do something it was her job as our mother, to let us go, give us encouragement and then stand back watching from the sidelines. Thanks Mom for this gift and for all the other times you encouraged me, watching from the sidelines. In honor of Peggy Masterson, my mom, 1934-2007 #empoweringwomen  #thankful 🙏 #badmoms  #chronicloveclub  #beyourself  #chronicpainwarrior 
I’m too tired for a big caption but here’s some really nice leaves I saw a while back.
Being in a wheelchair gives you a perspective that most people miss; most of the time it just means you’re eye level with everyone’s bum (and nose level too, which really sucks when you’re in a queue and someone ahead of you toots 😰) but in this case I got to see a view of the tree and its beautiful leaves that everyone else was walking past and missing.
I’ll be sad when the trees are bare of their lovely leaves but winter beckons and I do so love the cosiness of being tucked up warm inside and seeing a good hard frost on the bare twigs and branches 😊

#autumn #fall #autumnleaves #leaves #winter #perspective #wheelchair #wheelsfordoof #disability
I’m too tired for a big caption but here’s some really nice leaves I saw a while back. Being in a wheelchair gives you a perspective that most people miss; most of the time it just means you’re eye level with everyone’s bum (and nose level too, which really sucks when you’re in a queue and someone ahead of you toots 😰) but in this case I got to see a view of the tree and its beautiful leaves that everyone else was walking past and missing. I’ll be sad when the trees are bare of their lovely leaves but winter beckons and I do so love the cosiness of being tucked up warm inside and seeing a good hard frost on the bare twigs and branches 😊 #autumn  #fall  #autumnleaves  #leaves  #winter  #perspective  #wheelchair  #wheelsfordoof  #disability 
“Buddy the Elf, what’s your favorite color?” 💕❄️
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My #transformationtuesday means transforming into my Christmas state of mine because it’s my favorite time of the year! Bring on some Christmas cheer for all to hear! 🎄🎄🎄
“Buddy the Elf, what’s your favorite color?” 💕❄️ • • My #transformationtuesday  means transforming into my Christmas state of mine because it’s my favorite time of the year! Bring on some Christmas cheer for all to hear! 🎄🎄🎄
While it’s still #diabetesawarenessmonth, I decided to I’d do this #dearyoungert1dme challenge from @ehmichelle. I’d go all the way back to 1983 to have this conversation with my 6 year old self in the hospital the week I was diagnosed... Hey Robbie, so you’ve been a little sick the past few month and things are going to be different from now on. You really don’t k ow what living is yet because your only six years old. In a little bit, a guy in a white nurses uniform is going to come in that door and give you your first insulin shot. When it happens, go ahead and cry. It’s ok. Don’t be afraid to show your real feelings. Your going to have to take these shots for a long time. Don’t worry though, eventually technology is going to be awesome and make this so much easier. Just be patient. Six years from now you will be right back in this very room, just using the other bed, so the Dr can help get your numbers back in control. Be nice to your parents because they are your life support for the next 14 years. 
You are going to be one of the luckiest T1 kids ever because your going to have people around you all your life that want to understand this and they will do whatever they can to help you until you graduate from high school. Your life will be average to people on the outside, buts that is perfectly ok. Because it’s actually going to be pretty awesome. You get to eat in class, you’re going to be a pretty good athlete, and accomplish many things. When you get to college, you are going to be told by some girls that they won’t date you because of your diabetes....that’s jacked up, but the one won’t ever think twice about it. Trust me when I say that, because she’s going to decide she wants to marry you after you pass out in the bank on her. And remember to be nice to her. You’re going to be a jerk sometimes. Especially when you are stressed. She will still love you though. 
You don’t know it yet, but neither of you will be able to have kids, But God is going to make your family incredible by #adoption. It’s going to be #YUGE!(you’ll know why that’s so funny when you’re 40). Continued in comments.....
While it’s still #diabetesawarenessmonth , I decided to I’d do this #dearyoungert1dme  challenge from @ehmichelle. I’d go all the way back to 1983 to have this conversation with my 6 year old self in the hospital the week I was diagnosed... Hey Robbie, so you’ve been a little sick the past few month and things are going to be different from now on. You really don’t k ow what living is yet because your only six years old. In a little bit, a guy in a white nurses uniform is going to come in that door and give you your first insulin shot. When it happens, go ahead and cry. It’s ok. Don’t be afraid to show your real feelings. Your going to have to take these shots for a long time. Don’t worry though, eventually technology is going to be awesome and make this so much easier. Just be patient. Six years from now you will be right back in this very room, just using the other bed, so the Dr can help get your numbers back in control. Be nice to your parents because they are your life support for the next 14 years. You are going to be one of the luckiest T1 kids ever because your going to have people around you all your life that want to understand this and they will do whatever they can to help you until you graduate from high school. Your life will be average to people on the outside, buts that is perfectly ok. Because it’s actually going to be pretty awesome. You get to eat in class, you’re going to be a pretty good athlete, and accomplish many things. When you get to college, you are going to be told by some girls that they won’t date you because of your diabetes....that’s jacked up, but the one won’t ever think twice about it. Trust me when I say that, because she’s going to decide she wants to marry you after you pass out in the bank on her. And remember to be nice to her. You’re going to be a jerk sometimes. Especially when you are stressed. She will still love you though. You don’t know it yet, but neither of you will be able to have kids, But God is going to make your family incredible by #adoption . It’s going to be #YUGE !(you’ll know why that’s so funny when you’re 40). Continued in comments.....
Tonight I went to my house mates dads birthday. He’s such a sweet man. He has always helped me out when I’ve needed it. Lending me his ute to pick up cupboards, he let me store all my stuff in his shed when I came back to Bendigo. 🏡 🏠 
It was a great excuse to get dressed up and look nice. For once I didn’t wear the baggy shirt I’m wearing in this picture. I didn’t wear trackies or slippers it was a big win. 🥇🥇
I picked something safe off the menu that didn’t upset my stomach and I drank water to avoid any unnecessary bloating/uncomfortable feels. I managed to be out and at the table for 2 hours which is a huge achievement for me. Usually it’s 40 minutes or an hour if I’m lucky. ⌚️⏳
I’m very slowly adjusting my life to fit how I feel. It’s very hard to actually play out however when it works I’m on cloud nine ☁️ 9️⃣
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#makeupfreak #motd #makeuplover #orangelip #neonlip #longlashlove #makeupinspo #endometriosisawareness #endostrong #chronicpainwarrior #spooniesunite #polycysticovariansyndrome #cystersunited #cysterstrong #fightingdailypain #thespooniesisterhood #chronicloveclub #pelvicpain #painalways
Tonight I went to my house mates dads birthday. He’s such a sweet man. He has always helped me out when I’ve needed it. Lending me his ute to pick up cupboards, he let me store all my stuff in his shed when I came back to Bendigo. 🏡 🏠 It was a great excuse to get dressed up and look nice. For once I didn’t wear the baggy shirt I’m wearing in this picture. I didn’t wear trackies or slippers it was a big win. 🥇🥇 I picked something safe off the menu that didn’t upset my stomach and I drank water to avoid any unnecessary bloating/uncomfortable feels. I managed to be out and at the table for 2 hours which is a huge achievement for me. Usually it’s 40 minutes or an hour if I’m lucky. ⌚️⏳ I’m very slowly adjusting my life to fit how I feel. It’s very hard to actually play out however when it works I’m on cloud nine ☁️ 9️⃣ . . . . . . . . . . #makeupfreak  #motd  #makeuplover  #orangelip  #neonlip  #longlashlove  #makeupinspo  #endometriosisawareness  #endostrong  #chronicpainwarrior  #spooniesunite  #polycysticovariansyndrome  #cystersunited  #cysterstrong  #fightingdailypain  #thespooniesisterhood  #chronicloveclub  #pelvicpain  #painalways 
I met them 😱

