Life on Oxygen

Hello, my name is Christine. I use oxygen 24/7 and I’m 45 years old. I didn’t always have to use oxygen. It all began when I was 17 years old. It was a monumental change in my life. Since I was just a teenager at the time, it hit me hard. I’m hoping with this blog that people who also use oxygen can see that life isn’t over just because you need oxygen. I think the hardest part for me was accepting that I’ll never live without it again. Once I jumped over that hurdle, life began to change. For the good.

So with this blog… and for all those who are interested in knowing how I live with oxygen needs, I’ll post what I know in hopes that it will help others. Spouses & families too! I am married and what I’ve gone through since I was 19 years old, he’s gone through too with me.

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Why?

Living On Oxygen for Life

I’m feeling really emotional right now. I get this way when I have a migraine. It’s really strange. While the pressure and pain is so bad in my head and neck, something always breaks through that tough-girl exterior and tears start rolling.

This time is no different. I wanted to distract myself. So I picked up my phone while I’m still lying in bed and scrolled through Twitter. One post caught my eye. A 3-year boy had just died from Pulmonary Hypertension and a hole in his heart.

First, I was so sad for this child. Then, I got mad for this boy and then, I was confused. Here I am at 45 years old. I was born with 2 holes in my heart and with PH as well as some other major complications such as Scoliosis. There wasn’t any PH medication when I was a child. The doctors didn’t send me home with oxygen until I was 17 years old.

This is where I get confused. Why am I still alive and this precious child is not? I know my parents weren’t rich but they always found me the best doctors they could get me to. I’m sure they prayed A LOT over the years especially during surgeries and bouts of pneumonia.

It’s so, so… I don’t even know how to describe it, other than to say it’s almost mysterious how one person’s life connects to another and then to another. It’s almost as if we could be holding each other’s hand in a cosmic way. A chain of events. So, why did I survive when others did not? I’m not vain about it. I’m not more special than anyone else.

I may not see the reason in my lifetime. Perhaps, when I do die the Lord will hold my hand, turn me to look back on Earth and point, saying, “This is why.” I sure hope so. I just have to keep the faith and have a whole lot of patience. Until then, I’ll just keep on blogging.

I know that was pretty deep stuff. I told y’all I get emotional. At least I got that off my chest and now I hope I can start feeling better. I’m so ready to feel better.

Getting busy and having fun… keeps you happy.

Living On Oxygen for Life

Finding something to do with your fireplace when you feel uncomfortable about using it because you use oxygen is tricky but K managed to do just that. First, we had to …ok ok.. HE had to clean it out. The cobwebs were something I wasn’t going to get close to. (and he’s even afraid of spiders!) He’s so brave! At first, for a Christmas present to each other, we were going to get an electrical fireplace insert. However, we could never decide which one to buy and frankly, we just didn’t know what we were doing. So, K had an awesome idea. I mean totally awesome. Well, it’s awesome to me.

First, came the cleaning out part… like I said just a few seconds ago. Then we shopped on Amazon.com (who doesn’t love that website??) and found the perfect thing to put INSIDE the fireplace!

fireplace

I had to get creative because when we got the candelabra, we didn’t realize it was intended for real candles. So it had a spike where the candles go. I brainstormed about how to be able to use faux candles (which we bought at Big Lots) inside the glass votive candle holders. I came up with 5mm thick craft foam that I cut into circles the diameter of each candle base. It was just thick enough that when I pressed them to each of the candle holders, the metal spike wouldn’t poke the bottom of the glass votive holders. I know.. I’m good! haha! After that, we chose batter-powered realistic candles that have a 5-hour on timer function. K had the greatest idea after that. We noticed it was missing something. He went to a glass store and took the inside wall measurements and had them cut 3 mirrors and now instead of seeing the back of the fireplace, we see the reflexion of the glowing candles.

Since that project is finally done, I moved onto my next one. The fairy garden. I’ve been learning a lot about Polymer Clay through Pinterest (I love that website too!?!). Polymer Clay is what I made my Happy Jar from. I considered that practice for the fairy door that I finished making the other day. Now, I’m going to use a Ball jar to build the fairy house and attach the door to it.

