I’m famous!!! *wink*

Living On Oxygen for Life

Yay! I have a podcast thanks to the interview I did while at the Pulmonary Hypertension International Conference in June of 2016 and to Steve Van Wormer’s awesome PHAware Global Podcasts. He helps bring awareness to Pulmonary Hypertension. He gives those of us who have the various forms of PH an opportunity to share our stories of what it’s like to go through the process of becoming diagnosed and then living with this incurable disease.

I was pretty nervous about being interviewed. I hope you will check out this website that includes my podcast and many others’. You can listen to me here (so cool!!):

My podcast by PHAware.global to help spread awareness of Pulmonary Hypertension.

Please support this effort by going to this website: “Donate now to support pulmonary hypertension research. Engage for a cure with phaware.” You could even get an “I’m Aware That I’m Rare” t-shirt to spread awareness when you donate. I highly encourage you to check it out.

After you listen to my podcast, come back to my blog and click on the tab above, “Pulmonary Hypertension,” and scroll down to the section that says “My PH Story.” This is something that I wrote that includes everything I wanted to say additionally to what I said in the podcast.

Love y’all! *hugs*

Little emergencies can be big problems.

Living On Oxygen for Life

IMG_6738

This was a bad moment at the doctor’s office today. The doctor recently started having an oxygen tank at her office because I told her it would be a good idea. You know, just in case. Well, today was that just in case moment when my tubing snapped off as K was switching my tanks.  We were all panicking until K remembered the recently acquired office oxygen tank (with cannula!) kept tucked away for emergencies. I had to hold my broken tubing onto my second full tank to try and get enough oxygen until they found another cannula. Thankfully, K moves fast and keeps a level head in a crisis. All I was in charge of was concentrating on breathing calmly until rescued. We have spare tubing in my van but that was in the parking lot 7 floors below. It would’ve taken too long to get it.

Life has a funky way of reminding me how fragile my body is but I can’t live in fear and never go anywhere. Lately, I’ve become a homebody because my breathing has gotten worse. I have to get myself out of the house more and I’m going I’m going to accept this challenge head on. Well, as soon as K fills my gas tank. I’ve decided that’s a “man’s job.” Honestly, I can’t handle the gas fumes. So, I have K fill my van for me.

What about you? Have you had some oxygen emergencies? Share your story in the comment section. Love y’all!

A little thing about shopping carts.

Living On Oxygen for Life

A tragic accident happened yesterday. *sniff* *gulp* I was hot-footing after K in Lowe’s last night, reminding him to please slow down. You see, even after all this time together with each other, he will sometimes forget that I’m slower than he is. “What?!?” You ask. I know, I know. I’m stunned by that revelation myself but it’s true.

K “needed” more garden supplies. I swear for a man who originally didn’t want a yard when we were house shopping years ago, he sure has taken up gardening as if it’s a lifeline. Honestly, it can be and has been. Even though it’s a lot of work, there’s a lot of joy and even a bit of escapism to it. He’s made our yard it our little project that is never finished and that’s ok because we love every change we bring to it each year.

Now, back to Lowe’s. Right. Where was I? Ok I remember. “Slow down,” and he turns around to look back at me while turning the cart filled with bags of dirt. “K, I’m not made for this speed anymore.” I smiled at him and that’s when my life goes into slow motion. I see K about to say something and then I caught something flying out of the corner of my eye.

Have you ever experienced something happening that you knew wasn’t right but you weren’t in the position to stop it from happening? Well, that was K and I. I was too far away and K was still looking at me when the dirt shifted in the cart that he was still pushing around a corner. There wasn’t a darn thing we could do. My portable liquid oxygen tank got squeezed out of the cart’s seat and flew out and smacked the concrete floor. The plastic casing came wide open and top was tilted out way wrong. Oh crude buckets! I gently picked it up, trying to squeeze it back together, when my mind was wondering if these things blowup. Apparently not this time. However, K’s first thought was, “Is it still flowing oxygen?” Isn’t he so sweet???

