Prednisone - The Choice

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.

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~ 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

Gastric denial

I’ve had a bad feeling about something being not-quite-right in my stomach and to be honest, I was procrastinating making the appointment for quite some time. It’s only now that things had gotten much worse, I couldn’t really manage the acid coming up from my stomach anymore. Pepcid Complete/One a day had worked wonders on me for a long time. The instructions say, do not take more than 2 chewable tablets in 24 hours. I had been able to get by with just one for a long time, but some time ago I had to increase my dose to 2 tablets & much more often.

My dad passed away back in 2006. In his autopsy, they found out he had a massive ulcer in his stomach. The stomach cavity (?) was filled with fluid, more than 10liters – how’s that even possible? Anyway, my dad had been taking massive doses of Burana, Finnish ibuprofen. Nobody ever bothered looking at the warnings in the package. My mom showed me the autopsy report and it indicated that my dad had an ulcer in his stomach (among many other organ problems).  That ulcer had burned through the wall of the stomach. I immediately asked her, if she knew about ibuprofen potential dangers? And I also asked how many pills was he taking everyday? It was a lot and mostly on empty stomach, apparently. I was horrified. The more he took ibuprofen, the worse his pain got. He was a very stubborn man, and to some degree a bit of a scaredy cat. He didn’t want to see a doctor for any of his health problems, because he was afraid of what they will tell him. He was convinced he is seriously ill with cancer of lungs or something, and refused to see a doctor. You’re wondering why I’m sharing this information with you, I’m sure. Well – I realized I was going down the same road as my dad, with denial and fear of knowing what is wrong with me! So I made the appointment with my gastroenterologist & it was yesterday.

During the first appointment my doctor told me “Motrin is what keeps me in business!” He understood that I have to take Motrin for my RA, but he was shocked when I told him I take 3 Motrin’s (600mg of ibuprofen) in the morning. Sometimes for headache, sometimes for other aches and pains, sometimes I don’t take it anymore. I laughed, if you only knew how much I’ve been taking for the past 2 years :D The 3 Motrin’s is nothing , I mean NOTHING, in comparison! As many of you know, I also take Prednisone for rheumatoid arthritis (bad combination together with NSAIDs). So based on my symptoms, he suspected I may have an ulcer in my stomach. So I scheduled an appointment for endoscopy and luckily they had 1 space in their schedule for today.

I arrived at 11:50am, my appointment was at 12. They took me in right away & we went through all the paper work, signatures & questions. I couldn’t be sedated because I’m allergic to eggs, so the doctor put some funky bubbly spray in the back of my throat, to numb it. The nurse & anesthesiologist couldn’t find a vein in my arms. I have deep, slippery veins plus I wasn’t allowed to drink anything in 12 pre procedure, so I was dehydrated. Eventually the anesthesiologist found  vein in the side of my wrist. Cried from pain, 6 trials & deep prodding with a needle. He wasn’t the gentlest either and got me pretty worked up and anxious. Not my idea of fun times, for sure.  After he found my vein, he gave me valium. It was supposed to help me stay relaxed & not feel weird about the camera being put down my throat. After that I got a bit disoriented & might’ve fallen asleep for some seconds, who knows, maybe minutes? I only remember that I started to cough, gag and vomit. The doctor took the equipment out & said he was done anyway, so it was ok. Then I don’t know, I was drifting on and off between being awake and being asleep. After that, the doctor came to talk to me.

He said, I definitely have gastritis (acute and chronic gastritis), but no ulcers! Massive relief! They took a biopsy of my stomach and he will check if there’s also bacteria causing trouble. So while I wait for the final results, I’m taking something called Dexilant. Must be something rather new since my doctor gave me a discount card for it ;) He said it was so good I came to see him now, rather than later. Most people apparently wait until the situation has gotten far worse. So far I feel ok, no side effects, but I’ve only taken one capsule so far. To be continued :)

“In matters of style, swim with the current; in matters of principle, stand like a rock.” -- Thomas Jefferson