I need advice… and an update.

Living On Oxygen for Life

I’m alive!!! I know… It’s been since November 2018 that I’ve written on my blog. There’s huge reason for that. We all know that the holidays are difficult being that it’s stressful and cold, not to mention, it’s also flu season. So, I stayed indoors a lot. K got me a PUPPY! I love her but she is super energetic and wore me out for the first month. Who am I kidding… she still wears me out but it’s not as bad as it was when we brought her home. FYI: She gets car sick. UGH! For those of you who follow me on Facebook or Instagram know most of this. In fact, if you don’t follow (which is totally ok!), I have a section down on the bottom of the right column of my blog that shows my Facebook and Instagram feed! Yay how convenient, right? No need to have the app!

I also ended up in the hospital in January due to severe shortness of breath and inflammation of my lungs and the doctors couldn’t figure out what caused it. That is so frustrating, am I right? I’m sure you can see me rolling my eyes. haha! When I got home from the hospital, I felt good but a week later, I started feeling worse than when I went into the hospital. You can imagine how nervous and scared I became. Don’t worry though. I put my thinking cap on as well as had a CT Scan with Contrast and a Echocardiogram that showed NO PULMONARY EMBOLISM (Yay!) but it did show that my Left Ventricle Ejection Fraction (LVEF) was 35%. Normal is 55% – 70%. That means my left ventricle (bottom left chamber of my heart) is have a hard time pumping out oxygenated blood to my body. YIKES!

I noticed with my SOB, since my doctor increased my Thyroid medicine, Syntroid, back in November, my breathing became much worse over the course of 2 months time. So, without telling my doctor after I started getting worse again in February, I split the pill in half. I do NOT recommend doing medicine adjustments without discussing it with your doctor. I plan on telling him. Within a weeks time, I started breathing better. K and I started becoming optimistic about my future again. My cardiologist started my on Entresto. He sent my home with samples and asked me to ask my Pulmonary Hypertension doctor to check into any possible interactions it might have with Tracleer/bosentan because he’s not super familiar with Tracleer. It took my PH doctor nearly a week but she gave me the green light to start taking it. I’ve been on it for a week and a half and I think it is causing a moderately annoying side affect of itching on my head, face, shoulders and the back of my neck. So, now I need to call my cardiologist about that. *sigh*

But all of this is NOT what I need advice on. Sorry! I’m getting to it. *grin*

Last Tuesday, I received a phone call from my DME company, Lincare, who services my LIQUID OXYGEN. They told me, as of April 1, 2019, they are stopping all liquid oxygen service. I freaked, even though I was warned by one of my wonderful blog readers, Cindy. Thank you so much Cindy! Lincare gave me the names of 4 companies in my area who still service Liquid Oxygen. One of which I’ve used before years ago and one of them is a Nationwide company called Apria.

What I need help with is: Can any of my readers, who have had experience with Apria, tell me your thoughts of this company. If you have an opinion, please don’t just say that you like them or don’t like them… Please tell me why in the comment section. This could potentially help so many people who use Lincare for their liquid oxygen and have high flow oxygen use that won’t typically benefit well from switching to e-tanks for portability purposes.

To go on vacations, we loved Lincare because they also are a Nationwide company who arranged refilling my liquid oxygen reservoirs at our vacation destinations as long as they had a shop there. Selecting a local company for my future liquid service would definitely make it difficult for any future road trips which is crushing to K. Ok, me too but K REALLY loves the beach!

So, if you can help me with your opinion of Apria, I’d really appreciate it. Thank you so much! *HUGS*

When you least expect it…

Living On Oxygen for Life

Sometimes life throws us a curve ball and how we react to that can really show us how much of a team we are. We’re not just married and love each other; we are all-in through thick and thin with all the rollercoasters and good times that make up our life.

Throughout this year, K has been telling me that he really, really needs a vacation on a beach. He’s experienced an emergency visit to an ER clinic for himself at which time I had to bail on him because I developed a MASSIVE migraine while waiting in the patient room with him. Thank goodness his sister came to our rescue so that I could go home leaving him there alone until she got there. (I felt so guilty!) He’s had to deal with working in 100+ degrees heat over the summer. There’s also been my up and down health with the fact that I could no longer do the chores around the house that I used to do, which meant that K had to do them. That’s not all of it but you get the gist, right? So, yeah, he really needed a beach vacation.

