In 2021 I came down with a rare autoimmune disease called CIDP - Chronic Inflammatory Demyelinating Polyneuropathy. My white blood cells started attacking my nerves causing a neurological disorder. Essentially this means that my brain has a hard time communicating with the muscles in my limbs causing muscle weakness, loss of coordination and balance, muscle aches, pains, spasms, and extreme fatigue.
I had just turned 31 when this happened and I suddenly had to navigate the world of disability. I was trying to find mobility aids to help me but my abilities would change almost monthly it seemed. I couldn’t get my numb feet in any pair of shoes except slippers. None of my clothes fit me anymore since I had lost 50 lbs and I needed someone to dress me everyday. It became a hassle to put me into anything besides sweatpants, a t-shirt, and a hoodie.
It wasn’t until two years later that I would see my orthopedic doctor to receive my ankle AFO’s and he told me about Billy’s Footwear and how those shoes would be easier to fit my braces in. I didn’t even know adaptable clothes existed! I started scouring the internet for different products and brands. I started recommending companies to strangers on Reddit whenever someone would ask, whether it was specific or broad. It seemed like most people in the disabled community were having the same problem as me - I didn’t know these things existed!
I asked myself why can’t someone make some sort of directory so that everyone can find anything they might need! And learn about new and upcoming brands or events! It should be easier to find these things instead of searching for hours and hours. Like I have lol I saved you the trouble!
Please enjoy and find things to make your life easier!
Hi there, my name is
So what is CIDP?
Google says…
Chronic inflammatory demyelinating polyneuropathy is an acquired autoimmune disease of the peripheral nervous system characterized by progressive weakness and impaired sensory function in the legs and arms.
CIDP is caused by an abnormal immune response. CIDP occurs when the immune system attacks the myelin cover of the nerves. For this reason, CIDP is thought to be an autoimmune disease. Health care providers also consider CIDP as the chronic form of Guillain-Barré syndrome.
CIDP isn't a fatal condition, and people with it typically have the same life expectancy as someone without the condition.
You may recover entirely from CIDP. Some people do, but they may have symptoms from nerve damage, such as numbness and weakness, for the rest of their lives.
Here’s my Journey
So far..
I had a huge passion for hiking and the outdoors (pre-sick)
Great Sand Dunes National Park (pre-sick)
I became really into rock climbing (pre-sick)
First solo backpacking trip to Eleven Mile, CO (pre-sick)
August 2021. This was my 31st birthday. I started showing symptoms days after this picture was taken.
December 2021. Getting my EMG test. I'm leaning against the bench because I couldn't stand unassisted at this point. I was using a walker.
December 2021. During my EMG test. They electrocute your muscles to measure the response time for stimulation. This test determined that I had CIDP. Very painful though.
January 2022. This was the beginning of the worst.
January 2022. At this point I'm using a wheelchair and doing treatment every three weeks for two days in a row. It takes about 3-4 hours each day.
December 2021. I started IVIG treatment. They would leave a port in me overnight because I have to do treatment over the course of multiple days.
April 2022 The GBS/CIDP walk and roll in Denver. My Denver friends really showed up for me. Forever grateful.
April 2022 GBS/CIDP walk and roll
Another treatment day 2022. I had went from weighing 140 right before being sick to being 92 lbs.
April 2022. IVIG treatment overwhelmed my gull bladder. I had many hospital visits because I would not stop throwing up. I was forced to smile for this picture lol but I was not having fun.
2022. My first steps! From being in a wheelchair. The first time I stood up and could hold myself at eye level again, I cried so hard.
April 2023 using a walker my balance was still really off. At this point I had to relocate to Florida for extra help from family.
October 2022. Building strength to keep working on walking.
November 2022. It's important to vote as a person with disabilities.
These are my ankle AFO's. Since I've gotten these, I've been able to walk and balance. It corrects my foot drop so that my hips aren't working as hard.
January 2024. Using ankle AFO's, but I can walk, balance, and use my hands!
I've been getting back out there! But life is different. Healing for this disease is not linear. It will have ups and downs for the rest of my life.
