Thursday, May 17, 2012

Sun Sun Sun... how I hate the Sun

Hindsight is 20/20, or so they say.  I can't say that everything has truly come into focus for me yet because I'm still learning about this disease every day.  One thing that is crystal clear for me is how much I loathe the Sun.
Obviously I appreciate the good things about the Sun, like its use as a greener-energy and photosynthesis because I like strawberries and tomatoes. Blah blah blah. Plus the fact that it'd be -459.67°F here without it.

As it turns out, when I was floating in the crystal clear waters at Half Moon Cay, I was making myself sick!  I mentioned in the previous post that David and I were floating (well I was floating, he tried).

I debated posting these pictures, but they illustrate my points: 

1. David can't float.
2. Obviously I am as pale as they come.
3. The water really is that clear!

I have never been tan a day in my life.  I got some very bad sunburns as a kid and I can turn very very red, but when the red goes away all I'm left with is Casper-white skin and possibly a few more freckles. In 1997, I was in the Miss Florida USA pageant (my one and only pageant and definitely not my thing). Anyway, I was the palest of them all.  Unfortunately, there isn't a prize for that (it probably wouldn't be politically correct if there was).
My roommate at the pageant even helped me paint on my self-tanner which really looked like wood stain. I was still the... ummmm... the palest of them all.  But, I come from a long line of pale-skinned people as my Father's lineage is all Norwegian.  (No, I'm not Irish.  Everyone thinks I am, but I'm not).

My point is that I have never been the "sun-worshiping" type.  I have always drenched myself in sunscreen because if I don't, it will hurt.  The irony is that I was born and have lived my entire life in the "Sunshine State" of Florida.  And, I love cruising!  On that particular cruise in May of 2010 though, as you can see in the pictures, the water was beautiful and the weather was perfect.  I had to get out and swim.

As much as I hate to admit this, David was the first to notice that I seemed to get more nauseated when I was in direct sunlight.  We would even joke that I was his little vampire.  So, I started intentionally avoiding any sun exposure at all and I felt noticeably better (not good, just better).  When my doctors first suggested that this might be Lupus, I started doing my homework about photosensitivity and Lupus and I knew that I had to change the way I live my life.

From 10am to 4pm, I do my best to stay inside.  Unfortunately the kids get out of school at 3:00, but I get it done as quickly as possible.  My photosensitivity is a big trigger for a Lupus flare for me and it has gotten worse, not better.  It's also been one of the more expensive triggers to deal with.  What most people do not realize is photosensitivity is not just sun exposure.  I experience symptoms when I am exposed to ultraviolet rays from the Sun OR artificial light.  That's fluorescent lightbulbs.  You know the bulbs that EVERYONE has now? All of those CFL (or compact FLUORESCENT light) bulbs that we all started buying because they're greener and save money? Yeah... they totally make me sick, which is totally awesome -- not.

Again, I really hate to admit this, but David figured that one out before me too. When I stopped spending time in our kitchen (which was lit by 7 recessed lights with -- you guessed it -- CFL flood lights), I noticed my regularly scheduled nighttime flu was getting better.  So, we spent a bloody fortune on those CFL flood lights 7ish years ago and they're supposed to last 2,000 years. (BS btw!) Not only are those bulbs 1/3 of the price now, but I had to take them down.  Our only option (to be "green" and "energy-wise") was LED.  LED bulbs are awesome and I really love them, but they are expensive.  I have $300 worth of lightbulbs in my kitchen now.
On the BRIGHT side these lights are guaranteed to last 10 years and you better believe I saved the receipts and a good portion of the packaging.

Another BIG problem for me is fatigue, especially when I am triggered.  So, if I have too much UV exposure, the fatigue sets in.  When I used to hear people talk about fatigue, I just made the association to "being tired."  But "tired" really doesn't do it justice.  My bones are tired.  There are times when I wake up after 8 hours of sleep and I can't muster the energy to slide the arrow on my iPhone or even gently press the snooze.  I never feel well-rested.  I have so much to explain about how the fatigue affects me that it's better served in its own post.

