Several times while doing my daily activities I have had people ask me, “Are you alright?” I wonder, what is it that makes them say this. Is it my breathing, or do I have what some refer to as “bitchy resting face,” and as I’m concentrating this face comes up? I have to ask the next time someone says something. I have a smile game that I play when walking or going to the grocery store I like to smile at people and see how many people I can get who will smile back at me. If you have a granddaughter in tow, it is a bit easier, but I love this game. Maybe I need to play it more often.
I do notice, as I just went to get the trash can without oxygen, that these last few days, I’m winded a lot. I’m so much better than during and after pneumonia. Back then I could not walk back and forth from my studio. It is only 40′. I “temporarily” moved my office from the second floor to in my home, which has made a mess of what little filing I could do. I have made accommodations to my lifestyle.
I bring my tank everywhere, though I only use it if I am walking with others, walking a distance, or walking at a faster pace. There is no reason for me not to use it if it gives me some energy. I need oxygen to stay active. I also have an oximeter, a little probe I put on my finger that tells me my heart beat and oxygen level. I stopped using it for a while. One doctor told me not to use it at all. He says pulmonary patients used it too much. I don’t know. Sometimes I use it when I’m frightened. If I use it and I see the levels are not as low as I expected them to be, it gives me some peace. If they are low, then I reach for the oxygen.
Though the good thing about the tank is that it is quiet. Because it is not running plugged in, there is no distraction. However, the tanks are a pain in the ass. Sorry for my french, but it is a catch twenty-two. You carry this heavy tank to get oxygen, but you need the tank because you are hauling an extra however many pounds with you. My small tanks which I keep in an old camelback left over from my days of hiking and biking are approximately 16 inches tall and about 4 inches in diameter. I have a bigger one just in case the electricity goes out. My small tanks weigh about 8 lbs, and they are usually accompanied in my backpack by a carafe of hot water. I keep the water nearby because I cough a lot and the hot water helps. The pack is heavy. Tanks also don’t last. If I go somewhere for a long period of time where I know I will need extra oxygen I will have to take extra tanks, and often arrange my schedule and activities so that I’m not away from air. I hope if this post does anything it help everyone who reads it to appreciate that they can breathe air for free, anytime they wish.
I would give anything to have an innogen G3 or G4 portable oxygen concentrator. With this, I could go away. I could go camping, while I still have the energy to do that. It occurred to me that if the disease progresses quickly this could be my last year of freedom to go camping. I might not have energy enough to do things like that. As it is today, when I consider traveling and camping I have to say, I wonder what the altitude is there? If I had a portable oxygen concentrator I could fly in an airplane. If I own one, no one could ever take my oxygen away, if God forbid, there is a problem with insurance or paying for oxygen. I feel the ownership would give me freedom. If there is a power outage, I could use the portable elsewhere or charge it up and use it.
How quickly I have become obsessed with air.
I mentioned my desire for a portable oxygen concentrator in the support group, and they said to set up a Go Fund Me, but as you know I’m doing this blog anonymously so that would be hard. They suggested someone set one up for me. They said they did that when they wanted to try stem cell. ( FYI- they had a transplant, so I suppose the stem cell did not work for them. ) An innogen G3 portable oxygen concentrator costs about $2,295. Add support, and an extra long life battery and the cost is closer to $3,000. That is not in my budget, not with doctors visits and co-pays and tests. I keep hoping. I keep visualizing an innogen G3 sitting in someone’s closet left over from caregiving for a loved one that will some how come to me.
If you see me, you will notice that my breath is shallow. Many things influence my breath- the clothes I wear, the seat I am sitting in, my posture as I’m sitting, and how much food I have eaten. Still I’m so excited that I feel well, even with these limitations. I’m working and so thankful.
This entire post reminds me that I’m often breathless, but I’m alright, thanks for asking. Sometimes I need to stop and rest, up the oxygen or change positions.
It reminds me of a joke I hear in my head. One pulmonologist asked me a bunch of questions from, “Do you raise alpacas to do you sleep with feather pillows.”
Then the question that has me giggling.
“Are you breathless during sex?”
I can only think if you are not breathless during sex, is it worth it?
Right now, I’m o.k. Thanks for asking.
Psuche
HINT: Along with my camel back, oxygen, and water bottle I have purchased some alcohol wipes and keep the small packets in a pocket. You never know when the nose cannula will touch the ground or another service. I try to be careful. I also have some hand disinfectant clipped to this bag.
The Osprey Verv 5 camel back is a bit pricey, but I love it. It is big enough for the tank, a small purse, my water bottle and other things.I have a bigger back pack when I need to carry more things. But more than it being a good size it has a chest strap and a waist strap. This allows me to hike or do long walks without the pain of the shoulder straps. There are some options in carrying it. I kind of also like the fact that sporting this camel back I feel less like a patient or sick person and more like I’m active and on the go. I plan on staying that way or doing that as long as I can.
Psuche