Thursday, April 17, 2008


Thursday’s are a HARD day for me. I think I have said it before, but for some reason today is especially bad. I feel like I need toothpicks to hold my eyes open. I know I do it to myself, but it is so worth it. The activities I get to be a part of on Wednesday’s are the most enjoyable thing in the world! I hope to never have to give it up. I just wish there was a way to get rid of the exhaustion side effect.

With all that being said I can’t help be still be elated over so many things that are going on in my life. God is so good! It is an interesting mix of emotions when you body feels as if it’s going to fall over and your mind is wanting to run wild with joy. I want to shout from the roof top how great our God is, how much He shows me His love and how grateful I am for the many, many blessings I have encountered the last couple of weeks.

In saying all that, I am reminded of something I was struggling with last night in my quiet time before AWANA. What do I pray for? Do I pray healing? Do I pray for strength? Do I pray to learn? Do I pray to be an example to other Lupies? Do I pray to be able to handle the many medications I am on? I guess I should be praying for all of that, but for some reason praying for healing seems so wrong, so that is why I thought of this problem. Not because I don’t want to be healed, because I can’t imagine what one day would feel like just being normal. I just know in my heart that God has something to show me through all of this…. He is an amazing God and I know I can only get through this because His strength is holding me through. So I sign off on my dreaded Thursday, enjoying the blue sky peaking through dark gray clouds (literally and figuratively speaking) and enjoy the warm sun on my face for just a moment.

I am thankful for all of you and the blessing He has shown me through you.
Happy Thursday!

Tuesday, April 8, 2008

Lessoned learned

I had an energy drink this morning...
I went to the doctor...
she gave me a pill for energy...
I took the pill for energy...

Lesson learned.... pills for energy & energy drinks don't mix. I am shaking and ready to BOUNCE off the walls... I guess I will have a good afternoon.

Is there such thing as too much?

Do you ever feel like you are taking too many pills?
I went to my rheumy today, I am really feeling like crap. I have been dealing with this flare up for a month & I have a feeling it is going to get worse before it gets better. David says I am on too much meds. But honestly when I’m not flaring I doing great. I just can’t kick this flare. I didn’t get to see my normal doc, so once again I had to fight steroids. I refuse to do them, they are so hard on me and they don’t work!!!!! So she gave me more meds. I got my “happy” pill back (provigil), I LOVE this stuff. The only down side is when I forget to take it I hit a large brick wall and feel worse than I ever thought I could. But for now I am going to enjoy it!! I look forward to this afternoon when I am in the midst of it’s effects. I also got something for my pain in hopes of killing off the chest pain so I can breathe. If these two pills work I will be SOOOOOOOOOO elated!!! . So Saturday-Thursday I take 8 pills and on Friday’s I take 14! Holy moly!!! So next time you are at the pharmacy you can think of me.
Enjoy your day! I know I will .

Oh a funny “mommy moment”
I call my prescriptions, “drugs”… I have a 6 year old who just learned that “drugs” were a bad thing and you should say “No”. Good for him!!! But the look on his face when I mentioned I needed to take my “drugs” was priceless. We had to have a talk about how it’s ok to take drugs your doctor gives you. So I have to learn NOT to refer to my meds as “Drugs”. Doh! Things you don’t even think about until your little one points it out. I can just see him in school or Sunday school now… “My mommy takes LOTS of drugs every day before she goes to work & before bedtime”. Oh boy!

Monday, April 7, 2008

Another Monday

well it was a ROUGH weekend!!!! I think the medication for my fibro has started to wear out it's welcome. The last three mornings I have woken up so stiff that tears burn my eyes. I am still having serious issues breathing. My regular doc is out this week, so I am going to see someone else there. I am really reluctant to go because last time she said my breathing issue was a primary care thing. But when I went to the ER he said it was a lupus/fibro thing. I am just feeling defeated today because I don't think I will get answers. My mind also feels like mush. I can't remember names or what I am doing. It seems worse. It is so frustrating.
I guess it's time to think positively- if I can remember why I'm trying to think positively. I will update you on what the doc says tomorrow!

Friday, April 4, 2008

Hanging in there

I have been hanging in there the last couple of weeks. I am still having trouble breathing, but it seems useless to go back to the doctor to have them tell me it's lupus or fibro. That gets old, the "Sorry, I can't help you, just let it pass". That's the reason I quit treatment a few years ago. David seems to think it's my medication, but the medication is helping in so many other areas.