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.

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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.

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.

Budgeting oxygen in the Smokies

DSC_3746

Check out our obligatory Stone family photo.

Thanks to my busted up lungs, planning a trip now has an additional step: Making sure I have enough oxygen tanks to get me through whatever amount of time I’ll be gone. So when my parents surprised me with a spur-of-the-moment weekend getaway to the Smokies in January my first thought was, “Oh, crap! Do I have enough oxygen?” followed closely by, “Oh thank God, I need to get OUT!”

The trip was a “Congratulations! You took longer to finish college than Tommy Boy!” gift for FINALLY finishing my bachelor’s degree. It only took eight years and four months to finish — more than double the time it should have taken. But stopping to work, or taking an internship (or two) or just cutting back to save money stretches out that time frame just a bit. So with a carefully budgeted oxygen supply, we loaded up and set off for a much-needed three-day weekend.

My oxygen method of choice is using small, portable oxygen cylinders, also known as “E-tanks.” They are about 18 inches long, 5 inches in diameter and weigh a few pounds. I named him Gus.

Don’t judge. When you can’t leave your house without something, it deserves a name. (My iPhone is Helga. She’s a buxom Scandianavian with a ‘tude.)

Gus came with his own plain, black tote bag he straps into and gives him room to breathe – because you don’t want a leaky tank creating an oxygen pocket in an air-tight space. That could mean a BIG explosion. Usually, I’ll take that ugly black bag, strap in a tank and throw in my wallet and wear that crossbody while I’m running around. But for this trip, I decided to upgrade my oxygen transport method. Instead, I got a mint green version of this backpack from Target, big enough to hold my tank, wallet, camera – and even a pocket for my lipstick! — and hauled that around all weekend.

Cascade Falls ...

A short walk from a nearby parking area will get you to this cascade, but it also attaches to trails that continue to Laurel Falls.

Cascade Falls

Fortunately, we didn’t have to plan too many activities around my breathing, most of what we did involved little walking. We did attempt a “hike” — it was less than a mile, but it was long enough for me. A short trail led back to Cascade Falls, where I nearly got in a fight with rude people who kept walking into my pictures. (Seriously, people. If you see someone with a camera up to her face, maybe you shouldn’t walk right in front of her — especially if she’s carrying a metal can on her back. I’d say if that hits your face, you’ll feel it.)  For the short trail back to Cascade Falls, I’d rate it three oxygen tanks because its easy getting back, but tricky getting out back up the hill.

Greenbriar

Until the park service acquired the land in the early 1900s, this land was owned by farmers. Some cabins still stand and are maintained by the Park Service, but many of them were abandoned and removed.

Greenbrier

Hailed as one of the secret spots of the Great Smoky Mountain National Park, Greenbrier is an area of the park somewhat off the beaten path. It’s proximity to hiking make it a great area if you’re wanting to hit some trails and it also has a river that allows tubing and fishing. Of course, I didn’t try any hikes and getting in a tube in January didn’t seem like a great idea, so I can’t personally vouch for any of these activities. But I can tell you that the drive getting back to the Greenbrier area of the park was exquisite. In spring, you can see a plethora of wildflowers, but in winter the color palate is a little more basic. The only visible leaves were reduced to a dead, brown crunch under our feet and the only color to break it up the bright green moss covering rocks and trees and bits of fern peeking out from the leaves. I imagine the much-touted wildflowers in this part of the park are something to behold; this is definitely a place I want to return to in the spring.

A New Look, A New ME!

photo

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: breathlessadventurer.com.

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.

I am my own worst enemy

Insidious: (adjective) proceeding in a gradual, subtle way, but with harmful effects. (Oxford Dictionary)

I never really understood what that word truly meant until recently.

Unbeknownst to me, my body has been attacking itself. My immune system, always so efficient at dispatching illness, decided my own body was the enemy. It started, I think, with my eyes. I’ve had dry eyes for as long as I can remember, and have been lectured by my optometrists eleventy billion times for abusing my contacts.  Someone would threaten to take them away and I would cry, “No! I promise I’ll be good! Just don’t take them away!” Turns out, contact abuse wasn’t the sole problem.

Then, last spring I got this little, annoying dry cough, that popped up here and there. I’m plagued with seasonal allergies like everyone else in the greater-Cincinnati area, so I started popping Claritin and it went away. Then, one day in September, I woke up and couldn’t breathe very well or stop coughing.

Still, I ignored it for a few days because I’m young and healthy, right? I’m invincible and I’ll just throw off whatever virus is trying to bring me down. I was coming up on mid-terms and my best friend’s wedding and absolutely did not have time to be sick. My mantra became, “I won’t let the microbe beat me!” I kept repeating that for about 14 hours at King’s Island’s Halloween Haunt and  on the dance floor at the wedding, between puffs on an inhaler.

