133,000,000 Americans have a chronic medical condition or illness. 23,500,000 Americans have an autoimmune disease. Of all the 20 year olds working right now, 3 out of 10 will end up on disability. The population of the United States is about 304,000,000. Lots of us are sick.
Yet, each one of us feels like we are the only one. We feel stigmatized, alone, isolated, damaged, hopeless and helpless. In my darkest time with lupus, I would go to sleep praying that I would not wake up in the morning. When that prayer turned to figuring out how to make it happen, I went for help. But the help didn't have a clue. So, I decided to figure out how to live with lupus.
These days I am nothing short of a chronic illness missionary. We may have chronic diseases but that does not mean our lives are over. Writing in Illness as Metaphor, Susan Sontag describes disease as a passport that takes us from the land of the well to the land of the sick.
Try to imagine a culture very different from yours, as different as you can imagine. Everything is different: the language, social rules, dress, religion, etc. Now imagine yourself permanently transported to that culture. What would you do? How long would you expect the new culture to conform to your ideas? How long would you isolate yourself? How willing would you be to learn about this new culture? Would you give up and spend the rest of your life bemoaning your situation or would you find a way to incorporate this new culture into your life?
We have been given a passport to the land of the sick and there is no going back. Everything is different. We have a choice. We can be angry, isolate ourselves, and expect the healthy world to conform to us, or we can find ways to incorporate this new culture into our lives. We have a choice.
Saturday, February 6, 2010
Friday, January 22, 2010
Letting Go-Again!
When I left my second husband in May of 2002, I grabbed an armful of clothes and my blow dryer. I wasn’t running from something horrible like violence. I just could not stand my life the way it was. So I left. The only thing I went back for was the computer. I guess that says something about my priorities-clothes to cover the body, not having to go out with bed head, and the internet!
Slowly, I built a new life with new “stuff” in it. I loved my little apartment overlooking the pond. Then BINGO lupus crash! The first stuff to go was my ability to work, and therefore my jobs. A lot of the time, I struggled to pay for my medical care and food. But when a little extra money came my way, I treated myself to something at the Dollar Store or half price day at the thrift stores. I sold many of my books on half.com as my passion for music, church music, and spirituality turned into a new course of learning how to live as a citizen in the land of the chronically ill.
Four years after the crash, I tentatively and timidly went off disability and back into the work force-that was January of 2007. For three years now, I have hung onto the “stuff” of that disability period. I have notebooks full of ways that I thought I would make a living when I couldn’t even stay awake for three hours in a row! In my closet I have a pysanky kit. Pysanky are Ukranian batik Easter eggs. A really good ostrich pysanky can bring $400. Then there is a notebook with the course of “how to become a medical biller and coder at home.” And let’s not forget the plethora of Christmas ornament instructions, including how to make “icicles” out of thin sheets of tin. Mind you, I could not even grasp a tea cup but I was going to use tin snips to make the icicles! The under-the-bed plastic boxes are full of fabric that I bought on sale with the expectation of saving money by sewing. I have carted some of it around for 7 years now! By the way, I never did make a $400 ostrich egg.
Sometimes we let go because we will suffocate if we don’t. Sometimes circumstances or disease make us let go as we are robbed of our ability and security. Other times, we recognize that it’s time to start a new chapter and we choose to let go. As my life takes me to places I never dreamed I would go, I find that it’s time to let go of stuff again. As I slowly sort through my “stuff” I am remembering periods in my life, treasuring them, and letting go so I can move forward once again.
There is a wonderful story about people in Africa who catch monkeys to eat them. (OK that’s gross, but get over it.) The people take a jar with a narrow neck and put fruit in the jar. The monkeys stick their hands in the jar but can’t pull them out while holding the fruit. They won’t let go of the fruit so they get caught and well, you know what happens next!
