2017 A Year’s Review…

Living On O2 for Life

Life during 2017 sure has been interesting. K and I have found ourselves confronted with many challenges that mostly were unexpected, which usually is the case for us. However, there were a LOT of good, fun, adventurous times throughout the year for us too. Thank goodness… because we really needed them.

January 2017 started with a visit from BOTH of my sisters at the same time! It was shockingly fabulous because it’s difficult for the both of them to have the same time off with their work schedule and then they’d have to drive down to see me now. I don’t travel well anymore and they are starting to understand that a little better now. It’s one thing for them to know their sister’s health is declining but it’s another thing to actually see it first hand. January brought the gift that I’d been waiting for… Christmas cookies made by my older sister and frosted by me and my sister and decorated (little kid style) by my very adorable niece.

February 2017 brought all kinds of exciting fun planning of my vegetable garden. We tried growing new things this year, like broccoli, squash, and tomatoes. I tried to keep up with the garden but with my health and the Texas heat, it started to get me way too tired just trying to keep it watered. A couple of times, K would tell me to just go inside because he would see me struggling with my breathing. So, he took over the garden for me. He’s my hero!

If you haven’t ever grown your own vegetables, it’s a sight to see and it’s actually very therapeutic. No, really… I swear! In March, the potatoes and our two tomato plants were growing like crazy due to amount of rain we’d keep having! Yay!!

In March, K and I were shopping in Home Depot and my liquid oxygen tank flew out of the cart and landed on the cement. What a scene that was! K was so worried about me but I handled it amazingly well after I realized it still put out oxygen. Whew, right? By the end of March, I was harvesting my first strawberries! Yummy! In fact, K was so interested in my strawberries that he filled two hanging baskets with strawberry plants to grow some of his own. Wow. I’m slowly turning him into a farmer! haha!

In April, K’s Aunts and Uncles came down to visit but stayed with his mom and his aunt here in town. By May, I had a lot of tomatoes I didn’t know what to do with them. I mean, we could only eat so many slices of tomatoes on sandwiches and for salads. So, I looked up on Pinterest how to make homemade tomato sauce. The process was tedious and it felt like it took forever but it sure was a success. I even had to call my mom for advice.

I didn’t get to go to my niece’s recital or birthday party because I can’t drive myself that far alone anymore. It just wears me out being the driver for that long. In between the missed trip to my sister, to the time I got to go see them later in the year, K and I went to 2 concerts. We saw U2 and then we saw Roger Waters (think Pink Floyd). Those concerts were a gift from me to K for his birthday and Christmas of last year. We used my wheelchair and I a bought a cup holder that I could attach to the arm of my wheelchair from Amazon. It was SO handy.. so convenient and affordable! Yay.. we all love affordable, right? Going to the concerts with K reminded me of the old days of dating K. We had a good time dancing, singing and acting goofy back then as we did for these two concerts.

In August, my older sister road the train to my city and drove me in my van to her house. I stayed with her for 10 days and then she drove me home and caught the train home. How sweet was that??? I know, right? I have to admit that I missed K something fierce. After I got home and rested up, K and I went on an adventure to South Padre Island for our 25th anniversary. We hit every art gallery and tried various restaurants and did all kinds of fun things. It was a great 10 days but on the way home, the front grill of my van flew off and went over the top of the van. I’m just thankful that it wasn’t me driving because it sure was scary. We didn’t see where it landed and thankfully no one was behind us. I knew we should have taken Klondike, my rubber chicken (road trip mascot). We got an estimate to replace the grill but it was an outrageous price. K and I had an idea but we didn’t realize that we were both thinking the same thing until we started talking about Plan B. We’d the grill replacement part on Amazon, order it, and K thought he could put it on the van himself. So that’s what we did for so much less! I’m so impressed with K’s skills! Though, he’s not much of a car guy but he can fix simple things. My MacGyver, he was! *wink*

