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#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 🙏🏼 Please help pray with me for continued progress and getting closer to a healthier and stronger me!!! 💜🙏🏼💪🏽💘 #gbs #cidp #guillainbarresyndrome #chronicinflammatorydemyelinatingpolyneuropathy

#workouttime #gottotakeiteasythough I'm back at zumba again. I've been told no zumba but it makes me feel better so I'm just going to take it easy. #chronicinflammatorydemyelinatingpolyneuropathy It has a name now. Official diagnoses today. It's bad but it could be worse. Finally the doctors paying attention to me. He's sending me to a specialist so it's a start. It's not going to get better but at least we can try and stop it getting worse faster.

My body had different plans this week. I think all too often we try to depict our lives as being perfect. It's ok to struggle and highlight obstacles at times. Right now I'm working on radical acceptance of living with a chronic illness. At times it sucks, and I cry my eyes out. Other times I'm thankful for my medically creative body. I've become an expert in my condition, and I've seen the beauty in the compassion shown by people I hardly know.
My husband has shown that he genuinely meant what he said on our wedding day "in sickness and in health." He's had to give lots of love to me during these tough times. We are growing through what we go through one day at a time. This week has been terrifying to say the least, yet it has allowed me to see even clearer how kickass my loved ones are and that my strength is far greater than I thought 🔥

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

Omg!.. So as I'm editing my #video I realize this may not be such a great method of unloading my #wheelchair! Haha..Yes I did run over my foot and no I didn't feel it(I can't feel my right leg period).. Hahaha #wheelchairlife #humor #funny #notfunny #behappy #enjoylife #progressiveneurologicaldisorder #chronicinflammatorydemyelinatingpolyneuropathy #oops

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Omg!.. So as I'm editing my #video I realize this may not be such a great method of unloading my #wheelchair! Haha..Yes I did run over my foot and no I didn't feel it(I can't feel my right leg period).. Hahaha #wheelchairlife #humor #funny #notfunny #behappy #enjoylife #progressiveneurologicaldisorder #chronicinflammatorydemyelinatingpolyneuropathy #oops

#driving with #handcontrols.. I'm going to be uploading a #video either to #YouTube or Instagram after I edit it.. Couldn't start or stop the video as i was driving..lol.. So started it before and ended it at my destination :) 🎥✨YouTube link in profile ✨🎥#wheelchairlife #wheelchair #progressiveneurologicaldisorder #chronicinflammatorydemyelinatingpolyneuropathy #cidp #educationalpurposes

Hahaha.. I'm stupid for spending money on something i knew wouldn't work out.. These boards are like 5 tons each.. I can't even pick up my #smartdrive or #wheelchair.. How would i possibly pull the ramp out and get my chair up when I can't lift this while in front of it.. Haha image while already transferred into the van?!?.. Guess I'm still going to be dependent on anyone else!.. #mylife #badday #frustrated #weakness #progressiveneurologicaldisorder #chronicinflammatorydemyelinatingpolyneuropathy #ugh

*6/24/2008* How many of you who suffer from GBS or CIDP can pinpoint the exact day or even moment you became ill? I found this picture my dad took of me at our hotel at Lake Texoma. This was the day I cut my knee on a metal ramp down to my kneecap. 18 stitches, a tetanus shot and a couple of strong pain killers later here I was, a drugged up limping mess. After getting my stitches I told my dad I wanted to go back to the lake to fish some more and I ended up passed out on a picnic table from the pain meds I was prescribed. The next day when we woke up to go back to the lake I decided to stay back at the hotel to rest and that's when I noticed the tingling. That tingling was my immune system attacking my nervous system. Little did I know within a couple of weeks I would be completely paralyzed laying in the ICU on ventilator. #guillainbarresyndrome #guillainbarresurvivor #gbs #chronicinflammatorydemyelinatingpolyneuropathy
#cidp #peripheralneuropathy #autoimmunedisease #plasmapherisis #ivig #chronicillness #chronicpain #spoonie

Sitting here waiting for the kids to run into the store.. The sun was setting and love how crazy #cool my eyes look in that lighting 👁️👍😊 #sun #bright #eyes #blackhair #selfie #wheelchairselfie #driving with #handcontrols #honda #wheelchair #progressiveneurologicaldisorder #chronicinflammatorydemyelinatingpolyneuropathy

My body had different plans this week. I think all too often we try to depict our lives as being perfect. It's ok to struggle and highlight obstacles at times. Right now I'm working on radical acceptance of living with a chronic illness. At times it sucks, and I cry my eyes out. Other times I'm thankful for my medically creative body. I've become an expert in my condition, and I've seen the beauty in the compassion shown by people I hardly know.
My husband has shown that he genuinely meant what he said on our wedding day "in sickness and in health." He's had to give lots of love to me during these tough times. We are growing through what we go through one day at a time. This week has been terrifying to say the least, yet it has allowed me to see even clearer how kickass my loved ones are and that my strength is far greater than I thought 🔥

Love this description @holly_after_gbs shared! Hard for healthy people to understand the fatigue that comes with day to day activities. I am constantly thinking about the exhaustion, pain, and how I'll feel later with everything I do. But, that's my new 'normal'!!! I also have therapists that also use "The Penny Theory" 😘 #spoonie #chronicillness #chronicpain #chronicfatigue #spoontheory #gbs #guillainbarrésyndrome #cidp #chronicinflammatorydemyelinatingpolyneuropathy

Went to Walmart and tried out the #smartdrive.. It didn't even reach 100% speed!! It's way too fast! Haha I think 30% is fast! But dang this thing is #amazing! #wheelchair #video #fun #enjoylife #progressiveneurologicaldisorder #chronicinflammatorydemyelinatingpolyneuropathy #autoimmunedisease #behappy #blessed

Its today it's today!!! Got my new #wheelchair with #smartdrive !! Now to test it out!.. So far the seat is going to take some getting used to.. But the back feels amazing!! #wheelchairlife #progressiveneurologicaldisorder #chronicinflammatorydemyelinatingpolyneuropathy #rogue #kimobility #soblessed #happy #smile #behappy #enjoylife #excited #sweet

Sad o report no #ivig today.. My vitals weren't stable and I need to make sure my tooth infection is completely gone before I can start.. Anyways here is my update #chronicinflammatorydemyelinatingpolyneuropathy #cidp #progressiveneurologicaldisorder #wheelchair #wheelchairlife #imloopy #haha #funnyface #smile #behappy #mylife still #blessed and I have a pretty #cool #nurse :)

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