Wednesday, January 20, 2010

My new favorite item



My new favorite gadget. I have to say I LOVE, LOVE, LOVE this. I hate having to ask my husband to open my pill bottles and with my kids in the house I don't feel right about getting regular caps.
This tool is a wonderful gadget. The magnifying glass may come in handy some day but for now it just opens my bottlesClick here to learn more

Wednesday, January 13, 2010

immunosuppressant

I have a love hate relationship with my immunosuppressants. I LOVE what they do to me.. I feel so much better when I'm on them. My Lupus rarely rears it's ugly head and I have enrgy and no pain. I just feel fabulous.


My hate is because if you get sick you have to go off of them until you are better. So right now I take one shot a week. On Monday night I knew I should have held off a day or two because my brother and his family spent the whole weekend at my house and his wife & both kids had a cold. But I thought, no... I wont get it. Sure, I've kissed, hugged, shared food with my nephews but there is no way I'm getting sick- I feel great! Well today I woke up with a soar throat and nose issues.... NOOOOOOOOO!
so when Monday comes around I will need to make a decision. take the shot or not. last time I had to go off my shot I suffered horribly. So here is to hoping that my body will kick this cold ASAP and not have me make a decision to take it or to not.

Thursday, January 7, 2010

Why can't I sleep????

You know what sucks about not being able to sleep? that you can't get up and do anything cause you will wake others up and you are begging your body to just drift off. not being able to sleep is sign one that a flare is coming. Some would think that my body would be CRAVING rest when a flare is on it's way, but no. Mine says "time to get up".

I am a greedy sleeper. I like my sleep and I do not like to loose one minute of it, so you can imagine that I am VERY cranky today. I have a big weekend ahead and i don't have time for a flare.

Hmmmmm.... now that I type that, I realize I say that every time I have a flare.

Happy Thursday!

Tuesday, January 5, 2010

Joints

JOINTS: (N)
1. junction between bones: a part of the body where bones are connected, e.g. the knee, elbow, or skull.
2. junction between segments of invertebrate body: any of the points of connection between movable segments of the body in an insect, spider, crab, or other invertebrate
As I see this definition of the word "Joint" it makes me chuckle. Joints to me are more than just where the body connects... they are a source or REAL pain. My last chest xray showed signs of arthritis in my back- wait your back has joints? I am always shocked to learn something is a "joint" because I never really thought of it that way. My ear pain, is actually my jaw- which is a joint! this probably doesn't shock most people but it shocked me... just another thing to blame on Lupus.

Today my index finger is in severe pain. I'm trying not to use it at all but when my job is sitting at a computer that makes it IMPOSSIBLE. I look like a dork trying to type with nine fingers and I'm dealing with a TON of typos.

Cori's definition of Joints:
A source of pain, a place where your body connects and can cause severe pain at times.
I wish I knew what I did to my finger but I'm sure it's just Lupus related as everything else is. Time to continue my week.

Monday, January 4, 2010

I'm back

It's a shock I know. But I think it's time to start keeping track of all that is going on in my Lupus world. I sure have missed having a place to dump it all and recent comments made me realize that people are actually reading this!

The remainder of this year was ok. I had some severe flairs and one that lasted several weeks. I am getting better at managing them, but sometimes the pain is just so unbearable. I also decided to help out with the Seattle Lupus Walk in October and had such a great time I decided to sit on the committee again. It was so awesome to see our ideas and hard work become a huge success.

In November I suffered a BAD flair with massive chest pains. It was to the point that I couldn't move. My Lupus Dr. decided to try a new medication with me, one that isn't treated for Lupus. After being on it for 4 weeks I was amazed at how I felt. We then tried to push the expensive ($2,000 a month) drug through my insurance and with a huge praise they paid it! God is so great!
I have been on it 6 weeks and it still seems to be working GREAT with little side effects. My Dr. thinks that by the time we go to Disneyworld at the end of the month I should be 110% better and wont need any assistance while I'm there (wheelchair) which makes me even MORE excited!!! WOO!

So that was the rest of my year. I hope to keep this blog up from now on.