From October up to now has been rough, K has had a lot of trouble with his eyes that scared the ever-lovin’ bejeebers out of us. He’s had to have 2 surgeries and I needed to take care of him while he recovered. It reminded me of just how much he actually does for me with my health needs and all done willingly and without complaint. I’m so lucky. I have to mention that he’s got some great ophthalmologists. One of them has the most awesome waiting room filled with jigsaw puzzles that anyone can work on and even a blanket rack that has CROCHETED afghans! *shock* Wow! K said his doctor wanted to meet me. Apparently, K had been telling him about me and the doctor has a daughter with scoliosis like me. So, without giving names, I’d like to give a shoutout to her! “HEY! If you are reading this, here’s a big hello to you and hoping that you are doing well.” *hugs*

Christmas was great! I got to help K decorate the house with new creative ideas this year. We try to add new ideas every year to the decorations! This year we added 5 wreaths we decorated together, 3 hung in our family room windows and one for two large mirrors we have. I had to go at a really slow pace hanging Christmas bulbs, wrapping ribbon around trees, and creating my 3 wreath masterpieces but we got it all done in about 5 days. Hooray! And now it’s January 2018. We’re ready for a better year. *fingers crossed* We’re already planning some exciting things to look forward to which is how we stay optimistic during the tough times.

You can see the pictures I take if you look in the right column of this blog under the Instagram heading. You don’t need to have an account to see my pictures. I just didn’t add them to this post because it’s already so long.

I’m famous!!! *wink*

Living On Oxygen for Life

Yay! I have a podcast thanks to the interview I did while at the Pulmonary Hypertension International Conference in June of 2016 and to Steve Van Wormer’s awesome PHAware Global Podcasts. He helps bring awareness to Pulmonary Hypertension. He gives those of us who have the various forms of PH an opportunity to share our stories of what it’s like to go through the process of becoming diagnosed and then living with this incurable disease.

I was pretty nervous about being interviewed. I hope you will check out this website that includes my podcast and many others’. You can listen to me here (so cool!!):

My podcast by PHAware.global to help spread awareness of Pulmonary Hypertension.

Please support this effort by going to this website: “Donate now to support pulmonary hypertension research. Engage for a cure with phaware.” You could even get an “I’m Aware That I’m Rare” t-shirt to spread awareness when you donate. I highly encourage you to check it out.

After you listen to my podcast, come back to my blog and click on the tab above, “Pulmonary Hypertension,” and scroll down to the section that says “My PH Story.” This is something that I wrote that includes everything I wanted to say additionally to what I said in the podcast.

Love y’all! *hugs*

My PH Story

Living On Oxygen for Life

While at the 2016 Pulmonary Hypertension International Conference in Dallas, TX on June 17 – 19, I met Steve Van Wormer, who helped create the PHAware Global Association. At the conference, he did interviews of PH patients to help get their PH Stories out to the public to raise awareness of this devastating and currently incurable disease. He asked me to do an interview. I tried my best to do the interview. He was SO gracious when my brain decided to blank out.. I explained that I write much better than I talk. The long term effect of high CO2 on my brain really has affected my memory and recall. Thank goodness for editing… and cut & paste. Hopefully, he can make something out of what I said.

For this reason, I want to get what I REALLY wanted to say here on my blog. Here we go!

**********

I'm aware that I'm rare. Rocco has now become PHAware. He's my PH Pup!

I’m aware that I’m rare.
Rocco has now become PHAware. He’s my PH Pup!

My name is Christine Liles and I have Secondary Pulmonary Hypertension. I was born with PH due to Congenital Heart Defects and Scoliosis that caused Restrictive Lung Disease. The doctors knew almost right away that I had Pulmonary Hypertension. The pressures were really high and since I was born in 1969, there were no PH medications or a course of treatment for this very rare disease. So, I grew up living with this disease taking Lanoxin for a short time to help slow my heart rate down. I was restricted from most gym activity because of the shortness of breath.