I told K that, with the way our budget looked, we were going to have to get creative about being able to afford going on vacation. I knew he really needed it but I was concerned, not only for the financial aspect, but also I wasn’t sure if I could make the 10-hour drive this year. I didn’t want to say no. He works so hard and does so much for me. Thus, came his idea. Out of the blue he said that he wants my help in selling all his McFarlane action figures on eBay and that’s what we did.

We got incredible lucky with a German buyer who bought 5 really large boxes filled with K’s action figures, earning enough money to pay for the hotel in South Padre Island. We actually earned quite a bit of money! So, everything was looking good for our vacation plans. That is until K mentioned a little problem a week and a half before we were to leave.

K had noticed some floaters in his GOOD eye and he knew that he was suppose to call the Optometrist right away. They got him in the next morning. A few hours later, I got a phone call from K while he was in the doctor’s office, asking me if I had already taken my diuretic. *cue the drama music* Luckily, I was still in bed because it was only 10am. (Hey… I sleep in! Don’t hate me because I can! *wink*) He wanted me to get up *UGH*, get dressed and he was on the way home to pick me up because he needed eye surgery within a few hours. *Wait..what????*

I was freaking out. I was worried about K having to go through surgery again, having enough energy to be in the waiting room, having to run all the prescription pickups, taking care of K after surgery and then of course paying the copay bill of the surgery, the doctor and the anesthesiologist. What worried us the most was the amount of time K was going to have to take off work. Sick leave and vacation pay only covered most of it but it’s the few days that was unpaid that worried us.

We are NOT rich but we just sold a huge amount of K’s action figures and we had that money but that means we had to cancel our anniversary/my birthday vacation that I just reserved. That hurt… In fact, I cried.

But looking back at this whole situation, this whole thing felt like everything aligned just for this moment. Somebody up there was looking out for us. We’re not out of the woods yet but this shows us how well and how much of a team we are.

Not only K and I are a team but also K’s sister and my sisters too. My older sister came down and cooked 2 quiches and a huge pan of lasagna so that I didn’t have to cook. My sisters and mother kept texting me encouraging support to me, which helped a lot. I’ll try to blog more often. You can catch me on my Living on O2 for Life Facebook page or ChristineLovesDaisies Instagram if you have those apps.

So, this is why I’ve been mostly quiet. I don’t like posting things that seem negative or stressful but I wanted to let you know that we’re ok and alive. =o) Lots of love to you all! *hugs* FYI: if you start seeing a lot of floaters in your eyes, that could be from tears in or a detached retina. Get it checked out ASAP (within a few days!)

2017 A Year’s Review…

Living On O2 for Life

Life during 2017 sure has been interesting. K and I have found ourselves confronted with many challenges that mostly were unexpected, which usually is the case for us. However, there were a LOT of good, fun, adventurous times throughout the year for us too. Thank goodness… because we really needed them.

January 2017 started with a visit from BOTH of my sisters at the same time! It was shockingly fabulous because it’s difficult for the both of them to have the same time off with their work schedule and then they’d have to drive down to see me now. I don’t travel well anymore and they are starting to understand that a little better now. It’s one thing for them to know their sister’s health is declining but it’s another thing to actually see it first hand. January brought the gift that I’d been waiting for… Christmas cookies made by my older sister and frosted by me and my sister and decorated (little kid style) by my very adorable niece.

February 2017 brought all kinds of exciting fun planning of my vegetable garden. We tried growing new things this year, like broccoli, squash, and tomatoes. I tried to keep up with the garden but with my health and the Texas heat, it started to get me way too tired just trying to keep it watered. A couple of times, K would tell me to just go inside because he would see me struggling with my breathing. So, he took over the garden for me. He’s my hero!

If you haven’t ever grown your own vegetables, it’s a sight to see and it’s actually very therapeutic. No, really… I swear! In March, the potatoes and our two tomato plants were growing like crazy due to amount of rain we’d keep having! Yay!!

