Life on Oxygen

Hello, my name is Christine. I use oxygen 24/7 and I’m 44 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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A good read… trust me..

Living On Oxygen for Life

You know I love writing on my blog about living on oxygen and all that it entails but when an opportunity comes along where I share more of what I know to the world, of course I’d jump at it. I was approached by another blogger, Johan, who writes an incredibly wonderful blog. It’s not about his life. He took blogging to a whole other level. Have you ever been curious about things? Johan interviews people who have incredible stories to tell about all sorts of subjects. Sad stories, adventure, war, inspirational people, space travel… just a lot of interesting interview articles.

When I first visited Read an Interview and started reading the interviews, I thought…these are good! They are something that easily could be in a magazine. So, Johan, emailed me a list of questions pertaining to living with Pulmonary Hypertension and the equipment that I use to survive this incurable disease. I dug deep with this one. It’s the first time I’ve ever done an interview and I hope you like it. If you would like to read it, you can find it here: Living with Pulmonary Hypertension.

We are a strange couple…

Living On Oxygen for Life

Sorry! I started writing this on November 8th and I’m just now finishing it up for y’all. Enjoy!

Yesterday was amazing! I got up early. No, I am talking EARLY, like, before the worms wake up to be eaten by the birds kind of early. K and I are complete opposites. He calls us ying and yang. We are opposites but we fit together in a weird way. He’s OCD and I’m ADD which can cause some problems if you can well imagine but we have this special quirkiness that makes us work.

You see, the day before yesterday (Thursday), I had to take K to his eye exam where he had his eyes dilated so he needed a ride home. I spent the time (boring time) waiting in the lobby of the optometrist wondering just how long it takes to do an eye exam. That’s when a little boy walks over to me and ask what was in my nose (referring to my tubing). I told him simply that I have this tubing that gives me oxygen from this tank. It helps me breathe better. I then, of course, complimented him on getting some Superman stickers on his shirt. Later, I overheard one of the receptionist talking about her son having respiratory problems. She didn’t get her son a flu shot last year and she was planning on getting him one this year and the pertussis vaccine. She was telling the other receptionist that her son can get a simple sore throat and then overnight she’s having to take him into the emergency room with something so much worse. I told her that I was the same way especially as a child. (I know… I butted in and it’s probably a rude thing to do.) I have to catch a sore throat early to prevent getting worse since I also have respiratory problems. We talked about 20 minutes and then K came out ready to check out. That’s when we saw one other receptionist’s nifty watch which we oooh’d and ahhh’d over. The optometrist told him that he needed progressive bifocals. He feels old now. Poor guy.

Anyway, before I get way off subject, let me steer back to what I’m trying to tell you. Ok, let me regroup my thoughts for a second…. Oh yes! I woke up early on Friday, took K to work because his car was left at his mom’s house and I needed my van to go get my monthly labs done. Oh the joys of taking Tracleer. Just before he got out of the van at work, he said, Chris (that’s what he calls me), let’s have a great day. And I was like…. Okaaaay… In my mind, I was thinking of all the things I had to do that day but then he did something fun. He raised his fist and told me to fist bump to seal the deal but I went one step further… haha! It makes me laugh just thinking about it. I said we have to “Wonder Twin activate or it won’t count with the explosion sound and fingers spread out afterwards. You know what? He did it and that made the beginning of my day SO awesome!

I drove all the way to get my labs done and found out that my standing orders were NOT in their system. They were NOT faxed according to their computer. I had emailed my nurse just 2 days prior to confirm that they were faxed and she said yes they were and that I didn’t need to take the paper orders in. Just go get my labs done. Big, big mistake. Next time I will take my paper orders. Phone calls had to be made from the lab and I ended up sitting around there for over an hour. However, I rewarded myself with a Egg McMuffin and a hash brown from McDonalds and all was much better afterwards. I went home watched a Netflix movie, ate lunch and took a power nap because I still had to go pick K up from work. By the time I was ready to go at 2:30 o’clock, K texted me saying start heading his way and, of course, there was a major traffic jam. Typical! Once I got through the traffic, I burned rubber down the highway, but safely! I arrived right on time! Wheww! Then, he informed me that the place we were ordering his glasses was located in the mall. UGH! The mall???? I really wanted to stomp my foot but remembered that were suppose to have a Wonder Twin power good day. So, I put on my happy face and said, “Love to! Let’s go!”

