Living with Lupus: An Uneasy Alliance

I’ve always been an active person. Baseball and basketball with my son, riding horses, gardening, hiking all summer long, and visiting old towns to revel in their mystery and longevity are just some of the adventures I’ve enjoyed. Getting older was just another adventure, as far as I was concerned. It was something to acknowledge, but not something to interfere with my other adventures.

Oh, there were some hiccups in my health in the past 30 years. A stint with endometriosis and ovarian cysts in my late teens (resulting in two operations, one year apart), a neck injury from a car accident at 21, a caesarean to deliver my son at 26, calcific tendonitis in my shoulder, resulting in another operation in my mid 30s (which rendered my arm paralyzed for a couple of months), and the usual scare when a shadow is found during a mammogram.

I breezed through all of these with my usual aplomb, working through the stages of worry during the first symptoms, to acceptance and research of options, to looking for a good doctor (and discarding those doctors that just didn’t fit the bill), to fixing the problem, recovery, and then jumping back onto the dragon of life to continue the ride.

Well, in the summer of the year 2000 (my own personal Y2K), I had the usual run in with an achy flu episode (or so I thought). I stayed home from work for a couple of days, felt a bit better, and thought nothing of it. A few weeks later, I didn’t feel well again, aching in my thighs, a bit of a fever, malaise, etc. Stayed home for a day again, thinking another bug had been chasing the first one and had caught me instead.

This was the emerging pattern of how life would be for several months, prompting me to visit my doctor a few times. By month 2, I was constantly running a low grade fever, aching all the time, and my hands were hurting like the devil too. Having always been a strong girl, and then woman, I noticed immediately when my strength began to wane. I wasn’t sleeping well at night, but was dropping off at work, even feeling sleepy on the drive IN to work, much less the drive home.

When I awoke one morning with my hands hurting so badly that I couldn’t grasp my hairbrush, much less the lid on a jar, or a pen to write with, I called my doctor again and begged an appointment that day.

Fortunately, he was accommodating, and I again made the drive to his office (by now my car could be on auto-pilot). Blood tests this time showed a bit “lupusy”, as they say. Well, this was a worry, wasn’t it? An appointment was made with a rheumatologist for further workups which entailed blood tests, and a battery of questions.

After a couple of visits, it was determined that I most likely had Lupus, presenting in the form of arthritis, aching, and fevers. My horror at discovering this was mitigated by the fact that the disease was most likely going to present itself only as arthritis, with occasional low grade fevers. Well, this was certainly better news than finding out it would affect my organs, or skin, however drastic the life changes were in store that I would need to make.

As is the case when I or a member of my family becomes ill, the internet and the library become our best friends. Research, research, research! As a person who has had my share of operations, as well as doctors that seem to have received their medical degree through a mail order company, and also competent doctors who just don’t have the time to give you all the options, I firmly believe that a patient MUST research. Don’t expect the doctor to have that magic pill, or to be completely responsible for your well-being and care. This is a team effort, and YOU, the patient, play a major role.

There are so many resources on the internet, as well as support groups, books on diseases and conditions, and new studies. What a wealth of information! Of course you want to be careful with what you try, and you do want to check with your doctor if you choose to try something new. You don’t want to choose a therapy that may contraindicate medication that you are currently taking, prescribed by your doctor. What you also don’t want to do is be discouraged from trying new things just because your doctor, or a friend, says that it probably won’t help. There are many therapies that some doctors don’t believe in, or don’t have information on, but that doesn’t mean they aren’t viable and helpful.

I am still an active woman; however, I have made modifications to my lifestyle. For one thing, since sunlight will trigger a Lupus “flare”, and can pop you out of remission, the Lupus patient must stay out of the sun. This doesn’t mean that you have to adopt a vampiric lifestyle. What it does mean is investing in clothing that has an SPF rating, using sunscreen as if it were your second skin, wearing hats, and perhaps having the windows tinted on your car. Why not bring back into vogue the parasol when on outings?

Eating healthy and exercising, even when you really don’t feel like it, are also essential. If you keep your body strong, then your ability to adapt to, and take control of, the disease is greatly increased. There are many vitamins and supplements that can also help with inflammation. Check into these. Surprisingly enough, there are supplements that you don’t want to take if you have Lupus.

Since Lupus is an autoimmune disease, and it causes your body’s immune system to attack your body (joints, organs, skin), then you don’t want to boost your immune system. Echinacea, certain medications to help with insomnia, and several other supplements are on the forbidden list. Look into this.

There are many websites and books that you may reference in your quest for answers. One thing you don’t want to do is ignore it. Face your fear of going to the doctor and fear of diagnosis. Get help, and then help yourself. Don’t leave it all up to the doctor. Above all, don’t let yourself get mired down in depression or helplessness. Taking charge and trying to get your old routine back, albeit with some modifications, is essential. Keep your head up, get that smile back on your face, and check out the resources listed for more information.

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