In March, K and I were shopping in Home Depot and my liquid oxygen tank flew out of the cart and landed on the cement. What a scene that was! K was so worried about me but I handled it amazingly well after I realized it still put out oxygen. Whew, right? By the end of March, I was harvesting my first strawberries! Yummy! In fact, K was so interested in my strawberries that he filled two hanging baskets with strawberry plants to grow some of his own. Wow. I’m slowly turning him into a farmer! haha!

In April, K’s Aunts and Uncles came down to visit but stayed with his mom and his aunt here in town. By May, I had a lot of tomatoes I didn’t know what to do with them. I mean, we could only eat so many slices of tomatoes on sandwiches and for salads. So, I looked up on Pinterest how to make homemade tomato sauce. The process was tedious and it felt like it took forever but it sure was a success. I even had to call my mom for advice.

I didn’t get to go to my niece’s recital or birthday party because I can’t drive myself that far alone anymore. It just wears me out being the driver for that long. In between the missed trip to my sister, to the time I got to go see them later in the year, K and I went to 2 concerts. We saw U2 and then we saw Roger Waters (think Pink Floyd). Those concerts were a gift from me to K for his birthday and Christmas of last year. We used my wheelchair and I a bought a cup holder that I could attach to the arm of my wheelchair from Amazon. It was SO handy.. so convenient and affordable! Yay.. we all love affordable, right? Going to the concerts with K reminded me of the old days of dating K. We had a good time dancing, singing and acting goofy back then as we did for these two concerts.

In August, my older sister road the train to my city and drove me in my van to her house. I stayed with her for 10 days and then she drove me home and caught the train home. How sweet was that??? I know, right? I have to admit that I missed K something fierce. After I got home and rested up, K and I went on an adventure to South Padre Island for our 25th anniversary. We hit every art gallery and tried various restaurants and did all kinds of fun things. It was a great 10 days but on the way home, the front grill of my van flew off and went over the top of the van. I’m just thankful that it wasn’t me driving because it sure was scary. We didn’t see where it landed and thankfully no one was behind us. I knew we should have taken Klondike, my rubber chicken (road trip mascot). We got an estimate to replace the grill but it was an outrageous price. K and I had an idea but we didn’t realize that we were both thinking the same thing until we started talking about Plan B. We’d the grill replacement part on Amazon, order it, and K thought he could put it on the van himself. So that’s what we did for so much less! I’m so impressed with K’s skills! Though, he’s not much of a car guy but he can fix simple things. My MacGyver, he was! *wink*

From October up to now has been rough, K has had a lot of trouble with his eyes that scared the ever-lovin’ bejeebers out of us. He’s had to have 2 surgeries and I needed to take care of him while he recovered. It reminded me of just how much he actually does for me with my health needs and all done willingly and without complaint. I’m so lucky. I have to mention that he’s got some great ophthalmologists. One of them has the most awesome waiting room filled with jigsaw puzzles that anyone can work on and even a blanket rack that has CROCHETED afghans! *shock* Wow! K said his doctor wanted to meet me. Apparently, K had been telling him about me and the doctor has a daughter with scoliosis like me. So, without giving names, I’d like to give a shoutout to her! “HEY! If you are reading this, here’s a big hello to you and hoping that you are doing well.” *hugs*

Christmas was great! I got to help K decorate the house with new creative ideas this year. We try to add new ideas every year to the decorations! This year we added 5 wreaths we decorated together, 3 hung in our family room windows and one for two large mirrors we have. I had to go at a really slow pace hanging Christmas bulbs, wrapping ribbon around trees, and creating my 3 wreath masterpieces but we got it all done in about 5 days. Hooray! And now it’s January 2018. We’re ready for a better year. *fingers crossed* We’re already planning some exciting things to look forward to which is how we stay optimistic during the tough times.

You can see the pictures I take if you look in the right column of this blog under the Instagram heading. You don’t need to have an account to see my pictures. I just didn’t add them to this post because it’s already so long.

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!!!

Life isn’t easy… is it?

