my story

I am an old soul with a young heart. I am born, raised, and living in Orange County but have a great desire to see and experience many corners of the earth. I am so grateful for parents who exposed me to other cultures, ways of life, and adventures. I was raised as an only child (my amazing half-brother, Crosby, was 18 when I was born and moved out shortly thereafter). I couldn't love my parents any more than I do. I always wished I had more siblings, so as a child I forced found myself in my friend's families who had lots of kids. My parents exposed me to every possible activity, from baton twirling to karate to soccer to art classes. I think this is part of the reason that I value balance and find joy in so many things. I fell in love with dance at a very young age, joined my local children's theater a few years later and became a professional actor and choreographer as a teen. I modeled for a few years and enjoyed my time on set, but encountered the cliche people and sometimes negative experiences that surround the industry. I am also a huge nerd. I am currently a student of political science and psychology at Chapman University. 

I spent a few years as a young teen testing the wild child waters. I realized quickly that my spirit was not meant to be caught up in that sort of craziness. I got right with myself and with God and decided to live a life full of love, goodness, and good pursuits. I was a normal girl.

September 5, 2004 changed everything that was normal about my life. I woke up in pain one day and that pain hasn't gone away since. I've had 12 surgeries and have been facing multiple severe, rare, and chronic conditions. My main illnesses are chronic pancreatitis, compressed celiac artery syndrome (due to median arcuate ligament syndrome), endometriosis, and Meniere's disease. These are what cause a majority of my debilitating pain. 

Here's the low down on these crazy things that have invaded my body. Put on your Grey's Anatomy hats and pretend you understand every word of this. Yay, anatomy! Yay, medicine! Yay, big words! (If nothing else, chronic illness at least comes with the door prize of learning impressive things about the human body).

With the pancreatitis, my pancreatic enzymes (incredibly strong natural chemicals that are used to break down food) back up into my pancreas and injure the tissue of the organ instead of secreting into my intestines for digestion. After years of this process, my pancreas shows discoloration, divots, and lesions, all of which are irreversible. I take synthetic enzymes when I eat to help with digestion, which ideally means that my pancreas won't need to produce as many of its own enzymes so that less damage will be done. The other goal of taking enzymes is to help with better absorption of nutrients. Because my real enzymes are backing up into my pancreas, pancreatitis often leads to malabsorption which can cause many gastrointestinal issues and is not good for my overall health and energy. Short of a miracle, this condition will be with me for the rest of my life and may continue to worsen. The pain from pancreatitis is excruciating and mine is constant. It's both easy and difficult to imagine, as it is basically an organ being eaten alive. Strange, I know, but I think that this is the easiest way to imagine it. I've had four surgeries to correct my pancreatic ducts and the surrounding tissue, none of which have helped with pain relief nor been effective in stopping any further damage. Any sort of pancreatic surgery is dangerous because of how sensitive the pancreas is. We have realized that the pancreas is really the great unknown of the body. Many doctors know little about it and I have actually been asked to leave two doctor's offices because I have chronic pancreatitis and they did not feel comfortable having a patient with this condition. I admired their honesty. My mom hates when doctors or staff make this statement, but we hear it often: "don't mess with the pancreas!". Messing with it is likely to make conditions worse, so we have stopped for now. 

My other major problem has been my crushed celiac artery, which stems off of the aorta in your upper abdomen. The branch of the celiac was crushed by a ligament from my diaphragm (most likely since birth, but it wasn't discovered until I was 18). I had the ligament and surrounding nerve ganglia removed but the artery itself was permanently damaged and was only allowing 5% blood flow to my major upper gastrointestinal organs. An angiogram and angioplasty followed but didn't make a difference in the blood flow or the pain. Miraculously, my body created other tiny arteries over the years and even started pushing backwards through another big artery to compensate. You should have seen the ultrasound tech's face when he discovered this! God and the body are miraculous. Two years ago, after much prayer, many serious conversations, and a dash of "why not?", we decided to have the damaged part of the celiac artery cut out completely. It was a big reconstructive surgery that left me with months of recovery, a gnarly scar and kind of made me feel like a superhero knowing that my organs were on my outsides for a few hours. I was so blessed to have a flawless surgery, but there was never any guarantee that it would help the pain. The nature of some of my pains changed a bit, but started to return a few months later. I found out last year that the blood flow is restricted again, which they believe is from scarring inside the artery this time. I still haven't made a decision about how to handle this next step, but a stent will likely be in my near future. 

I also have endometriosis, which causes the uterine lining to grow in other parts of the body. Pain, nausea, cycle complications, and infertility are some of the effects. This condition impacts a decent percentage of women. I received treatment for it years ago and now the severity of the pain comes and goes, but the condition has kind of fallen by the wayside with everything else going on. This condition has come a long way in its diagnosis and understanding but still has big strides to make. I will add for the record and for all my endo sisters: yes, the pain is real and can be nearly unbearable. It is not just bad cramps. It is not something that a Pamprin will cure or even touch. It is not easy to deal with. 

About three years after I got sick, my appendix ruptured and was not caught in time. I survived by the grace of God. His faithfulness to my family during that time is a huge part of my testimony. I lived (barely) for six days while the ruptured appendix and all of its poisonous contents formed a huge abscess in my pelvis. The rupture and subsequent abscess left me infertile. I had to have my irreparable fallopian tubes and a bunch of damaged tissue removed. My body is prone to scarring (adhesions) and the rupture made it much worse. My pelvis is a mess. My ovaries are scarred to my back but are apparently still viable, which is a huge blessing. 

I was officially diagnosed with Ménière's disease last year, which is a degenerative condition of the inner ear. I am already experiencing hearing loss, ringing in the ear, pain, vertigo and balance problems. Falling on someone's table as you walk out of a restaurant is a mix of embarrassment and comedy. I think they think I am drunk. I can't decide if this is more or less embarrassing.  

With all of this, I take about 30 pills a day, sleep and lay down a lot, and almost always have a heating pad or ice pack on me. It is definitely not the life I had envisioned at 16. Really though, isn't that statement true for many of us? My journey was just impacted a bit differently and slipped almost completely out of my control. 

I realized early on that if there was nothing I could do to control my body, I could at least control my attitude and my goals. I have had to give up a lot, but I am at a point now where my only focus is on what I do have, what I am able to do, and how I can positively impact others. 

I am slowly pursuing my degree (I've had to take 3 years of medical leave and can only attend school part time due to my pain and symptoms, so I'm a 7th year sophomore!). I am now almost done with my political science degree and have lots of other filler courses to take. Being an older student has had its perks though, as my professors really admire my work and dedication, which has allowed my a lot of great opportunities (Katie Spencer, political science researcher...say whaaat?! Oh, yes). 

It may sound silly, but I am just so grateful for the days when I can get out of bed. Crazy, right? It's not that it isn't hard. Every day is a battle and having chronic illness so young is a really difficult thing for people to understand and relate to. But I have an amazing close support system of family, friends, and my boyfriend. I know that my health issues are going to be a major part of the rest of my life. Honestly, my heart breaks more for my loved ones than for me. I can't imagine watching someone you love go through this and wanting to stick around willingly. They are truly amazing. 

I am thankful that God has kept me around. I hope to do something meaningful with this life He has given me.