I had a very long but fun weekend. First was the Pulmonary Hypertension doctor appointment and an Arterial Blood Gas drawn. Then we ate lunch at McDonald’s because we had other things we needed to do. We had to run to Walmart to return some stuff and pick up some forgotten thing from the grocery trip K did the previous day. Plus we picked up a new inhaler at the pharmacy. That was all on Friday.
When we came home from the errands, we got busy finishing up with cleaning the house because family was coming!!!! Yay!
After I made it to bed feeling exhausted, I knew I had to get up way early again for another appointment on Saturday that was a little over an hours drive away.
While we were at the appointment, my sister & her family already arrived at our house (we call it The Chateau), and we finally got home around 2pm. Yay!
We got to babysit my niece for 4 hours, which was super fun but by the time they got back, K and I were wiped out. My niece must have some sort of super-charged mega-battery that keeps her pumped up with energy. I asked to borrow it but I didn’t think it’s transferable. Darn!
We had so much fun but I’m glad we didn’t go to lunch with them today. It’s time for this girl to crash. I need sleep or at least down time. My niece is 7 and she asked me lots of questions (even taught me a two person hand-slapping song that was called Lemonade. I think?!) about my bipap mask that I was using when she snuck in my room to see if I was awake yet yesterday during my very short nap. She wanted her own cannula. She also wanted to see what it felt like with it connected to the oxygen.
So, like a fun Auntie that I am, I used it as a learning experience for her. I got her a 7 foot cannula (like the ones used with portable tanks), connected it to one of my oxygen tanks, and I turned the oxygen on to 2 liters first. She wasn’t really impressed. So I told her, “Ok, now this is was it feels like at the amount that I have to use which 6 liters.” Her eyes got really wide when she felt it in her nose and she said, “Whoa! How do you do that?” “Baby girl, I do it because it helps me breathe.”
I always want to make sure that she knows it’s ok to ask questions about me or my equipment. Curiosity can be a good thing when paired with learning about something that will expand her mind. We had a great time this weekend and I feel happy as I always do when I get to see one or both of my sisters. It’s like medicine to my soul. Sounds a little corny but it works for me.
Keep in mind as you read this blog post that K and I are very experienced with traveling while loaded down with multi reservoirs of liquid oxygen. We are safe drivers and we take precautions before we head out on the road for vacation to ensure that our vehicle is in what we call, “Vacation Ready” mode. That means we take it to our favorite auto repair mechanic and ask them to look at our vehicle and make sure it’s ready for a road trip. We ask them to take a good look at the tires, brakes, belts, and to change the oil. They fix anything that needs to be fixed because we don’t want to be miles away from home and have car trouble. Thankfully, we have AAA (triple A roadside service) Membership.
Everything we need for vacation, including medical supples.
When we plan a vacation, there are a lot of factors that go into the planning. The very most important factor is the location of my DME company in relation to my vacation destination. We also take into consideration whether there are any Lincare’s along the way. For the ones along our route to and from our destination, we could possibly set up a refill for my liquid oxygen reservoirs by asking my local Lincare office to set it up. The Lincare that I stop at for refills have to have the capability to fill liquid reservoirs. Some Lincare companies no longer do liquid oxygen.
This year we decided to find a beach that we’ve never been to before. We love the beach and for the past few vacations, we’ve only tried to rent beach house one other time. The only thing with this house that we rented on the beach was that it was on stilts. We didn’t realize the stairs to the house would be so darn steep. When we finally got the keys and drove the short distance from the office to our rental house, we pulled in and saw the stairs. We brought with us 2 – 100 pound reservoirs of liquid oxygen that weigh about 165 pounds full (but feel like you’re lifting a ton!). It took both of us, with K doing the lifting. I was standing behind him supporting his back with one of my hands pressed hard against him making sure he didn’t fall backwards. By the time we got that tank and the 75 pound reservoir up the stairs and into the house, we decided that the other 100 pound reservoir could stay in the vehichle since it was parked in the shade under the house. We were both sweaty and hot after that. It was so humid.
We planned an extended vacation this year. My health has been declining. So, we both knew that I would need extra days when we arrived in Alabama and even in-between to adjust to the heat and humidity. It took me 2 days resting off and on before I could get outside and start having fun. K was super kind about not pressuring me to do anything that I didn’t feel like I could do. I arrived at the beach house with a migraine headache because the drive was stressful for me. The first day we drove we stayed overnight at a hotel. We came out the next morning and found one of our tires was flat from a piece of wood embedded into the side wall of the tire. Luckily, K had a tire air compressor in the back of the van and he aired it up enough to take it to a tire shop where he bought a new tire.
The second day we drove, K stopped to fill the van with gas, it was my turn to drive this time. For some reason, as I was sitting there waiting for K to come back from the bathroom, the fuel light went on but the fuel gauge stayed at full. I don’t know what made me do it but I actually pushed the tripmeter to zero it out. At least I would know how many miles I’ve gone with the gas that I have in the tank. Anyway, the fuel gauge scared me by dropping all the way to EMPTY while K was a sleep. Ten minutes later, the fuel gauge would start raising back up to full and the light would go off. That was creepy scary. I let K drive after that. Apparently, there’s a wiring problem. Ugh!
