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Finally able to enjoy a bath 🛀
It's been 3 months of waiting for my incision to heal, and now I'm finally able to take baths and swim! Obvs I've been able to shower lol but unable to be submerged in water. 💦
I have a bunch of bath bombs stored up and am so excited to use them alllllllllll! 😍
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#spoonie #spoonielife #chronicpain #chronicillness #pain #arthritis #fibromyalgia #anxiety #depression #fightlikeawarrior #chronicloveclub #wednesday #bath #bathbomb #lush
Finally able to enjoy a bath 🛀 It's been 3 months of waiting for my incision to heal, and now I'm finally able to take baths and swim! Obvs I've been able to shower lol but unable to be submerged in water. 💦 I have a bunch of bath bombs stored up and am so excited to use them alllllllllll! 😍 💜 #spoonie  #spoonielife  #chronicpain  #chronicillness  #pain  #arthritis  #fibromyalgia  #anxiety  #depression  #fightlikeawarrior  #chronicloveclub  #wednesday  #bath  #bathbomb  #lush 
Eek!!!! I totally scored a teak wood glider for free!! It's alittle broken, so the hubs needs to fix it up, but WHAT A SCORE! Side of the road garbage is some of the best stuff! #noshame 💁 It's the little things I get excited over now...chronic illness has totally changed that about me. I don't take things for granted anymore!! #teakwood #treasures #garbageday #yardstuff #uctd #microscopiccolitis #anxiety #depression #raynaudsdisease #hypermobilejoints #siccasyndrome #sickgirl #spoonie #autoimmunedisease #invisibleillness #chronicillness #pain #fatigue #chronicpain #chronicloveclub
Eek!!!! I totally scored a teak wood glider for free!! It's alittle broken, so the hubs needs to fix it up, but WHAT A SCORE! Side of the road garbage is some of the best stuff! #noshame  💁 It's the little things I get excited over now...chronic illness has totally changed that about me. I don't take things for granted anymore!! #teakwood  #treasures  #garbageday  #yardstuff  #uctd  #microscopiccolitis  #anxiety  #depression  #raynaudsdisease  #hypermobilejoints  #siccasyndrome  #sickgirl  #spoonie  #autoimmunedisease  #invisibleillness  #chronicillness  #pain  #fatigue  #chronicpain  #chronicloveclub 
trying to tell myself this over and over. I’m impatient. I’m not good at being content in this place.
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be patient. show yourself grace. one moment at a time. love yourself.
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#encouragement #youareenough #selflove #liveauthentic
trying to tell myself this over and over. I’m impatient. I’m not good at being content in this place. • be patient. show yourself grace. one moment at a time. love yourself. . . . . . #encouragement  #youareenough  #selflove  #liveauthentic 
Dessert.
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I need to change the way I approach my (lack of) good days. This year, with fatigue and pain at an welcome high, I’ve been cancelling some plans in order to prioritise others, finding that I’m still not well enough despite my best efforts, and it’s been making me pretty miserable as a result. Social gatherings missed, marches prepared for and missed, events happening without me there and the tickets are still mocking me from my shelf for it. And don’t get me started on my therapy attendance rate. Even this week’s trip, C suggested we wait til the day we travel to get the train tickets “just in case” and it sent me into a funk that I’ve become so reliably unreliable. But he’s right. I need to do some things when I can, instead of marking a day when Things Will Happen and hoping my body plays along if I just rest enough beforehand, because if it then pulls the rug out from under my feet instead I’ll have missed not just the thing I was resting for, but anything I could have done in the meantime! Obviously some things will be out of my control, like gigs and shows, and I will keep booking tickets with the naive optimism of someone pretending they’re not operating at a 50%+ dropout rate for anything outside their own postcode - after all if i don’t have a ticket I’m not going to go at all! But for the rest, the more flexible stuff, I need to take advantage of the good (less awful) days and do what I can when I can instead of attempting to hoard my energy for special occasions. It’s taken me long enough to work out that doing it that way just isn’t working anymore.
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#donut #doughnut #pills #meds #medication #chronicillness #fatigue #chronicfatigue #spoonie #spoonieproblems #ehlersdanlossyndrome #pots #heartfailure #dysautonomia #clowncarbody #changeofplan #peoplehopetribe #chronicpain #chronicloveclub #depression #acceptance #disability
Dessert. 🍩🍩🍩 I need to change the way I approach my (lack of) good days. This year, with fatigue and pain at an welcome high, I’ve been cancelling some plans in order to prioritise others, finding that I’m still not well enough despite my best efforts, and it’s been making me pretty miserable as a result. Social gatherings missed, marches prepared for and missed, events happening without me there and the tickets are still mocking me from my shelf for it. And don’t get me started on my therapy attendance rate. Even this week’s trip, C suggested we wait til the day we travel to get the train tickets “just in case” and it sent me into a funk that I’ve become so reliably unreliable. But he’s right. I need to do some things when I can, instead of marking a day when Things Will Happen and hoping my body plays along if I just rest enough beforehand, because if it then pulls the rug out from under my feet instead I’ll have missed not just the thing I was resting for, but anything I could have done in the meantime! Obviously some things will be out of my control, like gigs and shows, and I will keep booking tickets with the naive optimism of someone pretending they’re not operating at a 50%+ dropout rate for anything outside their own postcode - after all if i don’t have a ticket I’m not going to go at all! But for the rest, the more flexible stuff, I need to take advantage of the good (less awful) days and do what I can when I can instead of attempting to hoard my energy for special occasions. It’s taken me long enough to work out that doing it that way just isn’t working anymore. 🧡 #donut  #doughnut  #pills  #meds  #medication  #chronicillness  #fatigue  #chronicfatigue  #spoonie  #spoonieproblems  #ehlersdanlossyndrome  #pots  #heartfailure  #dysautonomia  #clowncarbody  #changeofplan  #peoplehopetribe  #chronicpain  #chronicloveclub  #depression  #acceptance  #disability 
CLC MEMBER FEATURE: Hello everyone! My name is Rachel, and I am 24 years old. I was diagnosed with Irritable Bowel Syndrome at the age of 13, Interstitial Cystitis at the age of 22, and Fibromyalgia at the age of 23.
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All of my chronic illnesses present themselves as invisible illnesses in my body. Unless you are close to me, live with me, or work closely with me, you would never know that I was chronically ill. I am able-body passing. The ways my illnesses have presented themselves delayed my later diagnoses. I was constantly told that I was too young, I wouldn't be functioning, or that I wouldn't be able to the bare the pain if I truly had the illnesses I'd bring up to doctors. It took years for me to get the proper testing and care I needed, but I never gave up on fighting for my health.
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I go to the bathroom 20-50 times a day. If I am not work, I am in bed. I have to save all of my spoons to socialize, or to see friends/family. I panic when I am somewhere with out a heating pad or ice pack. I miss out on large portions of my life to sleep. I always feel like I have a UTI and the stomach flu, always. I am thousands of dollars in debt in medical bills. None of these experiences can be seen when looking at me. None of these experiences can be seen through social media.
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I want everyone with invisible chronic illness to know that they are valid. I believe your pain. I KNOW its real. I KNOW your fight is constant and debilitating. It is okay to rest and take care of yourself when people don't understand. It is okay to not be okay, and to do what you need to do for you.
#chronicloveclub
CLC MEMBER FEATURE: Hello everyone! My name is Rachel, and I am 24 years old. I was diagnosed with Irritable Bowel Syndrome at the age of 13, Interstitial Cystitis at the age of 22, and Fibromyalgia at the age of 23. • All of my chronic illnesses present themselves as invisible illnesses in my body. Unless you are close to me, live with me, or work closely with me, you would never know that I was chronically ill. I am able-body passing. The ways my illnesses have presented themselves delayed my later diagnoses. I was constantly told that I was too young, I wouldn't be functioning, or that I wouldn't be able to the bare the pain if I truly had the illnesses I'd bring up to doctors. It took years for me to get the proper testing and care I needed, but I never gave up on fighting for my health. • I go to the bathroom 20-50 times a day. If I am not work, I am in bed. I have to save all of my spoons to socialize, or to see friends/family. I panic when I am somewhere with out a heating pad or ice pack. I miss out on large portions of my life to sleep. I always feel like I have a UTI and the stomach flu, always. I am thousands of dollars in debt in medical bills. None of these experiences can be seen when looking at me. None of these experiences can be seen through social media. • I want everyone with invisible chronic illness to know that they are valid. I believe your pain. I KNOW its real. I KNOW your fight is constant and debilitating. It is okay to rest and take care of yourself when people don't understand. It is okay to not be okay, and to do what you need to do for you. #chronicloveclub 
It’s official.... port surgery is a go!💉After doing Infusions for as long as I have been, my veins are tired. It’s taking up to six tries to start an iv, and I’ve even memorized where all my valves are. This is something I never thought I would be excited about, but knowing that there will be no more fishing for veins makes me very happy. 
Being able to do my Infusions from home will also be a big help. Currently I am driving 50 minuets twice a week for my infusions, and it’s very exhausting, especially living on limited energy. As much as I love the staff at the infusion clinic, being at home will be a big help to me! 
For those of you with ports, what advice do you have? •
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#POTS #posturalorthostatictachycardiasyndrome #dysautonomia #arrythmia #gastroparesis #fibromyalgia #chronicpain #chronicpainwarrior #chronicloveclub #disability #invisibleillness #invisibledisability #notalldisabilitiesarevisable #spoonie
It’s official.... port surgery is a go!💉After doing Infusions for as long as I have been, my veins are tired. It’s taking up to six tries to start an iv, and I’ve even memorized where all my valves are. This is something I never thought I would be excited about, but knowing that there will be no more fishing for veins makes me very happy. Being able to do my Infusions from home will also be a big help. Currently I am driving 50 minuets twice a week for my infusions, and it’s very exhausting, especially living on limited energy. As much as I love the staff at the infusion clinic, being at home will be a big help to me! For those of you with ports, what advice do you have? • • • • #POTS  #posturalorthostatictachycardiasyndrome  #dysautonomia  #arrythmia  #gastroparesis  #fibromyalgia  #chronicpain  #chronicpainwarrior  #chronicloveclub  #disability  #invisibleillness  #invisibledisability  #notalldisabilitiesarevisable  #spoonie 
I call this a “sick-ie”: A selfie that feels like sh*t. Sometimes it takes every last bit of energy to show up for our responsibilities when flares happen. This is my third round of treatment for SIBO (small intestine bacterial overgrowth) in two years. I try to live with the debilitating gut symptoms until they become intolerable enough that I’m willing to deal with the side effects of antibiotics. Today those side effects include bone aching fatigue, nausea, and mild vertigo. But I needed to get to my office in Portland so I boarded the 4 hour train from Seattle as I do every week and here I am. No martyr just human and dealing and rolling as we do even when it hurts. I wanted to post this picture because a stranger just gave me a compliment and my first instinct was to say “girl pull up a chair and let me tell you how it really is.” Please don’t be fooled by appearances. Everyone is going through something and just because that person is having a good hair day, or is smiling, or shows up for work, etc. doesn’t mean that they don’t have problems you know nothing about. Be kind. Don’t assume. Don’t waste your time being jealous. Instead, look in every nook and corner of the life you’ve been given for places you might improve. Find beauty in something new even if nothing “seems” beautiful. I promise you’ll find something. My beautiful moment today was sitting on the floor with an old friend and colleague in their office and sharing a coffee and a very brief nap. It’s a privilege to be able to hold space and be vulnerable with someone without fear of judgment. To be known and loved by someone even when you feel your least lovable is a gift. So this “sickie” is actually me risking connection with you and I encourage you to find the beauty in your hurting and vulnerable parts. They need you. We need you.
