Appreciation for Life

So.  My head is just filled with so much right now.  So much that it’s hard to explain.  So much that it’s overwhelming me with raw emotion – which is not a place I enjoy being.  I hate the fact that sometimes it’s so hard to see outside of your own little bubble of dysfunction to actually appreciate that bubble of dysfunction.  Ok, so I have a lot of homework this weekend so my social life might have to take a back seat.  Ok, so my job is driving me a little bananas.  Ok, so a co-workers laugh makes me want to crawl out of my own skin.  Ok, so I am a 34 year old Lupus patient, single with no children.  Yah, yah – woe is me.  WHY is it so easy for people to focus on the negative in their life and then let it consume them?  I hate that.  Why is it so hard to walk with your head held high and be in a constant state of gratitude and love?  Why are the bad things such a BIG deal and the good things sometimes not even mentioned?  I have a loving family that I know would die for me.  But with the “everything” that is consuming me right now I think I should be saying, I have a loving, HEALTHY family that I know would die for me.  I have the most beautiful, amazing friends that see me through some of the darkest moments.  I have a Keurig for Pete’s sake and that brings me more joy than I could ever explain.

I have friends right now that are going through or have gone through what no human being should ever have to endure – too many friends.  For respect of their privacy I am not going to go into details, but it’s killing me and making me cry like a baby and I keep coming to WHY?  WHY?!  WHY?!?!  I know I am immensely blessed in so many ways, everyone is – but why is it so easy to lose sight of that in the wake of flying off the handle because of your morning traffic jam?  It’s moments like I’m having right now – even though the tough-girl me often proclaims “I have no regrets” – reminds me of my regrets.  Let’s be real; we all have them.  Why didn’t I stay a truer friend to that person?  Why did I let distance be the reason that they’re not in my life like I’d like them to be?   My heart hurts so much for these friends that if I could take away even one ounce of their stress, worry or pain I would in a minute.  If I had the money to find the “cure” for all things evil I would spend every last penny trying to do just that.  If I could bring someone back – I would.  If I could give you the answers so you’re not in “limbo” anymore – I would.  The strength that exudes from these individuals inspires me. 

It’s funny because I haven’t blogged in a really, really long time and I look at the last blog I posted and it was about something that frustrated me and made me angry.  And reading it now, I’m honestly a little embarrassed by it.  No more.  Basically I need to start appreciating the life I’ve been given a little more and not focus on the bad like I used to.  Gratitude.  Patience.  Love.  Joy.  Friendship.  Laughter.  The Fundamentals.  I truly am not a Debbie-Downer type of person – I’ve just had some things happen lately that have put me in a place I don’t like being.  With what’s been going on with my friends lately it’s reminding me of the person I know I am.  It’s giving me a perspective on life again that I think more people should have.  Everyone says “No matter what happens to you it could always be worse”.  Everyone has heard that or said that a time in their life.  But have you ever truly stopped to appreciate what that really means?  Some of you have, I’m sure – but everyone?  These friends of mine are amazing – truly amazing people.  Even in the face of all these challenges they still take a moment to smile and do things for others, when they would have every right to convert into their own bubble and say “Eff You” to the rest of the world – and no one would blame them.  They still take the time to give their friendship, to show their love, to….well….to appreciate life because they truly know how precious it is. 

Ugggghhhh.......

WTF? Ok, so you miss a call on your phone.  You look at the number and you don’t recognize it.  What do you do?  Do you call the number?  Do you ignore it and wait for them to call back? How about no matter WHAT you choose to do, do it POLITELY!  Why is it necessary to call back the number and AS SOON as the person picks up you say “Who’s this?!?” in a very crass, rude, accusatory tone.  Or better yet “You caaalled me?” or “you called this number???!!!!” …in that same CRASS, RUDE, ACCUSATORY tone.

What the heck is happening to MANNERS in this country?  Forget gas prices for a second….forget health care….forget all of that….what happened to basic, elementary MANNERS!  What happened to “treat others how you want to be treated”?  Because no matter who it was who called you, they’re a HUMAN BEING!  They have feelings, they have a job to do and believe it or not people still can dial the wrong number. That doesn’t mean they deserve to be talked to like a piece of trash.  So the next time you go to return a call you missed that you don’t quite know who it is who called, when you call back and someone answers, you try this “Hi, this is _____, I believe I missed a call from this number?” in a polite, inquisitory tone.  And believe it or not, if it’s that bill collector you’re afraid it is, you can still just. hang. up.

Amazement...

An email that I sent a friend of mine actually inspired me to write this blog......

I have a friend that is going through one of the most painful things anyone could ever go through....out of respect for that friend I am not going to go into details as to what that is or who the friend is.  I admire this person more than they'll probably ever know and could only wish to have strengh like theirs one day.  It's always amazing to me how one can endure so much pain and still muster up the strength everday for their family.  In a recent post, my friend questioned their relationship with God and thought there would be some negative feedback from readers......I too have always had a "unique" situation with God / Religion / Faith.  This was my response to my dear, dear friend.....(edited just a little for privacy reasons)

"Ok. So I know you were expecting some sort of negative feedback, but….you’re human. I myself have
struggled with God for a very long time. My mom never really pushed any sort of religion on me or my sister, so I’ve always said I was sort of left to just “figure it out on my own”.  And that figuring out on my own didn’t really get me too far.  I’ve seen so many horrible things in my life leaving me to question "if there is a God how can this happen?” Which I’m sure is something along the lines of the way you think.

