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Posts Tagged ‘COPD’

When you have been married for twenty years to someone who has COPD (Chronic Obstructive Pulmonary Disease), I rather think it is NOT like a normal marriage.

After all, nothing is normal. My home is totally scent free. I spend hours poking bottles of shampoo and conditioner under his nose to see if he wheezes. One day, I will be arrested in Wal-Mart for killing my husband by scent.

Medicine is delivered in boxes and this man, who turns 57 this year looks like he is 90. When we go to a restaurant, they seat him with my mother. No one asks, but he is given a Senior discount. He sleeps with a Cpac and oxygen is just around the corner. He is bent, and sallow and coughs, sneezes and spits all day long.

Have I ever mentioned that I have a thing about spitting? Probably not! That “thing” would include not mentioning it as it grosses me out so completely that I try to avoid it at all costs. Somewhere, in my past life, I have apparently done something that Karmically gave me a husband who must spit to survive. Enough on THAT subject!!!! Gross!!

The one thing that I have noticed though, is that people change when they are ill. I think we all change a bit as life progresses; hence, the stupidity of marrying at seventeen, or perhaps ever. But, he has really changed and lately, not for the best.

We have all discussed it; we being the boys we raise and myself. It is a universal agreement that he is really acting strange.

First, there is his obsession with the yard these last two years, which I am convinced, will kill him. We own four acres, some woodland, but lots of grass. I mowed the first ten years of our marriage, no one mowed in Wyoming. Okay, he mowed our sand and sagebrush maybe twice a year. But, we are in Indiana again and he spent most of the summer mowing little patches of lawn each day. I guess, if it didn’t kill him, it’s good exercise.

His increasing weirdness also encompasses his moods. He has gone from easy going to a real pain in the behind. He gets on a ‘kick’ and drives everyone crazy, nagging, until it is done.

Gaffer came up with probably the best and saddest reason. He is facing his increasing disability and does not want to face it. It is better that he fights it than just gives in. In the meantime, the boys keep him busy with game night, every night. It has been a constant in their lives.

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I pick on husband quite a lot in this blog.  But, this morning there will be no picking as he has received yet more dire news.  As if twenty years of COPD was not enough!

 

We were hiking, out east, when I came down with flu.  It mostly consisted of a bad headache and exhaustion, but it was enough to send us back home again.  I drove most of the way, from the eastern coast to Indiana, as I recovered and he had become ill. 

 

Round after round of doctors followed for years after, as one clinic/doctor after another eliminated diseases. It was not until we found Jacob Bitran, M.D., who was, at that time, with the University of Chicago, that Roy began to receive help.  Modern medicine has kept him alive since.

 

He smoked for one month total in his whole life, but his father was a smoker and he came into contact with so many chemicals, over a sixteen year period at LTV Steel, that the doctor at Mayo threw the list across the desk and said that there was no telling what caused the COPD as any number of the many chemicals he came into contract with could have done this to his lungs.

 

He tried to work for years, after he was diagnosed.  On the days he worked by the chrome line, he would miss two to three days of work after.  Some days, he would drive all the way to East Chicago, from our home between Griffith and Merrillville; he would get out of the car and walk to the guard shack, where he could rest; then he would walk back to the car, rest and come home again.   It finally got to the point where he felt he just could not do this to his co-workers any longer, as they were working harder to make up for work he could not do.  The mill was wonderful to him and allowed him to keep his job for much longer than any small business owner could have done.

 

On the outside, if you did not work by him or live with him, he looked perfectly normal.  That is unless you were wearing perfume or some such.  To this day, people will sometimes hint to me that there is nothing wrong with him and he is just lazy. They usually only do that one time, as I let them know what life is like for this fifty-seven year old man who now looks like he is nearing nintey.  Restaurants always seat him with my mother instead of me, and when we get the bill, they have given him a senior discount.

 

One problem is that his body produces too many histamines and he is allergic to just about everything: humidity, perfumes, chemicals, cleaning supplies, new carpeting, some plants, lacquers, make-ups, laundry soaps, shampoos.  You name it and he will shut down.  He will take one breath of air and it will be trapped, like a balloon with no opening/outlet.  His airways close up and there is no way to get the air out. 

