2019 has been my worst year of riding. Ever.

2019 has not been good to me.  Not on the bike anyway. And I have sarcoidosis to thank.

If you’ve been following my series of posts about riding with sarcoidosis, you may know that this autoimmune disease and the drugs used to keep it at bay have made riding my bike rather humbling this calendar year.

But now it’s worse.

I’ve been blaming the prednisone, but it feels as if Cytoxan, the chemo drug I’m also now receiving via IV every three weeks is just as bad, if not worse.

I’m raising money to help beat this disease by riding in the virginia’s Blue Ridge Gran Fondo. Click this link to donate or learn more. https://www.pledgereg.com/3221/johncarlin

Under, doctor’s orders, I’ve been reducing the prednisone dose every time I receive a new chemo treatment.  This seemed like a Godsend since the steroids raise hell with your body and your mind.

I was looking forward to riding better once the dosage was reduced.  I’m down to 20 mg of prednisone daily – from the 80 mg I was taking initially.  Although it’s a steroid, prednisone makes you weaker instead of stronger.

My riding results would suggest that’s true.  The longer the summer goes on, the slower I go.

So, it’s either the long-term exposure to prednisone or the problem is Cytoxan.

Since the chemo treatments began, I’ve noticed difficulty for the first few days after the IV. 

Gradually, my strength would return and toward the end of a treatment cycle, I would feel more normal.

Then this cycle arrived, and I felt worse.

Like, I can’t do this, worse.

Crap.

Want to know more about sarcoidosis? Click here.

My regular bike loop serves notice.

I’ve never had to walk my bike up these hills.  Sarcoidosis changes everything.

Last weekend I attempted my regular, 14-mile loop from home.  It has a bit of climbing (1264 feet) and nice scenery. According to my log, I hadn’t ridden the loop since March 17, four months prior.

I missed it. 

I had been riding the local greenway during the evening and feeling pretty good about it. My average speed and perceived effort had been going in the right direction.

So,  after adding a shiny new Thomson seat post to complete the look on my Waterford 3.0 on a Saturday afternoon, I was feeling frisky, and rode off into the hills.

And I couldn’t breathe.

Climbs I once attacked, seemed impossible. On one hill, (Roselawn for local readers) I pulled into 3 different driveways and dismounted so I could catch my breath.  Each time, my Apple Watch said that my heart rate was hovering around 90-percent.

A bit further down the road I was relieved to see an old friend walking his dog at the base of another hill.  I had an excuse to stop and talk (and catch my breath).

It’s not like I would have made the hill anyway.

Time to push the bike. 🙁

On this loop most of the harder climbing was still to come as I made my way (up Dawnwood) toward the Blue Ridge Parkway. 

Here the process repeated itself, and for the first time in my adult life, I pushed the bike to the top of a hill.

This was a serious setback.

I called my wife, Mary to let her know I was doing ok if a bit slow.  With the worst part behind me, I reasoned, the ride would soon be over and even if it wasn’t what I wanted, it was still a ride.

The next few miles of the Parkway were mostly downhill, but even the slightest incline was difficult. 

I called Mary again and told her to come and get me.

She picked me up just two miles from home.

Ride fail.

Even the Greenway…

A couple of days later Mary and I returned to the nice, flat Greenway.  It had been my friend all summer. No difficulty.  No expectations. Just pedal.

But still there was this lingering something.

The week before, Strava says I had averaged 13.5 mph.  That night it was 11.1.  I was trying as hard as I could.

And Mary was pulling.

A couple of nights later, I went out just to get 10 miles so I could say I rode 100 miles for the month.

Even that was hard.  I averaged 11.7 mph and was happy to be done.

Rail-Trail Proof of a Problem.

A week later we took the gravel bikes to ride the Virginia Blue Ridge Railway Trail.  It’s short by rail-trail standards – 7 miles out and 7 back.

After the previous few rides, I was worried that I wouldn’t complete it.

Like most trails that were once railroad beds, there’s no more than a 3-percent change in grade.  

Trains don’t go up or downhill very well.

Turns out, neither do I. 

The scenery is beautiful here.  We pedaled along the Piney River, saw some wildlife and a few other riders. 

The discouraging part is that my breathing told me when the trail was tipping up long before my Garmin confirmed it.

I can’t recall ever even noticing a three percent grade.

Now I was shifting to an easier gear and feeling embarrassed that Mary had to wait for me.

Thanks, sarcoidosis.

For the record, we averaged 9 mph on this ride.

After the way things have been going, I was proud of it.

Follow me on Strava

I know this paints a pitiful picture.  I don’t want this to be a tale of woe as much as a documentation of truth.

When I Google around looking for information about how other cyclists are affected by these drugs, sarcoidosis or other auto-immune diseases, I don’t find a lot. 

It doesn’t need to be cycling.  It could be running, walking … I don’t know – gymnastics. Whatever it is you once did easily that you can’t do anymore because you are dealing with prednisone, Cytoxan or both.

Alas, all is not lost.

A week after my difficult ride on the Greenway, Mary and I took our grandson Luke out for his first excursion in his bike trailer. Granted it was only a couple of miles, but he loved it and so did we. Neither the drugs nor the extra weight made any difference.

In this round: John 1. Sarcoidosis 0.

I need to keep reminding myself that in the words of a well known cyclist, “It’s not about the bike.”

I’ll keep you posted.

I’ve been chronicling my battle with sarcoidosis in a series of posts on this website. To read the entire series, click here.