UPDATE: Meeting Challenges Head On…

I’ve been wanting to talk about this subject for a time now. It’s made me feel quite overwhelmed. Life, lately, especially the past few weeks has felt chaotic. I got the results of my Annual Physical labwork back… my creatinine was off, my TSH was off and even my Iron was off. What does that mean? Adjust medication and retest the labwork. Ugh. 

I had a good talk with my doctors and the subject of Home Health (Physical & Occupational Therapy as well as Social Worker) was brought up again. This time, we were interested in getting the information to see what I qualify for and also to plan for the future. My health will decline more and it’s better to be prepared. It NEVER hurts to find out what’s available so that you can plan for the future. Better to be prepared than to be in the position where you need it immediately and not know what to do. 

Trust me. Since this is all new to K and me, getting all this information so fast is a bit overwhelming and slightly stressful. However, I’m handling it the best I can and I’m trying my best to stay optimistic throughout this new phase of my health adventure. When I feel down, I think of the roadtrip we’re going on soon to see my family. They always are a joy to see. 

One sister is throwing me a birthday party and the other took my rubber chicken, Birdee, to Cozumel! So how can I NOT be happy when I have a great support system. K has done all he can to help me cope with the changes in my health. He knows my life is hard but we do/change things to try to make it easier.

Taking a shower to wash my hair is ridiculously hard for me to do. If you are familiar with a Bipap and it’s mask that needs to be worn to use the machine, then you know that to wear the mask, you need the head gear to hold it in place. It’s the same thing to use a Trilogy machine. For me, I can’t take a shower without using my Trilogy machine. I want to stay as independent for as long as I can, so I invented a mouthpiece to use by putting together odds and ends of medical accessories. LOL! Even using this, it’s still hard because, to wash my hair, it uses a lot of upper body strength that I’m losing due to my cardiac and respiratory conditions. But, at least the head gear isn’t in my way of washing my hair with my new fandangle apparatus! Crazy awesome, isn’t it???

I don’t shower unless K is home in case he needs to help me out. If I’m in the shower, he stays in the house so he can hear me shout out if I need him. When the water is turned off, he asks if I’m ok. He’ll even help me get dried off or dressed if I need extra help but I’d rather do it myself to give me a sense of independence. The first couple of times I needed him were scary because I started turning bluish gray. Not sure who was more nervous about that between K and myself. I’m constantly thinking of different ways to do things that are hard for me. I have a 10ft hose that I use with my Trilogy. The DME only gave me a 6ft hose which was ridiculous because how was I to be able to park my Trilogy in my kitchen and fix dinner while just using 6 feet of hose to move around? So I got a 10ft hose from Amazon and presto, I became mobile! Much better.

So this week has been incredibly challenging for me. I’ve been so stressed out with people coming over doing evaluations and setting up appointments. I’m not used to so many people coming into my home. Every time someone comes over, I have to lock my pups in a room which of course makes me short of breath. But I’m going to give this Physical/Occupational therapy a try in hopes they can help increase my endurance and maintain, or even improve, the level of my health. Tomorrow, Saturday, is the first day this week that I don’t have to get up early or expect anyone to show up. This girl is sleeping in! I’m just so tired. *snore* Oh hey! Where was I? Oh, yeah….

Eventually, I’ll need care that’s not covered by insurance. It’s better to research that now than to be uninformed when that time comes. 

Not to worry though, I am resilient and I’m excited to see my family and I wonder who will be taking Birdee on her next World Traveler Adventure. One person has volunteered already but I don’t know when that vacation will be. So, I’ll let you know when I know! All I know is that my sister said she got some strange looks from a few people but she didn’t care because she was doing this for me. Awww…. *BIG HEART EMOJIS*

I hope all is well in your life. =o) Just to give you a heads up, I’m turning my blog into a ebook that will be in chronological order!! How exciting is that? I want it to be done with it by the holidays. YAY! *hugs* to you all!

A Bit of FUN!

It’s been a fun week of adventuring for my awesome rubber chicken! I’ve decided to change her title to a WORLD TRAVELER MASCOT. Birdee is my newest rubber chicken because, may he rest in peace, Klondike passed away from a broken neck. However, while he was with us, he sure had fun in France, Germany and a few other locations in the USA!

