Grace

Christmas is a horridly busy time for me. In 24 hours this year I have 5 Masses in 3 different places, a pageant, and a half hour concert with teenagers. It's a tight year! Last night, I rehearsed with the teens. Teens are the most amazing people because they don't know what might be impossible for them. They just know they have to get it done. They did very hard music and they did it well.

This afternoon, I rehearsed with the wee ones. No shepherds showed up and we were short one wise man. We pressed the angel Gabriel into service as the third wise man with a quick costume change. The multitude of the heavenly host consists of Gabriel and 3 year old twins who adore their costumes and wings. Joseph found it fascinating to turn his head dress backwards so that it covered his face. Mary beamed non-stop through the whole thing, glowing with the innocence of her namesake.

It won't be perfect no matter how much we rehearse and it doesn't have to be perfect. This is my 40th year doing Christmas as a church music director. One thing I have learned is that "it is what it is" and that it will all be just fine. It's more about the people and the process than it is about the product, although if you pay attention to the people and the process then you actually get the best product possible.

It's much the same when it comes to living with chronic illness. We do the best we can, and then we let go. It is more about our relationships with people and about our process of adapting to living with chronic illness than it is about a product.

As I was able to be gentle with the wee ones and their parents, reassuring them that all will be well, I hope this holiday season that you will know that all will be well. My prayer is that you can realize that the people and the process are the most important parts of the holiday and the chronic illness journey.

A Goof Off Day

Yesterday was a goof off day. I wasn't sick or anything. I was just feeling a little rebellious from two weeks of very hard work and a hard weekend ahead. I hung out in my caftan, drank tea, ate Christmas candy and played video games on my Nook. A few times, I had a case of the 'shoulds' as in, "I should be getting that music in order. I should be cleaning the bathroom. I should be making Christmas fudge." But I chilled instead.

My lupus was undiagnosed for 38 years. Every year as Christmas approached, I was tired, but pushed and then pushed a little bit more. Christmas had to be perfect. Gifts needed to be made and purchased. Baking traditions had to be upheld. Like clockwork, every year in the middle of playing midnight Mass, I would feel the beginnings of a cold-sore throat, swollen glands, fever. I soldiered through Christmas Day and crashed that night. I stayed sick until after Easter each year.

My diagnosis in 2003 was pretty dramatic. Multiple organ systems were affected. For 4 years, I had no choice but to rest when the holidays came. The lupus has gradually come under control. Along the way, I learned that no matter what you do, Christmas will come. Just being with family and friends is all that really matters. I learned to examine my priorities. And I learned that when my body calls for a goof off day, I need to listen!

Holiday Crunch

During the pre-holiday season, women are particularly inclined to exhaust themselves in an effort to create the perfect Norman Rockwell holiday. For those of us with chronic illness, this is a particularly risky time. We think that we can just push a little more, and a little more, and then just a little more and that we will recover later. As the holidays draw near, we keep on trudging, knowing in our hearts that we are doing too much.

Reality check. What is the most important thing about the holidays for you and your family? Does your family really need 15 types of cookies and pies? What do they think is more important-you or the 15 types of cookies and pies? What do you think is more important? Is it really a good holiday if you have all the trappings but you end up crashing and can't enjoy time with the people you love? If you do just one thing this month, ask yourself several times a day, "What do I need to do to take care of myself right now?" If you end up in bed, or worse, in the hospital, what kind of holiday will your family have?

Stronger Together

Today was a very long day. I knew I would be late to our lupus support group, so last night I called Valerie to start the meeting. I had to come late, she had to leave early. Perfect.

There is a theoretical end time for our group. We never observe it. People leave when they need to leave. People stay as long as they need to stay. I love this group. When only veterans show up, we do talk about lupus issues but quickly move on to "just being human" issues. When new people come to the group, everyone attends to that new person. How beautiful!

Today, we talked about how, when you are diagnosed with lupus or another chronic illness, you feel like you are plucked out of life and that everyone else is going on in some movie of healthy people that you can only observe from outside. We found common ground talking about this. Simple things like observing our experiences and talking about them make us stronger together and as a result make each of us stronger as individuals.

Lighting the Way for Others

I love to wear big sweatshirts on cold days. Here in Florida, we have had a few almost chilly days that were cool enough for a sweatshirt. Last week, I was coming in from the grocery store wearing my Lupus Florida Walk sweatshirt. A neighbor stopped, and speechlessly pointed at the logo. After a brief silence she asked, "What do you have to do with that?" I said, "First, I have it. Second, I work there." Silence again. "I was just diagnosed with lupus myself," she replied. I asked if she had any books on lupus. She did not but was interested. We agreed to meet next week.

Later that night I pulled a pile of lupus books off my shelf, put them in a bag, and hung the bag on her doorknob. Tonight, I am reflecting on just how isolated, lost, dazed and confused I was after my own diagnosis nearly 9 years ago.

A well intentioned choir member gave me the book The First Year--Lupus: An Essential Guide for the Newly Diagnosed. As soon as I got home, I put the book face down on the table on my balcony. Sometimes, I tried to muster the courage to even read the back cover. I finally got the courage to read and then the courage to read more and more.

Those books that lit the way out of the despair of my diagnosis, now, they will light the way for another person. When I was diagnosed, I couldn't find a physical person to light the way for me. But I can be there to light the way for her and others.

If you have just begun your journey with chronic illness, there are people and books that can light the way for you, too. You aren't as alone as you might think!