This whole trip I have been hoping to see Jackie and Jaclyn and they came 😱😊😃😮 It was crazy to see them in person, but not only that they were the same off camera as on and so genuine. 
A few years ago I saw them off in the distance, but I actually met them today. They are so incredibly nice and funny and caring, that I urge anyone who loves Disney or just being happy to watch their YouTube channel because I am sure you will love them too. 
Now for the story from yesterday of meeting the girl with a chair like mine. 
Yesterday was Mickey and Minnie’s birthday so there was a birthday parade that was great. We pulled up to the handicapped seating area and saw a chair kind of like mine. 
Hers was the same model (Quantum edge 2.0) and had the same steaming thing, but had the ilevel (I might get that soon). She saw that mine was similar and we started chatting about them and how I liked mine since she just got hers 2 months ago. 
Short story long we both love them and have had great experiences driving them (I even told her about the running out of battery by that is not funny than anything). It was also great to meet someone with similar experiences to me (didn’t get into detail) but seemed a lot like me. Truthfully I just really liked talking in person with some one kind of like me and even more about Wheelie because I have not had a chance to share experiences with anyone before.
I met them 😱 This whole trip I have been hoping to see Jackie and Jaclyn and they came 😱😊😃😮 It was crazy to see them in person, but not only that they were the same off camera as on and so genuine. A few years ago I saw them off in the distance, but I actually met them today. They are so incredibly nice and funny and caring, that I urge anyone who loves Disney or just being happy to watch their YouTube channel because I am sure you will love them too. Now for the story from yesterday of meeting the girl with a chair like mine. Yesterday was Mickey and Minnie’s birthday so there was a birthday parade that was great. We pulled up to the handicapped seating area and saw a chair kind of like mine. Hers was the same model (Quantum edge 2.0) and had the same steaming thing, but had the ilevel (I might get that soon). She saw that mine was similar and we started chatting about them and how I liked mine since she just got hers 2 months ago. Short story long we both love them and have had great experiences driving them (I even told her about the running out of battery by that is not funny than anything). It was also great to meet someone with similar experiences to me (didn’t get into detail) but seemed a lot like me. Truthfully I just really liked talking in person with some one kind of like me and even more about Wheelie because I have not had a chance to share experiences with anyone before.
@chronically.keda says ‘my pain looks like being plastered to a spinning spikes target board with darts lit on fire being thrown at random places.’
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Submissions for this project are now closed but there are a lot more to come. Thank you all for your amazing submissions 🙏 *
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#pain #snapshotsofpain #mypainlookslike #fibromyalgia #chronicpain #chronicillness #invisibleillness #crps #cfs #analogcollage #collageaday #collageartist #collageart #instaart #artshare #customcollage #share #art #illustration #fibrowarrior #chronicloveclub #cutandpaste #earthquake #migraine #endometriosis #huffpostlifestyle #mypain #explainmypain
@chronically.keda says ‘my pain looks like being plastered to a spinning spikes target board with darts lit on fire being thrown at random places.’ * * * Submissions for this project are now closed but there are a lot more to come. Thank you all for your amazing submissions 🙏 * * * #pain  #snapshotsofpain  #mypainlookslike  #fibromyalgia  #chronicpain  #chronicillness  #invisibleillness  #crps  #cfs  #analogcollage  #collageaday  #collageartist  #collageart  #instaart  #artshare  #customcollage  #share  #art  #illustration  #fibrowarrior  #chronicloveclub  #cutandpaste  #earthquake  #migraine  #endometriosis  #huffpostlifestyle  #mypain  #explainmypain 
Got my temporary finger splints, finally!
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The hand therapist was great, and really took my whole health and lifestyle into perspective. Although I'm still awaiting for testing for Ehlers Danlos Syndrome, and he hadn't even heard of it, he took my quick lesson about it and was able to explain how some of my finger deformities fit into the picture.
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For now, we're starting with temporary plastic splints on the little fingers, which are my worst. If it's going well in two weeks, he'll make one for the ring finger shown and another for my right hand's middle finger. If all is good after 6 weeks, he'll link me in with someone to make permanent silver ring splints for all my fingers. He can't do anything about the twisting in of my finger, as he said that's linked to childhood development, but it shouldn't progress if my other deformities are taken care of.
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So I'm really happy to have finally got in. These temporary splints are hurting a little bit, but I think it's my hands trying to adjust to being used differently - when your fingers constantly hyperextend, you have to work out different ways to do things, so my hands haven't been used 'normally' in many years. Here's hoping they are tolerated well!

#chronicillness #chronicfatigue #chronicpain #connectivetissuedisorder #eds #ehlersdanlossyndrome #rheumatoidarthritis #rheumatoiddisease #swanneckdeformity #ringsplints #silverringsplints #fingersplints #handtherapy #occupationaltherapy #ot #disability #zebrastrong #chronicillnesswarrior #chronicloveclub #autoimmunedisorder #autoimmunedisease #autoimmune #hypermobility
Got my temporary finger splints, finally! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ The hand therapist was great, and really took my whole health and lifestyle into perspective. Although I'm still awaiting for testing for Ehlers Danlos Syndrome, and he hadn't even heard of it, he took my quick lesson about it and was able to explain how some of my finger deformities fit into the picture. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ For now, we're starting with temporary plastic splints on the little fingers, which are my worst. If it's going well in two weeks, he'll make one for the ring finger shown and another for my right hand's middle finger. If all is good after 6 weeks, he'll link me in with someone to make permanent silver ring splints for all my fingers. He can't do anything about the twisting in of my finger, as he said that's linked to childhood development, but it shouldn't progress if my other deformities are taken care of. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ So I'm really happy to have finally got in. These temporary splints are hurting a little bit, but I think it's my hands trying to adjust to being used differently - when your fingers constantly hyperextend, you have to work out different ways to do things, so my hands haven't been used 'normally' in many years. Here's hoping they are tolerated well! #chronicillness  #chronicfatigue  #chronicpain  #connectivetissuedisorder  #eds  #ehlersdanlossyndrome  #rheumatoidarthritis  #rheumatoiddisease  #swanneckdeformity  #ringsplints  #silverringsplints  #fingersplints  #handtherapy  #occupationaltherapy  #ot  #disability  #zebrastrong  #chronicillnesswarrior  #chronicloveclub  #autoimmunedisorder  #autoimmunedisease  #autoimmune  #hypermobility 
OOTD: Well it’s “fall” here in Florida, so that means short sleeves still! I miss my Virginia fall weather!! So I’m feeling fall festive in this mustard suede shirt from @altardstate !!! I’m also finding ways to camouflage my central line, because you know CF and transplant happens! *

OUTFIT DEETS:
🌻Jeans: Abercrombie & Fitch 🌻Shoes: Marc Fisher
🌻Jewelry: Kendra Scott, Spartina, and Luca & Danni
🌻Purse: Tori Burch *

MAKEUP:
🌻Eyes: SULTRY PALETTE BY Anastasia 🌻Foundation: Fenty Beauty (shade 190)
🌻Concealer: Tarte Shape Tape (shade fair)
🌻 Blush and Bronzer: Tarte Park Ave Princess
🌻 Lashes: Milk Kush Mascara & IT TightLine 🌻 Highlight: Jefree Star Cosmetics (shade SNOW GLOBE)
🌻 Lips: Charlotte Tilbury Lip Bath *

Happy Monday!!
Love and Blessings,
Amanda 🌻
OOTD: Well it’s “fall” here in Florida, so that means short sleeves still! I miss my Virginia fall weather!! So I’m feeling fall festive in this mustard suede shirt from @altardstate !!! I’m also finding ways to camouflage my central line, because you know CF and transplant happens! * OUTFIT DEETS: 🌻Jeans: Abercrombie & Fitch 🌻Shoes: Marc Fisher 🌻Jewelry: Kendra Scott, Spartina, and Luca & Danni 🌻Purse: Tori Burch * MAKEUP: 🌻Eyes: SULTRY PALETTE BY Anastasia 🌻Foundation: Fenty Beauty (shade 190) 🌻Concealer: Tarte Shape Tape (shade fair) 🌻 Blush and Bronzer: Tarte Park Ave Princess 🌻 Lashes: Milk Kush Mascara & IT TightLine 🌻 Highlight: Jefree Star Cosmetics (shade SNOW GLOBE) 🌻 Lips: Charlotte Tilbury Lip Bath * Happy Monday!! Love and Blessings, Amanda 🌻
If your heart may be hurting right now, remember where your help comes from. He PROMISES to heal the brokenhearted and that JOY comes in the morning. Just keep swimming, Warrior🏊🏾‍♀️. He has you. ✨Lord, I will lift my eyes to the hills
Knowing my help is coming from You. 
Your peace you give me in time of the storm.
You are the source of my strength.
You are the strength of my life. 
I lift my hands in Total Praise to You. Amen.✨ Please keep me in prayer tonight, y'all. I 💕 you to the🌙 and back! ~Lydia, #sicklecellwarriorprincess 🌱👑
If your heart may be hurting right now, remember where your help comes from. He PROMISES to heal the brokenhearted and that JOY comes in the morning. Just keep swimming, Warrior🏊🏾‍♀️. He has you. ✨Lord, I will lift my eyes to the hills Knowing my help is coming from You. Your peace you give me in time of the storm. You are the source of my strength. You are the strength of my life. I lift my hands in Total Praise to You. Amen.✨ Please keep me in prayer tonight, y'all. I 💕 you to the🌙 and back! ~Lydia, #sicklecellwarriorprincess  🌱👑
Pt 2/2 2017!!😊👊 This will have us caught up to 2018, and I'll start that in my next post.

So in January of 2017 I had a celiac plexus block scheduled (BEST DECISION I'VE EVER MADE) it numbed all of my digestive organs/abdomen for a few hours, and it was the best few hours I've ever had in a long time. Unfortunately it didn't last as long as they thought it would (a couple weeks-months) but that's okay because it at least gave me a minute to catch my breath and be able to walk. I even ate a few bites of food without feeling anything! About a week or so later (can't remember for sure) I went in to have an ERCP and sphincterotomy performed. It's a super specialized procedure to get a look inside your pancreas/liver and bile ducts. They weren't expecting to find anything because nothing ever showed up on any of my imaging but my sphincter was 3 times the size it was supposed to be and so tight that they weren't able to push the camera through so they had to cut it open to take a look inside. Unfortunately there was a small chance of having a pancreatitis attack from the procedure itself, and that's exactly what happened so I was admitted again for a few days. (Best stay I've ever had, and it healed up pretty good just couldn't notice right away) I was starting to come off of pain meds with the help of one of my doctors.
Didn't notice any change until the start of May when my pancreas and liver levels started to come down and I was able to keep down water and a few bites of food!

