Hello, my name is Christine. I use oxygen 24/7 and I’m 44 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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This morning I had a doctor appointment with my cardiologist who I’ve had for the past 20 years (at least!). He’s a GREAT doctor and I truly trust him which is why I’ve stayed with him for so many years. He’s the one that finally found the medicine, Cordarone, to help my heart from skipping beats all the time. It was a very serious problem. When I say “found,” I mean we tried numerous types of cardiac anti-arrhythmic medications. Unfortunately, those medications like: beta-blockers and calcium channel blockers all create problems of SOB for me. With Cordarone, I didn’t have the problems that the other heart meds were causing me. It was a very scary moment in my past trying to get my heart back under control. I ended up being wheel-chaired straight from my cardiologist’s office through the parking lot and into the emergency room where I was directly given a room. This was all because of my non-stop irregular heartbeats. I had a week-long wonder and worry that I was going to die. My older sister (the one who came when K’s dad died) came down to help me and sit with me in the hospital. Anyway, it was pretty nerve-racking for not only me and my family but my cardiologist as well.
Today, I had my first back-to-see him visit in 5 years. Yeah, I procrastinated on setting up this appointment but my PH doctors were pretty insistent on having my cardiologist, Dr. M., keep track of my dilated ascending aorta which they call an aneurism. I have to tell you that it was a joy to walk in and not even tell them my name and they still recognize me. Sure, they knew I was coming but the others, once I got past the sacred door to the back rooms, acted as if they missed me. I was thinking… Wow! Do they treat ALL their patients so well?
First I have an EKG done which looked good. I talk to the doctor a bit and then I have my Echo done. What unnerved me a bit is that Dr. M came in to watch the Echo being performed. He was worried a little about the pressures, which use to be around 77 but thanks to Tracleer the pressure is at 51. He’s not as concerned about the dilated (4.6) aorta as the PH doctors, which is a little bit of a relief because I know and he knows that I’m really not a safe candidate for surgery. He will watch it on an annual basis though. He was concerned that I have no reason (medically) to have signs of a dilated aorta. He and I are wondering if Tracleer could be causing this. He recommended that I ask the PH doctor try me on the new Tracleer-type medicine that has just come out. It has less side effects as Tracleer. I haven’t had much luck with other PH meds but since Dr. M asked, then I would give it a try. Sorry that I don’t know what the name of it is. Dr. M. couldn’t remember its name.
I also talked to him about Cordarone. It works great for me but it has one bad side effect. It can cause fibrosis of the lungs. My PH doctors are worried. So, I asked if there was any new heart medicines that I could take for my problem. The look on his face was comical. It made me smile. He does not want to go through what we went through when I first had my heart rhythm problem. He has decided to send me to another cardiac specialist who deals with the electrical problems of the heart. Maybe that doctor will know of something. Shuffle… Shuffle… Shuffle… from one doctor to another. My life’s story. haha!
Life is still good. I’m home to rest up and then I will head out the door to meet up with K at his Mom’s house so we can all visit a plant nursery. I’m really excited. Maybe I can talk K into buying me some more ice cream. hehe! Never hurts to ask!
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Hello my friends! I’m glad you follow along this adventure with me. Today, I’m going to show you three pictures from my life. That’s right… It’s Random Picture Day! I love Random Picture Day. They’re so fun!
About a year before these pictures, K and I were making plans to go with K’s family to Cozumel. It was all pretty exciting because I loved going to Jamaica for our Honeymoon. But my health started to decline again and I knew I wouldn’t be able to go with K on this trip. I was pretty heartbroken but I didn’t want K to NOT go because I couldn’t go with him. It was a big vacation with his extended and close family going to Cozumel. So, I told him that he should go and that he shouldn’t worry about me. I mean, I have my family who I could call if I needed anything.
I helped him pack and saw him off for this grand adventure without me. I was bummed because this was going to be nearly a week without him in the country. It’s different because I couldn’t just pick up the phone and call him. Remember, this was before cellphones and high-speed internet. No laptop with Skype or an equally easy way to communicate. Can you even remember those days? They seem so long ago.
Before K left, he told me to make sure I’m home everyday in the morning. I didn’t know what he was talking about. But the next morning, I heard the doorbell. I opened the door to a lady holding this:
The next day, the doorbell rings again. I opened the door and the same lady was at the door again handing me this with a BIG smile on her face.