Since I can no longer travel like I use to, people are lining up to take Birdee on her next adventure! Lucky bird! Honestly, I’m excited about it as much as Birdee is! I have to finish crocheting her new backpack to get it ready for her next adventure. I’ll have to “renew” her passport too. *wink*

Over the past week, she had her first international flight to Cozumel! You’re probably wondering why I have a rubber chicken, that acts as a “Flat Stanley,” if you will. It makes me feel like I’m experiencing the vacation in a small way. It just works well for me… trust me. It also gives me great joy to see all the pictures coming in from Birdee’s vacation adventure. My husband bought my first rubber chicken YEARS ago and I named it Poke. So, it all started with Poke and the roadtrip mascot was born.

This time, my sister volunteered to take Birdee to Cozumel. She’s not shy about carrying a rubber chicken around with her in public. Sometimes, she stuffs my rubber chicken in a backpack to carry around but that’s ok! What an awesome sister, right?? BIG *HEARTS* to her! Especially since every time Birdee is squeezed, she screams REALLY LOUDLY. lol!

Birdee experienced some daring and exciting things: Flying in an airplane, boating, scuba diving and then got seasick. Poor Birdee. I hope she feels better soon! Below is a slide show of the pictures of her big adventure. I hope you like them and put a big smile on your face as it did mine.

Next post will I will be updating you on what’s going on with me health wise. It’s been a little overwhelming. So that’s why I haven’t posted about it yet. However, I think I’m ready to discuss it now. *big hugs* I hope you are dealing with the heat safely. Don’t forget it’s almost time for a Flu Shot! Yay? lol!

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  Birdee has arrived in Cozumel! Birdee has just arrived in Cozumel and seen the ocean and beach! She is my World Traveler Mascot. Thanks Birdee for going places I can not go!

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  Birdee looks a little anxious trying on the scuba gear that looks way too big for her.

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  The Captain allow Birdee to steer the boat! Whoa what a cool captain!

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  My sister diving with Birdee! Wow what an adventure!!!

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  Birdee is totally amazed with all the coral and look at that huge lobster!!

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  Birdee said “squawk” (that’s HELLO in Birdee speak!) to the big turtle!

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  Birdee really close to that shark. Now what????

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  I think Birdee was trying to float away from the shark who’s in the background.

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  Uh oh! Birdee might have had too much fun. She sure got seasick… Poor thing.

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  Ohmygoodness! Birdee!! You naughty chicken! Eating some of the birthday girl’s cake. I’m sure she was just trying to celebrate with her.

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  K and my tradition for our anniversary and my birthday. My sister did this for me because I can’t get to a beach this year. Love her so much!

The Next Step

My life has changed since I returned home from vacation. It has been very challenging. It crept up on me. I don’t think I did anything wrong to make everything change. I knew this was coming but I didn’t think it would be so abrupt.

I went from sleeping and napping with my Bipap, to needing my Bipap to drive down to South Padre where we vacationed. While on vacation, I used my Bipap when I made dinner. When I saw a Neuromuscular doctor during the Summer, the doctor suggested a Trilogy machine. At the time, I didn’t think I was ready for that but when I returned home from vacation, I was thinking differently.

I started out using a spare Bipap machine in our family room when I was sitting to watch tv during awake time. I would take it off to make dinner and clean the kitchen. While in the kitchen, I would have trouble breathing. I got short of breath and had to take breaks with my Bipap on. I was exhausted when I finished cooking and cleaning up dinner dishes. I really started to struggle as the next couple of months went by. It wasn’t until I was in the bathroom and had to call for my husband to come help me out of the shower.

Having to need K to help me out of the shower was scary for both of us. My skin was turning grayish blue and I was desperate to get back to my Bipap machine. I had my oxygen at 10LPM and that still wasn’t enough. I went from 8LPM to 10LPM within 2 months time.

Because of this rapid change in my breathing, I decided to go ahead and get the ball rolling on getting me a Trilogy machine. I have it now. It’s a little awkward having to need to wear the mask all the time. Since the respiratory tech didn’t have the hose and mask that I wanted, I use the same mask & 10ft hose as the ones I used with my Bipap. The ten foot hose is handy when I want to park my Trilogy-on-wheels in a central location of my kitchen. This allows me to walk all over the place in the kitchen, dining room and into the laundry room. It’s weird wearing my Bipap mask all the time and being connected to a machine on a IV-like pole that has wheels. I’m just glad that most of my house has wood and tile flooring. Rolling it on a rug take more effort and tires me.

So, now I get to look glamorous! I pretend I’m acting as if I’m doing a Mars exploration experiment. Earth is Mars! The Trilogy is part of my space suit equipment! haha!

