Hollow Space

Sometimes a chronic illness makes you feel "hollowed out." Sometimes it's another sort of major life change--a move, the loss of a job, a divorce or the death of someone you love. Whatever it is, it saps your energy. It takes away things you loved that used to fill up your life. It frustrates your plans. 


But this week, I received a blog post from my brother-in-law, who's a Lutheran pastor in northern Iowa, that made me rethink that hollow space this lung disease sometimes creates in my life. And ways for me to productively fill it!

Hollow a space, O God, within my busy schedule this week. You have given me enough time, Lord, now let me take the time to give priority to you. Let me be unhurried and my life uncluttered as I celebrate your wondrous birth. Free me from the tyranny of all the demands upon my life, and help me know your will for me. 

Hollow a space, O God, in my many relationships. You have given me the gift of my friends, now let me keep them. Help me not to smother them, nor use them. But instead, help my spirit stay fresh by drinking deeply from the reservoir of friendships found within each one.  

Hollow a space, O God, in the very center of my being. You have given me all of creation. Let me be renewed and recreated daily by your gracious gifts. Help me get rid of the sludge of selfishness and self-concern that occupies so much of my life. Touch me with your refreshing grace. Help me make room in my spirit for your Spirit. Abide with me, Emmanuel. 

Thank you God, for the gift of Jesus. Help me hallow a space in my life for him. Amen. 

Merry Christmas, and God’s richest blessings to each and everyone. May the birth of the Christ child fill your life with joy and peace all through the New Year. Amen.

Let me echo that. I wish you all the merriest of Christmases and hope that in the new year, you'll be blessed with fresh hope, fresh faith and fresh love!

No Potpourri Please!

from Lexi Eddings

One of my frustrations with having a chronic lung condition is that I've become hyper-sensitive to smells.  Last summer we visited my nephew and his scented oil machine threatened to send me into spasms. Bless his heart, he immediately unplugged it, but the chemicals were still wafting throughout his apartment, coating my lungs with every breath. I could taste them in the back of my throat and couldn't breathe easy until we left.

Not the way I wanted the visit to go.

The members of my church and community choir know about my problem and have been so good to stop wearing perfumes or after shaves. But sometimes, someone forgets and uses hairspray or an aerosol deodorant or liberally coats themselves with baby powder. It's easy to do. Why shouldn't they? They have no problem with those scents.

But when they do, my throat constricts, my singing voice gets ragged, and I start coughing almost uncontrollably. Don't get me wrong. I love being the center of attention, but I really don't want to get it this way!

I hate this. And what I hate most of all is that I have to ask for help in dealing with it. And then my friends feel bad if they forget.

I've had to make changes at home too. I cook with olive oil instead of spraying Pam on my skillet. Anything that's aerosolized is super bad for me. It's ok. We're probably healthier for using olive oil.

On my doc's orders, I have a cleaning service come in every couple of weeks because I can't chance inhaling the chemical smells of the cleaners used. I spend the morning visiting my folks while someone else is dusting, scubbing and swiffering. (I've tried to feel sad about that, but I just can't. Billie & the rest of the ladies from Dust till Dawn do such a lovely job!)

This year, when we brought the artificial Christmas tree down from the attic and started unwrapping all the love-laden handmade ornaments, the dust clogged me up almost immediately.

Next year, we'll have to think about getting living Norfolk pine in a pot and decorate it sparsely. I'll divvy up the other ornaments between our kids and then donate what's left to the charity that benefits our local hospital.

The strawberry in the situation is that I'm totally ok with natural smells. Walking through a pine forest is wonderful. Inhaling a pine scented air freshener not so much.

There may be someone in your life who, like me, is dibilitated by chemical smells. Sooo....here's a thought if you'd like to give your house a Christmas-y smell without any danger to someone who has problems with scents. Make some wassail!

Here's my recipe:

Lexi's Surefire Heavenly Fragrant Wassail

Ingredients:

Apple Cider (64 oz.)

Cranberry Juice (32 oz.)

Orange, 1 

Whole cloves (lots of them!)

Ground Nutmeg 1/4 tsp

Ground Ginger 1/4 tsp

Cinnamon sticks, 4

Directions:

Pour cider & juice into a stock pot or slow cooker. Add nutmeg, ginger and cinnamon sticks. Poke whole cloves into the orange and float it in the liquid. Bring the pot to a boil, then set it to simmer and enjoy the wonderful aroma that will fill your home with Christmas cheer! 

Oh! And it'll taste great too!

Have a wonderful holiday season!

The Boy in the Plastic Bubble

Remember The Boy in the Plastic Bubble. It was a John Travolta movie back in the 70's about a kid who was born with an inadequate immune system and had to live his life in a hermetically sealed room, lest a common cold kill him.

In the movie, he ventured out to school in something like a space suit and fell in love with his next door neighbor. In the end, he decided living a full life was more important that living a long one. He & his girl rode off into the sunset on the back of a horse.

The story was inspired by the very real experience of David Vetter, who was born with SCID (Severe Combined Imunodeficiency). Unlike in the movie, David died at the age of 12 after an unsuccessful bone marrow transplant from his sister.

