#chronicloveclub

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Decided to take my meditation outside today. The house seems busy and full of a lot of other people’s lives. I am not a selfish person and want to be able to support my loved ones but I can’t do that if I neglect my own mental health. . It’s easy to get caught up in trying to help out others and forget to take the time for yourself. Even if it is 15 minutes away from everyone to reset your mind and focus on your own wellbeing. It’s so important. . It is not selfish, it is necessary. . What do you do to refocus ? Have you taken some time for yourself today ? . 🌸💗🌸
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I have a lot going for me right now. I have a job, a roof over my head and a car to take me wherever my heart desires. But I’m struggling. More than I ever thought possible at this point in my life. I keep telling myself I’m blessed to be alive, I should be happier. But reality is that 2017 will haunt me for the rest of my life, whether I admit to it or not. And just because I’m doing better than I was last year, doesn’t mean I’m not well. I’m still battling progressive illnesses. And now I’m facing a entirely new battle with Lyme and trying to figure out how to afford treatment. And to be painfully honest, I’m lonely. A loneliness that hurts harder than any loneliness I’ve ever felt before. Everyone my age is pair bonded, many with families of their own, and I’m just starting my life over. Very much alone. So yesterday I treated myself to a mani/pedi and getting my nose re-pierced. I felt pampered and at peace, even if for only a few hours. Today is back to reality. Chances are those will be my last splurges for quite some time, but I’m happy I invested in self-care. I keep trying to take care of my self best I can and hold on to hope that my story isn’t over yet. If it weren’t for chronic illnesses, I would have been packed up and moved by now. Somewhere new. Somewhere fresh. Somewhere not haunted by all my failures and traumas. But a gal can dream💭.
Simply enjoying time amongst the trees and the soothing sound of a babbling brook.🌲// After a rainy drive up to Vermont on Saturday, this afternoon is sunny and beautiful. I went on a spontaneous visit to my grandparents’ house yesterday, and I’ll see more loved ones this afternoon. Traveling is extremely tiring, though. In all honesty, I shed a few tears last night after reflecting on how much more physically able I was on my last visit to VT (several years ago). Focusing on that comparison doesn’t help, so I woke up this morning and decided to celebrate what I *can* do and be thankful for my mobility tools. After shifting my mindset, I had a great time with my parents on a local bike path. As my mom pushed me in the wheelchair, we all enjoyed a view of the mountains. Passers by may have heard singing, too! Life is imperfect, but I still choose joy.
Nurse A vs. Nurse B
Passing on the clouds from @amigasativa in her #stopdropandglob ... I'm starting my morning with some coffee and a nice bowl of Lavendar Jones before the rest awaken, and yeah baby the floral notes are on point! Can I get some clouds your way from: @onelove_redd @universally__plugged @gaby_gatsby_ 💋💨💨💨💚🌿#cannabiscommunity #cannbisculture #cannaparentscan #cannamom #medicated #thespooniesisterhood #chronicloveclub #sisu #enfj #hydroponichippies #hotlife710 #marijuanamadams #bethechange #bethenoise #goldenrule #oovlife #medicatingproperly #endthestigma #endocannibiniodsystem #cannablissqueens #cannabisissafer #musicallyapp Intro music 🎷-Runaway by The Glorious Sons
I am truely enamored by some beautiful souls that I have come across, but none speaks more loudly than someone referencing finding my own spark! I am so good at focusing on everything around me, I lost my own light for a while, but it is back and burning oh so bright! #changeisgunnacome #beaware #bekind #blackouthate #oovlife #endthestigma #bethechange #bethenoise #hempheals #goldenrule #cannabisheals #safer #educationiskey #marijuanamadams #cannaparentscan #chronicloveclub #thespooniesisterhood #cannablissqueens #reallegalization #decriminalization #cannabis #hemp #raleaves #sisu #overmedicatingcrisis @mother_indica
The “T“ on my face stands for Thankfulness. My life isn't perfect at all but I am thankful for everything I have. I have awesome friends who are always there for me. My family, standing right behind me, supporting every decision I make. I am able to study what I love and live in a country that supports me and my health in the best possible way. I am even thankful for becoming ill. Without this disease I wouldn't have become who I am. I started to find happiness in the smallest things and I learned: you don't have to be perfect or need to have a perfect life to be happy. Happiness comes from within. . . . #ibd #ibdawareness #crohns #colitis #invisibleillness #chronicillness #ibdsuperheroes #lovelife #happiness #thankful #spoonielife #spoonie #spooniesisterhood #chronicloveclub #warrior #survivor #stelara #summer #sun #chronicpain