Now, a wiser person than me would stop to say, “Why in the world did you spend 14 hours at an amusement park riding roller coasters and having the bejesus scared out of you if you felt like death and couldn’t breathe?”

I say, why not? I looked at it this way: It’s tradition for my friends and I to pretend like we are not grown-up adults and go to the park from open to close for the Halloween festivities.  Would I regret more skipping the events and resting, or having fun all day and resting the next day?

Answer: I would regret more missing scary creepers, chili cheese fries and pumpkin spice funnel cakes. So I shouted “I won’t let the microbe beat me!” and got on the Beast, which then proceeded to beat me black and blue.

In a way, I did win. The microbe didn’t beat me, because it wasn’t a microbe. But it was a hollow victory because the enemy the entire time was me.

Two trips to the local clinic, three courses of steroids, and a Z-pak later, I was getting worse, not better. Any kind of exertion left me completely out of breath and coughing so hard I sounded like I was literally about to cough up a lung. My ribs ached, my back hurt and I was pulling muscles in my abdomen and back I didn’t even know I had. Breathing brought a sensation akin to a coarse grit sandpaper scraping my lungs.

If I’m honest, I knew something was up and it wasn’t the pneumonia that I was diagnosed with.  Pneumonia doesn’t make you so out of breath after walking up the stairs that you get dizzy and see stars. But I’m stubborn. And I’m young and invincible, right? I just needed some rest, which I would get after midterms and my friend’s wedding.

Well, I got through midterms (failing two-thirds of my classes) and the wedding weekend festivities, and then crashed and burned. When I finally dragged myself back to the clinic, my oxygen levels were 81 (they’re supposed to be 100, so 81 is pretty not good), and that was after two ineffective breathing treatments.  The nurse practitioner read me the riot act for not going to the ER.

“You need to go to the emergency room,” she said, scanning my medical history. “I think when you were in here before I told you to go there if you had breathing trouble again?”

Busted. She did tell me that but who wants to sit in an ER waiting room with all the sick people?

“Well, I just figured I needed some rest and a few more steroids?” I asked, between puffs of Albuterol.

She looked up from the computer screen.

“You’ve had two courses of steroids and this is the third time you’ve been here. I can’t give you more steroids. You need to go to the ER.”

She walked out to give someone a flu shot and stuck her head back in, “And don’t drive yourself. Have someone take you.”

Seven or eight hours later I was officially admitted to the hospital. I was diagnosed with pneumonia (again), started on IV antibiotics and received breathing treatments every few hours. Three days later, I was no better. That’s when Papa Stone stepped in.

Now, I wouldn’t call Dad “laid back,” exactly, but he’s not as short-tempered as I am, most days. I guess watching his baby girl languish in a hospital bed for days was more than he could take. (I suppose I wasn’t languishing, more like doing school work when I could get a wifi connection. But to him, I probably looked like I was languishing.)

“I’ve had pneumonia before, twice,” he said, right index finger jabbing left palm. “And it doesn’t take this long to go away.” Dad wanted a specialist called in.

So the doctor overseeing my care called a pulmonologist, just to appease my father. I know this because I still see that doctor and he told me that’s how he was approached for the consult. He also said that he took one look and knew it wasn’t pneumonia.

Thus started the portion of my inpatient stay that felt like an episode of “House,” just without the rude doctor yelling, “Everybody lies!” and trying to pressure me into risky treatments. Now when the doctor came in, he said I was the talk of the place because no one could figure out why an otherwise healthy 29 year old woke up one morning and couldn’t breathe.

Another specialist was called in, this time a rheumatologist. And finally, after five days in the hospital and 700 vials of blood taken, we had an answer.

I have Sjogren’s Syndrome.

What’s that, you ask? Good question. Depending on which website you are on, this is either the second, third or fourth most common autoimmune disorder, behind Lupus. It means that my immune system is a little confused and thinks my body is some kind of germ that needs to be fought off.

Sjogren’s — pronounced show-grins — most commonly attacks tear ducts and saliva glands, creating its trademark dry eyes and mouth. Check and double check, I have them both. In some cases it can attack your lungs and/or kidneys. My kidneys seem to be safe, however, my lungs are a little worse for the wear.

My initial concern was only if the condition is life-threatening. It isn’t, as long as its managed. In my case, a flare could bring another attack on my lungs and lead to more damage, more difficulty breathing, yadda, yadda, yadda.

The treatment is relatively simple: steroids temporarily and medicine to suppress my over-achieving immune system permanently. A pill or two a day keeps the eight-day inpatient stay away. But one thing I hadn’t counted on is oxygen therapy for the rest of my life.

Because the damage to my lungs was so extensive, I have a fair amount of scar tissue on the lower portion of my lungs. This means I get short of breath easily and I don’t absorb enough oxygen when I breathe.

So when I get frustrated with not being able to do something simple, like take my dog for a walk, I have to remember the innate stubbornness that kept me going while my body was trying to kill itself.

I won’t let it beat me.