Doctors are not God's

I've been thinking a lot lately about the Kylie Minogue quote this week about being misdiagnosed. In regards to her battle with breast cancer, she said, "This is an opportunity for me to say something that I have not said before, I was misdiagnosed initially. So my message to all of you and everyone at home is, because someone is in a white coat and using big medical instruments doesn't necessarily mean they are right." I could not agree more.

If I had given up every time that a doctor told me there was nothing wrong with me, I would probably be dead by now. It is amazing to me how doctor's will look at your chart rather than listening to you and jump to the easiest diagnosis so that they can move on to the patient in the next room. It is so hard for anyone suffering with an invisible disease to find a doctor who will really stop, sit down, and listen to your plight.

It took me three years to find the right doctor who decided that even though all the tests said there was nothing wrong with me, that I couldn't be feeling this bad if nothing was wrong. I had to fight every specialist I met with, every nurse who walked in and said you were looking great, what could be wrong with you? Fighting is a daily part of life for Lupus patients, but it's unfortunate that the people we look to for guidance and assistance make us fight harder, not less.

I urge every patient, not just lupies, to ask questions of your doctor. If you don't believe deep down in your gut that what they are saying is right, get a second opinion! This is your life, your body and you know it better than anyone else. Stand up for yourself and get the right diagnosis. It could literally save your life.

"Everyone in the world is constantly fighting an internal battle. A battle between what the brain know is right and what the heart knows it wants."
~Oprah Winfrey

Frustration

It's incredible how much frustration plays into the life of a Lupus patient. I'm sure people may feel sorry for you, or wish that you were there at that party, but what they rarely understand is how much I wish I was at that party. I'm going through a pretty bad flare right now which makes leaving the house hard right now.

Laying around the house watching TV usually sounds great when you're crazy busy at work, but to be honest, it gets old really fast. I'm beginning to wonder if the rest of my life is going to be spent on my living room couch. I have great friends and family that support me and run this incredible foundation with me. I so wish that I could be a better contributor to their work. I would love to be digging in and doing the hard work, but that never really seems to even be an option.

Being extremely frustrated also comes across as snippy or rude to the few people who really are trying to be kind to you. I can hear my voice getting short with people and cringing at my lack of ability to stay calm and cool. I hurt, I'm tired, and I can barely move without pain radiating through my body. All of that makes being a good friend or family member harder than you can ever imagine.

I so wish I could babysit my niece and take her to the zoo and carry her through all the exhibits. I've yet to ever be physically capable of doing this and it makes me both sad and frustrated at the same time. I want to pitch in and take her for the night so her mom can get some sleep, but I can't do that either. I know that I should stop dwelling on the things I can't do and do the things that I can, but when your options are limited like mine are, that gets harder and harder.

I'm going to try and buck up and be a good sport, but I have no doubt that all you lupies out there no exactly what I'm talking about. Hang in there my friends and I will do the same!