Tuesday, June 21, 2011

We deal in shades of gray

We deal in shades of gray.  Every choice that we make.  Every thought that enters our awareness.  Everything we believe and everything that we dismiss as being incorrect.   

It's all relative.  I think that our particular shade of gray depends on our vantage point on a particular situation.  I could ask a dozen different people what they think about something and I wouldn't be shocked if I heard a dozen different perspectives on the same issue.  It very well might be that none of the responses would be any more or less valid than the others.  They would just all be a different shade. 

Absolutes have a tendency to lay waste to progress.  Too often people cling to "right" and "wrong" without considering the possibility that there's a lot of room in between "right" and "wrong".  I'm not trying to suggest that nothing is good, bad, right or wrong.  There are some issues that I feel strongly about and for me, my particular absolutes work.  That is what gives humanity the variance in how deeply saturated the "black" is in some places and how barely existent the "white" is in some other places.  If there was a mutual respect for the differing filters that we all see life through, then we may possibly reach a place where we can hear what one another thinks with an open mind..

Monday, June 13, 2011

Hanging out with shadows.

This isn't going to be a pretty blog entry.  It's just going to be a confession of sorts.  I feel a bit like a shadow.  I'm still me, but just not quite as recognizable.  I feel like a watered down version of me.  Today is the kind of day that serves as a reminder I'm much less "me" now than I was before l was diagnosed with SLE. 

The world still has all of it's color.  The beauty that I see all around me hasn't diminished.  I still see so much of life through an optimistic lens and I like that.   I hope that I'll always at least try to find the good in every situation.  I still believe in hope.  I'm the one whose faded.  It feels like I straddle the line between living completely and often paying dearly for it and being a "Peeping Tom" and just watching life unfold and being present for it, but not really there. 

 

It completely sucks because it's not how I want to be.  The harder that I try to keep up and just be normal, the harder it is to ride out the bad days that come as a result of trying to just be normal.  It only took two "normal" days to completely devastate me.  I'm afraid of having the good days because I dread the bad days.  If it were only physical pain, I could learn to deal with it.  It's the emotional aspects that weigh so heavily on my shoulders.  The emotional toll this all takes on me is much worse than the physical pain.

Being mindful of making sure that I don't overdo it is completely exhausting.  I miss being able to just live.  I hate the delicate balancing act that my life has become.  I know that it's that mindfulness that is the spine of avoiding days like yesterday and today.  I just resent that it's become necessary.  I'm angry with myself when I don't do it and I'm angry with myself when I use caution.  Are my choices really either crippling pain and a virtual inability to function or just being an observer to my own life, not feeling like I have a role in it.  Am I going to end up being a stranger to my own life? 

Sometimes I spend a good deal of time feeling inadequate.  Sometimes I feel like I've let down every person who loves me because of what I feel reduced to.    Sometimes I feel ashamed because I need help now and I'm not used to that.  These feelings are not the kind that I like to share with anyone.  If someone else were wearing my shoes and told me about feeling like this, I would be doing all that I could to comfort that person and I would be as supportive as is humanly possible.  I wouldn't even hesitate.  My shoulder would be there to lean on.  I just don't do well with giving myself that same courtesy.  I'm hoping that by expressing these feelings, that maybe I can learn to give myself a little bit of kindness.  I would be able to give that kindness to anyone else, and if I can show compassion for other people then I can learn to have compassion for myself.

Friday, June 10, 2011

Hey! A dance that wasn't an emotional train wreck! They do exist!

This evening was my daughter, Olivia's 8th grade dance,  She chose a beautiful dress and looked absolutely beautiful..This comes as no shock to me because I see Olivia through the eyes of love and pride so of course she's beautiful to me.  I decided to volunteer as a chaperone for the dance and I was looking forward to it!  I have to say that the planning committee really brought it because the dance was beautifully decorated and all of the kids attending spared no expense in making sure that they looked fabulous which made all of the preparation for the dance that much more meaningful.  Personally, since I was a chaperone I didn't need to look awesome so I borrowed a dress from someone who is a great dresser.  I mean, I have dresses, but they aren't meant for looking nice.  Moo-moo dresses are ideal for comfort but not for looking presentable!  The decorations were beautiful and the food displays looked mighty fancy.  So fancy, in fact, that I had no idea that the cups with strawberries in them were juice cups!  I noticed them but didn't know what they were for! 