Slowly, I built a new life with new “stuff” in it. I loved my little apartment overlooking the pond. Then BINGO lupus crash! The first stuff to go was my ability to work, and therefore my jobs. A lot of the time, I struggled to pay for my medical care and food. But when a little extra money came my way, I treated myself to something at the Dollar Store or half price day at the thrift stores. I sold many of my books on half.com as my passion for music, church music, and spirituality turned into a new course of learning how to live as a citizen in the land of the chronically ill.
Four years after the crash, I tentatively and timidly went off disability and back into the work force-that was January of 2007. For three years now, I have hung onto the “stuff” of that disability period. I have notebooks full of ways that I thought I would make a living when I couldn’t even stay awake for three hours in a row! In my closet I have a pysanky kit. Pysanky are Ukranian batik Easter eggs. A really good ostrich pysanky can bring $400. Then there is a notebook with the course of “how to become a medical biller and coder at home.” And let’s not forget the plethora of Christmas ornament instructions, including how to make “icicles” out of thin sheets of tin. Mind you, I could not even grasp a tea cup but I was going to use tin snips to make the icicles! The under-the-bed plastic boxes are full of fabric that I bought on sale with the expectation of saving money by sewing. I have carted some of it around for 7 years now! By the way, I never did make a $400 ostrich egg.
Sometimes we let go because we will suffocate if we don’t. Sometimes circumstances or disease make us let go as we are robbed of our ability and security. Other times, we recognize that it’s time to start a new chapter and we choose to let go. As my life takes me to places I never dreamed I would go, I find that it’s time to let go of stuff again. As I slowly sort through my “stuff” I am remembering periods in my life, treasuring them, and letting go so I can move forward once again.
There is a wonderful story about people in Africa who catch monkeys to eat them. (OK that’s gross, but get over it.) The people take a jar with a narrow neck and put fruit in the jar. The monkeys stick their hands in the jar but can’t pull them out while holding the fruit. They won’t let go of the fruit so they get caught and well, you know what happens next!
Thursday, January 14, 2010
The Power of Words
In February of 2003, after more than a week in the hospital, the doctors finally came up with a diagnosis for me: systemic lupus erythematosus. My rheumatologist stood at the side of my bed and said, "You have lupus. Do you know what that is?" I muttered something about it being autoimmune, making you tired, and having to stay out of the sun. "Good," he said, and left.
The hospital stay was 14 days. A month after my discharge,I went to see my rheumatologist for a follow up. I wanted to know if lupus was progressive, if I would be able to work again, if I would lose my independence, if I would die a slow lingering death by inches. He didn't give me any concrete answers. I was madder than a wet hen and did what I always do when I am frightened or angry, I go to work learning and looking for a solution. I lost both my jobs and ended up on disability.
In 2007, I went back to work and went off disability. Over those 4 years, my progress was excruciatingly slow but it was steady. I still see my rheumatologist every 3 months. At my last apointment, I thanked him for being so vague back in 2003. He left me to figure a lot out for myself. What I figured out was that this "disability" was going to be temporary. In my mind, it was just going to take longer to get back on my feet than it had all those times I got sick and was never diagnosed.
The words that others say to us and those we say to ourselves are extremely powerful. Words can precondition us for failure and surrender. Words can also light the way out of the darkness. What are people telling you? What are you telling yourself?
If you want to read an excellent book about this check out Counter Clockwise: Mindful Health and the Power of Possibility by Ellen J. Langer.
The hospital stay was 14 days. A month after my discharge,I went to see my rheumatologist for a follow up. I wanted to know if lupus was progressive, if I would be able to work again, if I would lose my independence, if I would die a slow lingering death by inches. He didn't give me any concrete answers. I was madder than a wet hen and did what I always do when I am frightened or angry, I go to work learning and looking for a solution. I lost both my jobs and ended up on disability.
In 2007, I went back to work and went off disability. Over those 4 years, my progress was excruciatingly slow but it was steady. I still see my rheumatologist every 3 months. At my last apointment, I thanked him for being so vague back in 2003. He left me to figure a lot out for myself. What I figured out was that this "disability" was going to be temporary. In my mind, it was just going to take longer to get back on my feet than it had all those times I got sick and was never diagnosed.