After I was ready to get out of the beach house, I hit the beach! Even from the wrap around porch of our beach house on one day, we could see a few dolphins swimming off the coast!
It’s easy taking my oxygen to the beach. K had set up a tent with two beach chairs beneath it for me to relax and watch K wade into the water. When I wanted time in the water, K would either carry my portable on his shoulder and hold my hand as we walked into the waves OR he would have me connect my 50ft tubing to my portable and clip my portable to one of the beach chairs that he’d move closer to the shore. I’d bury the feet of the chair in the sand to give it more stability. I’d just need to sit my tank right in the seat with strap clipped to the top of the chair. Perfect! I could walk up to 50ft into the water or just sit on each of the tide.
Dolphins along the coast of Gulf Shores, AL
This is how I sit at the beach under a tent on low beach chairs.
Rocco would sit with me while I crocheted on vacation.
We went out to celebrate my 47th birthday and our 24th Anniversary!
We really had a good time on vacation. We didn’t want to come home so soon even though we spent 10 days in the beach house. I think next time we are going to try to stay longer. It all depends on how well my health holds up. *fingers crossed* YAY!
Most of you know that I’ve done YouTube videos about my Bipap or the “Meet Christine”, right? If you’d like for me to make another one, I’ll do a Q&A video if you send me your questions. They can be about me or about oxygen or just silly stuff. Keep them clean questions. Just message me or email your questions at firstname.lastname@example.org when I get enough for a video, I’ll make one. Sound like fun?
I finally figured out what I wanted to do with the 3 large lemons my dwarf Meyer lemon tree produced. What’s better than freshly squeezed lemonade? It was so delicious! If only my tree grew more than 3 lemons!
I made lemonade from the lemons I grew!
Here’s the updated picture of my January’s Need a Hug afghan. Get yourself on the list of recipients if you feel in need of a hug because you’re having a tough time breathing.
January Need a Hug afghan Update
GO Broncos!!! Need I say more? hehe!
Yes, I’m supporting Peyton Manning for the Super Bowl.
I’ll be attempting more gardening this year. K is building me a raised garden bed that will be about 16″ high. The size of it will hopefully end up being 2’x 6′ and 16″ tall on the ground. I’ll be growing potatoes, Bibb lettuce, cilantro, and spinach this time. Also, the chives and basil are what I grow every year. I hope like crazy that I’m successful and that it doesn’t make me too tired. K is going to build this extra garden next to the tall raised bed. That way my oxygen tubing will reach just fine. He’s so thoughtful. He had to move all my half whiskey barrels to make room. Aww… he’s so sweet. He loves me but this is his way of trying to get me motivated and outside so that I don’t become sedentary which would make my lungs weaker. I don’t need them any weaker. Trust me on that. erg! I’ll take pictures of the garden progress and blog about it! It will be fun!
So send in your questions and I’ll try to answer them. Think of it as a way to get to know me and remember, no question is a dumb question. If I can answer it, I will. Just keep in mind that I’m not a doctor. My answers are based on my experience during my life. Have a great week!!!
So, you use oxygen. Whether it’s 24/7, like me, or you use oxygen during activity, you should always know your limitations. The holiday season is now upon us. Heck, it’s been upon us since just before Halloween! Personally, I don’t understand that. I’m a type of person who loves to enjoy each holiday for what they stand for. Aren’t you? Though, I certainly can’t wait for K to start decorating for Christmas. He really has a knack for that. Remember last year?
Your limitations are your body’s warning signs for telling you to slow it down and pause for a rest. No one wants you to peter out before the fun starts…whether it’s board games or Football games –backyard or on the TV in your comfy recliner. I think everyone who reads my blog would want you to enjoy the holidays with your friends and family without risking your health by overdoing. Right, y’all?
So, what do you do? If you are the one who does the cooking for the holidays of the past but are now on oxygen, you can either pass the baton to another family member to cook the meal or delegate the whole meal as a pot luck. You can even prearrange by ordering a precooked turkey or ham from your favorite store and have it picked up! Save your oven for the important stuff, like PIE! Yum!
Plan on taking sit-down breaks that are uninterrupted. Got the meal under control or have someone else tending to it? Take that power nap before the meal. Teenagers are a great source for free help. Trust me… I was once one! They will do just about whatever asked to earn a chance to sit at the “Adult” table this year. You remember the moment in your life when you were given that honorary seat at the table where all the adults gathered to sit and eat (and talk!). It was….a beautiful day. *sigh*
With all the activity and excitement, even if you are not prescribed to use oxygen 24/7, you should always use your oxygen as your doctor has prescribed! You should never feel embarrassed to wear your oxygen. Your friends and family care about you and should always put your health as a priority. They want you to have fun too. So, if your body is telling you it’s tired but your brain still wants to get something done, listen to your body. Don’t be stubborn. Just get some rest and ask for help. People are actually willing to help you but most are just unsure how to be of assistance. Need something moved? Ask! Need help getting up from the couch? Ask! Is your oxygen tubing stuck around a chair leg? Ask for help! Someone STANDING on your O2 tubing??? Well, shove him off!! No… Just kidding! I always tell people when they come into the house that it’s ok to accidentally step on the tubing…just don’t stand on it and to watch their feet so they won’t trip. You need to not be afraid to speak up and ask for help. It’s really ok!
