A Christmas Gift

I'm singing O Holy Night for Christmas Eve service.

In the past, this wouldn't be an unusual thing. I'm a classically trained soprano who debuted with the Denver Symphony and then went on to sing with a number of regional opera companies before I left the stage to raise a family. Even then, I kept active in church and community groups, singing the role of the mother in Amahl and the Night Visitors several times and soloing for productions of The Messiah. My Christmases have always been filled with music.

Until I was diagnosed with NSIP.

For a while as we struggled to find the right combination of drugs to keep the progression of this illness at bay, I suffered a cough so virulent and persistent, my vocal chords were constantly inflamed. I couldn't match pitch, let alone produce a remotely pleasing tone.

It was like losing a limb. Singing is so much of who I am, it was like part of my soul had been stripped away. I couldn't allow myself to weep over it for fear I'd never stop. Like many things in life when you have a chronic health issue, I finally concluded it was something I'd have to learn to live with.

Or in this case, without.

But I've been given a reprieve--a gift of grace. Since moving to the Midwest, the cough is almost gone. My lung function is stable or slightly improved. And I've been singing again.

Not at my previous level of ability, goodness knows, but well enough so that I feel that joyous connection between my breath and my body and my spirit. And I'm so very grateful.

So even though some folks who listen to me sing tonight will think the music is my gift to the Savior, it's not.

It's His gift to me.

One Step Forward, Two Steps Back

At the end of September, I got a glowing report from my doctor at Mayo Clinic. All the lung function tests showed that I was either stable or slightly improved. With a fibrotic lung disease, this is cause for high 5's all around.

I'm mostly switched over to mycophenolate (the same drug they give transplant patients to suppress their immune systems) to help control the progression of NSIP. But I was still taking 10 mg of prednisone a day as well.

For those of you who are unfamiliar with this corticosteroid, it's sort of a wonder drug. It stops inflammation, which means I don't have much joint pain, and it really makes a difference in how my lungs function.

It's also a two-edged sword. Long term use (I've been on it since 2010) can lead to osteoporosis, dangerously high blood pressure and cholesterol levels, cataracts, weight gain (preach!), diabetes and psychosis. (The DH has been watching me closely for that last one, but I've managed to convince him I was born this way! Ha.)

But breathing is all it's cracked up to be, so I'll make this trade all day long. However, my doc wanted me to taper off and discontinue using prednisone altogether.

OK. Any time you can take one less pill is a win in my book. So as soon as we got home on Oct. 1st, I dropped to 5 mg for a week, per the doctor's orders. Then I dropped to 4, then 3, then 2. Things were getting kind of squirrelly by then, so I did a week where I alternated between 2 one day and 1 the next.  On Sunday, I began taking just one each day.

I was coughing a lot, something I'd done very little of before beginning this decrease in prednisone. I could no longer move about the house without my oxygen concentrator in tow.  I usually walk 1-2 miles five or six times a week on the treadmill. Using supplemental oxygen, I could do 2 miles in 61 minutes.

I know, I know. Not exactly tearing up the track, but I have to maintain at least 92% O2 saturation while keeping my heart rate under 110. Still, it was getting me moving and convincing me I could still get out and not totally be a tortoise. Yesterday it took me 45 minutes to go just one mile.

I am clearly losing ground.

So I sent an email to my doc explaining my symptoms and asking if I could go back to 10 mg of prednisone a day for a week or so. Then, if my function has returned to Sept. 30th levels, I could start tapering again, but this time stepping down more gradually, say 1 mg at a time and remaining at each new level for a couple of weeks before moving down to the next.

My doctor was out of the office this week, but the head of the pulmonary department called me in her place. After questioning me about my symptoms, he agreed with my plan.

"We like to think medicine is a science, but it's really an art. Everyone's body is different. We must try to find out what works best for you," he said. He went on to say that while they'd like to see me off it completely, what we need to do is find the lowest dosage at which my symptoms are managed through a little trial and error.

Guess that's why they call it "practicing" medicine.

Yay! I listened to my body and the head of pulmonology at Mayo Clinic listened to ME!

So the moral of this tale is, if something isn't working for you, do not suffer in silence. Take the reins and try (with your doctor's advice, of course) to find out how you can improve your situation. I'm a pragmatist about this stuff. Whatever works.

And while I put great stock in my doctors, my ultimate hope is in God. Prayer changes things, if nothing more than my attitude. I'd sincerely appreciate your prayers and would be honored to lift you up in mine.

I'll let you know how my search for the prednisone "sweet spot" goes.

***

Do you have or does someone you love have a chronic condition? Need someone to talk to about it? Feel free to share how you feel about your health issues here. Life is beautiful, but admittedly, some days are better than others. Are you having a good day or one of those "also ran's?"

Minor Catastrophe

Herkimer has died.

In case you missed my earlier posts, let me explain that Herkimer is my portable oxygen concentrator. I don't know what happened to him. He hasn't been dropped. He hasn't gotten wet. I'm religious about changing his filter and keeping his batteries charged. In short, I treat him like my third child.

But yesterday evening when I turned him on to head out to visit my parents, he huffed and he puffed but he put out no little bolas of O2 at all. His parting shot was a cryptic message on his little green screen.

O2 DELIVERY ERROR

Well,duh!

Fortunately, since I've been walking on the treadmill lately, I've seen an improvement in my lung function so that I can move around the house (with all the vivacity of a three-toed sloth, mind you!) without using supplemental O2. I have to be careful not to overdo or my O2 sats fall below 90, but at least I can function on a minimal level without a POC.

