A Long Awaited Update! September/October 2017

Living On Oxygen for Life

Let’s be honest… I’ve missed blogging and I know it’s been since before my birthday (last month) that I’ve posted anything on my blog for you to read. In my defense, the last two months have been incredibly… what’s the word I’m looking for?… trying?…no. Hectic? You could say that. Let’s throw in challenging with a bit of a MacGyver twist and super stressful at times. If you wrap all that up and include my two road trips that I took (one to Oklahoma to see my family & one to South Padre Island for my birthday/25th anniversary), I have to admit, it’s been a pretty awesome adventure.

It all started with my birthday/anniversary vacation that we try to take every year. We both took turns driving down to South Padre Island which took us about 9 hours even while having to stop nearing every two hours (when K was driving) to get out and stretch our legs and walk the dog. Rocco loved sniffing new territory but I hated having to use convenient store or McDonald’s bathrooms. Not just because I never knew what to expect going into one of those things but also because getting in and out of the car and walking to the bathroom now wears me out and makes me short of breath in the worst way. That’s something new.


We made it to Padre and it was overcast but that’s ok because we knew Hurricane Harvey just past by and almost everything was up and running again on the island. Yay for us! Two days after we arrived, a boat washed up on the beach which drew everyone, including the Padre Beach police, to check the boat out. We should have set up a beach chair next to it and charged people for us to take their picture! It took nearly a week for the boat to wash up this far on the beach.


K and I normally go for a nice steak dinner for our anniversary celebration. But who knew that there wasn’t a restaurant on the island, nor close by on the mainland, that sells a good steak? Instead, we had a small party of two at our condo with a gigantic birthday/anniversary cake that K intended to share with the waitstaff had we gone to a restaurant. Thankfully we brought our big ice chest and I had some square foil pans to save the leftover cake to freeze and take home. You better believe that I ate it all once I got home (K had the last piece..darn him!). I LOVE birthday cake!

We really had a lot of fun and took a few goofy pictures. I was even a pirate! Argh! After ten days in Padre, it was time to go home and on the way home, the craziness began. We were north of Austin, Texas when it happened. I was reading and K was driving… thankfully. Our grill from the front of our van broke loose and flew over the hood and smacked our windshield and then continued over the top of the van. It scared us so bad. Thankfully, no one was behind us and we looked but didn’t see it land on the highway. We get home ok and called our mechanic to see what it would cost to get it replaced. $600! Are you kidding me? The thing was made mostly of plastic. K and I had the same idea… look on eBay for the part. K said he could fix it himself and I was, like, “You go Rambo…you get into that MacGyver mode!” Sure enough, it cost us a total of $200 and K attached it with no problems! YAY K!

What K didn’t tell me was that on the way home from Padre was that he was starting to see floaters in his right eye. Then when he went to work, he called his optometrist and they told him to come in RIGHT NOW. He had a detached retina. I was so worried because now he had to have surgery and this was his eyesight!. The first time I went with K to his optometrist, K told me that he had been telling the doctor about me because he has a daughter who has some similar health conditions. Let me tell you that I have no problem that K talked about me. I mean, I blog… so of course I don’t mind. I was really excited about meeting this doctor to learn more if he wanted to talk about it. Naturally, I knew this appointment was about K but I did bring a printed copy of an x-ray showing my scoliosis. This doctor was really neat and very personable. K and I really like him. But what excited me the most was his waiting room. Holy cow… the moment I walked into the building, I was thinking that EVERY waiting room should be like this one. There were crocheted afghans on a blanket rack next to the door and in each waiting area there was a card table with a puzzle to be put together. I immediately zoned in on the puzzle. K knows. I love puzzles and there was an older man sitting there working on the one I noticed. I just blurted out … “Oh yay a puzzle!!!” (I know you’re visualizing that.. aren’t you? haha!) The man heard me and started to get up saying that I could work on it. I told him to please stay and I can work on it with you. I told him that I love puzzles and this reminds me of when I worked on puzzles with my dad. Awww! I know, right? I was so engrossed that I didn’t even hear K’s name called by the nurse. What’s so awesome was that there was ANOTHER puzzle in the waiting room in the back! I was in waiting-room heaven!

K’s surgery went well but I wore myself out having to drive him to appointments and waking up to check to see if he wasn’t sleeping on his back for the first week after surgery. That was stressful but after the first week, he could sleep on his side but NOT on his back. You would think that it wouldn’t be a big deal but people move around while they sleep and K is accustomed to sleeping on his back. So, I had a lot of waking up to do to check on him. With everything that was going on with K, I truly had an eye opening experience about how much he does for me without complaining. He drives me to doctor appointments that are an hour away, he pushes me in a wheelchair when I need it, he takes care of everything in the background when I have migraines, not to mention doing most of the chores and all of the grocery shopping now…and most of this is done without me having to ask. I got a taste of what he does for me when I needed to take care of him for a change. I was definitely humbled and I gained a new appreciation for what he does for me. Not that I never appreciated it but my health is changing faster now, requiring K to do more and I don’t always see what he does for me.