Miraculously, the darn thing was still working but I asked him what her would do if it didn’t. He said, “We’d figure it out. We always do.” What a guy, right? It wasn’t until we got back to home that we tossed around some ideas of what to do in that scenario. It’s always good to have a plan in place for such things because I can not be without oxygen for very long before I start to suffer badly and that’s if I’m just sitting somewhere without talking or moving to conserve my body’s oxygen supply.

When we got home we discussed what we could have done if my portable had stopped working. I’m a little nervous to tell my oxygen provider that my portable is broken. But hey, these things happen, right? A lesson has been learned here for us. We will never forget to strap in my portable tank using the child safety belt in the shopping cart. I mean, we took the time to connect it through my purse strap but didn’t do it this time for my portable.

Getting ready for company..

Living On Oxygen for Life

This is how K looks out for me. He’s awesome. I meant to post this last year. I just wanted to show you that there are some really great spouses out there. There are so many things that are just too hard for me to do and that’s when K steps in and takes over. I love this man.

Me: (finally lying in bed with Bipap & oxygen on totally exhausted from working along side K to super clean the house) Thank you so much for your help K.

K: (while mopping the hallway) Is the music too loud?

Me: No. Right now I don’t care about the music or the light being on. I’m exhausted. What you’re doing is so appreciated.

K: (stops mopping) This is what you wanted done.. What you needed, right?

Me: What you’ve done is awesome. You’ve gone above my expectations. Thank you.

I wasn’t ready for a change…

Living On Oxygen for Life

For those of you who read my blog and use oxygen, have any kind of breathing problem or any kind breathing device, you know life can be challenging. Life is filled with highs and lows. When you get in those high places, it feels like you are accomplishing the things you want to do in life. Unfortunately, those high places don’t always last as long as we want them to last. At least, that is how it seems to me. Sometimes the lows can be pretty low and lasts for what seems like a lot longer than I’d prefer.

Switching over to Tikosyn from Cordarone involved a lifestyle change for me. It’s been a crushing blow to my happiness. Instead of one step back in health, it feels more like two steps back. It made me really frustrated, thinking and wondering what I did wrong. It’s made me have to, once again, reinvent ways of getting things done around the house. Some of the things, K has completely taken over which adds more stress for him. Both of us were hit hard with this unexpected change in my ability level. I get short of breath from scooping a cat box (which he now does) or using a broom on the floor.

K takes good care of me and I’m grateful for his love and understanding. He’s come a long way. *wink* He stopped thinking that I was just being lazy about ten years ago. He’s always known that I have breathing problems as well as the pulmonary hypertension on top of everything else. He just didn’t realize or understand how much & how quickly the Pulmonary Hypertension would progress over a relatively short amount of time.

So now, I’m going to take care of him. I’ve decided we’re going on a much needed vacation since we haven’t gone on one in 3 years. Right now all I can think of is how good the sand will feel under my feet with the water washing over them. This will involve a lot of planning for my oxygen needs but it’s always been so worth it. I’ve already secured our accommodations and I’ve even bought travel insurance just in case we have to cancel at the last minute or if one of us becomes sick while on vacation. It’s good to have a backup plan just in case there’s a hurricane too!

We both really need this getaway. We rarely watch TV while on vacation. We leave our worries behind while on vacation too. So it’s like we’re on an island made for us.. though, technically we’re not. This is our way to get back to a healthy mind and release all the stress even if it is for just a little while.

I just wanted to let you know that I’m getting into the swing of the new changes we’ve made. I’m back to blogging and YES Klondike will be going with us on our vacation. My sister sent him back to me! Yay! Stay tuned in for more blog posts from me! Stay well everyone! I enjoy talking with you on Facebook and by email! goredrider@gmail.com is my email address for those of you who have questions or would like to say Hi!

