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. 


A step forward…

Living On Oxygen for Life

Life is starting to calm down for me again. I made it through the doctor appointments and even the over-night sleep oximetry test. I don’t have the results back yet but I know when I get up out of bed without my bipap and oxygen on, my saturation drops to 75 within about a minute of time. Yikes!

I’m still awaiting word from my health insurance about whether they will approve Tyvaso for me. I read that it costs about $100,000 annually for this medication. I’m not sure how that price is justified. It’s highly outrageous. All I know is that if or when (gotta stay optimistic!) the insurance approves Tyvaso for me and I start taking it, there is suppose to be someone who comes to my house to teach me how to work the battery powered inhaler. I’ll have to do this inhaler 4 times a day, 4 hours apart. My husband tells me that I should start setting timer alerts on my cellphone so I won’t miss a dose. I am so terrible about remembering things.

I hope everyone has a lovely week. I’m finishing up some of my afghans. One for my sister and one I’m saving for an auction. I’ll be starting a new one soon. Below is a picture of the one I’m making for my sister. I’ve got all of the pieces sewn together now. Don’t forget to FOLLOW my blog!


This past weekend…

Living On Oxygen for Life

I have been in such a writing mood lately! Isn’t it great? I even made some Vistaprint “business cards” representing this blog. I intend to hand them out to people who approach me asking about my oxygen. Many of them know of someone who has oxygen needs. So, I just want to offer them a way to learn more about using oxygen if they are a first-timer or if they are just curious.

This weekend was so fun but very tiring. My older sister came down with her nearly 3 year daughter and my husband and I got to babysit for about 4 hours. There is NO way I could have babysat on my own. I don’t have enough energy stored away for that kind of activity. My niece is one bundle of energy. My sister and her family stayed the night with us which was a blessing because it’s hard for me to travel to visit with them. After they left to go home, I crashed hard! I think I napped for 4 hours. Then I got up to take my diuretic, potassium, Symbicort and Tracleer medications. When the diuretic cleared through my system (two whole hours later), I crashed again. I’m not ashamed to take a nap. I know better to ignore my body. If I didn’t get the rest I need, I tend to get too tired. If that happens, my body fights falling asleep and then I will be so messed up. I wouldn’t be able to fall asleep which can lead to respiratory distress.

I’d like to share with you a subject for one of my next postings that is dear to me.  It’s important to realize that the closest people in your life (spouses, parents, or significant others) are going through challenging times while living with someone who has physical limitations.  They may not walk in your shoes but they have their own unique challenges as they live with or are related to you as they try to understand what you go through on a daily basis. With the next blog posting, I’d like to let you know how my husband copes with my health condition. We can’t ever forget about how their coping is important to those of us who have health problems as well as themselves. I’ll do my best to talk about it. It’s a difficult subject but it’s one that needs to be out in the open. Both for the shoe wearer and the one who cares for them.

Click the FOLLOW button to know when I post next! — Christine