I finally watched the movie…

Living on Oxygen for Life

I learned, once again, two weekends ago that life is short. Even though someone may live to be 84 years old, when they pass away, time spent with them is never long enough. A celebration of life is what I experienced that weekend with all the love and memories shared between family and friends. It was sad but glorious to feel life of one person touch so many even after his passing. There is no doubt in my mind that his memory will live on forever.

My whole life I’ve wanted to do something or be someone who will be remembered forever. I wanted to be profound enough to be remembered by those who know me long after I’m gone, not just a blip on the radar and then gone. I think there is a little bit of this in all of us. Though it may sound pretty corny, but I didn’t realize until I watched the movie “The Fault in Our Stars,” that the one person who will remember me always, who will carry the memory of me and the one who knows me the most is K, my husband. I may have had a big battle of a story called life before I met him, but our lives together is the epic story we will carry of each other forever. The one that matters.

So, I finally watched the movie and I cried like crazy too. I tried not to be over critical about the girl portraying the Hazel Grace character who needed oxygen. She did a good job. However, from my experienced view, there were some things that could have been done differently to show the truer side of using oxygen. I know, it’s a movie for entertainment purposes but this is the one time and the one story that a lot of eyes were watching. I was wishing, at the beginning or end (or both!) of the movie, the director could have put that “Breathing through a straw for a whole minute” tutorial to show the audience what it’s like to experience shortness of breath.

I’m trying to figure out whether the movie The Fault of Our Stars was focused on A. The relationship between Hazel Grace and Augustus, B. The illnesses, or C. The thoughts people have when they realize their days are numbered. I think this would be a good book for kids to read and discuss in high school. It could teach them so much.

Be well everyone!!

Oh my gosh! I love it!

Living On Oxygen for Life

I just had to share this with you because I love it so much. Kayla, from PHantastic Jewelry has made me a Pulmonary Hypertension Awareness bracelet. It arrived in the mail today. I immediately showed K because I was so excited. This bracelet that I ordered exceeded my expectation! Please check out her website. According to Kayla, the proceeds from the bracelets will go to the Pulmonary Hypertension Association.

Below is the picture of my new bracelet! I love it so much! I don’t think I can say that enough! Thank you Kayla!

My New Pulmonary Hypertension Awareness Bracelet designed by Kayla

My New Pulmonary Hypertension Awareness Bracelet designed by Kayla

Hope

Living On Oxygen for Life

Well, I took a nap and ended up sleeping until 10:30pm. I was very tired…obviously. The humidity here in my area of Texas has been hovering around 70% and it’s kicking my rear end. I can’t be outside for very long before my energy is sapped and I have to head back inside. But, I like sitting outside with K on a patio chair in the evening to talk with him while our pup sits at K’s feet. Yeah, that’s right. His feet. Darn that Rocco! My dog has turned traitor. haha!

One of the things I want to mention to you is that I started a section on my blog, the HOPE section, for those of us who have breathing problems and have a creative talent to design products to sell to further the awareness of their diagnosis. I hope you remember Ruthie from Josephine’s Jewelry. I had a giveaway of her HOPE necklace that she creates. She is on my Hope Page. I also want to give a shout out to another PH’er who creates bracelets to sell. She does this to raise awareness for Pulmonary Hypertension as well. I can’t wait to receive my bracelet that I just ordered Kayla! Her webstore is called Phantastic Jewelry.

When I know a person is truly trying to spread the word about needing awareness of their diagnosis, I try to help and this is what I can do. Posting a link to their blog or webstore is all part of staying connected and building a community of lung and heart patients. So, click on the HOPE tab at the top of the page and check out these two websites. Let’s stay connected! If you have a hobby that you want to use to further awareness of your diagnosis, email me at goredrider@gmail.com

In other news, my mother-in-law is coming over tomorrow…or should I say today? Since I slept so long during my nap, I’m not going to be waking up early. That’s for sure. So, tomorrow may be rough. =oP I had only one day notice. K conveniently forgot to tell me that his mom was coming over to help him with a project. I was scrambling as best as I could to “tidy up” for her arrival. Can you ever tidy up enough for a mother-in-law? haha! We shall see! We actually get along really well now. Though, in the beginning it was a little rough. She was afraid for K with my health concerns. (Which is totally understandable!) K’s mom didn’t approve of us dating and certainly wasn’t too keen on us getting married but after a few years.. well, ok maybe a few more than a “few” years, she mellowed. We’ve really grown close and she now asks about my health and doctor appointments and how they went. It makes me feel very much part of the family now. Since all of my family is in another state, I know I have K’s family if I need them quickly.