My heart goes out to him and his family. And to all sufferers of HIV-AIDS. To anyone whose immune system is not able to protect them from the invisible treats around us.

My own immune system is what they call "suppressed." I take meds to make sure it is. It has to be because it seems to be what is attacking my lungs. As a result, when I get a cold, it hangs on f-o-r-e-v-e-r and I have to be careful not to let congestion migrate from my head to my chest. I'm fighting one right now that I've been wrangling with for about three weeks. This is a terrible time of year for it what with all the Christmas concerts we have scheduled. You see, I can't sing as well as usual and sometimes, not at all. I feel like I'm letting the director down.

Granted, this is a small inconvenience compared to David Vetter's situation, but it's frustrating anyway.

Knowing I'm susceptible to infection, it's tempting to withdraw, to keep from mixing with others. But that's no way to live. I can't wrap myself in a bubble. I can't give up on having friends and adventures. And even though I'm having trouble singing right now, I don't want to throw in the towel. For one thing, the controlled breathing is good for me. And for another, music nourishes my soul. It helps me believe I'm still myself, that I can still connect with others and bring something of worth to them.

So I'm hoping you'll say a little prayer for me. Our Christmas cantata is set for this Sunday. I'd sure like to be able to do more than just "make a joyful noise."

Here's one of the songs on our program. Though this recording is not of our choir, it give you an idea of what we've been working on. Click through the ad at the beginning and enjoy!

Blog Trolling

from Lexi Eddings...

I'm a fan of blogs. Even though I am on Twitter & FB, I love the longer format available on a blog. It's hard to really communicate in 140 characters or in the photo/vid/meme rich environment on social networks. So I'm on the lookout for blogs about things that interest me.

Like travel.

I happened across a blog by a guy who was taking a 113 day round the World Cruise. Each day, he shared his observations and doings, both on the ship and on some breathtaking excursions. He and his wife were very fit--a day when they only walked 5 miles was a slow day for them--so they often took off on adventures that involved lots of activity. I was fascinated. It was almost like taking the trip myself. I binge-read his whole voyage!

I totally agreed with him about grumpy travelers who visit other places expecting everything to be just like home. I cringed with him over people who didn't respect the sacred spaces of other cultures or behaved like stereotypical "ugly Americans." And I share his disgust with tourists who haggle over a dollar on some handmade trinket when they've spent thousands of dollars to get to that exotic market in the first place.

But he left a bad taste in my mouth a time or two.  He made a few snide comments about fellow travelers who didn't walk fast enough on the promenade deck for his taste. Then there was snarky observation about walking behind an overweight woman whose bottom jiggled in white yoga pants "like a pair of 'possoms fighting in a bag." (Ok, I'll give him points for a clever visual, but it's still a comment worthy of a mean girl.)

The worst post was about the day he was frustrated because too many people with disabilities were allowed on an excursion and their mobility issues slowed him & his wife down.

Really?

Before NSIP reared its ugly head in my life, I used to walk the treadmill at a snappy 3.5 miles per hour without breaking a sweat. Now with my lung condition, 2.0 is my steady pace--2.5 on a good day but only for a few minutes at a time. But even if I could only do 1 mile an hour, I'd still try to do it.

As long as I possibly can.

So to the World Cruise Blogger, I say: Life belongs to everyone who's still breathing. I intend to continue to travel and have as many adventures as my health and wallet allows. I try not to inconvenience others, but for pity's sake, have a little compassion! If you have to wait a little longer because of me or someone like me, take that moment to thank God that you are healthy and fit right now.

And pray that you never become the one who slows someone else down.

Let Your Light Shine!

from Lexi Eddings...

The days are getting shorter. It's still dark when my body tells me it's time to get up and evenings fall so quickly, I'm sometimes ready for bed by eight.

Clearly, my body clock is kind of whacked out by the change of seasons. I don't think I have SAD (Seasonal Affective Disorder). I'm generally a cheerful person. But everyone can use a little pick-me-up sometimes.

Here are a few things I do to improve my mood:

Exercise--30 minutes on the treadmill and I'm bursting with a self-righteous glow!

Take vitamin D--Our bodies will make their own D if we get enough sunlight, but if you live north of Atlanta, the sun doesn't get high enough in the sky during the winter months for ultraviolet rays to penetrate the atmosphere. You can get D from canned tuna, fortified cereals and milk, but I don't usually eat those, so I take a supplement. Vitamin D is added to both my calcium pill and multi-vitamin.

Seek the sun--The DH and I have a short cruise to Mexico/Belize & Honduras planned for January. Not only will we get a chance to naturally beef up our Vitamin D reserves, anticipating the trip is a guaranteed mood lifter! If you can be flexible with your travel plans, a last minute cruise is often a great deal too.

Help someone else--When my kids were young we delivered meals-on-wheels one day a week. They always finished the route with grateful hearts. When you get your mind off yourself, your problems tend to shrink. In my book, The Coldwater Warm Hearts Club, my little group of stealthy do-gooders realize that they always get more than they give.

 So how about you? How do you lift your spirits when you're down?    

S

Truth or Myth

from Lexi Eddings...

It's been six years since I learned I have a chronic lung condition. When I was first diagnosed, I didn't know what to expect, but the things I read online scared me. Mostly, the take-away was that this disease would shave years, if not decades, from my life. I decided to stop doing Google searches.

