Hiring a Doctor

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Say What? Hiring a doctor? Yup, that’s what I said. Did you know that many doctors seem to forget that we in effect “hire” them for their services? They fit the definition of an employee, or sub contractor even because we pay them for their time and services rendered.  So, why bring this up? Let me explain…

When you have a chronic disease, like lupus, you become well versed in medical terminology, procedures, testing, and of course medications. It is par for the course due, in part, to the fact that depending on your disease course you will be under the care of different doctors for different things that can arise.

For example, I see my family practitioner for everyday things like colds and flu. I see my rheumatologist for my joint pain and other “lupus” related things. I see my neurologist for the brain associated effects, like periphreal neuropathy and migraines. I have also seen orthopedic surgeons, general surgeons and a host of ER doctors. I also see a therapist, because I am depressed. Go figure.

In the course of this disease, it is important for all the doctors that you see to share their information with each other so they can all stay on the same page as it were. Otherwise, you may find that medications and or treatments may be harmful because one does not know what the other has prescribed.

Here is where the hiring comes in. You need to see a family doctor. If the one you currently see feels the need to belittle you or act as if your disease is not real, then fire them and find one who listens and is proactive. Same goes for all the other doctors you may see. I personally have fired a few doctors in my time. Right now I am awaiting an appointment with a new neurologist for example, because my last one did a slew of tests and whenever I tried to get in to see him to discuss the results, there was always some excuse for having to reschedule my appointments. So, I got a new one and I hope he is a good one. Time will tell.

If you learn as much as possible about your condition, then you are a well informed consumer and are able to discern whether or not your particular doctor is right for you. If your doctor does not like the fact that you are well informed, then find another one who does. This is YOUR body, YOUR disease, and YOUR treatment. Not the doctor’s. Knowledge is power. A good clinician will not only encourage you to become informed but will welcome any questions you may have about a certain treatment or procedure or medication without making you feel stupid. Yes, some doctors seem to like the POWER, but YOU are the one paying them so if you are not comfortable, find another one.

When dealing with a chronic disease it is important to remember that YOU are the most important player in this game. Your team consists of your doctors, nurses, support groups, therapists, friends and family. Making sure they all share their information is one of the most important things you need to do in your managed care of your disease. It is vital to stay on top of it, even if it means the occassional phone call or appointment to discuss the finer points of  your treatment.

Ultimately you are in control of  your care. Being a well informed patient has never been more important than now, when you are dealing with a chronic, non-curable disease. Stand up and be assertive for your own health and well being. No one knows how you feel more that YOU. So if that doctor acts like it is all in your head (and yes, I had a few who mentioned it must be because I was a woman looking for attention) then RUN out of that office and find one who listens and respects your symptoms and who wants to find out why! I did and now I have a pretty good team assembled. It is up to you to take care of this.

Dystonia Overview

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A friend of mine suffers from this so I wanted to share the information for all to read and learn. Thanks to Renee Proctor, and all the others who deal with this for being brave enough to share this information with others! This information came from www.dystonia-foundation.org.

What is Dystonia?

Shari and Laurel
Dystonia affects people of all ages andbackgrounds.Photo courtesy of Blind Dog Films.

Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are ‘competing’ for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are approximately 13 forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.

Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, and children of all ages and backgrounds. Estimates suggest that no less than 300,000 people in North America are affected. Dystonia causes varying degrees of disability and pain, from mild to severe. There is presently no cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.

Although there are multiple forms of dystonia and the symptoms of these forms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions.

Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person’s life span. The main exception to this is dystonia that occurs as symptom of another disease or condition that can cause such complications.

No More Stress Please…I said please…

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Ok, I know that I am not immune to stress…we all have stress. Waking up in the morning is stress. Eating food can be stressful. The whole world is filled to the brim in stress. I mean, we are literally swimming in it every moment of every day. Just once, though, I would like to say something like this…”Stress is not welcome here, go away!”. I know, wishful thinking indeed. So, bring on the stress wolfie…I can take it…. 

There are stressors that we get without trying at all. Here is an example… just because I have kids, it is a given that there will be things like car accidents, drama and such. Stress also does not magically stop when they are adults, the stressors just get bigger and more costly.

Our parents are aging too. It is that time of our life where we have to think about and act on taking care of our parents as they age. We are officially middle age and that is the bridge between raising our kids and taking care of our parents. These two things are loaded with stress, but it is a stress that we expect from the time we are aware of life and living.

