Friday, May 16, 2014


Post Soundtrack:  Eyes On Fire (Zeds Dead Remix) by Blue Foundation

Today was my appointment with my rheumy, my first since my diagnosis.  I felt and still feel a great deal of anxiety surrounding the appointment, even now that I am home.  Upon arriving home, swimming in thoughts, ideas, and feelings, something caught my gaze.  A dried up sprig of jasmine flowers, floating in a cup of water too big for the tiny sprig.  Staring at it, I realized that I feel just like that poor flower.  I feel like I'm drowning.

I had a lot of questions for my rheumy this time.  Questions I've been saving up, that never seemed important enough or relevant enough to ask before.  Questions that I had felt like only a real, true Lupus patient could ask, or should ask.  And up until two months ago, I wasn't that.  But now I am.  So I worked up my nerve to make a list of "Should I be concerned about _______?" questions.

The first one of those questions ended up being the answer that surprised me the most, and has left me kinda reeling.  It doesn't sound like that big a deal at first glance.  "Should I be concerned about sunlight?"  His immediate answer was an unequivocal, "Yes."  It was the extent to which I needed to be concerned that has be struggling to breathe.

To the average person, avoiding sunlight doesn't sound like that difficult or daunting a prospect.  After all, I already stay inside most of the day, for most of the week.  Simple, right?  Oh, how wrong that is.

Believe it or not, this means some really dramatic changes.  I had asked him how drastic should my measures get to avoid sunlight?  His answer included every one of the measures I've read about.  Wear 50+ SPF sunscreen on all of my body under my clothes.  Wear a wide-brimmed floppy hat.  Don't go out in the afternoons, especially in the summer.  Sounds simple, but is far from it.

Perhaps I'm just feeling overly emotional over this, but for once I'm finding myself not wanting to do what needs doing for this.  Really, I seriously don't want to think about, much less actually follow through with the kind of changes this requires.  Let me lay some of them out for you.

I shouldn't check the mail until after dark.  I like to check the mail.  I don't go outside a lot, so checking the mail is a nice, brief way to take in the outdoors with minimal exertion and pain.  During the summer, it won't get dark until after nine p.m.  Which means I won't be checking the mail at all.

I shouldn't go with hubby to pick up our son from school.  It falls into that period of time when I really shouldn't be outside.  We have minimal tinting on our car windows that seems to block quite a lot of the UV rays, but I know that probably isn't good enough.  This really bothers me.  Going to pick up my son is one of the ways I choose to interact with him, participate in his life.  The (kinda?) good news on this is that next year he goes to high school, and will be getting himself to and from school.  So soon I'd be missing out on it anyway.  Is it worth it to ignore my doctor's advice and keep going to pick him up in the afternoons for what little is left of the school year?  I honestly don't know.

Sundays will always be a problem issue when it comes to this sort of stuff.  My husband is a preacher.  I would devotedly go to services every Sunday anyway, for both services, regardless of whether he was the preacher or not.  Due to these circumstances, it means Sundays are a great drain on me, in many ways.  I exert myself more, expending much more energy that day than any other.  I spend more time in the car that day than any other day, save those when we run around doing errands.  And now?  Now I am supposed to wear sunscreen and a floppy hat.  I'm... at a complete loss on how to react there.

Does this mean I have to go to church services smelling like I've been at the pool?  I have to research whether there are scentless sunscreens that come strong enough.  Will my straw floppy hat be enough?  Probably not.  Which means I have to go looking for hats.  I dislike hats.  They make my head and body hot, they often are too tight on my head, and they restrict what little vision I have in the first place, making me feel faintly claustrophobic.  More money to spend that I don't think we have.

I don't like thinking about having to restrict how much I go outside.  I don't like to think about having to slather my entire body with sunscreen anytime I want to go somewhere.  I don't like to think about wearing hats everywhere I go.  I don't like having to pick and choose what avenues of protection I will take because of money limits.  I don't like to think of taking more drugs to try and get this all under control, but yet still having to avoid the sun.  I live in one of the sunniest, hottest places on earth.  Avoiding the sun comes naturally here, but not to this extent.

I so very much feel like my poor little dried-up, drowning flower.  And I, right at this moment, feel equally doomed.  Intellectually I know that yes, these measures are worth doing, that they give me hope of not dying, that everything working in concert means I hopefully should live a normal lifespan.  But not a normal life.  It will never be any healthy person's version of normal.  Not now, anyway.  It seems like I have hit another point of mourning.  So pardon my melancholy, I'll just be over here for a little bit, drowning in it all.

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