Instead of fretting about what may come, I focused on what I could do each day. I started walking on a treadmill. My docs and I experimented with different types of meds to control the fibrotic growth in my lungs. I have a circle of family and friends who pray for me regularly. I wake each morning and tell myself, "NSIP isn't going to kill me today."

My journey has produced a few things that surprised me:

• MYTH: When people see me with Herkimer, my portable oxygen concentrator, they assume I was, or  am, a smoker.

• TRUTH: I've never smoked. I was a vocal major in college. It's death to a singing voice. My doctor doesn't know what caused my NSIP, but smoking wasn't a factor. However, when I walk past a group of teenagers who are smoking away, I have been known to slow down a little to let them get a good look at Herkimer, and hear his rhythmic click-and-whoosh. Then I say, "Just keep puffing, kids." and let them draw their own conclusions.

• MYTH: Nothing in my environment needs to change to accommodate my condition.

• TRUTH: Carpets, even tight, flat weaves, are evil. When I'm pushing Herkimer in his rolling cart, I really appreciate hard surface floors. During our 2014 home remodel, our contractor went the extra mile and made sure all the transitions from one room to the next had no raised thresholds. I bless the man's name every day. 

• MYTH: I can still do the things I love.

• TRUTH: Sometimes. For a couple of years, my cough was so persistent, I couldn't sing. When I opened my mouth, I had no idea what would come out. Matching pitch was a crap shoot. Now, things seem to have settled enough for my voice to come back...somewhat. It'll never be what it once was, but I can sing well enough to "make a joyful noise!" Sadly, I still can't ballroom dance with my husband.

• MYTH: My lung condition is chronic and degenerative. Like Beethoven's deafness, I will be "never better, always worse."

• TRUTH: Boy, I hope that's a myth. I have to believe it is. I've seen dips of decline and surges of improvement in my lung function over the past six years. Even my most recent tests at Mayo Clinic bear out this clinical self-evaluation: I am better than I was, say, at the beginning of 2014. While I still need Herkimer to walk a mile or two on the treadmill, I can now move around my home with the stately grace of a three-toed sloth without him! I can even do simple tasks like cooking or laundry while maintaining good O2 sats. That may not sound like much to you, but believe me, I'm tickled to pieces!

As I continue through this part of my life, I'm sure there will be more surprises--some good, some not--but that's the way life is. We can only live it one day at a time. 

And today is a good day.

***

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." ~ Matthew 6:34

Reserved Parking

Since I use supplemental O2 when I'm active, I'm eligible for a handicapped parking sticker.

I fought against getting one for months.

If I had one of those things hanging from my rear view mirror, it would mean admitting that I'm not normal, that the ordinary act of going to the store is much more of a production number for me. I didn't want to think of myself as disabled.

Still don't.

I guess I was too prideful to admit I'd be helped by having easier access to shops and places of business.

But then I started thinking about how much a handicap placard would help my family. My Dear Husband doesn't qualify for a sign, but he's had one knee surgery and may need more. He wouldn't say no to a shorter jaunt into wherever we're going.

We often travel with my parents who, though they are both still active, really appreciate snagging a close parking space.

So, I swallowed my pride and went to the DMV. It wasn't hard to get two hanging signs. They were even free. And because the fact that I use O2 is pretty obvious, I didn't even have to have a letter from my doctor.

Now when I pull into one of those blue-labeled spaces, I try not to think of it as handicapped parking. I prefer to think of it as "reserved!" Everywhere I go, I get bumped to the head of the line. It's not that I demand it, or feel in any way entitled. People just seem to want to go out of their way to be kind.

I have decided to let them.

Jesus said it's more blessed to give than to receive. Most of the time, that's true. I'd much rather be the one in a position to give.

But at the same time, I feel blessed by the kindness of a society that makes allowances for people with mobility issues.

It just took me a while to acquire enough grace and humility to accept it.

"Affordable" Used to Mean Something

We had a plan.

When my DH retired at the end of 2014, we went on COBRA for the 18 months it was allowed. Granted, the premiums were like buying a new refrigerator every month, but forget what you've heard about "Cadillac" plans. This insurance was a Rolls Royce.

It covered EVERYTHING! My trips to Mayo Clinic, several rounds of intensive pulmonary tests both there and here closer to home, knee and cataract surgery for the DH, as well as the astoundingly expensive maintenance meds that keep me breathing and functioning more or less like a person--and all without a dime of deductible.

Ok, I'll admit it. We were spoiled. It was expensive, but there were no surprises. Even if we'd had an emergency, we knew what our healthcare costs would be.

Then when our COBRA eligibility ran out, we figured one or both of us would enroll in the local college and sign up for student insurance. Since we'd be part of a low-risk pool, the rates were very affordable--about $4800 a year for decent 80/20 coverage for both of us. Besides, each September when I'm not in class somewhere, I feel like I'm missing something.

The Affordable Care Act changed all that. Since the law went into effect, colleges no longer offer insurance to their students. They can stay on their parents' plans until they're 26 or be forced into the Marketplace.

