But here goes….
These big pills life keeps throwing have been tough to swallow. They are nasty, big, painful and they are refusing to go down. To those that know me and have cared, thank you for hearing my heavy heart. Thank you for loving me in the midst of my fear and despair. I’m tired of me. Thank you for hanging in here with me. I love you and every prayer you pray for me. To my friends and family, forgive me for avoiding you. My pain is great both inside and out, and I’m fighting out of this hole. Please know you are much loved. Your acts of kindness may seem small to you but are huge to me. I so appreciate that when you seek me out, it is to share a smile and not ask of me anything. You don’t point out the mountains that stand in my way, reminding me I have to eventually climb them, you don’t ask questions. Because you know me well enough to see it on my face, or by my actions, that I’m not well and that I’m fighting. You understand that I do not want to talk about my illness. I don’t want to be reminded I feel horrible. I know I’m missing out on important friendships and relationships but I’m sick and trying to act anything other than that is too hard for me now.
I’m Dorothy in the Wizard of Oz standing with my little dog Sophie in the long hallway, and the wizard is behind the curtain, I finally get a moment of his precious time, he will see me now. When I pull the curtain back there sits a man with a white lab coat and a name written on it.
The once Great Oz who has all the answers, supposedly knows my case, the important specifics which can’t be ignored, such as Lupus SLE, seizures, acute pancreatitis is actually a doctor who is overworked, too tired, forgetting who I am and what my health problems are. Just another imperfect human being but one who is in control of my health now. I feel alone & worried. I hurriedly explain my new symptoms, worried that Lupus has taken over another part of me. But not wanting to bore the important person (doctor) or use up his very important person time. My heart drops as he looks back at me while shuffling papers, and typing on his laptop he says, “now what are we seeing you for?” I realize, having to get a new doctor after my great internist from the last 18 years has retired, that they don’t make doctors like they use to.
The system is flawed and I’ve just entered into a five minute “this is what you get and here’s a prescription” era. But my responses of, “doctor I can’t take that med,” or “this med gave me bad side effects. Can I stay with the plan and medications my former doctor spent years finding the right combination to help keep lupus and it’s effects on me at bay?” His answer? “Oh give it another try. Let me know” and wooosh he’s gone.
My support team is neither supportive nor a team
How I got here, in this hole, doesn’t matter to me anymore. Unless you have experienced another person’s trials there really is no way to understand the depth of its cruelty.
I’m continuing to fight out of this hole. While I see that only I can do it and for once, I’m not able to help others. I’ve learned that healing and hope don’t walk hand in hand with worry, fretting, and lectures of what Susie needs or should do. That it’s the ACT of holding hands while silently walking is what brings on healing and hope. We weren’t created to be alone.
Understanding being alone is excruciating when it’s not what you want. I took an unwilling ride on this sick cycle carousel. Alone with my head on a pillow, not needing to be the hostess. Not needing to answer questions. The very technology and social media I cringe at and dislike I’ve realized has been and is my only connection to most of you and the only positive, near normal communication I grasp onto, to escape the emotional battery I take weekly.
I’m fighting to get out of this hole. I’ll keep fighting. But lately it’s been tougher than usual. My Faith sustains me. But I can say that at times, I read the scriptures to myself and think, it’s so beautiful and so true! But right now, for me anyway, it’s hard to grasp so I’ll lean on my Faith. That I don’t always have to know the answers. Or the “why’s”. It is what it is and I do know, it WILL make me a stronger person one day. But for right now, I’m tired of me. Tired of being me.