Hmm, I’ve not received this issue yet. I need to call my mother to see if she has received it. There was a little problem with her subscription as she found herself receiving two copies of the magazine along with notices stating she needed to subscribe. It did not and still does not make sense because she has subscribed but we are always wondering when the mess will finally hit the fan as we may find ourselves not receiving a single issue of the mag. This is why I hate subscribing to magazines because invariably this kind of mishap happens. Ugh!

Anyway, from what I can read of what’s available online, there are some good articles in this issue of Lupus Now. Of note is the article on “Sharing the Story: Why Awareness Means Hope” by Gerri Miller. In the article, Wendy Rodgers shares her story on being diagnosed with Lupus and how she is going about educating folks. Love this. Though the online version of the article is quite brief, there is a wonderful quote:

To look at Wendy Rodgers, you’d never know she’s lived with the devastating effects of lupus for nine years. She’s experienced myriad serious complications, several hospitalizations, and finally, in May 2009, a kidney transplant. Like many people with lupus, Rodgers doesn’t look sick. With no outward manifestations other than a scar on her arm from all the years of dialysis treatments, Rodgers once brought a box containing 24 different medications to a Medicare office as evidence of the seriousness of her illness. “When you say you have cancer, people understand. But with lupus, how can you show you have joint pain? If you look good, people don’t believe you, because they don’t know.” So Rodgers is doing everything she can to teach them.

Emphasis mine. It’s so true. I cannot count the times people have told me “but you can’t die from lupus” or “at least you don’t have cancer.” The former is obviously wrong because people die from lupus all of the time. The latter is equally wrong in many respects because, like cancer, systemic lupus takes your body down, causes a shut-down of organs, goes from one organ to the next, or, with a compromised immune system due to the medications, you may find yourself susceptible to infection like Lucy Vodden.

As a friend of mine said recently — she is a breast cancer survivor — “cancer and lupus are somewhat similar.” My friend and I have cussed and discussed our war stories as she’s battling cancer and I’m battling my immune system. Her chemo was more intense than mine but we both experienced the same symptoms, the nausea, the overwhelming fatigue, dark nails, hair loss, the metallic taste, and I won’t get into the other things.

During one of our conversations on chemo while sitting at an outdoor coffee shop, a woman walked over to us — another cancer survivor — and asked us if we were cancer survivors too. My friend answered first saying she is a breast cancer survivor, I responded that I have lupus. The woman was puzzled by my answer. “You’re receiving chemo for lupus?” she asked. I told her yes and explained why. I don’t think she ever understood why because, in her mind, chemo is reserved only for those who have cancer. When I informed her Natalie Cole received chemo and radiation treatments for hepatitis C, she really lost it in a whirl of confusion finally admitting “I didn’t know chemo was used for other diseases.”

My girlfriend and I are constantly talking about forming a group to include women with chronic diseases, inclusive of any and all autoimmune diseases and cancer. Not long ago I joined my friend at an impromptu meeting of cancer survivors and when I mentioned my having lupus I quickly became persona non grata. Dismissed, as it were because I, as one woman pointed out, could neither know nor understand what cancer can do to a woman’s body. “You haven’t suffered like I have” she said rather self-righteously. I told her “you haven’t suffered as long as I have.”

She and I finally came to a meeting of the minds and understanding as I explained my personal battles over the years. Education was key because she didn’t know what lupus was, how it affects our bodies, what we go through, the medications and finally, she had no idea some of us must endure the discomforts of chemo as well. When I pulled off my wig to show her my head, she understood that I understood.

The second wonderful article is “Become Your Own Insurance Policy: 6 Ways To Ensure A Better Life With Lupus“ by Mary Dixon Lebeau. Jennifer MacLean was finally diagnosed with lupus in 2008, after 10 years of seeking a diagnosis. Upon learning of her diagnosis she thought about her future and the need for disability insurance. Her article emphasizes the need for health care reform where all can receive insurance despite preexisting conditions: She says:

“I remember thinking I needed to get disability insurance because if I couldn’t work, I would be lost financially,” MacLean says. She applied for various policies, only to be denied at every turn.

“I was told they didn’t want my money. I had lupus, and no one wanted to insure me.” But instead of giving up, MacLean decided to be proactive about her situation.

“I knew I had to do whatever was necessary to stay as healthy as possible,” she says. “I needed to be my own insurance policy.”

We have to be proactive in spite of what is or is not available to us today. In being our own insurance policy, the onus is on us. We must do whatever it takes to maintain our health be that exercise, a healthy diet and as the article states, taking time out when needed. Reducing stress, getting enough sleep even if that means taking naps during the day, and getting help when you need it. Do not suffer in silence. Seek, knock and ask means getting out and doing something.

