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.
This is how K looks out for me. He’s awesome. I meant to post this last year. I just wanted to show you that there are some really great spouses out there. There are so many things that are just too hard for me to do and that’s when K steps in and takes over. I love this man.
Me: (finally lying in bed with Bipap & oxygen on totally exhausted from working along side K to super clean the house) Thank you so much for your help K.
K: (while mopping the hallway) Is the music too loud?
Me: No. Right now I don’t care about the music or the light being on. I’m exhausted. What you’re doing is so appreciated.
K: (stops mopping) This is what you wanted done.. What you needed, right?
Me: What you’ve done is awesome. You’ve gone above my expectations. Thank you.
I had a GREAT day yesterday. Even I couldn’t believe what all I got accomplished on my own. I made it to the pharmacy and then decided, what the heck, I still have energy… I’ll go grocery shopping all by myself. I did find myself huffing and puffing my way into the store but I grabbed a cart and rolled it the short distance to the produce department while doing a little purse-breathing along the way. (Remember? K has been taking over the grocery shopping for the last 5 or 6 months. It’s been getting harder and harder for me to go along.)
I did a bit of “slow browsing” to give myself enough time to catch my breath and then away I go to shop to my heart’s content. No, I did not buy ice cream. But I did by ingredients to make cookies and maybe even turtle cheesecake. *drool* I even had fun saying hello to people I don’t even know, even the little kids. I had so much fun!!!
I knew I’d be tired when I got home because K wasn’t going to be home yet and I skipped my morning diuretics to get an early start on my day. So I grabbed a roasted chicken for dinner. Won’t K be surprised?!?!
I got home with my groceries and unloaded AND put them away! All. By. Myself!!! *super proud of myself* Next, I started dinner! Whaaaat??? How am I even doing all this??? I just don’t know. All I can say is….K sure was surprised because not only did I accomplished all the stuff I did yesterday, I even made a salad to go with dinner! Whaaaaaat? I think I scored some extra points with the salad. *grin* Who says men don’t like salad? After dinner, my energy was definitely draining. I could only rinse off the dishes but you KNOW I had just enough energy to sit down to crochet for a few hours while we watched some TV together.
It was a happy day yesterday and I hope I have another one again soon. I am paying for all of yesterday’s effort today. I’m tired, tired, tired today and when I told K that I was ready for a nap earlier, he politely reminded me that the Cowboys play at 3pm which is about 25 minutes ago. Argh!!!! haha! So, here I am with my bipap on, in bed, trying to power up for the game.
I’m happy. I hope I don’t mess up whatever I decide to make for my contribution to our family Thanksgiving dinner. It’s supposed to be something chocolate-flavored. That’s where the turtle cheesecake comes into play. *shrug* hehe!
I’m super excited to be going to the PH International Conference in Dallas this month. Hooray! I’ll be surrounded by so many people who have the same disease that I have. I hate to even call it a “disease” but that’s what Pulmonary Hypertension is. It’s a disease that has no cure but it’s slowing amassing some amazing medicines to help battle the symptoms that PH causes. We still need a cure. The conference is going to be a way for me to learn even more about PH. I want to actually try to find other people to have Pulmonary Hypertension who also has Scoliosis like I do. My PH is secondary to Scoliosis and Restrictive Lung Disease due to Scoliosis deforming my rib cage. Finding others like me will be difficult. Not many people out there like this. PH is a rare disease. I want to find those people and compare how they manage life with how I manage life and breathing. Maybe we could learn something from each other. *fingers crossed*
Before I go to this conference, I have to get through the next 9 days of the 10-day Halter Monitor I’m wearing to get a read on what my heart is doing. Tikosyn is not really helping my heart arrhythmias which is discouraging. The doctors didn’t believe me so I “suggested” that they do a Halter monitor to see what’s going on. We’ll find out one way or the other. Right? Like I said, *fingers crossed*
I’m actually impressed with the newer halter monitor that I’m wearing. It’s cool! I get a “Sensor” that has 3 leads and I wear it around my neck from an attached lanyard. Plus, there is the “Monitor” which is like a cellphone. When I have an “episode” with my heart skipping, I get to push a button on the screen of the monitor and go through a few questions about: What is happening? (I check: Heart skipping), What’s your activity? (I click either resting, mild, moderate, or heavy). So far, I’ve not had to click on heavy activity. I’m not crazy! haha! It’s raining and humid here. So, my activity is limited to indoors, low to minor-moderate activity because I get tired a lot faster in this kind of weather. There’s no telling what my carrots look like in my garden. I only have one orange left on my dwarf orange tree. The wind blew the others off.