The words that others say to us and those we say to ourselves are extremely powerful. Words can precondition us for failure and surrender. Words can also light the way out of the darkness. What are people telling you? What are you telling yourself?
If you want to read an excellent book about this check out Counter Clockwise: Mindful Health and the Power of Possibility by Ellen J. Langer.
Thursday, January 7, 2010
Antibiotic "Ah Ha" Moment
My reading and research has shifted from the emotional side of chronic illness to the "why" of chronic illness. There are about 133,000,000 Americans with chronic medical conditions! Autism, allergies, ADHD, and asthma among children are increasing at alarming rates. Most of us intuitively feel that diet has something to do with all this. In fact, most newly diagnosed lupus patients who call the Lupus Foundation ask me if they can "go natural" and not take medication. My response is that it is not "natural" for your immune system to turn against you, and the cure is not simply natural either, take the medication. But I also encourage them to make lifestyle changes. Stress, toxins, lifestyle and diet all contribute to overall health. Those of us with chronic conditions have to be even more vigilant if we want to have the best level of health.
This brings me to antibiotics. Scientists tell us about super bugs that are antibiotic resistant. Antibiotics are frequently prescribed, not because the patient has a bacterial infection, but because the patient wants the doctor to give them something and the doctor complies. Sometimes antibiotics are life saving. No matter what, when we take antibiotics, the good bacteria that live in our gut are killed off along with the bad. We can replenish them by eating yogurt and drinking Kefir.
No one would take antibiotics on a daily basis for life. But wait! Most of us do! Farmed fish and animals are given antibiotics even if they are not sick. The farming conditions are so unsanitary that this is the only way to make sure the valuable "crop" doesn't get sick and die! If you eat meat, you are eating antibiotics. Antibiotics are in our eggs and milk. And if that's not enough, antibiotics are in our water! Check out the Environmental Working Group report on tap water http://www.ewg.org/tap-water/welcome.
When I tell people about antibiotics in drinking water their first reaction is that people may flush unused antibiotics down the toilet. Yes, that happens. But the antibiotics that we take and those that farm animals take are not fully metabolized. Some of the antibiotic passes as waste and enters the water table. They are not filtered out as the water trickles down. Many people say, "I drink bottled water, not a problem." Not true! Where do they think the bottled water comes from? In fact, tap water is checked and regulated, bottled water is not!
Why does it matter if we are consuming antibiotics in everything from our morning tea and omelette to that healthy salmon steak for dinner? We are destroying the healthy bacteria that live in our gut. 70% of our immune system is in our gut. We are making our immune system unbalanced which can result in allergies, autoimmunity (23.5 million Americans), and cancer.
What can we do? Clearly it is impossible to eliminate all the antibiotics that find their way into our bodies, but we can reduce the body burden. If you must eat animal products, choose those that are raised without antibiotics. More and more major markets are carrying these options. Add some organic yogurt to your diet and you have taken one big step to better health.
This brings me to antibiotics. Scientists tell us about super bugs that are antibiotic resistant. Antibiotics are frequently prescribed, not because the patient has a bacterial infection, but because the patient wants the doctor to give them something and the doctor complies. Sometimes antibiotics are life saving. No matter what, when we take antibiotics, the good bacteria that live in our gut are killed off along with the bad. We can replenish them by eating yogurt and drinking Kefir.
No one would take antibiotics on a daily basis for life. But wait! Most of us do! Farmed fish and animals are given antibiotics even if they are not sick. The farming conditions are so unsanitary that this is the only way to make sure the valuable "crop" doesn't get sick and die! If you eat meat, you are eating antibiotics. Antibiotics are in our eggs and milk. And if that's not enough, antibiotics are in our water! Check out the Environmental Working Group report on tap water http://www.ewg.org/tap-water/welcome.
