I will be leaving to go to Pennsylvania on June 6. We are leaving at night so the children will sleep most if not all the way. It's about a 7 hour drive.
I don't have to drive at all, and that's a good thing, because driving 2 and a 1/2 hours once a month really is very hard on me. I have to do this to pick up a prescription.
What worries me is that I have never stayed in anothers house since I was 13 years old, and I never visit anyone at their home. This is the only time I ever get panic attacks, so I just don't go to anyones home.
I am going to try and see how it goes, this may be easier than I think it will be because Mary and the children lived with me for way more than a year, and we are used to each other and rarely even look cross at one another.
It will be something for me to try and perhaps it will make a differance in my life. I will be traveling back and forth and hopefully I'll even be able to drive it all by myself after the first time.
I have to be here for the hospital, and the PET scansm Ct scans, the Oncologist, Rheumatologist, Surgeon, Opthalomologist and a few others.
Anyway, I can only try and hope that I can go back and forth and that my sister will take care of my dog. I am also worried about the dog-she has been with me since she was born and I hope that she will be ok.
Another consideration is getting my bills on time, don't want late payments, not only does it cost a lot, it could make the interest charges go up on all my accounts. That's a consideration.
I have decided to go ahead and order the laptop and not obsess about how to pay for it.
Tonight the pain is horrible again and so will have to grab the Kindle 2 and go rest.
I will have my own large bedroom, an area to use as my office and also, if I want, I can still have the finished family room in the basement for my tutoring.
It is also very large and it's in a closed community so there will be security. It all sounds great, just hope I can go there and not have a panic attack. That would really be rotten. But as I say Mary and I are close and maybe that will be the key.
And I'm free to come and go as I please , there and free to travel back and forth however I wish.
Monday, May 25, 2009
Wednesday, May 20, 2009
My Journey May 20
This morning I woke up on my back. This is so horrible when it happens. It took me a long time just to be able to move at all. It's like being paralyzed, but it's that the pain is so bad, I can't move or even take a good breath.
I usually only sleep on the left side, with pillows under my are, and have to position my arm head an
d neck just so and have a pillow between my knees and ankles.
So waking up on my back is a disaster.
And having to go two hours just to pick up a prescription added to the agony. I didn't see the Dr and have a appointment to see him again in August. Then I am going to appeal one more time to try and get some decent pain meds.
This is something I desperately need, He thinks that older people don't need as much pain meds. But my pain is from many sources and I NEED ENOUGH PAIN meds to at least take the edge off the pain. Or I don't think I can continue living in the agony much longer. IT's barbaric to be made to live like this.
I yearn for the release of pain, just for a few minutes. This pain has stolen my life away. It doesn't have to be this way, if only I could get enough meds to make it worth living than I would be so grateful.
So many of us get to the point where we choose to stop living because of having to live like this. There are good pain medications that would have a positive effect on my life.
Why do the DRs not listen to each patient and to the amount of pain each person has, and if that pain is from more than one or several sources, Pain like this must be treated aggressively or we will not live.
I don't know why and can't understand how the Drs think just because I am older, I don't need as much pain meds. The truth is that I am not getting enough to make it worthwhile to continue living.
My children are grown and my life is over because of the pain. The only thing left is to make it permenant. I will hang on as long as August and beg the DR to help me with the pain.
If I can't get some decent pain relief-then I will not continue living. I just am too exhausted from all the pain. I need help or I need not to be here.
No, I am NOT depressed, nor am I being anything but honest in my effort to get help with the agony. This isn't the way anyone should be forced to live.
I cannot be forced to live anyway, but I am going to keep trying for now, for as long as I can make myself go on.
I usually only sleep on the left side, with pillows under my are, and have to position my arm head an
d neck just so and have a pillow between my knees and ankles.
So waking up on my back is a disaster.
And having to go two hours just to pick up a prescription added to the agony. I didn't see the Dr and have a appointment to see him again in August. Then I am going to appeal one more time to try and get some decent pain meds.
