#thechronicmom

MOST RECENT

It’s been a long time since I posted. I guess I needed the break. I’ve had good stretches of feeling well (and recent encouraging PFTs), and I’ve struggled with setbacks (6 weeks with Shingles/PHN was the biggest). Still trying to wrap my brain around my diagnoses and what it all means. I’m at the Scleroderma Foundation National Patient Education Conference with my husband, and I’m grateful to be here. There’s a lot to take in, but there are hundreds of us going through this, and I’m thankful to feel a part of a community and less alone. Looking forward to the lectures and workshops over the next two days. Knowledge and inspiration, I’m seeking you out! #reachforthecure #sclerodermaconference2018 #sclerodermapatienteducationconference #gratefulheart💖

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#ihavetoday #ihavehope#ihavenoideawhatimdoing #ihavesomuchtolearn #autoimmune #autoimmunedisease #spoonies #spoontheory #scleroderma #systemicsclerosis #myositis #polymyositis #interstitiallungdisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #antisynthetasesyndrome #immunosuppressants #invisibleillness #sclerodermaawareness #sclerodermasmarter #sclerodermawarrior
#chronicillness#thechronicmom #hope 🌸💖

Here’s a helluva refreshing change!! Whether it lasts a day or years, I am grateful as can be for “stable to improved.” It’s been a long time since that’s been the case. Deep thanks to everyone for your support and well wishes. Onward!





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#ihavetoday #ihavehope#ihavenoideawhatimdoing #ihavesomuchtolearn #autoimmune #autoimmunedisease #scleroderma #systemicsclerosis #myositis #interstitiallungdisease #mctd #mixedconnectivetissuedisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #gerddiet #immunosuppressants #immunosuppressed #invisibleillness #sclerodermaawareness #sclerodermawarrior #spoonie #spoonies
#chronicillness#hope #thechronicmom

I recently hung this hammered metal sign on a kitchen wall at home. It’s meant as a bit of a reminder to self (and others) to maintain optimism. Well, my preteen boys thought it read “HORE,” as in “whore” spelled incorrectly. So now it inspires a daily giggle, which makes hope and optimism that much easier to reach. So all’s well that ends in a laugh. #humorheals and #preteensarefun
#💜🤦🏻‍♀️🤷🏻‍♀️💜





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#ihavetoday #ihavehope #ihavehore
#ihavenoideawhatimdoing #ihavesomuchtolearn #autoimmune #autoimmunedisease #scleroderma #systemicsclerosis #myositis #interstitiallungdisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #gerddiet #immunosuppressants #immunosuppressed #invisibleillness #sclerodermaawareness #sclerodermawarrior #spoonies
#chronicillness#hope #hore #hores #thechronicmom

Uhhh, Happy Labs Monday?! I’m just really, really hoping for no curveballs. Fingers crossed. But in all sincerity, Happy Monday to us all. The sun is shining in NY, my body feels relatively good, and for these things and more, I am super grateful. 💙
#springinNY


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#ihavetoday #ihavehope#ihavenoideawhatimdoing #ihavesomuchtolearn #autoimmune #autoimmunedisease #spoonies #spoontheory #scleroderma #systemicsclerosis #myositis #interstitiallungdisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #gerddiet #immunosuppressants #immunosuppressed #invisibleillness #sclerodermaawareness #sclerodermawarrior #labs
#chronicillness#thechronicmom #hope

I haven’t posted in a while. I’ve been enjoying the start of Spring and the warmer temperatures’ effects on my psyche and my body. Hooray!

I’m still working on the #scrapvortex100dayproject, taking a mess of random fabrics from old projects, sewing same-size scraps, and trying to make some sense of it all, visually. It’s #meditative and I’ve found this very therapeutic lately. Literally putting the pieces together seems fitting (pun intended) for where I’m at in my life.
#arttherapy #mindfulnesspractice #colortherapy 🧡💙💛💚❤️🎨



#scrapvortex100dayproject #happyscrappy #feelingscrappy #scrapvortex


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#ihavehope #ihavetoday
#ihavenoideawhatimdoing #ihavesomuchtolearn #scleroderma #systemicsclerosis #myositis #interstitiallungdisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #autoimmune #autoimmunedisease #spoonies #immunosuppressants #immunosuppressed #invisibleillness #sclerodermaawareness #sclerodermawarrior
#chronicillness#thechronicmom #hope 💚

Thrilled to share that my bone marrow biopsy results were good. Funny to now feel grateful to have only Scleroderma, and its related pulmonary and esophageal issues, plus Myositis, and whatever else I’m forgetting. But I can scratch Lymphoma off of the list of potential additions, and that’s fantastic news.

