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.

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.

Yesterday

Yesterday morning when I woke up, I was filled with dread. The first day of the work week is already rough enough, but when severe pain is factored in to the equation, it becomes brutal! I felt as though someone took a baseball bat and repeated laid into my lower back again and again. The pain made me feel like I was going to throw up and I was not in one of my better moods. That just made it seem so much worse.

It became crucial at at time to take a step back and really evaluate the type of day that I was heading toward and ask myself if a lousy day is what I really want for myself today. I was really afraid of the pain that I was dealing with because it's the first time since my flare up began that I've been in that much pain. I had to allow myself be aware of the good parts during the day that are so easy to miss when pain is in the driver's seat. That meant that I had to let some of the negativity go to the best of my ability.

My daycare children were extra lovable and that was a great mood booster. Steve called me from work to check on me and that made me feel very loved! It felt as if I had a team of angels working for me to lighten my load :). I witnessed quite a few instances of squirrels playing grab-ass, which is completely entertaining and if you haven't witnessed their tomfoolery as of yet, there is no better time than now! Also, listening to our beautiful wind chimes is a major mood lifter. I love the sound that the chimes make and I love how long that they resonate.  The sound is one of the most beautiful sounds that I have ever heard.

The way that we make the choice about our day matters more than we may ever realize. I'm glad that even despite the pain that I'm feeling, I can find the happiness in a day. 

I decided to get a new doctor to treat my SLE. I decided to choose a hematologist instead of a rheumatologist and I feel good about this choice. I like knowing that I will hear an entirely new set of treatment options.  I know that I won't get a different diagnosis, but I feel like a different specialist may be able to provide a different vantage point. 

All in all, it was a pretty good day.

Memories of rainy days gone by...

I remember when I used to love it when it rained when I was a little girl.  I loved hearing the sound that the rain drops made as they hit the roof.  The smell of rain was intoxicating!  Watching the rain drops splatter on the ground and watching the rain roll down the windows was an activity that could keep me occupied for ages.  I liked trying to guess where the next drop would fall!  Rainy weather provided an incredibly cozy atmosphere and there was nothing better than cuddling with my mom or my dad on a rainy day.  Rain also had the same effect on me that a good Thanksgiving turkey had on me!  Napping on a rainy day was the best!  As long as it wasn't too cold outside, I was allowed to play in the rain and that was always a great time.  I would look up and let the rain fall on my face, but I didn't try to catch the rain drops in my mouth.  I wanted to see how long I could look up at the rain without closing my eyes!  Splashing in puddles was pretty much a given.  I also liked running in the rain and trying to use the grass as a "Slip-N-Slide".  I wouldn't recommend that because it almost always ends badly!  Still, before I inevitably got hurt when I would play that particular game, it was awesome! 

I miss being able to enjoy the rain.  Now when I see that it's raining, I start worrying about the physical toll that it will take on my body.  It's also a bummer to wake up in the morning and know that it has been raining based on the amount of pain that I'm in upon waking up.  I would gladly deal with the pain in my joints that come with the rain, but unfortunately I also have to be cautious because this kind of weather is the kind that quickly changes the direction of my recovery from the lupus flare that I'm in.  I have to be much more aware than I want to be.  I want to play in the rain and I want to enjoy it for all of the reasons that I did when I was a little kid.  I'm not so keen on doing the "Rainy Day Slip-N-Slide" anymore, but it would be nice to just look up and see how long I can keep my eyes open again.

One day I know that I'll get there.  I won't be in a flare forever.  I'm grateful for the progress that has been made in the treatment for lupus and even though I'm not a candidate for the newest treatment, I have hope that there will be a treatment option that I'll be a good candidate for!  In the meantime, I'm going to live vicariously through my childhood rainy day memories.

Totally stupid!

I watched a documentary a few nights ago and the topic was stupidity.  The documentary was fascinating and very informative, but I was left with one nagging question.  What constitutes stupidity?  It's very hard to come up with a definition for stupidity.  I know it when I see it but I can't seem to put it into words.  I'm going to put in a few definitions that I find here and there and see if any of the definitions seem to fit.

Webster's Dictionary defines stupidity as:  slow-witted; unintelligent; foolish; dull. 

The Urban Dictionary defines stupidity as:  Lack of intelligence. The most common thing known to man, followed far behind by hydrogen atoms.

There's no way that I could possibly look up every definition of stupidity, so I think that every person in the world should have their own spin on what stupidity means to them,  For myself, I think that stupidity is more about wasting potential and never being willing to step outside of their comfort zone to see if they really are stupid or if they are perhaps a little scared.  Stupidity is seeing the way that other people live their lives and either doesn't acknowledge the stupidity that they are witnessing or they just learn the stupidity habit from others around them.  Stupidity is wasted potential.

I'm sure that there are lots of definitions about what the word "stupidity" means.  I'd love to hear some feedback because it would be stupid of me not to keep my mind open to the possibility that other people might have good if not better than my definition.

I guess maybe there is some truth to the line from "Forest Gump" when he said "My momma always says that stupid is as stupid does."