Living On Oxygen for Life

November 2016

November 2016

Throughout November and December, life was difficult because I was so depressed even though my sisters came for a visit on New Year’s Day. I finally got off of Tikosyn and back on Cordarone. I had to buy it from Turkey because the U.S. doesn’t produce brand name anymore. Don’t worry… I had the approval of my cardiologist, that I’ve seen for about 25 years, to take the Turkey Cordarone. So he knows me pretty well. Now that I’m back on Cordarone, I’ve started feeling more myself, as in my heart has settled down. However, I went through a month of feeling as if I had no motivation and all the Christmas stress was getting me depressed. K was noticing. It was definitely a struggle there for a while. I even stopped crocheting for about a week and a half. *SHOCK!* Whaaaat??? Say it isn’t so! I know, I’m surprised about it too. But don’t worry. I’m back at it and I finished the December Need a Hug afghan and have started January’s afghan! Yay! I still need to get the December afghan in the mail. Ergg… Sorry!

Because my breathing has been worse, I exchanged my 5 liter oxygen concentrator for a 10 liter concentrator that I use with my liquid oxygen. I still use a splitter that I can connect the two (concentrator with the liquid oxygen) to use together to make my liquid oxygen last longer. There’s another reason for upgrading to a 10 liter concentrator. I need a machine that will give me more oxygen for when I need it in the future. Plus, it will make vacations a lot easier because we will only have to travel with one 100lb liquid oxygen reservoir and one 75lb reservoir as well as the 10 liter concentrator. I’m thinking ahead for my future. You may be wondering why I still use my concentrator with the liquid oxygen bled in together. Well, the oxygen concentrator does not put out 100% pure oxygen like the liquid oxygen does. My lungs are very sensitive and they just need a higher concentrated level of oxygen. Plus, using 6L of oxygen from both 100lb reservoirs using the splitter (each on 3 liters) doesn’t last me a whole week. My O2 guy only comes once a week for a refill. I tried just the oxygen concentrator at 6LPM but everyday I slowly started feeling worn out. It’s as if I’d use liquid oxygen on 5L… I could do it but by the end of the day my body would feel weak and my breathing would be much more difficult. Here’s a picture of my splitter.

O2 spltter

O2 spltter

But now for the good news… K and I are planning to go to two concerts!! U2 and Roger Waters! K has been waiting for what seems like forever for U2 to announce a concert date in our area. The really neat thing that’s kicked me out of depression is that K has finally decided to help me do a MAJOR Spring cleaning. It’s not the type of Spring cleaning that you may be thinking of, but it’s more of the kind where you take all the stuff out of every closet and my craft room. We are sifting through all of it and deciding what to throw away, what to donate and what to shred. I have TONS of paper work to shred. We had to get an extra paper shredder so that K could help. The one I already have is slower and shreds less paper at a time. K is parting with his McFarlane action figures and he has a LOT of NHL series 1 thru 12 plus variants. (We are looking for a place to sell them. Most likely below cost.) We’re talking boxes and boxes of dolls. Oops! Did I just say dolls? I mean action figures. *wink* It’s good to get the house uncluttered. It makes me feel like I’m accomplishing something. I work on it everyday and even though it makes me feel exhausted, I don’t want to stop until my house is just the way I want it. Finally!

I plan on blogging more often. So keep coming back! Thanks for reading and stay well. *hugs*

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!

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!!!

A new PH medicine to be added..

Living Oxygen for Life

Well, I’m pretty nervous because I’m going to subject myself to trying another Pulmonary Hypertension medication that’s fairly new. It’s called Adempas. It will be added to the PH medicine that I’m already taking, Tracleer.

It’s so complicated, with all of my health problems, to treat Pulmonary Hypertension. With each PH medicine I try (with the exception to Tracleer at half dose), my body isn’t able to tolerate them because of my scoliosis that created my Restrictive Lung Disease problem.

What’s suppose to help one of my problems creates terrible results for my other problems. I can’t tell you how frustrating it is for K to watch me go through this and not be able to do anything to help make trying new medicines any easier. Spouses go through so much along with the patients. It’s just as heart wrenching and maddening as being the one trying a new medicine, unsure if this is the one to either make me feel me feel better or make me feel so much worse. There is no cure. We can only hope to slow its progression until a cure is found.

