Let’s be honest… I’ve missed blogging and I know it’s been since before my birthday (last month) that I’ve posted anything on my blog for you to read. In my defense, the last two months have been incredibly… what’s the word I’m looking for?… trying?…no. Hectic? You could say that. Let’s throw in challenging with a bit of a MacGyver twist and super stressful at times. If you wrap all that up and include my two road trips that I took (one to Oklahoma to see my family & one to South Padre Island for my birthday/25th anniversary), I have to admit, it’s been a pretty awesome adventure.
It all started with my birthday/anniversary vacation that we try to take every year. We both took turns driving down to South Padre Island which took us about 9 hours even while having to stop nearing every two hours (when K was driving) to get out and stretch our legs and walk the dog. Rocco loved sniffing new territory but I hated having to use convenient store or McDonald’s bathrooms. Not just because I never knew what to expect going into one of those things but also because getting in and out of the car and walking to the bathroom now wears me out and makes me short of breath in the worst way. That’s something new.
We made it to Padre and it was overcast but that’s ok because we knew Hurricane Harvey just past by and almost everything was up and running again on the island. Yay for us! Two days after we arrived, a boat washed up on the beach which drew everyone, including the Padre Beach police, to check the boat out. We should have set up a beach chair next to it and charged people for us to take their picture! It took nearly a week for the boat to wash up this far on the beach.
K and I normally go for a nice steak dinner for our anniversary celebration. But who knew that there wasn’t a restaurant on the island, nor close by on the mainland, that sells a good steak? Instead, we had a small party of two at our condo with a gigantic birthday/anniversary cake that K intended to share with the waitstaff had we gone to a restaurant. Thankfully we brought our big ice chest and I had some square foil pans to save the leftover cake to freeze and take home. You better believe that I ate it all once I got home (K had the last piece..darn him!). I LOVE birthday cake!
We really had a lot of fun and took a few goofy pictures. I was even a pirate! Argh! After ten days in Padre, it was time to go home and on the way home, the craziness began. We were north of Austin, Texas when it happened. I was reading and K was driving… thankfully. Our grill from the front of our van broke loose and flew over the hood and smacked our windshield and then continued over the top of the van. It scared us so bad. Thankfully, no one was behind us and we looked but didn’t see it land on the highway. We get home ok and called our mechanic to see what it would cost to get it replaced. $600! Are you kidding me? The thing was made mostly of plastic. K and I had the same idea… look on eBay for the part. K said he could fix it himself and I was, like, “You go Rambo…you get into that MacGyver mode!” Sure enough, it cost us a total of $200 and K attached it with no problems! YAY K!
What K didn’t tell me was that on the way home from Padre was that he was starting to see floaters in his right eye. Then when he went to work, he called his optometrist and they told him to come in RIGHT NOW. He had a detached retina. I was so worried because now he had to have surgery and this was his eyesight!. The first time I went with K to his optometrist, K told me that he had been telling the doctor about me because he has a daughter who has some similar health conditions. Let me tell you that I have no problem that K talked about me. I mean, I blog… so of course I don’t mind. I was really excited about meeting this doctor to learn more if he wanted to talk about it. Naturally, I knew this appointment was about K but I did bring a printed copy of an x-ray showing my scoliosis. This doctor was really neat and very personable. K and I really like him. But what excited me the most was his waiting room. Holy cow… the moment I walked into the building, I was thinking that EVERY waiting room should be like this one. There were crocheted afghans on a blanket rack next to the door and in each waiting area there was a card table with a puzzle to be put together. I immediately zoned in on the puzzle. K knows. I love puzzles and there was an older man sitting there working on the one I noticed. I just blurted out … “Oh yay a puzzle!!!” (I know you’re visualizing that.. aren’t you? haha!) The man heard me and started to get up saying that I could work on it. I told him to please stay and I can work on it with you. I told him that I love puzzles and this reminds me of when I worked on puzzles with my dad. Awww! I know, right? I was so engrossed that I didn’t even hear K’s name called by the nurse. What’s so awesome was that there was ANOTHER puzzle in the waiting room in the back! I was in waiting-room heaven!
K’s surgery went well but I wore myself out having to drive him to appointments and waking up to check to see if he wasn’t sleeping on his back for the first week after surgery. That was stressful but after the first week, he could sleep on his side but NOT on his back. You would think that it wouldn’t be a big deal but people move around while they sleep and K is accustomed to sleeping on his back. So, I had a lot of waking up to do to check on him. With everything that was going on with K, I truly had an eye opening experience about how much he does for me without complaining. He drives me to doctor appointments that are an hour away, he pushes me in a wheelchair when I need it, he takes care of everything in the background when I have migraines, not to mention doing most of the chores and all of the grocery shopping now…and most of this is done without me having to ask. I got a taste of what he does for me when I needed to take care of him for a change. I was definitely humbled and I gained a new appreciation for what he does for me. Not that I never appreciated it but my health is changing faster now, requiring K to do more and I don’t always see what he does for me.