Wherever you go and whatever you do for the holidays, I hope it’s full of fun, love and adventure. Leave a comment tell me how you handle the holidays on oxygen! Be well and stay safe. —Christine
I’m a genius! Ok, well, maybe I’m not technically a genius or even very intellectually smart but I’m pretty darn creative. You see, I have a problem. I want to go to a movie. Normally that wouldn’t necessarily be a problem because K would go with me and carry my oxygen. Right? Yep. He would.
But what if this is a movie that he REALLY doesn’t want to see even though I have been waiting for this movie a whole year for it to come out on the big screen? Not a problem because I have a cart for my portable oxygen, right? Ok. That sounds logical. Just use my cart to pull my oxygen around so I won’t become exhausted from carrying it. Great!!!
Only one huge problem with that… the movie is over 2 hours long which means I’ll need two liquid oxygen portables. (Remember, I use 6LPM of O2) Not to worry because I have two portables. However, the problem is that I have a cart that only carries one portable. And before you ask or say it, I can’t carry one and drag one in the cart. I’d be wiped out before I got to my movie seat.
So now I’m in MacGyver mode. I came up with an idea last night. I don’t care what the end product looks like as long as it works to carry both portables with ease (and maybe even my purse too! Sweet!!!). All I need is my plastic tub that I use for trash in my van, my handy duct tape (my home is NEVER without duct tape!), and my luggage carrier. This morning I was looking all over the house for my luggage carrier and couldn’t find it. I thought my MacGyver moment was doomed already from the start. But, I texted K because he remembers EVERYTHING and surely he’d know where the carrier was hiding. In fact, I thought he took it to work. Don’t ask…
To my surprise, instead of a text reply, he FaceTime’d me back and he walked with me through the house to find it. I know why he did that. It’s because I told him last night that I thought about going to this movie on just one portable. He thought otherwise. With my breathing becoming worse while on the new PH medicine, Adempas, he put his foot down saying take both portables. He wants me to get out of the house more but wants me to be safe and smart about it. Sometimes I’m so excited about something that I don’t always remember I’m not really Wonder Woman. *GASP!!!* Shhhhh… Don’t tell anyone! Aw… He’s so sweet.
Now that I have everything I need, I will begin the construction phase of my MacGyver moment. I will build myself a cart for two oxygen portables! Wish me luck! Pictures of my hopeful success coming soon. haha!
I think everyone knows by now that I like doing silly things or creative things to keep myself in good spirits. I try to share these things to help others feel happy too. For those of you who don’t know who Klondike is… Well, he’s K and my road trip mascot who happens to be a rubber chicken (don’t laugh.. we take this pretty seriously! haha!). He really is pretty darn cool. Not only that, he brings us good luck and a safe journey to wherever we go.
This year Klondike has the opportunity of a lifetime. Who wouldn’t want to go to Paris, France? I know I do! However, with my breathing problems, I can no longer fly. So, my younger sister offered to take Klondike with her and her husband to Paris. They will take pictures of Klondike enjoying Paris and send them to me. It’s their way of helping me enjoy Paris too. They leave later this month. Last month, I got really busy preparing the things that Klondike will need for his journey… things like: a passport (teeny tiny size!), a French dictionary, a beret, a scarf, a backpack, faux money in a tiny wallet, a fun map of Paris folded like a Rand McNally map, a letter of consent for traveling with my sister, and even a little, tiny journal (with the first entry in it as Day 1) made from the banana paper she gave me from one of her vacations. Well, I think that’s everything. If you want to see some of those things, see my post here.
I’m pretty excited because Klondike has already made it to Oklahoma which is his first stop on the way to Paris. He’s already made a new llama friend. Klondike loaned him his beach hat! Wow! He also learned how to play the clarinet! My youngest nephew taught him how. It really sounds like Klondike is having so much fun already. Here’s a picture and a video for you to enjoy. haha!
Klondike met a new friend llama from Peru! He’s wearing Klondike’s beach hat!
You probably think I’m nutty for doing this but, honestly, sometimes I just need something exciting to look forward to. It helps me keep a smile on my face. Maybe I went a little too far with all of Klondike’s “belongings” but heck, I’m having fun. Pretty soon, I will be turning 46 years old and on that same day, K and I will be married for 23 years. I started dating him when I was 19 years old. So, that means we’ve been together for 27 years. That’s a pretty big accomplishment! haha! With my birthday coming up, I will get my “Week of Princess” treatment. I can’t wait! K is so sweet about it. I get to use the phrase…”but it’s my birthday” a lot and it even works! haha!
Ok enough for now. You all keep safe and stay well. *big hugs* 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?