What does remission look like?

Almost as quietly as Sjӧgren’s Syndrome caused my immune system to creep up, nearly turning my life upside down, I slipped into remission. More importantly – I’ve stayed there for one year. I didn’t even realize when, exactly, I went into remission until last month when Dr. B said, “It’s been a year!” (Cue balloon drop.)

So what does that mean? It means that if my immune system stays beat down for another 12 months, I get to start a painstakingly slow drug taper. Maybe, in another five years or so, if all goes well, I can be medicine free! In the meantime, it means I live.

The last couple of years have felt like war. I was diagnosed in 2014, and I was at rock bottom. In 2015, I was out to prove that my life wasn’t over and I pushed and scraped and fought for every breath for every step I took. Last year, I settled in a bit. When my body stopped trying to kill me, I stopped trying to kill it. We learned to work together again. It wasn’t an easy lesson. I’m stubborn, after all. But after a particularly humid hike, in which I ran out of oxygen, literally brought me to my knees, I realized the only way forward was to accept the things I cannot change.

So, you’ll notice that there aren’t as many posts about hiking anymore. That’s not just because I took a sabbatical over the fall and winter. It is because when it’s hot and humid or too cold, I don’t go – or I just go a short distance. I adopted other, lower impact, outdoor activities. No joke, I garden. It started off with just some flowers on my back patio last year. No matter how hot or humid it was, I could always take care of my little container garden and enjoy bursts of color all around me.  This year, I might have gotten carried away.

Keep in mind, I rent. It’s a relatively private townhouse, but I can’t exactly go tear up the grass or anything. Meticulously arranged between my shared front porch and private back patio, I’m growing strawberries, tomatoes, cherry tomatoes, corn (heck, yes! I found corn you can grow in a pot!), and six or seven different varieties of flowers.

What? I don’t believe in doing anything in half measures. It’s going to be beautiful – and tasty.

More importantly, my life is kicking back into gear again. I’ve held myself in limbo for the last couple of years, putting career and educational aspirations on hold while I figured out what I am still capable of. I’m moving past letting an autoimmune disorder (and subsequent lung disease) define everything I do. This is what remission looks like.

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Happy 2nd Anniversary!

Well, hello there! I’ve been gone for a while, but I’m back now and ready to get hiking again! It’s been, what? Six months now?  I quit right after I was supposed to really start making a dent in that 52 Hike Challenge I started at the beginning of the year. But that wasn’t entirely me just letting other projects/life events get in the way. It was mostly Mother Nature and my lungs ganging up on me for basically the entire summer.  But guess what? It has been 113 days since I needed to use Gus!

My relationship with my oxygen has been like a bad romance. We get along great for a while, then he cramps my style. Then I remember I need him, but I don’t want him anymore. Until this summer, I couldn’t live with him, but I couldn’t live without him. Then one day, after a particularly difficult stroll in the park, I realized I can, in fact, survive without him. (Keep reading … you’ll get the full story.)

I really didn’t have much to talk about this summer. Thanks to humidity so high you walk outside and drown, I got benched for a while. What’s that you say? I never let weather or it effect on me stop me before? You’re exactly right! I hadn’t – until a sunny day in June. Let me tell you a story about the day I finally said, “Uncle.”

When I last blogged, I was still on my springtime high – super excited that it was finally warming up and things were turning green again. Last summer, my hiking season stayed strong until mid-August, and I never thought that this year wouldn’t be the same. Well, dear Mother Nature forgot to take her Midol for about three months and hit us with the kind of heat and humidity the weatherman says people with breathing problems should avoid.

Did I listen to him? Psh, naw. Why would I do that? I like to learn things the hard way.

I tried to power through. Yeah, sure, I can still play outside when the heat index is over 100 degrees, but my lungs aren’t going with me. In a classic Cassie move, I thought I could handle a 7-mile walk around a park. I mean, it’s one of those multi-use paved trails. Easy, right? Ha. Hahaha. Hahahahahahahaha!

