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!

Vacation without me

This is not the first time K has been on vacation without me. He once went with my family to Colorado for a week. That was back before we had cellphones. He had to call me on a payphone when they had stopped to camp. It was his first actual camping experience with a tent out in nature. He was a city boy that went camping. It was a true experience for him. He always says it’s not the same going somewhere without me because he wants to share the experience with me. He’s truly a sweetheart.

Last week, he went to see his extended family in Ohio. To make sure he went, it was an amazing feat of my family doing what they do when they’re called to action. The closer the departure date came to fly to Ohio, the more nervous K was about leaving me at home. He was tempted to stay home. So, I started planning.

As with any caregiver (or is it caretaker?), they need time to rest the emotions and rest the body from having to spend all their extra time (at least with us) taking care of the needs of their loved one (or friend, whatever it may be). Stress from being a caregiver (sorry, I’m going with ‘caregiver’. It just makes better sense to me.), builds and builds. If they don’t have an outlet or a place or an activity for just themselves to relieve stress, depression can set in and even still, it could happen. For you caregivers, I salute you for all you do to take care of the person you love and who needs you. Please try to take time for yourself in what’s called self-care and / or counseling.

I knew the dates that K was going to be gone. I had to get people to cover those dates or at least most of them. I realized if I could get most of the days that someone one was here checking on me, the better K would feel and the more likely he would go and enjoy his time in Ohio. So, I was able to get my BFF (M) to come over the next day after K left and she brought her son with her. We talked for 3 hours! It was fantastic! She asked what I needed help with and I asked her to please take out the trash and the wheel the trash bins to the curb. It was great because I didn’t think we would get them out before the trash people would come. GREAT JOB M & J!

M (my BFF) would text me nearly daily. She knew that my older sister was coming down too. My older sister is a take charge person and got a lot done. She fed the goldfish in our pond outside, made K and I sugar cookies (a batch and a half!), & made sure I was doing well. On Sunday, my younger sister came down who also helped a LOT. So while my older sister was still here, my younger sister held my Trilogy face mask to my face so that my older sister could cut my hair & I wouldn’t get tired from holding the mask. Talking about sisterly love and team work! Way to go SISSIES!

My older sister went home and my younger sister stayed. She and I binge-watch the first 2 seasons of Jack Ryan on AmazonPrime. I couldn’t believe she’d not heard of it before. *shock* FYI: Season 4 of Jack Ryan has been released! YAY! However, K doesn’t like binge-watching anything. He’s a savor-the-moment type person. Ugh! I’m so impatient! Though, there’s only 2 episodes out right now. We also made her favorite Chocolate Oatmeal Cookies to take home. She did all the hard work… including the constant stirring!

All throughout the time K was in Ohio, he would text and FaceTime me. I could tell he was having FUN. He was eating better and smiling more. He knew family & my friend were taking care of me. He even FaceTimed me on the 4th of July so I could watch the parade with him. Awww… it was EPIC!

I did try to wash my hair on Tuesday before my sister went home but I needed her help getting out of the shower again which was discouraging to me. I’m slowly gaining weight. K & I are frustrated because I have to rest more which means I don’t need as many calories. I have a sweet tooth. Now I have to be more careful to eat good food and less sweets. I’m internally crying over that. lol!

So, we’ll be discussing the weight gain with the doctors this month. In the next blog I post, I will discuss and show you what I’ve put together so that I can use my trilogy while showering. My original apparatus that I’ve pieced together works the best but I’m still tinkering with other ideas! I’ve even enlisted the help of my sisters to help me think of different ways to wash my hair. I want to be able to do it myself but if I need help with the hair washing, I want it to be easy for K to help. I will be trying a different idea tomorrow that involves K’s help. Wish us luck! I will not be defeated! =o)

Adapt and Overcome.

Living On Oxygen for Life

Adapt and Overcome!

How creative do you get when you are faced with a new challenge in your life? A year ago, my husband (K), bought us a new clothes washer and dryer. We wanted the largest load capacity we could afford. We didn’t realize how large the washing machine would actually be. Or should I say… how deep the machine would be.

I’m actually 5’1” and to reach inside the machine to unload or to rebalance a load for the spin cycle is virtually impossible. So I had to come up with a new way of doing laundry. I found what I needed in my kitchen. In fact, I already use them to get things down from the upper cabinet. I just love Club Crackers but K always stores the on the top shelf.

Kitchen tongs are incredibly versatile. It’s a perfect tool to use for extending your reach inside both the clothes washer and dryer. Just think of me as a little MacGyver! lol! Stay well and stay home to be safe. *hugs*

Make, contain and freeze meals… our new adventure!

Living On Oxygen for Life

Hello everyone! Breathing easy, I hope! On this blog, I have written so much about so many things that it’s actually hard for me to remember not to repeat myself! I’m assuming you are like me and want to read about new things from your favorite author. Am I right? Did I just call myself your favorite author? Hmm.. do I even qualify as being an “author?” Well, I do write this blog but I’ll let you decide on if I’m your favorite. HAHA!