Now to talk about other stressors. Having a chronic disease can by itself cause major stress because of the symptoms and the impact on your life and family/friends. When you get diagnosed with a chronic, incurable disease, you actually go through the stages of grief. Yes, as if the old you has died and the new you is trying to come to terms with it.

Today was not a good day at all. Stress began before I was out of bed. It has wound its way into most everything today. Maybe it is me, and I am bringing the stress on myself. I don’t think so.  While I am sure that I can shoulder some of the blame, I also allowed others to influence my day with their stress.

In the end, it was a day in which I feel like I should have just stayed in bed, covered my head and maybe no one would notice. It will never happen, but a girl can dream.

Drum Roll Please!

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Well, a great news day! I woke up feeling lovely and wonderful! Amazing even! Scary, isn’t it? You see, for those who don’t know, I am in a particularly bad flare lately and it has been brutal. Pain has been out of control. Depression has been a close second. I have prayed and vented and almost given up at times. Out of the blue, I get a day like today and it gives me the strength to endure the onslaught of the wolf again.

In the interest of helping others, who are virtually housebound in pain, I will repeat a previous post from my archives that discusses the necessity of social networking for those who are chronically ill and cannot get out much.

Most of the people who are chronically ill are not able to afford even a computer, statistically, but to those of us who do have one, it can be a blessing. Yous ee, we can reach out and discuss our diseases knowing that our pain is being felt or has been felt, by those we know online. It is nice to be able to vent and share with others who are also in our journey. So, in the interest of all of us who are chronically ill, I will repost this one. I am also reposting one of my posts about the lupus community as well. Thanks for indulging me.  Enjoy!

The Lupus Community

Many of us have friends, some life long and others shorter term. One of the things that bind us as friends, is a commonality of something. Call it a community of sorts. I have several of these communites in my life. The one I am going to talk about today is the Lupus Community.

I have lupus. This can be a devastating thing that can overwhelm you when you are first diagnosed, and leave you shell shocked for some time. After the intial shock wears off, the knowledge phase kicks in, namely, where you research and learn more about this disease and its effects on your life and family.

It is during this phase that many of us have found a surprising community of folks who have been there, done that and now help others just like themselves. I call this the Lupus Community.

Now, to be certain, you would think that to be great friends would require seeing each other daily, talking on the phone, and sharing life’s events. Yes, that is true. In this community though, we do all of the above with tthe exception of seeing each other in person. We “see” each other online.

In this community, we can share things that we would not tell others. We can be honest, and discuss the way this disease has affected our life, warts and all. We can be brutal in our descriptions of certain manifestations of the disease and feel free to express our innermost feelings without fear of judgment or belittling that many “normals” sometimes do inadvertantly. If we are depressed, we can tell others and know that they will lift us up and help us to get through it. It is a community of others who are dealing with many of the same issues that are difficult to describe to those who are not ill. We laugh at our jokes and inadequacies, we cry when we lose a friend, we rejoice in remission, and we commiserate in our pain. We share links with information and discuss various clinical trials and developments as well as improvements in care and even good doctors versus bad doctors.

In the end, it is a community of caring, intelligent individuals who share a commonality of an incurable disease and who are living with it each and every day. When those closest to us get tired of hearing our complaints, this is the community that will help us and bolster us as we survive each day and keep the wolf at bay. It is a sounding board for us to vent and scream, to cry and laugh, to share and care. We cross all socioeconomic boundaries, all races and religions, and all countries across the world. We speak different languages and have different colors of skin. Underneath it all, though, we share the wolf. We fight it as one, and never give up on each other. We are men and women who share this unique bond. We are young and old, we are survivors one and all.

I am blessed to have found this community and to share it whenever I can. Yes, I may have in incurable disease called lupus, but, and here is the difference, lupus does not have me! I am a lupus survivor! I share this distinction with many millions earthwide! We will fight until our last breath each of us! If you are newly diagnosed, please join in the lupus family and you will feel the love and caring that I have experienced…

See, I am indeed blessed… 

I found this article from the NY times and thought it relevant so enjoy!

Social Networks a Lifeline for the Chronically Ill

By CLAIRE CAIN MILLER Published: March 24, 2010 

A former model who is now chronically ill and struggles just to shower says the people she has met online have become her family. A quadriplegic man uses the Web to share tips on which places have the best wheelchair access, and a woman with multiple sclerosis says her regular Friday night online chats are her lifeline. 

 Amy Tenderich, who has diabetes, writes a blog and manages the social network Diabetic Connect from home in Millbrae, Calif.

