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.

Feels different

First off not real sure why when I went to look at my past posts it looks as if they are written with symbols and odd letters. Not real sure if that is just my computer or what I will have to check on that.
I have a question that I am going to ask all of you and then on my facebook. For the past two day I have been have a lot of trouble going to the bathroom. I feel the urgency and the awful burning but when I get there I can only go a little. I am in so much pain and now don't even get the relief of going to the bathroom. I have made a phone call to the doctors office and they are going to get me into see a different doctor on Thursday to see what is going on. I need so help now. I can't stant this it is hard to sit, lay or even sleep. Does anyone have any ideas.
Thank you!

Been Gone!

I have been so busy and just haven't taken time to keep up my blog. I am so sorry to all of you that have read it.
I have been to the urologist and they want to do the interstim therapy trial. The bad thing is that I have to come up with my cobra co-pay first. I have to come up with that real soon or I will not be able to keep that any way. I then made an appointment with a new primary doctor. When I got to my first appointment I was not doing very well (pain). She was asking all the normal questions and then asked me if I wanted that appointment to be the normal new tests or getting set up for the pain clinic. Wow! I wasn't expecting that, for the first time someone was offering to help me with my pain. I didn't even tell her how much pain I was in. God works in very odd ways.
My husband had a complete left knee replacement a month ago. He is doing very good. He has therapy three times a week and of course hates it. He is getting better and that is what counts.
We have moved and are completely unpacked and now finding all the little and big things that need to be fixed here. The good thing is that we are renting. I do love this house, I would buy it if we had the money.
My pain has been real bad but I don't have the time to think about me right now. I try really hard not to let my husband or anyone else know how much pain I am in. I normally lay in bed and cry after he has gone sleep. I have worked so hard to keep my diet within the limits that I can have. The sad part is that I find new things all the time that causes me problems. I have found even a small amount of soy sends my bladder into a fit. I know that everyone is different but when your doctor tells you that your bladder is more sensitive and seems to be in more pain than most of his other patients, I feel alone.
I know that I am not by reading the post on my facebook but I don't get a chance to talk to those people.
My best friend is having a lot of trouble with her gallbladder and can't get in for the test for a few weeks. She is in so much pain, but she did some research and found a diet that is suppost to help when you are having gallbladder trouble. The diet she is having to work with is very strict also. The good thing about her case is "Praying" after her test they will do surgery to remove it and she can continue on with life as if it never happened. She doesn't need the extra hassle of special diets and all the pain. What I wouldn't give to take all her pain from her. I am already in pain there is no need for everyone to feel like they wish they were dead.
I will start posting again and I pray that all my IC sisters are doing better. I pray for ya'll everyday. I am hoping that someone will come up with better medication then the ones we have. This is no life, staying home and when we do go out worrying whether or not there will be a restroom close enough. And then no matter what we do we are never out of pain. I don't think I have had a day that my pain level has been below a 5 in 8 months. What I wouldn't give to feel normal again, to have sex with my husband, to eat anything I wanted, to go for a car ride without paying for it with pain. There is so much I would like to have back and know it has become part of my life just to deal with the pain.

Almost Done

I am almost completely done with putting the stuff away. I do like living here, since leaving the house isn't really something I can do without pain. This place has a tiny yet nice private backyard. All the skylights are so nice it makes you feel almost like you are outdoors. I have had a few really bad days thank goodness for the invention of the heating pad and pain medication. I love the fact that the weather has been cool the past couple days I have been able to keep the house open and hear the birds. Not sure what is so different here but I don't have as bad of pains going outdoors as I did in the last place. If you made me take a guess I would say that it would have to be all the fields around us and the chance of chemicals and other things that would be put on the crops. All in all the place is great and my pain is awful. I guess I will always have the pain I just HATE it. I am stuck in this awful shell and I can't figure a way to get out that doesn't involve a lot of medication.

I hope that everyone is going to have a wonderful fourth of July. I know that I want to go watch the fireworks if this town has a display of them. If not I saw that somewhere they are airing them live on TV. Not as much fun but it might have to do. Get out and do as much as your body will let you. Sending all my love and prayers to all of you.

I have posted pictures of the new place on my facebook page, they are not as great as the place I would need to take a video shot of the place to give someone the full effect.

Moved

I am sorry that I haven't been on in a while. I was busy packing and laying down. Now I am moved and in more pain than before. But I know that when everything is put back where it goes I will be back to the normal pain. I like the fact that I get to put things in new places and I have a house that is really different than anything else than I have ever seen. I really wish that I could have paid someone to put the things away also. I sure didn't mind paying other people to move me. I hated the fact that it was money that could of been used other ways but I sure couldn't of done the moving. I will do my best to blog again soon. To all my IC family I pray that you are having a pain free week.

