Tuesday, May 27, 2014

Something New

Post Soundtrack:  Hayling by FC Kahuna

It seems my life is full of new things lately.  I'm adjusting to not going out into the sunlight without major prep beforehand.  I did manage to go to a pool party yesterday, though of course I did not swim.  Still, I refused to let my limitations dissuade me from participating in the social event.  I gooped up with sunscreen like I'm supposed to, wore my nice new UPF 50 hat, and spent an hour and half on a shaded porch beside the pool.  After that time, I went indoors and spent the rest of the time playing games.  It's an odd adjustment, but one I'm determined to make.

But more notably, I am trying something completely new.  I have been writing, in one form or another, pretty much all my life.  It is something that comes naturally to me, though I do not profess to be any sort of expert at it.  Even so, I do enjoy it, and have a certain amount of proficiency as well.  An online friend asked me recently if I was doing anything with my time.  I had to answer honestly that no, I wasn't.  She pointed me to a site that one of her friends uses to make a little extra money on the side.  So I went to take a look.

Something to keep in mind about me is that I have never been a career woman.  Ever.  I have had a total of four jobs in my life, three of those pre-marriage.  I have tended a snow cone stand, briefly was a barista, and had a few years of being a yard duty on an elementary school playground.  The more recent job was to babysit children while their mothers worked.  I am quite solidly a housewife and stay-at-home-mom.

So when faced with this site that links freelancers with clients who have jobs they want done, I was both interested and intimidated.  List my previous jobs?  Somehow I doubt my dispensing snow cones at the age of sixteen was going to be of any help in getting writing jobs.  Oh yes, and how about my shcooling?  Well, I did at least graduate high school... and went to junior college for a bit.  But nothing much there to show for it, so... ?!  Man did I feel overwhelmed.

But I plugged on.  Despite how foolish I felt setting up my profile, I did it anyway.  I was supposed to take some skill tests to prove I was capable.  Imagine my mortification upon recieving a "below average" score on my spelling test!  It doesn't much help, though, that I tend to spell with my fingers... meaning that I prefer to type or write out a word to assess if it is spelled properly.  Guess I've lost my touch at telling by sight, but then again, my sight is really not very good at all.  It was yet another blow to my confidence.

I was so uncertain of myself that I had a long talk with hubby about it.  He is a wonderful and very supportive man, but also isn't afraid to tell me when he disagrees with me.  (I can't tell you how reassuring and helpful that is!)  I knew already that the core of my problem was self-confidence.  I lack it.  I have no faith in myself or my abilities when pressed.  However, I felt instinctively that I was capable of doing at least some of these writing jobs.  I just was too scared of failure to jump in.  He prodded me to go ahead and try, to brush up on my skills and do it anyway.  I agreed, but was frankly terrified.

Timid I might be, but I also am stubborn.  So once I made up my mind to make an honest try at being a freelance writer, I gritted my teeth and got more serious about it.  I took a couple more skills tests, did well at them, and scanned the jobs.  Lo and behold, I finally found one I was pretty sure I was capable of.  Something simple and straightforward.  It was to create 100 inspirational sayings.  So I took a very deep breath, held it, and plunged in.

I was proud of my little cover letter, because I managed to convince myself not to run myself down, ask for allowances, or downplay my skills.  I kept it firm, positive, and calm, at least on the written page.  In real life, I was a twitching, squirrely mess.  This became mixed with a surge of excitement when I was contacted in return, and carried on a text interview.  It took another surge of courage to invent a sample saying so the client could 'judge my style'.  (It took another check with hubby that what I came up with was worthy of sending.. I really should have believed in myself to begin with, but it's sooo haaard!)

Anyway, it resulted in my being asked to do the job.  Which I have, in three days.  No idea if that's reasonable or not, but guess what?  I'm doing this for myself, not on someone else's time, unless I agree to do so.  I have finished it and turned it in.  There's just one problem now... I have no idea whether I'll really get paid or not.  It's entirely possible, due to how this was set up, that she can blow me off even though she received the finished project.  But oh well, such is life.  It was for a measly fifteen bucks.  Besides that, for me the biggest up-side to all this is that I did it!  Nerves and all, I am overcoming and making something new of myself.  That, I think, is worth celebrating.

Now if only I could find another job to apply for that I feel comfortable with!

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.

Thursday, May 15, 2014

Transitional Thoughts

Post Soundtrack:  Tectonic Shift by Delerium

I have discovered something called Patients For A Moment that I am going to try and participate in.  This month's topic is:  How do you cope with transitions?

