Being dependant on oxygen doesn't mean your life is over. I've found it opens doors where I never knew they existed. This blog is to help those who live with oxygen needs. It is also for the spouses, children, and others who help the individuals who are on oxygen to lead a quality life.
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As a reminder, PLEASE DO NOT SMOKE WHILE USING OXYGEN. Think of your health & safety. I reply to questions within your post on my blog. Be sure to check back here to read them.
In September, I'm going for an Echocardiogram to mainly check the pressure of the right side of my heart. If it gets any higher, then my doctor may add another medicine. Right now, I'm just on Tracleer and Symbicort. The new medicine is called Adcirca (tadalafil tablets) which is like Viagra. This new medicine is almost as expensive as Tracleer but there is a program that I could enroll in that caps the co-pay at just $20. There are some eligibility issues with this program. I'm not going to worry about it until after I get the word from my doctor saying I'd need to take it. Why worry myself over it right now, right?
With all this being said, I'm still stable health wise and I really did well on my vacation last month in Florida. It was a glorious time and the road trip was fun! I hope everyone is using great caution with the heat of the Summer. It's pretty brutal out there.
Drink lots of water when you have to be outside and stay in a cool, air conditioned environment.
Imagine my not so big surprise getting some information in the mail about Medicare changes with Durable Medical Equipment in my area. If you have Medicare or Medicare Advantage Plan, you'll want to contact visit http://www.medicare.gov to find out:
The new program starts January 1, 2011 in 9 areas (and 13 states across the US).
In other news, I'm really excited about Thanksgiving and Christmas coming up! Though we won't be having Turkey for Thanksgiving (totally inconceivable!), I did get a coupon for a FREE 12lb turkey from Krogers and my electric company! Who knew that paying those high electric bills would pay off someday with a FREE turkey! Ok I'll admit it. I've never cooked a turkey. I'm a little nervous about this turkey adventure. I'll be cooking it sometime between Thanksgiving and Christmas. So, wish me luck!
I got my flu shot on November 1st this year. At least that's over with... WHEW!!! I'm pretty sure I need a pneumonia shot too. I think it's been more than 5-7 yrs. I should really start writing these things down.
Well, I did it. I've hired someone to help me clean my house. I just can't do all the harder stuff anymore. Those things are the vacuuming, mopping the floors, scrubbing the tub and changing the bed sheets. It's helping with the sense of me becoming overwhelmed. I feel as if I can keep up the house better with help. There's no shame in asking for help when you need it.
Wow, this year we hit the road again for a special adventure that never fails to be exciting. We first loaded up our vehicle to it's fullest capacity with my oxygen, bipap, luggage, snacks, a ice chest, and a wheelchair. This time we brought along my new wheelchair. My husband has finally decided to accept that I just can't walk long distances anymore and have fun too. So, the wheelchair is here to stay. Doesn't mean I use it all the time. I still need my excersize!
We first headed, using the "scenic route," to Austin, TX. We made a wrong turn and ended up taking a shortcut. Yea for me because this scenic route was taking FOREVER! haha! In Austin, we had fun standing on the Congress Ave. bridge waiting for about 1 1/2 hours for the bats to fly out and feed. However, since it was rainy this Summer, there were plenty of bugs for them to not have to compete to eat. That meant, they didn't fly out but just circled around under the bridge. By that time it was too dark to take pictures because I forgot my tripod. Dangit! Probably would have been blurry anyway.
We also went to the State Capital where it was unfortunately under construction. There was scaffling all over the dome of the building. We took pictures posing with Mr. Chicken sitting on a cannon! Below is a link where you can see a few of my pictures I uploaded! At the capital, we had a little funny mishap. Mind you, we are new at this wheelchair thing and my husband said, "I'm going to try something..." (we were on a slight incline) Well, I didn't know he was going to let go of the chair to take a picture! Here I am rolling down the hill surprised and wondering if I should grab the wheels and possibly break my acrylic nails (it's a girl thing guys) or what? Luckily an iron park bench stopped my chair. My knee developed a nice bruise from that! OUCH! lol! Needless to say that when my husband wants to stop, he tells me to hit the brakes! haha!
