The Beast Within… (repost)

Living On Oxygen for Life – a repost from 2016 because this is so important to read if you are dealing with anxiety and control issues.

Over the past 10 years or so, this beast inside me has grown and mirrored the decline of my health. It all started with what I thought was constant worrying. You know… when you have to time how much your oxygen will last? Well, that can make you worry about checking your oxygen tank a LOT when you are out having fun. Then I would worry about how long my energy will last while I was out having fun. Can I walk that far in the mall or in the hospital for doctor appointments? Will K get upset if I need to stop to sit down for a few minutes. I know the last one is kind of an irrational worry. Of course K wouldn’t get upset but he did try to push me to walk a little further before stopping which only made me feel like he wasn’t taking my need to stop seriously. My health wasn’t as progressed as it is now. So, pushing me a little bit further was a good thing that K was doing. It’s just when I was tired and felt like I needed a break, no knows how I felt except me.

I turned all this worrying about so many things in my life into trying to control everything around me. I felt like I needed to manage everything so that I had enough energy for things that I had to do around the house and the things that I wanted to do with K. I wanted to know where we were going when we were out of the house, what route we were going, and even how K drove. I needed advanced warning when K wanted us to go out to have fun so that I can be sure to rest up during the day. But all that wasn’t working. Trying to control everything turned into Anxiety because there is no way that I could control everything, be happy and not irritate those around me.

It’s taking a long time to learn to let go of the control issues. K reminds me by saying that he “Gets it.” and “I will always take care of you. I always have your best interest as my priority.” It has helped me a lot with him saying this to me. I have to remind myself of what he said over and over because my memory doesn’t retain information as well as it use to. So, when I get into my vehicle with K, I will remind myself that he has my six. *wink* Giving up the control and learning to trust is a very hard thing to do for me because I feel as if I’m losing more of my independence. However, as long as we have fun in our lives, all will be ok.

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The Beast Within…

Living On Oxygen for Life

Over the past 10 years or so, this beast inside me has grown and mirrored the decline of my health. It all started with what I thought was constant worrying. You know… when you have to time how much your oxygen will last? Well, that can make you worry about checking your oxygen tank a LOT when you are out having fun. Then I would worry about how long my energy will last while I was out having fun. Can I walk that far in the mall or in the hospital for doctor appointments? Will K get upset if I need to stop to sit down for a few minutes. I know the last one is kind of an irrational worry. Of course K wouldn’t get upset but he did try to push me to walk a little further before stopping which only made me feel like he wasn’t taking my need to stop seriously. My health wasn’t as progressed as it is now. So, pushing me a little bit further was a good thing that K was doing. It’s just when I was tired and felt like I needed a break, no knows how I felt except me.

I turned all this worrying about so many things in my life into trying to control everything around me. I felt like I needed to manage everything so that I had enough energy for things that I had to do around the house and the things that I wanted to do with K. I wanted to know where we were going when we were out of the house, what route we were going, and even how K drove. I needed advanced warning when K wanted us to go out to have fun so that I can be sure to rest up during the day. But all that wasn’t working. Trying to control everything turned into Anxiety because there is no way that I could control everything, be happy and not irritate those around me.

It’s taking a long time to learn to let go of the control issues. K reminds me by saying that he “Gets it.” and “I will always take care of you. I always have your best interest as my priority.” It has helped me a lot with him saying this to me. I have to remind myself of what he said over and over because my memory doesn’t retain information as well as it use to. So, when I get into my vehicle with K, I will remind myself that he has my six. *wink* Giving up the control and learning to trust is a very hard thing to do for me because I feel as if I’m losing more of my independence. However, as long as we have fun in our lives, all will be ok.

Chicken what???

Living On Oxygen for Life

Though I am 45 years old now, I grew up with two sisters who are healthy but had the misfortune of coming down with Chickenpox as children. That’s right… they had chickenpox and I somehow was spared the dreaded virus when my sisters had it. I wasn’t allowed in the bedroom they had to stay in together but I did talk to them from doorway when my mom wasn’t watching. Shhh!! Don’t tell!

Chickenpox is pretty contagious. For some reason my mother thought that I must have caught a really mild case of chickenpox when my sisters had it. I never really thought that I actually had chickenpox but maybe I had, as child, developed some antibodies to protect me from the chickenpox. I mean, since I was around my sisters or at least I was in the house too.

Now that I’m an adult and my mom kept thinking that I probably had a super mild case as a kid, deep down I still thought I didn’t. I was careful over the years when there were rumors of someone, within my vicinity, coming down with chickenpox. Having the chickenpox as an adult is much worse than having it as a kid. Couple that with being a respiratory and cardiac patient while having the chickenpox as an adult… well, it’s a recipe for trouble.