Don’t forget that June 30th is the last day for the Need a Hug giveaway. I will draw the winner on July 1st!

Why can’t people understand?

Living On Oxygen for Life

You try hard to lead a normal life. Whether or not you need that supplemental oxygen is beside the point. You still have trouble breathing. Still have trouble going throughout your day getting things done at a pace that is slower now than what you were able to do before. There are always going to be those people who will never completely understand that you are NOT lazy. They may never try to fully understand that you just have problems breathing or have heart problems.

Years ago it made me frustrated. It made me want to say, “If you could walk a day in my shoes.” If they did that, I think they’d understand really quickly. I’ve said this to my husband. I’ve also said, “Just try for one day to wear a canula and carry that portable around in public. Or use a spare 50ft tubing and wear that with the other end attached to a doorknob for one whole day.” I just wanted him to try this… to try anything so that he could understand what I go through from my point of view.

It’s not easy being attached to a 50ft tube and also run the vacuum cleaner.. never mind the fact that I get short of breath while doing it. I’m constantly aware of where the tubing and the power cord is in regards to the vacuum so that I don’t run over either one. It’s tiring. No, it’s exhausting work to just vacuum one room let alone the whole house.

I’m not writing this to complain. I’m writing this post to let you know that people will never fully understand what we go through unless they go through it too. I didn’t say they wouldn’t be compassionate about it though.

It took my husband a while to let it sink in that I had to slow down and even stop working. It took an emergency admission to the hospital before I saw a chink in his denial armor. He didn’t want to see my health getting worse. He wanted the girl with whom he fell in love. That girl is still in me. She just moves a little slower.

I’m married to a great guy who pushes me to do more and over the years he’s learned what my limits are where my health and energy is concerned. He walks slower when I need to slow down. He finds a place for me to sit down to rest when in the mall. He always carries my portable oxygen when we are together. By doing these simple things for me, he knows that my energy will last longer and we’ll have more fun. Also, by doing these things, it tells me that he understands the struggle of what I’m going through and that he cares to make it easier for me.

I’d like give a shout out to a very courageous young lady who I know. She has Cystic Fibrosis. A little over a year ago she was very close to dying. She underwent a double lung transplant and is now enjoying life again. She’s decided to start writing a blog about her experience. Please check out her wonderful blog. You can find it at: Living the Unexpected Life.

Check out the Need a Hug Page on my blog (look above) to see how you can enter my next giveaway!!! The picture of the afghan to be given away has been posted on the Need a Hug page. Enter now! Deadline for this giveaway is June 30th, 2014 at midnight CST.

Don’t forget to follow me by blog, Facebook or Instagram. Links to these are at the right side of this blog. Thanks y’all! Lots of love to you!

This is who I am

Living On Oxygen for Life

I was asked to contribute a little something for another blogger. She’s building a blog community for people who have PH or have just been diagnosed with Pulmonary Hypertension. This is what I wrote: (It turned out a little long!) find her blog at PHight or Flight

My life is a little bit different from someone who was just diagnosed with PH. It’s different in the way that I was born already having PH because I have congenital birth defects such as: ASD & VSD, Scoliosis, & Restrictive Lung Disease to name a few. So, I was pretty much told from day one that I’ll never be able to do this or I shouldn’t do that. Basically my time clock started on day one and after spending my first month of living at a hospital, my mother was told to come get me and take me home because there wasn’t anything left the doctors could do for me. That was in 1969. I will be turning 45 in September. Yippee!!!!

