Hello, my name is Christine. I use oxygen 24/7 and I’m 45 years old. I didn’t always have to use oxygen. It all began when I was 17 years old. It was a monumental change in my life. Since I was just a teenager at the time, it hit me hard. I’m hoping with this blog that people who also use oxygen can see that life isn’t over just because you need oxygen. I think the hardest part for me was accepting that I’ll never live without it again. Once I jumped over that hurdle, life began to change. For the good.
So with this blog… and for all those who are interested in knowing how I live with oxygen needs, I’ll post what I know in hopes that it will help others. Spouses & families too! I am married and what I’ve gone through since I was 19 years old, he’s gone through too with me.
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Hello everyone! Wow… time sure does fly quickly. Doesn’t it? Well, I guess it seems kind of slow if you are snowed under. I hope you have sunshine by now. It’s starting to peek out more and more here in Texas. It is amazing how much a little bit of sunshine can change a person’s mood… from rainy-gloomy-cabin-fever blues to rip-the-doors-off-the-house-and-let-me-at-the-glorious-sunshine happiness. This Winter has been a heck of a roller coaster. So, I guess Spring has sprung and all that sweet sunshine has brought our daffodils up and blooming. That is until someone came by and cut and stole them from our front lawn. K was crushed. All that work and now it’s like he has nothing to show for it. The thing is.. he told me that he would have been happy to give them to whomever wanted a few if he’d just ask for them. K would have felt like someone sweet, other than me… of course *wink*, was going to enjoy them and appreciate his effort. But no… someone stole them. I’m a little worried about the tulips that are starting to come up. As you know, daffodils and tulips, make their appearance once a year in the Spring and they are beautiful. Majestic, really, which makes our next outing plans super exciting. It’s a wheelchair adventure with my new camera I got for Christmas! Thank you Santa!
We are going to a place that is GLORIOUSLY filled with tulips, daffodils, and so many more types of flowers. The last time we went to appreciate the flowers was about 5 years ago. Here’s two pictures that I took there.
Taking pictures with my Nikon dslr 5200 camera is something I LOVE doing. It’s something that is easy to do while having to use oxygen. It doesn’t take a lot of energy unless I am having to move about a room like at a wedding reception. I like taking candid, spontaneous pictures of people in the moment instead of posed people in a group picture. But nature, by far, is my favorite to photograph. K has really developed an eye for photography. Sometimes my hands are too shaky because I get tired or my oxygen saturation drops and that gets me frustrated because pictures can blur. So, K will drag the tripod around with us if I end up needing it, we’ll have it handy.
So, what am I really like? You read my blog. Do you wonder… what is she really like in person? Here’s a bit of a weird bio.. I’ll try to add a little bio each time I remember!:
I have to say that I am pretty goofy.
I’m afraid to tell you that I can be a bit cranky or fussy when I’m tired but who isn’t, right?
I read a LOT! I should list the books I’m currently reading or at least, the books I’ve read that I think are good. I get most of my books through Amazon and read them on my Kindle app on my cellphone. Did you know that they have a boat load of free books? Just use the filter to look at the LOWEST cost books first. (you’re welcome for that tip!).. Thank you Thomas K., my Scottish friend! *wink*
I’ll only eat spinach in a salad. I love it raw/uncooked!
I’ve never been to college but I’ve been to a trade school. (Travel Academy)
Daisies are my favorite flowers. There’s something about them with their simple, innocent look.
I love my wheelchair and it’s driver (aka: my husband)
I believe in training a dog with the reward system versus punishment system.
To motivate myself in getting things done that I really DON’T want to do is by rewards (no I’m not a dog! *wink*). Those rewards can be ice cream, ice cream, and maybe some more ice cream.. but if I’m out of the ice cream (watch out!) then I’ll take whatever it takes to make me smile and moving with a pep in my step.
Now finally, here’s the part you are waiting for… Ready? My health update… YAY!!!: I did some lab work last week because my Endocrinologist asked me to. Instead of my TSH (thyroid stimulating hormone) being too low, it’s flipped out and gone the other way. Needless to say, since I switched back to Tracleer (bosentan) from Opsumit (macitentan) and started taking Methimazole, it has worked especially well. Unfortunately, it worked too well and I have had to cut back on the Methimazole two weeks ago. I’m thinking that I’ll be off the medicine all together after my next Endocrine appointment at the end of this month. The weird thing is… I asked my Pulmonary Hypertension doctor if they have heard of any other PH patients on Opsumit having the same TSH problems. She said no. That’s why they keep telling me that they think it’s my Cordarone (Amiodarone). Though, Amiodarone, is not a good medicine to be on, it’s the one medicine that I could tolerate when my heart started it’s arrhythmia problems back in 1993. I’ll be going to see my Cardiologist for an Echo and to discuss this more and maybe see what else is out there that can replace Amiodarone. I mean it’s been 20 years. Surely, something better and MUCH more expensive is available by now. Though, Tikosyn was recommended to me as my first option last April but I’m not too thrilled with it. I don’t have A-fib and I’m not ready to subject myself to a new medicine that I’m not at least 75% sure that it’s something that will do more good than harm. I’m just not one of those patients that blindly go where doctors lead me. I read up on everything they suggest.
