A Bitter-Sweet Story

So its 230 in the morning...I have been back on cellcept two days...and I am assuming that the nightmares are from that. I did "the bad thing" and googled and it is a common side effect...but tonight when I woke up I saw something...In terror I ran over and turned on the light...but there was nothing. I was so sure I seen something in the darkness...I then put on my robe and made my w

     So I get a call from my Dr.'s office today. His nurse informs me that my dsDNA, RPNss, and some other thing I can't remember has actually increased...The Lupus is worse. They way it was explained to me is that basically all the medication is helping but my body is producing so much of the protien that its not being killed off. Awesome!!!

I filled paperwork

     So,  I've been Benlysta for the past few months. I was pretty excited getting off of most of my medications, because as you know the side effects are sometimes worsethen whats being treated. The cellcept has made me have so many gastro problems...its horrible. I was worried about losing the pred weight but I don't keep much down so thats really not an issue

So this morning I'm feeling a little better. My temp is back to normal. I think it broke some time last night because I woke up covered in sweat!!!Gross...lol. The body aches are nearly gone...trying to stretch it out to speed up the process. Store throat is still there but not as bad...nausea and headache remain but those are minor after dealing with everything else.

 I did see

I had my 3rd treatment the 13ths...and let me say that this one was horrible. I've been running a temp between 99-102. I ended up going to the ER yesterday...and I've been feeling really badsense. I've had an on going headache, bodyaches, joint pain, and I haven't been able to keep anything down...not even water.

The good thing is nothing came back in my labs frm the ER. T

For so many of us this really is a journey. I've learned so much about myself...and I am slowly starting to see that I am so much stronger than I could have ever imagined. Being forced to deal with issues that I've avoided for so long is hard...but facing them head on has really helped me along.

I'm getting back to school and work...and the juggle does really making me tired..

Yesterday was my first day back to work. The lights made me throw up and my knees swole up pretty bad. I cam home and slept like 12 hrs. I've had to take it easy all day...Keeping ice on my jointsand trying to at least eat crackers. I'm going to try to ride out this week...but I have Benlysta next week again and I'm pretty sure I'm schedule to work. I can't really afford to qui

So I got the second dose Benlysta today. No headache this time...but I did come home and sleep for like 4 hrs.lol. I could def tell I was due for the next dose. I a lot of muscle pain the two days leading up to it. So I'm hoping I will have enough in my system to make it to the once a month doses.

I go back to work this week. I a a little scared because of all the sun exposure and ph

So I got the call from work to come back. My Dr approved me to go back but with all types of limitations...and he said I can only keep working if it doesn't impact anything. Honestly if I have a choice between work and school...I def want to finish school right now. I'm only cleared to wk 6hrs a day...and 3 days a week. My Dr said I probably wont be able to work full time just because o

So I went in for my first labs sense Benlysts...and I'm trying not to get to excited...but its the first time I didn't turn black and blue for bldwk. I'm hoping that, that is a good sign. I still have a lot of sensativity to sun. That hasn't changed. I've been able to workout everyday and besides the really bad AR I'm feeling pretty good. I got a doc apt on Friday and th

I want to take a min to talk about Prednisone...devil drog.lol. Yes I understand that in my case it probably saved my life...But I have been on 60mg sense Christmas and am just now being able to taper. On it I've gained 20-25 lbs. I have developed anxiety (never had that problem ever in my life), high bp, and an addiction cheese and icecream...not together of course,lol.

I did keep a

So the first week is over...I made it,lol. It wasn't as bad as I thought it would be. The first two days I did have the pain in my limbs and a little bit of a headache. The heartburn has been constent...haven't really been able to eat anything heavy...really doing a lot of the "heart healthy soups". Its a little more salt then I was doing before but 1 can is only like 400mg. T

So I was dating this guy when I got sick...It had only been like 6 months but I'd be lying if I didn't say I was in deep. I really liked him. The hospital visits and everything else was to much for him...So we broke up. I kinda understood...SLE is to much for me at times,lol...

So with the modivation of my wonderful friends I've worked my way back into the whole dating game. I

Today is ok so far. No more muscle pain. I did notice some swelling in my hands and feet but I did run last night. Still have the acid/gastro issues. Every meal I'm havin to do an antacid (alongwith my daily preacid). The vommitting and headache is mild. My energy level seems pretty good. Only thing I'm a little worried about is my labs being off because I haven't been to eat much b

So today has been a complete turn around. Yesterday was horrible. I was kind of upset when my Dr. said to "ride it out". I almost feel bad for doubting him,lol...he's been so right abouteverything else...guess thats why he gets the big bucks,lol.

     Today I do still feel a little muscle pain but its more of a stiffness. I think that I could probably do

Sooooo....today was a hard one. I have really bad muscle pain in my limbs...Its gotten a little better after a hot bath and some stretching but this moring I couldn't even get out of bed. Still been pretty sick as well. I'm sticking to shortbread and water. My heartburn is is crazy...I think thats why I have the sore throat. I didn't really see these side effects on the Benlyst

So I had my first Benlysta treatment yesterday. It went fine...I was pretty tired afterwards. I went home and slept. The first night was kinda hard. I had a low grade fever...night sweats...and vommitting. Right now I feel a little tired and weak but I can already see reduced swelling in my hands and my skin looks less irritated. I'm just taking it one day at a time. Hoping for the best...