2016 was a crappy year for almost everyone I know. We all have survived a year filled with death, misery and overall sadness. Whether it is the celebrity deaths, black lives lost or election results, we have all made it through, though barely.
This year I tried hard to focus on the good in this world. I told myself at the end of 2015 I was going to look at my life as a glass half full rather than half empty. It was hard. I managed through a lot of struggles and falls BUT I forced myself to remember everything I’ve already overcome and I focused on my resiliency. Like every other year I often leaned on my friends via Facebook or real life family and they got me through.
I am not where I want to be in life, but it could be so much worse. I don’t want to look back at 2016 and think of all the times I went anaphylactic, the bad reactions from meds, the pass outs or the lost social life. I want to look back and say, “Dammit Elle, you are a warrior.” I am. I used to jut roll my eyes when people would tell me I am an inspiration or that I am strong…NOW I see it. I can now look myself in the mirror and say, “holy crap, you’ve been through the ringer BUT you are still here, fighting.”
The mirror is my weakness. The hardest thing for me this year has been the steroid body change. I’ve gained about 30 pounds and while I had been quite underweight I am now, just bone and a bunch of flab. I can’t work out or do anything to fix that…so I have to accept it. I do my physical therapy everyday but I don’t have the strength or stamina to attempt an actual work out. As my mom says, it’s good I have gained weight. It will help me the next time I get deathly ill it can burn that off and make me less skeleton like. She is kinda right, I was SO THIN. I looked sickly. I still look sickly, just in a different way.
Looking in the mirror I see a woman who has aged so much. Some times I am literally startled by the person I see looking back at me. The steroids have changed my face shape, I have a round double chin and my hair is short. I cut off 18” of hair because it is falling out. I used to link my curls to my identity and now that they’re gone, it’s just an odd, ugly feeling. No matter how I feel about the short hair, I had to cut it. I couldn’t style it myself, I am too weak and I get too tired. Now I can wash it and be done with it. No more effort needed. Also, the short hairs are much easier to deal with when they fall out.
Even though I have moments in which I want to break down and cry I don’t. I push myself to think of all the positive things in life. I focus on the things I have done in my life rather than the things I am missing out on. I packed a lot into my life when I could. I was intense. Joshua and I have a love story meant for a movie. We had so much fun…while I love him with every stupid cell in my body, I do sometimes get sad and think he deserves so much more in a wifey. I try and push my body to do some social things, but I end up spending days in recovery. He deserves the Elle that I used to be.
I know my doctors get annoyed with me. I email or call often. The problem is when I get a new symptom of my disease I get scared. I don’t get little issues. Each issue is an emergency. Its obnoxious and I feel so bad each time I email or call…BUT they’re the real hero’s that have kept me alive.
My brain still hurts intensely BUT the side of my face is no longer going numb regularly so that’s major progress. I still have a fever but it stays under 100 during the day. My abdomen is always painful but if I take my meds, I can eat. I have daily bone pain, but my heating pads and blankets help a lot. I get hives and weird rashes but my continuous flow of Benadryl and a bolus pump usually clear them away. I am exhausted and can only stay awake until about 7pm but thankfully I have a partner in life who is understanding and still loves me. I get major swelling in my abdomen and legs if I stand, but my heart makes me sit.
I could focus on all the negative but I refuse. Since getting my PICC line, new chemo and meds 24/7 pumping into me, I have only gone anaphylactic a few times. Yesterday we used fabric softener for the first time in year. I didn’t die. The nurses and physical therapists that come into my home are amazing and I am simply blessed with their amazingness.
So, 2016 sucked but 2017 will not. Even if I spend the year fighting and battling like I did in 2016, I refuse to be negative. I am alive. I am loved. I am safe. That’s all I can ask for. Thank you to everyone who has helped me if even just a moment via txt.