Finally got to listen to “out of range this morning. Great podcast @betacellpodcast and @yourejustmytype1. Loved it. My general thoughts are you guys have a great idea here to just sit down and be real with everyone. It shows the similarities, differences, possible ideas, and different insights that are out there. BTW, the little rabbit trail are awesome, because what T1 doesn’t go off an rabbit trails in their own mind constantly while doing things any day of the week. Sharing your A1C publicly: I agree with everything you guys said about the purpose of it, seems very inaccurate to base all of our success or lack of on an average of 3 months that we really have little control over what factors make that 3 months the way it was. I commented on @nerdscanfight post the other day about comparing our own results with others can allow us to let diabetes win, especially if we compare results. I honestly doesn’t know how anyone can keep such low results without being low all the time like yours was Laura. I’ll be honest too- I do share mine, but I also put things in the post that I did my best. I’m working to do better, and I also do it to show that even after 34 years of living with T1, I’m doing what helps me be my healthiest, best self. And if a 7 is the lowest I ever get, then so be it. Craig and I where commenting back and forth last week on a Facebook post about how much more important we both feel to be in range and have a smaller standard deviation shows better management. Just a personal thought on having separate T1 accounts and personal accounts-mine are combined. I do that because my life as me, as a father, husband, friend, shipbuilder, son, brother, Christian, T1,etc are all one in the same. Not one of those things need to be hidden. So I share them all on one account. Granted most of my followers are T1s, celiac or other chronic illness warriors, but it doesn’t bother me to have them all on one account. I also follow some of the T1s personal accounts as well, but not all. You guys talked a little bit about what things were like before all the technology when we weren’t so focused on the direction of an arrow, or what was going on between meals with
Definitely could use this😍. Chronic illness time + energy saver. #nutmilkmadehealthfully
So, I couldn’t not post this one. Dex said I was in the 70s all night long. I slept great, felt good, finally stable as the second pic shows.....woke up to this bad boy layin low and never felt it at all. Which is not good at all. But it does tell me I needed more basal with Fiasp for sure. Not quite as much as I bumped it up though. So I corrected this with breakfast, and hopefully I didn’t take to little a bolus for it. And hopefully dex bets back on track fast.
Yesterday evening I had no less than 15 people ask me if I am better. Only 2 people asked how I felt in myself and said if I needed anything to let them know. I spent all of yesterday morning and afternoon off my head on pain meds but had to force myself out, agony and all, as my daughter was performing. I understand people don't understand that looking good does not equate to being better and after 23 years of living with this it should probably slide off but it baffles me how people who have known me for a huge portion of this battle think that I am better. I feel that better awareness of invisible illnesses needs to be out in the world so others can understand how it can work. I said to hubby sometimes its a curse to be looking awesome but inside screaming with pain...then I came across this wee boyo and had to share because if you feel this way and thinks no one understands then I want you to know that there are people out there who do understand and are there for you. Chronic illnesses can be exceptionally lonely especially given that not all illnesses are visible 💗 • • • #invisibleillness #chronicillness #chronicpain #chronicpainwarrior #butyoudontlooksick #youdontlooksick #chronicloveclub #spoonie #spoonielove #spooniesupport #chronicillnesswarrior #chronicillnesslife #spooniesisterhood #fatigue #pain #lonely #depression #mentalillness #disabledandproud #disability #supportsystem #disabledandawesome
After a really busy weekend for a spoonie, I would really love a whole day to relax. . Not likely, I have phone calls to make. I have appointments to arrange. I have decisions to make. Physically it isn’t a demanding day but mentally I am going to be pushed to my limits. . I hope you all have a lovely monday and that you remember to listen to your body and show it some love 🌸💗🌸 . 📸 : @veronicadearly
Playing with “Bad Buddy” He is so much work for my grandma and wasn’t sleeping at night and was pooping on the carpet when they were sleeping. But last night I came over and played with him and he slept through the night. So tonight I went over and hopefully he will sleep through the night again. I still have a fever, but now I am having my tongue is really sore and there are spots where the taste buds are falling off. So, that’s that. It has been almost a whole month now so 🤦‍♀️ Also, I posted a few days ago about being self conscious about my eye lid sag, but I have been looking through my childhood pictures and it was already sagging way back in preschool.