May 4th 2017 I was able to keep enough food and water down orally to take my tube out and come off of all pain meds! I was slowly working my body back up after being bedridden since September, and was able to walk at graduation towards the middle/end of May! I had help by some of my friends to get up/down the stairs of the stage but I did it without needing my wheelchair and it was truly inedible!💜 After that I still had to work my body/organs/stomach back up to tolerate the simple tasks that people take for granted, and it wasn't easy/quick in the slightest but I was able to get back to about where I was before the 8 month long attack began, and was no longer in the danger zone!🎉
Pt 2/2 2017!!😊👊 This will have us caught up to 2018, and I'll start that in my next post. So in January of 2017 I had a celiac plexus block scheduled (BEST DECISION I'VE EVER MADE) it numbed all of my digestive organs/abdomen for a few hours, and it was the best few hours I've ever had in a long time. Unfortunately it didn't last as long as they thought it would (a couple weeks-months) but that's okay because it at least gave me a minute to catch my breath and be able to walk. I even ate a few bites of food without feeling anything! About a week or so later (can't remember for sure) I went in to have an ERCP and sphincterotomy performed. It's a super specialized procedure to get a look inside your pancreas/liver and bile ducts. They weren't expecting to find anything because nothing ever showed up on any of my imaging but my sphincter was 3 times the size it was supposed to be and so tight that they weren't able to push the camera through so they had to cut it open to take a look inside. Unfortunately there was a small chance of having a pancreatitis attack from the procedure itself, and that's exactly what happened so I was admitted again for a few days. (Best stay I've ever had, and it healed up pretty good just couldn't notice right away) I was starting to come off of pain meds with the help of one of my doctors. Didn't notice any change until the start of May when my pancreas and liver levels started to come down and I was able to keep down water and a few bites of food! May 4th 2017 I was able to keep enough food and water down orally to take my tube out and come off of all pain meds! I was slowly working my body back up after being bedridden since September, and was able to walk at graduation towards the middle/end of May! I had help by some of my friends to get up/down the stairs of the stage but I did it without needing my wheelchair and it was truly inedible!💜 After that I still had to work my body/organs/stomach back up to tolerate the simple tasks that people take for granted, and it wasn't easy/quick in the slightest but I was able to get back to about where I was before the 8 month long attack began, and was no longer in the danger zone!🎉
Pt 1/2 (this post is by far the longest one I'll ever do and I promise I'm almost caught up to this year)

It took until the end of March 2016 (1 week before my 17th birthday) before it dawned on any of my doctors to put me on digestive enzymes to help break my food down and to absorb any of the nutrients. (It was a dietician who pointed out to one of my GI's that I wasn't producing enough enzymes due to the damage all of my pancreatitis attacks have caused on my pancreas.) It was the first time in years that I could eat without having severe pain, and was able to start gaining a little bit of weight!!🎉 We were hopeful that with these enzymes I'd never have a pancreatitis attack again because they made such a world of difference and I started doing so good on them! I didn't miss any school and was able to go out with friends and do "normal" teenager activities with only a few restrictions.