On Monday, K and I dove into a new adventure. Before I start anything new, I research the heck out of it. Pinterest is one of my favorite places to go for information. Then, I move on to Google search! Though, SIRI (on my phone) could find me the information I need faster, I’m the type to do the work myself. I think I learn more that way.

K and I decided, after months of me suggesting we should try this, to prepare a bunch of meals to throw in the freezers for the days where neither one of us are up to cooking. I do most of the cooking in our house and sometimes.. ok, a lot of times, I just don’t have the energy to make a great meal. Since I switched from using an inhaler to using a nebulizer recently, I’ve rediscovered some lost energy. I’m slowly starting to get more done around the house.

Word of warning: Don’t try this until you have one full day of time to cook and make sure you have everything you need before you start. I made a simple list of the order of cooking I wanted to accomplish and stuck it where it would always be right in front of me (on the face of the microwave!) We started with a half empty freezer out in our garage. Yes, we have a separate upright freezer. K bought me an upright freezer because he knew it would be difficult for me to bend over and search through a horizontal freezer. I also did an inventory of what can goods we had for the recipes that I chose to make to fill the freezer. By doing this, I could make a grocery list to make sure that we had all the food we needed. We only wanted to use fresh ground beef and fresh chicken because you shouldn’t thaw meat to cook and then refreeze it. You only want to freeze it once for quality sake.

I knew I had to save K some running around because he spent the day before at his mom’s house helping her with her yard work and her pond. I ordered all the food through Walmart’s Grocery pickup service. All K had to do was pick it up on Monday morning before we started cooking. I had already ordered and received from Amazon.com the foil pans that come with foiled cardboard lids (5 lb containers) and the Reditainer Extreme Freeze Deli Food Containers (with Lids, 16-Ounce, 36-Pack) to store our prepared food. We were ready to rock!

The beginning of our meal prep adventure!

Once K unloaded the food, he proceeded to tell me that he was going to take a shower, which he did, and then he took a 30 minute nap. I was like, what? Wait a minute! I kinda panicked but he reassured me that when I truly needed help, he’d be there. I knew he was tired. It’s the beginning of the holiday season and he really needed the sleep. So, I got started with cooking the meat. I bought 15 lbs of ground beef and 2 packages of 6 large chicken breasts. I think my brain didn’t register how much ground beef could actually fit in my largest frying pan because I had to cook it in 3 separate batches. I had to cook the chicken in two batches. For the chicken, I just boiled them with 2 chicken bouillon cubes, salt & pepper. I used the broth from the first batch of chicken (added a little more water) to cook the second batch of chicken. I also reserved the broth for use in a few of the recipes we were making. Don’t let it go to waste. We ended up freezing the remaining 2 cups of broth! You could use it in chicken enchiladas!

Cooking the meat!

Half of the cooked beef!

By the time I was done cooking the first wave of chicken and beef, I woke K up from his nap in the family room recliner. He’s my heavy lifter and chopping guru. He use to be a Sous Chef in his former career. So, he’s fast with a knife. Really fast. So fast that I’m kinda jealous. I’m too accident prone with sharp things to even attempt to compete with his skills. He was in charge of chopping the onion and all the chicken. Thankfully, I kept the empty milk jug gallon I just finished and used that to funnel all the ground beef grease into. NEVER pour that stuff down the drain.

Beef grease!

By the time the second batch of ground hamburger was finish, I was started to get tired. Unfortunately, as I dumped the cooked beef in my jumbo mixing bowl, I dumped some of it on the kitchen floor. Guess who got to clean up that mess? Yep, my dog.. Rocco to the rescue. Ugh! It’s ok, I had plenty of beef to share. K decided to make the leftover cooked hamburger (about 2 pounds) into taco meat to freeze into 2 separate quart sized ziplock bags. Once we had all the meat cooked and the onions diced and sautéed in a little of the beef grease (K’s idea!), it was time to start preparing the marinara (in my largest fry pan that I used to cook the beef in) and the chili (in the crockpot). It was 2 hours later when K went to stir and taste test the chili, that he told me what I forgot to add… yep, the chili powder. Oops! Where was my brain at THAT moment? I’m not sure how good the chili will taste but I’m hoping by the time we thaw and eat it, I can tweak it to taste better. haha! I may just stick tater tots & a ton of cheese on the top of it and bake it in the oven on the days we thaw some out. Chili is so versatile, isn’t it? *wink*

Marinara for the Lasagna!

Packaging up the lasagna in 4 foil pans! SIDE NOTE: Yes I crocheted those pot pads!

BONUS NOTE: Make sure you pre-cook enough lasagna noodles for the pans you’re preparing! I cook mine to where they are just pliable because I’m freezing the pans of lasagna. I don’t want the noodles to be mushy when they thaw. I don’t prebake the lasagna before freezing either. I definitely misjudged how many noodles I needed. So, it took two batches. Overall, I think we did pretty good. We worked well as a team without killing each other. K let me be leader in this adventure which was nice. I really wanted this to work. By the time we were done, I was super exhausted. My legs & lower back hurt. We started at 10:30am and finished around 3:30pm. I think I shocked K. I don’t think he thought I would be able to pull this off. I showed him, huh? *wink* And then, I realized I had to get up at 8:30am the next morning for a doctor appointment. UGH! haha!

