I have signed my organ donor card
I have signed my organ donor card.
But really, there should be another checkbox on that card. I should be able to check a box and donate my body - the one that serves as a medical puzzle - to science! Surely no one will want it for organs! I hardly want it now! 😂
The drive into St. John’s was long and exhausting... and I was the passenger!
But it was necessary to reconnect with my Rheumatologist at this stage in disease progression and medication intervention.
Betcha can’t guess the first thing he said this time after checking the swelling in my hands, elbows and jaw. He declared, “You are abnormal!”
You may not have guessed those words, but after hearing the diagnosis, plenty of friends have said I could have saved myself the pain of the drive to St. John’s because they already knew that!
“Unique... You are unique,” he said as he rephrased his statement, “and I just can’t figure you out!” I am blessed that he loves a challenge and hasn’t given up on me yet. In fact, he says he takes me with him to all his medical conferences around the world to see if any colleagues can help. Since I have yet to travel anywhere, I assume he means the case study that is me.
I, also, think he plans it so that there will be new Pharmaceutical Reps in the Office during my appointments, so he can regale them with my history. The doctor says, “Most people get pretty discouraged after the third medicine change. Doctor’s give too much false hope and patients get cynical when those hopes don’t pan out.”
Rightly so. Pain and the looming disease progression tends to make one less and less cheerful. “But,” he says, “We’ve tried everything on Stephanie and she just takes it in stride. Nothing has worked and some have had some dangerous side effects that only she finds for us.”
“Six. This is my sixth medication in this category,” I said as the doctor looks over the list for confirmation.
After hearing about the other meds I have taken and the side effects and seeing the pain and discomfort as I move, the Rep declared, “You sound so positive and so hope-filled.”
“I look at it this way,” I tell him, “and I have since the day I got sick in the first place, if I can’t move again tomorrow, I am going to live so that I have something to remember about today.”
We all have mottos that help us cope with the struggles we meet on the path of life. That’s one of mine. A mantra, of sorts, that pushes us beyond the rise and fall of emotional reactions.
It doesn’t always keep me hopeful and cheerful, but it does help me focus when I am feeling down and depressed. It reminds me of how I want to live my life as an adventure and a memoir, even if I am the only reader. I want to have memories that would entertain me and inspire me.
Things that I would have never accomplished if I didn’t grow and strive and push myself to new limits when my body, and some detractors, kept saying it couldn’t be done.
Instead, with deep faith and an imagination that allows me to “hope in the Lord and soar on wings like eagles”, each pitfall is a temporary setback.
One approaches each new trial, and trail on our spiritual path, with the hope of physical healing and a more pain-free future. Perhaps my new medications will be the miracle that brings me in line with what others in the medical world might consider normal. Perhaps they will bring on complete remission and all the physical freedom that can provide. I certainly hope and pray for that type of healing, but if it doesn’t happen that way. I am ok.
Because I know that healing doesn’t always look like we think it should. We don’t always get the results we expect or demand, but we still keep going with God, with hope, with humour and with humility. The adventure continues and there is purpose in the path.
Sometimes, the miraculous healing happens as our broken spirits are mended and strengthened for the journey. We face each day with God as a new adventure adding another exciting chapter in the unfolding memoir of our own lives.
“If I can’t move tomorrow, at least I have lived today.” What is the mantra that leads you onward and upward as you travel?
Along the way, I have found that normal is highly overrated anyway.
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