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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I’m moving my Need a Hug…

Living On Oxygen for Life

I just wanted to let you know that I’ve created a separate blog for the Need a Hug project that I do. I’m attempting to keep to create a home of its own to show you each afghan I create as I go along! I’ve uploaded every picture that I can find to that blog. If you have received on of my afghans and would like your picture on the Need a Hug blog, email me at goredrider@gmail.com

I’d love to show others how much people enjoy the afghans and lapghans that I send. Naturally, I don’t post any picture that I receive with your express permission. You know how I feel about privacy. So, take a look at my newest blog at Need a Hug Project. It’s REALLY new… so please follow if you’d like. *hugs* Thanks everyone! I also post on my GoFundMe page! Thank you so much for the generous donations I’ve received!!!

Love to you all!!!

Planning a road trip…

Living On Oxygen for Life

One of the most important things people do not tend to think about when planning for a road trip while having lung issues, is the how the path you decide to drive will affect your breathing. When I turned 40 years old (nearly 6 years ago!), I begged my husband to take me to Las Vegas. Nearly everyone I knew has been there and had fun. I just haven’t been there and I wanted to go so badly. So, I made it my Birthday wish. Over the years leading up to my 40th birthday, K would always tell me we couldn’t go because it’s a LONG drive and there would be just us driving. He also didn’t think I would do that well on the road driving through the mountains.

Eventually, I wore K down and he started thinking about going since it would be my big 4-0 birthday and he wanted to make it special. We needed someone to go with us. Not just anyone. We ended up taking my MacGyver-like brother-in-law and my older sister, who just happens to be a Physician’s Associate. I asked all my doctors how they felt about me going to Las Vegas (and then on to California) and they all said the same thing. Stay out of the mountains.

Mountains and any altitude that you are not acclimated to can create a big problem for those of us who have breathing problems. Things like increased shortness of breath, sleepiness, chest pain, head aches, and nauseation are just a few of the things that I experience in altitude that is within the range of 3000 feet or higher. It doesn’t take long for the effects of altitude to effect me. It’s a distinct and highly recognizable feeling and it can not only make you feel miserable, it will make you sick.

So, what did we do? First, let me tell you, you must have a back up emergency plan if you truly decide to go… which I don’t recommend doing without a backup plan and talking with your doctor first. Your life and health are too important to not be overly cautious. I then started charting the route that we took. K and I only drive 10-hour days while on a road trip (and yes we took our road trip mascot.. my rubber chicken!).. so we needed to make sure we stopped in locations that, not only have a lower altitude level, but also a place to refill my oxygen if it is time to refill my liquid oxygen reservoir. Wouldn’t want to run out of oxygen while on the road, right? That would be bad as I started using a tad bit more of oxygen while in the car.

Since I live in Fort Worth, Texas, I had to pick a route that skirted most of the mountains and stayed within the lower altitude range. I live in an area that is at around 700 feet above sea level. So, I was guessing that my maximum tolerable altitude would be 3000 feet. Yes I would still have trouble but I would be able to go since my sister was going with us to keep an eye on me. Yes, she’s an awesome sister. I only wished that my little sister could’ve gone too.

I bet you are wondering how I planned the route. First, there’s an app for that but most importantly, there is a really great altitude website that lets you click on any given area and it will tell you the altitude. You can use this map for locations anywhere around the world. Using this, I was able to figure out which highways to use to make my roaodtrip the safest route possible. It wasn’t fool-proof. I still had serious headaches and I was really tired. However, I had the foresight to have purchase a wheel chair through Amazon.com and I took my pulse oximeter to monitor my oxygen saturation.

I hope this helps you plan your road trips. I posted this information in hopes that you remain healthy while on vacation and have all the fun you deserve.

I’ve had enough of July…

Living On Oxygen for Life

thehalfmoonJuly2015

Lately, I have become a bit lazy and now I’m paying for it. It’s not really a laziness by choice. It’s one of those laziness that creeps up on you because you haven’t felt well enough to be motivated to do much. It’s a struggle for me at times. Right now… I’m trying to deal with this malady as best as I can.

