The Ministry of Lisa Copen

Lisa Copen, Founder of Rest Ministries which serves the chronically ill, shares about mothering, illness, ministry and more.

Archive for Health care

Alternative Medicine Resources – Talking to Your Doctor

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If you are interested in trying an alternative treatment like acupuncture or chiropractic or herbal remedies the important thing is to do our research wisely. About 36% of Americans use some form of alternative medicine or treatment according to the National Center for Complimentary and Alternative Medicine.

To find a professional, the National Library of Medicine has a search engine where you can type in a specific treatment, an organzation, or a name, to find referrals in your area.

The National Center for Complimentary and Alternative Medicine also has a variety of fact sheets that can help you think about the issues to consider and questions to ask. For many patients, knowing how to bring up the topic with his or her doctor can be difficult. There is a fact sheet called, “Tips for Talking With Your Health Care Providers About CAM.”

Other fact sheets include:

About Herbal and Dietary Supplements

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The “Dispensary of Hope” Offers Medications

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Every time we hear about medications being distributed for free at low cost it seems we don’t qualify. But I still believe that if you need the medications, you should continue to pursue every resource you hear about because you never know when you may find the service that works for you!

Perhaps The Dispensary of Hope could be one of your options (Don’t you love that name? I kind of wish that was Rest Ministries tag line, “The Dispensary of Hope.) This organization is “a young and growing not-for-profit network of prescription drug contributors, collection and distribution sites, and dispensing medical centers – all designed to assist people who can’t afford needed drugs (income below 200% of the federal poverty guidelines) and lack the insurance to cover them.”

They even have a mail-order pharmacy to provide direct patient access to assistance programs.

According to them, about 1,000 medical practices in the U.S. donate drug samples that otherwise would be  destroy (worth tens of millions of dollars) . They are donated to a 30-location med dispensary system and this system hands out  100,000 prescriptions a year to low-income patients.

For details see “How it Works” at their web site. They also have a blog with M-F posts from guest bloggers. With the USA’s healthcare reform on the table, you will find some interesting information here including a recent post, Increasing Medicaid Enrollment + Doctor Shortage + Fewer Docs taking Medicaid = Tough times for those in need.



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Interview with Lisa About Invisible Illness Week

Lisa Copen joins us today as the founder of National Invisible Chronic Illness Awareness Week. This year it is September 14-20, 2009 and there are lots of ways to get involved, including a free 5-day virtual conference. Lisa is on a blog tour to help people know about the event and how it can specifically encourage you.

Tell us about National Invisible Chronic Illness Awareness Week. That’s quite a mouthful!

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LC: Yes. Often I refer to it as just Invisible Illness Week or NICIAW. Our
mission is to have a designated time, worldwide, in which people who live with chronic illness, those who love them, and organizations are encouraged to educate the general public, churches, health care professionals and government officials about the affects of living with a disease that is not visually apparent. Through programs and resources, we seek to recognize the daily challenges of more than 100 million adults and children who live with invisible illness.

Its also a great chance for people with any illness to be involved in a national
event to increase the understanding of their own particular disease. They can
use our event to blog about the emotions of living with their illness, for example, how they often may look perfectly fine but are in deep pain.

Explain to me what a virtual conference is.

LC: The virtual conference is a unique opportunity to “attend a conference”
without having to get out of your pajamas! The main event of National Invisible Chronic Illness Awareness Week is this 5-day virtual conference–which is all completely free–September 14-18. We have 20 speakers who are experts in chronic illness and their specific area and each will be giving a 40-minute seminar and then taking calls from our listeners live. The seminars are M-F, 4 times a day, and will feature a variety of topics such as going to college, the challenges of marriage, applying for disability financial assistance, cleaning and organizing, finding the right job, faith, preparing for surgery, parenting, and many more.

You can listen to them all free live, or later on your computer, even download them from itunes. Or they can be purchased on a CD.

Really? So are last years programs available too?

LC: They are. Before last year we used a chat room and had written transcripts, but 2008’s can be listened to free from your computer, downloaded from itunes, or purchased on a CD.

I know a lot of us would love to attend a 5-day conference on how to better cope with chronic illness, but because of our illness, traveling, finances, sitting for so long, and other factors, it just isn’t possible, so this is perfect.

