Why Do They Make It So Hard?

It's been a very long time since I posted anything here. But, I want to vent about something that I think is important, and since I have this forum, I may as well use it. You may not think it's important, and that's OK, but it might make you start thinking.

My husband has been on oxygen 24/7 for almost a year now. He has emphysema and COPD. Not surprising after 40 years of smoking 1-2 packs of cigarettes a day. Now, this isn't going to be an anti-smoking post, just giving you some background.

When we leave the house, he uses portable tanks. Small ones that can be carried last about an hour at the flow rate he's on. He also has some larger back-up tanks to use it the power goes out or for longer distances that last about 5 hours. There are portable concentrators (the machine that extracts the oxygen from "air" and pushes it through the tubing) that run on batteries so there is a constant flow and, as long as your battery doesn't die, you don't have to worry about running out. All the powers that be say they want oxygen patients to live as full and normal life as possible, and there's the rub because after saying that, they make it as difficult as possible. Let me explain...

Bill is a patient at the Mayo Clinic in Jacksonville, Florida. We live in Arkansas. Twice a year we travel to the clinic for check-ups. These visits include several appointments with different departments which mean several hours on the clinic side of the facility with lots of walking. We just completed one of those visits, and this is his "annual" visit, which includes more appointments than the semi-annual one.

Two weeks prior to leaving I contacted our oxygen supplier to see if we could get one of the portable concentrators. These also come with AC/DC adapters so that he could just be plugged in while riding in the car. I could also plug it in in waiting areas if need be. Two days before leaving I found out that we could not get one of them so I arranged for us to get extra large tanks to use in the car for the 2 day drive. We would also need one for the first day of appointments. Then, a local supplier would replenish the tanks to get us home.

The first travel day used 2 of the large tanks, which I expected. The second day used one of the tanks. I should also explain that we have a small concentrator that is used in the hotel rooms. We had 4 of the large tanks, so we now had 1 tank left for the 7 hour day of appointments. Since I had arranged for new tanks to be delivered to the hotel Monday afternoon or Tuesday, I was comfortable with the supply we had left. We also had 4 of the 7 small tanks left. I did not receive a call from the local supplier and when I called our supplier, we had 3 1/2 hours of portable oxygen left. I was assured that the local supplier had been notified, but she called them again. Tuesday was an easy day as far as appointments went, but when they were done, we were down to 1 small tank. I called again and this time got a call back telling me that the supplier didn't deliver, but I could take the empty tanks and exchange them. Now, these tanks are about 2 1/2 feet tall and there were 4 of them, plus a 6 pack of small tanks. All of these, even empty are heavy. But, we loaded all of them into the car, programmed the navigation system for the address and set off, during the first part of rush hour in a city I'm not really familiar with. But, we managed to get it done and I could relax a little. His next day of testing was an outpatient procedure that would take several hours, but I knew he would be attached to hospital air. I had a full small tank in my backpack for him to use when he was discharged. Things went smoothly and he didn't need to stay as long as expected. While he was getting dressed, I attached the regulator and tubing to the new tank but when I used the key to open the valve, all it did was spin. So, this tank was useless. Luckily I had not taken all of the big tanks up to our hotel room so, when I went to the car to meet him at the door, I got one of them ready. We also got another small tank that let all of the air out as soon as I opened the seal. We left the next day and when we got home 2 days later, we had 1 full big tank and 1/2 of a small tank.

Some of you may be thinking that we made it there and back, and even though it was difficult at times, what's the problem. So, I'm going to let you know more what it's like to travel with all of those tanks, and only on their usage, not on how to pack them into a vehicle. Also keep in mind that my husband is 74 and I'm 62.

Starting out using big tank #1. Stopping for a potty break/lunch, disconnect from that tank, change to small tank. After the break, back in the car, disconnect from the small tanks, reconnect to the large tank. Stop to change to big tank #2 at the gas station, changing also to small tank #2 to use the facilities before the big tank. Arrive at hotel for the night.

Day #2 big tank #3, but since it was a shorter day, didn't need to use #4, but used another small tank. Our supply has now dwindled to 1 large tank and 4 small tanks.

First day of appointments, connect last big tank, but carry 2 small tanks for back-up. Was able to be seen a little early for some of the appointments so back-up tanks weren't needed. Down to 3 1/2 small tanks for 2 more days of appointments. Remember, these small tanks only last about an hour and we needed to go out for meals. First call made to supplier.

Day 2 of appointments was a short one, but still used 2 1/2 tanks. Now down to 1 hour of portable oxygen. Second call made to supplier and then the trip to pick up new tanks.

