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  • I may look small and cute in this first picture but who would have thought 2.5 years later at the age of 61 you would still be able to and still have to carry me up a flight of stairs at a mere 90 lbs, I’d say you’re doing pretty good for your age! Thank you for being my playmate, peanut butter pal (@skippy only!), and letting me break the rules...although we all know I’m the alpha male in this house! I will forever remain your lap dog! I hope you had the happiest of birthdays!
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#happybirrhday #birthdayboy #baberuthmuseum #mydogiscutest #lapdog #holdme #bestfriends #goldenretriever #servicedog #dogdad #playmates #crps #peanutbutter #nervepain #ellenratemydog #complexregionalpainsyndrome #crpswarrior #raredisease #sdit #painwarrior #chronicillness #chronicpain #dysautonomia #potssyndrome #youdontlooksick #spooniefamily #cutestgoldens #amazed_dog #prideroar #tgpfeature
  • I may look small and cute in this first picture but who would have thought 2.5 years later at the age of 61 you would still be able to and still have to carry me up a flight of stairs at a mere 90 lbs, I’d say you’re doing pretty good for your age! Thank you for being my playmate, peanut butter pal (@skippy only!), and letting me break the rules...although we all know I’m the alpha male in this house! I will forever remain your lap dog! I hope you had the happiest of birthdays!
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    #happybirrhday #birthdayboy #baberuthmuseum #mydogiscutest #lapdog #holdme #bestfriends #goldenretriever #servicedog #dogdad #playmates #crps #peanutbutter #nervepain #ellenratemydog #complexregionalpainsyndrome #crpswarrior #raredisease #sdit #painwarrior #chronicillness #chronicpain #dysautonomia #potssyndrome #youdontlooksick #spooniefamily #cutestgoldens #amazed_dog #prideroar #tgpfeature

  •  5  0  9 minutes ago
  • i don’t know how to exist here right now.

i’m in a rough part of my recovery coinciding with a global pandemic.

i was finally starting to believe that i was making a huge step forward for the first time in a long time, only to have it ripped away in an instant.

this isn’t about the pandemic, i still don’t have words to articulate my feelings about it and i doubt i will any time soon. the pandemic is disrupting every facet of everyone’s lives - sick or healthy - and there is no comparison to that.

this is about my broken heart.

i’ve been quiet on here because my heart has been shattered. i’ve grown accustomed to ups and downs, but this one got me. it’s likely this phase will end, but in the meantime that doesn’t mean it isn’t painful.

i guess all i’m saying is that if you’re hurting in any way,  i’m right there with you. i hope all of you and your loved ones are staying as safe as possible & to my medical processionals and essential workers out there: thank you for your sacrifice and i hope you all stay safe♥️
  • i don’t know how to exist here right now.

    i’m in a rough part of my recovery coinciding with a global pandemic.

    i was finally starting to believe that i was making a huge step forward for the first time in a long time, only to have it ripped away in an instant.

    this isn’t about the pandemic, i still don’t have words to articulate my feelings about it and i doubt i will any time soon. the pandemic is disrupting every facet of everyone’s lives - sick or healthy - and there is no comparison to that.

    this is about my broken heart.

    i’ve been quiet on here because my heart has been shattered. i’ve grown accustomed to ups and downs, but this one got me. it’s likely this phase will end, but in the meantime that doesn’t mean it isn’t painful.

    i guess all i’m saying is that if you’re hurting in any way, i’m right there with you. i hope all of you and your loved ones are staying as safe as possible & to my medical processionals and essential workers out there: thank you for your sacrifice and i hope you all stay safe♥️

  •  49  12  16 minutes ago
  • Most of you know but we can only hope that the rest of the world will soon understand.
  • Most of you know but we can only hope that the rest of the world will soon understand.

  •  3  1  17 minutes ago
  • I want to thank everyone who took the time to cheer me up. 
Instead of working because my mindset just wasn’t right I decided to pick up a pencil and try to draw after all it has been 5-6 years 😳
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#cushingssyndrome #fitness #healing #healthy #fit #cushingdisease #cushingsdiseasesucks #fitnessmotivation #positive #inspiration #motivation #manifest #drawing #weightlosstransformation #lawofattraction #disabilityawareness #tattoogirl #cushingsawareness #invisibleillnessawareness #spoonie #workfromhomelife #entrepreneurlife #autoimmunedisease #crushingcushings #entrepreneur #natural #raredisease #zebra #invisibleillness
  • I want to thank everyone who took the time to cheer me up.
    Instead of working because my mindset just wasn’t right I decided to pick up a pencil and try to draw after all it has been 5-6 years 😳
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    #cushingssyndrome #fitness #healing #healthy #fit #cushingdisease #cushingsdiseasesucks #fitnessmotivation #positive #inspiration #motivation #manifest #drawing #weightlosstransformation #lawofattraction #disabilityawareness #tattoogirl #cushingsawareness #invisibleillnessawareness #spoonie #workfromhomelife #entrepreneurlife #autoimmunedisease #crushingcushings #entrepreneur #natural #raredisease #zebra #invisibleillness

  •  2  3  23 minutes ago
  • Connective tissue serves in some of the most important functions of the body and also makes up a large part of our total mass. They impart structure and stability by aiding in mechanical support, movement, tissue fluid transport, cell migration, and wound healing. The extracellular matrix (ECM) is also an essential part of connective tissue. Collagen is one of the most important components of the ECM because of its ability to stretch and resist tension. Someone with EDS has deficits in their connective tissue for a variety of reasons (depending on the EDS subtype), which means it’s unstable and unable to the support the body and organs. 
#raredisease #EDS #eds.strong #awareness #education #ehlersdanlosyndrome #ehlersdanlos #medicalresearch #medicine
  • Connective tissue serves in some of the most important functions of the body and also makes up a large part of our total mass. They impart structure and stability by aiding in mechanical support, movement, tissue fluid transport, cell migration, and wound healing. The extracellular matrix (ECM) is also an essential part of connective tissue. Collagen is one of the most important components of the ECM because of its ability to stretch and resist tension. Someone with EDS has deficits in their connective tissue for a variety of reasons (depending on the EDS subtype), which means it’s unstable and unable to the support the body and organs.
    #raredisease #EDS #eds.strong #awareness #education #ehlersdanlosyndrome #ehlersdanlos #medicalresearch #medicine

  •  8  0  57 minutes ago
  • Some days you can’t win but with dogs you’re never alone.
  • Some days you can’t win but with dogs you’re never alone.

  •  7  1  1 hour ago
  • Ação social em Caldas Novas Goiás participe você também
  • Ação social em Caldas Novas Goiás participe você também

  •  3  1  1 hour ago
  • The original plan for CRPSna had us turning up to Bunnings at 7am to set up for a sausage sizzle today. 
This is one of our fundraisers that enables us to pay for core charity support expenses, such as the internet, domain name, web site space etc.

Like everyone else at the moment, we are doing our bit and keeping everyone safe by staying at home. 
Thank you to the amazing CRPSna volunteers who assist us throughout the year at fundraisers, awareness and education events etc.  Your advocacy, help, commitment and support are valued always. 🧡

#CRPS #CRPS2020 #Fundraiser #ComplexRegionalPainSyndrome #Carers #Sausage Sizzle #CRPSawareness #charity #NervePain #Volunteers #CoreSupportFunding #CRPScharity #RareDisease  #StrongerTogether #CRPScharityAus #CRPSaustralia #CRPSreallyGetsOnMyNerves #CRPSnetworksAus #YourCRPSna
  • The original plan for CRPSna had us turning up to Bunnings at 7am to set up for a sausage sizzle today.
    This is one of our fundraisers that enables us to pay for core charity support expenses, such as the internet, domain name, web site space etc.