This is something I desperately need, He thinks that older people don't need as much pain meds. But my pain is from many sources and I NEED ENOUGH PAIN meds to at least take the edge off the pain. Or I don't think I can continue living in the agony much longer. IT's barbaric to be made to live like this.
I yearn for the release of pain, just for a few minutes. This pain has stolen my life away. It doesn't have to be this way, if only I could get enough meds to make it worth living than I would be so grateful.
So many of us get to the point where we choose to stop living because of having to live like this. There are good pain medications that would have a positive effect on my life.
Why do the DRs not listen to each patient and to the amount of pain each person has, and if that pain is from more than one or several sources, Pain like this must be treated aggressively or we will not live.
I don't know why and can't understand how the Drs think just because I am older, I don't need as much pain meds. The truth is that I am not getting enough to make it worthwhile to continue living.
My children are grown and my life is over because of the pain. The only thing left is to make it permenant. I will hang on as long as August and beg the DR to help me with the pain.
If I can't get some decent pain relief-then I will not continue living. I just am too exhausted from all the pain. I need help or I need not to be here.
No, I am NOT depressed, nor am I being anything but honest in my effort to get help with the agony. This isn't the way anyone should be forced to live.
I cannot be forced to live anyway, but I am going to keep trying for now, for as long as I can make myself go on.
Friday, May 15, 2009
My Journey May 15
LivingwithPain.Aimoo.com
When the Dr said, "Older patients don't need as much pain medicine" I lost it. I just sat there and wanted to slap him.
I have RSD, Fibro, Ankylosing Spondilitis, Nerve damage due to broken neck and back (difference accidents) plus other conditions, and unfortunately they all cause pain.
Many days I have all I can do just to get up from the bed, and sometimes I have to use the motorized wheel chair just to go three steps. The pain is extreme and it never stops.
When Drs make stupid statement like that, it's just too much. Like adding insult to the pain. Many times I don't even sleep for days and when I do manage to sleep, the pain wakes me up.
Opiates are the best choice for pain control, unfortunately some people use them for recreations. We need those meds to survive. We are not addicts, not liars and we are people in pain who deserve to have that pain treated.
I don't expect to ever be pain free, that's impossible, but at least I should have enough pain relief to be able to function in some sort of way.
When the politions make "War on drugs" what they are really doing is making it harder for people who live a life of agony to get any sort of decent pain relief.
Addicts will always find a way to get what they want, but people who have to live like this are made to feel like criminals because we are in pain.
This is not right. We are only trying to get some relief and have some kind of life other than writhing in agony.
Many of us decide to stop liveing because it's just not worth the agony that we live with day by day. Horrible when this happens, but I cannot find it in my heart to blame thos who chose to stop living this horrible life of pain
w
When the Dr said, "Older patients don't need as much pain medicine" I lost it. I just sat there and wanted to slap him.
I have RSD, Fibro, Ankylosing Spondilitis, Nerve damage due to broken neck and back (difference accidents) plus other conditions, and unfortunately they all cause pain.
Many days I have all I can do just to get up from the bed, and sometimes I have to use the motorized wheel chair just to go three steps. The pain is extreme and it never stops.
When Drs make stupid statement like that, it's just too much. Like adding insult to the pain. Many times I don't even sleep for days and when I do manage to sleep, the pain wakes me up.
Opiates are the best choice for pain control, unfortunately some people use them for recreations. We need those meds to survive. We are not addicts, not liars and we are people in pain who deserve to have that pain treated.
I don't expect to ever be pain free, that's impossible, but at least I should have enough pain relief to be able to function in some sort of way.
When the politions make "War on drugs" what they are really doing is making it harder for people who live a life of agony to get any sort of decent pain relief.
Addicts will always find a way to get what they want, but people who have to live like this are made to feel like criminals because we are in pain.
This is not right. We are only trying to get some relief and have some kind of life other than writhing in agony.