But only for a while. I've got a couple of reunions to attend over the next two weekends. I have to be mobile.

If I discontinue exercising, my lung function will probably deteriorate too. So, I called my O2 provider. They are over-nighting a replacement unit. This will be Herkimer the Third.

It makes me nervous not to have any back up except my own sub-par functioning lungs. I've resisted getting a second unit. They're so darned expensive, but I may have to reconsider. Without a POC, my world suddenly becomes very small.

So looks like I'll be biting that particular bullet. After all, what price can you put on mobility?

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. 

The Little House that Couldn't

I have a lot of fun at the expense of tiny house aficianados, but the truth is, I'm weirdly fascinated by them. The idea of simplifying how I live makes sense to me--especially for short amounts of time. Tiny houses work best as vacation homes, or better yet, as a vacation home on wheels.

So the DH and I started looking at motorhomes. Since he retired in January, we've done a good bit of traveling--a Caribbean cruise in January, Corpus Christi in June, Rapid City,SD and NYC in July. In September, we have a couple of family reunion weekends and a trip back up to the Mayo Clinic for me to check in with my pulmonologist. A nice Class A motorhome started making a lot of sense.

And after a brief search, we found one we really liked!

It's a 2007 Itasca Sunova 29 ft. with under 27000 miles on it. The unit was very clean with plenty of storage and with 2 slides, it was a tidy, livable space. There was a strategically placed outlet for my Bi-pap at night. The idea of having a generator we could use if our main house ever lost power for an extended time was enticing. We were excited and began to make buying noises.

Until we closed it up, started the generator and began running the AC for a test drive. As we lumbered down the road, I began to feel fuzzy-headed. It became difficult for me to finish my sentences. Unfortunately, I wasn't clear enough to even get out my oximeter to see where my O2 sats were, but I knew enough to know something was decidedly not right. Then after we left the dealership without sealing the deal, the fog that had descended on my brain began to fade.

When we got home, I googled "air quality in motorhomes" and discovered that I wasn't imagining it. Some of the materials used in RVs tend to "out-gas." They might not cause issues for most people but can be very debilitating for those with lung conditions. Formaldehyde is a common culprit. I also wondered if the generator was giving off more than power.  

So the dream of hitting the open road and camping in all the national parks is gone, but we still feel as if we dodged a bullet. Imagine how awful it would have been if we'd spent $40K and then discovered the unit made me loopy.

A mind really is a terrible thing to waste.

Me & the Big Apple!

I flew to NYC recently. This was my first flight in over a year. Traveling by air is still possible when you have a chronic lung condition and use supplemental O2 by day and a bi-pap machine by night. But it requires some extra planning.

Before you fly, you must notify your airline that you intend to bring a Portable Oxygen Concentrator on board. O2 cannisters are NOT allowed for safety reasons. If you don't normally use a POC, you can rent one for the duration of your travel. Your carrier will require you to fill out a form detailing the type of device you use and you must have your doctor sign off on whether you are able to travel. It's a good idea to have a copy of your prescription for O2 as well. You must also carry enough back up batteries to cover 1 1/2 times the expected time of travel. 

"Herkimer" (my pet name for my POC) counts as my personal item. He is, for airline purposes, my purse. I keep a slim wallet holding my ID & other cards, my glasses case, pill minder and cellphone in his small pocket. My other essentials had to go in my carry-on. 

Do NOT try to push the envelope beyond the standard 22" X 14" X 9" bag. If you're flying, check on the size of the plane. Some regional jets require passengers to "gate check" their bags. I was able to keep mine with me because I had to have access to spare batteries if I needed them. But I was only allowed to take my rollerboard on because it squeezed into the space under the seat in front of my husband. It would not fit into the overhead bin.

The good news it that my bi-pap (whom I affectionately call "Morpheus") and all his tubes, plugs and headgear fit snugly into the rollerbag with space for my portable oxygen concentrator's extra batteries, cannulas, and plugs as well. The bad news is that only other things I was able to pack in my carry-on was a very small make-up & toiletries kit, a couple pairs of underwear, PJ's and one change of clothing.

If Delta had lost my checked bag, it would have been a l-o-o-o-n-g week.

I was in NYC for the RWA (Romance Writers of America) National Conference, but because I was a late signing up, I was unable to stay in the conference hotel. We were at the W, a hotel around the corner on Times Square.


It's a super trendy, modern hotel. The entrance was flanked by two of these fern-head sculptures and the lobby ceiling was glass with water flowing above it in swirling jets.

Unfortunately, the hotel was undergoing renovations, so I was bucking some pretty serious construction dust at times. The next time I book a hotel room. I will ask if they are doing renovations before I commit to staying there.  Also I needed to be sure I took a deep breath before the super-fast elevator to the 49th floor shot upward. Poor little "Herkimer" shut down as the pressure changed so quickly. Fortunately, he righted himself once I got out of the elevator and started sending me those much needed puffs of O2.

Then a week after we got home, news of the Legionaires outbreak in the Bronx hit the news. I won't lie. I was a little freaked out about it. Of course, I was in the Times Square area most of the time, nowhere near the Bronx. But still...the same conditions with infected cooling towers that led to several deaths might well exist in Manhattan.

But I can't live my life being afraid of every germ out there. I'll never leave the house if I succumb to that. Even though my immune system is compromised, I can't go into hiding. I'm determined to live as normal a life as I can, for as long as I can.

And that means saying yes to adventure whenever it presents itself.  

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?