I was in charge of making space in our freezer. I was able to free up 2 shelves because the freezer was already half empty (or half full!). K was in charge of carrying all the prepared food to the garage and loading the freezer. He only sent me out there because we had to squeeze in one more larger pan of Impossible broccoli pie. I love that stuff. So, I made sure to fit it in the freezer without blocking the vents in the freezer. You have to have enough room the freezer for the cold air to circulate to maintain proper freezer temperature. Overall, we spent $135 on food for this project. We already had about half of the canned goods we needed. The meat alone was about $65. Then the containers cost about $33. The plastic containers are reusuable. Here’s our freezer now:

Lots of meals in our freezer!

The list of meals we made on Monday is as followed:

Impossible Broccoli Pie – 1 big pan made
Broccoli, Chicken & Rice Casseroles – 4 9×5 pans made
Lasagna – 4 9×5 pans made
Taco Soup – saved in 16oz bowls (didn’t count)
Chili – saved in 16oz bowls (didn’t count)
Burrito Pie – 3 9×5 pans
Taco meat – 2 1-quart ziplock bags
The remaining diced cooked chicken breasts in several quart-sized ziplock bags to make chimichangas or chicken quesadillas.

Overall, this adventure was a success and it proved to me that I can do something this major as long as I have some help. Yes I was very drained and I had to sit down a couple of times while I spooning food into containers or writing labels. Would I do this again with help? Yes I think so. I may try a few different recipes though. I don’t think I would try to make so many recipes at once again but K thinks we could do just as much next time. There are somethings I would PRE-MAKE ahead of time the next time we do this. Like, precook and then refrigerate the beef and chicken the day or night before. That would save a lot of time if I could get at least half of the meat cooked ahead of time. I’ll try to get some recipes that I used on my blog later this week.

I hope you enjoyed this episode of This is Christine’s Life! lol! Stay warm everyone. It’s getting cold down here in Texas.

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

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.

The Hair Dryer’s other danger…

Living On Oxygen for Life

I had a thought the other day about hair dryers. You know the ones that are handheld. Not the one’s that my mom use to sit under with curlers in her hair. I can still see her in my head sitting there with her rollers in waiting for her hair to dry. Wow.. She was a patient woman for beauty. She would while her time away painting her nails. She was skilled at that. Me? Not so much. *shrug*

My thought that I had was about a danger that I hadn’t thought of before. Mostly people know about the danger of not using or leaving a plugged in hair dryer near or in a bathtub of water. Yikes! Electric shock would ruin anyone’s day (or should I say life?). No, I was thinking about people who use oxygen while trying to dry their hair with that handheld hair dryer. It has a danger to it. Did you know?

Have you ever seen a hair dryer spark when you turn it on? I have. That in itself is dangerous because most people don’t clean the lint out of the vent of the hair dryer until it’s coated in the stuff. Now, we also need to remember about the heating element of the hair dryer. It glows red when you have the dryer on warm or hot, right?

Imagine yourself and how you use your hair dryer. Is it close to your face as you dry the underneath parts of your hair? Are you wearing your oxygen while drying your hair? I have to use my oxygen all the time. The thing is… I don’t dry my hair using a hair dryer but once in a blue moon (mostly in the Winter when I don’t want wet hair if I have to go outside). So, naturally, I didn’t really think of the danger that could happen if you mix a spark from a hair dryer and the oxygen that I or you use. In fact, at the website: Consumer Product Safety Commission, near the bottom of the page, it says not to operate a hair dryer where oxygen is being administered.

As for me, I air dry my hair. Using a hair dryer to dry my thick, long hair takes forever and makes me tired. Plus, I don’t like how it treats my hair. I end up looking like a fluff ball most of the time. Now that I have had this thought about the danger of using hair dryers with oxygen in use, I’m very cautious. I’ll admit that I still use one on RARE occasion but I know I shouldn’t. I hold the dryer as far from my hair as possible just to add an element of a buffer zone. I clean out the lint too. I make sure it’s in good working condition. I certainly don’t want a fire on my head!

Now, I’m not saying that you should use a hair dryer but if you still want to, I can’t stop you. Do it with extreme caution. Keep your hair dryer in peak condition and away from your oxygen. If it sparks, you’re gonna have problems.

Going the extra mile…

Living On Oxygen for Life

I know I’m a lucky person. I have a husband who loves me and takes care of me in ways that I have no idea that he’s doing it. May 26, 2017 was one of those days.

Last year, K found out that U2 was coming to Dallas, Texas in 2017. It’s rare that they come here and they are one of K’s favorite bands of all time, next to Pink Floyd, of course. So, he asked and then begged and told me how important this concert was to him. He said he’d consider it his birthday AND Christmas present if I’d buy these tickets for him. I’m the CFO (Chief Financial Officer) of this family. Anything spent, that’s over $100, should be cleared through the CFO. That’s what happens when you’re living with someone who is disabled and has to go to the doctor often and take expensive medicine.