The trail runs between stands of trees, but it isn’t actually shaded. We were walking on blacktop with the sun bearing down on us. It was fun for about the first mile. After that, the plodding started. I refused to give up, dug in and turned my oxygen up. And I started getting really cranky. I’m used to people staring at me. I know I look like a weirdzilla with tubing wrapped around my face. Usually, I just smile and keep on walking. But on this day I had zero patience for adults who should have better manners. So I started snarking at people when they’d stare as they walked by. Not my finest hour. (Sidenote: Adults have corrected their children for staring at me while they are doing it themselves. And for the record, I don’t mind kids staring at me. It give me the opportunity to tell a white lie and say this is what happens when you smoke, so don’t ever start! Also, for the record, I have never smoked.)

We would get to a marker and I would say, “Just a half mile more and I’ll stop.” I thought I could half-mile my way around the trail.  We turned back when we thought we were a mile into the trail, but we miscounted and were closer to a mile and a half. I was almost through my water and halfway through my oxygen when we turned back. I completely ran out of oxygen about a half a mile or so from the trailhead. It supremely sucked. But, with any bad experience, there are lessons learned.

First, I realized oxygen really wasn’t helping me much anymore. It’s not that my lungs couldn’t use the boost, as they just reach a point when it doesn’t make much of a difference anymore. So even though running out of oxygen for the first time ever was kind of terrifying, it showed me that I can get along without it. I mean, slowly and leaning on everything around me, but I can do it.

Second, I realized that I really need to pay more attention to those weather warnings and stay the heck inside sometimes. And even though I’m having a good time picking on myself for this choice, I’m glad I did it. I can’t go so far as to say it was fun, but I’m proud of myself for completing almost four miles of trail in a 110-degree heat index.

Third, but not the least of all, my friend proved for about the billionth time how awesome she is. Even when I was fighting back tears of frustration, she never stopped encouraging me. It seems like the less I believe in myself, the more she believes in me.

After that day, I realized that summers like this one are going to mean that I’m not hiking much. I spent a few weeks feeling really sorry for myself, and thinking I was doing the very thing I swore I would never do in letting this dictate my life. But just because I can’t walk seven miles in the heat doesn’t mean I’m beat. It just means I have the opportunity to do other things I enjoy. Like kayak on a lazy river where I can float when I need to rest and jump in when I need to cool off. My big hiking season is going to be winter. The cold never bothered me anyway.

Happy Hiking Anniversary!

About this time last year, I decided I wanted to start hiking again. So, I took a vacation day and did just that, attempting two hikes for my first foray into the woods. About five months later, I was still hiking about every week. In fact, I was so dedicated Dad felt it was necessary to sit me down for an intervention. It was a hot August day.

“It’s like an obsession with you lately,” he said, eyebrows drawn over baby blues, forehead creased with worry. He was rubbing his palms together, doing that thing he does when he doesn’t know how to ask whatever burning question he has that day.

“Why do you feel like you have do to this?”

That was a great question. And by the time he finally sat me down to ask it, I knew the answer.

I’m going to pause for a second to admit I feel sometimes like I take this Sjogren’s thing a bit too seriously. Especially since most people I’ve encountered – either online or in person – act like it is no big deal. And they’re right. Sjogren’s typically isn’t. It’s not cancer or Lupus. It’s typically just an annoying thing you deal with. But when it causes your immune system to try to kill your lungs, it becomes a very big deal.

So when I started hiking again a year ago, after six months of barely being able to walk across the room without stopping to rest halfway, it was a big effing deal. I had a lot of fight in me the year before, making it as long as I did before I finally gave up and went to the ER. (My rheumatologist likes to bring this up frequently. He always says it a little in awe and a little reproachfully, warning me not to do it again.)

For a while, that fight was gone, but I think it needed to be. My body needed time to rest and heal. But that time ended a year ago when I completed my first hike. Walking even just a mile with Gus cranked up to full power was a hard won battle – and I got addicted to the feeling of power I got when I finished.