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#ptsd #trauma #chronicillness #invisibleillness #sibo #eds #pots #cancer #anxiety #depression #panic #vulnerability #chronicfatigue #healing #mindfulness #selfcare #encouragerssociety #themightysite #chronicloveclub #sickie #riskingconnection
I call this a “sick-ie”: A selfie that feels like sh*t. Sometimes it takes every last bit of energy to show up for our responsibilities when flares happen. This is my third round of treatment for SIBO (small intestine bacterial overgrowth) in two years. I try to live with the debilitating gut symptoms until they become intolerable enough that I’m willing to deal with the side effects of antibiotics. Today those side effects include bone aching fatigue, nausea, and mild vertigo. But I needed to get to my office in Portland so I boarded the 4 hour train from Seattle as I do every week and here I am. No martyr just human and dealing and rolling as we do even when it hurts. I wanted to post this picture because a stranger just gave me a compliment and my first instinct was to say “girl pull up a chair and let me tell you how it really is.” Please don’t be fooled by appearances. Everyone is going through something and just because that person is having a good hair day, or is smiling, or shows up for work, etc. doesn’t mean that they don’t have problems you know nothing about. Be kind. Don’t assume. Don’t waste your time being jealous. Instead, look in every nook and corner of the life you’ve been given for places you might improve. Find beauty in something new even if nothing “seems” beautiful. I promise you’ll find something. My beautiful moment today was sitting on the floor with an old friend and colleague in their office and sharing a coffee and a very brief nap. It’s a privilege to be able to hold space and be vulnerable with someone without fear of judgment. To be known and loved by someone even when you feel your least lovable is a gift. So this “sickie” is actually me risking connection with you and I encourage you to find the beauty in your hurting and vulnerable parts. They need you. We need you. . . #ptsd  #trauma  #chronicillness  #invisibleillness  #sibo  #eds  #pots  #cancer  #anxiety  #depression  #panic  #vulnerability  #chronicfatigue  #healing  #mindfulness  #selfcare  #encouragerssociety  #themightysite  #chronicloveclub  #sickie  #riskingconnection 
🌿 Visited Chinese Medicine 2000 in Sydenham which was so relaxing.
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I went and spoke to a wonderful lady who recommended I have 6 sessions of acupuncture to help with my chronic back pain and some other issues.
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The right side of my lower back was swollen and sore but after one session it feels so relaxed.
My upper back and neck also feels great!
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I tried acupuncture for my chronic back pain 11 years ago and it helped me for an hour then came back, but now I feel more benefits from acupuncture including settling my stomach and anxiety.
I recommend trying acupuncture and alternative healing methods even if it hasn’t worked for you before. 
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#acupuncture #selfhealing #awarecauses @awarecauses #endometriosis #chineseherbalmedicine #teetotaler #chronicloveclub #autoimmune #vegan #influencermarketing #endosister #lupus #fibromyalgia #iamthankful #spoonie #pinaybeauty #microblog #womenwithendometriosis #londonliving #painmanagement #flareup #se26 #supportlocalbusinesses #youcandothis #nottheendome
🌿 Visited Chinese Medicine 2000 in Sydenham which was so relaxing. • I went and spoke to a wonderful lady who recommended I have 6 sessions of acupuncture to help with my chronic back pain and some other issues. • The right side of my lower back was swollen and sore but after one session it feels so relaxed. My upper back and neck also feels great! • I tried acupuncture for my chronic back pain 11 years ago and it helped me for an hour then came back, but now I feel more benefits from acupuncture including settling my stomach and anxiety. I recommend trying acupuncture and alternative healing methods even if it hasn’t worked for you before. S. X • #acupuncture  #selfhealing  #awarecauses  @awarecauses #endometriosis  #chineseherbalmedicine  #teetotaler  #chronicloveclub  #autoimmune  #vegan  #influencermarketing  #endosister  #lupus  #fibromyalgia  #iamthankful  #spoonie  #pinaybeauty  #microblog  #womenwithendometriosis  #londonliving  #painmanagement  #flareup  #se26  #supportlocalbusinesses  #youcandothis  #nottheendome 
Our lil beach holiday 💕
Our lil beach holiday 💕
bag change day!!🙌🏻
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i like to get into a routine with my bag changes, but this new stoma has been a little unpredictable. although it is MUCH easier to change than my first loop ileostomy. even though i only had 3 months with a functioning j-pouch, bag changes still feel so new to me. it’s crazy to think that a 3 month break could feel like forever. nevertheless i’m starting to feel a little bit normal again, and this is starting to feel less like a crazy nightmare and more like my new reality!
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i’ve yet to change this new stoma by myself, still requiring the nurses and my amazing mom to help me out. i went back to my old hollister products, and they’ve been doing quite well with my stoma, although my skin seems to be getting a little itchy and irritated. i’m very opposed to change, seeing as in 2 years of having an ostomy, i used all the same products LOL, but i’m looking to open up my options😊 i’d love to hear your opinions and experiences on ostomy products, and how they’ve helped you!!😌💜
#ibdawareness #ostomy #ibd #colectomy #colitis #ileostomybag #ileostomy #stoma #bagchangeday #ostomate #ostomyawareness #chronicillness #chronicloveclub #chronicillnesswarrior #painisstrength #painistemporary
bag change day!!🙌🏻 • i like to get into a routine with my bag changes, but this new stoma has been a little unpredictable. although it is MUCH easier to change than my first loop ileostomy. even though i only had 3 months with a functioning j-pouch, bag changes still feel so new to me. it’s crazy to think that a 3 month break could feel like forever. nevertheless i’m starting to feel a little bit normal again, and this is starting to feel less like a crazy nightmare and more like my new reality! • i’ve yet to change this new stoma by myself, still requiring the nurses and my amazing mom to help me out. i went back to my old hollister products, and they’ve been doing quite well with my stoma, although my skin seems to be getting a little itchy and irritated. i’m very opposed to change, seeing as in 2 years of having an ostomy, i used all the same products LOL, but i’m looking to open up my options😊 i’d love to hear your opinions and experiences on ostomy products, and how they’ve helped you!!😌💜 #ibdawareness  #ostomy  #ibd  #colectomy  #colitis  #ileostomybag  #ileostomy  #stoma  #bagchangeday  #ostomate  #ostomyawareness  #chronicillness  #chronicloveclub  #chronicillnesswarrior  #painisstrength  #painistemporary 
I wear your grandmas clothes, I look incredible, I’m in this kick ass floral top from my favourite charity shop. .
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Currently watching lots of Steven universe, eating all the sweet things and dreaming. 💖
I wear your grandmas clothes, I look incredible, I’m in this kick ass floral top from my favourite charity shop. . . Currently watching lots of Steven universe, eating all the sweet things and dreaming. 💖
One year ago, when @sleepinthegardn asked her fans to open up about a struggle in our lives for an opportunity to join her at her screening of @feedthemovie, I had no idea I was about to become part of a community full of support, love, and encouragement. Through my journey of flyingthroughit this past year, I have learned to open up about some of my hardest struggles, as well as share and appreciate my victories, both big and small. Thank you, Troian, for bravely sharing a piece of your own journey through #feedthemovie and for showing me the side of @instagram that is full of people reaching out to one another, rather than a highlight reel of vacations and trendy coffee shops. I can’t wait to continue building my community and exploring my honest emotions on this page. I was scared to open up, but now I could never turn back .
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#feedthemovie #eds #ehlersdanlos #zebrastrong #zebrawarrior #dysautonomia #potssyndrome #hypermobility #chronicpain #chronicfatigue #eatingdisorderrecovery #neda #spoonie #invisibleillness #butyoudontlooksick #chronicloveclub #chronicwarrior #community
One year ago, when @sleepinthegardn asked her fans to open up about a struggle in our lives for an opportunity to join her at her screening of @feedthemovie, I had no idea I was about to become part of a community full of support, love, and encouragement. Through my journey of flyingthroughit this past year, I have learned to open up about some of my hardest struggles, as well as share and appreciate my victories, both big and small. Thank you, Troian, for bravely sharing a piece of your own journey through #feedthemovie  and for showing me the side of @instagram that is full of people reaching out to one another, rather than a highlight reel of vacations and trendy coffee shops. I can’t wait to continue building my community and exploring my honest emotions on this page. I was scared to open up, but now I could never turn back . . . #feedthemovie  #eds  #ehlersdanlos  #zebrastrong  #zebrawarrior  #dysautonomia  #potssyndrome  #hypermobility  #chronicpain  #chronicfatigue  #eatingdisorderrecovery  #neda  #spoonie  #invisibleillness  #butyoudontlooksick  #chronicloveclub  #chronicwarrior  #community 
Showing off a few of the purple marks from my allergy test! I did 99 in one go (both scratch and needle). Also yes I did go to Kroger like this 😅
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#posturalorthostatictachycardiasyndrome #chronicallyill #chronicillness #invisibleillness #butyoudontlooksick #pots #potsie #dysautonomia #spoonie #chronicillnesswarrior #peoplehopetribe #gastroparesis #chronicpain #chronicfatigue #chronicallyfabulous #chronicloveclub
"Start where you are, Use what you have, Do What you can."-- . (I'm adding)"Help, learn & Inspire Others with your experiences."
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⭐ 5.5 miles (1:10:03 | 12:44 pace)🏃 with Achilles Int'l Colorado. Kerry & I are planning on running a Half Marathon together this fall. Kerry (white shirt) T1D Blind Runner also & 🏃w/ Crosby -guide dog. We are learning to 🏃/ pace together & monitor our BG/Sugars, myself, defensive , various🏃 positions, calling out stride. Cadence, terrain changes, shielding our right side. Morgan was tonight's guide & I was the rear guard. I never knew there was so much to guide running & am glad to be 🏃together with Kerry in this 2018 Journey for raising Awareness & Inspiring Hope for All! Raising the Bar to a whole new level!
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It may take longer but it gets done! It maybe harder but we give it our best! It's not glorious or easy. If it was; Everyone would do it & it'd be in the headlines.💪🏁
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@beyondtype1
@beyondtype1daily
@chronicloveclub
@c3fit_usa
@runcolfax
@typeonerun

#runtogether #dothat #worktogether 
#RaiseAwareness #blindness #RunColfax
#achillesinternational #motivationquotes #RunCheweyRun #guiderunner #guidedog #togetherwearestronger #livebeyond #T1D #Migraines #beyondtype1 #dexcom #JDRF #TypeOneRun #Diabadass #13point1 #runshots #rundenver #washpark #GoAchilles #c3fit_usa #chronicloveclub #theunchargeables #instarunners #run4life
"Start where you are, Use what you have, Do What you can."-- . (I'm adding)"Help, learn & Inspire Others with your experiences." . . ⭐ 5.5 miles (1:10:03 | 12:44 pace)🏃 with Achilles Int'l Colorado. Kerry & I are planning on running a Half Marathon together this fall. Kerry (white shirt) T1D Blind Runner also & 🏃w/ Crosby -guide dog. We are learning to 🏃/ pace together & monitor our BG/Sugars, myself, defensive , various🏃 positions, calling out stride. Cadence, terrain changes, shielding our right side. Morgan was tonight's guide & I was the rear guard. I never knew there was so much to guide running & am glad to be 🏃together with Kerry in this 2018 Journey for raising Awareness & Inspiring Hope for All! Raising the Bar to a whole new level! ======== It may take longer but it gets done! It maybe harder but we give it our best! It's not glorious or easy. If it was; Everyone would do it & it'd be in the headlines.💪🏁 . . . . . . @beyondtype1 @beyondtype1daily @chronicloveclub @c3fit_usa @runcolfax @typeonerun #runtogether  #dothat  #worktogether  #RaiseAwareness  #blindness  #RunColfax  #achillesinternational  #motivationquotes  #RunCheweyRun  #guiderunner  #guidedog  #togetherwearestronger  #livebeyond  #T1D  #Migraines  #beyondtype1  #dexcom  #JDRF  #TypeOneRun  #Diabadass  #13point1  #runshots  #rundenver  #washpark  #GoAchilles  #c3fit_usa  #chronicloveclub  #theunchargeables  #instarunners  #run4life 
| LAUGH| "Like a welcome summer rain, humor may suddenly cleanse and cool the earth, the air and you." - Langston Hughes"
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▶A joyful heart is good medicine, but a crushed spirit dries up the bones.
Proverbs 17:22 ESV .