    Like everyone else at the moment, we are doing our bit and keeping everyone safe by staying at home.
    Thank you to the amazing CRPSna volunteers who assist us throughout the year at fundraisers, awareness and education events etc.  Your advocacy, help, commitment and support are valued always. 🧡

    #CRPS #CRPS2020 #Fundraiser #ComplexRegionalPainSyndrome #Carers #Sausage Sizzle #CRPSawareness #charity #NervePain #Volunteers #CoreSupportFunding #CRPScharity #RareDisease  #StrongerTogether #CRPScharityAus #CRPSaustralia #CRPSreallyGetsOnMyNerves #CRPSnetworksAus #YourCRPSna

  •  1  0  1 hour ago
  • ⚠️IMPORTANT UPDATE⚠️ Due to extremely high demand, we are temporarily sold out of face masks. We will be releasing our next allotment of masks on Tuesday, April 7th. The NEW production time for face masks has also increased to 7-11 business days. This DOES impact orders that have previously been placed. If you have already placed an order and would prefer a refund instead of waiting, I will absolutely take care of that – just message me! Thank you guys so much for understanding, during this unprecedented time! I’ll be sure to post here when they are up and available again, so keep your eyes peeled. If you have any additional questions please don’t hesitate to reach out!💛🥄
  • ⚠️IMPORTANT UPDATE⚠️ Due to extremely high demand, we are temporarily sold out of face masks. We will be releasing our next allotment of masks on Tuesday, April 7th. The NEW production time for face masks has also increased to 7-11 business days. This DOES impact orders that have previously been placed. If you have already placed an order and would prefer a refund instead of waiting, I will absolutely take care of that – just message me! Thank you guys so much for understanding, during this unprecedented time! I’ll be sure to post here when they are up and available again, so keep your eyes peeled. If you have any additional questions please don’t hesitate to reach out!💛🥄

  •  222  7  2 hours ago
  • When the chronic illnesses universe collides with the current covid19 universe, many things shift. Not just the adapted everyday life, financial issues, uncertainity, fears, cancelled plans and health risks are on our mind. We still have our job of a professional patient. .
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Unfortunately, we have to take precautiouns in this area as well - some appointments are nesseeccary and can't be done via telephone or videochat. Some medications aren't available and we need to figure out a plan B. Another serious part are cancelled appointments. Because we have to wait months or even half a year on a regular basis - how long will it take until my cardiologist specialist or ophthalmologist appointments regarding my relapsing polychondritis can be rescheduled? .
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Our health care system is very good in Austria but it isn't perfect, many things needed to change years ago but never did. Not just for the patients but the health care professionals too. It will be very interesting to see how they will handle this situation in the long run. .
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#painsomnia #ehlersdanlossyndrome #ehlersdanlossyndrom #connectivetissuedisorder #EDS #relapsingpolychondritis #polychondritis #autoimmunedisease #paralyzed #spinalcordinjury #spinesurgery  #zebrastrong #butyoudontlooksick #spoonie #chronicillness #chronicallyill #chronicpain #immunosuppressed #intestinaldysmotility #craniocervicalinstability #disability #dysautonomia #hashimotosdisease #invisibleillness #hypermobility #hypermobilitysyndrome #raredisease #pots #potssyndrome #risikogruppe
  • When the chronic illnesses universe collides with the current covid19 universe, many things shift. Not just the adapted everyday life, financial issues, uncertainity, fears, cancelled plans and health risks are on our mind. We still have our job of a professional patient. .
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    Unfortunately, we have to take precautiouns in this area as well - some appointments are nesseeccary and can't be done via telephone or videochat. Some medications aren't available and we need to figure out a plan B. Another serious part are cancelled appointments. Because we have to wait months or even half a year on a regular basis - how long will it take until my cardiologist specialist or ophthalmologist appointments regarding my relapsing polychondritis can be rescheduled? .
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    Our health care system is very good in Austria but it isn't perfect, many things needed to change years ago but never did. Not just for the patients but the health care professionals too. It will be very interesting to see how they will handle this situation in the long run. .
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    #painsomnia #ehlersdanlossyndrome #ehlersdanlossyndrom #connectivetissuedisorder #EDS #relapsingpolychondritis #polychondritis #autoimmunedisease #paralyzed #spinalcordinjury #spinesurgery #zebrastrong #butyoudontlooksick #spoonie #chronicillness #chronicallyill #chronicpain #immunosuppressed #intestinaldysmotility #craniocervicalinstability #disability #dysautonomia #hashimotosdisease #invisibleillness #hypermobility #hypermobilitysyndrome #raredisease #pots #potssyndrome #risikogruppe

  •  10  2  2 hours ago
  • This fall I decided to start using a cane. Why? 1. It can be helpful for balance when it’s dark or icy. 2. The symptoms of Friedreich’s Ataxia can often get confused with drunkenness. The cane let’s people know that I’m not drunk, rather there is something else going on. I get a lot of weird looks that silently say, “why is a fit looking young man carrying a cane?” A lady at Target once asked me if it’s a pimp cane 😂. Through it all I can smile, knowing that my trials have made me a stronger person and brought me closer to God. What trials in your life are doing the same for you?
  • This fall I decided to start using a cane. Why? 1. It can be helpful for balance when it’s dark or icy. 2. The symptoms of Friedreich’s Ataxia can often get confused with drunkenness. The cane let’s people know that I’m not drunk, rather there is something else going on. I get a lot of weird looks that silently say, “why is a fit looking young man carrying a cane?” A lady at Target once asked me if it’s a pimp cane 😂. Through it all I can smile, knowing that my trials have made me a stronger person and brought me closer to God. What trials in your life are doing the same for you?

  •  31  7  2 hours ago
  • Here’s a story of the scariest time in my life so far.

What I learned:
Keep doing your best, even when life throws you the worst
Resilience is in all of us
There are always silver linings

This was my worst day and I survived.

Keep doing your best and if you take something out of this, please share it in the comments. ♥️♥️♥️
  • Here’s a story of the scariest time in my life so far.

    What I learned:
    Keep doing your best, even when life throws you the worst
    Resilience is in all of us
    There are always silver linings

    This was my worst day and I survived.

    Keep doing your best and if you take something out of this, please share it in the comments. ♥️♥️♥️

