I am not one to talk politics, I feel it is an intensely personal and private thing, but since we are approaching an important presidential election, and so many of the issues are dear to all of us (health care anyone?!!) I wanted to talk about voting. Awhile back I received an e-mail about women and the right to vote. In it was discussed a lot of what the early suffragists went through for us to be given this right. It also talked about the movie 'Iron Jawed Angels', put out by HBO, which chronicled the suffragettes struggles. I am ashamed to say, I wasn't aware of any of the facts I read about. I wasn't taught this history in school. I hope that by now this has changed, but I fear it probably hasn't. I haven't had the chance to see 'Iron Jawed Angels', although I am Netflixing it to see before the election. I can't speak for the accuracy of everything contained in the e-mail and I can't credit the author, because there was no name given. I would like to provide some of the substance of the e-mail here, in the hopes that if you, like me, were unaware of what these women went through for us to gain the right to vote, that learning just a little more about them might make you appreciate this right even more! If you are aware of this part of history, please take the time before the election to get the word out to other women who might not be aware, we owe these women at least that much! If anyone has knowledge of the author of the e-mail, please let me and I will gladly publish that information here as well. In the meantime, get a copy of 'Iron Jawed Angels' and learn something about American history you might not have known!
The original e-mail went as follows:
"WHY WOMEN SHOULD VOTE"
"This is the story of our Grandmothers and Great-grandmothers; they lived only 90 years ago. Remember, it was not until 1920 that women were granted the right to go to the polls and vote. The women were innocent and defenseless, but they were jailed nonetheless for picketing the White House, carrying signs asking for the vote. And by the end of the night, they were barely alive. Forty prison guards wielding clubs and their Warden's blessing, went on a rampage against the 33 women wrongly convicted of 'obstructing sidewalk traffic'. They beat Lucy Burns, chained her hands to the cell bars above her head and left her hanging for the night, bleeding and gasping for air. They hurled Dora Lewis into a dark cell, smashed her head against an iron bed and knocked her out cold. Her cellmate, Alice Cosu, thought Lewis was dead and suffered a heart attack. Additional affidavits describe the guards grabbing, dragging, beating, choking, slamming, twisting and kicking the women. Thus unfolded the 'Night of Terror' on November 15, 1917, when the warden at the Occoquan Workhouse in Virginia ordered his guards to teach a lesson to the suffragists imprisoned there because they dared to picket Woodrow Wilson's White House for the right to vote. For weeks, the women's only water came from an open pail. Their food--all of it colorless slop-was infested with worms. When one of the leaders, Alice Paul, embarked on a hunger strike, they tied her to a chair, forced a tube down her throat and poured liquid into her until she vomited. She was tortured this way for weeks until word was smuggled out to the press."
The author goes on to speak about how she was unaware of this history and the need to make others aware:
"So, refresh my memory. Some women won't vote this year because -why, exactly? We have carpool duties? We have to get to work? Our vote doesn't matter? It's raining?
Last week I went to a sparsely attended screening of HBO's new movie 'Iron Jawed Angels'. It is a graphic depiction of the battle these women waged so that I could pull the curtain at the polling booth and have my say. I am ashamed to say I needed the reminder.
All these years later, voter registration is still my passion. But the actual act of voting had become less personal for me, more rote. Frankly, voting often felt more like an obligation than a privilege. Sometimes it was inconvenient.
My friend Wendy, who is my age and studied women's history saw the HBO movie too. When she stopped by my desk to talk about it, she looked angry. She was--with herself. 'One thought kept coming back to me as I watched that movie', she said. 'What would those women think of the way I use, or don't use my right to vote? All of us take it for granted now, not just younger women, but those of us who did seek to learn.' 'The right to vote', she said had become valuable to her 'all over again'.
HBO released the movie on video and DVD. I wish all history, social studies and government teachers would include the movie in their curriculum. I want it shown on Bunco night too, and anywhere else women gather. I realize this isn't our usual idea of socializing, but we are not voting in the numbers that we should be, and I think a little shock therapy is in order.
It is jarring to watch Woodrow Wilson and his cronies try to persuade a psychiatrist to call Alice Paul insane so that she could be permanently institutionalized. And it is inspiring to see the doctor refuse. Alice Paul was strong, he said, and brave. That didn't make her crazy. The doctor admonished the men: 'Courage in women is often mistaken for insanity'.
Please, if you are so inclined, pass this on to to all the women who you know. We need to get out and vote and use this right that was fought so hard for by these very courageous women. Whether you vote democratic, republican or independent party--remember to vote. History is being made."
