Little emergencies can be big problems.

Living On Oxygen for Life

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This was a bad moment at the doctor’s office today. The doctor recently started having an oxygen tank at her office because I told her it would be a good idea. You know, just in case. Well, today was that just in case moment when my tubing snapped off as K was switching my tanks.  We were all panicking until K remembered the recently acquired office oxygen tank (with cannula!) kept tucked away for emergencies. I had to hold my broken tubing onto my second full tank to try and get enough oxygen until they found another cannula. Thankfully, K moves fast and keeps a level head in a crisis. All I was in charge of was concentrating on breathing calmly until rescued. We have spare tubing in my van but that was in the parking lot 7 floors below. It would’ve taken too long to get it.

Life has a funky way of reminding me how fragile my body is but I can’t live in fear and never go anywhere. Lately, I’ve become a homebody because my breathing has gotten worse. I have to get myself out of the house more and I’m going I’m going to accept this challenge head on. Well, as soon as K fills my gas tank. I’ve decided that’s a “man’s job.” Honestly, I can’t handle the gas fumes. So, I have K fill my van for me.

What about you? Have you had some oxygen emergencies? Share your story in the comment section. Love y’all!

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*

Day Three — Tikosyn & the following month

Living On Oxygen for Life

By now, you probably realize that I went home with a seven day supply of Tikosyn. Hooray and Lucky Me! I get to be on another high-dollar Specialty medication that THANKFULLY my health insurance will cover. I’m kneeling down and thanking Jesus right now….and…. *amen!*

Getting Tikosyn from a pharmacy was a pain in the rear end because it is a Specialty medicine and it must go through the “specialty” mail order pharmacy which is different than the regular mail order pharmacy. I could have gotten my first month’s supply of Tikosyn through a regular pharmacy like a CVS or Walgreen’s but I would’ve had to pay $600 for the 30-day supply. Yeah, right. I don’t think so. I’ll do the little extra leg-work to get the prescription faxed to my “specialty pharmacy” myself. That’s what I did. I got the correct fax number, stopped off at a CVS, explained what I needed them to do (showed them my notes I took while on the phone with the specialty pharmacy while in my hospital room), and off the fax went into cyberspace to hopefully not get lost on the way. I called numerous times everyday until they could verify that they received it but it had one tiny problem on the prescription. There was no pill count on it, making it impossible for the pharmacy to process it. Now I had to somehow get the doctor’s staff on the phone with the pharmacy (each saying that the OTHER needs to call them first). OH! You’ve heard of that game too? Grrr… I finally got the pharmacy to put me on hold to dial the doctor’s number to correct the prescription. Finally, that’s taken care of which was great because I wasn’t going to go back into the hospital for 3 more days because they couldn’t iron this problem out in time. I had to have my 30-day supply within 7 days or it’s back in the hospital for me to restart Tikosyn.

Tikosyn is NOT a medicine that a person can take just whatever time she or he remembers to take it. Oh no! This stuff, I actually have to set my alarm clock on my cellphone at the same times everyday, twelve hours apart. Granted when I left the hospital, they had my doses at 4am and 4pm. If you know me like I think you should by now (okay… I’ll cut the newest readers a break.. Here’s your chance to learn something new about me. *cheesy grin*), I am a night person. I don’t like waking early in the morning because that’s when I get my best sleep. Makes sense to me too! So, over the first week and a half at home, I slowly bumped the night time medicine time an hour later every few days and adjusted the morning time accordingly. By the end of two weeks, my medication time was 7am and 7pm. That’s a bit more achievable for me.

Now that I’m good and into taking Tikosyn, I’ve noticed that my blood pressure is back to normal but I have increased shortness of breath which is very noticeable. I’m getting very discouraged because I went today to the Cardiologist who prescribed Tikosyn. He ran an EKG and said it was normal and that my shortness of breath isn’t from the heart medicine. If I got paid for every time I heard THAT sentence…well, I could buy myself a whole lot of ice cream with the money! Ugh! I just realized I’m out of ice cream too! I should have stopped on the way home. Drats!!!