Using this machine is not difficult. It’s just requires me to figure out how to do things differently. Now I’m having to drag around a pole and try hard not to get my canula twisted around it or myself wrapped up in tubing. The pole is pretty darn sturdy but having the oxygen tubing attached to the machine wasn’t working for me. So, I moved it back to my mask’s oxygen bleed-in tube. You can see it in the picture shown below.

My biggest hurdle right now is trying to figure out how to wash my hair. I can’t be in the shower without the trilogy on and the trilogy can’t get moisture inside it. I can’t shower with just oxygen on anymore. The last time I tried it was a disaster. Ugh! I got as far as washing my hair and I had to get out. *cue K running to help me*

I would like to hear from the people who use a Trilogy full time. How do you manage to wash your hair if you can’t take this mask off? If I can’t figure it out, I’m going to have to ask for help from K and I don’t want to add one more thing to his growing list of things to do. I want to be as independent as possible.

I had my first outing with my trilogy machine. We now have a lot of stuff hanging off my wheelchair. Two oxygen portables hang off the handle bars and the trilogy sits in my lap because we haven’t figured out a better way to transport it without K having to carry it. Leaving the house wearing it was awkward. I internally gave myself a pep talk once we exited our vehicle. People stare. I know that and it’s fine with me. I am still in that stage where I’m accepting this new phase of my life. I’m doing ok with it. It makes my life a little easier in the ways that I need it to. So, I’m thankful.

What matters is that I’m still alive and I can still smile. It’s hard to eat with this on and I have to use a straw to drink from a cup. But, hey! I’m still alive!!!! Hooray!


Trilogy Evo Machine

My new life’s adventure.

We went on vacation!!! FINALLY!

Prepare yourself for a LONG read with pictures. 😉

It all began the day before we left for South Padre. You see, we have a cute waterfall pond that’s filled about 8 goldfish. On that day, the pond pump decided to quit working. So, off to Lowe’s K went. It was a good thing that the pump died because K decided to check out the Inverters that Lowe’s had available. When he found them, he FaceTimed me to check the voltage & amps/watts my Bipap runs on. He bought one so that I could use my bipap while in the van!   

Our vacation was pretty adventurous from the very beginning. It first started with my oxygen reservoir we keep in our van for car rides. It decided to start leaking oxygen when we got there. We called Life Support-Dallas, who services my oxygen needs, and K and Eddie (Life Support) walked through through on FaceTime trying to fix it. Well, K did everything right but when he poured hot water on the chunk of ice that was around the leak, the hose snapped off. All the liquid oxygen bled out. See what happened! (Large video 30mb) https://livingono2forlife.files.wordpress.com/2022/10/img_2536.mp4

Naturally we scrambled to calculate how much oxygen I had left and how many refills my portables can use from one of my 2 100lb reservoirs in the condo before we had to go home. Yikes. That was interesting. One of my tall reservoirs can fill both portables 12 times. Then we worried about the hurricane and which direction it was going to go. We made the decision to leave early if it came our way. Plus, we decided, when both reservoirs got down to 1/4 full, we would start for home since we no longer had my van reservoir to drive home on. 

The next day, I asked K if he wanted me to tie a string around his glasses with a little duct tape (I never leave home without duct tape!). He said no because he didn’t want to look like a hill billy. Lol! 30 minutes later, he came back all upset because he lost his glasses in the Gulf. Men and their stubbornness… Am I right ? Lol! Ok so we scrambled to find an optometrist in the area who would see him the next day (Sunday). The doctor turned out to be super nice. We got a prescription and emailed it to K’s eye doctor where we get our glasses made. His glasses are super complex. All the bells and whistles on it. *rolling my eyes* So, his glasses are in the works while we wereon vacation. YAY!

Next, K get stung by a Blue Button jelly fish. My Go-Bag to the rescue again with Medical supplies this time. He’s fine. No real damage to report on that other than slight swelling. Wheww! I was like, Dude… don’t even say… “What could happen next.” Seriously, with his vacation track record.. I was fearing the worst! Well, the drama calmed down and we had a good time. He went to the beach every day and walked the dogs a bunch. Willow became our beach dog who chased the little hermit crabs and seagulls. Neither dog wanted anything to do with the water which was ok with me.

The water heater in the condo was not functioning properly. We had lukewarm showers and I had to heat water to hand wash the dishes (no diswasher). The night K lost his glasses in the Gulf, he went down with a flashlight to look for them along the water and found a $500 boombox bluetooth speaker system floating in the water! Wow! He was all excited. I posted information on Facebook in the SouthPadre Concierge and no one claimed it. K brought it home with us.

