Thursday, August 31, 2006

Getting Ready for Vacation!

I've been busy all week getting ready to go to the Cape and NYC. It's been stressful here as of late so I am looking foward to going. The only thing I am forgetting to bring is my Husband. My bladder feels good but anything could happen at any time and believe me, I am prepared for it. Bladder Removal can throw you for a loop sometimes. I hope I have a good a good time. I really need it!

Saturday, August 26, 2006

NYS Fair

The fair was fiar. It was packed with so many people. We saw a concert, ate A LOT, and did a lot of observing. I wanted to go and see all of the show bunnies because I have a ten year old bunny so I always like to go and take photos of the bunnies. We were there for 8 hours. I went to the bathroom once the entire time and that was not because I "had" to go. I thought it would be wise to empty it to avoid an infection. I emptied it at the 4 hours mark. I have a bathroom there that no one knows about so it's very quiet and private. There's a woman every year that keeps the rest room clean and she says to me every year. "When are you going to come around here and show me your pregnant tummy or your new baby. She says she's waiting. I say "I'm waiting too." She has 12 kids and 28 granchildren. She says she thinks that when the time is right, it will happen to me. I hope she's right. All of the things I usually take photos of were not there yet for this year. I love to take photos of the flower exhibit and we missed that. I like to take photos of the sand and butter scultpures but they were just starting the sand sculputres. I think we went too early this year.

The most positive thing I can say is that since getting this new bladder, I've been out and about more now than in the past 7 years. I hope the good health continues on. I'd like to keep going out!

Friday, August 25, 2006

The New York State Fair

My mom and I are planning on going to the NYS Fair today and tonight. Poeple who live here know how BIG of an event this is. I missed a few years due to my IC. My mother and I went last year and now a year later, after major recontstrcution/urethrectomy and Indiana Pouch surgery. I am attempting to go again. I had no idea that this year would bring what it did. We know where a secret bathroom is so I can have my privacy. It's raining today but I think we'll have fun anyway. I like to see everything that is there! This will be my first day out from start to end where I am on my feet. I've packed an emergency bag with extra medications, underware, stoma covers, band aids, saline, syringes, extra catheters, and everything else I could think of including an extra change in clothing in case of an accident. I hope we end up enjoying ourselves despite the rain. The fair is only 5 minutes from my house, which makes it very convenient.


Monday, August 21, 2006

2004 News Article, Drunk Driving Accident across from our Apartment


Marnie Eisenstadt Staff writer

A town of Onondaga man was charged with drunken driving Saturday after he drove his car off the road, over a sign, up a hill and through the living room of an Onondaga apartment occupied by people with physical and mental disabilities, authorities said.
"We couldn't get a speed because he never stepped on the brake," said Sgt. Tobias Shelley, of the Onondaga County Sheriff's Department. Two residents and their caretaker suffered minor injuries, as did the driver, Shelley said. Robert J. Gallagher, 52, was going west on McDonald Road in Onondaga when he drove off the road just before 11 a.m., Shelley said. Then he overcorrected and drove off the other side of the road, hitting a traffic sign, crossing a grassy area and driving through the fireplace of Apartment 486 at The Meadows at Westbrook, more than 300 feet from where he left the road. Shelley said Gallagher would not tell deputies where he was going, but was a little more than a mile from his home at 4331 November Lane.
The apartment Gallagher crashed into is rented by New York state for people with mental and physical disabilities. Two of the residents, Diane Leslie, 66, and Mora Green, 59, were treated at local hospitals, Shelley said. Patricia Adams, their caretaker, also had minor injuries.
Gallagher was treated at University Hospital for minor injuries, then turned over to deputies. In addition to the driving while intoxicated charge, he also was given a ticket accusing him of failing to keep right. Shelley said the Onondaga County District Attorney's Office will look into the case Monday.
Gray wooden siding and tufts of insulation littered the ground around the hole in the apartment wall. Only the rear of Gallagher's gold 2000 Chrysler 300 stuck out. Next to it a television sat, untouched, and a clock still kept time on the wall.
Kara Reese, who lives in the next building over, was sleeping when she heard the car slam through the wall.
After a stunned moment, "my second response was to throw my clothes on to see if someone needed help," she said.
She ran downstairs, across the green and into the apartment, where water was pouring out of the ceiling and broken glass was everywhere, she said. Reese first checked to see if any of the residents needed help.
Then she directed her attention to the car in the living room.
She jumped over the kitchen counter and looked into the car, but found no driver. Gallagher was outside the car, standing near the hole in the wall. Reese said he kept telling her he wanted to get back in the car because he needed to get his information from the glove compartment.