Unfortunately at the start of September 2016 I caught a chest cold from being exposed to other students at my school. That chest cold turned into the worst pancreatitis attack I've ever had (thus far). I was in and out of the hospital with having to stay for about 10 days at a time due to severe pain and nausea. 
October 16th 2016 I got an NJ tube placed inpatient in hopes that it would rest my pancreas/liver and my attack wouldn't last so long, and I'd be able to get nutrition because my pancreas was digesting my body instead of food because I was NPO for over a month at this point. I got released from the hospital and placed on home healthcare/hospice so I could have nurses come out to my house to help rather than staying in the hospital.
November 30th 2016 I took a turn for the worse due to being on the wrong pain medication and was admitted into the ICU at the local children's hospital (I was 17, would be 18 in April but "adult" hospitals didn't feel comfortable treating me due to my age and severity of issues) IT WAS THE WORST HOSPITALIZATION I'VE EVER HAD, and I thought that my body was going to give out on me at certain points. After a week stay I got to come back home on hospice, and left in tears because they made everything worse and didn't care.
Pt 1/2 (this post is by far the longest one I'll ever do and I promise I'm almost caught up to this year) It took until the end of March 2016 (1 week before my 17th birthday) before it dawned on any of my doctors to put me on digestive enzymes to help break my food down and to absorb any of the nutrients. (It was a dietician who pointed out to one of my GI's that I wasn't producing enough enzymes due to the damage all of my pancreatitis attacks have caused on my pancreas.) It was the first time in years that I could eat without having severe pain, and was able to start gaining a little bit of weight!!🎉 We were hopeful that with these enzymes I'd never have a pancreatitis attack again because they made such a world of difference and I started doing so good on them! I didn't miss any school and was able to go out with friends and do "normal" teenager activities with only a few restrictions. Unfortunately at the start of September 2016 I caught a chest cold from being exposed to other students at my school. That chest cold turned into the worst pancreatitis attack I've ever had (thus far). I was in and out of the hospital with having to stay for about 10 days at a time due to severe pain and nausea. October 16th 2016 I got an NJ tube placed inpatient in hopes that it would rest my pancreas/liver and my attack wouldn't last so long, and I'd be able to get nutrition because my pancreas was digesting my body instead of food because I was NPO for over a month at this point. I got released from the hospital and placed on home healthcare/hospice so I could have nurses come out to my house to help rather than staying in the hospital. November 30th 2016 I took a turn for the worse due to being on the wrong pain medication and was admitted into the ICU at the local children's hospital (I was 17, would be 18 in April but "adult" hospitals didn't feel comfortable treating me due to my age and severity of issues) IT WAS THE WORST HOSPITALIZATION I'VE EVER HAD, and I thought that my body was going to give out on me at certain points. After a week stay I got to come back home on hospice, and left in tears because they made everything worse and didn't care.
HISTAMINE • I saw my allergist today about my histamine issues. I have episodes of lots of facial flushing, my arms and thighs get super red and hot to the touch in response to high histamine foods and a couple other triggers. I’m on H1, H2 blockers and an antihistamine, which hasn’t been enough. He decided to put me on Xolair to see if that helps. I fell asleep after they gave me the injections because they had to monitor me after for an hour and a half. 😴 Today was a super high fatigue day just in general. I fell asleep at the doctor’s office and also napped for almost two hours when I got home. Hoping I sleep okay tonight.
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I also had an appointment with a new potential therapist which went really well. Although starting with someone new is frustrating, it was nice to get a fresh perspective on things. He already said something that made me look at an ongoing challenging issue through a different lens. Finally, my pain doctor switched me back from the pain patch to the oral meds I was on before while we try to win this approval for the dose increase. I can’t be in a ton of pain for weeks while we try to fight this.
HISTAMINE • I saw my allergist today about my histamine issues. I have episodes of lots of facial flushing, my arms and thighs get super red and hot to the touch in response to high histamine foods and a couple other triggers. I’m on H1, H2 blockers and an antihistamine, which hasn’t been enough. He decided to put me on Xolair to see if that helps. I fell asleep after they gave me the injections because they had to monitor me after for an hour and a half. 😴 Today was a super high fatigue day just in general. I fell asleep at the doctor’s office and also napped for almost two hours when I got home. Hoping I sleep okay tonight. - I also had an appointment with a new potential therapist which went really well. Although starting with someone new is frustrating, it was nice to get a fresh perspective on things. He already said something that made me look at an ongoing challenging issue through a different lens. Finally, my pain doctor switched me back from the pain patch to the oral meds I was on before while we try to win this approval for the dose increase. I can’t be in a ton of pain for weeks while we try to fight this.
tonight i had my first emgality injection!
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one of the great things that came from my neuro appointment was a real plan to manage my spinal headaches. i almost always have a migraine, due to my instability. finally, we’ve decided to try a once a month antibody injection.
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fingers crossed that emgality does the trick for these annoying neuro symptoms!
tonight i had my first emgality injection! ••• one of the great things that came from my neuro appointment was a real plan to manage my spinal headaches. i almost always have a migraine, due to my instability. finally, we’ve decided to try a once a month antibody injection. ••• fingers crossed that emgality does the trick for these annoying neuro symptoms!
Post first day of work feels. Tired AF .
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But oh so happy to be getting back in the swing of things and helping kids improve their motor skills! .
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#pediatricpt #dpt #ehlersdanlos #potsie #chronicfatigue #chronicpain #chronicwarrior #invisibleillnesswarrior #chronicloveclub #spooniesisterhood #spooniestrong
Midline 💉
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So today they decried to put a Midline into because my veins  are over getting poke and I now have phlebitis in my left are. (All do a post about that later.)
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So they’re using my midline to do IV fluids and to push my pain/other meds though. Also they’re going to use it to draw blood so I don’t need to get poked anymore. I still have my port and it’s still working but we’re using that just for my TPN.
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So the plan for tomorrow is to do a exploratory lap surgery because my stomach is still swollen and I still have fluid pockets in my abdomen and the drains aren’t helping or working as well as they should. So that’s the plan. Either me or my mom will updates you guys! I just want to say thank you so much for all your love and support! It truly means the world to me. I love you guys.❤️
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#ileostomy #ileostomyawareness #ostomy #ostomates #ostomate #ostomybag #ostomate #ostomywarrior #warrior #stoma #chronicillness #chronicpain #hiddenillness #invisvibleillness #girlwithguts #loveyourself #bodypositivity #positivevibes #countyourblessings  #nocolonstillrollin #ittakesguts #toddtheostomy #chronicallymotivated #coloplast #spoonie #loveyourstoma #chronicloveclub
Midline 💉 • So today they decried to put a Midline into because my veins are over getting poke and I now have phlebitis in my left are. (All do a post about that later.) • So they’re using my midline to do IV fluids and to push my pain/other meds though. Also they’re going to use it to draw blood so I don’t need to get poked anymore. I still have my port and it’s still working but we’re using that just for my TPN. • So the plan for tomorrow is to do a exploratory lap surgery because my stomach is still swollen and I still have fluid pockets in my abdomen and the drains aren’t helping or working as well as they should. So that’s the plan. Either me or my mom will updates you guys! I just want to say thank you so much for all your love and support! It truly means the world to me. I love you guys.❤️ ••• #ileostomy  #ileostomyawareness  #ostomy  #ostomates  #ostomate  #ostomybag  #ostomate  #ostomywarrior  #warrior  #stoma  #chronicillness  #chronicpain  #hiddenillness  #invisvibleillness  #girlwithguts  #loveyourself  #bodypositivity  #positivevibes  #countyourblessings  #nocolonstillrollin  #ittakesguts  #toddtheostomy  #chronicallymotivated  #coloplast  #spoonie  #loveyourstoma  #chronicloveclub 
It’s the little things.❤️
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Guys today my cousin surprised me at the hospital with some goodies and this amazing, super warm, cute, and oh so fuzzy blanket!! ( can you tell I’m really excited about it!!🤣🥰) thank you again @ceceliamcleod_ ❤️ I love you!
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Anyway she’s honestly the best and I’m so lucky to have her in my life. And this gift just made my day.
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I hope you guys are having a great night and are feeling amazing. If not just hang in there we got this. Also I’m going to do a update list and let you guys know what’s going on and what’s the plan for tomorrow.❤️
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#familia #family #carepackage #spoonie #chronicloveclub
It’s the little things.❤️ • Guys today my cousin surprised me at the hospital with some goodies and this amazing, super warm, cute, and oh so fuzzy blanket!! ( can you tell I’m really excited about it!!🤣🥰) thank you again @ceceliamcleod_ ❤️ I love you! • Anyway she’s honestly the best and I’m so lucky to have her in my life. And this gift just made my day. • I hope you guys are having a great night and are feeling amazing. If not just hang in there we got this. Also I’m going to do a update list and let you guys know what’s going on and what’s the plan for tomorrow.❤️ ••• #familia  #family  #carepackage  #spoonie  #chronicloveclub 
I received my ordered prize from @realgoodfoods and @diabetesstrong_ig giveaway today! I ordered a case of pizza and t-shirt. Thanks to both of you. 
Now, this is the 4th giveaway I have won in the last 2 months. So keep tagging me, I love winning. But my kids keep asking when I’m going to buy a lottery ticket. 🤔. And, how do I get rid of the dry ice???
I received my ordered prize from @realgoodfoods and @diabetesstrong_ig giveaway today! I ordered a case of pizza and t-shirt. Thanks to both of you. Now, this is the 4th giveaway I have won in the last 2 months. So keep tagging me, I love winning. But my kids keep asking when I’m going to buy a lottery ticket. 🤔. And, how do I get rid of the dry ice???
CLC MEMBER FEATURE: Hi! I am Kayla. I am 24 and am blessed with two amazing parents and two dogs who help me function. Born in beautiful Colorado but live in Big Texas! I am a writer and educator of chronic illness.
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I was born with chronic acid reflux and gastric issues. Had surgery to fix those around 8-9 grade. The doctors removed part of my stomach, esophagus, and gallbladder. Which caused me to have EOE (narrowing of my esophagus). I got rear ended in 2015 going to my job before college and my chiari malformation fell further down during and caused constricted spinal fluid and damaged my nerves. Also gave me intractable migraine with aura and a type of seizures called PNES.
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I had my brain surgery back in February to see if it would help release my spinal fluid and relieve some of my symptoms. It’s been rough recovering for sure. After my brain surgery my other illnesses started acting out worse. So on top of healing i have to deal with my other illnesses.
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Having multiple illnesses is no walk in the park. But it has given me so many lessons here’s just a few.
-have faith above all
-always be thankful of your life. Live fully alive. You never know when you your world will change forever...
-be compassionate and understanding of people, lift them up. Be a light in the darkness, but be careful not to cast shadows.
-self love and care are key ingredients to survival.
-listen to your body and fight for it.
-adapt and grow where you are planted.
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Your illness is apart of you, but does not define you. Life is a beautiful paradox of peace and war. You will have trials and darkness but you will also have light and love. You are a warrior with with a soul on fire for life. Keep fight you are not alone not invisible-KDP
#chronicloveclub
CLC MEMBER FEATURE: Hi! I am Kayla. I am 24 and am blessed with two amazing parents and two dogs who help me function. Born in beautiful Colorado but live in Big Texas! I am a writer and educator of chronic illness. • I was born with chronic acid reflux and gastric issues. Had surgery to fix those around 8-9 grade. The doctors removed part of my stomach, esophagus, and gallbladder. Which caused me to have EOE (narrowing of my esophagus). I got rear ended in 2015 going to my job before college and my chiari malformation fell further down during and caused constricted spinal fluid and damaged my nerves. Also gave me intractable migraine with aura and a type of seizures called PNES. • I had my brain surgery back in February to see if it would help release my spinal fluid and relieve some of my symptoms. It’s been rough recovering for sure. After my brain surgery my other illnesses started acting out worse. So on top of healing i have to deal with my other illnesses. • Having multiple illnesses is no walk in the park. But it has given me so many lessons here’s just a few. -have faith above all -always be thankful of your life. Live fully alive. You never know when you your world will change forever... -be compassionate and understanding of people, lift them up. Be a light in the darkness, but be careful not to cast shadows. -self love and care are key ingredients to survival. -listen to your body and fight for it. -adapt and grow where you are planted. • Your illness is apart of you, but does not define you. Life is a beautiful paradox of peace and war. You will have trials and darkness but you will also have light and love. You are a warrior with with a soul on fire for life. Keep fight you are not alone not invisible-KDP #chronicloveclub 
Unfortunately, because of my seizures I’m typically stuck on the couch or my bed all day. It’s been a really big bummer and most of the time I’m asleep because my seizures wear me out completely. So today, I am so thankful for my sweet neighbor who took time out of her busy life to sew me this denim quilt. It was one of the most thoughtful gifts I have ever received!! Also, I’m grateful for this really soft pillow case and wave hat someone donated and gave me during my stay at the U of I in the peds neuro floor. Feeling so thankful!! •
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#lymedisease #lymediseaseawareness #lyme #lymedontkillmyvibe #lymewarrior #lymediet #lymelife #neurologicallyme #lymesucks #lymetreatment #chroniclyme #lymediseasesucks #lymediet #livlivingwithlyme #chronicillness #invisableillness #chronicpain #chronicallyfabulous #chronicloveclub #seizures #passingout #spoonie #seizure #spooniewarrior #spoonielife #spooniesisterhood #cfs #chronicfatiguesyndrome #chronicfatiguewarrior #fibromyalgia #mybodyhurts
Unfortunately, because of my seizures I’m typically stuck on the couch or my bed all day. It’s been a really big bummer and most of the time I’m asleep because my seizures wear me out completely. So today, I am so thankful for my sweet neighbor who took time out of her busy life to sew me this denim quilt. It was one of the most thoughtful gifts I have ever received!! Also, I’m grateful for this really soft pillow case and wave hat someone donated and gave me during my stay at the U of I in the peds neuro floor. Feeling so thankful!! • • • • • • • #lymedisease  #lymediseaseawareness  #lyme  #lymedontkillmyvibe  #lymewarrior  #lymediet  #lymelife  #neurologicallyme  #lymesucks  #lymetreatment  #chroniclyme  #lymediseasesucks  #lymediet  #livlivingwithlyme  #chronicillness  #invisableillness  #chronicpain  #chronicallyfabulous  #chronicloveclub  #seizures  #passingout  #spoonie  #seizure  #spooniewarrior  #spoonielife  #spooniesisterhood  #cfs  #chronicfatiguesyndrome  #chronicfatiguewarrior  #fibromyalgia  #mybodyhurts 
Introducing the 🍭 guild:: So much fun at @thecandytopia yesterday! Gotta love all the candy and fun activities and of course the Instagram game was REAL! 🍭🍭🍭🍭
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#TiffGotLungs #lungs4tiff #cysticfibrosis #cfawareness #curecf #doublelungtransplant #cfirl #saltycysters #fibro #love #laugh #hope #donatelife #organdonation #dream #donor #65roses #recycleyourself #taylorswift #thankful #justbreathe #spoonie #chronicloveclub #glamcysters #Candytopia #sanfrancisco #lollipop #unicorn #candy
Introducing the 🍭 guild:: So much fun at @thecandytopia yesterday! Gotta love all the candy and fun activities and of course the Instagram game was REAL! 🍭🍭🍭🍭 — • • • #TiffGotLungs  #lungs4tiff  #cysticfibrosis  #cfawareness  #curecf  #doublelungtransplant  #cfirl  #saltycysters  #fibro  #love  #laugh  #hope  #donatelife  #organdonation  #dream  #donor  #65roses  #recycleyourself  #taylorswift  #thankful  #justbreathe  #spoonie  #chronicloveclub  #glamcysters  #Candytopia  #sanfrancisco  #lollipop  #unicorn  #candy 
Thank you all for your support it means more than you know! Feeling better but back on higher steroids...you do what you gotta do!! ❤️ sending all my love to everyone!! ________________________________________________________#believeinyourself#justlive#mitochondrialdiease#ehlersdanlossyndrome#jtube#gtube#port#chronicillnesswarrior#mentalhealthmatters#model#chronicloveclub#modeling#headshot#photography#blonde#blueyes#fashion#wlyg#followyourdreams#love#fun#travel#studiolife#nyclife#indiepop#pop#vocalist#pianist#singersongwriter
Thank you all for your support it means more than you know! Feeling better but back on higher steroids...you do what you gotta do!! ❤️ sending all my love to everyone!! ________________________________________________________#believeinyourself #justlive #mitochondrialdiease #ehlersdanlossyndrome #jtube #gtube #port #chronicillnesswarrior #mentalhealthmatters #model #chronicloveclub #modeling #headshot #photography #blonde #blueyes #fashion #wlyg #followyourdreams #love #fun #travel #studiolife #nyclife #indiepop #pop #vocalist #pianist #singersongwriter 
Whether you choose to share your struggles or if you choose to keep them to yourself - keep going, keep fighting, you’ve got this, and I’m so damn proud of you. #dontletthedarknesswin
Whether you choose to share your struggles or if you choose to keep them to yourself - keep going, keep fighting, you’ve got this, and I’m so damn proud of you. #dontletthedarknesswin 
This California trip hasn't gone exactly as planned. Meetings, races, etc, postponed, cancelled. The wildfires & loss of life ( @runningdenverco @halsportsevents Mike- Denver Running Community) - I'm grieving with you this week; puts things in perspective! Be sure to give thanks & say what you mean to all you love & grace; if just for a moment! You don't get a second chance for a last race, photo, last memory, greeting!
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Forever Thankful:
* 3 returns to life! 🙏
* For all Help, Community, Race Directors, Race Staff, Medical, First Responders, Guides, Sponsors, Vendors & Volunteers for 138 Races in 2017; 122 Races in 2018!
* 100 consecutive weeks of races (Jan 2017-Nov 2018 ended 11/18/18 no races in Bay Area this weekend) that spanned 2 Coastal Journeys & involved many wonderful organizations! 💙✌
* Opportunities raising awareness for Diabetes, Migraines & Pancreatic Cancer!
* Spending time with my mom, brother this trip.
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⭐ 📷 of how I channeled my frustration of seeing 100 weeks races disappear & prepare "Chicken For Days". Whole Chicken basted with Plum Sauce, Thyme, Sesame Seed, Black Pepper, Stuffed with Yellow & White Onions, Star Aniseed & Yams or Potatoes on side. Bake in Oven for 90 mins at 360 degrees. Prep with love, enjoy aroma, simple, budget friendly & carb friendly!
<🙏Please visit link, sign e-greeting & help set a 🌎 Record for Diabetes Awareness!>
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@beyondtype1
@beyondtype1daily
@c3fit_usa
@racedots
@achillessfbayarea
@jdrf_rockymtn
@runningterritory
@typeonerun
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#clearingmymind
#roastchicken
#bayareafood
#runstreak
#100weeks
#DiabetesAwareness
#dexcomwarrior
#runlove
#runyourworld
#sflife
#distancerunner
#MigraneAwareness
#AsianSensation
#RunCheweyRun 
#chronicloveclub
#runners_of_Insta
#runspiration
#spooniewarrior
#c3fit_usa
#GoAchilles
#JDRF
#marathoner
#ThanksEveryone
#beyondtype1
#Diabadass
#ColoradoRunner
#runningterritory
#foodforthoughts
#Diabeticrunner
#xtremerunnerslife
This California trip hasn't gone exactly as planned. Meetings, races, etc, postponed, cancelled. The wildfires & loss of life ( @runningdenverco @halsportsevents Mike- Denver Running Community) - I'm grieving with you this week; puts things in perspective! Be sure to give thanks & say what you mean to all you love & grace; if just for a moment! You don't get a second chance for a last race, photo, last memory, greeting! . . Forever Thankful: * 3 returns to life! 🙏 * For all Help, Community, Race Directors, Race Staff, Medical, First Responders, Guides, Sponsors, Vendors & Volunteers for 138 Races in 2017; 122 Races in 2018! * 100 consecutive weeks of races (Jan 2017-Nov 2018 ended 11/18/18 no races in Bay Area this weekend) that spanned 2 Coastal Journeys & involved many wonderful organizations! 💙✌ * Opportunities raising awareness for Diabetes, Migraines & Pancreatic Cancer! * Spending time with my mom, brother this trip. . . ⭐ 📷 of how I channeled my frustration of seeing 100 weeks races disappear & prepare "Chicken For Days". Whole Chicken basted with Plum Sauce, Thyme, Sesame Seed, Black Pepper, Stuffed with Yellow & White Onions, Star Aniseed & Yams or Potatoes on side. Bake in Oven for 90 mins at 360 degrees. Prep with love, enjoy aroma, simple, budget friendly & carb friendly! <🙏Please visit link, sign e-greeting & help set a 🌎 Record for Diabetes Awareness!> ----------------------. . . . @beyondtype1 @beyondtype1daily @c3fit_usa @racedots @achillessfbayarea @jdrf_rockymtn @runningterritory @typeonerun . . . . . #clearingmymind  #roastchicken  #bayareafood  #runstreak  #100weeks  #DiabetesAwareness  #dexcomwarrior  #runlove  #runyourworld  #sflife  #distancerunner  #MigraneAwareness  #AsianSensation  #RunCheweyRun  #chronicloveclub  #runners_of_Insta  #runspiration  #spooniewarrior  #c3fit_usa  #GoAchilles  #JDRF  #marathoner  #ThanksEveryone  #beyondtype1  #Diabadass  #ColoradoRunner  #runningterritory  #foodforthoughts  #Diabeticrunner  #xtremerunnerslife 
So moved after seeing this incredible performance and human on the weekend 💯😍🔥🎤🎼 There is generally so much behind things like this; spent the whole way home in pain but no regrets🙏🏼 #samsmith #samsmithconcert #qudosbankarena #livemusic #thrillofitalltour #australia #visitnsw #gig #chronicloveclub #invisableillbess #cfs #instagood #photooftheday #vscocam
I left the apartment for the first time since Thursday! 🎉 I'm not feeling any better, but the sunny sky was drawing me outdoors. 🌤️ So I forced myself to get dressed and get OUT. I went down the block to Starbucks, got a London Fog, and came home. A short, but lovely excursion. Felt so nice to get fresh air 💙 I'm proud of myself for doing that. What's a good moment you had today??
I left the apartment for the first time since Thursday! 🎉 I'm not feeling any better, but the sunny sky was drawing me outdoors. 🌤️ So I forced myself to get dressed and get OUT. I went down the block to Starbucks, got a London Fog, and came home. A short, but lovely excursion. Felt so nice to get fresh air 💙 I'm proud of myself for doing that. What's a good moment you had today??
SWIPE : Let's talk about bullet journalling.
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I have my bullet journal for almost a year now. In January this year I decided to give it a try.
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I keep it simple, only my month covers can be a little more creative as you can see. In my opinion a bullet journal should make your life easier not more chaotic ;)
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I work with a monthly overview and weekly's. I also have a page where I write down which books I've read etc.
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SPOONIE TIP: make a page where you can write down which doctor you saw when, how you felt about the appointment, which important things were said and when you see that doctor again. It helped me so much to proces all the appointments.
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I love to write down little to-do's for the day. It makes me feel proud when I can cross them out. One thing I had to learn: try not to write down too many tasks it can feel overwhelming and you can overdo it (what happened to me this year).
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Do you have a bullet journal or do you work with an agenda? What do you think of this system?
SWIPE : Let's talk about bullet journalling. . I have my bullet journal for almost a year now. In January this year I decided to give it a try. . I keep it simple, only my month covers can be a little more creative as you can see. In my opinion a bullet journal should make your life easier not more chaotic ;) . I work with a monthly overview and weekly's. I also have a page where I write down which books I've read etc. . SPOONIE TIP: make a page where you can write down which doctor you saw when, how you felt about the appointment, which important things were said and when you see that doctor again. It helped me so much to proces all the appointments. . I love to write down little to-do's for the day. It makes me feel proud when I can cross them out. One thing I had to learn: try not to write down too many tasks it can feel overwhelming and you can overdo it (what happened to me this year). . Do you have a bullet journal or do you work with an agenda? What do you think of this system?
Logan the rein-dog wants to remind everyone that it’s the most wonderful time of the year! 🎄❤️🎄
Logan the rein-dog wants to remind everyone that it’s the most wonderful time of the year! 🎄❤️🎄
Yep it's my feet. As part of #diabetesawarenessmonth  and to #makediabetesvisible I want to talk about my feet and the fears I have associated with hurting my feet. Right now I have a small cut on my right big toe. I attend to it carefully, keeping it covered and disinfecting it. I have mild neuropathy so sometimes I can't feel my feet like I used to. I worry that at some point if I am not careful I will get a foot ulcer or lose a toe. As a mover and someone who relies on my feet that scares me. I try not to think about it.
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To help me become more sensitive I work my feet in yoga poses. I ground down through the soles of my feet and make sure to spread my toes. I curl and uncurl my toes. I bring my weight to the outer heel first then the big toe mound than the little toe mound and the inner heel. I try to remember this formula in each and every pose.
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#diabetesfeet 
#diabetes #diabetic #typeonediabetic #typeonediabetes #diatribe  #diabetichealth  #type1 #type1diabetic #diabetics #diabeetus #diabeticgirl #diabeticfitness #diabeticliving #diabeticlife #diabetessupport #yoga #yogi #yogapose #mindbodygram #mbgram #doc #iamwellandgood #selfloveclub #chronicloveclub #healthylifestyle #yogafordiabetes #bodypositivity
Yep it's my feet. As part of #diabetesawarenessmonth  and to #makediabetesvisible  I want to talk about my feet and the fears I have associated with hurting my feet. Right now I have a small cut on my right big toe. I attend to it carefully, keeping it covered and disinfecting it. I have mild neuropathy so sometimes I can't feel my feet like I used to. I worry that at some point if I am not careful I will get a foot ulcer or lose a toe. As a mover and someone who relies on my feet that scares me. I try not to think about it. . To help me become more sensitive I work my feet in yoga poses. I ground down through the soles of my feet and make sure to spread my toes. I curl and uncurl my toes. I bring my weight to the outer heel first then the big toe mound than the little toe mound and the inner heel. I try to remember this formula in each and every pose. . #diabetesfeet  #diabetes  #diabetic  #typeonediabetic  #typeonediabetes  #diatribe  #diabetichealth  #type1  #type1diabetic  #diabetics  #diabeetus  #diabeticgirl  #diabeticfitness  #diabeticliving  #diabeticlife  #diabetessupport  #yoga  #yogi  #yogapose  #mindbodygram  #mbgram  #doc  #iamwellandgood  #selfloveclub  #chronicloveclub  #healthylifestyle  #yogafordiabetes  #bodypositivity 
Seriously. CBD is life. I kid you not since I started taking it daily, my entire life has changed. My moods are stable. My gut feels great. My chronic pain is at bay. CBD is one of the many supplements I take to manage my #endometriosis and I am so happy that it is accessible through a variety of forms!
Seriously. CBD is life. I kid you not since I started taking it daily, my entire life has changed. My moods are stable. My gut feels great. My chronic pain is at bay. CBD is one of the many supplements I take to manage my #endometriosis  and I am so happy that it is accessible through a variety of forms!
😝Well, that's Monday over at least!!
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Instagram: @thegrumblinggut
Facebook.com/thegrumblinggut 
Twitter.com/thegrumblinggut 
YouTube.com/thegrumblinggut 
www.thegrumblinggut.com
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#thegrumblinggut #beatthestigma #crohnsdisease #crohnsfighter #invisibleillness #chronicloveclub #crohnsandcolitisuk #crohnswarrior #work #monday #motivation #radiography #radiographer #relax #workhard #selfies #mirrorselfie #tired #hometime #crohnsawareness #happy #medicine #ibdawareness #crohnie #crohnsawareness #strongertogether #ibd #ibdsuperheroes #crohnslife #chronicillness #blogger
😝Well, that's Monday over at least!! _______________ Instagram: @thegrumblinggut Facebook.com/thegrumblinggut Twitter.com/thegrumblinggut YouTube.com/thegrumblinggut www.thegrumblinggut.com 🔹 #thegrumblinggut  #beatthestigma  #crohnsdisease  #crohnsfighter  #invisibleillness  #chronicloveclub  #crohnsandcolitisuk  #crohnswarrior  #work  #monday  #motivation  #radiography  #radiographer  #relax  #workhard  #selfies  #mirrorselfie  #tired  #hometime  #crohnsawareness  #happy  #medicine  #ibdawareness  #crohnie  #crohnsawareness  #strongertogether  #ibd  #ibdsuperheroes  #crohnslife  #chronicillness  #blogger 
i'm doing so good! i had therapy today and it totally transformed my point of view 🦋
song of the day: this is home - cavetown
tags:
#ee #eds #eosinophilicesophagitis #allergies #depression #therapy #anxiety #ednos #head #migraine #invisibleillness #invisible #chronicillness #chronicloveclub #spooniesisterhood #spoon #update #pain #november #warrior #happy #excited #music
Dear “I’ve been trying to lose weight literally my whole life”, I’m gonna be a smart ass here:

Have you ever made it a priority to wake up excited for the day? Or how about having healthy relationships that make you feel loved and happy with zero guilt? Or how about that reoccurring to do list you blurt things out from every day but never complete or get outta your brain? Yanno... how many times a day do you say “ugh I have to do ___. Add it to the list!”...yet you’re too exhausted even though the list builds and builds? When was the last time you didn’t ALWAYS feel behind the 8 ball?
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When was the last time you prioritized self care? Date night? When’s the last time you felt energetic without a metric ton of coffee? When’s the last time you DIDNT bloat like a damn blimp just LOOKING at food? When’s the last time you didn’t feel guilty after eating? When’s the last time you felt clear at work and still productive when you got home? Are you excited by the meals you cook, especially because they don’t take much time to make? How many times do you miss a meal prep Sunday and beat yourself up? When’s the last time you actually WANTED to go out but felt too shitty to leave your couch? When was the last time you felt genuinely proud of how healthy and happy you are?
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Lots of questions. But that’s because I’m proving a point here:
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WHY IS IT THE ONLY RESULT WE CHASE IS A NUMBER ON A SCALE ? 🤷🏻‍♀️🤦🏻‍♀️
Dear “I’ve been trying to lose weight literally my whole life”, I’m gonna be a smart ass here: Have you ever made it a priority to wake up excited for the day? Or how about having healthy relationships that make you feel loved and happy with zero guilt? Or how about that reoccurring to do list you blurt things out from every day but never complete or get outta your brain? Yanno... how many times a day do you say “ugh I have to do ___. Add it to the list!”...yet you’re too exhausted even though the list builds and builds? When was the last time you didn’t ALWAYS feel behind the 8 ball? . When was the last time you prioritized self care? Date night? When’s the last time you felt energetic without a metric ton of coffee? When’s the last time you DIDNT bloat like a damn blimp just LOOKING at food? When’s the last time you didn’t feel guilty after eating? When’s the last time you felt clear at work and still productive when you got home? Are you excited by the meals you cook, especially because they don’t take much time to make? How many times do you miss a meal prep Sunday and beat yourself up? When’s the last time you actually WANTED to go out but felt too shitty to leave your couch? When was the last time you felt genuinely proud of how healthy and happy you are? . Lots of questions. But that’s because I’m proving a point here: . WHY IS IT THE ONLY RESULT WE CHASE IS A NUMBER ON A SCALE ? 🤷🏻‍♀️🤦🏻‍♀️
A Week of Thankful -
I’m thankful that I’ve finally found the courage to be myself after all these years.
“ Imperfection is beauty, madness is genius and it’s better to be absolutely ridiculous than absolutely boring.”
– Marilyn Monroe #artistsoninstagram #chronicpainwarrior #arthritis #chronicloveclub #beyourself #crazylady
everyone’s favorite physical therapist tech and physical therapy patient 😂
everyone’s favorite physical therapist tech and physical therapy patient 😂
Look hard, there’s something behind me!! We made it to Florida a few days ago & it’s surprisingly chilly (yay!). My family is joining us this week to celebrate thanksgiving together here 💚 #dolphinsarefollowingus #saltlife #wegotdys
Look hard, there’s something behind me!! We made it to Florida a few days ago & it’s surprisingly chilly (yay!). My family is joining us this week to celebrate thanksgiving together here 💚 #dolphinsarefollowingus  #saltlife  #wegotdys 
Live your truth. Express your love. Share your enthusiasm. Take action toward your dreams. Walk your talk. Dance and sing to your music. Embrace your blessings. Make today worth remembering. ⭐️
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This week, live your life for you and not for other people. No matter what you do or say, there are people out there that are going to judge you. Ignore them. This is your life. You got this! Happy Monday! 💁🏼‍♀️💛
Live your truth. Express your love. Share your enthusiasm. Take action toward your dreams. Walk your talk. Dance and sing to your music. Embrace your blessings. Make today worth remembering. ⭐️ • This week, live your life for you and not for other people. No matter what you do or say, there are people out there that are going to judge you. Ignore them. This is your life. You got this! Happy Monday! 💁🏼‍♀️💛
There’s an alien in my stomach 👽 👾 
He’s not very nice. He stabs me every day. Sometimes for fun he twists the knife. He’s always doing backflips in my stomach causing almost crippling anxiety. He gets down near my bladder and pushes on it. Sometimes I have to pee like 8 times a day and then the next day I’m normal again. The alien pushes around my Fallopian tubes, gets all up in my uterus and grazes it. 😰🤬😤😭
I’m pretty sure today I had two cysts burst on the same side. I was in a 12/10 pain for like a minute or two. Two massive cramps which made me scream, whole body pain and shock afterwards. Now my stomach is super lop sided, bloated, hard and painful. 😱 💀☠️
It’s big and round and it’s itchy af #passthemoisturiser 
But I don’t look sick..... .
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#butyoudontlooksick #highfunctioninganxiety #chronicpainwarrior #polycysticovariansyndrome #pcosawareness #chronicfatigue #dailypain #chronicpain #thespooniesisterhood #spooniesunite #cystersunited #poppopbangbang #bloat #pain #endosisterhood #endosistersunite #chronicloveclub #spoonieproblems #sickchickpics
There’s an alien in my stomach 👽 👾 He’s not very nice. He stabs me every day. Sometimes for fun he twists the knife. He’s always doing backflips in my stomach causing almost crippling anxiety. He gets down near my bladder and pushes on it. Sometimes I have to pee like 8 times a day and then the next day I’m normal again. The alien pushes around my Fallopian tubes, gets all up in my uterus and grazes it. 😰🤬😤😭 I’m pretty sure today I had two cysts burst on the same side. I was in a 12/10 pain for like a minute or two. Two massive cramps which made me scream, whole body pain and shock afterwards. Now my stomach is super lop sided, bloated, hard and painful. 😱 💀☠️ It’s big and round and it’s itchy af #passthemoisturiser  But I don’t look sick..... . . . . . . . . . . #butyoudontlooksick  #highfunctioninganxiety  #chronicpainwarrior  #polycysticovariansyndrome  #pcosawareness  #chronicfatigue  #dailypain  #chronicpain  #thespooniesisterhood  #spooniesunite  #cystersunited  #poppopbangbang  #bloat  #pain  #endosisterhood  #endosistersunite  #chronicloveclub  #spoonieproblems  #sickchickpics 
While it’s wonderfully warm weather in #Australia right now☀️🏖 parts of me still wishes I was back on top of the world in the jaw-dropping landscape that is #Grindelwald in the #SwissAlps! 🇨🇭🌄✨.
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As a #spoonie who suffers from severe joint pain & frequently ‘gets so cold it literally hurts’ in typical #Melbourne weather, I’m so proud of myself for being able to muster through & not let the amount of #pain I was in distract from the beauty that is #Switzerland.
While it’s wonderfully warm weather in #Australia  right now☀️🏖 parts of me still wishes I was back on top of the world in the jaw-dropping landscape that is #Grindelwald  in the #SwissAlps ! 🇨🇭🌄✨. . As a #spoonie  who suffers from severe joint pain & frequently ‘gets so cold it literally hurts’ in typical #Melbourne  weather, I’m so proud of myself for being able to muster through & not let the amount of #pain  I was in distract from the beauty that is #Switzerland .
Gingerbread goals 😉