So, here I am after my Pulmonary Hypertension doctor appointment today, waiting to hear if the specialty medication application was approved which will probably be some time next week. Then, I’ll find out how much more this will cost me or if I will qualify for Co-Pay assistance. PH medicine does not come cheaply and can only be dispensed from a “Specialty” Pharmcy. Thankfully, my PH doctor has agreed for me to be titrated up on this medicine slower than normal. We’re hoping by going a little slower, I may be able to tolerate this medicine a little more smoothly.

Meanwhile, it’s raining like crazy here. The air is holding on to all that moisture as long as it can to make me suffer, I’m sure! haha! Not to worry! I have ice cream in the freezer. It helps me to survive anything. Probably even a Zombie Apocalypse too! You never know! Don’t doubt the power of ice cream!!! Mwahahaha!

Be well everyone! Have fun with the Trick-or-Treaters. May you actually have “little” kids show up at your door this year. Be safe.

Remember that November is Pulmonary Hypertension Awareness month.

Klondike’s Big Adventure – Last update!

Living On Oxygen for Life and Klondike’s Adventure in Paris

And now what you’ve all been waiting for…!!! Klondike’s final Paris adventure update. My sister and my brother-in-law are home now and they still have Klondike with them. Yes, I miss that little guy (which isn’t quite so little according to my sister!) but I know he must still be having fun! Also according to what my sister has told me about their adventure with taking Klondike along… People were taking pictures of them while my sister was taking pictures of Klondike! Plus, people were trying to photobomb Klondike’s pictures! hahahaha! Apparently, Klondike added a whole new dimension of adventure to their trip. I’m just glad they had an excellent vacation.

Let’s check out the pictures!

Here you see Klondike braving the Space Mountain with my brother-in-law on Saturday in Paris!

Here you see Klondike braving the Space Mountain ride in Disneyland with my brother-in-law on Saturday in Paris! They’re SO brave!

Klondike isn't sure if these are Mickey or Minnie Mouse ears but he looks fashionable!

Klondike isn’t sure if these are Mickey or Minnie Mouse ears but he looks fashionable!

I don’t think you can go wrong with a pair of Mickey ears! (or are those Minnie’s ears?)

Klondike is posing at the Lock Bridge. He looks like he's not too sure why there are locks on the bridge.

Klondike is posing at the Lock Bridge. He looks like he’s not too sure why there are locks on the bridge.

Here is the locks up close on the bridge.

Here are the locks up close on the bridge.

Klondike posing in front of the river Seine in Paris

Klondike posing in front of the river Seine in Paris

The River Seine and the Eiffel Tower in the background. Wow! Klondike is getting around!

The River Seine and the Eiffel Tower in the background. Wow! Klondike is getting around!

Who knew it was Fashion Week in Paris? Good thing Klondike is dressed for it!

Who knew it was Fashion Week in Paris? Good thing Klondike is dressed for it!

Thank you for following along with Klondike in Paris, France. Perhaps he will have another adventure in the future! Yay! Many, many, many thank yous to my little sister and her husband for being so gracious about offering to take Klondike along on their vacation. Be well everyone and have a little adventure of your own! *hugs*

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!

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*

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]

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.

Random Picture Day # 11

Living On Oxygen for Life

Almost every year K takes me on a vacation for my birthday and our anniversary. It’s really a big thing with us. We generally pick somewhere that has a beach. It’s just so relaxing and I love watching K playing in the ocean or the gulf even though it scares me half to death because he wanders out so far. Hey! There’s sharks out there!

In this picture, K devised a way for me to not get too much sun. I get sun poisoning pretty badly because of my heart medicine. I love sitting under the umbrella watching K play and then when I’m ready, filled with energy, I wade out into the water. I have my portable oxygen tank in a plastic bag, attached to the chair. Sometimes, K will dig a hole in the sand and drop the tank that’s in the bag in the hole. He’s my personal MacGyver! I use my 50ft oxygen tubing so that I can reach from my chair out to the water. All I have to do is watch out for other people on the beach if it’s crowded. Another idea I’ve thought of doing with the tubing but haven’t tried it yet is to cover the tubing with sand. Then people can walk on it. K tries to take me out in the early morning or late evening when the temperature isn’t too hot. I last longer at those times.

Do what you can to experience life. This year we aren’t going on vacation because we focused on some home rehab. But there is always next year, right?? =o)

How to play on the beach with oxygen.

How to play on the beach with oxygen.