Any thoughts?

Remembering my mom on Mother's Day

I almost forgot about Mother's Day this year. Almost.

Saying that I miss my mom doesn't even even touch on how I feel. What I feel is so much more than that. The first Mother's Day without her left me feeling as if I were coming undone. I couldn't keep myself from remembering her even though I was trying my best not to. Back then I had still not given myself permission to mourn the loss of my mom and Mother's Day is not was not a good day to start the grieving process. I know that I might have seemed like I was coping well to almost anybody who spoke to me that day but that wasn't the case.

I felt like I had to hold back my grief and keep myself together. I held back so that I wouldn't cry in front of anyone. I held it all in because I felt like if I could just bottle it up, then it would get easier. I didn't understand then what I do now. It doesn't get easier no matter how emotionally detached I try to be. Time has a way of metamorphosing loss but it doesn't make it easier.  Time makes coping possible, but there are some days, such as Mother's Day, when all that matters is just holding on. 

Last night I was consumed by memories of my mom, both good and bad.  It was odd because the memories occured when I was sleeping but they weren't dreams.  Every memory was real and every memory hurts in it's own fashion, whether good or bad.  I agonize over my mom's death and I replay it over and over again in my head.  The pain is visceral and intense.  My senses go into overdrive and I recount every sight, sound and smell when I access that memory.  I can even remember the temperature in the hospital and how it compared with the temperature outside.  What I remember the most is the way that I felt.  I felt as though when she died, that a part of me died with her.  When she died, I felt the deepest regret because there was so much more that I wanted to say to her and apologize for.  I ached for my dad because he lost the woman that he loved so much for so long and he wanted to comfort his children and grandchildren, but who was going to comfort him?  He shouldered that pain alone and my heart broke for him then, and it still breaks for him now.  I was sad for all of the family not just because we lost her, but because I knew that she was the glue that held so much of our family together and without her, it wouldn't be very long before pieces would start to crumble and fall away.  Our shared pain should have brought us together but instead, it shattered us.

I have moments on occasion when I forget that she's gone and for that moment, I feel complete.  But a moment doesn't last long and once it passes, I feel that hollow spot again and I don't know whether to be thankful for the prior moment because I had my mom back, or to curse it for how deeply it cut when I remember that she's really gone. 

I'm glad to have all of my memories of her because those memories are all I have to keep her alive in my heart.  Every memory is beautiful and excrutiating for me.  They're all bittersweet because they're all that I have of her. 

My mom and I had a wonderful and complicated relationship and for that I will always be so thankful.  I learned so much from her even if I didn't know it at the time!  She was good like that!  I love her for being the mom that she was to me.  She turned even the most simple thing into a learning opportunity, like grocery shopping with me.  She taught me how to read by teaching me how to read labels, coupons and advertisements while shopping with me.  Her love of reading inspired mine.  I know that I had a way of really making her angry but even when I did, I felt loved no matter what.  She never had a problem with showing affection and saying "I love you" which seems like it's a given for what moms do, but nonetheless, I'm so glad that she was loving to me. 

To say simply that I miss her and that I love her cheapens what she meant to me.  She was so much more than that.  I keep her picture in my wallet and I have pictures of her around my house.  I keep her old driver's license and a check that she wrote me the month before she died in my wallet, too.  It hurts like Hell to have these reminders around but the thought of not having them is a much worse thought.  I hold on to every bit of her that I can and while it comforts me, it's a bittersweet comfort.

I'd like to think that when she died, she took with her the piece of me that died with her.  I'd like to think that she is holding that piece of my heart, just like I hold her in my memory.

Martin Luther King, Jr. had it right!

I remember 9/11 like it was yesterday.  I remember the shock of seeing the news footage and thinking to myself that this couldn't be real.  Sadly it was all too real.  I didn't know any of the people who lost their lives that day but I mourned their loss just the same.  It was a dark time for so many people and a dark time for our country as a whole.  There were definitely times when I believed that the death of Osama bin Laden would bring about justice but if I am truly honest with myself, I know that it was vengeance that I wanted, not justice.

Just today alone, I have seen the same amazing Martin Luther King, Jr. quote posted on Facebook in response to the news of the death of bin Laden.  I think that it bears repeating.

"I mourn the loss of thousands of precious lives, but I will not rejoice in the death of one, not even an enemy. Returning hate for hate multiplies hate, adding deeper darkness to a night already devoid of stars. Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that" ~ Martin Luther King, Jr. ~

I can't celebrate this man's death no matter how much pain that his actions and orders have caused.  It's not because I agree with his actions or anything along those lines.  His death doesn't undo the lives that he was responsible for snuffing out.  It doesn't turn back the clock.  It just adds to the death toll and I just can't bring myself to rejoice in his death.  There is already so much death and suffering in the world.  There's so much hate and anger as well as hopelessness and despair. What I wish there was more of is love and light.  I'd like to see more acts of kindness and more empathy for our fellow human beings, no matter where they are in the world.

 It may be naive but I hope for it just the same.