#chronicinflammatorydemyelinatingpolyneuropathy

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I lost over 25 lbs. of muscle when I was diagnosed with #chronicinflammatorydemyelinatingpolyneuropathy (#CIDP) that further made me feel uncomfortable with my body. I recently started going to the gym with a personal trainer to build better confidence in self which seems promising...But I just want you to know that I've now changed my name to #SojuPapi. Also, sorry mom!

HUGE Step! Treatment #29 is a HALF Dose!!! This is my first half dose and am trying to wean and taper down off treatments πŸ™πŸΌ Please help pray with me for continued progress and getting closer to a healthier and stronger me!!! πŸ’œπŸ™πŸΌπŸ’ͺπŸ½πŸ’˜ #gbs #cidp #guillainbarresyndrome #chronicinflammatorydemyelinatingpolyneuropathy

Thank you friends and family for continuing to be wonderfully supportive of Faithy, and her journey. She has a couple more visits to CHLA for IVIG infusion and follow up appointments with her amazing doctor. Sometimes I look back at the pictures and videos, and wonder how we got through this. I am immensely grateful to EVERYONE who came to visit, brought food, bought a coffee/juice, sent a card or a gift, called, texted, emailed, clicked "like", messaged, prayed, and just thought of us even if it was just for a moment. I love you all....... B #chla #chronicinflammatorydemyelinatingpolyneuropathy #CIDP

My new #bravelets came! This one in honor of my dad who lost his battle with #CIDP almost two months ago at age 61. If you're unfamiliar with this rare disease and want to know more about it visit http://www.gbs-cidp.org/ #chronicinflammatorydemyelinatingpolyneuropathy #gbs #cancersucks

8 years ago today I was admitted to the ICU for Guillain Barre Syndrome. By that point I couldn't walk and could barely lift my arms. Not too long after admission my right lung collapsed and I was put on a ventilator. The Guillain Barre had spread so much that it took a month just to start moving my face again. A few months into my diagnosis my progression had really slowed down and I had a spinal tap done and was re-diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy. My journey hasn't been easy and it's something I'll have to battle for the rest of my life. #guillainbarresyndrome #GBS #GBSawareness #chronicinflammatorydemyelinatingpolyneuropathy #CIDP #CIDPawareness

I am so exhausted and physically drained, walking just to the bathroom kicks my booty...but I WILL keep pushing forward. Some days are my good ones, and my bad ones seem even lower - but I have to change the way that I feel sorry for myself. I NEED to keep trying! πŸ’ͺ🏽"As long as you feel pain, you’re still alive. As long as you make mistakes, you’re still human. And as long as you keep trying, there’s still hope." πŸ’˜ #gbs #cidp #guillainbarresyndrome #chronicinflammatorydemyelinatingpolyneuropathy

MOST RECENT

Hands down, best massage πŸ™ŒπŸ½ I've been seeing Shana 1-2 times a month over the last year - she never disappoints! I feel AMAZING after each session πŸ™ŒπŸ½ #massage #massageenvy #massageenvyspa #gbs #guillainbarresyndrome #cidp #chronicinflammatorydemyelinatingpolyneuropathy

New Blog Post! Trust the timing of your life... Link in Bio!!! πŸ’›πŸ’›πŸ’› #gbs #guillainbarresyndrome #cidp #chronicinflammatorydemyelinatingpolyneuropathy #blogger #trustthetimingofyourlife #thebravechick #chronicillness

I am overwhelmed with love and joy from this weekend!!! ❀️❀️❀️
We had the wonderful Laps of Love, Inc. annual event. I was honored to be nominated along with Kelley Berglund who is a beautiful woman and fighter inside and out! πŸ’˜ I am so lucky to have met you and will continue to think of you and your family often and pray daily β€οΈπŸ™πŸΌ
I am so blessed to have so much love and support. I honestly COULD NOT have made it through these last 1 1/2 years without these people...even those not pictured! I am SO blessed to have also moved into a community where Derek grew up in, who has so much support and kindness to give - even when I wasn't from here! Thank you to all of those who traveled, set up the event, celebrated this weekend and threw a party after! My husband, family, in-laws, friends, community, etc. have truly been such a blessing for me. My heart is so full from all of this. I can't thank everyone enough!!! Love you all! ❀️❀️❀️ #teamelissa #gbs #cidp #guillainbarresyndrome #chronicinflammatorydemyelinatingpolyneuropathy #chronicillness

Treatment kicked my a$%! I am so weak and it is difficult to do much without assistance. There are highs and lows, but these lows suck. I hate being like this. I know my body is trying to adjust and transition...but it's hard to keep a smile on and be positive. Ill just keep pushing through as best I can, and rest to recover. I have to listen to my body and rest. Staying home today, Sunny knows when I am sick and don't feel good. These extra cuddles help πŸ’œ#gbs #cidp #guillainbarresyndrome #chronicinflammatorydemyelinatingpolyneuropathy #chronicillness #cockapoosofinstagram #cockapoopuppy

Made a surprise visit to my GBS/CIDP sister Miss Rachael today! Even brought the puppies along too!!! Keep up the amazing work girl - you are so strong! We love you! πŸ’˜πŸ’˜πŸ’˜ #gbs #cidp #guillainbarresyndrome #chronicinflammatorydemyelinatingpolyneuropathy #chronicillness #cockapoopuppy #cockapoosofinstagram

#30! Kiss that treatment bag GOODBYE! πŸ’‹πŸ’ͺπŸ½πŸ’œβœŒπŸΌοΈπŸ’‰ (If everything continues to improve while I wean off treatment) I'll meet with my neurologist in 2-3 months and touch base to make a next step of action! These next few months will be challenging having my body adjust, so I have to take it easy....but gosh, this gives me hope and motivation!!! Over 1 1/2years, I'm starting to see a glimmer of light ✨ I hope this doesn't jinx it but I am so hopeful! I have a loooong road ahead since I'll have this my whole life, but I am fighting! πŸ’ͺ🏽 #gbs #cidp #guillainbarresyndrome #chronicinflammatorydemyelinatingpolyneuropathy #chronicillness

Finally out to catch some sun β˜€

been experiencing #chronicnervepain since April and was pre diagnosed with #cidp 😣 still waiting on my second treatment πŸ’‰ but I'm #smilingthroughthepain
#cidp
#nervepain
#neuropathy
#raredisease
#invisableillness
#autoimmunedisease
#chronicinflammatorydemyelinatingpolyneuropathy

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