Day 3 used small tank and then had first bad tank episode.

Day 4 used big tank that was used in the emergency situation with the bad small tank. After stopping for gas, swapped to small tank to use the facilities and then changed out big tanks.

Day 5 used 3rd big tank and last small tank before arriving home with 1 full big tank and maybe a small tank.

All of this could have been much easier with one of the portable rechargeable concentrators. I told Bill that I would not do this again. There are places that rent the portable concentrators for travelling for about $500/week. To me, that would be well worth the money not to have the stress and aggravation of changing the tanks. We see our pulmonologist in August, and I'm going to see if she will write the order for one of those.

Now, some of you may be wondering why we just don't fly and get there sooner. It would still take more than 1 of the small tanks since it would most likely mean a layover somewhere. And I don't think the tanks are FAA compliant. The only other alternative would be to move to Florida, but we would still be in the same boat.

So, my question is: Why do those in the position of making these decisions make it so difficult? As I said, they tell you that they want you to live a full and active life, and then they make it so hard to do. It's no wonder that so many oxygen patients become shut-ins. I would like for one of them to have been in the car with us to see just what it entails with all of the tanks, but there wouldn't have been enough room!

OK, thanks for letting me vent. I'm thinking about a letter writing campaign to senators and representative, Medicare, Tricare and anyone else in the position of making decisions for someone they've never met. But, I doubt that it will do any good. If anyone has any suggestions, please comment and let me know what you think.

Independence Day

Independence Day was probably my dad's favorite holiday. He was in charge of our town fireworks show and I think he began planning the show for the next year as soon as the final tube was pulled from the ground.

I remember going with him one year to the firework factory (I don't remember where it was, but it had to be close since it was a day trip). I stayed close as he talked to the salesperson, not understanding just what they were talking about. But, I was out with my dad for the day.

At some point prior to the holiday, our garage turned into a shop. He would build "set pieces" in our garage. I don't think those are used much anymore, and for those of you who don't know what they are, the are pieces that are put together in such a way as to make a design, or say something. I remember there was always one that was supposed to look like Niagra Falls.

Early in the morning on the 4th, dad would move everything to where the show would be held. My early memories are on an island in the middle of a nearby river. The area was turned into a sporting club with swimming pool and sat up high from the water, so it was the perfect place. Later it was moved to the town fairgrounds. After everything was moved, Dad didn't come home until after the show was over. But, he wasn't idle! He used that time to position the firing tubes. He would use a post hole digger to put the tubes into the ground. Using these tubes is what gets the bombs higher into the air. He was also protecting everything from vandalism.

At 12:00 noon he would start firing announcement bombs. You know, the ones that just explode and make a large noise, but don't have any color or design to them. He would fire one every hour until time for the show to start.

We used this day as a family day as did most people. Mom would fix a picnic for us, fried chicken, baked beans, and all the other fixin's and we would take it to dad for supper. Then we kids would play until time for the show to start.

I remember one time when the town cut the budget for the display, and then complained when it was not as elaborate as prior shows. Dad just told them they got what they paid for. After that there were no complaints about cost!

I had my first taste of beer at a firework show, and I've never liked beer since. Dad used to shoot shows for other towns on occasion. He was shooting one in the town where he worked, at the UAW union hall. After the show we found dad and he asked if I wanted a drink of his milkshake. I looked into the cup and saw thick white and took a drink. What I had seen was the foam on the beer! I don't remember if I spit it out or just made a face, but dad and his buddies thought it was quite funny!

One of our other trips was to a suburb of Chicago. I remember an older woman with only one eye telling us that she looked into a trash can that someone had thrown a firecracker in and when it exploded it blew up in her face. We assured her that dad made sure we were taught about them and that we could handle them safely. All he would let us have at that time were sparklers, sometimes ones that were 3 feet long.

The trip that stands out the most was a 2 city trip. We started out in Clarksville, IN on the 3rd and it was an uneventful, normal show. We then headed to Frankfort, KY. This year my uncle, (dad's youngest brother) and his wife were with us. Dad was driving the firework truck and had my brother and a friend with him. My uncle was driving Dad's pick-up and Mom, my sister and I were in the family car. We had a good time at the hotel pool while Dad and my uncle set up the show.