We went to the Fire Station to check out the Mobi-chairs (wheelchair for the beach that has large fat tires!) that we could’ve checked out for free to help me get down to the beach. However, we tried my wheelchair down the boardwalk to the sand, parked it at the end, and I could walk the rest of the way slowly. So, we didn’t need the Mobi-chair. It’s nice to have one available for free if I needed one though. The fire fighters were super nice and said they had oxygen if I needed it. I don’t think they realize just how much oxygen I use even though we told them 8lpm 24/7. *shrug* =o)

We went down to the Jetties where the shipping channel is. We watched the surfers catch a few of the higher waves that the hurricane had caused. We had a few red flag days there at the end for the water danger. That is where K went for a walk down the rocks of the jetty and found a turtle stuck head down between two massive rocks. Poor thing. We tried to let people know who where there but they all said not to touch it.. talk of big fines.. blah blah blah. So, he came and told me and we looked up the Sea Turtle Rescue place that we visited the day before and got them to come out to get the turtle out.

K got to name him Jagger (after Mick Jagger, of course!). They wouldn’t let him name him after Mike Modano (Dallas Stars!). We went back a few days later and checked on Jagger. He was doing well. Hope to watch his release on Facebook when the time comes. Every Friday and Saturday night we would go out on our patio when it got dark and a restaurant would set off fireworks that lasted about 5 mins. It was great! 

We had a great time. I felt a little weird driving with my Bipap on. I’m just glad that K had to go to Lowe’s before we left for vacation because he found the inverter I could use to plug in my Bipap and use in the van. I don’t think I would have made it there and back without the use of my Bipap during the drive. My breathing has become very challenging now. I use a Bipap almost all day and night now. 

[Health Update] I am going to contact my Sleep Lab doctor to get the ball rolling on getting me the more advanced machine called Trilogy. It can run on batteries or be plugged in and it’s mobile. I could use it anywhere in the house or in the car. It’s time to take that next step. K is slowly adjusting to my new health limitations. I’m proud of him because I know this isn’t easy for him at all. I just had my Telehealth visit with my Pulmonary Hypertension doctor. Everything we are doing is right. It’s just with age and progression of my limited ability to breathe, I’m happy that my heart is holding up as well as it has been. My lung volume has dropped. So, using the Bipap as much as I do now will keep the CO2 at a lower level. My next step will be getting an Echocardiogram (for internal blood pressures & chamber sizes) and a CT Scan on my ascending aorta aneurysm. I’m not a surgical candidate for fixing the aneurysm. There’s nothing they can do for it … just monitor it. It’s definitely past their criteria for surgical intervention. I am worried about it but I can’t spend my life worried about it. Just keep living life as much as possible and fill it with fun things to do.

I hope you all are doing well. Here’s a few pictures we took. We went on a painted turtle scavenger hunt!

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Whew! Have I got a lot to unload!

It has been an amazing month off doctor appointment after doctor appointment after… well you get it. We were busy. After the cardiologist appointments in May, I went back to my PCP (primary care physician) to update him.  We decided against the Prevnar shot again. YAY! However, I did tell him that I have a few more appointments lined up. 

Before we went to another doctor appointment, we went to see my FAMILY!!! K & my older sister pulled off a great surprise for me. Awwww…. I know, right? Since I use 8LPM 24/7 and I can only take one of my large liquid reservoirs & my 75lb liquid reservoirs in my van, my sister found me a loaner 10L oxygen concentrator. That way I can use the 10L concentrator set on 6L and my liquid oxygen on 3L. When I’m traveling on vacation, I tend to need more oxygen. I get tired more easily. Bummer, I know. 

While at my sister’s house, I visited with family, my high school best friend-for-life, our family friend (who I consider a sister– she’s just so awesome!), and there was a niece birthday party (her little friends included!). Not only that… K cooked an awesome dinner for everyone. Uh… YUM! There were homemade crab cakes involved. Delicious! 

I finally got to see my niece’s horse. Our little barrel racer has her own horse now. I’m so proud of her. After all of this and keeping up with our 2 dogs we travel with, we headed home which gave me 2 days to rest before I had another doctor appointment. I was wiped out!