I started noticing how much I dreaded picking up the boys from school.  Not because they fight about the color of the sky and if the water falling from the sky is actually rain.  No, I didn't just dread their sibling-love.
It was the energy it took to get my keys, start the car, put the car in reverse, then put the car in drive, use my foot to apply the brake and gas and use my arms to turn the steering wheel.  All the while trying to dodge the sun from directly shining on me.
The drive takes 8 minutes on a bad day, but it feels like 80.  Then I sit and wait my turn in the car line.  By the time the kids get into the van, I am already frazzled and my patience is worn thin... they don't stand a chance.

About 6 months ago I started to wonder how limousines were able to "legally" tint the windows of a vehicle so much darker than any other cars.  Upon doing my research I found out that in Florida there is a medical exemption for sunscreening specifically for people with a diagnosis of Lupus.

It was a fairly simple form where the doctor checked a box for my diagnosis and signed her name and credentials.  I then mailed the form back to the state and received a certificate for my car as well as David's within a week.  When I had the medical exemption certificate in hand, I found out not only could I tint my side windows darker, but I could tint my front windshield too...

Party in my van!

So now I really do have the cool Mom-van.

All kidding aside, I had no idea what a huge difference it would make for me.  Just to pick up my kids from school is so much easier now.

Taking picture of the boys in San Juan
Then, there is the everyday Sun issue.  Admittedly, I would actually be quite happy to live the life of a "vampire" (minus the blood sucking and the neck thing).  Unfortunately, it's just not realistic as the Mom of 2 young boys who love everything dirty.  So, aside from getting the windows of my van tinted I have this umbrella that makes me an easy target for all of my friends and random strangers. The picture to the right was taken without my knowledge because I actually find the umbrella quite embarrassing and quite honestly it's a total pain in the ass to take it everywhere I go. 

In a shaded alley in Italy.  Umbrella in hand. 
But, it does keep me from being nauseated.  So, I am considering naming my umbrella because "he" is with me all the time.  Of course, it has to be a boy's name because it is a pain in my ass.  But, that damn umbrella has been all over the Caribbean , many parts of the US, and a few European countries.  The umbrella I have is made by Coolibar.  

While in Europe last September, David and our good friend Mike constantly picked on me for my umbrella.  Funny thing though, they seemed somewhat appreciative as we stood in line at the Vatican for a couple of hours and the temperature under my UV protective umbrella was 10-15 degrees cooler.

All of that are minor pains compared to the general lifestyle change.  I feel like the photosensitivity has cost me friends and it doesn't make me a very fun Mom either.
Our close friends have come to realize that I usually turn down invitations that involve leaving my house during the day.  It's lame, but it's really just easier to say "no" then to make special accommodations and drag an umbrella around.
But, it breaks my heart to be THAT Mom.  My kids have really adjusted well, but they're still kids.  So even though they know that I can't take them to the pool during the day, occasionally they still ask.  Last summer, I was sick a lot.  David was quite the trooper and when he would come home from work and after dinner, he would take the boys swimming.  But, truth is... I love to swim, so it sucks for me too.

One day late last Summer, David was out of town for work and I finally caved and took the boys to the pool.  Then, this woman says "are you Grant and DJ's Mom?"  (any Mother will say that this is a terrifying question to be asked).  I cautiously answered the woman and with some trepidation said "yes," and then she had the oddest response: "oooooooh" (with a raised pitch at the end, as if she had just witnessed something amazing).  I gave in and asked "why do you ask?"  Well, we see your father and mother up here with the boys and Dave is usually alone and very busy on his laptop and we just thought that he was a single dad or a widower.  WHAT???  I LMAO!

So, these women were all like, "Look at him, what a patient Dad."  "Poor Dave, he has so much on his plate and no one to help him."  Well, I said it before and I stick by it; laughter is the only medicine I don't react badly to.

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