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!

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.


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


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.

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!

Monday, May 18, 2009

Health Insurance

I recently did battle (5 phone calls, 10 hours, 3 letters) with my health insurance company. I did win and can continue to get my medication locally and keep all my prescriptions at the same pharmacy, which is a wise thing to do. If you find yourself in a struggle with your insurance company you will want to do several things.

1. Keep a written record of each and every phone call including day, date, time, duration, who you spoke to and what the responses were.
2. Follow up.
3. Ask for a supervisor. Write down the name and outcome of the conversation.
4. Follow up.
5. Ask for a case manager for your probelm. Write down the name and outcome of the conversation.
6. Follow up.
7. Send or fax letters and follow up.
8. Always restate the problem and offer logical solutions.

Here is my appeal letter:

I am writing to request a modification in how I receive my Cellcept specialty medication. The new required arrangement through Specialty Pharmacy has a significant change of putting my health and life in jeopardy.

I am requesting that you accept one of these three solutions:
1. Permit me to requiest a refill when my current prescription in 50% used.
2. Or permit me to purchase Cellcept out of network and file for reimbursement.
3. Or permit me to obtain a 90 day supply each time.

On Friday, March 13, 2009 I received a letter from United Healthcare dated February 27, 2009 stating that as of April 1, 2009 I would no longer be able to obtain my prescription for Cellcept from Bioscript, the last specialty pharmacy that United designated, but must instead use Prescription Solutions.

I take Cellcept for lupus nephritis. There is no cure and I will be on this medicaiton for life.

According to Prescription Solutions:
  • I can receive this medication by United Parcel Service, and it must be signed for.
  • I can receive this medication via United States Postal Service and it will take 7 to 14 days after the refill is called in before I will get the medication.
  • I can only get a 30 day supply.
  • I can only request a refill when the medication is 75% used up.

The problems are:

  • I have an erratic work schedule and am rarely in the same place two days in a row, making it impossible for me to be certain that I will be present to sign for delivery of the medication. Under my HIPAA protections, I choose not to disclose my condition. Forcing me to receive my medications at the work place can easily violate this right, as regular monthly deliveries will raise questions forcing me to disclose or be dishonest with my employers. This is not an acceptable option. I live alone and my relatives all live out of state. The office in my complex refuses to accept packages for residents. Leaving it outside is dangerous because of the possiblity of theft and the brutal heat of Florida possibly reducing the efficacy of the medication which allows me to keep my own kidneys.
  • If I can only request a refill 7 days before I am out of medicaiton and it takes 7 to 14 days for the medication to come through the USPS, I am at risk of being without the medication for one week of every month. Without this medicaiton, the lupus nephritis will worsen and can lead to dialysis, which is far more costly than accomodating my request.

On Friday, March 13, 2009 the representative with whom I spoke from Prescription Solutions informed me that Cellcept was only available through specialty pharmacies and that a regular pharmacy like Walgreen, Wal-Mart and CVS did not even carry it! I got my Cellcept at Walgreen for 5 years! It is unacceptable for your employees to fabricate information.

On Monday morning, March 16, 2009 I spoke with Corey (Cory?) in your Rapid Resolution who informed me that I would have to file an appeal which could take up to 30 days. I can't wait that long and said so. I was told that I could file a quick appeal verbally and that she would do that. She also said that I would be notified by telephone within 48 hours. I heard nothing on Wednesdy, so I called on Thursday, March 19, 2009.

Today Renesha tolde me that the appeal was rejected because there was no information and that a letter had been sent on March 17 to inform me of that fact. I asked why I had not received the promised phone call informing me about the status of the appeal. Renesha informed me that United does not call. Renesha told me to file a written appeal and that it would take 30 dyas. Of course, several days were already wasted because of Coy who, like the person in the pharmacy, created information that was not true.

Renesha gave me the number to which I will be faxing this appeal. She also indicated that I would have a response within 72 hours, which, given the weekend, translates into a response by the close of business on Thursday. I confirmed this with her several times.

Stress is the single biggest factor in causing systemic lupus erythematosus to flare. The fiasco in trying to resolve this issue regarding my medication has been extremely stressful and has taken hours and hours of calling. I have been told repeatedly that nothing can be done. My health insurance company, who I would like to believe has my best health and wellness at heart, particulary since doing so will minimize my used of insurance and resources, chooses instead to put me in a position of having to worry every single month about whether or not my medication will arrive and puts me in jeopardy of a lupus nephritis flare which can have grave consequences.

