Friday, August 12, 2011

Why I walk

If you don't have me on facebook or twitter than you haven't seen this link... Check it out:

This site changed their story, so you can now find my Why I walk Story HERE

Tuesday, August 9, 2011

What is pleurisy?

What is pleurisy?
Pleurisy is swelling (inflammation) of the thin layers of tissue (pleura) covering the lungs and the chest wall.

The outer layer of the pleura lines the inside of the chest wall, and the inner layer covers the lungs. The tiny space between the two layers is called the pleural cavity. This cavity normally contains a small amount of lubricating fluid that allows the two layers to slide over each other when you breathe.

When the pleura becomes inflamed, the layers rub together, causing chest pain. This is known as pleuritic pain.

Pleurisy is sometimes called pleuritis.
(Above was taken from the defination).

So that above is how pluerisy is described, but let me tell you about it in my own words.

Your sitting at your desk, making dinner, driving or even laying down and all of a sudden my chest gets the stabbing pain. With every inhale I feel like my lungs are being stabbed. And with every exhale they feel the same. My entire body tightens up in hopes of enduring the pain. How long will this one last? Relief, when can I get some relief. If I hold my breath I get a little relief, jusst don't move my lungs. Then I take shallow breaths as long as my body can handle it in hopes of less movement. By now I am usually hugging a pillow or something close by and climbing into a ball in hopes of some relief but none comes. It can wake me in the dead of night. It is one pain I can't hold in. It takes all that is in me not to cry out and hope for relief soon.

You see, pleurisy can come and go whenever it wants.

By the time it goes my back hurts, my arms hurt and my head hurts from all that I have done to relieve the pain that really can't be relieved.

Right now I have had several attacks in the last 24 hours. Attacks that are bringing me to tears, attacks that even my strongest pain med doesn't even touch. Attacks that lingere in my arm and collar bone area until the next one. Attacks that just make today painful.

I wouldn't wish pleurisy on my worst nightmare. I wouldn't wish it on anyone. It is something terrible. But it's just another sign for me that I have Lupus. That I will never have a day without pain and that this will never go away. It's also a sign that meds are working and we need to look at "what's next". It's a sad sign. But one I am going to share with anyone who listens.

It's true Lupus sucks hard core. But we need to raise our voices and make it heard. So stand up and be heard. Find a walk in your area. Share this with someone who doesn't know what lupus is. Help us raise awareness.

In the meantime I'll be curled up trying to relieve this instense pain.

Wednesday, August 3, 2011


I am going to see if I can get through this post without completely losing it.

On July 13th (My birthday) I had an appointment with my new Rheumy. I was so nervous. I even had a panic attack while waiting for her. It was crazy. Within the first few minutes I knew she was going to be a perfect fit.

We came to the conclusion that the Rituxan was not going to work for me (Sucks, all that crap I went through and the weeks worth of bed rest). She also discussed trying to manage my Lupus and not my symptoms. I didn't realize before that we weren't doing that. So I listened intently and we created a plan, one I was very happy with.

I left the doctor's on a high note with prescriptions in hand. When I got back to my office all hell broke loose in my personal life. My brother's 18 month old nephew drown in a back yard pond.

My little brother lives in Salt Lake City and me in Seattle, 13 hours apart. Plus my brother has some severe mental health issues (Manic Bipolar to just name one). I didn't think, I jumped in the car and headed home crying my eyes out. Grabbed my nine year old packed and hit the road. Planned on driving until I got there.

The reason I post this is because my lupus has been calm through all this stress. I was awake for 36 hours without a break and emotionally falling apart, but my body held it together. By the grace of God I have made it with no flare. I didn't even stop to fill the new prescriptions. My body held it together til I got home and started the new meds.

Even three weeks later I am feeling pretty good. The stress of what my brother and his wife are going through still falls heavily on me, but I am doing ok physically. This is a shock to me. I have really struggled with what it means lean on God physically and I think I am learning that lesson during these times.

I hope my Lupus friends have what I have in God. I pray for each of you daily that you get the support from the One who can truly give you that support.

Much love...