Wednesday, March 2, 2011

Nervous Energy

My hysterectomy is tomorrow and I am busy at home... cleaning, organizing, throwing stuff away, you name it. I guess you'd consider this nervous energy.. since I suddenly have energy and I'm nervous about tomorrow.

I go from 'I'm making the right decision' to 'OMG, What am I doing?'.

Not to mention, I have a sick kid at home to take care of.. so I guess that is helping me keep my mind off of it... yeah right.

Wish me luck... Stupid Lupus.

Saturday, February 12, 2011

Looking back...

In my new M.O.M blog, I noted that I had another 'private' blog that I've had for years. I started that blog almost as a personal diary of sorts only online so there was no book to lose (I lose everything it seems). There is a little of everything in it. I started it a few weeks after I was diagnosed with Lupus. I didn't want to make that public, though I thought of it.. mainly b/c I didn't feel comfortable with EVERYTHING being public.. but there will be times that I will go back to it and put it in here.

Today is one of those times. I decided to put in my very first post....

I have no idea what I am doing here but I need to get things off my chest and I have no other way in which to do so. I heard about these 'blogs' and thought 'what the hell', I can do that. I do love to write.  Anyway- I got some news recently that I am having a hard time processing.
I was diagnosed with Systemic Lupus Erythematosus or SLE. WOW is that a mouthful!

What the FUCK is that?! I guess I have a lot of research to do. I am scared shitless but at the same time I am RELIEVED!

I was seriously starting to believe that I was certifiably insane. I have always had issues, always had pain for no apparent reason and usually felt like crap. I woke up one morning recently and I couldn't move. I am really not exaggerating at all. Every joint was stiff, my muscles were stiff, I had a high fever and I honestly felt like I was dying. I thought maybe I had the flu, but it was much much worse than the flu. Steve, my husband, practically had to carry me to the DR. Now, this is a NEW doctor. I had never even seen him before, we were in the process of switching b/c the Dr. I had wasn't doing anything for me and making me feel like it was all in my head. Honestly, I think that is what he thought and he was almost starting to convince me of it. So I thought I'd try someone new and see what happened. Little did I realize that we'd be calling them to switch our FIRST appt to an appt like this one. The Dr wasn't even there that day, it was the nurse practitioner and she was so dumbfounded by what was happening to me that she called the Dr at home... He came IN on his day off! Well.. he certainly earned brownie points for that one.

They sent me to the hospital.. where I received a bunch of tests, ones that I had never heard of before. About a week later, I was feeling better enough where I could get up and get around again. I was back at the doctor to get blood results back... He felt I either had Lupus, RA, or some other crazy diseases. So he sent me THAT DAY to a Rheumatologist in Oneida whom verified the SLE diagnoses. But she said that due to my symptoms she didn't feel she could adequately be the one to care for me. So she sent me to another specialist in Syracuse... We shall see what he says or does. In the meantime, I've started a shit load of drugs and steriods... STEROIDS.. are you freaking kidding me????

This sucks.

stupid lupus. 

Thursday, February 3, 2011



I am getting a hysterectomy.

Not because I want to, but I kind of... have to.

There are many variables involved.
One- I have Endometriosis and it's getting bad, really bad. The pain is almost unbearable at times and I sit around with heating pads barking orders, bitching and generally feeling angry about it. I also have multiple cysts on my right ovary which aren't helping...not fun.
Two- I have Interstitial Cystitis (a bladder disease) which sucks on it's own, but add the endo and it's only making it worse.
Three - the Lupus just aggravates everything. :enter evil/angry/annoyed squint:

I want another baby. As much as I say I don't... I do.
Deep down, I knew it wasn't the best thing for ME. So, at my recent OBGYN appt to get the results of a bunch of tests I had done...I asked some questions:
-'How will it affect me'.. knowing the answer.
-'How will it affect the baby'... NOT knowing the answer... but getting an answer that broke my heart in two.

 Everything he described that could happen, happened to my son, my second born... he was a very very sick little boy. I didn't know I had Lupus then. I had symptoms, sure.. but no diagnosis. We had no idea, doctors had no idea what was wrong with him or WHY he had so many issues going on.

But now I know, and suddenly the guilt was overwhelming. I know it's NOT my fault, but I couldn't help but feel guilty and I lost it. I cried. A lot. All afternoon. Even into the next Dr appt that afternoon. "I" (the Lupus) caused my son to nearly lose his life and caused a whole lot of stress on me and my entire family.

I can't put another baby through that.. heck, I can't put myself, my husband or my kids through that.

So, I am having a hysterectomy, they are removing my right ovary (it's full of cysts anyway). Leaving the left one in the hopes it will keep hormone levels at a 'normal' rate and hopefully keep the Lupus from going 'bazerk'.
The Endometriosis will be gone. That's good. I could have dealt with that though... the Lupus and the risk to a baby or myself... I can't deal with.

Stupid Lupus.

Medical Mystery

Yup. That's me.

A medical mystery

I don't have just Lupus to deal with... oh no. That would be too easy. Shall I name them all?
Lupus - and many of its secondary conditions.. which I can name at another time.
Interstitial Cystitis
IBS - this one is fun :enter sarcasm here:
Acid Reflux

I'm pretty sure I'm forgetting a few. lol


So, Hi.

My name is Marisa and I have Lupus.

No, it shouldn't define me. But it does whether I like it or not.

So I might as well just accept that and move on, right?

I have, for the most part.... I think...

stupid lupus.