  •  0  1  2 hours ago
  • Did you know that purple is a symbol of royalty and luxury? In the Bible, the color purple is also associated with the rich and with authority (Judges 8:26; Esther 1:6: 8:15; Daniel 5:16, 29). It was used mockingly by the Roman soldiers to decorate Jesus Christ as the King of the Jews before he was hung to die on the cross. Spoiler alert: he is still King and will forever be. (Mark 15:17, 20; John 19:2, 5) You may or may not believe what we do and that is completely fine, no judgement, no pressure. I want to simply explain why this cross grabbed at my heart. The symbol of shades of purple dripping down a clean white cross sings to my soul of the price paid for me by the King of Kings and Lord of Lords. Easter is next weekend, friends and my Jesus is alive. .
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#kingofkings #lordoflords #foreverhereigns #heisrisen #themeaningofpurple #heartworkbykinnen #medicaldebt #tubiemom #medicalmom #kinnenfrancinekuhn #artbykinnen #kinnenshearts #heartsforkinnen #heartwork #supportkinnen #tubie #glycogenstoragedisease #gsdtype1a #glycogenstoragedisease1a #gtube #genenicdisorder #rarediseaseawareness #raredisease #tubefed #nourish #sociallyimpactful
  • Did you know that purple is a symbol of royalty and luxury? In the Bible, the color purple is also associated with the rich and with authority (Judges 8:26; Esther 1:6: 8:15; Daniel 5:16, 29). It was used mockingly by the Roman soldiers to decorate Jesus Christ as the King of the Jews before he was hung to die on the cross. Spoiler alert: he is still King and will forever be. (Mark 15:17, 20; John 19:2, 5) You may or may not believe what we do and that is completely fine, no judgement, no pressure. I want to simply explain why this cross grabbed at my heart. The symbol of shades of purple dripping down a clean white cross sings to my soul of the price paid for me by the King of Kings and Lord of Lords. Easter is next weekend, friends and my Jesus is alive. .
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    #kingofkings #lordoflords #foreverhereigns #heisrisen #themeaningofpurple #heartworkbykinnen #medicaldebt #tubiemom #medicalmom #kinnenfrancinekuhn #artbykinnen #kinnenshearts #heartsforkinnen #heartwork #supportkinnen #tubie #glycogenstoragedisease #gsdtype1a #glycogenstoragedisease1a #gtube #genenicdisorder #rarediseaseawareness #raredisease #tubefed #nourish #sociallyimpactful

  •  35  1  3 hours ago
  • Results are in folks. Oliver & I are both COVID19 negative! It’s a relief to not be worried about that anymore, but Oliver is still having a lot of trouble breathing even with the oxygen support so we’re going to have to stay here at the Children’s Hospital for a while. Hopefully it follows the same trajectory as the last time and we’re out of here in under a week!

Stay safe everyone!! And for goodness sake, stay home! We were being SO cautious of germs I felt like a crazy person and my medically fragile son still landed in the hospital. If you don’t do it for you, do it for my son & everyone like him, for the healthcare workers, for the elderly, for the most susceptible. Together we can beat this thing! 
And if you do find yourself in contact with any healthcare workers please extend the most heartfelt thank you possible. These guys are truly the heroes in all of this!! 💗💗💗 •
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#covid19 #coronavirus #coronanegative #covidnegative
#eaglebarrettsyndrome #prunebellysyndrome #kidneyfailure #chronickidneydisease #kidneydisease #ckd #warrior #miraclebaby #fighter #littlefighteroliver #journeytotransplant #kidneytransplant #raredisease #raresyndrome #raredisorder #rarecondition #invisibleillness #ngtube #gtube #tubie #medicalmama #medicallycomplex #thankanurse #healthcareworkers 
#hospitallife #medicalneeds
  • Results are in folks. Oliver & I are both COVID19 negative! It’s a relief to not be worried about that anymore, but Oliver is still having a lot of trouble breathing even with the oxygen support so we’re going to have to stay here at the Children’s Hospital for a while. Hopefully it follows the same trajectory as the last time and we’re out of here in under a week!

    Stay safe everyone!! And for goodness sake, stay home! We were being SO cautious of germs I felt like a crazy person and my medically fragile son still landed in the hospital. If you don’t do it for you, do it for my son & everyone like him, for the healthcare workers, for the elderly, for the most susceptible. Together we can beat this thing!
    And if you do find yourself in contact with any healthcare workers please extend the most heartfelt thank you possible. These guys are truly the heroes in all of this!! 💗💗💗 •




    #covid19 #coronavirus #coronanegative #covidnegative
    #eaglebarrettsyndrome #prunebellysyndrome #kidneyfailure #chronickidneydisease #kidneydisease #ckd #warrior #miraclebaby #fighter #littlefighteroliver #journeytotransplant #kidneytransplant #raredisease #raresyndrome #raredisorder #rarecondition #invisibleillness #ngtube #gtube #tubie #medicalmama #medicallycomplex #thankanurse #healthcareworkers
    #hospitallife #medicalneeds

  •  110  23  3 hours ago
  • Love, love, love
  • Love, love, love

  •  15  3  3 hours ago
  • ⁉️⁉️ #DYK? Dercum's disease was first described by neurologist Francis Xavier Dercum at the University of Pennsylvania in 1888. Dercum's disease is characterized by painful lipomas in subcutaneous adipose (fat) tissue (SAT). Women are more affected than men. Currently, there is no cure for #Dercums disease.Treatment consists of addressing symptoms and pain management. Learn more about this rare disease at www.fatdisorders.org⠀
DercumsAwareness⠀
DercumsDiseaseAwarenessDay⠀
#Dercums⠀
#adiposisdolorosa #livingwithdercums⠀
#raredisease
  • ⁉️⁉️ #DYK? Dercum's disease was first described by neurologist Francis Xavier Dercum at the University of Pennsylvania in 1888. Dercum's disease is characterized by painful lipomas in subcutaneous adipose (fat) tissue (SAT). Women are more affected than men. Currently, there is no cure for #Dercums disease.Treatment consists of addressing symptoms and pain management. Learn more about this rare disease at www.fatdisorders.org⠀
    DercumsAwareness⠀
    DercumsDiseaseAwarenessDay⠀
    #Dercums
    #adiposisdolorosa #livingwithdercums
    #raredisease

  •  7  0  3 hours ago
  • Scenes from today's #cycling with my little #crps #chronicpain & #raredisease awareness buddy, Max. And my 🧡 ⤵️
Him: "Only" 55 km = 1st outdoor ride of the year + sprints at the end - on a fitness cross, not his #roadbike 🤣⤵️
Me: 45 km, 5th ride of 2020 = Have to work up slowly, riding without using my right hand/arm 😎
  • Scenes from today's #cycling with my little #crps #chronicpain & #raredisease awareness buddy, Max. And my 🧡 ⤵️
    Him: "Only" 55 km = 1st outdoor ride of the year + sprints at the end - on a fitness cross, not his #roadbike 🤣⤵️
    Me: 45 km, 5th ride of 2020 = Have to work up slowly, riding without using my right hand/arm 😎

  •  10  2  3 hours ago
  • Alles scheint so leicht. Alles sieht so schön aus. Die Leute sagen „Ihr seid stark.“ Niemand sieht die Verzweiflung, den täglichen Kampf, die Tränen, die Leere, die Einsamkeit, die Wut. Ich bin nicht stark. Ich bin nur einfach hier geblieben. Mir bleibt ja gar nichts anderes übrig, als weiter zu machen. Ehrlich gesagt bin ich ganz froh über Social distancing. Ich bin gerne in meiner kleinen Juli-Blase. Da, wo niemand über Zukunft und „Du musst jetzt aber mal“ spricht. Zu Hause geht jeder seinen eigenen Weg. Trauer ist sehr individuell, jeder muss da irgendwie alleine durch. Gemeinsam trauern kann man irgendwie gar nicht richtig. Jeder weiß um den Kampf des anderen, es ist still.
Mit Corona ist mein ganzes Therapie-Gerüst auf einmal weggebrochen.
Manchmal guck ich in die Sonne und denke, ich werde nie wieder die Leichtigkeit einer Zigarettenwerbung spüren (liberté toujour, wer erinnert sich?), das Kribbeln im Bauchnabel, die Freude am Strand tanzender Menschen, was weiß ich. Ich sehe aus wie ich und ich bin es nicht. Mit Juli ist auch Ginka gegangen. Nichts ist mehr wie es war. Es wird nie wieder wie vorher. Mein Kind ist in meinen Armen gestorben. Das wird nicht wieder gut. Keine Zeit der Welt wird jemals diese Wunde heilen.

