Lupus Fog

Lupus fog is real. As I took my morning walk today, a thick fog gradually rolled in across the bay. In a matter of 15 minutes, familiar landmarks vanished. The island across the bay was gone. I knew they these things were still there, but try as I might, I just couldn’t see them. As I drew near, things gradually emerged from the fog. I thought to myself, “That’s how it is with lupus fog.” Your phone number might be hidden in the brain fog at one moment, and as you move through the day, your phone number may reappear, but how to do a simple task becomes engulfed.

Perhaps the hardest part of a lupus fog episode is, that although you have forgotten something important, you still realize that you used to know it. You worry that these lupus cognition problems will never go away and you are terrified that lupus memory problems will get bad enough that you will no longer be able to care for yourself.

At 52, about a year after I was diagnosed, I found that I could not remember how to drive home from places. I would pull the car over and try very hard to remember. Then I would cry for a while. Afraid to call someone for fear that I would lose my independence, I would start driving in one direction and hope to see a landmark that would trigger my memory. I could usually figure out when I drove too far and then would head off in the other direction. Sooner or later I would find my way home. At my next appointment, I told my doctor that I was having memory and cognition problems. I never told him just how bad the lupus fog was. He didn’t seem overly concerned, probably because I wasn’t overly truthful! He chalked it up to age. My family felt the same way. I began to doubt myself which made the fog even worse!

My lupus memory problems could have had a systemic origin. My lupus fog could have been caused by the generalized anxiety that comes along with living with chronic illness. Depression certainly plays a part in forgetfulness. I suspect that the disease, anxiety and depression all played a part. As the lupus improved, the fog lifted. Seven years later, my memory is better than it has ever been.

The Twelve Days of Lupus

The Twelve Days of Lupus
On the first day of Christmas, my lupus gave to me
A bad pain in both of my knees

On the second day of Christmas, my lupus gave to me
A creepy rash
And a bad pain in both of my knees

On the third day of Christmas, my lupus gave to me
Hair falling out
A creepy rash
And a bad pain in both of my knees

On the fourth day of Christmas, my lupus gave to me
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees

On the fifth day of Christmas, my lupus gave to me
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees

On the sixth day of Christmas, my lupus gave to me
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees

On the seventh day of Christmas, my lupus gave to me
Seven brand new lab tests
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees

On the eighth day of Christmas, my lupus gave to me
Bone crushing fatigue
Seven brand new lab tests
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees

On the ninth day of Christmas, my lupus gave to me
Red, white, blue fingers
Bone crushing fatigue
Seven brand new lab tests
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees

On the tenth day of Christmas, my lupus gave to me
Protein in my urine
Red, white, blue fingers
Bone crushing fatigue
Seven brand new lab tests
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees

On the eleventh day of Christmas, my lupus gave to me
Butterfly on my face
Protein in my urine
Red, white, blue fingers
Bone crushing fatigue
Seven brand new lab tests
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees

On the twelfth day of Christmas, my lupus gave to me
Trashed self-esteem
Butterfly on my face
Protein in my urine
Red, white, blue fingers
Bone crushing fatigue
Seven brand new lab tests
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees

Inspiration

How often do you hear or read something that touches you deeply? How often do you think, "I need to remember that?" How often does that flicker of inspiration get lost an hour later?

Years ago, at a very hard point in my life, a good friend shared his own book of inspiration. This was not a book, but just a bunch of quotes printed out and placed in a notebook. His quotes were helpful to me.

Over time, I forgot about the inspirational quotes. Then, as I was learning to live with lupus, I started keeping my own book of quotes.

I am reading It's Not the End of the World by Joan Borysenko, one of my favorite authors. Here are some quotes that really spoke to me:

"Resilience is a reflex, a way of facing and understanding the world, that is deeply etched into a person's mind and soul."

"Those who have a 'why' to live for can bear with almost any 'how.'"

"The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails."

"What's your habitual story about why bad things happen?"

Consider getting a notebook and writing down the things that inspire you, the things that make you feel good, the things that bring you back to who you are.

What Would Feel Good?

The holidays are always an uneasy time for me. When I was still the queen of Thanksgiving and Christmas, I thought that the uneasiness came from juggling all the family obligations, work, and the fact that I always got sick over the holidays. But almost a decade ago I gave the tiara to my daughter-in-law who does a wonderful job. All I have to do is show up. I thought part of the uneasiness came from my work which involves countless rehearsals and performances at this time of year. But after 40 years, I really have that under control.

About a week before Thanksgiving, the cloud of uneasiness appeared. I felt tired, but couldn’t really relax to rest. I felt like I should be working on something, anything, but could not get engaged. I stopped exercising. I didn’t cook but grazed on things like bean dip and crackers, apples and peanut butter. I slacked on flossing my teeth. (This is important because I have a bunch of bridges!)