For many people, social networks are a place for idle chatter about what they made for dinner or sharing cute pictures of their pets. But for people living with chronic diseases or disabilities, they play a more vital role. “It’s really literally saved my life, just to be able to connect with other people,” said Sean Fogerty, 50, who has multiple sclerosis, is recovering from brain cancer and spends an hour and a half each night talking with other patients online.

People fighting chronic illnesses are less likely than others to have Internet access, but once online they are more likely to blog or participate in online discussions about health problems, according to a report released Wednesday by the Pew Internet and American Life Project and the California HealthCare Foundation. “If they can break free from the anchors holding them down, people living with chronic disease who go online are finding resources that are more useful than the rest of the population,” said Susannah Fox, associate director of digital strategy at Pew and author of the report. They are gathering on big patient networking sites like PatientsLikeMe, HealthCentral, Inspire, CureTogether and Alliance Health Networks, and on small sites started by patients on networks like Ning and Wetpaint.

Sherri Connell, 46, modeled and performed in musicals until, at age 27, she learned she had multiple sclerosis and Lyme disease. She began posting her journal entries online for friends and family to read. Soon, people from all over the world were reading her Web site and telling her they had similar health problems. In 2008, she and her husband started a social network using Ning called My Invisible Disabilities Community. It now has 2,300 members who write about living with lupus, forthcoming operations or medical bills, for example.

“People have good and bad days, and they don’t know a good day’s going to come Wednesday at 5 o’clock when a live support group is meeting,” Ms. Connell said. “The Internet is a great outlet for people to be honest.” Not surprisingly, according to Pew, Internet users with chronic illnesses are more likely than healthy people to use the Web to look for information on specific diseases, drugs, health insurance, alternative or experimental treatments and depression, anxiety or stress. But for them, the social aspects of the Web take on heightened importance. Particularly if they are homebound, they also look to the Web for their social lives, discussing topics unrelated to their illnesses. Some schedule times to eat dinner or watch a movie while chatting online.

John Linna, a pastor in Neenah, Wis., did not know what a blog was when his son suggested he start one after discovering he needed to stay home on a ventilator. “That day my little world began to expand,” he wrote in a post last year about blogging. “Soon I had a little neighborhood. It was like stopping in for coffee every day just to see how things were going.” When Mr. Linna died earlier this year, people all over the Web who had never met him in person mourned the loss.

Others use the Web to find practical tips about living with their disease or disability that doctors and family members, having not lived with it themselves, cannot provide. On Diabetic Connect, a diabetes social network with 140,000 members, people share recipes like low-sugar banana pudding, review products like an insulin pump belt and have discussions like a recent one started by a patient with a new diagnosis. “I don’t like to talk to my family and friends about this,” she wrote. “Honestly I feel helpless. I really just need some advice and people to talk to who might have been experiencing the same things.”

Amy Tenderich is the community manager for Diabetic Connect and writes a blog called Diabetes Mine. “There’s no doctor in the world, unless they’ve actually lived with this thing, that can get into that nitty-gritty,” she said. “I’ve walked away from dinner parties with tears in my eyes because people just don’t understand.”

Patients often use social networks to interact with people without worrying about the stigma of physical disabilities, said Susan Smedema, an assistant professor of rehabilitation counseling at Florida State University who studies the psychosocial aspects of disability. From her home in Maine, Susan Fultz plays online games at Pogo.com and commiserates with people who are frustrated that they do not have a diagnosis for their symptoms. “There’s no worry of being judged or criticized, and that is something that I know a lot of us don’t get in our daily lives,” said Ms. Fultz, who has Lyme disease and psoriatic arthritis.

Those with chronic diseases or disabilities, like all Internet users, have to be wary about sharing private health information online, particularly with anonymous users. Research has also shown that emotions can be contagious, said Paul Albert, digital services librarian at Weill Cornell Medical Library in New York who has researched how social networks meet the needs of patients with chronic diseases. “If you hang out on a message board where people are very negative, you can easily adopt a negative attitude about your disease,” he said. “On the other hand, if people are hopeful, you might be better off.”

Some people also worry that patients might exchange erroneous medical information on the Web, he said. Yet most patient social networks make clear that the information on the site should not substitute for medical advice, and the Pew study found that just 2 percent of adults living with chronic diseases report being harmed by following medical advice found on the Internet. Instead, the sites are used to share information from the front lines, said Lily Vadakin, 45, who has multiple sclerosis and works as a site administrator for Disaboom, a social network for people with disabilities.