I finally believed Sjogren’s and Interstitial Lung Disease weren’t going to beat me. I had found my fight again.

But there was another reason for my constant wandering last summer: I wanted to. Again, I know I wasn’t given a terminal diagnosis or anything. But still, I got a wake up call. I went through my 20s working nonstop and trying to finish my degree, rarely stopping to just enjoy life. I kept thinking that I’d work really hard and pay my dues to society, then start traveling and enjoying my life. I had things so backwards.

Flash forward. I’m 29. I’m in the hospital. I have two busted lungs. I’m put on medicine to suppress my immune system. I’m on oxygen, presumably for the rest of my life. I’m trapped like a docked boat. The entire ocean is ahead of me, but I have no way to get away from the shore.

So the wake up call: I had put off doing what I enjoyed in favor of a better-paying job, or more overtime, or another internship. At 29, I was still finishing the degree I had started eight years before. I hadn’t done any of the travel I wanted to do, and suddenly, I was sick. Not just sick – I had a chronic disease.

It took six months after my diagnosis for this hit me. Instead of spending any more of my life doing the things I felt obligated to do, I decided I was going to do the things I wanted to do – hike, and explore and travel. And while I’m still working on that world traveler status, my little adventures around home keep me satisfied for now.

So the answer to Dad’s question was simple: Because I can.

In October, about a year after my initial diagnosis, Dr. B. declared me in “medical remission,” which means remission with the help of medication. He also dropped a bomb on me that I wasn’t expecting: I may not have to take medicine to control it my entire life.

I’ll swear on a stack of Bibles that is not what he told me in my first hospital follow up – but it was the best news I’d heard in a year. After spending the previous six months beating myself up for being so-called responsible in my 20s and wasting the “healthy” years of my life on working, he was handing me back several of my goals. The trick for me is going to be staying patient for the next three to five years it takes to wean off my medication and not throw a world-class tantrum if the Sjogren’s rears its ugly head and I have to start all over again. But there’s hope – and sometimes that the best thing.

The good news doesn’t stop there, folks.

There’s also a chance Gus and I will be officially divorcing. I know, I know. I’ve said this before, but this time I mean it! This time, the doctor is finally starting to agree with me.

With my last pulmonary function test, my lungs were at 67 percent function, up from 62 percent six months before. Even to me, that doesn’t sound like that much of an improvement, but I’m still improving – even after my immune system is under control. My doctor is finally ready to admit that I may not need oxygen forever. (It’s only taken him 18 months to come around.)

I’d be foolish if I didn’t at least admit that while I rarely use oxygen for anything anymore, I still need it for anything cardio-related. I absolutely cannot do anything strenuous without my oxygen levels dropping to dangerous levels. But guess what? I call that an opportunity. A year ago I still couldn’t do anything without it.

In about six more months I’m going back for another pulmonary function test. In this one, Dr. M. will determine if I still need oxygen. This is my deadline to be able to hike without my crutch. While the thought of losing Gus is terrifying, it’s also opening a huge door. Step one, get off oxygen. Step two, get off drugs. Step three, take over the world!

 

Out with a bang

So I originally wrote this post in August, the week following this doomed hike. But I wrote it at work (on my lunch break, of course), and emailed it to myself to post – or at least I thought I did. I don’t know where the email went; I don’t know where the document went. Either I dreamed writing it or it vanished without a trace. So I got annoyed, and then got busy and I’m just getting around to telling this story.

Wrapping up my hiking season

2015-08-09 15.46.15

My best hike last year was a 5-mile trek at East Fork Lake SP. It wasn’t much of an elevation gain, but it has been the greatest distance I’ve had post-busted lungs.

Last summer, my hiking adventure hit its peak with the East Fork Perimeter Trail, the day I beat out five miles for the first time since my lungs were declared busted. I didn’t dwell much on how accomplished I felt in my blog post, but I did go on a rant on Instagram that day. I felt fantastic.

