#chronicillness
To the people who couldn’t get out of their bed today, I’m here for you…
To the people who skipped showering because they didn’t have the energy, I’m here for you…
To the people who cried in agony through their shower, I’m here for you…
To the people who suffer daily but no one believes them, I’m here for you…
To the people who feel like they’ve lost or are losing their youth to their medical issues, I’m here for you…
To the brave people fighting for their health every day, I’m here for you, I support you, I believe you. Your feelings are valid, you are loved, and I will stand behind you.
Sometimes I get jealous of people with more visible illnesses than my own because people take their health problems more seriously. Like, maybe my parents would listen to me if I needed a wheelchair. Maybe my teachers would take me seriously if I had a service dog. But because I appear to be perfectly healthy on a day to day basis, people think I’m exaggerating my symptoms or that my CF is somehow “less severe” than other people. I am thankful for my relative health and not being dependent on aids, but some days I just wish I was a little sicker so that people would listen to me when I tell them I don’t feel well.
I specify both #ChronicIllness and #disability because the former is part of the latter, and many people think they shouldn’t ID as #disabled or have difficulty finding their place within the community. Recognizing that your ability level fluctuates does not shut you out. Most of ours do. While not all chronic illnesses are consistently disabling, if you have one, you have likely needed the protections afforded by the #ADA. Chronic illnesses are #InvisibleDisabilities. You belong.
#HospitalGlam
https://www.instagram.com/karolynprg/p/Bwhy688gnox/?utm_source=ig_tumblr_share&igshid=o29oo8505lsa
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#Hospitalglam: I had an echocardiogram this morning, at the big LA hospital I go to which feels like my home because I’m always there and almost everybody is so great with me. The receptionist checking me in said I had a great aura, and raved about my @marinafinionme earrings. I smiled and was happy when the tech called me in a few moments later. She was warm and we talked easily about patient agency and how hard it was to be seen; as a chronic patient, as a woman. She told me how much she felt it was an exchange of information and energy- that she learned from her patients- and that she was so happy to be there with me, as she moved an instrument over my heart to chart its rhythm. It’s hard to be disabled and navigate the medical system, especially in the US, but I am so grateful for the time I get to spend with caregivers like the one I had today, where I barely noticed the procedure due to the amazing connection I had. In this photo, I was not paying attention to the photo over the conversation I was having. It was incredible and I can only hope I cross paths with this amazing person again. #ehlersdanlosgrrls #echocardiogram #cardiology #chronicillness
https://www.instagram.com/karolynprg/p/BvkgSFGnIgn/?utm_source=ig_tumblr_share&igshid=10ewwse6tb44b
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I had the incredible pleasure of getting to visit and chat with @toitroutman for a little while last week. This woman is a badass who’s been living with #lupus for decades, and told me a lot about her recent admits. Swapping stories about hospitalists and the confusion that comes with the gap between how we look and how our bodies behave felt like a deep exhale. Sometimes there’s nothing more healing than community. #HospitalGlam
[#imagedescription: a shot of Toi and I standing next to her hospital bed, taken by her son. Toi is in the foreground, showing me how to work some tech offscreen, and I’m standing behind her watching and smiling, because this is also part of illness]
#invisibleillness #chronicillness #invisibledisabilities #disabled #ehlersdanlos #tbt
https://www.instagram.com/p/BpSJrIZHlLU/?utm_source=ig_tumblr_share&igshid=1tndg1tmfscj0
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Rolling with the punches/aches/pains/flare ups since 2016. Rheumatoid arthritis might be invisible, but it’s still hella painful. Be kind to everyone for you don’t know what battle they’re fighting.
