Life on Oxygen

Hello, my name is Christine. I use oxygen 24/7 and I’m 46 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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[I update my age every year on this post]
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Q & A video?

Living On Oxygen for Life

Most of you know that I’ve done YouTube videos about my Bipap or the “Meet Christine”, right? If you’d like for me to make another one, I’ll do a Q&A video if you send me your questions. They can be about me or about oxygen or just silly stuff. Keep them clean questions. Just message me or email your questions at goredrider@gmail.com when I get enough for a video, I’ll make one. Sound like fun?

I finally figured out what I wanted to do with the 3 large lemons my dwarf Meyer lemon tree produced. What’s better than freshly squeezed lemonade? It was so delicious! If only my tree grew more than 3 lemons!

I made lemonade from the lemons I grew!

I made lemonade from the lemons I grew!

Here’s the updated picture of my January’s Need a Hug afghan. Get yourself on the list of recipients if you feel in need of a hug because you’re having a tough time breathing.

January Need a Hug afghan Update

January Need a Hug afghan Update

GO Broncos!!! Need I say more? hehe!

Yes, I'm supporting Peyton Manning for the Super Bowl.

Yes, I’m supporting Peyton Manning for the Super Bowl.

I’ll be attempting more gardening this year. K is building me a raised garden bed that will be about 16″ high. The size of it will hopefully end up being 2’x 6′ and 16″ tall on the ground. I’ll be growing potatoes, Bibb lettuce, cilantro, and spinach this time. Also, the chives and basil are what I grow every year. I hope like crazy that I’m successful and that it doesn’t make me too tired. K is going to build this extra garden next to the tall raised bed. That way my oxygen tubing will reach just fine. He’s so thoughtful. He had to move all my half whiskey barrels to make room. Aww… he’s so sweet. He loves me but this is his way of trying to get me motivated and outside so that I don’t become sedentary which would make my lungs weaker. I don’t need them any weaker. Trust me on that. erg! I’ll take pictures of the garden progress and blog about it! It will be fun!

So send in your questions and I’ll try to answer them. Think of it as a way to get to know me and remember, no question is a dumb question. If I can answer it, I will. Just keep in mind that I’m not a doctor. My answers are based on my experience during my life. Have a great week!!!

2015 Happy Jar Revealed…. she opens the jar!

Living On Oxygen for Life

Happy Jar

Happy Jar

This post is more about becoming more motivated about living life while on oxygen. It has shown me that even though my year was filled with challenges, I still had many happy moments to add to my Happy Jar.

This is the happy jar that I made for my 2015 Happy Jar project. I filled it with written down happy moments that happened for me throughout the year. I’m now reusing this jar for my all-exciting happy moments of this year [2016]. If you’d like to read about what Happy Jars are used for, click and read my post that I wrote titled, Happy New Year!! It’s nearly 2015!.

Today, I dumped out the 2015 happy moments and started to read through them. Last year was a tough year for me. I struggled with motivation and breathing problems. With all of that going on, I didn’t think that I had slipped very many “happy” moments in my Jar. As I read through the “moments,” I found myself smiling while I remembered the fun and exciting times I had. This “Happy Jar” has been a great idea! In fact, I’m hoping to fill it up this year!

I hope you created one for yourself last year with me. If you didn’t, start one now! It’s not too late. You don’t have to be super creative with your jar. Mine is a clean Spaghetti sauce jar that I ran through the dishwasher and then painted and used polymer clay to decorate it. Give it a try and do it your way!

I thought I would share my happy moments with you. Let’s see how many I have. Maybe you will recognize some of them! Granted… not every happy moment of 2015 made it in the jar. It was fun pulling out the papers and reading the things I nearly forgot about that happened.