So when we could no longer get our COBRA insurance, we bit the bullet and signed up for a policy on Healthcare.gov for the last half of this year. It was really ridiculous. Each month, we were still buying a refrigerator, but now our monthly premium (read: tax) pays for very little. Essentially, we're self-insuring since we're not likely to spend more than the over $10K deductible.

And now it's time to sign up for 2017. Can you really call it a Marketplace if there's only one provider available?

We received a letter informing us that our current plan's premium will be increasing by...hold onto your knickers...more than 100%!

I've got to confess. It totally knocked the wind out of my sails.

But we're not the only ones groaning under this system. One of my friends is not a fan of western medicine, so she opted NOT to have insurance last year. Unfortunately, she had to have an emergency appendectomy and no amount of herbs can fix that. But she's a very responsible person and had money in her savings to pay the hospital and doctors for her care. Her medical expenses topped $20K, but because she paid them herself, the ACA requires her to also pay a hefty PENALTY for not having insurance!

There's something wrong with this picture.

I'm sorry for this rant. I usually don't fuss like this, but I don't know what the answer is. Clearly, there is no "Affordable" in the Affordable Care Act.

I find myself wishing I was taking classes at our local college and paying for my healthcare where I pay my tuition.

How about you? Do you have insurance through your job? Medicare? Or are you, like us, in that no-man's land of the early retired or self-employed? What do you think should happen to fix the system?

Jesus Crosses the Line

I don't usually copy and paste other people's blogs, but this one really touched me. It's a devotion from my brother-in-law, who's a Lutheran pastor. Hope it touches you, too!

Jesus crosses the line!

Matthew 28:20  - Remember, I am with you always…

I recently had the privilege of giving a blessing to a young boy in preparation for ear surgery in order to put in tubes. He had been to the operating room the week before where the doctors had explained what was going to happen during his surgery. He had been told that past a certain line, only the doctors and nurses could go. But his parents and grandparents could stay behind the line and watch what was happening to him. 

After church last Sunday, I talked with this young lad about his surgery. In a pastoral sort of way, I reminded him that Jesus would be with him all the way through the surgery. Suddenly the young boy asked, Can Jesus cross the line? His mother explained what the doctors had told the boy, about the line beyond which only the doctors and nurses could cross. I reassured him that yes, Jesus could cross the line. 

The surgery went fine for the young lad! But his question rings in my ears. Can Jesus cross the lines of our lives? So often we make a distinction between where we want Jesus and where we don’t want him to be. We want Jesus in church on Sunday mornings; we want Jesus there when we are sick or have some emergency in our lives. We want Jesus around on our terms, at our desire. 

But we forget that Jesus crosses all lines! Jesus is in all parts of our life. Certainly, Jesus is at the emergencies that occur in our life and during the hardest times for us to endure. Jesus is present when we are sick and undergoing surgery. But Jesus is also there when we may not expect him or even want him to be there. He is there when we go out drinking with our friends. He is there when we get mad or angry with a family member or with a stranger. He is there when we are acting at our worst. 

And yet, Jesus still loves us, he still cares for us, he still keeps on crossing the lines of our lives to take care of us. My little friend reminded me that Jesus crosses all lines to love us. Amen. 

Dear God, help me remember that you are with me always. Amen.   

***

Amen. I'm so glad wherever I go, whatever I'm dealing with, I don't have to go through it alone.

An Inconvenient Headcold

For most folks, a cold is a nuisance. It means you need to carry a hanky or a packet of tissues. You might feel rundown and miss a day of work or two. Then the virus runs its course and you're back to your old self with the added benefit of being forever immune to that particular bug.

I used to say one of the benefits of hitting my 50's was that I'd already met so many cold viruses.

I don't say that any more.

Since I've been on prednisone for about 6 years, my immune system is suppressed. Even if I have made a virus's acquaintance, my antibodies don't exactly spring into action. They stroll toward the infection.

Right now I'm entering week 2 of the same cold my daughter and DH shook off in a couple of days. I'm doing everything I should--rest, fluids, fever abatement. My main concern is that I hope it stays in my head and doesn't migrate to my chest. With my lung condition, that could mean a trip to the hospital.

Fortunately, this is only the 2nd time I've had a cold this year. I'm pretty careful about hand sanitation, but there's not much defense against something that's airborne. When we visited Japan a few years ago, we discovered it was not unusual for the residents of Tokyo to wear masks in public. I wasn't ever sure if they were protecting themselves or if they had a cold and didn't want to spread it. Anyway, what's normal and accepted there would be viewed suspiciously here.

But don't worry. Even without resorting to a surgical mask each time I step outside, I'll kick this thing. It'll just take me longer than most.

And in the meantime, it's the perfect excuse to take a nap!

So how about it? Do you have any favorite home remedy that gives you cold relief? 

What does that Prescription Really Cost?

My DH spent his entire career in travel IT. If you've tried to book a flight, hotel or cruise, you know the price of the trip varies depending on where you want to go, how far out you book, day of the week, or even which site you use to make your purchase. There is no objective standard, like say, so much per mile per seat. That would make too much sense.

It's sort of travel roulette.

