I’m still here!
I have gotten behind in my running updates for a variety of reasons.
One – life has picked up speed with visitors, holidays and soccer season. All 4 kids are participating, Victoria is on 2 different teams and Caitlyn is playing on the school team and refereeing the base youth games. I am spending far more hours away from home (and the computer.)
Two – The computer / internet is in high demand. All three girls have homework online every night. By the time they are tucked into their beds, I am fairly worthless and heading off to sleep myself.
Three – the biggest reason of all – I had some big health/running decisions to make. As I last wrote, I completed the Diva Half Marathon in November, albeit much slower than my usual runs. The race was enjoyable even though I could never seem to get enough to drink and I was lacking my get-up-and-go. I was also exhausted after the race. And again after my next 13 mile long run. It seemed that shorter (3-6 mile) runs left me feeling great, but the longer runs were causing nausea, headaches, and chills on top of the tiredness.
Routine Dr. appointments in the following weeks led to the confirmation of Sjogren’s Syndrome. I have briefly mentioned this before, as blood tests in the spring alluded to this autoimmune disease. Further testing in November confirmed that this disease is currently active in my system.
This article from the NY Times helps to explain the disease (Venus Williams also suffers from Sjogrens.)
No Easy Answers for Those Who Share Williams’s Disease
By GINA KOLATA
Published: September 1, 2011
It often starts out as an uncomfortable feeling in the eyes and mouth. Patients say their eyes are dry and red, even though they are using eye drops. Often too, they say, their mouths are dry. Food is becoming tasteless. Some get swollen glands in their necks, making it look like they have mumps.
It turns out those are the hallmark clinical signs of Sjogren’s syndrome, a mysterious disease caused by an overproduction of B lymphocytes, the cells of the immune system that make antibodies. The deluge of B cells clogs glands. Some people have trouble perspiring because their sweat glands are obstructed. Or they have trouble digesting food.
Sometimes, said Dr. Michael D. Lockshin, a rheumatologist and director of the Barbara Volcker Center at the Hospital for Special Surgery in New York, “you can bend the eyelid down and see lumps, collections of lymphocytes, that make the eyelids look pebbly on the inside.”
When Venus Williams said the disease made her feel tired, she was right. Patients with Sjogren’s, like those with the related diseases rheumatoid arthritis and lupus, are unusually tired, and there is no way to alleviate this sensation. Investigators have studied lupus patients, asking how much oxygen they consume when they exercise, and found that they use much more than healthy people, although no one knows why that is so.
It is hard to know how many people have Sjogren’s, because different doctors use different criteria for diagnosis. The hallmark of the disease is the presence of two unusual antibodies among the thousands produced, Ro and La, named with the first two letters of the last names of the initial patients in whom the disease was described decades ago. Some doctors diagnose Sjogren’s in anyone whose blood test shows Ro and La. But a third of patients with lupus, a similar disorder, and an unknown number of patients with rheumatoid arthritis also have Ro and La antibodies. (I have the antibodies, dry eyes and mouth and had a positive result when a confirming test was done on my eyes. I have not had swollen glands.)
Prednisone, which suppresses the immune system, can offer immediate short-term relief of symptoms. People who are disfigured by swollen glands in their neck can look perfectly normal within 24 hours. But it cannot be taken for long periods because it has serious side effects, like osteoporosis, cataracts, facial swelling, weight gain, muscle wasting, early atherosclerosis and diabetes.
The simplest and safest treatment is the anti-malarial drug hydrocholor quinoline. No one knows why it slows the disease — its effects were discovered by accident when troops took it to ward off malaria. Some who had rheumatoid arthritis or lupus noticed that their symptoms were relieved. (This is my current treatment.)
But it can damage the retina over time and its effects are irreversible — the result is loss of vision. (So far, no vision loss, I am cleared for this drug for another year.)
So doctors are left trying drugs that suppress the immune system. But, Lockshin said, it is hard to know what will happen in the long run with those drugs, which were not tested in patients with Sjogren’s.
The long-term outlook for patients with Sjogren’s is not good. They are at increased risk of lymphomas, cancers of B cells. They are at risk for kidney disease, a scarring of the kidneys that can destroy their function, requiring patients to go on dialysis. And their dry eyes and dry mouths tend to get worse. Dry mouths lead to dental cavities and deterioration of the tissues of the mouth so that eating becomes a misery. Dry eyes after a while cannot be helped by eye drops.
It is not an encouraging picture, Lockshin admits. The disease has so many unknowns that, to a large extent, doctors’ hands are tied.
I have never backed out on a marathon or half marathon before – regardless of illness, pain, or exhaustion. I was always determined that I would not allow this chronic illness keep me from my accomplishments. But, I have also relied heavily on tests and medical advice that showed that my running would not cause harm. This is the first time that I have fears, as do my doctor. In addition to injury and exhaustion, there is concern that the disease, combined with anti-inflammatories, combined with the physical stress of a marathon will compromise my kidneys.
Where does this leave me? After MUCH debate, I have switched my status from the full marathon to the half. I will still get to enjoy Houston – the olympic trials, a weekend with wonderful friends, and the race on Sunday, but Marathon #20 is out of the picture. I am disappointed. But not in myself, just in the situation. I love running. I love the accomplishments. But I am also a fan of my organs.
From here on out, I just need to maintain my endurance, no need to push beyond my current distance.
I hope 2012 will offer more opportunities and fewer restrictions. I have my eye on a sprint tri in March and some 5k and 10k races, and I will explore some halfs here and state-side. I’m putting my marathon shoes on the shelf for a while, and sticking with lucky #13 – miles that is.