Thursday, April 30, 2009


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 I am going to find out if I can put a twitter feed on this site so the updates comr through daily.

Friday, April 24, 2009

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.

Wednesday, March 11, 2009


It looks as if my updates are monthly, but I guess that’s better than none. There isn’t a lot to update you on, just the same old stuff. I am hoping the new medication kicks in soon. I am in intense pain. The breaking point was when I couldn’t quilt on my machine last week. My doctor has upped my pain medication, so that is taking the edge off, but popping pills is not always the first thing I think of. The exhaustion is overwhelming. There is so much to do in life and my wonderful husband has had to pick up a LOT of the slack, which makes me feel guilty (he doesn’t make me feel guilty, it’s just me). Josiah has been great, we are coming up with things to do together that I can do while resting like reading or puzzles. I have been teaching him how to play Sudoku and he loves it. It’s fun to do things like that together. I will update when/if the meds start working. I need to get back to life.

Tuesday, February 24, 2009

Life is so interesting. The sleep didn’t get better right away, as a matter of fact it got to the point of where I went two full nights with no sleep. By Sunday afternoon I was so out of it and I started to become sick with a cold and had all the signs of having the start of a Lupus flare…
So I have slept pretty good, in the last week, mainly cause of Nyquil.
This flare seems to be a big one, it seems to have a lot of symptoms, some aren’t too bad, but others are painful. My lymph nodes have swelled back up and they are so painful. So back to square one.

Other than all this fun, life is pretty normal. I work at trying to take it easy but that doesn’t always work. David has now caught the cold I got, so I am waiting for it to come back my way .

Monday, February 2, 2009

Life has been incredibly overwhelming lately. Not in a particularly bad way or a good way, it just seems crazy. I went to my doctor last week to ask about the new Fibromyalgia drug. The one I’m on now has helped me gain a lot of weight in a short period of time and I really need to lose it since it is affecting my ankles. So the new drug isn’t out yet, but there is another drug I could try. So I am weaning off the first one & starting the second one. The first one seems to working its way out of my system fairly quickly and the second one is taking it’s time working into my system. I will be glad when this is over, and I really hope it works! But in the meantime I am being reminded of how I felt a year ago. I really don’t know how I survived all this pain and lack of sleep.
So that kind of catches you up to my health stuff. I am sleeping 2-3 hours a night- if I’m lucky. David & I bought a new mattress that we set up tonight- so I’m hoping that helps a little. It’s much better than the one we had.

Monday, January 5, 2009

Just had to share my laugh

So now I am going through life learning to accept the fact that yes I have Lupus. I now find it funny that any doctor I see (that is not my Rhuemy) assumes that whatever aliment I have is "Lupus". It was frustrating at first, but it's ok now. I am just going to start asking "if I didn't have Lupus what would you say?" I may not make any friends, but oh well, these doctors need to know that they need to be sure they can't figure it out before they blame Lupus.

What made me come to the realization? I went to the eye doctor and she did the whole exam and towards the end she said the vains in my eyes are very narrow and curvy, which is caused by Lupus.

So I have Lupus, I am going to live with Lupus and fight Lupus. I may get frustrated, I may not feel good, but it's ok. Life will continue whether my body wants it too or not.