If you want to see the many pictures of Klondike’s Adventure in Germany, you can view them all here… you don’t need an account to view them. My sister really did show my rubber chicken a good time so far. His trip is coming to an end soon. I’ll be meeting my sister and her family when they fly through on their way home. Maybe I should make her some more cookies! Shh! It will be a secret!
Stay well and be safe. Lots of love to you all! *heart emoji!*
Yesterday was so exciting! K & I drove to meet my sister & family at their hotel for a visit before they take off today for their vacation. It was so great! Yesterday, though, I got a text from one of my twin nephews asking if I’ll make his favorite cookies. The whole family loves Chocolate Oatmeal Cookies. I texted back.. “Of course I will!” I made a whole batch yesterday morning at 5am because I couldn’t sleep any longer. Before I started, I was kind of freaking out because I thought I ran out of sugar and thought I didn’t have enough 1-minute oatmeal but I finally found the new bag of sugar that was hidden away and the oatmeal ended up being enough. Whew!
I made Klondike a new hat, an English to German dictionary (like his French one), a fun tourist map of Germany, some miniature old newspapers of WWII as reading material for my chicken while on the plane, his wallet & money, his Germany Travel Journal (different from his Paris Journal) and his passport. My sister said she will get some German stickers to cut down to size to add as customs stamps to his passport. How clever is that? She’s very creative like me.
The first picture came in today as they are getting ready to head to the airport. Klondike is a PRETTY COOL DUDE! I can’t wait to share his adventure with you and hopefully brighten your days to come like it does for me. Being on oxygen, we need all the fun and exciting things we can get to help us get through life. So, even though owning a rubber chicken who goes off on adventures is a little silly, he does his job in brightening my day. He really makes me laugh so much! lol!!!
Klondike is wearing his fuzzy wolf ears from the hotel and enjoying his first Chocolate Oatmeal cookie. He’s ready to travel!
This is the cover of his dictionary. It’s only 2 inches tall. Everything fits in his backpack.
This post is more about becoming more motivated about living life while on oxygen. It has shown me that even though my year was filled with challenges, I still had many happy moments to add to my Happy Jar.
This is the happy jar that I made for my 2015 Happy Jar project. I filled it with written down happy moments that happened for me throughout the year. I’m now reusing this jar for my all-exciting happy moments of this year . If you’d like to read about what Happy Jars are used for, click and read my post that I wrote titled, Happy New Year!! It’s nearly 2015!.
Today, I dumped out the 2015 happy moments and started to read through them. Last year was a tough year for me. I struggled with motivation and breathing problems. With all of that going on, I didn’t think that I had slipped very many “happy” moments in my Jar. As I read through the “moments,” I found myself smiling while I remembered the fun and exciting times I had. This “Happy Jar” has been a great idea! In fact, I’m hoping to fill it up this year!
I hope you created one for yourself last year with me. If you didn’t, start one now! It’s not too late. You don’t have to be super creative with your jar. Mine is a clean Spaghetti sauce jar that I ran through the dishwasher and then painted and used polymer clay to decorate it. Give it a try and do it your way!
I thought I would share my happy moments with you. Let’s see how many I have. Maybe you will recognize some of them! Granted… not every happy moment of 2015 made it in the jar. It was fun pulling out the papers and reading the things I nearly forgot about that happened.
HAPPY JAR 2015
~ I just made a batch of Oatmeal Scotchies (cookies) and cleaned the mess. AND I’m not even tired from it! Hooray!
~ Results are back on the CT Scan. My aorta is only 4.3cm instead of 5.1cm. YAY! Whew!
~ Going to Oklahoma for 5 days for my birthday/anniversary!
