Another year has come and gone....

Merry Christmas to those who read this.  It has been quite a while since my last blog. i had a fairly decent summer. Best 3 months i have had in almost 3 years.  The Lupus is still active. i have periods of "flares" that are worse than normal, but my disease still has not went into remission.  I keep wondering if this is as good as its ever gonna get.  I am tired of the shots, the IV's, all of it. I had to have knee surgery in October and i had to take a break from the shots. I still cant seem to force myself to take a shot every 5 days.  Between that and stress, that could be why i have been in a flare for the past 6 weeks or longer.  Do you ever just get to the point though that you think the side affects of the drugs are worse than the disease itself???  God knows I do!

With Christmas coming up, it makes me refelect and look back on the last year.  It seems i have been in a stall pattern for a while.  Like I am just trying to survive. And as I have done this, my children have gotten a year older. Gotten a year closer to graduating high school. I dont want to just survive anymore. I want to live. Or at least feel like i am living and enjoying life! But how do those of us who have an aggressive form of SLE do that?     I think maybe because my summer went ok, almost wonderfully, it gave me a taste of what i have been missing.  Why cant it be like that all the time?  The best Christmas present anyone could give me is normalcy.  I almost feel like the Lion and the tin man from the Wizard of Oz. LoL  I keep waiting for God to show me what it is I am supposed to learn from having this disease, what I am supposed to do to make something positive come out of it.

Well, thats enough self pity and reflection for a while. Thanks for listening and i hope you have a truly wonderful Christmas!!!

Bad Day again

I seem to have more bad days than good right now. I feel like vomitting every second of every day. My immunosupressant keeps ulcers in my mouth, throat, esophagus, stomach. I have been hurting in my bones, not the joints, the big bones in my legs. Days like today I wonder if I will beat this thing or if it will beat me. Am I gonna die? Sometimes I think it would be better than living this way. I know SLE affects everyone differently, but there has to be someone out there that is experiencing the same aeverity as myself. I am at a point where I think maybe I need new doctors. Could another doctor do more than this one? While I know this is my third doc in ten years, and I know no one did anything different than the last, I still have to say Isn't there anything else out there that would work better? I am to a point where all I feel like eating is crackers yet I am still swollen. I haven't lost the weight. The weight I put on from the solumedrol and prednisone. I thought the meds were making me SICKER, so I went 9 days without them and my neck swells up and freaks out all my doctors. So I have to have the medicine or I WILL DIE! But I can't help but wonder IS the meds just prolonging my death by a year or two? This can't be all that I am. There has to be more. And if there is not, then I don't want to live....
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Energy

Sorry its been so long since my last post. We have had LOTS of snow here and the kids have been home from school more than they have been at school since the end of January.
I am holding steady. No major incidents since my neck swelled up on me a few weeks ago, compliments of the Lupus. I go back on Tuesday for a Rhemicaid infusion. I think it might be helping some, but not a lot. I have a few good hours a day now, which is more than what I did have. I can shower, put on some makeup and cook supper. By the time I get the kitchen cleaned back up, I am beyond exhausted again though. I hate this disease, I have decided. I just want to be a normal person were normal abilities. My hubby and kids want to go away somewhere for a weekend just to get away. And I am afraid to. I know what going to the doc does to me and that is only an hour and a half drive. Where do I muster energy from to ride in a car for four hours one way and then go to an aquarium where I have to walk around all day? And no. I refuse to use a wheelchair. If I can't walk, I just won't go. Yeah, its stubborn pride. But on most days pride is all I have left! Would love to hear your thoughts, suggestions, recommendations.
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Desperation

Does anyone ever feel sheer desperation? I do. I have been fighting this disease, trying to get it into remission for two years now. I am tired. I am so tired of fighting, struggling, being sick, being weak. If the disease doesn't make you sick, the meds will. I want to be normal again so desperately, but I don't know where to start. I tell myself if it mind over matter, but as soon as I push myself to do what mind is saying needs done, I end up sick and in bed. Sometimes I think God is punishing me for things I have done wrong in my life. I am a devout Catholic girl, so compared to others, my wrong doings are slim. I want to scream and cry most of the time. But I cover it up by joking around with everyone. If I keep smiling, then no one knows I am dieing on the inside...............

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!