▶PD. Picture of women having a deep belly laugh with her eyes shut. Photo caption reads: "Every time you are able to find humor in a difficult situation, you win" ・・・
📷 @sharingsolace
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 #griefsupport #grieving #humor #itsokaytonotbeokay #itsokaytocry #loss #griefjourney #healingafterloss  #keepgoing #lifeafterloss 
#ChronicGirlGang #themightysite #chronicloveclub #thespooniesisterhood
| LAUGH| "Like a welcome summer rain, humor may suddenly cleanse and cool the earth, the air and you." - Langston Hughes" . ▶A joyful heart is good medicine, but a crushed spirit dries up the bones. Proverbs 17:22 ESV . ▶PD. Picture of women having a deep belly laugh with her eyes shut. Photo caption reads: "Every time you are able to find humor in a difficult situation, you win" ・・・ 📷 @sharingsolace • • • #griefsupport  #grieving  #humor  #itsokaytonotbeokay  #itsokaytocry  #loss  #griefjourney  #healingafterloss  #keepgoing  #lifeafterloss  #ChronicGirlGang  #themightysite  #chronicloveclub  #thespooniesisterhood 
I’m not going to lie, it was a big deal today! Celebrate the little victories, like getting out of bed! 📷: @nateinthewild #chronicloveclub
I’m not going to lie, it was a big deal today! Celebrate the little victories, like getting out of bed! 📷: @nateinthewild #chronicloveclub 
“These past couple of weeks have been a deep valley for me, but...the river never flows on the mountain peaks, my friends...
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When I start to feel my bladder, my dark passenger (totally ripping this off from Dexter, except I don’t kill people, thankfully) is suddenly there in the back seat.
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He starts telling me things like, “this is going to ruin your life again”,
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or “you got over your last flare quickly, but this time you won’t”
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or “you will never have a handle on your anxiety and this will be a perpetual rolling down the hill to your infinite doom on the other side”. ...
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My dark passenger gets a tad bit dramatic. ...
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I still need to allow myself to grieve over the fact that even though life is so manageable and I can live it well, I will have to deal with this condition forever.
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We can’t stay there in the grief though. ...
If we [do], we give the dark passenger way too much control, and before we know it, we’re the ones in the back seat, trying to tell him where to go, but our screams come out as whispers, and it’s no longer us driving at all, but him, along with our doubts and our fears and this is not how I want you to live your one life, friend.” Excerpt from How To Survive a Chronic Illness Flare which you can find by heading over to RiverandQuill.com (should be the first thing that pops up). ...
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#chronicillness #interstitialcystitis #IC #heal #healing #hopeforhealing #spoonie #spoonies #encouragement #hope #justkeepswimming #keepgoing #ikeepgoing #instagood #instahope #inspiration #inspired #writing #writingblog #writersofinstagram #chronicblogs #autoimmune #FF #JJ #chronicloveclub #invisibleillness #butyoudontlooksick #flare
“These past couple of weeks have been a deep valley for me, but...the river never flows on the mountain peaks, my friends... ... ... When I start to feel my bladder, my dark passenger (totally ripping this off from Dexter, except I don’t kill people, thankfully) is suddenly there in the back seat. ... ... He starts telling me things like, “this is going to ruin your life again”, ... ... or “you got over your last flare quickly, but this time you won’t” ... ... or “you will never have a handle on your anxiety and this will be a perpetual rolling down the hill to your infinite doom on the other side”. ... ... My dark passenger gets a tad bit dramatic. ... ... I still need to allow myself to grieve over the fact that even though life is so manageable and I can live it well, I will have to deal with this condition forever. ... ... We can’t stay there in the grief though. ... If we [do], we give the dark passenger way too much control, and before we know it, we’re the ones in the back seat, trying to tell him where to go, but our screams come out as whispers, and it’s no longer us driving at all, but him, along with our doubts and our fears and this is not how I want you to live your one life, friend.” Excerpt from How To Survive a Chronic Illness Flare which you can find by heading over to RiverandQuill.com (should be the first thing that pops up). ... ... ... ... ... ... ... ... ... ... ... ... #chronicillness  #interstitialcystitis  #IC  #heal  #healing  #hopeforhealing  #spoonie  #spoonies  #encouragement  #hope  #justkeepswimming  #keepgoing  #ikeepgoing  #instagood  #instahope  #inspiration  #inspired  #writing  #writingblog  #writersofinstagram  #chronicblogs  #autoimmune  #FF  #JJ  #chronicloveclub  #invisibleillness  #butyoudontlooksick  #flare 
The not so commonly spoken side of surviving multiple life-threatening events...failing at life afterwards. Getting overwhelmed to the point where you just shut down completely. Going 2 months without answering a single phone call. And then crying every time you try and pick up the phone. Worst of all, feeling like a complete failure because you can’t keep up with life. Your second chance at life. The life you didn’t think you’d live to see. Chronic illnesses are so much more than heated blankets, tubes sticking out every which way, and hospital stays. It’s dozens of phone calls every day with nurses, care coordinators [one for each insurance company and doctor’s office], infusion companies, DME companies, state agencies, staffing agencies, the list goes on. And when you don’t keep up, you lose everything. Everything. 
I’ve been crying all morning and I haven’t even made it to my first phone call: I’ve only sent two emails. But I will conquer this mess I’ve created and I will do so today. Partly because I’m bribing myself with something I’ve been wanting for a long time, but also partly because I can’t keep going like this. This isn’t me. This is the PTSD, the trauma, the anxiety. I will conquer because I am #joyfullyrare.
The not so commonly spoken side of surviving multiple life-threatening events...failing at life afterwards. Getting overwhelmed to the point where you just shut down completely. Going 2 months without answering a single phone call. And then crying every time you try and pick up the phone. Worst of all, feeling like a complete failure because you can’t keep up with life. Your second chance at life. The life you didn’t think you’d live to see. Chronic illnesses are so much more than heated blankets, tubes sticking out every which way, and hospital stays. It’s dozens of phone calls every day with nurses, care coordinators [one for each insurance company and doctor’s office], infusion companies, DME companies, state agencies, staffing agencies, the list goes on. And when you don’t keep up, you lose everything. Everything. I’ve been crying all morning and I haven’t even made it to my first phone call: I’ve only sent two emails. But I will conquer this mess I’ve created and I will do so today. Partly because I’m bribing myself with something I’ve been wanting for a long time, but also partly because I can’t keep going like this. This isn’t me. This is the PTSD, the trauma, the anxiety. I will conquer because I am #joyfullyrare .
I talk about acceptance on here a lot, but if Michael J. Fox says it, it's gotta give it a little more leverage, right? 😉
I once saw a doctor I had never met with before and he asked how I'm doing with everything. I told him that at first I was sad for a while but once I accepted that I was sick, I've been much better. He looked at me like I had 3 heads, and the questions started pouring out. "WHAT? You know, you should think positive, right? Why did you just accept this disease? Are you depressed?" STOP, PLEASE haha. I calmly explained to him that I used to go to bed every night praying I'd feel better the next day, and every morning I didn't. This is why I struggled with work for so long and stressed almost every day about getting better. Once I accepted the fact that OK...I am sick, but I am going to do everything I can to get better and am hopeful that I will...the stress went away.
Sometimes when I tell people this, it's hard for them to understand, and that's fine. This is the way I chose to cope with my illness, and it works for me. It allows me to not feel pressure that I used to put on myself to feel better immediately. I KNOW this has helped me feel better and I’m thankful everyday that I choose to accept my illnesses.
I talk about acceptance on here a lot, but if Michael J. Fox says it, it's gotta give it a little more leverage, right? 😉 I once saw a doctor I had never met with before and he asked how I'm doing with everything. I told him that at first I was sad for a while but once I accepted that I was sick, I've been much better. He looked at me like I had 3 heads, and the questions started pouring out. "WHAT? You know, you should think positive, right? Why did you just accept this disease? Are you depressed?" STOP, PLEASE haha. I calmly explained to him that I used to go to bed every night praying I'd feel better the next day, and every morning I didn't. This is why I struggled with work for so long and stressed almost every day about getting better. Once I accepted the fact that OK...I am sick, but I am going to do everything I can to get better and am hopeful that I will...the stress went away. Sometimes when I tell people this, it's hard for them to understand, and that's fine. This is the way I chose to cope with my illness, and it works for me. It allows me to not feel pressure that I used to put on myself to feel better immediately. I KNOW this has helped me feel better and I’m thankful everyday that I choose to accept my illnesses.
Looking forward to spending more time yogaing on the slackline. Too much muggle sickness recently to get out... so here is a picture of me hiding in a tree! .
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#imatree #slackline #slacklife #slacklove #slackgirl #yogaslackers #yogaeverydamnday #circuseverydamnday #circus #getoutside #spoonie #mugglesick #cfsme #myalgicencephalomyelitis #tree #nature #getoutsideandplay #spooniesisters #butyoudontlooksick #chronicloveclub #amsterdam #girlslovetravel #wanderlust #missingthebeach #exploreamsterdam
Looking forward to spending more time yogaing on the slackline. Too much muggle sickness recently to get out... so here is a picture of me hiding in a tree! . . . #imatree  #slackline  #slacklife  #slacklove  #slackgirl  #yogaslackers  #yogaeverydamnday  #circuseverydamnday  #circus  #getoutside  #spoonie  #mugglesick  #cfsme  #myalgicencephalomyelitis  #tree  #nature  #getoutsideandplay  #spooniesisters  #butyoudontlooksick  #chronicloveclub  #amsterdam  #girlslovetravel  #wanderlust  #missingthebeach  #exploreamsterdam 
L A T E R S M E L B O U R N E 🙋🏻‍♀️
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I am ready to sleep for the next 13 hours 😴 bask in the sun and not think about the fact I have another round of treatment when I get home #ocrevus
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I have really been dreading my next dose because my last round made me so sick and ain’t nobody got time to be down and out BUT I’m not going to worry, I’m just going to control what I can control and pray that next round does me proud 🙏🏽
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See you on the flip side ❤️
L A T E R S M E L B O U R N E 🙋🏻‍♀️ • I am ready to sleep for the next 13 hours 😴 bask in the sun and not think about the fact I have another round of treatment when I get home #ocrevus  • I have really been dreading my next dose because my last round made me so sick and ain’t nobody got time to be down and out BUT I’m not going to worry, I’m just going to control what I can control and pray that next round does me proud 🙏🏽 • See you on the flip side ❤️
!! IT’S GETTING REAL!! My logo is finalized and the countdown is officially on!! I’m launching my website and blog on Friday, July 27 where I’ll be inspiring you to live your best life! In the meantime, slide into my DMs to book your consult that will ignite your transformation today!#launchwhatyoulove
!! IT’S GETTING REAL!! My logo is finalized and the countdown is officially on!! I’m launching my website and blog on Friday, July 27 where I’ll be inspiring you to live your best life! In the meantime, slide into my DMs to book your consult that will ignite your transformation today!#launchwhatyoulove 
“It’s all about finding the calm in the chaos” 🧜‍♀️ Thumb update:

It piped back in all the way today. Yesterday it was just too swollen to be put all the way back in. 
Now it is feeling much better and is just a bit sore but I am going to be extra careful tonight and maybe tomorrow depending on how it feels. 
Other than that I don’t have any life updates because I stayed in my pajamas all day and took a nap.
“It’s all about finding the calm in the chaos” 🧜‍♀️ Thumb update: It piped back in all the way today. Yesterday it was just too swollen to be put all the way back in. Now it is feeling much better and is just a bit sore but I am going to be extra careful tonight and maybe tomorrow depending on how it feels. Other than that I don’t have any life updates because I stayed in my pajamas all day and took a nap.
🙋‍♀️This girl...
This girl has had a rough few years.
But 3 months post spinal fusion, the xrays look amazing and I am cleared to resume meds and life!
👑 It's going to take a while to find out what my new normal is. It will take a couple of months for the meds to become effective again. But I'm ready.
🤞 Crossing my fingers and toes that all of my other bulging discs stay put (and don't completely herniate).
🏊‍♀️ I can't wait to swim again.