–Christine

Klondike’s Adventure Begins! Off to Germany!

Living On Oxygen for Life

Yesterday was so exciting! K & I drove to meet my sister & family at their hotel for a visit before they take off today for their vacation. It was so great! Yesterday, though, I got a text from one of my twin nephews asking if I’ll make his favorite cookies. The whole family loves Chocolate Oatmeal Cookies. I texted back.. “Of course I will!” I made a whole batch yesterday morning at 5am because I couldn’t sleep any longer. Before I started, I was kind of freaking out because I thought I ran out of sugar and thought I didn’t have enough 1-minute oatmeal but I finally found the new bag of sugar that was hidden away and the oatmeal ended up being enough. Whew!

I made Klondike a new hat, an English to German dictionary (like his French one), a fun tourist map of Germany, some miniature old newspapers of WWII as reading material for my chicken while on the plane, his wallet & money, his Germany Travel Journal (different from his Paris Journal) and his passport. My sister said she will get some German stickers to cut down to size to add as customs stamps to his passport. How clever is that? She’s very creative like me.

The first picture came in today as they are getting ready to head to the airport. Klondike is a PRETTY COOL DUDE! I can’t wait to share his adventure with you and hopefully brighten your days to come like it does for me. Being on oxygen, we need all the fun and exciting things we can get to help us get through life. So, even though owning a rubber chicken who goes off on adventures is a little silly, he does his job in brightening my day. He really makes me laugh so much! lol!!!

Klondike is wearing his fuzzy wolf ears from the hotel and enjoying his first Chocolate Oatmeal cookie. He's ready to travel!

Klondike is wearing his fuzzy wolf ears from the hotel and enjoying his first Chocolate Oatmeal cookie. He’s ready to travel!

This is the cover of his dictionary. It's only 2 inches tall. Everything fits in his backpack.

This is the cover of his dictionary. It’s only 2 inches tall. Everything fits in his backpack.

Stay well everyone!!!

What brought me to think about Suicide…

Living On Oxygen for Life

A good friend of mine wrote this poem and it really spoke to me. It’s about a topic that isn’t talked about enough. Please read this poem and then I’ll begin to outline my experience with this subject.

WHAT WOULD HAPPEN

What if we never wake
To see a smiling face
Upon our families lips
What else could take that place?

Your story has yet been told
But your fear is not just yours
That it won’t be heard again
Through your children’s wars

If you join the rested dead
Because the memories hit too hard
Your fable of what could have been
Will end, silent and barred

So do a favor not for you
But for those that stay behind
Never end your silent fight
For what you couldn’t find

Because all that’s lost is right in front
When you awaken a new day
That pistol’s meant to protect
Not take your life away

Be the one that won’t back down
And the parent that won’t say NO
Because when you’re gone it all goes numb
There’s no rewind for that low

The eyes that stare with crazy dreams
As you awaken from your past
Are the ones of the innocent child
That wants their parent back

When the words come out of you
That now is the time to go
Be sure your memories will not fade
When they sink you down so low

So live this life for those that watch
And do it as you should
But don’t be scared to reach a friend
That has been where you have stood.

Levi Bridwell
2-5-2016

Let me take you back to when I was nearly 15 years old and had just underwent a surgery that would change the course of my life forever. It was the most traumatic experience I have ever experienced in my life that left me with some deep emotional scars. The surgery I had, brought me so close to dying that even the doctor was freaking out (professionally, of course). He allowed my sisters, my parents, and my grandmother to come into the ICU two at a time to sit next to my bed for as long as they could bear to. I was a mess. My older sister was so upset that she started crying and had to leave the ICU. Her boyfriend stayed with me holding my hand. My little sister came in with our grandmother. I was so hot from breathing so hard that the doctor relented and allowed a fan to be placed pointed directly at me to attempt to keep me cool. I had a tube up my nose and down my throat to my stomach to pump out the flow of black bile that I was continuously vomiting up. I was dying and everyone knew it. Yet, I struggled to hold on.

