It's been a few days since I last wrote. Not that anything has taken up all of my time. I just have not written. I guess that happens to all of us from time to time. We get into a habit of doing something and then start missing days. Maybe I just needed to have a day or two off.
We have had our two middle grand-daughters here this week while they are on Spring Break. We will be taking them back tomorrow even though it is their first day back at school. School can be made up but life missed is gone forever. They have been a wonderful joy to have around but tiring at the same time. I have a feeling that this will be a repeating pattern. We may to limit the time that we have any of the grands. I don't want that to happen but how can I prevent it?
I will be gone for a few days this week. On Tuesday I have the PEG tube put in and I doubt I will have access to post and I probably will not feel like it. I already have a script for Dilodid and when I will need it, I probably will not make much sense written or verbal. I can see it now, the girls will be recording me for blackmail purposes! No girls, that is not a suggestion. You all know that I am crazy enough without the help of good meds.
When I think about what we are about to do, I some times think that this, in a way, is me giving up. In another way, it is a way to fight what is going on. I have so many mixed emotions about doing it. That's not even taking into account the way that I react to anesthesia. I just hope that I do not wind up being admitted and having to stay for several days. I know that is in the back of both mine and G's mind.
I will try and post something on FB Tuesday afternoon as to how everything has gone and how good the meds are doing. I might have a few extra cell phones to sell by that time as well. All offers of money will be considered.
Until next time...............
Sunday, March 29, 2015
Friday, March 27, 2015
Folding Clothes Girls vs. Boys
I have been reminded this week about having girls around the house. They are easier to entertain than boys. Now before your panties get all in a wad, hear me out.
Girls are imaginative and innovative taking a simple idea and making it sooooo complicated that it might not even be recognized as the the original idea. Now stay with me and quit throwing daggers! I am not bashing girls or women............... yet. Maybe.
Take folding clothes. Girls will have to make sure they are dry first. This will involve pushing their heads nearly all the way to the back of the dryer. Have you the picture in your head? Dryer front, butts in the air, legs straight and feet on the floor.
Now one thing you must remember about dryers is that they produce static electricity. A lot of electricity. Enough to give away. Small villages in the bush in South Africa are grateful for the energy. So when the heads come out of the dryer bushel baskets cannot hide the hair. So they have to go brush their hair down. For thirty minutes. More. One day short of eternity.
Any way after the hair is back in place and they are reminded that they still have clothes to fold. They have to make sure there is a clothes basket big enough to hold the clothes. Now the question becomes plastic low walled baskets or tall rattan ones. One will result in the legs-up-kicking-head-down Yoga position. The other is just boring, unless there is snow/ice on the ground and a good slope.
Now the problem becomes where to put the folded clothes before they go back into suitcases. The table? Top of the freezer? The couch? Eyeball measurements are taken and a debate to make the UN proud takes place for the next 20 minutes, complete with simultaneous translations and Power Point Slide shows. Finally the recliner, with the smallest available area of all the previous, is chosen.
Clothes are now folded and packed away safely in the suitcases they arrived in. Total time elapsed 6 hours and 23 minutes. Not counting snack and telephone breaks.
Now boys, on the other hand, when they are told to fold the clothes, get up, after the fifth or sixth time of being reminded to do it, grab them out of the dryer and stuffed into the suitcases they came in. Sorta. Maybe. On the floor. Three feet from the suitcase. Well close enough. Elapsed time? Who cares it's done.
Now what all of this has to do with ALS I have no idea. I just needed a break from tears and I imagined you guys might need a break as well.
Besides supper is in three hours and I need to get the girls started.
We might eat on time.
Next week.
Until next time.............
Girls are imaginative and innovative taking a simple idea and making it sooooo complicated that it might not even be recognized as the the original idea. Now stay with me and quit throwing daggers! I am not bashing girls or women............... yet. Maybe.
Take folding clothes. Girls will have to make sure they are dry first. This will involve pushing their heads nearly all the way to the back of the dryer. Have you the picture in your head? Dryer front, butts in the air, legs straight and feet on the floor.
Now one thing you must remember about dryers is that they produce static electricity. A lot of electricity. Enough to give away. Small villages in the bush in South Africa are grateful for the energy. So when the heads come out of the dryer bushel baskets cannot hide the hair. So they have to go brush their hair down. For thirty minutes. More. One day short of eternity.
Any way after the hair is back in place and they are reminded that they still have clothes to fold. They have to make sure there is a clothes basket big enough to hold the clothes. Now the question becomes plastic low walled baskets or tall rattan ones. One will result in the legs-up-kicking-head-down Yoga position. The other is just boring, unless there is snow/ice on the ground and a good slope.
Now the problem becomes where to put the folded clothes before they go back into suitcases. The table? Top of the freezer? The couch? Eyeball measurements are taken and a debate to make the UN proud takes place for the next 20 minutes, complete with simultaneous translations and Power Point Slide shows. Finally the recliner, with the smallest available area of all the previous, is chosen.
Clothes are now folded and packed away safely in the suitcases they arrived in. Total time elapsed 6 hours and 23 minutes. Not counting snack and telephone breaks.
Now boys, on the other hand, when they are told to fold the clothes, get up, after the fifth or sixth time of being reminded to do it, grab them out of the dryer and stuffed into the suitcases they came in. Sorta. Maybe. On the floor. Three feet from the suitcase. Well close enough. Elapsed time? Who cares it's done.
Now what all of this has to do with ALS I have no idea. I just needed a break from tears and I imagined you guys might need a break as well.
Besides supper is in three hours and I need to get the girls started.
We might eat on time.
Next week.
Until next time.............
Wednesday, March 25, 2015
The Truly Brave
This week has been Spring Break for our grand kids and we have had two of them with us. We would take all six but for two reasons; the youngest would not leave her Mamma for that length of time and we just could not take six of them without sending back less than that number.
What is remarkable, to me at least, is that they know of my condition and what will eventually happen, and they are treating me like they always have. Except that they can't understand me all of the time, but then I have my Arkansas Hillbilly iPad. They have been kind and not making too many demands except for food. For some reason they can't go more than three hours without eating. It drives their Nana crazy because they do not gain a pound.