#worldarthritisday #rhuematoidarthritis #chronicillness #chronicfatigue #rhuematoidarthritiswarrior #neon #dublin #throwback #arthritis #awareness #rolling #versusarthritis #the_neon_hunter #london #LEPhotography #photography #iphoneography (at Somewhere In Dublin)
https://www.instagram.com/p/CU8KfUksBAT/?utm_medium=tumblr
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You always think you’ll get around to sharing all 4,637,738 pictures you have of your child, but of course life happens and you don’t, and then one day you’re scrolling, and you find THIS picture () , taken almost 3 weeks ago, and realize () your child almost doesn’t look like this anymore, so you hurry to post it because TIME IS FLYING. And crawling. Flying and crawling. Both, both, both.
FYI: we were practicing our dainty hands over here. So you know what I’m having for dessert, right? #ladyfingers
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Oh, and these DARLING knitted booties we’re generously provided by @corrinasshop ✨
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#Motherhood #Photography #SeekTheSimplicity #LiveFolk #MamaHoodMoments #Art #MomBlogger #ArtistsOnInstagram #FlashesOfTheDelight #InteriorDesign #AheadOfTheCurve #LiveAuthentically #BeDeeplyRooted #ChronicIllness #DailyParenting #TheEveryDayProject #Candidchildhood #livethelittlethings #thehappynow #motherhoodrising #momstrong #childhoodunplugged #Writing #WritersOfInstagram #SheReadsTruth #LoveWins #HazelGwenAndMommy
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I realized the other day how very few pictures I have of both Hazel and me . . . I have roughly 4 badrillion photos of Hazel, but only about 6 of the two of us, and even fewer with Daddy in them. Like most moms, I assume, I’m always more eager to get pictures of Hazel (because, let’s be honest, showers and make-up are things of the past #momstrong), looking like the radiant Beastie she is, than I am of capturing MY image, when I feel purely beast. Due to multiple chronic illness issues, two-thirds of my hair fell out after Hazel was born, followed by a fierce case of adult acne. Add to that a hefty portion of sleep deprivation, and, well, no… I’m not aching to have my image documented. But a wise woman once told me – thank you, Sister Alyce – that I should be sure to get behind the lens as often as I can, because I will want these pictures, one day, despite how stinky and gray and covered in pimples I might be in them. She’s right of course, damn her.
And besides, if anything, my appearance is a more pure reflection of the me beneath the me; of how Hard I’m Showing Up for my child. It won’t always be this way. I won’t always be here, in this fragile, volatile space where love and desperation mingle and intertwine, two cords of the same rope with which I swing to new heights and occasionally want to hang myself …
So here’s to present over perfect.
Here’s to sacrifice and surrender and to inhabiting EVERY SINGLE MOMENT. Messy and painful and exquisite.
Because they are ours.
Because only we can invite and detain and extract them.
Here’s to bringing our nothing and our everything, to being unabashedly broken and relentlessly loved.
I can’t think of a better day for Love to win than that of Good Friday.
Happy Easter, beloveds.
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#Motherhood #Photography #SeekTheSimplicity #LiveFolk #MamaHoodMoments #Art #MomBlogger #ArtistsOnInstagram #FlashesOfTheDelight #InteriorDesign #AheadOfTheCurve #LiveAuthentically #BeDeeplyRooted #ChronicIllness #DailyParenting #TheEveryDayProject #Candidchildhood #livethelittlethings #thehappynow #motherhoodrising #momstrong #childhoodunplugged #Writing #WritersOfInstagram #SheReadsTruth #LoveWins #goodfriday
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After a lovely and FULL weekend, I’m not going to lie, Monday is kicking my butt. I refer to this kind of exhaustion as puke-y tired. You just wander-trudge from room to room, trying not to upchuck on anything hand-wash only. Going to make myself another (5) cup of ☕️ and maybe do a few jumping jacks. Or maybe I’ll just THINK about doing them. Same thing, right? Sure it is.
Anyone else battling puke-y tired?
If so, these should help.
I mean, THAT SMILE.