My parents & sisters were great at providing me with as close to a normal life as possible. Before the age of 10 years old, if my sisters bowled and played baseball in leagues, I was right there with them. Granted, I was much slower but I did it even though the doctors kind of frowned upon it. At the age of 10, my parents finally talked my Cardiologist into performing a corrective surgery on my Ventrical Septal Defect in my heart. My Thoracic & Cardiac doctors, both, didn’t want to do it because they didn’t think I had a chance to make it off the table. It was my most glorious moment walking out of the hospital 7 days later with a patched VSD. With that successful surgery, my PH pressures reduced slightly.

Life really improved until I turned 17 years old. I started having blackouts while driving, began becoming forgetful, and my CO2 was much higher. So I started using oxygen at night. As time went by in my life, I started having more Shortness of Breath. My oxygen flow increased, I started using a bipap to sleep with and I had to stop working all together. This happened when I was 23, just a year after I got married to the love of my life. It was a very difficult adjustment. He knew it was coming.. this health change. I told him when we were dating and then before we married. This is the best I will be. I won’t get better because there are no medications to fix my PH and only one pill that can regulate my heart arrhythmia that I now have. I asked him… Can you handle this? His answer was total honesty which is what I wanted to hear but was hard to hear because he said.. I don’t know. And then, I went on oxygen 24/7. My husband has been my rock and he’s made from the finest quality of human beings… his parents.

In 2006, my Cardiologist asked me to check out the medicine Revatio & Cialis with my pulmonologist. So off I went to see my Pulmonologist who then sent me to see a PH Specialist. I didn’t even know there were PH Specialists. Over the years, after trying most of the PH medications that are available, which there aren’t nearly enough, there is only one medication that my body can tolerate. This is what I will stay on until something new comes along that my doctor thinks might work. I’m not a candidate for lung transplant because of my deformed ribs. I spend my life finding different ways to do the things I need to get done. Picking things off the floor are by using my toes to lift it to my hands. Vacuuming is my husband’s job now. I bend at the waist to wash my hair. I have an adapter for my van to use my bipap on the road for vacations while in the car if have trouble breathing. I do things in short bursts of energy. What takes my husband 2 hours to clean the whole house, takes me all week and even then I can’t get all of the really hard things done.. such as scrubbing the tub, vacuuming or mopping the floors.

This is my life now and I’ve learned to adapt which is the key to keeping myself happy. I’ve found hobbies that I can do that brings me GREAT joy. Just to be able to garden, my husband has built me a raised garden at the height of 16 inches to help me not have to bend down to the ground to grow vegetables. Instead of growing my dwarf fruit trees in the ground, he planted them in half whiskey barrels. I had trouble with dragging a long rubber watering hose, so I asked for a Pocket Hose because it is SOOOO light!

Will there be a cure in my lifetime? I don’t really know. In all honesty, I’m not so concerned for a cure for ME. I’ve had a GREAT life, filled with love and so many adventures. What I am concerned about are all the children who have Primary Pulmonary Hypertension. They need a cure in their lifetime. They have their whole life in front of them but with PH and without a cure, all they have are the medications that are currently available. My passion is for these kids. I know what it’s like to grow up with health problems. PH is no easy disease to live with. Help us. Be PHAware and get the message out that we need a cure. WE ARE DESPERATE TO BREATHE. Check out PHAware.global to see how you can become involved in finding a cure and spreading the word about Pulmonary Hypertension. Or follow on social media @phaware

#PHAware

2016 PH International Conference in Dallas, TX

Living On Oxygen for Life

I’ve been waiting for this conference to come for the past several years. It was held several years ago in Canada and ever since then, I’ve been really, REALLY wanting to good.

So imagine my surprise when I heard nearly a year ago that the next conference will be held practically in my own backyard!!! Ok not really that close. It will be in Dallas, TX and that, my friends, is drivable since I go there anyway for my Pulmonary Hypertension doctor appointments. In fact, my doctor will be there. I already told her that I’ll try not to embarrass her by screeching and flagging her down saying, “*GASP!* There’s my doctor!!!*”

Seriously though, this conference is hugely important because it’s where PH patients (like me), Caretakers (like K), PH physicians and some sponsors all come together to offer the latest information about Pulmonary Hypertension. There will be support groups for parents of children with PH as well as for adults with PH and even for the caretakers.

