Thursday, September 28, 2006

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.



Sunday, September 24, 2006

A Visit to My Home Town

I went to my parents house where I grew up for a few days. It's an hour from my house. Sometimes I come here to rest and get away from the stress of "it all". I also had to get fitted for my sisters wedding. We also celebrated a Jewish Holiday with my Grandparents. My mom and I went for a walk today on the canal by our house. Some of it was restful and some of it was stressful and some of it was painful. I am still in pain an just as confused as to what is happening as ever. I just want some answers. I have an old OBGYN here that now is just a GYN that is a alternative hormone specialist. He is one of the best in the Nation but I don't think he is seeing any patients anymore. I am going to call the office tomorrow to see if I can get an appointment within the next few months. If not maybe he has someone he can refer me to. He was a real nice guy but I have heard that he is getting burnd out. His office is about 15 minutes from my parents house. I am hoping he may have some answers and a ray of hope for us since I can't take anything synthetic.


Friday, September 08, 2006

Saying Goodbye is NEVER an easy thing to do!

My time with my Surgeon is done. He has completed his task with me and has done it wonderfully! I was in desperate need of something very specific and he was able to do this for me. He is easy to communicate with and while he doesn't have all of the answers and can't fix everything he did fix the one thing that needed to be fixed. Today was our last visit unless something happens to me. I am in great condintion upon physical exam and eveything has healed well. I will not be seeing him again unless there is some sort of emergency. My Indiana Pouch is doing well as is the stoma and everything inside has healed up well. The Phantom Urgency, like I originally thought, will hopefully be managed on a continuous basis by my Pain Management Team. The local Urologist will be taking care of my other urological needs at this time. I am looking to switch to the local Urologist's Partner as he seems to take much better care of me in an emergency. Saying Goodbye is NEVER an easy thing to do, especially to a Surgeon that has changed your life in ways you can never fully imagine, unless you try to live them! He gave me a gift that I will cherish for the rest of my years and it's priceless!I know how to contact him when it's necessary, for now I hope he that every patient that comes into his life gets the care from him that I did.



Thursday, September 07, 2006

Our Last Day on Cape Cod I made it into that Bathing Suit!

Our last day here on the Cape we went out for the day and I did finally make it into that Bathing Suit that I wanted so badly to get into 3 months out from my Surgery. I DID IT. I wish I felt better, but I did it anyway! We had a fun time. We took the boat out to two lunches and for some drinks and then we came back to the house. Onto Staten Island we go at around 7pm. We will be on the road for a long time and I am NOT one bit happy about that! But I did wear that Suit this year and just wanted to celebrate that!

Wednesday, September 06, 2006

Still on Vacation and wishing for some better Health Days!

I went to Hyannis, MA with my Mom and Dad today. We went shopping. We also went out to dinner. It was nice to get out. My Dad bought me a ring that I had lost a few months ago. It's called a Cape Cod Ring. I am so happy to have it! What a beautiful gift. It's sterling silver with a 14k gold ball in the middle of it. It sits right on the finger next to my wedding ring. I had an OK time. This trip was just not mean to be at this time. My Husband got a Promotion at work and is very happy. We are on our way to Staten Island tomorrow and then on to NYC. I just wish the phantom would go away and give me peace. I wish I could figure out what is happening and how to stop it. Damn fertility drugs have taken so much from me!

Tuesday, September 05, 2006

Phantom Urgency couldn't keep me from ONE thing!

Despite the horrible time I am having with my phantom pain, It could not keep me down from the one thing that I wanted to do the most while I was here. I've wanted to Jet Ski since I was 14 but have not had the chance to. Yesterday was my chance and even though I felt that aweful feeling that came from traveling, stress, and the dreaded Ovulation time, I still did it! I finally rode on the Jet Ski.

Sunday, September 03, 2006

Cloudy Cape, Kloudy Kara!

Yeterday before we left, Saturday September 2nd is the day I started to feel the phantoms again. As I look back on this journal they seem to happen a week before I am about to ovulate and then disappear. The reason I am writing this post is to try and log that this time around I am suffering again. If I can get some sort of accurate log, maybe we can figure out how to help this problem. Each month it seems to be one or two days out of the month and then the rest are fine. Even with all of the stress and passing ovulation. Needless to say I am stuck upstairs in my "cage" of IC. I am not out with the crowd. I am not out shopping. Our trip up was aweful. I could not stand the car ride. And maybe it's just way too soon to be doing so much activity with such a delicate surgery. The bladder feels fine. It's just where the urethra used to be that is having issues. Yesterday and Today. None of my meds again just like last month are working for me and there seems to be no explanation. No Urinary Tract Infection. My Primary Care Doctor left a messagge on my cell phone saying that the culture I dropped off on Friday was Negative and to have a great time on the Cape! Yeah! GO KARA! I decided to stay in today and baby myself since it's very cold, rainy, and windy here and hope that tomorrow is a better story. Signing off for now! (The house in the photo is the house we are staying in all week. I stayed on the 3rd floor with the guys that live here.)