Can we talk about how exhausting this is?

•Lupus

•Leukopenia

•Hypovolemia

•Sjrogens

•Plaquenil toxicity

•Reynaud’s

•Osteopenia

•Malabsorption syndrome

•Anemia/iron deficiency caused by iron intolerance

•Sialoadenitis

I am not my diagnosis and my diagnosis does not define me. After everything I have been through and all the courage I seem to find within myself, I’ve been given more bad news.

My systemic illness is attacking my lymph nodes. On top of my immune system attacking all of my healthy cells and organs, it’s moving on to the things that are supposed to fight against illnesses.

This is the part where it’s totally fitting for the Universe to tell me to go F*** myself now.

But wait.

These circumstances suck. They’re terrible. Awful. Gut wrenching to my core. But I’m also still alive. I have horrible days that make me want to just curl up and refuse the chemo injections. Days that are mine, though. Those are days I’m holding on to.

I want my body to have a positive response to something. I desperately need that. Two days ago I had a reaction to the CT contrast dye that was given through my IV.

“Hey body, can we just calm down?!”

Life hits hard. It really does. Moving forward is all I have left. I pray so hard for guidance as I maneuver through the constant disappointment of each medication not working. I beg and beg to please let just one treatment work. Each time I’m told the medications are not helping I am reminded of my illness and what it does to my body. Rejection with each dose of this medication is ruthless. It tries to eat away at my soul bit by bit but I remind myself that I am a winner and my future has to be better than my past.

Everyone wants to go to heaven, but no one wants to die. That’s true in my eyes. It’s not my time yet. I have big plans for my future. I have even bigger plans for my sons future. I plan to travel the world again once this pandemic settles. I want to hold my grandchild one day and do all the things grandparents do. I want to cheer for my son when he walks the stage at high school and college graduation. I want to hug him and tell him how proud I am of the man he has become on the day of his wedding. I want to hold onto these future memories I plan to make for as long as I can.

Everything I have done in this life has been with a purpose. I know this is true but then there’s days like the last three where I can’t seem to get out of this dark hole. I’ve been here four times since my diagnosis three years ago.

Next stop; RITUXAN INFUSION. At least that’s the plan.

Can I kindly say no thank you and move on?

Maybe.

Or maybe it’s going to finally be my saving Grace. I feel like I’m playing Russian Roulette with my life. I trust the doctors but trust isn’t the issue. The issue is whether or not my body decides to say my time is up.

Although disappointment seems to be all I get with my lab results and response to medications, I’m straightening my hat and pulling myself out of this dark hole.

Something my mother recently gave me states, “WHENEVER YOU FEEL OVERWHELMED… REMEMBER WHOSE DAUGHTER YOU ARE AND STRAIGHTEN YOUR CROWN”.

So this is me… straightening my crown. ♥️

God Bless…

S

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