Many of us decide to stop liveing because it's just not worth the agony that we live with day by day. Horrible when this happens, but I cannot find it in my heart to blame thos who chose to stop living this horrible life of pain
w
Thursday, May 14, 2009
Thursday, May 7, 2009
My Journey May 7i
Today I read the article about Paula Abdul and I was appaled by the way the magazine had written the article.
It makes people who must take pain medicnes every day in order to deal with the agony that Chronic INtractable Pain seem like nothing but low-life druggies. And that is not the case.
I have RSD, Fibro, nerve damage from a broken back and a broken back. The pain is horrible. And though I do get some pain medicine it's not enough to even help me function through the day.
I did manage to shower this morning and go to the store, but after about 5 minutes, I have to leave because the pain was so intense. I had to sit in the car and rest so that I could drive home, and the store is less than 10 minutes drive.
If you scroll all the way to the bottom there is a "contact us" there and you can leave your comments without joining or making a profile or anything.
I sent comments to 5 different news shows, The New York Times and the magazine that printed the article.
Of course, I am not expecting any answers but if you are in pain, or know someone whose life is dictated according to how the pain is at any given moment--then speak up and send off some comments.
Some years ago I wrote an editorial about what I saw happening in a nursing home. That article went nationwide and I had many offers to write from several newspapers, and even to appear in public. All of which I declined.
From that one little Letter to the Editor came the fact that now all employees working with patients in nursing homes first have to pass a three month course to be a Certified Nursing Assistant. So speak up.
Some days the pain is so intense that I can't shower, change my clothes , eat or even sleep and making plans is impossible because everything has to be according to the pain levels at the time.
The Drs are afrid to write the prescriptions that we need to be able to function at some level. We are NOT addicts, we are people in pain and we should be treated for that pain.
The medicines were researched and manufactured for the relief of pain, so why can't we get decent pain relief?
So many people who suffer this pain decide to stop living because they just can't go on. Pain is exhausting and I do understand why these people choose to stop living. Personally I will live as long as possible but it would be nice to have just a little less pain.
It makes people who must take pain medicnes every day in order to deal with the agony that Chronic INtractable Pain seem like nothing but low-life druggies. And that is not the case.
I have RSD, Fibro, nerve damage from a broken back and a broken back. The pain is horrible. And though I do get some pain medicine it's not enough to even help me function through the day.
I did manage to shower this morning and go to the store, but after about 5 minutes, I have to leave because the pain was so intense. I had to sit in the car and rest so that I could drive home, and the store is less than 10 minutes drive.
If you scroll all the way to the bottom there is a "contact us" there and you can leave your comments without joining or making a profile or anything.
I sent comments to 5 different news shows, The New York Times and the magazine that printed the article.
Of course, I am not expecting any answers but if you are in pain, or know someone whose life is dictated according to how the pain is at any given moment--then speak up and send off some comments.
Some years ago I wrote an editorial about what I saw happening in a nursing home. That article went nationwide and I had many offers to write from several newspapers, and even to appear in public. All of which I declined.
From that one little Letter to the Editor came the fact that now all employees working with patients in nursing homes first have to pass a three month course to be a Certified Nursing Assistant. So speak up.
Some days the pain is so intense that I can't shower, change my clothes , eat or even sleep and making plans is impossible because everything has to be according to the pain levels at the time.
The Drs are afrid to write the prescriptions that we need to be able to function at some level. We are NOT addicts, we are people in pain and we should be treated for that pain.
The medicines were researched and manufactured for the relief of pain, so why can't we get decent pain relief?
So many people who suffer this pain decide to stop living because they just can't go on. Pain is exhausting and I do understand why these people choose to stop living. Personally I will live as long as possible but it would be nice to have just a little less pain.
Wednesday, May 6, 2009
My Journey May 6
I asked the Dr again to increase the pain meds, or just to give me something for breakthrough pain.