This isn't the real reason for this blog, however.  I remember being an eighth grader once and I remember the loneliness attached to it.  It's tough to feel like a nobody because you don't fit the mold of what's considered "cool".  I think that this applies to any grade, not just 8th.  I just remember feeling like such a loser at times because I couldn't be a carbon copy of all things cool.  One of the biggest regrets that I have in my life is caring about the opinions of any of the popular crowd regardless of whether they were positive or negative.  It's all well and good that I don't care now, but I can't help but think about how much happier I might have been if I hadn't been so insecure.  It was only when I really stopped caring about what others thought of me that I truly was happy in school and unfortunately, that didn't happen until I was a senior. 

It was amazing to witness a social situation that didn't reek of the loneliness, anxiety, rejection and isolation that I was sure existed across the board for all middle schools .  Sure, there were groups that were off in their own cliques but I don't think that I saw any kids sitting alone.  It seemed to me that everyone had a place that they felt that they belonged.  I'm sure that there was no shortage of drama but the evening was pretty positive from my perspective. 

I have to admit something that is incredibly embarrassing for me but it'll make sense shortly.  I had bouts of fear over being at this dance even though I'm an adult now.  I made jokes about it but in all sincerity, I feared being rejected.   Ridiculous, I know.  It wasn't a constant feeling but just the occasional moment of irrational fear that would strike but thankfully would pass quickly.  I felt completely pathetic and weak during those moments and reverted back to the socially awkward girl that just wanted to be either liked or be invisible to "mean kids".  I'm cringing on the inside right now.  Sometimes self reflection sucks!   I share all of this because last night I didn't see anyone experiencing being an outsider and that's incredibly comforting.  It also helped that I didn't feel like a loser who nobody would talk to.  Granted, I didn't make new friends or anything like that, but it was my choice to not socialize too much and that felt great.   I didn't feel rejected at all because I have a silly, funny and friendly daughter who has friends who are just as silly, funny and friendly as she is.  Even though I was just a mom who was there as a chaperone, they weren't "too cool" to talk to me even though I'm old :)

I also made a few observations throughout the night.  I observed that 8th grade boys and girls still dance the same way as when I was their age.  Of course, there are always exceptions to the rule, but in my opinion it's like stepping into a time machine and going back to any middle school dance from any place at any time.  I also noticed that dances are a big deal, unlike dances from my middle school time.  It was seriously more like a prom and even though I know that the flyer said formal/semi-formal/casual were all welcome, I didn't expect so many beautiful dresses!  I even saw some of the boys in suits and I think I saw a tux or two!  Impressive! 

I was going to try to pick out my favorite dress of the evening but after giving it careful consideration, I can't decide because there were too many dresses to choose from!  I will say that Cassidy's owl dress was insanely awesome and it made me think "Give a Hoot.  Don't pollute" and also reinforced my opinion that owls are pretty much the best bird ever.  I also liked Ari's dress because it reminded me of the renaissance festival and that got me thinking about how much fun those are!  I loved Yesenia's dress because it was a pretty shade of yellow but not in any way too yellow!  It was a fun break from the monotony of the sea of black & white dresses.  Emily, Skylar and Michelle all looked great in their dresses and I love that they all made sure to incorporate another color into their dresses because what fun is it if there's no color?  Olivia's dress was exceptional because of the design and the nicely placed cut out patterns.  She looked absolutely perfect.  The dress is one of a kind and so is she!  I love that kid! 

Maybe this dance was an anomoly, maybe not.  Either way, I'm glad that I got to see it for myself.  Now I can replace awkward and painful associations with the positive experience of seeing kids having fun instead of having panic attacks. 

Tuesday, June 7, 2011

Sand box is back and I wouldn't be happier!

I think that my summer just got infinitely cooler.  The sandbox is full (that is, full of sand instead of 1/2 full of sand, mixed with sticks, leaves, toys & spiderwebs!).  This is a good thing!  I realize that most 35 year old women don't regularly play in the sand, but I'm not most 35 year old women.  I have a great landscaping guy who brought over a truck load of sand for the box.  I'm already planning out what I'll be building tommorrow in my head.  I was thinking of just easing my way in, but I think that I'm going to build something extravagant instead!  I have really missed the sandbox almost as much as my daycare kids have.  It seems like a very simple thing, and it probably is, but since we all view everything that we experience with a different filter, a sandbox to me is a pretty big deal.  A sandbox is possibilities and a sandbox is complete creativity.  There are no mistakes when building in the sandbox.  Anything that is done, can be undone, and that is a very awesome concept to me.  A sandbox can bring people together (OK, in my situation, it brings children together).  It is an opportunity for developing a team effort attitude and some really nice examples of sharing at it's best.  It can be a vehicle for bringing kids together because how many kids will pass up the opportunity to play in the sand?  Sadly, there are times when the sandbox can bring out aggression because of "turf wars".  It's strange how there is an entire sandbox available but every single kid manages to find a way to be in the same corner and then everyone becomes mighty territorial.  Still, it's a great time in the sandbox.  It's never boring for the kids and it's even a good time for adults who allow themselves to give in to the mesmerising thrall of the sandbox.  I know that I can't say no!