I am not for sure if I could face loosing my grandfather with the same grace as they are. Of course it is all in how we adults approached it with them. All my daughters sat down with their kids and explained that Papa was very sick and what would eventually happen. They understood. They accepted. They adjusted.
Which to me is amazing. Totally and completely amazing.
When I was a kid we did not discuss death, or for that matter anything to do with life like pregnancy. If a woman was pregnant my parents generation said she was expecting. We were not to ask any more questions than that. No further explanations were given. Don't dare to even ask! If some one was dying it was never mentioned. They were sick. Period. Don't ask any more questions!
My generation was not much better.
But the next generation is much better. They are not blunt about it, but very tactful about it. My girls are good at doing this kind of thing. Something that I have never been too good at, even with them. I am afraid that I was rather blunt when we told them what was going on with me. I confess that I was a coward. Scared poopless at what I thought their reaction to the news would be.
They were the brave ones. They had the courage to comfort me. Yes, that is what I said, they comforted me. Then they turned around and very quietly, very softly, very gently told their kids. I doubt I could have and glad I did not have to.
So now you know. They are the truly brave ones not me. All I have to do is deal with the disease. And try to comfort them. Then die. Simple right?
So why do I feel so confused and so much like a coward?
Until next time............
What is remarkable, to me at least, is that they know of my condition and what will eventually happen, and they are treating me like they always have. Except that they can't understand me all of the time, but then I have my Arkansas Hillbilly iPad. They have been kind and not making too many demands except for food. For some reason they can't go more than three hours without eating. It drives their Nana crazy because they do not gain a pound.
I am not for sure if I could face loosing my grandfather with the same grace as they are. Of course it is all in how we adults approached it with them. All my daughters sat down with their kids and explained that Papa was very sick and what would eventually happen. They understood. They accepted. They adjusted.
Which to me is amazing. Totally and completely amazing.
When I was a kid we did not discuss death, or for that matter anything to do with life like pregnancy. If a woman was pregnant my parents generation said she was expecting. We were not to ask any more questions than that. No further explanations were given. Don't dare to even ask! If some one was dying it was never mentioned. They were sick. Period. Don't ask any more questions!
My generation was not much better.
But the next generation is much better. They are not blunt about it, but very tactful about it. My girls are good at doing this kind of thing. Something that I have never been too good at, even with them. I am afraid that I was rather blunt when we told them what was going on with me. I confess that I was a coward. Scared poopless at what I thought their reaction to the news would be.
They were the brave ones. They had the courage to comfort me. Yes, that is what I said, they comforted me. Then they turned around and very quietly, very softly, very gently told their kids. I doubt I could have and glad I did not have to.
So now you know. They are the truly brave ones not me. All I have to do is deal with the disease. And try to comfort them. Then die. Simple right?
So why do I feel so confused and so much like a coward?
Until next time............
A Word of Thanks
I just noticed that I have had 1k+ views on my blog. I started this on 2-15 and have managed to keep up with posting to a better extent than ever before. To those who have viewed my blog and read its post and commented on it or just maybe had a thought stimulated in their brain, Thank You for stopping by.
If you like it you might want to recommend it to your friends. Or if you know of a family that is going through this as well and you think it might help them please let them know.
Until next time..............
If you like it you might want to recommend it to your friends. Or if you know of a family that is going through this as well and you think it might help them please let them know.
Until next time..............
Tuesday, March 24, 2015
My Angel
One thing that I realized this morning that I have not touched on in this blog is my Angel.
Many people may wonder why I call her Angel. Well let me tell ya! She married me 35 years ago this next November and she let me drag her from one Army post to another for 4 years while I was on active duty. Letting me do what I loved best during that time, flying helicopters so that sick and injured people had a better chance at staying alive.
She has seen me through all sicknesses and depressions. She saw me almost die from a heart attack, staying with me 24/7 for the time I was in the hospital, sleeping on a fold out twin bed next to mine. She would jump up any time I moved and moaned a little. She stayed with me through numerous heart caths and stent placements, sitting alone in the waiting room worried to death at what they would find and have to do.
She stayed with me through a surgery to correct a hiatal hernia. Again a procedure that almost took my life as I wound up in the ICU and back into surgery to try and find out why I was going septic. I cannot imagine what was going through on that one.
She stayed with me through a total of two inguinal hernia operations, and a knee surgery that saw me contract rhabdomyolysis . She got scared when I got E coli from a prostate biopsy. Not to mention having Lyme's Disease in one state and our middle daughter having the same thing in another state.
Before anyone says something about her not getting her due praise, she did this while surviving a finger that was almost severed, a total hysterectomy, removal of a lypoma the size of an egg, a total knee replacement, and the birth of three little, umm lets change that to rather large (9lb10oz, 8lb11oz, and 8lb9oz) babies, and a dislocated shoulder. Now she has problems with her back in the L4 to L5 vertibrea and facing another total knee replacement on the other knee.
She did some of these things while she went to nursing school to do something that she was very good at. She worried about the science of nursing but she studied hard and learned and impressed me with what she could do. She was 46 when she started in nursing school. An age where most nurses have moved on to supervisory positions or retired all together.
All this and more causes me to call her my Angel. I can not imagine my life without her. I cannot imagine what her life without me in it will be like. It will be different and a lot less traumatic on her that is for sure. I suspect she will try and make life easier on our daughters and grands. Knowing how loving she is, she might even take the boys to the woods..........nah she wouldn't do that. Or would she?
As far as you, the reader, I wish that you can find the one like I found mine. I hope that you also have your struggles to make you appreciate the good times that much more. And I hope for a long and happy together for both of you.
I know I have found that, more, oh such more, in my Angel.
Until next time.......................
Many people may wonder why I call her Angel. Well let me tell ya! She married me 35 years ago this next November and she let me drag her from one Army post to another for 4 years while I was on active duty. Letting me do what I loved best during that time, flying helicopters so that sick and injured people had a better chance at staying alive.
She has seen me through all sicknesses and depressions. She saw me almost die from a heart attack, staying with me 24/7 for the time I was in the hospital, sleeping on a fold out twin bed next to mine. She would jump up any time I moved and moaned a little. She stayed with me through numerous heart caths and stent placements, sitting alone in the waiting room worried to death at what they would find and have to do.