This next doctor is the one who monitors my Bipap use. I explained that it just doesn’t feel like it’s enough for me anymore. We decided to up the pressures because everything on the Bipap memory card looked great. So, that’s what I did and I gotta tell you.. it’s like night and day difference for me. Instead of feeling claustrophobic or not getting enough air, now I feel as if my lungs truly have it much easier to breathe and rest while using my Bipap. 

I also had a PFT. My Pulmonary Function Test result wasn’t great but that was to be expect. I could only do 2 parts of the test because the 3rd part required me to remove my oxygen too long. In fact, the tech had to take my oxygen saturation after I did the first part. It was rough but I powered through it. My lung volume is 16% of a person my age, size and weigh. Thanks Scoliosis! Grrr… 😉

The most exciting doctor we went to see for the first time is a Neuromuscular doctor who see patients who have MS or paralyzed and need ventilation. This doctor was SO amazing that my husband really likes her. Seriously, that’s a huge deal! We went to see this doctor for a consult on either my current or future use of a Trilogy. We had a ton of questions but we came up with an idea. I have a spare Bipap machine that I can setup in my family room to use during the day when I feel like I’m struggling to breathe or need a rest. My hope is to stay out of bed more often because that’s where I use my main Bipap when I sleep, power nap or just rest reading. This is what I’m going to try first. If this isn’t enough, we got back to the drawing board and consider a Trilogy.

This is my older Bipap that I have set up for use in my family room. K has really taken to this idea. In fact, he is encouraging me to set it up and use it. He got me a larger side table for it and an extension cord to use so that I can use a 10ft hose with my mask. That way I can sit at my chair to watch TV or play on my computer!

Though it is another decline in my health but we are taking this one amazingly well. K better than I am. I did have a brief cry over it. Then I mentally slapped myself and powered through it. I hope everyone is surviving the heat. It’s been extremely hot out here. So take care and if you HAVE to get out, take water with you. 

Coming together in a time of need in our house.

Living On Oxygen for Life

You probably are thinking this post is about the horrible Coronavirus that is going around and maybe it is a little bit. However, that’s not my main focus here because I’m sure we are all needing something else to occupy our minds for a little while. So, while this post may seem a little scary, I truly feel it can be uplifting as well.

Let me start at the beginning and tell you what has happened here in our house. It all started on January 14th, 2020. K and I were getting in the car about to drive off to select the vanity top stone to complete our bathroom renovation. Remember that little pipe leak we had last August 2019? Well, it still hadn’t been finished yet by January. We had turned the whole situation into a bathroom remodel and it prolonged the project. What a chore that was. =o) Anyway, as K got into the driver’s seat of our car, he just suddenly leaned his head on the steering wheel and then started looking around. He told me that something wasn’t right and that he was starting to feel dizzy and the world was spinning. At first, I thought it was just low blood sugar. I encouraged him to go back in the house and eat something. K is a man who will power through any illness. He’s a tough cookie and he doesn’t complain unless something really serious is happening. So, yes, this was scaring me.

K ate a donut and drank a little soda (I know, not the food I was hoping he’d pick to eat) and he decided we could still go to the stone place but I would drive. He did NOT tell me how he felt other than he was “fine.” We were in the stone shop and we picked out the stone that we wanted as our vanity top but I was watching him the whole time. It was apparent that he was NOT “fine.” So many things were going through my head. A lot of self-doubt. How am I going to be able to care for him? How was I going to drive him everywhere? What about his job? Are we going to be financially ok? PLEASE, PLEASE God let him be ok. I was in panic mode. I had not prepared myself to be the caretaker of both of us. Maybe it’s just a short bout of something but I was wrong.

I called my sister right away. She’s a PA and she thought it sounded like he was experiencing Positional Vertigo. She recommended doing some Vertigo excerises (Epley Maneuver) that I looked up on YouTube. Meanwhile I got him an appointment with our family doctor asap who diagnosed him with the same thing as what my sister thought it was and recommended the same home therapy. It didn’t help and he was walking as if he was on a ship at high sea, holding the wall to walk. He would lie on the couch holding his head. Every person is different with Vertigo. Some recover quickly. Some have it for a long time. The doctor, at first, thought he would be better in a week or two. He wasn’t. Paperwork had to be filled out to get him a leave from work and for the short term disability that we had luckily purchased (HIGHLY RECOMMEND!).

So after nearly a couple of weeks, he was referred to a Physical Therapist. I was still driving him around. I was exhausted. I had done more things in that time period physically than I had in a long time. However, he was starting to show signs of improvement.

