Insomnia

Well, another sleepless night came and went. It is 7 AM and I have not slept a wink. Getting very frustrated with whole no-sleep thing! Does anyone else with SLE have this problem?
The swelling in my neck is almost gone. Last Tuesday night my neck started swelling around 10 PM and by 3 AM Wednesday morning I could not hardly swallow liquids. I spent the day in the ER only to find out it was the lupus causing it. I have had legs and arms swell up twice the size they should be, but I never thought my neck could or would also. Needless to say, I was a bit scared. The swelling started in the left side of my neck, wrapped around the front of my neck and then spread down into my my left shoulder along my collar bone. It was a trip and a half, let me tell you. One I hope I never have to go on again.
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Bad day

Well, today was another bad day. I have a love/hate relationhip with my Immunosupressant drug. I know its working, I have the bloodwork to prove it, but it makes me so sick! I feel horrible for a day or two after I take it. Considering I take it every 4 to 5 days, that doesn't leave very many good days each week. I average 2 to 3. I still can't figure out why I have such a hard time going to sleep when I am so exhausted. It doesn't make sense. My health must be diminishing physically because my 14 year old has reverted back to a toddler. He wants hugs and kisses all the time. Not that I am complaining. It just worries me. I don't want him to be scared, or worry too much about me. He told me this morning before school that he didn't want to leave me at home alone all day. I must have looked horrible! LoL being a parent is hard enough without having a chronic illness on top of it! Brings in a whole other bag of problems. I try to stay upbeat, joke around, constantly cook for them, but there are times when I can not force myself to get up to go to the bathroom. I want to cry most of the time. I have been fighting hard for over almost two years now and I am still not in remission yet. It scares me. I just want to be normal again......
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My story

I guess I should tell everyone my story. A little over ten years ago I became ill. At first, the doctors thought I had MS. The Lupus tests were all negstive the first time they were ran. I started taking MS drugs, shots on a daily basis. The more I took, the sicker I got. I developed optic neuritis in my left eye which convinced them the dx was accurate. I had trouble with my legs and my reflexes became non-existent. It didn't matter how many times they hit my knee with the little hammer, it wouldn't flinch. I developed polymiositis and my left swelled up twice the size it should have been. Was hot and red. It was at that point they retested me for Lupus. The test came back positive. Once I started on the right treatments we got the disease into remission and I was able to go back to work. My disease stayed in remission for five years. Two years ago, I became ill again. Joint pain increased, Chrohns disease flared and I developed SICCA syndrome. Rashes started occurring all the time, I got sores in my nose and mouth and I developed pleurisy and started having heart trouble.my white cells, monocytes and lymphocytes were elevated. Red cells were too low, and I had kidney and liver involvement. My C-Reactive protein has stayed 4 times higher than it should be. My bloodwork tests results had flags all iver it. They started me on meds and finally last month everything returned to normal except my CRP after almost two years of being screwed up. I still feel horrible. I am exhausted all the time. Joint pain and muscle pain is horrible. Meds make me sick. And I am physically weak. I tire so easily. Mouth sores have never went away and now my left ear rings constantly. I know the bloodwork looks better, but I sure don't. Getting tired of fighting, tired of being brave. Tired of forceing myself to put one foot in front of the other. If there are others out there with similar symptoms, would love to hear from you!
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Lupus rash. A more mild one!

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Insomnia

Is there anyone else out there with Systemic Lupus who is tired ALL the time but just can NOT seem to sleep? It is 4:30 AM and I will have been up for 24 hours in just 3 more hours and sleep is just not coming. This happens at least twice a week! Any suggestions????

Boys will be Boys!

Well, my two sons had their first knock down, drag out, fist fight. LOL Camron punched Jared in the head, and Jared turned around and punched Camron so hard it knocked him down. I can't help but laugh. I was raised in a house full of girls. So this is all a new experience for me.  I still don't know what prompted the fight. With those two, they don't need a reason. Ha-Ha! The funny part is, when I tried to ground them over it, they BOTH defended the other and said, "don't punish him!" I don't get those two! Any insights? Feel free to comment! Til next time............

This is a poem I wrote and forgot about. I just found it.

Break Free

From dawn to dusk
Every single day
Certain things
Will always be this way.
I always question it.
Is life fair?
One thing is for sure.
I wish I didn't care.
I promise myself
Things will turn out ok.
I grin and I bare it
And force myself to stay.
I wanna break free
Feel the wind in my hair
And learn how to fly.
I wanna stand tall
Take a swim in the sea
And spread my wings to the sky.
I wanna break free.

Hello

Hi! Welcome to my blog. My name is Peg. I am a 35 year old mother of two wonderful boys. I have SLE, Chron's, and RA. This blog is new for me, so please be patient. Just trying to figure everything out for the moment. Thanks for reading and hope you enjoy future blogs!