Be Brave… That’s what the frame to the left of me says, it’s a daily reminder that it’s what is required of me to push through each day. I’ve come realize that being brave isn’t just for me, but for those around me, as it’s easier to see me with a smile rather than tears that usually plague me at the worst times. What most don’t realize is there is so much more to being brave than pretending that everything is fine, most days I’m not fine, I’m barely keeping it together.
The more research that I’ve found on CNKD (Classical NK Deficiency) leads me to medical journals that show high mortality rates, rare viruses, and failed treatments, not to mention the abundance of malignancies that stem from CNKD. The latest article I came across states there are forty people with CNKD in the world, the article was published in 2014. The majority of those people had died and others have cancer or incurable viruses. That’s terrifying. It’s frightening to know that my future holds something similar to either of those scenarios. Combine my CNKD diagnosis with about 20 other complex medical conditions and it doesn’t make for a great time, yet somehow I still manage to slap a smile on my face.
Another article I found mentioned some little doo-dad about Lymphoproliferative disorders and how they’re most founded in people with compromised immune systems. After reading further I recalled seeing a lab report that showed an abnormally high Lymphocyte count on my last cmp/cbc order. If it’s a true elevation of lymphocytes, it may explain why I constantly have lymph nodes swollen all over my body, as my Platelet count and WBC count are always normal.
I’m sure you’re wondering why I do all of this research, heck I wonder too. The truth is, we wouldn’t have this CNKD diagnosis if I hadn’t researched night and day. We wouldn’t know my current circumstances with CNKD had I not spent countless hours reading and going through everything I could get my hands on. I’m not talking about WedMD and googling my symptoms, I’m talking about numerous medical journals, research studies and so on. WebMD is terrible for complex medical patients, as it gives you 50 reasons you could have a headache, from a slight caffeine withdrawal, to brain cancer… back to being brave.
Being brave isn’t for me, it’s for my mom, for my dad, husband, and family. It’s for my friends, those who I work with, and those I have to encounter while I’m at work. I was brave all day today, but deep down my body was revolting and trying to keep me in bed. Instead, I got up, got dressed and went to Carmel with my mom and Hudson. Hudson and I spent a couple of hours at the beach while my mom was busy, we romped and stomped, and bought some goodies. As soon as I got in the car, the trek that I has just completed hit me hard. For anyone who has been to Carmel knows there is a GIANT sand dune that takes you to the beach. Getting down the dune is easy part, climbing back up it almost kills me. It took a solid 20 minutes for me to climb that sucker, but I did it, with about 3489572 breaks but without inhalers. That was my extent of bravery for the day.
I appreciate hearing how much you guys love reading these little tid-bits, as it makes this whole blogging thing really fun and meaningful. It lets me know that what I’m saying/feeling/going through is making some kind of impact. I love you all and remember, BE BRAVE.