Face to face with life & death, present moment & future
This morning was one of the worst mornings since December of 2011. I’ve been tapering Prednisone and I was determined to be off of it soon. I was willing to deal with the pain that I knew would come. I was desperate to lose the weight I’ve gained since I started Prednisone February 2012. I recently went down to 5mg/day and I felt the decline in my condition, day after day, getting worse. It was a feeling of impending doom, like being killed slowly, through torture. First my wrists, fingers, ankles & feet started swelling up, the pain became intense and the swelling brought on instant disability… inability to trust if the joints would support my step, or if I would drop the coffee mug this time. Would my shoes fit today? Will I be able to get up & down the stairs from/to my house? Can I get dressed by myself? I’ve had to loosen up my laces, getting up/down stairs has become a major task & huge source of frustration as I like to move fast and don’t like depending on other people for help… Getting dressed is a struggle, makes me feel like a toddler, who desperately wants to get herself dressed, but lacks the psychological ability to understand where the leg goes & how do I get this foot inside the sock… Now my knees & elbows are affected as well, I feel my neck getting stiffer – if I continue this way I won’t be able to drive the car (can’t turn the wheel or even open the doors) (this morning I needed two hands to turn the key to start the car), turning in bed will become a painful task, sleeping will become a painful chore (I want to sleep, but if it brings on more pain… why would I?), not to mention household chores… I haven’t been able to cook, clean, do laundry or tidy up in the recent week or so… it was just a matter of time I would become bed ridden.
|Love this necklace, planning to buy it... maybe I will, soon.|
So things have gone downhill fast. Back in December 2011 I struggled to find the will to live. I felt I wasn’t able to contribute to my childs life, felt like a burden to everyone around me. Today I was face to face with that same thought. The pain & inability to move devastated me, I was so angry. I cried and verbalized how much I hated Rheumatoid Arthritis. I was (barely) standing in the kitchen, holding a bottle of Prednisone in my hands. Faced with no choice but to have to increase my dose of Prednisone to 10mg a day, in the hopes it will give me back most of my mobility. I took the pills.
The reasons behind my decision are complex, but make perfect sense to me. I wanted to be off of Prednisone so I could lose the weight and find the joy in being my genuine self, physically. I wanted to love myself again, find the real me underneath the fat. In some ways I feel my weight has affected my decisions in a negative way. I also wanted to be in good health in case I would be able to start conceiving another child. As I was holding onto the bottle of Prednisone, tears were rolling down my cheeks, I was also thinking the mother that I want to be for the child that I already have. How desperately I wanted him to get the best of me, physically active me. The woman who is fun, playful, loves to play sports and do everything to make her son happy, in the present moment. I felt if I allow myself to become disabled again, my son would lose a mother. Yes I want another child, but the child that I already have is FAR MORE IMPORTANT than the child I want to have. So those were the thoughts and the choice became obvious, even if painful in an emotional way. In some way I had to let go of my dream of having another child, for now. I have to give my Angel Boy the best of me, even if it means I’ll live a shorter life because of the long term side effects of Prednisone. I am the one who is always “preaching” about quality of life, how it should override everything else in the life of a person with chronic pain and disability. I must take my own advice now.
Hoping & praying for better times to come.
~ I’m also currently on Humira which is not working yet, also supposed to begin Plaquenil next week. Still taking Dexilant for gastritis, Zyrtec for seasonal allergies, Motrin (lots recently, when things go bad, I take 800mg in the morning & depending on what I have to do, more later in the day), beginning Restasis tomorrow for chronic dry eye.~
* Refuse to Sink -photo by "klacustomecreations" from Etsy.com