Since having some yardwork done, I've noticed quite a few butterflies hanging around.  It probably doesn't hurt that I got 2 of those colorful globe decorations and pedestals to put them on.  I would have dismissed them in the past, but now I can see how delicate they are and their gracefullness.  I am still the kind of person who is enchanted with creatures like butterflies, dragonflies and damselflies.  I have had a couple experiences with butterflies gathering around me and landing on me.  I like to think it's because I'm totally awesome, but the logical reason might be that I was standing near colorful clothes.  Still, I like my explanation more.

Now, the squirrels, they are in a category of coolness that is theirs own.  Those squirrels are not afraid to work for their food!  I think it's a fair trade off because how many people have seen a squirell wrestling match!  I have a new squirell and he just started coming to my house yesterday.  That squirrel is 100% ninja and that's why we named him Ninja Squirrel".  All of our squirrels have names and we try to make note of anything that we can use to tell them apart.  Who knew squirrels were so entertaining!  Usually, they run in packs and they always look like they'rehaving a blast!
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I  am going to do my best to see the simple beauty of what awaits outside.  Today I got to remember what it was like to be carefree.  I know that I can't do that forever.  I'm just over the moon at the knowledge that I can go outside and enjoy this beautiful weather.

I'm not sure it'll stay this way, but while it is, I plan on making the time count!

These are the kinds if days that help me to see that there is always something that can renew my love and joy for my job.  I like knowing that.

Wednesday, June 1, 2011

Fear

I really don't like waking up in pain.  It's not about the pain itself, but about being blind sided by it.  Well, I guess that the actual pain that I experience is a close second in the race between the intensity of the pain and the pain's ability to sneak up on me and attack when I'm least expecting it.  Neither of those compares to the fear.  I don't like feeling the pain, but I'm not afraid of it.  My fears run much deeper than that.

I'm afraid of the unknown.  Lupus is a crafty disease.  It's incredibly difficult to diagnose and there are too many possible causes to peg down just one cause.  There are too many possible symptoms and since no two people are the same, comparing my lupus to anyone else's lupus wouldn't be a good comparison.  The thing is this; there are people who have lupus and are able to live long and relatively healthy lives with treatment.  Then there's me.  I'm sad that I'm not a candidate for Benlysta because of kidney involvement and the fact that I'm in an active flare.  I love that the option is there for others who struggle with the stranglehold that having lupus can get on not just us, but our families.  I'm afraid that I might not get the chance for treatment in this lifetime.

I'm scared of being taken over by lupus.  Since my type of lupus is a multisystem type, it isn't confined to just one place.  Right now, I have kidney damage and it's SLE related.  I'm hopeful that it can be reversible as long as I get out of this flare.  I have hemolytic anemia, B12 deficiency anemia, and iron deficiency anemia along with a positive result when I was tested for Von Willebrand's factor.  I'm covered in bruises almost all of the time and I never really remember where they came from.  My circulatory system isn't really ship shape.  I have Raynaud's disease so I always have to take care to not get too cold.  I have Sjogren's disease and that means that at any given time, I have ulcers in my mouth and sometimes they are too painful to ignore and sometimes I don't notice them at all.  My eyes are always dried out and that's painful, too.  I was lucky in that I don't have rheumatoid arthritis, but unlucky because I got the pain from it without the physical damage to the joints.  It's polyneuropathy and it sucks!  I have chronic insomnia and not getting enough sleep can trigger a flare, so that's something that weighs on me.  I have a feeling that I have had lupus for much longer than I thought that I did.  What other way is there to explain how out of 7 pregnancies, I only have one child.  Lupus gets to me and it's frustrating to have it happen because I feel like I'm witnessing the systematic breakdown of my body and there are limits to what I do for treatment.

I'm also afraid of being a disappointment to my husband and daughter.  There are days that I feel like they are the real victims.  They are so strong for me and I don't know if I'll ever have the words to give to them that express how much their support, love and patience has saved me.  I know that they hurt, too, but they put their feelings aside to comfort me. 

I want to expel the fear.  It has been useless so far and I want to enjoy life as fully as I can but the fear can be so intimidating and I lose myself in that fear.  I'm full of "what if's"..   I don't what anymore.