You’re probably wondering how I do it. How do I beat the odds? Never, ever give up. No matter how much life sucks or how dismal the outlook seems, you keep marching forward. I am a very realistic person who doesn’t want explanations from doctors sugar-coated. I want facts. Facts are something you can work with… Not the “what if” scenarios that can keep you in fear of a future event that may or may not even happen.

In 2006, I started going to a Pulmonologist who specializes in Pulmonary Hypertension. I went through the whole process of getting correctly diagnosed with PH for insurance purposes because my breathing was getting worse. At this time, I was already using oxygen 24/7 and taking cardiac medication for Ventricular arrhythmias. Although, I was still going out dancing at a dance club… Just no longer drinking any alcoholic beverages which I only did socially anyway years ago. Besides, I don’t need alcohol to have fun! *wink*

Since 2006, I’ve had a slow decline in health (so, no more dancing…boo!). I’m getting shortness of breath a lot more and I’ve had to increase my oxygen flow now. Instead of using 5 liters per minute 24/7, it’s now at 6 LPM. Each step of a decline in health hits me hard emotionally. There’s really no way to prevent the emotion side of things but if you can accept the fact that the human body wasn’t created to live forever in pristine condition, then it becomes easier to move past the emotional part. Once you are past the emotional part of accepting how you are physically today, you can actually learn new ways of getting things done in your daily life. There are going to be things you’ll find that you can no longer do on your own or at all. It will make you mad. It makes ME mad that I have trouble doing things that I once was able to do easier than before. It will help if you have family and friends who are willing to understand your condition and are able to pitch in to help without making you feel as if you’re an invalid which is so important! There is a fine line that helpers need to figure out with the person who has PH where the helper helps up to a certain point. I really believe if a helper does everything for the person with PH, the patient could end up giving up on life’s little joys. Then, depression sets in…which is a huge problem when living with PH. If you notice that you are getting depressed, talk to your doctor. Get help.. Don’t ignore it.

My advice for people living with PH or just diagnosed with PH is give yourself a break. You did not cause this to happen to yourself. It’s not your fault. It is very ok to allow yourself a “ME” day every now and then to give your body and mind a whole day to just rest. Find something that you absolutely love to do and have fun with it. For me, that would be reading, container gardening, or crocheting. Or just flip through a good cookbook to find a new recipe to experiment with. You need things that make you smile on days where you feel bad because, yes, you will have those days. Just don’t let yourself get lazy. Try to stay as active as you can but remember there will be days where you feel like you just can’t do it. Give yourself a break. It’s ok.

However you chose to battle PH, do not let it do more harm than good. Take your medicine as prescribed. If the medicine isn’t making you feel better or is giving you a bad side effect, contact your doctor to see if you can try a different medicine. Don’t just stop taking it and not tell your doctor. That’s dangerous. Also, if you are suppose to use supplemental oxygen, then use it like you’re suppose to. By not, using your oxygen properly, you are only harming your heart by making it work much harder than it needs to to pump more blood out to your body. You will end up starving your heart, brain and other muscles from that much needed oxygen that you refuse to use. So, give your heart and lungs a break and add possibly years to your life by using your oxygen and taking care of your body. Stay away from sick people. I do whatever I have to do to avoid getting sick. I get the flu shot every year. I haven’t had the flu in over 10 years. I also wash my hands a lot with just soap and water. You can use antibacterial soap but regular soap works just as well.. In my opinion! During flu season, my best friend are Lysol wipes….especially if my husband is sick. I tackle doorknob, tv remotes and light switches multiple times daily. Like I said, I do whatever I can to stay healthy.

As for getting use to wearing your oxygen in public, it can be a little scary at first. I write a blog all about Living On O2 for Life. People are going to stare because they are curious. Little kids will ask about my oxygen a lot to their parents first and then to me. I ALWAYS take time to talk to people who stop and ask me. There’s usually a family member or a friend who they know who uses oxygen or about to start using oxygen. If I can help them make life just a little bit easier for them, it’s worth a few minutes of talking with them. Don’t you think? I didn’t have anyone to ask back when I started using oxygen when I was 17 years old and still in high school. Of course, there was no internet either!

