Today was one of those days that I showed my grumpiness, the dark side of being an ill person. I woke up this morning with my ankle hurting badly and only have 3 prednisone tablets left and not sure when the pharmacy will be shipping out my next prescription. I will tell you I was irritated. What even threw me further into this irritation loop was the fact when I called the pharmacy I found out the Rhemy doctor didn’t write the prescription correctly so I had to make phone calls. Actually, I had my caregiver make the phone calls because I know I would become one of those dreaded patients that yells at the doctor for infractions. I like my doctor, he is a good guy, but pain brings out the beast in me. I promptly shared with my friends and family I am a bear today due to pain issues. I have learned to communicate with everyone so that my inner circle will know that this person who is ripping off their heads does love them, I am just not feeling up to par. I am blessed that I have understanding and empathetic people in my life.

Communication, real communication is key, in my opinion, in having a relationship. The communication I am talking about is not the kind you find on social networks, which has no filter, but those found where I am letting others know how I am doing, what I need, and not just assuming they know. Too often we expect others to read our minds and our bodies, but that is such a fantasy, because truthfully how do others know if I don’t tell them? I have learned this on my journey. If I am in pain, my irritation radar is more sensitive than normal how does someone know that if I don’t tell them? If I need help how do they know if I don’t tell them that too? Fear and shame I believe plays a pivotal role to why we don’t honestly tell people in our lives or community about things. I know it is true for me. I feel ashamed of the body that I have that keeps falling apart or needing surgeries or have these hideous scars or even the fact that I need a trach just because if I have surgery I am allergic to the anesthesia and I will have larnyspasms and this prevents them.

I know I have been chastised for showing pictures of my scars, surgical sites, and being too open about the things my body is doing. The reason I do this has nothing to do with the people in my life, more to do with the fact it helps me not be ashamed of who I am and what I have or will go through in order for me to be at my optimal best. I have to do things that make people cringe and think to themselves why doesn’t she just give up or why is she doing all of this? I do all of this because I know I am valuable. God created me valuable and to be the amazing lady that I am. Yes, I have to go through a ton of surgeries, take chemo drugs to keep my breathing and going, and all the other medications, and yes, I have flare ups that bring me to the brink of tears, and yes, I spend a lot of time alone just because I don’t want to cause angst to those I love, and yes, at times I don’t share my real hopes and dreams with others or myself, but that doesn’t mean I don’t have hopes and dreams. I have a smile most of the time, but that doesn’t mean I don’t have tears or the frustrations it just means I make the choice to communication, share, and keep on going. Communicating and fighting on is the cornerstone to my illness. God is my foundation. I know that I would not be where I am today without God’s healing hand. I learn to trust, bear, and sometimes I do want to throw in the towel and say screw this, but I don’t. Because first of all, if I say screw this and give up then where will that put me? I would be bitter. I wouldn’t have met the wonderful individuals I have on this journey of mine. I wouldn’t know my value or the love and support of those in my life.

Yes, I am an ill woman. I fight on. But I also have my dreams and my hopes and the small things that bring me absolute joy. And I get all those things just because I communicate and I share my struggles as well as my triumphs.