Here I go...

I've never really understood blogging...I kind of thought it was for people who didn't know what a journal was. Judgmental, yes. But in my defense, I didn't completely understand the world of blogs. We have Facebook, Twitter, Myspace (which I'm not sure anyone uses, but still). My point being, we have one too many ways to put our personal life, or rather what we want people to see, on display, so having a blog was just one more way of sharing life with the internet, aka anyone knows how to use a computer. 

Well, I've decided to start a blog. I don't know if anyone will read it, but my hope is because of what I share, it will help someone. Even if it's just one person, I will have achieved my goal. I'm going to try to summarize so you will have an idea of what I will be sharing here. Disclaimer: things not posted in this so called "summary" is not a complete list of what I will be sharing here, but it gives you an idea.  

My name is Julie. I am 26 years young, mother of two and I have RSD/CRPS (whatever you want to call it), Fibromyalgia and a list of other random, unexplained ailments. RSD/CRPS and Fibromyalgia have consumed my life for the past two years. It's an invisible disease and also one not well known or understood by friends, family, strangers and even worse, doctors. I don't even know where to begin when describing what it is like to live with this disease. The description I have used thousands of times (and I ask you close your eyes for this so you can get the full effect. Well, read first, remember what I said and then close your eyes and invision): imagine emptying your veins of the blood that runs through them and then refilling them with lighter fluid or gasoline: your pick. Now, imagine lighting that match and placing it on your vein, letting the fire consume the inside of your body, flowing through your legs up into your back, spreading across your neck and shoulders, all the way down to your fingertips. And then once your body is full of fire, invision thousands of bees stinging that skin which already feels like it's burning from the inside out.  If you really want the true feeling, go turn on the burner on your stove or light that fireplace and then stick a body part, any body part, right in the fire. Not above it, beside it, but right on it. Now that you have done that, hold it there for weeks, months, maybe even years. That is what a flare feels like to us. You may think it sounds a bit overdramatic, but this is what life is like for me and for the countless others who suffer from this. And the worst part is, while sometimes you can see the damage of this godforsaken hell our bodies go through each day, most days it is all internal and the only evidence of our disease is the pain we feel. To really get a good understanding, my family and friends have read through www.rsdhope.org.  If you can't still can't envision the pain of this disease, maybe you're a visual learner and this would give you a better idea. See the nice red lettering? That's what I have and I like this visual because it puts it into perspective just a bit. 

And it gets worse: the victims, and yes I say victims, of this disease, are not the only ones who suffer. It's the children, the parents, the siblings, friends...pretty much anyone who is in the life of an RSDer (or should I say, those who stick around after they have seen how much maintenance and time goes into this disease). I, personally, have lost many friends and even family because this was too much for them. But, for those I've lost, I've gained many more who I know will stick by me no matter what happens. It is an isolating, gruesome, depressing disease that wreaks havoc on people. But the one thing I do know is, those I am friends with who have it are some of the strongest, most amazing people I know. If it weren't for this debilitating disease, there are many people who would not have entered or left my life, both of those being of equal importance. The ones who have left my side, I don't think of negatively. I simply think of it as addition by subtraction. You may have to think on that one for a minute. :)

I feel like I spend most of my time talking about or explaining my RSD. But I've decided it's not going to consume my life. Since my diagnosis, most of my time is spent in bed, at the doctor's office or the hospital. I work from home, when I'm lucky, people do grocery store runs for me and friends have stopped asking me to go out because they know I won't be comfortable sitting anywhere too long. I don't feel sorry for myself: I feel sorry for my friends, my family, for everyone in my life who has done something for me because it seems I'm the one who always needs helping. My son Cameron, who is 6 and my daughter Ashlyn, who is 5, ask me everyday how Mommy's pain is today and at night when we say our prayers, they never leave out the part where they ask God to help Mommy's pain so we can all play together. My kids have learned how to do things themselves because they know it's hard for me to lean down to give them a bath or to stand too long in the kitchen cooking big meals. My kids will yell "Mommy, don't do that! Remember, your pain?" if I am doing something the doctor has restricted me from doing. They help me clean, they love putting laundry into the washer and then the dryer (we are working on folding and hanging), they try to make their beds and pick out clothes for the following morning. While I am so proud of them for their strength and level of maturity, inside it's heartbreaking knowing they have to do these things because on most days, I can't. 

The funny part is, RSD is just a part of my crazy life. Since this blogging thing is new, I will spare you from further details on exactly how chaotic my life really is. There is a lot more to me than this disease, things I know others can relate to. So just because you may not struggle with a disease or an ailment doesn't mean this blog won't give you something you can relate to. I am happy where I am in my life. Many of my friends wonder how I don't fall apart because of everything life has thrown at me (and this is not just the RSD we are talking about). I hope with what I share, someone will take comfort in knowing they aren't alone. And I promise, there is a lot more to come...we've only hit the tip of the iceberg here. Whether you're a single mom, struggling financially or struggling in a marriage, have a disease that affects you every day or feel like the world is coming crashing down on you, just know, I have been there and I'm still alive and walking (well, somedays with a cane, but you get my point). Your circumstances don't define you, so if you feel they are, take a deep breath and think long and hard about who you want to be and start defining yourself. 


Until next time...