He was home for six months from Vertigo. In a twisted way, it was somewhat of a blessing. With Covid just ramping up, he was home with me. It was the longest time we’ve ever spent together and it taught me a lot of patience and strength. He has been my strength when I needed it but I found that I could rise to the challenge of the occasion when called upon. It was stressful and so not easy but we learned a lot about our strength together as a team.

He’s doing so much better now for which I’m vastly thankful for. I kept thinking in my mind that it was suppose to only be my body that falls apart. However, everyone gets old and bodies wear down over time. I just wasn’t ready for his to trip me up. It was shocking. Life happens. God was watching out for us.

Life Has Changed!

An opportunity has come along and I’m grabbing it with all I’ve got to give myself a chance at some fun and excitement.

Everyone knows how bad Covid has been. I’ve been stuck in my house for over a year and I’m finally starting to get out in the public. Having Pulmonary Hypertension along with other breathing and heart issues, K and I have taken this Covid19 seriously. That means, I didn’t leave my house unless it was for my monthly labs. Even at the height of Covid19 lockdown, my doctors had me only going every other month for labs instead of monthly. Naturally, that’s when my lab results started to look concerning. So back to every month I went. I finally got smart and made appointments for the lab work. Less waiting around.

Now I have an exciting event to go to this year. My little sister is getting married!!! She wanted me to be the Matron-of-Honor but I had to pass the torch of to another one of our sisters. The stress of being involved in the wedding party would be too much for my health. As sad as this makes us, I decided to go all out and dress up and have fun with attending. It will require some traveling which means our dogs will be going with us! Roadtrip!!!

K took me dress shopping. He was great! We had me in my wheelchair looking for the perfect dress. Let me tell you… it took a while. Since I have scoliosis, dresses don’t normally fit very well. After I found the dress that I liked, we decided to take it to a place who specializes in altering formal wear. The picture above is the dress before it has been completely altered. It’s a little long and it needs taken in on my left side at the strap and bodice. Darn that scoliosis!

I’ve never done this with any of my clothes before. However, now that I’ve experienced how easy it is, I’m asking myself why I haven’t done this before???

I hope that everyone is doing well. I pray that everyone is staying active and as healthy as you possibly can be. *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.

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.

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.

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.

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

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*

Life: full of fun!

Living On Oxygen for Life

Happy Day After April Fools Day! I’ve never been into the whole “April Fools” thing since the time my little sister wrapped a raw egg in foil and put it in my bed while I slept. Yep, I rolled over onto it and the egg broke, leaked egg guts and made a mess in my bed. Yuck! So, April Fools? No thank you! haha!

K and I have been BUSY lately. My garden is growing like crazy! We have little tiny cherry tomatoes growing (3 of them…wow!) and my potato plants are getting huge. I even ate my first strawberry from the garden and it was DELICIOUS! So sweet! Yes, I shared it with K. I didn’t really want to because it was so good but there was only one berry and it would have been rude of me not to share. Right?

I’ve started crocheting again. I had stopped in October since K was having trouble with his eyes. Things got hectic with his Glaucoma and Detached retina problems. And I thought taking care of my own problems was hard. Add helping K with his medical stuff (no lifting heavy things for 2 weeks for each eye surgery), it was a little crazy around here. Here’s what I’m working on right now:

I’ve been a little inventive in the kitchen lately. I created a protein shake that can rival Starbucks’ mocha, caramel frappuccino. It is delicious and I want to try making a peanut butter, chocolate protein shake (without the bananas). Here’s the ingredients that I used:

Rivals Starbucks Frappuccino!

I told you I’ve been busy lately. In fact, K made one of my dreams come true. Yay K! My older sister dug up a pond liner (hard shell) from their yard when they moved into their house and gave it to us. Of course, K said no we can’t have a pond. So, many, many years I have been working on him about having a pond. Yes, we kept it THAT long. Out of the blue, he asked me a couple of weeks ago, what I thought about having a pond. Of course I was overjoyed, ecstatic even. Naturally I said YES! Picture me jumping up and and down cheering and then bending over out of breath saying… “Whew, I’m tired now. But, let’s do this!”

I have to let you know. I AM A PLANNER. I like researching things I want to do so I know what I’m doing once I start a project. K is the opposite. Kind of. So, it took us a couple of tries to stack the flagstone to make it look almost the way we want it. Let me tell you… those are so heavy! K did all the hard labor but I still wanted to help with some of the physical stuff. I tried moving the flagstone and after four stones, I was done. K told me to go sit down. I like being involved in our house projects. The way I was involved was helping pick out the type of stone, fish, and planning how the pond will look. K wanted to name the goldfish with Beatles names. Ugh! Really? I named one of the goldfish, Thunder! K named one of them White (not Whitey, he says)… So, I call him White Ghost because he’s an all white fish. Clever, I know! We have a total of 8 fish. 5 small goldfish and 3 medium goldfish. It was hard to get K to wait until the water was ready for fish.