That ends the text of the e-mail. There were pictures of some of the suffragists included that I was unable to bring into the post. Again, I can't take credit for, or guarantee the complete accuracy of the e-mail text, but it is something to think about this election season. Please make your voice heard!
Friday, October 17, 2008
Thursday, October 16, 2008
Still Ill
Sorry for the delay in posting. I am continuing to battle medical issues and just haven't been posting as I normally do. I am hopeful to get a "real" post up tomorrow. I am awaiting word from an infectious disease doctor I was sent to this week. I am continuing to run fevers and feel awful. Hopefully, it won't turn out to be anything too serious. She took so much blood I am still a quart low!
I appreciate the patience of those who have been coming and commenting regularly. I know most of you have your own illness, or that of a loved one you deal with, and you understand bad times like these.
I appreciate the patience of those who have been coming and commenting regularly. I know most of you have your own illness, or that of a loved one you deal with, and you understand bad times like these.
Friday, October 10, 2008
Fighting Illness and the "Adrenal Factor"
This past week I have been pretty sick with a sinus infection and some sort of virus. I'm not surprised given the stresses of the move, both physical and emotional, that my body would react by lowering its defenses and allowing a bug to take over. What is particularly annoying to me is that due to my adrenal insufficiency, it is harder for me to fight off infections or viruses, and I have to be extremely careful about maintaining my cortisol level, which affects my electrolytes, and giving my body the rest and nutrition it needs to heal.
Another thing I have to do is increase the daily amount of hydrocortisone I take, bumping up to what is called a "stress dose". I have to do this whenever I am under physical or emotional stress, to prevent severe, life-threatening complications from a drop in sodium, potassium or other important electrolytes. Of course the extra steriods produce their own set of problems, but it is all part of living with an adrenal insufficiency. Unfortunately, since the condition is so rare, there are even doctors who don't seem to get the importance of it. Luckily, I have a good endocrinologist as well as internist, who monitor me closely, but I have had problems even during past hospitalizations with getting the proper doses of medications for my situation.
I have learned to take things like this in stride, but it is another reminder that I have a body that acts differently than most, at times the fatigue makes it hard to get out of bed and the nausea and diarrhea contribute to the chance of dehydration. I am grateful that I became aware of my problem before I went into adrenal failure or shock, but I wish there were more known about this condition, and that more doctors understood the importance of keeping track of it along with my the many other things I deal with, especially when they seem minor, like a slight infection or a virus, which for someone else is usually the least of their worries.
Another thing I have to do is increase the daily amount of hydrocortisone I take, bumping up to what is called a "stress dose". I have to do this whenever I am under physical or emotional stress, to prevent severe, life-threatening complications from a drop in sodium, potassium or other important electrolytes. Of course the extra steriods produce their own set of problems, but it is all part of living with an adrenal insufficiency. Unfortunately, since the condition is so rare, there are even doctors who don't seem to get the importance of it. Luckily, I have a good endocrinologist as well as internist, who monitor me closely, but I have had problems even during past hospitalizations with getting the proper doses of medications for my situation.
I have learned to take things like this in stride, but it is another reminder that I have a body that acts differently than most, at times the fatigue makes it hard to get out of bed and the nausea and diarrhea contribute to the chance of dehydration. I am grateful that I became aware of my problem before I went into adrenal failure or shock, but I wish there were more known about this condition, and that more doctors understood the importance of keeping track of it along with my the many other things I deal with, especially when they seem minor, like a slight infection or a virus, which for someone else is usually the least of their worries.
Thursday, October 9, 2008
Virtual Book Tour - Rosalind Joffe
I am SO excited to a part of the virtual book tour for Rosalind Joffe's latest book, "Women, Work and Autoimmune Disease-Keep Working Girlfriend". Rosalind is a certified coach who has helped many people with chronic illness to stay employed, re-enter the workforce or find new work that suits their needs due to illness. Because Rosalind has been dealing with chronic illness herself for over thirty years, she knows and understands the unique impact these sort of illnesses place on us in the workplace, at home, with friends and family and in all aspects of our lives. Rosalind suffers from multiple sclerosis and ulcerative colitis. She lives with many of the same symptoms and issues that we do, including pain and fatigue, and she knows how to stand up for herself and others in the workplace.
I am honored that Rosalind will be doing a guest blog post right here on November 13, 2008. I have the opportunity to give her a topic to write on, and while I have some ideas of my own in mind, I would love to get feedback from you as to what types of things you would like to see addressed in her post. Remember, the book is about working with illness, so any questions that you might have along those lines would be appropriate. Please comment as soon as possible so that I have a chance to see what you are thinking before I contact Rosalind with a topic. This is a wonderful opportunity to get answers from a top authority in the field, and more importantly to some of us, someone who actually understands what it is like to have these types of illnesses and still remain working.
