But you don’t LOOK sick…

“Men in general judge more from appearances than from reality. All men have eyes, but few have the gift of penetration” – Niccolo Machiavelli

“But you don’t LOOK sick!”

How many of us have heard this, when trying to explain Lupus to a friend or a family member?

This is a picture of me at the height of my steroid use.  In a very short period of time  I went from a size 4 to a size 14 on the steroids, and it seemed to have all gone into my cheeks!  Many people who are taking steroids  get really chubby cheeks, a syndrome which is known as “steroid moon-face”, and I had it REALLY bad.  I didn’t look as sick as I was , but I did look really, really  fat.

Distant friends and relatives would wonder in hushed whispers, “How did she get that fat so fast?  She doesn’t LOOK sick…”

But I was very sick, and in the worst flare I have ever had to date.  My brain and heart were under attack by my immune system, and I was fighting for my life, and my self esteem. I had just suffered a stroke and had to have heart surgery, due to inflammation in those organs, and I was having daily seizures and arrythmias.   At one point my doctor from the Mayo clinic said to me, “We don’t know what’s going to happen to you,  just try and hang on.”  I did, thanks to the support of my family and friends, my youth, and my faith, but it took me about 3 years or so to come out of that flare.   It was hard enough being sick, but it was also hard to endure the stigma of getting so fat and moon-faced.  If I had a “good” day,  I was able to leave my home and go to the grocery store,  but I was always very conscious of the looks and stares I received, and I stopped performing.   Not just because I didn’t have the strength and energy to sing, but because I looked so horrible and I was afraid of what people would think.   At times I would get the signature Lupus butterfly rash, and some of my hair would fall out, but I didn’t really look as sick as I was.

It’s hard for people who are healthy to relate, even if you are in a wheelchair or losing all of your hair to cancer, but when you look “normal”  it can be hard to explain yourself.  I didn’t try,  I just hid from the world.  How many of us do this?  You get tired of trying to explain, even to the most well meaning and caring loved ones.    I was really  lucky to come back from that flare  and go into remission, and now every good day is a blessing to me.   I have lost a good portion of the weight I gained from the steroids, and I’m not ashamed to be seen in public now.  I have strength and energy to perform again, but it was a hard comeback, and sometimes Lupies don’t get lucky and come back.  And all the while it’s happening, there is always someone who says “But you don’t LOOK sick…”   How can you explain it?  Check out this great site, which deals with chronic illness – www.butyoudontlooksick.com

Not Lupus?

“Bedside manners are no substitute for the right diagnosis” – Alfred P Sloan

A lupus diagnosis can be a tricky thing.  If you’ve ever watched “House” you know that any diagnosis that isn’t straight up and in your face can be a challenge, and that the symptoms of Lupus mimic other disorders.  It can  present with a myriad of symptoms, all which could belong to other maladies.  Even the blood tests are fickle, changing from month to month.   I was aged 15 when my symptoms aggressively started, and even though  my blood tests  indicated that the  disease was active,  I wasn’t “officially” diagnosed until I was aged 22.  I had to be evaluated by  several different doctors in different states  until I was finally properly diagnosed by an Immunologist who was  a Nobel prize nominee and a professor at the Harvard Medical School.  My parents and I spent a lot of time and money trying to find out exactly what my diagnosis was, and I was very fortunate that they supported me in every way, because they kept me going strong till we persistently found the answer.     Several doctors noted the blood work, but kept dismissing the diagnosis saying things like  “You’re too young” or “You just need more exercise”, or my favorite, “Do you feel anxious?”  This treatment  is typical for most Lupies, and it becomes a painful and challenging trial to hang on to yourself and your sanity while doctor after doctor picks you apart and may not give you an accurate diagnosis.   They call it a practice for a reason, I guess…

Here is some information taken from the Lupus Research Institute website -

Lupus is chronic and complex, and is often difficult to diagnose.

There is no single laboratory test that can determine if a person has lupus.