Bamboos just added my dream pond.

I also have 9 flowers on my lemon tree! NINE!!!
Please don’t fall off… Please don’t fall off!
I even caught a sale at the grocery store for fresh green beans! Late last night, I washed and blanched them so that I could freeze them. They are so much better than green beans from a can. Blech! I only wish that I had bought 2 bags of them instead of one. Darn it!

Yes, life is good. I have things to look forward to every day. Feed my fish, check my garden, and pray for lemons to produce on my Meyer lemon tree. Hooray! All these things help keep me happy which distract me from bad breathing days which is awesome. I hope life is going well for all of you.

Life is amazing!

Living On Oxygen for Life

For most of us who have respiratory problems, the Winter months can be tough to get through. I try to stay home as much as possible so that I’m not exposed to people who are sick. I know… I wish they would stay home too. Because I stay home, I get cabin fever. Seeing it overcast outside and cold, really makes me feel blue.

By the time January rolls around, I’m getting excited because I know the next month I’ll be planting my garden beds. Hooray! So, I get out the graph paper and plot out where and in which bed I want my seeds. We also decide what our newest “experiment” crop (K likes to call them crops now. He’s slowing getting into being a farmer. *wink*) will be. This year I let K decide. He chose something that I have wanted to try since last year. Corn!! How exciting, right?!?

Now we don’t have a lot of “farming” space for corn. So we are only planting one row of 6 or 7 plants in the actual ground (not a raised bed). We also decided we need more strawberries and more of a variety of tomatoes. K got pretty handy and found our old window planter boxes for the strawberries and I had an idea to mount them on the side of the garden beds. Nifty!

2018 Spring Garden

I love getting creative! We have hanging baskets of cherry tomatoes too. Hopefully they will be successful. I don’t have a lot of energy to take care of all of this but K has really taken the lead on the watering the garden so that I can enjoy watching all the vegetables grow. There’s just something rewarding about watching & caring for the things you plant to grow into the vegetables you later eat. This excitement helps motivate me. The joy and motivation I get from my garden is the main reason K is onboard with helping me with it. He does what he can to keep me moving and exercising my lungs. Not to mention all the yummy vegetables we’ll get to eat!

So are you ready for some warm weather??? Lots of love to you all!!

With the new year… it brings changes.

Living On Oxygen for Life

And now for something new… drama! I realized this past weekend that I had a letter on my refrigerator which I’d slapped under a magnet back in October 2017. Of course, you all know me by now to think… “oh dear, that can’t be good!” If you’re anything like me, you stick important things on the fridge, right? You know, things you DO NOT want to forget. Especially if it’s from the health insurance company.

This important document I have stuck on my refrigerator informs me of a change for the new year. Don’t worry… I was thinking the same thing.. “but these people never give THAT much of an advanced warning.” Am I wrong? Of course not! So I put it on my refrigerator so I wouldn’t forget.

Well, I forgot all about it because my brain just doesn’t retain all the things that have happened since October. Life was happenin’ around K and me. How was I supposed to remember that my Specialty medicine for my Pulmonary Hypertension was going to be dispensed through a different pharmacy? This is the medicine that I have to get labs done every month to even get a refill of this stuff.

I can only say that it’s truly inconvenient and very stressful for a patient, who must take this life-sustaining medication, to have to make this transition at all. It hasn’t been a smooth transition to the new pharmacy because I never have an available refill of this medicine due to needing lab work done every month prior to calling…then wait as I listen to at least 5 minutes of elevator/on hold music, for a refill.

Now I’m stuck within the slow grinding process of the new paperwork and out of medicine. They are supposed to call me when the pharmacy is finished “processing” my account to set up a delivery date. Meanwhile, I’m at home with no one other than myself to blame and feeling like I am slowly suffocating. I’m very short of breath and it’s a constant reminder to never let this happen again.

It’s pretty hard to juggle everything that has been going on in mine and K’s life lately and to have this slip from my memory makes everything seem like a crisis to handle right now. So, when my husband asks me to handle something for him, I start feeling a little buried right now.