It’s gotten to the point where I stopped calling friends & family or leave the house much for anything besides doctor appointments and grocery shopping with K. That, in itself, is bad. I need to push myself to do things because I don’t feel the energy to do them. I’m talking about making dinner, processing laundry (i.e.: changing loads, folding or hanging up shirts), and swiffing the wood floors. All of this seems really easy to do, right? It looks easy to me. It’s just that when I have a monumental Migraine *knock on wood* everything comes to a standstill. K picks up the slack and keeps things going. Unfortunately, this time, I didn’t rebound as well as I normally do.

Maybe it’s the Texas heat or maybe my breathing is actually getting worse. In fact, K actually picked up the laundry basket full of clothes, as he was making himself a sandwich for lunch, and placed it on the counter. I wasn’t sure why he did that. So I asked him and he told me he did it so I wouldn’t have to bend over and pick it up. He knows how bending over affects my breathing now. Sure, he could’ve carried it all the way to the bedroom but he doesn’t want to make it THAT easy for me. I need to keep active or my health will decline.

I’ve started writing a TO-DO List to get me going again. So far, I’ve accomplished one thing on it which is tonight’s dinner. YAY! I have been crocheting a lot and I’m getting ready to send out another Need a Hug afghan. Just please give me a few more days to get myself back into the swing of things. I’ll be posting more often again. This month has been so weird. It’s definitely NOT normal for me to be so quiet. So, I’m sorry for that. I’ve had enough of July’s laziness and I’m ready to come out swinging in August! Watch out! haha! *HUGS* to you all!!!

The above picture is one that I took a few days ago. The moon was low enough in the sky to take a pretty good shot at it. I love taking pictures! It only took about 15 tries to get one this clear because I didn’t use a tripod. I didn’t want to lug it outside. haha! Space intrigues me! I loved the pictures of Pluto! That was AWESOME!

[2015]

Random Picture Day #14

Living On Oxygen for Life

I had a very exciting 4th of July weekend. My older sister came down for a visit and Saturday, we all went to her in-law’s house to watch the fireworks display while sitting on a lawn chair on the sidewalk. How awesome is that? They had great food and HOMEMADE ice cream (two flavors… chocolate or raspberry). I was in ice cream heaven for a little while. Yum! While we waited for the Fort Worth firework show to start, the kids lit the sparklers and my niece (who’s 5 years old) had a hay day with the snaps that you throw on the ground and they pop like a fire cracker. K was so funny. Every time she threw one near him, he acted all scared and jumped and screeched. Oh the joys from the laughter she makes. Even though I had a LOT of fun, the fireworks smoke and the humidity became too much for me. I had to go inside after the show was over. When I got home, I was feeling it badly. Sunday, I got up to see off my sister & her family and after that.. it was a blur… We crashed for about 4 hours. A five year old can really wear you out!! Sheesh! Once again, Miss C, told me that she still has the little canula tubing that I gave her when she was about 2 years old. So sweet and precious.

I’ve been pretty busy lately with gardening, crocheting, and working on a new adventurous project involving my rubber chicken, Klondike. Maybe you’ve heard? You can read about it here. So, I’ve been getting him prepared to leave and head to my sister’s house so that he may continue on to PARIS, FRANCE!!! I’m gathering things that he might need for the trip…. He’s getting really excited and I don’t blame him one bit. *wink* I just think that this is such a sweet thing my sister is doing for me. Here’s what I have so far!

Passport with Klondike's picture, Mad Money, a Beret and matching scarf.

Passport with Klondike’s picture, Mad Money, a Beret and matching scarf.

I’m also having some gardening luck this year. I actually have 3 whole lemons growing! *shocker* It’s the first year since I’ve had the Meyer Lemon dwarf tree that it’s produced fruit. Hey, maybe they will be edible! One could only hope.

July2015_Lemons

Next is my raised flower bed that I got for last Christmas. My spinach didn’t make it… bummer… but my yellow onions, garlic, chives & basil all are growing well. It’s my first time growing onions and garlic. I hope they survive because I’m really getting into fresh food. I can’t believe how much tastier a recipe is with fresh garlic. I mean, wow! hehe!

July2015_garden

The other thing I’ve been working super hard on is sending out Need a Hug afghans. I love doing this. If you need a hug and have trouble breathing, you email me! goredrider@gmail.com It’s free thanks to some really wonderful and generous donors. Here’s the afghan that I just sent out last week. My current afghan that I’m working on is going to Illinois!

