Facts about lupus:

• No new treatment has been approved by the FDA to treat Lupus in over 50 years.

• An estimated 1.5 million Americans have a form of lupus.
  Lupus results from an immune system that is out of balance, causing it to become destructive to any organ or tissue in the body.

• The health effects of lupus include heart attacks, strokes, seizures, kidney failure, and miscarriages.

• Symptoms, such as fatigue, skin rashes, joint pain and hair loss mimic other conditions, appear differently in different people, and can increase or decrease in severity from day to day.

• It can take years to diagnose lupus. More than half of the people with lupus visited three or more doctors and suffered four or more years before being diagnosed.

• If left untreated, the health consequences of lupus can be devastating and potentially fatal.

• An estimated 80 percent of Americans know little or nothing about lupus.
  

There seems to be much evidence that Michael Jackson suffered from Lupus.  There have been many reports of him suffering from the disease since the mid 80s.  In 2003 he attended a Lupus LA fundraiser.  In October, 2007 “sources close to the pop star” told Fox news that he had Lupus.   After Michael’s death, spiritual teacher and medical doctor Deepak Chopra told People Magazine that his longtime friend Michael Jackson suffered from Lupus for many years. There are numerous pictures of him with what could easily be a Lupus rash on his face.  Lupus might explain his avoidance of the sun, his rumored drug use, or some of his erratic behavior.

So, the question is, why are none of the major news outlets covering this story?  Why is nobody investigating these reports?  I can only guess it is because the story of a superstar abusing drugs for recreation is a far more tantalizing story than a man suffering decades with chronic pain, insomnia, depression, anxiety, etc. and using medications to try to get through each day like hundreds of thousands of us do every day.

I for one can very much relate to balancing a fear for your safety and life with the desperation to ease the pain and suffering.  Taking a little more medication than last time because you just have to get some relief and rest but being terrified that this time it would be too much.

If this is what happened to Michael Jackson, the world should know about it!  Not only does he deserve the truth but it will save lives!  And, even if his Lupus had nothing to do with his death, the awareness that could be brought to a disease that desperately needs it, while filling in a missing piece of the Michael Jackson puzzle would be world changing!

Just like the butterfly, I too will awaken in my own time. ~Deborah Chaskin

My life once again is put on temporary on hold, just when I thought things are getting better that I’m finally reaching the end of my dark tunnel and finally finding the light… boom, it happens again! Lupus strikes back and this time it did not only crippled my body but it also crippled me emotionally. I’ve always been a strong person with great faith, I always try to see the bright side of everything and I always tell myself that God will never give me something I cannot handle and I thought I am that strong, that since I’ve been through a lot there’s absolutely nothing that can break me anymore, I was wrong.

I just came to the point when doubts clouded my mind, what if I’ll never get well, what if I’ll spend the rest of my life in pain and my family totally broke because of me, what if God is not listening to me and what if I’ll never see sunrise again… the reality of death became real to me again and fear starts to sets in and I remember those sleepless nights at the hospital, those empty hours that I lay awake waiting for the break of dawn so that I could somehow feel I have yet to live another day.

There’s a certain fear in my heart that I know will not go away until such time, I can be assured that things will get better and just like a butterfly, I shall awaken in my own sweet time…

I have to admit that being sick can really be tough, you need to be strong enough to handle the pain. There are times that you just need to give in to whatever what’s in store but never never give up. I often wonder why I got sick, I searched everywhere about Lupus to find out where I got it but I’m just not successful, at least there are cancers like mesothelioma that you can actually know where it started and probably give you some insights on how to treat them properly. I just hope and pray that one day Lupus can also reveal itself to me and to other lupies as well, to give us hope and heal us eventually.

70% of lupus patients are photosensitive. Excess sun exposure can cause flares in people who have systemic lupus and aggravate cutaneous lupus. Exactly how UV light aggravates lupus is unknown. But according to experts, “People with lupus should not deprive themselves of the great outdoors; they just need to cover up.”

The Sun

Photosensitivity is a serious problem, especially for those with lupus. But with the proper know-how those with lupus can lead a normal outdoor life. It is almost like playing a game … a high stakes game where the stake is your outdoor enjoyment. Your opponent (The Sun) is warm-hearted but wily and potentially dangerous. To win you need to come to the game educated, well prepared and dressed to win.

Knowing your opponent.

