Butterflies

I’ve always heard people say something along the lines of “if you’ve lived with something your whole life, it isn’t so hard to accept it”. This phrase has usually come up in discussions about such devastating things as poverty, illness, blindness – you get the picture. I guess it makes people feel better to think that this statement is true, when the reality is that it is not.

I’ve had Systemic Lupus Erythematosus for so long that I really don’t remember what “normal” life was like. I started getting sick at age 2 and was finally diagnosed when I was 7, and we all know our memories of those early years are difficult to access (perhaps in deep psychoanalysis, but I neither have the time, money, nor inclination to embark on such an endeavor). So let me tell you, living day in and day out with this disease, even with no memory of what it is like to not be sick, is not easy.

For the past 18 years I’ve been relatively lucky, with no serious hospitalizations or flare-ups of the illness. I maintain my health with a minimum of medication, although if I go too many days without that medication I feel it. It is easy to gain a measure of confidence when you go so long without complications – to feel invincible – as if you can walk right up to the precipice and jump to find yourself flying instead of falling. With Lupus it always seems that it is at that exact moment, mid-flight, that everything changes and you begin to fall again. You can feel perfectly healthy one day and unable to get out of bed the next. Always you have Damocles’ sword hanging over you, dangling, threatening flare-ups, kidney failure, neurological damage, and a host of other problems. You never have power over your own health – the best you can do is take care of yourself and hope that things work out for the best instead of the worst.

This is what I wish most people were more aware of when it comes to knowledge of Lupus. There is no one state of being with this illness. We aren’t always withering away in our beds. We are strong, we are happy, we are living our lives as well as we can. And if we are very lucky, there is always someone at the bottom of the precipice to catch us.

Today is the last day of Lupus Awareness Month. Learn the facts by visiting the Lupus Foundation of America website. Pass it on.

Sea at sunset, Halkidiki

Sea at sunset, Halkidiki
Originally uploaded by melusinagr

The beach at Nikiti in Halkidiki is one of my favorite places in Greece. It makes a nice weekend getaway for anyone who lives in and around Thessaloniki. The shops aren't too touristy and there are some truly exceptional restaurants (Grada and Kyani Akti to name a couple) - with reasonable prices.

However, my biggest battle when it comes to places like this in Greece is with the sun. Living with lupus means I can't just run out to the beach any time I want, I have to plan my outings in the early morning or just before the sun goes down. For the most part I don't mind, as these are quite peaceful times to go to the beach. Still, sometimes I wish I could just go be in the sun without worrying about getting sick. During the day it can really bring me down, but by the time I get out into the early evening and see the sea looking like this, it seems just as beautiful as it does during the day.

A rose by any other name is just as sweet

The rose
Originally uploaded by melusinagr

Sea side

DSC02400
Originally uploaded by melusinagr

It seems I've been at a loss for words lately - I'm always either too tired, too grumpy, or too disenchanted with the way things are in the world. Since I take a lot of pictures, I'll let them tell my stories now and then, at least until I have something to say.

Oh deathless sea, tell what you are whispering*

*Quote from the poem "I lived the beloved name..." by Odysseas Elytis

Lupus Awareness

I've shared the story of my life with Systemic Lupus Erythematosus here before. Now Lupus Awareness month falls in May, and I feel that even though I'm not keeping up with the blog as regularly as I used to, I need to promote awareness and help to quell some falsehoods that might have arisen during the Miss USA pageant last night.

It seems that during the Miss USA pageant, Morgan Woolard, the runner up for Miss America (from Oklahoma), claimed that she cured herself of Lupus. Obviously, this is impossible (unless she had drug-induced lupus, which is a bit misleading). Spreading false information like this in such a public forum hurts the efforts of all of us who are working towards promoting awareness for Lupus, and it belittles those of us who have been fighting this illness day in and day out. Spread the word...learn the facts about Lupus at the Lupus Foundation of America website.

I live in Greece, so I did not have the opportunity to watch the pageant first-hand. I only heard about Ms. Woolard's claims from scores of angry Lupus patients across the internet. Still, misinformation is no way to promote awareness, especially when it is estimated that around 80% of the public knows very little or nothing about Lupus - and so I wanted to share the facts.

From the Lupus Foundation of America website:

It is true that medical science has not yet developed a method for curing lupus. And some people do die from the disease. However, people with non-organ threatening aspects of lupus can look forward to a normal lifespan if they:

• follow the instructions of their physician,
• take their medication(s) as prescribed, and
• know when to seek help for unexpected side effects of a medication or a new manifestation of their lupus.

Although some people with lupus have severe recurrent attacks and are frequently hospitalized, most people with lupus rarely require hospitalization. There are many lupus patients who never have to be hospitalized, especially if they are careful and follow their physician's instructions.

New research brings unexpected findings each year. The progress made in treatment and diagnosis during the last decade has been greater than that made over the past 100 years. It is therefore a sensible idea to maintain control of a disease that tomorrow may be curable.

Please spread the word and Band Together for Lupus!