Friday, April 15, 2011


Yes, frustrated.

Which means I probably should not be blogging right now. I’ve been in a flare, on a higher than usual dose of prednisone and then had a kenelog shot on Wednesday. To say that I am not myself would be an understatement.

I’ve been slowing diving into a rheumatoid arthritis flare for about 6 weeks now—the first I’ve had in about a year, the worst I’ve had in about 3 years, though I haven’t felt really well for most of this past year (shingles for 5 months anyone?). First it was my jaw, and really almost unbearable pain. And several really strange/awful dentist-tmj appointments. My chiropractor has helped more than anyone. My rheumy’s office lost my call and didn’t return it. Now all agree it is probably RA.

Then about 25 changes in our Oklahoma weather—cold front, warm front. Cold front, warm front. I felt every one of them. Most of them kept me awake at night, swelled my fingers and toes, made me cry out at odd times. Several days all my fingers looked like they’d been bee stung--they were so fat and swollen. Why are the southern fronts the worst? My other RA friends and my dear Mother-in-law with fibro say the same thing. I feel like my joints are being played like a xylophone—ping, ping-ping, BONG—as the pressure changes inside a finger, an ankle, a toe. Musical joints.

Then the big one—complete exhaustion. Pain from jaw to feet and so stiff. My husband took one look at me and told me how much it looked like I was hurting. I pushed on with our weekend plans (5 teenage boys and other houseguests, church, a special event for my husband’s work), which only made things worse.  I took more oral prednisone, which allowed me to keep going but didn’t end the flare.

So I gave in and went for a kenelog shot. I am a bit better—still very tired, but mostly what the shot has done is make me cry at the drop of a hat. Fun times for all at my house.

I have been so tired this year. I will probably miss an event that I really want to attend tomorrow—one of those once-in-a-lifetime things. I yelled at my kids yesterday. My house is a mess.

Do I need to change medicines? My rheumy wants me to choose my next biologic (I’ve used Enbrel, Remicade and have been on Orencia for nearly 3 years). We’ve discussed it, but I’ve refused to make a change yet. There was new damage to my shoulders on my last x-rays, but she will not voice a definite opinion. So it is up to me. I’m working on a spreadsheet with info about my choices, but really, right now, I just want to be told what to do. I don’t have the experience or knowledge to know what to choose. And her refusal to choose tells me that she is not sure a change will help either.

I want more of my life back—my body does not seem to respond well to overdoing, but what it thinks is overdoing and what I think are overdoing do not meet. I want to work again (I am doing a bit of part-time right now but not keeping up well with that). I want to volunteer and teach Bible classes and be the fun mom again. Even just a 50% improvement would make such a huge difference.

I’ve been reading from “Jesus Calling, Devotions for Everyday” to my daughter at night before she goes to sleep. It has been good for both of us. The theme, lately, seems to be trust. Here is March 30:

“I am taking care of you. Trust me at all times. Trust me in all circumstances. Trust me with all your heart. When you are weary and everything seems to be going wrong, you can still utter these four words: ‘I trust You, Jesus.’ By doing so, you release matters into My control, and you fall back into the security of My everlasting arms.”

I am trusting in the long-term plan. The kenelog shot is not helping that, though, today. Tomorrow has to be a better day.


  1. praying for you, mommy! love you so!

  2. That is a really encouraging passage you shared on trust. Sometimes that seems easier said than done.

    I hope that you're feeling a bit better now, and that the steroids did kick in. Sending gentle hugs your way.

  3. Hi there...I'm new to your blog. I feel your pain as a fellow RA sufferer. Have you tried diet? I have gone off all of meds and am doing very well (when I stick to it!) I was on prednisone, Humira, Plaquenil, Naproxyn. I've been off them since Aug 2010. My blog is Take care!!!!

  4. Hang in there! I'm so sorry for the flare up. I always turn to my blog at times of frustration when nobody else understands. YOU ARE NOT ALONE! You are in my thoughts and prayers!

  5. Jen--yes, I eat gluten-free, mostly organic, etc. Diet is a huge help for me, but not a cure.

    Rheumom--Yes, I think I go to my blog when I know there is just no one else to hear what I need to say! But I am never alone--and know that. Thanks for your comment.