The next weekend wasn’t quite the same. I picked two hikes out of “60 Hikes Within 60 Miles”: Blue Licks Battlefield State Resort Park and Kincaid Lake State Park. I wanted to top my distance from the week before, and I thought two, three-mile hikes would do that, and give me a good rest in between to help me make the distance. It was a great plan.

How to not hike a battlefield

Blue Licks is about two hours south of Cincinnati – about 20 miles from Maysville, Ky. – and it was about an hour and a half from where I was living at the time. Kincaid Lake, near Falmouth, Ky., is about an hour south of Cincinnati. My plan was to leave early and time my hikes so I finished before the heat of midday. Last summer was pretty moderate when it came to heat and humidity, but summer had caught up with us by the time I took this hike.

Well, I screwed myself over. I’m notorious for being late for everything, and I was late getting up, late getting out, and late getting started. When I finally got to Blue Licks, it was a reenactment weekend. (Note: If you’re planning to hike a battlefield, check the schedule, especially in the summer.) This particular location is the spot of the “last battle of the American Revolution,” according to the “60 Hikes” book. For someone like me who likes history and hiking, this park could have been a jackpot. But I pulled in and turned right back around. There was little to no parking and I didn’t feel like exposing my breathless hiking to hordes of people.

By this time we’d been in the car about an hour and a half, and lost our first hike. Emme was about as upset as I was, and she made it plain with her whimpering and whining out the back window as we pulled away from the park.

Who needs water?

2015-08-16 12.33

Because I’m brilliant, I forgot to bring water on the trail on a hot, humid day. I would normally let my dog drink from the creek, but this one looked disgustingly stagnant.

Even though I’ve forgotten some of the details of this hike, I specifically remember packing water. However, it wasn’t to be found. Halfway through, Emme started whining and looking at my backpack – where she knows the water and treats come from – and I was holding my hands up in the symbol she recognizes as “all gone.” She’d whimper and put her nose back to the ground.

The trail does follow a creek for a while, but it was mostly dry. Where there was water, it was covered with algae and flies. I didn’t want to deal with a sick dog on the way home, so I steered the hound away from that.

Let’s talk terrain 

GusScaleLvl5 - cropped

I’m ranking this trail a five based on my prior experience. It really isn’t that rugged of a trail, but it has a long, gradual incline that my lungs just didn’t know how to deal with.

For a normal person, this would be easy/moderate. You’re basically hiking down and then back over and around a couple of ridges. Nothing too major. The only people I saw were four women hiking out from the campground. One of them was carrying a Victoria’s Secret bag, and none of them had broken a sweat, if that tells you how easy this trail is for non-broken people. They looked at me funny and cooed over my dog when they passed, the normal response I get when I hike alone. I get it. What young person wears oxygen and what idiot who wears oxygen enjoys hiking?

I had one problem with this hike: inclines. My pack is usually 15-25 pounds, depending on how much water and oxygen I’m carrying. Metal cans containing compressed air are freaking heavy, man. The hills, while not steep, were long. The trail slipped around the hills, making the incline longer instead of steeper. Flotsam and Jetsam (my lungs) don’t like long inclines.

I threw a trail tantrum

2015-08-16 12.32

Despite my best efforts to dehydrate my dog, she just kept trotting along, leaving no leaf unsniffed.

I was hot, tired, thirsty and gasping for air. My dog was wimpering for water and I felt like the biggest jerk for forgetting it in the car. There was nowhere to sit – no benches, no downed trees, no nothing – so I flopped down in the middle of the trail, in the middle of the hill, and seriously considered going back. But I had to go uphill either way I went, so I decided to keep going.

My rest didn’t last long. Black flies were out in swarms. I think I even saw a buzzard circling over my head. I flopped down, but I couldn’t stop moving because when I did, the cloud of flies around me landed on all of my limbs. My rest probably lasted a couple of minutes before the flies chased me onward.

The rest of the trail was miserable. I may or may not have let a tear or two fall. It was pretty much all uphill back to the car. I don’t have a fond memory of this place, but that’s not the trail or the park’s fault. I gasped through an entire tank of oxygen on the second half of the trail – about a mile. I typically use about a half a tank for that distance and terrain.

