Rise Up

I’ve been working my booty off as of late and finally got out of a three-week rut, where I didn’t do much of anything. Like, my house was a mess, the floors desperately needed to be vacuumed and I couldn’t even fathom washing my hair, because even that was too much work. Depression is real when you’re dying. It sneaks up out of absolutely nowhere and stays as long as you allow it. This time, I allowed it to stick around for twenty-one days. I made it through events, doctor’s appointments, and daily life without much issue, always able to slap on a happy face and pretend that I was okay. I’ve become quite good at that.

With depression comes loneliness. I know I’ve mentioned it before, but there is a specific type of feeling that accompanies that loneliness and as much as I surround myself with people, I know that none can understand what I’m facing. I have an amazing support system, made up of my parents, husband, family and a few close friends, but other than that dozen or so people, no one else really knows what I struggle with daily.  I’ve said it before and I’ll say it again, I can be surrounded by a group of people and still feel like I’m all alone. I’m learning new ways to deal with depression and it probably helps matters that I’m on an anti-depressant at the moment, but it doesn’t make everything rainbows and butterflies. All of my doctors have made it abundantly clear that it is totally normal to experience some type of depression or anxiety with my multiple complex medical conditions and my terminal illness, because at twenty-eight, dying is something you shouldn’t have to keep in the back of your mind.

I have depression and anxiety. It doesn’t make me any less of a human and it’s not something I am ashamed of. It’s simply a part of my story. Here is a short list of the medical complexities I deal with on the daily:

  • Classical Natural Killer Cell Deficiency
  • Primary Immunodeficiency
  • PFAPA (auto immune disease)
  • Raynauds Phenomenon
  • Middle Cerebral Arterial Atresia
  • Right side Missing Communicating Artery
  • Hypokalemia
  • Potassium Channelopathy
  • Calcium Channelopathy
  • Hemiplegia
  • Hemiplegic Migraines
  • Hemisensory Disorder
  • Horner’s Syndrome
  • Runs of Tachycardia
  • Irregular Heart rhythm
  • Anemia
  • etc…

I’m usually a very positive person, like Elle Woods positive. What most don’t see are the times I’m sitting in bed, crying my eyes out because every fiber of my being hurts. Times when I am cradled in my husband’s arms because life just isn’t fair and I won’t ever have enough time. Times when I can’t wear certain clothes because the fabrics make my skin itch and the times my hair hurts. Terminal illness isn’t as glam as the movies make it. It’s pretty damn ugly.

One thought on “Rise Up

  1. I am so sorry this is not fair. Your tragedy is beyond understanding. I have no understanding what you are going through each day each thought. Asking the whys I want you to know I feel so overwhelming to keep you in all my prayers. I am praying for a Maricle, I am praying for God’s will to be full filled in your life. God ways are prefect, it is hard to see how your pain could be allowed and your dying to be allowed. It feels so unfair for you. So I pray God hold her close help her to be so so strong please do not let her pain go in void help others To be drawn unto her so she can feel LOVE and Life in her storm. Surround her with your name to be Glorified in you Jesus. Love is her strength love will get her through all her pain.

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