Living with Hereditary Angiodema: My Life was Changed in an Instant, Part Two

Have you read part one of Loukisha’s story? Check it out here!

When I imagined life with my husband and children my plans didn’t include surgeries, walkers, canes, a wheelchair, physical therapy, a Hereditary Angiodema (HAE) disorder, lawyers, doctors, chronic pain, loss of relationships, a laughable legal settlement, ICUs, unemployment, inadequate welfare assistance, homelessness, surmounting medical debt, and physical and psychological threats. Things were definitely unlike movies, that can fast forward through all the painful moments the character has to face, miraculously showing them standing proudly after slaying their demons.

In reality, I had to endure all the anguish and soul-searing circumstances of life, whether the hardships were crafted by my hands or the hands of another.

I didn’t know you could have a funeral without someone actually dying. I have experienced the passing of loved ones, and the loss you feel because they are no longer here. However, I wasn’t prepared nor could I fathom grieving for someone you could see, touch, and hear – a major part of myself. Enduring this kind of loss was confusing, frustrating, saddening and painful. Now imagine not only me doing this for myself – my family and ‘Ohana had to as well.

After everything, I found myself in a place where I needed to personally challenge my definition of what was normal. What made this new challenge even harder was going through all of this while life continued. I had to take time to heal emotionally and spiritually even though I was “broken” physically. Anyone that knows me can attest to the fact that I desire to live a “balanced” life, where everything sits in harmony with serenity.

Just when I thought I couldn’t get any lower, I was saddened to learn there are multiple levels to a pit. In the midst of this revelation I had to truly start rehab – and not just on my body. As I found new caverns and caves in the pit, I also found new levels of peace, strength, and truth.

What I learned about me is that I love feeling the warmth of the sun on my face. I wasn’t created to permanently dwell in the dark.

As I journeyed towards the surface, I could and would grow into someone more resilient. I would say in the past year I have started to enjoy my life in the sun. With the stabilizing force of my faith, ‘Ohana, and a new treatment plan, I’m starting to live part of what I dreamed. I am making plans and not living in a constant state of emergency. My family is learning that they can truly live and not just exist.

No, I’m not healed. I still infuse my HAE medication twice a week. A swelling attack can happen at a moment’s notice. The pain is better controlled but definitely not gone. The joints on my left leg will still freeze, causing me to do a dazzling faceplant. There are days that brushing my teeth and getting out of my pajamas is a huge victory. However, on good days I now enjoy outings with friends, cooking for my ‘Ohana, and speaking to others about the defeats and victories in my life.

I no longer think my body hates me. I think it just likes to act up and be naughty. I don’t see myself as broken anymore. I just have a few special quirks that are unique to me. My kids like to say I am part of the X-Men and that I have mutant powers. Seeing that the type of HAE I have has come from a spontaneous mutation, I believe them.

In light of all that has happened in the past, what’s going on now, and what could be in the future, I know with my faith, ‘Ohana, determination, and a wicked sense of humor I can do more than just endure. I can conquer the struggles of life.

About the Author: I’m Loukisha Olive-McCoy, a mother of two and have been married for 22 years. I’ve been diagnosed with chronic pain and Hereditary Angioedema (HAE for short), which is an extremely rare and potentially fatal disorder. Even though I must do bi-weekly infusions and experience daily excruciating pain, I haven’t lost my appreciation for the simple things in life. I refuse to let my physical conditions define me. I love being a wife, mother, sister, daughter, and friend. I want to show others that living with an illness doesn’t mean that life is over. Follow and like my YouTube channel, Twitter, Instagram, and Facebook page called Loukisha’s Story. There you’ll find personal stories about the beauty and hardships in my life. On my page I encourage people that everyone has a story to tell, so don’t be afraid to tell yours.


To learn more about Hereditary Angioderma, click here.

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