Hello everyone and thanks for coming back for another Infusion Night Chat. I often avoid participating in any social media challenges, however the Ten Year Photo challenge actually seemed like a good one. Now don’t get to excited and start sending me chain letters. You will not see me spinning with my forehead on a bat, eating laundry detergent, suctioning my lips to look like a duck, putting on a 100 layers of ____ (you fill in the blank), or any other strange challenges.
When my daughter first suggested I participate in the 10 Year Photo challenge I actually rolled my eyes and huffed at her. She knows how much I don’t like most social media, I mean it took me years to join FB, and we will not even talk about how much I fought to stay off The Twitter (with a fancy r rolling sound) and Instagram. *sigh* I mean I see the use for connecting with people, ohana and friends so that was my motivation to plug in.
For me the 10 year challenge took on another meaning, as I began to think back to what was going on in my life. I was a mother of two young children, married to my college sweetheart for 13 years, and sadly at that time I was fighting for my life. My ohana’s life was turned upside down in a blink of an eye. My husband lost his job, we lived in an apartment that was paid for by a generous church we didn’t know. Without the kindness of extended ohana, charities, and strangers we would have been homeless, no food or clothing. All of this calamity came into our lives like a flood, because of a strange and aggressive disease that almost killed me I didn’t have health insurance, and each hospitalization created multiple bills in the thousands and a few in the millions of dollars. The unpredictability of the strange airway, tongue and face swells made it impossible for me to be left alone, or take care of my young children. Many times my husband paced the floor while our children would hold each other shaking, and crying for they didn’t know if I would die. My only recourse to survive the airway and tongue swells was being put on ventilators, tracheostomies, and month long stays in the ICU. Life was terrifying and we did our best to create a stable, loving, peaceful and consistent environment as possible for our kids.
We were not sure how our lives would change for the better, however we had our Faith, love for one another, ohana and friends to lean on. The kindness of strangers really blew us away for to feel the love and compassion from those that don’t know is beautiful.
10 years later I’m still alive and kicking! The mystery illness has a name (HAE) I actually have 2 therapies one for acute attacks and the other I infuse twice a week prophylactically. I’ve celebrated 2 years being ICU, ER, ventilator, and trach free. I have the honor of writing this blog, I have an online support group for those with HAE with Normal C-1 ( HAE Type 3), a YT channel, The Twitter, and Instagram to share my stories.
Ruconest en Cinryze