Illustration: PHOTODavid Lassman/Staff photographerONONDAGA COUNTY Sheriff's Department evidence technician Rob Krolltakes photographs of the scene Saturday morning. The rear of Robert J.Gallagher's car protrudes from the hole it made in the apartment inOnondaga. Color.David Lassman/Staff photographerTRACKS ON THE GRASS show the path of a car that struck this apartmentat The Meadows at Westbrook, off McDonald Road, in Onondaga. Deputiessaid Robert J. Gallagher, 52, of 4331 November Lane, Onondaga, was thedriver of the car. Scott Kelly, superintendent of the complex,examines the damage Saturday.MAP: 1. Car goes off road. 2. Car crashes into apartment. ThePost-Standard.

Sunday, August 20, 2006

One IC Woman to Another

I've just met a wonderful woman, mom and wife, who happens to also have IC. It was a great experience. She doesn't live that far from we do. She just graduated from college! What an accomplishment. I wanted to show a photo of us together from one IC Woman to Another! I look foward to spending time with her, her Husband and her Beatiful Daughter in the future. I don't get out a lot. This was worth going out, 100%. Happy Graduation Erika!


Thursday, August 17, 2006

3 Month Recovery Mark (Bladder Reconstruction and Urethrectomy)

I am at the 3 month mark for my bladder reconstuction/urethrectomy and creation of the Indiana Pouch. I have not posted to my journal for a few weeks due to some personal troubles that are not directly related to my bladder reconstruction. I thought I would post here to update anyone that is reading my journey. I have my first follow up in September for my Reconstuction (but I have to double check to make sure) If I still have the appointment, my mom and dad will be taking me to the Cape for a week and then onto NYC for a follow up with my Surgeon. Things have been going well. Knock on wood and be realisitic here. I am still recovering from the surgery. I am going to have to go into physical therapy if I want to live as close to a normal life as one in my situation can. My back muscles need some strengthening. They are weak. I am having trouble holding my whole weight up and it's causing some back distress. Other than that, at the moment, I am doing well. I've had a bit of a rash around my the outside of where my stoma covers go. We are still trying to find a treatment that makes it go away. Right now I am trying a heavy duty streriod cream. They have ruled out Yeast at the time being. I've been treating it for yeast for over a week and it's not responding. At the request of a very close friend of mine, I am going to look into seeing a Dermatologist in case the rash persists. The bladder is working well and holding up to over 1,000cc's every 4 hours, depending on how much I am drinking. The phantom urgency comes and goes with Ovulation but it's controllable with Lyrica and Keppra combined. I take the Keppra only when I need it, kind of like a PRN (as needed medication). I try to dwindle down to the Lyrica only, whenenver I can. I've been really tired due to stress and I've been really depressed, thus why I have not updated my journal. But I wanted to let anyone who is interested that I am so glad I did the Reconstuction and had the Indiana Pouch put in! I am so glad I am not abusing that Urethra every 20 minutes. It's been quite restful at times. I am happy and hope that this trend of good bladder health continues onward and upward! I am still kicking and going strong. I just need to get the rest of my life in order and I will be back up and running with things!

Happy with my surgery at this time! I think I am doing well for only being 3 months out. I just need to keep my chin up.


Monday, August 14, 2006

Clambake Photo

Clambake Photos of 2006. To view a larger view of thes photos just double click on it.

Friday, August 11, 2006

Depression over life is getting to me.....

We have our annual clam bake tomorrow. We see people there that we have not seen all year long. This year all of my good friends had babies and my Husband and I were trying way before they all did. And we still have not ever had a positive pregnancy test. I've never seen the stick turn blue. I went through several years of infertility and infertility treatments and they all failed and as it ended I got sicker with IC and had to have major surgery to get around it. Well another year comes around for us and I feel like I have accomplished not a darn thing in my life. No career, no house, no kids.....Tomorrow marks the first day I see all of my friends and their babies that don't live in our area. I am serious when I say they ALL had babies in the last year. I fell way behind. I've always wanted a little girl and still do. I am scared that I am going to say hello to all of them and then cry in front of them. I just want to say hello, say how beautiful they all are and then go into the bathroom and have a moment but I am afriad it won't just be one moment. I have put off seeing all of these people do to our infertilty and health issues. Plus nobody wants to hear my depressing health history. They and thier babies would all fall sound alseep. Anyway I am afraid there willl be lots of moments I may feel like crying. I just don't want anyone to see. I don't want them to think I am a selfish woman who only cares about herself. I want to celebrate thier babies and thier lives but it also hurts so bad. I wanted to come here just to let my feelings fall where they are right now. I've tried so hard to get myself well to get back into the swing of life but I just can't do it. I feel like such a failure and I may even cry about that. Everyone will be talking about thier kids, jobs, and houses, and what do I say? I am scared. I want to say and do the right things but my heart is in a different place. I've been falling deeper and deeper into depression over all of this. Clambake here we come! Ready or NOT!