💜 Thank you for your love and support throughout the madness of the last 4 years.
I'm still a mess of autoimmune and rheumatic diseases. I'm by no means ok.
But this part should hopefully be easier
👉 I'm little worried my family and friends may just think I'll be back to "normal" but this is just one part of my huge collection of illnesses. None of my conditions are gone. This may just make living with them a smidge easier. 👈 ⚠️TW- SCAR PHOTO⚠️
Exactly 3 months post op and I have finally been discharged from home nurse wound care!
The discoloured part at the top is from iodine that was painted on today and will be painted by my amazing husband for the next 2 days, but otherwise, it's all sealed up!
5 inches of scar, but scars are stories. Battle wounds. Proof that I am a tough as nails bad ass.
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Love you guys!
#spoonie #spoonielife #chronicpain #chronicillness #pain #arthritis #fibromyalgia #anxiety #depression #fightlikeawarrior #chronicloveclub #tuesday #spinalfusion #heal #recover #fight  #scar #postop
🙋‍♀️This girl... This girl has had a rough few years. But 3 months post spinal fusion, the xrays look amazing and I am cleared to resume meds and life! 👑 It's going to take a while to find out what my new normal is. It will take a couple of months for the meds to become effective again. But I'm ready. 🤞 Crossing my fingers and toes that all of my other bulging discs stay put (and don't completely herniate). 🏊‍♀️ I can't wait to swim again. 💜 Thank you for your love and support throughout the madness of the last 4 years. I'm still a mess of autoimmune and rheumatic diseases. I'm by no means ok. But this part should hopefully be easier 👉 I'm little worried my family and friends may just think I'll be back to "normal" but this is just one part of my huge collection of illnesses. None of my conditions are gone. This may just make living with them a smidge easier. 👈 ⚠️TW- SCAR PHOTO⚠️ Exactly 3 months post op and I have finally been discharged from home nurse wound care! The discoloured part at the top is from iodine that was painted on today and will be painted by my amazing husband for the next 2 days, but otherwise, it's all sealed up! 5 inches of scar, but scars are stories. Battle wounds. Proof that I am a tough as nails bad ass. 💪💜 Love you guys! #spoonie  #spoonielife  #chronicpain  #chronicillness  #pain  #arthritis  #fibromyalgia  #anxiety  #depression  #fightlikeawarrior  #chronicloveclub  #tuesday  #spinalfusion  #heal  #recover  #fight  #scar  #postop 
be easy now
take some time
to clear the rubble
in your head
and teach your heart
that some things
are better left unsaid
don’t worry
if sometimes things break
and change and burn
because these are things
to help you learn
and i know they’re still
a part of you 
inked into your skin
like a damaged tattoo
just don’t forget 
to love yourself too
—Courtney Peppernell—
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#poetry #pillowthoughts #lifelessons #liveauthentic
be easy now take some time to clear the rubble in your head and teach your heart that some things are better left unsaid don’t worry if sometimes things break and change and burn because these are things to help you learn and i know they’re still a part of you inked into your skin like a damaged tattoo just don’t forget to love yourself too —Courtney Peppernell— . . . . . #poetry  #pillowthoughts  #lifelessons  #liveauthentic 
EXCITING ANNOUNCEMENT!!!🤩🤩🤩🎉🎉🎉 || As you all know, I am obsessed with makeup and beauty influencers on YouTube. When I was very sick I went to a beauty convention held by @ipsy called Generation Beauty! This was an amazing time. I was in a wheelchair and on the max oxygen my concentrator could go to. Thankfully my friends took me and we had a blast. Well 3 weeks after I had this amazing experience, I got the call for my new lungs. I think this beauty convention really helped give me an extra oomph to keep going and increased my endorphins 💜
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Well I shared my story with the Ipsy Team and they have asked me to speak on a panel of 4 people to share my story and raise awareness for cystic fibrosis and organ donation this weekend in San Francisco 🤗🤗🤗 I am so excited and can’t wait to do this!!! If you are coming to Generation Beauty, I’ll be speaking at 130pm on Sunday!! 💜💜💜
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I’m thankful for this opportunity and am honored to be able to represent the chronic illness community!! We will record it so if you aren’t able to come see me in person, you’ll be able to view it virtually 😍😍😍
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Thank you for all the love and support, I really appreciate all the messages & comments 😘😘😘
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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 #Ipsy #generationbeautysf
EXCITING ANNOUNCEMENT!!!🤩🤩🤩🎉🎉🎉 || As you all know, I am obsessed with makeup and beauty influencers on YouTube. When I was very sick I went to a beauty convention held by @ipsy called Generation Beauty! This was an amazing time. I was in a wheelchair and on the max oxygen my concentrator could go to. Thankfully my friends took me and we had a blast. Well 3 weeks after I had this amazing experience, I got the call for my new lungs. I think this beauty convention really helped give me an extra oomph to keep going and increased my endorphins 💜 — Well I shared my story with the Ipsy Team and they have asked me to speak on a panel of 4 people to share my story and raise awareness for cystic fibrosis and organ donation this weekend in San Francisco 🤗🤗🤗 I am so excited and can’t wait to do this!!! If you are coming to Generation Beauty, I’ll be speaking at 130pm on Sunday!! 💜💜💜 — I’m thankful for this opportunity and am honored to be able to represent the chronic illness community!! We will record it so if you aren’t able to come see me in person, you’ll be able to view it virtually 😍😍😍 — Thank you for all the love and support, I really appreciate all the messages & comments 😘😘😘 — • • • #TiffGotLungs  #lungs4tiff  #cysticfibrosis  #cfawareness  #curecf  #doublelungtransplant  #cfirl  #saltycysters  #fibro  #love  #laugh  #hope  #donatelife  #organdonation  #dream  #donor  #65roses  #recycleyourself  #taylorswift  #thankful  #justbreathe  #spoonie  #chronicloveclub  #Ipsy  #generationbeautysf 
Watching the documentary about bear enthusiast Timothy Treadwell. Who was sadly eaten by a bear. Its really been wild...
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I also watched Ghost Stories today which was surprisingly good! I still prefer Hereditary and believe it is going to be the best horror movie of the year. .
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.  #posturalorthostatictachycardiasyndrome #chronicallyill #chronicillness #invisibleillness #butyoudontlooksick #pots #potsie #dysautonomia #spoonie #chronicillnesswarrior #peoplehopetribe #gastroparesis #chronicpain #chronicfatigue #chronicallyfabulous #chronicloveclub
Watching the documentary about bear enthusiast Timothy Treadwell. Who was sadly eaten by a bear. Its really been wild... . I also watched Ghost Stories today which was surprisingly good! I still prefer Hereditary and believe it is going to be the best horror movie of the year. . . . #posturalorthostatictachycardiasyndrome  #chronicallyill  #chronicillness  #invisibleillness  #butyoudontlooksick  #pots  #potsie  #dysautonomia  #spoonie  #chronicillnesswarrior  #peoplehopetribe  #gastroparesis  #chronicpain  #chronicfatigue  #chronicallyfabulous  #chronicloveclub 
CLC MEMBER FEATURE: Hi there! My name is Courtney, I’m 24 years old Canadian living with Neurofibromatosis. For those of you who don’t know, Neurofibromatosis is a multisystem genetic condition that causes tumours to grow on the ends of nerves.
When I was 13 years old I was diagnosed with an inoperable hypothalamic glioma, as well as scoliosis, hypopituitarism, growth hormone deficiency, chronic headaches and tumours were found in my abdomen, pelvis, arms, legs, and ear. I was devastated and tried to hide my diagnoses from my peers for fears of being judged and ostracized. This only caused further problems for me, and I developed major depression and anorexia.
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I struggled for 5 years with an eating disorder before I decided that my life was worth living. Those who have struggled with eating disorders know how painful, and how isolating they can be. I knew that I wanted more for my life, and I couldn’t achieve what I wanted if I was still struggling with anorexia.
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Although today I am eating disorder recovered, I do still have health struggles. I was recently diagnosed with osteopenia and learned that I would be on hormone replacement therapy for the rest of my life. I still struggle with chronic pain. Depression is still a beast that lurks in the shadows. But, I am happily living life. I practice as a Registered Nurse, and help run a not-for-profit organization supporting people living with Neurofibromatosis (we’re called @albertatumourfoundation if you want to check us out).
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Life with chronic illness isn’t always easy, but I firmly believe that everything I have been through has helped shape me into the person I am today. My best advice to anyone struggling with chronic illness is simply talk to people, you would be surprised how understanding most people are! Don’t go forth in this battle alone, there are so many people willing to love you and lift you up!
#chronicloveclub
CLC MEMBER FEATURE: Hi there! My name is Courtney, I’m 24 years old Canadian living with Neurofibromatosis. For those of you who don’t know, Neurofibromatosis is a multisystem genetic condition that causes tumours to grow on the ends of nerves. When I was 13 years old I was diagnosed with an inoperable hypothalamic glioma, as well as scoliosis, hypopituitarism, growth hormone deficiency, chronic headaches and tumours were found in my abdomen, pelvis, arms, legs, and ear. I was devastated and tried to hide my diagnoses from my peers for fears of being judged and ostracized. This only caused further problems for me, and I developed major depression and anorexia. • I struggled for 5 years with an eating disorder before I decided that my life was worth living. Those who have struggled with eating disorders know how painful, and how isolating they can be. I knew that I wanted more for my life, and I couldn’t achieve what I wanted if I was still struggling with anorexia. • Although today I am eating disorder recovered, I do still have health struggles. I was recently diagnosed with osteopenia and learned that I would be on hormone replacement therapy for the rest of my life. I still struggle with chronic pain. Depression is still a beast that lurks in the shadows. But, I am happily living life. I practice as a Registered Nurse, and help run a not-for-profit organization supporting people living with Neurofibromatosis (we’re called @albertatumourfoundation if you want to check us out). • Life with chronic illness isn’t always easy, but I firmly believe that everything I have been through has helped shape me into the person I am today. My best advice to anyone struggling with chronic illness is simply talk to people, you would be surprised how understanding most people are! Don’t go forth in this battle alone, there are so many people willing to love you and lift you up! #chronicloveclub 
I am SOOOOO sore today. Work is so stressful and I carry the stress in my neck, arms, fingers and upper back 😵 I need a massage! But cant afford one!! Boo!!! We just bought a house a year ago and have some debt from putting it all together. Um yah....I planted about 45 perennials and 10 annuals..Our yard was horrible when we moved in...anyways here is a beautiful pic of my yellow daisies! 😊🌻 #nofilter 
#daisies #flowers #garden #newhome #uctd #microscopiccolitis #anxiety #depression #raynaudsdisease #hypermobilejoints #heartmurmur #siccasyndrome #spoonie #invisibleillness #autoimmunedisease #chronic #chronicillness #chronicpain #pain #fatigue #chronicloveclub
I am SOOOOO sore today. Work is so stressful and I carry the stress in my neck, arms, fingers and upper back 😵 I need a massage! But cant afford one!! Boo!!! We just bought a house a year ago and have some debt from putting it all together. Um yah....I planted about 45 perennials and 10 annuals..Our yard was horrible when we moved in...anyways here is a beautiful pic of my yellow daisies! 😊🌻 #nofilter  #daisies  #flowers  #garden  #newhome  #uctd  #microscopiccolitis  #anxiety  #depression  #raynaudsdisease  #hypermobilejoints  #heartmurmur  #siccasyndrome  #spoonie  #invisibleillness  #autoimmunedisease  #chronic  #chronicillness  #chronicpain  #pain  #fatigue  #chronicloveclub 
Extremely humid air today. Very difficult to breathe during this run today. But I finished it....that’s what matters. And I got some time with Itty Bitty in her stroller while I ran. So far, BG did well. Started at 116 with a banana before. Peaked at 140. Finished at 108. Had a ounce (literally-1oz) of OJ and rising at 130 now...all good though.
Extremely humid air today. Very difficult to breathe during this run today. But I finished it....that’s what matters. And I got some time with Itty Bitty in her stroller while I ran. So far, BG did well. Started at 116 with a banana before. Peaked at 140. Finished at 108. Had a ounce (literally-1oz) of OJ and rising at 130 now...all good though.