When my little sister came in, and sat next to my grandma, she suffered quietly as she was always so sensitive to being cold. She sat in the direct path of my fan which was on its highest fan speed. I looked at her through the bed rail and I felt so bad for her. My heart rate was up to 200 bpm and I was sweating. I couldn’t turn it off for her. So, I did the only thing I could think of… I gave her my bed sheet for her to shield herself from the fan.

I will never forget the look on each of my family members’ face as they came to sit with me. There’s so much more to this story but I’ll leave it for another time. I just want you to remember this moment as I jump you forward a few years to when I was nearly 17 years old.

Life for me changed radically when I was nearing 17 years old. I started having blackouts. I wrecked my car numerous time due to blackouts, I tried working while I went to high school which made me continuously tired. I became hypoxic, forgetting homework assignments and where my classes were within the school. My psychology class assignment was to write an autobiography which pulled me so deep into depression that I would lock myself in the bathroom and cry. I started dropping classes that I didn’t need credit for to graduate because I was so tired and I was going to fail them.

With all of this going on, my parents had been divorced for about 3 to 6 months and we ended up moving outside my school district. We had to drive ourselves to school everyday instead of switching school which I do not think I could handle.

And then…. I got sick. Really sick. Pneumonia. I was so sick that I was carted off in an ambulance from my mom’s house to the hospital in the middle of a snow storm and stayed for 2 1/2 weeks making me even further behind in school. I had incompletes, Ds and an F on my report card with so many absent days reported that I remember thinking that there was NO WAY I was going to graduate from High School since this was my Senior Year. Plus, I had to quit my job.

Among all of that, my doctors realized that I needed supplemental oxygen at home at night. Everyday I thought about killing myself. Every. Single. Day. I doubt even my best friend knew I was thinking about suicide. So, I come home from a second hospital stay from rebound pneumonia and started my attempt to catch up on my school work. I couldn’t do it because I was such a mess. My mother came into my room to ask me if she needed to find some help for me. That’s all she asked and when I said, “No, I can handle my problems,” she didn’t ask anymore.

When I was like this, I closed myself off, became quiet, because any more added pressure would have been just too much for me to handle. I kept thinking back to the last surgery I had and the looks of my family and KNEW that I could never try to kill myself no matter how much I thought about it. I couldn’t do that to them. I didn’t think anyone noticed the turmoil that was going on inside me. Trying to deal with health issues, trying to graduate high school, dealing with a dysfunctional family life and more. I did graduate. My teachers passed me through due to my effort of trying. We moved to Texas.

Slowly my life started to change once I picked up an old Pentax camera, took long walks (finding a Pecan tree!), and learning to cook a few things for myself. I spent nearly a year just finding myself. Getting use to having my lungs needing supplemental nightly oxygen and learning to accept the future changes that will come. I know life will be ok for me but every-now-and-then I think of that surgery that very nearly ended my life. If I could survive THAT, then I could most likely handle the rest of this mess in my life. But, not everyone can, there are people out there truly struggling thinking that the only way out is through suicide. That’s not the answer. Getting help is the first step to finding your way through whatever life has thrown at you. Find a school nurse or counselor, a pastor of a church, a close friend or call one of the hotlines listed below and tell someone what’s going on that’s making you feel this way. Do it today.

Thanks to Lifeline Website, you can find information about what to expect when calling the Hotline.
National hotlines:

In the USA: you can call the National Suicide Prevention Lifeline free from anywhere at 1-800-273-TALK.

In the UK: you can call the Samaritans anytime, 24 hours a day, 7 days a week, on 08457 90 90 90.

In Scotland: you can call the Breathing Space phoneline, which is available 24 hours at weekends (6pm Friday – 6am Monday), and 6pm – 2am on weekdays (Monday – Thursday), on 0800 83 85 87.