FairyGardenProject
It’s time consuming but it gives me something to do and look forward to when I have days where I don’t feel so great. Remember that raised flower bed I got for Christmas from Santa? Rocco had his picture taken in it. Well, I’m going to plant spinach and some herbs and whatever else I can fit in there. There also will be my fairy garden right there off to the side of the herbs…or whatever is growing!

In between making the bits and pieces of my fairy door and garden, I’ve started yet another project. I don’t normally have so many things going at once. It can be a little confusing and I like to finish one project and then move on to the next. It keeps the excitement going and I have something to look forward to in the future. It gets me out of bed every day. This project, though, I was asked to do. I’m making a family Christmas photo book. I use Shutterfly for all my photo books. I can only work on the book a page or two at a time. It’s very stressful to me to concentrate so hard. (hmm.. that didn’t sound right! *wink*) I want it to be perfect. Here’s the cover of the book. That’s all I’m going to reveal. Everything else is top secret. I want the rest to be a surprise for K’s mom and family. Cleaning up 110 pictures after weeding them out of almost 300 pictures was VERY tedious. That part is NOT fun unless it’s a smaller amount of photos.

AnotherPhotobookProject

I really feel that it’s important to stay active and engaged in life. Find a hobby that you’re interested in. Try a new one. You don’t have to be super creative or artistic. Just do something that makes you really happy. Instead of writing emails, get some cute notecards and hand write to someone. It’s always fun to get a surprise in the mail from someone you know. Heck, get blank notecards and draw a picture on it with crayons for that matter. Oooh that sounds fun. I may have to try that. I’m not good at drawing but I bet my family and friends wouldn’t care! Right? *wink*

Just find some hobby that gets you out of bed every day. Stay well. *hugs*

Pro or New to Oxygen? Read this…Maybe you didn’t know this.

Living On Oxygen for Life

There are many of you who are new to using oxygen but also those of us who are practically pros at oxygen use. But there is a topic that is important to talk about that even some pros don’t realize at how important it is. I may be saying things that you already know but bare with me. I’ve had a few people who have asked about this topic who just didn’t know that they should be doing this. Ok ok.. I will just jump right in and not prolong this mysterious topic.

If you are reading this blog you either were prescribed to use oxygen, whether it’s 24/7 or just during exertion or with activity, OR, you have a relative who uses oxygen in this way. Ok… I know you are probably thinking.. “Get on with it.. spit it out already!” Whew! I’m getting there.

What I’m leading up to is this: No matter how you were prescribed to use oxygen (24/7 or as needed for activity), taking a shower in my opinion is considered an activity AND in my personal opinion you should use your oxygen while you shower. Think about it. Do you get light headed if you are taking a shower and not using your oxygen? Feeling a little tired and/or woozy? Maybe you feel a bit like you may faint or pass out? Are you feeling like washing your hair is wearing you out? It’s humid in the shower. What would you do if you actually fainted in the tub alone all because you didn’t use your oxygen?

Whatever type of oxygen machine or tank you use, you can still leave your machine or tank in one room and use a 50 foot tubing to run all the way to the bathroom. The tubing can get wet..even submerged. I gather up enough slack in the tubing and drape it over the side of the tub and it lays on the bottom of the tub while I shower. When I’m done, I use a towel to dry it off. It’s that simple. By using oxygen while you shower, you aren’t taxing your heart as you would if you didn’t use it while you showered. After all, it’s all about staying safe and healthy. So be safe.

Check out my Living On O2 for Life Facebook Page or my Instagram. The links for both are in the right column… Over there —>

Love to you all!

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*

A little off topic but I had to share…

Living On Oxygen for Life

Before I started taking medicine for Pulmonary Hypertension in 2006, K and I would go dancing. We’d only go to a dance club for about 2 hours, which is about how long my energy would last from dancing the whole time. Plus, there were smokers in the dance club and that bothered my breathing. I love to dance. Granted, I’m not that good at it and it is REALLY hard to dance with my portable hanging off my shoulder or sitting on the dance floor at my feet. But I did it because it made me SO HAPPY to get out and have fun even though it made me tired and that I could only do it for 2 hours. I still dance at home just to have fun and also to make K smile.

