Mah Eeds

One of the not not so chipper things in life is that I have a Chronic Illness, and one that most people have never heard of. It's called Ehler-Danlos Syndrome which is way too formal and medical for us so my son renamed it "Mah Eeds" (pronounced like NEEDS without the "n") https://myheds.wordpress.com
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It’s official, I have now finished draft one of book one in the four book series…. “It’s Mah Eeds” will hopefully be out by this time next year. Huge Thanks to NaNoWri…

Book “It’s Mah Eeds”

It’s official, I have now finished draft one of book one in the four book series…. “It’s Mah Eeds” will hopefully be out by this time next year. Huge Thanks to NaNoWri…

It’s official, I have now finished draft one of book one in the four book series…. “It’s Mah Eeds” will hopefully be out by this time next year. Huge Thanks to NaNoWri…

Book “It’s Mah Eeds”

It’s official, I have now finished draft one of book one in the four book series…. “It’s Mah Eeds” will hopefully be out by this time next year. Huge Thanks to NaNoWri…

Writer, Blogger, Survivor, WIP (in all ways). This is the blog about my broken Eeds body (Short for Ehlers-Danlos Syndrome) and how I live and love and cope with a chronic genetic condition. Coming…

Writer, Blogger, Survivor, WIP (in all ways). This is the blog about my broken Eeds body (Short for Ehlers-Danlos Syndrome) and how I live and love and cope with a chronic genetic condition. Coming…

There are so many terrible terrible things about Chronic illness that take so much from us, & it's true, I will never be the same ... but in so many ways I am better ... I wouldn't choose it but I am more knowledgeable, even more empathetic, I'm learning to care for myself for once, and I'm sharing what I learn. I get to write, to connect on line, and have "met" some of most inspiring people I know. On a bad day life totally sucks, but on a good day I still have 3 legs but I'm a way better…

There are so many terrible terrible things about Chronic illness that take so much from us, & it's true, I will never be the same ... but in so many ways I am better ... I wouldn't choose it but I am more knowledgeable, even more empathetic, I'm learning to care for myself for once, and I'm sharing what I learn. I get to write, to connect on line, and have "met" some of most inspiring people I know. On a bad day life totally sucks, but on a good day I still have 3 legs but I'm a way better…

It might not look exactly yummy, but I'm trying to be good at forcing fruit & veg down my throat with as much bypass of my fragile allergic mouth as possible ... so these became a smoothie (which don't look pretty!) . Pineapples 🍍  Blueberries Seeds & Spinach with lots & lots of water and ground down to very tiny bits to drink it down fast with a fat straw!  ____________ #smoothie #spoonie #tryinghard #icandothis #ehleradanlos #EDS #chroniclife #zebrastrong

It might not look exactly yummy, but I'm trying to be good at forcing fruit & veg down my throat with as much bypass of my fragile allergic mouth as possible ... so these became a smoothie (which don't look pretty!) . Pineapples 🍍 Blueberries Seeds & Spinach with lots & lots of water and ground down to very tiny bits to drink it down fast with a fat straw! ____________ #smoothie #spoonie #tryinghard #icandothis #ehleradanlos #EDS #chroniclife #zebrastrong

Blogging about the "invisible" part of invisible illness this morning ... my thumb isn't even swollen .. or red, or bones broken ... there is nothing to show the damaged aching tendon that went crazy from me opening a teabag sachet .... You can't see POTS or EDS or a whole bunch of other conditions that are debilitating 😢 __________ #ZebraStrong #MahEeds #EDS #chroniclife #brokenbody #Eedslife  #RockinMahEeds #EDS #brokenbutbeautiful #chronicillness #brokenbutnotbeat #spoonies #spoonie…

Blogging about the "invisible" part of invisible illness this morning ... my thumb isn't even swollen .. or red, or bones broken ... there is nothing to show the damaged aching tendon that went crazy from me opening a teabag sachet .... You can't see POTS or EDS or a whole bunch of other conditions that are debilitating 😢 __________ #ZebraStrong #MahEeds #EDS #chroniclife #brokenbody #Eedslife #RockinMahEeds #EDS #brokenbutbeautiful #chronicillness #brokenbutnotbeat #spoonies #spoonie…

Feeling so sore today, the weather changed so I sprained everything on nothing including my thumb opening a teabag sachet 😢 ... Invisible conditions mean that there is nothing to see! No one can see the tendon that I felt go twang all the way up my thumb and hand... no one can see my aching fingers and they think I'm hostile because I won't shake their hand ... I'm not rude I'm just very very fragile and very very sore! And I have no voice to explain it and most ppl don't want to hear it…

Feeling so sore today, the weather changed so I sprained everything on nothing including my thumb opening a teabag sachet 😢 ... Invisible conditions mean that there is nothing to see! No one can see the tendon that I felt go twang all the way up my thumb and hand... no one can see my aching fingers and they think I'm hostile because I won't shake their hand ... I'm not rude I'm just very very fragile and very very sore! And I have no voice to explain it and most ppl don't want to hear it…

Only a few months ago this was me... soaking in natural hot pools in Tuscany Italy It was Heaven... Till I got out and my bp dropped so badly I couldn't walk out of the forest 😢 ... We try so hard to do "normal" "gentle" things, even therapeutic things like this which was great for MahEeds and aching muscles & tendons, but my POTS stole it all 😢 _________________ #dysautonomiaawarenessmonth #POTS #MahEeds #EDS #chroniclife #ZebraStrong #EhlersDanlos #spoonie #EDSzebra #eedsblogger…

Only a few months ago this was me... soaking in natural hot pools in Tuscany Italy It was Heaven... Till I got out and my bp dropped so badly I couldn't walk out of the forest 😢 ... We try so hard to do "normal" "gentle" things, even therapeutic things like this which was great for MahEeds and aching muscles & tendons, but my POTS stole it all 😢 _________________ #dysautonomiaawarenessmonth #POTS #MahEeds #EDS #chroniclife #ZebraStrong #EhlersDanlos #spoonie #EDSzebra #eedsblogger…

RUOK? Day today! We fail at so many of these steps: judging ppl's hurts, telling…

We fail at so many of these steps: judging ppl's hurts, telling…

Decanting glazes for smaller easier jars on #maheedshands & experiments with…

Decanting glazes for smaller easier jars on & experiments with…

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