K was pretty sure the Lens Crafters store was located near Dillard’s. So, that’s where we parked my van. We decided to not use my wheelchair because, hey, the store is just right there, right? Oh heck no. We breeze through Dillard’s to only find out from the directory that the store is on the other side of the freaking mall. I told him that I could do this but we may have to stop here and there. As we’re walking through the mall, we were looking in each store and I pointing out the boots and outfits I like or thought would look good on me. I’m not a shopper. I don’t like buying clothes for myself until I’m in clothes buying mood which is not very often and then on top of that, I’m pretty frugal. K hates that. hehe! We were walking and walking and walking… *sigh* I would stop to look at the clothes in the window of a stop to give myself a break from walking. I get short of breath while walking the mall. I was saying in my head that this outfit looks good and that one over there was awesome but then we get to a store that made us both ask each other if we were getting old… I mean, what were those designers thinking or smoking? Ugh!

Finally, we get to Lens Crafters and it took forever for K to pick some frames. We sit down with a sweet young lady and we got to talking. I don’t know what it is about us that brings out the fun side of people but this woman was telling us that she just adopted a stray kitten that she named Ms. Tickles who happens to be a boy kitty. The poor thing is going to grow up having some sort of complex. We had a good laugh in that store. That is until the sticker shock freaked me out. Yikes! We took so long in the store that I darn near ran out of oxygen in my portable but I made it back to the van. It would have taken K longer to go get the van and drive it around the mall to pick me up than for me to just walk back.

It was a good day but busy. Home Depot was our next stop and I think we scared a woman at first because we were in the “self checkout” lane because nothing else was open. Typical! Anyway, there was a security camera screen right there where you scan your purchases. I pointed it out to K and I was waving and smiling at it like a looney person, I’m sure! That’s when K stepped behind me and strangled me like Homer does with Bart Simpson. I was playing it up good too. I should’ve gotten an Oscar! It was so funny. Well, until we realized we had an audience. The poor lady. I looked at her laughing and then pointed at her saying, “Witness! I have a witness!” Of course, she realized that we were playing and so she told us that she didn’t see a thing. haha! We are a strange couple. I mean, K lets me stand on the end of the shopping cart to push me around the store so I won’t get overly tired. The only thing that could have been better was if my portable wouldn’t have frozen up when K refilled it from the reservoir that I keep in my van just before we went to eat dinner. Life sure is crazy. Isn’t it?

I did it!!

Living On Oxygen for Life

I really miss Photoshop. Seriously, I do. I really love taking pictures and also creating neat-looking graphics. So, I fell in love with Photoshop when I had a PC computer. Now that I have a MAC, I don’t have Photoshop. I looked for an app to create something to bring awareness to this month’s Pulmonary Hypertension Awareness campaign. You know, something subtle but eye-catching. Naturally, my picture was in my creation. hehe! Look to your left. Stunning, isn’t it? Ok, don’t laugh. I could only find a very basic app to put text on my photo. So sad. But! It gets the message out there and that is what’s most important. For those who need more information on Pulmonary Hypertension please go to: Pulmonary Hypertension Association.

We need YOU to spread the AWARENESS of Pulmonary Hypertension!

Living On Oxygen for Life

Hello to November! It’s finally cool weather. I never thought this day would come here in Texas. There is something else exciting happening in November! Oh yes… exciting, indeed! November is the month designated for Pulmonary Hypertension Awareness. So, get out your Periwinkle or Purple clothes and support PH for the cure!

Seriously, we need your help. Did you know that Pulmonary Hypertension is a incurable disease… that means, there’s no cure.. YET! With YOUR help, by spreading the awareness of this disease, you can, not only help others to become educated about Pulmonary Hypertension, you can be saving someone’s life. Did you know that Pulmonary Hypertension is often misdiagnosed? For example, a lot of people with PH, before being diagnosed, just think that they are out of shape or their doctors think they have asthma or just extra tired. PH is a serious disease that can kill within 3 years of being diagnosed without medical treatment.

