Back To School

Well, today was the boys first day back to school. I made it. It was a crazy busy day. I had to get them off to school, deal with the dryer people, clean house, cook supper and clean the kitchen, get Jared from football, take him straight to the doctor in Seymour, bring him home and feed him, get all his football equipment washed and ready for tomorrow, make sure everyone had showers, clothes laid out for tomorrow, and homework was done. May not sound like a lot for most people, but for the life of a lupie, it was exhausting!! Tomorrow will be ok, but from 3:30 to 9, it will be crazy again. I forgot how chaotic my evenings were during football season. You would have thought I would have remembered that one. Thursday I have to drive an hour and a half to see my Lupus doctor and drive to Seymour for an eye exam. Back to back. Friday evening is the first game. By the time Saturday gets here I will want to die! LoL I can't go at this pace for long, or I will be down. Literally. My Lupus is very apparent right now. I am broke out in a Lupus rash on my face. It looks Horrid!! I look like a freak of nature. Seems each rash is worse than the last. I have been breaking out on my thighs this time as well. Which is a new development. I dread the appointment Thursday. Lupus doc won't be happy. am just starting to come to the realization that I am never going to get any better. This is as good as it is going to get and I am never going to be what I consider normal ever again.

Summer's End

Well, Summer's end is drawing near and I am not even close to the shape I thought I thought I would be in. It was a bad summer for me where the Lupus is concerned. It was too cold at he beginning of the summer to get into the pool. Well, maybe not to cold outside, but too cold in the pool. Water wouldn't warm up. Then it was too hot to walk to the pool and the water was too hot from high temps and no rain. Needless to say, I got no water therapy this summer. I usually spend all summer in the pool working my butt off to get back what I lost over the winter. I hate to see what this winter like. am already starting off at the bottom instead of the top. (My physical scale. Scale I use to measure how well I am doing physically and health-wise.) I have to go back to he secialist next week and really do not want to. He is not ging to be happy. I know he is ging to want to start physical therapy and just can not afford it. I am at a point where just want to give up and let the powers that be have their way. every so often get in my head that maybe I need all these meds and all this crap to survive. I KNOW I do. I am not stupid. Call it wishful thinking, call it fatigue with the stuation in general,  call it stubbornness. I don't know. You get tred o living like this. Sometimes you think maybe it's mind over matter. That if you just think hard enough that you are fine, that you will be. Granted, none of this seems really logically when you look at it from  "normal" perspective, but these are the thoughts that run through someone's head who has a chronic illness. Anyway, a just really bummed that the summer ending and I am not in a better place physically. (FYI...Lupus and RA DOES affect you physically!!) Now that summer is almost over, I have to come up with a new plan of action. Wish me luck!!!

Reason for this Blog

Since the day I started this blog, I have had reservations about it. have tried to keep my disease out of the public eye as much as possible in an attempt to appear "normal". Reading a fellow Lupies blog has helped me realize its time stop being ashamed. It's time to stop being afraid of losing more friends. Most of which are already gone, btw! I NEED my place to vent, to share, to hopefully comfort or inspire another Lupie. Or maybe even just educate someone.  I have been so afraid of who will see this, what they will think. So I have posted rarely. I have been judged A LOT since 2001. Until my DX, was treated as a hypochondriac by friends and family. Like it was all in my head. Now I am treated like I have the plague! Like I am contagious, or pathetic. If I hear, "But you don't look sick" one more time think shall scream. When people find out I have Lupus they ask me what symptoms I have, how I found out I had it....once I start explaining it, their eyes glaze over and lose them half way through the explanation. This is why I keep quiet about it with strangers. Or people decide want to know. Which is a lot of people. On facebook I have to maintain a professional appearance due to my photography business. Twitter is where I can be myself and not that sick person. I can laugh and joke and just be me. so m going to start posting regularly on here from now on. I am not afraid any more. care who reads it. live in fear of being judged the rest of my life because the fact is, they will judge me anyway. with OR without this blog!!  So, I hope to help someone in some small way. Even if it is only myself. loL

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!!!

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!