I started on two new meds a few weeks ago and we also started tapering the steroids that I am on. The last time we tried the steroid taper, I ended up back in the hospital because my head pain got pretty bad. On Sunday, I started on the dosage level that we got to the last time and my body is again rebelling - my head pain and fogginess has increased over the past two days. However, since I now know what's causing it (the taper) I am going to ride it out for a few days to see if things settle down - it also helps that I have Rheumo Doc and Pain Management Doc appointments tomorrow, so I can get their weighing in on what's going on with the increased pain.
In general, I definitely have more endurance and stamina than I did a month a half ago. We were able to go to a friend's house for Thanksgiving! And while I wore earplugs the whole time and hid away where conversations were limited to one or two people, we were able to enjoy being out of the house and around dear friends.
Jim's parents came into town the week before Thanksgiving and were a great help in getting things done - like early Christmas baking and decorating and some yard clean - things that we really wanted to do but either I couldn't do on my own or they just weren't high priority given the current situation. Very thankful for them.
The Thanksgiving week was hard for me because we had planned to be in AZ celebrating with my family. Little by little during the week, I gathered small "hurts" to myself - things that I couldn't do because of this pain, this thorn in my side mengintis that just won't go away. And by the day after Thanksgiving (yes, a day in which the whole focus is on what we are thankful for, I get the irony) I had quite the list of things I WASN'T thankful for, things I was being asked to give up and it wasn't fair. It wasn't fair I didn't get to see my side of the family. It wasn't fair that I couldn't go Black Friday shopping with my girlfriends like I normally would (shout out to the hubby who did wake up at 530am and drive me to Home Depot so I could get the $1 poinsettias to decorate the front yard - he's not a morning person so it was very very nice of him), I couldn't do my Christmas baking the way I usually did it, or even watch Christmas movies because the sound the DVD player makes irritates the buzzing noise I already have in my head almost constantly. Not fair. Not fair. Not fair.
Holy temper tantrum Batman. I lost it and used many a kleenex as I cried out my woes and hurts and frustration and DONENESS with pain and suffering. I just didn't want to hurt anymore. Sure take these things away, but leave the pain out of it okay? Why do I have to deal with both?
My sweet husband listened to my cries and offered up two sentences. He said "well, I love you. And that's what I have to give to you, my love." And then he went outside to finish putting up Christmas lights.
I sat there, a bit dumbfounded. And then...yup..you guessed it... BUT GOD.
I realized a couple of things, one being a much needed apology to the husband, and two, I realized that the perfect and simple words that he had stated weren't just from his mouth, but from God. The Lord was reminding me that He loves me and that's what He's offering. His love.
And that thought brings joy to my heart.
I wear my "Choose Joy" hoodie to treatment. I have a plaque on the table nearest my usual sitting spot that says "Today I choose joy". What does it mean to "choose joy?"
There is a cost to choosing joy.
In choosing joy, I am giving up self. I am giving up my plans and choosing the plans that He has for me (Luke 9:24)
Choosing joy is dying to self, allowing His will to take the place of mine. To gratefully follow Him, in His yoke (Philippians 1:21, Matthew 11:30)
Choosing joy is desiring for His glory to be seen in He is doing and will do, not what I want Him to do (Romans 11:34)
Choosing joy is kneeling at His feet, available and teachable for His great work (2 Timothy 3:16-18)
Choosing joy is knowing He's working and moving, for His glory and my good (Romans 8:28)
Choosing joy is thinking of Him first (Deuteronomy 6:5)
Choosing joy is finding myself in Him (John 15:5)
Choosing joy is me decreasing and Him increasing (John 3:30)
Choosing joy is knowing I am a daughter of God, that I belong to Him, and that He loves me (John 3:16)
Choosing joy is trusting Him to be the God He has already proven Himself to be (Isaiah 43)
I keep wanting to be at a certain place on this timeline of lupus and meningitis and pain and hurt and medicines and steroids. And He wants me somewhere different and I keep stamping my foot and huffing and puffing and crossing my arms.
Choosing joy is to sit where it may be uncomfortable and scary and unknown, but trusting and following Him wherever He leads, because His plan is perfect and He will be seen, not me.
"Looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God" (Hebrews 12:2).
The grace and mercy of the Lord to help me wade through these hard thoughts and my own frustration and faltering hope amazes me. I am so thankful that He allows me to seek Him and find Him and find comfort and peace in His word.
Today, I choose joy and pray that He will be seen through all of this.