When I tell people about antibiotics in drinking water their first reaction is that people may flush unused antibiotics down the toilet. Yes, that happens. But the antibiotics that we take and those that farm animals take are not fully metabolized. Some of the antibiotic passes as waste and enters the water table. They are not filtered out as the water trickles down. Many people say, "I drink bottled water, not a problem." Not true! Where do they think the bottled water comes from? In fact, tap water is checked and regulated, bottled water is not!
Why does it matter if we are consuming antibiotics in everything from our morning tea and omelette to that healthy salmon steak for dinner? We are destroying the healthy bacteria that live in our gut. 70% of our immune system is in our gut. We are making our immune system unbalanced which can result in allergies, autoimmunity (23.5 million Americans), and cancer.
What can we do? Clearly it is impossible to eliminate all the antibiotics that find their way into our bodies, but we can reduce the body burden. If you must eat animal products, choose those that are raised without antibiotics. More and more major markets are carrying these options. Add some organic yogurt to your diet and you have taken one big step to better health.
Wednesday, December 16, 2009
Back in the Blogosphere: The Prodigal Returns
The last 4+ months have been busy ones! I have been fortunate enough to work with a fantastic writing partner, Robert Norman DO. Our book 100 Questions and Answers about Chronic Illness we released on December 1, 2009! We hope you will buy it! http://www.amazon.com/Questions-Answers-About-Chronic-Illness/dp/0763777641/ref=sr_1_6?ie=UTF8&s=books&qid=1260980615&sr=8-6
Approximately 1 in 3 Americans has a chronic medical condition, one that will last a long time, perhaps for life. 7 out of 10 twenty year olds now working will end up on disability at some point in their career. 23.5 million American have autoimmune diseases. Why are there so many sick people?
Diseases that were fatal half a decade ago are now treatable, but not always curable. Diseases are diagnosed and treated earlier. Aging boomers are becoming senior citizes with the many problems that come with age. More people stay alive longer with chronic conditions.
We need a differnt model for managing our chronic conditions. Most doctors receive most of their training in acute care. Acute conditions that have a clear beginning, diagnosis and treatment. In acute care, the doctor often takes a paternalistic role. But chronic care is another matter altogether. In chronic care, the doctor and patient must be partners in managing the disease.
The American Journal of Public Health estimates that 45,000 deaths a year in the United States can be attributed to lack of health insurance! These people often wait until a problem is significant before seeking medical attention. Some of their conditions, which might have been curable at the onset, have now become chronic.
100 Questions and Answers about Chronic Illness looks at issues that are common to all chronic illnesses. Many of the ideas for the book began aas posts in this blog.
So, the prodigal is back to the blogoshere today, with renewed commitment to keep posting! Thanks!
Approximately 1 in 3 Americans has a chronic medical condition, one that will last a long time, perhaps for life. 7 out of 10 twenty year olds now working will end up on disability at some point in their career. 23.5 million American have autoimmune diseases. Why are there so many sick people?
Diseases that were fatal half a decade ago are now treatable, but not always curable. Diseases are diagnosed and treated earlier. Aging boomers are becoming senior citizes with the many problems that come with age. More people stay alive longer with chronic conditions.
We need a differnt model for managing our chronic conditions. Most doctors receive most of their training in acute care. Acute conditions that have a clear beginning, diagnosis and treatment. In acute care, the doctor often takes a paternalistic role. But chronic care is another matter altogether. In chronic care, the doctor and patient must be partners in managing the disease.
The American Journal of Public Health estimates that 45,000 deaths a year in the United States can be attributed to lack of health insurance! These people often wait until a problem is significant before seeking medical attention. Some of their conditions, which might have been curable at the onset, have now become chronic.
100 Questions and Answers about Chronic Illness looks at issues that are common to all chronic illnesses. Many of the ideas for the book began aas posts in this blog.
So, the prodigal is back to the blogoshere today, with renewed commitment to keep posting! Thanks!