Shoulder to lean on

All of us that deal with the chronic pain day in and day out know what it is like for people to look at you different and even talk behind your back. I know that it doesn't help for good friends to tell you that it doesn't matter because it does. When you have gone through life doing as much as you want and wake up one day to find that you can only do little bits of things is hard. But then you have people that have known you for awhile telling others that you are faking all of your pain and just doing everything to get some attention. Wow, that is so correct we need attention but not that kind, we need people to hear us and relieze that we need a cure. We need doctors to hear us and they seem to turn their heads, they don't even what to know the truth. That is why so many of us have started growing a thick skin. When asked how we are we give a "I'm fine" we know that is what they want to hear. We try to tell ourselves that it will all go away and we will be better tomorrow, tomorrow comes and we aren't better and sometimes we are worse. I do have a wish and it isn't for anyone to feel my pain, I don't want anyone to go through what I go through daily. My wish is that people were excepting of us, that they saw us for the people we are and not the disease we are faking. No one can see our disease and no one can imagine the pain we are all in. The level of pain we are in on the day to day basis not the pain that comes with a flare up is not imaginable by anyone.
I understand the chronic pain and I want to be here for everyone that feels lost. We all need a friend and at times several. It takes an army to pull us through this and we need the outsiders to wake up and stop thinking so badly of someone because they don't understand. Who knows maybe they will be in our shoes someday, boy won't they look like a fool then.

I am Tired

I know that we all get to feeling worn down. I just really feel like no one in the doctors office is hearing me. I am in pain every time I go into the office, I walk in with pain and leave with it. The treatments are not helping that much, I am done with them I think. The pain medication doesn't even touch the pain, yet the doctor claims that is as strong as he can give me. Other people have told me different. I am so ready to be done with all of this crap. I want a night of sleep without the pain and bathroom breaks. I can't remember the nights of sleeping. I have tried to take a nap, I guess my body isn't that tired.
I guess I need to chalk it all up to getting fed up. There is so much going on around me and I can't go out and join in on the world that won't stop turning.
My best friend is having surgery and could use someone to help but she is out of state and I can't handle the travel. My husband is scheduled for a knee replacement in July I have no clue what I am going to do. I feel that with everything I try to do to get better I seem to gain no ground, in fact I might loose some. I guess that is just part of this disease. How lucky are we to get something that is hard to treat!

Sad day

Today was a sad day and this is going to sound so silly, my little sister went home. She has been staying with us for over a year while finishing up her college career. During this time I have grown very close to her. She has been someone that I could always turn to for a smile. She has spent so many days sitting with me on the bed because I couldn't even go out and sit in the living room. I know that she is still just a phone call away but she won't be there to watch TV with and I won't be able to hear about her day as she walks through the door. I know that she will visit and we will talk on the phone, she called me to let me know she was home and missed me. Things are just not the same. It is raining outside I think that is Gods way of telling me it is okay to be sad and cry a little.
Well tomorrow I am off for the NINTH treatment, I have every hope that this will be the turning point. I can feel it, we are going to get some of our best results from this treatment. And then next Monday I see the doctor and we will figure out a way to get this awful raw feeling that is mixed in with the pain that makes my day a living hell to go away. I just have faith that I won't be forced to live my life stuck in my house more to the point stuck in my bathroom and bed. Faith is all it takes and I have plenty of that.
As many of you have read in the past few blogs, I had a wonderful friend contact me from my high school days. I have been so happy to catch up on all the things that we both have missed out on. I really think that it is sad, as we leave high school we all tell our friends that we will always stay in touch, and we plan on it. Then life takes over we have to much on our plates to think about us let alone keeping up with our friends. Thankfully in this day and age of facebook and myspace people are able to find each other and make the connection that they never intended to loose. So if there is someone that you are wondering about don't be afraid to look them up. They might be thinking of you too, and it never hurts to just say HI. We all need to know that someone out there is thinking of us and they care.
I love all whole IC family and pray that someone finds a cure for us real soon. No one should have to go through what each one of us go through on a daily basis.

A Night Alone

Last night since my husband doesn't get over to see his family much he decided to spend the night over there and come home today. It was really nice not having to worry about waking him by flushing or moving to much getting in and out of bed. I got up just as much and didn't really sleep any better but it was just the peace of mind.
The last couple days have been spent on pins and needles, my little sister has meet a wonderful young man. They were talking everyday for hours at a time. Friday he went to a friends house and we haven't heard from him since. His phone is off and she only knows of a friend that works with him. She has contacted him but of course he has no idea. The reason I am writing about this is we never know how much we put other people through. I would have never thought that she would have needed a contact number for him. We all know people that we care about and usually speak with daily. But what do we do when you haven't heard from someone and have no other way than the phone to get a hold of them. This has lead me to believe that we all should have back ups. People that are the go to, they would have the special information about us. I know think that when you start seeing someone maybe they should give a list of contact numbers, that way if you are truly worried about them you can call someone.
Today has been cool and rainy out. Sure fits the mood for this Sunday, the pain is here and sure wants to be center stage.

