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!]

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

Caregivers

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!

Inevitable

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.

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!

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?

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.