The Sun shines a spectrum of radiation. For our purposes we will concentrate on the UVA (ultraviolet A) and UVB (ultraviolet B) rays, both problems for those with lupus. It is important to understand two basic characteristics about the radiation you’re up against because the strategies of winning are different. UVB is significantly stronger in the summer and between the hours of 10:00 am to 4:00 p.m. UVA, on the other hand, stays at the same intensity all day long and throughout the year.

StrategyHappy Face : You must stay on guard all day, every day and for all four seasons. Planning activities in the morning or late afternoon will increase your odds for success

Being sun-safe is a contact game so you’ll need full body protection before going out. Let’s start at the top. Cutaneous lupus of the scalp and face is very common, even for those with thick hair, so sunscreen and a sun hat are both essential.

Sunscreens

“Look for a sunscreen that is hypoallergenic, has broad spectrum protection, and has an SPF of 30 or greater.” As a safety precaution she suggests first testing the product on a small area of the skin to rule out skin sensitivity or allergy.

As you may know, the term broad spectrum sunscreens refers to both UVA and UVB rays being blocked. What you might not know is that SPF (Sun Protection Factor) only measures UVB protection. Labeling laws regarding UVA protection are currently being defined by the FDA. One way to check if UVA is being blocked is to read the ingredient panel and see if ingredients such as Zinc oxide, Titanium dioxide and Parsol 1789 are included.

Getting the most from your sunscreen

Apply enough. Most people apply sunscreen like moisturizer which equates to about half the SPF rating you seen on the bottle. Example: SPF 30 lotion applied like moisturizer would afford only SPF 15 protection. Rule of Thumb: 1 tsp. for an adult face and neck (1/2 tsp. for a child).

Apply sunscreen 20 to 30 minutes before leaving the house. Most health experts recommend reapplying sunscreens every 2 or 3 hours, or more if active or swimming. However a recent study suggests that reapplying 20 minutes after stepping outside, instead of waiting 2 hours, can reduce your UV exposure by as much a 40 percent.

Heat may change the chemical composition of sunscreens. So don’t store in the car and other places where temperatures may get high.

StrategyHappy Face : Apply enough sunscreen and take it with you for re-application

Sun Hats

The next layer of protection is a sun hat. A four inch brim or greater is recommended for maximum protection. Sun hats with a downward slanting brim will go far in protecting your face as the sun approaches either horizon . For additional protection on the face and neck and/or for those who can’t wear sunblocks, a hat with a drape that extends across the face or a scarf used as a mask, may be a good answer.

Clothing

Now for the body. As with the face, sunscreens/sunblocks are an option for your body. But for many, clothing is a better option. With clothing, you’re not putting chemicals directly on the skin. Plus, the protection won’t wash, sweat or rub off during the day. Anything you put between you and the sun will help block the sun’s rays. The question is, “How much?”. Rules of thumb for everyday clothing is the thicker, the darker and the tighter the weave, the better. The type of fabric also makes a difference. Of all the fibers, cotton is the least UV protective. The average T-shirt blocks only 50% of the ultraviolet light and when wet that protection dramatically drops. Lycra and polyester have the most UV blocking ability with nylon somewhere in the middle.

Special sun protective garments are available commercially. The main difference between these outfits and everyday clothing is that sun protective garments have been rated by an independent laboratory for their sun blocking ability and then given a UPF (Ultraviolet Protection Factor) rating.

Most sun protective fabrics are tightly woven/knit and may (or may not) be chemically treated with UV inhibitors. Fabrics from cotton to polyester are used, with the most common being nylon.

Also unique to sun protective clothing are special design features to increase sun protection and help keep the wearer comfortable on a hot day. Such features may include air vents, a roll-up collar for added neck protection or cuffs with retractable hand flaps. Sun protective clothing also provides protection when damp. By wetting your shirt or hat you can stay fresher with evaporative cooling - a big advantage on a hot day.

Will the strategies work?

Well, there are no guarantees.

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Beware of the sneak attack! The sun can play unfair when you least expect it. Don’t be deceived by a cloudy or overcast day. As much as 80% of the sun’s harmful rays can penetrate this facade.
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Sand, cement and snow can reflect as much a 80% of the sun’s original light.
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Window glass is also deceptive. Although UVB is blocked by glass, UVA is coming through with full vigor.
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Remember the sun is always moving. You may be in the shade one minute and in the full sun the next.
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Medications can add to your sun sensitivity or make you sun sensitive when you were not in the past.
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The sun’s intensity increases 4-5% with every 1000 feet of elevation.

StrategyHappy Face Keep a scarf or sunscreen with you at all times for unplanned exposures. Having a sun umbrella is also a quick and handy tool for unexpected exposures.

