Meet Me now...sort of

Good morning and Happy Easter everyone. I didn't make it to church with the rest of my family today, I tried, even woke up early, but I could barely move so I didn't go. :( Last night was the second night I took only half of my steroid dose and I don't think my body is ready to taper off them just yet, so back to full dose I go. I think I will call my PA and ask her how long she thinks it might be this time on the roids. I have the coolest PA here, she just treats my symptoms and lets me call most of the shots. Now I know that any of you out there with Lupus would be horrified to hear this, but my situation is a little bit different.



I was born in Texas, spent almost 10 yrs. out of the United States (Army Brat) and then moved to California, where I finished growing up. Oh, and did I mention I was adopted? (makes it real hard to pin down family history of illnesses) Funny thing, I guess I was but I never thought of myself as sickly growing up. I had horrible migraines starting at age 6 which didn't end, for the most part, until I was pregnant with my first at age 21. My mom took me to a series of horses azz doctors that said I was either making it up for attention or I was crazy and just imagining the kind of pain that had me vomiting and writhing on the floor. (remember, it was the seventies and I guess they just didn't know better) My mom, God bless her, as this was one of the very few times in my life she took my side, of course it was hard to miss the veins bulging out of my forehead and throbbing, so she took me to more doctors. They couldn't figure it out either, but she believed me and that's what really counted to me even at that young age. Finally at about age 11 or 12, one specialist concluded that it might be migraines but was unwilling to give me anything for the pain because of my tender age. My mom read up on a new type of therapy called Bio Feedback and taught me her own version of it. It was life changing in that it allowed me to get outside of the pain long enough until I either passed out, or it just passed. It is honestly true that this was one of the only things she ever did for me unselfishly in my life and that's why I will never forget the power she gave me over some of my worst pain. I'm really not whining or boohooing about my pitiful childhood, I'm just saying. Anyway, as you can imagine this sent me on a lifelong path of ignoring things wrong with me, lying to doctors if I thought they wouldn't believe me, or sharing any intimate details about myself, like anything going on with my body. Not the best things to do for a girl growing up with Lupus. As if it isn't hard enough to diagnose, I made it nearly impossible.



Ok, I'm back after a 5 1/2 hour break. Break, HAH! I was babysitting for my neighbor. I knew I should say no but I can't help myself, I adore that little guy, just love the stuffin out of him. (7 mth. old perfect little specimen) I'm really tired now, shaking inside from pushing myself so I think I will finish my intro at a later time. I'm really starting to like this, it's cathartic in a way and it almost feels sinful at the thought of strangers reading about my most personal thoughts and feelings. More later, I hope you all have a great evening and a blessed night.

Meet my husband (sort of)

I'm definitely not one of those techie type of people, and I never thought I would do something like this as I am an extremely private person, but the idea of actually writing down my feelings and emotions is somehow really appealing. I can't imagine why anyone would find my life at all interesting but I will say that if through my many years of experience with Lupus I might help someone, it would please me immensely. I will start with the basics so here goes: I am 42 yrs. old, married and have two wonderful daughters. (I guess everyone says that, huh?) I've been with my husband since I was 15 and he was 21. What a pervert, right? Anyway, we are still very much in love, no really! We actually like each others company and still talk about everything going on in our lives. He's not perfect nor am I, but he's less perfect and here's why: My husband is, was and always has been a pretty selfish person. His mother babied and enabled him all his life, and when I got together with him, I took right over where she left off. I know, I know!!! I knew what I was doing then and I know what I am doing now. I take some perverted pleasure out of being the one person who can do everything for everyone, make everyone happy and still be everyone's best friend. It's a long complicated story I might share later, yadda, yadda, yadda! Anyway, He has always liked things his way and I've always accommodated him for the most part, even after my diagnosis 12 yrs. ago, until about 5 yrs. ago. I became the sickest I've ever been and have not been able to rally from this one, meaning a flare. A flare is when you are having active symptoms due to the Lupus as opposed to being in a remission like state. I must say five years is a long time to be constantly sick when you have a personality like mine. My poor husband, what was he to do? I was still able to do for him to an extent, but nothing like what he'd been used to all his life. Well, I'll tell you what he did: he changed. Not totally or all at once, but slowly and with some hard bumps. But he changed! He started doing more for himself, and more than that, he started doing more for me. Can you believe it? Mister, I have to have everything my way and must not be inconvenienced, actually started waiting on me. After 27 years together habits can be pretty hard to break but he is, slowly and surely, and he couldn't have shown me he loved me more if he had shouted it from the rooftops. Now you see why I said at the beginning that I was still in love with him after all these years. It goes without saying why he is still in love with me after all these years. (you know, all the waiting on hand and foot) Damn! I said it anyway, Oh well. Like I said before, I don't know if anyone will be interested in any of this, but it sure felt good to write some of it down. I'm kinda proud of myself, an old non-techie like myself. This just might become a habit. ;) More later, must cook dinner. I hope you all have a great evening and a blessed night!

New to this: Not tech savy, but gotta start somewhere

I would like to start my new blog but as usual, I have to go. Welcome to Mi Vida Loca LOL