Tag Archives: Addison’s Disease

F.L.T. and Me

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I was excited when we moved from Bloomfield to Bath, back at the end of 1995, because we’d be living close to the Finger Lakes Trail. And in the spring, guided by my official Steuben County road map, I started thoroughly enjoying it. It must have been a year or two later that I pulled a membership brochure from the registration box east of Aulls Road on M13, figuring that if I was going to keep walking on the trail, I ought to pay something to help with the upkeep.

And on I went, cheerfully hiking, until late October 2005, when I started to feel – off. And on November 1 I crashed. Losing weight. Dropping blood pressure. No interest in food. Constantly falling asleep. Losing muscular strength. Forgetting things. And feeling cold – horribly, horribly cold. I’d lie in a warm bath as long as I could manage, but would soon be shivering again. Our cat was my best friend, pressed up against me as I lay covered up in bed wearing multiple layers of clothing.

Not much hiking in the spring of ’06, though I just managed to lead a hike uphill along the Mitchellsville Gorge. As we approached the County Route 13 my vision suddenly became like a photo negative for about sixty seconds, and that was the last hike. By June I had lost almost 60 pounds, and I couldn’t sit up without a chair back to support me. I figured that I had less than a month to live, and most of my family and friends figured the same. At just about the last possible moment doctors pulled the right diagnosis out of a hat. Addison’s Disease – a vanishingly rare wasting condition, incurable but easy to treat, with steroids twice a day to replace those that my body no longer generates. I started taking them on a Saturday, and on Tuesday noticed just a little spring in just a few steps. One August day I had an explosion of strength and energy, climbing steep trails all over Mossy Bank Park.

But that was it. Just one day. I ate again, I regained weight, I stayed awake, I no longer suffered that Dante-esque cold – but I was still worn down, and beaten down. In February ’07 our elder son Josh dragged me out to Penn Yan and Keuka Outlet Trail, and we managed a few hundred yards each way, despite a cold wind and about three inches of snow. After we finished I was shaking at Dunkin’ Donuts – not from cold, but from depletion.

We went back a week later, and we even got an early spring that year, with snakes and frogs and turtles and all. I’d walked the entire route (a rail trail) before, and with Josh’s help determined to do it again, and by summer I had! (Twice, in fact, walking out and back in segments.)

I returned to the FLT, and at some point I completed walking the Main Trail from one side of Steuben County to the other. (Twice) Then I decided that I would work very deliberately on my recovery by completing Bristol Hills Trail. I had done much of B3, so piece by piece I finished it below Bean Station Road, then went on toward B2. The BHT has a lot of ups and a lot of downs, and some are steep and some are long, so it was a struggle for a guy doing this in order to recover his strength. And in early July of 2010 I walked from the north and west into a little shop in Naples and celebrated with a sandwich for finishing the BHT. Once I’d hiked back to my car I gave myself a round of applause for having end-to-ended it twice.

It took me a couple of years to get the new Crystal Hills Trail done (twice), and a couple of weeks later I started on the wonderful Interlaken Trail, just finishing (twice) before winter weather set in.

Being alone in the woods and the fields gives my PTSD soul a world of good. But now… literally… where do I go from here?

Though my Addison’s is under control, I still only get a few hours of output each day, and that’s EVERYTHING – hiking, driving, paying bills, writing articles, washing dishes – whatever. So driving an hour, hiking for two hours, and then driving back, withdraws four hours from the bank for that day, which is pretty close to the limit.

Soooo… I re-hike trails, of course. I’ll surely do the Interlaken again, and probably the Crystal Hills. I’ve just replaced my maps, so I’ve already started doing re-routes. There’s much of the Greenway Trail I haven’t done, and trails in Keuka Lake State Park. I’m doing the Outlet Trail again this year (and I’m almost done!).

It’s a blessing that my wife and our sons are incredible supporters, and are willing to live with my limitations. I owe the world to them, and to Josh in particular for dragging me out that day… and to my doctors… and to the Outlet Trail… and to the Bristol Hills Trail. And to the Finger Lakes Trail, a footpath across New York [the parts I can easily reach, anyway], forever.

Ten Extra Years of Life

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Ten years ago this day… on November 1, 2005… my adrenal system crashed. By June, when my problem was finally diagnosed and treated, I had lost sixty pounds, I couldn’t stay awake, I couldn’t get warm, and I couldn’t even sit up without support.