LC: Isn’t it? There’s a certain amount of irony that we began doing the virtual
conferences years ago, but now a lot of companies and organizations are choosing this option instead of an actual conference because of the economy.

Tell us why you started Invisible Illness Week? What made you see this as necessary?

LC: For a few reasons. I began Rest Ministries in 1997, a Christian organization for people who live with any kind of chronic illness or pain, because I saw the need to connect with others who are going through a similar journey in their life. We are also the sponsors of Invisible Illness Week.I witnessed a lot of people who were very bitter and frustrated because they felt so alone and invalidated in their pain. Some people even had spouses who questioned whether the illness existed at all.

But I also heard from family members, caregivers, doctors, churches, etc. who really did want to know how to communicate better with those who had a chronic illness. They tried to say the right things, but it was usually the wrong thing, and so they ended up just withdrawing from the relationships.

When illness and pain is invisible it can make it extremely hard for healthy
people to grasp the significance of how much it changes one’s life. It’s easy
for one with illness to become bitter when the people they love the most may
not even believe the illness exists or that it’s being embellished. It’s all
very sad, and I felt more communication was necessary.

People I know have explained this kind of thing to me before. It does sound familiar.

LC: It does sound familiar, doesn’t it? Even those of us who would say we cope
pretty well with a chronic illness still have moments when our frustrations
can get the best of us. It can be as simple as legally parking our car in a
handicapped parking spot and someone walking by gives us “the look”
of skepticism. Or maybe one of our dearest friends innocently asks, “So,
you must be feeling all better now, right?” There is a big difference between
being sick and having a chronic illness and most people don’t grasp that difference.

This is what motivated you to begin an invisible illness week? To increase the communication about all of these issues and emotions involved in living with an illness or pain that no one can see?

LC: Yes, I saw such amazing people who survive against all odds and still had
hope and faith. I wanted to give them an opportunity to encourage others who were going through depression or hopelessness.

It really doesn’t matter what illness we have, where we live, what age we are,
how long ago we were diagnosed, etc. The fact that most of our illnesses are
invisible and not seen by people gives us a lot more in common that most of
the physical symptoms of our specific illnesses ever could.

What illness do you have, Lisa?

LC: Rheumatoid arthritis is my main disease I struggle with. I was diagnosed
in 1993 at the age of 24. A few years after my diagnoses I started having symptoms of fibromyalgia and was later diagnosed with that. Unfortunately, I’ve never experienced any kind of remission that all the doctors hoped for, so the last sixteen years have been a real challenge. I know I could be worse off now and that in some ways I’ve been very blessed, but I’m also going through the emotions of my illness becoming more visible. My illness isn’t just painful every day now, but it’s hard to do dishes or drive because my hands and feet are becoming more and more deformed. I take a lot of medications that have slowed the disease progression down, but I’ve been in a new season this last year and have many surgeries in the near future.

I heard that you type with just a few fingers.

LC: Yes. I use about 3 fingers and my 2 thumbs. I have a voice program but
I usually want to talk too fast and it can’t keep up.

09_blogging-badge2How can people get involved with Invisible Illness Week and find out more information?

LC: I’m so glad you asked because just by getting involved in helping us spread the word, like by reading and sharing about this blog, is one way to be part of our grassroots effort. I hope its rewarding for people to know that they
are making a difference just by introducing others to the virtual conference.
Everything can be found at our web site National Invisible Chronic Illness Awareness Week , including some fun items like buttons, bumper stickers, tote bags, pins, and silicone bracelets that say, “Invisible Illness, Visible Hope.”

This year’s theme is “A Little Help Gives a Lot of Hope.”

We are also accepting blogs from people to be featured on our site as a guest
blogger. And we have a place to sign up to commit to blog on the topic of invisible illness on one’s own blog. You can join our cause on Facebook and share it with others, tell people about our video, our twitter facts about illness, things like that. Tell your doctor, counselor, pastor, colleagues; we have brochures available too.

Some people call their local newspaper and share about the week, their support group, or their illness experience. Since it’s listed in Chase’s Annual Events journalists can tie in the personal story with the annual event.

