I haven't written about myself or what's going on with me since my miscarriage. Do you realize it's been 18 months since I miscarried? Doesn't seem that long ago. Oh how time flies!
But I'm not gonna talk about the miscarriage. I've actually been recently diagnosed with something called Cushings disease. What? You've never heard of it??? This wild and crazy disease?? Well join the club. I had no idea either. Don't know when it started or what it's doing to me. I have no major signs or symptoms. But I'll give you my idea of what it is from what I've read. (And yes I know I shouldn't read up on these things online or I'll scare myself, but this time I'm glad I did! I think I'm better prepared because of it!)
In any case, it's a tumor on the pituitary gland. It can also affect the adrenal glands. My doc doesn't think it's affecting my adrenals at this time. It's just my pituitary that's secreting an excess hormone called ACTH and cortisol. Now our bodies need these things, they just need to be in balance. Mine are somewhat high. I guess if it goes on for long periods of time, it can cause symptoms like moon face (a really rounded face), buffalo hump (bump on the top back of your neck), fat padding around the tummy while the limbs stay somewhat slim, pink to purple stretch marks, easy bruising, fatigue, menstrual irregularity etc etc etc. I'm tired a lot more then I should be and I'm bruising a lot more then I used to. I chalked it up to aging tho. Little did I know. I have no other symptoms tho. Doc thinks I'm in the early stages.
What does this mean for me? I don't really know. It's not life threatening when caught early. Check, got that done. I'm seeing an endocrinologist and doing testing out the wazoo. It can cause these other symptoms to eventually happen if I don't get it removed. Yikes. I got an MRI and am waiting to hear how big this sucker is. Doc doesn't think it'll even show. It's that small. Is that good or bad? I dunno again. Good I'd think. Maybe they can just radiate it off? Who knows. If I do have to have surgery for this thing to remove it, it can't be done in NJ. I have to go 8 hrs away to a SPECIAL specialist! NO KIDDING!!! There are very few endocrinologists in this country that deal with this sort of thing. Now take that and add in that we need someone called a NEUROendocrinologist to operate on this thing that they have really no idea about. Because it's in the BRAIN! Right next to my BRAIN!! AHHHH!!! Talk about freaking out.
I'm feeling fine for the most part and going through any kind of surgery just totally freaks me out. Making me feel like it'll actually make me feel WORSE. Cuz if I feel fine now, how could it make me feel better? Better then better?? I mean I have 5 yr old twins, I'm still gonna be tired! And if I have the surgery, I'll have to take hormone replacement therapy. How is THAT gonna make me feel? How am I gonna be a good mom to my kids if I'm doped up on steroids???? I'm trying not to freak out and I like to stay in denial. It's the safe place to be.
My next appt isn't until the 17th of May. So I just have to wait. Hopefully I'll get answers from all my tests I've had done up til that point. Then I'll know where the next step will take me. In any case, it won't take me away from my babies...
No comments:
Post a Comment