“I just don’t know how much pain I’m expected to endure,” I confided to my friend.
And so, I had to admit to myself that I’ve been living with more pain, more morning stiffness, more burning sensations in my joints waking me up at night than I was willing to tolerate.
Because the pain is scary. It makes me think of my X-rays when I first got diagnosed, showing the pain that I had ignored had turned into bone erosions – permanent damage.
And because the pain is exhausting. Emotionally and physically exhausting. Invading my thoughts throughout the day. Throbbing right wrist, stiff left pinky, swollen left ankle, burning right elbow — Oh, was I supposed to be paying attention in this meeting? Invading my sleep at night. Invading my optimism that I had this disease under control.
And then I had to admit it to my rheumatologist. And then I heard him asking if I wanted to get on Prednisone. No. Methotrexate? I’d rather not….. I like a drink. I like to know if I get pregnant I won’t have to abort the child. I like not feeling nauseous one day a week and shedding copious amounts of hair. What else is there?
So now, Plaquenil. A malaria medication, which is a DMARD used to treat lupus and rheumatoid disease (though the printed information the pharmacist gave me states “they don’t know why it works to treat these diseases” — encouraging, right?).
Following the appointment came a struggle. Reading the side effects, wondering if more drugs were the right course, determining to also try lifestyle and diet changes.
Wondering if this was somehow because of something I could have prevented. Something I did. Eating the wrong thing? Stressing about my breakup and work too much? What if I could meditate and eat more kale? And cut out nightshade vegetables and gluten and dairy and sugar and caffeine and never drink again and basically become a monk? Would this disease leave me alone then?
And then depression. And acceptance. And sadness.
Because I’m back here again. Wondering if this treatment will work. Remembering that this disease is labeled chronic and I’m probably stuck with it for the rest of my life. Trying to remember how to feel optimistic and hopeful.
And two pills a day. And one shot a week. And less gluten, dairy, sugar, nightshade veggies, caffeine and alcohol. And more acupuncture.
And maybe starting to feel better. Maybe remembering how to have hope.
Love to all of you dealing with the taxing ups and downs of autoimmune diseases. I would not wish this on anyone, but it does force you to slow down, to be aware of your body, to appreciate the moments that are pain free and the moments where you surprise yourself with what you can do and what you can bear.
If anyone has experience with Plaquenil – good or bad, I’d love to hear it!
#1 by Carla Kienast on May 31, 2017 - 1:55 pm
I am so sorry you’ve had to change treatments. Been there, done that, don’t like it. I have not been on Plaquenil but you do need to see an opthomologist for a baseline eye exam and regular follow up. Sending you hugs and hopes this brings you answers and relief!
#2 by My RAD Life on June 1, 2017 - 2:47 am
Thanks Carla. Man, it’s exhausting. I’ll have to ask my rheumatologist about the ophthalmologist. He mentioned it in passing, but it didn’t sound like something I had to do right away — just two look out for weird eye issues. Goody, always new, fun side effects!
#3 by Monica@theRiteofAging on May 31, 2017 - 9:24 pm
Changing treatments is the worst! I hope you have good luck with Plaquenil…My mom used to be on it for her lupus and my dad said she really disliked it. Unfortunately, I can’t get any more information than that.
Even though I do not like prednisone or MTX they have been so successful in managing my condition. I found I can drink except for the two days following my injection and I am “willing” to deal with the side-effects of prednisone because it “works so well”. (Can you tell the jury is still out on that one?)
#4 by My RAD Life on June 1, 2017 - 2:50 am
Thanks! I just had such a guilt complex about drinking on MTX even though I did it…, but yeah, the combo of that and Enbrel did work pretty well. We’ll see on the Plaquenil….
I definitely understand your feelings on Prednisone!