HAPPY JAR 2015

    ~ I just made a batch of Oatmeal Scotchies (cookies) and cleaned the mess. AND I’m not even tired from it! Hooray!
    ~ Results are back on the CT Scan. My aorta is only 4.3cm instead of 5.1cm. YAY! Whew!
    ~ Going to Oklahoma for 5 days for my birthday/anniversary!
    ~ I finished an afghan for my cousin’s baby! I love babies!
    ~ Made Rocco some doggy biscuits- homemade! He loves them!!
    ~ I finished the family Christmas photobook. I ordered an 8×8 book just for us to see how well it turned out. Can’t wait!!
    ~ My mother-in-law gave me a gift of a t-shirt that’s black with blingy cats. I LOVE IT!
    ~ Sore from painting last night. So, I made brownies as my motivational reward. Then, I continued taping trim and walls! Happy Day!
    ~ I finished my Happy Jar (added the cat on the lid) and made decorative papers for my Happy Jar! So Happy!
    ~ I sent an afghan to one of my parents! He wanted my name and date on it. Awwww!
    ~ I went to the doctor today to get the paperwork started for a new Bipap! Saw K at work, mailed a Need a Hug afghan, and then made dinner in the crockpot & cleaned up the mess. SUCCESS!
    ~ Family came for a visit and they tested out the Margarita Machine I got K for Christmas! Great weekend!
    ~ I’m so happy. K and I finished painting the family room walls, hung curtains, and pictures. Then cleaned our mess. It looks awesome!!
    ~ Klondike goes to Paris with sister and her husband.
    ~ Pictures are now coming in from Paris! Klondike is having a blast!!!
    ~ I finished Klondike’s Adventure in Paris photobook that I made for my sister as a thank you for taking Klondike on their vacation.

An Overload of Information to Catch You Up!

Living On Oxygen for Life

Oh my goodness… I have so much to catch you up on. First, let me show you my MacGyver invention that I took to two movies and a trip to see my sisters a few days ago. It enabled me to take both of my portable liquid oxygen tanks and not have to carry them myself.

Going to a 2 hr and 15 min movie with 2 tanks and this cart I invented to carry both tanks.

Going to a 2 hr and 15 min movie with 2 tanks and this cart I invented to carry both tanks.

I put one of the portables in the bucket and strapped the whole thing in my van on the middle bench with the seatbelt. It worked really well! Next thing I need to tell you that my trial with Adempas is over. I didn’t do very well on it. I had a constant headache and my breathing had gotten worse. So, I talked with my doctor and she agreed to stop the medicine. Having Restrictive Lung Disease makes it hard to find Pulmonary Hypertension medicine that my body will tolerate. Right now, I’m back on 62.5mg of Tracleer twice a day.

Christmas was great!! K and I decorated the house again this year. Unfortunately he had to work on his days off but I had the energy to decorate most of the Christmas tree myself since I went slow. It took me a couple of days to get the ornaments on the tree. Here’s a couple of pictures of what we did.

Our 2015 Christmas Tree!

Our 2015 Christmas Tree!

K made our table look great with a live tree from Jackson & Perkins.

K made our table look great with a live tree from Jackson & Perkins.

I had fun crocheting some holly and berries... I turned them into knob ornaments.

I had fun crocheting some holly and berries… I turned them into knob ornaments.

My Mary enjoying the Christmas tree 2015.

My Mary enjoying the Christmas tree 2015.

 

 

 

 

 

 

 

 

 

 

 

 

When I was visiting my sisters a few days ago, we met up at Winstar Casino since it was the most central place to meet. My little sister is the one who went to Paris and she brought me back Klondike! It was good to get him back home but it looks like he is going to be a world traveler because my little sister said they will take him to Germany when they go. Germany!!! How cool is that? They really liked the Shutterfly book I made of all the pictures they took of Klondike in Paris. They texted them to me each day they were there. By doing this, it gave me a chance to travel by proxy to places that I’d never thought I could go. Overseas! Plus, I got a very awesome purse and a beret! Yippee!!

The French Beret I got from my sister!

The French Beret I got from my sister!

I know I’m overloading you with a bunch of information but I can’t stop now! I have more news to tell you! This one is super exciting because I worked all year to accomplish this one. My dwarf Meyer Lemon tree, that I’m growing in a half whiskey barrel, produced 3 whole lemons for the first time ever and it took all year to grow them. I think I’m going to make lemon brownies with a glaze on top. I forget what they are called but I found a yummy Pinterest recipe. The lemons are HUGE!

It took one year to grow these!

It took one year to grow these!

I’m still crocheting Need a Hug afghans. Even though 2015 was pretty rough and my Happy Jar doesn’t have a whole lot of “Happy Moments,” I’m determined to make 2016 a more awesomer year. Yes, I said AWESOMER which is a new word I invented and I’ll say it until it catches on! haha! Have a great year everyone and stay well and warm. Sorry I had to throw everything at you in one blog post. Believe me, I could go on but, I’ll let you digest this post for a bit before I post more. Lots of love and hugs to you all.