Unfortunately, the same sort of thing goes on every time you go to the pharmacy. My doc said I had to up my dosage of a common blood pressure medicine this week. This is a maintenance med, so I asked for a 90 day prescription. It's more convenient than a 30 supply. When I took the script to my local Walmart, they told me this very common, generic drug would cost me over $70.00.

Then I whipped out my new insurance card. We ran out of COBRA in August and, while I don't miss the premiums that were large enough to buy a new refrigerator each month, I do miss the Cadillac coverage it offered. We now have a Silver level Obamacare plan with ridiculous deductibles, but I thought I'd see if it would do anything about this prescription. First off, according to my new insurance, I could only get a 30 day supply. Really? For a drug I'll likely be on for the rest of my life if I don't want to stroke out? The new price was $15 for 30 pills.

OK. $45 for 90 days worth is less than $71.

Then I remembered the GoodRX card in my purse.

"What if we use this?" I asked the long-suffering pharmacy tech.

She punched a button or two. "That'll be $17.00 for a 90 day supply."

Ding, ding, ding! We have a winner!

I was glad to get a decent price, but it made me wonder why there should be such a discrepancy between paying out of pocket, using insurance, or a discount program. The drug is the same. Why is there a $54.00 difference? Where is that money going? Who benefits? Why is the insurance company stepping between me and my doctor by trying to dictate how many pills I can buy at one time?

I don't know if anyone can answer these questions and this is frankly one of the cheapest prescriptions among the drug cornucopia I take each day. $54.00 doesn't make such a big difference. But when a prescription starts out around $1700.00 out of pocket for a 30 day supply, these questions get huge.

Right now, I'm very thankful for GoodRX.

Trading Places

My Dear Husband has been doing his best to take care of me since I was diagnosed with NSIP back in 2010. He makes sure I get to the doctor, have the equipment and meds I need to deal with my oxygen issues and lovingly supports me in every way.

I'm a lucky girl and I know it. But at the same time, it's hard to always be on the receiving end of caregiving.

So when the DH needed knee surgery, I was finally able to return the favor. I could monitor his meds and pain issues. Did he need some ice to bring down the swelling? Another Advil? A hand with a sponge bath?

I jumped at the chance to help. (And not just with the sponge baths!)

It felt good to take care of him for a change. Jesus was right. It really is more blessed to give than to receive.

He's completely recovered from his surgery now, back to doing all the activities he enjoyed before he went under the knife, and trying out a few new ones. In fact, today, he's kayaking for the first time! I can't wait to hear how he enjoyed it!

And in the meantime, I've got a roast on for when he gets back and I'm always looking for ways to continue to take care of him. It feels good.

In fact, it's sort of the main theme of my upcoming book, The Coldwater Warm Hearts Club. This stealthy group of do-gooders understand that the best way to get your mind off your own problems is to help someone else with theirs.

So, no matter what your health situation, I encourage you to look for ways to help and take care of those around you. Sometimes, even a kind word, a promise of prayer or a listening ear is enough of a blessing to lift someone else's spirit.

And your own...

Control Freaks Rule!

Ok, I'll admit it. I used to be a control freak. If I was traveling with a group, I wanted to drive. If my kids didn't lay the tableware correctly, I'd come behind them and rearrange the knives, spoons and forks. As I've grown older, I've mellowed a bit, but there are a few times when my "Control Issues" are still helpful.

One is in maintaining a clean, healthy environment now that the meds I take to keep my NSIP at bay have weakened my immune system.  It's easy when I'm at home. We have no carpet in our house, so regular swiffering keeps dust down. Since I'm a minimalist at heart, keeping the clutter at bay is not a problem. At home, I can control the quality and quantity of food I eat. My water is filtered and no matter how muggy it gets outside, the AC keeps the air inside from becoming too "chewy" for me to comfortably breathe.

No problem, right?

Not until I want to travel, which is something I've always loved. In high school, my English teacher had us write a letter to our older selves to remind us of what we felt was important for our lives. I wanted to see the world.

I still do.  

But on our recent cruise to the South Pacific, I picked up a respiratory bug that had me coughing and cacking for over a month. The ship was scrupulously clean, but whenever you have that many people in an enclosed environment, you have potential for infection. So even though we are hoping to do a Norwegian cruise next year, my Dear Husband decided we needed to change how we travel when our feet are dry.

Instead of hopping from one hotel to another, we decided to buy a Coachman Freedom Express by Forest River--a green RV company that uses products that don't "out-gas." Formaldehyde found in many RVs is a problem for people with respiratory issues like me.

There's no carpeting in our "tiny house" so it's a snap to keep clean. I can sleep on my own bed, on sheets that have been laundered in scent free detergent, and use my own clean bathroom along the way. We'll pack up the tiny kitchen with the foods we're used to and fill the tanks with our own filtered water.

Our little RV is my ticket to keep rolling as long as I can.

When I was first diagnosed with NSIP, I realized the disease was something completely out of my control--a sobering thought for a control freak. My attitude toward what was happening was all I could call mine. Since I can't be in control, I decided then to consciously choose gratitude as my default position. I am so thankful for the people in my life, for the prayers of my family and friends, and for all the technologies and meds available to help me live as normally as possible.

And I'm also thankful that my world is not shrinking. I'm not done having adventures.