Usually, when I complete a trail that was difficult for me, I get a sense of satisfaction and accomplishment – a huge rush of endorphins that makes me feel like I could climb Everest without oxygen.

I didn’t get that feeling this time.

I was irritated with myself for getting so upset and half-killing my poor dog. Determination, not self-pity, would have made that hill a lot less intimidating. But instead of kicking myself in the butt and going on, I beat myself. That was the last hike I attempted until October, and I haven’t tried anything so ambitious again.

It’s time to change that. I can guarantee you I’ll be hitting this one again very soon, just to prove it’s not the boss of me.

How to survive a Sjӧgren’s flare

Well, that summer flare Dr. B. warned me about finally hit about two weeks ago. (I started this post and several others about a week ago when the flare receded for a couple of days, only to come back and kick my butt for several more days.) At the beginning of the summer, my rheumatologist told me that too much sun exposure could cause an increase in symptoms. Knowing this, I canoed for about four hours during the heat of the day two weeks  ago. And then I spent most of the last two weeks feeling like someone was taking a hammer to my joints. If I could have floated in a zero gravity chamber so nothing could touch me, it would have been a dream come true. But hey! It didn’t seem to affect my lungs at all, so I’ll call it a win.

This picture doesn't show  how teensy they are, but the four together are about the size of a fingernail. The day I messed up my dose, I took the four small ones - 4mg and left the one larger one - 5mg - behind. Oops.

This picture doesn’t show how teensy they are, but the four together are about the size of a fingernail. The day I messed up my dose, I took the four small ones – 4mg and left the one larger one – 5mg – behind. Oops.

I must pause to note that the day I felt the worst I can’t completely blame on sun exposure. I spent a day at work unable to focus on a thing the trainer said and unable to even rest my wrists or elbows on the desk. When I got home I realized I took less than half the steroid dose I was supposed to take in the morning. Let me tell you, you don’t realize just how much impact those teensy little pills make until you miss one.

Here’s the best (dumbest) part: I’d totally do it again! Canoeing is awesome. I got to spend a good bit of time with some family I don’t get to see often, and a day of paddling is always a fun. In fact, I am determined to buy a kayak before next summer so I can get out on lakes or up a creek as often as possible –preferably still with my paddle, but you know how my luck goes. Probably after four or ten more trips out I’ll figure a way to keep the flare from being so bad.

Even though laying around does absolutely nothing to help the flare pass more quickly, I was too lazy to get up and get out last week. Instead, I spent more time catching up on some blog reading and being inspired by Instagram feeds. Here’s a short list of fellow adventurers I follow – and if you’re ever having a down day, maybe they can help cheer you up, too.

The Real Hiking Viking

This guy is a veteran who now spends his time hiking. So far this year I’ve followed him around out west. He recently took a break from the Pacific Crest Trail to complete part of the Sierra High Route and will be going back to complete the rest of the PCT. His pictures are phenomenal, and not just because he’s a great photographer. Every time I see one of his photos it only reinforces my determination to hike the PCT the second I can get around without oxygen.

My Alaskan Life

If I could live anywhere, I would choose either Montana or Alaska. I’m super envious of this woman who moved to Alaska from Europe. Every day she delights with pictures of places that I dream about. Mountains, stream, glaciers, helicopter rides, kayaking and hiking are just some of the things she posts regularly. Her feed has me itching for the day I finally set off on my Alaskan adventure.

The Hurt Blogger

When I have weeks like last week and am too lazy to move, this woman makes me feel about two inches tall. She has battled rheumatoid arthritis – dubbed “Arthur” – since she was a child. Nothing I’ve ever dealt with compares with what she deals with on a daily basis, and she’s training to climb Denali. If this girl can keep up with her training and prepare to climb a mountain, I can keep on hiking.

Sturgis Chick

This lady’s trip is wrapping up now, but you can still go back and follow her adventure from South Dakota to the tip of South America and back on her bike. She left her job, sold everything and decided to live on the road. It’s basically what I’d do, except with an SUV or something because I don’t think I could pack that light. Or ride a motorcycle for that long.