After Austin, we drove down to Corpus Christi, TX. OH MY GOSH! LOVED IT! We stayed at the Radisson Hotel there on the beach. It was a clean beach and the water was like bath water. We stayed in a room that faced the Gulf of Mexico and had a balcony. We stepped out onto the balcony and looked to the right and there was the USS Lexington aircraft carrier. Yep, we toured the first level of it. I could do the rest because the climbing would have been too much for me. I was disappointed but I wasn't going to chance it because it was so humid in Corpus. We also went to the Texas State Aquarium which was AWESOME!
We then drove around and of course got so turned around because all the streets are one way for the most part. Finding the Landry's Restaurant (HIGHLY RECOMMENDED) was hairy but the way back to the hotel (a different way all together) was even more baffling. Thank goodness for our iPhones. Wheww! We also drove out to Mustang Island. We wanted to drive onto a side road that led to the actual Gulf (not the bay where our hotel is located) was. The first road we turned onto we saw a couple of young guys with their car stuck in the sand. Well, we stopped our car to help them out but parked it way way away from the sand. My husband is pretty smart. We had that happen to us about 17 yrs ago in South Padre Island, TX. Yikes!
We had a lot of fun this year on our roadtrip. I was pretty tired throughout the trip but held up ok. It took about 2 weeks to gain my normal feeling of wellness back after we got home.
Here are the pics: Click here to view 4 vacation pictures (let me know if this link doesn't work.)
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Once again, it's that time where we hit the road for vacation. Last year I went to Las Vegas and then onto California. Yes, it took a bit of planning where my liquid oxygen refills are concerned but it was worth it!
I have an iPhone and I found a nifty app that tells me the altitude of wherever I'm driving into. It's called GPS Tracker. We also used this app to have my husband's parents and my friend know exactly where we are at on the road at any time they log into the particular website to see the map. Every so often, while on the road, I would turn on the GPS Tracker and it would pinpoint our location to show up on that web-based map & give me the altitude of our location. (We took a pulse oximeter on that trip and steered around the mountains as much as possible) My friend & in-laws really thought it was great.
When I travel, even alone, I always let my family know exactly when I leave, when I make a pitstop (always at the same locations when driving up to Oklahoma), and finally when I get to my destination. I am freakish about safety. It came in handy two weekends ago, when I had a blowout. Don't worry. I didn't have an accident. Wheww but I ended up at the halfway point between home (where my husband was) and my sister's house. Thankfully I had Triple A which I really recommend for all disabled travelers.
For my next roadtrip coming up, we are not going too far away. I really am excited. We will be taking Mr. Chicken (our roadtrip mascot) along as usual. I finally broke down and bought a wheelchair at Amazon.com for only $143! I think I got a deal because it included free shipping! Wow! We'll be taking one 100lb tank and one 75lb tank of liquid oxygen and my little 3liter oxygen concentrator. Hopefully, I won't need a refill but I notified Lincare just in case. They notified the Lincare in that area that I may need a refill.
When I get refills on the road, I go to the Lincare location. They do not come to me. I chose to do it like that. We have to be at the Lincare when they first open up (usually at 7:30am). They all have been really nice about filling my tanks when we do it this way. I just have to call ahead a day before, at that particular Lincare, to let them know I need a refill and that I will come to them in the morning before their driver takes off for his route.
I also take an extra bipap mask, extra tubing & canulas, and make sure I don't ever forget to bring along the splitter that joints two canula tubings together so that I can use the liquid tank and the concentrator together. It saves me liquid oxygen that way. I set the liquid tank on 2L and the concentrator on 3L to give me my prescribed 5L/min. Pretty smart huh?
I'm sure you are wondering why I'm posting something about quilts on an oxygen blog. Right? Well, I met these two wonderful people who like to quilt and one of these ladies uses oxygen just like me. The mother and daughter team has a quilting hobby and they make the sweetest hand-made quilts. Please check them out at:
All things are going well with me. I've been staying very active even though it's hot, hot, hot outside. It's almost time for my next Heart Catherization which I'm dreading. I sure wish I could have MRI but that darn rod in my back prevents me from having one. Darn that Scoliosis!! Grr!
