Taking Adempas Begins – a PH medication..

Living On Oxygen for Life

I’ve been living in a fog of a migraine since Friday. The day the Pharmacy nurse came to my house to explain all the ins and outs of the new medication that I was about to start taking. It’s called Adempas (riociguat <– don't ask me how to pronounce that!) and it treats two types of pulmonary hypertension in adults. You can read more about this medication by clicking on the red link.

I’m so glad that K had bumped up our date night from that Friday night to the night before (Thursday) because I wanted to make sure I was feeling well rested for the whole fun experience of seeing Spectre in IMAX! It was so awesome! We even got two FREE movie posters for seeing it in IMAX which I thought was super expensive. But, hey, it was date night, right? It’s not often that I can get K to take me to a movie for date night. We already have our next movie picked out and we are both super excited. *drumroll, please* We are going to see Star Wars!!! I’ve waited 30ish years for this moment. FINALLY they made the Star Wars VII movie. I want to dress in character but I’m not sure if I’m going to yet. Wouldn’t that be so darn fun?? Ok ok… I’m getting way too distracted.. back to Adempas.

So, like I was saying.. the nurse showed up at my house and we went through with filling out all these health forms. You know the ones… What medication are you currently taking, what medication are you allergic to, and then the fun ones began. I always dread this one category of questions: Health History. Are you serious???? Don’t you have that already in your data bank since I’m already taking Tracleer which is another PH medicine? Yeah, I seriously thought that. No, I wasn’t rude enough to blurt it out but I did take a deep breath (well.. as deep as I could, anyway) and started listing off the “most important” health conditions that I have. And then he took my blood pressure to get a baseline reading before I started taking Adempas. One of the side effects of this medicine, which could or could not occur is low blood pressure.

All looked A-Okay with my blood pressure (I never had any doubts about that!). Then he did what I was hoping he wouldn’t do… he opened my medicine and had me take my first dose. *pout* I wanted to wait until today (Monday) so that I could have a relaxing weekend. It didn’t work out to be. The nurse took my blood pressure every 15 minutes to make sure it stayed within normal range. It did! Yay! Like I said, never doubted. haha! But something did happen later that day which made the whole experience blow. grrr!

Maybe it was bad timing? Or maybe it is my body adjusting to this medicine. Since Friday evening, I have had an awesome sized migraine. I still have it. Usually they can last 3 days on average. If this is from Adempas, so far, this is the only noticable side effect, that I’ve experienced which makes me want to count my blessings. I’m starting out at 1mg, three times a day, 6 hours apart (I was hoping to start at the .5mg dose). Yep, I have to set my alarm to remember when to take it… and crap.. it’s almost time to take it again. Ugh! I am pretty sensitive to all the PH medicines. Tracleer has been the only PH medicine that my body has been able to tolerate. Hopefully, adding Adempas will give me good results and can be tolerated.

Meanwhile, my sister and her family are coming down, we still need to hit the grocery store (desperately!), and I’ve only had the strength to do simple household chores over the weekend. I’m not complaining, even though it may sound like I am. Life happens and it happens to have more potholes in the road this year for me. Or so it seems. It’s all in the way we look at life. I can either look at the rest of this week as a mad scramble to get thing ready for this weekend or as a complete excitement to see my family and my darling 5 year old niece. Seriously… you know which one I’ve chosen, right? *wink*

Be well everyone and stay in touch. I have recently become a Guest Blogger at http://www.freshairmedicaloxygen.com (Fresh Air Medical). I answer questions and talk about oxygen there. I have not used them as an oxygen supply company but I’ve heard they are a good company to do business with. They have their customer’s best interest for their oxygen needs at heart and want to provide them with a community feeling with their blog. I’m glad I can help in this endeavor.

So, uh, are you ready for Thanksgiving? What about Christmas? Lots of love to you all! *big wave*

Need a Hug?

Living On Oxygen for Life

Ohmygoodness… It’s Monday and the day needs to have some good news in it. Right? YAY! Of course I’m right. Well, let’s get on with the good news part. I’m so excited!!! Now I know you all thought the “Need a Hug” giveaway was over… and you are correct. In a way. What I mean is, for those of you who sent me an email saying that you need a HUG and want to participate in the giveaway… well, your name is STILL in handy-dandy heart-shaped crystal dish waiting for an afghan to be made JUST FOR YOU! Entries for this giveaway were accepted from January 1, 2014 thru December 31, 2014.

I’ve always loved handmade gifts. I think they are extra special. It means someone put a lot of effort and love into making it just for me. These afghans are handmade for the soul purpose of wrapping you up in hug on the days when you need a little extra boost. Below is the picture of the 3 afghans I’m ready to send out. The monochrome one is my favorite! After these are sent out, I have 4 names left.

I have been incredibly busy lately painting, painting, and more painting in our house. I’m so tired of painting. I have to do it slowly but I NEVER thought I would be a lot faster at painting than K. He paints at the speed of a snail. He’s a perfectionist (OCD) but that’s not saying that I want to do a sloppy job. It’s like… come on… put a pep in your step mister! haha! Sorry, that was my complaint for the day. We use Valspar the higher grade and I seem to do well with the lower smell of this paint until I’m in a corner where there’s little airflow. Then, K is turning on fans, opening windows (even when it’s cold outside) and I’m taking a layer of clothes off down to my t-shirt & sweats. Painting makes me really hot because I’m burning energy and my heart races. So, I paint some and then rest some.