#FastRepost from @cannaparentscan by @fastrepost_app ••• Sugar is the entrance "drug" and our nation is in an #overmedicatingcrisis from everything including sugar, electronics, pharmesuticals, etc.... If you can think it, there is someone using it to numb themselves from everyday life! Let's #endthestigma on CANNABIS and HEMP because #wholeplantuse is our exit for not only our overall health, but our environment! -femj81 #thinkbiggerpicture #cannabiscommunity #cannbisculture #cannaparentscan #cannamom #medicated #thespooniesisterhood #chronicloveclub #sisu #enfj #hydroponichippies #hotlife710 #marijuanamadams #bethechange #bethenoise #goldenrule #medicateproperly #beaware #educationiskey #cannabisissafer #hempheals #cannabisheals @cannabisandyou
Sugar is the entrance "drug" and our nation is in an #overmedicatingcrisis from everything including sugar, electronics, pharmesuticals, etc.... If you can think it, there is someone using it to numb themselves from everyday life! Let's #endthestigma on CANNABIS and HEMP because #wholeplantuse is our exit for not only our overall health, but our environment! -femj81 #thinkbiggerpicture #cannabiscommunity #cannbisculture #cannaparentscan #cannamom #medicated #thespooniesisterhood #chronicloveclub #sisu #enfj #hydroponichippies #hotlife710 #marijuanamadams #bethechange #bethenoise #goldenrule #medicateproperly #beaware #educationiskey #cannabisissafer #hempheals #cannabisheals
Friday night. Dolled up with the handsomest date to laugh with Jim Jefferies! 😍😍😍😍 I found out why you're not supposed to sit for longer than 15min after a spinal fusion. But man, it was a good night. 💜 #spoonie #spoonielife #chronicpain #chronicillness #pain #arthritis #fibromyalgia #anxiety #depression #fightlikeawarrior #chronicloveclub #friday #tgif #chronicfatigue #spinalfusion #JimJefferies #selfie #makeup #date
CLC MEMBER FEATURE:Hey everyone! My name is Goretti. I am 26 years old, and this is my story. • In February of 2017, I began noticing that I was really fatigued. Being in nursing school, I would just blame it on the lack of sleep. But then I started getting pain in my joints. It started off in my hands and went to my legs, arms, and jaw. There were days where I literally couldn't walk or get out of bed. I went to the Dr. & was diagnosed with Rheumatoid Arthritis at 25 years old. I was devastated & went into immediate denial. I refused medication, which made my symptoms/progression of my disease worse. It was to the point where the disease began to attack other organs, including my lungs. One day while I was in clinical, I began coughing up blood, & from there I found out that I had clots in my lungs that nearly killed me. All this caused me to fail out of nursing school and caused me to fall into a deep depression that I am still fighting to get out of. • Since then, it’s been a crazy rollercoaster ride of different medications/injections, hospitalizations & ER visits. It’s been very hard, but I have finally accepted this as part of my life. Working on restructuring my life around this disease has been very challenging. As someone who also has developed Fibromyalgia, dealing with the pain is a day to day process; simple things like getting out of bed & brushing my teeth are sometimes hard to do. But with the support of my doctors, family, and close friends, I’m going to live my life to the fullest! • I advise anyone who is dealing with an autoimmune disease to not let it rule your life! We are strong! I am more sympathetic, patient, and more appreciative of life now. I don’t sweat the small stuff as much anymore. I am learning to listen to my body, and rest when I need to. I still continue to do the things that I love (dancing, cooking, etc.) and I will re continue my journey to become a nurse! I may have a disease, but it WILL NOT HAVE ME!! #chronicloveclub
Seriously 30 minutes later....meter test 10 minutes ago was 51. No I don’t feel it at all. Maybe a few adjustments again. But at least I’ll not hovering at 200 like the past 2 days!!!
FINALLY!!!! Upped my basal and made it one single rate with Fiasp after lunch today. Hopefully it keeps working and keeps me where I’d like to be. When diabetes wants to cooperate anyway!!
THE MORE YA KNOW. 🤓 In 1989 they discovered the defective CFTR gene that causes cystic fibrosis. This allowed scientists to understand cystic fibrosis at the most basic level. Since 1989 more than 900 different mutations have been discovered. The most common mutation is Delta F508. However, there are hundreds of rare (nonsense) mutations. Much research has revolved around the Delta F508 mutation...however, there has been a lot of recent research on more rare mutations! The @cf_foundation has made a pledge to not stop “Until it’s Done.” That means a cure for ALL living with cystic fibrosis, those with common and rare mutations. • I inherited the most common, Delta 5F08 mutation from my dad. And inherited Y1092X C>A, a rare mutation, from my mom. • If you have cystic fibrosis, do you know which mutations you have? Do we have either in common?? #CFAwarenessMonth • PS. My dad’s a funny guy
“The future belongs to those that believe in the beauty of their dreams.” |Eleanor Roosevelt| • I haven’t been able to stop day dreaming about Versailles today... and then I realized we were there on this day two years ago while on our honeymoon. • Coincidental? I think not. The body remembers these things✨ . . . . . #liveauthentic #versailles #adventure #wanderlust #dream
4 meters...3 different readings. Dex says 155.