When the cloud of uneasiness comes, I forget what feels good. If I do remember, I can’t muster the motivation to do it. The spiral goes down. The first couple of years after I was diagnosed with lupus were all spent in the cloud of uneasiness. Of course, I felt miserable then, so I could use my health as an excuse. Now I am in remission and don’t have that excuse.

I sat down to remember what makes me feel good. When we are feeling bad, it’s easy to forget what feels good. I feel good after I take a long walk. This afternoon I walked 4 miles along the bay. I feel good when I take a 10 minute cat nap. I took a nap. I feel good when I am reading and I feel good when I have a change of surroundings. Saturday, I curled up in a comfy chair at the library and read two magazines cover to cover. Friday, I sat by the pool at my condo and read an entire book.

A good friend sent me a link to someone’s blog post about how she comes back to herself when she writes. I feel good when I journal. Before I sat down to journal, I sat for meditation for a long time. This afternoon I wrote in my journal. Meditation and journaling feel good.

When I feel bad or uneasy, I forget what feels good. Tonight I printed a list and posted it on my bulletin board. What makes YOU feel good?

Chronic Illness and Thanksgiving

The first Thanksgiving after I was diagnosed with systemic lupus erythematosus, I couldn’t find much for which to be thankful except that I was still alive. I was in constant pain. I felt like I had an unremitting case of the flu for over six months. I had lost both my jobs and had no income. A kidney biopsy the month before Thanksgiving confirmed lupus nephritis and I had started on chemotherapy. When you have a chronic illness, it’s often hard to find reasons to be thankful.

Seven years later, my lupus is in remission. The remission is chemically induced, but I’ll take any remission that comes my way! Reflecting back, I am actually thankful for my lupus. That probably sounds very strange. Why would I be thankful? Lupus robbed me of so many things-ability to work, ability to do many activities of daily living, my identity and my self esteem. There was nothing left but me, breathing. I have since built an amazing new life. I would never have taken the risk of eliminating things from my life and adding some new ones if I hadn’t first been empty because of my chronic illness.

Today, I am healthier than I have been at any other time in my life, in spite of the lupus. So today, in addition to giving thanks for all the good things in my life, I am also giving thanks to lupus that gave me the opportunity to build a new life.

Whose Disease Is It?

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Is it my lupus? Is it her breast cancer? Is it his Lou Gehrig’s disease? Is it her learning disability? Is it his autism? Is it his heart attack? Is it her stroke? On the surface, the answer is, “Yes.” No healthy person in their right mind wants to own our disease or disability-quite the opposite. They do their best to rationalize why they are safe, even invincible. We know better. We used to be them.

Who polluted the earth, the water and the air? Who created pesticides and volatile organic compounds? Who created genetically modified food? Who injects animals and fowl with growth hormones and feeds them antibiotics? Who put endocrine disruptors in our soap and clothing? Who created a high stress, sedentary lifestyle that leads to so many diseases? We are all responsible and we are all vulnerable. My disease and your disease are everyone’s disease. The cure is everyone’s business.

Certainly, the task is overwhelming. That’s OK. Each person does not have to do it all. We can make small changes, each and every one of us. We can become aware of how we, as a species, are causing our own extinction and making ourselves sick. The first step to change is always awareness. The next step is to gather information. Then it is time to act.

The Environmental Working Group has two lists: The Dirty Dozen and the Clean Fifteen. You can download a wallet card of the Environmental Working Group Guide to Pesticides here http://www.foodnews.org/walletguide.php. You can reduce your exposure to pesticides by buying organic whenever possible. The Shopper’s Guide will help you determine which fruits and vegetables have the most pesticide residues and so are the most important to buy organic. You can lower your pesticide consumption by nearly four-fifths by avoiding the 12 most contaminated fruits and vegetables and instead eating the least contaminated produce, according to EWG calculations.”

I can hear some of you thinking, “Well then, I will stop eating fruits and veggies and only eat meat!” The birds and animals that we eat consume the pesticide laden plants. The higher up the food chain you go, the more concentrated the pesticides. And remember, the birds and animals are also given growth hormones and antibiotics. Farmed fish (and a lot of fish are farmed) are also given antibiotics routinely.
Small choices and small changes, one by one, make a big difference.

Balancing

When you have a chronic illness, you have to be able to balance things. Sometimes we barely have enough energy to do the things we really need to get done like basic activities of daily living. Sometimes we do have enough energy. Then something comes along that we WANT to do, like a special event or activity. Those are the times that require some very careful balancing.

Do we do the thing we HAVE to do, then go on and do the thing we WANT to do knowing full well that we may crash the next day? Do we let essential things slide and just do the thing we want to do and try to catch up later? Do we skip the thing we WANT to do becase we are afraid of the physical consequences, and then sit and stew about it? If we do commit to doing the fun thing, will we have to cancel at the last minute because we just don't feel up to it? Will our friends be angry? Will they think we are faking it?

There is no right answer. Each day, each challenge is different. We may take on too much. We may not take on enough. But every day we strive for balance.