The Kiss Campaign
It all started about 5 years ago when I woke up in the middle of my karate studio 6 hours into testing for my black belt. The room was so hazy and I felt so dizzy upon standing. I wanted to keep going but my body just wouldn’t let me continue. From that point on it was a two year long period that I felt like I would get a heart attack at any time. San Diego Children’s Hospital had no idea how or what to do with my body. The first year they blamed it on dehydration, stress, and “maybe that’s just the way your body works”. My pediatrician never gave up on me and kept sending me to specialist after specialist. My body became weaker and weaker. I would stay up all night in extreme pain, but I kept pushing myself to go to school and still managed to get good grades despite missing 50+ days of school. I study for hours and hours to stay on top of work that I was absent for or wasn’t feeling well enough to do the night before. First, the diagnosis came of Fibromyalgia. Thanks to medications, I finally got some sort of relief, but it didn’t explain the tachycardia, passing out, or complete exhaustion I was experiencing.
My parents were desperate for help and with the help of family and friends we went to the Mayo Clinic in 2013, where I was diagnosed with severe POTS Syndrome/Dysautonomia and anemia. My autonomic nervous system doesn’t function correctly. Everything my body is supposed to do on its own… doesn’t work. The Mayo Clinic told me there was no cure for either illnesses, but I still received a good treatment plan to help with my symptoms. I was given a beta blocker to help with the heart and blood pressure issues, and was told to drink 6 liters of fluid and eat 10 grams of salt a day! This would help with my blood volume and help regulate blood flow in my body. My mom, for the first time in 2 years, was able to return to work and life was good… for a while. Things started going downhill during the start of the summer before my junior year. I reacted to an antibiotic I was on from a sinus infection and caught C. diff. C-diff is a bacterial infection that eats away at your stomach and intestinal lining. My digestive system was literally being eaten away by flesh eating bacteria… this led to a year of pain, vomiting, hair loss, and the inability to eat. Because of these issues, I’m not able to drink the 6 liters a day and eat the salt I needed to, so my POTS got out of control. It’s a vicious cycle that all relates to Dysautonomia. If I don’t get my POTS under control, it triggers one illness, which triggers another illness, etc. Back to square one.
I was eventually diagnosed with Severe Gastroparesis. My stomach, small intestine, and large intestine are all practically paralyzed with a 90% delay; and the muscles in between these organs do not communicate the way they are supposed to (Thanks, Dysautonomia!). Every time I eat something, I feel miserable afterwards. It’s made family parties, restaurant visits, and social events more difficult. The doctors at Rady’s had me try some different medications to help with the Gastroparesis, but I had an allergic reaction to every single one! My parents and I wondered why I was reacting to so many things. The doctors said there was not much more they can do, so they placed a PICC line in so I can receive the fluids and infusions I need. It didn’t help much, but it was something.
Going to school became an extremely hard task. I have to carry around my infusion backpack, and am constantly feeling countless symptoms at all times. The reactions I received seemed to be the start of a new issue… I get episodes where I break out in hives, cannot breathe, and my muscles get extremely weak. It’s as if my skin is on fire, and I’m unable to move. I feel as if I have no control over my body. Sometimes it’s from an allergic reaction, and other times it happens randomly. I sometimes describe it as being “allergic to myself!” My allergist tells me I have Mast Cell Disease, but I cannot get off the antihistamines to properly undergo testing. I live on IV fluids, a bucket of medications, and smoothies. Doing even the smallest tasks is extremely difficult, but I am determined to continue doing the things I love with the people I care about!
The team of caring physicians has concluded that I desperately need to go back to the Mayo Clinic for consultation, testing, and permanent decisions about a PORT, G Tube, or J Tube. Now, this isn’t a cure. There isn’t a cure for my illnesses. But hopefully, the Mayo Clinic will find me a treatment plan that will allow me to live a normal life. So I can keep being on stage, and enjoying the little things that teenagers should be able to enjoy.
Unfortunately, our insurance doesn’t cover the thousands of dollars in Mayo Clinic costs and my parents spend $800.00 a month in my care here at home. The Kiss Campaign is intended to promote awareness on illnesses that connect to Dysautnomia and fundraise for the costs so I can go to the Mayo Clinic and get the answers I need. My body has drained my parents financially and physically, but they still push me to achieve my goals and live a good quality of life. All of these illnesses are a part of me, but they are not who I am. They have taught me compassion, strength, and patience, tested my limits, but they will not beat me!
I am not “the girl who is sick.” I am not defined by my illnesses. I am me.
The pride I feel for my community and for the selflessness of everyone who attended or donated through here is too strong for words. The event is over, but the campaign still rages on. Alena has an appointment at the Mayo Clinic on July 23, 2015, and through the selflessness of others we have $6,000 to help. However, we are unsure of how much we will need exactly, and $10,000 was a guesstimate. If we go over the limit or over what we need, then it all goes to the seemingly endless piles of bills from the past as well as the soon to come ones. Ladies and gentlemen, together we can continue to help her and get her to a place of contentment. By simply reposting this on Instagram, sharing it on Facebook, or telling your friends and family about the campaign, we can open whole new doors and bring more people into the family.
If you have any ideas for the NEXT kiss campaign event, please don't hesistate to let your voice be heard! You can email kiss email@example.com to get in touch with me and let your ideas be heard.
Thank you thank you thank you.
I cannot believe the selflessness of the community. This is so humbling and I am touched to the point of tears. Your generosity is beyond words.
We are definitely feeling the love, and we are reflecting it back to you!