Please consider the three options outlined at the beginning of this letter. I look forward to your telephone response on Thursday, March 25, 2009.

[Note: They never called. First I received two rejection letters. Then a letter dated April 3 and signed by a senior pharmacist arrived informing me that I could continue to use the same pharmacy I had been using. The next month, the drug went generic!]

Sunday, May 10, 2009

The Plunger List

At my darkest time with lupus, I would fall asleep hoping that I would not wake up in the morning. When I kept waking up morning after morning, realizing that I was still here, still sick, still in pain, I began thinking of ways to hasten the process. I thought about putting on a huge pile of clothes and jumping in the deep end of the pool in the apartment complex where I lived. Pretty scarey! I still had enough presence of mind to realize that I needed to do something ASAP before I thought this was normal! So I took myself to a psychiatrist and that was a disaster. I left him and left the prescription behind. When I returned a few weeks later, he commented that I looked so much better and that the meds must be working. I asked him to check my chart and when he did, the prescription fell out. He was puzzled. I gestured for him to come close and hissed, "I got a huge PLUNGER and got my head out of my butt." I figured that if I was going through this, then others must have gone through it too, and some of them must have written. Having no money, I trotted off to the public library and read and read and read. So instead of a "bucket list" I am offering you my "plunger list."

The Language of Letting Go-Melodie Beattie
The Relaxation Response-Herbert Benson
Beyond the Relaxation Response-Herbert Benson
Chronic Fatigue, Fibromyalgia amd Other Invisible Chronic Illnesses-Katrina Berne
Guilt Is the Teacher, Love is the Lesson-Joan Borysenko
Minding the Body, Mending the Mind-Joan Borysenko
The Power of the Mind to Heal-Joan Borysenko
Being Sick Well-Jeffrey Boyd
Intoxicated by My Illness-Anatole Broyard
Mind Your Heart-Aggie Casey
Anatomy of an Illness as Perceived by a Patient-Norman Cousins
Sick and Tired of Feeling Sick and Tired-Paul Donoghue and Mary Siegel
The Immune Power Personality-Henry Dreher
The Chronic Illness Workbook-Patricia Fennell
The Will to Meaning-Viktore Frankl
Woulda, Coulda, Shoulda-Arthur Freeman
Stigma-Erving Goffman
Illness and the Art of Creative Self-Expression-John Graham-Pole and Patch Adams
Mind Over Mood-Dennis Greenberger and Christine Padesky
Anatomy of Hope-Jerome GroopmanThe Measure of Our Days-Jerme Groopman
Miracle of Mindfulness-Thich Nhat Hanh
Peace Is Every Step-Thich Nhat Hanh
500 Tips for Coping with Chronic Illness-Pamela Jacobs
You Can't Afford the Luxury of a Negative Thought-John-Roger and Peter Williams
Coming to Our Senses-Jon Kabat-Zinn
Full Catastrophe Living-Jon Kabat-Zinn
Wherever You Go, There You Are-Jon Kabat-Zinn
Minding the Body-Ellyn Kaschak
On Death and Dying-Elisabeth Kubler-Ross
Living a Life that Matters-Rabbi Harold Kushner
When Bad Things Happen to Good People-Rabbi Harold Kushner
Stress Relief and Relaxation Techniques-Judith Lazarus
Living a Health Life with Chronic Conditions-Kate Lorig, et al
The Healing Mind-Paul Martin
A Delicate Balance: Living Successfully with Chronic Illness-Susan Milstrey-Wells
Care of the Soul-Thomas Moore
The Complete Guide to Your Emotions and Health-Emrika Padus
Opening Up: The Healing Power of Expressing Emotions-James Pennebaker
Writing to Heal-James Pennebaker
Molecules of Emotion-Candace Pert
We Are Not Alone: Learning to Live with Chronic Illness-Sefra Kobrin Pitzele
Taking Charge: How to Master the Eight Most Common Fears of Long Term Illness-Irene Pollin with Susan Gollant
The Chronic Illness Experience-Cheri Register
Overcoming Indecisiveness-Theodore Isaac Rubin
Stress without Distress-Hans Selye
365 Presciptions for the Soul-Bernie Siegel
How to Live Between Office Visists-Bernie Siegel
Love, Medicine, and Miracles-Bernie Siegel
The Art of Getting Well-David Spero
After Any Diagnosis-Carol Svec
It's Not All inYour Head-Susan Swedo
You Are Not Your Illness-Susan Noble Topf
Spontaneous Healing-Andrew Weill