Dad used hazard flares to light the fuses. They burned for a long time without a flame and they would carry extra ones with them. My uncle had some extra ones in his pants pocket and after lighting a fuse, he turned away. I don't know if the fuse malfunctioned, or if the bomb exploded too soon after leaving the tube, but it caught the other flares on fire. He started to run when he saw fire and Dad tackled him to put the fire on his pants out. Mom and my aunt followed the ambulance to the local hospital and left us to wait for Dad. Dad finished the show and then told us to start pulling the tubes so that he could get to the hospital faster. Those things were not only hot, each explosion pushed them further into the ground! After getting everything packed up he took us back to the hotel, gave us strict orders on behavior and went to the hospital. My uncle had severe burns to his thigh that would later require several skin grafts. When he was cleared to travel, we were quite the caravan going home. Dad was in the lead with the fireworks truck, Mom was driving the pick-up with my aunt and uncle on air mattresses under the camper shell, and my sister and I were in the rear in the family car. She had recently gotten her license and we had, again, very strict orders from dad. If he went through a green light and Mom went through on yellow, we were to run it to stay together. We made it home just fine, but that always stuck with me.

Dad was looking forward to the 1976 bi-centennial celebration, but, sadly, he passed away in November of 1975. My uncle continued to shoot shows for several years, along with his son and my brother.

So, as I watch a firework show, I compare them to the ones Dad shot, and most of them don't come close. Even though many are shot by fire departments, they don't get them high enough and there doesn't seem to be any imagination to them. I've only seen one that was better than Dad's and that was within the last 10 years.

Be safe with your fireworks tonight, and think about what they represent...freedom!

Armed and Dangerous?

Been awhile since I've thought of anything to write. I have always hated finding blogs that haven't been updated for long periods of time. But, since I made no promises how often these posts would come, time passes.

My son-in-law is a certified concealed carry instructor. He and my daughter are both licensed and both almost always have their weapons with them. Getting a concealed carry license seems to be the new thing to do. Most people blame the breakdown of society as most of us know it to be the reason to get the license. 

I don't feel the need to get licensed, or to even keep a weapon in the house. Don't get me wrong, I'm not anti-gun. I was raised in a home with guns, stored openly and unlocked. My dad was a gunsmith and dealer. He was also an avid hunter and taught all of us kids to shoot. We were also taught to respect the weapon and that it was never to be used as a toy or against another person. I once asked my mother what they told us to keep us from bothering Dad's guns. She said they didn't say anything special to us. We knew that they were his and not ours and we didn't mess with things that weren't ours. My son was raised with guns that again were not secured and he didn't touch them as a child either. That's one thing that boggles my mind when I hear about a child shooting another child. Why aren't they taught that if it isn't theirs, they don't need to touch it. I guess that's the problem, we aren't teaching our children to respect the property of others.

Even after we were broken into and had our home ransacked and many items stolen, I still don't feel the need to be armed. It wouldn't have made a difference if we were armed or not, we were not at home. It would have just been another thing stolen.

I guess I'm just a fatalist. If it is my time to go, if I'm ever confronted by someone armed, it's my time. Just as I said I would not let the thieves win by being afraid to leave my house, I will not live in fear of being shot by someone who feels that is the only way to get what they want.
Maybe that's naive in this day and age, maybe not. Call me crazy, but that's the way I feel.

Mortality

For most of my life I haven't thought about death a lot, but I have been lately. Maybe it's because my best friend just lost her mother. She lost her father about 2 years ago and since she's an only child, she's feeling a little lost. She told me yesterday that at 64 years old, she's now an orphan.

I think about my own aging mother and can't imagine life without her. We don't live in the same town, only see each other a couple of times a year, but talk frequently on the phone. Yet, just knowing she's where she's supposed to be is comforting, and I can't imagine her not being there. I know her health is failing more now, and when she does pass away, I, too, will be a orphan. But, I have a sister and brother so there will still be a family connection.

I've also been thinking some about my own mortality, even before Jean's death. I've noticed that my body is not working like it used to. I was explaining some of my aches and pains to my sister and she told me that a friend of hers had the same symptoms...right before she fell and had to have a hip replaced. My first thought was that I was too young for a hip replacement! But, then I realize that I am in my 60s, so I'm not too young. 

That seems to be my dilemma. My mind still thinks that I'm in my 40s. I won't say 30s, although sometimes that is what I find myself thinking. Then I have to realize that it's 20 years past that point and I am indeed old enough for a hip replacement. Which then brings us to another problem.

Since I am my husband's caregiver, I can't afford to be sick or laid up in the hospital or rehab. While he is able to care for his personal self, he can't remember to take his medications on time, or even fill his weekly medicine containers. He doesn't remember to eat or drink, and I don't know if he would be able to cook something for himself if he did remember. So, I need to be extra vigilant in taking care of myself, right? Yeah, yeah, yeah, I get it. Easier said than done.

