Our Vacation Experience with Oxygen

Living On Oxygen for Life

Keep in mind as you read this blog post that K and I are very experienced with traveling while loaded down with multi reservoirs of liquid oxygen. We are safe drivers and we take precautions before we head out on the road for vacation to ensure that our vehicle is in what we call, “Vacation Ready” mode. That means we take it to our favorite auto repair mechanic and ask them to look at our vehicle and make sure it’s ready for a road trip. We ask them to take a good look at the tires, brakes, belts, and to change the oil. They fix anything that needs to be fixed because we don’t want to be miles away from home and have car trouble. Thankfully, we have AAA (triple A roadside service) Membership.

Everything we need for vacation, including medical supples.

Everything we need for vacation, including medical supples.

When we plan a vacation, there are a lot of factors that go into the planning. The very most important factor is the location of my DME company in relation to my vacation destination. We also take into consideration whether there are any Lincare’s along the way. For the ones along our route to and from our destination, we could possibly set up a refill for my liquid oxygen reservoirs by asking my local Lincare office to set it up. The Lincare that I stop at for refills have to have the capability to fill liquid reservoirs. Some Lincare companies no longer do liquid oxygen.

This year we decided to find a beach that we’ve never been to before. We love the beach and for the past few vacations, we’ve only tried to rent beach house one other time. The only thing with this house that we rented on the beach was that it was on stilts. We didn’t realize the stairs to the house would be so darn steep. When we finally got the keys and drove the short distance from the office to our rental house, we pulled in and saw the stairs. We brought with us 2 – 100 pound reservoirs of liquid oxygen that weigh about 165 pounds full (but feel like you’re lifting a ton!). It took both of us, with K doing the lifting. I was standing behind him supporting his back with one of my hands pressed hard against him making sure he didn’t fall backwards. By the time we got that tank and the 75 pound reservoir up the stairs and into the house, we decided that the other 100 pound reservoir could stay in the vehichle since it was parked in the shade under the house. We were both sweaty and hot after that. It was so humid.

Oxygen vs. Stairs

We planned an extended vacation this year. My health has been declining. So, we both knew that I would need extra days when we arrived in Alabama and even in-between to adjust to the heat and humidity. It took me 2 days resting off and on before I could get outside and start having fun. K was super kind about not pressuring me to do anything that I didn’t feel like I could do. I arrived at the beach house with a migraine headache because the drive was stressful for me. The first day we drove we stayed overnight at a hotel. We came out the next morning and found one of our tires was flat from a piece of wood embedded into the side wall of the tire. Luckily, K had a tire air compressor in the back of the van and he aired it up enough to take it to a tire shop where he bought a new tire.

Flat Tire

The second day we drove, K stopped to fill the van with gas, it was my turn to drive this time. For some reason, as I was sitting there waiting for K to come back from the bathroom, the fuel light went on but the fuel gauge stayed at full. I don’t know what made me do it but I actually pushed the tripmeter to zero it out. At least I would know how many miles I’ve gone with the gas that I have in the tank. Anyway, the fuel gauge scared me by dropping all the way to EMPTY while K was a sleep. Ten minutes later, the fuel gauge would start raising back up to full and the light would go off. That was creepy scary. I let K drive after that. Apparently, there’s a wiring problem. Ugh!

After I was ready to get out of the beach house, I hit the beach! Even from the wrap around porch of our beach house on one day, we could see a few dolphins swimming off the coast!

It’s easy taking my oxygen to the beach. K had set up a tent with two beach chairs beneath it for me to relax and watch K wade into the water. When I wanted time in the water, K would either carry my portable on his shoulder and hold my hand as we walked into the waves OR he would have me connect my 50ft tubing to my portable and clip my portable to one of the beach chairs that he’d move closer to the shore. I’d bury the feet of the chair in the sand to give it more stability. I’d just need to sit my tank right in the seat with strap clipped to the top of the chair. Perfect! I could walk up to 50ft into the water or just sit on each of the tide.

Dolphins along the coast of Gulf Shores, AL

Dolphins along the coast of Gulf Shores, AL

This is how I sit at the beach under a tent on low beach chairs.

This is how I sit at the beach under a tent on low beach chairs.

Rocco would sit with me while I crocheted on vacation.

Rocco would sit with me while I crocheted on vacation.

We went out to celebrate my 47th birthday and our 24th Anniversary!