For instance, she has discussed with other patients how to combat fatigue by working at home and taking vitamin supplements. “That’s what the community can give you — a real-life perspective,” she said.

A version of this article appeared in print on March 25, 2010, on page B3 of the New York edition.

 

What do you do?

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I am interested in what other people with chronic diseases do in regards to changes they have made in their lives since their diagnosis. Please, if you have a chronic disease, comment on this post and share your experiences with everyone here. To help get you started, I have a few questions below. Pick any or none and comment below. Thanks! I cannot wait to see what you write!

Do you find inventive ways around your disease? If so, what do you do?

 

Have you had to give up certain things or do you still accomodate them albeit in different ways? Have you given things up completely? Do you miss these things?

What things have made you stronger?

Do you feel like life is more enriched since your diagnosis? In what way?

Do you feel cheated? Are you angry?

Do you get support from your family? Friends?

What are your blessings?

Some days it is not worth getting out of bed

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Well hey everybody and thanks for the growth of this blog. I hope you are finding the information you are seeking. It helps when I get your feedback too. Please let me know how you are liking or not liking this blog and feel free to share ways to improve it. Thanks for all your support too! Now, onto the blogging…

For the past few days, I have been dealing with a lot of personal issues. I will not go into them but the gist of it is that others around me seem to feel the need to make me feel inferior, like I am not worthy of any good things. It has made me depressed to say the least. I have been told that I need to exercise more, stop eating or drinking this or that, do more around the house, and the one that blew my mind is the one where I was asked about my medications and did all my doctors know about all the medication I am on. Ok, in short, there are some who feel the need to put me down I guess so they feel better. I get it, but it still hurts.

Following the whole doctors visit and not feeling good at all latley, and you see where I am at. Let me explain this in terms a “normal” person will understand. Here is the scenario, you are flat on your back in bed with the worst flu of your life. You feel weak, and tired and sick. You are barely able to get up to go to the bathroom. Got it? Ok, then picture someone coming into your room and asking why you are flat on your back. You explain and then they tell you that if you would get up and run a mile you would feel better, and if you would only eat that one thing and not eat something else you wuld feel much better. Oh, and then tell you that you are supposed to get up and do the housework, cook the meals, and everything associated with your home, all this while you barely have the energy to get out of bed! Factor in the implied notion from this person that you are really not sick but just seekign attention. How would you feel?

This is how it is for those of us who suffer chronic diseases. Some days we are able to get up, and participate in life as usual. Other days, the bad ones, we feel like c-rap and just need empathy. When you hear of someone who is ill do you like to help them out? Maybe make some dinner and take it to them? Call and check on them to see how they are? See if you can help around the house? Many people do this when there is an illness in their social network. When you have a chronic disease, at first some may do these things, but unfortunately, as time goes on, this ceases. That is the difference between acute and chronic.

You know, sometimes, just a phone call to inquire how the day is going and about nothing in particular, can be a lifeline to those who are ill. Letting them know you are thinking of them is an amazing feeling. It makes them feel like there are those who still think of them, even if they are not able to hang out and do what they used to do. Sometimes, just asking if you can help out, and it does not have to be a big thing either, can mean the world to the one who is ill. The effort is well worth the time you will spend.

We hear of random acts of kindness all the time. Well, today I am challenging you all to do a random act of kindness for someone you know. It may be that new mother down the street, or it can be dropping by your friends house and visiting for a few minutes. In our busy hectic lives, we have lost something essential to our existence, that human empathy that makes us interconnect. So in an effort to do this, bake some cookies for your neighbor, visit or call long lost friends, check in on your older neighbors or family, and begin to feel again. I think you will like how you feel and you could make the difference in someone’s day in a positive way.

 

Social Networking for the chronically ill

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I found this article fromt he NY times and thought it relevant so enjoy!

Social Networks a Lifeline for the Chronically Ill

By CLAIRE CAIN MILLER Published: March 24, 2010 

A former model who is now chronically ill and struggles just to shower says the people she has met online have become her family. A quadriplegic man uses the Web to share tips on which places have the best wheelchair access, and a woman with multiple sclerosis says her regular Friday night online chats are her lifeline. 

 Amy Tenderich, who has diabetes, writes a blog and manages the social network Diabetic Connect from home in Millbrae, Calif.

For many people, social networks are a place for idle chatter about what they made for dinner or sharing cute pictures of their pets. But for people living with chronic diseases or disabilities, they play a more vital role. “It’s really literally saved my life, just to be able to connect with other people,” said Sean Fogerty, 50, who has multiple sclerosis, is recovering from brain cancer and spends an hour and a half each night talking with other patients online.

