Controlling the Uncontrollable

I'm sorry to have to say that I am back in some kind of a flare. There's this terrible flu bug going around and I think I caught it somehow, but I am in such severe pain that I feel like this is never going to end. It always seems that just when I'm getting back on my feet and starting to get back to a real life, some kind of Lupus related problem pops right back up into my life.

It is so exhausting to have to go back on the pain pills, not being able to drive myself around, and being completely dependent on other people. It is so frustrating to wake up one morning and lose all your freedom and independence because your body is in such severe pain. I can't remember the last time I got a full month of normalcy and am beginning to wonder if it really is just a relative term and feeling crappy is my new normal. Good grief, that's a depressing thought isn't it?

I spent the whole day yesterday at the hospital doing labs, xrays, and more tests. When is there going to be a test or a doctor who can figure out why this disease has control over us rather then the other way around? What is it going to take for someone to learn enough about Lupus to figure out what is causing this misery and what we can do to make it better?

We had a board meeting last night here at my parents house and it was so inspiring to see all of these amazing people donating there time, putting in the work, and really wanting to make change. I love them all and am so proud to be working with them, but it is also so overwhelming some times to think of what a challenge we are facing. There aren't enough of us out there fighting this disease, raising awareness and trying to change it. I'm not sure how much effort is going to be enough to change this disease, but I am sure proud that the people around me are still trying hard each day and getting us one step closer to a cure for this crappy disease that can make life so hard.

And life is hard. It's hard, it's a struggle, but it's all we got, so we make the best of it and appreciate the good times. Even though this is definitely not one of those good times for me, I'll certainly be looking forward to the day when I wake up without pain and can get up in the morning and be excited for the day ahead. Hope you all are in less pain then me and finding a reason to smile!


"Every day may not be good, but there's something good in every day."
~Author Unknown

Back to You

Hello guys and gals, I have finally returned! I am extremely pleased to tell you that I am finally getting back to normal again. After months of trying different drug combo's, they've finally had some success. I woke up this morning, got out of bed and got ready for the day. Now, after that, I'm not quite sure what to do with myself. That activity alone usually took all day so now the only problem is remembering what it feels like to have energy again to get out and do something.

I'm embarrassed to say that I really don't recall what I used to do every day. It's been years since I've had a full week without getting sick in one way or another. While I may be struggling to figure out what to do with myself, I suppose I could look at it as a world full of possibilities. I can return to my non-profit work, I could look for classes to sign up for . It is a little overwhelming.

For today, I am going to try and work my way down my to do list which has been here for the past nine months and hopefully I will feel better after actually accomplishing something for the day. For those of you out there in the same place as I am, I hope that you find a rewarding way to spend your day. For those of you who are still not well or able to get up and going, I wish you energy, a pain free day, and something to look forward to doing when you get better.

"Passion is energy. Feel the power that comes from focusing on what excites you."
~Oprah Winfrey