#liebe #einlichtfürjuli #positivejourney #grateful #timeofmylife #warriormom #trauerbewältigung #mamaleben #momlife #instamamagang #lebenmitkindern #mamablog #mamablogger_de #mamablogger #kleinerfeinerfeed #familyfirst #alltagmitkindern #verwaisteeltern #achtsamkeitimalltag #motherhoodunplugged #dubistüberallwowirsind #dufehlstmirso #brokenheartsclub #mamablogger #holdyourbabiesclose #ichtragdichbeimir #bisanmeinlebensende #nevergiveup #spreadawareness #raredisease
  • Alles scheint so leicht. Alles sieht so schön aus. Die Leute sagen „Ihr seid stark.“ Niemand sieht die Verzweiflung, den täglichen Kampf, die Tränen, die Leere, die Einsamkeit, die Wut. Ich bin nicht stark. Ich bin nur einfach hier geblieben. Mir bleibt ja gar nichts anderes übrig, als weiter zu machen. Ehrlich gesagt bin ich ganz froh über Social distancing. Ich bin gerne in meiner kleinen Juli-Blase. Da, wo niemand über Zukunft und „Du musst jetzt aber mal“ spricht. Zu Hause geht jeder seinen eigenen Weg. Trauer ist sehr individuell, jeder muss da irgendwie alleine durch. Gemeinsam trauern kann man irgendwie gar nicht richtig. Jeder weiß um den Kampf des anderen, es ist still.
    Mit Corona ist mein ganzes Therapie-Gerüst auf einmal weggebrochen.
    Manchmal guck ich in die Sonne und denke, ich werde nie wieder die Leichtigkeit einer Zigarettenwerbung spüren (liberté toujour, wer erinnert sich?), das Kribbeln im Bauchnabel, die Freude am Strand tanzender Menschen, was weiß ich. Ich sehe aus wie ich und ich bin es nicht. Mit Juli ist auch Ginka gegangen. Nichts ist mehr wie es war. Es wird nie wieder wie vorher. Mein Kind ist in meinen Armen gestorben. Das wird nicht wieder gut. Keine Zeit der Welt wird jemals diese Wunde heilen.

    #liebe #einlichtfürjuli #positivejourney #grateful #timeofmylife #warriormom #trauerbewältigung #mamaleben #momlife #instamamagang #lebenmitkindern #mamablog #mamablogger_de #mamablogger #kleinerfeinerfeed #familyfirst #alltagmitkindern #verwaisteeltern #achtsamkeitimalltag #motherhoodunplugged #dubistüberallwowirsind #dufehlstmirso #brokenheartsclub #mamablogger #holdyourbabiesclose #ichtragdichbeimir #bisanmeinlebensende #nevergiveup #spreadawareness #raredisease

  •  59  5  3 hours ago
  • Today I had my daily call from the COVID-19 team and they virtually discharged me. Today is a good day.  Now begins the long road to reversing the deconditioning that’s happened over the last month, but it needs to be slow, steady and I need to take it easy. 
I asked whether I was allowed out the house for my once a day exercise even though I’m considered by the NHS to be one of the people that needs to be ‘shielded’. The advice on the website once you receive that letter or text is not to leave your house for 12 weeks and to just use your garden, but I don’t have a garden and fresh air and exercise is so important and movement is essential for me to maintain and manage life with my EDS. 
The doctor said that it would be ok as long as I was very strict about the 2 meter rule and did not come into contact with anyone else and was strict about it only being once a day until the end of June, no matter what the government decides for the wider society. Even though I have been ill they said they do not know enough about immunity to be able to say I would be 100% immune so I can’t risk it. 
So on Monday I plan to start having a short daily walk and then work up to then doing a cycle ride with my new bike that I got for my birthday last week - and I can’t wait!! Cycling is my favourite form of movement and I have always dreamt of owning my own e-bike, and now I do!! But I know the most important thing is not to push myself too much and to take it slowly. Pacing is key. 
I am feeling incredibly grateful to have got through this and to be getting back to normal. I still get breathless and tired easily so I need to still pace and take it easy and be patient with my recovery, but I’m alive. I’m here. I got through a pneumonia without being hospitalised for the first time in my life, and I will fully recover. Thank you all for your love, light and support along the way 💫
  • Today I had my daily call from the COVID-19 team and they virtually discharged me. Today is a good day. Now begins the long road to reversing the deconditioning that’s happened over the last month, but it needs to be slow, steady and I need to take it easy.
    I asked whether I was allowed out the house for my once a day exercise even though I’m considered by the NHS to be one of the people that needs to be ‘shielded’. The advice on the website once you receive that letter or text is not to leave your house for 12 weeks and to just use your garden, but I don’t have a garden and fresh air and exercise is so important and movement is essential for me to maintain and manage life with my EDS.
    The doctor said that it would be ok as long as I was very strict about the 2 meter rule and did not come into contact with anyone else and was strict about it only being once a day until the end of June, no matter what the government decides for the wider society. Even though I have been ill they said they do not know enough about immunity to be able to say I would be 100% immune so I can’t risk it.
    So on Monday I plan to start having a short daily walk and then work up to then doing a cycle ride with my new bike that I got for my birthday last week - and I can’t wait!! Cycling is my favourite form of movement and I have always dreamt of owning my own e-bike, and now I do!! But I know the most important thing is not to push myself too much and to take it slowly. Pacing is key.
    I am feeling incredibly grateful to have got through this and to be getting back to normal. I still get breathless and tired easily so I need to still pace and take it easy and be patient with my recovery, but I’m alive. I’m here. I got through a pneumonia without being hospitalised for the first time in my life, and I will fully recover. Thank you all for your love, light and support along the way 💫

  •  494  79  4 hours ago
  • Connecting our dazzle around the world! ⁠
⁠
"Hello to everyone in the community! At 6 years old I was diagnosed with Kyphoscoliotic EDS (kEDS). ⁠
⁠
"I recently graduated in Moldova, and I try to live as healthy a life as I can. I love to read and draw, and I am proud of my work!" ☺️🦓⁠
⁠
What do you love to do, what are your passions? #ZebraStrong⁠
⁠
  • Connecting our dazzle around the world! ⁠

    "Hello to everyone in the community! At 6 years old I was diagnosed with Kyphoscoliotic EDS (kEDS). ⁠

    "I recently graduated in Moldova, and I try to live as healthy a life as I can. I love to read and draw, and I am proud of my work!" ☺️🦓⁠

    What do you love to do, what are your passions? #ZebraStrong

  •  249  5  4 hours ago
  • APRIL is National Donate Life Month! Please, if you haven’t and you feel led to, go to⁣
⁣
>>> donatelife.net <<<⁣
⁣
or click the link in our bio to become an organ donor. You can change lives with the organs you won’t need when you go. 💓 Extremely thankful for ours!⁣
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🗝⁣
Kimberly⁣
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#transplant #love #doublelungtransplant #lungtransplant #organdonor #becomeanorgandonor #savelives #hospital #clevelandclinic #cysticfibrosis #65roses #rare #raredisease #cysticfibrosisawareness #cysticfibrosisfoundation #sister #sisters #cyster #cysters #family #secondchanceatlife #transplantsurvivor #Godsnotdonewithyou  #organdonation #curecf #giftoflife #donatelife #april #cfawareness #breathe
  • APRIL is National Donate Life Month! Please, if you haven’t and you feel led to, go to⁣