Today started out not so great and has ended fantastic. 
Woke up this morning at 2 and have not been asleep since. My body would just not sleep and we even went back this afternoon to take a nap and I just laid there. 
Anyway, my uncle came and joined us for lunch and then Mickeys birthday celebration parade. 
And this evening my aunt joined us and we had an amazing time. Hopefully she will be able to join us again after work tomorrow. 
Unfortunately I think Indiana Jones has become to shaky for me. We went on it this evening and my vision went weird. But we went on it this morning and it was fine, but it did keep stopping so our car did not get shook. 
Luckily though pirates of the Caribbean (my favorite) and cars racers (my other favorite) are still a good to go for me. And of course haunted mansion and Ariel. 
More good news is that my favorite bus driver is here again. 
And even better I might get to meet some of my favorite youtubers tomorrow because they might come to the park. (Along with some friends from where we live, but we don’t see them other than when we are at Disneyland- I know why???)
Also met a girl with a similar wheelchair as me- should I share the story or no?
Gingerbread goals 😉 Today started out not so great and has ended fantastic. Woke up this morning at 2 and have not been asleep since. My body would just not sleep and we even went back this afternoon to take a nap and I just laid there. Anyway, my uncle came and joined us for lunch and then Mickeys birthday celebration parade. And this evening my aunt joined us and we had an amazing time. Hopefully she will be able to join us again after work tomorrow. Unfortunately I think Indiana Jones has become to shaky for me. We went on it this evening and my vision went weird. But we went on it this morning and it was fine, but it did keep stopping so our car did not get shook. Luckily though pirates of the Caribbean (my favorite) and cars racers (my other favorite) are still a good to go for me. And of course haunted mansion and Ariel. More good news is that my favorite bus driver is here again. And even better I might get to meet some of my favorite youtubers tomorrow because they might come to the park. (Along with some friends from where we live, but we don’t see them other than when we are at Disneyland- I know why???) Also met a girl with a similar wheelchair as me- should I share the story or no?
🍨EATING WITH AN ILEOSTOMY
🔹
🍕You should be able to eat a normal, healthy diet. A small number of people may find it hard to digest foods containing fibre. If you are having problems, you could try adding fibre to your diet gradually, starting with cooked fruit, like stewed apple.
🔹
🍣You may want to avoid small, hard foods like sweetcorn and nuts. If you get a blockage, you may get pain in your abdomen, you may feel sick or bloated and your stoma may stop working.
🔹
🍹You will need to make sure you are drinking enough fluids to avoid dehydration. This is particularly important in hot weather or when you are doing a lot of physical activity.
🔹
🍦You may sometimes get an increased output from your stoma, if you have a stomach bug. You can replace the lost fluid by drinking as normal.
🔹
🍪Eating salty foods will replace the lost salts. You may want to try rehydration drinks, which you can buy from the pharmacy or supermarket.
🔹
🍛Taking antibiotics and eating spicy food may also increase the output from your stoma. If you have increased output, try to avoid foods and drinks that can make the bowel more active, like fried foods, caffeine and alcohol.
🔹
☕It is important to tell your stoma nurse if you have ongoing problems with increased output and you feel thirsty, faint or weak, or if your urine is a dark yellow colour.
🔹
🍔You may have a stoma that produces a higher than normal output, which can cause dehydration. The stoma nurse or a dietitian can give you advice on your diet and medicines.
🔹
🔎For more information visit: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/living-with-a-stoma
_______________
Instagram: @thegrumblinggut 
Facebook.com/thegrumblinggut 
Twitter.com/thegrumblinggut 
YouTube.com/thegrumblinggut 
www.thegrumblinggut.com
🔹
#thegrumblinggut #crohnsdisease #crohnsfighter #invisibleillness #chronicloveclub #ulcerativecolitis #foodie #foodporn #diet #healthyeating #nutrition #nutritionist #ileostomy #stoma #hydration #milkshake #strawberry #gelato #foodstyling #foodphotography #foodforcrohns #crohnsnutrition #foodasmedicine #medicine #diet #cereal #coffee #mealplan #foodblogger
🍨EATING WITH AN ILEOSTOMY 🔹 🍕You should be able to eat a normal, healthy diet. A small number of people may find it hard to digest foods containing fibre. If you are having problems, you could try adding fibre to your diet gradually, starting with cooked fruit, like stewed apple. 🔹 🍣You may want to avoid small, hard foods like sweetcorn and nuts. If you get a blockage, you may get pain in your abdomen, you may feel sick or bloated and your stoma may stop working. 🔹 🍹You will need to make sure you are drinking enough fluids to avoid dehydration. This is particularly important in hot weather or when you are doing a lot of physical activity. 🔹 🍦You may sometimes get an increased output from your stoma, if you have a stomach bug. You can replace the lost fluid by drinking as normal. 🔹 🍪Eating salty foods will replace the lost salts. You may want to try rehydration drinks, which you can buy from the pharmacy or supermarket. 🔹 🍛Taking antibiotics and eating spicy food may also increase the output from your stoma. If you have increased output, try to avoid foods and drinks that can make the bowel more active, like fried foods, caffeine and alcohol. 🔹 ☕It is important to tell your stoma nurse if you have ongoing problems with increased output and you feel thirsty, faint or weak, or if your urine is a dark yellow colour. 🔹 🍔You may have a stoma that produces a higher than normal output, which can cause dehydration. The stoma nurse or a dietitian can give you advice on your diet and medicines. 🔹 🔎For more information visit: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/living-with-a-stoma _______________ Instagram: @thegrumblinggut Facebook.com/thegrumblinggut Twitter.com/thegrumblinggut YouTube.com/thegrumblinggut www.thegrumblinggut.com 🔹 #thegrumblinggut  #crohnsdisease  #crohnsfighter  #invisibleillness  #chronicloveclub  #ulcerativecolitis  #foodie  #foodporn  #diet  #healthyeating  #nutrition  #nutritionist  #ileostomy  #stoma  #hydration  #milkshake  #strawberry  #gelato  #foodstyling  #foodphotography  #foodforcrohns  #crohnsnutrition  #foodasmedicine  #medicine  #diet  #cereal  #coffee  #mealplan  #foodblogger 
I apologize for how long this post is, this is a few years synopsis.

