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.

Each comment posted is reviewed for spam prior to possible posting. If you want to follow this blog, please sign up for email notification for each post I make. Look to the top of the right column of the blog to sign up.

Donate to Need a Hug using Paypal

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 (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*

A new PH medicine to be added..

Living Oxygen for Life

Well, I’m pretty nervous because I’m going to subject myself to trying another Pulmonary Hypertension medication that’s fairly new. It’s called Adempas. It will be added to the PH medicine that I’m already taking, Tracleer.

It’s so complicated, with all of my health problems, to treat Pulmonary Hypertension. With each PH medicine I try (with the exception to Tracleer at half dose), my body isn’t able to tolerate them because of my scoliosis that created my Restrictive Lung Disease problem.

What’s suppose to help one of my problems creates terrible results for my other problems. I can’t tell you how frustrating it is for K to watch me go through this and not be able to do anything to help make trying new medicines any easier. Spouses go through so much along with the patients. It’s just as heart wrenching and maddening as being the one trying a new medicine, unsure if this is the one to either make me feel me feel better or make me feel so much worse. There is no cure. We can only hope to slow its progression until a cure is found.

So, here I am after my Pulmonary Hypertension doctor appointment today, waiting to hear if the specialty medication application was approved which will probably be some time next week. Then, I’ll find out how much more this will cost me or if I will qualify for Co-Pay assistance. PH medicine does not come cheaply and can only be dispensed from a “Specialty” Pharmcy. Thankfully, my PH doctor has agreed for me to be titrated up on this medicine slower than normal. We’re hoping by going a little slower, I may be able to tolerate this medicine a little more smoothly.

Meanwhile, it’s raining like crazy here. The air is holding on to all that moisture as long as it can to make me suffer, I’m sure! haha! Not to worry! I have ice cream in the freezer. It helps me to survive anything. Probably even a Zombie Apocalypse too! You never know! Don’t doubt the power of ice cream!!! Mwahahaha!

Be well everyone! Have fun with the Trick-or-Treaters. May you actually have “little” kids show up at your door this year. Be safe.

Remember that November is Pulmonary Hypertension Awareness month.

Klondike’s Big Adventure – Last update!

Living On Oxygen for Life and Klondike’s Adventure in Paris

And now what you’ve all been waiting for…!!! Klondike’s final Paris adventure update. My sister and my brother-in-law are home now and they still have Klondike with them. Yes, I miss that little guy (which isn’t quite so little according to my sister!) but I know he must still be having fun! Also according to what my sister has told me about their adventure with taking Klondike along… People were taking pictures of them while my sister was taking pictures of Klondike! Plus, people were trying to photobomb Klondike’s pictures! hahahaha! Apparently, Klondike added a whole new dimension of adventure to their trip. I’m just glad they had an excellent vacation.

Let’s check out the pictures!

Here you see Klondike braving the Space Mountain with my brother-in-law on Saturday in Paris!

Here you see Klondike braving the Space Mountain ride in Disneyland with my brother-in-law on Saturday in Paris! They’re SO brave!

Klondike isn't sure if these are Mickey or Minnie Mouse ears but he looks fashionable!

Klondike isn’t sure if these are Mickey or Minnie Mouse ears but he looks fashionable!

I don’t think you can go wrong with a pair of Mickey ears! (or are those Minnie’s ears?)

Klondike is posing at the Lock Bridge. He looks like he's not too sure why there are locks on the bridge.

Klondike is posing at the Lock Bridge. He looks like he’s not too sure why there are locks on the bridge.

Here is the locks up close on the bridge.

Here are the locks up close on the bridge.

Klondike posing in front of the river Seine in Paris

Klondike posing in front of the river Seine in Paris

The River Seine and the Eiffel Tower in the background. Wow! Klondike is getting around!

The River Seine and the Eiffel Tower in the background. Wow! Klondike is getting around!

Who knew it was Fashion Week in Paris? Good thing Klondike is dressed for it!

Who knew it was Fashion Week in Paris? Good thing Klondike is dressed for it!

Thank you for following along with Klondike in Paris, France. Perhaps he will have another adventure in the future! Yay! Many, many, many thank yous to my little sister and her husband for being so gracious about offering to take Klondike along on their vacation. Be well everyone and have a little adventure of your own! *hugs*

Day 3 of Klondike’s Big Adventure!

Living On Oxygen for Life and Klondike’s Adventure in Paris

Yesterday was a fairly quiet day for Klondike and I haven’t heard from them today at all. I hope they are ok and having a good time because. tomorrow, they go home. I noticed in one of the pictures from Day 2 that I didn’t post on my blog has Klondike in it. I hadn’t seen him in the picture before. I guess I was looking closely enough. This was taken in Disneyland. I had to ask what the characters were that I was seeing. My sister said thought they were Ghosts dressed for Halloween. I told her that they looked scary to me. hehe! Let’s see if YOU can find him.

Where is Klondike?

Where is Klondike?

I only received one picture yesterday. They (my sister, her husband and Klondike) all went to a show at the Moulin Rouge. I’ve always wondered, since I watched that movie, what it was like inside. I guess I will always be wondering because I only got this one picture. Klondike looked pretty excited!

Klondike visits the Moulin Rouge for a show.

Klondike visits the Moulin Rouge for a show.

I really hope you liked following Klondike’s adventure in Paris. I’m sure he’ll be going on another one in the future. I don’t know for sure when I’ll be getting Klondike back from my sister.

Lots of love, hugs and happiness to all of you! Hey, if you haven’t already, get your FLU shot. I’m going to be getting mine next week. YAY! Even K is going to get one!

Day 2 of Klondike’s Big Adventure!

Living On Oxygen for Life & Klondike’s Big Adventure

This morning I woke up a little earlier than usual. I was hoping to have received more Klondike updates from my sister today. So, at about 6:30am, I crossed my fingers and said a little prayer in hopes of an update. Now, mind you, I realize that this is their vacation and they are there to have fun for themselves which makes it all the more special to me that they are actually doing this whole thing… WILLINGLY!! haha! It’s great!! It really has me excited and happy. I wake up wondering what kind of poses they’ll have Klondike doing next.

Here’s today’s batch of pictures!!

Klondike's relaxing in an oversized tub. Look at the bubbles!

Klondike’s relaxing in an oversized tub. Look at the bubbles!

Wow! When I first saw this picture, I thought he was in a hot tub. I replied back to my sister… Ohhhhh…Chicken soup!

Klondike getting on a train to Disney - Paris

Klondike getting on a train to Disney – Paris

Klondike is watching the French countryside pass on the way to Disneyland.

Klondike is watching the French countryside pass on the way to Disneyland.

Klondike holds his ticket to Disneyland!

Klondike holds his ticket to Disneyland!

Lucky Chicken!!!!

I think Klondike is wowed by the magical castle in Disneyland.

I think Klondike is wowed by the magical castle in Disneyland.

This castle seems bigger than the American Disney castles. What do you think? I hope you’ve enjoy today’s Klondike’s Adventure Update. have a GREAT evening or day, wherever you’re reading my blog from. Stay well and don’t forget that flu season is coming.

Get your FLU shot now.