My cardiologist said for me to talk to my PH doctor. Sometimes, I feel like I’m on a Merri-Go-Round without all the pretty horses to ride. Or is that a Carousel? At least I still have things to look forward to in life. It looks like Klondike, my rubber chicken will be off on another adventure next week and next month I will attend the PH International Conference. I’m super excited about both. My next post will be about Klondike’s adventure! Stay tuned in!

Be well! Don’t forget to subscribe to my blog so you won’t miss anything exciting!

A fun adventure to get me outside.

Living On Oxygen for Life

Sometimes it’s hard to get motivated to get my butt outside, especially when it’s either cold or hot outside. K likes for me to stay as active as possible while on my days of feeling good. He also likes for me to push myself a little bit (just a little bit mind you!) even when I don’t feel 100 percent. Ok, well, that’s virtually everyday but let’s not be technical about it, right?

So, what gets me excited enough to get out in my yard? Gardening! Not just any kind of gardening, you know… With flowers and what nots.. I’m talking about growing food! Now my yard isn’t big. K says it’s about the size of a postage stamp but I make it work for me. That’s right… I use raised garden beds and half whiskey barrels because, having Pulmonary Hypertension, bending down is difficult for me. This year, I’m growing potatoes (red & white), spinach, carrots, cilantro, thyme, chiles, Bibb lettuce, garlic and a few onions.

This year (2016) K built this raised bed for me to have more garden space.

This year (2016) K built this raised bed for me to have more garden space.

Last week we had 2 major hail storms that damaged our house and K’s car. I feel a little bad because my van was in the garage. hehe! Here’s a picture I took of the second storm. It was so loud!

This hail did some damage to our house and to K's car.

This hail did some damage to our house and to K’s car.

Thankfully, and quite unbelievably, my gardens survived both beatings! Maybe it’s because of the netting I have over them. I use it to keep out the bugs. I’m looking more and more like a farmer everyday! Even my dwarf orange, lemon, & lime trees survived.

My first attempt at growing carrots!

My first attempt at growing carrots!

My first attempt at growing Bibb lettuce.

My first attempt at growing Bibb lettuce.

Because I use a Bipap, I tend to have a problem with too much air in my tummy sometimes. When I eat iceburg lettuce or onions, it only makes the problem worse. I like salad but most salads have iceberg lettuce in them. I can eat spinach with no problem though. I thought I would try growing the Bibb lettuce as a way to eat a Spinach & Bibb lettuce salad instead.

I like to work around any problems that come up. I call it MacGyvering! Don’t forget to follow my blog to stay up to date with all of my adventurous moments. Happy Easter Sunday everyone!

Q & A video?

Living On Oxygen for Life

Most of you know that I’ve done YouTube videos about my Bipap or the “Meet Christine”, right? If you’d like for me to make another one, I’ll do a Q&A video if you send me your questions. They can be about me or about oxygen or just silly stuff. Keep them clean questions. Just message me or email your questions at goredrider@gmail.com when I get enough for a video, I’ll make one. Sound like fun?

I finally figured out what I wanted to do with the 3 large lemons my dwarf Meyer lemon tree produced. What’s better than freshly squeezed lemonade? It was so delicious! If only my tree grew more than 3 lemons!

I made lemonade from the lemons I grew!

I made lemonade from the lemons I grew!

Here’s the updated picture of my January’s Need a Hug afghan. Get yourself on the list of recipients if you feel in need of a hug because you’re having a tough time breathing.

January Need a Hug afghan Update

January Need a Hug afghan Update

GO Broncos!!! Need I say more? hehe!

Yes, I'm supporting Peyton Manning for the Super Bowl.

Yes, I’m supporting Peyton Manning for the Super Bowl.

