Foreword: I want all of my readers to know why I am starting this in the first place, to know my Story. I sat down to write it four different times over the last couple of months, and the words never seemed to come out right. I was having a conversation about it with my momma, and she said that she would write it from her perspective. No one else has seen it all, been to every doctors appointment, or gotten my late night phone calls. I want be real with you guys, no matter how hard it may be for me. So here it is, my story written by the person who knows me just as well as I know myself.
Several weeks ago, I encouraged my oldest daughter to write her story…to let people know why she is the way she is. I wanted her to be more vulnerable, more open about her health issues; I want her to share her struggle with her friends. She really had a hard time trying to put it in words, so I told her that it would be easy from my perspective…it is not. I have four children, and for many years I thought I had four healthy children. We knew her environmental allergies were as bad as they could be; she received allergy shots for years and she was made fun of a lot for her red eyebrows and red itchy bumpy skin. None of that seemed to be that big of a deal, she got used to staying inside when her dad mowed the yard and she made sure never to sit in the grass. She was a normal, "healthy" VERY itchy kid until about ten years ago; when we realized that Blaine had more health issues than being allergic to every tree, plant, grass and animal.
When Blaine was 14 years old, her stomach began to hurt ALL of the time. She stopped eating everything “unhealthy” on her own and it didn’t help much. I finally demanded some tests, and they found Gallstones. We got many different opinions about whether or not she should have surgery, and they were all different so we decided to wait and see. She kind of stayed the same for the next two years; with good days and bad days and it became her “normal” life. When she was a sophomore in high school everything went from bad to worse. She got an ear infection, and was put on an antibiotic (her first one since she was very young) and she developed a very serious bacterial infection in her colon called Clostridium difficile commonly called C. diff. It took eighteen months get the C. diff under control, and the toll it took on her body and her life was pretty significant. She lost a lot of her hair; she had horrible stomach pain, swelling and significant bowel problems. She had to have a colonoscopy her junior year that somehow damaged the nerves in her legs, although no one would address the connection; her legs never recovered and she could never run the same again. Because of her embarrassing symptoms and severe pain, she had no social life and didn’t have many friends. She had such horrible pain, getting through the day was difficult. She couldn’t go to the bathroom when she needed to because of the high school “rules”, and she didn’t want anyone to know because it was so embarrassing. Blaine did however appear to be normal and was very high functioning. She was a varsity athlete. She played Basketball, ran Cross Country, Track, was on the swim team, kept a 4.0 GPA and won several pageants. It was remarkable from a parent’s perspective to see a child fight potentially deadly bacteria with such strength and determination. She won the C diff battle, but her body never really recovered.
Blaine still continued to live the life she wanted to have; she even won the title of Miss Richmond Area, which was a preliminary to Miss Kentucky in the Miss America system, as a High School Senior. She competed for the title of Miss Kentucky the summer before her freshman year at Georgetown College. Competing for the title of Miss Kentucky was a pretty big deal for an 18 year old, unfortunately it was one of the worst weeks of her life. It was the first time in many years that she couldn’t eat her special food, and her body paid the price. We knew something was terribly wrong by September of her freshman year of college. Blaine stopped having bowel movements, her dorm room wasn’t air conditioned and her environmental allergies were out of control; she developed exercise-induced Anaphylaxis and would itch uncontrollably while exercising and walking to class. She again was faced with eating food that was making her sick from the cafeteria, by the end of October 2010 she was hospitalized with a fever of 105, a lot of very strange symptoms and a completely compacted bowel. Infectious disease doctors were called in to solve the mystery. After several days in the hospital, and no clear answer, she was able to go back to Georgetown and finish her miserable first semester of college (with a 4.0 of course). Blaine made the very difficult decision to come home at Christmas. She took online classes for the next semester and we LIVED in doctor’s offices. I spent day and night researching her symptoms, and I had the idea that she may have food allergies. BINGO!! She was allergic to almost everything she was eating. Milk, Soy, Rice, Wheat, eggs, etc… we were very hopeful that changing her diet would fix everything. We were wrong, but there was some improvement. She was also diagnosed with significant hypothyroid disease that semester. By this time she had also been suffering with her Gallbladder for almost 5 years, and it was time to see more specialists to see if anything had changed. The attacks became very frequent and the pain was almost unbearable. Again, we got a lot of conflicting advice when it came to removing her gallbladder and again we decided to wait. The next couple years are kind of a blur, she moved to Morehead and finished her bachelor’s degree in health promotion, worked as many hours as she could and kept her almost perfect GPA all while battling her pain. Blaine immediately began her Master’s degree and worked full time at a power plant, trained for 20 weeks to run a full 26.2 mile marathon and during her training she had to have her gallbladder removed and still managed to run the race. She also had an emergency appendectomy just a few months later, it seemed like it was never ending pain and suffering for her.
I could list 100 more things that have happened and gone wrong in her body, but what she is left with is the most painful of them all, she developed a very rare complication from having her gallbladder removed called Sphincter of Oddi dysfunction. She had an unsuccessful surgery to correct the problem. Her bile cannot drain properly into her intestines and backs up into her liver causing raised liver enzyme levels, severe pain and attacks. The attacks are so severe she almost passes out from the pain. I have seen her go through many sleepless nights filled with the terror that this brings into her life. She always describes the pain as “it feels like my ribs are getting pulled out of my chest”. This brings us to today. Blaine is almost 24 years old, she has basically been sick for half of her life. We are thankful everyday that her illness is not threatening her life, just her quality of life. I believe that she will figure out how to beat this too! I’ve never encountered anyone so determined to be healthy in my life. She still leads a very active and a healthy lifestyle; she almost has her Masters degree in Health and Wellness and inspires people every day to be healthy. That’s why I want people to know her story, she’s not just some pretty pageant girl who thinks she knows about exercise and eating healthy. This is actually her life and her passion. Health is the one thing she can’t have, no matter how hard she tries. She wants everyone else to have it. I know a lot of us take our health for granted; Blaine will never take one pain free hour for granted. We complain about a bad day; Blaine celebrates a few good hours. I’m proud beyond words of her strength. If you see Blaine out somewhere, and notice a ridiculous amount of bags over her shoulder, it’s because she has to pack a lunchbox with all of her food for the day. She always has at least one backpack filled with her workout clothes, another backpack with her school books and a computer bag. Bag number 5 is her very big purse is filled with water bottles, asthma inhalers, Epi pens, Benadryl, ibuprofen and gum! I’d imagine most people think she is “high maintenance" but in all reality she is just trying to have the best day she can. If you know her, and she has given you a pep talk because you drink Mountain Dew, eat McDonalds or smoke, now you know where her passion comes from. Sometimes people make more sense if you know their “Story”.