Walk Giveaway

Like last year I will be giving away a Disney gift basket that will include 2 one day park hopper passes to a Disney park*. Pictures will be posted next couple of weeks.
Or a lap quilt, made by me, in the fabric of your choice...



Here are the details oh how you can win:

1. 1 raffle entry for every $10.00 you donate.

2. An additional raffle ticket each time you post it on your Facebook/Twitter page (Please tag me so I can keep track)

3. An Additional raffle ticket if someone donates because of your link

4. THREE more tickets if you join our team (Seattle walk or Virtual walk)

5. An additional ticket for each of your friends that join the team

6. Raise $100 and I'll toss in another ticket.

Please contact me if you have any questions.

*(Park tickets will be available mid December)

Donate to my page by clicking here

Join our team here

September

It's September already? Wow!

I saw my Rheumy last week. The meds she had given me in July made me sick, really sick. I was up all night sick and I called and said I was done with them. I didn't see a difference until after I stopped taking them.

When I saw her we had a long talk about the next steps and Benlysta was mentioned. For those that don't know, Benlysta was just approved this past winter. It is the first Lupus drug to be approved in over 50 years (Roosevelt was president).

The problem? the waiting period to get it approved with my insurance. I sit here a week later jumping everytime my phone buzz's, which happnes to be a lot. I'm ready, I want to take this step. I have heard so many positive expierence's with Benlysta (Yes, I've heard the bad ones too), that I am anxious to try it. I want to get it running through my body now. Why do the insurance companies have to take so long to determine if my doctor is right or not on my treatment... So I wait. I was told that it could take two weeks. TWO WEEKS? don't they get how crappy I feel? Or how once I get approval I have to make the appointment and wait for the office to get the drug? Don't they get it? I am sure I wont be able to get it til the middle of September, but it's so hard to wait. I just want my energy and my health better. I want the pain to go away!

I've also been pimping out my walk page like no body's business. I am passionate about Lupus awareness, I want a day when I don't have to tell people what it is. Will that ever happen?
Click here

My "Why I walk" Story is on the link above, and yes there is a Disney Gift Basket up for grabs that will be raffled off for one lucky winner. Help me today.

Why I walk

If you don't have me on facebook or twitter than you haven't seen this link... Check it out:
http://www.lupus.org/webmodules/webarticlesnet/templates/pacificnw_news.aspx?articleid=4012&zoneid=257

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

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 WebMD.com 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.

Update

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...

Walk

The walk is less than 3 months away and I am busy putting stuff together to make this years walk a success.

I will be putting together a Disney gift basket that will include 2 one day hopper passes that will be raffled off after the walk.

Click here for our team page

Each donation of $5.00 will receive 1 entry. As we get closer any posts on twitter & Facebook will receive another entry (Please tag me in the post or use my twitter name @BHCori).

I willl post photos of the gift basket when I return of Disneyland in August.

Sacrifices

Because of Lupus I have learned to make a LOT of sacrifices. I have had to learn to say no and to listen to my body. That is so incredibly difficult.

Last week was especially hard. First it was the Fourth of July, stupidly I spent two hours that morning in the yard and then decided to do some serious house cleaning until my friends arrived for a BBQ & Fireworks. Now I have learned my lesson in past years and took the 5th of July, which I basically spent in bed.

The week only got worse, but it was my own fault. Wednesday I started cleaning out the garage, Thursday I was in bed. Friday we had a garage sale and I went to a concert.

I know, some of you are saying a concert?!? what are you THINKING? I'm thinking that there are few things in this world I will go to until I die.

And my favorite all time boy band is one of those things. New Kids On the Block (NKOTB) are touring with Back Street Boys (BSB). I left at 2:30 for a 7:30 show. Picked up friends, sat through traffic and made it to Tacoma by 5:00, by this time I was already tired. Now my first "plan of action" was I would sit when BSB was on stage cause they are not really a favorite, but that failed. Once it started I was so entertained. I have to say 3/4 of the way through the 2.5 hour concert my body said no more. I was seriously ready to cry. I ad noticed I was feverish on the drive down but I ignored it. I choose to sit when the BSB were back on stage. I must admit even though my friend has been with me for several years I felt embarrassed that I couldn't hang for that long. Embarrassed that she offered to step outside with me so we could cool down. At this point I hated my Lupus more than I ever have before.

Let me tell you it only got worse from there. I have waited 20+ years to meet Donnie Wahlberg and Jon Knight, Donnie sometimes will go to a resturuant after the show and meet fans. So guess what I did... yep. Spent an hour getting away from Staduim traffic and hit the closest Denny's where we waited and waited. I seriously could not hold my head up. By 1:30 I couldn't do it anymore and I was the driver so I called it a night. Someday right?

I got home a 2:30 and couldn't sleep past 6:30. I was so tired I wanted to cry, couldn't even take a nap that day. Yep I over did it.

So now I struggle with do I go through that again? Do I sacrifice my body and every thing I need to do for the week after just for a few hours of entertainment... my heart says YES! my body says NO!

My husband has said I could go on the cruise next year.. if there is one, but can I handle it? Can my body go through that? I just don't know.

I hate the sacrifices I have had to make for Lupus. I hate the sacrifices I "should" be making.

Yesterday we skipped church so I could rest, which didn't last long. Went for a walk and then played softball. Sad to say today I have my feet elevated at work and I am in pain and my joints are swollen. I guess that's not so bad after having an amazing weekend, huh?


What sacrifices do you refuse to make because of your chronic illness?