Celebrating?

I am hoping that this finds everyone pain free and getting ready to spend time with friends and family. I know that this is a time of year that we all look forward to. I just hope that we all can take a moment and take care of ourselves, and remember why we all celebrate.
I am not spending time with family again this year, (really can't say that I get to spend time with my husband everyday). I know that there are lots more people out there that just have a spouse or even more that have no one. Therefore I am thankful for all my love ones that can not be close over the holidays. As most of you know traveling for me is so hard, the pain is still way up there and I go to the bathroom at least every 20 minutes. So I have mailed out presents and cards to everyone. I am hoping that my body will allow me to go to church for Christmas Eve service. That would be my third time at this church, I really like the people there. Everyone seems so nice and not a single person has asked me why I get up 4 and 5 times durning service to go to the bathroom. I am so worried how I am going to answer that question when it comes up. I really don't feel comfortable telling people that I have IC yet, not sure if I ever will.
I got so bad news over the weekend, SSD sent me my letter. I was told that I am disabled, just not enough. They realize that I can't do a normal job, but think I could try alternative work. I don't know what alternative work is, not sure that there is a job that I can get up and go to the bathroom at least every 20 minutes, as often as every 8 minutes. Or maybe they know of a job that you can do in the bathroom while on the toilet. I guess this just means that I will have to reapply. I have a call into my lawyer, just hoping that he has some good ideas. This might mean that I will no longer have health insurance though. I have gone through all my savings, and now I will have to see about getting state aid. I have never had to ask for state help and I don't know how to go about doing that. Just one step at a time and I might need to just do baby steps.
Today a friend of my told me that she is going to quite her job and go to trucking school. I am a little jealous. I drove truck with my husband for 7.5 years and that was a time of my life that seemed a little easier. I sure hope that she has the time of her life. It will be a change of pace for her, but she will get to see as much of the US that she wants to. Best of luck and I will pray for you everyday.♥
I hope that everyone has the best time this Christmas, just remember that all of this is possible because God sent his only son to us. Merry Christmas

Holiday Baking

For Christmas this year I have decided to make holiday goodies and send them to my close friends and family. I can't afford to buy and send everyone something special so I thought this was I am putting the time instead of money in. I am having trouble with the pain and going to the bathroom but I just take extra breaks. What would of only taken a couple days before is taking more like a week maybe a little more. My husband is quality control since there are so many of the goodies that I can't have, I am sure it is a job anyone would apply for.

I was invited to a Christmas program last weekend, I had agreed to go and Saturday (the day of) I started into a flare up. But this lady had went out of her way to invite me so I took a pain pill and turned up my interstim and had her pick me up. I was glad that I went it was so interesting, they had recreated Bethelaham and they had you go through and pay taxes. The journey took you through a the Roman soilders it was great. Granted the pain wasn't good, but I had Sunday to lay around. While I was there she invited me to a ladies tea on Dec. 9th. I figured if I can get through that I would try going to the ladies tea. I would love to start going back to church. I know that going every week is probably not in the cards but I need to find a place that is a fit for me first. I am looking forward to turning up the interstim, drinking some hot water and meeting several new ladies.

I have not yet had any relief from the pain on my right side. I can touch my right bottom a little more without feeling like I want to hurt my own hand for touching it. But the pain is still there. I want to sleep on my right side again, I can sleep on my left side and some on my back but that is it. I go to the doctor on the 23rd I hope that it will be gone by then but if it isn't I am going to tell him then.

I hope that everyone is getting their holiday shopping and baking done. I am not doing the shopping thing, just the baking and not sure I could do both. Wishing everyone a painfree week. ♥

Happy Thanksgiving to everyone

I sure hope that everyone had a wonderful stress free Thanksgiving holiday. I know that my husband and I enjoyed eachothers company. We played some board games and watched some movies at home.
It snowed here a little over a week ago and since then the weather has been very cold and snowing on and off. I understand from the forecasters (they are only right part of the time) this is suppost to be a bad winter. All I can say is I have only been here for 4 winters and this one has been the worst one being so far. Tonight we are forecasted to get 4-6 inches and ice in the morning hours. The rest of the week is much of the same.
Today was my day to make my pearsauce. I can no longer eat applesauce and love it. So I buy large bags of pears and make my own. I am sure that it is better for me because I don't have all the extra crap in it. But with all the damn breaks I have to take it is a 4 hour long process. But so well worth it, this time I didn't buy as many pears because of the cost so it is not going to last long at all. I have had to buy so many things that are not processed that it is night and day to the way I use to shop just a short year ago.
My pain hasn't let up but I have to push through the day. I don't go to work and not sure how I could make it through the day if I did. I haven't heard from SSD I applied 6 months ago. I understand they have upto a year before they have to answer the first request. I hope that they approve me. I need insurance and money, I guess if they don't it will be on state aid. Not looking forward to that, but going to have to think about it. My secondary insurance runs out in another month. I would advice any and everyone always get aflac or something like it. You never know what is instore for you when you wake up in the morning. I have always had the problems with my bladder but never knew what was wrong or that it would take over my whole life. But if I wouldn't of taken out the insurance my husband and I wouldn't of been able to stay off of state aid this long.
I am so tired and hurting so much lately and don't want to bother anyone with my problems, I just wonder does anyone really get what I am going through? Or the bigger question does anyone really care?
I will end this for now, but I pray for all of you. I don't want anyone to feel like me.