I still don’t know what I believe when it comes to Him. I’m with you on the fact that I do believe that there is some sort of higher being…there has to be. There are a lot of amazing things in life that define us or make us immensely happy and that has to come from somewhere. Things like the innocence of a child or a random, kind act from a stranger.  There is good in this world and I know you know that. But that doesn’t make explaining the bad or finding the “reason” in the bad any easier.
Me and God are no longer speaking either, I don’t know if we ever TRULY have. I have my reasons. I thought I went through enough “shit” when I was a kid when it came to my childhood and my health and honestly, getting my spleen out I thought was the end to all of that. But fast forward 7 years – a healthy, relatively happy 24 year old going through, to me, excruciating pain and it taking forever the find the answer of what was wrong with me. Why does one have to go through that? I’m not a bad person. I do good things. When I see a homeless person begging for money on the side of the street, I’m not a naysayer and I don’t down him for the choices he’s made, I roll down my window and give him a dollar or two…sometimes five if he’s looking in need of a few beers instead of just one :)  And it never fails…whenever I do that I get the same response:  “God Bless You”.  Which baffles me.  How can someone poor, hungry and homeless have a relationship with God.  If I were him I’d be more angry. But I also find myself a little jealous of that relationship as well.

The caveat to all of that is this – sometimes I struggle when I do have tough times of really wishing I had someone, something to turn to when I feel like things are a little more than I can take.  But I’ve never been able to fully “let go and let God” so to speak.  I’ve had many of conversations with believers and to me, I just don’t get it.  I really want to get it and maybe one day I will.  I also get a little resentful towards God.  Like if something really good happens to me and people tell me “thank Jesus” or whatever, I’m like “excuse me, I’m the one that did it, I’m the one that fought for it”.  Even with my Lupus when I’m doing well and people think God played a hand in that somehow…I’m like “I’m the one taking my medicine, I’m the one who has changed how I eat and changed how I live, I’m the one who fights through the pain everyday….God shouldn’t get credit for that and “HE’S THE ONE THAT GAVE IT TO ME IN THE FIRST PLACE!”  See.  Bad, huh?

Now, I just sort of realized I started rambling a little bit….but the point to all of this is I want you to know you’re not alone in your thoughts.  Geez, if you did put ALL of your faith in Him, I would actually be worried. And it’s funny…when I tell someone I’ll keep them in my “prayers”, it’s more so a response of what I feel is expected to say.  How do I, in that moment, explain my relationship with God?  I can’t say “Oh, I don’t truly pray so good luck with that”.  Now, don’t get me wrong, I do have my private thoughts when it comes to WISHING someone well and truly wanting the best positive outcome, but I just don’t necessarily know if it’s a prayer per se.  Like your situation for instance…I think of you guys every day. And now that I’m able to be a little more honest, I HOPE for your family every day. I HOPE that you continue to find the strength you need, I HOPE every day is a little better than the previous, I HOPE HOPE HOPE for your beautiful boys life :)  And personally, I think HOPE can be a pretty strong thing, so I guess hope is my version of prayer :)

Stay strong beautiful friend and give that amazing boy a kiss from me and just know that it’s the support, strength, love and HOPE from your family and friends that, to me, is most important."

But I don't look sick....

I would have to say that one of the most frustrating things with having Lupus is the "but I don't look sick" feeling.  On the outside, I look fine...normal even – if you didn’t KNOW I had Lupus you’d never even think I was sick. But on the inside...Lord help me. Obviously I’m not asking to “look” sick, but sometimes it would just make things a little easier. Weird, I know.
 
I just hate it when after sitting for a while or so and I go to stand, either my knees, hips or feet are completely locked up. So when I go to take my first few steps, I’ll get "the look". I hate it. People will usually say "What's wrong?" or "What happened?", but what do you do? I don't want people to think of me as one of those people who just waits for someone to ask something like that to give them a reason to just moan and groan about their problems. So I’ll just say “oh nothing" and keep on going. I’d hate to think of what might go through someone’s mind though, because sometimes the way I walk with a limp people probably think I have to go #2 or something :)
 
It's a catch-22 man, because I don’t want to be like “Oh, I have Lupus” but how are you supposed to answer the "What's wrongs"? Not only that, but it's frustrating too, because if someone does see me limping one hour and then in the next hour my knees or hips will loosen up enough to where I don't have to limp, I could only imagine what people think....."wait, one second she's limping, the next she isn't.....faker". I hate to say it like that but, hey...I'd think the same thing.

My Lovely

It's no secret how much I love my dog Maia. She is, hands down the best dog ever!! Obedient, loyal, beautiful, loving, cuddly, loves kids, knows when to bark and when not to bark, she knows when I'm feeling good and definitely knows when I'm feeling bad....you get what I'm saying, she's just the best.