Considering the economic climate we are currently in, we are all in need of extra income - healthy or sick, but it has always been a struggle for many of us who are chronically ill to remain employed. This book could be the answer you have been looking for!
Tuesday, October 7, 2008
Fibromyalgia AWARE Magazine now available in CVS Stores
As mentioned in my biographical information, one of the illnesses I suffer from is Fibromyalgia. Since this condition is shared by so many chronic illness sufferers, either as the primary illness or as a secondary one, I wanted to make you aware of a great new magazine on the subject.
The National Fibromyalgia Association has a magazine title "AWARE" which is a wonderful resource and it is now available for purchase at CVS stores nationwide. As most of us with chronic illness know, it is rare for publications on specific illnesses to be available in regular places such as pharmacies, newstands , etc. . . With CVS offering "AWARE" it changes that. This is great news because it means you can pick up a copy when you are out running errands, getting a prescription filled or whatever. It will also bring awareness of this illness to larger audience of people who are shopping for magazines at CVS. Because there are still so many people who are unaware of what Fibromyalgia is, it will serve as an educational tool for them as well!
I hope you will support the National Fibromyalgia Association and this publication by purchasing the magazine and by letting others know it is available as well.
The National Fibromyalgia Association has a magazine title "AWARE" which is a wonderful resource and it is now available for purchase at CVS stores nationwide. As most of us with chronic illness know, it is rare for publications on specific illnesses to be available in regular places such as pharmacies, newstands , etc. . . With CVS offering "AWARE" it changes that. This is great news because it means you can pick up a copy when you are out running errands, getting a prescription filled or whatever. It will also bring awareness of this illness to larger audience of people who are shopping for magazines at CVS. Because there are still so many people who are unaware of what Fibromyalgia is, it will serve as an educational tool for them as well!
I hope you will support the National Fibromyalgia Association and this publication by purchasing the magazine and by letting others know it is available as well.
Monday, October 6, 2008
The Death of Customer Service
Has anyone else noticed that there seems to be a lack of customer service these days? I've watched this trend over the past 10 years or so decline further and further, no matter what the industry. Even if you can afford to shop in the higher end stores, there is a lack of knowledgeable sales help, and at the other end of the spectrum, the big box stores, you can't even find an employee most of the time.
Because of the recent move, I have spent more than a little time on the phone with "customer service" people from all sorts of companies, from cable and phone to insurance and social security. Besides being driven to near distraction by the automated phone systems, I have found that when I reach an actual human being there is little or no concern for helping me to resolve whatever issue has prompted my call. I wish I could say this is the rarity, but it has actually been the norm. I have had people be rude to me from the moment they picked up the call. I try very hard to treat everyone I deal with respectfully and courteously, an my mother always said "treat others as you wish to be treated". Unfortunately, it doesn't seem to matter that I am not rude, loud, abusive or obnoxious-- the lack of service is still an issue. I know that people who work with the public all day receive a lot of abuse, most of which is uncalled for, and I think it is one of the toughest jobs in the world. What I don't understand is companies who hire and keep employees who seem bothered by the mere fact that they are being asked to do their job.
I've had a particularly rough time with our local cable TV company. Not only was my installation not done properly, but there is damage to my house and they managed to cut off service to the people who live above me instead of taking the time to do the installation right. The technician came in the door complaining about having too many jobs on his list that day, and proceeded to take the easy way out by disconnecting the tenant upstairs from all their service, and re-tagging the service to us. Of course I didn't know this at the time. My neighbors were left without phone, TV or internet service for 4 days! What a lovely way to make new friends of your neighbors! Luckily, they are good people who understood that the problem was with the cable company and not us. When they finally got someone out here to address the issue I was home, and that technician was the one who told me that the technician before had cut the neighbor's service and hooked us up to it. When I asked why such a thing would happen, he explained that since the cable company can't keep up with the demand they have for service calls, they hire out to sub-contractors. The man who came out was a sub-contractor who apparently didn't care about what he was doing. He saw an easy way to get me up and running and knew the neighbors weren't in, so he simply disconnected them and walked away.
I started working at a young age, and was taught by my upbringing as well as my employers that the customer is always right. My responsibility was to please the customer and to be polite and helpful in doing so. Of course you came across people who were unreasonable or rude, but you did your best to remain professional, and if need be you let a manager handle things. These days you can't even get a manager on a phone or in a store, and many times if you are fortunate enough to reach one, you get a laundry list of their complaints and excuses for why they can't help you.
