A fun adventure to get me outside.

Living On Oxygen for Life

Sometimes it’s hard to get motivated to get my butt outside, especially when it’s either cold or hot outside. K likes for me to stay as active as possible while on my days of feeling good. He also likes for me to push myself a little bit (just a little bit mind you!) even when I don’t feel 100 percent. Ok, well, that’s virtually everyday but let’s not be technical about it, right?

So, what gets me excited enough to get out in my yard? Gardening! Not just any kind of gardening, you know… With flowers and what nots.. I’m talking about growing food! Now my yard isn’t big. K says it’s about the size of a postage stamp but I make it work for me. That’s right… I use raised garden beds and half whiskey barrels because, having Pulmonary Hypertension, bending down is difficult for me. This year, I’m growing potatoes (red & white), spinach, carrots, cilantro, thyme, chiles, Bibb lettuce, garlic and a few onions.

This year (2016) K built this raised bed for me to have more garden space.

This year (2016) K built this raised bed for me to have more garden space.

Last week we had 2 major hail storms that damaged our house and K’s car. I feel a little bad because my van was in the garage. hehe! Here’s a picture I took of the second storm. It was so loud!

This hail did some damage to our house and to K's car.

This hail did some damage to our house and to K’s car.

Thankfully, and quite unbelievably, my gardens survived both beatings! Maybe it’s because of the netting I have over them. I use it to keep out the bugs. I’m looking more and more like a farmer everyday! Even my dwarf orange, lemon, & lime trees survived.

My first attempt at growing carrots!

My first attempt at growing carrots!

My first attempt at growing Bibb lettuce.

My first attempt at growing Bibb lettuce.

Because I use a Bipap, I tend to have a problem with too much air in my tummy sometimes. When I eat iceburg lettuce or onions, it only makes the problem worse. I like salad but most salads have iceberg lettuce in them. I can eat spinach with no problem though. I thought I would try growing the Bibb lettuce as a way to eat a Spinach & Bibb lettuce salad instead.

I like to work around any problems that come up. I call it MacGyvering! Don’t forget to follow my blog to stay up to date with all of my adventurous moments. Happy Easter Sunday everyone!

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!

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