🐟 Lunch With @mazrazzle.
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Got to catch up with Maz recently at @eastputneytavern and had their grilled sea bass with fennel, orange, radish and parsley salad which was really nice, highly recommend if you’re in the South West London area.
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Seeing Maz makes me miss work so much.
S. X
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#missingwork #imissmydesk #digitalmarketing #spoonie #putney #sw15 #eastputneytavern #eastputney #fishdish #glutenfree #dairyfree #pescetarian #seabass #fibromyalgia #autoimmune #lupus #chronicloveclub #londonliving #teetotaler #painmanagement #endosister #womenwithendometriosis #iamthankful #influencermarketing #nottheendome 🌿
🐟 Lunch With @mazrazzle. • Got to catch up with Maz recently at @eastputneytavern and had their grilled sea bass with fennel, orange, radish and parsley salad which was really nice, highly recommend if you’re in the South West London area. • Seeing Maz makes me miss work so much. S. X • #missingwork  #imissmydesk  #digitalmarketing  #spoonie  #putney  #sw15  #eastputneytavern  #eastputney  #fishdish  #glutenfree  #dairyfree  #pescetarian  #seabass  #fibromyalgia  #autoimmune  #lupus  #chronicloveclub  #londonliving  #teetotaler  #painmanagement  #endosister  #womenwithendometriosis  #iamthankful  #influencermarketing  #nottheendome  🌿
Me and.... still me lol. Some days are better than others.
Me and.... still me lol. Some days are better than others.
No more braces! 😁 • My teeth (much like the rest of me) are a bit more complicated than most. They kept telling me, "Wow, you are such a good patient." My response, "I've gotten very good at rolling with life's punches."
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After 10 surgeries, daily pain and more failed experiments in and out of the lab than I can count, the last few years have taught me that, while many things are out of my control, how I respond is still my choice. And I choose joy! 💙 #ichoosejoy #relentlessjoy
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#braces #orthodontist #joy #choosejoy #relentlesspursuit #hydrocephalus #iih #intracranialhypertension #pseudotumor #shunt #etv #chronicloveclub #chronicillness #invisibleillness #fightlikeawarrior #chronicpain #headache #migraine #gradschool #medschool #futuremdphd #futuredoctor #student #doctor #research #science #experiment
No more braces! 😁 • My teeth (much like the rest of me) are a bit more complicated than most. They kept telling me, "Wow, you are such a good patient." My response, "I've gotten very good at rolling with life's punches." • After 10 surgeries, daily pain and more failed experiments in and out of the lab than I can count, the last few years have taught me that, while many things are out of my control, how I respond is still my choice. And I choose joy! 💙 #ichoosejoy  #relentlessjoy  • • • • • • #braces  #orthodontist  #joy  #choosejoy  #relentlesspursuit  #hydrocephalus  #iih  #intracranialhypertension  #pseudotumor  #shunt  #etv  #chronicloveclub  #chronicillness  #invisibleillness  #fightlikeawarrior  #chronicpain  #headache  #migraine  #gradschool  #medschool  #futuremdphd  #futuredoctor  #student  #doctor  #research  #science  #experiment 
(Was @spoonie.farmer )
Last night, in a hazy ‘my eyes are glued shut but my brain’s still awake’ kinda state, I had the idea of changing my username and loads of alternatives started popping into my head 🤦🏻‍♀️
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When I started this account, I wanted it to be the place where I could actually be open about all parts of my life, instead of filtering myself. It’s become somewhere I can share bits from my everyday life without worrying too much about boring folk with farming talk/health talk/sharing mini (or major) achievements etc.
Initially, my mind was absolutely blank when it came to thinking of a name and @spoonie.farmer was all I could come up with. But now I think @holls.world is more fitting, as like my life, this insta account is filled with a little bit of everything 🐮🐴🐶🐈🌾🍪♿️🌸
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Throwback photo to when my room was filled with pretty flowers and the outside world was green instead of a sad shade of brown 🙄
Hope everyone’s coping as well as possible in this heat! It’s thankfully been a bit cooler here today 😅 but if anyone has any spare rain please send it in the Yorkshire direction 🙌😄
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#invisibleillness #chronicillness #butyoudontlooksick #spoonie #chronicloveclub #spoonielife #chronicallyfabulous #myalgicencephalopathy
(Was @spoonie.farmer ) Last night, in a hazy ‘my eyes are glued shut but my brain’s still awake’ kinda state, I had the idea of changing my username and loads of alternatives started popping into my head 🤦🏻‍♀️ ~ When I started this account, I wanted it to be the place where I could actually be open about all parts of my life, instead of filtering myself. It’s become somewhere I can share bits from my everyday life without worrying too much about boring folk with farming talk/health talk/sharing mini (or major) achievements etc. Initially, my mind was absolutely blank when it came to thinking of a name and @spoonie.farmer was all I could come up with. But now I think @holls.world is more fitting, as like my life, this insta account is filled with a little bit of everything 🐮🐴🐶🐈🌾🍪♿️🌸 ~ Throwback photo to when my room was filled with pretty flowers and the outside world was green instead of a sad shade of brown 🙄 Hope everyone’s coping as well as possible in this heat! It’s thankfully been a bit cooler here today 😅 but if anyone has any spare rain please send it in the Yorkshire direction 🙌😄 . . . . . #invisibleillness  #chronicillness  #butyoudontlooksick  #spoonie  #chronicloveclub  #spoonielife  #chronicallyfabulous  #myalgicencephalopathy 
More #cannaparent love going to @themedicatedmama 💚💚💚
I have a severe coconut allergy in my house, so most products except for the ones I make myself are out... Luckily I found like-minded people, and I'm a huge supporter of small business! Go show this momma some love! 🤘 -femj81
#cannabiscommunity #cannabisfreedom #safer #saferthanpillsoralcohol #happycoffeechick #happysmartcoffee
#stopovermedicating #onelovetoker #bethechange #endthestigma #leadnotfollow #cannaparentscan #hydroponichippies #cannabisqueen #cannablissqueens #marijuanamadams #oovlife #happilyliving #chronicloveclub #thespooniesisterhood #hotlife710 #cannagram #upperleftusa #spokanestoners #awareness #goldenrule #sisu
#cannabisfreedom #hempfreedom #themedicatedmama
More #cannaparent  love going to @themedicatedmama 💚💚💚 I have a severe coconut allergy in my house, so most products except for the ones I make myself are out... Luckily I found like-minded people, and I'm a huge supporter of small business! Go show this momma some love! 🤘 -femj81 #cannabiscommunity  #cannabisfreedom  #safer  #saferthanpillsoralcohol  #happycoffeechick  #happysmartcoffee  #stopovermedicating  #onelovetoker  #bethechange  #endthestigma  #leadnotfollow  #cannaparentscan  #hydroponichippies  #cannabisqueen  #cannablissqueens  #marijuanamadams  #oovlife  #happilyliving  #chronicloveclub  #thespooniesisterhood  #hotlife710  #cannagram  #upperleftusa  #spokanestoners  #awareness  #goldenrule  #sisu  #cannabisfreedom  #hempfreedom  #themedicatedmama 
At times, fear can keep us from moving forward. We’ve all experienced the crippling effects of fear, but we will ALWAYS push through 📷: @life.with.three
#chronicloveclub
At times, fear can keep us from moving forward. We’ve all experienced the crippling effects of fear, but we will ALWAYS push through 📷: @life.with.three #chronicloveclub 
The picture on the left was the day before she was first admitted to the hospital and our journey began.... never in my wildest thoughts would I have imagined this is where we’d be today.

She has taught me so much about the human spirit and the determination to live life fully.  I’ve had my struggles in the past and this whole ordeal has put everything into perspective for me. Her positive outlook towards everything is unshakeable, even during the worst times she still tells us how she’s “the luckiest girl in the world!” She blows me away all the time.

This little one is tiny but mighty and I am blessed to be her momma.
The picture on the left was the day before she was first admitted to the hospital and our journey began.... never in my wildest thoughts would I have imagined this is where we’d be today. She has taught me so much about the human spirit and the determination to live life fully. I’ve had my struggles in the past and this whole ordeal has put everything into perspective for me. Her positive outlook towards everything is unshakeable, even during the worst times she still tells us how she’s “the luckiest girl in the world!” She blows me away all the time. This little one is tiny but mighty and I am blessed to be her momma.
July 17 · Tuesdy (Day -1) ·
Transplant day is tomorrow! Or maybe, it might be more like Thursday morning 🤷‍♀️ We found out today that my cells likely won't be shipped & approved through the James (OSU) until around 11:30pm tomorrow, which means that my transplant will likely happen in the early hours of Thursday morning. Most people think about the transplant process as a procedure, but I'll actually be awake for it (or possibly asleep)! They literally just bring in the stem cells and hang the bag like a typical blood infusion. In BMT, boring is a good sign that everything is going well. 🙌🏻
🌿But today is a rest day. Not much going on. I feel pretty exhausted, which is to be expected. Yesterday was a lot for me emotionally, because I was given a lot of different medications that all effected me in different ways. I went from being super sad & sobbing to manically happy in a little under two hours. But for now, I feel a little bit more stable. My liver & kidney tests came back normal, even if my bloodwork is slightly out of wack, which is a good sign. One more day ahead! Even if it's going to be a long one.🌻 So close ✌🏻
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#poements #bethematch #chronicloveclub #bonemarrow #invisibleillness #chronicillness #motivation #columbus #capfam #writing #poetrygram #writingcommunity #portrait #photojournalism #photography #excitement #hospitalglam #spectacular
July 17 · Tuesdy (Day -1) · Transplant day is tomorrow! Or maybe, it might be more like Thursday morning 🤷‍♀️ We found out today that my cells likely won't be shipped & approved through the James (OSU) until around 11:30pm tomorrow, which means that my transplant will likely happen in the early hours of Thursday morning. Most people think about the transplant process as a procedure, but I'll actually be awake for it (or possibly asleep)! They literally just bring in the stem cells and hang the bag like a typical blood infusion. In BMT, boring is a good sign that everything is going well. 🙌🏻 🌿But today is a rest day. Not much going on. I feel pretty exhausted, which is to be expected. Yesterday was a lot for me emotionally, because I was given a lot of different medications that all effected me in different ways. I went from being super sad & sobbing to manically happy in a little under two hours. But for now, I feel a little bit more stable. My liver & kidney tests came back normal, even if my bloodwork is slightly out of wack, which is a good sign. One more day ahead! Even if it's going to be a long one.🌻 So close ✌🏻 * * * * * * * * * * * * #poements  #bethematch  #chronicloveclub  #bonemarrow  #invisibleillness  #chronicillness  #motivation  #columbus  #capfam  #writing  #poetrygram  #writingcommunity  #portrait  #photojournalism  #photography  #excitement  #hospitalglam  #spectacular 
First picture... what would be just one month of injections when I was diagnosed at 7 and began working to stay alive every day.
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Second picture, despite an insulin pump site change, pricking my fingers about 5 times since last night, taking insulin, and not eating any carbs/drinking a ton of water, doing EVERYTHING my doctor says... and I’m still over the target range of 80-120. 🤬
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I’m strong as hell and I will get through this high sugar like I’ve gotten through every high sugar over the past 21 years as a type 1 diabetic... but man is it frustrating on days like this. ☹️
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If you know a type 1, hug them harder. We’re trained to make it seem to society like nothing is wrong. Some days it’s harder to live with the knowledge that we’re on borrowed time.
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MY TYPE ONE FRIENDS: What’s one thing you wish people without T1D knew?
First picture... what would be just one month of injections when I was diagnosed at 7 and began working to stay alive every day. • Second picture, despite an insulin pump site change, pricking my fingers about 5 times since last night, taking insulin, and not eating any carbs/drinking a ton of water, doing EVERYTHING my doctor says... and I’m still over the target range of 80-120. 🤬 • I’m strong as hell and I will get through this high sugar like I’ve gotten through every high sugar over the past 21 years as a type 1 diabetic... but man is it frustrating on days like this. ☹️ • If you know a type 1, hug them harder. We’re trained to make it seem to society like nothing is wrong. Some days it’s harder to live with the knowledge that we’re on borrowed time. • MY TYPE ONE FRIENDS: What’s one thing you wish people without T1D knew?