I knew how much K wanted to go to this concert and I won’t lie to you and say that I was really excited about going to the concert at first. I hadn’t been to a concert in YEARS. I didn’t know if I’d be able to last through a whole concert. I mean, how long do concerts last nowadays? That question was the most important question we faced going into planning for this night of fun. Yes, I bought the tickets. In fact, for the first time ever, I bought a seat for the disabled and a companion seat ticket. We decided to use my wheelchair.

The closer we got to the date of the concert, I started getting more and more excited. I asked my younger sister how long concerts last and she thought about 3 hours. So, we thought 2 liquid oxygen portables would be enough. We didn’t want to leave before the end of the concert. Two portables would give me about 4 hours of time safely. Though, when you least expect it, things don’t always go as planned. Do they?

On the day of the concert, I dressed up in my retro dress. It took me a while to figure out what shoes to wear and how to tie the belt around my dress. I’m not a fashionista. At all.. but K kept saying that I looked beautiful. So, how could I NOT wear a dress? How sweet of him!

We finally departed our house and drove to the DeathStar (the new Cowboys stadium) and there was a lot of traffic. I whipped out my handicap placard once we got close to the stadium. I told K to slow down and I rolled down my window. Well, I just pressed a button and it rolled down on it’s own. I stuck my head out the window and waved my handicap placard (like I knew what I was doing!) to a cop directing traffic. Yeah, I’m not shy AT ALL. The policeman walked up to my van and I asked him directions on handicap parking. That’s right. We were going in style! We ended up paying just a little extra (ok.. a bit more than I was comfortable with) to park at the building (a sidewalk away) in the handicap. It was right up there near Valet parking. A parking attendant poked his head in K’s window to scope the inside of our van. I don’t think I need to tell you what they were looking for with what happened in Manchester, UK a few days prior. There were police dogs walking the crowd and police with automatic rifles. Texas is serious with security. No purses allowed unless it was no larger than 5″x8″ in size. I actually took my PH International Conference name ID badge that I got in June 2016. It held my ticket, driver’s license, credit card, insurance card and my cellphone. It was the perfect size!

We got in the building and had no idea where to go. However, we quickly found out that if you are arriving in a wheelchair, not only do you jump through the line to enter the building quicker than anyone else. You get some incredibly friendly help from the Event Staff. It was nothing short of AMAZING! We only had to say we weren’t sure where to go and the Event Staff person we asked not only told us where we needed to be but also, TOOK us there personally. It was awesome! I was all smiles and “Thank YOUs!” I have to say the handicap seating was excellent. We were fairly close and not a single person was in front of us.

U2 concert 2017!

Now the scary part. As K would say, we “GROSSLY” underestimated the amount of oxygen we needed for the concert. I use 6LPM of oxygen 24/7 and my 2 portables would last roughly just over 4 hours. It was already 7pm which was when the concert was scheduled to start. It didn’t start until almost 8pm and it was the Lumineers, not U2. K and I talked about what we would do. I told him that I could turn my oxygen down to 5LPM if I just sit here in my wheelchair but I’d have to turn it back up to use the restroom or if I started feeling bad. He had left me for a little bit to find out about souvenir concert shirts. At least that was part of what he was doing. I didn’t realize he was going down to the police or the Event Agent at the door to see if he could later exit the building to refill my oxygen. He said no. He couldn’t let him back in he building if he left. Well that sucks! Right? So, he next went to the fire department personnel and explained our situation to him. He asked if they had oxygen with them and they said not to worry. If we have problems to bring me straight to them and they would help. Wow! (yes, they had oxygen!)

K came back to his seat without even telling me he had setup a backup plan in case we needed it. He even packed a picnic to leave in the van for after the concert in case we were hungry. We had a lot of fun, with my oxygen turned down to 5LPM, I was able to watch the whole concert from start to finish. We even stayed a little longer to watch some of the breakdown of the stage. That was cool too. It was just after 11:30pm when we finally got back to my van but all was well and we had a great time. Quite a number of the event staff and a police officer asked if we had a good time. I’d like to think this kind of hospitality happens everywhere but being Texan, I’m kinda biased. *hugs* haha!

Waiting for the U2 concert… Lumineers will be first!

Lots of love to y’all!

Sleep Study Time

Living On Oxygen for Life

There are different reasons for a person who may require a sleep study. Sleep Apnea is one of them. I’ve had quite a few sleep studies dating all the way back to 1993. Even though I was already on oxygen at night only, my lungs couldn’t work well enough while I slept to blow off the CO2 that my body was retaining. My breathing was too shallow. I would have really bad dreams and I’d stop breathing while I slept most nights and the problem was only getting worse.