She stayed with me through a surgery to correct a hiatal hernia. Again a procedure that almost took my life as I wound up in the ICU and back into surgery to try and find out why I was going septic. I cannot imagine what was going through on that one.
She stayed with me through a total of two inguinal hernia operations, and a knee surgery that saw me contract rhabdomyolysis . She got scared when I got E coli from a prostate biopsy. Not to mention having Lyme's Disease in one state and our middle daughter having the same thing in another state.
Before anyone says something about her not getting her due praise, she did this while surviving a finger that was almost severed, a total hysterectomy, removal of a lypoma the size of an egg, a total knee replacement, and the birth of three little, umm lets change that to rather large (9lb10oz, 8lb11oz, and 8lb9oz) babies, and a dislocated shoulder. Now she has problems with her back in the L4 to L5 vertibrea and facing another total knee replacement on the other knee.
She did some of these things while she went to nursing school to do something that she was very good at. She worried about the science of nursing but she studied hard and learned and impressed me with what she could do. She was 46 when she started in nursing school. An age where most nurses have moved on to supervisory positions or retired all together.
All this and more causes me to call her my Angel. I can not imagine my life without her. I cannot imagine what her life without me in it will be like. It will be different and a lot less traumatic on her that is for sure. I suspect she will try and make life easier on our daughters and grands. Knowing how loving she is, she might even take the boys to the woods..........nah she wouldn't do that. Or would she?
As far as you, the reader, I wish that you can find the one like I found mine. I hope that you also have your struggles to make you appreciate the good times that much more. And I hope for a long and happy together for both of you.
I know I have found that, more, oh such more, in my Angel.
Until next time.......................
Monday, March 23, 2015
It Was A Beautiful Day
It was a beautiful day today. Sunshine. 70 degrees. A relaxing day with nothing more planned than being with my girls. Besides Golddean, aka my Angel, aka the wife, we have two of our grand-daughters with us over Spring Break.
It was amazing to me when we were first starting out, to know that something as beautiful as my girls were and did come from me. I suppose all parents feel that way to a certain extent. I know I was in total awe. All three of my girls were so pretty that they had to take after their mother because I sure could not have had anything to do with creating them. Luckily they all took after their Mom in the good looks department.
And now here is another generation of beautiful girls to tempt the boys and break more than a few hearts along the way. Best of all, they are from me. For if it were not for their mothers then I would not have had them to dote on and tease and send back to their mothers when the sugar high reached its peak. Seems we get them around Easter or Halloween so yeah they get candy. Lots of candy. And Papa gets his revenge.
Today though they were very happy and excited to go with us to see where my wife grew up and some other sights from around town. Then we went to Mammoth Springs. There is something totally mesmerizing about seeing a child experience something for the first time. Knowing how they will never forget the day and the happy time that it was. I know I will never foreget but I don't have as long as they do to remember and cherish the day.
I put dying aside for today and just enjoyed. Listening to the giggle of the girls in the back seat. Hearing the excitement in their voices as the ducks and geese came rushing to get the bread we threw out on the water for them. Hearing the best phrase in the world, "I love you Papa!"
Yep it was a beautiful day today.
Until next time.............
It was amazing to me when we were first starting out, to know that something as beautiful as my girls were and did come from me. I suppose all parents feel that way to a certain extent. I know I was in total awe. All three of my girls were so pretty that they had to take after their mother because I sure could not have had anything to do with creating them. Luckily they all took after their Mom in the good looks department.
And now here is another generation of beautiful girls to tempt the boys and break more than a few hearts along the way. Best of all, they are from me. For if it were not for their mothers then I would not have had them to dote on and tease and send back to their mothers when the sugar high reached its peak. Seems we get them around Easter or Halloween so yeah they get candy. Lots of candy. And Papa gets his revenge.
Today though they were very happy and excited to go with us to see where my wife grew up and some other sights from around town. Then we went to Mammoth Springs. There is something totally mesmerizing about seeing a child experience something for the first time. Knowing how they will never forget the day and the happy time that it was. I know I will never foreget but I don't have as long as they do to remember and cherish the day.
I put dying aside for today and just enjoyed. Listening to the giggle of the girls in the back seat. Hearing the excitement in their voices as the ducks and geese came rushing to get the bread we threw out on the water for them. Hearing the best phrase in the world, "I love you Papa!"
Yep it was a beautiful day today.
Until next time.............
Sunday, March 22, 2015
A Simple Memorial
I have been making arrangements and plans for my memorial and funeral. Now some of you are going to think right off that I am being narcissistic in this post. So be it. It is. I am not consistently narcissistic but this is my funeral and I will have it the way I want it. After all I am the guest of honor.
Part of what will be done is this; I will be cremated and my ashes put into a biodegradable urn and a seed from a hardwood tree inserted. Hopefully it will be a large strong tree that my grands, great-grands, and great-great-grands will be able to play under it and the elders be shaded and comforted by its shade. In a very simple way I can still provide for my family. Beside me will be a smaller tree, by some years I hope, which will be my Angel which will mean that we will be together again. Providing as best we can for our children and theirs and their grand children.
Actually all of this is beside the point that I wanted to make, but necessary for you to understand this next part. It is traditional to send flowers to a funeral. I have never really seen the since in this as in a few days to a week depending on the weather. But they die. Look ugly. Have to be thrown away. Does not last. A tree will last a lot longer. Will provide more. Will be more.
I was lost for some time trying to find a place for us to do this. In fact my Angel is the one who found out all about the bio-urn and planting of the tree. It was only after that I found another site that provided a way for others to provide a tree for planting in memory of some one who has passed. I can think of no better way for some one to say to the family, my family, we are sorry and hope that your pain goes away. Here is the web site that you can go to and order one to five hundred trees to be planted. All I ask, if you can make it a hardwood, do so, so the squirrels will have a snack once in a while.
http://thetreesremember.com/memorial-trees/
I already have two trees that will be planted when I pass; one will be me, the other will be planted this Spring after the ground thaws. Thank you sir. You know who you are and I know you will be a great man and father.