 

He has had to leave restaurants, in the middle of meals and run out of theatres because of perfume. 

 

So, when he went to the doctor and received four more medications, the other day, because one lung was more congested than normal, it was ‘business as usual’ for us.  Yes, I watch the decline.  Do I know where that decline ends?  No.  It is not something I think about.  When he was diagnosed, the disease gave a person twenty years tops.  Medications have expanded that.  You just live each day.

 

 

I may get very frustrated, but I make sure he takes his medication and I make the doctor’s appointments, even when he does not want to go.  I watch the roof leak, and the pipes leak and the water heater that is failing and I do not harp or nag as, that is not my way.  As a caregiver of my mother and disabled husband,  I vent to you guys.  And, I thank you all for listening. 

 

There have just been too many days like this lately, and it’s hard for me to find a way to make this kind of news humorous.  Master’s Daughter would have you in stitches at this point. 

 

Another blow struck yesterday as the ophthalmologist told Roy he has Macular Degeneration.  One eye already has an expanding blurred spot, but both eyes have dead tissue in the Macular and in the one eye, the blood vessels are all straight, unlike the wavy lines they should have. There is no good prognosis here, only a slowing of the eventual blindness he will have.  Apparently, the premature aging of his body, due to the COPD, is damaging the blood vessels.  In six months the test will be repeated and we will have more of an idea how fast it is progressing.

 

On the plus side, it is not his hearing.  He has always said he would rather lose his sight than his hearing.  He loves music more than anything. 

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I do try to keep things light on this blog, but this past thirty days just sucks a big one, so I vent.

We are lucky, we have a roof (albeit a leaky one) over our heads. We have a home (although this may be the last month we have heat). Our home has water leaks, air leaks, no insulation and is small. But, it is not a cardboard box or a car. All but one person, in our house has health insurance and he just happens to be the healthiest of us, so that is good.

My husband’s twenty year battle with COPD is tearing up his body. He has been ill for three weeks, and sleeps a lot. Every time, I debate just selling my art supplies and becoming a greeter at WalMart, something happens, that tells me I am needed here at home. My mother ends up in the hospital, my husband is up for an hour a day and there are boys to pick up after school, bills to pay, a house to give up keeping clean, etc. He is adamant about me not working, and I know this is because he cannot keep up with the job I do here, although, at this point, a chimpanzee could keep up with my house cleaning. I have never lived in such a dirty house.

We live at 125% of the poverty level; now that my art income is dried up. The youngest boy does receive his own social security income, which is counted for some programs and not for others, but helps with his part of life. He is going through new testing next week for his disabilities.

And, I HATE opening the mail. I literally groan when the boys bring it in. This week was particularly scary.

It was not until the 19 year old, a year or so ago, when he had a job, was spending over $40 a month in long distance phone cards, that we all sat down and figured, he would put that $40 in cell phone service and we would get cell phones. It worked out well, until this week. I opened our bill, which is normally $100 for four cell phones, and that bill, this month, was $459.52.

They picked me up off the floor, and I ascertained that I was too far in shock to break into a quivering mass of tears, I phoned AT&T to find out what the boys did wrong, so it can be avoided in the future; after I give them back custody of their phone. At the end of finding out what all was going on with it, they offered to change my plan and write off the excess of the bill. It was one of the highlights of my year so far.

I cannot tell you how much this meant to us. When we first got AT&T, there was a misunderstanding and we were charged for things that were supposed to be shut off. AT&T wrote that off too. I cannot say enough about this company. The cellular part of it. I am not so fond of the landline part.

My relief was short lived though, as the next day I opened the South Central Indiana REMC electric and propane bill and it was $ 1,123.86. $$675.18 was for one month of propane to heat this crapy, leaky house.

I’ll let you know how that goes, after I am recovered enough to call and see what we can do with it.

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In case you are taking a break from basting, I thought I would write to say Happy Thanksgiving, just one more time this week.

Our table will not look like the one in this banner; which, by the way, I stole from someone on the net.  Since I noticed a dozen other people had “borrowed” it, I figured I was safe.  I try to only use my artwork in the banner; whether it is painting or photography, but in all the albums I have scanned so far (my project for preserving the family photos), I do not have one good one of a turkey laden table.  And, this year, ham is our centerpiece.

