Still Here :)

Well, the doctors didn't kill me :) They said they had to keep upping the anesthesia to keep me calm though. When I get there, they tell me they're going to use sedation (Versed, etc) instead of general anesthesia. I told them I have PTSD and I get very freaked out by catheters so it probably wouldn't go well that way, but hey, I've never tried it. Judging by what I was saying and the panic attack I was having when I started to come out of it, I think I know why they had to up it. Stupid PTSD *sigh* It's better than it used to be at least :)

My bladder is hanging in there but there is definitely interstitial cystitis going on. On the upside, the procedure doesn't seem to have kicked off anything so let's hope it stays that way. I'm sooooo glad that is over with. Now I get to focus on my summer goals!!! woooohooooooooo!!!!!!! I love summer.

Blah -- Chances are you should just not read this post. Seriously, a little TMI for most of you

Rejeanne stayed up until 2am again. Cyrus is starting to wake up. I couldn't sleep because I completely freaked out that some doctor I barely know will be inching my close to death (general anesthesia) so that some other doctor can poke around my bladder. I'm freaking TERRIFIED that allowing this doctor to poke at my bladder will result in unleashing the IC beast that lurks there quietly right now. At this point, I just feel like I have a bladder infection all the time. This is NOT a big deal for me. It's annoying, but it's no biggie compared to the other pain I get and the bladder pain I had as a kid. I seriously can't bear the thought of IC coming back in full force like it did when I was little. My life used to revolve around bathrooms. My only consolation is that at least I have wireless internet. I could actually work from the bathroom nowdays. I'm sure a few of my friends remember me getting stuck in the bathroom. I tell ya, when you literally live in the bathroom, you start inviting people in! hahaha I remember laying in the bath with the curtain closed and having people hang out in the bathroom with me. If ya can't get Mohammed to the mountain, you bring the mountain to Mohammed, right? I've eaten meals in the bathroom. I've slept in the bathroom. I've stayed in the bathroom for three days straight before. I remember the very first time I had my "bladder problem" (they didn't know what in the heck was wrong with me back then). I was little, probably 3 or 4 years old. I was wearing pink overalls and I had just used the restroom and I was crying because of the pain. My mom got so mad at me because I wouldn't stop screaming and I wouldn't put my overalls back on. I just remember the pain and her buttoning up my overalls telling me to knock it off because she was going to be late to work. I don't think anyone really knew how much pain I was in. People kept thinking it felt like a bladder infection, but I hadn't had bladder infections so I didn't know what they were talking about. When I finally had a bladder infection for the first time, I almost died from it because I didn't know anything was wrong. Compared to IC, bladder infections are "slightly uncomfortable" and really barely even worth calling the doctor about pain-wise. If you take that type of pain, and MULTIPLY it by about 100 or so, you might scratch the surface of average IC pain. Interstitial cystitis is no joke. It's debilitating, unrelenting misery and I really, really don't want it back. I don't mind feeling a little uncomfortable from it, just this mild aching stuff I have now, but I would do just about anything if it would guarantee I could live out the rest of my life without that kind of pain again.

So, everyone just keep your toes crossed for me that this "hydrodistention" of my bladder doesn't make the IC harpy come shrieking back to life. I've known for about 10 years that it will eventually make a comeback. Most people don't even get a 16 year break from it like I have, so I am thankful for that. The flip side of that is that now that I've enjoyed normal life, I know what I was missing before and I don't want to go back to that.

I also hate that this doctor will see the scars of the abuse I dealt with as a child. I always hate the look on their faces. That look of veiled horror and pity. The knowing look because scars tell stories of their own. I really really hate that part especially because they are required by law to ask me about it and the bastard is dead. Maybe I should just start off with that. "Please don't ask me about my damaged urethra. I know it is damaged. I know you will know why. He's dead. Move on." I guess I don't because I always hope they won't notice or maybe just won't say anything. But since this dude is sticking a camera through there while looking around, I'm pretty dang sure if there is any damage still lurking, he'll see it. I wonder if urethras can scar. The first doctor that noticed it referred to it as being "essentially scarred" but it's a little tube so I don't know if that is what it is exactly. I guess I've never cared enough to check. Broken, scarred, damaged, who cares? It's really all the same.

It's 6am now. I'm tired but too freaked to sleep. Since I feel like brutalizing my readers, I'm just going to post this anyways. Good thing my mom can't read this at work anymore. I'm not sure she can handle all the things I keep from her.

Caution: Mopey Post Ahead

Do you ever find yourself completely frustrated with yourself? That's what I'm about today. I'm so sick of being in pain most of the time. Well, all of the time. I keep telling myself that I've certainly had worse pain in my life, but it just NEVER stops. I think it's that I never have "good" days anymore and when one part of me starts feeling better, another part starts feeling worse. My entire back has been spasming all night just because I'm stupid and lifted Cyrus' car seat out of the car tonight (with Cyrus in it). I hate feeling helpless. I can't stand having to ask people to help me with my own kids. I wonder if people think I'm a hypochondriac. I try really hard to hide the pain I'm in as much as possible. Let's face it, no one wants to be around someone who complains incessantly about things they cannot change or are unwilling to change. I'm sure a lot of my mom-friends here are going to think I'm nuts for this next part but... I REALLY MISS BEING ABLE TO PROPERLY CLEAN MY HOUSE!!!!!!!!! Not lifting the kids is the worst thing, but not being able to clean is the second worst! I can do a little here and there, but nothing with the floors, can't clean the tub, and the stuff I can do I can only do about 10 minutes at a time.

I know on the grand scale of helplessness goes, I'm not in that bad of a situation. Unfortunately, it appears my interstitial cystitis is coming back. I've been mostly rid of that miserable disease since I was 17 and it has always been my greatest fear that it would return. It's not curable, but I've had the longest remission of symptoms that I've been able to find. Most remissions are just a few months, not 15 years. I'm thankful that have experienced "normal" life but in some ways knowing that life makes the thought of going back to all the pain even worse. So far, the symptoms are mild. They have new drugs I can try. I suppose there is a little hope here but just the idea of going back to the stuff I used to have to deal with has just really got me down. I have to go to Sioux Falls for them to do a test on my bladder to see how bad the situation is after my finals are over. I guess it will be good to know what is really going on. I'm still hoping that if I can get the PTSD taken care of that all the physical pain will go with it. It is hard to ignore the studies that show that intense muscle pain, TMJ, IC, etc (all these diseases that seem to involve locking up the muscles too tight all the time)all tend to travel together and are much more prevalent in people with post-traumatic stress.

The thing with life is that no matter how bad things seem or how good things are, life just keeps on going. Sometimes, I just have to take a day to feel sorry for myself and then pick up and keep going, no matter what. It's that strength and independence that gets me through the bad stuff, but it's also what makes me feel so disconnected from people and wussy when I want to ask for help. It's almost like I'm so busy trying to hide the pain that I pull back from everyone and just focus on pushing myself as hard as I can in the ways that I am able.

The main reason I'm sharing my mopey self today is...well...I'm grumpy! I'm irritable. Kinda like an old, stiff dog. I don't mean to be snippy and oversensitive but that's where I'm at right now. I just hope my friends can survive it and try to keep in perspective that I'm either in pain or hungry when I get unpleasant. I still love you guys, I just don't want to be a whiner. Except on my blog, right? hahaha

It's my blog and I'll cry if I want to!