Wearing a physical face shield like a scarf and spending less time in the sun may be necessary on some occasions like when you are closer to the equator or at higher altitudes.

Everyday I feel like a grain of sand in an hour glass…

I used to be I in complete control of my life and it may sound too good to be true but I am living my dream. Everything was perfect just the way I planned to them to be. It was the year 2001, I’m a fresh graduate, had my dream job in an international company that pays really well, my boyfriend and I are planning to tie the knot.. what can I ask for more?? I had everything I ever wanted but from the moment the pain in my lower body struck and I found myself almost paralyzed, my world began to fall apart..

Everyone thought it was just a fever and it will go away soon enough.. yeah right! Two weeks in the hospital and still the doctors cannot say what was wrong with me and I’m not getting any better, in fact I’m getting worse each day. And while I’m lying in the hospital bed, I felt helpless and I cried to God “what’s happening?” I knew something was really really wrong but I had no idea that from that moment on, my life will forever be changed. Suddenly my perfect world is not so perfect anymore and I had to adopt to a new lifestyle, my life was turned upside down and my dreams shattered. I was crushed and broken into tiny bits until there was almost nothing left for me.

Lupus had changed my life, in every way possible and I still question God from time to time “Why me? What have I done so wrong to deserve this?” I did not ask for a perfect life.. and why would He give something only to get it back.. I was deeply hurt and from a time I was angry at God, blaming Him for all the pain I have to endure with this illness. But I soon realized there was no one to blame, everything that’s been happening has a reason and I have no right to be angry with God. Slowly, I am accepting that this is probably my fate and I have to believe that somehow something good will come out of this. Everyday is a struggle but I take them now as a blessing, I have so much to be thankful for and sometimes we take for granted the simple things in life not realizing that it is essential as the air we breathe. Sometimes when we are faced in a difficult situation we tend to freak out but let us rely on God’s comforting words…

“Be still and know that I am God” Psalm 46:10

I’ve been dancing with lupus for almost eight years now and it’s a journey full of ups and downs. Lupus is a very unpredictable disease, it’s complicated and often misunderstood. During my first year with lupus, I had a hard time coping with the disease. I, myself couldn’t understand what’s happening to me. There are days that I feel fine and there are days that I feel so weak and tired. Fatigue is one of the common symptoms in lupus patients. Often times, we get tired with no reason at all, the unexplainable weariness to do things and feeling weak even to get out of bed. Even after eight years, I still have so much to learn with this chronic illness but I have already learned quite a few things to somehow cope with it and live with lupus.

Here are some ways that may help you reduce fatigue and prevent those “bad days” of lupus:

Get enough sleep. Some people need eight hours of sleep or even more but for some, like me I just need six hours of sleep to feel okay. It is also important to sleep at night because I read from somewhere that sleeping at night helps our immune system.

Do not tire yourself out. I am often restless but I noticed that I often get tired when I engage with my daily activities, I am starting to practice pausing with every activity just to help my body rest. It may slow things down but that’s okay, just take your time.

Exercise and eat a healthy balanced diet. Do I need to explain more?

Organize and schedule your activities ahead of time. I am starting to be forgetful, I know it’s not because I’m getting older but I blame all those medicines I’ve been taking so I need to write down my schedules and keep a to-do list. Organizing your schedule helps you minimize stress and allow you to work on your time efficiently.

Finish your tasks one at a time. I am a multi-tasker. I do things all at once because I hate to just sit and do nothing but I realize that I get tired easily every time I do a lot of things at a time, so I started to just focus on one task and finish it before engaging myself with another task.

Avoid stress. As we all know, stress is our number one enemy. It’s the number one cause of our lupus flares. But the thing is how do you avoid stress? Well, don’t ask me just immediately consult your doctor once you feel stressed.

Learn to live with lupus graciously. Acceptance is the key to coping with lupus, stop asking why, stop looking for someone to blame just look up and ask for God’s guidance through your walk with lupus.

It may be a chronic illness but remember there is absolutely nothing that God cannot do and you can overcome everything with Him, even Lupus or any disease for that matter. Just keep the faith!

I had a wonderful day yesterday and I also met a lot of interesting people. It has always been a dream of mine that Lupus awareness can be spread about in our country so that people who are afflicted with the same invisible illness can somehow manage to know what’s going on with their lives and to let them know that it’s not the end of the road for them. That is why I am thrilled when I was interviewed by Health and Home magazine yesterday to share my story and my thoughts regarding Lupus and I just hope that in my own little way I may be of some help and inspiration to others who are also suffering from Lupus.