June 2015 Need a Hug Afghan

June 2015 Need a Hug Afghan

I hope everyone is doing well this Summer. *HUGE HUGS* I love hearing from you. Be well! Sign up to follow my blog so you won’t miss any of the exciting things I write… even Klondike’s adventure! YAY!

[2015]

A little bit of fun adventure!

Living On Oxygen for Life

You know that every now in then, we really need something exciting to happen to give us a sense of adventure. I mean, if you’re like me, you spend a bit more time indoors than outdoors. So adventures can often be hard to come by. Don’t get me wrong. I seek out adventures wherever and whenever I can and when my next thrilling adventure presented me with an opportunity, I jumped all over it.

Ok, I’ll be totally honest with you. This adventure isn’t exactly for me. Let me explain what happened… *cue dream sequence* A few years ago, K bought me a new rubber chicken, which I named Klondike, because my previous chicken, Mr. Chicken (God bless his soul!) passed on to the pearly chicken heaven due to a broken neck. Yeah, Rocco got to him. Darn that dog! Klondike is much different, yet so similar to, Mr. Chicken. He’s similar because when you squeeze him, he screams but he’s also different because, Klondike is far more adventureous. If something exciting comes along, he jumps on it. Go Klondike, go! He even wears a crocheted beach hat that I made him! He’s stylin’!

Now, it’s been several years since K and I have been able to go on vacation (usually to the beach!) and Klondike probably is feeling pretty neglected. Poor chicken! When I posted this information on my personal Facebook page, my little sister saw it and commented that she and her husband are planning to go to Paris in a few months. She said to mail Klondike to her and they will take Klondike to Paris and take pictures of him there enjoying a NEW and VERY exciting adventure! Whoa! I was blown away! But, ohmygosh! Klondike needs to go in style… he needs… a beret! I have to crochet him a beret to wear instead of a beach hat in Paris. I mean, it’s PARIS! Not Paris, Texas… we’re talking Paris, France! I toyed with the idea of making him a cape too but I think that’s going a bit too far. After all, I will be 46 years old in a few months. OHMYGOSH! He’s going to need a Passport! haha! Here’s what Klondike looks like:

Roadtripmascot

I have SOOOOO much to tell you all. Updates are going to be coming to you about a bunch of different things. I just wanted to start out with something fun and exciting. I also wanted to leave you with the news that I’m doing well with no major health issues since a few weeks ago. I appreciate those of you who have emailed me with concerns that I’ve gone silent. I get in these funky moods sometimes and they are hard for me to get out of… The Texas heat doesn’t help the problem either but all is good now. I promise! Here’s a list of some of the topics I’ll be blogging about:

  • An Aorta measurement update since the CT Scan.
  • Blackouts
  • Canulas, what kind are available to you.
  • A Need a Hug update… So exciting!
  • My garden progress… I can’t believe I got something to grow!
  • And so much more! Take care of yourself and know that I’m thinking of you. Give yourself a hug today!!! You deserve it! *hug*

    I can’t believe it… but I should have..

    Living On Oxygen for Life

    I use a splitter to connect an oxygen concentrator and a 100 lb liquid oxygen reservoir together to provide me with 6 LPM of oxygen to conserve my liquid oxygen. I have my refill days for my liquid oxygen on Wednesdays. So, on the 3rd of June I had my tanks refilled. For some reason, since then, I had been feeling sluggish, tired, worn down more than usual. I thought maybe Mary, my cat, may have chewed kitty holes in my tubing again. So, I checked my tubing multiple times and there were no holes. Then I checked the green Christmas tree that connects my tubing to the reservoir tank to see if it was screwed on tightly… it was. Figures, right? I mean, it couldn’t have been THAT easy!

    Now, I know it’s been raining like a monsoon here in Texas and it has taken its toll on my breathing but it has stopped raining.. *YAY!* and that couldn’t be the reason since I’ve been staying indoor as much as I’ve needed to be. Was my breathing getting worse? I was really worrying and so was K. I was using my inhaler, taking my diuretics as prescribed but I still felt puffy and so short of breath. It just wasn’t normal for me. I certainly didn’t want to call my PH doctor.