Has social media made a difference in how you have been able to spread the word about Invisible Illness Week?

LC: Absolutely. Exponentially! For example we’ve done a series of tweets on
20 things not to say to a chronically ill person and 20 things to say. Our twitter hashtag is #iiwk09 to find Invisible Illness Week tweets easily. A lot of interesting conversations have been spurred by these tweets. Be sure to follow us @invisibleillwk on Twitter!

Over 1800 people have joined our cause on Facebook. We’re giving away prizes to people who blog and tweet on the topic.

We both know that there are thousands of people with illness who feel desperately alone and think no one possibly understands what they are going through. What would you tell these people?

LC: Truthfully, if I could I would just sit beside them and give them a gentle
hug. I struggle with the ability to sit and not say anything, as I typically
want to start problem-solving immediately. But I know most people feel that
no one is ever willing to truly listen to what they are going through and all
of the emotions involved with it. They don’t have anyone to talk to or be vulnerable
with.

Secondly, I would want to validate that the feelings that they are experiencing that no one understands–well, it’s true. Unfortunately, their experience is unique and no one can truly know what it’s like to be in their shoes. Illness can be an extremely lonely event. That said, though the illness may be a lifetime event, the isolation doesn’t need to be. There are a lot of ways to build relationships with people who do understand more than they may expect, they just have yet to be discovered. If you are unable to drive to a support group, there are many online groups where you will find comfort. The social network I began is at Rest Ministries Sunroom and I recently started Illness Twitters in order to connect people who twitter about illness or health issues.

And lastly, since my faith is in the Lord, I would want them to know that regardless of what negative experiences they’ve had with churches or Christians, they may want to give God a try. He can give comfort that we just cannot get from any person. And they can still have God’s “Plan A” for their life. The illness hasn’t messed it up and bumped it down to “Plan B.” I know
that sounds cliche, but I hear stories of this every day and have found it myself to be true.

You have a book out that gives people ideas about how to help a chronically ill friend, don’t you?

beyond-cassroles-bookLC: I do. It’s called “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” It’s actually a very helpful book because even though I wrote it, I still refer to it frequently for fresh ideas on how to encourage someone who is hurting. Too often I get stuck in the rut of not being able to think of anything other than another meal. Food is a nice gesture, but there are so many more creative and memorable ways  to show someone you care. We also have cute little JOY gift certificate cards that you can give a friend when you are offering to do something for them. JOY stand for “Just Offering You” and one
can fill out what they are able to offer (errands, laundry, taking your child
for a play date, etc.) and when the best time is for them to volunteer to help.

What a great idea. It seems like it would be easier to accept help if it was in the form of a gift certificate.

LC: Yes, that is the idea. Groups like a support group or a women’s ministry
will find these perfect, but they are also nice for anyone who wants to help
a friend and say, “Here is what I can do to help and a good time for me.”

Thank you again for joining us today, Lisa. Thank you for organizing Invisible Illness Week. I know with your own health issues and that you are also a wife mom it can’t be easy.

You are right, it isn’t, but its more than worth it! The people I meet or
email each day keep me going and I have a husband that is incredibly supportive.

I hope your readers will head  on over to National Invisible Chronic Illness Awareness Week and let their friends know about the free 5-day virtual conference. Its going to be a great time!

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HopeNotes for July 22nd is Available for You!

08topimageOur July 22nd edition of HopeNotes is now available to read! And don’t miss the supplemental posts that our editor makes throughout the week at her blog under “Hope Notes News.”

Doctors Try to Ease Financial Worries of Chronically Ill

With the rising costs of medical care, loss of jobs and more I was glad to see how doctors are personally trying to help out this stress.   Sandra Bodman of The Washington Post, writes about this in an article, “Doctors trying to ease their patients’ financial pain”

Doctors are encountering more patients struggling to pay for care. Some doctors have responded by selectively cutting their fees or devising novel payment arrangements; others have taken a harder line on billing and are sending more overdue accounts to bill collectors.

Although groups such as the American College of Physicians do not specify how much charity care members should provide, many doctors say they feel a responsibility to help strapped patients, particularly those with whom they have long-standing relationships. Some say assisting patients pays dividends in the form of loyalty, which will benefit them once the economy recovers. For others, such efforts may stem an exodus of consumers at a time when elective procedures and visits to doctors’ offices are down.

