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Living On Oxygen for Life

Stress..the final frontier..for which no man (or woman!) wants to experience. Did that even make sense because I can’t tell.. I’m too stressed out. Over the last three weeks, I have literally hit the maximum overload point in the amount of stress my little body can handle before I start feeling physically sick. Chest pain, heart beat skipping, and downright depression hit pretty hard. But, let’s not go there.

I played phone tag a lot last week trying to find out when my doctor can schedule me in his itinerary for trying Tikosyn. He finally got back in town last week. I called him last Monday to let them know… “Hey, I’m still here waiting on an answer..” I had to leave a message. I really hate phone tag. So I sent an email too. You know, just in case. I finally get a call back from the doctor’s staff saying they’ve been discussing my case and they think the doctor will have an opening to be available to the hospital for the 3-day stay requirement during the last week of April. I told her that I’ll be out of medicine soon and I’m already splitting the pills in half. Her answer was that I’d have to be off the medicine completely for 2 to 3 weeks anyway. Personally, I think we’re cutting it a little too close for my comfort. Between now and then, the doctor has other out of town conferences to attend. What will happen while I’m off Cordarone and I have a rhythm problem and he’s out of town??

Meanwhile, K and I have decided to track down and purchase Cordarone from Turkey so that I’ll have something to fall back on if my body can’t tolerate Tikosyn. It hasn’t arrived yet but it’s been shipped. *fingers crossed * that it’s the same brand name Cordarone that I’m currently taking.

Right now, I’m not feeling any bad effects of being on just a half dose of Cordarone a day. My heart is skipping a little but I’m ok with that. As long as it doesn’t get worse or something doesn’t cause a lot of stress for me, we hope I’ll do ok.

I really wanted all this settled before the PH Conference in June because I’m super excited to be going with K. I’ll be hopefully giving away my favorite Need a Hug afghan that I just completed. It really is lovely!

This the Need a Hug afghan I wish to give away at the 2016 PH International Conference

This the Need a Hug afghan I wish to give away at the 2016 PH International Conference

Why?

Living On Oxygen for Life

I’m feeling really emotional right now. I get this way when I have a migraine. It’s really strange. While the pressure and pain is so bad in my head and neck, something always breaks through that tough-girl exterior and tears start rolling.

This time is no different. I wanted to distract myself. So I picked up my phone while I’m still lying in bed and scrolled through Twitter. One post caught my eye. A 3-year boy had just died from Pulmonary Hypertension and a hole in his heart.

First, I was so sad for this child. Then, I got mad for this boy and then, I was confused. Here I am at 45 years old. I was born with 2 holes in my heart and with PH as well as some other major complications such as Scoliosis. There wasn’t any PH medication when I was a child. The doctors didn’t send me home with oxygen until I was 17 years old.

This is where I get confused. Why am I still alive and this precious child is not? I know my parents weren’t rich but they always found me the best doctors they could get me to. I’m sure they prayed A LOT over the years especially during surgeries and bouts of pneumonia.

It’s so, so… I don’t even know how to describe it, other than to say it’s almost mysterious how one person’s life connects to another and then to another. It’s almost as if we could be holding each other’s hand in a cosmic way. A chain of events. So, why did I survive when others did not? I’m not vain about it. I’m not more special than anyone else.

I may not see the reason in my lifetime. Perhaps, when I do die the Lord will hold my hand, turn me to look back on Earth and point, saying, “This is why.” I sure hope so. I just have to keep the faith and have a whole lot of patience. Until then, I’ll just keep on blogging.

I know that was pretty deep stuff. I told y’all I get emotional. At least I got that off my chest and now I hope I can start feeling better. I’m so ready to feel better.

What do you mean 24/7?

Living On Oxygen for Life

I’m trying to think back to how long I’ve used oxygen 24/7. That’s 24 hours a day, 7 days a week. It’s been many, many years. Let me think…It was definitely after I got married. Though I was still on oxygen. I started when I was 17 years old. But, I started using oxygen 24/7 in probably 1993. Ok Wow! That’s 21 years. Yep, I just did the math. It’s amazing, right? This shows us that we really can live a long time even though we need supplemental oxygen. I keep looking at that 21 years and it’s making me smile. All the fun, goofy things I’ve done and all the adventures I’ve been on over these past 21 years have been so crazy fun.

When I say that I use oxygen 24/7, I mean that I’m always using oxygen whether it’s to water my plants outside or taking a shower. I get in a swimming pool, put make up on, clean the house, and basically everything else a person has to do to live and have fun. I don’t worry about being in water with my oxygen on. Water won’t get into the tube. If I’m using my portable and I’m at the beach, I put my portable oxygen tank in a plastic bag. My husband digs a hole in the sand and drops the portable that’s in the bag into the hole and then covers it with a towel. I use a 25 to 50 foot tubing attached to my portable tank and then I wade out into the water! It’s so fun but I have to be really careful to make sure no one else who’s on the beach trips over my tubing. We usually pick a spot on the beach where no one else is around or go to the beach early in the morning or late in the evening. If there are a lot of people on the beach, K will hold my portable, take my hand and walk me out into the ocean so that I can get in the water. I do NOT swim. I’m totally scared of water. I drowned once when I was about 2 years old and I think that has A LOT to do with why I have a massive phobia about water. It’s really inconvenient because I think swimming looks really relaxing. Though, I will float in a blown up tube!

I do take my oxygen off when people are taking my picture but not always. I’m not able to stay off my oxygen for more than a few minutes without really suffering from my oxygen desaturating.

I’ve been so busy lately. K and I are having a few things done on our house and it’s taken up so much of my time that I’ve not been able to blog lately. Hopefully with most of the house projects finished, I will be back in action again on my blog. I do apologize. I have been on Facebook, email, and Instagram because I can write from my phone and iPad. So, I’m still here!

My newest “Need a Hug” giveaway is posted! The deadline to enter for the afghan is June 30th, 2014 at midnight. I hope you will enter! Lots of love to you all!

I want to share this song with you… my friends!