Lots of love to you all! Don’t forget to subscribe to my blog to follow along! Leave a comment too! Have a great day!!!

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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!

Son of a gun and I’ll be dagnabit!!!

Living On Oxygen for Life

Have you ever had something go wrong every time you tried to do one particular thing? I have to say that I’m pretty darn upset and frustrated about it but there is good news… We made it to Oklahoma!!! I’ve been super excited about this trip to see my family. K’s family lives close to us in Texas but mine, well, they live in Oklahoma which means I don’t get to see them as much as I’d like.

So, for my birthday, K decided to take some time off from work to drive me and Rocco to Oklahoma. We had almost made it to our destination when, wouldn’t you know it, another tire (from Firestone!!!) on my van started making the same noise as it did on my solo trip to Oklahoma in May this year. This will make the 3rd brand new Firestone tire to fail on me. The tread is coming off or at least that’s what we think is wrong. K is going to take a closer look at the tire in the morning. I’m just glad K was with me this time.

I was so tired when we got here in Oklahoma. I didn’t want to take my diuretics but knew if I didn’t, I would start to have trouble breathing. My family is really good at going at my speed and letting me decide on what I want to do while I’m here. They know I tire easily and they do whatever is necessary to accommodate my needs. They turn the air conditioner down (shhh…it feels like a meat locker but I can breathe better!) plus, they let K and I come and go as we like. I feel so blessed to have such an understanding family.

I can’t wait until Friday because the whole family is getting together for a combination birthday party for me and one of my parents. It will be so much fun and there will be birthday cake!!! Who doesn’t love birthday cakes?? This year is a special milestone for me and on Friday, I’ll tell you all about it. So, stay tuned in!!

Be well and breathe easier. *hugs*

[2015]

A last minute birthday vacation!

Living On Oxygen for Life

What!?!? Another birthday vacation?? Oh! Don’t worry… I don’t think I’m THAT important. This one is for my husband, K. He really surprised me by requesting this vacation back to New Orleans. Since he is someone who thinks his birthday is just another day (you know how it feel about birthdays!), I was first surprised and then excited!

This roadtrip started out a bit rocky with the preparations to go. I ended up with a migraine 2 days prior to leaving. I required a LOT of serious praying (is there any other kind?) and a lot of extra strength Excedrin. Finally, within hours of leaving for the roadtrip, the headache lifted. Whew!!!

So, here we are in New Orleans about to go on a bus tour. My breathing has been pretty good so far because we are using my wheelchair. I can’t wait to show you some of my pictures!

Random Picture Day #3

iphone 222 iphone 223

Living On Oxygen for Life

It’s Random Picture Day #3!! I love Random Picture Day… don’t you? It’s a way for me to show you my goofy side like what you see in these two pictures. I chose two pictures again this time because.. well.. with only the picture on the right, you’d wonder what the heck I was photographing. Right? Here I am on a road trip once again and I had finally arrived at our destination of Corpus Christi, Texas. As you can see, we brought along the dearly departed Mr. Chicken, our former road trip mascot.. may he rest in peace. Give me a minute.. I’m a little sad.

Ok I’m all better and happy again. We have Klondike now. He’s a good rubber chicken and he never lets us get into trouble while we travel. Wheww! Wouldn’t want that. I couldn’t believe that there was a gaming system in our hotel room! I love my big DSLR camera but it’s a little heavy. I could never give it up because photography is one of my hobbies.

We will be taking Klondike on another adventure in early December to New Orleans once again. Ugh! An eight hour drive… with Rocco, the chihuahua, in the car that’s loaded down with all my stuff. K packs very lightly. He barely needs one suitcase. In fact, he just puts his stuff in my large suitcase. The stuff I take on every road trip is medicine, bipap, o2 concentrator, hose & mask for bipap, extra tubing/canulas, my gadgets, a copy of my medical records (Just in case!), 2 liquid oxygen portables, 2 liquid oxygen reservoirs, and a wheelchair. That’s not counting all the snacks, my purse, my pillows, duct tape and whatever else I can sneak in while K isn’t looking! Hey! I just want to be comfortable! You know? I do, however, take an emergency kit that I make myself. I’ll have to show you a picture of it. I can’t tell you how often it’s come in handy on the road.

I hope your day is full of excitement and adventure! If it’s not yet exciting, then try to find something that excites you! I went to Walmart on Monday (yesterday) and bought a skein of yarn to finish my Infinity Scarf! I was so excited when I finished it! Now on to my next project!