People fighting chronic illnesses are less likely than others to have Internet access, but once online they are more likely to blog or participate in online discussions about health problems, according to a report released Wednesday by the Pew Internet and American Life Project and the California HealthCare Foundation. “If they can break free from the anchors holding them down, people living with chronic disease who go online are finding resources that are more useful than the rest of the population,” said Susannah Fox, associate director of digital strategy at Pew and author of the report. They are gathering on big patient networking sites like PatientsLikeMe, HealthCentral, Inspire, CureTogether and Alliance Health Networks, and on small sites started by patients on networks like Ning and Wetpaint.

Sherri Connell, 46, modeled and performed in musicals until, at age 27, she learned she had multiple sclerosis and Lyme disease. She began posting her journal entries online for friends and family to read. Soon, people from all over the world were reading her Web site and telling her they had similar health problems. In 2008, she and her husband started a social network using Ning called My Invisible Disabilities Community. It now has 2,300 members who write about living with lupus, forthcoming operations or medical bills, for example.

“People have good and bad days, and they don’t know a good day’s going to come Wednesday at 5 o’clock when a live support group is meeting,” Ms. Connell said. “The Internet is a great outlet for people to be honest.” Not surprisingly, according to Pew, Internet users with chronic illnesses are more likely than healthy people to use the Web to look for information on specific diseases, drugs, health insurance, alternative or experimental treatments and depression, anxiety or stress. But for them, the social aspects of the Web take on heightened importance. Particularly if they are homebound, they also look to the Web for their social lives, discussing topics unrelated to their illnesses. Some schedule times to eat dinner or watch a movie while chatting online.

John Linna, a pastor in Neenah, Wis., did not know what a blog was when his son suggested he start one after discovering he needed to stay home on a ventilator. “That day my little world began to expand,” he wrote in a post last year about blogging. “Soon I had a little neighborhood. It was like stopping in for coffee every day just to see how things were going.” When Mr. Linna died earlier this year, people all over the Web who had never met him in person mourned the loss.

Others use the Web to find practical tips about living with their disease or disability that doctors and family members, having not lived with it themselves, cannot provide. On Diabetic Connect, a diabetes social network with 140,000 members, people share recipes like low-sugar banana pudding, review products like an insulin pump belt and have discussions like a recent one started by a patient with a new diagnosis. “I don’t like to talk to my family and friends about this,” she wrote. “Honestly I feel helpless. I really just need some advice and people to talk to who might have been experiencing the same things.”

Amy Tenderich is the community manager for Diabetic Connect and writes a blog called Diabetes Mine. “There’s no doctor in the world, unless they’ve actually lived with this thing, that can get into that nitty-gritty,” she said. “I’ve walked away from dinner parties with tears in my eyes because people just don’t understand.”

Patients often use social networks to interact with people without worrying about the stigma of physical disabilities, said Susan Smedema, an assistant professor of rehabilitation counseling at Florida State University who studies the psychosocial aspects of disability. From her home in Maine, Susan Fultz plays online games at Pogo.com and commiserates with people who are frustrated that they do not have a diagnosis for their symptoms. “There’s no worry of being judged or criticized, and that is something that I know a lot of us don’t get in our daily lives,” said Ms. Fultz, who has Lyme disease and psoriatic arthritis.

Those with chronic diseases or disabilities, like all Internet users, have to be wary about sharing private health information online, particularly with anonymous users. Research has also shown that emotions can be contagious, said Paul Albert, digital services librarian at Weill Cornell Medical Library in New York who has researched how social networks meet the needs of patients with chronic diseases. “If you hang out on a message board where people are very negative, you can easily adopt a negative attitude about your disease,” he said. “On the other hand, if people are hopeful, you might be better off.”

Some people also worry that patients might exchange erroneous medical information on the Web, he said. Yet most patient social networks make clear that the information on the site should not substitute for medical advice, and the Pew study found that just 2 percent of adults living with chronic diseases report being harmed by following medical advice found on the Internet. Instead, the sites are used to share information from the front lines, said Lily Vadakin, 45, who has multiple sclerosis and works as a site administrator for Disaboom, a social network for people with disabilities.

For instance, she has discussed with other patients how to combat fatigue by working at home and taking vitamin supplements. “That’s what the community can give you — a real-life perspective,” she said.

A version of this article appeared in print on March 25, 2010, on page B3 of the New York edition.