These are the Good Old Days!

from Lexi Eddings... 

I'm dating myself a bit here, but I remember hearing Carly Simon singing "These are the good old days" when I was a kid. At the time, I wondered what she meant.

Now I know.

It means we need to be aware of our blessings and thankful for today. For me, that means being glad that I can still walk on the treadmill, to be grateful to live at a time when I have the right meds to help keep my condition stable and to bless God for "Herkimer," my faithful oxygen concentrator. That little machine on wheels keeps my world from collapsing on itself.

And speaking of my world, I'm about to see a whole lot more of it. Last week--and I'm still trying to wrap my head around this--my DH and I booked a world cruise. I kid you not. We're going all the way around the earth.

We've been toying with the idea for a while, especially since I did well on our 30 day cruise to Tahiti last year. But we didn't think we'd be able to do a world cruise till about 2021.

That didn't stop me from dreaming. And planning. And lurking on cruise line websites, comparing itineraries, prices, number of days...

Then when Princess had a sudden drop in their fares, we decided to not to wait any more.

We had to do some fancy financial footwork, but this is the right time to go for lots of reasons:

1. We got a great price on our fares.
2. We have the money to pay for it now. (I heard one horror story about a couple who MORTGAGED THEIR HOUSE to pay for a world cruise. They'd never even been on a 7 day voyage before and they were miserable the whole time. So sad...)
3. My parents are in excellent health, our grown children well and employed, and the dogs are both fine and will be well cared for by one of our daughters.
4. Probably the most compelling reason to go now is that my NSIP seems to be stable.  

My lung function was the same or slightly better the last time I was tested at Mayo Clinic. With supplemental O2, I'm able to walk a mile on the treadmill in less than 30 minutes. When I'm at home, I can often move slowly around the house to cook, do laundry, etc without needing Herkimer. If I'm seated, my O2 sats are in the high 90's just like everybody else.

But NSIP is considered a progressive condition with a life expectancy of 5-13 years after diagnosis.

I'm on year 7.

Now, don't feel sorry for me. I'm not. I live a blessed life and I know it. Besides, I fully intend on breaking through that 13 year statistic and skewing the curve all to pieces, but the truth is now is all any of us have. And I'm determined to keep my now as active and adventurous as I can for as long as I can.

When I was in my twenties, my DH had to take a business trip to Honolulu. Of course, I tagged along. We visited the Polynesian Cultural Center and snorkeled in lovely Hanuama Bay. When I rode the public bus all over Honolulu, the locals on the seat beside me were happy to point out the sights--like their uncle's house or where they went to church. I learned to surf at Waikiki.

And while 20-something me was having a ball on the beach, I happened to see a couple at the edge of the sand. She was in a wheel chair and he was wearing an oxygen cannula as he pushed her along. I felt so sad for them. To be in such a beautiful place and not to be able to do all the things my young healthy body could do struck me as almost cruel.

I think about it a little differently now. Even with their obvious health challenges, they were still on the beach. They were still going, albeit much slower. They were still exploring, still venturing out of their comfort zone to see what's out there.

That nameless couple are kind of my heroes.

Next January, when I feel the sands of Waikiki between my toes again, I'll be thinking of them.

If you'd like to hop in my pocket and join me on this epic journey, please pop over to RoundTheWorldWriter.   If you sign up to follow by email, my posts will come directly to your inbox. Let's see the world together! 

  

Joyful noise

from Lexi Eddings...

When I visited my pulmonary therapist, she gave me lots of suggestions for increasing my lung function. Regular walking on a treadmill was highly recommended, as long as I monitor my O2 sats and heart rate. I have to hit the sweet spot of staying at 92% or above on O2 and not letting my heart rate go higher than 110 bpm. This keeps me chugging along at about 2 mph.

Another suggestion was that I learn to play the harmonica.

I stifled a laugh, but she was serious. Apparently, harmonica playing encourages deep inhalation and controlled exhalation.