When we went out, I would get all dressed up and looking nice because, hey… I’m looking nice for my man… not for anyone else who’d see me there. It’s all about K and making fabulous memories with him. My words of wisdom: “Just getting out and trying things that make you happy for a little while will give you the memories you may need later on in life.”

So, when K and I were driving to the dance club, I had a ritual that I did every time I got into the car. It had to do with the time he took me to see The Blue Man Group. I fell in love with one of their songs that I’m about to share with you. He bought the cd for me and when we were driving to the club, I’d put that cd in and play that one song. I would start singing it so loud and acting out the song the whole way. It got to the point where K would start asking me if I was going to put in my “Going Dancing Song.”

Songs can change moods. They can lift you up or drag you down depending on the song. I try to stay away from sad songs. I don’t have many songs on my phone but there are some songs that are those “feel good” songs… and this one is like that. It expresses how I feel for K. I hope you like it too. Now get up and dance along!!! Love to you all..!!

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.

Happy New Year!!! It’s nearly 2015!

Living On Oxygen for Life

A lot of you know that last year I did a New Year’s Resolution of the “Need a Hug” where I tried to make and send out afghans. I tried hard and I got a lot of afghans made and sent out to those who participated in the “Need a Hug” giveaway. I thank you for that. I hope those of you who received an afghan are still enjoying them. In fact, I still have one more to send out to New Zealand!! I’m so sorry it’s taken me this long to get it to you. You know who you are. *wink* Don’t look HOPE! *HUGS*

This year (2015) is going to be SPECTACULAR! I don’t have the usual New Year’s Resolutions. I have started coming up with New Year’s Resolutions that have the goal of making OTHERS happy which in turn ends up filling me with JOY! What could be better than a recipient of my New Year’s Resolution idea to become filled with JOY and HAPPINESS?? That is a goal too, right? It doesn’t have to be all about ME.

So here’s my idea. I am borrowing it from somewhere I found on the internet. It’s called a HAPPY JAR. What is that, you ask? Well, I mentioned on my Living On O2 for Life Facebook Page. Here’s what a Happy Jar is in case you missed my Facebook post:

Who all is going to start a Happy Jar for next year’s happy moments to be written down and placed inside the jar? On December 31st [2015], we will open our own jar to read the slips of paper and remember the good and happy things we’ve done during the year. They can be happy things, accomplishments, good news from doctors, something that made you really laugh, or someone who either you were kind to or someone was especially kind to you. Just stuff that makes you happy and smile!!! Who’s with me???

Ok, now, get a jar and decorate it anyway you want to decorate it. Let your imagination run wild. So, get your glue, paint, decoupage supplies, or crochet something to decorate your jar. Anything and everything will do! Whatever you already have in your house. Here’s a few pictures of what I’ve been working on today. This is my Happy Jar. It’s just a Prego Speghetti jar that I decorated using polymer clay. It took me HOURS to do this and I’m not even done yet.

Happy Jar

Happy Jar Lid

So, let’s do this! Who’s with me? If you make a Happy Jar, take a picture of it and email it to me at goredrider@gmail.com so that I can post them online for everyone to see. Then when December 31, 2015 gets here, we can all open them up to read how many awesomely happy days we had. Let’s make this year the best!! Let’s make life happy.

The last thing I’d like to mention is about the Need a Hug afghans. I still have names in a jar for the people who have emailed me for the Need a Hug giveaway. For those who did not get selected, I have decided to try to create an afghan and send one to each of you. It will take time to do this but it’s something that I really want to do. Have patience with me. I have 7 names left. *big grin* Happy New Years Everyone! Don’t let the celebrations overwhelm you and cause problems with your breathing. Take care of yourself and stay warm. *hugs*

OH P.S. Did I mention that my Thyroid is back to a normal level again! I got the results back from my lab work the other day and I have to admit… I was jumping and screaming for JOY! I’m normal again! Hooray! However, I’m still taking thyroid medicine hoping the doctor will start weaning me back off of it. I hope! hehe! I’m SO EXCITED!!!!!