We went out to celebrate my 47th birthday and our 24th Anniversary!

We really had a good time on vacation. We didn’t want to come home so soon even though we spent 10 days in the beach house. I think next time we are going to try to stay longer. It all depends on how well my health holds up. *fingers crossed* YAY!

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An Overload of Information to Catch You Up!

Living On Oxygen for Life

Oh my goodness… I have so much to catch you up on. First, let me show you my MacGyver invention that I took to two movies and a trip to see my sisters a few days ago. It enabled me to take both of my portable liquid oxygen tanks and not have to carry them myself.

Going to a 2 hr and 15 min movie with 2 tanks and this cart I invented to carry both tanks.

Going to a 2 hr and 15 min movie with 2 tanks and this cart I invented to carry both tanks.

I put one of the portables in the bucket and strapped the whole thing in my van on the middle bench with the seatbelt. It worked really well! Next thing I need to tell you that my trial with Adempas is over. I didn’t do very well on it. I had a constant headache and my breathing had gotten worse. So, I talked with my doctor and she agreed to stop the medicine. Having Restrictive Lung Disease makes it hard to find Pulmonary Hypertension medicine that my body will tolerate. Right now, I’m back on 62.5mg of Tracleer twice a day.

Christmas was great!! K and I decorated the house again this year. Unfortunately he had to work on his days off but I had the energy to decorate most of the Christmas tree myself since I went slow. It took me a couple of days to get the ornaments on the tree. Here’s a couple of pictures of what we did.

Our 2015 Christmas Tree!

Our 2015 Christmas Tree!

K made our table look great with a live tree from Jackson & Perkins.

K made our table look great with a live tree from Jackson & Perkins.

I had fun crocheting some holly and berries... I turned them into knob ornaments.

I had fun crocheting some holly and berries… I turned them into knob ornaments.

My Mary enjoying the Christmas tree 2015.

My Mary enjoying the Christmas tree 2015.

 

 

 

 

 

 

 

 

 

 

 

 

When I was visiting my sisters a few days ago, we met up at Winstar Casino since it was the most central place to meet. My little sister is the one who went to Paris and she brought me back Klondike! It was good to get him back home but it looks like he is going to be a world traveler because my little sister said they will take him to Germany when they go. Germany!!! How cool is that? They really liked the Shutterfly book I made of all the pictures they took of Klondike in Paris. They texted them to me each day they were there. By doing this, it gave me a chance to travel by proxy to places that I’d never thought I could go. Overseas! Plus, I got a very awesome purse and a beret! Yippee!!

The French Beret I got from my sister!

The French Beret I got from my sister!

I know I’m overloading you with a bunch of information but I can’t stop now! I have more news to tell you! This one is super exciting because I worked all year to accomplish this one. My dwarf Meyer Lemon tree, that I’m growing in a half whiskey barrel, produced 3 whole lemons for the first time ever and it took all year to grow them. I think I’m going to make lemon brownies with a glaze on top. I forget what they are called but I found a yummy Pinterest recipe. The lemons are HUGE!

It took one year to grow these!

It took one year to grow these!

I’m still crocheting Need a Hug afghans. Even though 2015 was pretty rough and my Happy Jar doesn’t have a whole lot of “Happy Moments,” I’m determined to make 2016 a more awesomer year. Yes, I said AWESOMER which is a new word I invented and I’ll say it until it catches on! haha! Have a great year everyone and stay well and warm. Sorry I had to throw everything at you in one blog post. Believe me, I could go on but, I’ll let you digest this post for a bit before I post more. Lots of love and hugs to you all.

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.

2015 Oklahoma Vacation

Living On Oxygen for Life

Sorry all! I know this blog post has been a long time coming but I’ve FINALLY got all my photos from K & my vacation on my computer and uploaded to my blog. Whew! That was a LOT of work. Now that that’s done, let’s get busy discussing! First, I told you in my last blog that we had yet another tire mishap on the way to Oklahoma. The thing that I didn’t mention was that the oxygen concentrator gave out about one hour before we were to leave. Yes, I was a little stressed but I called my Oxygen provider and told them what happened. We needed a replacement concentrator ASAP! Luckily, my driver had a new concentrator in his truck. He was about 40 minutes away but he turned around to drop it off at my house! How awesome!!! Crisis averted! Whew!