The Chronic Adventurer

I started following this guy before I ever got sick, but his blog took on a whole new meaning after the whole autoimmune disorder/lung disease thing started. He has inflammatory bowel disease, and keeps on adventuring despite his health problems. He has periodic stints in the hospital because of his disease, but through it all, he’s kept pushing through. Earlier this year he even completed the London Marathon.

I love a challenge

This is me on a July 4th camping trip directly disregarding doctor's orders and not staying out of the sun ... again. Sunscreen usually works, but you have to actually put it on. But a Buff works in a pinch to keep my skin from breaking out any more. My teenage cousins kept saying I looked like I was in the wild west until I threatened to get a six-shooter and teach them to dance.

This is me on a July 4th camping trip directly disregarding doctor’s orders and not staying out of the sun … again. Sunscreen usually works, but you have to actually put it on. But a Buff works in a pinch to keep my skin from breaking out any more. My teenage cousins kept saying I looked like I was in the wild west until I threatened to get a six-shooter and teach them to dance.

I focus so much on Sjӧgren’s because that’s the source of all my problems, that I forget there’s another diagnosis in the list: Interstitial lung disease. Simply put, it means inflammation in the lungs. This inflammation is what makes it difficult for me to breathe. As the inflammation clears up, my breathing improves. The only caveat to this is that the inflammation was so bad before my treatment started that there is scarring left behind as I heal. (Let that be a lesson to you other stubborn people out there: Waiting several months after you notice you are having trouble breathing is NOT a good idea, no matter how you can justify it to yourself.)

I learned last week that my lung function is up almost 20 percent from where it was in January: I’m up to 62 percent from 46 percent. And while that is awesome – and more than Dr. M. expected – it wasn’t enough to get that oxygen prescription lowered. I actually got a little bit of chastisement for not wearing it into the office. I mean, my oxygen level did drop down to about 83 before I got to his office, so he may have had a point. But just a little one. After all, I took the steps.

When I started asking questions about getting off oxygen, he steadfastly held on to the opinion that I may never get off oxygen. His favorite thing to say is, “You have to remember you didn’t do this to yourself and there was nothing you could do to prevent it.”

Check and double check, although I would argue that had I gone to the doctor and it was diagnosed sooner, my lungs would never have gotten so bad to begin with. So I could have helped it.

This time he added another little statement: “You have to remember this is a chronic condition.”

I keep approaching this like something that just needs a little more time and then I can ignore it completely and go about my life, but that isn’t really the case. It’s a condition that has to be constantly monitored and managed, to protect my lungs especially.

But if you think about it, that’s not much different from other chronic conditions, like diabetes or high blood pressure. They all require medication, monitoring and sacrifices. I can live with these things, no problem. People live with chronic conditions every day; it’s really not a big deal. But he also said I shouldn’t expect much more improvement.

Challenge accepted, Dr. M.

In January, he said the same thing – and I still got better. I’m not sure if he’s trying to manage expectations or if he really thinks I won’t make any more improvement, but I know I will. Between now and my next appointment with him in October, I plan to improve my breathing. I can’t control my lung function – I can only get as far as the scarring will allow me. But I can control Sjӧgren’s and the inflammation it causes, and I can control other health factors. With diet and exercise I can both decrease the load my cardiovascular and pulmonary systems carry and strengthen those systems. Who knows? Maybe I’ll pick up yoga to help me learn to focus on breathing.

What I do know is I plan to shock his socks off in October. And when I summit Forester Pass on the Pacific Crest Trail – elevation 13,153 feet –  he will be the first call I make.

Breaking up is hard to do

About six months after being told I’ll be on oxygen for-ev-errrrrrr, I’m just a few steps away from breaking up with Gus for good!

About six months after being told I’ll be on oxygen for-ev-errrrrrr, I’m just a few steps away from breaking up with Gus for good!

Gus and I have been having some issues lately.

