Wednesday, September 16, 2015

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?

Saturday, September 12, 2015

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.