After getting genetic testing done at 14 and not hearing any results back, I'm now 15 and having many more pancreatitis attacks, they sent me to do some additional testing in the Cystic Fibrosis clinic to see how much salt was in my sweat, and if I was positive for having CF. (Most people know at birth whether or not they have it, but I'm one of lucky ones that got a late diagnosis.) While having GI issues and pancreatitis attacks going on, I also had UTI's and Kidney infections non-stop so I had to have some stents placed in my ureter's in hopes that they were spasming causing urine to be left in my kidneys for a  prolonged time, and the stents would keep them open so my kidneys would drain properly. Unfortunately the stents made the pain worse and were digging into my kidneys causing them to bleed everytime I moved, so they went in again and removed the stents after having them in for 2 weeks. 
When I was 16 we got the results back saying that I was positive for having 3 mutations in my CFTR gene, meaning I was positive for atypical cystic fibrosis, meaning the pancreatitis attacks would unfortunately keep coming but we now knew why.
I started going to I-Float and it helped with my back pain tremendously, and I was able to start walking with less of a limp, which was fantastic! Although the relief was very short-term it made a world of difference for me in that short amount of time!
I apologize for how long this post is, this is a few years synopsis. After getting genetic testing done at 14 and not hearing any results back, I'm now 15 and having many more pancreatitis attacks, they sent me to do some additional testing in the Cystic Fibrosis clinic to see how much salt was in my sweat, and if I was positive for having CF. (Most people know at birth whether or not they have it, but I'm one of lucky ones that got a late diagnosis.) While having GI issues and pancreatitis attacks going on, I also had UTI's and Kidney infections non-stop so I had to have some stents placed in my ureter's in hopes that they were spasming causing urine to be left in my kidneys for a prolonged time, and the stents would keep them open so my kidneys would drain properly. Unfortunately the stents made the pain worse and were digging into my kidneys causing them to bleed everytime I moved, so they went in again and removed the stents after having them in for 2 weeks. When I was 16 we got the results back saying that I was positive for having 3 mutations in my CFTR gene, meaning I was positive for atypical cystic fibrosis, meaning the pancreatitis attacks would unfortunately keep coming but we now knew why. I started going to I-Float and it helped with my back pain tremendously, and I was able to start walking with less of a limp, which was fantastic! Although the relief was very short-term it made a world of difference for me in that short amount of time!
Being heavier than you want is hard.
Buying bigger clothes is hard. 
Skipping your kids events because you’re embarrassed about your weight is hard.
Hiding in the back of a group photo is hard.
Feeling like your inside don’t match your outside is hard.
Dreading summer and skimpier clothes is hard.
Avoiding being in photos is hard.
Choosing to stay home instead of socializing with friends is hard.
Seeing a past picture of yourself 25 pounds lighter is hard. 
Want to know what’s NOT all that hard? 
Loving and respecting yourself is not hard. 
Eating vegetables is not hard. 
Neither is drinking more water. 
Dedicating 2% of your day (30 minutes) to exercise is not hard. 
Losing weight doesn’t have to suck. It doesn’t have to be hard and torturous and painful and full of deprivation.