I was seeing a Pulmonologist in Dallas, TX, in 1993, who realized that my scoliosis played a large role in my breathing problems. Because my ribs are so deformed from my scoliosis-curved spine, it reduced the lung capacity that I had to breathe. Twenty-four years ago, my lung volume was approximately 25% of what a normal, healthy person my current age back then. Today, it measured at 16% at my annual physical. So, over the span of 23 years, my lung capacity has lost about 1/3rd of it’s former volume. Now, if you add the complication of Pulmonary Hypertension to the mechanical difficulties of Restrictive Lung Disease (from my deformed ribs due to Scoliosis), my health becomes difficult to treat. Now, add heart complications. I was born with an ASD (closed on its own) and an VSD (surgically repaired at the age of 10 years old) but also currently have trouble with Ventricular Tachycardia & SupraVentricular Tachycardia. This is the challenge my doctors face. How do you treat one problem without it affecting the others? The answer? Very, very careful trial and error. I make myself heard and understood. I carry test results from one doctor to all my other doctors. We are a team.

So, when I was starting to have a noticeably difficult time breathing earlier this year, I decided to systematically figure out what is causing this large step back in health. I started with my PH doctor. Then went to my Electrophysiology-Cardiologist. After that, I went to my family doctor to bring him up to date. Next, I went to my Pulmonologist who follows my bipap machine. We set up a sleep study. Not my favorite thing to do. I hadn’t had a sleep study since 2009. Maybe I just needed my bipap setting tritrated and that would solve everything… but I don’t think it will. I’m still thinking it has to do with Tikosyn.. the new cardiac medicine I started taking in place of Cordarone.

Next week… I see my normal cardiologist for an ECHO and to ask for a second opinion about this Tikosyn. I’m not giving up until I’ve tried everything to figure out what triggered this breathing setback. I don’t want this to be my new normal. Sure, it’s nice that K does all the grocery shopping on his own but sometimes we have fun together doing it. It just makes me too tired now.

If you’ve never had a sleep study done and you’re curious about them because you have been told you need one, well, wonder no more!

Here I am all wired up for my sleep study. There are a LOT of wired that are attached to your head, arms, upper chest, and legs. Don’t forget a few weird places like under your chin and next to your eye. Those get a little itchy! You also get an upper chest band and an abdomen band that monitors your breathing. I was able to bring my 3 pillows that I use and my own bipap mask because I already use a bipap. There is a dress code for pajamas. Some sleep studies are done in the hospital and some are done in a stand alone building. If you are to have a sleep study and you use oxygen 24/7, be sure to mention that and take a tour of their “bedrooms.” If you are doing a sleep study outside a hospital and you use a high flow of oxygen 24/7, like me, make sure they can accommodate your oxygen needs. I had to bring my splitter so that I can use two oxygen concentrators together; each set at 3LPM to be able to have enough oxygen while doing my sleep study.

Once you are in your sleep study, if you are having trouble breathing or with the mask they gave you to try, speak up. Let the technician know what’s going on. They’ll try to help as much as they can according to the doctor’s orders. Make sure you understand what your doctor wants to try during the sleep study before you have your sleep study. They really want you to be comfortable so that you can sleep as best as you can. Tell them how you sleep in bed. They’ll want you to try to sleep on your back for a while but my tech let me roll over (which was pretty hard to do with all the wires!) onto my stomach to try to fall asleep.

Seriously, I’d love to hear your comments, experience and advice for future sleep study patients. I know that the Bipap or Cpap machines can be a challenge at first to get use to but, once you do, they can help by improving the quality of your life… at least your sleeping life. *wink* My bipap machine has kept me alive for the last 23 years. I’m glad I didn’t give up on mine.

October Means Flu Shots

Living On Oxygen for Life

A little nervous. I have a doctor appointment tomorrow (Monday) and should be getting my flu shot. I’m nervous because last year when I got the Prevnar13 shot (a different Pneumonia shot) it nearly kicked my reared, leaving me feeling sore and wiped out. I told K that I wasn’t ever getting that shot again. He said, “Yes you will.” That shot is what stands between me and a stay in the hospital if I get sick and it progresses into pneumonia. I just hope the flu shot won’t hit me as hard as the Prevnar 13 shot did last year.

The flu shot usually gives my arm & joints achy pain as well an achy body with a mild sore throat and low grade temp (99 degrees) for a day maybe two. But that’s normal for me. It’s natural for your body to respond in such a way, to a degree, when it detects a foreign body. It tries to attack it and then it builds up antibodies to it to prevent future similar infections of that kind.

I hope if you haven’t yet gotten your flu shot and are not the few who have an allergic reaction to its ingredients, please get the flu shot. It can really help if you get a cold. It will help prevent that cold from turning into the flu or even pneumonia.

Here’s some information about Prevnar 13. Click on the picture to enlarge and read. This is the information my doctor gave me last year. You can also search my blog using the search box for a post I did about Prevnar 13.

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.

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.

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.

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	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.	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!