The other thing that my Angel and I have a passion for is local Humane Societies who provide for adoption of dogs and cats. We have had several dogs from places like this and they all have been great dogs. If a tree seems out of place for you to do, make a contribution in my name to the local Humane Society, not the national one but the local one. Or you can find a great dog, or cat, and adopt one who will always be happy to see you and give you unconditional love.
And that's something you won't always get from humans.
Until next time..................
Part of what will be done is this; I will be cremated and my ashes put into a biodegradable urn and a seed from a hardwood tree inserted. Hopefully it will be a large strong tree that my grands, great-grands, and great-great-grands will be able to play under it and the elders be shaded and comforted by its shade. In a very simple way I can still provide for my family. Beside me will be a smaller tree, by some years I hope, which will be my Angel which will mean that we will be together again. Providing as best we can for our children and theirs and their grand children.
Actually all of this is beside the point that I wanted to make, but necessary for you to understand this next part. It is traditional to send flowers to a funeral. I have never really seen the since in this as in a few days to a week depending on the weather. But they die. Look ugly. Have to be thrown away. Does not last. A tree will last a lot longer. Will provide more. Will be more.
I was lost for some time trying to find a place for us to do this. In fact my Angel is the one who found out all about the bio-urn and planting of the tree. It was only after that I found another site that provided a way for others to provide a tree for planting in memory of some one who has passed. I can think of no better way for some one to say to the family, my family, we are sorry and hope that your pain goes away. Here is the web site that you can go to and order one to five hundred trees to be planted. All I ask, if you can make it a hardwood, do so, so the squirrels will have a snack once in a while.
http://thetreesremember.com/memorial-trees/
I already have two trees that will be planted when I pass; one will be me, the other will be planted this Spring after the ground thaws. Thank you sir. You know who you are and I know you will be a great man and father.
The other thing that my Angel and I have a passion for is local Humane Societies who provide for adoption of dogs and cats. We have had several dogs from places like this and they all have been great dogs. If a tree seems out of place for you to do, make a contribution in my name to the local Humane Society, not the national one but the local one. Or you can find a great dog, or cat, and adopt one who will always be happy to see you and give you unconditional love.
And that's something you won't always get from humans.
Until next time..................
Friday, March 20, 2015
Thirteen
Thirteen.
Thirteen plus.
Thirteen plus, and a patch.
That's the magic number. 13. More if I feel the need.
I am, of course,talking about the number of pills that I have to take each day to stay alive.....sort of. I can probably safely drop one or ten if I want my blood pressure to go up, my blood to thicken, or my ability to NOT shoot some one is taken away.
I used to take one or two aspirin when I had a headache, which I never had at any frequency. Since 31 October 2006 that all changed. I started taking all sorts of meds because that is the protocol. Have a heart attack and they immediately start treating you for what causes the most heart attacks. High blood pressure, blocked arteries, and stress (translated as the great desire to shoot idiots and other incompetent souls who waste the oxygen they use up during the day). Some times, some times, none of those symptoms are present, but then, once you start, you're stuck. Believe me. Starting to take meds is a lot easier than it is to stop taking meds.
You start, at least I did, with the belief that if you don't take them, you will die a most horrible and painful death. Those that have never had one cannot imagine how painful they actually are. Those actors who grab their chest and rub it and then deliver their lines about how they think they are having a heart attack have never experienced that pain. Not that they are bad actors but you just can't fake what you know nothing about.
And that brings me back to ALS.
Those who have never been unable to things; roll your tongue, stick your tongue out and lick your lips, push air/liquids/food/pills around in you mouth, hold your lips tight against a glass rim while you are drinking so you don't drool, getting choked while you're drinking because it goes down your throat before you are ready for it to. These normal every day things. Have no idea what I am going through. Have no idea what it is like to NOT do these things.
And the struggle is silent and hidden. To look at me, or others who are afflicted with ALS, you would see a pretty normal guy of 57 who might show outward signs of having a stuffed up nose, but, little else. You wouldn't see the struggles he goes through every day just to eat, drink, or survive. And not shoot some one. That's an idiot. Or incompetent. Who does, so desperately, want it to be the way it was one, two, six, eight, years ago. Who struggles to swallow pills every morning, every night, and one in the afternoon, just so he can stay alive for a little bit longer.
Thirteen.
Thirteen plus.
Thirteen plus and a patch.
That's the magic number.
Until next time.............
DISCLAIMER: No I am really not wanting to shoot some one. It is a feeble, very feeble admittedly, effort to insert some humor into an otherwise very emotional writing. I think that I have made you, the reader, cry enough this week. So please do not call the cops, men in little white coats who have a funny farm, or the guys in the black SUV's who are parked just down the block to come get me. It's too late. For me. And them.
Thirteen plus.
Thirteen plus, and a patch.
That's the magic number. 13. More if I feel the need.
I am, of course,talking about the number of pills that I have to take each day to stay alive.....sort of. I can probably safely drop one or ten if I want my blood pressure to go up, my blood to thicken, or my ability to NOT shoot some one is taken away.
I used to take one or two aspirin when I had a headache, which I never had at any frequency. Since 31 October 2006 that all changed. I started taking all sorts of meds because that is the protocol. Have a heart attack and they immediately start treating you for what causes the most heart attacks. High blood pressure, blocked arteries, and stress (translated as the great desire to shoot idiots and other incompetent souls who waste the oxygen they use up during the day). Some times, some times, none of those symptoms are present, but then, once you start, you're stuck. Believe me. Starting to take meds is a lot easier than it is to stop taking meds.
You start, at least I did, with the belief that if you don't take them, you will die a most horrible and painful death. Those that have never had one cannot imagine how painful they actually are. Those actors who grab their chest and rub it and then deliver their lines about how they think they are having a heart attack have never experienced that pain. Not that they are bad actors but you just can't fake what you know nothing about.
And that brings me back to ALS.
Those who have never been unable to things; roll your tongue, stick your tongue out and lick your lips, push air/liquids/food/pills around in you mouth, hold your lips tight against a glass rim while you are drinking so you don't drool, getting choked while you're drinking because it goes down your throat before you are ready for it to. These normal every day things. Have no idea what I am going through. Have no idea what it is like to NOT do these things.