For sanity’s sake, I made myself step back to calm down. I’m making a list to prioritize what “crisis” I should handle first because when I start feeling buried, everything feels like a crisis. From there, all of this mess will start to look clearer. I hope! haha!

The Beast Within… (repost)

Living On Oxygen for Life – a repost from 2016 because this is so important to read if you are dealing with anxiety and control issues.

Over the past 10 years or so, this beast inside me has grown and mirrored the decline of my health. It all started with what I thought was constant worrying. You know… when you have to time how much your oxygen will last? Well, that can make you worry about checking your oxygen tank a LOT when you are out having fun. Then I would worry about how long my energy will last while I was out having fun. Can I walk that far in the mall or in the hospital for doctor appointments? Will K get upset if I need to stop to sit down for a few minutes. I know the last one is kind of an irrational worry. Of course K wouldn’t get upset but he did try to push me to walk a little further before stopping which only made me feel like he wasn’t taking my need to stop seriously. My health wasn’t as progressed as it is now. So, pushing me a little bit further was a good thing that K was doing. It’s just when I was tired and felt like I needed a break, no knows how I felt except me.

I turned all this worrying about so many things in my life into trying to control everything around me. I felt like I needed to manage everything so that I had enough energy for things that I had to do around the house and the things that I wanted to do with K. I wanted to know where we were going when we were out of the house, what route we were going, and even how K drove. I needed advanced warning when K wanted us to go out to have fun so that I can be sure to rest up during the day. But all that wasn’t working. Trying to control everything turned into Anxiety because there is no way that I could control everything, be happy and not irritate those around me.

It’s taking a long time to learn to let go of the control issues. K reminds me by saying that he “Gets it.” and “I will always take care of you. I always have your best interest as my priority.” It has helped me a lot with him saying this to me. I have to remind myself of what he said over and over because my memory doesn’t retain information as well as it use to. So, when I get into my vehicle with K, I will remind myself that he has my six. *wink* Giving up the control and learning to trust is a very hard thing to do for me because I feel as if I’m losing more of my independence. However, as long as we have fun in our lives, all will be ok.

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.

Staying Active…

Living On Oxygen for Life

I AM SO EXCITED!!! K built me a second raised garden bed so that I can plant even MORE vegetables this year. He knows that my energy is waning but he is wanting me to keep active so that my lung function stays stable. Plus, staying active makes me happy even though it takes a lot more energy. So, this year, K has committed to helping me with my garden whereas, last year, he told me it would be my responsibility to take care of it.

Here’s some of my gardens:

I planted 8 seed potatoes this year.

Carrots, Broccoli, & Herb garden.

I know what he’s doing and I appreciate it very much. He’s getting more involved in hopes that I will be encouraged to keep moving which has declined over the last 6 months. In fact, we even went out clothes shopping for me last week. I normally hate shopping but I hadn’t had any substantial new clothes in years. I’m someone who will wear what I own for years before I become willing to shop for new stuff. Shopping makes me tired and again, K was so instrumental in helping me make shopping for clothes really fun. He helped me pick out clothes (because he’s SO good at! haha!), came in the dressing room and helped me get clothes on and off if I needed it, went out for exchanges for different sizes, told me to rest when he saw I was getting tired, AND told me, as I was showing off each piece of clothing, how much he liked it or asked me if I liked it or will I be comfortable in it. You see, I have scoliosis and clothes don’t always fit right. It can discourage me a lot when I go out clothes shopping. So having K there in the dressing room giving his opinion was SO helpful. He’s never gone into the dressing room with me before. So, yeah, he’s noticing and really trying to make a difference in my life and our happiness.

Today, I have February’s Need a Hug afghan being mailed out to a sweet lady, Linda. I’m still working on March’s afghan. It’s about half done. I hope I can finish it by the end of this month. I hope everyone is doing well. Much love to you all! *HUGS*

P.S. I just told K that I need a new Rubber Chicken. *sniff* Klondike’s (my current chicken) finally broke his neck *cringe*. It’s so sad because he’s been on some amazing adventures! When I get a new one, I will need help with naming him (or her). I’ve never had a girl rubber chicken before! Yes, I know I’m a bit strange about these chickens but they are our Road Trip Mascots. They go on our vacations with us for good luck. *sigh* So far, over the last 29 years, we’ve had Poke, Poke Jr., Mr. Chicken, & Klondike as our mascots. It really is a fun thing to do. haha! Like I’ve always said, finding something fun to distract me from my health, no matter how silly it can seem, is how I deal with life.