He said, "Older patients don't need as much pain medicine"
Can you even believe this? Does the pain go away just because I am a little older .
About a month ago he said, " You're too young to be in pain like you say you are? Is he crazy, or what?
Of course, I got so P*****that I just wanted to slap him, or cut a hole in his head and pour in some common sense. If only I could. How can he even say such a thing?
I understand why so many pain patients decide to stop living, and can't find it in my heart to blame them. I have thought about stopping living because of the pain. Many times the pain is agony and lasts for days at a time. I will never have a time without pain, I just would like a little help to lower the intensity of the pain a little.
If the Dr could live in my body for a month, he would have so much pain meds that he would be in a coma. That isn't what I want or need, I just NEED a little more help than I am getting.
The only time I have ever had a panic attack is when I go into someone elses house. This aversion or phobia whatever it is has helped to make me isolated and the pain makes it worse.
Now I am planning to go out of state with my grand daughter and stay in her new home. It's so scary for me to even think about this. But she lived in my home for over a year and so I think that may help me. I am committed to try this and do all I can to get over this panic problem. Don't know how it is all going to work out. but I'm going to do my best.
I think that the most important thing we can do is to keep talking about the pain, how it affects our lives. what the Drs say and their attitude towards pain patients.
Keep spreading the word about how our lives are and how we have to try a cope as best we can. So many people on the internet have sent me private messages and told me that because of my speaking out that they now understand pain a little better. My hope is that spreading the word, and I belong to several support groups, is that it will help the entire medical community to understand pain. Not what they read in text books, not what they have been led to believe. But, how it really is to live a life dominated by pain.
The way everything we do or plan has to be based on How The Pain is at the time. Terrible huh?
Someone, somewhere will be helped by our continueing campain of talking about pain. The way we have to live. The agony. The exhaustion.
The being looked donw on. The stupid remarks like "You look fine to Me"
or "all you need is exercise"
We need help, and that help is understanding and DRs that are not afraid to write a prescription that can offer us a little relief.
He said, "Older patients don't need as much pain medicine"
Can you even believe this? Does the pain go away just because I am a little older .
About a month ago he said, " You're too young to be in pain like you say you are? Is he crazy, or what?
Of course, I got so P*****that I just wanted to slap him, or cut a hole in his head and pour in some common sense. If only I could. How can he even say such a thing?
I understand why so many pain patients decide to stop living, and can't find it in my heart to blame them. I have thought about stopping living because of the pain. Many times the pain is agony and lasts for days at a time. I will never have a time without pain, I just would like a little help to lower the intensity of the pain a little.
If the Dr could live in my body for a month, he would have so much pain meds that he would be in a coma. That isn't what I want or need, I just NEED a little more help than I am getting.
The only time I have ever had a panic attack is when I go into someone elses house. This aversion or phobia whatever it is has helped to make me isolated and the pain makes it worse.
Now I am planning to go out of state with my grand daughter and stay in her new home. It's so scary for me to even think about this. But she lived in my home for over a year and so I think that may help me. I am committed to try this and do all I can to get over this panic problem. Don't know how it is all going to work out. but I'm going to do my best.
I think that the most important thing we can do is to keep talking about the pain, how it affects our lives. what the Drs say and their attitude towards pain patients.
Keep spreading the word about how our lives are and how we have to try a cope as best we can. So many people on the internet have sent me private messages and told me that because of my speaking out that they now understand pain a little better. My hope is that spreading the word, and I belong to several support groups, is that it will help the entire medical community to understand pain. Not what they read in text books, not what they have been led to believe. But, how it really is to live a life dominated by pain.
The way everything we do or plan has to be based on How The Pain is at the time. Terrible huh?
Someone, somewhere will be helped by our continueing campain of talking about pain. The way we have to live. The agony. The exhaustion.
The being looked donw on. The stupid remarks like "You look fine to Me"
or "all you need is exercise"
We need help, and that help is understanding and DRs that are not afraid to write a prescription that can offer us a little relief.
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