And the struggle is silent and hidden. To look at me, or others who are afflicted with ALS, you would see a pretty normal guy of 57 who might show outward signs of having a stuffed up nose, but, little else. You wouldn't see the struggles he goes through every day just to eat, drink, or survive. And not shoot some one. That's an idiot. Or incompetent. Who does, so desperately, want it to be the way it was one, two, six, eight, years ago. Who struggles to swallow pills every morning, every night, and one in the afternoon, just so he can stay alive for a little bit longer.
Thirteen.
Thirteen plus.
Thirteen plus and a patch.
That's the magic number.
Until next time.............
DISCLAIMER: No I am really not wanting to shoot some one. It is a feeble, very feeble admittedly, effort to insert some humor into an otherwise very emotional writing. I think that I have made you, the reader, cry enough this week. So please do not call the cops, men in little white coats who have a funny farm, or the guys in the black SUV's who are parked just down the block to come get me. It's too late. For me. And them.
Wednesday, March 18, 2015
Sex
I have either irretrievably grabbed your attention or completely embarrassed you.
Don't worry this is not a porno post. I am going to discuss sex and how ALS is affecting it so far for me. I promise not to be graphic, but this is a part of life and can be affected by ALS. Am I an expert? Nope. I have not spent years studying the sex lives of ALS patients. Maybe Masters and Johnson need to do a study of that group or at least of terminal patients. Maybe they have and I just don't know it.
Many things are put into a different perspective when you find out you are dying. That job you have secretly hated for the past so many years is suddenly somewhere else besides the top of the priorities list you have. Family, and being with family, takes on a whole new importance. Tolerance of incompetence is lowered. Time, as in how much time is left, is more important. How you make use of time is more important.
Sex. Well sex is different. It is physical and mental. Recreational and procreational. Nonexistent? No. Different? Most assuredly.
I appreciate the 'innocent' sex much more than before. Telling Her, the one I chose to love all of my life until death do us part, that I love her several times a day and in several different ways is stimulating to both of us. Being able to reach over and touch her arm or shoulder in a caress. Having Her kiss me. Me pressing my lips to Hers or Her hand. Hugging Her from behind. Holding hands watching TV or walking down the street. Being goofy and laughing at things other people would have not thought so funny. Snuggling in bed when the warmth of each other is felt.
These are the 'innocent' sex we all know. And we take for granted. I already miss kissing the way I used to do. I am sure that one day I will miss the intimate sex we once had. The one thing that I am sure that will outlast all the other is the 'innocent' sex of touch and word. To my dying day I will find a way to tell Her I love Her, to caress Her arm and hold Her hand, to look in her eyes and laugh at the joke no one else gets. For this is truly love. Which leads to sex. Which is all the softer and more intimate, some how now, than when we were young. And Healthy.
Until next time.....................
Don't worry this is not a porno post. I am going to discuss sex and how ALS is affecting it so far for me. I promise not to be graphic, but this is a part of life and can be affected by ALS. Am I an expert? Nope. I have not spent years studying the sex lives of ALS patients. Maybe Masters and Johnson need to do a study of that group or at least of terminal patients. Maybe they have and I just don't know it.
Many things are put into a different perspective when you find out you are dying. That job you have secretly hated for the past so many years is suddenly somewhere else besides the top of the priorities list you have. Family, and being with family, takes on a whole new importance. Tolerance of incompetence is lowered. Time, as in how much time is left, is more important. How you make use of time is more important.
Sex. Well sex is different. It is physical and mental. Recreational and procreational. Nonexistent? No. Different? Most assuredly.
I appreciate the 'innocent' sex much more than before. Telling Her, the one I chose to love all of my life until death do us part, that I love her several times a day and in several different ways is stimulating to both of us. Being able to reach over and touch her arm or shoulder in a caress. Having Her kiss me. Me pressing my lips to Hers or Her hand. Hugging Her from behind. Holding hands watching TV or walking down the street. Being goofy and laughing at things other people would have not thought so funny. Snuggling in bed when the warmth of each other is felt.
These are the 'innocent' sex we all know. And we take for granted. I already miss kissing the way I used to do. I am sure that one day I will miss the intimate sex we once had. The one thing that I am sure that will outlast all the other is the 'innocent' sex of touch and word. To my dying day I will find a way to tell Her I love Her, to caress Her arm and hold Her hand, to look in her eyes and laugh at the joke no one else gets. For this is truly love. Which leads to sex. Which is all the softer and more intimate, some how now, than when we were young. And Healthy.
Until next time.....................
Monday, March 16, 2015
More Ramblings
I had said in a previous post that I was getting another list of just random thoughts going. Well here it is. Just remember that some are tongue in cheek and not entirely serious in nature. Hope you enjoy.
I don't mind you commenting on a specific post on here. In fact I enjoy the feed back, so post away!
How come people think that because I cannot speak clearly that they have to talk louder or write things down for me to understand? Was at the post office to pick up a package today and the clerk asked if I could understand her after I used my Arkansas Hillbilly iPad to write a note to her.
Arkansas Hillbilly iPad: Dry erase board with pen. Laugh all you want it works.
Why does the post office have only two Handicap parking places with one that you have to do a three point turn just to get into?
I am convinced there is a STUPID gene and we need scientist to locate it and cut it out of the DNA chain.
I have never had a doctor tell me to gain weight and not loose any more until I went to the ALS Clinic last week. I am down to ten pounds more than when I married my Angel.
I am amazed at the people who never cared for me before, who find out that I have ALS, become all loving and sympathetic. I might expand on that one later on. Don't know if I want to go there or not.
The more that I have a positive attitude about my situation, the more people are are amazed by that.
It is OKAY to use the words die, dying, terminal, or any others to refer to the ultimate outcome of this disease. It is a fact. It will not upset me. I am at peace with dying.
I have good days and bad days. I cherish both kinds. Each one means another day with the ones I love and the friends that I have made on here.
Not for sure that I have covered everything that I wanted to or not, but for now this is enough. Remember you can comment, as to whether you like something or not.
Until next time.............
I don't mind you commenting on a specific post on here. In fact I enjoy the feed back, so post away!
How come people think that because I cannot speak clearly that they have to talk louder or write things down for me to understand? Was at the post office to pick up a package today and the clerk asked if I could understand her after I used my Arkansas Hillbilly iPad to write a note to her.