Here are the tears from my biology GCSE revision, sitting on the waxy cuticle and upper epidermis of this (very big) leaf. image description: raindrops on a big green leaf.
Another festival season has arrived and unfortunately Orla Bee Handmade won’t be popping up at any festivals again this year due to me needing to stay in hospital for a good few months (I’m not so sure that they’d wheel my bed out to a party in a field 🎪) As I said last year this breaks my heart because festivals have been part of my life since I was a baby. I’d much rather be in our adapted campervan bed- looking over our rainbow Orla Bee stall with live music drifting in- than a hospital bed but there’s always next year 💔 So, I’m going to leave you with this quote that we had on our sign at Green Gathering 2016 and let you know that hopefully my Etsy shop will reopen soon with lots of tie-dye goodies- ‘You can’t buy happiness but you can buy tie-dye and that’s the same thing really’ 🌈✨ #OrlaBeeHandmade #Festival #FestivalStall #Campervan #Hospital #AdaptedCampervan #EtsyShop #TieDye #HandDyed #Rainbow #YouCantBuyHappiness #ButYouCanBuyTieDye #EtsySellersOfInstagram #PeopleHopeTribe #ChronicLoveClub #ChronicIllnessAwareness #Spoonie #Disabled #DisabilityAwareness #InvisibleIllnessAwareness #InvisibleDisabilityAwareness #CRPS #Dystonia #EDS #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #AdrenalInsufficiency #PituitaryDysfunction #PTSD
Repost @sigmundtheservicedog @chloethesdit ・・・ Everyday of my life is a service dog meet up 😂 ... One thing we at SDS absolutely love is supporting LGBT+! Today we all came together to say that these two Saviors and their handlers are one of our favorite accounts that show this with no problem. We would like to present you both with a gift! DM us for more information! ... #servicedog #hospital #hospitaldog #respectthevest #servicedogssavelives #servicedogsofinstagram #tasktrained #dogtraining #emergencyroom #bloodwork #arrhythmia #tachycardia #chronicillness #chronicloveclub #chronicpain #spoonie #spoontheory #migraine #sensoryprocessingdisorder #spoonieproblems #latenighthospitalvisit #aintnosleepforthespoonies ... Use #ServiceDogSaviors or tag us to be fetured! We do follow!
HELL YEAH ! . Perfect tee for surviving the weekend 💪🏻❤️ . It’s been tough but it has been totally worth it. Celebrating the youngest and the oldest all in one weekend. . New baby chambers and my grandad turning 80 ! . I hope you’ve all had a lovely weekend. I have a week of doctors appointments so will be keeping my head down and focusing on being the best advocate for myself as possible.
Studying in the garden makes me feel so much calmer, like the next half an hour is an eternity and I have more than enough time to catch up on all the areas in which my knowledge is beyond lacking! I'm so glad I'm able to be out here and hope that wherever you are (literally and health-wise) you are able to find some calm somehow. That doesn't mean the feeling lasts, trust me I'm FREKING OUT where have the weeks gone??? More time please! Make A levels a 3 year course! ~ Photo description: language society and power book resting on some sunny grass with a daisy (pretty flowers beat manicured lawn any day he he he) ~ ~ ~ #spoonie #chronicillness #invisibleillness #sickchick #mecfs #meawareness #spoonieblog #hypermobility #chronicpain #alevels #studying #stuffthathelps #ChronicLoveClub
4th pod with Fiasp...3rd pod that day 3 will not stay down. This is not going to work if this keeps up like this. So my conclusion is: -yes I do stay more stable. But that stability is nice if I It was down below 110. But consistently 130+ is not where I’d like to be. -corrections work half the time, but don’t the other half. -bolus for food has been starting to burn off faster ham the carbs absorb. This was not the case last week when I first started using it. I’m not sure if I’m going to continue trying this. I do not want to go on like this or changing my pods out every 2 days. Back to the burn off issue again for a minute...at first, carbs were being covered really good. BG was also lower and stable. So I’m seeing it get slowly worse on the BG level. So it stays higher in my range, it burns off faster and doesn’t bring my BG back down or cover the carbs as well as it could. If I do stick with novolog, I will buy some syringes to use for high BG that I need to come down fast and is the Fiasp for that. Comments and suggestions are appreciated. I’ll try anything, but I’m starting to agree with those that say it doesn’t work as well. I’ll keep y’all updated on what I’m doing like I have been during this test.