What a day yesterday was…

Living On Oxygen for Life

By some chance and probably by miracle, I was feeling fantastic yesterday. It was probably because I knew.. I just KNEW Santa was coming in a few days! I mean, I’ve been good. Haven’t I? Let me think about it.. ok ok… I’ve been pretty good. Well, anyway, I’m holding out hope that Santa is coming this year. *stomping foot* For sure!

I rolled out of bed and hit the shower to end up at the lab to pray that the lab order was in their computer system like it was suppose to be. Guess what? It was!!! (shocker.. I know!) Ok, so the lab technician had to stab me twice even after I told her not to stick me where she went first. I was showing her where the sweet spot on my arm was the whole time. I swear I feel like I need a little target tattoo on my arm for all the lab techs to know where to draw blood from me. For those of you who have to have lab work on a monthly basis, you know what I’m talking about.

After that was done, I actually still had energy left over. So, I went to Walmart. I can hear you all saying… “Are you CRAZY, Christine???” Um, yes, I probably qualify as being not the brightest bulb on the string of Christmas lights. In my defense, I had to get some stocking stuffers for K and a couple of things for dinner. Ok, I am getting to the point of this blog post. So, listen up. Keep reading… or wake up! Just pay attention… Yes, it’s about Walmart.. indirectly.

I was at Walmart circling the parking lot for what seemed like an hour when I THOUGHT someone was getting into their car to leave. I saw them from the corner of my eye. So, I’m not even sure I saw what I saw. I waited and I waited in my van thinking this dude is going to back out and I’d get a GREAT parking spot. And I waited and waited some more but I looked closer and couldn’t see anyone in the car! So, I pull past the car and what do you know? The person finally decides to back out but I’m far past him now! ARGH! But don’t worry, I eventually find another good spot to park and finally make my way inside. Let the shopping begin!

I’m making my rounds through Walmart.. through the toy section, through the movies section, I closed my eyes to bypass the yarn section (sorry yarn, you know I love you!), and I’m standing in dog aisle looking at all the toys. I heard this child wailing near me. They were in the Customer Service department. She was probably about 9 years old with no shoes or socks on (don’t worry.. it’s in the 70s here still) and her father was pulling her arm, telling her to be quiet and to stop going on like that. That he’ll take her into the restroom… I didn’t hear what he said after that.

I briefly looked at them. I was at a total loss at what someone would do at that kind of moment. I was deeply moved to say something. I could tell something was different with the child. I was a little worried at his tone of voice. I didn’t know if he would hurt her. I moved to the adjacent aisle where I could hear him but couldn’t see them. I had that internal battle of “Should I do something, say something or should I not?” I closed my eyes and was like, please God, tell me what to do. I opened my eyes and the man and child walked to the aisle that I was in and stopped. We looked at each other and I just opened my mouth and out came… “Having a rough day?” and he said something about her not having any patience. I was thinking that maybe he was the one with no patience but I didn’t say that. His daughter (I assumed it was his daughter) was staring at me. I asked the man if she has Autism. He said a really long name and that it was form of Autism. I asked her if she was looking at my oxygen. So, I told her about it and that it helped me breath. She walked over and felt the tubing. We started getting into other peoples way so we ended the conversation by saying goodbye and waving. I told him to have a nice day. When they walked away, I noticed that the girl was quiet now.

This gets me wondering about all the crumby days this last week that I’ve had with bad breathing only to have ONE good day, yesterday, and I end up in Walmart at exactly the perfect time to help distract a little girl so she and her dad could calm down. It makes all those bad days seem not so bad to have been able to help someone a little. I’m so thankful that I had a really good day yesterday to be able to get out of the house. It gave me a chance to be kind to someone else. That’s what living is all about. Be kind to one another.

Stay well everyone. I want to wish everyone a VERY Merry Christmas and a Happy New Year. I would love to hear your thoughts. What would you have done? Or have you ever experienced a moment of “Should I say something?” Has your oxygen ever helped you in an unusual way? I love hearing from you! *hugs*

Know Your Limitations…

Living On Oxygen for Life

Know Your Limitations for the Holidays.