We get to Oklahoma and I take all the next day to rest while my van was in an Oklahoma shop getting the falling apart Firestone tire replaced. The next day was my 46th BIRTHDAY and I had just received some AWESOME news! My little sister and her family were going to make it to the party! That means my whole family will be there. Let me explain… it’s so so hard to get everyone together at the same time, on the same day! Most of my family lives in Oklahoma but they are spread out and everyone has kids.. some young as a baby and some old enough to drive. I can’t even express to you how much it meant to me to have them there to celebrate with K and me. I darn near cried. One of my sisters made a special cake. Thank you T!

My 46th Birthday Cake! YARN BALLS!

My 46th Birthday Cake! YARN BALLS!

The party was super fun and I don’t think I laughed so much because my sister who has Klondike was telling us how surprised she was when she received my rubber chicken in the mail. You see, even the slightest of handling of the chicken will make him scream and he’s a wee bit bigger than she imagined. Teeheehee! (I’m still giggling over that! hehehe!) However, they are still going to take him to Paris and show him a good time. In fact, today is the day that his adventure begins. Keep a look out for pictures of him on my blog. Go Klondike Go!

The next day, I had some energy leftover. So, we hopped in my van and took off for the Museum of Osteology. Words don’t do this place justice to describe how intriguing this place is. If you like bones, you’ll love this museum. As you enter the building to pay your entrance fee, to the right, you can look in a window to see beetles cleaning a coyote and a domestic dogs skull. It wasn’t gross like I thought it would be. It was, however, very interesting! Look at what’s inside this museum!

Bones of so many types of animals! 2015

Bones of so many types of animals! 2015

Sunday morning, we went for breakfast at Jimmy’s Egg. I guess that’s like a IHop or a Denny’s. It was good. I had biscuits and gravy, with eggs & bacon. Who doesn’t like bacon, right? *drool* The biscuits and gravy were PERFECT! It makes me want some right now! Yes, I’m hungry. I had to go get my labs today. Anyway, after breakfast and because I ate, I got sleepy. So, we went back to take a nap. After that… we went to Oklahoma City to visit the Oklahoma City National Memorial. We went about 30 minutes before sundown. That way we could take pictures at dusk and then at night when everything was lit up. If you’ve never been here, you should see it at least once. It’s somber but BEAUTIFUL. Go here to read about what happened.

This building holds artifacts from the building.

This building holds artifacts from the building.

OKC National Memorial & Museum 2015

OKC National Memorial & Museum 2015

The chairs represents each person who died in the blast. The smaller chairs are for the children who died and the 5 most western chairs are for those who were outside the building who died.

The chairs represents each person who died in the blast. The smaller chairs are for the children who died and the 5 most western chairs are for those who were outside the building who died.

At night, the chairs light up and are so somber but beautiful.

At night, the chairs light up and are so somber but beautiful.

At night, the lights come on.

At night, the lights come on.

I was able to see the name of one person I knew on the wall of survivors but I couldn’t tell which chair was the one that represents the survivor’s spouse. Losing a family member is hard but to lose a spouse in a terroristic bombing is horrific.

After we got back to my parent’s house, we ordered pizza and watched a movie. We were leaving the next day. I will have to say that our trip to Oklahoma was a blast….even Rocco had fun. Maybe, he had a little too much fun because he scared my parents so badly. They thought they lost Rocco. While we are there, he runs free of a leash like their dogs do. Well, Rocco got sneaky and tricked my parents into thinking he ran away. He was just looking for K. We had to make a run to Walmart and that’s when Rocco thought he lost his daddy (K). So he went looking for him. He showed back up when we pulled into the driveway. Silly dog. Sorry for scaring them though. Yikes!

Stay tune for Klondike’s Big Adventure! He’s on his way to Paris, France now! YAY!!! Be well everyone and FOLLOW my blog! *hugs*