My husband and I are planning another roadtrip! I so can not wait to get out on the road with my Mr. Chicken as our mascot! haha! I'll keep you posted!
I was visiting my sister and her newborn baby. My sister showed me the Cpap gear that her baby used in the NICU of the hospital when her Oxygen Saturation dropped. I was so intrigued by the dainty size of it compared to my BiPap mask. I had to show you all. The nasal prong part of it plugs into the actual mask that covers her little nose. It looks like something you'd put on a doll!
I had a GREAT time at my sister & her husband's house. Their daughter is growing fast. I've been at her house for a week each month for the last two months. I think next month will be my last month up there until Christmas because the baby is getting too heavy for me to hold without wearing me out so fast. My sister has been great in including me and having me up there while my niece is still small. She weighs about 10 pounds now.
It's really rewarding to know that I can help them out with doing the dishes, feeding and caring for my niece and doing laundry. Though, it takes me a few days after I'm home to regain my energy. It's worth it though.
Holy smokes. This is a rough month for me. My husband and I took his parents to dinner last Thursday and that went well.. I had plans to go to the movies with my husband last Friday. Early Thursday morning, my brother's cat (who we were permanently babsitting) decided to take a nose dive healthwise. It was very unexpected and sudden. This cat weighs 20 pounds.. I kid you not. It was a crisis! So, I finally managed to get him in the carrier and to the vet. Mind you, I was carrying the pet carrier, my purse and my liquid oxygen tank (8 pounds) into the building. I was ready to expire! Anyway, the cat had to be put down. It was sad.
Later that morning, I realized it was O2 refill day. The guy shows up any given time. So, I had to wait for him. All I wanted to do was take a nap because it was SO humid outside. Well, my husband beat the O2 dude to my house. I asked him to wait for him for me so I could try to take a little nap before left. Didn't really work. I laid down with my bipap and oxygen on for about 30 mins. Couldn't sleep. Too keyed up over the cat dying.
Anyway, we made it to dinner with the folks and had a good time. Yep, I was tired. So, Friday rolls around and we were planning to go to the movies to see "Knight and Day." It was ok. But when I got up to leave the theater which was in the mall, the migraine hit. I knew I overdid it. Too much humidy and not enough rest. When I got to the car, I threw up all the way home. Yep, it was tragic.
The good news is that the headache was gone the next day but I took it easy in bed for most of Saturday because I knew we had to go to my husband's sister's house for the 4th of July. What a week!
Summers are HOT, especially down here in the South where I live. It's a big adjustment for me going from the cooler/cold weather to the Summer heat and humidity. It takes me a good month to be able to handle going outside and being able to breathe without feeling totally exhausted. While I'm out runnin around, I do only one errand at a time per day at first. Once I start feeling as if I'm able to withstand the heat (I always bring water with me to drink!), I add an errand to the list of things to do while I'm out driving around. I always pace myself. If I don't think I can get them all done, I leave it for the next time. I feel it's important not to push myself during the Summer months. It's just too hot. Air conditioning is so important for me. I have to be in an controlled air conditioned environment. Humid air makes me feel as if I'm breathing through a straw. It sucks, no really, it does! Currently, I have my dehumidifier (it's a Kenmore machine) that I use in the family room when I have trouble with the humidy. It's great! It sucks all the moisture right out the air and I have my husband drain the bucket when it's full. It keeps the area of my family room, kitchen & dining area at approximately 40% humidity. Not bad.
As for my back and hip pain, the doctors can't find anything wrong with my spinal cord or vertebraes. Wheww.. I had a myeologram done last month. That wasn't so bad. I was really nervous about the needle going in my spine. The part that was the worst was having a migraine that whole week before the proceedure and during and then afterwards. I couldn't take any of my migraine medicine for it 3 days prior and 2 days after the proceedure. Then after the proceedure, I had to remain lying down for 12 straight hours. I thought I was going to go bonkers! If I didn't have my iPhone, I would have drove my husband up the wall because I was so bored and with a horrible headache. I know, I know... poor me. haha! I survived.
I hope everyone is having a wonderful Summer so far. Please be sure to stay safe and drink plenty of water if you're out in the heat.