Thursday, May 10, 2012

Well.... Hello There. Seems Its been forever since I've been in here and I'm not even sure when the last time I posted was. But I thought it was time to get in here and update my life.

...ok.... I peeked. LMAO- It's almost been a year since I've updated this blog... That's terrible, huh!
....But thinking back now. I needed a break. It just got to be too much. Doctor appt after doctor appt.... I just had to take a few months and hide from the doctors. Can't hide from my body, but I can hide from them wanting to learn more about me....understand?

However... It's back to the real world again, and I am finding myself overwhelmed again. But I'm headed in the right direction so I feel good about that.

Breaking it down... Or else I'll get lost, lol...

We will start with the cysts on my only ovary. They're still here and causing problems. I have however Finally found an OBGYN that I like, and that I think I can get on the same page with. I met with her recently.... and she agreed to do the surgery, but... it's just not that easy. I have had a lot of female surgeries, so there's going to be a lot of scar tissue and adhesion's involved. And some of my other doctors and I believe that my bowels may be involved so she wants to have a gastronoligst with her. But then there's my heart and it's electrical issues.... If I lose  my ovary I will have to be put on hormones, and my cardio and me just don't think my body is going to do too well with that. So I'M LOST. She wants me to start the hormones- birth control now, but I'm scared to death to. My heart has been causing a lot of issues lately and that scares that crap out of me. I feel like I'm on high speed all day. My heart meds aren't really making a difference.... and I don't know if it's my heart or anxiety or both. I did make an appt to see the nurse at my heart docs office because he is out of town until the end of the month, but then missed the appt because I overslept. I can't sleep...and the night before I didn't fall asleep until 6am... and totally screwed up everyone's morning. It really sucks cause I just want to slow down.....

A while back I started seeing a neurologist for neuropathy....who also knows about dysautonomia. He ran his tests... and it was agreed by both of us to try a treatment of Topamax to see 'if we could get the nerve fibers in my legs to try and regrow" ....but OMG...did it make me stupid. Really stupid. I also lost all the weight I had worked so hard to gain back. I'm around 130 now...think I was 178 at my highest... and I'm at my lowest now. I'm almost off the meds now, the doctor wanted me to come off of them so I could get my mind back... and then when I was there he could feel a mass in my stomach(the cyst on my ovary) and it had my bowels shut down. I almost... I'm taking I was at the surgeons office begging... had to have a hemorrhoid the size of a lima bean removed, but THANK GOD they make wonderful meds that shunk it. Not to mention I spend a few nights sleeping in the tub. But I do that often to stay warn, so its no big deal. Yes, now that I'm thin again I can not hold my body temp worth a shit. Anyways.... the newer test results show that the meds might not have any impact on my legs, but they did seems to change my numbers for the better in other areas- For example... I don't sweat like I used to. So.... He wants to try the meds again one day, But there is No way my family will let me/us go through that again.

And then here recently I started seeing another specialist that is new to the area who specializes in Dysautonomia. His office is in the same building where I had all my heart surgeries...and I must admit...riding the elevator up to my first appt made me cry. It just wasn't a place I thought I'd have to come back too. But... I lke this new doctor. I'm not sure if he's too sure about me yet, but we will see. Tuesday I spent the morning at the hospital doing bloodwork. As the nurse put it... I brought her a book, lol. She cracked me up all morning. And I felt so bad for her. Some of the bloodwork that was ordered will be going to the Mayo clinic for them to test... and she had no clue what it was. It wasn't her fault... she just hadn't heard of it. Something about a blah blah paranormal.... and then we were both rolling. I told her the docs have checked everything else, Now they want to make sure I wasn't ET. In my head I know he's testing autonomic stuff...but I couldn't tell you what it said. I've got too much going on to remember everything. He will probably be doing a tilt table test at some point, which I am NOT looking forward too... But hey, if it helps narrow it down for them, then whatever....I'm just along for the ride right?

So...that's where I'm at....lost....confused...and still trying to live life.