My PH Story

Living On Oxygen for Life

While at the 2016 Pulmonary Hypertension International Conference in Dallas, TX on June 17 – 19, I met Steve Van Wormer, who helped create the PHAware Global Association. At the conference, he did interviews of PH patients to help get their PH Stories out to the public to raise awareness of this devastating and currently incurable disease. He asked me to do an interview. I tried my best to do the interview. He was SO gracious when my brain decided to blank out.. I explained that I write much better than I talk. The long term effect of high CO2 on my brain really has affected my memory and recall. Thank goodness for editing… and cut & paste. Hopefully, he can make something out of what I said.

For this reason, I want to get what I REALLY wanted to say here on my blog. Here we go!

**********

I’m aware that I’m rare.
Rocco has now become PHAware. He’s my PH Pup!

My name is Christine Liles and I have Secondary Pulmonary Hypertension. I was born with PH due to Congenital Heart Defects and Scoliosis that caused Restrictive Lung Disease. The doctors knew almost right away that I had Pulmonary Hypertension. The pressures were really high and since I was born in 1969, there were no PH medications or a course of treatment for this very rare disease. So, I grew up living with this disease taking Lanoxin for a short time to help slow my heart rate down. I was restricted from most gym activity because of the shortness of breath.

My parents & sisters were great at providing me with as close to a normal life as possible. Before the age of 10 years old, if my sisters bowled and played baseball in leagues, I was right there with them. Granted, I was much slower but I did it even though the doctors kind of frowned upon it. At the age of 10, my parents finally talked my Cardiologist into performing a corrective surgery on my Ventrical Septal Defect in my heart. My Thoracic & Cardiac doctors, both, didn’t want to do it because they didn’t think I had a chance to make it off the table. It was my most glorious moment walking out of the hospital 7 days later with a patched VSD. With that successful surgery, my PH pressures reduced slightly.

Life really improved until I turned 17 years old. I started having blackouts while driving, began becoming forgetful, and my CO2 was much higher. So I started using oxygen at night. As time went by in my life, I started having more Shortness of Breath. My oxygen flow increased, I started using a bipap to sleep with and I had to stop working all together. This happened when I was 23, just a year after I got married to the love of my life. It was a very difficult adjustment. He knew it was coming.. this health change. I told him when we were dating and then before we married. This is the best I will be. I won’t get better because there are no medications to fix my PH and only one pill that can regulate my heart arrhythmia that I now have. I asked him… Can you handle this? His answer was total honesty which is what I wanted to hear but was hard to hear because he said.. I don’t know. And then, I went on oxygen 24/7. My husband has been my rock and he’s made from the finest quality of human beings… his parents.

In 2006, my Cardiologist asked me to check out the medicine Revatio & Cialis with my pulmonologist. So off I went to see my Pulmonologist who then sent me to see a PH Specialist. I didn’t even know there were PH Specialists. Over the years, after trying most of the PH medications that are available, which there aren’t nearly enough, there is only one medication that my body can tolerate. This is what I will stay on until something new comes along that my doctor thinks might work. I’m not a candidate for lung transplant because of my deformed ribs. I spend my life finding different ways to do the things I need to get done. Picking things off the floor are by using my toes to lift it to my hands. Vacuuming is my husband’s job now. I bend at the waist to wash my hair. I have an adapter for my van to use my bipap on the road for vacations while in the car if have trouble breathing. I do things in short bursts of energy. What takes my husband 2 hours to clean the whole house, takes me all week and even then I can’t get all of the really hard things done.. such as scrubbing the tub, vacuuming or mopping the floors.

This is my life now and I’ve learned to adapt which is the key to keeping myself happy. I’ve found hobbies that I can do that brings me GREAT joy. Just to be able to garden, my husband has built me a raised garden at the height of 16 inches to help me not have to bend down to the ground to grow vegetables. Instead of growing my dwarf fruit trees in the ground, he planted them in half whiskey barrels. I had trouble with dragging a long rubber watering hose, so I asked for a Pocket Hose because it is SOOOO light!

Will there be a cure in my lifetime? I don’t really know. In all honesty, I’m not so concerned for a cure for ME. I’ve had a GREAT life, filled with love and so many adventures. What I am concerned about are all the children who have Primary Pulmonary Hypertension. They need a cure in their lifetime. They have their whole life in front of them but with PH and without a cure, all they have are the medications that are currently available. My passion is for these kids. I know what it’s like to grow up with health problems. PH is no easy disease to live with. Help us. Be PHAware and get the message out that we need a cure. WE ARE DESPERATE TO BREATHE. Check out PHAware.global to see how you can become involved in finding a cure and spreading the word about Pulmonary Hypertension. Or follow on social media @phaware

#PHAware

What brought me to think about Suicide…

Living On Oxygen for Life

A good friend of mine wrote this poem and it really spoke to me. It’s about a topic that isn’t talked about enough. Please read this poem and then I’ll begin to outline my experience with this subject.

WHAT WOULD HAPPEN

What if we never wake
To see a smiling face
Upon our families lips
What else could take that place?