Window Witches

I love my rheumatologist. Not only did he save my life, he is a really good and kind person. Unfortunately, at least from my perspective, his staff hiring skills sometimes leave something to be desired. Enter the Window Witch, or as my friend Doc Rob calls them Helen Wait (as in "go to hell and wait").

I forget when, but it was early spring or late winter when I had an appointment with my rheumatologist. In typical lupus fog mode, I got my appointment confused with King Julian Grayson aka CAT's appointment with the vet. We both missed our appointments. The vet was willing to see King Julian the next day. You see, both of us have urinary tract issues. I have lupus nephritis and he makes crystals in his urine unless he is on prescription food. I called my rheumatologist and Helen Wait said, "Sorry, no appointments for 6 weeks." I explained what happened, that I have lupus nephritis and that the doctor would not be happy if it took that long. The response was, "We have no appointments for six weeks." I asked if she could ask him to fit me in. All it takes these days is 5 minutes. "We have no appointments for six weeks." No empathy. No cooperation.

So I decided to have the labs drawn and then call my doc on his cell after I had that done. Then life got crazy busy which was great. Fiinally, I found the scrip for the labs. By now it was August. I called Helen Wait the Window Witch again. "No appointments for six weeks." Grrrrr. I thought, "He really needs to know about how his staff do not take into account the needs of patients or his requirements of his patients. I left a message on his cell the first week in September, but he did not call back. I understand that. He has two little babies and it's easy to miss something. We had a huge lupus seminar on September 10, so once again I was preoccupied.

By now, I really needed another set of labs drawn. On September 29, I called again. "No appointments for six weeks!" So I made the appointment. It is tomorrow. I asked her to send me a prescription. Her answer, "Have your pharmacy call the office." WHAT? I said calmly, "Walgreens does not draw blood or test urine." She said, "Did you call them?" HUH? I spoke very slowly," I...need...to...have... blood... drawn...and...my...urine...tested. I...need...you...to...send...me... a prescription." She got it.

A few days later the prescription came in the mail. I didn't open the envelope until I was on the way to have labs done. I looked at the scrip, clearly written by a young woman (thanks be to God, I don't have that funky young woman writing but anyway) and it was wrong! Obviously, she copied it off a prescription about 3 years ago. It called for a CBC but not a differential. With lupus, the size and shape of the blood cells are as important as the complete blood count (CBC). The prescription called for a 24 hour urine collection which we have not done for years. On top of that, even if I did a 24 hour collection, it should have called for creatine clearance and it did not. I called and asked for the correct prescription to be faxed. I clearly explained why this prescription for labs was pretty useless. She said the fax went.

Fast forward 6 hours. The lab never got the fax! I asked the clerk at the lab to call the doctor's office. By now, I would not have been even remotely polite. She called. The first person said she never heard of me and that they did not send a fax! I instructed the clerk to ask for Cathy, who confirmed that she sent a fax. The clerk asked her to fax again.

So now, I see the rheumy tomorrow at 4. He will be upset that it took so long for me to get in. He will say that if I called his cell he would have seen me. And he would because he cares. But what about all the patients who do not have his cell? I have decided that this is a teachable moment. I am also not looking forward to it. However, we all get chances to change the world in small ways.

Fitness to Fight Chronic Disease

Welcome guest blogger Melanie Bowen, an awareness advocate for natural health and holistic therapies for cancer patients. You will often find her highlighting the great benefits of different nutritional, emotional, and physical treatments on those with illness in her efforts to increase attentiveness and responsiveness on like topics.

With an aging population in the US and across the world, many countries are seeing a rise in both chronic and terminal health conditions. These can be due to many circumstances such as old age susceptibility, obesity, hypertension, and cancer such as mesothelioma. While researchers and pharmaceutical companies scramble to find new medications for secondary and tertiary treatment of these diseases, many people are realizing that a simple change of diet and daily exercise may create a positive change in their condition, mindset, and health related outcomes. Although diet and exercise may not be a cure-all or a cure at all for most chronic and terminal disease states, they can significantly improve one’s emotional and even physical health along with life expectancy.

Hypertension
One of the most common chronic conditions of people from the ages of 35 and older is hypertension. Hypertension is caused by a number of conditions that include cardiac disease, the build-up of cholesterol levels in the body, and perpetual states of stress. A change in diet and exercise is the first line of prevention for this condition. Exercise may temporarily increase one’s blood pressure initially, but as weight is lost and the heart learns to pump more efficiently, one can see a reduction in as much as ten millimeters in his or her blood pressure, which can definitely increase one’s life expectancy.

Mesothelioma and Other Cancers
Because many people were exposed to asbestos in shipyards and manufacturing industries, there was a significant increase in mesothelioma in the baby boom populations. Treatments for mesothelioma and cancer in general can be very taxing on the body leaving the patient drained and lethargic. However, times when the patient is not receiving chemotherapy can be spent doing light levels of exercise to increase the body’s ability to recover during rounds of therapy. Although this may not be scientifically shown to increase life expectancy, one who can endure chemotherapy with little effects possible may be able to receive more chemotherapy, which could allow for cancer remission.

Exercising at Home
Many people may not have the opportunity, time, or money to visit a gym each day. However, there are many exercises that one can complete at home. Light exercises such as walking can be done around one’s neighborhood and even standing in place inside the house. Jumping jacks are another way to get the cardiac pump working and lose weight as well. Television has a number of workout routines available around the clock, which range from light exercise to heart pounding workouts. Anyone wanting to start a workout routine should consult his or her doctor to ensure they are healthy enough to sustain certain activities. It is best to begin with and progress on a monthly basis.