See my boyfriend lives over an hour from me so sometimes when it comes to the planning of when I stay there and when I don't is a pain in the butt because I always have to take into consideration picking her up, bringing her back and it all coinciding with my work schedule, etc., etc., etc.

So with getting everything figured out for Christmas week, I decided to leave Maia over at Anthony's for the night (something I swore I’d never do) so I could go to my house and get everything packed and settled in my car. I will never do that again. NEVER! I miss her so much it's ridiculous. I'll admit it, ridiculous. When I woke up I looked down to have her come up for our morning 5 minute cuddle, and she wasn't there....when I got out of the shower, she's usually all snuggled up on the rug in front of the shower and after I dry off I say "excuse me" and she obliges and kindly gets up....this happens every morning. This morning she wasn't there.

So to make matters worse on my way to work, I notice in the truck next to me this gorgeous dog with his/her head hanging out the window and just loving life happy as can be! And yup....you guessed it, I started to cry. Ridiculous! It’s crazy how one can love their dog this much. She is, after all……..my daughter.

And another one...

So, I don't know what my problem is lately....seems like even the smallest of things have been sending me into tears! Like on my way home, deep in thought as usual, I catch some Christmas lights out of the corner of my eye. I look over and it is a homeless man who decorated his shopping cart with Christmas lights....FUNCTIONAL Christmas lights. Then when I realized it was 48 degrees outside, I lost it. Cried like a baby. To me, things like that just aren't fair.

You can't take life for granted for one second....don't take your full belly, your warm, toasty toes, your family, your friends, the bed you sleep on or even your nephews first haircut for granted.......take 2 seconds to just say thank you or I love you.

My very first.....

So, I'm new to all this. Blogging I mean. Never really thought I'd get into it, but I was inspired by a friend of mine who has a pretty amazing blog outlining her life with her family....challenges and all. I don't even know if I really have a lot to say, but I guess we'll see.


My other inspiration for starting this blog is my disease. Lupus. What a bitch she is too. I was diagnosed over 7 years ago.....sounds weird saying that....and I thought I would start something to talk about what it's like to go through it. I probably should've started the blog back then because oh what interesting stories I would have. But, no need to live in the past.....it's all about what lies ahead and building my future.

For the most part I think I'm pretty lucky when it comes to my Lupus. And by that I mean, how it affects me, how I handle it and how I learn from it. I know there are a lot sicker people out there than me and that makes me thankful. But that doesn't mean that I don't get pissed off about it at times.

I'll never forget my very first flare....the best way to explain it was I hurt. I hurt everywhere. My arms, my jaw, my neck muscles, my legs, knees and feet.....and I knew with my medical history (ITP and splenectomy when I was 17) that something was up…..before going to the doctor and doing my own research on the internet I was convinced that I had that disease that the call “the Stone Disease” because eventually you become like a stone figure. Well because of my crazy health background doctors were able to diagnose me rather quickly with Lupus. Which I’m so thankful for because I hear of it taking years for some people to be diagnosed with Lupus.

Originally I was put on Methotrexate which sucked…sucked, sucked, sucked. That’s when my Rheumatologist at the time suggested Plaquenil. So I went on Plaquenil and that worked for me very well. When I was better and not flaring for a couple months I decided to wean myself off of it. I don't know if that was the best decision to do, but for me then I thought it was. My main reason was because for one, I don't have kids and with all the health problems I've had I'm pretty scared to have kids....don't want to flare up during pregnancy, don't want to pass anything on to my little one and most of all I don't want to be dependent on any sort of drug when I do get pregnant. So I thought it was the best decision to not be on it if I don’t HAVE to be. Well, that worked for a while but of course I went into another flare a year or so later....so back on Plaquenil I went....then I weened myself off again. That cycle happened a total of 3 times. Yes, I said 3 times. And if you know me at all the stubbornness that exudes shouldn’t surprise you at all :)

Ok, again, enough about the past - present day....I started to flare again a few months ago....November 23rd....back on Plaquenil. Things are looking good, I still have a lot of pain at night, but at least right now it's not EVERY night. It's been rather cold the last few days so that makes it a little difficult.....and it's funny....every time I think about the cold and how it affects my arthritis even when I'm not in full flare, I could NOT imagine still living in Maine. I think that would just cripple me in the winter. And I can't imagine all of the Lupus sufferers who do live in cold states...craziness.

Well, this blog isn't only going to be about my Lupus...that'd get rather boring....but I do want to warn you that I will bring it up now and again, because as positive as I try to be about life, I have my bad days too and it is a part of my life. I want to get into a lot of stuff.....post a lot about nutrition, meditation, people who make me laugh, etc…..but I’ll get into that later.

In signing off on my very first official blog, one thing I will never take for granted and will remain thankful for in the conscious...is my life, my family and my friends. I know that no matter how hard it gets for me and that no matter what is thrown at me, there is someone out there....well actually a lot more someone’s out there who are worse off than me. So today I am thankful.