B Positive

When I said, “I loved change. Change is a good thing,” a couple weeks ago this isn’t exactly what I had in mind. Most teens my age don’t necessarily have this in mind. When I said I wanted a change in my life, I meant a change in view, but the past month, I’ve seen parts of Kansas City most people can’t fathom into words. It goes back to the fact maybe I should have been more direct on what I pursued in requesting such a high demand. The problem I plan to face most in creating my own blog is where I start and end my trail of thought. The human brain works in wonders and I don’t want to keep you lovely people from your own visionary thought expressions due to this, so I’ll apologize in advance.

I should probably start with the reason I’ve become so intent in writing an online journal of me. Hi! I am Hailey Deeds, a 14 year old girl whose brain works faster than my body thinks necessary.  I have lupus and it’s a blessing.

I will answer your question as bluntly as possible up front now, no, I am NOT dying. I just work a bit differently, which is the first thing I want you to understand.

I use the school elevator, that’s okay.

I go to the nurse for extra care, that’s okay too!

I’m still normal with feelings of sadness and happiness. I still have dreams I want to pursue as a future adult of America. (HINT: I want to be a public speaker.) You just have to take the time to ask.

I just ask you the next time you give a stranger a second glance…to be considerate of what you think. You never fully understand what they’re going through until you get an inside sneak peek of their crazed life.

My journey all started on a normal, summer cross country day. I love running. I loved watching my teammate’s ponytails flip side to side as I had more endurance to keep moving forward. I loved being that “still small voice” pushing my friend Lauren to be faster than me. I loved the passion I felt everyday as I saw all the girls red faced from a good run. As I pushed further into the month I saw my injuries weren’t getting at all better as expect. I actually thought it was normal to hurt so much. I’d ice my feet constantly and ask for 5 star mother massages. It got to one point where I’d wake up crying from the pain and the only thought that occurred to me was how my mom was feeling. She was scared even though she never said it to my face. I was too.

The trainer at the school, the day I decided to cave into the swelling, told me it was completely normal and told me to rest that week. I, of course, being the stubborn mule I am, didn’t enjoy that efficient idea. I like to keep moving forward from the past, including physical pain. She gave me two, big ice packs for my knees to hinder the aches!  I was compared to a hockey, volleyball, and/or soccer player as I wobbled over to my fellow teammates for encouragement. (No complaints. I looked tough.)  I felt like a true athlete.

After getting home, my dear dad was home to greet me at the bottom of the stairs and as a “normal” family we decided to go to Costco. The non-normal part was not being able to enjoy my stroll down aisles of delicious foods. I saw life from a wheel chair level. And to topic it all off (like ice cream) I had a constant fever that lasted 22 days. Doctors kept throwing diagnose after diagnose at the problem until it came to the point where I thought we would never know what was truly wrong with me. (Ex: Pneumonia, Mono, Ehrlichiosis) The truth became clear to us when I was told, during a test; bright green dots appeared all over the computer monitor. I have lupus and I am a hospital kid.(Proud of it too!)

This month I've had to deal with the struggle of missing school, watching loved ones cry, drawing blood, and kidney testing. I have thought about starting support groups and informing others of what this disease can cause. It has caused me to think.

When I see people in their fancy, new cars I now come up with scenarios of what they must be going through. We all go through trials, good and bad, and sometimes as selfish human beings we forget that. I do too. I don’t deserve all the attention I’m getting. At the hospital I have seen my fair share of little troopers who have no idea that they are sick. They’re the REAL heroes. The doctors are too, but mostly, the parents. I see the love in their eyes when they look at their little one with tubes of strength keeping them from enjoying the bright sun outside. Or in Missouri's case, the blessed rain. 

I have visited Children's Mercy Hospital four days this week. Three involved me getting IV treatments and the last one was Friday. Lupus is a chronic, autoimmune disease that damages certain body parts. I have inflammation in my knees and kidneys. The test Friday set our baseline for future references/flare-ups. During testing I was asleep and now I just have a small bruise from where all the magic happened. I had visitors, apple juice, biscuits & gravy, and really amazing staff. (I was living the life!) I would recommend the hospital food to anyone.

Darby came & visited today, bringing swirl ice cream (my favorite), and his humorous personality. I am officially back home. 

I can now walk normally, due to the meds. This isn't necessarily the end, but my round one is done. 

 Freshman year has been by far the hardest for both my families. My great grandpa passed away in August, Uncle Darby is still going strong from battling cancer (one of my main reasons to keep going), and we just found out my Grandpa Ace has cancer as a bonus. How my family handles all this news, is the real news to me. People have been SO supportive and the staff at the hospital has tended to all our needs at request. 

Thank you so much for everything. 

This month is a good month for a good month.