Going the extra mile…

Living On Oxygen for Life

I know I’m a lucky person. I have a husband who loves me and takes care of me in ways that I have no idea that he’s doing it. May 26, 2017 was one of those days.

Last year, K found out that U2 was coming to Dallas, Texas in 2017. It’s rare that they come here and they are one of K’s favorite bands of all time, next to Pink Floyd, of course. So, he asked and then begged and told me how important this concert was to him. He said he’d consider it his birthday AND Christmas present if I’d buy these tickets for him. I’m the CFO (Chief Financial Officer) of this family. Anything spent, that’s over $100, should be cleared through the CFO. That’s what happens when you’re living with someone who is disabled and has to go to the doctor often and take expensive medicine.

I knew how much K wanted to go to this concert and I won’t lie to you and say that I was really excited about going to the concert at first. I hadn’t been to a concert in YEARS. I didn’t know if I’d be able to last through a whole concert. I mean, how long do concerts last nowadays? That question was the most important question we faced going into planning for this night of fun. Yes, I bought the tickets. In fact, for the first time ever, I bought a seat for the disabled and a companion seat ticket. We decided to use my wheelchair.

The closer we got to the date of the concert, I started getting more and more excited. I asked my younger sister how long concerts last and she thought about 3 hours. So, we thought 2 liquid oxygen portables would be enough. We didn’t want to leave before the end of the concert. Two portables would give me about 4 hours of time safely. Though, when you least expect it, things don’t always go as planned. Do they?

On the day of the concert, I dressed up in my retro dress. It took me a while to figure out what shoes to wear and how to tie the belt around my dress. I’m not a fashionista. At all.. but K kept saying that I looked beautiful. So, how could I NOT wear a dress? How sweet of him!

We finally departed our house and drove to the DeathStar (the new Cowboys stadium) and there was a lot of traffic. I whipped out my handicap placard once we got close to the stadium. I told K to slow down and I rolled down my window. Well, I just pressed a button and it rolled down on it’s own. I stuck my head out the window and waved my handicap placard (like I knew what I was doing!) to a cop directing traffic. Yeah, I’m not shy AT ALL. The policeman walked up to my van and I asked him directions on handicap parking. That’s right. We were going in style! We ended up paying just a little extra (ok.. a bit more than I was comfortable with) to park at the building (a sidewalk away) in the handicap. It was right up there near Valet parking. A parking attendant poked his head in K’s window to scope the inside of our van. I don’t think I need to tell you what they were looking for with what happened in Manchester, UK a few days prior. There were police dogs walking the crowd and police with automatic rifles. Texas is serious with security. No purses allowed unless it was no larger than 5″x8″ in size. I actually took my PH International Conference name ID badge that I got in June 2016. It held my ticket, driver’s license, credit card, insurance card and my cellphone. It was the perfect size!

We got in the building and had no idea where to go. However, we quickly found out that if you are arriving in a wheelchair, not only do you jump through the line to enter the building quicker than anyone else. You get some incredibly friendly help from the Event Staff. It was nothing short of AMAZING! We only had to say we weren’t sure where to go and the Event Staff person we asked not only told us where we needed to be but also, TOOK us there personally. It was awesome! I was all smiles and “Thank YOUs!” I have to say the handicap seating was excellent. We were fairly close and not a single person was in front of us.

U2 concert 2017!

Now the scary part. As K would say, we “GROSSLY” underestimated the amount of oxygen we needed for the concert. I use 6LPM of oxygen 24/7 and my 2 portables would last roughly just over 4 hours. It was already 7pm which was when the concert was scheduled to start. It didn’t start until almost 8pm and it was the Lumineers, not U2. K and I talked about what we would do. I told him that I could turn my oxygen down to 5LPM if I just sit here in my wheelchair but I’d have to turn it back up to use the restroom or if I started feeling bad. He had left me for a little bit to find out about souvenir concert shirts. At least that was part of what he was doing. I didn’t realize he was going down to the police or the Event Agent at the door to see if he could later exit the building to refill my oxygen. He said no. He couldn’t let him back in he building if he left. Well that sucks! Right? So, he next went to the fire department personnel and explained our situation to him. He asked if they had oxygen with them and they said not to worry. If we have problems to bring me straight to them and they would help. Wow! (yes, they had oxygen!)