Our first big trip is up to Mayo Clinic in Rochester. Next Tuesday, I'm having my regular breathing tests, plus a high altitude evaluation to make sure I can stand an international flight for our Norway trip. On a domestic flight, the cabin pressure is like being at 8000 ft. On a flight overseas, the pressure heads up to 10,000. I hope Herkimer (my beloved portable oxygen concentrator) is up to the challenge.

If I can get an internet connection while we camp, I'll post updates on the road!

Morbid much?

So now we're home from the wonderful trip to French Polynesia. The cruise was amazing and I feel so very blessed to have been able to make the voyage, even with all my O2 equipment in tow.

However, not everyone who steps onto a cruise ship walks off. I'm not talking about the sad incident where a mother of 4 fell off the railing on a Carnival Cruise recently and was never found. I'm talking about those who die of natural causes on board.

I'd never thought about it much until we had lunch one day with a fellow and his wife who brought up the subject. He was telling about a different cruise where they'd been struck by how often the fresh flowers that decorate the dining tables, common areas and staterooms were changed. They'd never seen so many arrangements on board before. When they asked a crew member about it, he admitted that they'd had more people die on the trip than they'd planned for so they had to make more room in the cooler for the extra bodies.

Planned for?

Yes. Cruise lines plan for everything. After all, people have been dying at sea for millennia and not all of them have been buried at sea. Admiral Nelson's body, for example, was brought home after the Battle of Trafalgar in a barrel filled with brandy.  Now cruise ships estimate how much refrigerated space they'll need to return deceased passengers to their home port.

In the Q&A session with the captain, he admitted that during the 111-day Round the World cruise, they expect 4 deaths. Given the age demographic of passengers who can afford such a cruise and have the leisure time to take it, I'm not surprised.

And I'm not sad either. We all have to die somewhere. Why not shuffle off this mortal coil while you're having an adventure?

If I have anything to say about it, I'll finish up a cruise in a refrigerator someday. And I'll smile down from heaven while everyone else enjoys the extra flowers...

In Praise of Travel Insurance...

This is the first time we decided to buy travel insurance for our cruise. Even though we hope not to use it, I have to admit it gives me real peace of mind. Especially after what happened this morning...

We've been at sea for a number of days (Read: Since left Kona, Hawai'i and breezed past Fanning Island without stopping, I don't remember the last time the floor wasn't rocking under my feet!) But as we came alongside the windward side of the beautiful island of Rarotonga, I didn't hold out much hope. There's no pier here, so the cruise ship has to drop anchor, lower the tenders (which double as life boats) and ferry passengers to shore in groups of 120 or so.

The captain did his best. He tried several different times to situate the Westerdam so she wouldn't drift in the rolling swells. The anchor wouldn't hold. The tenders were pitching so violently alongside, there was no way they could allow non-crew members to make the leap from the platform near the waterline into the open tender hatch. One misstep and someone could be crushed between the tender and the ship. So the captain cancelled the port of call.

However, the crew of the Westerdam put half a dozen tenders into the water to ferry in the donations the ship had intended to leave at Fanning Island. The Red Cross on Rarotonga was happy to meet them at the dock to receive the goods and promised to try to send some of it to Fanning. Then one of the passengers, who's medical situation was more than the ship's infirmary could deal with, was lifted carefully on a gurney and taken by tender to the waiting ambulance, and an emergency medical airlift to Australia. 

Let me be quick to say that cruising is one of the best ways for someone with health challenges to travel. There are a number of guests who, like me, require supplemental O2. There are many wheelchairs and motorized scooters on board. There are even a few blind passengers. The crew bends over backward to help. And the fact that there is a fully staffed medical center with doctors and nurses, x-ray machines and all sorts of bells and whistles, means they can take care of lots of things that come up.

But when they can't, the Holland American line moves heaven and earth to get their guests to on shore help. And that's where travel insurance comes in. 

If, God forbid, something happened that required Brian or I to need to be airlifted home, the insurance we bought will spend up to a million dollars to get us there. Since we're sort of in the middle of nowhere, (the Pacific Ocean is the largest geographic feature on the planet, after all!) emergency medical flights from here might just run up to that. It's comforting to know we've got it covered just in case.

So now we're on our way to Raiatea and real pier. It's almost time for another splendid supper in the Vista dining room and the show tonight is an Elton John impersonator. We should recognize a lot of the songs. 

Even if we haven't been able to walk the beaches on Rarotonga, life is good. And we feel very safe on the Westerdam. 

Things I've Never Done on a Cruise Ship...

I've done several things on this cruise that I've never done on a ship before. For example:

1. I sent clothes out to be laundered. I've used the self-serve laundromat on cruise ships before, but the Westerdam doesn't have one. Hence, the need to let someone else fold my undies.
2. I sang karioke.  Yes, I have a music degree and all, but I've never stood up in front of a bunch of strangers with a microphone and tried to sing to a taped accompaniment. Until this trip.
3. I found out first hand where the infirmary is.  

Yep, I made a trip to the shipboard doc yesterday. But it wasn't for me. My DH developed a bad cough and when his eyes started looking red and infected, I insisted that he visit the infirmary. The doc fixed him up with antibiotic eye drops and a stronger decongestant than we'd brought with us. He's resting well and feeling better now.