I asked the delivery lady what was going on but she just smiled and shrugged her shoulders. The next day, K was still away in Cozumel, and the doorbell rang again! I’m like, really? Of course, I was totally excited! So I’m stomping down the stairs, grabbing the doorknob and yanking it open to this:
It was the same delivery lady and she was smiling again. I couldn’t believe that among all the hustle and bustle of K getting ready for this vacation that he thought about how I would feel while he was off on an adventure without me. We missed each other and this was a way he could let me know that he was thinking of me even though we couldn’t be together. There was only two other times that K has gone on adventure without me. After that, he told me that it just wasn’t the same to go on a vacation without me there to enjoy it with him. Here I was thinking that I didn’t want to hold him back from the fun he could have if he just went without me. So, did I continue to feel guilty for what I thought as me holding him back? Or did I trust what he said and love him more for the sacrifice?
Overall, he chose to live his life with me whatever that life together may turn out to be. Going through changes in my health has been difficult. It’s had drawbacks but we’ve always found a way to find an adventure together AND apart. Even though we were apart in this story I just told you, it was adventure we took together… connected by flowers.
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What I’m about to say is my own opinion and my personal thoughts about Life. I don’t expect everyone to feel the same way or believe the way I do. I’ve experienced quite a bit in my life that’s led me to feel the way I do about Life. Life is magical. It’s mysterious and unpredictable but also glorious and such a gift. I will say that I do believe in God. I believe we are all here for a reason. To me, Life is like a chain of reactions. Imagine, if you will, that you were never born. Now think of everyone you know, everyone who has seen you do something, everyone who you’ve come into contact with by doing a kind gesture or even a fender bender. Now imagine if you are a mother who’s given birth to children. You have children because you exist. Now imagine all those people and what their life would be like if you never existed at all. How much impact on those people’s lives have you made? Most of those people you will never know what difference you’ve made but it could be a positive one. I bet right now you are wondering where I’m going with this… right?
For a while now, and I know I’ve mentioned this before here on my blog, I’ve really thought about my life as a whole. I’ve thought about the people I meet briefly and I feel a little guilty that I don’t remember them… though they certainly remember me. I think about my family and what their life would’ve been like if I wasn’t born.
I often question myself when I’m out of the house doing my errands, in doctor offices, or just out to dinner… why do people remember me. Sure I use oxygen.. But it wasn’t until I went to my pain management doctor, I started wondering about all of this seriously. He looked at my chart with all my health problems and we talked a bit. He said that he saw that I’ve been through so much and I seem to be such a pleasant, vibrant person who can smile despite what I’ve been through. Then he said that I’ve been blessed, truly blessed. I was like truly at a loss for words. This is not me tooting my own horn. I just don’t know if I see myself that way. So, I often wonder why people do see me in such a kind light.
There are two reason why I am the way I am. I’ll be the first person to admit to you that I am NOT perfect. I don’t believe anyone is. Though, I tell K that I’m perfect in every way. I do have depressing days. However, I spread joy (that’s what I call it) because it makes me feel good and alive and I hope with all my heart that it makes someone’s day better. Also, I don’t want to imagine what my life would be like if I couldn’t find a reason to smile. So, I wonder sometimes what would it be like if I was never born. And in wondering this comes the HOPE that I have made a positive impact on someone.
Life is more than me. It’s about all of us. We are all interconnected and we need each other.
Life has been pretty interesting lately. The other day I went in to get a cervical CT Scan and noticed a sign that stated it was “Patient Appreciation Day.” Not sure what all that was about but since I’ve never been to this place, it sounded like they employed nice people. I arrived 30 minutes early partly because I wasn’t sure if I knew how to get there and didn’t want to arrive late and the other reason was because there is ALWAYS something to fill out or sign. I did find the building, only having to turn around once which is pretty awesome for me! I waited patiently to check in for my appointment while the reception lady was talking on the phone to whom I was assuming a patient. Ok she’s off the phone and yes, there was a form to fill out. But she said not to worry because it’s only one page. I’m like… YEA!!! Seriously, I said YEA!!! to her. She laughed. Of course, once I sat down and read some of the questions I was… like crap this is going to take a while.
Have you had any surgeries? If so, list them…
What medication do you take?