Sunday, April 26, 2009


Last week I was at a gathering of people who all shared concerns about the problems of chronic illness. Most of them were the caregiver types. As I listened, I began to wish that I could wave a magic wand and turn the gathering into a Codependents Anonymous meeting! These were wonderful, nice, compassionate and caring people. And sometimes that's the problem.

One after another they mentioned the stress that goes along with being a caregiver. (And yes, caregiving can be stressful.) Most of the people who were on the receiving end of care were hardly invalids. They could do most things for themselves, but the caregivers worried tha the patients did not take care of themselves, didn't take their meds, didn't comply with their treatment plans or (fill in the blank).

I reflected on my own experience with chronic illness adn the reactions of my family when I was at my worst. Caregivers try to fix us. They stress out when they can't do that. The worry that we'll die. (Everyone dies, by the way, even caregivers.) But what they don't realize is that we, the sick ones, pick up on their stress and frustration. Then we get to feel guilty because we are the source of their distress. And there's another part. As long as caregivers do for us what we are capable of doing for ourselves, we are enabled not to take care of ourselves.

Chronic disease brings loss of control. Caregivers "should" on their sick loved ones. The sick folks "should" on themselves. Doctors "should" on patients. "Shoulding" is a way of trying to gain control. Personally, whenever anyone "shoulds" on me, I do just the opposite!

What is there to do? I think there are two starting points. The first is good, honest communication. The second is to walk in the other person's shoes at least mentally. It's a good start!

Sunday, April 5, 2009


Last week, a long time friend lost her battle with breast cancer. She was 47, ten years younger than I am. My own mother died of breast cancer when she was just 42. And this winter I had a “questionable mammogram” requiring two rounds of additional imagining. Of course, I did a lot of reflecting on all kinds of things-far too many, and far too personal to share tonight.

My 2003 lupus adventure was life threatening. Thanks be to God, I am still here. I know that having systemic lupus doubles my risk for cardiovascular events and that the chemo I take to keep my own kidneys increases my risk of lymphoma. The history of cancer is strong on my mom’s side of the family. But do you know what? 99.44% of the time I don’t think about those things. Instead, I strengthen my resolve. I do my best to eat well, exercise (ARRGH), meditate and practice yoga in the hope of maximizing the amount of time that I can be functional and independent. But I know these things won’t make me immortal. The comedian Red Fox said that there are going to be a lot of embarrassed health nuts in nursing homes dying of nothing! I would love to be like my great grandma Babcha who, at the age of 94, simply went to sleep and never woke up.

Regardless of how we go, none of can escape dying. So we have a choice. We can waste our present moments obsessing about it, or we can live as fully as possible in the present. Or we can ignore the inevitable as long as possible, acting as if we have all the time in the world when all we have is this second. Either way, all we really have is now and we get to choose what we do with it.

Sunday, March 29, 2009

Golden Rule

Do unto others as you would have others do unto you. Love your neighbor as yourself. But there is something we often miss in these two statements. Both assume that you love yourself FIRST. It’s so easy to push beyond our limits when we do it in the name of love and care. Take a look at your life right now. Now, pretend that what is happening in your life-your chronic illness, your trials and tribulations, your stresses-are happening to your best friend. What advice would you give them? How would you help them? What stops you from treating yourself in that loving manner? A sense of responsibility? Inability to see options? Rugged individualism? Pride? Unreasonable expectations? Noble self-sacrifice? There are always choices if you are willing to look beyond your preconceived notions about things.

Be kind and gentle with yourself. Love yourself so that you will be able to love your neighbor!

Sunday, March 22, 2009

Disaster Movies

Who needs to pay to see disaster movies when we have created an entire library of them in our minds? There are two types of movies in this genre. First there is the Retro Disaster Movie. In this one, we relive things-conflicts, nasty medical procedures, hurts, failures. Second is the Future Disaster Movie. In this one, we imagine potential horrific events. Whether we are viewing the Retro or Future versions, the result on the body is the same. STRESS! And stress makes everything worse. Stress kicks the immune system into high gear, raises blood pressure, releases sugar from the liver into the blood stream, tenses muscles, and diverts blood from organs to muscles. Our own disaster movies put us in a constant state of stress. Stress causes disease. Stress makes existing diseases worse.