Monday brings more PFTs (Pulmonary Function Tests, for the uninitiated) and more labs and a rheumatological check-in. And this weird medical journey and new normal continues. But oncology is off of the calendar for a while. And it’s sunny today with rumors of a true Spring forecast this weekend.

Nice to have some good news to share for my 100th post here. Life is good. And Friday the Thirteenth proved itself a lucky day again. And I AM GRATEFUL. Thanks, as always, for the support, encouragement, good vibes, prayers, love, and best wishes. I am a lucky woman. ❤️


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#ihavehope #ihavetoday
#ihavenoideawhatimdoing #ihavesomuchtolearn #scleroderma #systemicsclerosis #myositis #interstitiallungdisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #autoimmune #autoimmunedisease #spoonies #immunosuppressants #immunosuppressed #invisibleillness #sclerodermaawareness #sclerodermawarrior
#chronicillness #bonemarrowbiopsy #greatresult #gratefulalways #yayspring #thingsareblooming
#thechronicmom #hope 💚

Joined the #scrapvortex100dayproject a little late. Taking fabric scraps and trying to make something beautiful from all the chaos of the scrap bag. So far it’s a very therapeutic exercise, so add #arttherapy to my regimen. Plus #mindfulnesspractice and #colortherapy 🧡💙💛💚❤️🎨 •

#scrapvortex100dayproject #happyscrappy #quiltingismytherapy #scrapvortex Thank you for hosting @wendyfranczak This is the perfect project for where I’m at. #grateful🙏

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#ihavehope #ihavetoday
#ihavenoideawhatimdoing #ihavesomuchtolearn #scleroderma #systemicsclerosis #myositis #interstitiallungdisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #autoimmune #autoimmunedisease #spoonies #immunosuppressants #immunosuppressed #invisibleillness #sclerodermaawareness #sclerodermawarrior
#chronicillness#thechronicmom #hope 💚

Another hurdle cleared, another scary test behind me. Results next week, I hope. The chances that I’m dealing with #Lymphoma on top of all the autoimmune and lung and GI crap are super-slim, but funky labs mean more digging. I’m good for it.💪🏼🤟🏼
And now to enjoy a sunny Friday the Thirteenth. Wishing you all a happy Spring weekend. 💚🌱🌿


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#ihavehope #ihavetoday
#ihavenoideawhatimdoing #ihavesomuchtolearn #scleroderma #systemicsclerosis #myositis #interstitiallungdisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #autoimmune #autoimmunedisease #spoonies #immunosuppressants #immunosuppressed #invisibleillness #sclerodermaawareness #sclerodermawarrior
#chronicillness #oncology #ughhhhh #fridaythe13th #bonemarrowbiopsy#thechronicmom #hope 💚

Family vacation is over, and I’m a little crushed. But I’m so grateful I got to get away even temporarily. It was a valuable reality break for my head. •
I have a bone marrow biopsy this Friday. Life is not dull. But fear isn’t consuming me. I’m becoming strangely accustomed to some of this, and though I have low moments, I feel great optimism overall. The sun mingles with the clouds, and it’s beautiful. I will weather this latest storm. ❤️


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#ihavehope #ihavetoday
#ihavenoideawhatimdoing #ihavesomuchtolearn #scleroderma #systemicsclerosis #myositis #interstitiallungdisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #autoimmune #autoimmunedisease #spoonies #immunosuppressants #immunosuppressed #invisibleillness #sclerodermaawareness #sclerodermawarrior
#chronicillness #oncology #ughhhhh #fridaythe13th #bonemarrowbiopsy#thechronicmom #hope 💚

Behold some monkeys in the trees above our little room! I love these amazing creatures. Watching them is exactly the right antidote, as I’m trying to put aside anxiety about more unexpected lab results that have me seeing another oncologist next week. Friday the Thirteenth, in particular. The great news is that Fri the 13th has always been a source of good luck for us as a family. So I’ll cling to that. But in the meantime, monkeys are bringing me major joy. 🐒😍🇨🇷


