When unexpected things happen…

Living On Oxygen for Life

I know… I know… It’s been since January of this year since I added a post to my blog. SOoooo much has happened since then. K had surgery on his eyes…. AGAIN, and his momma passed away which had hit us HARD to name a few. I even started a new heart medicine. It’s been a year full of challenges so far but we are taking each challenge head on. Battling them like you would expect us to do. Go team!

Yesterday, (Tuesday) brought us a new challenge or should I say frustration. K and I had a doctor appointment in Dallas that had us getting up at 5:45 IN THE MORNiNG.. Yeah, I know.. Me getting up that early is unheard of. I kid you not. I tend to get insomnia a lot, especially when I have somewhere important to go the next day. So, I don’t get much sleep the night before I have to wake up. K is always telling me, “Go to sleep Chris.” Ugh! I wish I could.

Well, I got up on time. I know, I’m very impressed with myself. I’m even ready to leave on time. WHAT???? Yeah… I’m shocked too. K filled both of my liquid portables for me AND took care of our dogs and cat for me. Awww. I know, right? He’s soooo sweet.

In my van, I have a 75lb liquid oxygen reservoir which was filled on the day before at 1:30pm (Monday) and K went out to the garage to strap the tank in. He also took one of my liquid portables out to my van so I’m only having to carry one portable when I’m ready to leave. He’s thoughtful like that. Well, he came back inside and told me my van reservoir was bone dry. He even led me out to the garage and pulled it out of my van with one hand. I was SO mad. Even though I have 2 portable that would last me 4 1/2 hours on 6LPM which is 2LPM less than my normal 8LPM I usually need, we can not risk driving all the way to Dallas with no backup, my reservoir, which I totally depend on. That means K & I had to cancel my appointment and I just hate doing that.

The inconvenient part of this story is that I called my oxygen provider and told them what happened. They were extremely nice about everything. They agreed with me that the reservoir should not have bled dry within 18 hours of being filled, even if the thing was turned on, which it was (on 6LPM) by no fault of ours. They told me they would bring me a replacement today (Tuesday) because I told them that I missed a doctor appointment this morning in Dallas. They even apologized but they didn’t show up today and I ended up waiting ALL day for them and I was exhausted even with getting a short nap while K waited for the phone call that they were support to make to let us know they were on their way.

So that was my Tuesday. They better show up tomorrow (Wednesday). Grrr…. =o) I just hope I don’t have to wait around all day again. You can count on me calling them first thing in the morning. Being on oxygen 24/7 and not able to function without it makes it a really scary to have things break on me. Thankfully, K is usually with me when we leave the house.

My next post will be good news! YAY! I hope everyone is having a great Summer. It’s scorching hot here (99 – 100 degrees this week) and I’ll be indoors a lot! Have a great day!!!! OH! And Willow, my puppy is just ADORABLE and I love her!! (and Rocco too!)

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 I have a surprise burst of energy…

Living On Oxygen for Life

Happy November everyone! I’ve been busy the past week. For the last 3 days I’ve had a burst of energy. I took advantage of it and did some cooking everyday. I started the first day with my trusty crockpot and cooked 2 whole chickens at once! The peeling & chopping of carrots, garlic cloves, & celery took a while but it was the chicken pickin time that took the longest and wore me out. I saved the broth and cut up the rest of my carrots and celery and put those in the fridge for later.

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The next day, I decided to make a Canadian Bacon and Swiss quiche that my older sister had made for us when K had his eye surgery and she came down to help me. She told me she used the Betty Crocker recipe for Quiche Lorraine but used Canadian Bacon instead. I tweaked that recipe by using 5 eggs and only 1 1/2 cups of heavy whipping cream. Plus I used dehydrated onion flakes. My stomach handles the dehydrated onions better than the fresh onions sautéed. Don’t use pre-shredded Swiss cheese. Get an 8 oz block of Swiss and shred nearly half of it. Prepackaged shredded cheese has an additive in it to keep the cheese from sticking together. The quiche was awesome. I believe the secret ingredient is the 1/8 tsp of cayenne pepper.

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The next day I made homemade chicken noodle soup with the chicken stock from my crockpot. I skimmed off the solid fat from the top of the jellied stock and used about 2 T of it to sauté the carrots and celery that I had already chopped up. I then heated back up the stock to a liquid state in the microwave to strain through a fine mesh strainer. I used the stock plus a 32 oz carton of Swanson’s chicken stock and one can of Swanson’s chicken broth. No water added! It really turned out excellent with egg noodles (thrown in during the last 10 minutes of boiling), salt, pepper, cumin, & thyme.

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Today I was hoping to make something easy I have a recipe from a friend that uses a carrot cake mix and one can of pure pumpkin to make muffins. Sounds yummy! But I feel extra tired today. Boo… I’ve been on such a roll!

I’m freezing half the chicken noodle soup in 2 separate serving sized containers and I already froze the crockpot chicken in 2- 10.3 ounce packages for later when I feel the urge to cook.