Life is worth living. So get out there and live it the way you can not by what you can no longer do.

Christine

For the disabled…

Living On Oxygen for Life

handicap

I was out at a doctor’s office and K parked the van in a handicap parking space because I have difficulty walking from the parking lot to the building. It’s a longer than average walk to the doctor’s office compared to walking from a restaurant parking lot… just to give you a comparison. K takes out the wheelchair from the back of the van and puts the legs on and then pushes it to my side of the van for me to hop in my four-wheelin’ ride! Woohoo! Look at me go! Now I don’t always use the wheelchair but I do always use my oxygen. So, when you see me pulling into a handicap parking space and I slap up my handicap placard on my rearview mirror, you would see that I’m obviously disabled in someway. Right? I mean, it’s pretty darn obvious now-a-days with the oxygen canula and all.

However, my “disability” hasn’t always been so obvious. Even though I still had all those internal medical conditions, it wasn’t until just before I quit working that I applied for a handicap placard for my vehicle. I wasn’t using oxygen 24/7 at the time and when I used the placard that I had EVERY right to use, I felt weird about it because I didn’t LOOK obviously handicap. But, do I quit using it and subject my heart to the extra stress from the exertion of walking from a further parking spot? You know me… I’m a rebel! I didn’t care what others could possibly think of me. I did what was right for ME.

Getting a handicap placard isn’t as easy as getting a can of soda from a vending machine. Though, sometimes even that can be a pain in the butt! *bang* *bang* *bang* Give me my soda!!!. It’s not like you walk up to the counter and say, I want a handicap placard. You have to have a doctor approve of it first by filling out paperwork. Yuck! Paperwork! There are temporary placards and permanent placards. Temporary are for those who have temporary ailments that will last a short time.. like a broken leg or toe. A permenant placard is for people who have permanent disabilities on a long term status. Even permanent disabled placards need to be renewed every 5 years.

Before I was able to post this entry on my blog, one of my readers, Nicole, had written an EXCELLENT letter to her newspaper that they published. The letter is titled: Not all disabilities are visible. I think this letter speak of all people who do not have a visible disability but still need a handicap placard. I highly recommend everyone to read it. Nicole… YOU GO GIRL!!! Lots of love to you!

Don’t be afraid to use your handicap placard. You have it for a reason. Use it to help your body.

I will be having another “Need a Hug” afghan giveaway in May. If you would like to enter that drawing, please click on the above “NEED A HUG” menu link to read what you need to include in your email to me. You can email me anytime at goredrider@gmail.com to enter before the giveaway has started. Take a minute to sign up to follow my blog so you won’t miss a thing! Life is good and Summer is finally showing itself here. It’s getting pretty hot! I planted my tomato plant and a jalepeno plant just yesterday. My raspberry bush has tiny raspberries already!!! I’m SOOO excited! I hope they don’t die. I’m a first-timer gardener. Be well everyone!

When the world is crashing down…

Living On Oxygen for Life

We all have the kind of days when you feel like the world is crashing down around you. You look for something… anything to pick you up and keep you moving. Many times, for me, it will be a particular song and when it’s playing either on my computer (so that I can have it readily available at times when I feel low) or I hear it on the radio in the car. I also have this particular song on my iPhone. I’ll just pop on my ear bud… I say earbud, singular, because I can only hear in my left ear. I know… it’s totally inconvenient to have one hearing ear, especially when I’m sitting in the movie theater or anywhere, really, and the person I want to talk with is sitting on the wrong side of me. hehe!

Anyway… as I was saying… The link below leads you to a song that gives me a lift when I feel like I’m no longer Wonder Woman, which isn’t often, mind you. hehe! *wink* So, listen to it and pick yourself up, dust yourself off and move on if you’re having a bad day. Stand up and dance along with the beat of this song and I swear (well, not really… I try not to swear!) that you will feel better for listening and dancing along.

http://www.youtube.com/watch?v=75ME7xqdmvE

This song gives me power to be me… to walk on in life with my head held high.

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