Good Days…Bad Days With Maureen Pratt

The first book about chronic illness that I wrote, with rheumatologist David Hallegua, MD, was called “Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life.” This was not the book’s original title; I’d titled it, “Lupus in Daily Life.” But, my very wise editor had a better idea, and I’m glad she made the change.

Indeed, although lupus can be confounding and often-times unpredictable, there are things over which the patient has control, and these things may also apply to people living with other chronic, serious illnesses.

One of the first things I learned is that an attitude of victimhood undermines our ability to find positive, strong solutions to problems posed by illness.  Not to say that sometimes each of us cries, has a “poor me” moment, and wishes life were otherwise. But if that is all we do, all we see in our lives, then finding a way to a more positive life is going to be extremely difficult. How, then, to minimize victim-think and victim-speak?

Knowledge can take us far in understanding our illness and what we can do about it. The first and primary source of this knowledge is, of course, our medical team. We can take charge of the questions we ask during our appointments, the specifics about our labs and exams. We can learn much about the things that might trigger flares and how to avoid them, and the positive steps we can take to maximize the health that remains. We can know the names of the meds we take and what they do (and what side effects to look for).  We can organize our paperwork and our lives so that we can find what we need when we need it.  We can work on our communication skills so that we can be better advocates for ourselves in a medical setting, as well as socially.

Taking charge of our time is another way to minimize a victim attitude. Pour goodness, inspiration, giving, and quality relationships into the precious minutes and hours of a day. Simplify that time, too, and find healthful ways to avoid stressors that you know will aggravate your condition.

We can take charge of what we eat, and help fuel our bodies in a good way. This also extends to the things we fill our minds, hearts, and eyes with – so, the more positive our influences, the more positive we will feel.

We can understand that we cannot control the attitudes and emotions of others (this realization is extremely freeing). So, if someone close absolutely refuses to understand or be compassionate, we can take charge of setting boundaries so that that person does not harm us at a time when we might be most vulnerable.

We cannot control God, however we can take charge of our spiritual lives, the times we spend in prayer and listening to God, and the kind of time we give to deepening our faith. We can invite strength during the times when we feel lowest, and move forward more firmly from one day to the next.

Blessings for the day,

Maureen

When you’ve lived through the sharp flares and relative calms of chronic illness, you begin to understand that nothing is guaranteed. As I’ve experienced recently, sometimes the medications we take to keep some symptoms under control suddenly stop working or cause serious side effects. Sometimes we do everything “right,” and try to take as good care as possible, but the illness has a mind of its own and flares anyway.

The best laid plans….

And yet, in the media and, perhaps, our own circle of friends, there are calls to plan. Plan for vacations, plan for events, plan for retirement, plan for the future.

How do you plan for the future, when the future is unclear?

There are no easy answers to this perpetual question. On the one end of the spectrum, we could plan our lives to the day, to the minute, firmly resolved to do XYZ no matter how we feel. On the other end, we could live as if we’re in an unmoored, rudderless boat that just drifts from one day to the next.

For me, there’s a relatively reasonable middle ground. Like many people, I have dreams, goals, and hopes. I don’t want to give them up because my illness might flare, might restrict me, might become more serious than it already is. But I also have to be realistic, and take into account where I am now inorder to have a future that’s rich with goodness and not simply illness.  I have to first take care of health, and then address the hoped-for future in light of my abilities and lupus status. And, I put everything into the prism and perspective of faith – God does know the future, after all, and He has a will for each of us.

When we think about the future in terms of illness, life can seem mighty scary. But when we think about a future that God is present in, supporting us and wanting what is best for us (even if this means still living with a terrible disease), the future seems brighter. Taking all those “this could happen, that could happen” moments and lifting them up to the Father, then taking cherished dreams and regarding them creatively, one step at a time (the subject of my next blog), can give us the support and relief we need to be more confident as we move forward, even if the future is unclear.