K came back to his seat without even telling me he had setup a backup plan in case we needed it. He even packed a picnic to leave in the van for after the concert in case we were hungry. We had a lot of fun, with my oxygen turned down to 5LPM, I was able to watch the whole concert from start to finish. We even stayed a little longer to watch some of the breakdown of the stage. That was cool too. It was just after 11:30pm when we finally got back to my van but all was well and we had a great time. Quite a number of the event staff and a police officer asked if we had a good time. I’d like to think this kind of hospitality happens everywhere but being Texan, I’m kinda biased. *hugs* haha!

Waiting for the U2 concert… Lumineers will be first!

Lots of love to y’all!

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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.

I’m a genius!!!

Living On Oxygen for Life

I’m a genius! Ok, well, maybe I’m not technically a genius 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!

Better, faster, lasting longer… your portable oxygen system. Don’t we deserve it?

Living On Oxygen for Life

I recently received this comment below about an issue that many… I mean many oxygen users feeling strongly about. Only an oxygen user who uses portable oxygen knows exactly how difficult it is to be active while lugging any form of portable oxygen.

What if there was a way to make these portables lighter and longer lasting? Why isn’t there already any available? Sure, there are the battery powered oxygen concentrators but those batteries don’t last very long and they take a while to recharge. Do we really want to carry around multiple bulky batteries when a battery can be made lighter, smaller and last longer?

What can we, as an oxygen using community, do to further the battery technology and portable systems to become more beneficial for us so that we can lead a more active lifestyle?

Bill wrote this in hopes that we could raise awareness for this much-needed help from the tech world.

“I’m suffering from health issues and I feel like there is some uniquely innovative person who could help. I don’t want money and I really do not want sympathy. I want help solving a special problem….oxygen.

Three years ago I had a health event and since then have required a modest flow of oxygen. Before this I was largely unaware of what it meant to carry a portable oxygen system around. Suddenly, through necessity, I personally became aware of the challenges I faced using these systems. I, like many others, need to carry some form of oxygen with me every moment of every day.

What baffles me the most is that at a time when you’re feeling weaker because of your oxygen deficiency, you’re now saddled with carrying a significant extra weight. There is an array of systems available, but they are all heavy and clumsy. It makes getting around for everyday tasks even harder. I was also surprised at the large number of people using these systems as well as the many that cannot afford help and just suffer silently.

Excessively heavy, and inconsistently reliable power supplies are only a few of the major problems. When combined with clumsy delivery systems it makes for a real challenge.

I have admired the way some have attack problems and find new solutions. I would like someone to take the ball and find a solution to this problem. I know that it would be a great benefit to many people and you’d be giving life and freedom to those of us that are suffering. We need innovation in attacking this problem.

I believe with today’s technology there is no reason the needs for this fast growth health care cannot be improved. As one who will require oxygen for the rest of my life, I ask a small favor. Please take a look at this issue and help us if you can.”

Many people are still using the archaic e-cylinder metal tanks for their portable oxygen system. We, as the oxygen users who are already challenged with our illness, want our independence. Struggling with bulky, heavy portable equipment that may only give us only hours of oxygen does not promote a quality life. It’s frustrating to have to rely on oxygen equipment that could be so much better.

If you know of someone who you can pass this message on to and help solve this problem, you would be helping many people obtain a quality of life they deserve. This is achievable.

Pin this, Facebook this, and Twitter this post. Let’s get this out there.

I am opening this post up for your comments, suggestions, ideas, and ways that we can raise awareness for the need of better portable oxygen delivery systems and lightweight, longer-lasting batteries for portable oxygen. If people can create a computer in a garage, why can’t someone create a better battery for a better oxygen delivery system? Let’s do this for ourselves and better our lives.

A promising day…

Living On Oxygen for Life

Today, I was up and out of bed like a bolt of lightning! I delayed my morning medicine (diuretic pills) to throw myself through the shower and then slapped on some clothes. Then I proceeded to fill my portable oxygen and walked out the door on a mission! I was ready for the day. I was on a mission. That mission was for me to be productive today and so far, it’s going really great! I hopped in my van and pushed my garage door button. I started backing out of the garage when I noticed the garbage bin was in the way. REALLY? ARGH! I grabbed my portable oxygen and hopped out of my van to move the bin. This is something I would never do without oxygen. Pulling a garbage bin up a slight incline can cause problems for me. I get very short of breath from doing something as simple as that if my oxygen wasn’t on. After the bin was moved, I had to rest a minute in the car. Even though I wore my oxygen, I still got a little tired. I drove to my pharmacy and picked up my medicine that was politely waiting for me. The really nice pharmacy tech guy was there. He recognizes me and K because of how wonderfully thoughtful we are about speaking DIRECTLY into the intercom in the drive-thru. Haha! I swear. It’s true. One day he commented that K was the only one who ever speaks into the microphone so that the tech can hear him well. See? I told you K is a wonderful man! How lucky I am!!