I hope all of you are having a great day and a great beginning to the week. Stay well and if it’s still cold where you live… I’m so so sorry. *sending warm Texas breezes your way!* And as always, you can reach me via email: goredrider@gmail.com or Facebook, Instagram, and Twitter (not so much on Twitter!).

[2015]

Update about this and that…

Living On Oxygen for Life

I am so excited! I finally finished my Shutterfly Christmas Family photo book and I’m eagerly awaiting for it to come in the mail. I thought it would be here today. I actually had K leave his mailbox key for me so that I can check the mail myself. That’s how excited I am. I don’t check the mail normally. To do so would mean for me to fill up my portable and walk across the street in the rain and freezing cold weather. Don’t call me lazy! I’m preserving my health and conserving my liquid oxygen. And no, I can not walk across the street and back without using my oxygen. Just not safe or wise or logical. Unfortunately, it did NOT show up today. I am sad. I’ll just be that much more excited tomorrow when it BETTER show up! Grrr! Even my Amazon order didn’t show up today. It must be all that “inclement” weather we’re about to have… or at least that’s what was texted to my phone. *sigh* I’m so impatient. hehe!

In other news, I got my second Vericella shot. So maybe now I am safe or safer from getting Chickenpox in the future. *shrug* We shall see! I also got back my lab results for my Thyroid Stimulating Hormone (TSH) and was SHOCKED by what I read. (More about that in a minute…) Remember back in August of 2014 when I was admitted into the hospital because I was super short of breath? They tried to tell me that my heart medicine was causing me to become Hyperthyroid but I didn’t believe them. You see, my heart medicine has the possibility to make me HYPOTHYROID not HYPER… thyroid. I do believe, and I told the doctors this, that the cause of my Hyperthyroid was from taking Opsumit. I had been taking and still was taking Opsumit, the newest Pulmonary Hypertension medication available, for 3 months prior to landing in the hospital. It’s the only thing that had changed in my health care. Over the course of those 3 months, I had slowly developed worsening shortness of breath to the point where I could hardly talk without getting short of breath. Since leaving the hospital, I had switched back to taking Tracleer and started to see an Endocrine doctor to straighten out my thyroid problem.

Back to my lab results… The normal range for my TSH should be: 0.40-4.50 However, since I’ve been on Thyroid medicine and off of Opsumit, my TSH levels have definitely changed. Now my levels are: 14.75 I was like, what the flimm-flamm is going on?!?!? *throwing my hands in the air* I know you’re picturing that. *wink* It all becomes a little clearer to me now. For the past week or so, my breathing has been way off and my heart has been racing when I do mild activity. Ugh! I’m ready for this problem to be under control.

I know there are people out there who use oxygen and struggle with it. By writing this blog, my hopes are that when you find it and read it, I can help you in some way. If you know of someone who does use oxygen, let them know about my blog or my Facebook page. Y’all are NOT alone and you shouldn’t feel like you’re alone just because you have to use oxygen. *hugs* I enjoy your emails! Keep them coming! goredrider@gmail.com

[2015]

Pro or New to Oxygen? Read this…Maybe you didn’t know this.

Living On Oxygen for Life

There are many of you who are new to using oxygen but also those of us who are practically pros at oxygen use. But there is a topic that is important to talk about that even some pros don’t realize at how important it is. I may be saying things that you already know but bare with me. I’ve had a few people who have asked about this topic who just didn’t know that they should be doing this. Ok ok.. I will just jump right in and not prolong this mysterious topic.

If you are reading this blog you either were prescribed to use oxygen, whether it’s 24/7 or just during exertion or with activity, OR, you have a relative who uses oxygen in this way. Ok… I know you are probably thinking.. “Get on with it.. spit it out already!” Whew! I’m getting there.

What I’m leading up to is this: No matter how you were prescribed to use oxygen (24/7 or as needed for activity), taking a shower in my opinion is considered an activity AND in my personal opinion you should use your oxygen while you shower. Think about it. Do you get light headed if you are taking a shower and not using your oxygen? Feeling a little tired and/or woozy? Maybe you feel a bit like you may faint or pass out? Are you feeling like washing your hair is wearing you out? It’s humid in the shower. What would you do if you actually fainted in the tub alone all because you didn’t use your oxygen?

Whatever type of oxygen machine or tank you use, you can still leave your machine or tank in one room and use a 50 foot tubing to run all the way to the bathroom. The tubing can get wet..even submerged. I gather up enough slack in the tubing and drape it over the side of the tub and it lays on the bottom of the tub while I shower. When I’m done, I use a towel to dry it off. It’s that simple. By using oxygen while you shower, you aren’t taxing your heart as you would if you didn’t use it while you showered. After all, it’s all about staying safe and healthy. So be safe.

Check out my Living On O2 for Life Facebook Page or my Instagram. The links for both are in the right column… Over there —>

Love to you all!

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!