Arkansas Hillbilly iPad: Dry erase board with pen. Laugh all you want it works.
Why does the post office have only two Handicap parking places with one that you have to do a three point turn just to get into?
I am convinced there is a STUPID gene and we need scientist to locate it and cut it out of the DNA chain.
I have never had a doctor tell me to gain weight and not loose any more until I went to the ALS Clinic last week. I am down to ten pounds more than when I married my Angel.
I am amazed at the people who never cared for me before, who find out that I have ALS, become all loving and sympathetic. I might expand on that one later on. Don't know if I want to go there or not.
The more that I have a positive attitude about my situation, the more people are are amazed by that.
It is OKAY to use the words die, dying, terminal, or any others to refer to the ultimate outcome of this disease. It is a fact. It will not upset me. I am at peace with dying.
I have good days and bad days. I cherish both kinds. Each one means another day with the ones I love and the friends that I have made on here.
Not for sure that I have covered everything that I wanted to or not, but for now this is enough. Remember you can comment, as to whether you like something or not.
Until next time.............
Saturday, March 14, 2015
Decisions
I have found that I am making more and more decisions lately about both short and long term events. But those terms, short and long have a whole new meaning as to length.
For instance, I went out today with my beautiful wife (see how I worked that in there?) and bought some burlap and cammo fabric to make some hunting equipment/clothing that I have been wanting but can't find quite what I am looking for in stores that don't cost more than than what a pearl diver in Tripoli makes in a year.
The other is decisions concerning funerals and family reunions. The former is pretty well set in wet clay and only some refinements have to be made, like the date and time. The later is a concern that I have been trying for several years to get done. You see my family, like other families out there, seems to only congregate when one of our parents' generation passes. Now that I am sure to pass before the rest of them, I don't want to be the cause of a reunion, especially when I can't sit around and hear them talk and laugh and enjoy themselves.
The first situation has only about 62 days to be completed before squirrel season opens up again. I'd like to be able to use the ghillie suit through the season coming up and maybe next year's as well. The second situation is, well any where from the first weekend in August to 2 years from now. (The doc says that I have 3 to 5 years from onset.) It depends on if we can pull off this reunion or not.
It may seem strange to some of you who read this to think of a funeral as a family reunion. It is a sad and trying time for those involved to be sure. My family, however, finds relief in remembering the funny things that bring out smiles if not laughter to those gathered. That is just how we are. And that is how I want mine to be. I believe that a funeral should be a time to celebrate the life of the guest of honor. Since that will be me in this case I get to set the rules before hand. I have the advantage of most people because I know the end of my life is coming up. In fact I am a little disappointed that I will be missing the whole thing.
A funeral is the only event at which the guest of honor has no choice but to attend. In this case I wouldn't mind skipping it at all.
Until next time....................
For instance, I went out today with my beautiful wife (see how I worked that in there?) and bought some burlap and cammo fabric to make some hunting equipment/clothing that I have been wanting but can't find quite what I am looking for in stores that don't cost more than than what a pearl diver in Tripoli makes in a year.
The other is decisions concerning funerals and family reunions. The former is pretty well set in wet clay and only some refinements have to be made, like the date and time. The later is a concern that I have been trying for several years to get done. You see my family, like other families out there, seems to only congregate when one of our parents' generation passes. Now that I am sure to pass before the rest of them, I don't want to be the cause of a reunion, especially when I can't sit around and hear them talk and laugh and enjoy themselves.
The first situation has only about 62 days to be completed before squirrel season opens up again. I'd like to be able to use the ghillie suit through the season coming up and maybe next year's as well. The second situation is, well any where from the first weekend in August to 2 years from now. (The doc says that I have 3 to 5 years from onset.) It depends on if we can pull off this reunion or not.
It may seem strange to some of you who read this to think of a funeral as a family reunion. It is a sad and trying time for those involved to be sure. My family, however, finds relief in remembering the funny things that bring out smiles if not laughter to those gathered. That is just how we are. And that is how I want mine to be. I believe that a funeral should be a time to celebrate the life of the guest of honor. Since that will be me in this case I get to set the rules before hand. I have the advantage of most people because I know the end of my life is coming up. In fact I am a little disappointed that I will be missing the whole thing.
A funeral is the only event at which the guest of honor has no choice but to attend. In this case I wouldn't mind skipping it at all.
Until next time....................
Friday, March 13, 2015
On Being Invisible
When I was a kid I wanted to be invisible.
I just wanted to be in the room with people and not be seen to see what they were talking about and how they acted without me being around. Kinda like a fly on the wall. I didn't want to be a fly because all us kids were experts with a fly swatter, and being a greasy spot on the wall was not something I wanted to be.
There are times even now that I wish I was invisible. Like having a coughing fit, or choking on food, or having to use my finger to move food around in my mouth so that I can chew it and not gag. Most people are polite and try not to look. Then again, it is the car wreck syndrome that takes over. You don't want to look but you do look. The more you look the more you want to look.
The other thing is this; the disabilities that I have are invisible. Looking at me you would not know anything is wrong. I don't have any visible deformities, no artificial limbs, no walker to use nor a cane. I don't limp, I don't lean one way or the other. I don't carry a white cane.
What I do have are three stents from the heart attack eight and a half years ago. What I do have is ALS that affects my speech and swallowing. Until I open my mouth to talk you would not guess that there is anything wrong and that leads to problems, and misunderstandings.
I take a dry erase board with me wherever I go now days. People get a laugh out of it being labeled Arkansas Hillbilly iPad. Which is fine because that brakes the ice and people tend to relax. The first thing many want to do is talk LOUDER, as if I won't understand them if they don't, just because I can't talk. It is strange and sometimes funny. All you can do is shake your head mentally and go with it.
There are still times I still want to be invisible, but now it is for a far different reason.
Until next time...............
I just wanted to be in the room with people and not be seen to see what they were talking about and how they acted without me being around. Kinda like a fly on the wall. I didn't want to be a fly because all us kids were experts with a fly swatter, and being a greasy spot on the wall was not something I wanted to be.