💔 My husband broke my heart last night...
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He said I do too much during the day.
He said I work myself too hard and I’m too tired in the evening. 
He said he gets a tired Sarah when he gets back from work and it isn’t fair. 
He asked me to do absolutely nothing today so he can get a non tired Sarah in the evening today.
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Ouch.
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I’m relaxing today in bed with my iPad and YouTube and maybe have a bubble bath.
I’ll be refreshed and ready for my husband when he gets home!
I’m glad he hasn’t bottled this up and just told me because this is hard for him too. 
He’s going through this with me.
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Please be aware that your partners and family may be suffering too because of your pain and anguish.
They want you to be healthy and back to normal as much as you do so it’s hard for them.
I am so thankful he said this to me last night.
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Hope you are doing well today.
I had quite a bad flare this morning but I’m medicated, had a coffee and now I feel much better and can relax.
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Thank you champs for always being there.
S. X
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#womenwithendometriosis #ambassador #healingprocess #chronicloveclub #autoimmune #endometriosis #fibromyalgia #anxiety #londonliving #influencermarketing #iamthankful #endowarrior #endosister #butyoudontlooksick #supportnetwork #iamhere #painmanagement #nottheendome #husbandgoals #ilovemyhusband #soinlove #support #loveislove #hesakeeper
💔 My husband broke my heart last night... • He said I do too much during the day. He said I work myself too hard and I’m too tired in the evening. He said he gets a tired Sarah when he gets back from work and it isn’t fair. He asked me to do absolutely nothing today so he can get a non tired Sarah in the evening today. • 💔 Ouch. • I’m relaxing today in bed with my iPad and YouTube and maybe have a bubble bath. I’ll be refreshed and ready for my husband when he gets home! I’m glad he hasn’t bottled this up and just told me because this is hard for him too. He’s going through this with me. • Please be aware that your partners and family may be suffering too because of your pain and anguish. They want you to be healthy and back to normal as much as you do so it’s hard for them. I am so thankful he said this to me last night. • Hope you are doing well today. I had quite a bad flare this morning but I’m medicated, had a coffee and now I feel much better and can relax. • Thank you champs for always being there. S. X • #womenwithendometriosis  #ambassador  #healingprocess  #chronicloveclub  #autoimmune  #endometriosis  #fibromyalgia  #anxiety  #londonliving  #influencermarketing  #iamthankful  #endowarrior  #endosister  #butyoudontlooksick  #supportnetwork  #iamhere  #painmanagement  #nottheendome  #husbandgoals  #ilovemyhusband  #soinlove  #support  #loveislove  #hesakeeper 
F R E M G A N G  O G  M E S T R I N G 
Dagen i går, 16 juli 2018 ble en stor merkedag for meg🙌. Jeg fikk bort bandasjer, kompresser, stomiplate og det permanente kateteret som har stått i stomien, gjennom nippelventilen og inn i reservoaret i 4 uker. I går førte jeg et stivt kateter inn i stomien, gjennom nippelventilen og inn til reservoaret for å tømme innholdet💩 i reservoaret ned i toalettet på egenhånd. Jeg fikk god veiledning av stomisykepleier og det ble en flott opplevelse der jeg endelig fikk gjøre alt selv. Det ble vellykket på første forsøk!😁 Siden det forsøket har jeg gjort dette alene og jeg begynner å bli fortrolig med prosedyren🙂 Nå føler jeg meg klar til hjemreise som mest sannsynlig blir på torsdag! 😀 
Bildet: Øverst, stomien til et kocks reservoar er flat og mindre enn når man har en vanlig ileo stomi. Under den største hvite bandasjen ligger stomien. Man trenger kun en bandasje over stomien når man har en kontinent ileo stomi (kocks reservoar).
På det nederste bildet ser du en stor absorberende blå bandasje som står over stomien mens kateteret står i for å samle opp avføring som kommer opp ved siden av kateteret i nippelventilen og opp av stomien. Her er kateteret festet til en urinpose slik at innholdet blir samlet opp i posen.

#fremgang #opplæring #veiledning #stomisykepleier #kocksreservoar #kontinentileostomi #stomi #reservoar #selvstendig #fortrolig #prosedyre #kateter #bandasje #kroppslige #forandringer #velvære #mestring #merkedag #getyourbellyout #chronicloveclub
F R E M G A N G O G M E S T R I N G Dagen i går, 16 juli 2018 ble en stor merkedag for meg🙌. Jeg fikk bort bandasjer, kompresser, stomiplate og det permanente kateteret som har stått i stomien, gjennom nippelventilen og inn i reservoaret i 4 uker. I går førte jeg et stivt kateter inn i stomien, gjennom nippelventilen og inn til reservoaret for å tømme innholdet💩 i reservoaret ned i toalettet på egenhånd. Jeg fikk god veiledning av stomisykepleier og det ble en flott opplevelse der jeg endelig fikk gjøre alt selv. Det ble vellykket på første forsøk!😁 Siden det forsøket har jeg gjort dette alene og jeg begynner å bli fortrolig med prosedyren🙂 Nå føler jeg meg klar til hjemreise som mest sannsynlig blir på torsdag! 😀 Bildet: Øverst, stomien til et kocks reservoar er flat og mindre enn når man har en vanlig ileo stomi. Under den største hvite bandasjen ligger stomien. Man trenger kun en bandasje over stomien når man har en kontinent ileo stomi (kocks reservoar). På det nederste bildet ser du en stor absorberende blå bandasje som står over stomien mens kateteret står i for å samle opp avføring som kommer opp ved siden av kateteret i nippelventilen og opp av stomien. Her er kateteret festet til en urinpose slik at innholdet blir samlet opp i posen. #fremgang  #opplæring  #veiledning  #stomisykepleier  #kocksreservoar  #kontinentileostomi  #stomi  #reservoar  #selvstendig  #fortrolig  #prosedyre  #kateter  #bandasje  #kroppslige  #forandringer  #velvære  #mestring  #merkedag  #getyourbellyout  #chronicloveclub 
my hips move broken metronome

i'd aspire to aspirate my fluid body pillows but they think i'll be afraid of the big needle

so they never offer . * [some disjointed thoughts about disability & dance] *
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#fibromyalgia #chronicpain  #fibrofighter #chronicpainwarrior #chronicpainsucks #fibrofierce #poetry
#poetsofinstagram #queerpoet #disabledpoet #chronicallyill #chronicloveclub #disabledpoets #disabledartist #disabledartists #transpoet #transpoets #nonbinary #montreal #picnikelectronik
my hips move broken metronome i'd aspire to aspirate my fluid body pillows but they think i'll be afraid of the big needle so they never offer . * [some disjointed thoughts about disability & dance] * ° ° ° ° ° ° ° ° ° #fibromyalgia  #chronicpain  #fibrofighter  #chronicpainwarrior  #chronicpainsucks  #fibrofierce  #poetry  #poetsofinstagram  #queerpoet  #disabledpoet  #chronicallyill  #chronicloveclub  #disabledpoets  #disabledartist  #disabledartists  #transpoet  #transpoets  #nonbinary  #montreal  #picnikelectronik 
// thankful for this gem of a friend (and for really good crème brûlée). ❤️ //
// thankful for this gem of a friend (and for really good crème brûlée). ❤️ //
Last Post Op Appointment 👃🏻👃🏻|| thankfully this appointment was not as traumatizing as the last post op appointment! My doctor cleaned out the rest of my nose. We got out chunks of stuff which ultimately made me feel WAY better! He said that my sinuses are looking great and after that clean up I should be good to go and come back in 2 months! I’m that weird person that wanted to see everything that came out 🙈 For some reason these kind of things fascinate me! 🙋🏼‍♀️ Sinus surgery was definitely not a walk in the park but I am happy that I have nice clear sinuses and no CF bacteria flourishing in them! We want to protect my new lungs and this surgery will do its job!🤗🤗🤗
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PS BIG ANNOUNCEMENT THIS WEEK COMING!! I cant wait to tell EVERYONE! Any Guesses?!?!? If you know about it, shhhh lol
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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 #Sinus #surgery
Last Post Op Appointment 👃🏻👃🏻|| thankfully this appointment was not as traumatizing as the last post op appointment! My doctor cleaned out the rest of my nose. We got out chunks of stuff which ultimately made me feel WAY better! He said that my sinuses are looking great and after that clean up I should be good to go and come back in 2 months! I’m that weird person that wanted to see everything that came out 🙈 For some reason these kind of things fascinate me! 🙋🏼‍♀️ Sinus surgery was definitely not a walk in the park but I am happy that I have nice clear sinuses and no CF bacteria flourishing in them! We want to protect my new lungs and this surgery will do its job!🤗🤗🤗 — PS BIG ANNOUNCEMENT THIS WEEK COMING!! I cant wait to tell EVERYONE! Any Guesses?!?!? If you know about it, shhhh lol • • • #TiffGotLungs  #lungs4tiff  #cysticfibrosis  #cfawareness  #curecf  #doublelungtransplant  #cfirl  #saltycysters  #fibro  #love  #laugh  #hope  #donatelife  #organdonation  #dream  #donor  #65roses  #recycleyourself  #taylorswift  #thankful  #justbreathe  #spoonie  #chronicloveclub  #Sinus  #surgery 
Normally I wouldn’t post something reveling like this but many people are self conscious about their bodies. Your scars, birth marks, stretch marks, rolls, and all make you unique. Own it, every little special mark that makes you beautifully you! Don’t be ashamed to show your beauty! - I am so surprised by the amount of support I am getting on my pictures! Thank you everyone! 💙🧡🎗🔩 #beautifulscars #beauty #scars #survivor #crps #hipdysplasia #calvinklein #disability #arie #warrior #seniorsunday #clc #chronicloveclub #warrior
Normally I wouldn’t post something reveling like this but many people are self conscious about their bodies. Your scars, birth marks, stretch marks, rolls, and all make you unique. Own it, every little special mark that makes you beautifully you! Don’t be ashamed to show your beauty! - I am so surprised by the amount of support I am getting on my pictures! Thank you everyone! 💙🧡🎗🔩 #beautifulscars  #beauty  #scars  #survivor  #crps  #hipdysplasia  #calvinklein  #disability  #arie  #warrior  #seniorsunday  #clc  #chronicloveclub  #warrior 
I never realized how much I use my “party tricks” thumb to do things until it was all swollen and bruised today. 
Hiking a pencil, holding a spoon, opening doors, getting dressed ... It doesn’t hurt to Bend it into a fist 👊 but straitening it is so painful. (It is the part where the thumb and the hand connect) It opens smoothly until it pops out. Sometimes it doesn’t have to be fully extended to need to be put back in its place. 
So my mom and I went out and got this thumb stabilizer and it seems to be not letting me straight it to popping  but more than that it reminds me that that thumb is going to hurt so don’t do anything dumb. 
The dentist appointment went well, meaning no cavities and it went as smoothly as it could go. 
I just really don’t like things in my mouth so there is always a bit of panic. 
I made my mom come with me and by her standards (she likes the dentist) it was not smooth. At least I don’t have to go back for 6 months 👍
I never realized how much I use my “party tricks” thumb to do things until it was all swollen and bruised today. Hiking a pencil, holding a spoon, opening doors, getting dressed ... It doesn’t hurt to Bend it into a fist 👊 but straitening it is so painful. (It is the part where the thumb and the hand connect) It opens smoothly until it pops out. Sometimes it doesn’t have to be fully extended to need to be put back in its place. So my mom and I went out and got this thumb stabilizer and it seems to be not letting me straight it to popping but more than that it reminds me that that thumb is going to hurt so don’t do anything dumb. The dentist appointment went well, meaning no cavities and it went as smoothly as it could go. I just really don’t like things in my mouth so there is always a bit of panic. I made my mom come with me and by her standards (she likes the dentist) it was not smooth. At least I don’t have to go back for 6 months 👍
CLC MEMBER FEATURE: My name is Abbey(27), I’m from Minnesota and I have cystic fibrosis.