After hearing about a vaccine for the chickenpox in 1995 on the news a few months ago, I started wondering… Do I REALLY have antibodies for chickenpox? I thought it was time to find out for sure.

So, during my last appointment with my Primary Care physician, I asked him how likely was I to have been exposed to Chickenpox but never developed the virus to have chickenpox antibodies in me already? Hey, it was a good question, right? He said it was likely that I had antibodies. But we weren’t really sure. I wanted to get the vaccine but if I already had antibodies for the chickenpox, then I didn’t need it. The only way to know for sure was for me to get lab work done for Vericella. I told my doctor that I’m pretty sure I didnt have the antibodies and he bet me that I did. I said, “Ok, I’ll bet you some ice cream that I don’t have them.” Guess who won? I wonder if he’ll get me some ice cream.

I went today to get my first of two shots. The second will be in a month. It’s a live dose which makes me nervous. I’ve never been given a live dose of anything before…. that I know of. So wish me luck! You can read all about Vericella (chickenpox) from the CDC website.

Have a great week everyone. It was nearly 80 degrees today and I really feel for the people who live in the NorthEastern coastal states. What a blizzard!!! Stay warm! Follow my blog so you don’t miss anything! *hugs*

What’s an Oxygen Concentrator??

Living On Oxygen for Life

I am about to explain the basics of an oxygen concentrator for all of you who are confused about this machine. (click on the pictures to see a bigger view) First, let me mention that there are different types of machines or forms of oxygen. There is an oxygen concentrator (what I’m about to show you), there is compressed oxygen that comes in a metal cylinder, liquid oxygen which is pressurized and contained in a metal reservoir, and then there are battery powered oxygen concentrators which are mainly used for portable use. I hope with this list, I didn’t confuse you.

In the pictures below is a Respironics Oxygen Concentrator. It provides up to 5 Liters per Minute of oxygen to a patient. You can see that I do not use a white humidifier bottle with this machine. A humidifier bottle contains distilled water which the oxygen flows through a little tube and bubbles up through the water which hydrates the oxygen that you receive. However, I connect my oxygen tubing straight to the machine. It’s recommended to use the humidifier when using oxygen at a higher flow, such as what I do (6LPM).

An oxygen concentrator is an electrical machine that plugs into a electrical wall outlet. When you turn on the machine, it intakes room air through a filtered vent. It filters the room air through it’s sieve beds, separating everything from the oxygen; which is then flowed out to you through the oxygen tubing connected to the machine. All the other “air” is expelled through another vent usually located at the bottom of the machine. You can feel it. It’s the warm air coming out of the machine.

Respironics Oxygen Concentrator

Respironics Oxygen Concentrator

It’s VERY important to NOT block the vent that expels the air from the vent. The Oxygen Concentrator should be located in a central area of your home allowing you to reach everywhere you want to go. Also, do NOT enclose the machine in a small room like a bathroom or a bedroom. This machine needs air and ventilation to keep it cool and functioning properly.

The next important thing about an oxygen concentrator is about keeping the vents and filters (some have just one that needs to be changed) clean. As you can see from the pictures below, my vents are gross. But don’t worry, I cleaned them with a dry cotton sock. (The sock went straight into the washing machine!) You can change the filter if you know what you’re doing or have been taught by the DME (Durable Medical Equipment) company who provided the machine for your use. Some oxygen concentrators need to have their filters changed more often than others. Some older machines have more than one filter to change. My one filter is located behind the little panel in the upper right corner in the picture below. It’s REALLY important that you contact your DME company and ask them to come out and change the filter of your machine if you haven’t had it done within 6 months. Ask them how often it needs to be done on your particular machine.

IMPORTANT: Do NOT try to open your machine or try to fix it if it is having problems. Call your DME immediately.

Very dirty vents! Eww!!

Very dirty vents! Eww!!

Oxygen Tube Splitter

Oxygen Tube Splitter


As you may have noticed, my oxygen concentrator is sitting beside my liquid oxygen reservoirs. I use both the concentrator and liquid oxygen at the same time with a very handy device called a splitter. The splitter in the picture is made of brass but I also have an emergency backup splitter made from plastic. Remember, I always have a backup. When a person has to use oxygen 24/7 as I do and many of you do too, it is so important to have back ups of things like 50ft tubing, the nasal canula for your portable, tubing connectors, bipap supplies (mask, hose, head gear, filters, & memory card). You don’t want to be caught on a weekend or a vacation when something breaks and you need another part. Been there, done that… but no more! Hey, don’t forget that duct tape! Trust me… you’ll thank me later. haha!

I hope I’ve explained the basics of an oxygen concentrator in an easy-to-understand way. As always, you can email me at goredrider@gmail.com *hugs* I hope you are making your HAPPY JARS for 2015! Read about it here.