Thursday, August 6, 2009
Unbelievable and the beat goes on...
The voice mail on my cell was full. It happens. If I miss a call, I look at who called and call them back. Unless, that is, I don't recognize the number. Last night the voice mail was full. A dear friend with whom I was having lunch today called to ask if we could meet an hour earlier. Of course, I did not get the message, but did call him back. He was frustrated by the full message, so I decided it was time to listen to the 20 messages hanging out in the in box.
Well...........
There was a message from Integrated Benefits, the folks who handled my disability case. The nice young man informed me that the lawyer had reviewed my case and the three rejections for Social Security Disability and that the lawyer thought we had a case. So, we are going ahead with an appeal in Federal court. It will probably be another 18 months before there is a hearing. That would be April 2011. I filed for disability when I desparately needed it in September of 2003 after trying my very best to work for 6 months.
I don't have a lot to gain from this. Maybe 1-2 thousand dollars. My back payments would go to Mutual of Omaha. Any cost of living increases would go to me. Now, I could let this go and that would be the end of it. But, to tell the truth, I was thrown away by my own government and that really, really hurts. People die while waiting to go through the system. Believe it or not, it happens. And did you know that if you DO get approved for SSDI, you do not get any health insurance for two years after the date you applied?
Everyone has a right to life.
As health care forums and updates have been going on around the country today, tea baggers have been doing the most horrid and irrational things. We need dialogue and we need action. No system is perfect, but some systems are more perfect than others. What is clear is that THIS current system may respect the lives of those in utero, but those of us who are quite outside the uterus and functioning in the world are expendable.
It will take time to fix things. I hope the time is short.
Well...........
There was a message from Integrated Benefits, the folks who handled my disability case. The nice young man informed me that the lawyer had reviewed my case and the three rejections for Social Security Disability and that the lawyer thought we had a case. So, we are going ahead with an appeal in Federal court. It will probably be another 18 months before there is a hearing. That would be April 2011. I filed for disability when I desparately needed it in September of 2003 after trying my very best to work for 6 months.
I don't have a lot to gain from this. Maybe 1-2 thousand dollars. My back payments would go to Mutual of Omaha. Any cost of living increases would go to me. Now, I could let this go and that would be the end of it. But, to tell the truth, I was thrown away by my own government and that really, really hurts. People die while waiting to go through the system. Believe it or not, it happens. And did you know that if you DO get approved for SSDI, you do not get any health insurance for two years after the date you applied?
Everyone has a right to life.
As health care forums and updates have been going on around the country today, tea baggers have been doing the most horrid and irrational things. We need dialogue and we need action. No system is perfect, but some systems are more perfect than others. What is clear is that THIS current system may respect the lives of those in utero, but those of us who are quite outside the uterus and functioning in the world are expendable.
It will take time to fix things. I hope the time is short.
Sunday, July 19, 2009
Unbelievable
The System Is Broken
Last week, as I pulled into my apartment complex, I got a call on my cell. I didn’t recognize then number but I picked up anyway since no collection agencies are hunting me down at the moment for past due medical bills.
“Hi, this is Fred at Integrated Benefits. I am calling to tell you that your request for a Social Security appeal had been denied. We can take it to Federal Court if you want.”
I was speechless. Take a look at this time line and you may end up speechless, too!
February 2003-acute onset systemic lupus (14 days in hospital)
April 2003-tried to return to work but kept getting sent home
May 2003-pastor at Grace Episcopal Church calls me in to tell me that he thinks I am too weak to continue both jobs. So they are letting me go so I can really concentrate on the bigger job. (WOW, and thanks ever so much!)
September 2003-pastor at Queen of Peace calls me in to say there is no more funding for my job. Here is a severance package, have a nice life.
(I realize that I am still quite sick and unemployable and decide to go for disability and apply through private insurance and Social Security)
October 2003-kidney biopsy confirms lupus nephritis. Go on chemo. Cry a lot.
