Tuesday, September 20, 2011

Lupus is painful

For the last couple of weeks I have needed some heavy pain killers to get me through the night. But I always fear becoming addicted and needing them to sleep. So last night I decided I can do it, I can sleep without them. Boy was I wrong.

I am not a big pill popper, so I always look for ways out of taking medication. But with narcotics I am super careful. I don't like to take them every night and I don't like to take them after midnight (for fear of not being able to get up in the morning).

So last night I thought I could handle it. I thought I could sleep without issues. I was sore when i laid down but I didn't think much of it. Then at 1:00 I was awake, in pain. A lot of pain. I tried to get comfortable. I just couldn't. The only way I can describe it is it feels like someone beat me with a baseball bat. The covers on the bed were too heavy, the weight of my body on my hips shot pain down my legs. So I got up. I wasn't willing to pop the narcotics.

I watched tv, walked around the living room. Sat down, laid down, anythin position that would ease the pain for just a few minutes. After an hour of bad TV I knew I had to try and go back to bed and yes take those pain pills.

I opted for my lesser dose meds in hopes of being able to get up in the morning. it took anoth 45 minutes of me laying there getting comfortable and waiting for the pain to go away. When it finally did sleep came back. Getting up this morning was extremely difficult. My joints were stiff and bearing weight on my joints was painful. But I have to get up. If I let Lupus win every day I will go no where. I need to win the battles.

BENLYSTA Update: I was approved for Benlysta over a week ago. But we have to go through my mail order pharmacy. Not sure why but it's frustrating. Last Monday I called and was told the RX was written for the full amount my insurance allows so they had a call into the doctor for a new RX. Then Saturday I get a call asking if I approve the medication and if I approve it to be shipped... um YES. But they can't ship it until they talk to my doctors office and confirm they will receive it. So HOPEFULLY yesterday my doctors office called them back and confirmed that yes they will receive the medication so it would be shipped. This is really frustrating. And to add to this awesome flare I am angry. Could the Benlysta have prevented what I went through? I don't know, but I am hopeful that I wont have to go through another night like that one.

Tuesday, September 13, 2011

I'm Tired

Like that's a shock.. I'm ALWAYS tired. Yesterday, after almost three weeks, I got word that my insurance approved Benlysta. I was so EXCITED! The catch? it had to go through a mail order pharmacy (their pharmacy). I didn't think much of it until today. I called to find out when to expect the med only to learn that first, they had a question for the doctor so they were waiting for a call back. Second their processing time is 5-7 business days. I was so stinking annoyed. 5-7 MORE days? This is so stupid.

I realize this is probably another lesson in patience, but I don't feel well, I want to get it started. I WANT TO FEEL BETTER!!! Deep down inside I know it will take time for Benlysta to get in my system. But when you feel like I do that hope of getting in my system soon so it can start working is there.

So I sit and wait. It sucks. I guess the good thing is it's in process and the wait wont be that long, right?

Wednesday, September 7, 2011

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

Thursday, September 1, 2011


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.