When I have a surprise burst of energy…

Living On Oxygen for Life

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

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

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

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

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

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

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

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

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.

Well…. this is something new..

Living On Oxygen for Life 

This morning was all planned. I was going to wake up “casually early,” meaning around 9:30am instead of 10 or 11am and head off to get my labwork done for the month. You see, I still have to get monthly lab work to check my liver function because I take a Pulmonary Hypertension medication called Tracleer. However, for the past week, K has been off work due to cataract surgery in one of his eyes. He can’t lift anything over 20lbs for a week. Therefore, he can’t safely perform his job. He’s about to have his other eye worked on in a few days. 

Anyway, he’s been home and sees that I’m nearly awake when he recalls a VERY important factor about this month’s lab work changes that we were told by my PH doctor earlier this month. She wants me to have my cortisol level checked. I forgot all about that which is why it’s vital that betwixt the two of us, it’s handy that K has a memory like an elephant. Believe you me. I do not have a memory worth much at all. Even if I write things down, I’ll forget about it and then forget where I put my note once I actually remember that I wrote it down. 

So, I was scrambling out of bed, hot footing into the bathroom grabbing any color-coordinated clothing to wear on the way to take a speedy shower. K said I was suppose to go early in the morning. I’m freaking out because I didn’t want to delay my liver labs. I was running low of Tracleer and I can’t get those pills refilled until the liver lab results come back to the doctor. Thankfully, they usually get them the next day. But, I didn’t know how early I was suppose to show up for a cortisol lab. The doctor only said early AM which to me, that could be any various time in the morning. By the time I was out of the shower, dressed & ready go… K suggested that I call the lab first to get their interpretation of early AM for this new test. It was already 10:30am quickly approaching 11am (which happens to be my “I’m officially awake time. Let the day begin.”

So, I pick up the phone and call. I’m so glad I did. Before 9am, they said for cortisol labs. I hung up with a polite, “Thank you!” and then cringed. This is going to be hard. I’m going to have to drag myself out of the house early! It’s not even going to be for a doctor appointment…THAT, I would understand. But just for labs. Ugh! haha! I’m going to have to think of a good reward for tomorrow morning. Any suggestions?

I know I’ve seemed absent lately on my blog. I do respond to email, Facebook posts, comments of my blog here. I’m not gone at all. In between all of this, I am crocheting the Need a Hug afghans, which I have one to send out. Plus, K finished my second raised garden bed that I planted 8 seed potatoes in (so excited!) which leaves me with my other 2’x6′ bed & my 3’x4′ bed to plant vegetables in. I did plant 2 tomato plants already. As soon I finish planting my seeds, K will help me cover them with netting. The netting really helped last year to keep bugs (and stray cats) away. 

I truly hope y’all are doing well. Let me know how you are doing. *Huge Hugs* to all of my readers & visitors. 

Getting ready for company..

Living On Oxygen for Life

This is how K looks out for me. He’s awesome. I meant to post this last year. I just wanted to show you that there are some really great spouses out there. There are so many things that are just too hard for me to do and that’s when K steps in and takes over. I love this man.

Me: (finally lying in bed with Bipap & oxygen on totally exhausted from working along side K to super clean the house) Thank you so much for your help K.

K: (while mopping the hallway) Is the music too loud?

Me: No. Right now I don’t care about the music or the light being on. I’m exhausted. What you’re doing is so appreciated.

K: (stops mopping) This is what you wanted done.. What you needed, right?

Me: What you’ve done is awesome. You’ve gone above my expectations. Thank you.

Life isn’t easy… is it?

Living On Oxygen for Life

November 2016

November 2016

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

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

O2 spltter

O2 spltter

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

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

A Darn Good Day!

Living On Oxygen for Life

I had a GREAT day yesterday. Even I couldn’t believe what all I got accomplished on my own. I made it to the pharmacy and then decided, what the heck, I still have energy… I’ll go grocery shopping all by myself. I did find myself huffing and puffing my way into the store but I grabbed a cart and rolled it the short distance to the produce department while doing a little purse-breathing along the way. (Remember? K has been taking over the grocery shopping for the last 5 or 6 months. It’s been getting harder and harder for me to go along.)

I did a bit of “slow browsing” to give myself enough time to catch my breath and then away I go to shop to my heart’s content. No, I did not buy ice cream. But I did by ingredients to make cookies and maybe even turtle cheesecake. *drool* I even had fun saying hello to people I don’t even know, even the little kids. I had so much fun!!!

I knew I’d be tired when I got home because K wasn’t going to be home yet and I skipped my morning diuretics to get an early start on my day. So I grabbed a roasted chicken for dinner. Won’t K be surprised?!?!

