Met dank aan Beeldscherm, vanmorgen op het februari-draadje.
Loukisha's Story
Gisteren om 0:23 ·
Hello everyone and I’m glad your back for another #Ruconest Thursday. I decided to take a walk on the wild side and shake up infusion Thursday. What better way to challenge myself than to go on a trip. And by trip I don’t mean hopping in the car and braving a trip to Target. When I say trip I’m talking about packing a suitcase, being patted down by a TSA agent, and enduring 21 questions of what’s in my bag. Since I’m in a wheelchair I needed extra help to board the plane. Normal size wheelchairs are to wide to fit down the aisle, so the airline supply a very compact wheelchair to transport people to their seats. Two kind gentlemen show up with a wheelchair that looks more like a highchair to transport me to my seat. The aisle is so small that for a brief moment I had flashbacks of my birth. My reward for surviving my second birth is a seat that appears to be made for toddlers, not full grown adults. For some reason I was assigned the middle seat, and I feel like a sardine because I’m crammed between two people, one being my husband. The gentleman to my left must have dunked every piece of his clothing in a vat of cologne. Sadly his cologne didn’t get the memo about staying away from others unless you’re invited to start a conversation. Since holding my breath for 3 hours was completely out of the question, and my suggestion of moving his seat to the wing of the plane was not a viable option. So I was stuck with the man and his cologne. Not only was his cologne insisting on being my friend, he kept opening and closing the window shade randomly. I had to keep myself from laughing , because his idea of a soothing movie was the horror movie IT!
Even though I was being exposed to multiple triggers for an HAE swell #Ruconest passed the test with flying colors! I haven’t travelled by plane in 10 yrs after being diagnosis with HAE. Now, I’m thousands of feet up in the air wedged in a seat, with a twitchy, gum popping, horror movie watching, cologne drenched man and I’m not swelling. I’m currently infusing in a hotel room for a HAE conference and this is a GIANT VICTORY for me! In the past one of those triggers would have caused vicious face, tongue and airway swells. With the help of #Ruconest I faced this challenge and prevailed! In my mind the best way to could express my gratitude is to burst out in song, while people are singing back up in 4 part harmonies. In my mind the icing on the cake would be a large group of people dancing with great enthusiasm in brightly colored clothes like in a bollywood movie.
I would love to hear you’re stories of how HAE impacts your lives. Do you pass up opportunities because of the threat of swells? Does your current treatment medications make it possible for you to travel? I would love to hear from you, so please share your stories, questions or comments in the section below. And remember everyone has a story to tell, don’t be afraid to tell yours.
Reactie van Beeldscherm:
na 10 jaar weer in een vliegtuig dankzij Ruconest.....