Living Breathless
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A New Look, A New ME!


Meet me on oxygen. I still do all the things I did before, just slower and with a tube halfway up my nose.

Whew. I don’t know about you, but that last blog entry got a bit to real for me. I’m not all into talking about my feelings or even really talking about myself – especially not on this blog. But I’m going to keep with this personal vein here and there on the blog, even though adventuring is waaaay more interesting than stupid autoimmune diseases.

Notice anything different about this site? I’ve gone through I-don’t-know-how-many redesigns over the years, each time getting further away from my original purpose: To showcase my fine body of work when I was in college and “networking.” (I use the term “fine” loosely here. I look back on all that and cringe now, a lot like how I will reread this in another five years and do the same.) I have tried to move my blog from being about me – because, lets face it, I’m boring – and focus on adventures! Formerly called “Curious Adventurer,” I’ve now dubbed myself the “Breathless Adventurer” complete with a new banner photo and URL. I figure if I’m going to huff and puff my way through adventures, I might as well embrace the hilarity of it all – and you get to follow along at my new home online:

That being said, I am feeling SO MUCH better than I was when that last post was written. I admit, I was wallowing in a bit of self pity and fear. Maybe you’ll say that’s understandable, but I find it unacceptable. It serves no purpose, especially not to help me get to any level of better. My excuse was that January was a bit of a rough month. It started with my primary pulmonologist telling me that my lungs are screwed and he referred me to a more specialized pulmonologist for a second opinion. Then my rheumatologist had a near meltdown at my follow up in the middle of the month when he saw I was still on oxygen and not expected to get any better. He went on a rant about how he refuses to accept that. (I kind of love him for that. He was saying what I should have been all along.) Finally, at the end of the month, the second pulmonologist says that he doesn’t think that I’ll be on oxygen forever, but it may be for a while yet, until my lungs can finish clearing and healing.

So the second pulmonologist made some recommendations to the first pulmonologist and the rheumatologist increased some medications and added others and everyone agrees we are working on getting me off oxygen. However, I think one of the things that has made the biggest difference is my awesome boss letting me work from home.

I know, I sound like a complete suck up right now. But I’ve worked for companies that have fired people while they were on approved medical leave and done all sorts of unethical, terrible things to people while they are battling illnesses for no reason other than they weren’t meeting “business needs.” I have never worked for a company that bent a rule a little bit so someone could work from home a couple of months before they were technically eligible just so they could stay away from germs and try to feel better. Compared to where I was this time two months ago, I feel like a new woman.

I’m still keeping Gus the little oxygen tank close by when I’m walking, shopping, or whatever, but when I’m home working or hanging out or even just crossing the room, I’m not using oxygen. Its WONDERFUL not dragging around 50 feet of tubing just to walk to the bathroom. Big Bertha the concentrator is feeling a little unloved right now, but she’s a big girl. She can take it.

Now, I just need the weather to clear so I can continue my self-designed rehabilitative therapy program in the fresh air. The woods are calling and I must go — oxygen tank and all.

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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