I’ll be attempting more gardening this year. K is building me a raised garden bed that will be about 16″ high. The size of it will hopefully end up being 2’x 6′ and 16″ tall on the ground. I’ll be growing potatoes, Bibb lettuce, cilantro, and spinach this time. Also, the chives and basil are what I grow every year. I hope like crazy that I’m successful and that it doesn’t make me too tired. K is going to build this extra garden next to the tall raised bed. That way my oxygen tubing will reach just fine. He’s so thoughtful. He had to move all my half whiskey barrels to make room. Aww… he’s so sweet. He loves me but this is his way of trying to get me motivated and outside so that I don’t become sedentary which would make my lungs weaker. I don’t need them any weaker. Trust me on that. erg! I’ll take pictures of the garden progress and blog about it! It will be fun!

So send in your questions and I’ll try to answer them. Think of it as a way to get to know me and remember, no question is a dumb question. If I can answer it, I will. Just keep in mind that I’m not a doctor. My answers are based on my experience during my life. Have a great week!!!

2015 Happy Jar Revealed…. she opens the jar!

Living On Oxygen for Life

Happy Jar

Happy Jar

This post is more about becoming more motivated about living life while on oxygen. It has shown me that even though my year was filled with challenges, I still had many happy moments to add to my Happy Jar.

This is the happy jar that I made for my 2015 Happy Jar project. I filled it with written down happy moments that happened for me throughout the year. I’m now reusing this jar for my all-exciting happy moments of this year [2016]. If you’d like to read about what Happy Jars are used for, click and read my post that I wrote titled, Happy New Year!! It’s nearly 2015!.

Today, I dumped out the 2015 happy moments and started to read through them. Last year was a tough year for me. I struggled with motivation and breathing problems. With all of that going on, I didn’t think that I had slipped very many “happy” moments in my Jar. As I read through the “moments,” I found myself smiling while I remembered the fun and exciting times I had. This “Happy Jar” has been a great idea! In fact, I’m hoping to fill it up this year!

I hope you created one for yourself last year with me. If you didn’t, start one now! It’s not too late. You don’t have to be super creative with your jar. Mine is a clean Spaghetti sauce jar that I ran through the dishwasher and then painted and used polymer clay to decorate it. Give it a try and do it your way!

I thought I would share my happy moments with you. Let’s see how many I have. Maybe you will recognize some of them! Granted… not every happy moment of 2015 made it in the jar. It was fun pulling out the papers and reading the things I nearly forgot about that happened.

HAPPY JAR 2015

    ~ I just made a batch of Oatmeal Scotchies (cookies) and cleaned the mess. AND I’m not even tired from it! Hooray!
    ~ Results are back on the CT Scan. My aorta is only 4.3cm instead of 5.1cm. YAY! Whew!
    ~ Going to Oklahoma for 5 days for my birthday/anniversary!
    ~ I finished an afghan for my cousin’s baby! I love babies!
    ~ Made Rocco some doggy biscuits- homemade! He loves them!!
    ~ I finished the family Christmas photobook. I ordered an 8×8 book just for us to see how well it turned out. Can’t wait!!
    ~ My mother-in-law gave me a gift of a t-shirt that’s black with blingy cats. I LOVE IT!
    ~ Sore from painting last night. So, I made brownies as my motivational reward. Then, I continued taping trim and walls! Happy Day!
    ~ I finished my Happy Jar (added the cat on the lid) and made decorative papers for my Happy Jar! So Happy!
    ~ I sent an afghan to one of my parents! He wanted my name and date on it. Awwww!
    ~ I went to the doctor today to get the paperwork started for a new Bipap! Saw K at work, mailed a Need a Hug afghan, and then made dinner in the crockpot & cleaned up the mess. SUCCESS!
    ~ Family came for a visit and they tested out the Margarita Machine I got K for Christmas! Great weekend!
    ~ I’m so happy. K and I finished painting the family room walls, hung curtains, and pictures. Then cleaned our mess. It looks awesome!!
    ~ Klondike goes to Paris with sister and her husband.
    ~ Pictures are now coming in from Paris! Klondike is having a blast!!!
    ~ I finished Klondike’s Adventure in Paris photobook that I made for my sister as a thank you for taking Klondike on their vacation.