And the fourth thing I've never done on a cruise ship:

        4. I decided not to go ashore to protect the natives. 

When Captain Cook first visited the Hawaiian Islands in the 18th century, he estimated there were almost a million inhabitants. Within 70 years, there were only 88,000. The English brought new diseases for which the islanders had no immunity whatsoever.  

Before the captain cancelled our call to the remote island of Tabuaeran (details on my author blog The Coldwater Gazette), the DH and I had already decided we'd remain on board ship. If we're bearing viruses, we want to keep them to ourselves.

That goes for our fellow passengers too. A ship is sort of a floating petri dish. We've been keeping to our cabin while this cold virus works its way out of our systems. When we do venture out, we take pains not to touch anything and make frequent use of the hand sanitizers. 

Of course, I do that anyway since my immune system is suppressed by the meds I take. But now I'm doing it to protect others instead of feeling precious about myself. 

That's actually a nice change. 

Finding the strawberry in the situation...

I try to look on the bright side. I really do.

But sometimes, lugging around Herkimer gets a little tiresome. My POC (Portable Oxygen Concentrator) makes my mobility possible, but he's also awkward in tight places and in a crowd I live in fear that someone will trip over his rolling cart.

It helps that when we leave the ship for the uneven ground of a shore excursion, my DH wears Herkimer on his back. Of course, this means we're tethered together by my 7 ft. cannula, but fortunately, we enjoy each other's company. Occasionally, we get tangled up and have to do a few pirouettes, but then we soldier on.

So, there's the strawberry in the situation. I may be dependent on Herkimer for the extra O2 I need, but I'm so tremendously blessed to have a husband I can count on to help lighten my load.

I need him like I need my next breath. And because of him, even with this lung disease, I'm the luckiest woman alive.

How to Read a Map

Well, sometimes plans change. We didn't fly to San Diego. (If you'd like to know why, check out my author blog for the whole story.) We decided to drive instead.

In many ways, driving is easier than flying if you're using supplemental O2. Herkimer (my Portable Oxygen Concentrator) can be plugged in and I don't have to worry about changing batteries. Plus I don't need him when I'm driving or riding in the van if I'm not at a higher elevation than about 3000 ft.

What I didn't consider is that from Amarillo, Texas to Flagstaff, AZ the route is almost a constant climb, with much of the way above a mile high. Flagstaff itself tops out at over 7000 ft. Even at that elevation, if I use Herkimer, I can maintain a healthy O2 sat while seated, but any sort of activity reduces me to a slug-like state.

This makes me a little sad. I used to be a mountain person. I've lived in Colorado, Wyoming and Utah. Our house in Park City was at 7200 ft and I used to be able to hike in our neighborhood without huffing like an old horse.

But it was lovely to see some snow peaks again, even if I can't be active in them.

Fortunately, it was all downhill from Flagstaff. In fact, once we crossed over from Yuma to California, we actually dipped below sea level! The lowest the route dipped was -53. I actually felt like I was getting an oxygen rush!

Then I-8 starts a rapid ascent to over 4100 ft through the Vallecito Mountains. What an O2 roller coaster!

I did ok and we arrived alive in San Diego. We were careful to overnight in places that were low enough for Morpheus (my bi-pap) to keep me humming through the night. But from now on, when I plot out a route, I'll be sure to check for the little numbers on the map that indicate elevation.

Those are even more important for me than distance from Point A to B.

Travels with Herkimer*

*Herkimer is my pet name for my POC (Portable Oxygen Concentrator)

Ok. The countdown has begun. In less than a week, my DH and I will embark on the voyage of our lives! We're flying to San Diego where we'll board Holland America's Westerdam for a 30 day cruise to Hawaii and the islands of the South Pacific.

I'm still pinching myself. 

We've always been enthusiastic travelers. Our kids had passports from the time they were 8 and 6 years old. Since my husband was a travel industry IT guy, we managed to make lots of trips we couldn't have otherwise afforded using flight benefits and tag-along business trips. But now the kids are grown and my hubby is retired. Our adventures can be just about us now.

Well, us and all the medical equipment I have to lug around in order to function.

Cruise ships and airlines make every effort to accommodate guests with special needs, but they require advance notice. Months ago, I had to submit my request to carry Herkimer on. Oxygen tanks are not allows on airplanes, but my POC is FAA approved and I can use it during our flights. This is a good thing since a pressurized cabin is like being at 8000 ft above sea level. At that elevation, I seriously need an extra puff of O2 to maintain good sats. When I arrive at the airport, I'll need to produce my prescription for the device, evidence that I'm carrying 1 1/2 times more battery life than I'll need to complete my travel and permission from Oxygen To Go (the agency that vets FAA approved devices) in order to board.

The upside is that I'll probably be shuffled into a wheel chair and my DH and I will hop to the front of the security line. 

Last year, Herkimer died on me without warning and I went without supplemental O2 for a couple of days while waiting for his replacement. Not fun, but at least  I was at home when it happened. I crept about the house with all the vim and vigor of a 3 toed sloth. I didn't want to find myself bobbing around in the Pacific in that condition, so we splurged and bought a back up unit. I'll be traveling with 2 Herkimers--one in his rolling cart and one in my carry-on bag. 