Your story has yet been told
But your fear is not just yours
That it won’t be heard again
Through your children’s wars

If you join the rested dead
Because the memories hit too hard
Your fable of what could have been
Will end, silent and barred

So do a favor not for you
But for those that stay behind
Never end your silent fight
For what you couldn’t find

Because all that’s lost is right in front
When you awaken a new day
That pistol’s meant to protect
Not take your life away

Be the one that won’t back down
And the parent that won’t say NO
Because when you’re gone it all goes numb
There’s no rewind for that low

The eyes that stare with crazy dreams
As you awaken from your past
Are the ones of the innocent child
That wants their parent back

When the words come out of you
That now is the time to go
Be sure your memories will not fade
When they sink you down so low

So live this life for those that watch
And do it as you should
But don’t be scared to reach a friend
That has been where you have stood.

Levi Bridwell
2-5-2016

Let me take you back to when I was nearly 15 years old and had just underwent a surgery that would change the course of my life forever. It was the most traumatic experience I have ever experienced in my life that left me with some deep emotional scars. The surgery I had, brought me so close to dying that even the doctor was freaking out (professionally, of course). He allowed my sisters, my parents, and my grandmother to come into the ICU two at a time to sit next to my bed for as long as they could bear to. I was a mess. My older sister was so upset that she started crying and had to leave the ICU. Her boyfriend stayed with me holding my hand. My little sister came in with our grandmother. I was so hot from breathing so hard that the doctor relented and allowed a fan to be placed pointed directly at me to attempt to keep me cool. I had a tube up my nose and down my throat to my stomach to pump out the flow of black bile that I was continuously vomiting up. I was dying and everyone knew it. Yet, I struggled to hold on.

When my little sister came in, and sat next to my grandma, she suffered quietly as she was always so sensitive to being cold. She sat in the direct path of my fan which was on its highest fan speed. I looked at her through the bed rail and I felt so bad for her. My heart rate was up to 200 bpm and I was sweating. I couldn’t turn it off for her. So, I did the only thing I could think of… I gave her my bed sheet for her to shield herself from the fan.

I will never forget the look on each of my family members’ face as they came to sit with me. There’s so much more to this story but I’ll leave it for another time. I just want you to remember this moment as I jump you forward a few years to when I was nearly 17 years old.

Life for me changed radically when I was nearing 17 years old. I started having blackouts. I wrecked my car numerous time due to blackouts, I tried working while I went to high school which made me continuously tired. I became hypoxic, forgetting homework assignments and where my classes were within the school. My psychology class assignment was to write an autobiography which pulled me so deep into depression that I would lock myself in the bathroom and cry. I started dropping classes that I didn’t need credit for to graduate because I was so tired and I was going to fail them.

With all of this going on, my parents had been divorced for about 3 to 6 months and we ended up moving outside my school district. We had to drive ourselves to school everyday instead of switching school which I do not think I could handle.

And then…. I got sick. Really sick. Pneumonia. I was so sick that I was carted off in an ambulance from my mom’s house to the hospital in the middle of a snow storm and stayed for 2 1/2 weeks making me even further behind in school. I had incompletes, Ds and an F on my report card with so many absent days reported that I remember thinking that there was NO WAY I was going to graduate from High School since this was my Senior Year. Plus, I had to quit my job.

Among all of that, my doctors realized that I needed supplemental oxygen at home at night. Everyday I thought about killing myself. Every. Single. Day. I doubt even my best friend knew I was thinking about suicide. So, I come home from a second hospital stay from rebound pneumonia and started my attempt to catch up on my school work. I couldn’t do it because I was such a mess. My mother came into my room to ask me if she needed to find some help for me. That’s all she asked and when I said, “No, I can handle my problems,” she didn’t ask anymore.

When I was like this, I closed myself off, became quiet, because any more added pressure would have been just too much for me to handle. I kept thinking back to the last surgery I had and the looks of my family and KNEW that I could never try to kill myself no matter how much I thought about it. I couldn’t do that to them. I didn’t think anyone noticed the turmoil that was going on inside me. Trying to deal with health issues, trying to graduate high school, dealing with a dysfunctional family life and more. I did graduate. My teachers passed me through due to my effort of trying. We moved to Texas.

Slowly my life started to change once I picked up an old Pentax camera, took long walks (finding a Pecan tree!), and learning to cook a few things for myself. I spent nearly a year just finding myself. Getting use to having my lungs needing supplemental nightly oxygen and learning to accept the future changes that will come. I know life will be ok for me but every-now-and-then I think of that surgery that very nearly ended my life. If I could survive THAT, then I could most likely handle the rest of this mess in my life. But, not everyone can, there are people out there truly struggling thinking that the only way out is through suicide. That’s not the answer. Getting help is the first step to finding your way through whatever life has thrown at you. Find a school nurse or counselor, a pastor of a church, a close friend or call one of the hotlines listed below and tell someone what’s going on that’s making you feel this way. Do it today.

Thanks to Lifeline Website, you can find information about what to expect when calling the Hotline.
National hotlines:

In the USA: you can call the National Suicide Prevention Lifeline free from anywhere at 1-800-273-TALK.

In the UK: you can call the Samaritans anytime, 24 hours a day, 7 days a week, on 08457 90 90 90.

