Living Breathless
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Weakness is for wussies

I'm breathing better and getting out a lot more, but I still have a way to go to get my strength back.

I’m breathing better and getting out a lot more, but I still have a way to go before I get my strength back to where I was a couple of years ago.

About two days after my last doctor’s appointment – you know, the one where he told me to stay out of the sun – I went and got my first sunburn of the year. I listen to my doctors about as well as my dog listens to me.

It was an accident, if you could call me intentionally going out at noon on a bright day an accident. The accidental part was that I ended up having a few hours free and decided to take my dog on a short hike to fill the time. We went to Big Bone Lick State Park, where I love to watch my dumb hound bark at the bison there. The path around the bison is in direct sun, and I stood there watching the baby bison a little longer than I planned to. So my face, arms, neck, chest and scalp paid the price. And then my joints paid for it for the following five days.

It probably wasn’t the wisest thing to get a sunburn at the same time I am stepping down from a 20mg dose of Prednisone, but hey! You live and you learn. That achy, crappy feeling went away after a few days, and I stopped laying around. Since then, I’ve been keeping slathered in sunscreen and haven’t had any issues – including on several hiking trips and a trip to the National Mall at Washington, D.C. in the middle of the day.

So now that it at least seems like I’ve found a way to cope with the sun that doesn’t include me dressing in long sleeves all summer, the next step is getting my strength back.

First of all, I wasn’t exactly in the best shape of my life before I got sick, so I wasn’t starting from a great place. Add to that my body’s struggle to get oxygen to all its parts, and me ignoring it for about six months, and I was done for before the winter even started. Right now, my goal is to get back to where I was about 18-24 months ago, before the worst of my symptoms started.

Between laying around atrophying and taking a 20mg dose of steroids for about six months, I added close to 20 pounds this winter and my formerly cherubic face now looks like it should be bouncing up a basketball court. Plus, my muscles just don’t know how to work anymore. Apparently muscle weakness and round-facedness are both side effects of Prednisone.

Pre-busted lungs, I liked to hike. I was working my way up to a multi-day trip, but slowly. The second the weather started getting better and I didn’t have to fight myself to get out of bed every morning, I started hitting some of my favorite trails. That was in March, and back then, keeping my oxygen levels in the safe zone was the hardest thing for me.

Now, I’m noticing more and more that my oxygen levels are staying stronger, and even though I definitely still need the oxygen, I’m relying on it less and less. Maintaining my oxygen levels is a victory all by itself – but I’m fatiguing and cramping up faster than I used to. I guess I just thought that once my lungs started cooperating, it would be just like old times. I didn’t take into account my body needed to rebuild what little strength and endurance it used to have.

For example, last weekend I hiked about four miles at East Fork Lake State Park. For someone who was told in January that at 46 percent function her lungs were as good as they were going to get, that’s a pretty awesome feat, if I do say so myself. However, pre-illness, I hiked six or seven miles at a time at Hocking Hills State Park – in more rugged terrain – before I started feeling so fatigued.

So even though I’m annoyed with the state of my body, I know I’ll get there. I’m going to focus on how crappy I felt last summer when I didn’t get to hike anywhere, and how far I’ve come in the last few months. And in a few more months, when I’m back up to seven miles minimum, we’ll throw a party.

This entry was posted in: Living Breathless


I’m something you don’t see every day: A person under 80 who walks around with oxygen everywhere she goes. I have Sjogren's Syndrome, an autoimmune disorder which, with the help of my stubborn refusal to go to the doctor, caused some pretty deep damage to my lungs. My lack of breath slowed me down for a while, but I'm back to adventuring - just with Gus, my little oxygen tank, in tow. This year's goal is to complete the 52 Hike Challenge and get myself into a healthier state of being. Join me on my quest to become oxygen free!

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