February 2004-pastor from Queen of Peace drags feet about confirming my salary and employment. I hint (OK it was more than a hint) to sue the Diocese and Bishop. Necessary papers are magically faxed the next day and I get the private disability BUT there is a caveat. I have to sign my SSDI over to the private company and let them represent me. Well when you are on food stamps and have an eviction notice on your door you will sign darned near anything.
September 2004-first Social Security rejection. File immediate appeal.
September 2005-second Social Security rejection. File immediate appeal requesting administrative law judge hearing.
July 2006-hearing. (That will be the subject of another post)
November 2006-rejected. Filed appeal.
January 2007-I decide to find a way to survive without any disability and take a part time job at the Lupus Foundation and a church. Call the private disability folks and ask how to get OFF. No one calls back. (This is yet another future post.) Checks kept coming. I stacked them up on the kitchen counter but did not cash them.
FAST FORWARD
July 2009-Integrated Benefits called to tell me that my appeal that was filed in November 2006 was denied and would I like to request a hearing in FEDERAL COURT? Of course (and I am telling the truth so help me God), I cannot expect to hear for another 18 MONTHS if they will hear the case or not.
That would be January 2011! That will be 10 ½ years! AND I will then have to wait until a decision is rendered after that. Of course, I will not get disability. All this is past stuff. What I could get is the cost of living increases from the years I was on private disability. It might just be enough to buy Christmas presents in 2012 or maybe pay off one of those medical collections!
Last week, as I pulled into my apartment complex, I got a call on my cell. I didn’t recognize then number but I picked up anyway since no collection agencies are hunting me down at the moment for past due medical bills.
“Hi, this is Fred at Integrated Benefits. I am calling to tell you that your request for a Social Security appeal had been denied. We can take it to Federal Court if you want.”
I was speechless. Take a look at this time line and you may end up speechless, too!
February 2003-acute onset systemic lupus (14 days in hospital)
April 2003-tried to return to work but kept getting sent home
May 2003-pastor at Grace Episcopal Church calls me in to tell me that he thinks I am too weak to continue both jobs. So they are letting me go so I can really concentrate on the bigger job. (WOW, and thanks ever so much!)
September 2003-pastor at Queen of Peace calls me in to say there is no more funding for my job. Here is a severance package, have a nice life.
(I realize that I am still quite sick and unemployable and decide to go for disability and apply through private insurance and Social Security)
October 2003-kidney biopsy confirms lupus nephritis. Go on chemo. Cry a lot.
February 2004-pastor from Queen of Peace drags feet about confirming my salary and employment. I hint (OK it was more than a hint) to sue the Diocese and Bishop. Necessary papers are magically faxed the next day and I get the private disability BUT there is a caveat. I have to sign my SSDI over to the private company and let them represent me. Well when you are on food stamps and have an eviction notice on your door you will sign darned near anything.
September 2004-first Social Security rejection. File immediate appeal.
September 2005-second Social Security rejection. File immediate appeal requesting administrative law judge hearing.
July 2006-hearing. (That will be the subject of another post)
November 2006-rejected. Filed appeal.
January 2007-I decide to find a way to survive without any disability and take a part time job at the Lupus Foundation and a church. Call the private disability folks and ask how to get OFF. No one calls back. (This is yet another future post.) Checks kept coming. I stacked them up on the kitchen counter but did not cash them.
FAST FORWARD
July 2009-Integrated Benefits called to tell me that my appeal that was filed in November 2006 was denied and would I like to request a hearing in FEDERAL COURT? Of course (and I am telling the truth so help me God), I cannot expect to hear for another 18 MONTHS if they will hear the case or not.
That would be January 2011! That will be 10 ½ years! AND I will then have to wait until a decision is rendered after that. Of course, I will not get disability. All this is past stuff. What I could get is the cost of living increases from the years I was on private disability. It might just be enough to buy Christmas presents in 2012 or maybe pay off one of those medical collections!
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