Because I feel good most of the time, I don't take care of myself as I should. Again I think I'm too young for anything bad to be happening. But who knows what lurks inside that could be a disaster in the making! Is it better to know that there is a very aggressive cancer, or is it better to be happy, living a "normal" life and take what happens as it happens? Another conundrum!

Thoughts in the Paris aftermath

I haven't written anything here for a long time, mainly because there were too many things that I wanted to write about that I didn't know where to start. But that changed yesterday and today.

Like most people, I'm shocked and saddened by the events in Paris yesterday, along with the bombing of the Russian airplane and the attack in Lebanon. Yet I'm almost as shocked by some of the things I'm seeing on social media in response to these events.

Instead of banning together to offer support and prayers to the people of France, most especially those who were injured and those who lost loved ones, people are already looking to place blame on someone. It seems that they have to blame someone, anyone, other than the actual perpetrators. I've read articles, along with the comments, that place the blame on President Obama. There is also blame placed on all of the recent refugees from Syria. The writers "knew" that they weren't innocent citizens being displaced, they were all terrorists.

All Muslims have been declared terrorists by people who claim to be patriots. I've seen posts on social media by people that I have a lot of respect for calling for the killing of all Muslims, some of them Christian pastors. That hurts me deeply and I can only imagine what Christ thinks of this. Don't they understand that this attitude makes them just as heartless as the terrorists, which makes them win this war. When we become as hateful as they are, we are no better than they are!

I've had these thoughts swirling around for a long time, pretty much since President Obama was elected the first time. The hatred that has been espoused, again from those who call themselves Christians, is mind boggling. I've also been told that I can't be a "true" American patriot if I voted for him. Why? Is it just me? Am I the one with the wrong thinking?

I'm so sick and tired of all of the Obama bashing. It doesn't matter if you like him or not but he is the President of our country and deserves the respect that the office demands of all of us. We don't have to like or respect the person holding the office, but we do, or should, respect the office of the president. That's how I was raised anyway.

So, I'll pray for Paris, and Russia, and Lebanon, and America. I'll pray for those who believe that the only way to get to heaven is to kill all those who don't agree with the way they think. I'll also pray for those who think that their way of thinking is the only acceptable way of thinking. I'll also pray that God gives me the wisdom to discern His plan in all of this, and show me the right thinking that I need to do.

Now that the dam has broken on writing again, maybe there will be more posts of the things on my mind and heart. I'm not sure that there will be many in agreement with me, but maybe it will give something for them to think about. After all we have the right to our opinion without being vilified for it.

There are so many thoughts swirling around in my head...
Where to begin? Do I start with this?
Or maybe this?
I can't seem to concentrate on any topic long enough to form really coherent thoughts...
Pet peeves, profound thoughts, ideas...
I guess I'll just stop and write nothing...
At least for today, and maybe tomorrow.

Hypocrisy

There has been much in the news lately about the Duggar family concerning a molestation issue that surrounds Josh Duggar. I have thought about this before deciding to voice an opinion, so here's my take on this.

I can understand the family's thinking....somewhat. No one wants to be in the middle of a scandal, no matter what the cause. I'm sure they thought like most of us would "What will our friends think, or what will the church say". So, they talk privately to those involved and keep it quiet. 

I get that. That's a natural reaction.

What bothers me most about it is the hypocrisy. While this event was apparently happening, Mr. Duggar was stating that sexual crimes should be made capital crimes. Had he considered that this might affect his son, if this would come to pass? I doubt that. Since everything was handled privately, why would he then want his child to be executed for that very thing? I believe that they considered themselves above the act and punishment.

I also think it is very hypocritical for them to state publicly that certain people are a danger to children. By this I'm referring to their stance against homosexuals. So many people are afraid that the "gayness" will rub off on their children, and that every gay person will assault every person they meet.

I've read a great deal of comments where other commentators (I don't know if that word is the correct one to use in this situation) have been reminded that Jesus said that "ye who are without sin cast the first stone". But it doesn't just apply to the ones who think the Duggars mishandled the situation. I think it also applies to the Duggars themselves. This admonishment by Christ doesn't say that it has to be the same sin, only that a person hasn't sinned. For them to apparently take the abuse situation so lightly and then condemn another person because of their lifestyle flaunts this.

I truly hope that Josh does understand that what he did, even though he was a teenager, was wrong. I hope the girls involved were able to get some real help, not just told to turn the other cheek.

I heard a comment the other day concerning the tv show. This person thought that maybe it shouldn't be cancelled, but the incident be used as truly reality tv to show who real issues affect a family and how they could now learn and grow from it. We'll just have to see how it all plays out.