I got home with my groceries and unloaded AND put them away! All. By. Myself!!! *super proud of myself* Next, I started dinner! Whaaaat??? How am I even doing all this??? I just don’t know. All I can say is….K sure was surprised because not only did I accomplished all the stuff I did yesterday, I even made a salad to go with dinner! Whaaaaaat? I think I scored some extra points with the salad. *grin* Who says men don’t like salad? After dinner, my energy was definitely draining. I could only rinse off the dishes but you KNOW I had just enough energy to sit down to crochet for a few hours while we watched some TV together.

It was a happy day yesterday and I hope I have another one again soon. I am paying for all of yesterday’s effort today. I’m tired, tired, tired today and when I told K that I was ready for a nap earlier, he politely reminded me that the Cowboys play at 3pm which is about 25 minutes ago. Argh!!!! haha! So, here I am with my bipap on, in bed, trying to power up for the game.

I’m happy. I hope I don’t mess up whatever I decide to make for my contribution to our family Thanksgiving dinner. It’s supposed to be something chocolate-flavored. That’s where the turtle cheesecake comes into play. *shrug* hehe!

Have a great Sunday! Lots of love to you 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!

SleepStudy

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.

It took 25 years.. but I did it!

Living On Oxygen for Life

PROLOGUE
K and I have been together for 28 years and counting. I’m very happy and proud of us for such a monumental achievement. We’ve been married for 24 of those years. It’s not easy to live with someone whose health is progressively changing. In the beginning, the changes in our lives came about slowly. We kind of thought, well, maybe I wasn’t doing enough to keep myself in good health. Maybe I was getting a wee bit lazy? But then, I would have a major health issue and our lives would be thrown into a temporary upheaval. Over the years, this would occur and sometimes without a warning shot across the bow to let us know it was about to happen. That’s the hardest part of having breathing problems (and heart problems!). We just never know when the unexpected will happen. One day I’m feeling good and then the next, I’ll be feeling like I want to sleep all day, all week and feel like I can’t snap out of it. At least that’s what it’s feeling like for me this last few months.

TRUE STORY

Over the past 25 years, during the month of September and October, Texas holds its State Fair. Every year I would ask K if we could go to the fair. It looked fun. I mean, the reporters from the news channels would all make it sound and look like fun. There are fun games, rides, and all the junk food you could imagine! Who wouldn’t want that? Apparently, K didn’t. Boo! He would always tell me that it would be too hard on me. It’s too much walking. It’s too hot… He had me with the “it’s too hot..” Darn him!

But this year, I didn’t really even ask. I haven’t really felt well. Last week he asked me what I was doing on the weekend. I scrunched up my eyebrows in deep concentration trying to remember if I had anything planned. Then I got my cellphone out because my memory wasn’t able to think of anything and I knew my calendar on my phone would have more information than my brain would have. Sad, I know! haha! So, I looked and what do you know?? I had nothing planned. K asked me if I would want to go to the Texas State Fair with him on the weekend. This time, I squinted my eyes at him trying to figure out if this was the same man I’ve known for the past 28+ years. All while my heart started melting with happiness and excitement. I couldn’t believe it! He finally changed his mind. He even said that “we’ll use the wheelchair, take both portables, and only stay as long as you can handle it.” Holy smokes! Well ok then! We’re going to the State Fair! Naturally, I did a mental happy dance!

It took us an hour to drive to the state fair and another hour to park. Sheesh! What a sticky wicket that was but at least we got to hop on the Tram to ride up to the front gate from our parking spot. Woohoo! They even had a place in the back of the tram where K could fold up the wheelchair and load it up on the tram. Well, that saved us some walking time for sure. We didn’t even have to stand in line to get tickets because before we left, I did a bit of research and bought our tickets & coupons for food online and printed them out. I do have to say that it was stinking hot. It was 90 degrees. It’s supposed to be Fall!

What’s the state fair without meeting Big Tex? He sure is tall. His clothing wasn’t what I thought it would look like though. I thought his belt would actually be a belt but it looked as if it was part of his “jeans” pants. His boots looked cool and like actual boots!

Big Tex

Now, we entered the state fair with somewhat of a plan. I also had the forethought to print out a state fair map and find the ONE THING K HAD TO SEE and that was the Clydesdale Horses. They are the ones who pull the Budweiser’s truck/wagon/whatever that thing is. It took us a while to find that thing. Mainly because K couldn’t hear the directions I was giving him. I mean, I have a map for heavens sakes! Oh well, we eventually found them. They were so beautiful!!! They had several of the dalmatian dogs there with them.

Clydesdales dalmation horse

We also got a little turned around and ended up in the Auto Show building.

Nascar futurecar KiaRat

Throughout the day we stopped off to try some Fair Food. We both tried a funnel cake, fried snicker bar, a hotdog and a hamburger. I have to say that everything fried tasted like a funnel cake batter-breaded. I’m not a big fried food eater. Overall, I had a great time and I’m finally glad I can cross the Texas State Fair off my bucket list. Needless to say, we both took a super long nap when we managed to get home that evening. The drive home was just as traffic-conjested as the way to the Fair.

