Friday, February 5, 2010

lupus 101

This is a picture my daughter Angela took of herself yesterday with her cell phone. Then off it went to me because she knows that it will brighten my day no matter what else is going on. Yesterday I went to the hospital from the flare I had been suffering from for the last few days. I was a mess by the time my hubs wheeled me in. It has been 6 months since my last really bad episode, the lighter ones I can handle on my own.

Lupus behaves differently in everyone. After living 15 years with it, I still haven't figured out what triggers flares. Attacks are very random and can occure at any time of the day or night. I am often asked what happens to me during a flare, so I thought I would share the progression that takes place with you:

I start to feel really tired and worn out
a slight burning sensation begins in all of my joints
my skin becomes sensitive to the touch
my muscles begin to twitch and cramp with pain
electrical shocks race through my body
headache and nausea begin
my chest feels heavy and breathing becomes labored
pain increases around my bones

Then symptoms take it up a notch or two and I have been known to briefly pass out. All of this started up around Tuesday afternoon and by Thursday morning I cried, "Uncle" and the hubs took me in for a shot. We use the hospital pain level number system (severity of pain being at 1, 2, 3, -->10) to communicate where I am at in the flare. The shot slows most of this down and then I quietly rest through the remainder until all symptoms are under control. Like I stated earlier, the less intense flares I can handle on my own.

You may know someone with lupus and I am here if they need information, or just an ear to listen. Feel free to share any information that helps to combat pain, or any helpful keys to living with a chronic disease.


Jack K. said...

Sorry to learn of your pain. It must be an awful experience. I don't know how you maintain your positive attitude.

That photo of Angela is bound to have something to do with your attitude. What a sweetheart.

Take care and I hope you can finally pin point the contributing factors to the flares.

Anonymous said...
This comment has been removed by a blog administrator. said...

So sorry you are hurting.

Sending love and seeing you in your glorious perfection.

Wanda said...

Oh my dear Darlene ~~ So very saddened each time you have to deal with these flares.

15 years must feel like a lifetime.

Angela looks like an Angel, and I know she watches over you.

I plan a trip to Hughson in March, and I will want to come visit you, and love on you.

Our love and prayers
Wanda Mom, and Pastor Dad

boho girl said...

you are my hero.
your strength astounds me, always.

i love you, the moon and back.

i want to kick lupus in the ass. really hard.


Gina said...

appreciate your blog...I have lupus also and can relate to your journey...praying for wisdom for your docs and patience...