Loukisha shares her journey with hereditary angioedma (HAE).
Living with a rare disease you’ll experience highs and lows.
Unfortunately the moments of struggle are unavoidable; all you can do is decide how you’ll face each challenge. Tears are definitely an understandable response, while other moments you’ll find humorous– even though it may be slightly dark or twisted. The possibility to experience a combination of tears and laughter can definitely happen. Oops! I forgot to mention that there are infinite combinations of emotions that are all mashed together.
One of my struggles is uncooperative skin and trying to put in needles when I do my bi-weekly infusion. The needles don’t want to go in and my skin refuses to participate. As I desperately try to start an IV, I go through an emotional combinations of crying and making deals with my skin. I even tried giving my skin a pep talk. With each unsuccessful attempt my irritation grows, I mutter and threaten that I would go without the infusion. However, I cannot skip an infusion, so it was an empty threat. My skin called my bluff! Without another option, I proceeded to try more praying, laughing at myself, crying again, and until I was reduced to desperate bargaining. After 10 sticks I was successful. In response I sang with great gusto a chorus from Handel’s messiah, Hallelujah.
At this precise moment I had a choice. I could continue to feast on the smorgasbord of negative emotions. Or, I could decide to push away from the table not eating one more bite. Sometimes it is easier said than done when the physical and mental pain behave like thugs and kick the door in and proceed to pounce on you mercilessly. In those moments, all the pain, anguish, and suffering pile on me and bring other invaders along to spectate or participate. Sometimes I scream, and shake all over because it hurts. I dislike that my only defense is to ball up in fetal position while I weep and sob, hoping the medicines will stop the pain. When it lasts for hours or even days, my heart aches, as my husband and children weep and watch powerlessly while I writhe in pain in the floor or on my bed. Other times I’m grateful because the medications work and the pain leaves after 30 minutes or an hour. On those days I’m able to fight against the invasion with medicines and distractions like prayer/meditation, music, movies, heck, even coloring, and I’m elated. Over the years I’ve learned to treasure and hold tightly to these very moments for they keep me grounded when nothing works and all I can see and hear is my disease.
I’m familiar with the effects of disease like, sadness, frustration, isolation, sleeplessness and all their relatives. One thing I noticed about myself is when I’m bum rushed by pain and negative emotions, there’s a fail safe that somehow kicks in willing me to fight back. My love for my ohana, friends and myself refuses to let me accept defeat.
I’ve learned through prayer, meditation and relationships that victory doesn’t always look like standing on a mountain top with your hands raised to the sky. Victory can be opening your eyes and taking a breath. Perhaps it is brushing your teeth, and getting out of your jammies. A victory could be laundry, even though I don’t enjoy doing it. A victory can be cooking dinner for your loved ones. A victory could be being a bed warrior armed with a laptop posting a message, video, or story letting others know that you’re not alone.
I cannot run away from the battle, however I can always find and declare a victory.