I don't know where things started to break down, but the chain reaction has been, and I fear will continue to be catastrophic, until we all start to realize that we are in things together. We need qualified people to help us, we have a responsibility to act with kindness and decency toward the people who work with and for us, and we need to stop feeling entitled to things, as if we are somehow more important than the next person in line.
Of course this is never more evident to me than when I am dealing with a healthcare provider and as a chronically ill person I am doing that on an almost daily basis. I try very hard to make a point of thanking someone who provides me with good service, but beyond that I am out of ideas. I am wondering how the rest of you are finding things and what you do to cope when you don't receive proper service? I know that stress isn't good for any of us, especially those already dealing with health problems, and I am looking for creative ways to deal with a problem I don't see going away for a long time. I would appreciate your comments.
Because of the recent move, I have spent more than a little time on the phone with "customer service" people from all sorts of companies, from cable and phone to insurance and social security. Besides being driven to near distraction by the automated phone systems, I have found that when I reach an actual human being there is little or no concern for helping me to resolve whatever issue has prompted my call. I wish I could say this is the rarity, but it has actually been the norm. I have had people be rude to me from the moment they picked up the call. I try very hard to treat everyone I deal with respectfully and courteously, an my mother always said "treat others as you wish to be treated". Unfortunately, it doesn't seem to matter that I am not rude, loud, abusive or obnoxious-- the lack of service is still an issue. I know that people who work with the public all day receive a lot of abuse, most of which is uncalled for, and I think it is one of the toughest jobs in the world. What I don't understand is companies who hire and keep employees who seem bothered by the mere fact that they are being asked to do their job.
I've had a particularly rough time with our local cable TV company. Not only was my installation not done properly, but there is damage to my house and they managed to cut off service to the people who live above me instead of taking the time to do the installation right. The technician came in the door complaining about having too many jobs on his list that day, and proceeded to take the easy way out by disconnecting the tenant upstairs from all their service, and re-tagging the service to us. Of course I didn't know this at the time. My neighbors were left without phone, TV or internet service for 4 days! What a lovely way to make new friends of your neighbors! Luckily, they are good people who understood that the problem was with the cable company and not us. When they finally got someone out here to address the issue I was home, and that technician was the one who told me that the technician before had cut the neighbor's service and hooked us up to it. When I asked why such a thing would happen, he explained that since the cable company can't keep up with the demand they have for service calls, they hire out to sub-contractors. The man who came out was a sub-contractor who apparently didn't care about what he was doing. He saw an easy way to get me up and running and knew the neighbors weren't in, so he simply disconnected them and walked away.
I started working at a young age, and was taught by my upbringing as well as my employers that the customer is always right. My responsibility was to please the customer and to be polite and helpful in doing so. Of course you came across people who were unreasonable or rude, but you did your best to remain professional, and if need be you let a manager handle things. These days you can't even get a manager on a phone or in a store, and many times if you are fortunate enough to reach one, you get a laundry list of their complaints and excuses for why they can't help you.
I don't know where things started to break down, but the chain reaction has been, and I fear will continue to be catastrophic, until we all start to realize that we are in things together. We need qualified people to help us, we have a responsibility to act with kindness and decency toward the people who work with and for us, and we need to stop feeling entitled to things, as if we are somehow more important than the next person in line.
Of course this is never more evident to me than when I am dealing with a healthcare provider and as a chronically ill person I am doing that on an almost daily basis. I try very hard to make a point of thanking someone who provides me with good service, but beyond that I am out of ideas. I am wondering how the rest of you are finding things and what you do to cope when you don't receive proper service? I know that stress isn't good for any of us, especially those already dealing with health problems, and I am looking for creative ways to deal with a problem I don't see going away for a long time. I would appreciate your comments.
Sunday, October 5, 2008
Back Into The Routine
Well, we survived the move. Notice I used the word "survive", because that's what it feels like--something akin to getting through a tough bout of illness or a car accident! The movers were awful and caused a lot of stress and a fair amount of damage. Trying to get back on-line with cable, internet and phone was another hassle. Thankfully, things are starting to get settled and we are unpacking and beginning to feel more at home.