Are you wondering why there is no Present Disaster Movie? When we are busy watching the Retro and Future Disaster Movies there is no time to see what is really happening now.

What are your disaster movies? How many times have you watched the same movie or variations on that movie? What would you rather be watching? Why don’t you do that now?

Sunday, March 15, 2009

Circle of Life

Last October, I resigned from my inner school by fax, never to return. I love inner city teaching. I had a great year the year before. But changes in administration and support caused things to deteriorate in an already fragile situation. I had to decide whether I should keep on no matter what or do what I needed to do to keep my lupus at bay. I chose to leave. And it was hard to do.

Last weekend, I was in a Broadway Revue at the high school that I also served. On Friday morning, our feeder schools came for a special performance of the show. I saw my middle schoolers from the school I left coming in. My heart sank. I never said good bye to them or gave them an explanation. Sometimes you don’t do things well, you just do them any way you can in order to survive. I hid out back stage, not knowing exactly how I wanted to handle this and knowing it was inevitable. A nun left that school over the summer and went back to teaching at the high school where I was also working. She came back stage to tell me that the kids saw me, asked to see me, but that she told them to wait because I was getting ready to perform.

At intermission, I bit the bullet and went over to the kids. All but two hugged me over and over, asking why I left asking me to come back. I put on my best smile and told them that life brings changes. I reminded them that they were near graduation and the changes in their lives would lead them to move on, too. But, to tell the truth, I missed them, too!

Only two girls did not greet me. One had some significant emotional problems, so I was not surprised. The other was my “straw that broke the camel’s back.“ On my last day, two sixth grade girls got into a horrible, violent cat fight in the cafeteria. I tried to separate them. Another teacher joined me in trying. Finally, a male parent had to join in. I got the one who started it. She was still flailing and kicking. And I ended up being the recipient. This was the girl that ignored me that morning.

I took a deep breath, regrouped, and played the second half of the show. But that school was not done with me. This afternoon a woman appeared in the support group that I facilitate. She looked terribly familiar but I could not place her. After a brief exchange, I realized that she was a volunteer at that school who was part of my stress last fall from day one. I know she meant well. But she was clueless about how the school functioned and what worked. Honestly, I was less than pleasant with her when I worked there. OK, I yelled!!! (Suppressed feelings are not good for you, you know!)

And now here she was presenting herself at the support group. I could only imagine how much courage that took on her part. Or just how isolated she felt with her lupus. I was a little uncomfortable, too. Who wouldn’t be? She was diagnosed just before I resigned. She wanted to tell me, but our relationship was so contentious that she didn’t. I am glad she came today. She was an asset to the group. She no longer has the energy to volunteer in that school. How wonderful is it, that we could put that experience behind us and deal with the larger problem of living with lupus.

I don’t know what I think about all of this. From where I am sitting right now, after a 12 hour day, the only thing that comes to mind is living in the present. We can’t change the past. We can’t control the future. These people represented some very difficult decisions for me and some dark times. I am sure I represented the same things for them. But in some wonderful way, without words or analyses or apologies or laying of blame, we were just human together-me and the students, me and this fellow lupus patient. And it’s all good.

Sunday, February 22, 2009

Journaling Part 1

Developing a chronic illness and then receiving a diagnosis along with the information that there is no cure. You will be stuck with this as long as you live, or at least for a very, very long time is traumatizing. Invasive medical tests and procedures are traumatizing. Stigma, loss of identity and self-esteem, and a myriad of unpleasant emotions are all companions of chronic illness. You may be inhibiting the expression of this trauma because you are afraid of acknowledging it or because you are afraid that you will alienate people who have to listen to you. In Opening Up: The Healing Power of Confiding in Others, James W. Pennebaker states that, “actively holding back or inhibiting our thoughts and feelings can be hard work. Over time, the work of inhibition gradually undermines the body’s defenses. Like other stressors, inhibition can affect immune function, the action of the heart and vascular system, and even the biochemical workings of the brain and nervous systems. In short, excessive holding back of thoughts, feelings, and behaviors can place people at risk for both major and minor diseases.” You certainly don’t need another disease and you don’t want to make the one you have worse. But you don’t want to drive people crazy as you tell and retell ‘your story.’ You may think that no one wants to be around a sick person. But as you just read, one way or another, the story and the feelings that accompany it have to be expressed. What can you do? You can journal. It’s just as effective as telling, and maybe even more so.