Clouds

Today is so sad outside, it isn't to cold out but you would think it is just by looking out the window. Well I have forced myself to get up shower and try to look like a normal wife. I do this everyday in hopes that my husband will think that he is still married to somewhat of a normal lady. I would hate for him to really know that I have to drag myself through the day, most of the time crying inside. I don't want anyone I love to know that I hurt as bad as I do. It is hard work to put on a good front, not sure how long I can keep this up but I can try.
On the good side of this I did get some of the laundry done, if you don't do some of it every few days I don't think I could get it done. We had a very bland supper, well my part of it I always put extra seasonings on my husbands. He isn't the one that is have problems just me.
I am trying to figure out what would be good things for Thanksgiving, we will be here together and that is fine. But since I can't really travel I feel a need to give him a wonderful meal. If anyone has any wonderful ideas please let me know. The normal Greenbean Casserole is out because of the crap that is in it. I know he loves it so I need to figure out something. Turkey is fine because it is pretty bland. I just want him to have a wonderful day, this isn't his fault. I know that it isn't mine but I am forced to live this life. I don't ever want to loose him because of this awful disease.
I love all of you, and pray that everyone is having a month to be thankful for.♥

Interstim One week Post Op.

First let me start by saying I hope that this doesn't become a bunch of symbols as soon as I post it. I have talked to some people and they told me how to fix the problem I hope that it works.

I have had the interstim surgery done. I had it done on November 2nd 2010, it was easier than the trial surgery. But the down side is that this isn't working as well as the trial. I went to the doctor today and he told me it can take up to a year till the best results. I have to say that I have some good results, I get to sleep for 2 hours at a time instead of 1 hour. That is enough to be happy about.

I have been having a hard time with pain but thankful to be a patient at the pain clinic. I know that not all the people with IC get to be involved in that. I just happened upon the right doctor.

I have lost so much with this disease and sure feel like I will never get any of it back. The truth is I probably won't. I will never be pain free, never be able to eat the yummy foods of the past, and will never get back the job and friends that I had. But I have to be positive and think that GOD has done this for a reason, the reason that I haven't found yet. But I will try to be strong till then, this is hard to do, but I am trying.

I will make more efforts to post updates here. I wish that IC was cured!♥

I have found some help

First off I am unsure why when I go back and look at previous post that they are just symbols? If anyone has any ideas on how to fix this problem please let me know.
I went to my pain clinic doctor on Thursday and was very happy. Not only am I getting some help with my pain but they called my urologist and got my lidocaine script made for a full month. Now I only have to pay 15 a month instead of 15 for 5 days. I am so happy that they are helping me.
Today I was able to be in less pain but this evening I have started having a flare up. In a way I am so worried that this could be a reaction to the medication. But I have 3 days before the doctors office is open again so that is 3 more days of taking the medication and praying that the flare up calms down.
Well, it is the holiday weekend and another one that I will not be getting out and enjoying. But I pray that with the new interstim thearpy trial that I am doing on the 28th this will be the last holiday that I will be stuck in the house because of my bladder. My husband wanted to go see his parents but that is over 4 hours away and no way that my bladder can handle the car ride.
I pray that my IC sisters will be able to get out and have a wonderful time this weekend. Heavens knows we all need to just have fun and relax.

Off to another Doctor

The past few days have been busy. I had a wonderful friend/little sister come over and see me for a day. I am trying to get the house cleaned and ready for winter. Yes, I know we just moved and it is probably clean to some people but I see a bunch of things that need to be done, vents are very dirty, cob webs on walls and ceiling (not sure how I am going to get all off the ceiling with it so high up) and more. My husband has PT three times a week but is able to drive himself now, that is a relief.
I have my Interstim Therapy trail scheduled now it is the fear of having it done, will it work or will it all be for nothing again. Just like the 9 DMSO treatments that I had done. I pray that it will help reduce the amount of times I go to the bathroom, even if it would only reduce the night time ones. I go to the bathroom at night between 12-15 times and that is me going to sleep at 11-11:30 and up 7:30-8. I often wonder how I am caring on durning the day.
Today I am off to sign a pain contract, a little nervous about what all is going to be required of me. But excited that I might get actual relief from the disease that has taken my life hostage.
In closing I hope that everyone is getting along better today than they were a week or even a month ago. So times we need to look at the picture of how do we feel today compared to last week or month. Maybe we have made advances. I love all of you and hate the fact that we are all in this fight together. I wouldn't mind caring the fight by myself so everyone else could live.