Things were going really great for us for a long time. I mean, we’ve been together for going on eight months now and we were nearly inseparable. If I left, Gus went with me. Even when I was home, he was never far.

But over the last few months, I’ve been taking some space. Some me time. It’s not Gus’s fault; he’s been great. He’s so supportive and understands when I need some time away from him. But the more time I spend away from him, the more I realize that I don’t need him the way I thought I did. I feel terrible leaving him behind, but he’s still being great. I think Gus always knew that we wouldn’t be forever, even if I wasn’t so sure.

So how am I supposed to dump something that has been so supportive during one of the most trying times of my life?

By calling the oxygen company and saying: “Come and get it!”  That’s right, I’m getting close to getting off oxygen completely!

For the last several months, I could feel myself getting better. My oxygen levels don’t drop as far or as fast as they used to and I’m able to get farther on less oxygen. In January I couldn’t cross the room without it, and even on that I was still short of breath after about 10 feet. By February, I still needed oxygen but I wasn’t losing my breath as quickly.

Then I just got stuck for a while. The weather started improving in March and I was “hiking.” I use the term loosely because I was sticking with easy trails and only going short distances with my oxygen blasting just as high as it would go, and still stopping for breaks frequently.

Then April brought more improvement: I stopped sleeping with oxygen, and within a couple of weeks of that I was only using oxygen when I was walking long distances or wimpy hiking. In a few months, I went from needing Gus around the clock to only periodically.

And now I am just baby steps away from getting the all clear from my doctor to go on as-needed basis with Gus. I had another pulmonary function test, where you go in a little glass booth and blow into a tube for an hour. I won’t have the official test results until next week, but the respiratory therapist was impressed with my improvement.

If I’m honest, I’m doing the as-needed thing already. Since my oxygen levels stay stable for normal, everyday life things such as grocery shopping, short walks with the dog or going to the movies, I started leaving without Gus. Let me tell you, I felt naked the first time I did it. And I spent the entire night with this mild panicked feeling in the back of my mind.

Now that my lungs are getting on the healthier bandwagon, the rest of my body needs to get in line. Even though I’m still weaker than I ever remember being, I can still feel myself getting stronger. I feel different when I breathe. I feel different when I move. I mentioned a while back how much it hurt just to breathe when I initially went into the hospital. That’s gone. Completely gone. I inhale … and nothing. Trust me, you never know how good nothing feels until you’ve felt sandpaper in your thoracic cavity.

With any luck, Gus and I will continue to grow apart. But I hope we remain friends. Someday, I may need his help again, and I’d like to know he’ll be there when I do.

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.

Sjӧgren’s in the summertime

Soooo, yeah. Avoiding the sun in the summertime may not work so well for me.

Soooo, yeah. Avoiding the sun in the summertime may not work so well for me.

I have a feeling I’m going to learn something the hard way this summer. (Because the whole eight days in the hospital and lung damage thing wasn’t enough to teach me the first time.) But then this whole autoimmune thing has been a learning curve all winter.

But let me back up a second. I had my first really positive visit with the rheumatologist this week. Yay! Its positive because he said my labs have been looking good, meaning no more inflammation, or at the very least just what any normally functioning person would have in their body. Double yay! He asked me how I’ve been feeling and the answer is GREAT except for this sinus infection that won’t die. But even that only threatened to affect my breathing one day, and I laid the smack down. And by “smack” I mean I took some cough syrup – the good kind with the codeine in it – and went back to bed for the day. Busted that mess right up.

But then Dr. Rheumo said something about staying out of the sun this summer.

I love the sun. I don’t go all bronze beauty in the summer – skin cancer and all that – but I love being outside. That’s part of hiking, camping, etc. Just being in sunshine makes me happy.

The doctor explained that the sun can cause autoimmune conditions to flare. He said, “I’m sorry. I know the hits just keep on coming.” He suggested wearing long sleeves and a floppy hat and staying in the shade if I decide to go out during the heat of the day.