Also in the bag, which measures the required 20X14X9 inches, I've packed my bi-pap machine (whom I lovingly call Morpheus!) which gets me through the night, all its tubing and plugs, extra batteries, charger and electric cables, extra cannulas, my prescription meds (for 30 days, let me tell you that's a prodigious amount of pills!), a pair of jammies, 2 changes of undies, and socks. My toothbrush, make-up and other toiletries will have to travel in my DH's carry on.   

I used to say there were two classes of travel: First Class and With Children. Now I'll add a third: With Medical Equipment

But it's all good. Once we unpack on the ship, it'll be like being at home. Holland America has already promised to have distilled water waiting for me in our cabin to use in Morpheus. Only getting to the pier from the Midwest with all our stuff in tow will be a challenge.

These devices, which some might think would weigh me down, actually give me freedom. I'm so thankful to be living now when my lung condition can be stabilized with drugs, when, between Herkimer and Morpheus, I have high enough O2 sats to feel like having a few adventures.

And I'm beyond grateful to celebrate 40 years of marriage with my Dear Husband on this exciting trip.

If you'd like to armchair travel with me, please visit The Coldwater Gazette, my author blog, and sign up to follow it by email. You'll find the form for you to type in your email in the right-hand column under my picture. I'll be posting photos, sharing our experiences, and wishing you were here.

Hope to see you there! 

Prednisone Wars

Since 2010, I've been taking corticosteroids on a daily basis. When I was first prescribed it in massive amounts, it was like a miracle. My cough disappeared. My breathing was like normal. Yes, I had to monitor every bite of food I put in my mouth, but I experienced an amazing turn around in the symptoms of my disease.

But prednisone is not without risks so I understand why my docs want to wean me off it. Especially since I'm on CellCept, which is supposed to allow me to get off prednisone completely.

My body, however, has other plans.

After six years of dependence on it, my adrenal gland is thoroughly out to lunch. I'm not producing any corticosteroids on my own. And even if I step down as little as 1 mg a day and hold that new level for weeks, my lung function deteriorates.

Granted, I have not had any objective testing, but just based on how I'm able to go about my day, I notice a difference immediately. It may not seem like much to you, but being able to walk slowly around my own home or to stand long enough to prepare a meal for my family without being tethered to Herkimer (my Portable Oxygen Concentrator) is a win for me. If I drop below 10 mg. a day of prednisone, I can't do these simple things.

Sometimes I feel as if I'm snorkling through life...waiting to surface for the next puff of O2 from Herkimer. Don't get me wrong. I love my POC. He's my world-expander, my freedom to still have adventures. But I dearly love to go without him when I can.

When I last spoke with my doc at Mayo, he said finding the prednisone "sweet spot" was more art than science. After nearly five months of miserable tinkering, during which I hit my lowest level at 3 mg a day, I've come to believe that I was already at my sweet spot before we started this fiasco. At 3 mg, it took me 45 minutes to walk a mile on my treadmill. At 10mg, I can do 2 miles in about 55 minutes.

So I'm holding steady at 10 mg.

Since an average healthy person's adrenal glands produce between 7 and 10 mg. of cortisol (the natural substance prednisone replaces) each day, I'm simply on the high side of normal. It's times like these when I remind myself that doctors are only "practicing" medicine. While I am grateful for their guidance and expertise, I'm the one who ultimately decides how to manage my symptoms.

I choose to be more active. I choose to push back against this disease, to feel normal as long as I can. I choose not to give NSIP an inch without a fight.

When you're dealing with a chronic progressive disease, war is the only option.  

"Time to start using the good china..."

When my uncle turned 65, he said it was time to start using the good china. By that, he meant there was no point in saving things "for good." He'd realized that life was meant to be enjoyed NOW.

In that spirit, my DH and I are embarking on a wonderful adventure this spring. We're celebrating 40 years of marriage with a month long cruise to the South Pacific! We'll be visiting Hawaii, Fanning Island, Rarotonga, Society Island, Bora Bora, Tahiti, Moorea & Nuku Kiva--lovely little dots of green in the wide blue sea. It'll be the trip of a lifetime.

When we told a few people about our plans, someone said to me, "Oh, good thing you're going now while you still can."

The words stung, but it was the truth. Having a chronic, progressive health issue is something I try to sweep under the psychological rug, but every now and then it smacks me in the face. Even though I must have supplemental oxygen to get through my day and a bi-pap to help me through the night, these may indeed be my "good, old days." I'm still able to walk a couple of miles a day on the treadmill, still feeling up to travel, still ready for a new adventure.

I may not always be.

Years ago, a dear friend of mine was diagnosed with liver cancer. His doctor told him to do everything he wanted to do that summer. At the time, I thought it was good advice for everyone. None of us know how many trips around the sun we're going to get. If there's something you've been putting off, maybe it's time to dust off that dream and see if you can make it happen.

Now.

While you can still enjoy it.

If you'd like to armchair travel with me, I invite you to sign up to follow my author blog where I'll be posting news from the high seas in a few months.  You'll receive my posts via email so you'll never miss a moment of our adventure.

What "good china" experience would you like to give yourself?