@Repost from @chronicloveclub - CLC MEMBER FEATURE: Hi everyone! My name is Emma, and I’m 14 years old. In March 2016, when I was 12 years old, after having lots of unexplained knee pain, thinking it was just from a fall at gymnastics, an X-ray confirmed I had osteosarcoma, a malignant tumour that originates in the bone. I was shocked and devastated. • I went through 9 months of intensive high dose chemotherapy, 3 major surgeries including a form of amputation called rotationplasty. It was painful, hard, and I didn’t always have a smile on my face. • I finished chemotherapy on December 30th, 2016 and went on continuing the prosthetic fitting and learning to walk process. I was making great progress! Slowly I returned to everyday activities and eventually went back to dance classes and jumping on the trampoline! I was feeling great and had no symptoms of concern. • I haven’t mentioned this on my account yet since I was in denial of it, however I think now could be a time to. On December 18, 2017, when I had my 3 month follow-up scans, it revealed recurring spots in my lungs which required 2 other surgeries on my lungs in January to remove them. But NO chemo this time. I was even more crushed this time as I didn’t see this coming... • Slowly but surely, I worked my way back up again, physically and mentally. I am AGAIN back on the trampoline, gymnastics flips, and everyday life. • My biggest problem right now is not my leg or the challenges that come with it, it’s the fact that only 4% of cancer research funding goes to childhood cancer research! I think this is so unfair and sad to learn how the toxic drugs I was treated with were the same ones that our Canadian hero Terry Fox, was treated with almost 40 years ago! I am determined to change this and help children access better and more efficient treatments! • I hope my story can help others realize that they are never alone in a fight and that they can come out stronger after overcoming their challenges! • “You have been assigned this mountain ⛰to show others it can be moved➡️” • Lots of love and strength to you all, Emma #chronicloveclub #cancer #fuckcancer #survivor
Wow! I recently received a blast in the past in the mail from my aunt, and got to relive some childhood and high school memories... I did a little #instamemory searching and I've be in and out of #igcommunity for 4 years in a few months...there may be a #giveaway brewing on my anniversary! Better start prepping....BTW prep has begun for @cannaparentscan when we hit #420 #followers ... Stay tuned! 💚💋💨💨💨 #cannabiscommunity #cannbisculture #cannaparentscan #cannamom #medicated #thespooniesisterhood #chronicloveclub #sisu #enfj #hydroponichippies #hotlife710 #marijuanamadams #bethechange #bethenoise #goldenrule #cannablissqueens #endthestigma #medicateproperly #safer #cannabisissafer
I have to give mad love and props to @saferstencils for being such a great person and continuously fighting that #cannabisfreedom fight! I have admired you for years and it's an immense pleasure to have your help! #cannabiscommunity #cannbisculture #cannaparentscan #cannamom #medicated #thespooniesisterhood #chronicloveclub #sisu #enfj #hydroponichippies #hotlife710 #marijuanamadams #bethechange #bethenoise #goldenrule #medicateproperly #saferstencils PLEASE give him credit if you share this post! 💚
Repost from @cannaparentscan As a community that supports parents and families on their journey while they medicate with cannabis, we cannot emphasise safety and education enough! Be aware of your state laws if you are a parent and protect your family! #cannabiscommunity #cannbisculture #cannaparentscan #cannamom #medicated #thespooniesisterhood #chronicloveclub #sisu #enfj #hydroponichippies #hotlife710 #overmedicatingcrisis #marijuanamadams #bethechange #bethenoise #goldenrule #safetyfirst #educationiskey #endthestigma #quotescreatorapp
CLC MEMBER FEATURE: Hi everyone! My name is Emma, and I’m 14 years old. In March 2016, when I was 12 years old, after having lots of unexplained knee pain, thinking it was just from a fall at gymnastics, an X-ray confirmed I had osteosarcoma, a malignant tumour that originates in the bone. I was shocked and devastated. • I went through 9 months of intensive high dose chemotherapy, 3 major surgeries including a form of amputation called rotationplasty. It was painful, hard, and I didn’t always have a smile on my face. • I finished chemotherapy on December 30th, 2016 and went on continuing the prosthetic fitting and learning to walk process. I was making great progress! Slowly I returned to everyday activities and eventually went back to dance classes and jumping on the trampoline! I was feeling great and had no symptoms of concern. • I haven’t mentioned this on my account yet since I was in denial of it, however I think now could be a time to. On December 18, 2017, when I had my 3 month follow-up scans, it revealed recurring spots in my lungs which required 2 other surgeries on my lungs in January to remove them. But NO chemo this time. I was even more crushed this time as I didn’t see this coming... • Slowly but surely, I worked my way back up again, physically and mentally. I am AGAIN back on the trampoline, gymnastics flips, and everyday life. • My biggest problem right now is not my leg or the challenges that come with it, it’s the fact that only 4% of cancer research funding goes to childhood cancer research! I think this is so unfair and sad to learn how the toxic drugs I was treated with were the same ones that our Canadian hero Terry Fox, was treated with almost 40 years ago! I am determined to change this and help children access better and more efficient treatments! • I hope my story can help others realize that they are never alone in a fight and that they can come out stronger after overcoming their challenges! • “You have been assigned this mountain ⛰to show others it can be moved➡️” • Lots of love and strength to you all, Emma #chronicloveclub