I don’t mean to scare people. I mean I have this disease. There are only 12 approved medications to treat Pulmonary Hypertension. That’s not nearly enough. Double lung transplants can cure you but how many people out there have signed up to be a donor? Are you one? If you are and I could be approved to have a transplant (which I can not), I would thank you from the bottom of my heart.

There are several ways to read up on Pulmonary Hypertension. You can visit Pulmonary Hypertension Association or visit PHAware.

I want to add a SHOUT OUT for two websites that sell some pretty awesome PH jewelry. PHantistic Jewelry and Josephine’s Jewelry. I’ve bought from both of these lovely ladies and they make some awesome jewelry for a price you can’t beat! Support Pulmonary Hypertension Awareness and wear that periwinkle or purple!!!

Supporter of PHA
Women are 4X more likely to develop idiopathic pulmonary hypertension (IPAH) - know the symptoms - infographic

Random Picture Day #12 – The Oasis

Living on Oxygen for Life

Here it is as promised! My little oasis. I really love it. It’s not fully decorated yet but the lights, fan, and mostly all of the furniture are on it. The furniture was a gift from my mother-in-law! Totally awesome of her. I think she understood what K was trying to do for me. We’ve had several neighbors stop by at night asking about our patio and its lights… even a car driving by slowed down and K could them say, “Oh my gosh.. would you like at that?” K was up on a latter hanging lights at the time.

Maybe you are wondering how this patio can help me. It’s an encouragement for me to get out of the house. It motivates me to keep taking care of my plants. K and I have a deal where I am the only one who water my plants. He bought me a Pocket Hose which is lighter than watering with a normal, heavy, hose or a watering can. Before you say it… I’ve yet to have trouble with the Pocket Hose since I don’t turn the water on full force and I also drain the water out of it when I’m done with it. By getting out there to tend to my plants, I get a little exercise as well as a sense of accomplishment of seeing my plants, trees and fruit grow. I can’t tell you what that does for me.

We just hung the party lights!

We just hung the party lights!

I don’t know if you can see it but there is a ceiling fan hanging. It’s turned on by remote. The ceiling fan was a must because K didn’t want me to get overly hot outside. The pergola has a Polygal covering which not only keeps the rain off the patio but it shields some of the harsh sun rays off.

My plants

My plants

Can you see my dwarf lemon and lime trees? Not shown in this picture are my apple tree, herb plants and my jalapeños. This gardening thing is fun but can sometime be frustrating since there are these little things call Avids. Grrr! I want to grow Spinach next!

And finally a picture of ME! This picture is of me on the day K and I took my mom back to the train station for her train ride home. I was thinking… “Awh ma…. do you really have to go home?” *wink* We had a great time watching lots of movies!

oh mom

Take care of yourself! Let me know if you have any questions about me for a blog post or for the Q&A page! I hope you got your flu shot already! *hugs* to you all!! Happy Halloween!

Word of warning! Save yourself the trouble.

Living On Oxygen for Life

Most of you know that I have this love/hate relationship with my darling/demon of a cat, Mary. She’s sweet, she’s cuddly but she’s also crafty in her attempts at plotting my demise by chewing holes in my oxygen tubing. But this isn’t what I’m wanting to talk to you about.

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What I want to talk to you about is something much more serious. I was watching TV one day when this commercial came on about this so called AWESOME new kitty litter that is soooo light weight. It’s made by Tidy Cat and surprisingly, it very light weight compared to their original Scoopable Litter. My cat is a strictly indoor cat. Although, lately, we’ve been letting Mary out on my new oasis of a patio (pictures coming soon!) to let her get some sun. You know how much cats love the sun! She NEVER roams because she so timid. We are luck in that because when we moved into this house, everyday for a while, a stray cat got hit in the street by a car in front of our house. It was very sad and I was thinking our house was a little cursed for a while. It was awful.