The upside to all the turmoil is that the new place and neighborhood are totally worth what we went through to get here. The new house is wonderful, and once everything is unpacked and we are comfortable, we are going to be very happy here. We did take the time to walk around the neighborhood yesterday morning and were pleasantly surprised at how friendly and nice everyone is. Hey, I even had a positive experience with the local CVS! In fact, the day we moved in we got a visit from a neighbor with a "welcome basket" full of goodies (Irish Soda Bread and candy) as well as some really useful information like a local map, the local newspaper and a pamphlet about the town and all the activities and organizations it offers. It was so sweet and thoughtful, and believe me we have used each item in it already. It was ironic, because for the 2 years we lived in our house in North Carolina we made a welcome basket for each new neighbor, and not only did we not receive one when we moved there, we were never even thanked for doing it. Now if you are from North Carolina, please don't be offended, I am not picking on you. I think that is more the norm now in most parts of the country than what we experienced here. I didn't take it as a reflection on North Carolinian's, more on the state of affairs in our country as a whole. We have lost a sense of community and neighborliness.
All of this rambling leads me back to thinking about how difficult it can be to find help when we need it due to illness. Everyone is so busy these days with their own lives, that a lot of the time they don't think about the fact that people are in need of help, or they feel so overwhelmed by their own circumstances they don't offer to do for others for fear they will get locked into something they can't keep up with. During Invisible Illness Awareness Week, I found out about and was able to download the first 40 pages of Lisa Copen's book, "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend". What a treasure this book is, both for us who are chronically ill, and for those who care about us! It has really concrete ideas of things people can do to help friends who suffer from chronic illness, and she addresses the time concern factor with terrific ideas that take as little as 5 minutes to bigger time commitments should one be able to make them. I am ordering multiple copies to give to friends, family and church members. Maybe I am a Pollyanna, but I truly believe most people WANT to help, they just don't have any idea WHAT to do so they end up doing nothing, or doing something - while nice, which might not be the thing we really need.
I feel encouraged that with this move we are going to be able to start to build a better support system for ourselves, and to be a support to those we meet as well. As I mentioned in my post about being a friend, we have to model the behavior we want to receive. Sometimes when we are in pain or very fatigued, we have a tendency to think that people should just know what we want or need. Not only isn't that fair to others, it is self defeating as well. How can someone meet your expectation if you never state it clearly?
The upside to all the turmoil is that the new place and neighborhood are totally worth what we went through to get here. The new house is wonderful, and once everything is unpacked and we are comfortable, we are going to be very happy here. We did take the time to walk around the neighborhood yesterday morning and were pleasantly surprised at how friendly and nice everyone is. Hey, I even had a positive experience with the local CVS! In fact, the day we moved in we got a visit from a neighbor with a "welcome basket" full of goodies (Irish Soda Bread and candy) as well as some really useful information like a local map, the local newspaper and a pamphlet about the town and all the activities and organizations it offers. It was so sweet and thoughtful, and believe me we have used each item in it already. It was ironic, because for the 2 years we lived in our house in North Carolina we made a welcome basket for each new neighbor, and not only did we not receive one when we moved there, we were never even thanked for doing it. Now if you are from North Carolina, please don't be offended, I am not picking on you. I think that is more the norm now in most parts of the country than what we experienced here. I didn't take it as a reflection on North Carolinian's, more on the state of affairs in our country as a whole. We have lost a sense of community and neighborliness.
All of this rambling leads me back to thinking about how difficult it can be to find help when we need it due to illness. Everyone is so busy these days with their own lives, that a lot of the time they don't think about the fact that people are in need of help, or they feel so overwhelmed by their own circumstances they don't offer to do for others for fear they will get locked into something they can't keep up with. During Invisible Illness Awareness Week, I found out about and was able to download the first 40 pages of Lisa Copen's book, "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend". What a treasure this book is, both for us who are chronically ill, and for those who care about us! It has really concrete ideas of things people can do to help friends who suffer from chronic illness, and she addresses the time concern factor with terrific ideas that take as little as 5 minutes to bigger time commitments should one be able to make them. I am ordering multiple copies to give to friends, family and church members. Maybe I am a Pollyanna, but I truly believe most people WANT to help, they just don't have any idea WHAT to do so they end up doing nothing, or doing something - while nice, which might not be the thing we really need.
I feel encouraged that with this move we are going to be able to start to build a better support system for ourselves, and to be a support to those we meet as well. As I mentioned in my post about being a friend, we have to model the behavior we want to receive. Sometimes when we are in pain or very fatigued, we have a tendency to think that people should just know what we want or need. Not only isn't that fair to others, it is self defeating as well. How can someone meet your expectation if you never state it clearly?
Before I end this post, I am excited to announce that Rosalind Joffe, author of "Women, Work and Autoimmune Disease: Keep Working, Girlfriend!" and career coach and founder of CiCoach.com, will be doing a guest post on this blog in November! I am so honored to have her writing here and look forward to sharing more details with all of you soon!
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