Random Picture Day #13

Living On Oxygen for Life

Hello everyone! Wow… time sure does fly quickly. Doesn’t it? Well, I guess it seems kind of slow if you are snowed under. I hope you have sunshine by now. It’s starting to peek out more and more here in Texas. It is amazing how much a little bit of sunshine can change a person’s mood… from rainy-gloomy-cabin-fever blues to rip-the-doors-off-the-house-and-let-me-at-the-glorious-sunshine happiness. This Winter has been a heck of a roller coaster. So, I guess Spring has sprung and all that sweet sunshine has brought our daffodils up and blooming. That is until someone came by and cut and stole them from our front lawn. K was crushed. All that work and now it’s like he has nothing to show for it. The thing is.. he told me that he would have been happy to give them to whomever wanted a few if he’d just ask for them. K would have felt like someone sweet, other than me… of course *wink*, was going to enjoy them and appreciate his effort. But no… someone stole them. I’m a little worried about the tulips that are starting to come up. As you know, daffodils and tulips, make their appearance once a year in the Spring and they are beautiful. Majestic, really, which makes our next outing plans super exciting. It’s a wheelchair adventure with my new camera I got for Christmas! Thank you Santa!

We are going to a place that is GLORIOUSLY filled with tulips, daffodils, and so many more types of flowers. The last time we went to appreciate the flowers was about 5 years ago. Here’s two pictures that I took there.

tulips

cottage

Taking pictures with my Nikon dslr 5200 camera is something I LOVE doing. It’s something that is easy to do while having to use oxygen. It doesn’t take a lot of energy unless I am having to move about a room like at a wedding reception. I like taking candid, spontaneous pictures of people in the moment instead of posed people in a group picture. But nature, by far, is my favorite to photograph. K has really developed an eye for photography. Sometimes my hands are too shaky because I get tired or my oxygen saturation drops and that gets me frustrated because pictures can blur. So, K will drag the tripod around with us if I end up needing it, we’ll have it handy.

So, what am I really like? You read my blog. Do you wonder… what is she really like in person? Here’s a bit of a weird bio.. I’ll try to add a little bio each time I remember!:

  • I have to say that I am pretty goofy.
  • I’m afraid to tell you that I can be a bit cranky or fussy when I’m tired but who isn’t, right?
  • I read a LOT! I should list the books I’m currently reading or at least, the books I’ve read that I think are good. I get most of my books through Amazon and read them on my Kindle app on my cellphone. Did you know that they have a boat load of free books? Just use the filter to look at the LOWEST cost books first. (you’re welcome for that tip!).. Thank you Thomas K., my Scottish friend! *wink*
  • I’ll only eat spinach in a salad. I love it raw/uncooked!
  • I’ve never been to college but I’ve been to a trade school. (Travel Academy)
  • Daisies are my favorite flowers. There’s something about them with their simple, innocent look.
  • I love my wheelchair and it’s driver (aka: my husband)
  • I believe in training a dog with the reward system versus punishment system.
  • To motivate myself in getting things done that I really DON’T want to do is by rewards (no I’m not a dog! *wink*). Those rewards can be ice cream, ice cream, and maybe some more ice cream.. but if I’m out of the ice cream (watch out!) then I’ll take whatever it takes to make me smile and moving with a pep in my step.

 

Now finally, here’s the part you are waiting for… Ready? My health update… YAY!!!: I did some lab work last week because my Endocrinologist asked me to. Instead of my TSH (thyroid stimulating hormone) being too low, it’s flipped out and gone the other way. Needless to say, since I switched back to Tracleer (bosentan) from Opsumit (macitentan) and started taking Methimazole, it has worked especially well. Unfortunately, it worked too well and I have had to cut back on the Methimazole two weeks ago. I’m thinking that I’ll be off the medicine all together after my next Endocrine appointment at the end of this month. The weird thing is… I asked my Pulmonary Hypertension doctor if they have heard of any other PH patients on Opsumit having the same TSH problems. She said no. That’s why they keep telling me that they think it’s my Cordarone (Amiodarone). Though, Amiodarone, is not a good medicine to be on, it’s the one medicine that I could tolerate when my heart started it’s arrhythmia problems back in 1993. I’ll be going to see my Cardiologist for an Echo and to discuss this more and maybe see what else is out there that can replace Amiodarone. I mean it’s been 20 years. Surely, something better and MUCH more expensive is available by now. Though, Tikosyn was recommended to me as my first option last April but I’m not too thrilled with it. I don’t have A-fib and I’m not ready to subject myself to a new medicine that I’m not at least 75% sure that it’s something that will do more good than harm. I’m just not one of those patients that blindly go where doctors lead me. I read up on everything they suggest.

Stay in touch because I love to hear from you. You can find me on Facebook, Instagram or email: goredrider@gmail.com *HUGS* to you all!

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!