Anyway, I’m getting a little off topic. Sorry! This new cat litter that’s so light has a huge problem. The moment you stick that scoop into the litter, a cloud of dust rises. Let me tell you… for a person who has serious lung problems, this is the LAST thing I need to be doing. It got to the point where K had to take over this chore because no one, really, should be inhaling this stuff. So, if you have a cat and you are tempted to try it, DON’T! Save yourself the trouble of having to go out and buy better cat litter to change out your precious kitty’s potty box. Plus, it doesn’t hold in the stink either. UGH!

So be warned and breathe easy. *hugs* to you all!

Health Update..

Living on Oxygen for Life

Hello! I hope you read my last blog post and realized this is my health update. What’s crazy is that it seems like it’s been so long since I blogged last. What’s wrong with me??? My motivation has tanked badly but never fear. I am STILL here! I post on Facebook and Instagram. So, you can get a glimpse of my life that way. In fact, if you don’t have Facebook or Instagram, you can come to my blog and on the lower right side column you can see what I post in those two apps. I try to make it accommodating for those who do not wish to have FB or Instagram. I don’t want you to feel excluded. I love you all! haha! *hugs*

Ok Ok! I’ll get started already on my health update. Where should I begin? You probably already know that since August of this year, I have magically become Hyperthyroid. Don’t ask me how, because no one… I mean NO ONE knows for sure. One doctor says it’s from my heart medicine, the others think it could be hereditary through my father’s side. If it was caused by my heart medicine (Cordarone), I should be Hypothyroid which I am not. Before taking Opsumit, my TSH was teetering on the “Hypo” side and WHAM-O I’m Hyperthyroid. Confused yet? Yeah, join the club. *sigh*

So, for the last few months, I’ve been taking thyroid medicine. Cause you know that I love having to take just ONE MORE PILL! Oh wait, I take 3 of those pills a day. Ok Ok… 3 MORE PILLS a day! I had my annual physical last month and was thinking, hey the doctor can get all my thyroid blood tests done and all the other labs done all in one stick. Unfortunately, he only ordered the TSH and not the T3 and T4 labs. That’s what I get for assuming and not double checking with the doctor. I had to rush over to the lab again to get restabbed. Always a joy! *wink*

Needless to say, it took a crazy long time to get the lab results back for my thyroid. The T3 and T4 are finally within normal range. Hallelujah!! However, the TSH is still pretty low at .02. The Endocrinologist said it will take time to get my TSH back to where it belongs but she is hopeful that I will not have to be on a steroid medication. I am avoiding that. I don’t do well on oral steroids. It makes me swell up and retain water. I only do well on IV steroids. So, my doctor was REALLY hoping that my thyroid would respond to Methimazole (Tapazole) and because it’s responding, I’m to continue with the medication. Labs every two months and an appointment back with her in 4 months. She reminded me to call the pulmanologist if I have a fever and start feeling like I’m coming down with something (sore throat) so that I can have my white blood cells checked. Methimazole can affect the White Blood Count and leave you vulnerable to infections. Hooray!! This was especially nice to hear after the fact that I had a terribly sore throat last week. Since I’m always on top of these things, you can bet my phone was dialing my primary doctor before I even could say, “I better call my doctor for antibiotics!”

Now, you are probably wondering if this is overuse of antibiotics. For me? No way. I rarely have need of them because I’m very careful about my health and being around others who may be sick. In fact, I think I’ve only needed antibiotic about once a year and that’s precautionary. My lung volume is so low that I can’t wait long to see if I will recover from a sore throat. Why risk it? In the past, I’ve gone from sore throat to pneumonia overnight. Ask my mom, she’ll tell you. So not fun.

Now that I’ve been off Opsumit for two months, my breathing is no longer so labored when I do chores. That’s not to say that I don’t have shortness of breath while I vacuum a room. That’s a given but at least I’m not bent over gasping for air either. Thank you Jesus! I am definitely happier for that bit of mercy. I think some of this happiness comes from the oasis my husband had built for me. Our back patio is now where I can come outside and sit down to enjoy some outdoor peace. I will have to show you some pictures of it on my next Random Picture Day which will be soon.

Be well everyone! Take care of yourself. I hope you have a great Halloween! You can always reach me through my email at: goredrider@gmail.com