So, you use oxygen. Whether it’s 24/7, like me, or you use oxygen during activity, you should always know your limitations. The holiday season is now upon us. Heck, it’s been upon us since just before Halloween! Personally, I don’t understand that. I’m a type of person who loves to enjoy each holiday for what they stand for. Aren’t you? Though, I certainly can’t wait for K to start decorating for Christmas. He really has a knack for that. Remember last year?

Your limitations are your body’s warning signs for telling you to slow it down and pause for a rest. No one wants you to peter out before the fun starts…whether it’s board games or Football games –backyard or on the TV in your comfy recliner. I think everyone who reads my blog would want you to enjoy the holidays with your friends and family without risking your health by overdoing. Right, y’all?

So, what do you do? If you are the one who does the cooking for the holidays of the past but are now on oxygen, you can either pass the baton to another family member to cook the meal or delegate the whole meal as a pot luck. You can even prearrange by ordering a precooked turkey or ham from your favorite store and have it picked up! Save your oven for the important stuff, like PIE! Yum!

Plan on taking sit-down breaks that are uninterrupted. Got the meal under control or have someone else tending to it? Take that power nap before the meal. Teenagers are a great source for free help. Trust me… I was once one! They will do just about whatever asked to earn a chance to sit at the “Adult” table this year. You remember the moment in your life when you were given that honorary seat at the table where all the adults gathered to sit and eat (and talk!). It was….a beautiful day. *sigh*

With all the activity and excitement, even if you are not prescribed to use oxygen 24/7, you should always use your oxygen as your doctor has prescribed! You should never feel embarrassed to wear your oxygen. Your friends and family care about you and should always put your health as a priority. They want you to have fun too. So, if your body is telling you it’s tired but your brain still wants to get something done, listen to your body. Don’t be stubborn. Just get some rest and ask for help. People are actually willing to help you but most are just unsure how to be of assistance. Need something moved? Ask! Need help getting up from the couch? Ask! Is your oxygen tubing stuck around a chair leg? Ask for help! Someone STANDING on your O2 tubing??? Well, shove him off!! No… Just kidding! I always tell people when they come into the house that it’s ok to accidentally step on the tubing…just don’t stand on it and to watch their feet so they won’t trip. You need to not be afraid to speak up and ask for help. It’s really ok!

Wherever you go and whatever you do for the holidays, I hope it’s full of fun, love and adventure. Leave a comment tell me how you handle the holidays on oxygen! Be well and stay safe. —Christine

I’m a genious!!!

Living On Oxygen for Life

I’m a genious! Ok, well, maybe I’m not technically a genious or even very intellectually smart but I’m pretty darn creative. You see, I have a problem. I want to go to a movie. Normally that wouldn’t necessarily be a problem because K would go with me and carry my oxygen. Right? Yep. He would.

But what if this is a movie that he REALLY doesn’t want to see even though I have been waiting for this movie a whole year for it to come out on the big screen? Not a problem because I have a cart for my portable oxygen, right? Ok. That sounds logical. Just use my cart to pull my oxygen around so I won’t become exhausted from carrying it. Great!!!

Only one huge problem with that… the movie is over 2 hours long which means I’ll need two liquid oxygen portables. (Remember, I use 6LPM of O2) Not to worry because I have two portables. However, the problem is that I have a cart that only carries one portable. And before you ask or say it, I can’t carry one and drag one in the cart. I’d be wiped out before I got to my movie seat.

So now I’m in MacGyver mode. I came up with an idea last night. I don’t care what the end product looks like as long as it works to carry both portables with ease (and maybe even my purse too! Sweet!!!). All I need is my plastic tub that I use for trash in my van, my handy duct tape (my home is NEVER without duct tape!), and my luggage carrier. This morning I was looking all over the house for my luggage carrier and couldn’t find it. I thought my MacGyver moment was doomed already from the start. But, I texted K because he remembers EVERYTHING and surely he’d know where the carrier was hiding. In fact, I thought he took it to work. Don’t ask…

To my surprise, instead of a text reply, he FaceTime’d me back and he walked with me through the house to find it. I know why he did that. It’s because I told him last night that I thought about going to this movie on just one portable. He thought otherwise. With my breathing becoming worse while on the new PH medicine, Adempas, he put his foot down saying take both portables. He wants me to get out of the house more but wants me to be safe and smart about it. Sometimes I’m so excited about something that I don’t always remember I’m not really Wonder Woman. *GASP!!!* Shhhhh… Don’t tell anyone! Aw… He’s so sweet.