Your journal can be written or you can speak it into a tape recorder. Either way, expressing what is on your mind can help you clarify your thinking and have a profound influence on the way you see yourself and the impact of the disease on your life. When you talk, or write, about the trauma of chronic illness you stop the stress of inhibition and gain insights into yourself.

Sunday, February 15, 2009


Chronic illness robs us of our identity, hopes, and dreams. Once the diagnosis is pronounced we will never be the same again. Susan Sontag in her book, Illness as Metaphor, writes that when we are diagnosed we become citizens of the land of the sick, only visiting the land of the well on a passport. We are foreigners in their world.

Once we identified ourselves by our work, relationships and hobbies, now we identify ourselves as having the Disease. The Disease is the last thing on our minds when we fall asleep and the first thing on our minds when we wake up. Our hopes and dreams for the future are dashed. Our identity is gone. Without that identity, we are strangers to ourselves and to the people with whom we had relationships. We feel like strangers because we are strangers.

But the loss of identity gives us an opportunity to create a new identity, a new normal. Stripped of our identity as human “doings” we can learn to be human “beings.”

Sunday, February 8, 2009

Conspiracy Theories and Snake Oil

Most of us are willing to tolerate short term medical interventions and courses of treatment when we know there is an end in sight. But, folks with chronic diseases are usually on some kind of treatment regimen for the rest of their lives. They may not have a death sentence, but they sure do have a life sentence! Is it any wonder that they turn away from the bearers of bad news and go off in search of magic bullets and natural cures?

Popular advertising (print, television, infomercials, and free sample distributors in warehouse clubs) for many “natural products” on the market generate mistrust in the medical profession. The commercials want you to believe that the medical establishment has secret information that they hide from sick people in order to make themselves rich. The theory has become so prevalent, that many people actually take it to be truth. It’s time for a reality check! The vast majority of doctors became doctors because they wanted to help people, not harm them by hiding cures. The supposed “natural cure” advertising implies that the drug companies and doctors merely want to get rich at the expense of suffering patients. Ask yourself, what are the sellers of “natural cures” doing? Have you ever looked into their multi-level marketing schemes? What is the evidence for their claims? Were there true scientific studies done? What methods were used? Where are the results published? Let’s not forget that hemlock and arsenic are natural too, but they can kill you, just ask Socrates! And IF these cures worked, why are so many people still sick and suffering? Why are millions of dollars being spent on research? I was approached by a seller of some very expensive berry juice-$25 for a quart bottle-who claimed that it cured a whole range of chronic conditions. His proof? There was something on Yahoo! A supposed doctor contacted my office claiming that he had a neuropeptide vaccination that would cure lupus. It only cost $250 a shot and might take two to do the trick. Of course, it wasn’t approved for use in this country and people should call his cell because he didn’t maintain a physical office! I could post something on the internet claiming that cheesecake cures cancer but that wouldn’t make it true!

Herbs, vitamins and micronutrients are often touted as cures. Think about it; as a society, we take whole food in its natural state, fragment it, refine it, then we fortify it to put back what we took out. Wheat is a perfect example. We remove the fiber and bleach the wheat to make white flour. Then we add fiber to our water or yogurt to keep our bowels moving. We process the vitamins out of food and then pay lots of money to take the very same vitamins in pills. Why not eat the whole food in the first place? A word of caution: ALWAYS discuss any herb, vitamin or supplement with your doctor BEFORE taking anything. Some of these “natural” cures can make your disease worse or have a negative interaction with your medications.

What can you do to help yourself? Good, whole food is the best “natural cure” you can give to your body. Eat a healthy, balanced diet. Strive for one that is low in fat, high in fiber and avoids too many processed foods. Get regular exercise, even if all you can do is walk or swing your arms for a few minutes. Talk to your doctor and develop a treatment plan together. Remember, there are no magic bullets. Living your best life takes work!

Sunday, February 1, 2009

What if?