There are times even now that I wish I was invisible. Like having a coughing fit, or choking on food, or having to use my finger to move food around in my mouth so that I can chew it and not gag. Most people are polite and try not to look. Then again, it is the car wreck syndrome that takes over. You don't want to look but you do look. The more you look the more you want to look.
The other thing is this; the disabilities that I have are invisible. Looking at me you would not know anything is wrong. I don't have any visible deformities, no artificial limbs, no walker to use nor a cane. I don't limp, I don't lean one way or the other. I don't carry a white cane.
What I do have are three stents from the heart attack eight and a half years ago. What I do have is ALS that affects my speech and swallowing. Until I open my mouth to talk you would not guess that there is anything wrong and that leads to problems, and misunderstandings.
I take a dry erase board with me wherever I go now days. People get a laugh out of it being labeled Arkansas Hillbilly iPad. Which is fine because that brakes the ice and people tend to relax. The first thing many want to do is talk LOUDER, as if I won't understand them if they don't, just because I can't talk. It is strange and sometimes funny. All you can do is shake your head mentally and go with it.
There are still times I still want to be invisible, but now it is for a far different reason.
Until next time...............
Thursday, March 12, 2015
Back At Home
As many of you might have realized I have been out of touch with the computer for the last few days. I have been at my middle daughter's house over the weekend and through yesterday. It was a wonderful visit with them as always, and it sure was hard to leave, but soon, hopefully we will be down there living next to them.
I went to the neurological doctor on Monday. The people at the UAMS ALS Clinic are awesome! We, the wife, daughter, and I, got there at about 7:30 and did not leave again until about 12:30. During that whole time we didn't have to wait on anyone for more than 10 minutes at a time. The doc, her nurse, social worker, speech therapist, dietitian, pulmonary specialist, and the head of the Arkansas MDA chapter all were very gracious and understanding. I could not have asked for better treatment any where at any time.
Doc did confirm that the prognosis is 3 to 5 years from onset. Seems a short time, but I am sure that time will drag nearer to the time of my leaving. Again I am at peace with all of this, I just wouldn't want to wish this on anyone else.
One of the ironic things we did was pay off my funeral expenses............. on my birthday. Yeah, I made fun of that. Couldn't resist. It is a relief though to know that the funeral expenses are paid in full and Golddean will not have to worry about that when the time comes.
One thing more, thank you to all that have said prayers, kept good thoughts, and sent well wishes. You don't realize how much that really helps to the one receiving it.
Until next time..................
I went to the neurological doctor on Monday. The people at the UAMS ALS Clinic are awesome! We, the wife, daughter, and I, got there at about 7:30 and did not leave again until about 12:30. During that whole time we didn't have to wait on anyone for more than 10 minutes at a time. The doc, her nurse, social worker, speech therapist, dietitian, pulmonary specialist, and the head of the Arkansas MDA chapter all were very gracious and understanding. I could not have asked for better treatment any where at any time.
Doc did confirm that the prognosis is 3 to 5 years from onset. Seems a short time, but I am sure that time will drag nearer to the time of my leaving. Again I am at peace with all of this, I just wouldn't want to wish this on anyone else.
One of the ironic things we did was pay off my funeral expenses............. on my birthday. Yeah, I made fun of that. Couldn't resist. It is a relief though to know that the funeral expenses are paid in full and Golddean will not have to worry about that when the time comes.
One thing more, thank you to all that have said prayers, kept good thoughts, and sent well wishes. You don't realize how much that really helps to the one receiving it.
Until next time..................
Friday, March 6, 2015
I Hope It's True
I hope it is true that all dogs go to heaven for it would be a far drearier place if they did not.
I just heard from an online friend of mine. His companion in both home and field for the last 13 or so years has passed. You might not be a dog lover or a pet lover at all, but I can tell you that loosing a pet is hard. As hard as loosing a human companion.
This is especially hard on my friend. You see he lost both his wife and son in one year. The only one he had left for a while was his Pearl. She could sense when it was the hardest on him and she would try and comfort him by laying her head on his leg, or nudging him towards the door for a walk if it was not hunting season.
She would spend hours in a blind or walking a field for water fowl or pheasants. Never a complaint nor a whimper. Standing close and alert when the geese flew into range waiting for one to hit the ground. Working a field with her nose tuned to the smell of a pheasant rooster in hiding. Retrieving the ones she finds and thinking all the time, I would imagine, that it was all a wondrous adventure and game to play.
Now Pearl is gone and there is another hole in a heart tonight. No amount of sympathy will heal that hole for a long time to come. For now there is one less in the pack and that place will never be filled by another. It can't be.
As a wise man said, "If there are no dogs in heaven, then I want to go where they are." I believe Will Rodgers had that nailed.
Until next time..................
I just heard from an online friend of mine. His companion in both home and field for the last 13 or so years has passed. You might not be a dog lover or a pet lover at all, but I can tell you that loosing a pet is hard. As hard as loosing a human companion.
This is especially hard on my friend. You see he lost both his wife and son in one year. The only one he had left for a while was his Pearl. She could sense when it was the hardest on him and she would try and comfort him by laying her head on his leg, or nudging him towards the door for a walk if it was not hunting season.
She would spend hours in a blind or walking a field for water fowl or pheasants. Never a complaint nor a whimper. Standing close and alert when the geese flew into range waiting for one to hit the ground. Working a field with her nose tuned to the smell of a pheasant rooster in hiding. Retrieving the ones she finds and thinking all the time, I would imagine, that it was all a wondrous adventure and game to play.
Now Pearl is gone and there is another hole in a heart tonight. No amount of sympathy will heal that hole for a long time to come. For now there is one less in the pack and that place will never be filled by another. It can't be.
As a wise man said, "If there are no dogs in heaven, then I want to go where they are." I believe Will Rodgers had that nailed.
Until next time..................
Thursday, March 5, 2015
Good News
My wife has been trying for about 2 years now to get her disability because of back issues. Well yesterday she got her disability check and will start receiving her monthly checks in April. This is such a relief for both of us.
We went shopping for things that we have been putting off because we just could not afford them on just my check each month. Funny thing was I kept looking at the basket as it got fuller and fuller and I kept thinking that we were spending too much. I guess that is the mentality I have had to keep for so long it has become more or less second nature to me. Now I can relax a little more and enjoy spending a little on ourselves.