What if your days were full of energy and clear thoughts, happiness and gratitude, productivity and advancement? That wouldn’t be so hard, would it? In fact, it sounds pretty great!

You can make this happen with just a few shifts in the choices your make throughout the day. I'll be there to help show you the way. You CAN see 
results in as little as 3 weeks with commitment, 
discipline, and consistency... even during the holidays!  If you're ready to join let's chat!
Being heavier than you want is hard. Buying bigger clothes is hard. Skipping your kids events because you’re embarrassed about your weight is hard. Hiding in the back of a group photo is hard. Feeling like your inside don’t match your outside is hard. Dreading summer and skimpier clothes is hard. Avoiding being in photos is hard. Choosing to stay home instead of socializing with friends is hard. Seeing a past picture of yourself 25 pounds lighter is hard. Want to know what’s NOT all that hard? Loving and respecting yourself is not hard. Eating vegetables is not hard. Neither is drinking more water. Dedicating 2% of your day (30 minutes) to exercise is not hard. Losing weight doesn’t have to suck. It doesn’t have to be hard and torturous and painful and full of deprivation. What if your days were full of energy and clear thoughts, happiness and gratitude, productivity and advancement? That wouldn’t be so hard, would it? In fact, it sounds pretty great! You can make this happen with just a few shifts in the choices your make throughout the day. I'll be there to help show you the way. You CAN see results in as little as 3 weeks with commitment, discipline, and consistency... even during the holidays! If you're ready to join let's chat!
Felt blue yesterday... dealing with fevers, adrenal issues, low blood sugar, migraines etc... but I’m on the incline and happy tomorrow is a new day!! I’m ready for you Monday! 💙
________________________________________________________#believeinyourself#justlive#mitochondrialdiease#ehlersdanlossyndrome#jtube#gtube#port#chronicillnesswarrior#mentalhealthmatters#model#chronicloveclub#modeling#headshot#photography#blonde#blueyes#fashion#wlyg#followyourdreams#love#fun#travel#studiolife#nyclife#indiepop#pop#vocalist#pianist#singersongwriter
Felt blue yesterday... dealing with fevers, adrenal issues, low blood sugar, migraines etc... but I’m on the incline and happy tomorrow is a new day!! I’m ready for you Monday! 💙 ________________________________________________________#believeinyourself #justlive #mitochondrialdiease #ehlersdanlossyndrome #jtube #gtube #port #chronicillnesswarrior #mentalhealthmatters #model #chronicloveclub #modeling #headshot #photography #blonde #blueyes #fashion #wlyg #followyourdreams #love #fun #travel #studiolife #nyclife #indiepop #pop #vocalist #pianist #singersongwriter 
“A Spoonful Of Sugar Helps The Medicine Go Down 🥄”- Mary Poppins|| Successful day with my best friends at 🍭@thecandytopia 🍭in San Francisco 🌉 It was the BEST! So much more fun than the Museum of Ice Cream 🍦💜
—
❌⭕️❌⭕️ Tiff
—
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•
•
#saltycysters #cyster #fibro #cysticfibrosis #curecf #cfawareness #cf #organdonation #organdonationawareness #recycleyourself #donatelife #taylorswift #lungs4tiff #health #love #hope #TiffGotLungs #laugh #dream #cure #doublelungtransplant #donatelife #Chronicloveclub #fivefeetapart #candytopia #candy #swirl #bestfriends
“A Spoonful Of Sugar Helps The Medicine Go Down 🥄”- Mary Poppins|| Successful day with my best friends at 🍭@thecandytopia 🍭in San Francisco 🌉 It was the BEST! So much more fun than the Museum of Ice Cream 🍦💜 — ❌⭕️❌⭕️ Tiff — • • • #saltycysters  #cyster  #fibro  #cysticfibrosis  #curecf  #cfawareness  #cf  #organdonation  #organdonationawareness  #recycleyourself  #donatelife  #taylorswift  #lungs4tiff  #health  #love  #hope  #TiffGotLungs  #laugh  #dream  #cure  #doublelungtransplant  #donatelife  #Chronicloveclub  #fivefeetapart  #candytopia  #candy  #swirl  #bestfriends 
Put on makeup to leave the house. Regretted it.
But hey, I got out! And it was made clear why I do most of my Christmas shopping online 🎄❤️.
Back in bed now where I am safe and warm.
Love you all.
Keep fighting. You're inspiring me daily. 💪❤️
😘
#spoonie #spoonielife #chronicpain #chronicillness #pain #arthritis #fibromyalgia #anxiety #depression #fightlikeawarrior #chronicloveclub #sunday #selfie #winter #makeup #sickfightsback
❤️
I got my Hickman/Broviac replaced with a double-lumen Hickman, meaning it now has two separate tubes that lead to my heart. Because of this, the tube that holds both lines and goes into my chest is twice as thick as my old line, so it is quite sore.  It is two central lines in the same location, rather than having another central line in my arm so that I can be given IV medications that are not chemically compatible at the same time. Many medications will cause a chemical reaction if infused in the same line as my TPN, such as some antibiotics, anesthetics, and some pain/nausea meds. This means that when I had my single lumen Hickman and came to the hospital, I'd often end up having to have a PICC placed because my veins can't hold peripheral IV's for more than a few hours. For the surgery, they used the same site as my old Hickman and used a guide-wire to guide the new central line so that they didn't have to cut my neck to push the line into my jugular vein like last time. I added a diagram to show how the Hickman goes into the chest, is tunneled under the skin, over the collar bone, into the jugular vein, and into the heart. Feel free to ask any questions about central lines or share your own experiences with them! 💖
I got my Hickman/Broviac replaced with a double-lumen Hickman, meaning it now has two separate tubes that lead to my heart. Because of this, the tube that holds both lines and goes into my chest is twice as thick as my old line, so it is quite sore. It is two central lines in the same location, rather than having another central line in my arm so that I can be given IV medications that are not chemically compatible at the same time. Many medications will cause a chemical reaction if infused in the same line as my TPN, such as some antibiotics, anesthetics, and some pain/nausea meds. This means that when I had my single lumen Hickman and came to the hospital, I'd often end up having to have a PICC placed because my veins can't hold peripheral IV's for more than a few hours. For the surgery, they used the same site as my old Hickman and used a guide-wire to guide the new central line so that they didn't have to cut my neck to push the line into my jugular vein like last time. I added a diagram to show how the Hickman goes into the chest, is tunneled under the skin, over the collar bone, into the jugular vein, and into the heart. Feel free to ask any questions about central lines or share your own experiences with them! 💖
Showering this glowing mama-to-be with all the love! 💜 Can’t wait to see what amazing parents you & Ian will make!!
Showering this glowing mama-to-be with all the love! 💜 Can’t wait to see what amazing parents you & Ian will make!!