Addison’s Disease, which turns out to be the problem, is so vanishingly rare that most doctors never see a case in their entire careers, but Dr. Werner Brammer and Dr. Randy Weidner, along with their colleagues, figured it out at what was becoming the last minute… I doubt I’d have lived another month. It’s incurable, but treatment turns out to be simple: steroids twice a day, and sometimes more often. I started taking them on a Saturday, and on Tuesday suddenly discovered that I had some spring in my step.

So the last ten years have been a gift, and I tried to evaluate whether those years have done anybody any good besides me – had I made anything of those years, that made it worthwhile having me in the world?

Way above anything else I might have accomplished is the fact that I was able to help my wife through her own series of crushing health problems… broken elbow, two broken ankles, two cataract surgeries, melanoma surgery, a heart attack, repeated heart episodes, two ablations and three cardioversions. I’m beyond grateful that I could be here to help her through it all.

I was able to step in and start managing my father’s affairs, once he could no longer do so. In time we had to lay him to rest, but at least he was spared having to do the same for me.

Both our sons got college degrees during this decade. I got to celebrate that, and even help them a little along the way.

I’ve written and published four books, plus hundreds of smaller pieces, and given dozens of public presentations. While I don’t delude myself that these are earth-shaking, I think that they all help build up community. I’ve also published a few editorials on much more serious topics.

I’ve preached hundreds of sermons, and in doing so I’ve tried to encourage people to face their own needs openly, rather than pretending (to themselves or to others) that everything’s fine. In my case this includes sharing about my Post-Traumatic Stress Disorder, which turns out to be a related condition to Addison’s.

I’ve taught hundreds of students at the Dansville campus of Genesee Community College. In particular I’ve taught many of them about our Constitution, and about Islam. In both cases there’s too much ignorance in our country, and too many lies being told. And I’ve cast ballots I’d have otherwise missed, trying to vote for reconciliation and rationality, rather than for fear, division, and dishonesty.

I’ve served on the board of Steuben County Conference and Visitors Bureau, helping bring business (almost none of which profits me) to our area. And I’ve been able to help the Steuben County Historical Society stay strong. And I’ve contributed a lot of information to the Grand Comics Database.

So, OK, I give myself a pass. I’ve contributed something to make the time worthwhile. But I want very much to celebrate those who’ve helped me through.

*Werner Brammer and Randy Weidner, who got me diagnosed and treated.

*My wife, who’s been with me every step of the way, and accepts my limitations, and watches me like a hawk.

*Our son Erik, who does the same.

*Our son Josh, who helped look after me for much of that first year, and who helped me out with long auto trips that I couldn’t have managed on my own. Once I was on the road to recovery Josh also got me out hiking again – in the middle of winter, no less! But it’s made all the difference in the world.

*The great people who maintain our hiking trails. Within a month of starting treatment I was doing the Mossy Bank Park trails non-stop. Josh got me going to re-hike the Keuka Outlet Trail, which was kind of my milestone. After that I started in on branches of the Finger Lakes Trail system. I completed the Bristol Hills Trail, did the entire Crystal Hills Trail and the entire Interloken Trail, and now I’m halfway through the Letchworth Trail.

*My students and colleagues at Genesee Community College, who exercised great care for me as they watched me rapidly decline.

*Our friends at Pleasant Valley Mennonite Church, who suffered along with us and helped us at every step.

*All my comrades at the AddisonsDisease.net listserve. It’s such a rare disease that there aren’t the usual support groups; my wife suggested I look on line, and there I found a community from across the globe.

*Those who pushed through the Affordable Health Care Act, finally making it possible for me to get health insurance. I imagine this will disgruntle a lot of people, but as a guy with a chronic fatal pre-existing condition… which prevents him from working full-time… I’m glad I’ve got it.

*My cousin Heather King in Los Angeles, with her encouragement and her writings.

*Our cat Gabriel, who I’m grieved to say his since passed away. He was my friend when everyone else was off to work and I lay exhausted in bed, shivering even though piled high with blankets and wondering if I’d live through the afternoon. Gabe would press up against me and keep me company, and just a little warm.

Next to my bed I keep an empty Ovaltine jar. That was about all I could make myself eat or drink in those ghastly days, and I keep it to remind me how special THIS day is. And the next one. And, God willing, the next. And I hope to make them worthwhile for someone in addition to me.