For many of the questions, I ran out of room on the page. I had to do the “turning the page sideways” to keep writing. Sometimes, I come to appointments to new places with a printout of all this information just to save myself time. When they called my name, they said for me to go into the room to the right. I have a really goofy personality. So I said to the guy, “OOoooh you have a whole room just for me!” Hey, it’s Patient Appreciation Day. I can get away with saying that. lol! It made the two people who heard me smile. Job done! Anyway, I get myself laid down on this really hard table… but hey, I got to keep my clothes on. I just had to take off my jacket because it had a zipper. So, all was cool for me until the tech guy said to close my eyes because eye movement can blur the images. Now, I don’t know if you realize that I’m a curious person. It was really hard keeping my eyes closed and not moving when all I wanted to do is look at everything in the room. Then I had saliva that I felt an overwhelming need to swallow right NOW but I couldn’t move. Why is it that when you aren’t suppose to do something, you really want to do it?
After I got my CT Scan done, I went to get my monthly lab work done since I take Tracleer. Every month since 2006, I’ve been getting my blood drawn from the same location on the same arm. But first the lab personnel and I had to figure out which order I was suppose to get done. The doctor had sent lab orders every 2 weeks for some reason. Let me just say that the doctor’s computer system has some sort of demon in it and it’s causing all sorts of problems. I asked them to do the CMP and the CBC and we’ll call it a day. The tech stabs me and says, “Wow, you have some scar tissue.” Well, of course I do. The needle has stabbed me there 12 times a year for 8 years. That’s 96 stabbings! Of course, that’s only counting the last 8 years. My poor arm! I think they are going to have to find a new drilling site for blood next time.
I finally made an appointment to see my Cardiologist to have him monitor my dilated ascending aorta. I’m a little nervous about it. I had to fill out a 9 page information packet for this appointment since it has been so long since I’ve seen him last time. My bad! hehehe!
Since it is April 1st, the HOPE (PH Awareness) necklace giveaway has started. You do not have to have PH to enter this giveaway. It is open to everyone, everywhere. If you want in on this giveaway, you must email me at firstname.lastname@example.org . Click on the HOPE menu link up at the top of my blog to learn more. FOLLOW my blog please. I don’t want you to miss any of my fascinating adventures! Be well!
Life is beautiful. You just need to know how to find that beauty. It comes in actions, in words, kind gestures, and even the small creatures that we take time to capture in pictures. Photography is one of my passions. It’s something I can do without tiring myself out. It gives me joy and that “feel good” feeling when I see the pictures on the computer. Sometimes these pictures end up in an Shutterfly book or a mousepad. Wherever the pictures end up, I refer back to them when I feel a need to give myself a boost. They make me happy. So, I want to share them with others.
Lately, I’ve been busy. I went to my niece’s wedding and reception and I took my camera. It had been a while since I felt the pull to take pictures. I use to be a real shutterbug. My family could tell you that I would be very obnoxious with taking oodles of pictures of them, much to their irritation. They would know that when I took out my camera, I would go nuts snapping candid pictures. But you know, once they saw the pictures, they liked them.
With my niece’s reception, I was glad that I took my camera. I kind of grumbled about taking it because I didn’t want anything extra to carry around. However, during the wedding, while we and other guests were in reception area, I learned that the photographer wasn’t staying for the reception. So, I immediately started snapping up pictures of everyone there and I took pictures of the cake cutting. There aren’t many things that I feel I CAN do but taking pictures was something that I could do that made me feel useful.
Feeling useful is something I struggle with. With my energy declining and my breathing ability getting worse, pushing myself to do things that are harder now gets to be an internal struggle. But keeping myself moving forward and staying active keeps me alive.
So, seeing all the little things that are beautiful, such as a butterfly in flight or a botanical garden that looks like a jungle reminds me that life is beautiful.
Don’t forget to enter to win the HOPE necklace, curtesy of Josephine’s Jewelry. The giveaway is open to everyone. Please click the menu link above to read the details and then email me to enter!!! Remember to FOLLOW my blog so that you won’t miss a thing! Love to you all!
A few days ago, K and I decided to step into another adventure by trying a new grocery store… wait for it… on a SUNDAY! Before you say it… it was NOT my idea. In fact, I kept asking him if he was sure he wanted to go to a new grocery store on a Sunday. He was like, Sure! So, that is what we did. We went to WinCo. I can only say that the store was so disorganized that it was so easy to get turned around and confused in there. So many people were stopped in the middle of the aisle looking for whatever it was they were looking for. Then some were talking on their cellphones and suddenly put on the breaks wherever the heck they may be at… which happened to be right in front of our cart a lot. Then, I saw the donuts! We were in the bakery section of the store. I had been craving glazed donuts for days. So, I grabbed a clear plastic box of 6 donuts while checking the date. Ok, they were fresh. In the cart they go. K looked at them and then ripped right into the box and took a big bite of one of the donuts. The look on his face was priceless!! I could tell he wanted to spit it out. *snicker* All he could say was that it was frozen. Naturally, that confused me and I felt bad for him (kinda!). I took a bite of his donut. I certainly didn’t want to start eating a new donut. First, I noticed that it wasn’t frozen but it sure tasted like it had been frozen and then thawed numerous times. YUCK! Now we have to go home with them. Don’t worry… they went straight into the trash. What a waste.
