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. 

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We are a strange couple…

Living On Oxygen for Life

Sorry! I started writing this on November 8th and I’m just now finishing it up for y’all. Enjoy!

Yesterday was amazing! I got up early. No, I am talking EARLY, like, before the worms wake up to be eaten by the birds kind of early. K and I are complete opposites. He calls us ying and yang. We are opposites but we fit together in a weird way. He’s OCD and I’m ADD which can cause some problems if you can well imagine but we have this special quirkiness that makes us work.

You see, the day before yesterday (Thursday), I had to take K to his eye exam where he had his eyes dilated so he needed a ride home. I spent the time (boring time) waiting in the lobby of the optometrist wondering just how long it takes to do an eye exam. That’s when a little boy walks over to me and ask what was in my nose (referring to my tubing). I told him simply that I have this tubing that gives me oxygen from this tank. It helps me breathe better. I then, of course, complimented him on getting some Superman stickers on his shirt. Later, I overheard one of the receptionist talking about her son having respiratory problems. She didn’t get her son a flu shot last year and she was planning on getting him one this year and the pertussis vaccine. She was telling the other receptionist that her son can get a simple sore throat and then overnight she’s having to take him into the emergency room with something so much worse. I told her that I was the same way especially as a child. (I know… I butted in and it’s probably a rude thing to do.) I have to catch a sore throat early to prevent getting worse since I also have respiratory problems. We talked about 20 minutes and then K came out ready to check out. That’s when we saw one other receptionist’s nifty watch which we oooh’d and ahhh’d over. The optometrist told him that he needed progressive bifocals. He feels old now. Poor guy.

Anyway, before I get way off subject, let me steer back to what I’m trying to tell you. Ok, let me regroup my thoughts for a second…. Oh yes! I woke up early on Friday, took K to work because his car was left at his mom’s house and I needed my van to go get my monthly labs done. Oh the joys of taking Tracleer. Just before he got out of the van at work, he said, Chris (that’s what he calls me), let’s have a great day. And I was like…. Okaaaay… In my mind, I was thinking of all the things I had to do that day but then he did something fun. He raised his fist and told me to fist bump to seal the deal but I went one step further… haha! It makes me laugh just thinking about it. I said we have to “Wonder Twin activate or it won’t count with the explosion sound and fingers spread out afterwards. You know what? He did it and that made the beginning of my day SO awesome!

I drove all the way to get my labs done and found out that my standing orders were NOT in their system. They were NOT faxed according to their computer. I had emailed my nurse just 2 days prior to confirm that they were faxed and she said yes they were and that I didn’t need to take the paper orders in. Just go get my labs done. Big, big mistake. Next time I will take my paper orders. Phone calls had to be made from the lab and I ended up sitting around there for over an hour. However, I rewarded myself with a Egg McMuffin and a hash brown from McDonalds and all was much better afterwards. I went home watched a Netflix movie, ate lunch and took a power nap because I still had to go pick K up from work. By the time I was ready to go at 2:30 o’clock, K texted me saying start heading his way and, of course, there was a major traffic jam. Typical! Once I got through the traffic, I burned rubber down the highway, but safely! I arrived right on time! Wheww! Then, he informed me that the place we were ordering his glasses was located in the mall. UGH! The mall???? I really wanted to stomp my foot but remembered that were suppose to have a Wonder Twin power good day. So, I put on my happy face and said, “Love to! Let’s go!”

K was pretty sure the Lens Crafters store was located near Dillard’s. So, that’s where we parked my van. We decided to not use my wheelchair because, hey, the store is just right there, right? Oh heck no. We breeze through Dillard’s to only find out from the directory that the store is on the other side of the freaking mall. I told him that I could do this but we may have to stop here and there. As we’re walking through the mall, we were looking in each store and I pointing out the boots and outfits I like or thought would look good on me. I’m not a shopper. I don’t like buying clothes for myself until I’m in clothes buying mood which is not very often and then on top of that, I’m pretty frugal. K hates that. hehe! We were walking and walking and walking… *sigh* I would stop to look at the clothes in the window of a stop to give myself a break from walking. I get short of breath while walking the mall. I was saying in my head that this outfit looks good and that one over there was awesome but then we get to a store that made us both ask each other if we were getting old… I mean, what were those designers thinking or smoking? Ugh!

Finally, we get to Lens Crafters and it took forever for K to pick some frames. We sit down with a sweet young lady and we got to talking. I don’t know what it is about us that brings out the fun side of people but this woman was telling us that she just adopted a stray kitten that she named Ms. Tickles who happens to be a boy kitty. The poor thing is going to grow up having some sort of complex. We had a good laugh in that store. That is until the sticker shock freaked me out. Yikes! We took so long in the store that I darn near ran out of oxygen in my portable but I made it back to the van. It would have taken K longer to go get the van and drive it around the mall to pick me up than for me to just walk back.

It was a good day but busy. Home Depot was our next stop and I think we scared a woman at first because we were in the “self checkout” lane because nothing else was open. Typical! Anyway, there was a security camera screen right there where you scan your purchases. I pointed it out to K and I was waving and smiling at it like a looney person, I’m sure! That’s when K stepped behind me and strangled me like Homer does with Bart Simpson. I was playing it up good too. I should’ve gotten an Oscar! It was so funny. Well, until we realized we had an audience. The poor lady. I looked at her laughing and then pointed at her saying, “Witness! I have a witness!” Of course, she realized that we were playing and so she told us that she didn’t see a thing. haha! We are a strange couple. I mean, K lets me stand on the end of the shopping cart to push me around the store so I won’t get overly tired. The only thing that could have been better was if my portable wouldn’t have frozen up when K refilled it from the reservoir that I keep in my van just before we went to eat dinner. Life sure is crazy. Isn’t it?

We need YOU to spread the AWARENESS of Pulmonary Hypertension!

Living On Oxygen for Life

Hello to November! It’s finally cool weather. I never thought this day would come here in Texas. There is something else exciting happening in November! Oh yes… exciting, indeed! November is the month designated for Pulmonary Hypertension Awareness. So, get out your Periwinkle or Purple clothes and support PH for the cure!

Seriously, we need your help. Did you know that Pulmonary Hypertension is a incurable disease… that means, there’s no cure.. YET! With YOUR help, by spreading the awareness of this disease, you can, not only help others to become educated about Pulmonary Hypertension, you can be saving someone’s life. Did you know that Pulmonary Hypertension is often misdiagnosed? For example, a lot of people with PH, before being diagnosed, just think that they are out of shape or their doctors think they have asthma or just extra tired. PH is a serious disease that can kill within 3 years of being diagnosed without medical treatment.

I don’t mean to scare people. I mean I have this disease. There are only 12 approved medications to treat Pulmonary Hypertension. That’s not nearly enough. Double lung transplants can cure you but how many people out there have signed up to be a donor? Are you one? If you are and I could be approved to have a transplant (which I can not), I would thank you from the bottom of my heart.

There are several ways to read up on Pulmonary Hypertension. You can visit Pulmonary Hypertension Association or visit PHAware.

I want to add a SHOUT OUT for two websites that sell some pretty awesome PH jewelry. PHantistic Jewelry and Josephine’s Jewelry. I’ve bought from both of these lovely ladies and they make some awesome jewelry for a price you can’t beat! Support Pulmonary Hypertension Awareness and wear that periwinkle or purple!!!

Supporter of PHA
Women are 4X more likely to develop idiopathic pulmonary hypertension (IPAH) - know the symptoms - infographic