After paying for my medicine, I debated on whether or not I felt like going to the grocery store. I know what you are thinking… But you don’t go by yourself to the grocery store… I know, I know. And I did think of that too. I really, REALLY wanted to get some produce and frankly I used the incentive of restocking my ice cream supply *wink* to make me turn my steering wheel towards the grocery store. And what do you know? I did really well. Yes, I got tired but I tried to limit my purchases to the minimum of what I needed. So, the cart wasn’t overly filled. This time I didn’t go to Walmart. Since I knew I was flying solo on this trip to the store and I knew the carts at Walmart are usually defective to the point that they pull to the right or left or that they have a stuck wheel (It never fails, right?), I went to an actual grocery store. Defective carts really wear me out.

Now, you are probably wondering why I don’t just use the battery-powered riding cart (can’t remember what they are actually called!), right? Well, I’m not there yet. I don’t want to even think about having to NEED that kind of cart. Besides, I need the exercise and as long as the cart doesn’t cause too much SOB, I’m ok with a short trip to the store. Now that I’m home and the groceries are put away, I have all day to think of another adventure to do. I bought some blueberries to freeze so that I can make mini blueberry muffins for K. Personally, I think blueberries are yucky but I did get some blackberries because I’ve never tried them before. I’ve never froze blueberries either. My sister places them on a sheet pan and sticks that in the freezers until they are frozen. I hope it works for me.

Don’t forget about the Need a Hug give away. You have until June 30th at midnight to enter. I’ve been receiving entries. So keep them coming! I’ve been thinking about attending the next Pulmonary Hypertension Association Conference which is in 2016 and in Dallas, TX. If all goes well, I will be there.

Oh shoot! I forgot to take my diuretic now that I’m back home. Dangit!

What do you mean 24/7?

Living On Oxygen for Life

I’m trying to think back to how long I’ve used oxygen 24/7. That’s 24 hours a day, 7 days a week. It’s been many, many years. Let me think…It was definitely after I got married. Though I was still on oxygen. I started when I was 17 years old. But, I started using oxygen 24/7 in probably 1993. Ok Wow! That’s 21 years. Yep, I just did the math. It’s amazing, right? This shows us that we really can live a long time even though we need supplemental oxygen. I keep looking at that 21 years and it’s making me smile. All the fun, goofy things I’ve done and all the adventures I’ve been on over these past 21 years have been so crazy fun.

When I say that I use oxygen 24/7, I mean that I’m always using oxygen whether it’s to water my plants outside or taking a shower. I get in a swimming pool, put make up on, clean the house, and basically everything else a person has to do to live and have fun. I don’t worry about being in water with my oxygen on. Water won’t get into the tube. If I’m using my portable and I’m at the beach, I put my portable oxygen tank in a plastic bag. My husband digs a hole in the sand and drops the portable that’s in the bag into the hole and then covers it with a towel. I use a 25 to 50 foot tubing attached to my portable tank and then I wade out into the water! It’s so fun but I have to be really careful to make sure no one else who’s on the beach trips over my tubing. We usually pick a spot on the beach where no one else is around or go to the beach early in the morning or late in the evening. If there are a lot of people on the beach, K will hold my portable, take my hand and walk me out into the ocean so that I can get in the water. I do NOT swim. I’m totally scared of water. I drowned once when I was about 2 years old and I think that has A LOT to do with why I have a massive phobia about water. It’s really inconvenient because I think swimming looks really relaxing. Though, I will float in a blown up tube!

I do take my oxygen off when people are taking my picture but not always. I’m not able to stay off my oxygen for more than a few minutes without really suffering from my oxygen desaturating.

I’ve been so busy lately. K and I are having a few things done on our house and it’s taken up so much of my time that I’ve not been able to blog lately. Hopefully with most of the house projects finished, I will be back in action again on my blog. I do apologize. I have been on Facebook, email, and Instagram because I can write from my phone and iPad. So, I’m still here!

My newest “Need a Hug” giveaway is posted! The deadline to enter for the afghan is June 30th, 2014 at midnight. I hope you will enter! Lots of love to you all!

I want to share this song with you… my friends!