Anyway, I met a nice couple at the WinCo. They asked about my oxygen. That’s when I lost K. He went off on his own like most men do while their women talk to someone they met or know in a store. It must be a secret MAN skill or something. Of course, I didn’t bring my cellphone with me that day. I wasn’t able to hunt him down using a text message. I had the cart. So, he was going to have to find me. Mwhahaha! Don’t worry… I didn’t roam too far from where I was. We both agreed to bail on the grocery store by buying what we had and go home with that. Good gravy. They didn’t even bag the groceries for us. I got to do it! I say got to do it but I was secretly reliving my days from when I use to work at Walmart. I had a lot of fun. Though when I worked at Walmart, we didn’t have the plastic bags like that. I kicked butt by bagging the way I wanted my food to be bagged! I rock!!!
Yesterday, I went to a new doctor. I was a little nervous because it’s a pain management doctor who will hopefully help me deal with the migraine headaches that I’ve had since I was about 17 years old. If anyone has had one, you know that a migraine can make your life come to a screeching halt for days. Well, that is how it is for me. For the last few months, I haven’t been able to “Bounce” back from a migraine as well as I normally do. After having a migraine headache, I normally get a burst of energy that makes me feel almost like Wonder Woman. Because I have heart and breathing problems, a migraine to me, affects both of those problems badly. My heart will start skipping and my breathing is so strained from the stress of my headache. I can not take things like Imitrex or Maxalt. And taking narcotics like hydrocodone or codeine would suppress my respiration. All I can take right now to help me through headaches are Extra Strength Excedrin, Fioricet and Phenergan. But now with this doctor, I am going to learn about whether or not I can get nerve block injections. I first have to get a neck CT scan. Then I find out more after that. Wish me luck!
Today, I am cooking up a corned beef roast to chop up and fry up with hash browns and a little bit of onion to make some yummy Corned beef hash for dinner! K was very skeptical about it the first time I made it… but after tasting it.. I changed his mind about corned beef hash. YUMMY!! Although, for a long time, I use to eat the kind that came from a can. Homemade is better! My oxygen guy came a little early. Now I should be able to get in a nap! YEA! Please be sure to follow my blog so you don’t miss anything. The HOPE necklace is going to be given away in April! Be sure to send in your name, information, and tell me what gives you hope to email@example.com. Just click on the “HOPE – the giveaway” tab in the above menu to read about it.
Have a great day everyone! SPRING is coming!!! Can you feel it yet?
Just because airlines are now becoming more equipped to meet our modern technological needs, it may still be a while before power outlets on airlines can be used to power our medical devices. All I can say is ASK, ASK, ASK! The worst an airline can say is No. I’ve researched online to see which airlines are stating they are equipping their planes with power outlets. You can find the 3 most major airlines below. If you click on these links, you will be taken to a page that will tell you which planes in their fleet have outlets. All airlines have different rules and regulations.
Airlines have to follow the FAA Regulations and they also have their own set of rules regarding medical device usage inflight. Most provide a list of Portable Oxygen Concentrators (POC) they allow for inflight use. You must be able to fit it in an appropriate storage location for safety or purchase a seat for it. Once again all airlines have different rules and regulations. The five airlines listed below, are the ones that I could find a list for you to look at.
Before you even get to board a plane, you have to go through security. Getting through security with a piece of medical equipment means you need to read up on the proper way it’s done. I’m really serious here. You mess up here, you aren’t getting on that plane whether you have a ticket or not. So, please read these pages closely.
And finally, this link goes to an article written by a person who traveled using his Bipap inflight. He tells how he did this. It’s a good read and very informative. Just don’t expect his level of success. Every trip should be considered a learning experience. I would LOVE to hear from anyone who has successfully traveled using their Bipap / Cpap/ or just oxygen in flight. Please feel free to leave a comment to share your experience. We could all benefit from your experience!
Wow! This post made my brain hurt! lol! I hope it helps someone. Please don’t forget to follow my blog. You may enter the April 1st giveaway for the HOPE necklace. Just email! Love to you all. Stay healthy… by the way.. the dwarf trees are planted!!!