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

Whiners Need Not Apply

People who fuss constantly irritate the poo-waddin out of me. I think it started when I was in labor with my first child and had to listen to the woman in the next room yelling her head off while I gritted my teeth and did my Lamaze breathing.

Suck it up already I wanted to tell her, but I was too busy trying to control my urge to join her in the scream-fest.

From that time on, I've had very little tolerance for whiners. Imagine how much more I hate it when I catch myself doing it.

When you're dealing with a chronic illness, it's an easy habit to fall into. After all,

• I can't take a walk at a normal pace for longer than a couple of minutes without supplemental oxygen. 
• Preparing a meal or doing normal stuff around the house requires me to move at a snail's pace unless I want to hook up to "Herkimer" (my portable oxygen concentrator). 
• I take 7 different prescription drugs and a handful of supplements every day just to keep from losing ground to the disease that has attacked my lungs. 
• I sleep hooked up to all the tubes and headgear that come with my Bi-pap machine. (Real sexy, huh?) 
• Whether I feel like it or not, I force myself onto the treadmill for at least a mile each day to help hold NSIP at bay. (On a positive note, it is helping! My lung function seems better after I walk.) 
• I'm see lots of people who are older/ have been chronic smokers/ don't exercise, and don't have a problem breathing like I do. It's such a simple thing. Why is it such a challenge for me? 

But when I'm tempted to whine or wonder "why me?" I have to ask myself: Who does it help when I feel sorry for myself?

Not me, certainly. When I wallow, I tend to go deeper the longer I allow the pity party to continue. I'm better off to nip the whine in the bud.

Not my loved ones. It's hard enough for them to watch me deal with this. My negative attitude will make them feel even more powerless. 

One of the tough things about a chronic illness is that your range of choices tends to diminish. There are some things I cannot do anymore, and will never do again. 

But one choice that remains to me is to manage my own attitude. I'm doing all I can to control the progression of  the disease, but in the end, that's in the hands of God. The only thing I can truly control is how I choose to feel about it. I can feed feelings of gratitude and optimism, or I can encourage my inner cry-baby to pop out. 

Yes, there are some things that are worth crying about. But once I've done that, where do I go?  I guess I've reached the point of surrendered expectations. I will continue to do all I can to manage my condition and view every day as a gift. I can't waste a one.

How will I use these precious days? When you boil life down to its essence, the time we spend investing in others, in getting to know God, those are the things that are lasting. Instead of counting my days, I mean to make my days count. 

Hope this helps someone else. Just venting here has helped me. 

Traveling with my breathing gear

When I was in high school, my English teacher invited us to write a letter to our older selves. We were encouraged to share our dreams. One of mine was to travel. I wanted to see the world.

Fortunately, I married the Norwegian Hunk who went to work for an airline and we made good use of those "golden handcuffs." That's what travel industry folk call flight benefits. Our kids had passports by the time they were 8 and 6 and we took trips we couldn't have afforded without those special benefits. I've seen a good bit of Europe and Japan, and closer to home, I've visited 49 out of the 50 states. (Look out, Louisiana, I'm coming for you!)

But that was before I had so much mechanical stuff to drag along to support my breathing. I need to pack Herkimer (my portable oxygen concentrator) along with his electrical cords, extra batteries, charger, spare filters, backpack to use instead of the wheeled cart for when I'm expecting uneven ground and extra cannulas, My POC has its own suitcase!

But I still love to travel and it worked out ok last January when the Norwegian Hunk and I decided to celebrate his retirement from Google with a two week Caribbean cruise. We drove from the Midwest down to Tampa to catch the boat, so I wasn't constrained by airline luggage rules.

However, another device has been added to my regimen--a bi-pap machine at night. Evidently I was holding my breath more than 100 times a night. Not good. So I have the company of Herkimer when I'm active by day and I'm attached to "Morpheus" on my bedside table by night.

I hated it at first. It was like drowning in air. But a body can get used to anything they say, and  I can honestly report now that I feel the benefits of the additional therapy. However, Morpheus has its own set of stuff--cords, tubes, distilled water--I need to waggle along when I travel.

Next week, we're planning a trip to Corpus Christi to visit one of my sisters and her family. Since it's a driving trip, I'm not worried about fitting everything in, but in July, we'll be flying to NYC for the RWA National Conference. I'm going to have to do some creative packing for that.

Any suggestions?