One tough Year!

It's 2:01 AM where I am and I can not sleep. Too many thoughts going through my head. I am laying here as depressed as can be. I have already spoken to my therapist by phone this week, but I only get her time for one hour every two weeks and with the load I am carrying on my shoulders, sometimes I feel like that just isn't enough. I was wishing this reconstruction would be the end of the bad times and hello to the good times but it has not come to that yet. To those of you who have been incredible supporters to me throughout this journey and as I move forward, I thank you. I am wishing I could be more positive for my own self just like I am for most of you when you ask me for help but I am just not feeling it right now, for myself.

It just goes to show you that I am human too and admit when things are not perfect. I could pretend that everything is wonderful and life is wonderful but that would be a lie and I don't lie to my friends. The truth is easier. Plus I am hoping someday I can look back on this and say "remember when....." with a brighter future at my feet.

We had a family affair this past weekend and I saw some family members that I have not seen in years. They did not ask one word about my reconstruction which is so near and dear to me. They didn't even ask how I was feeling. I know people don't know what to say but I don't feel this is a good excuse, which is why I come here a lot for love and support. You all know way more about me than my own flesh and blood and most of you CARE! That to me is family! I don't talk about my bladder removal with my "best" friends, Sister and I don't talk about it with extended family. So that leaves my Husband, Mom, Gram, and my IC Family here. Doctors have come and gone like swinging doors in a large mansion! I have a terrible fear of abandonment.

As far as the surgery went, I was a 100% success. My Surgeon could not have asked for a better outcome under my circumstances going into it. But my recovery has been riddled with some issues of which we don't know the answers to. If it is in fact phantom pain, it does relate to bladder removal. I hope that one day I can tell you it's gone and if it happens to you too that it too shall pass.

I was just turned down by a nerve specialist because I mentioned the word Interstitial Cystitis in my email. How awful.

There used to be a safe place to go that was my favorite in the whole world. I didn't feel I had far to go to get there, it required no advance reservations and had no travel restrictions. In this place I felt totally free to just be myself. I could laugh and be silly, or sigh or cry without fear that anyone would object or think it strange at all. In this place I knew that I was accepted and appreciated just as I was, and yet in this place, I felt that I could grow and spread my wings. This place I speak of was here.

As of late, I am afraid that because I am not going back to work, having kids, and signing up for classes, that I have failed this surgery is some way and that I am of no use to anyone traveling down this road. If anything I have more time on my hands to offer support and knowledge. Some bladder removal patients take a little more time and tinkering to get better than others. I am one of them.

I am taking this day by day, one step at a time as slowly as I need to go. I wouldn't want to push myself for the sake of pushing myself.

Just feeling down tonight and can't sleep thinking of all of the things I am not yet able to do with my life.

Thanks for listening.

Sincerely,

Kara