Wednesday, August 09, 2006

Today is a BAD day where my aresnal of meds are not working for me. It so frustrating. The scary ovulation is coming around any day and that is my weakest point onto the following two weeks and my period hits. For the most part these meds work but there are days where they don't and that is what having IC is all about. Some days are good and some days are horrendous and there is a lot of suffering. Today is one of those days for me. Nasty Hormones. But then again those nasty Hormones could give me that baby I have always wanted, so I have to take one over the other. I just pray for a better tomorrow when I have days like this. If this continues where I have more bad days than not, then I may have to go the low progesterone birth control route which is my last choice. I am rambling on here. Just wanted to report a bad day here and thanks for the support you all give as usual!


Sunday, August 06, 2006

Phantom of the Urethra is there Inside my Mind!

The Phantom Urgency coming around again for this month. I was hoping to take the Keppra for only the bad times of the month with phantom urgency but it looks as though I am going to have to take it all of the time. This frustrates me because I did not want to be on any medication except for the Lyrica. I thought I could get away with taking the Keppra just two weeks out of the month. It seems to work better when it's not taken every single day at the same dosage. But if I want the phantoms to go away, then I have to comply and take it when I need it and I needed it last night. I will be ovulating in one week exactly to this day and that is when I need the Keppra the most. It's all trial and error anyway at this point because not that many people are familiar with Phantom Urgency/Pain in the urethral area. I guess I will have to take it day by day and month by month and go from there. I am trying to avoid doing the low dose of progestrone because it's really birth control and I've had really bad luck with that in the past, plus someday I want to get pregnant and the birth control is what had stopped me from ovulating completeley and what led to having to take fertilty drugs in the first place. Which led to me having to have my urethra removed so you can see why I am trying to avoid trying the low dose of progesterone each month. I guess I just want a future someday and feel that the Keppra and Lyrica are the lesser of the two evils. Unfortunately the Keppra makes me sooooooooooooo tired, I don't have the desire I had before to go out and do anything.One step at a time, one day at a time!

Positive for today: At least the Keppra and Lyrica work together to take away the phantom pain!I hope it stays that way!


Saturday, August 05, 2006

A Forever Friend

"A FOREVER FRIEND"© Suzin Polish Schwartz or LaurieAnn Kelly

Sometimes in life, you find a special friend; Someone who changes your life just by being part of it. Someone who makes you laugh until you can't stop; Someone who makes you believe that there really is good in the world. Someone who convinces you that there really is an unlocked door just waiting for you to open it. This is Forever Friendship. When you're down, and the world seems dark and empty, Your forever friend lifts you up in spirit and makes that dark and empty world suddenly seem bright and full. Your forever friend gets you through the hard times, the sad times, and the confused times. If you turn and walk away, your forever friend follows. If you lose your way, your forever friend guides you and cheers you on. Your forever friend holds your hand and tells you that everything is going to be okay. And if you find such a friend, you feel happy and complete, because you need not worry. You have a forever friend for life, and forever has no end.

Friday, August 04, 2006

I'm glad to be home and looking foward to walking my property.

This is the waterfall a few steps from my house. It's just a walk away and there is a Gazebo right by it so you can take a book and a relcyning lounge chair and read all day. I love being by the water and this is the closest I can get and still be home. I just need to get better to get to my waterfall. I am glad to be out of that crazy hospital and home. I am still not feeling 100% yet but I pray that I will soon and can go back to the point of taking walks and gonig out and taking pictures. I want to start living and I was just about to and then BOOM, I got a virus! I want to live up, not up and down. I want to have a house and kids. I want to live pain free! I just can't wait unti this recovery period is over. It's been 3 months 9 more to go and hopefully I will be on the up and up! I am trying to think positive here.