~ I finished an afghan for my cousin’s baby! I love babies!
~ Made Rocco some doggy biscuits- homemade! He loves them!!
~ I finished the family Christmas photobook. I ordered an 8×8 book just for us to see how well it turned out. Can’t wait!!
~ My mother-in-law gave me a gift of a t-shirt that’s black with blingy cats. I LOVE IT!
~ Sore from painting last night. So, I made brownies as my motivational reward. Then, I continued taping trim and walls! Happy Day!
~ I finished my Happy Jar (added the cat on the lid) and made decorative papers for my Happy Jar! So Happy!
~ I sent an afghan to one of my parents! He wanted my name and date on it. Awwww!
~ I went to the doctor today to get the paperwork started for a new Bipap! Saw K at work, mailed a Need a Hug afghan, and then made dinner in the crockpot & cleaned up the mess. SUCCESS!
~ Family came for a visit and they tested out the Margarita Machine I got K for Christmas! Great weekend!
~ I’m so happy. K and I finished painting the family room walls, hung curtains, and pictures. Then cleaned our mess. It looks awesome!!
~ Klondike goes to Paris with sister and her husband.
~ Pictures are now coming in from Paris! Klondike is having a blast!!!
~ I finished Klondike’s Adventure in Paris photobook that I made for my sister as a thank you for taking Klondike on their vacation.
Oh my goodness… I have so much to catch you up on. First, let me show you my MacGyver invention that I took to two movies and a trip to see my sisters a few days ago. It enabled me to take both of my portable liquid oxygen tanks and not have to carry them myself.
Going to a 2 hr and 15 min movie with 2 tanks and this cart I invented to carry both tanks.
I put one of the portables in the bucket and strapped the whole thing in my van on the middle bench with the seatbelt. It worked really well! Next thing I need to tell you that my trial with Adempas is over. I didn’t do very well on it. I had a constant headache and my breathing had gotten worse. So, I talked with my doctor and she agreed to stop the medicine. Having Restrictive Lung Disease makes it hard to find Pulmonary Hypertension medicine that my body will tolerate. Right now, I’m back on 62.5mg of Tracleer twice a day.
Christmas was great!! K and I decorated the house again this year. Unfortunately he had to work on his days off but I had the energy to decorate most of the Christmas tree myself since I went slow. It took me a couple of days to get the ornaments on the tree. Here’s a couple of pictures of what we did.
Our 2015 Christmas Tree!
K made our table look great with a live tree from Jackson & Perkins.
I had fun crocheting some holly and berries… I turned them into knob ornaments.
My Mary enjoying the Christmas tree 2015.
When I was visiting my sisters a few days ago, we met up at Winstar Casino since it was the most central place to meet. My little sister is the one who went to Paris and she brought me back Klondike! It was good to get him back home but it looks like he is going to be a world traveler because my little sister said they will take him to Germany when they go. Germany!!! How cool is that? They really liked the Shutterfly book I made of all the pictures they took of Klondike in Paris. They texted them to me each day they were there. By doing this, it gave me a chance to travel by proxy to places that I’d never thought I could go. Overseas! Plus, I got a very awesome purse and a beret! Yippee!!
The French Beret I got from my sister!
I know I’m overloading you with a bunch of information but I can’t stop now! I have more news to tell you! This one is super exciting because I worked all year to accomplish this one. My dwarf Meyer Lemon tree, that I’m growing in a half whiskey barrel, produced 3 whole lemons for the first time ever and it took all year to grow them. I think I’m going to make lemon brownies with a glaze on top. I forget what they are called but I found a yummy Pinterest recipe. The lemons are HUGE!
It took one year to grow these!
I’m still crocheting Need a Hug afghans. Even though 2015 was pretty rough and my Happy Jar doesn’t have a whole lot of “Happy Moments,” I’m determined to make 2016 a more awesomer year. Yes, I said AWESOMER which is a new word I invented and I’ll say it until it catches on! haha! Have a great year everyone and stay well and warm. Sorry I had to throw everything at you in one blog post. Believe me, I could go on but, I’ll let you digest this post for a bit before I post more. Lots of love and hugs to you all.