We are taking an easy Thanksgiving.  I am doing so much better, physically, but my husband isn’t.  He has been sleeping late, going to bed early and taking a nap.  Sometimes I think he is not getting enough oxygen either (he is going on twenty years with COPD) as he will make a point and get angry that I do not understand; but whoever is in the room, will kind of whisper to me as they leave, “I don’t get it either.” 

 So, instead of our usual Ham and Turkey, we are having Ham, in honor of mom.  Not that she is a ham or anything, she is just a lover of ham.  We have also cut out the sweet potatoes and dressing; thus eliminating a big part of the left-overs.  And, you would not believe how much less stress this meal is.  Even with the additions of guacamoli and chips, and deviled eggs.

The house is vacuumed, dusted and not spit polished.  The tree is up and a little decorated.  Lights are strung outside. 

The tree and lights are also for mom, although we thought it would be nice for Gaffer to see them when he gets home.  So, I am off to get dressed (ohhh! all kinds of images in your head now, right?), get the ham in it’s pan and then go to pick up mom.

So, don’t forget, folks, that Thanksgiving is NOT about spit polish nor the amount of food you serve.  It’s about family and friends, and appreciating them and enjoying their company.  So, save your energy, have a “bring a dish” meal, or just downsize.  You will enjoy the day more.  You will be better company for your company and it will be a day to remember for laughter and not arguments.

Have a great day.

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I absolutely, positively, hate air-conditioning.  Living with someone whose body temperature nears that of the temperature of the sun, and who has COPD and needs dried out air, you have to live with air-conditioning.  My husband’s claim to fame, aside from his renown for cooking stick-thin black fries, is that he keeps the air-conditioning up to a level that mosquitoes, frozen to the wall, become the decor.

I am usually up several hours before he is and I turn off the air and open the doors. This lets out the smell of garlic and onions that pervades the upstairs. When your body produces too many histamines, as his does, you tend to add too much of everything to whatever you are cooking. So, in the morning it is my time to breathe fresh air, without wearing a coat, when it is 80 degrees out.

I think humankind has reached a stage where our bodies are so used to the artificial temperatures created by air-conditioning that we can’t stand normal temperatures anymore.  People run from their air-conditioned cars to the overly air-conditioned restaurants. It’s not so bad in Indiana, but in Wyoming, I had to put on sweaters in restaurants and mom could barely stand it.  I  think their restaurants are attempting to make sure the food doesn’t get botulism before you eat it, so they refrigerate the entire restaurant.

Do you remember riding around town, when you were a teen, with the top down or the windows open, radio blaring? It was hot out, but hey, you were cool and who cared that other people didn’t like your music. Just try riding around now, on a hot day, with the windows down. You won’t make it twenty minutes in the heat and now the only music you hear is: Boom! Boom! Boom!

I would love to have the windows open at night too.  I love a night breeze, but this would mean breaking the windows, as most of them do not open and none of them have screens.  So, that is not an option.

The problem with the door being open in the morning, is irritating little Chihuahua has some weird fear of the open door. We think it has to do with her little body being caught in doors when she was young and sneaky and mom just couldn’t see her on the floor.  But, the dog will sit in the corner and cower when the doors are open. I figure she will get over it—

Eventually!!

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After much hassle and more money than I ever dreamt any move should cost, we closed on our house November 7, 2003.  I promise this will be the last house post for a while.

As rumor has it, the first owner lived in a trailer, while he built the basement and then moved into that. It had a low sloped peaked roof on it, and a bucket affair for a septic system.

The second owner then built the upstairs, without removing the original roof or replacing the bucket.  We have twelve inches of ceiling, roofing and flooring between the first and second floors.  It is very soundproof, except for the central stairway, and, there is no sneaking around in our house as it has the squeakiest floor on the planet.

We did, when spring broke, get a real septic system, paid for by escrow money.