    >>> donatelife.net <<<⁣

    or click the link in our bio to become an organ donor. You can change lives with the organs you won’t need when you go. 💓 Extremely thankful for ours!⁣

    🗝⁣
    Kimberly⁣
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    #transplant #love #doublelungtransplant #lungtransplant #organdonor #becomeanorgandonor #savelives #hospital #clevelandclinic #cysticfibrosis #65roses #rare #raredisease #cysticfibrosisawareness #cysticfibrosisfoundation #sister #sisters #cyster #cysters #family #secondchanceatlife #transplantsurvivor #Godsnotdonewithyou #organdonation #curecf #giftoflife #donatelife #april #cfawareness #breathe

  •  66  0  4 hours ago
  • Für den heutigen Tag hatte Isabella einen klaren Plan, den sie konsequent abgearbeitet hat: 
Als erstes haben wir unsere Osterbasteleien abgeschlossen. Spontan sind Isabella dabei immer mehr eingefallen, die sie beschenken wollte. Nur der Hunger schaffte es, dass wir gegen Mittag endlich zum Frühstück kamen.
Danach ging es mit Drache Basti und seinem Motorrad nach draußen. Nachdem die letzten Ausfahrten etwas holprig waren, haben wir heute den „Inlineskater-Platz“ getestet und damit endlich eine Fläche gefunden, wo Basti richtig flitzen konnte. 🛵🐲👍🏻
Beim Barbie-Spiel mit Anna & Elsa hat Elsa heute ihr 8. Kind „Klein-Elsa“ geboren. Nebenbei tauchte der verschwundene Mann von Schwester Anna „Prinz Christoph“ und der Mann von Elsas großer Tochter Antonia „Prinz Antonio“ wieder auf. Langsam wird es eng im Schloss, obwohl dafür schon das Doppelbett herhalten muss, und ich brauche einen Stammbaum, um den Überblick zu behalten.
Die Zeit bis zum Abendessen haben wir mit Memory zugebracht. Wenn wir etwas unternehmen, sammeln/kaufen/erschnorren wir uns immer 2 gleiche Dinge, die wir in unseren Koffer packen. Isabella liebt es darin zu wühlen und weiß bis heute genau, von woher, von wem und aus welchem Anlass sie was hat.
Nachdem die letzten Monate eher von Rückschritten geprägt waren und Isabellas Konzentrationsspanne deutlich abgenommen hat, war es heute ein super Tag, der an alte Zeiten angeknüpft hat. Hoffen wir das Beste!

#gemeinsamgegenkinderdemenz #ncl #kinderdemenz #ncldeutschland #nclstiftung #battendisease #cln3 #jncl #curebatten #unseretochter #lebenmitkindern #ausdemlebeneinermutter #familienleben #familiezuerst #familienzeit #familienbande #momof2 #gemeinsamezeit #heuteso #Berlin #hiergradso #blogleserwissenmehr #raredisease #selteneerkrankungen #seltenekrankheiten
  • Für den heutigen Tag hatte Isabella einen klaren Plan, den sie konsequent abgearbeitet hat: 
    Als erstes haben wir unsere Osterbasteleien abgeschlossen. Spontan sind Isabella dabei immer mehr eingefallen, die sie beschenken wollte. Nur der Hunger schaffte es, dass wir gegen Mittag endlich zum Frühstück kamen.
    Danach ging es mit Drache Basti und seinem Motorrad nach draußen. Nachdem die letzten Ausfahrten etwas holprig waren, haben wir heute den „Inlineskater-Platz“ getestet und damit endlich eine Fläche gefunden, wo Basti richtig flitzen konnte. 🛵🐲👍🏻
    Beim Barbie-Spiel mit Anna & Elsa hat Elsa heute ihr 8. Kind „Klein-Elsa“ geboren. Nebenbei tauchte der verschwundene Mann von Schwester Anna „Prinz Christoph“ und der Mann von Elsas großer Tochter Antonia „Prinz Antonio“ wieder auf. Langsam wird es eng im Schloss, obwohl dafür schon das Doppelbett herhalten muss, und ich brauche einen Stammbaum, um den Überblick zu behalten.
    Die Zeit bis zum Abendessen haben wir mit Memory zugebracht. Wenn wir etwas unternehmen, sammeln/kaufen/erschnorren wir uns immer 2 gleiche Dinge, die wir in unseren Koffer packen. Isabella liebt es darin zu wühlen und weiß bis heute genau, von woher, von wem und aus welchem Anlass sie was hat.
    Nachdem die letzten Monate eher von Rückschritten geprägt waren und Isabellas Konzentrationsspanne deutlich abgenommen hat, war es heute ein super Tag, der an alte Zeiten angeknüpft hat. Hoffen wir das Beste!

    #gemeinsamgegenkinderdemenz  #ncl  #kinderdemenz  #ncldeutschland  #nclstiftung  #battendisease  #cln3  #jncl  #curebatten  #unseretochter #lebenmitkindern #ausdemlebeneinermutter #familienleben #familiezuerst #familienzeit #familienbande #momof2 #gemeinsamezeit #heuteso #Berlin #hiergradso #blogleserwissenmehr #raredisease #selteneerkrankungen #seltenekrankheiten

  •  14  1  4 hours ago
  • Maybe this is what you need. ✨
  • Maybe this is what you need. ✨

  •  29  2  4 hours ago
  • 🇸🇪 www.fopsverige.se länk i profilen. 👣❗️#FOPdiagnos 
Synligt & vanligt tecken vid födseln är en missbildning av stortårna. Under de första 2 årtiondena i livet börjar märkliga svullnader/knölar som ofta misstas för cancer dyka upp.
•••
❗️Det här kan ske helt spontant utan någon synlig anledning alls.
❗️Om man ramlar eller slår sig.
❗️Utsätts för en intra muskulär spruta, biopsi eller operation.
❗️Hanteras extra varsamt.
•••
FOP Drabbar ca: 1 på 2 miljoner. Drygt 900 kända fall i världen.
15 st kända fall i Sverige (2017).
•••
En av världens mest sällsynta
diagnoser som omvandlar muskler, senor, ligament och annan sammanbindande vävnad till skelett. Bryggor av extra ben bildas över leder och förhindrar progressivt rörligheten.
•••
FOP orsakas av en genetisk mutation och i de allra flesta fall är det en nymutation, den genetiska koden är ACVR1(c.617G>A; R206H)
•••
#FOPsverige #FOPawareness #sällsyntaliv #rarelife #raredisease #sällsyntdiagnos #fibrodysplasiaossificansprogressiva #curefop
  • 🇸🇪 www.fopsverige.se länk i profilen. 👣❗️ #FOPdiagnos
    Synligt & vanligt tecken vid födseln är en missbildning av stortårna. Under de första 2 årtiondena i livet börjar märkliga svullnader/knölar som ofta misstas för cancer dyka upp.
    •••
    ❗️Det här kan ske helt spontant utan någon synlig anledning alls.
    ❗️Om man ramlar eller slår sig.
    ❗️Utsätts för en intra muskulär spruta, biopsi eller operation.
    ❗️Hanteras extra varsamt.
    •••
    FOP Drabbar ca: 1 på 2 miljoner. Drygt 900 kända fall i världen.
    15 st kända fall i Sverige (2017).
    •••
    En av världens mest sällsynta
    diagnoser som omvandlar muskler, senor, ligament och annan sammanbindande vävnad till skelett. Bryggor av extra ben bildas över leder och förhindrar progressivt rörligheten.
    •••
    FOP orsakas av en genetisk mutation och i de allra flesta fall är det en nymutation, den genetiska koden är ACVR1(c.617G>A; R206H)
    •••
    #FOPsverige #FOPawareness #sällsyntaliv #rarelife #raredisease #sällsyntdiagnos #fibrodysplasiaossificansprogressiva #curefop