In Scotland: you can call the Breathing Space phoneline, which is available 24 hours at weekends (6pm Friday – 6am Monday), and 6pm – 2am on weekdays (Monday – Thursday), on 0800 83 85 87.

Know Your Limitations…

Living On Oxygen for Life

Know Your Limitations for the Holidays.

So, you use oxygen. Whether it’s 24/7, like me, or you use oxygen during activity, you should always know your limitations. The holiday season is now upon us. Heck, it’s been upon us since just before Halloween! Personally, I don’t understand that. I’m a type of person who loves to enjoy each holiday for what they stand for. Aren’t you? Though, I certainly can’t wait for K to start decorating for Christmas. He really has a knack for that. Remember last year?

Your limitations are your body’s warning signs for telling you to slow it down and pause for a rest. No one wants you to peter out before the fun starts…whether it’s board games or Football games –backyard or on the TV in your comfy recliner. I think everyone who reads my blog would want you to enjoy the holidays with your friends and family without risking your health by overdoing. Right, y’all?

So, what do you do? If you are the one who does the cooking for the holidays of the past but are now on oxygen, you can either pass the baton to another family member to cook the meal or delegate the whole meal as a pot luck. You can even prearrange by ordering a precooked turkey or ham from your favorite store and have it picked up! Save your oven for the important stuff, like PIE! Yum!

Plan on taking sit-down breaks that are uninterrupted. Got the meal under control or have someone else tending to it? Take that power nap before the meal. Teenagers are a great source for free help. Trust me… I was once one! They will do just about whatever asked to earn a chance to sit at the “Adult” table this year. You remember the moment in your life when you were given that honorary seat at the table where all the adults gathered to sit and eat (and talk!). It was….a beautiful day. *sigh*

With all the activity and excitement, even if you are not prescribed to use oxygen 24/7, you should always use your oxygen as your doctor has prescribed! You should never feel embarrassed to wear your oxygen. Your friends and family care about you and should always put your health as a priority. They want you to have fun too. So, if your body is telling you it’s tired but your brain still wants to get something done, listen to your body. Don’t be stubborn. Just get some rest and ask for help. People are actually willing to help you but most are just unsure how to be of assistance. Need something moved? Ask! Need help getting up from the couch? Ask! Is your oxygen tubing stuck around a chair leg? Ask for help! Someone STANDING on your O2 tubing??? Well, shove him off!! No… Just kidding! I always tell people when they come into the house that it’s ok to accidentally step on the tubing…just don’t stand on it and to watch their feet so they won’t trip. You need to not be afraid to speak up and ask for help. It’s really ok!

Wherever you go and whatever you do for the holidays, I hope it’s full of fun, love and adventure. Leave a comment tell me how you handle the holidays on oxygen! Be well and stay safe. —Christine

I’m a genius!!!

Living On Oxygen for Life

I’m a genius! Ok, well, maybe I’m not technically a genius or even very intellectually smart but I’m pretty darn creative. You see, I have a problem. I want to go to a movie. Normally that wouldn’t necessarily be a problem because K would go with me and carry my oxygen. Right? Yep. He would.

But what if this is a movie that he REALLY doesn’t want to see even though I have been waiting for this movie a whole year for it to come out on the big screen? Not a problem because I have a cart for my portable oxygen, right? Ok. That sounds logical. Just use my cart to pull my oxygen around so I won’t become exhausted from carrying it. Great!!!

Only one huge problem with that… the movie is over 2 hours long which means I’ll need two liquid oxygen portables. (Remember, I use 6LPM of O2) Not to worry because I have two portables. However, the problem is that I have a cart that only carries one portable. And before you ask or say it, I can’t carry one and drag one in the cart. I’d be wiped out before I got to my movie seat.

So now I’m in MacGyver mode. I came up with an idea last night. I don’t care what the end product looks like as long as it works to carry both portables with ease (and maybe even my purse too! Sweet!!!). All I need is my plastic tub that I use for trash in my van, my handy duct tape (my home is NEVER without duct tape!), and my luggage carrier. This morning I was looking all over the house for my luggage carrier and couldn’t find it. I thought my MacGyver moment was doomed already from the start. But, I texted K because he remembers EVERYTHING and surely he’d know where the carrier was hiding. In fact, I thought he took it to work. Don’t ask…

To my surprise, instead of a text reply, he FaceTime’d me back and he walked with me through the house to find it. I know why he did that. It’s because I told him last night that I thought about going to this movie on just one portable. He thought otherwise. With my breathing becoming worse while on the new PH medicine, Adempas, he put his foot down saying take both portables. He wants me to get out of the house more but wants me to be safe and smart about it. Sometimes I’m so excited about something that I don’t always remember I’m not really Wonder Woman. *GASP!!!* Shhhhh… Don’t tell anyone! Aw… He’s so sweet.

Now that I have everything I need, I will begin the construction phase of my MacGyver moment. I will build myself a cart for two oxygen portables! Wish me luck! Pictures of my hopeful success coming soon. haha!