As a community that supports parents and families on their journey while they medicate with cannabis, we cannot emphasise safety and education enough! Be aware of your state laws if you are a parent and protect your family! #cannabiscommunity #cannbisculture #cannaparentscan #cannamom #medicated #thespooniesisterhood #chronicloveclub #sisu #enfj #hydroponichippies #hotlife710 #overmedicatingcrisis #marijuanamadams #bethechange #bethenoise #goldenrule #safetyfirst #educationiskey #endthestigma #quotescreatorapp
It’s only cold if you’re standing still ❄️ We went to look at refrigerators and beds today. And next door to the bed place was a Rita’s. It was my first time and it was great 👍 As for the refrigerator, we still don’t have one but we are starting to be professionals at this #norefrigeratorchallenge . I know that is not a real thing but it is going on 6 weeks so we have to joke about it.
Boredom and emotional regulation plagues my youngest! I found this gem to replace a screen in the car and for those moments where he takes a self-timeout. Super proud parent moment when your hypersensitive offspring recognizes for himself when his emotions are too high! This was not something I was encouraged to do as a child, I was told I was too sensitive, my feelings got hurt too easy, or that I'm tough and need to suck it up cupcake... #mentalhealthawareness #mentalhealth #cannabiscommunity #cannbisculture #cannaparentscan #cannamom #medicated #thespooniesisterhood #chronicloveclub #sisu #enfj #hydroponichippies #hotlife710 #marijuanamadams #bethechange #bethenoise #goldenrule #medicateproperly
Yesterday, I spent 6 hours getting fluids and doing different tests at Urgent Care. This doctor REALLY wanted to help me, which was a blessing. She wanted to admit me into the hospital and give me artificial nutrition, but my lab results are not quite there. I have lost 10 pounds this week due to not being able to keep down ANY solid food. I am desperate.
#JACKIESARMY Great Strides is the largest national fundraiser for the Cystic Fibrosis Foundation. There are walks in 500 cities nationwide. More than 125,000 striders walk each year! All walking towards the same goal, a cure for cystic fibrosis. • I had THE BIGGEST smile on my face seeing friends support me by walking today. I had friends walking in Charlotte, Richmond & Georgia! Some even walked in the pouring rain!! All a part of Jackie’s Army. I wouldn’t be where I am today without my army behind me, motivating me and cheering me on. LOVE YOU ALL & THANK YOU! 💜 • We will walk UNTIL ITS DONE. Until a cure for ALL with CF is found. #CFAwarenessMonth
Although I wasn’t able to walk the full 5k (3.1 miles) like I had been wanting to because my joints/back/lungs were just not having it, I was able to finish the mile walk and that’s huge for me since I’m usually in severe pain at less than half of that. I am so happy to have made the progress I have in the last 6 months due to getting an amazing team of doctors, without them, this absolutely would not have been in the cards for me. Getting to do something I haven’t been able to do in years at an event for my disease is such a great feeling. I’m in a fair amount of pain and it’ll take a couple of days to get back to my normal, but it was a good day and I’m so glad to have done it. Thank you to everyone who donated to my fund and to my family who walked with me!! #WTCA #WalkToCureArthritis #ArthritisFoundation #PsoriaticArthritis #Spondylitis #AutoimmuneArthritis #ChronicIllness #InvisibleIllness #Spoonie #ChronicLoveClub
Another one from my spirit animal @veronicadearly . . We all know I love a good quote with pretty typography and visually pleasing colours but sometimes life is too complicated to be soothed by an inspirational quote. . Life is wonderful, confusing,unpredictable, hectic, overwhelming, emotional and that is just a Monday morning. . Don’t ever feel discouraged if you don’t solve everything in one day/week/month/year. Life is tricky and it takes time to heal from most human experiences, even the good ones. . The difference between a good day and a bad day could fall anywhere on the giant spectrum that is this human experience. . Be kind to yourself. Be gentle with yourself. . 🌸💗🌸