I love learning new things. This weekend I had the chance to go to a 10 hour workshop on using video in religious services. My two companions were taking the audio workshop. Early Saturday morning, we made our way to the breakfast buffet. The sausage tasted a little funky, but I thought maybe it was turkey sausage and that accounted for the strange taste. I had a few bites, asked one companion to taste it, and we agreed maybe the sausage needed to go into the circular file! About an hour into the workshop I felt dizzy and headachy and nauseous. I put my head down. Someone asked how I was feeling and I muttered that my head hurt and put my head down again. My team went out to make their 30 second commercial to get people go come to a church work day but I stayed behind, head on the table.

By the time we got to break it was pretty clear that breakfast was on its way back up. Mission accomplished, I felt a tad better but decided to nap in the car for half an hour and then return to the workshop. The leader asked how I was, and I said cheerily, “Well I lost my breakfast and think I will live.” Later, when the groups were editing, the leader dropped by where I was sitting and complimented me on “being a trooper.” I replied, “Well, I have lupus and people with lupus and other chronic diseases are used to feeling lousy, so we just keep going. After all, the alternative is to give up and I am not about to do that.”

When I was at my sickest, I was lupus. Linda ceased to exist. Slowly, over a period of six years, I created a new identity. A small part of that identity includes lupus. I have become something of a one woman lupus awareness campaign. But this was different. I realized that maybe lupus has a little bigger place in who I am that I would like to admit. Tonight is Super Bowl Sunday but I am watching a House Marathon. Football is not my cup of tea, even though Super Bowl is happening just 2 miles from my apartment in Tampa. One of the doctors told a patient that she was letting her illness define her. These two things-what I said to the workshop leader and that line from House-made me stop and think. What if my or your disease got taken away today? How would you define yourself? We struggle through all these stages of loss and grieving to come to a place of acceptance and even transcendence when it comes to disease. Knowing that our condition is forever, we find ways to integrate it into our lives and personalities. I suspect that if we were miraculously cured, we would have to rebuild our identities yet again.

Sunday, January 25, 2009

Filling the Void

Chronic illness leaves huge holes in our lives. Some of us can’t work. Some of us can’t do all the things we used to do for friends and family. Some of us have to give up living on our own. There are a thousand little losses. Days that were once spent working, volunteering, and interacting with others turn into days spent on the couch or in bed wondering if we are worth using the oxygen we take from the air. We are left wondering who we are and why we are here.
Nature abhors a vacuum. The empty spaces must be filled. Our losses are our losses. We can’t change that. What we can change is what we choose to fill the void, to fill the empty places in our lives. Chronic illness does not excuse us from being members of society and it does not excuse us from giving to others. Mark the loss, grieve, and move on as soon as possible. Instead of being “stuck” with your old life, you have a chance to pick and choose what you will put into your life and that is an amazing opportunity!
Why are you sitting here reading? Go do it now!

Sunday, January 18, 2009


Whether or not people profess faith in God or follow a spiritual path, they find themselves trying to bargain their way out of desperate situations. The old adage, “There are no atheists in fox holes” could easily apply to chronic illness. One of the stages of grieving, and remember we are grieving for our own losses, is bargaining. Whether it is bargaining with God as we know God or bargaining with something as vague as the cosmos, people will try to bargain their way out of the illness. The process starts when the patient looks back at his or her life and decides that their less than perfect life style or attitude is the cause of the sickness. The next step is making promises about future behavior in return for relief from the sickness. Bargaining sounds something like this, “If I get better (or You make me better) I promise I will (eat more vegetables, stop kicking the cat, be a pleasant person,_____). Bargaining makes some faulty assumptions. The first is that we caused our illness. The second is that our illness was inflicted on us as some kind of religious or cosmic punishment. The third is that whoever we are bargaining with will remove our sickness the same way they gave it to us.

Whether or not you contributed to your illness is only important in that you have learned to stop doing that. What happened happened and nothing can change it. While prayer and meditation can be very helpful in managing chronic illness, playing “Let’s Make a Deal” is not. Fortunately, the bargaining stage usually doesn’t last very long. Instead of spending your energy figuring out what constitutes an enticing offer, put your energy into something you know will pay off and make a plan to manage your disease.

