Sunday, May 15, 2011

Are you afraid of the big bad wolf? Me too.

I decided to start a blog about my life as a 28 year old woman living with Lupus.  Some people don't even know what Lupus is.  I knew very little before I was diagnosed. For that reason, I understand why people don't know what it is and how it affects me ... and get this...a whopping 1.5 million people in the US.
Since this is my first post I think I will define this disease and how it applies to me.  Don't worry, this blog isn't about statistics or diagnostics.
What is it?
Lupus is like a controlling boyfriend or an overprotective parent.  It protects you too much..
Something happens in your body's chemistry that causes its immune system to attack the good cells, not just invaders (i.e. bacteria, viruses, germs) Your body is constantly producing bright and shiny new cells and so Lupus is constantly fighting that. What a stupid thing to do! I know! 
So, how does this affect the person with Lupus?  I will give you my top 3 Lupus symptoms.  These are the ones that greatly affect the way I live.
The body's process of destroying it's own cells makes the person with Lupus very tired all the time, Red Bull and Starbucks be damned.  When I say tired I don't mean,"I just ran five miles," I mean.. "I'm too tired to get up and go to the bathroom." My body is constantly fighting itself  and leaving me with no peace or energy.
It also creates pain.  I'm in pain all day and all night and I don't ever get a break from it unless I'm medicated.  Even with pain medication, the pain is not gone, it's merely tolerable. As I'm typing this right now, I'm extremely uncomfortable. I take medicines that would put any normal person into a pseudo-coma, but for me it's normal.  My knees are a major source of pain for me..
Last, but not least, the sun causes the pain and fatigue to intensify.  I can wear a high SPF (I keep a 50 in my purse), but it won't stop the inevitable.  My skin gets red within one minute of me walking outdoors and then the craziness starts.  Fatigue, pain, and red skin: Could I get any sexier?! Why yes, I can.  The rest of the day even when I go inside I start getting red splotches on my skin.  If I wear SPF I don't get a sunburn, there are just areas of my skin that start burning and by the time I look down they are fire red. It can go away after 10 minutes or it could burn like that all night. There is no good rhyme or reason.

Okay ... enough of that!!
With anything, you can't understand it until you live it.  So, if you read my blog.. you're living it with me.  For so long I have kept my disease private and not invited too many people into my world for fear of judgement and pity. Then I would wonder why I felt so misunderstood and at times even lonely. Pushing people away so they won't see you at your worst is cowardly and I'm done with it.  This is my blog and if you don't like it.. don't read it.  Simple as that.  I hope you will though.  My reason for doing this is not so I can spout out all my feelings and have people tell me how valid they are.  My reason is that I have spent painful days and sleepless nights online searching for what it's like to be young and live with Lupus.  I didn't find it and it was discouraging to me.  I hope someone finds this and can see that the way they are feeling isn't uncommon.  To do this, I will include writing, pictures, and video! You aren't alone and I hope you will connect with me! That being said, welcome to my world.  I feel like I'm decent at making the best out of a bad situation, but I'm wanting to get better and stand up for Lupus sufferers by just making people aware. I might moan and cry and whine at times.. but I still will try to make a person laugh in the end.

By the way, Lupus is the Latin word for Wolf  .. rawwwr


Maddy said...

Whit you are such an inspiration to me. It takes so much courage for you to open yourself up. I wish I had half the courage and strength you had!

Anonymous said...

What happened to the other picutures you had on your post?

Whit said...

Hi Anon, all of the pictures are still up. Sometimes it takes a minute to load them. Try refreshing the page. If this still doesn't work and you want to email me I can send them to you with no problem.