When, the foundation was put in, there was no gravel added, so the side that is underground, is having wall seepage problems. Mom used to get little rivulets of water down the wall. We got a repair estimate and, ever since, I have been threatening to buy more shovels for our four strapping boy. They are strong and limber and I would not have to take the porch off if they got under there and dug it out.

We had twenty-two separate propane leaks to fix. After the fifth propane leak was found, I called the propane company out. They declared we were leak free.  That was sixteen leaks ago. One set of leaks was because the previous owner built a box around the propane line and then used a nail gun, not on the edges, but right on the middle, to nail the cover on; thus, nailing through the propane line; not once, but twice.  You never saw a disabled man move so fast in your life as when my husband pulled that cover off to check.

The plumbing is another constant battle.  Husband recently fixed the kitchen drain leak for the third time. And, the downstairs bathroom has so many leaks that our water bill has doubled and the bathroom is looking like a permanent site of remodeling.  As the last repair left a square cut out of the bathroom wall and the cut-out piece leans in place.

One leak that has been repaired previously, and he tells me it has “healed itself,” is by the water heater.  I go check and report that the bucket is overflowing again.  And, he says he thought it was fixed. Apparently, he is holding an invisible plumber hostage down there.

Then there is the infamous leak in EMT boy’s bedroom from an original leak that, when husband repaired it, it flooded my mother’s room, right above her computer.  Gaffer and I grabbed empty Rubbermaids and tried to catch the waterfall flowing above mom’s computer station. It was “Abbot and Costello meets Niagra Falls.”  I recently discovered, the hard way, that it is still leaking.  EMT boy’s room had to be dried out, yet again.

 
 

 

The house did not just come with problems either, some were created after we moved in. 
Husband had a good mind, at one time; I think that twenty years of COPD has caused oxygen deprivation, as most intelligent people do not check for propane leaks with a match.

I now have soot on the wall and a large hole from a fire he started in the wall behind the kitchen stove. He has also, when putting shrink wrap on a package (he shrinks my drawings) melted the carpet in one room.

Don’t get me wrong, I love it back home in Indiana. We have four acres and a pond (30 feet deep x 30 feet x 100 feet) and the boys ( we have four living with us now instead of one) use it all summer. Recently, they built a fire pit and use that constantly too. 

The wooded property is beautiful and, each morning I take a walk with Chihuahua, weed, pick vegetables and take pictures. The last thing I do at night is let Chihuahua out, and step outside to listen to the crickets and frogs, and spend a few minutes just staring at the stars and watching the tree tops sway.  

I think, if I lived in a tent, I would be very happy; colder maybe but dryer.

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I always clean as I cook, which lately has been non-existent. It’s not that I mind cooking. I just made the worse deal of my life with my husband once and have paid for it for twenty-five years; he cooks, I clean.  Since I always cleaned as I cooked (soapy water in the sink, wash while you are waiting for something to boil, wash and reuse measuring stuff) I had no idea how much damage he could do just cooking a frozen pizza.

 

There have been times I have gone into the kitchen and thought he must have cooked for an army and had a bomb go off while he was doing so. This is akin to him doing the dishes and using the sprayer to rinse. Half the kitchen gets a bath. So, while he cooks, flour is everywhere and door knobs and anything he touches have gook on them.  

 

This would not be so bad if he even knew what a vegetable was or how to cook anything that is not fried. In fairness, he is trying to cook healthier food. He grills a lot, including pizza (Pizza is fantastic cooked on the grill by the way, but put foil on the shelf under it so the bottom doesn’t burn).

 

We also eat ground turkey instead of hamburger a lot now too. Don’t tell the boys they are eating turkey tacos, please. But, my husband has still failed to come face to face with a green vegetable, and fried potatoes are one of his major food groups. He bakes one for me.

 

Since he has COPD and about twenty other problems, he is becoming more and more tired as he ages (and the disease is aging him fast). When we go out with mom, they automatically sit him next to mom and give them both the senior discount.

 

He does not have the energy to stay in the kitchen, or near the grill and watch progress. This results in us eating a lot of either 1. Burnt food or 2. Raw food.  And, since his main cooking is of meat, I am amazed we haven’t gotten food poisoning. Perhaps the burnt pizza crust is actually an antidote for food poisoning. The government should study that.

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