I have been dwelling on the idea of transitions for several days now, and have found myself oddly baffled by the idea.  It isn't that I don't understand the word, nor is it that I do not grasp the idea.  After a round with a 24 hour flu, and preparing for my next rheumy appointment tomorrow, I think I have finally settled on why I find it so difficult to write about transitions in my life, and why I can't figure out how to express myself about them.

Perhaps it is because I am so new to my diagnosis, but to me, every day is a transition.  Granted, there are bigger ones than the average, everyday stuff, but that's just it... they are simply bigger rather than different.  I suppose my biggest transition lately was the diagnosis itself.  Having my suspicions proven true was more transition than I cared to have, to be honest.  However, even the normal daily challenge of figuring out whether I can go to the store, or to my son's orchestra concert, or just to the mailbox, are more than I care to handle too.  It seems like most of my transitions lately have been rather unpleasant.

But that still doesn't really answer the question, does it?  For all my wrangling at the idea, I have managed to avoid the question itself.  This is probably because the answer is as unpredictable as the transitions themselves.  Let me explain a little further.

I have always been an emotional person.  I empathize easily with other people.  I generally find it very easy to express how I feel at any given moment.  Because of this, I had always figured I would be an emotional  volcano if anything major ever went wrong.  Nine years ago today, I found out just exactly how I would respond in a crisis.  Our house caught fire while we were gone to church services.  We came home to fire trucks and one very ruined home.

My first frantic thought was how I had to get my son away from there, out of sight of our burned house, away from the potential emotional trauma.  Thereafter I settled into a detached frame of mind.  I dealt with what needed dealing with, and felt baffled and irritated by the strongly emotional reactions of my friends, who wept for my loss.  At the time I didn't notice how cold I was inside.  Later on I figured it was due to shock.  I had to remind myself it was okay to cry, that it was alright to be upset.  I had walled it all away, tried to keep it separate from myself.  This reaction surprised me.

I've learned since that this is apparently how I handle things that are too big for me to functionally handle.  After I was told by my rheumy two months ago that it was indeed Lupus, I expected to explode.  I expected a hysterical bout of tears.  It never came.  I wept a few shocked tears on the way home, and a few more would leak out over the next few days, but beyond that, nothing.

It is possible this careful calmness is good for me, as it leaves me free to deal with the changing situation.  It allows me to deal with things one small item at a time.  It's been a process, and still is.  How does one adjust mentally and emotionally to something so vastly life-altering and ever-changing?  There is no rhythm to fall into, no routine to get used to, no solid new state of life to pace myself with.  It adds a whole new layer of unpredictability to life that is one great, giant transition.

Now if only I could feel as calm about the little transitions, and less aggravated by their randomness!

Saturday, May 10, 2014

Up And Down

Post Soundtrack:  Changes by Yes

I'm finding it difficult to have any sort of standard by which to measure my good days and bad days.  It sounds like it should be a no-brainer, I know.  However, Lupus is odd in that it nearly forces you into living in the moment.  Sure, there's a lot of positive in that, but it makes gauging progress as a whole fairly impossible.  For example, today is going pretty well thus far.  I have very close to no pain, no stiffness, no swollen feet, no flushed face.  All is well, and it feels like all has been well and will be well, which is patently untrue.

Perhaps this is what leads some to go off their meds sometimes?  It isn't something I've been able to relate to, as I am desperate to achieve and retain a pain-free existence.  The idea of stopping my meds because I feel so much better seems counter-intuitive.  However, when looked at with the perspective of being "in the now," it makes a little more sense.

I have my suspicions that my symptoms are worsening, but I have no proof, nothing to point my finger at and say, "Look, there is why I feel I am worse!"  So, to remedy this, I intend to keep a sort of journal.  It won't be anything fancy or complicated.  It'll just be a day planner with simple notations.  Each day will be assigned an up arrow or a down arrow.  If I can do everything I want to do that day without pain, then it gets an up arrow.  Anything else gets a down arrow.  I will note if the day was busy, as that is quite relevant to the success or failure of my meds.  I will also note the kind of problem I had that day in the simplest term possible.

The real issue here is how varied my days can be.  In a single day I can go from energetic, painless, and happy.... then a few hours later end up feeling feverish, weak, exhausted, and pain-wracked.  Up and down, down and up.  Some days are steadily in between.  Some are steadily bad or steadily good.  I never know how the next day will be, or even the next hour.  It's highly frustrating sometimes, and makes planning for anything problematic.  But it's something I can't change about Lupus.

There is a lot I'm having to accept about having this disease, and very little of it is anything I care to be content with.  That being said, I don't have much choice.  I might as well make the best I can of these changes.