Lots of love to you all! Don’t forget to subscribe to my blog to follow along! Leave a comment too! Have a great day!!!
This was a bad moment at the doctor’s office today. The doctor recently started having an oxygen tank at her office because I told her it would be a good idea. You know, just in case. Well, today was that just in case moment when my tubing snapped off as K was switching my tanks. We were all panicking until K remembered the recently acquired office oxygen tank (with cannula!) kept tucked away for emergencies. I had to hold my broken tubing onto my second full tank to try and get enough oxygen until they found another cannula. Thankfully, K moves fast and keeps a level head in a crisis. All I was in charge of was concentrating on breathing calmly until rescued. We have spare tubing in my van but that was in the parking lot 7 floors below. It would’ve taken too long to get it.
Life has a funky way of reminding me how fragile my body is but I can’t live in fear and never go anywhere. Lately, I’ve become a homebody because my breathing has gotten worse. I have to get myself out of the house more and I’m going I’m going to accept this challenge head on. Well, as soon as K fills my gas tank. I’ve decided that’s a “man’s job.” Honestly, I can’t handle the gas fumes. So, I have K fill my van for me.
What about you? Have you had some oxygen emergencies? Share your story in the comment section. Love y’all!
Throughout November and December, life was difficult because I was so depressed even though my sisters came for a visit on New Year’s Day. I finally got off of Tikosyn and back on Cordarone. I had to buy it from Turkey because the U.S. doesn’t produce brand name anymore. Don’t worry… I had the approval of my cardiologist, that I’ve seen for about 25 years, to take the Turkey Cordarone. So he knows me pretty well. Now that I’m back on Cordarone, I’ve started feeling more myself, as in my heart has settled down. However, I went through a month of feeling as if I had no motivation and all the Christmas stress was getting me depressed. K was noticing. It was definitely a struggle there for a while. I even stopped crocheting for about a week and a half. *SHOCK!* Whaaaat??? Say it isn’t so! I know, I’m surprised about it too. But don’t worry. I’m back at it and I finished the December Need a Hug afghan and have started January’s afghan! Yay! I still need to get the December afghan in the mail. Ergg… Sorry!
Because my breathing has been worse, I exchanged my 5 liter oxygen concentrator for a 10 liter concentrator that I use with my liquid oxygen. I still use a splitter that I can connect the two (concentrator with the liquid oxygen) to use together to make my liquid oxygen last longer. There’s another reason for upgrading to a 10 liter concentrator. I need a machine that will give me more oxygen for when I need it in the future. Plus, it will make vacations a lot easier because we will only have to travel with one 100lb liquid oxygen reservoir and one 75lb reservoir as well as the 10 liter concentrator. I’m thinking ahead for my future. You may be wondering why I still use my concentrator with the liquid oxygen bled in together. Well, the oxygen concentrator does not put out 100% pure oxygen like the liquid oxygen does. My lungs are very sensitive and they just need a higher concentrated level of oxygen. Plus, using 6L of oxygen from both 100lb reservoirs using the splitter (each on 3 liters) doesn’t last me a whole week. My O2 guy only comes once a week for a refill. I tried just the oxygen concentrator at 6LPM but everyday I slowly started feeling worn out. It’s as if I’d use liquid oxygen on 5L… I could do it but by the end of the day my body would feel weak and my breathing would be much more difficult. Here’s a picture of my splitter.
But now for the good news… K and I are planning to go to two concerts!! U2 and Roger Waters! K has been waiting for what seems like forever for U2 to announce a concert date in our area. The really neat thing that’s kicked me out of depression is that K has finally decided to help me do a MAJOR Spring cleaning. It’s not the type of Spring cleaning that you may be thinking of, but it’s more of the kind where you take all the stuff out of every closet and my craft room. We are sifting through all of it and deciding what to throw away, what to donate and what to shred. I have TONS of paper work to shred. We had to get an extra paper shredder so that K could help. The one I already have is slower and shreds less paper at a time. K is parting with his McFarlane action figures and he has a LOT of NHL series 1 thru 12 plus variants. (We are looking for a place to sell them. Most likely below cost.) We’re talking boxes and boxes of dolls. Oops! Did I just say dolls? I mean action figures. *wink* It’s good to get the house uncluttered. It makes me feel like I’m accomplishing something. I work on it everyday and even though it makes me feel exhausted, I don’t want to stop until my house is just the way I want it. Finally!