I’m starting to think of cooking as what can I make for tonight’s dinner that I can make extra to freeze for the days I’m not up to cooking. Meatloaf is handy, chicken enchiladas or just the meat mixture prepared and froze that can be used for tacos or burritos. Beef tips and gravy freezes well too (see below) and K loves it with rice that we make the night we eat it. On the days that I know we have leftovers to eat for dinner, I’ll sometimes prep a meatloaf to freeze before baking and that way it saves me time and energy when I just don’t have a lot of on bad breathing days.

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So, maybe later I’ll get up from my nap and make those muffins which will be baked in my mini muffin pan OR I’ll make Rice Krispie treats. Either way… yum!

Remember… November is PULMONARY HYPERTENSION AWARENESS MONTH. So, Be Aware for those of us who have PH that we are RARE! For more information about Pulmonary Hypertension go to Pulmonary Hypertension Association Organization

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!)

It’s blazin’ hot here…

Living On O2 for Life

For the past two weeks or so it’s in the upper 90s and in a few days the forecast is 105 degrees. What that means for me is: Stay indoors with the a/c cranked. Well, that’s what I would usually do but life has a way of creating drama. You know, the kind of drama like your “Check Engine Soon” light coming on when I least expected it. Then there’s the strawberry plants that stopped producing! What? I know… I was nearly devastated. haha! There’s more drama that happened but I don’t want to bore you. I want to tell you about the fun stuff!

K and I were fortunate enough to be able to visit with one of my cousins and her family while they were here with their church. There was a choir event that we went to and wow were the kid who sang good! We had a great time catching up. I hadn’t seen them in over 18 years.

You know from the last post that I’m slowly increasing my experience in yeast bread. Well… I experimented with making Honey Oatmeal Wheat rolls. Unfortunately, K doesn’t like wheat or oatmeal in his bread. Lesson learned! So, I shared them with his mother. See picture in the right column under Instagram. If you scroll down you’ll see them. It was a lot of fun! We also ate our first two ears of corn that K grew. Our experiment with growing corn has been successful thus far. We have 7 more ears left growing from a separate, later planted seeds. Whew.. they were delicious and I hope we plant more next year. I’m making quite the farmer out of my man. I’m SO proud!

Unfortunately, one of our pond goldfish kicked the bucket. He was floating belly up one day and we still don’t know why or what caused it. Rest in peace little man… But, we still have 7 left… so… HOORAY Goldfish! haha! My newest Need a Hug afghan is coming along nicely. I already have the recipient in mind to ship it to. I’m hoping to get it finished within a month. *fingers crossed*

This past week has been terribly hot and humid. It’s been trying to rain but in our area it’s only coming down in the lightest sprinkle occasionally which is making it HARD for me to breathe and tired a lot. I want to try to get that yummy Cinnamon Swirl Bread made today. K said, “Double to the cinnamon swirl!” So, if I’m not too tired, I’ll make it today and increase the swirl! haha! I’m going to share half of it with K’s mom. She really liked my first loaf. YAY!

Be well and be careful with this heat. *hugs*

The Weekend with Company

Living On Oxygen for Life

I had my older sister and her family in town for a visit this last weekend and had a great time. However, I could tell almost right away that my health has drastically changed since the last time they visited. It was a real eye-opener for me and quite discouraging too.

Thankfully, I was already in the habit of preparing in advance a meal or two to be able to pull out of the fridge or freezer and heat up. Mostly, these were for dinner. I have found this to be extremely time and energy efficient for me. Well, really, for everyone. My sister now knows that I can’t help her much in the kitchen and still have energy to talk with her. I get pretty short of breath. So, after dinner, she would have me go sit down and she would take over to clean the whole kitchen.

One thing I’ve learned about both of my sisters is that when they do something at my house for me, it’s because they want to. Mainly because they don’t want me to wear myself out just because they are there to visit and because they actually WANT to do it.

It’s just like my older sister to bring me her special Christmas cookies as part of my Christmas gift from her. Before I was even able to get one, everyone started eating them. I was like… Heeeyyyy… *pout* They are that good. I was willing to share but gee wiz. So, she went to the store to buy all the ingredients that I didn’t already have to make another batch for me. Yay!!! As she’s whipping up another batch of sugar cookie dough, I was amazed at how easy it was for her and she wasn’t even tired! I had to go sit down after a little bit of watching, help with cleaning, and holding the cookie pans so that my niece and sister could place the cookies on each pan. I helped Frost some too but my niece did all of the Sprinkles artwork!

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After they left for home, I was so tired but I had stuff to do Monday and we ended up having to take Rocco to the vet on Tuesday because he tweaked his back and we wanted to make sure he hadn’t damaged anything. He’s going to be ok. No jumping for a while.

So, today is recovery day. I’m resting all of today. I already told K not to even ask me to do anything or go anywhere because I just needed one whole day of quiet rest. I’m going to post the recipe of one of the dinners I premade for my sister’s visit in case you want to try it. It will be under the In the Kitchen link of my blog’s menu. Beef Tips is what I made and my sister asked for the recipe. I’ll try to get my enchiladas recipe on here too but I’ll do that in a few days. Take care everyone.

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.