Stay in touch because I love to hear from you. You can find me on Facebook, Instagram or email: email@example.com *HUGS* to you all!
For those of you who do not use Facebook, you probably do not know that I just completed and uploaded a video. I’ve been receiving a lot of searches concerning the use of a Bipap machine. I’d like to do a series of videos to answer the questions that I can about the Bipap. If you’ve seen any of my videos, you know it’s hard for me to remember everything I want to say. So with that in mind, have fun watching my video which is almost 8 minutes long. I know! Nearly eight WHOLE minutes of fun-filled excitement! What are you waiting for??? *wink*
Want to know more? Let me know in a comment.
 ** I’ve noticed that my blog doesn’t show the YEAR of each post. That’s why I’m placing the year now at the bottom of the posts. You know… in case you were wondering. haha! I hope you are having sunshine where you are! *love and hugs* to you all. Be well!
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: firstname.lastname@example.org or Facebook, Instagram, and Twitter (not so much on Twitter!).
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! email@example.com
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.
Finding something to do with your fireplace when you feel uncomfortable about using it because you use oxygen is tricky but K managed to do just that. First, we had to …ok ok.. HE had to clean it out. The cobwebs were something I wasn’t going to get close to. (and he’s even afraid of spiders!) He’s so brave! At first, for a Christmas present to each other, we were going to get an electrical fireplace insert. However, we could never decide which one to buy and frankly, we just didn’t know what we were doing. So, K had an awesome idea. I mean totally awesome. Well, it’s awesome to me.
First, came the cleaning out part… like I said just a few seconds ago. Then we shopped on Amazon.com (who doesn’t love that website??) and found the perfect thing to put INSIDE the fireplace!
I had to get creative because when we got the candelabra, we didn’t realize it was intended for real candles. So it had a spike where the candles go. I brainstormed about how to be able to use faux candles (which we bought at Big Lots) inside the glass votive candle holders. I came up with 5mm thick craft foam that I cut into circles the diameter of each candle base. It was just thick enough that when I pressed them to each of the candle holders, the metal spike wouldn’t poke the bottom of the glass votive holders. I know.. I’m good! haha! After that, we chose batter-powered realistic candles that have a 5-hour on timer function. K had the greatest idea after that. We noticed it was missing something. He went to a glass store and took the inside wall measurements and had them cut 3 mirrors and now instead of seeing the back of the fireplace, we see the reflexion of the glowing candles.
Since that project is finally done, I moved onto my next one. The fairy garden. I’ve been learning a lot about Polymer Clay through Pinterest (I love that website too!?!). Polymer Clay is what I made my Happy Jar from. I considered that practice for the fairy door that I finished making the other day. Now, I’m going to use a Ball jar to build the fairy house and attach the door to it.
It’s time consuming but it gives me something to do and look forward to when I have days where I don’t feel so great. Remember that raised flower bed I got for Christmas from Santa? Rocco had his picture taken in it. Well, I’m going to plant spinach and some herbs and whatever else I can fit in there. There also will be my fairy garden right there off to the side of the herbs…or whatever is growing!
In between making the bits and pieces of my fairy door and garden, I’ve started yet another project. I don’t normally have so many things going at once. It can be a little confusing and I like to finish one project and then move on to the next. It keeps the excitement going and I have something to look forward to in the future. It gets me out of bed every day. This project, though, I was asked to do. I’m making a family Christmas photo book. I use Shutterfly for all my photo books. I can only work on the book a page or two at a time. It’s very stressful to me to concentrate so hard. (hmm.. that didn’t sound right! *wink*) I want it to be perfect. Here’s the cover of the book. That’s all I’m going to reveal. Everything else is top secret. I want the rest to be a surprise for K’s mom and family. Cleaning up 110 pictures after weeding them out of almost 300 pictures was VERY tedious. That part is NOT fun unless it’s a smaller amount of photos.
I really feel that it’s important to stay active and engaged in life. Find a hobby that you’re interested in. Try a new one. You don’t have to be super creative or artistic. Just do something that makes you really happy. Instead of writing emails, get some cute notecards and hand write to someone. It’s always fun to get a surprise in the mail from someone you know. Heck, get blank notecards and draw a picture on it with crayons for that matter. Oooh that sounds fun. I may have to try that. I’m not good at drawing but I bet my family and friends wouldn’t care! Right? *wink*
Just find some hobby that gets you out of bed every day. Stay well. *hugs*
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.
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