Blessings for the Day,

Maureen

I am not an expert on depression. Lupus can cause it, or a lupus patient can certainly become depressed. But depression is not one of the conditions from which I have suffered throughout my life with serious illness. However, I am not unaware of what depression is and how devastating it can be in its many manifestations. So I was very sad to hear that Matthew Warren, 27, son of  Rick Warren, Pastor of Saddleback Church in Lake Forest, CA, had committed suicide on Friday (April 5). As I write this, news is scant; most of the information I was able to find out came from secondary news sources and the text of an email letter Warren sent to church members (http://blog.christianitytoday.com/ctliveblog/archives/2013/04/rick_warrens_so.html).  But we will hear more, no doubt, in the days ahead.

It has to be nightmarish for the entire Warren family and all those who know and care about them, and clearly it is a time of prayer and giving comfort. My prayers and hope for peace of soul and healing are with all who are mourning this deep loss. And my prayers are also with all those who suffer from depression.

Sometimes, in my conversations with others, there is an undercurrent or overt declaration that people of faith should not, do not suffer, especially not from depression, and that there must be something wrong with their faith if they do. Matthew Warren’s death is a reminder to us that, no matter how strong our faith or how strong our ties to a faith-based organization, depression, like other diseases and afflictions, can occur, sometimes with devastating effect.

Because we are Christians does not mean that we do not suffer and, certainly, depression can bring great suffering. Moreover, because we suffer does not mean we are unworthy Christians, failures, or shamed. There is no shame in seeking help, in facing depression. There is no shame, too, in caring for and about someone who suffers from depression.  The important thing is that we try – to do what is healthful for ourselves and others, to extend comfort, and to stay close to God throughout the whole journey. From the letter he wrote to the Saddleback community, it sounds as if Pastor Warren and his family did whatever they could to help Matthew, an example of constant love and care to be admired.

I pray that the Warren family will  not feel guilt, but will be blessed with support as they go through the next days and weeks. And I pray that anyone else who suffers from depression will be surrounded by support, love, and care, and find the help that they need. For God loves every one of His children. Every one.

Blessings for the day,

Maureen

My book, “Peace in the Storm: Meditations on Chronic Pain & Illness” will celebrate 8 years in print this month! It’s been wonderful to see the book still find its audience: those who live with chronic pain and illness and who strive to walk with God and deepen faith all along their life journeys. And, although years have passed since I held the first copy in my hands, I still remember vividly the process that unfolded to bring the book to print. Truly, it was a very personal pilgrimage that began with my diagnosis of lupus, the upheaval that brought, and, finally, the desire to share what I’d learned in faith as a result.

Yes, it was a process of finding peace, even as illness and pain swirled around my fragile life. Peace of soul. Peace with God.

The book really did not start as a book at all. In those early days after my diagnosis, I naturally sought spiritual guidance from prayer and Scripture, as well as support from loved ones and my medical team. But, as the disease continued to flare, bringing severe brain fog, fatigue, and other symptoms, I wasn’t able to keep up. I forgot what I’d prayed about, or what I’d just read in Scripture. As I struggled, I began to jot down bible verses, thoughts, and events as a way to recall them later.

A long while passed, and one day, I read back over what I’d written. My flare was at a different phase than it had been at first, and I certainly had more experience managing lupus (or, rather, trying to manage lupus). I wondered, “Could others benefit from what I’ve written?” And I called a wise woman, a literary agent to whom I dedicated the book, and asked her the same question.

As it turned out, the agent had lost a loved one to lupus and had long wanted to find a book about it to champion. She took on “Peace in the Storm,” and navigated the literary waters for me with great determination. My book found its editor, its publisher, and its home.

Just on the eve of finalizing the publishing agreement, my agent passed away from pancreatic cancer. Just before she died, I spoke with her, and the last thing she said to me was, “You have your contract.” The musings and notes I’d compiled during my journey would now help others along theirs.

I am still  on the difficult journey of chronic illness and pain. But each day, I find peace, during quiet moments of prayer and reflection or sometimes externally, through others or occurences that speak of God’s care, love, and presence. And, too, I hear from others who share their stories and witness. This fellowship is marvelous – we’re not alone! – and it reminds me all the more that, as we find ways to more peace, we can use our experience to lend a hand to others.

Praise God for His many gifts, seen and unseen!

Blessings for the day,

Maureen