Now that I have everything I need, I will begin the construction phase of my MacGyver moment. I will build myself a cart for two oxygen portables! Wish me luck! Pictures of my hopeful success coming soon. haha!

Taking Adempas Begins – a PH medication..

Living On Oxygen for Life

I’ve been living in a fog of a migraine since Friday. The day the Pharmacy nurse came to my house to explain all the ins and outs of the new medication that I was about to start taking. It’s called Adempas (riociguat <– don't ask me how to pronounce that!) and it treats two types of pulmonary hypertension in adults. You can read more about this medication by clicking on the red link.

I’m so glad that K had bumped up our date night from that Friday night to the night before (Thursday) because I wanted to make sure I was feeling well rested for the whole fun experience of seeing Spectre in IMAX! It was so awesome! We even got two FREE movie posters for seeing it in IMAX which I thought was super expensive. But, hey, it was date night, right? It’s not often that I can get K to take me to a movie for date night. We already have our next movie picked out and we are both super excited. *drumroll, please* We are going to see Star Wars!!! I’ve waited 30ish years for this moment. FINALLY they made the Star Wars VII movie. I want to dress in character but I’m not sure if I’m going to yet. Wouldn’t that be so darn fun?? Ok ok… I’m getting way too distracted.. back to Adempas.

So, like I was saying.. the nurse showed up at my house and we went through with filling out all these health forms. You know the ones… What medication are you currently taking, what medication are you allergic to, and then the fun ones began. I always dread this one category of questions: Health History. Are you serious???? Don’t you have that already in your data bank since I’m already taking Tracleer which is another PH medicine? Yeah, I seriously thought that. No, I wasn’t rude enough to blurt it out but I did take a deep breath (well.. as deep as I could, anyway) and started listing off the “most important” health conditions that I have. And then he took my blood pressure to get a baseline reading before I started taking Adempas. One of the side effects of this medicine, which could or could not occur is low blood pressure.

All looked A-Okay with my blood pressure (I never had any doubts about that!). Then he did what I was hoping he wouldn’t do… he opened my medicine and had me take my first dose. *pout* I wanted to wait until today (Monday) so that I could have a relaxing weekend. It didn’t work out to be. The nurse took my blood pressure every 15 minutes to make sure it stayed within normal range. It did! Yay! Like I said, never doubted. haha! But something did happen later that day which made the whole experience blow. grrr!

Maybe it was bad timing? Or maybe it is my body adjusting to this medicine. Since Friday evening, I have had an awesome sized migraine. I still have it. Usually they can last 3 days on average. If this is from Adempas, so far, this is the only noticable side effect, that I’ve experienced which makes me want to count my blessings. I’m starting out at 1mg, three times a day, 6 hours apart (I was hoping to start at the .5mg dose). Yep, I have to set my alarm to remember when to take it… and crap.. it’s almost time to take it again. Ugh! I am pretty sensitive to all the PH medicines. Tracleer has been the only PH medicine that my body has been able to tolerate. Hopefully, adding Adempas will give me good results and can be tolerated.

Meanwhile, my sister and her family are coming down, we still need to hit the grocery store (desperately!), and I’ve only had the strength to do simple household chores over the weekend. I’m not complaining, even though it may sound like I am. Life happens and it happens to have more potholes in the road this year for me. Or so it seems. It’s all in the way we look at life. I can either look at the rest of this week as a mad scramble to get thing ready for this weekend or as a complete excitement to see my family and my darling 5 year old niece. Seriously… you know which one I’ve chosen, right? *wink*

Be well everyone and stay in touch. I have recently become a Guest Blogger at http://www.freshairmedicaloxygen.com (Fresh Air Medical). I answer questions and talk about oxygen there. I have not used them as an oxygen supply company but I’ve heard they are a good company to do business with. They have their customer’s best interest for their oxygen needs at heart and want to provide them with a community feeling with their blog. I’m glad I can help in this endeavor.

So, uh, are you ready for Thanksgiving? What about Christmas? Lots of love to you all! *big wave*