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#ihavehope #ihavetoday
#ihavenoideawhatimdoing #ihavesomuchtolearn #autoimmune #autoimmunedisease #spoonies #scleroderma #systemicsclerosis #myositis #interstitiallungdisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #gerddiet #immunosuppressants #immunosuppressed #invisibleillness #sclerodermaawareness #sclerodermawarrior
#chronicillness #howlermonkeys #monkeysinthetrees #oncology #ughhhhh #fridaythe13th #luckyday🍀#thechronicmom #hope 💚

We stumbled upon a tiny and beautiful cemetery right next to the ocean yesterday, and I returned today to have a sit and pay respects. Very simple, special place. Uplifting somehow even. •
And I feel a special affinity for “Mark the Welder.” Even in death, he’s bringing smiles and laughter. (see final photo.) Rest In Peace, Sir. 🇨🇷🌊 •
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#ihavehope
#ihavenoideawhatimdoing #ihavesomuchtolearn #autoimmune #autoimmunedisease #spoonies #scleroderma #systemicsclerosis #myositis #interstitiallungdisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #gerddiet #immunosuppressants #immunosuppressed #invisibleillness #sclerodermaawareness #sclerodermawarrior
#chronicillness #guionescemetary #markthewelder #thetideishighandsoami #funnygravestones#thechronicmom #hope 💚

Wherever you go, there you are, right? I was bummed, at first, to discover that even in paradise (first family vacation since Dx/Tx ), Raynaud’s and numbness still found me. I still have to take all of the medications including the one that increases chances of developing skin cancer and the one that makes me photosensitive and the one that makes me moody and/or foggy. Even though I’m on a break from my real life, I still find myself short of breath without exertion at times or unexpectedly weak. BUT I’m participating, I’m enjoying. I can do so much. So I’m living in gratitude. This day is all any of us has. I’m so happy to be here, struggles be damned. •

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#ihavehope
#ihavenoideawhatimdoing #ihavesomuchtolearn #autoimmune #autoimmunedisease #spoonies #scleroderma #systemicsclerosis #myositis #interstitiallungdisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #gerddiet #immunosuppressants #immunosuppressed #invisibleillness #sclerodermaawareness #sclerodermawarrior
#chronicillness #whereveryougo #whereveryougothereyouare #whereverigo
#thechronicmom #hope 💚

Being sick, but having diagnoses and a plan beats the hell out of being sick forever with no clue why and thinking it will magically go away. Weird to feel grateful for crappy diagnoses, but at least they give me a chance. And there were never any guarantees on my life to begin with. I can live with this. I will live with this. I have to live with this. And I will live well. Family vacation coming soon. Then I add PT and OT to the regimen. Spring is here. And it’s time to kick some Scleroderma/Myositis/Interstitial Lung Disease ass. And also nap. 💙


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#ihavehope
#ihavenoideawhatimdoing #ihavesomuchtolearn #autoimmune #autoimmunedisease #spoonies #scleroderma #systemicsclerosis #myositis #interstitiallungdisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #gerddiet #immunosuppressants #immunosuppressed #invisibleillness #sclerodermaawareness #sclerodermawarrior
#chronicillness #cannabaker #medibles #cannabaking#thechronicmom #hope

Sun is setting on a fine weekend. The remaining snow will soon melt, and the trees will fill with leaves and blooms. The cycling of the seasons is on my mind a lot, and the Spring renewal is arriving just when I need it most. •
I’ve had it with Raynaud’s flares, fingertip ulcers, and other symptoms triggered and exasperated by the cold. This is a season for hope. ❤️


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#ihavehope
#ihavenoideawhatimdoing #ihavesomuchtolearn #autoimmune #autoimmunedisease #spoonies #scleroderma #systemicsclerosis #digitalulcers #myositis #interstitiallungdisease #pulmonaryfibrosis #gerd #gastroesophogealrefluxdisease #gerddiet #immunosuppressants #immunosuppressed #invisibleillness #sclerodermaawareness #sclerodermawarrior
#chronicillness
#thechronicmom

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