    As my last ditch effort, and almost by fluke of chance while I was filling my portable with liquid oxygen to go to a doctor appointment, I decided to switch the reservoirs (I have two 100 lb tanks) to join with my concentrator. What could hurt, right? When I pulled my tubing off my reservoir to switch them around, I noticed something weird. The one I was about to switch out wasn’t putting out oxygen even though it was almost full. So what that means was that I was only using half of the oxygen I needed for 3 days. Once I connected the other reservoir to the concentrator, I started to breathe much better and now I feel like myself again. I understand now why my sleep, short of breath, and energy level was so bad.

    From now on, I’m going to start checking the flow from both tanks when I get my reservoirs refilled. Equipment can fail and I will be reporting this come Monday so that I can get a replacement.

    In other news, I’ve been crocheting like crazy! I have a box nearly ready to send out to a preteen girl who is awaiting a double lung transplant. I’m including a secret gift that I can’t tell you what it is until after she receives it. I don’t want to spoil the surprise. I have another box about to be sent out to Michelle & then one to Sara. After that, I’ll be trying to finish up my daisy afghan to go to the next recipient, Vincent. I couldn’t do this without the generous donations going to my GoFundMe.com/helpneedahug. Read how you can receive a Need a Hug afghan if you have breathing problems and need a hug.

    I hope you are having a great weekend!!! *hugs*

    May Update 2015

    Living On Oxygen for Life

    You may have heard of all the rain Texas has been getting over, what seems like, the longest month of May in history. Even my garden plants have developed a fungus on the leaves. I’m hoping I can salvage the vegetable garden I’ve put a lot of work on.

    It’s been extremely humid here and that has taken a huge toll on my breathing and energy level… not to mention triggering a number of migraines. When I get this way, I tend to get in a funk. I hate funks! So, if you’ve noticed me being pretty quiet on my blog lately, that’s why. I was getting a bit of the funk. Even the kitchen reno has taken a pause. Yikes! That’s scary!

    But slowly I’m coming back around… that fun, personable, groovy self that you all know and look forward to hearing from, right? haha!

    On May 22, 2015, I had my Pulmonary Hypertension appointment where I was hoodwinked into doing a 6 – minute walk. Darn those doctors!!!! I have no idea how far I walked. I forgot to ask. I walked with 6 LPM of oxygen and still felt really winded. Oh well.. better luck next time, right? I don’t pay much attention to the results anyway. They are way too easy to skew the results. hehe! Even K thinks so. We had a fun discussion about that.

    After the PH appointment, I had my CT Scan on my heart. It was to measure my ascending aorta (my aorta aneurysm — it sounds more dramatic saying aorta aneurysm!). My Cardiologist measured it with a Echocardiogram at 5.1cm late last month, which TOTALLY freaked me out. At 5.5cm, he would order a stint. But, he wanted the CT done because my heart is positioned in a way that it’s difficult to measure.

    I have to tell you that I was pretty stressed over it. I wanted to know the size of it, right NOW! Luckily, with a bunch of people thinking about and praying for me, all has ended much better that I could hope for. Thank you so so so much, y’all! Much love to you! The CT Scan came back with the measurement of 4.3cm which is significantly lower but still considered dilated. My Cardiologist will continue to monitor it annually or semi-annually. It’s just so weird because I don’t have a reason for this aneurysm to happen.

    I did get to go to Oklahoma to see my niece in her first ever dance recital and on the way (I drove alone!), I nearly had ANOTHER blowout with a tire that looked almost brand new. I had to pull off the highway because my van was making a really weird noise. When I looked, I couldn’t see the missing tread because it must have been on the bottom of the tire. That’s got to be Murphy’s Law! Thankfully, I was very close to my sister’s house and my brother-in-law handled it from there. This is a prime example of why we have AAA.com.

    May has been a very trying time interspersed with a bit of joy. Just when we thought everything was going well in the beginning of the month, our heat pump (a/c) died and we had to get it replaced. That was NO FUN! But I did set up a donation GoFundMe account so that I can continue to create and send FREE of all charges crocheted afghans and lapghans to those who have breathing problems. This project has been so important to me. I recently sent out an afghan this month and will be sending out a few more within the next couple of weeks. It really keeps me busy and makes me feel happy to spread joy and comfort to those who need a hug and reminded that we all care about what they are going through. I want them to know that they’re not alone. So check out the Need a Hug tab above to see how you can qualify to receive a special made afghan/lapghan. Or, if you can spread the word about donating to this great cause, please do! www.gofundme.com/HelpNeedaHug. I keep this page updated as much as possible.

    Have a great day everyone!