I Just Got Down to 10

Browse all Photography Clips episodes

A few of you have checked in and asked how I’m doing. So here we go. It’s a long one, but I’ve got a lot on my mind.

I was caught up on work for once, everything was right on schedule, and I’d made it down to 10 mg of prednisone. I was feeling good enough to think I might finally get off the stuff. Then I put my right foot on the floor.

The Ankle Pain Is Back

If you’ve heard this story before, so have I. I had the same pain about six months ago and about six months before that. It starts right at the tip of my right ankle, wraps around it, and when it gets bad enough, goes all the way up my leg. The top of my left foot hurts too, just before the toes. The right ankle is the one that wakes me up at night.

For the past two weeks, I’ve had to crawl around the house in the mornings. I’ve ended up on the couch in the prayer room at church with my foot propped up. When it hurts that much, I get so flustered I can hardly think straight. I’ve tried the Vicodin my doctor prescribed, and I’ve tried Tylenol. I’m on warfarin, so Motrin is off the table. By evening, it usually lets up a little, especially after I put some CBD cream on it.

I’ve taken prednisone on and off for nearly 40 years, and these last two years have been something else. I’ve been hospitalized twice with serious bleeding while dealing with Crohn’s and taking warfarin. The second time, in January, wasn’t as bad as the first, and I still don’t feel like I’ve fully recovered. I’ve been on Entyvio for at least three years and have had more flare-ups in that time than I ever expected. My Crohn’s symptoms are doing better right now. I’m hoping I’m finally headed toward remission, and I’d like to stay there awhile.

Back Up to 40 mg

So when the ankle started up again, I wrote my GI doctor. He said it might be inflammation from Crohn’s. What I’m thinking is that if we get the inflammation in my gut under control, the rest of my body might settle down too. He said he wasn’t sure and hadn’t seen anything quite like this in a patient before. His plan was to go back up to 40 mg of prednisone for about a month, then 30 for about a month, then two weeks at 20 and two more at 10.

I read that and thought, I just got down to 10.

My records show me going from 40 down to 5 and back up again. I know what happens at 40. After a few days, my stomach settles down, the aches ease, and I can walk around and feel like myself again. Then my blood sugar goes through the roof, my vision gets blurry, and my heart starts pounding. I get headaches, muscle aches, the jitters, and an appetite for just about everything in the house that I can’t eat. Add anxious and irritable to that, and I suspect the people around me might be willing to take their chances with the ankle.

I asked my GI doctor what else we could do. I’ve wondered whether the biologic I took before Entyvio played a part in my bladder cancer, so I have my reasons for asking. I’ve also heard from people who get muscle pain coming down on prednisone. Maybe that’s part of it. All I know is that in nearly 40 years of taking it on and off, this particular pain only started showing up in the past year.

Trying to Get Some Answers

My primary care doctor told me to keep an eye on my blood sugar. Believe me, I’ve been keeping an eye on it. I can sit there eating lettuce and watch it go up. I went for a walk and it came down quite a bit. My ankle had a different opinion of the walk. My doctor said to ice it and try to keep it moving, so I’ve been doing both.

He also referred me to a rheumatologist. I figured I’d call, get an appointment, and find out whether they see people with Crohn’s and joint pain. Well, first they need up to three weeks to review my case and decide if they’ll see me. I asked about the cancellation list. You have to be approved for an appointment before you can get on the list for an appointment. What I should’ve said was, “While you’re deciding whether to approve me, can I ask if you’ve treated anybody with Crohn’s and joint pain?” I’d like to know that before I wait three weeks and pay for a visit.

I had both ankles scanned last year during another round of this. They mentioned what might’ve been old fractures, if I remember right. I still came away wondering why my ankles hurt. I’ve had plenty of blood clots over the years, too. The Doppler they did during an earlier bout showed old scarring and no new clot at the time.

One More Thing

Somewhere in the middle of all that, I went to the urologist to line up my yearly cystoscopy. There was a trace of blood in my urine, and I’d been feeling that familiar pain in my side that makes me wonder about a kidney stone. He wants a CT scan first to get a better look at my bladder and kidneys. So there’s that, too.

How Mom Is Doing

And for those who’ve asked about Mom, she’s been home with us for two weeks and is doing quite well. She’s gained several pounds and is more active. I’m thankful for that. I want to be able to help take care of her, and lately I’ve had mornings when I’m still figuring out how to get across the room myself.

What I’m Praying For

I believe God is sovereign over all of this, and because I belong to Christ, I can trust Him as my Father. When the pain wakes me up, my first prayer is usually, “Lord, please give me some relief.” Sometimes it’s hard to relax, take a deep breath, or get my thoughts together enough to remember what I just prayed. When I can settle down a little, I try to bring my mind back to God’s Word and His promises.

Paul asked the Lord three times to take away his thorn. Christ told him, “My grace is sufficient for you, for my power is made perfect in weakness” (2 Corinthians 12:8–9). On those mornings, I think about that. I still want the pain to go away. I’m learning to ask the Lord to help me trust Him while I go through it. James says the testing of our faith produces steadfastness (James 1:2–4).