I peck at the piano and can play about three chords on a ukelele, but I've never been an instrumentalist at heart. No disrespect to anyone who loves harmonica music. It's just not my cup of tea. The cluster of tones it emits grates on my single-note-craving ears.

I'm a singer--a classically trained soprano. So I asked my therapist about singing.

"Oh, yes," she gushed. "That's just as useful as playing the harmonica."

I've been singing all my life. When I sing, I feel more connected to myself. My body and my spirit align and I'm more thrillingly alive than just about any other time. While I love it, I've never considered it "useful."

So now I sing "usefully" in both my church and community choirs. It's wonderful that something I love to do actually helps improve not only my quality of life, but the quality of my lung function as well!

Do you have a hobby that promotes your well-being?

Feeling a Little Prepper-ish

from Lexi Eddings...

Let me start by saying that I do not own a tin foil hat. I don't think the sky is falling. And I generally pooh-pooh every conspiracy theory I hear.

But I do have a stash of essentials on hand in case of emergencies. Usually, I'm a little embarrassed about it--my full-to-bursting pantry, the many gallons of bottled water I keep stacked in my laundry room, and the extra batteries, enough TP for a year (or so my DH claims!), and go-bags packed for each of us. We also try to keep the top half of our cars' tanks full.

Writing it out like this, it does sound a little paranoid, doesn't it? However, when a "five hundred year flood" (Check my author blog for more about that!) ripped through our town recently, I never felt smarter about my preparedness.

And one of the smartest preps is in my medicine chest.

If, like me, you take a number of maintenance meds to keep you going, you simply must have a stash. I know your insurance company will likely only allow you to refill once every thirty days, but I recommend having three to six months worth of each prescription you take on hand. If you think I'm being a nervous Nellie, consider this scenario.

For a week after the flood, major highways in and out of our town were closed down due to bridges being washed out or standing high water. Most grocery stores have only about three days worth of food on their shelves. Ditto for pharmacies. Outages were rampant.

Now imagine you were due to refill your blood pressure meds on the day of the flood but didn't get it done. You might not be able to get more pills for a week or more. Try to stay calm. A stroke will ruin your whole day.

But if you have a few months worth of your meds laid by, you're golden.

So how do you do that? Here are a few strategies I've used:

1. Refill prescriptions as early as you can. I used to be able to do it about a week ahead each month. At this rate, I'd have an extra month's worth squirreled away every four months. In a year, I had three extra months stored. Now, my particular insurance plan will only allow them to be refilled three days early. Even at that snail's pace, you can still get a month ahead in a year's time.
2. Ask your doctor for 90 day prescriptions. If it's a maintenance medication, he or she will usually agree. When you pick it up, ask your pharmacist to check on when you can refill. I've got a really helpful one who's been happy to find this out for me. Then follow step 1, and refill as early as you can.
3. Pay out of pocket. Skip the insurance altogether. Walmart offers $4.00 prescriptions on a host of drugs. See if their list can save you money over your co-pay.
4. Check the discount sites. Got a spendy drug on your list? Me too. More than one, in fact. It's like buying a new refrigerator every month, but I've had good luck with both GoodRX.com and BlinkHealth.com. 
5. Do NOT, I beg you, buy your meds from an online or overseas pharmacy. The prices may look appealing, but you have no guarantee you're actually getting the medicine you need.

  
Of course, once you've built up your medicine chest, you need to keep an eye on the date the med was issued and use the older ones first. Most drugs are still effective a year after that date. It may drop if you keep them longer than that. Six months worth is the most I have in my arsenal.

Warning! Antibiotics can go bad! If you are given a script for some, you should use them up, but if you have left overs (which you shouldn't) do NOT be tempted to use them later.   

Now go make yourself a tin foil hat and start accumulating a little stockpile of your much needed meds! Don't forget OTC pain relievers, cold medications and general first aid stuff.

You'll thank me when the water starts rising...