Happy Saturday, y'all! This week I'm posting a pancake recipe that is guilt free, gluten-free, dairy free and vegan! What I love about these pancakes is that you can freeze your leftovers and they taste just as delicious defrosted. I hope you all try this recipe and love it as much as I do! Enjoy!! • • • Blueberry Buckwheat Pancakes ............................................. Ingredients: 2 flax eggs 1 cup buckwheat flour 3/4 cup nut milk/ coconut water 1 tsp baking powder 1 tsp coconut oil (for cooking) 2 cups blueberries .............................................. Directions: 1. Whisk together eggs & your choice of liquid. 2. Add flour & baking powder. 3. Put your coconut oil in a pan & turn the heat on until coconut oil is melted. 4. Once melted, scoop out (with a cookie scoop) bits of the batter into the pan. Take your blueberries and sprinkle some onto the top of your raw batter in the pan. 5. Cook pancakes until a dark brown color (just make sure they're not burned☺️). This recipe should make ~12 pancakes • • • Thanks for ready friends! Hope you are having an amazing May. Keep strong fellow fighters & never forget to stay positive no matter your circumstances! Until next week💕 #spooniewarrior #spoonie #spoonielife #vasovagalgal #potsie #potsiegirl #potsiestrong #potsawareness #lymediseaseawareness #lynediseaseawarenessmonth #lymie #lymielife #glutenfree #glutenfreevegan #glutenfreerecipes #guiltfree #dairyfree #dairyfreefood #dairyfreelife #vegan #veganrecipes #veganfood #peoplehopetribe #chronicloveclub #invisibleillness
Hey friends 🙃 We are so excited to officially announce that we will be moving from Columbia to Denver in just a few short weeks 🏔 • Our time in Columbia has been insane to say the least. I completed my masters here, Haran and I met here, and connected with so many cool people here. The best moments and worst moments of our lives have all happened while living in Cola. We have grown so much as people these 6 years thanks to this city and the people in it. • Change is always hard and this transition is bittersweet but we are super excited for the adventure that is to come. We are especially hopeful that this move will be key in managing my health issues🙏🏻 • So start planning your next trip to Denver cause we cannot wait to host you! 😉 . . . . . #denverbound #denver #moving #newchapter #ravindamngirl
📣For a long time I used to be embarrassed with having Crohn's. Partly because I didn't understand it and if I couldn't understand it then how on earth was I going to explain it to my friends. So I did the easy thing - went on living life pretending everything was OK. 🔹 💊I first started to experience symptoms at around 17 years old, being told that they were due to exam stress and the lack of fibre in my diet. I knew something wasn't right as stomach pains would leave me unable to get out of bed,exhausted from the lack of sleep, weight and blood loss (TMI I know but hey its part of the process). 🔹 💉I remember going to my doctor and saying that this can't be normal and after a blood test revealed I was anaemic and had raised CRP (C-reactive protein which is an inflammatory marker) I was referred for further investigations. 🔹 🚑Now here came the earliest exposure to my future career. Small bowel barium meals and enemas, MRI scans, colonoscopies...you name I've most likely had it done. 🔹 🏥I feel my Crohn's has influenced my career choices because at this point I was pretty much used to the hospital environment and having different tests and examinations done. I felt that a career in healthcare was the way to go. 🔹 ☢Training to be a radiographer I've got to experience both sides of the diagnosis process. Having undergone most of the scans and procedures available I can sympathise with the patients I meet who on occasions say "you have no idea what it's like". Believe me i do!! 🔹 🔬As someone who is trying to promote interest in research it's no surprise that Crohn’s is one of my areas of interests, particularly the role nutrition and exercise play. I've started to create content for my blog to share my own personal experiences and views. I hope to raise awareness and remove the embarrassment of the social stigma associated with IBS. 🔹 📱My blog on Crohn's (The Crohn Chronicles) is now up on my website (link in bio) and I'm more than happy to answer any questions on what to expect from the different methods used to diagnose Crohn's or about IBS. 🔹 #radiography #radiographystudent #theresearchrad #studentradiographer #crohnsfighter #chronicloveclub #blog
Repost @service_dog_tiger ・・・ • From last night's hospital visit. Tiger was so on point. Everyone commented on how completely unfazed he was, even with some crazy stuff going on right outside our room (like a very stinky code brown, a delirious guy who wandered into our room, and some screaming kids). Fun times 😅 • • • • Got EKGs, SO much bloodwork, x-rays, and... honestly I can't even remember all the other stuff. Fortunately (or unfortunately?) my labs (blood) came back normal so that confirms my heart issues are electrical/neurological, like my dad's. Cleveland here I come 🤦🏼‍♀️ • • • • Tags • #servicedog #hospital #hospitaldog #respectthevest #servicedogssavelives #servicedogsofinstagram #tasktrained #dogtraining #emergencyroom #bloodwork #arrhythmia #tachycardia #chronicillness #chronicloveclub #chronicpain #spoonie #spoontheory #migraine #sensoryprocessingdisorder #spoonieproblems #latenighthospitalvisit #aintnosleepforthespoonies ... Saviors Will Save When Their Handlers Need Them Most! Go Tiger! ... Use #ServiceDogSaviors or tag us to be fetured! We do follow!
