Wednesday, February 22, 2017

One Step Forward, Two Steps Back--Praying for Wisdom

Twenty days can bring a whole lot of change, and not all of it good.  In the last twenty days, Anna stopped taking Methotrexate (because of elevated liver enzymes).  She began taking oral Prednisone and Plaquenil. The oral Prednisone was finished after a week (thank the Lord! Anna does not like what Prednisone does to her mind).  In the middle of that medication dose, Anna's foot was feeling so much better, but as she tapered the medication, the arthritis returned.  So her rheumatologist arranged for her to have a cortisone injection into the joint this past Friday.  This was done by the radiology department at the medical center, as the joint is to tiny and the procedure needs to be precise.  Afterward, Anna wished she had her phone or a camera with her.  She was able to watch on the monitor as they completed the procedure.  She thought it fascinating to see them insert the needle into the joint. Within 12 hours, the foot was feeling good!  In the past, I described this as a toe issue, but Anna explained that it wasn't exactly the joint in the middle of the toe---it was the joint that connects the toe to the foot. Anna has grown to greatly appreciate cortisone injections! Last week Anna described walking as painful.  This week she is back to going for runs on campus.

Thirteen days into taking the newly prescribed Plaquenil, Anna sent me pictures of a rash on her cheeks.  She described some other symptoms of side effects which she was experiencing.  She contacted her rheumatologist, who suggested that Anna stop taking Plaquenil for a week to see if those symptoms would go away.  They did.

Today we had an appointment with the retina specialist, with Anna taking no systemic
medications for almost a week and just eye drops for the eyes.  We discovered that Methotrexate had been doing a great job at controlling inflammation in Anna's eyes---even without the Remicade that we had to abruptly stop in early October. We were dismayed to discover that inflammation is back in BOTH eyes (the right eye has been quiet for years), and the macular edema is recurring in the left eye.  So what do we do now?  The retina specialist put in a direct call to the rheumatologist and left a message.  They will confer with each other to come up with a plan to control this inflammation.  (Dr. N---the eye doctor is willing to use ocular injections, although the risk of cataracts increases with the frequency of those).  For the next two weeks, she is adding eye drops.  And she told Anna to call her and even have her staff page her if she is in surgery if Anna has any concerns.

The Hershey Eye Center became a prayer room/area for me today.  As soon as Anna took the visual test, I knew that it would probably not be the best appointment.  I was praying for wisdom from God for Anna's doctors.  That prayer continues.

This journey is getting rather bumpy again---almost a little out-of-control.  But I know that Jesus remains in control.  The joy of the Lord is our strength---keeps us from drowning in worry and sorrow (although I still tend to sigh a lot as I process all of these new developments).  I just sent out some cards to some people today, and the notecards have a verse on them that kept running through my mind today:  "May the God of hope fill you with all joy and peace as you trust in Him."  I'm praying that verse over myself today. Thank you for your prayers for Anna and her doctors.

Sunday, February 05, 2017

A Spoonful of [Hershey's Syrup] Helps the Medicine Go Down . . . .

Lord, I come, I confess
Bowing here I find my rest
Without You I fall apart
You're the One that guides my heart
Lord, I need You, oh, I need You
Every hour I need You
My one defense, my righteousness
Oh God, how I need You . . . 
Jesus, You're my hope and stay*

I'm learning to not be totally devastated when the "game" of controlling arthritis and uveitis totally changes, when most of the cards to help win the game (is there ever a winning of this game?) are taken off the table. Maybe it helps that Anna has now taken control of her medical appointments and medications.  I'm now more of an observer and coach on the sidelines than one of the active players.  Maybe it helps that even when Anna has moments of describing the pain in her toe as a "7" on the scale of 1-10 (with her reminder that she hardly ever registers pain with her arthritis), that's only a momentary exclamation of her reality in the middle of a conversation mostly filled with happiness and excitement about college and some of her classes, about a book she's reading, and some of the professors, and an alternate chapel she's attending. She is doing well with not allowing a chronic disease to control her life or define who she is.
Anna asked me on Thursday (on the way to an appointment with the rheumatologist) if I was okay with NOT coming in the exam room with her.  She's an adult, so what can I say but, "okay"?  She wanted to talk to the doctor herself, and had been researching and thinking about the best way to "articulate" (her word) to the doctor her desire to get a cortisone injection in her right toe, which has been causing her many problems.  (She wants to go running for some exercise, but the toe hurts too much.  I asked if she could go for a swim in the college pool, but she said it still hurts then, because she does need to stand in the pool sometimes---and then there's all the walking around campus for classes and work and meals.)
Anna did give me a rundown of the appointment as soon as she reached the waiting area. The results of that doctor's visit did change the "game" for Anna.  We had been grateful that she could still be on Methotrexate, but now her liver enzymes are elevated, and she can no longer take the Methotrexate.  The rheumatologist wasn't able to give Anna a cortisone injection into the toe---she first wanted xrays taken to be sure of what's going on inside that swollen and painful toe.  And she also said that she can't do an injection into the toe in the office, because the joint is so tiny and an injection would have to be precise.  Anna was given prescriptions for a 7-day dose of the dreaded oral Prednisone.  And for the long term, a 'script' for Plaquenil.  Anna was on Plaquenil probably over 15 years ago, and it wasn't effective for her then.  But Anna did not remember that she had been on it before, and I was not in the room.  So we will give it another go and see what happens.  I did remember that when she took it before, the doctor and pharmacist both warned me that it is a very bitter pill to swallow.  I remember mixing the bitter compound with equal parts of Hershey's syrup in an oral syringe to get it down.  So when we stopped by Target to pick up the medications, I also purchased a bottle of Hershey's syrup for her to keep in her dorm room.
Anna and I both separately have been "drinking in" Scripture.  I started a new devotional plan in the new year and also began a 10-week Bible study, both of which keep me saturated in God's Word.  This has been a blessing.  I was reading last night a verse and a commentary which talked about how the Holy Spirit brings Scriptures to our minds which related to our current circumstances---part of how He works.  I've experienced this especially this past week.  Scriptures flooding through my head and heart (like a shower!) with assurances of God's love for me, and for Anna.  Reminders of the Israelites who wandered in the wilderness and complained and didn't trust Him in spite of the tangible presence of God on their journey (the cloud by day and the fire by night) and the miracles He performed on their behalf.  His reminder to remember His faithfulness in the past and His faithfulness to come ("The steadfast love of the Lord never ceases---He mercies never come to an end.  They are new every morning!  Great is His faithfulness.").  Every day is a gift.  And He continues to lead us in His love and faithfulness.  Jesus IS our hope and stay on this unpredictable journey.  
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