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.