"My lungs are from my selfless donor who died in a fatal car accident. Thanks to them registering to be a donor, I was able to get a second chance at life and have the quality of life I’ve dreamt about." - @tiffrich22 Did you know you could save up to 8 lives by registering to become a donor? To register go to your local DMV, online at Donatelife.net or organize.org. ❤️ . . . . #cysticfibrosis #cfawareness #curecf #doublelungtransplant #cyster #fibro #donatelife #organdonation #donor #65roses #recycleyourself #justbreathe #spoonie #chronicloveclub #organdonationawareness #donatelifemonth #save8
I did it. . I managed to whole afternoon and didn’t need to leave early. I was up early to prep some food and I had such a lovely time at the baby shower. I definitely needed to lay down in the car on the way home and took some pretty strong painkillers when I got home, but I did it! . It was so wonderful to spend the afternoon with family celebrating the tiny human growing inside that little bump of Holly’s. . She is one very loved little girl and she isn’t even here yet. . I am off to put on pyjamas and watch some elementary until I fall asleep. . Round two tomorrow for a family BBQ which be a little harder but still looking forward to it. . 📸 : me and my pa all baby shower ready 🌸💗🌸
It’s world IBD day! Here’s a #tb of me cos I’m currently recovering from surgery and feeling my worst! • I started this page because basically it was rare that I would see a POC on IBD pages so I always found it hard to relate to anything I saw online. Even all the literature I was given would feature white people with their perfectly formed little stoma’s. My stoma and scars looked horrendous in comparison and it would make me feel kinda shitty. My experiences were different and my worries weren’t shared especially as a Muslim. I worried about how I’d do wudu or if I was allowed to fast. • I know Asians don’t really like talking about issues like this, I felt that personally. Even though my immediate family and friends were super cool, extended family and ‘family friends’ weren’t told details cos they wouldn’t get it or would make ignorant comments or give loads of unsolicited ‘advice’ 🙄 Maybe that’s why there’s isn’t a large community online and even though I still find it hard to organise my thoughts, I know it’s important to speak about my experiences in the hope that maybe someone else can relate and feel better in some way. That’s the aim anyway ✌🏽 • • • • #WorldIBDDay #Crohnsdisease #Crohnsandcolitis #crohnswarrior #crohnsfighter #muslimswithcrohns #chronicillness #chronicloveclub #crohnsandcolitisuk #ostomate #crohnsandcolitisuk #stoma
Today's lunch was an openfaced short rib sandwich with a side of turnip fries. I have to say I knocked it out of the park! I've changed my eating habits in March and following the simple principles of #2BMindset and I'm proud to announce that I am officially down 22 lbs. If you follow the 🐇's they'll lead you to the promise land. #veggiesmost
Having a disability doesn’t and will never stop me from being happy. I enjoy life to the fullest because life is a blessing. I might have some extra challenges to get to where I want to be but I will continue to work hard until I accomplish my goals. It’s not going to be easy but I know that NOTHING IS IMPOSSIBLE! #hemiplegiccerebralpalsy #epilepsywarrior #scoliosis #stayingpositive #warrior #selflove #diffrentisbeautiful #disability #justkeepswimming #lifeisbeautiful #chronicloveclub
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