  •  7  0  4 hours ago
  • ALWAYS HIS SAFE PLACE..
Repost @activelynourishedmum 💙
How lucky am I that still after four and a half years I can bring him peace and calm and still carry him ❤️ most days lately haven’t been easy the nights even worse but it’s times like this with him close to my chest that my heart swells with love! He’s a fighter for sure and fights every battle with such resilience and strength, never breaking stride so to speak!!! This kid amazes me daily!
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#duchenneheroes #duchenne #charity #duchenneboys #duchennemusculardystrophy #childhooddisease #raredisease #geneticdisease #warrior #duchenneparentproject #mybabyboy #littlelove #lovethelifeyoulive #DMD #endduchenne #thanksgiving #donate #peacelove #ngo #sohrabkavir #naskavir #disabled #eternalmarcom #eternalpictures #fighter #braveheart #wheelchair
  • ALWAYS HIS SAFE PLACE..
    Repost @activelynourishedmum 💙
    How lucky am I that still after four and a half years I can bring him peace and calm and still carry him ❤️ most days lately haven’t been easy the nights even worse but it’s times like this with him close to my chest that my heart swells with love! He’s a fighter for sure and fights every battle with such resilience and strength, never breaking stride so to speak!!! This kid amazes me daily!
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    #duchenneheroes #duchenne #charity #duchenneboys #duchennemusculardystrophy #childhooddisease #raredisease #geneticdisease #warrior #duchenneparentproject #mybabyboy #littlelove #lovethelifeyoulive #DMD #endduchenne #thanksgiving #donate #peacelove #ngo #sohrabkavir #naskavir #disabled #eternalmarcom #eternalpictures #fighter #braveheart #wheelchair

  •  54  0  5 hours ago
  • School’s out 😳 due to Covid-19 🥺 day 19 (23) - Enjoyed the day in the kitchen! Stop wasting food  xxand that’s why we made “kachbudding” an old southern danish dessert made of day old white bread, soaked in milk and mixed with egg and sugar before baked in the oven with some cinnamon sugar on the top 🥰 And we made the best buns ever!!! Aaaand homemade pizza 🍕 Got a wonderful recipe from a friend 😋 How about you? How’s the situation at your house/neighbourhood? Where are you located? We’re in Denmark 🇩🇰 #noonansyndrome #noonansyndrom #raredisease #noonanbraf #rarediseases #sjældnediagnoser #desjældnedanskere #covid_19 #stayathome #blivhjemme #holdafstand #vaskhænder #besafe #paspåjerselvoghinanden #solskin #sønderjylland #danmark #dänemark #denmark #sønderjyske #hjemmeskole  #covid19 #spring #truefriendsareneverapartmaybeindistancebutneverinheart #kach #kachbudding #bamseboller #sammenhverforsig #togetherapart  #en_families_liv_noonan  @ Kruså, Sonderjylland, Denmark 🇩🇰
  • School’s out 😳 due to Covid-19 🥺 day 19 (23) - Enjoyed the day in the kitchen! Stop wasting food xxand that’s why we made “kachbudding” an old southern danish dessert made of day old white bread, soaked in milk and mixed with egg and sugar before baked in the oven with some cinnamon sugar on the top 🥰 And we made the best buns ever!!! Aaaand homemade pizza 🍕 Got a wonderful recipe from a friend 😋 How about you? How’s the situation at your house/neighbourhood? Where are you located? We’re in Denmark 🇩🇰 #noonansyndrome #noonansyndrom #raredisease #noonanbraf #rarediseases #sjældnediagnoser #desjældnedanskere #covid_19 #stayathome #blivhjemme #holdafstand #vaskhænder #besafe #paspåjerselvoghinanden #solskin #sønderjylland #danmark #dänemark #denmark #sønderjyske #hjemmeskole #covid19 #spring #truefriendsareneverapartmaybeindistancebutneverinheart #kach #kachbudding #bamseboller #sammenhverforsig #togetherapart #en_families_liv_noonan @ Kruså, Sonderjylland, Denmark 🇩🇰

  •  5  0  5 hours ago
  • How did your life change with #socialdistancing and #quarantine during the corona #virus #pandemic ? The truth is that it didn’t change much or at all for many people with chronic health conditions including #lupus #lupusnephritis #sle #migraine #lymedisease #chronicillness #chronicpain #fibromyalgia and #autoimmunedisease such as #sjogrenssyndrome #multiplesclerosis #rheumatoidarthritis #hashimotosthyroiditis and many other #rarediseases ... This happened because they reduced social interactions already long time ago due to their health conditions and how their health challenges affected their lives. Can you relate?

Would you like your voice to be heard and help research by sharing your experiences with your #health condition?
⁠⠀
⁠⠀
If you were diagnosed with ANY #disease syndrome #illness or #disability and are 14+ years old from the USA and Canada you are invited and encouraged to participate.⁠⠀
⁠⠀
You will receive a $5 gift card of your choice for signing up and a compensation of $100 hourly for your contribution through online and phone interviews and surveys that you can complete from your home.⁠⠀
⁠⠀
There are many more research studies like this.⁠⠀
⁠⠀
Learn all the details and sign up via https://LupusSelfHelp.com/research or use the link in my Instagram profile description at @outsmartlupus <<== CLICK
  • How did your life change with #socialdistancing and #quarantine during the corona #virus #pandemic ? The truth is that it didn’t change much or at all for many people with chronic health conditions including #lupus #lupusnephritis #sle #migraine #lymedisease #chronicillness #chronicpain #fibromyalgia and #autoimmunedisease such as #sjogrenssyndrome #multiplesclerosis #rheumatoidarthritis #hashimotosthyroiditis and many other #rarediseases ... This happened because they reduced social interactions already long time ago due to their health conditions and how their health challenges affected their lives. Can you relate?

    Would you like your voice to be heard and help research by sharing your experiences with your #health condition?
    ⁠⠀
    ⁠⠀
    If you were diagnosed with ANY #disease syndrome #illness or #disability and are 14+ years old from the USA and Canada you are invited and encouraged to participate.⁠⠀
    ⁠⠀
    You will receive a $5 gift card of your choice for signing up and a compensation of $100 hourly for your contribution through online and phone interviews and surveys that you can complete from your home.⁠⠀
    ⁠⠀
    There are many more research studies like this.⁠⠀
    ⁠⠀
    Learn all the details and sign up via https://LupusSelfHelp.com/research or use the link in my Instagram profile description at @outsmartlupus <<== CLICK