Old Friends

Today started out really sad, my husband got up early and headed to his daughters graduation party. I saw him off and then went back to lay down, my pain had been under control over night but was sure there waiting when I woke up. I watched a little TV and put the miracle heating pad on.
When I felt like things were under control I went to log on the my facebook page. I had a friend request and I got the biggest surprise, I have been trying to find my best friend from high school for a while. I couldn't get any where on the search, but there she was asking me to friend her. I had also gotten a letter from her. During this short time she started IMing me, well lets just say we exchanged phone numbers and talked for over an hour. I was so happy and my pain finally took a back seat. I was in the bathroom 7 times during out talk and had to lay with the heating pad on. But it was so wonderful to hear her voice that I didn't care that my pain had me doubled over at times. I think that it is a wonderful pick me up after the week I have had. I know that life is not that great, but to hear a good friend is the best way to handle the bad days. Please remember that your voice could make the difference in someones life.

Good information

Yesterday was treatment number 8, when I got in the office I told the treatment nurse that I was noticing bleeding for my bladder and was concerned. She took my sample and went off to test it. When she came back she informed me that yes I did have blood in my urine and it is part of the disease. I learned that when our bladders are in a flare up and as bad off as mine is, we have no lining and there are times that our blood vessels burst. She says it happens allot and it is nothing to worry about. I didn't have an infection and to try to take is easy, put my feet up and lay down. Well that is real easy to say, I have a ever shortening window to get ready to move. To top it off my current landlord called yesterday and is showing to house tomorrow. I have the computer room half full of boxes and a huge pile of stuff to go to the goodwill. My house is not ready for anyone to come over. I guess that I will have to take some pain medication and just get the house clean. Really upsets me though he did ask if it would be okay just said I will be bring a possible buyer by on Friday therefore you need to have the house show ready. I did inform him that it would not be possible to have it show ready, I was in the middle of packing and I could only be on my feet for about an hour or so. He sounded very upset but I feel he should show the house after we are moved if he wants it to look like a show house. Oh well just one more thing to get me stressed out.
My husband and I looked at the duplex yesterday, we did fill out an app. sure would like to know that I have a place to move to. I am so stressed over the unknowns that I feel that I a hurting myself but not sure how to stop the cycle. I just need to get everything in order. I pray that God will help me with all my tasks over the next month.

What I can Handle!?!?

I was laying in bed last night in extreme pain and thought "God only gives us what we can handle." Is this statement true or just one that we tell ourselves to get through the day. If it is true I would like to tell God that I am near my breaking point. I haven't had a good nights sleep since this year started. I am in constant pain with times of worsening pain. I don't dare try to ride in a car because of the pain. Oh, lets add that I need to find a new place and get moved. Please God hear me, I don't need any more. I would love some relief if only for an hour or so. I do believe that we all have our breaking points and I do believe they are ever changing. Seven months ago I would have said there is no way that I could live in such pain and not be able to leave the house, and on top of all that have to move. Therefore our breaking points change with our days and what is going on in them. Just think about what your breaking points would be, can you over come them or will you have to change your path? Today is a holiday, I have not been off for any holiday in 3 years. I loved to work I do believe that I defined myself by my work and extra activities. I don't have any plans for this holiday because of my pain and that is truly sad. Maybe there is the next holiday, I can hope that my pain will be better.

Treatments and Pain

Since my last posting I have had my 7th treatment and trying to deal with pain. My last treatment went about the same as the one before. That day my husband and I went and looked at an apartment complex and a duplex. I was shocked what the apartment complex wanted for deposits, 400 for deposit and 500 for my dog. (She is a small dog, and she doesn't really get left alone much.)
The bathroom floor is still a part of my life, but not as much this week. I am trying to get stuff packed and everything feels like it is crushing me. I need to find a place, get enough people to help us move, and still get packed. Oh yeah, you need money for all of that. I guess it will work itself out, I just need to take a deep breath. But it is hard when you know that there is so much to do and the pain is what is controlling my life.
Here is to a wonderful weekend, I need to pack and enjoy the sun.

Changes is seconds

Yesterday it wasn't thirty minutes from the time that I got off the computer till I had a flare up. I was thinking that I was going to have a good day maybe get some more packing done and then my body decided that it didn't have any interest in that. I go over my foods and it is not in my face noticeable what I am doing wrong. I am not changing my foods. Once I find a food that doesn't hurt me I pretty much stick with it. It gets boring but I thought less chances of flare up. Boy, am I wrong on that account. Oh well, today so far is alright. Just the normal pain that I am tired of. Maybe this will be the day to get something done. My husband is getting the lawn mowed and trimmed. There are others out doing their lawns and he can't let them have a nicer lawn than him. Men they are so odd about their lawns. I could care less, mow it when it gets tall and leave it alone, maybe water it if it doesn't rain. Which is not the case lately, it has rained 4 out of 7 days.
Best end this and try to get stuff rolling. Wish the best to all the IC suffers.