Sunday, January 11, 2009


(Yesterday I turned 57. How cool! I am happy that I am looking down at the grass instead of up at it. Six years ago next month, the doctors told my sons not to expect me to live. I got calls from people I did not ever want to talk to and was baffled, but morphine does weird things to your brain. They didn't tell me that I was not supposed to live, so I lived! And as I begin a new year of my life, I am glad I am here to share this with you!)
Why do I think so much about dying? Why do I feel like this is the beginning of the end?
Everyone knows that all living things die, including people. Yet somehow we don’t expect it to happen to people we love and we certainly don’t expect it to happen to us. Everyone who is born dies, in fact, we are in the process of dying from the minute we are born. When we feel healthy and vibrant, we simply can’t wrap our minds around our own death. Just like teenagers when they drive recklessly or engage in other risky behaviors, most of us think we are invincible.

In Western cultures, we have sanitized death. We preserve bodies so that visitations can go on for days and burials can be delayed. We remove death from the home and place it in hospitals, hospices and nursing homes. We put make up on the deceased to make them look alive. Visitors can often be heard to say, “Doesn’t he/she look wonderful?” while looking at a deceased loved one. We keep children from knowing about death. Is it any wonder that we generally act as if death will never come to us? In many non-Western cultures, death is a normal part of life. Death is not sanitized and death is not hidden. Ten of the forty traditional meditations in Buddhism have to do with contemplating corpses!

Chronic illness reminds us of our own mortality, not once, as in a heart attack or bad accident, but daily. Aches and pains, medication and limitations, doctor visits and lab tests are constant reminders that our bodies are not functioning as they should. We study each new symptom trying to figure out if this is the beginning of the end. The stress itself makes the symptoms worse and we begin a downward spiral. We become anxious and our muscles tense causing panic attacks and pain. Sleep eludes us and the fatigue makes everything worse. Fear and depression become constant companions.

Contemplating death is not a bad thing, fixating on it is. We will die when we die. All the worry in the world will not add one minute to our lives, but is certainly may shorten them! Rather than spending time crying, “Woe is me,” we can value every moment that we have. What would you want the epitaph on your grave stone to say about you? What would you want your obituary to say about you? What would you want those who are left behind to say about you? Are you living your life right now in such a way that this will be true? If not, what are you waiting for? Chronic illness can be a tolling bell or a wakeup call. It’s up to you.

Karen nearly died from an acute episode with her chronic illness. After coming to terms with her own mortality she purchased a cremation plan and wrote her funeral instructions and service. Karen wants her epitaph to read, “She left the world a little better than when she came in,” and “She squeezed every drop out of life.” She’s still with us and her disease is in remission!

Sunday, January 4, 2009


I started the Christmas Crud early this year, just before Thanksgiving. For most of my life, I got sick on Christmas and stayed sick until Easter or later. I noticed that other people didn’t get sick and stay sick for so long, so I figured I was just flawed somehow. Staying home and resting never fixed it, so I learned to keep pushing. In 2003, however, the annual Christmas Crud got really bad, bad enough to land me in the hospital for 14 days, bad enough to place me on disability for 4 years. And, thanks be to God, bad enough to finally get the diagnosis of systemic lupus erythematosus with major organ involvement. I am in remission now, chemically induced, but I will take any remission I get!

And then came this year’s Christmas Crud. At first, I brushed it off. It got better and worse and better and worse, then it got nasty. Antibiotics didn’t touch it. On Christmas Eve, I sounded like a cat gacking up a hairball and I am sure that disrupted the congregation’s worship, even though I continued to play through the gacking. On Monday, I was truly miserable and for the first time in a long time, I began to catastrophize. I took deep breaths to try and figure out if I had pleurisy or pericarditis again. I watched my urine for bubbles that could indicate a nephritis flare. I imagined the worst and hoped it would not happen.

Here is the catastrophe scenario. The lupus flared, you will lose your jobs, you will crash, your life is effectively over. BAM! Even though I know better intellectually, even though I have learned to use cognitive therapy to ward of this kind of thinking, it crept in. When you live with chronic illness, it’s easy to take every little change in your health and body and imagine that is a bell weather, a sign of the beginning of the end. But awareness can head off this catastrophizing. If you are aware that you catastrophize, then you can be ready and replace your thinking and change how you feel. Plan ahead. Have replacement thoughts ready.

And by the way, I am a lot better now!