#chronicinflammatorydemyelinatingpolyneuropathy

MOST RECENT

My day was tough! We could not get my iv set, after over an hour, several sticks a ruptured vein and some tears we finally got a vein to open up and keep the iv in. Thanks to this kitty for snuggling me during that totally bummer process and for the kisses 😽💕 Through out my treatment my vitals were unstable and my heart was not cooperating with dangerously low BP and heart rate.. My nurse said "yeah you are so off today" so many times I lost count. I did my yoga and meditation this morning, I used my oils to help my veins, I hydrated, did all my self care and I felt ready....
Some days no matter what we do things are hard. That okay. I used all my tools, did my best and am proud of myself for getting through a totally horrible no good day. I'm going to go eat some chips now, my nurse said I needed as much salt as possible so.... Silver lining 🤷🌻
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#cidpwarrior #cidpstrong #cidp #chronicinflammatorydemyelinatingpolyneuropathy #chronicallybadass #ivig #primaryimmunodeficiency #commonvariableimmunodeficiency #immunosuppressed #immuneglobulin #toughday #spooniestruggles

It's nothing but good vibes and a happy sleepy Sarge on this infusion morning. My nurse is on her way and my body is happily awaiting my much needed dose of #ivig ❤️
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#chronicinflammatorydemyelinatingpolyneuropathy #cidp #cidpgbs #primaryimmunodeficiency #commonvariableimmunodeficiency #cidpstrong #cidpwarrior #goodvibes #gratefulmorning

Feel free to use these for GBS/CIDP Awareness Month In May. For better quality ones go to my Facebook page- The Gimpy Girl Who Could .
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#guillainbarre #guillainbarresyndrome #thegimpygirlwho #thefacesofguillainbarre #CIDP #chronicinflammatorydemyelinatingpolyneuropathy

Feel free to use these for GBS/CIDP Awareness Month In May. For better quality ones go to my Facebook page- The Gimpy Girl Who Could .
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#guillainbarre #guillainbarresyndrome #thegimpygirlwho #thefacesofguillainbarre #CIDP #chronicinflammatorydemyelinatingpolyneuropathy

Feel free to use these for GBS/CIDP Awareness Month In May. For better quality ones go to my Facebook page- The Gimpy Girl Who Could .
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#guillainbarre #guillainbarresyndrome #thegimpygirlwho #thefacesofguillainbarre #CIDP #chronicinflammatorydemyelinatingpolyneuropathy

Feel free to use these for GBS/CIDP Awareness Month In May. For better quality ones go to my Facebook page- The Gimpy Girl Who Could .
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#guillainbarre #guillainbarresyndrome #thegimpygirlwho #thefacesofguillainbarre #CIDP #chronicinflammatorydemyelinatingpolyneuropathy

Feel free to use these for GBS/CIDP Awareness Month In May. For better quality ones go to my Facebook page- The Gimpy Girl Who Could .
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#guillainbarre #guillainbarresyndrome #thegimpygirlwho #thefacesofguillainbarre #CIDP #chronicinflammatorydemyelinatingpolyneuropathy

Guys! We made our goal of recieving 30 new stories to feature on the blog this year for The Faces of Guillain Barré and CIDP for GBS/CIDP Awareness Month in May.

I'll keep accepting any stories that meets all the requirements if they are emailed to justinesgbsjourney@gmail.com by April 28th. .
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#guillainbarre #guillainbarresyndrome #thegimpygirlwhocould #thefacesofguillainbarreandcidp #GBS #CIDP #chronicinflammatorydemyelinatingpolyneuropathy

Treatment #36 underway on Friday with my biggest supporter ❤️he is usually behind the camera but he needs some credit and love too for everything he has been through these last 2.5 years with me being sick! Check out my blog @the.brave.chick #cidp #chronicillness #chronicfatigue #gbs #guillainbarresyndrome #guillianbarresurvivor #chronicinflammatorydemyelinatingpolyneuropathy

#repost from @the.brave.chick
You got this @mrs.elissakaybecker!
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I had my 2nd IVIG Plasma Treatment tuesday! This is my AMAZING nurse who comes to my home teaching me and spending afternoons with me while I get my treatment at home! I’m learning how to give them to myself with her wonderful help. So far so good! ❤️ #hizentra #immuneglobulin #immuneglobulininfusion #gbs #guillianbarre #gullianbarrésyndrome #hizentra #cidp #chronicinflammatorydemyelinatingpolyneuropathy #chronicinllness #chronicfatigue

I had my 2nd IVIG Plasma Treatment tuesday! This is my AMAZING nurse who comes to my home teaching me and spending afternoons with me while I get my treatment at home! I’m learning how to give them to myself with her wonderful help. So far so good! ❤️ #hizentra #immuneglobulin #immuneglobulininfusion #gbs #guillianbarre #gullianbarrésyndrome #hizentra #cidp #chronicinflammatorydemyelinatingpolyneuropathy #chronicinllness #chronicfatigue

So tired.... I don't need pity but I do need to straighten my crown every day I stumble. May God bless all of you with the strength and the courage to push on. Have faith my friends! I will get through this! ♡♡💎💎💜💜♡♡☆☆☆☆☆☆☆ #chronicinflammatorydemyelinatingpolyneuropathy #hempworks #CIDPsucks #cancersucks #guillianbarresyndrome #painisprogression #domore #loveyourself #thestruggleisreallyreal #metime

Mommah’s boys before her nap. I feel like 💩 today. Migraine in my spine and nerve pain in my head. But the kids are taking care of me #mommahsmusings #cidp #chronicinflammatorydemyelinatingpolyneuropathy #systematiclupuserythematosus

The lawn people are coming tomorrow so Freddie and I helped Dad clean the yard. He’s so brave with my wheelchair. #sirfredrickderhund #cidp #wheelchair #dogsofinstagram #mommahsmusings #chronicinflammatorydemyelinatingpolyneuropathy

I have been kinda absent on social media recently... Spring is the hardest time of year for me. I go into a bad flair every year.
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Right now I'm in a lot of pain and have a tremor that won't let up... I hermit when things get hard. ❤️ you all 🌻
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#cidp #chronicinflammatorydemyelinatingpolyneuropathy #neuropathy #tremors #flairday #fibromyalgia #myalgicencephalomyelitis #cfs #chronicpain

This morning I started my first round of #iviginfusions that I'll receive over the next 4 days and then again for 2 days every 3 weeks for at the very least the next 3 months. I was finally diagnosed with #chronicinflammatorydemyelinatingpolyneuropathy also known as #cidp just a few weeks ago. I say "finally" because it's been 10 long years since I had my first partial paralysis, 5 since my complete paralysis, and I now live every day in chronic pain and fatigue. It's empowering to finally have a name for what has been wreaking havoc in my life for so long. I have faith I'm on the path to finally putting this disease into remission. #cidpawareness #ivig #cidpsucks #cidpwillnotwin #nottoday #survivor #timetomoveon

I have alot to do to prepare for GBS/CIDP Awareness Month that starts on May 1st.

I'm putting together a Facebook page for "The Faces of Guillain Barré", finishing up some joint blog posts that use your answers. And of course editing and putting together the stories I received to be featured!

I'm still accepting stories. If you would like to be featured, let me know!
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#guillainbarresyndrome #GBS #guillainbarreawareness #CIDP #chronicinflammatorydemyelinatingpolyneuropathy #thefacesofguillainbarre

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