Now. I love my doctor and I trust what he says. But long sleeves + July + Cincinnati =  Cassie turns into a puddle. And I don’t really look good in floppy hats. Tried it once. It was a fail.

So here’s my solution, Sjӧgren’s. I’m going to go outside in the heat of the day. I’m going to ge t some sweat-proof sunscreen, SPF 367, to protect my porcelain skin. I’m going to hike, and camp and scamper around as much as I feel like for as long as my oxygen lasts. And you aren’t going to flare up, mmmmmmmmmmkay?

Any readers out there with Sjӧgren’s or another autoimmune disorder who has tips for surviving the summer sun, please post them in the comments. I’d love to hear what works for you.

How to hike with busted lungs

My collection of necessities for hiking includes tanks of oxygen,  a pulse oximeter to monitor my oxygen levels and a hound dog.

My collection of necessities for hiking includes tanks of oxygen, a pulse oximeter to monitor my oxygen levels and a hound dog.

Its pretty well established on this blog that I love road trips and hiking. They are just about my two favorite activities. So you’d think – as I did – that busted lungs means no more hiking, right? WRONG. I just needed some “modifications.” You know, like the bionic woman.

So what does one need to hike with busted lungs?

  1. Oxygen: Enough to cover the distance
  2. Backpack: To carry oxygen and other supplies
  3. Pulse oximeter: To measure oxygen levels
  4. Timer: To keep track of how much time/oxygen is left
  5. Fitbit: To measure my distance/steps taken so I feel super accomplished
  6. GoPro: For documenting the inevitable trip and fall
  7. Hound Dog: Because what fun is a walk in the woods without being dragged after a squirrel?

So, if you’re like me six months ago, your oxygen therapy knowledge extends to wearing a tube on your face and kids looking at you funny. While those things are true, there is actually a lot more to it. There’s different kinds of tanks, regulators, and concentrators and they all do different things. I like the smaller tanks because they’re easier for me to slip in a bag and sling around. Obviously they give me less time per tank, but mobility is more important to me. I’m not into dragging a wheelie cart behind me with a giant, green tank laying on it.  I’m trying to keep what’s left of my dignity.

The side mesh pockets on my pack are perfect for holding my pulse oximeter and wrench for my oxygen tanks.

The side mesh pockets on my pack are perfect for holding my pulse oximeter and wrench for my oxygen tanks.r

Of course, there is a higher-tech option to using these canisters: a portable oxygen concentrator. These small machines that make oxygen sound like a great idea. Instead of having to deal with oxygen deliveries every week and having only about an hour before I need to replenish, I can have a battery operated machine that just needs juice and I can go on forever! Plus, several portables are approved by the FAA for use on planes, whereas the tanks definitely are not.

Added bonus: If the ads for portables are to be believed, getting one will give me my life back! I can bake cookies with my granddaughters, go fly fishing with my grandson, attend birthday parties in the neighborhood, play my guitar on my front porch and work on my motorcycle in the garage. Where do I sign?!

Can you tell these products are not marketed for an almost 30 year old?

Oh, yeah. Double-barrel action for those longer hikes.

Oh, yeah. Double-barrel action for those longer hikes.

The solution that’s working for me right now ended up being a little closer to home. I already had an organizing pack I bought from Thirty-One a couple of years ago that I modified to use as a camera pack. (I don’t think its still being offered, but I did find some listings on eBay, if you’re interested in the bag.) The dividers didn’t seem padded or sturdy enough to hold my camera and lenses, so my crafty Mom made some extra padding and dividers for the inside of the bag for me. For hiking, I just fold some of the dividers down and viola! Instant oxygen pack. I can slide one canister in and leave the other side for my cameras and gear or lay down all the dividers and get some double-barrel action. If I’m really feeling adventurous – and like carrying around all that weight – I can use some more of my homemade dividers and slide a third tank in the pack and get about three-and-a-half hours of continuous oxygen.

Plus, the backpack strap has a loop on it that is tailor-made for clipping on a GoPro. Make an ad about THAT, oxygen marketers.