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I was diagnosed at birth after having a meconium ileus (bowel obstruction). Growing up, I never perceived to have many challenges. The only major complication came in fourth grade when I had an intussusception where my intestine turned inside out. It wasn’t until right before my senior year that I had a hospitalization for my lungs. This hit me pretty hard. I was diagnosed with CF related diabetes when I was 19. Daily insulin shots suck, but they energize me to feel better. In recent years, my biggest struggles emerged. I started having regular hemoptysis (coughing up blood) causing many hospitalizations and even some surgeries. I had a port placed this year because my arm veins are scarred and we can’t access them with PICC lines. Honestly, the port has been the best thing to happen. It’s so easy for me to access. I go on IV’s about 3+ times a year. Sometimes for large periods of time which is annoying, but I have a pretty cool fanny pack to carry it around in.
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Luckily, I have the world’s best family and friends. They keep me strong help me through. I have 2 older brothers that are my rocks! One lives in California and visiting him is awesome. We go to Disney and Universal and it’s the best time! My other brother lives in Minnesota and is always there for everything. Family and their continued love makes life worthwhile.
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I’ve worked full time for 11 years at Red Robin Gourmet Burgers. I have a supportive boss that works with me on my health needs.  Work keeps me feeling normal, even when I have to be on IV’s.
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Tattoos are life! I get tattooed frequently and have many meaningful pieces for my CF. It’s relaxing and therapeutic, helping me cope with my health issues. I guess that’s why I’m covered. They help tell my story without speaking and help me see my scars as beautiful.
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Overall, I keep my head held high and a smile on my face!
#chronicloveclub
CLC MEMBER FEATURE: My name is Abbey(27), I’m from Minnesota and I have cystic fibrosis. • I was diagnosed at birth after having a meconium ileus (bowel obstruction). Growing up, I never perceived to have many challenges. The only major complication came in fourth grade when I had an intussusception where my intestine turned inside out. It wasn’t until right before my senior year that I had a hospitalization for my lungs. This hit me pretty hard. I was diagnosed with CF related diabetes when I was 19. Daily insulin shots suck, but they energize me to feel better. In recent years, my biggest struggles emerged. I started having regular hemoptysis (coughing up blood) causing many hospitalizations and even some surgeries. I had a port placed this year because my arm veins are scarred and we can’t access them with PICC lines. Honestly, the port has been the best thing to happen. It’s so easy for me to access. I go on IV’s about 3+ times a year. Sometimes for large periods of time which is annoying, but I have a pretty cool fanny pack to carry it around in. • Luckily, I have the world’s best family and friends. They keep me strong help me through. I have 2 older brothers that are my rocks! One lives in California and visiting him is awesome. We go to Disney and Universal and it’s the best time! My other brother lives in Minnesota and is always there for everything. Family and their continued love makes life worthwhile. • I’ve worked full time for 11 years at Red Robin Gourmet Burgers. I have a supportive boss that works with me on my health needs. Work keeps me feeling normal, even when I have to be on IV’s. • Tattoos are life! I get tattooed frequently and have many meaningful pieces for my CF. It’s relaxing and therapeutic, helping me cope with my health issues. I guess that’s why I’m covered. They help tell my story without speaking and help me see my scars as beautiful. • Overall, I keep my head held high and a smile on my face! #chronicloveclub 
I posted a new blog post at howsyourspoons.com about Happiness and my complex relationship with it. But what I really want to know is what makes you happy? #me #blogger #happiness #writer #spoonie #spoonielife #spoonieproblems #blog #chronicillness #chronicallyfabulous #chronicloveclub #beautiful #moody #bestoftheday #picoftheday #photooftheday #selfie #girlswithtattoos
Our stories can be the catalyst for change! If you feel comfortable sharing your story, DM us! 📷: @kellyyhill #chronicloveclub
Our stories can be the catalyst for change! If you feel comfortable sharing your story, DM us! 📷: @kellyyhill #chronicloveclub 
Bummer, sometimes it’s easy peasy, others you get poked twice..... poor kid but clearance section @Target cheered her right up! #ourhappyplace

Her first Shopkins and she’s forgotten all about her arms. (Excuse her sweaty appearance, it’s just 108 with 54% humidity here 😵😵)
Bummer, sometimes it’s easy peasy, others you get poked twice..... poor kid but clearance section @Target cheered her right up! #ourhappyplace  Her first Shopkins and she’s forgotten all about her arms. (Excuse her sweaty appearance, it’s just 108 with 54% humidity here 😵😵)
Reminder! You don’t owe anyone anything. Ain’t that freeing? 😜
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I’ll be over here living my life. That might include going to the gym one day, wearing a bulky knee brace the next. It might include not being able to get off the couch one day, being able to go out with friends the next - my body doesn’t follow a schedule. It doesn’t care what I could or couldn’t do yesterday.
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I am just going to keep taking care of myself to the best of my ability while continuing to remind myself that another person’s understanding of my illness (or lack there of) doesn’t have to matter to me in the least. If I didn’t have to deal with this shit on a daily basis, I wouldn’t understand it either! 🖤
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PS: chronic illness is weird, y’all.
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#fragilebutunbreakable #butyoudontlooksick #dysautonomia #dysautonomiaawareness #posturalorthostatictachycardiasyndrome #potsie #zebrastrong #ehlersdanlossyndrome #ehlersdanlos #eds #hypermobility #mentalhealthmatters #invisibleillness #chronicloveclub
Reminder! You don’t owe anyone anything. Ain’t that freeing? 😜 ... I’ll be over here living my life. That might include going to the gym one day, wearing a bulky knee brace the next. It might include not being able to get off the couch one day, being able to go out with friends the next - my body doesn’t follow a schedule. It doesn’t care what I could or couldn’t do yesterday. ... I am just going to keep taking care of myself to the best of my ability while continuing to remind myself that another person’s understanding of my illness (or lack there of) doesn’t have to matter to me in the least. If I didn’t have to deal with this shit on a daily basis, I wouldn’t understand it either! 🖤 ... PS: chronic illness is weird, y’all. ... #fragilebutunbreakable  #butyoudontlooksick  #dysautonomia  #dysautonomiaawareness  #posturalorthostatictachycardiasyndrome  #potsie  #zebrastrong  #ehlersdanlossyndrome  #ehlersdanlos  #eds  #hypermobility  #mentalhealthmatters  #invisibleillness  #chronicloveclub 
The feeling of cool water and warm summer sunshine can be especially soothing and grounding when trauma triggers strike or when we are feeling generally anxious, panicked, or depressed. Unfortunately, not everyone has the luxury of or access to a pool or beach. Some folks are also fearful of open water or can’t swim. You don’t have to be on vacation (or know how to swim) to benefit from two abundant and entirely natural resources. A bowl full of water placed in the sun and a quiet space are all you need. Rest your hands or feet in the water. Watch how the droplets cause ripples on the surface that settle and become one with the whole. Imagine your feelings are these drops that momentarily unsettle and then pass with no lasting effect. Breathe gently, always extending the out breath, signaling your brain to turn of fight/flight/freeze. Give yourself permission to rest in this safe space that is so entirely though unconsciously familiar to all of us. Go easy today.
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#ptsd #trauma #chronicillness #chronicpain #invisibleillness #anxiety #depression #panic #worry #fear #grief #water #grounding #healing #selfcare #eds #pots #cancer #mindfulness #peace #encouragerssociety #themightysite #chronicloveclub #nostigma
The feeling of cool water and warm summer sunshine can be especially soothing and grounding when trauma triggers strike or when we are feeling generally anxious, panicked, or depressed. Unfortunately, not everyone has the luxury of or access to a pool or beach. Some folks are also fearful of open water or can’t swim. You don’t have to be on vacation (or know how to swim) to benefit from two abundant and entirely natural resources. A bowl full of water placed in the sun and a quiet space are all you need. Rest your hands or feet in the water. Watch how the droplets cause ripples on the surface that settle and become one with the whole. Imagine your feelings are these drops that momentarily unsettle and then pass with no lasting effect. Breathe gently, always extending the out breath, signaling your brain to turn of fight/flight/freeze. Give yourself permission to rest in this safe space that is so entirely though unconsciously familiar to all of us. Go easy today. . . #ptsd  #trauma  #chronicillness  #chronicpain  #invisibleillness  #anxiety  #depression  #panic  #worry  #fear  #grief  #water  #grounding  #healing  #selfcare  #eds  #pots  #cancer  #mindfulness  #peace  #encouragerssociety  #themightysite  #chronicloveclub  #nostigma 
Thanks @donorlifeco & Rocky Mtn Lions Eye Bank (RMLEB) for the Opportunity , sponsoring me to 🏃in 84th Race of 2018 Raising Awareness for All Community(s) & largest Donor Dash ever 👌:
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(7-15 19th Annual Donor Dash 5k)
* 26:05 | 8:25 pace | 199 of 4,856 | 19 of 182 Age
* @dexcom Start Sugar/BG: 67 ↗ with 23g @glukosenergy gummy 20 mins pre race. 20mins Post race BG: 89➡. .
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⭐2nd Year 🏃 for Team RMLEB, 🙏 @angrunsco ! In the circle of life, share the "circle of light". Ang & I have come to know each other closer & inspire each other. We won't be the fastest but we show up & give our best! Be the gift that keeps giving. It only takes a quick minute to give / donate lifesaving tissue, organs regardless of your conditions  @donorlifeco / RMLEB, links below:
Corneas.org
DonorAlliance.org
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#donatelife #donordash #RaiseAwareness #RunCheweyRun #5krun #sundayrunday #mondaymotivation #doYourThing #run4life #livebeyond #T1D #Diabetes #Migraines #circleoflight #washpark #accuchek #BuckOffDiabetes #dexcom #typeonerun #runnersroost #runcolfax #c3fit_usa #runspiration #Irunthisbody #chronicloveclub #theunchargeables #runner #marathontraining #insulin4all #whatsyourwhy
Thanks @donorlifeco & Rocky Mtn Lions Eye Bank (RMLEB) for the Opportunity , sponsoring me to 🏃in 84th Race of 2018 Raising Awareness for All Community(s) & largest Donor Dash ever 👌: . . (7-15 19th Annual Donor Dash 5k) * 26:05 | 8:25 pace | 199 of 4,856 | 19 of 182 Age * @dexcom Start Sugar/BG: 67 ↗ with 23g @glukosenergy gummy 20 mins pre race. 20mins Post race BG: 89➡. . . . ⭐2nd Year 🏃 for Team RMLEB, 🙏 @angrunsco ! In the circle of life, share the "circle of light". Ang & I have come to know each other closer & inspire each other. We won't be the fastest but we show up & give our best! Be the gift that keeps giving. It only takes a quick minute to give / donate lifesaving tissue, organs regardless of your conditions @donorlifeco / RMLEB, links below: Corneas.org DonorAlliance.org . . . . . . . #donatelife  #donordash  #RaiseAwareness  #RunCheweyRun  #5krun  #sundayrunday  #mondaymotivation  #doYourThing  #run4life  #livebeyond  #T1D  #Diabetes  #Migraines  #circleoflight  #washpark  #accuchek  #BuckOffDiabetes  #dexcom  #typeonerun  #runnersroost  #runcolfax  #c3fit_usa  #runspiration  #Irunthisbody  #chronicloveclub  #theunchargeables  #runner  #marathontraining  #insulin4all  #whatsyourwhy 
Round 3 of Botox for Migraines
•For more info on how this treatment has been life changing for me, check out the link in my bio. 💉
Round 3 of Botox for Migraines •For more info on how this treatment has been life changing for me, check out the link in my bio. 💉
Good afternoon, everyone! Michelle here sharing this exceptional self-portrait from the incredible, Jess (@jessica_k_miles). Some of you all may remember her from when she guest moderated here a couple of months ago. Jess’ self portraiture is beyond powerful. Not only does she always execute her portraits flawlessly and with intention but she is also an extremely intelligent and strong woman. With this self-portrait she shared a bit more education into her diagnoses and an upcoming procedure she is undergoing. I love self portraiture as a tool for healing. Wishing you all the best today, Jess, you lovely fierce woman. You all go visit Jess’ original post to gain insight into her strength and wisdom. Thank you for being so open with your journey, dear, and for allowing me to share this here today! Xo! 