I have a lot of thoughts backing up again and not all will do for a blog by themselves so look for another Rambling Thoughts blog in the near future. An update on how things went with the docs at UAMS will be posted next week sometime. I can only hope we get answers for some of the questions we have.
Until next time...............
We went shopping for things that we have been putting off because we just could not afford them on just my check each month. Funny thing was I kept looking at the basket as it got fuller and fuller and I kept thinking that we were spending too much. I guess that is the mentality I have had to keep for so long it has become more or less second nature to me. Now I can relax a little more and enjoy spending a little on ourselves.
I have a lot of thoughts backing up again and not all will do for a blog by themselves so look for another Rambling Thoughts blog in the near future. An update on how things went with the docs at UAMS will be posted next week sometime. I can only hope we get answers for some of the questions we have.
Until next time...............
Tuesday, March 3, 2015
Not a Lot To Say
I almost did not write today. I have been out and about and paying bills and picking up meds. And hurting.
Seems that the fat pad for my sacroiliac is inflamed. So another pill for pain (good!) and another one to help with the excess saliva. I cannot say how much it means that I have insurance now. If I did not, meds per month alone would be about the same as my disability payments are. As it is I can afford to have my pills and a warm dry place to sleep every night.
I go this next Monday to the ALS Clinic for the first time. I hope to know a lot more about what is going to go on and probably be coming home with a lot more or different meds to help to get through each day.
If you are following this blog on a daily basis, I will let you know now that I will be away from computers internet etc. for a few days starting on Saturday. Nothing to worry about. Will be with family and docs and docs and docs. I will be back online by Thursday of next week if not sooner.
I know this is some what disjointed and short. Chalk it up to the meds and physical state right now.
In the meantime stay warm and safe if you are in the path of the winter weather.
Until next time..............
Seems that the fat pad for my sacroiliac is inflamed. So another pill for pain (good!) and another one to help with the excess saliva. I cannot say how much it means that I have insurance now. If I did not, meds per month alone would be about the same as my disability payments are. As it is I can afford to have my pills and a warm dry place to sleep every night.
I go this next Monday to the ALS Clinic for the first time. I hope to know a lot more about what is going to go on and probably be coming home with a lot more or different meds to help to get through each day.
If you are following this blog on a daily basis, I will let you know now that I will be away from computers internet etc. for a few days starting on Saturday. Nothing to worry about. Will be with family and docs and docs and docs. I will be back online by Thursday of next week if not sooner.
I know this is some what disjointed and short. Chalk it up to the meds and physical state right now.
In the meantime stay warm and safe if you are in the path of the winter weather.
Until next time..............
Sunday, March 1, 2015
Magical Washing Machines
Just got back a little bit ago from the laundry mat where I was washing two comforters. Now any one who has a pet knows that sooner or latter they will figure out how to get up on the bed whether you are in it or not. People will tell you also that no matter how healthy and well fed, meaning how nutritious their food is, they will get sick. Just before you go to bed. When the temp will be in lower teens. Covered up because they don't want to get in trouble. Maybe mom and dad won't see it. On a white comforter.
Not for sure which one did it but one of our dogs did just that. Once about three days ago and again last night. Really bad when you think you will be climbing into bed and drift off to sleep. Then your foot, thigh, hand, arm or other body part finds that wet, slimy, clammy, cold wet spot. It's enough to make you do that little dance where you feet go up and down in rhythm but you don't move than an inch from where you started dancing. Did I mention it was a really COLD wet spot? Off with the sheets and blankets and comforter. On with the clean sheets. Maybe a shower, certainly a wash clothe sponge bath. Back to bed.
Because we do not have anything but a family sized washing machine here at the house. I thought it easier to take it to the laundry mat down the road not quite two miles and at least wash them there. They have these large machines that are front loaders with the window in the door. Long and short of it I got everything in and started. I found myself being mesmerized by the machine doing its job. Yeah I am easily entertained but that is something for another blog.
It occurred to me that the machine tumbling the items around and around was wearing down the rough edges, so to speak, of the dirt on the quilts. Saturating the comforter with water and detergent and making it clean again. Spinning the dirt and debris off to the drain and then rinsing again.
Wouldn't that be great with all of my physical problems right now? Just put me in a machine and let it tumble me around and around until the rough edges that is ALS is rinsed away and I can go back to the way it was. The way it should be. Were that there was such a machine and we wipe out cancer, ALS, and every other deadly disease! There is not one, unfortunately, at least not yet.
As for me? I don't know that I would want that, but I sure as hell would put my $4 in quarters in and go for the ride just in case.
Until next time.............
Not for sure which one did it but one of our dogs did just that. Once about three days ago and again last night. Really bad when you think you will be climbing into bed and drift off to sleep. Then your foot, thigh, hand, arm or other body part finds that wet, slimy, clammy, cold wet spot. It's enough to make you do that little dance where you feet go up and down in rhythm but you don't move than an inch from where you started dancing. Did I mention it was a really COLD wet spot? Off with the sheets and blankets and comforter. On with the clean sheets. Maybe a shower, certainly a wash clothe sponge bath. Back to bed.
Because we do not have anything but a family sized washing machine here at the house. I thought it easier to take it to the laundry mat down the road not quite two miles and at least wash them there. They have these large machines that are front loaders with the window in the door. Long and short of it I got everything in and started. I found myself being mesmerized by the machine doing its job. Yeah I am easily entertained but that is something for another blog.
It occurred to me that the machine tumbling the items around and around was wearing down the rough edges, so to speak, of the dirt on the quilts. Saturating the comforter with water and detergent and making it clean again. Spinning the dirt and debris off to the drain and then rinsing again.
Wouldn't that be great with all of my physical problems right now? Just put me in a machine and let it tumble me around and around until the rough edges that is ALS is rinsed away and I can go back to the way it was. The way it should be. Were that there was such a machine and we wipe out cancer, ALS, and every other deadly disease! There is not one, unfortunately, at least not yet.
As for me? I don't know that I would want that, but I sure as hell would put my $4 in quarters in and go for the ride just in case.
Until next time.............
Subscribe to:
Posts (Atom)