What it takes for us to travel…

loaded van

Living On O2 for Life

Going on vacation takes quite a bit of preparation for us. What you see is the inside of my van. For this particular vacation, it contains our luggage, beach chairs, an oxygen concentrator, 2 100lb liquid oxygen reservoirs full of oxygen, 1 75lb reservoir, an ice chest that you can’t see, a dehumidifier, my wheelchair, my bipap machine and other odd essentials like food for the road, laptop, cameras, travel itinerary, and other gadgets .

We try not to travel with this much oxygen anymore. It can be dangerous but we drive VERY carefully. It’s the other guy that we can not predict. So now, we keep it to a minimum of 1 100lb and 1 75lb reservoir. I’d rather get my oxygen refilled on the road if needed by my DME Lincare.

It’s all worth the effort. We LOVE going on vacation. Like I’ve said before, it gives us the opportunity to build memories that will stay with us always. These memories are special to us.

I just thought y’all would like to see how much goes with us when we hit the road. Plus, I can’t forget to mention that we take our beloved roadtrip mascot of a rubber chicken! *wink*

Follow my blog! I have something new coming up. It’s going to be called “Random pictures of my life on oxygen.” Or something like that. I will post a random picture of me during my life on oxygen. I want to show you that even though you need to use oxygen, life can be fun. I hope you like them. Some of the pictures are NOT glamorous. hehe!

I’m home from vacation!

44-21

Living On Oxygen for Life

I’m back from my vacation and I sure missed you, my loyal followers! I hope you’ve been keeping an eye on the Instagram widget that’s in the right column of my blog because I’ve been sharing with you some of my fun pictures of my vacation! Every year about this time, my husband and I go on a special vacation because it is the week we celebrate my birthday and our wedding anniversary. Yes, you heard me right! I get a whole week of celebrating for my birthday and because our anniversary happens to fall on the day of my birthday (we planned it that way!), our anniversary gets celebrated for a whole week too! My husband is one who feels that birthdays are just another day.. that is, he felt that way until he met me. Birthdays are very very important to me. It’s the day that God decided that there should be someone special placed on Earth to make a difference in someone else’s life and that person is you. That’s right. YOU are special. K (my husband) goes out of his way to make this day very special for me. I’ve fought the LONG hard battle to make it to age 44 and every year I make it to the next birthday is a celebration.

Roadtripmascot

I once asked my previous Pulmonologist the question that no doctor wants to answer. Amazingly, he answered it. I asked him how long he thought I would live. He told me he thought I could live (with all the health problems that I have) to the age of 40 or 45. Here I am at 44 years old and so very excited to see what the next year holds in store for me. So, we are trying to decide what we should do and where we should go (with Klondike, our rubber chicken roadtrip mascot!) to celebrate. Family members will be involved to be sure!

I’m happy I made it to 44 years old but a little scared too. I won’t lie to you about that. My husband is taking my health declining every year very well (or so it seems on the outside). I know it’s hard on him because he is taking on more and more responsibility around the house. He wheels me around in my wheelchair and assists me by making my needs a priority. On vacation, he doesn’t complain about how much we load in and unload out our van when we stop for the night. Trust me. It’s A LOT! This year we decided to make a pitstop in New Orleans!! It was a last minute decision to break up the trip to Destin, Florida. K didn’t know for sure that I would do well with driving 12 hours straight to Destin… with our pup, Rocco, and we’ve never been to New Orleans (which we’ve always wanted to go there! It was AWESOME!).

alligator

neworleans

In New Orleans, I had my first taste of Alligator! It was great! We ate at Pat O’brien’s Restaurant on Bourbon Street. Um… a word about Bourbon Street.. It STINKS! No, really, It stinks bad!!! You can actually smell it before you get there. K pushed me in my wheelchair! Watch out for the horse poop and pee!! hehe!

crabcake

Now you know that when in Destin, so close to fresh seafood, we had to sample some crab cakes, grouper sandwiches, and shrimp. This is a picture of one of two very large, very delicious crab cakes. But I have to admit, my husband makes better. I suppose I’m biased! hehe!

The good thing was that there was a Lincare located in Mary Esther – near Fort Walton Beach area so that I can refill my liquid oxygen tanks. As usual, we go to them so that they can fill the tanks. I try very hard to make it easier on the route drivers because we are disrupting their delivery schedule to their local clients. I know how I would feel if my driver would be late arriving with my needed oxygen. So we make it a point to be on time and get it done as quickly as possible.

Please FOLLOW my blog by entering your email address in the box in right column so that you will be notified when I post new stories, articles, and fun pictures. If you don’t have the Instagram app, you can still click on the picture to see all the pictures I’ve taken! Enjoy your weekend! I plan to post another “IN THE KITCHEN” within the next few days. My sister is coming down this weekend and I’ll be busy playing with my niece but I’ll try to get it posted! Don’t forget to check out my Facebook Page too!