Our Vacation Experience with Oxygen

Living On Oxygen for Life

Keep in mind as you read this blog post that K and I are very experienced with traveling while loaded down with multi reservoirs of liquid oxygen. We are safe drivers and we take precautions before we head out on the road for vacation to ensure that our vehicle is in what we call, “Vacation Ready” mode. That means we take it to our favorite auto repair mechanic and ask them to look at our vehicle and make sure it’s ready for a road trip. We ask them to take a good look at the tires, brakes, belts, and to change the oil. They fix anything that needs to be fixed because we don’t want to be miles away from home and have car trouble. Thankfully, we have AAA (triple A roadside service) Membership.

Everything we need for vacation, including medical supples.

Everything we need for vacation, including medical supples.

When we plan a vacation, there are a lot of factors that go into the planning. The very most important factor is the location of my DME company in relation to my vacation destination. We also take into consideration whether there are any Lincare’s along the way. For the ones along our route to and from our destination, we could possibly set up a refill for my liquid oxygen reservoirs by asking my local Lincare office to set it up. The Lincare that I stop at for refills have to have the capability to fill liquid reservoirs. Some Lincare companies no longer do liquid oxygen.

This year we decided to find a beach that we’ve never been to before. We love the beach and for the past few vacations, we’ve only tried to rent beach house one other time. The only thing with this house that we rented on the beach was that it was on stilts. We didn’t realize the stairs to the house would be so darn steep. When we finally got the keys and drove the short distance from the office to our rental house, we pulled in and saw the stairs. We brought with us 2 – 100 pound reservoirs of liquid oxygen that weigh about 165 pounds full (but feel like you’re lifting a ton!). It took both of us, with K doing the lifting. I was standing behind him supporting his back with one of my hands pressed hard against him making sure he didn’t fall backwards. By the time we got that tank and the 75 pound reservoir up the stairs and into the house, we decided that the other 100 pound reservoir could stay in the vehichle since it was parked in the shade under the house. We were both sweaty and hot after that. It was so humid.

Oxygen vs. Stairs

We planned an extended vacation this year. My health has been declining. So, we both knew that I would need extra days when we arrived in Alabama and even in-between to adjust to the heat and humidity. It took me 2 days resting off and on before I could get outside and start having fun. K was super kind about not pressuring me to do anything that I didn’t feel like I could do. I arrived at the beach house with a migraine headache because the drive was stressful for me. The first day we drove we stayed overnight at a hotel. We came out the next morning and found one of our tires was flat from a piece of wood embedded into the side wall of the tire. Luckily, K had a tire air compressor in the back of the van and he aired it up enough to take it to a tire shop where he bought a new tire.

Flat Tire

The second day we drove, K stopped to fill the van with gas, it was my turn to drive this time. For some reason, as I was sitting there waiting for K to come back from the bathroom, the fuel light went on but the fuel gauge stayed at full. I don’t know what made me do it but I actually pushed the tripmeter to zero it out. At least I would know how many miles I’ve gone with the gas that I have in the tank. Anyway, the fuel gauge scared me by dropping all the way to EMPTY while K was a sleep. Ten minutes later, the fuel gauge would start raising back up to full and the light would go off. That was creepy scary. I let K drive after that. Apparently, there’s a wiring problem. Ugh!

After I was ready to get out of the beach house, I hit the beach! Even from the wrap around porch of our beach house on one day, we could see a few dolphins swimming off the coast!

It’s easy taking my oxygen to the beach. K had set up a tent with two beach chairs beneath it for me to relax and watch K wade into the water. When I wanted time in the water, K would either carry my portable on his shoulder and hold my hand as we walked into the waves OR he would have me connect my 50ft tubing to my portable and clip my portable to one of the beach chairs that he’d move closer to the shore. I’d bury the feet of the chair in the sand to give it more stability. I’d just need to sit my tank right in the seat with strap clipped to the top of the chair. Perfect! I could walk up to 50ft into the water or just sit on each of the tide.

Dolphins along the coast of Gulf Shores, AL

Dolphins along the coast of Gulf Shores, AL

This is how I sit at the beach under a tent on low beach chairs.

This is how I sit at the beach under a tent on low beach chairs.

Rocco would sit with me while I crocheted on vacation.

Rocco would sit with me while I crocheted on vacation.

We went out to celebrate my 47th birthday and our 24th Anniversary!

We went out to celebrate my 47th birthday and our 24th Anniversary!

We really had a good time on vacation. We didn’t want to come home so soon even though we spent 10 days in the beach house. I think next time we are going to try to stay longer. It all depends on how well my health holds up. *fingers crossed* YAY!