  •  71  1  5 hours ago
  • After stormy 🌬times there will be sunshine again!🌤
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Hopefully it'll be the same with the virus☣ ! We have been to really hard times now...it affects us all in so many different ways and even through in the same....everyone has to stay away from family 💜👨‍👩‍👧and friends👫 and even their lifepartner💑 thats not easy...for noone i think! But if everyone cares a bit now and keeps the #socialdistancing,  i think we will find a way out of all this! But the important thing is we live in a lifetime full of tecnical equipment, so we cam easily talk /videotalk📞💻 to friends and family and keep the contact,  even though we cannot do it personally!
Or you can write a classic postcard ✉ or letter to your grandmom &dad ...they will be happy to get some💝
There are so many ways to keep contact 😄 just use them! 
And dont forget some #selfcare im this rough times! Do something that makes you feel better...! (Take a walk, do some beautythings , eat some fave food , play games /video games , read , watch movies , learn something new 😁 )
Best wishes for you all!!💝🌹
  • After stormy 🌬times there will be sunshine again!🌤
    +
    +
    Hopefully it'll be the same with the virus☣ ! We have been to really hard times now...it affects us all in so many different ways and even through in the same....everyone has to stay away from family 💜👨‍👩‍👧and friends👫 and even their lifepartner💑 thats not easy...for noone i think! But if everyone cares a bit now and keeps the #socialdistancing, i think we will find a way out of all this! But the important thing is we live in a lifetime full of tecnical equipment, so we cam easily talk /videotalk📞💻 to friends and family and keep the contact, even though we cannot do it personally!
    Or you can write a classic postcard ✉ or letter to your grandmom &dad ...they will be happy to get some💝
    There are so many ways to keep contact 😄 just use them!
    And dont forget some #selfcare im this rough times! Do something that makes you feel better...! (Take a walk, do some beautythings , eat some fave food , play games /video games , read , watch movies , learn something new 😁 )
    Best wishes for you all!!💝🌹

  •  20  1  5 hours ago
  • Pause your scrolling and take a breath with us~ when you’ve finished the short breathing practice above, join us in taking a short @USPAIN survey on how COVID-19 has impacted your medical care so we can understand what challenges the pain community is facing in this pandemic. 
Link in bio!
  • Pause your scrolling and take a breath with us~ when you’ve finished the short breathing practice above, join us in taking a short @USPAIN survey on how COVID-19 has impacted your medical care so we can understand what challenges the pain community is facing in this pandemic.
    Link in bio!

  •  20  2  5 hours ago
  • Here's the finished product of my sweet baby nieces new clothes I just made her 😊 & only took me three days to make them 😂 lol but so worth it.. Omg I love them! 👗✂⁣
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She was born on 4/2/20 , came 18 days early and her name is Scotia Capri 👶 Momma is doing well and baby girl is too and is absolutely beautiful! 🤗⁣
⁣
Aunt Dez can't wait to meet you baby girl 😍💚💗 #aprilbaby #quarantinesostayingaway #myfirstniece #sewinglove
  • Here's the finished product of my sweet baby nieces new clothes I just made her 😊 & only took me three days to make them 😂 lol but so worth it.. Omg I love them! 👗✂⁣

    She was born on 4/2/20 , came 18 days early and her name is Scotia Capri 👶 Momma is doing well and baby girl is too and is absolutely beautiful! 🤗⁣

    Aunt Dez can't wait to meet you baby girl 😍💚💗 #aprilbaby #quarantinesostayingaway #myfirstniece #sewinglove

  •  16  1  5 hours ago

Top #raredisease Posts

  • Look who is on his feet again finally!! 🐛🦋♥️ .
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It has been absolutely brutal to be at the hospital during this pandemic, especially since they cut visitors to one and I have no respite (I miss you @starbucks 😭). We’ve been on full isolation from everyone except nurses, docs, and therapists to protect Jack from any exposure to other unwelcome germs. 🦠 I haven’t left the room in at least a week and full disclosure, I definitely hid from Jack in the bathroom yesterday when he was having tough moment and hitting + biting me. 😩 .
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We are super lucky to be on the GI floor where there are no respiratory patients, but it was still scary for me to let Jack walk the hall on our floor. He tuckered out very quickly and is no longer able to walk or stand independently. Regressions are nothing new and we have nothing but time to be at home and work hard once we’re outta here! 💪🏼
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#mamaneedsarespite 
#jackjacklove #highriskcovid19 #pyridoxinedependentepilepsy #metabolicdisorder #rarewarrior #epilepsywarrior #raredisease #neurodevelopmentaldisorders #metabolicsyndrome #PDEwarrior #medicallycomplex #rareepilepsy #stayhomesavelives #raremom #iamthevulnerable #stayhome #geneticdisorder #raregenetics #genetictestingsaveslives #advocatelikeamother #childrenshealthcareofatlanta #epilepsydoesnthavejack
  • Look who is on his feet again finally!! 🐛🦋♥️ .
    .
    It has been absolutely brutal to be at the hospital during this pandemic, especially since they cut visitors to one and I have no respite (I miss you @starbucks 😭). We’ve been on full isolation from everyone except nurses, docs, and therapists to protect Jack from any exposure to other unwelcome germs. 🦠 I haven’t left the room in at least a week and full disclosure, I definitely hid from Jack in the bathroom yesterday when he was having tough moment and hitting + biting me. 😩 .
    .
    We are super lucky to be on the GI floor where there are no respiratory patients, but it was still scary for me to let Jack walk the hall on our floor. He tuckered out very quickly and is no longer able to walk or stand independently. Regressions are nothing new and we have nothing but time to be at home and work hard once we’re outta here! 💪🏼
    .
    #mamaneedsarespite
    #jackjacklove #highriskcovid19 #pyridoxinedependentepilepsy #metabolicdisorder #rarewarrior #epilepsywarrior #raredisease #neurodevelopmentaldisorders #metabolicsyndrome #PDEwarrior #medicallycomplex #rareepilepsy #stayhomesavelives #raremom #iamthevulnerable #stayhome #geneticdisorder #raregenetics #genetictestingsaveslives #advocatelikeamother #childrenshealthcareofatlanta #epilepsydoesnthavejack

  •  378  30  28 March, 2020
  • I want to tell you what I'm going to be doing in April:
Starting tomorrow, April 1st, I'm going to be running a 30-day journaling challenge: The Resilience Journals. Because I am used to being in isolation. For months after major surgery. Then during chemo and radiation. What sustained me then and now is journaling. Or really, doing anything creative.
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Journaling untangled my knots. It woke me up to beauty. It has saved me from me again and again. I don't know how it works; it just does.
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I know a lot of you journal already. Yet I want to invite ALL of you to join me for the month of April to do something creative together, while apart. I think it's an antidote to fear. And a ladder to clarity.
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Turns out that this idea of a 30-day journal challenge is not mine alone. A case of simultaneous discovery. One of my heroes (and a cancer survivor), @suleikajaouad is also doing a 30-day journaling challenge. Check it out and follow her. She’s amazing.
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Here’s the thing. When I found out that she was doing it, I hesitated. I let my idea wilt. Until now. Tonight I realized that the brave over perfect move is to keep going. Do it out of love and joy. Build a mini revolution WITH her in resilience and resistance journaling!
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I’ll be posting different prompts each day here on Instagram and Facebook.
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1-11 minutes of free-writing each morning. Starts tomorrow.
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Journal in the time of corona!
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#joyoverfear #braveoverperfect #fiercejoy
#mycancerjourney #futurecancersurvivor #raredisease #chemo #radiationtherapy #rarecancer #chordoma #cancerwarrior
#back40project #healerwhoishealing
  • I want to tell you what I'm going to be doing in April:
    Starting tomorrow, April 1st, I'm going to be running a 30-day journaling challenge: The Resilience Journals. Because I am used to being in isolation. For months after major surgery. Then during chemo and radiation. What sustained me then and now is journaling. Or really, doing anything creative.
    .
    Journaling untangled my knots. It woke me up to beauty. It has saved me from me again and again. I don't know how it works; it just does.
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    I know a lot of you journal already. Yet I want to invite ALL of you to join me for the month of April to do something creative together, while apart. I think it's an antidote to fear. And a ladder to clarity.
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    Turns out that this idea of a 30-day journal challenge is not mine alone. A case of simultaneous discovery. One of my heroes (and a cancer survivor), @suleikajaouad is also doing a 30-day journaling challenge. Check it out and follow her. She’s amazing.
    .
    Here’s the thing. When I found out that she was doing it, I hesitated. I let my idea wilt. Until now. Tonight I realized that the brave over perfect move is to keep going. Do it out of love and joy. Build a mini revolution WITH her in resilience and resistance journaling!
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    I’ll be posting different prompts each day here on Instagram and Facebook.
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    1-11 minutes of free-writing each morning. Starts tomorrow.
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    Journal in the time of corona!
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    .
    .