Photo credit: @jessica_k_miles 
Curator: @mmbelle
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For new onlookers wondering what this hub is about: we share self-portraits only in this hub but there's a catch - the photo cannot contain any other people in the photo, only the person who created the self-portrait. While we appreciate all types of self-portraiture this hub is truly about taking the time to have an intimate moment with yourself.
______________________________________________ #tei_jessica_k_miles #selfportrait #selfportraiture #thevisualscollective #shootoffselfportrait #postthepeople #exploringcreativephotography #lookslikefilm #nothingisordinary #getin52 #p52radness #_a_beautiful_you #femilift #vaginalrejuvenation #womenshealth #reallife #liveauthentic #journeytohealth #chronicloveclub
Good afternoon, everyone! Michelle here sharing this exceptional self-portrait from the incredible, Jess (@jessica_k_miles). Some of you all may remember her from when she guest moderated here a couple of months ago. Jess’ self portraiture is beyond powerful. Not only does she always execute her portraits flawlessly and with intention but she is also an extremely intelligent and strong woman. With this self-portrait she shared a bit more education into her diagnoses and an upcoming procedure she is undergoing. I love self portraiture as a tool for healing. Wishing you all the best today, Jess, you lovely fierce woman. You all go visit Jess’ original post to gain insight into her strength and wisdom. Thank you for being so open with your journey, dear, and for allowing me to share this here today! Xo! Photo credit: @jessica_k_miles Curator: @mmbelle ______________________________________________ For new onlookers wondering what this hub is about: we share self-portraits only in this hub but there's a catch - the photo cannot contain any other people in the photo, only the person who created the self-portrait. While we appreciate all types of self-portraiture this hub is truly about taking the time to have an intimate moment with yourself. ______________________________________________ #tei_jessica_k_miles  #selfportrait  #selfportraiture  #thevisualscollective  #shootoffselfportrait  #postthepeople  #exploringcreativephotography  #lookslikefilm  #nothingisordinary  #getin52  #p52radness  #_a_beautiful_you  #femilift  #vaginalrejuvenation  #womenshealth  #reallife  #liveauthentic  #journeytohealth  #chronicloveclub 
I love my mommy a lot a lot.
And yes I’m almost 30 years old but I’ll be calling her my mommy dearest till the day i die.
I love her. I love her selflessness. I love when she speaks truth to me even if it’s hard and probably not what I want to hear. I love that there’s 39 years between us and yet we get each other. She understands me better than anyone.
So yeah, she’s amazing.
And I love her oh so much ❤️
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#mommylove #momcrushmonday #liveauthentic #fangirl #ily
I love my mommy a lot a lot. And yes I’m almost 30 years old but I’ll be calling her my mommy dearest till the day i die. I love her. I love her selflessness. I love when she speaks truth to me even if it’s hard and probably not what I want to hear. I love that there’s 39 years between us and yet we get each other. She understands me better than anyone. So yeah, she’s amazing. And I love her oh so much ❤️ . . . . . #mommylove  #momcrushmonday  #liveauthentic  #fangirl  #ily 
Mon, 16/07/2018 ¦
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Went to Manchester on Saturday to go to dad's birthday party, still wasn't feeling too well but had a nice time anyway, now however I am more ill than I was, a cold? Something else? I'm not sure but seeing a GP on Thursday just so be safe. I'm taking it nice and easy, since I finished the entire washing last week there is not much to do and any other chores are not necessary so I dont have to stress about it. Time to stay in bed, sleep it off and sweat it out 🤒🤧
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#cfs #chronicovercomer #chronicfatiguesyndrome #chronicpain #cfsme #mecfs #me #myalgicencephalomyelitis #spoonies #spoonie #recovery #tiredgirl #invisibleillness #sick #mentalhealth #timeforunrest #unrest #millionsmissing #ibs #brainfog #wherethetiredgirlsare #centralsensitization #chronicloveclub
Mon, 16/07/2018 ¦ ° Went to Manchester on Saturday to go to dad's birthday party, still wasn't feeling too well but had a nice time anyway, now however I am more ill than I was, a cold? Something else? I'm not sure but seeing a GP on Thursday just so be safe. I'm taking it nice and easy, since I finished the entire washing last week there is not much to do and any other chores are not necessary so I dont have to stress about it. Time to stay in bed, sleep it off and sweat it out 🤒🤧 ° ° #cfs  #chronicovercomer  #chronicfatiguesyndrome  #chronicpain  #cfsme  #mecfs  #me  #myalgicencephalomyelitis  #spoonies  #spoonie  #recovery  #tiredgirl  #invisibleillness  #sick  #mentalhealth  #timeforunrest  #unrest  #millionsmissing  #ibs  #brainfog  #wherethetiredgirlsare  #centralsensitization  #chronicloveclub 
Well....I thought I would be able to make it to work after a Sunday event, but who am I kidding? Ha! My tummy started to hurt after the little food I had, headache, pain everywhere, knot in my neck, didn't sleep as my thoughts were just racing about every single conversation I had with someone at the bridal shower. What I could of said, didn't say, should of acted...damn anxiety/social anxiety is for reals!!! It wipes you OUT! I slept til about 10am, had a bowl of cereal and back on the couch and nurse kitty by my side all while my husband has gone to his mandatory blood work for his job, went to Menards, Jewel for dinner, and now he is in the yard finishing the river rock project, then back to work for peer interviews, will come home, make dinner, workout and work 12 hours tomm. How did I get so lucky?! All while I sit on my butt... 😒 #feelgulity

#uctd #earlylupus #microscopiccolitis #anxiety #depression #raynaudsdisease #hypermobilejoints #heartmurmur #siccasyndrome #chronicillness #chronicpain #pain #sickgirl #invisibleillness #autoimmunedisease #spoonie #chronicloveclub #fatigue #fmla #inflammatoryboweldisease #colitis
Well....I thought I would be able to make it to work after a Sunday event, but who am I kidding? Ha! My tummy started to hurt after the little food I had, headache, pain everywhere, knot in my neck, didn't sleep as my thoughts were just racing about every single conversation I had with someone at the bridal shower. What I could of said, didn't say, should of acted...damn anxiety/social anxiety is for reals!!! It wipes you OUT! I slept til about 10am, had a bowl of cereal and back on the couch and nurse kitty by my side all while my husband has gone to his mandatory blood work for his job, went to Menards, Jewel for dinner, and now he is in the yard finishing the river rock project, then back to work for peer interviews, will come home, make dinner, workout and work 12 hours tomm. How did I get so lucky?! All while I sit on my butt... 😒 #feelgulity  #uctd  #earlylupus  #microscopiccolitis  #anxiety  #depression  #raynaudsdisease  #hypermobilejoints  #heartmurmur  #siccasyndrome  #chronicillness  #chronicpain  #pain  #sickgirl  #invisibleillness  #autoimmunedisease  #spoonie  #chronicloveclub  #fatigue  #fmla  #inflammatoryboweldisease  #colitis 
Ok Monday let’s do this!!!
Ok Monday let’s do this!!!
X-ray day!  Full body scan today.  Ave’s clearly thrilled to be here at 7am, lol!
X-ray day! Full body scan today. Ave’s clearly thrilled to be here at 7am, lol!
July 16 · Monday (Day -2)
Coming off of a bit of a rough night. I had pretty severe stomach pains for most of tonight, and they've decided based on my bloodwork & pain that my liver is starting to have issues. My labs are high, unfortunately, although things like this are to be expected, especially with the amount of pills & chemotherapy I'm taking. We should know what's going on by tomorrow morning.💊
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📍Today is my last day of chemo! 🙌🏻 This means that my body is all ready to receive the stem cells on Wednesday! This also means that sometimes soon my bloodwork & body are going to start showing the actual effects of the medication. Up until now, things are still clearing out of my system, but pretty soon they’ll be gone, which means that my health is going to start to deteriorate (as evidenced by my stomach pain). Although I am nervous about this, I also feel really safe & prepared. But I know that I am going to have difficult moments. 🖤 I think that if chronic illness has taught me anything about dealing with impossible things, it's that it is okay to be upset. Because this is upsetting. There's no award for being happy about terrible things. We do not all have to be those cute, asthetically pleasing blocks of wood you buy at Target that tell you to "choose joy" all the time. That’s exhausting. There’s value to positive thinking sometimes, but there is a time to admit that things are hard. & that is a lot more brave, a lot more important, than saying that you are fine when you're not. Vulnerability is oxygen. We need it to breathe. *
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#poements #bethematch #bonemarrow #chronicloveclub #chronicillness #invisibleillness #hospitalglam #columbus #weareunstoppable #blue #poetrygram #poetrycommunity #writingcommunity #writing #theeverygirl #girlschronicallyrock #spectacular #mondaymotivation
July 16 · Monday (Day -2) Coming off of a bit of a rough night. I had pretty severe stomach pains for most of tonight, and they've decided based on my bloodwork & pain that my liver is starting to have issues. My labs are high, unfortunately, although things like this are to be expected, especially with the amount of pills & chemotherapy I'm taking. We should know what's going on by tomorrow morning.💊 x x 📍Today is my last day of chemo! 🙌🏻 This means that my body is all ready to receive the stem cells on Wednesday! This also means that sometimes soon my bloodwork & body are going to start showing the actual effects of the medication. Up until now, things are still clearing out of my system, but pretty soon they’ll be gone, which means that my health is going to start to deteriorate (as evidenced by my stomach pain). Although I am nervous about this, I also feel really safe & prepared. But I know that I am going to have difficult moments. 🖤 I think that if chronic illness has taught me anything about dealing with impossible things, it's that it is okay to be upset. Because this is upsetting. There's no award for being happy about terrible things. We do not all have to be those cute, asthetically pleasing blocks of wood you buy at Target that tell you to "choose joy" all the time. That’s exhausting. There’s value to positive thinking sometimes, but there is a time to admit that things are hard. & that is a lot more brave, a lot more important, than saying that you are fine when you're not. Vulnerability is oxygen. We need it to breathe. * * * * * * * * * * #poements  #bethematch  #bonemarrow  #chronicloveclub  #chronicillness  #invisibleillness  #hospitalglam  #columbus  #weareunstoppable  #blue  #poetrygram  #poetrycommunity  #writingcommunity  #writing  #theeverygirl  #girlschronicallyrock  #spectacular  #mondaymotivation 
‪When you’re on a journey, you quickly learn there is only so much you can carry with you before the burden becomes too heavy and you’re left, under the weight of it all, on the side of the road.  What do you need to let go of in order to move forward?‬
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#chronicillness #interstitialcystitis #IC #heal #healing #hopeforhealing #spoonie #spoonies #encouragement #hope #justkeepswimming #keepgoing #ikeepgoing #instagood #instahope #inspiration #inspired #writing #writingblog #writersofinstagram #chronicblogs #autoimmune #FF #JJ #chronicloveclub #invisibleillness #butyoudontlooksick
‪When you’re on a journey, you quickly learn there is only so much you can carry with you before the burden becomes too heavy and you’re left, under the weight of it all, on the side of the road. What do you need to let go of in order to move forward?‬ ... ... ... ... ... ... ... ... ... ... ... #chronicillness  #interstitialcystitis  #IC  #heal  #healing  #hopeforhealing  #spoonie  #spoonies  #encouragement  #hope  #justkeepswimming  #keepgoing  #ikeepgoing  #instagood  #instahope  #inspiration  #inspired  #writing  #writingblog  #writersofinstagram  #chronicblogs  #autoimmune  #FF  #JJ  #chronicloveclub  #invisibleillness  #butyoudontlooksick