What a day yesterday was…

Living On Oxygen for Life

By some chance and probably by miracle, I was feeling fantastic yesterday. It was probably because I knew.. I just KNEW Santa was coming in a few days! I mean, I’ve been good. Haven’t I? Let me think about it.. ok ok… I’ve been pretty good. Well, anyway, I’m holding out hope that Santa is coming this year. *stomping foot* For sure!

I rolled out of bed and hit the shower to end up at the lab to pray that the lab order was in their computer system like it was suppose to be. Guess what? It was!!! (shocker.. I know!) Ok, so the lab technician had to stab me twice even after I told her not to stick me where she went first. I was showing her where the sweet spot on my arm was the whole time. I swear I feel like I need a little target tattoo on my arm for all the lab techs to know where to draw blood from me. For those of you who have to have lab work on a monthly basis, you know what I’m talking about.

After that was done, I actually still had energy left over. So, I went to Walmart. I can hear you all saying… “Are you CRAZY, Christine???” Um, yes, I probably qualify as being not the brightest bulb on the string of Christmas lights. In my defense, I had to get some stocking stuffers for K and a couple of things for dinner. Ok, I am getting to the point of this blog post. So, listen up. Keep reading… or wake up! Just pay attention… Yes, it’s about Walmart.. indirectly.

I was at Walmart circling the parking lot for what seemed like an hour when I THOUGHT someone was getting into their car to leave. I saw them from the corner of my eye. So, I’m not even sure I saw what I saw. I waited and I waited in my van thinking this dude is going to back out and I’d get a GREAT parking spot. And I waited and waited some more but I looked closer and couldn’t see anyone in the car! So, I pull past the car and what do you know? The person finally decides to back out but I’m far past him now! ARGH! But don’t worry, I eventually find another good spot to park and finally make my way inside. Let the shopping begin!

I’m making my rounds through Walmart.. through the toy section, through the movies section, I closed my eyes to bypass the yarn section (sorry yarn, you know I love you!), and I’m standing in dog aisle looking at all the toys. I heard this child wailing near me. They were in the Customer Service department. She was probably about 9 years old with no shoes or socks on (don’t worry.. it’s in the 70s here still) and her father was pulling her arm, telling her to be quiet and to stop going on like that. That he’ll take her into the restroom… I didn’t hear what he said after that.

I briefly looked at them. I was at a total loss at what someone would do at that kind of moment. I was deeply moved to say something. I could tell something was different with the child. I was a little worried at his tone of voice. I didn’t know if he would hurt her. I moved to the adjacent aisle where I could hear him but couldn’t see them. I had that internal battle of “Should I do something, say something or should I not?” I closed my eyes and was like, please God, tell me what to do. I opened my eyes and the man and child walked to the aisle that I was in and stopped. We looked at each other and I just opened my mouth and out came… “Having a rough day?” and he said something about her not having any patience. I was thinking that maybe he was the one with no patience but I didn’t say that. His daughter (I assumed it was his daughter) was staring at me. I asked the man if she has Autism. He said a really long name and that it was form of Autism. I asked her if she was looking at my oxygen. So, I told her about it and that it helped me breath. She walked over and felt the tubing. We started getting into other peoples way so we ended the conversation by saying goodbye and waving. I told him to have a nice day. When they walked away, I noticed that the girl was quiet now.

This gets me wondering about all the crumby days this last week that I’ve had with bad breathing only to have ONE good day, yesterday, and I end up in Walmart at exactly the perfect time to help distract a little girl so she and her dad could calm down. It makes all those bad days seem not so bad to have been able to help someone a little. I’m so thankful that I had a really good day yesterday to be able to get out of the house. It gave me a chance to be kind to someone else. That’s what living is all about. Be kind to one another.

Stay well everyone. I want to wish everyone a VERY Merry Christmas and a Happy New Year. I would love to hear your thoughts. What would you have done? Or have you ever experienced a moment of “Should I say something?” Has your oxygen ever helped you in an unusual way? I love hearing from you! *hugs*