I’m super excited to be spending the weekend there. I’ll have my puppy with me in my room. I think it will be a wonderful experience to be surrounded by so many wonderful people and learning how they have adapted their lives to overcome the challenges of having Pulmonary Hypertension.

I’m really interested in finding the people who were born with scoliosis and have PH as well. That’s similar to my health condition. I was born with Pulmonary Hypertension. So that makes me a long-term survivor of secondary PH and hopefully I can offer information to anyone who asks me.

I will be blogging my experience while at the conference. Hopefully I will have lots of pictures to post & show you. I’m still thinking of whether or not to take Klondike, my rubber chicken. He’s going to need a new hat. My sister kept Klondike’s beach hat. Probably for the llama she has. haha!

Learn more about Pulmonary Hypertension at:PH Association Organization

Be sure you FOLLOW my BLOG to read all about my fun adventures and living on O2 for life!

A good read… trust me..

Living On Oxygen for Life

You know I love writing on my blog about living on oxygen and all that it entails but when an opportunity comes along where I share more of what I know to the world, of course I’d jump at it. I was approached by another blogger, Johan, who writes an incredibly wonderful blog. It’s not about his life. He took blogging to a whole other level. Have you ever been curious about things? Johan interviews people who have incredible stories to tell about all sorts of subjects. Sad stories, adventure, war, inspirational people, space travel… just a lot of interesting interview articles.

When I first visited Read an Interview and started reading the interviews, I thought…these are good! They are something that easily could be in a magazine. So, Johan, emailed me a list of questions pertaining to living with Pulmonary Hypertension and the equipment that I use to survive this incurable disease. I dug deep with this one. It’s the first time I’ve ever done an interview and I hope you like it. If you would like to read it, you can find it here: Living with Pulmonary Hypertension.

I did it!!

Living On Oxygen for Life

I really miss Photoshop. Seriously, I do. I really love taking pictures and also creating neat-looking graphics. So, I fell in love with Photoshop when I had a PC computer. Now that I have a MAC, I don’t have Photoshop. I looked for an app to create something to bring awareness to this month’s Pulmonary Hypertension Awareness campaign. You know, something subtle but eye-catching. Naturally, my picture was in my creation. hehe! Look to your left. Stunning, isn’t it? Ok, don’t laugh. I could only find a very basic app to put text on my photo. So sad. But! It gets the message out there and that is what’s most important. For those who need more information on Pulmonary Hypertension please go to: Pulmonary Hypertension Association.

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

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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Spread the Awareness!

Living On Oxygen for Life

Pulmonary Hypertension is not something that you can easily live with. In fact, it’s often misdiagnosed as some other problem such as asthma. You need a right-heart catherization to properly diagnose Pulmonary Hypertension. If you are a healthy person, you are probably not aware of how difficult it is for those who have PH to breathe. Try this:

  • 1. Unwrap a drinking straw.
  • 2. Hold your nose.
  • 3. Breathe through the straw for one minute.
  • Still with me? Pulmonary hypertension is an under-diagnosed lung disease that can make breathing this difficult 1,440 minutes a day. Learn more: http://www.PHAssociation.org

    It’s imperative that we spread the word about this silent, rare disease that has no cure as of yet. But there is hope and that hope lies with YOU.

    This post is to give a shout out to a wonderful young lady, Haley, who has Pulmonary Hypertension. She writes a blog with the purpose of spreading awareness of pulmonary hypertension. Please go to her page at: PHenomenalhaley. We both have Pulmonary Hypertension but her’s is Primary where as mine is Secondary (caused by other birth defects).

    So, visit her page to see all the things she posts about. Spread the word about Pulmonary Hypertension so that we can find a cure!