So far, none of my doctors have volunteered to lower their prices, but I have not expressed the need or expectation that they would. Most of my doctors, I believe, are struggling financially themselves.

Regarding those with chronic illness, the articles goes on to address this, explaining one doctor’s solution for now:

Family physician H. Lee Adkins of Fort Myers, Fla., recently launched a novel plan to counter the growing no-show rate among patients with chronic illnesses: a $75-per-month fee that entitles patients to a basic package of services including more than a dozen office visits per year, simple lab tests and many vaccinations. Patients are required to sign a one-year contract. Why $75? “That’s the same amount people spend on a monthly cable bill,” Adkins says.

What has been your experience?

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What are Your Rights to Your Health Data Information?

Have you ever had difficulty getting your health records? Does the idea of your health records being able to be accessed digitally scare you that anyone with the right access information could know all there is to know about your data? www.HealthCataRights.org says they “serve as the portal for those who wish to endorse and support these rights.”

The organizers of HealthDataRights.org include doctors, researchers, software developers, writers, entrepreneurs, health economists, and many others who share a common goal of greater health data availability.  They launched their web site just June 22, 2009.

Their web site states, “Many of us have personal and family experiences with the health care system that have convinced us that more openness and accessibility to health data about ourselves or loved ones leads to better, safer, and more effective care. Some of us have seen clearly how restrictions on health data and medical records can lead to great pain and suffering—needlessly, in most cases. There is no specific political or economic agenda or affiliation. This is about people becoming more engaged in their wellness and health, and about the notion that access to one’s own health data can be empowering.”

The Health Data Rights are as follows. You can endorse your support at the web site.

  1. Have the right to our own health data
  2. Have the right to know the source of each health data element
  3. Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
  4. Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

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Health Care Reform – Just Checking In

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Some of you may be on top of all the conversation that is going on politically regarding health care coverage. I should be. . . but I’m too busy going to and from doctors appointments and figuring out what bills to pay and what deductibles have been fulfilled to spend time listening to promises that are being made that will impact my life significantly.

According to ABC News/Washington Post poll, only 53 percent of Americans approve of Obama’s handling of health care while 39 percent disapprove of it, up from 29 percent in April. An interview with President Obama and Diane Sawyer will air June 24, 2009 on “Good Morning America” at 7:00 a.m. ET or Watch ABC News Primetime: Questions for the President — Prescription for America Wednesday, June 24, at 10 p.m. ET.

If you’re like me and you’ve not yet taken a moment to catch up with what is being said I wanted to at least provide you with a few links of interest.

June 15, 2009 the president spoke at the Annual Conference of the American Medical Association.” You can read the White House transcript about medical reform here. Part of it says,

“I know that there are millions of Americans who are content with their health care coverage — they like their plan and, most importantly, they value their relationship with their doctor. They trust you. And that means that no matter how we reform health care, we will keep this promise to the American people: If you like your doctor, you will be able to keep your doctor, period.

The Senior Vice President of the Christian Medical Dental Society, Gene Rudd, MD, says,

The question is not ‘whether reform,’ but ‘what reform.’ Current trends in healthcare are unsustainable. Reform must come. I wish it had welled-up from within the medical community rather than government. Government imposed reform may be the consequence of our neglect. But government-controlled reform troubles me. These questions explain: Will government-reformed healthcare be more compassionate? Less complex? More efficient? Ethically guided? You get the point.

I find it disingenuous when some claim the government will produce a system that has 1) coverage or all, 2) higher quality and 3) lower costs. The first two are reasonable and laudable goals, but I doubt there are sufficient savings to offset the costs required to provide quality care for all.

President Obama has explained how no insurance plan would be able to “cherry pick” who they cover, denying coverage to those who have a pre-existing conditions–but he has yet to tell us exactly how this would be enforced.

Here is one woman’s story about her battle with diabetes and health care coverage.

I know sometimes this can be more depressing than we want to hear. Sometimes it’s best to let it all play out, but keep your ears open so you know when to fight for what you believe in. If you have some links or new stories of interest on this topic, please leave them below so we can all be best informed.

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