#goodgriefPickle
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#Motherhood #Photography #SeekTheSimplicity #LiveFolk #MamaHoodMoments #Art #MomBlogger #ArtistsOnInstagram #FlashesOfTheDelight #InteriorDesign #AheadOfTheCurve #LiveAuthentically #BeDeeplyRooted #ChronicIllness #DailyParenting #TheEveryDayProject #Candidchildhood #livethelittlethings #thehappynow #motherhoodrising #momstrong #childhoodunplugged #Writing #WritersOfInstagram #SheReadsTruth #LoveWins #HazelGwenAndMommy
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This little Pickle surprised the HECK out of her parents by ROLLING OVER on Sunday. There we were, just having our irregularly scheduled tummy time, expecting her to face plant into the mat as usual, and she goes and does a full 180. What the what!? I suppose she’ll be asking me for the car keys by next week…
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Magical knitted beanie @corrinasshop
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#Motherhood #Photography #SeekTheSimplicity #LiveFolk #MamaHoodMoments #Art #MomBlogger #ArtistsOnInstagram #FlashesOfTheDelight #InteriorDesign #AheadOfTheCurve #LiveAuthentically #BeDeeplyRooted #ChronicIllness #DailyParenting #TheEveryDayProject #Candidchildhood #livethelittlethings #thehappynow #motherhoodrising #momstrong #childhoodunplugged #Writing #WritersOfInstagram #SheReadsTruth #LoveWins #HazelGwenAndMommy
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Just a friendly reminder to be gentle with yourself. We can be our own toughest critics sometimes, but we’re all doing the best we can. Also, the week is more than halfway through - so there’s that!
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Stay Strong #RP! Thanks @naturally_lupie #spoonies #spoonielife #arthritis #ankylosing #spondylitis #chronicillness #invisibledisease #spinalcord #inflammation #infusion #backpain
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Sometimes we hear stories about the really crazy things docs say to people. We thought we would share some of these, and ask you for yours. Because sometimes all you can do is shake your head and laugh…. And then find a new doctor! ~~
“You can’t have AS because in all my years practicing, I’ve never diagnosed anyone with AS.”
“My Mom is having a bad time right now. I asked her Dr. If it could be AS. He said she doesn’t have the bamboo back so she doesn’t have AS.” - (posted on our page just today)
OBGYN: “Obviously I can’t have anyone in my practice with spondylitis….”
Rheum to just diagnosed patient: “You have AS. There is nothing you can do except take medication and accept that it will probably get worse.”
“Doctor: You have pink-eye. Me: It doesn’t feel like pink-eye, it feels like someone is stabbing my eye with a hat pin. Doctor: it’s pink eye - I know what I’m talking about, I’m a doctor. (Hint: it wasn’t pink eye - anyone with AS knows what it was)”
#Truestory
“My name is Wendy Krulee and I have Ankylosing Spondilitis (AS)….I blaze the trail for others by learning as much as I can about my disease and by spreading awareness. I will “kick that door in” as Cookie would say and I will kick all the shit off my bucket list when/while I can. I will NOT let this disease rule me. It is not who I am, it is just a portion of me that makes up the whole, good and bad.”
You Go Wendy! AS Warrior
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PSA to all AS Warriors to remember what their fellow AS warrior Jamie Coman said—>
“I have had ankylosing spondylitis for 15 years, along with a few other diseases. People often say I don’t look sick, or you’re too young to have that many things wrong with you. My name is Jamie Coman, and I’m a rock star!”
AND YOU ALL ARE!
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JOY OF JOYS, #ehlersdanlossyndrome subtype testing *finally* achieved. (IT ONLY TOOK MOST OF A FREAKIN’ DECADE.) Now… I overnight this to the University of Washington’s Collagen Diagnostic Lab ¹ And then… we wait.
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#ZebraStrong #ZebraPersistent #autoimmunedisease #nevergiveup #chronicpain #chronicillness
https://www.instagram.com/p/BswSAp_AsB8/?utm_source=ig_tumblr_share&igshid=m5qfxrwtg07p
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