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

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.

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!

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.

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.

70

70, that is the magic number. The crappy number, the number I hate. That's the number of pounds I have gained from lyrica in 9 months. Now I will be the first to admit I don't make some of the best eating choices, but 70 pounds is a little much. The Lyrica Manufactors claim that weight gain is a small percentage of people taking it. Well it's not and the weight gain is crazy. I don't fit into any of my clothes and honestly if I have to by a bigger size pair of jeans I will ball my eyes out. I have never been this big and I refuse to go up a size, so for now I am SQUEEZING my butt into these jeans.

My rhuemy is taking me off the lyrica 100%, I am so happy. SHe's gonna put me on something else for a little while. I am also on strict instructions to use my lunch breaks to get fresh air.

I am in the midst of a flare, mainly cause I am not sleeping that well and my flares are associated with my hormones as well.

Other than all this crazy stuff, life continues to go on. I was blessed to get an email from a reader of this site. I didn't really know others followed it. She has Lupus and has dealt with some of the same situations I have. It was really neat to read her email (I actually read it twice). I love knowing I'm not alone and others have the same expierences. Fight for people to liste!!!
I started a twitter page where I am doing updates daily on my lupus stuff. You can follow me there at www.twitter.com/corilewis. I am going to find out if I can put a twitter feed on this site so the updates comr through daily.

So it's been a while...

Are you surprised?
I haven't really wanted to update this blog, for a couple for reasons. First, I'm tired of the same old stuff and writing it all down just reminds me of that stuff. And two, does anyone really read this blog? I found out the other day that at least one person does because they emailed me asking me if I was doing better. Bottom line, I'm the same.

One of the things I did do differently was I went to my primary care physican after having a whole day of pain in my lymph nodes being so bad my right arm was useless. He sent me in for a mammogram in hopes of looking at the tissue, muscle & lymph nodes all at one. That was two weeks ago and I still haven't heard from him. So I wait. I'm going through another bit of no sleep. I finally got a rx for a sleeping pill, but it has yet to work. I see my doctor next friday and I hope to get some answers.

The pill I started finally kicked in and from an antidepressent stand point it is the best drug I've ever had. but as far as pain management I could take it or leave it. I don't want to go back on the other cause I need/want to loose weight.

I hope this is a good update. Once I figure out Twitter I'm going to start posting an update every day, if not more, so you can follow me there. Also I'm on facebook and that is probably the best place to find me :-).

Here is a little joke I put on facebook a little while back.


Ok, for the last several months I have been annoyed and struggling with everything I have dealt with and when a doctor says "Sorry you have Lupus, I can't help you" it is the most annoying thing you can hear. So lately I've realized, I can blame so many things on Lupus.
(Please note, some of these are true, but some are mostly for my own amusement. I don't plan on affending, but, you never know).


--have chest pain? it's not a heart attack... it's Lupus
-- 4 hours in the ER, finally the doctor comes in. barely looks your way and doesn't even touch you... he's response " You have Lupus and Fibromaylgia, I don't know why your here, there is nothing I can do for you".
-- I've known you for years and I've forgotten your name.... sorry it's Lupus
-- Stubbed my toe and yelled out a bad word- that's definatly Lupus
-- Eye doctor says the viens in my eyes are very abnormal... oh wait she just notice you have Lupus!
-- Can't eat much cause anything can set off some nasty GI stuff- that is DEFINATLY lupus
-- Gained 50 pounds in 2 months? It's not what your eating it's the meds
-- Your friends think you are crazy- that's the meds- from Lupus
-- can't get your words out of your head and your speaking in a large group? oh pardon me have an incurrable disease that causes me to be on crappy drugs that make me dumb... it's LUPUS
-- did I call you a bad name? I'm sorry I have Lupus
-- Did I forget I borrowed $10.00? eerrr no really that's lupus
-- laughing uncontrolably at something really dumb? Sorry I have lupus and I'm hoping laughter will heal it.
-- did I burst into tears after laughing? That's the steriods that make me crazy emotional.
--Did I just smack you for no reason? Sorry Lupus causes uncontroable muscle spasms.
--It's 5:00 and I'm in my PJ's resting in bed- yup you guessed it Lupus
-- You heard me snoring? at my desk? are you sure? well, then sorry I have lupus and it can cause me to fall asleep unknowingly... and the fact that I'm curled up on the floor only means I fell out of my chair... I didn't curl up there in hopes of not being caught.
-- Oh that's not a candy jar on my desk, it's my pill box, hands off. Those happy pills are for me. DUH.


I hope to come up with more... more funny ones. I hope someone found this funny, if it's not funny to you sorry, my humor is really bad cause of all the meds I'm on from Lupus.