    #joyoverfear #braveoverperfect #fiercejoy
    #mycancerjourney #futurecancersurvivor #raredisease #chemo #radiationtherapy #rarecancer #chordoma #cancerwarrior
    #back40project #healerwhoishealing

  •  161  34  1 April, 2020
  • Piper: Raise your voice! ⁣
⁣
With everything going on, it is really easy to feel like the chronically ill or disabled voice doesn’t count. One of the most common questions we are asked is how can others get involved in advocacy and help the world recognize that disabled chronically ill voices count. Well, there is a huge opportunity to get involved coming up that you can participate in from wherever you are! The 2020 census! Taking the census is incredibly important as a person who is disabled or living with chronic conditions. Taking the census ensures that our communities are represented in congress and that our community receives its share of federal resources. The more people are counted, the more resources are available to us! The 2020 census is more accessible than ever! If you can’t fill out the census yourself you can ask anyone you feel comfortable with to help you or contact a census worker for help! You can take the census online at the fully accessible 2020 census website, on the phone with many languages and deaf friendly services, and written in through the mail. The census is made up of 9 easy questions - name, age, gender, race/ethnicity, phone number, number of ppl in your household, etc. Taking the census matters! My state (Michigan) receives about $3,000 per year for every person counted on the census to use to fund schools, health care programs, roads and more. That means more disabled or chronically ill people taking the census will result in more funding for the programs we need! ⁣
⁣
Do you think people with disabilities count? Then join my girl and Me in taking the census to show our country, your state, and county that disabled lives count! You can visit @micensus to take the census and @rootedinrights to learn more about why the census is so important to those living with chronic conditions and disabilities. Do you have ten minutes? Take the census! ⁣
⁣
#CountMeIn #Sponsored #2020Census #Michigan #BeCounted #DoingMiPart @micensus
  • Piper: Raise your voice! ⁣

    With everything going on, it is really easy to feel like the chronically ill or disabled voice doesn’t count. One of the most common questions we are asked is how can others get involved in advocacy and help the world recognize that disabled chronically ill voices count. Well, there is a huge opportunity to get involved coming up that you can participate in from wherever you are! The 2020 census! Taking the census is incredibly important as a person who is disabled or living with chronic conditions. Taking the census ensures that our communities are represented in congress and that our community receives its share of federal resources. The more people are counted, the more resources are available to us! The 2020 census is more accessible than ever! If you can’t fill out the census yourself you can ask anyone you feel comfortable with to help you or contact a census worker for help! You can take the census online at the fully accessible 2020 census website, on the phone with many languages and deaf friendly services, and written in through the mail. The census is made up of 9 easy questions - name, age, gender, race/ethnicity, phone number, number of ppl in your household, etc. Taking the census matters! My state (Michigan) receives about $3,000 per year for every person counted on the census to use to fund schools, health care programs, roads and more. That means more disabled or chronically ill people taking the census will result in more funding for the programs we need! ⁣

    Do you think people with disabilities count? Then join my girl and Me in taking the census to show our country, your state, and county that disabled lives count! You can visit @micensus to take the census and @rootedinrights to learn more about why the census is so important to those living with chronic conditions and disabilities. Do you have ten minutes? Take the census! ⁣

    #CountMeIn #Sponsored #2020Census #Michigan #BeCounted #DoingMiPart @micensus

  •  433  19  3 April, 2020
  • Being vulnerable is OK♥️
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I couldn't talk about being vulnerable until I overcame shame. I didn't want to feel this nor did I want to face it so I emerged myself with distractions. .
The longer I stayed distracted the deeper my depression became and the larger my leg would swell. .
I had to change my mindset in order to change my health. .
After I recognized my vulnerabilities I was able to control my reactions.
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Today, I understand that being vulnerable is simply williness to take risks such as sharing my personal #lymphedema journey. .
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#lymphedemaawareness #raredisease #disease #compression #lymphatics #value #self #change #speakingfacts #neversettle #mytransphormationstartstoday #mindset #vision
  • Being vulnerable is OK♥️
    .
    I couldn't talk about being vulnerable until I overcame shame. I didn't want to feel this nor did I want to face it so I emerged myself with distractions. .
    The longer I stayed distracted the deeper my depression became and the larger my leg would swell. .
    I had to change my mindset in order to change my health. .
    After I recognized my vulnerabilities I was able to control my reactions.
    .
    Today, I understand that being vulnerable is simply williness to take risks such as sharing my personal #lymphedema journey. .
    .
    .
    #lymphedemaawareness #raredisease #disease #compression #lymphatics #value #self #change #speakingfacts #neversettle #mytransphormationstartstoday #mindset #vision

  •  136  10  3 April, 2020
  • Being stuck in doors isn’t all too new to me. When I’m sick this is my happy place so I’m finding it very easy to get a lot done and be productive. I’ve been working on journaling, reading, being creative and spreading happiness even though the world is pretty crazy right now. Remember, at the end of the day we’re all in this together. The thing I think the most is being outside but with the spring rolling around the timing couldn’t be better! I’ve already been hanging out in my backyard and laying in my hammock. Once this corona pandemic is over I’ll have to get in another photoshoot. What are you missing the most during quarantine?
  • Being stuck in doors isn’t all too new to me. When I’m sick this is my happy place so I’m finding it very easy to get a lot done and be productive. I’ve been working on journaling, reading, being creative and spreading happiness even though the world is pretty crazy right now. Remember, at the end of the day we’re all in this together. The thing I think the most is being outside but with the spring rolling around the timing couldn’t be better! I’ve already been hanging out in my backyard and laying in my hammock. Once this corona pandemic is over I’ll have to get in another photoshoot. What are you missing the most during quarantine?

  •  1,039  53  24 March, 2020
  • Monster and Me. Struggles: We don’t need to pretend we are best friends, you and I, but we co-exist in this same space, in this same moment and so our acceptance intertwines.

Concept development art for my children’s book with little me and my monster; a rare and genetic debilitating muscle-wasting condition personified as this monster who is magically attached to me whenever, wherever. Dealing with our struggles can be difficult and we can name and list all the ways it impedes our life, but it’s also important to relish in the good moments and lessons because something can be drawn from everything and these struggles can give us gifts, like empathy and perspective about ourselves and the surrounding world. kamredlawsk.com #kamdraws #childrensbooks #raredisease
  • Monster and Me. Struggles: We don’t need to pretend we are best friends, you and I, but we co-exist in this same space, in this same moment and so our acceptance intertwines.

    Concept development art for my children’s book with little me and my monster; a rare and genetic debilitating muscle-wasting condition personified as this monster who is magically attached to me whenever, wherever. Dealing with our struggles can be difficult and we can name and list all the ways it impedes our life, but it’s also important to relish in the good moments and lessons because something can be drawn from everything and these struggles can give us gifts, like empathy and perspective about ourselves and the surrounding world. kamredlawsk.com #kamdraws #childrensbooks #raredisease

  •  292  15  28 March, 2020