I plan on blogging more often. So keep coming back! Thanks for reading and stay well. *hugs*
By now, you probably realize that I went home with a seven day supply of Tikosyn. Hooray and Lucky Me! I get to be on another high-dollar Specialty medication that THANKFULLY my health insurance will cover. I’m kneeling down and thanking Jesus right now….and…. *amen!*
Getting Tikosyn from a pharmacy was a pain in the rear end because it is a Specialty medicine and it must go through the “specialty” mail order pharmacy which is different than the regular mail order pharmacy. I could have gotten my first month’s supply of Tikosyn through a regular pharmacy like a CVS or Walgreen’s but I would’ve had to pay $600 for the 30-day supply. Yeah, right. I don’t think so. I’ll do the little extra leg-work to get the prescription faxed to my “specialty pharmacy” myself. That’s what I did. I got the correct fax number, stopped off at a CVS, explained what I needed them to do (showed them my notes I took while on the phone with the specialty pharmacy while in my hospital room), and off the fax went into cyberspace to hopefully not get lost on the way. I called numerous times everyday until they could verify that they received it but it had one tiny problem on the prescription. There was no pill count on it, making it impossible for the pharmacy to process it. Now I had to somehow get the doctor’s staff on the phone with the pharmacy (each saying that the OTHER needs to call them first). OH! You’ve heard of that game too? Grrr… I finally got the pharmacy to put me on hold to dial the doctor’s number to correct the prescription. Finally, that’s taken care of which was great because I wasn’t going to go back into the hospital for 3 more days because they couldn’t iron this problem out in time. I had to have my 30-day supply within 7 days or it’s back in the hospital for me to restart Tikosyn.
Tikosyn is NOT a medicine that a person can take just whatever time she or he remembers to take it. Oh no! This stuff, I actually have to set my alarm clock on my cellphone at the same times everyday, twelve hours apart. Granted when I left the hospital, they had my doses at 4am and 4pm. If you know me like I think you should by now (okay… I’ll cut the newest readers a break.. Here’s your chance to learn something new about me. *cheesy grin*), I am a night person. I don’t like waking early in the morning because that’s when I get my best sleep. Makes sense to me too! So, over the first week and a half at home, I slowly bumped the night time medicine time an hour later every few days and adjusted the morning time accordingly. By the end of two weeks, my medication time was 7am and 7pm. That’s a bit more achievable for me.
Now that I’m good and into taking Tikosyn, I’ve noticed that my blood pressure is back to normal but I have increased shortness of breath which is very noticeable. I’m getting very discouraged because I went today to the Cardiologist who prescribed Tikosyn. He ran an EKG and said it was normal and that my shortness of breath isn’t from the heart medicine. If I got paid for every time I heard THAT sentence…well, I could buy myself a whole lot of ice cream with the money! Ugh! I just realized I’m out of ice cream too! I should have stopped on the way home. Drats!!!
My cardiologist said for me to talk to my PH doctor. Sometimes, I feel like I’m on a Merri-Go-Round without all the pretty horses to ride. Or is that a Carousel? At least I still have things to look forward to in life. It looks like Klondike, my rubber chicken will be off on another adventure next week and next month I will attend the PH International Conference. I’m super excited about both. My next post will be about Klondike’s adventure! Stay tuned in!
Be well! Don’t forget to subscribe to my blog so you won’t miss anything exciting!
Sometimes it’s hard to get motivated to get my butt outside, especially when it’s either cold or hot outside. K likes for me to stay as active as possible while on my days of feeling good. He also likes for me to push myself a little bit (just a little bit mind you!) even when I don’t feel 100 percent. Ok, well, that’s virtually everyday but let’s not be technical about it, right?
So, what gets me excited enough to get out in my yard? Gardening! Not just any kind of gardening, you know… With flowers and what nots.. I’m talking about growing food! Now my yard isn’t big. K says it’s about the size of a postage stamp but I make it work for me. That’s right… I use raised garden beds and half whiskey barrels because, having Pulmonary Hypertension, bending down is difficult for me. This year, I’m growing potatoes (red & white), spinach, carrots, cilantro, thyme, chiles, Bibb lettuce, garlic and a few onions.
This year (2016) K built this raised bed for me to have more garden space.
Last week we had 2 major hail storms that damaged our house and K’s car. I feel a little bad because my van was in the garage. hehe! Here’s a picture I took of the second storm. It was so loud!
This hail did some damage to our house and to K’s car.
Thankfully, and quite unbelievably, my gardens survived both beatings! Maybe it’s because of the netting I have over them. I use it to keep out the bugs. I’m looking more and more like a farmer everyday! Even my dwarf orange, lemon, & lime trees survived.
My first attempt at growing carrots!
My first attempt at growing Bibb lettuce.
Because I use a Bipap, I tend to have a problem with too much air in my tummy sometimes. When I eat iceburg lettuce or onions, it only makes the problem worse. I like salad but most salads have iceberg lettuce in them. I can eat spinach with no problem though. I thought I would try growing the Bibb lettuce as a way to eat a Spinach & Bibb lettuce salad instead.
I like to work around any problems that come up. I call it MacGyvering! Don’t forget to follow my blog to stay up to date with all of my adventurous moments. Happy Easter Sunday everyone!
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!!!
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.