To complicate matters, many symptoms of lupus are similar to those of other diseases, and can come and go over weeks and months. It can often take years for a diagnosis to be made.

To diagnose lupus, a doctor should be able to find physical or laboratory evidence of the condition, such as swelling of joints, protein in the urine, fluid around the lungs or heart, or a skin biopsy (test of a sample) that shows evidence of the disease. The doctor also will look at a person’s medical history and special tests to rule out other diseases.

Doctors use the American College of Rheumatology’s “Eleven Criteria of Lupus” to help make—or exclude—a diagnosis of lupus.

Typically, four or more of the following criteria must be present to make a diagnosis of systemic lupus.

The “Eleven Criteria”

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. A special note on the ANA test

Other Types of Lupus

Although the broad term “lupus” usually refers to Systemic Lupus Erythematosus or S.L.E., this is only one type of lupus. Other types of lupus are:

• Cutaneous or “skin” lupus erythematosus. This form of lupus mainly affects the skin—not the rest of the body. Signs include a rash on the face, scalp, or elsewhere that may last for days or years, and can recur. Unlike systemic lupus, cutaneous lupus does not threaten the health of other organs and tissues in the body. And although it’s clearly a concern, it’s not that common for cutaneous lupus to turn into systemic lupus. A type of cutaneous lupus called “discoid” lupus involves potentially scarring sores with inflammation, typically on the face, scalp, and ears. These lesions can scar.
• “Drug-induced lupus” is triggered by the use of certain medicines. It usually goes away once the triggering medicines are stopped. Symptoms of this form of lupus are often relatively mild.

Re-invention

“What seems to us as bitter trials are often blessings in disguise” – Oscar Wilde

Today I woke up with a fever and intense pain and stiffness in my joints, especially my fingers.  It’s spring, and it’s damp outside, and this is no surprise to me.   I could barely move my digits for the first hour, and typing on the keyboard isn’t a fun chore. At one point I look up wistfully at the bottle of Prednisone on my desk, how tempting  it is to swallow one of those bitter white pills and lessen the pain, but I’m not giving in so quickly.  Instead I take  my vitamins and drink a glass of young coconut water, and then slip into my bathing suit, ready for the gym.

With a fever and severe joint pain, most Lupus patients wouldn’t hit the gym, but my gym has a heated therapy pool which is set to 95 degrees and is full of salt water. I know that any pain I have now will disappear once I get into that heavenly pool and start moving.   I swim for an hour with the injured and elderly patients, enjoying the freedom the warm water gives me to move and stretch my body, and now I’m not feeling the pain as much, and when I get back home I put that bottle of prednisone in the cabinet.

I’ve decided to start this Lupus blog in hopes that sharing my story  may open a dialogue which supports or inspires other people suffering with the disease.  Lupus doesn’t have a simple treatment yet, it’s not something that you can just take a pill for and go on with your life. It’s constantly changing and surprising you, so that you have to  re-invent yourself because your ability to live and perform in the world changes as the disease progresses, or goes into remission, at it’s whim.  I am 43 and have been living this way since I was 15, so I’m used to the ebb and flow of it  by now.   I’m not ashamed to admit it and talk about it, and I hope that I can reach out and help change the lives of others, as mine has changed so many times. With every progression of the disease I have fought and challenged it, and so far have overcome. I know that I have been blessed with good medical care, and helpful friends as well as spiritual intervention, and I’d like to share what I have with others because sometimes all we need is the support of another person dealing with challenges similar to our own, to inspire us and keep us on our path.  To show us that others have “been there” and have made it through.

So today I  grabbed the wolf by his scruff and gave him a good shake, and he stopped snarling for a little while.  If I hadn’t learned about  courage and stamina while dealing with this disease, I might not have had the courage or perseverance to record and publish my new jazz album, which was a challenge to make, even for a healthy person.   You can listen to a sample of it at my website –   http://solitairemiles.com/Listen.html

I guess that Oscar Wilde is right.