Fortunately, the article has a wealth of resources and offers some good advice. This one is worth bookmarking or, at the very least, copy down the information though you may feel you don’t need it now. You may need it later.

As wealthy bureaucrats, politicians and lobbyists — with fabulous insurance policies I might add — argue as to whether a public insurance policy should or should not be available and how having a public policy may or may not affect an insurance company’s ability to make money, real people are suffering and dying. Take the case of a woman who is not only the face of lupus, she has now become the face for health care reform.

Nikki White

Nikki White, according to an article in the New York Times, “would have been far better off if only she had been a convicted bank robber.” Why you ask? White had systemic lupus and when she became too sick to work, she left her job and as a result, she lost her health insurance as well. “Indeed, if Nikki had been a felon, the problem could have been averted, because courts have ruled that prisoners are entitled to medical care.”

As noted in the aforementioned article, White too tried to get health insurance and was denied at every turn because of her preexisting condition. White spent months on a letter writing campaign for help. Finally, White “collapsed at her home in Tennessee and was rushed to a hospital emergency room, which was then required to treat her without payment until her condition stabilized. Since money was no longer an issue, the hospital performed 25 emergency surgeries on Nikki, and she spent six months in critical care.”

For White to receive care, she had to show up at the emergency room where, in fact, she did receive great care but that is not what she needed. White needed to be under a doctor’s care. She needed medication that would have avoided those emergency room visits.

When a patient arrives at an emergency room they are often in an acute or chronic condition, one that might have been avoided if the patient had been under a doctor’s care. Emergency room visits are also expensive. In fact, the hospital spent hundreds of thousands of dollars on her. Here’s the rub, while many complain that the “Public Option” is nothing more than socialism or worse, they don’t want their tax dollars going to those “scum bags who won’t work”, etc. — the worse of the mess I’ve heard and I’m sure Nikki White and her family love to hear words like that — you and I will pay anyway in the form of higher premiums.

The cost of someone who is uninsured visiting an hospital’s emergency room is passed on to insurance companies, who then pass it on to employers, who then pass those costs on to you and me in the form of higher co-pays and costs per pay period for our insurance coverage. Take the hit now or take it later. We will take the hit. We are taking the hit.

When Sarah Palin introduced the phrase “Death Panels” referencing the bill or bills in the House and Senate, she failed to tell the truth on what exists currently. The death panels, quite frankly, are currently being manned by insurance companies. They decide who lives and dies. If you have a preexisting condition like the very young Nikki White, you will not be able to purchase a policy. If you cannot afford a very expensive policy — because you are unemployed or underemployed — you will not have health insurance. The insurance companies are basically telling you to go home and die.

This is why many parents today who have sons or daughters with lupus — or other autoimmune or chronic diseases — are looking for creative ways to not name the disease for fear their sons or daughters will not be able to secure health insurance when they are no longer covered by their parents’ health insurance policies. That does not mean the insurance company’s “death panel” won’t dig deeper into the patient’s medical history to find the prednisone, cytoxan, et al and eventually cancel the policy. They will and have done just that.

The article on becoming your own insurance policy is important. In recent articles posted here and on the internet, Vitamin D deficiency can cause a multitude of problems.  As one recent study showed, deficiency in Vitamin D can cause high-blood pressure down the road. Insurance companies could one day begin denying insurance to those who had an immediate family member diagnosed with cancer fearing you too will one day develop cancer. Maintaining a healthy diet or making lifestyle changes can help to avoid what could become an even greater health care crisis. Those who are complaining bitterly against health care reform may one day wish they hadn’t as they, or someone near and dear to them, find themselves in the midst of one horrible health event. Remember, back in 2005, bankruptcy laws were changed and you will be liable for the debts incurred, including those debts incurred during a health care crisis. I saw that one coming.

Nikki White was not fortunate. She became a statistic. In 2006, Nikki White died at age 32. “Nikki didn’t die from lupus,” her doctor, Amylyn Crawford, told Mr. Reid. “Nikki died from complications of the failing American health care system.”

A poignant statement from the aforementioned New York Times article is this:

After Al Qaeda killed nearly 3,000 Americans, eight years ago on Friday, we went to war and spent hundreds of billions of dollars ensuring that this would not happen again. Yet every two months, that many people die because of our failure to provide universal insurance — and yet many members of Congress want us to do nothing?

Millions die here in America every year and the terrorists are our politicians — both Democrat and Republican — lobbyists, special interest groups, insurance companies, pharmaceutical companies and more. At some point we need to look at what we’re doing to each other.

Links:

PostGazette.com:  Amid fight for life, lupus victim fights for insurance.

PBS.com:  Sick Around America — Full show features stories of those who are buried in debt for health care costs.  Show also features a story on Nikki White