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.

Diets this one or that one

I was looking over the diets that I have for IC. On all five of the diets there are different foods on the good list and the bad. I have found that some of the foods on one good list are on the bad list on another. I do realize that we all are different, that is why it is so hard to treat us. But on these diets there should be better disclaimers. I can say for me there are foods on the good list on several of the diets that I can't have at all. I am not sure about the bad list if I can have any of them. But I do realize that we all have a different bodies and different triggers, that is why it is so important that we share things with each other. This way if we are not have a real bad reaction to a food but not feeling get and just over looking the symptoms we might read that someone else has had a bad reaction to that food. Then we can check it out. We are all a big family and we need to help each other with this unforgiving disease.
Hope everyone is having a day full of sun and no pain.

Treatment #6 done 3 more to go

Wednesday night was the night from HELL! I spent most of the night laying on the bathroom floor crying. I took the medication I have been given nothing help the pain, I couldn't see the since in a large ER bill to help my pain. I feel it is easier to deal with the pain than that bill. Thursday was sup post to be my last treatment in this round. I got there but in a lot of pain. I had to lay down in the waiting room I could not handle the sitting up. The treatment nurse took me back and asked how the week had gone. I told her that last Thursday through lat Friday were wonderful and it seemed to go from there. And ended with that night and that day. She brought the treatment and it didn't help like the one last Thursday. She then went to speak with my doctor, he told us to continue with three more treatments and gave me some gel to put on my body, it is to help with the bladder. I then will see him in the middle of June. Last night was a whole lot better than the night before. I got some sleep and only was in bad pain, but I had my life line (the heating pad.) Today I have been taking it easy, I don't feel good enough to risk much.
Thank you to everyone who prays with me, this is a disease that takes a village to get through.

Getting ready

I am and have always been someone that needs to know that things are done (my way) correctly. I don't like waiting till the last minute to get things done or started. Since I know that we are for sure moving I need to start getting things done. I need to go through all my stuff (crap) and figure out is it really worth moving or should I give it up. I know that I have to do things in sections, that way I can control the amount of down time and pain. But the first thing that needed to be done wasn't really something that you could take a little at a time. It took all day I did spread it out but it had to be done all at once. We have an extra room and it has been used as storage, we probably won't have the extra room in the next place. So I needed to go through all that and figure out what went and what stayed. This way as I do get packed everything will go in the extra room. Great idea, but it still was a lot to tackle. It was amazing how much I was willing to say goodbye to when it was the thought of me having to move it and find a place for it. I loved some of the things, well most of them, but I couldn't keep everything it is to hard on a person to keep everything in their life.
Today is a case of I REALLY HURT!!! But there are going to be a few of these days that I am going to have to live with. After the move I will be able to rest, but hoping by doing a little at a time I won't have PAIN FROM HELL!
Tip for me and everyone else, Know what you really need to do and do no more than that. You know yourself better than anyone else. Don't let other people tell you that you have to do something or on the flip side that you are not able to because you are sick. That hurts me when someone says it. I should be the judge on what I can handle no one else. Everyone has a voice make sure yours is heard clearly.

Dreams and Goals

Last night I was laying in bed thinking of all the goals that I use to have and the goals and dreams that I now have. While I was thinking of them I kinda was struck by what had changed and what would other think of my new goals. They are so small and most people don't think twice about the acts. In fact I doubt the normal person even thinks about them at all. Here are some of the new dreams and goals that I have they are no order, think how yours have changed.
-- I want to be able to not have to worry where the bathroom is, how many there are and can I make it.
-- I would like not to have to go to the bathroom every 10-20 minutes.
-- I would like to be able to sit up for more that 40 minutes without being is extreme pain.
-- Love to be able to get into a car and just go somewhere
-- Make love to my husband without fear of the pain during and after
-- Go to dinner with friends and family without worries of food.
-- Go shopping (kinda goes along with the car)
-- Get up and go to work in the morning
-- Do a morning routine shower, get dressed, makeup and hair without breaks for relief.
I know that I could continue with this list for a long time, we all know how this disease has affected us. I just wonder how many of us have really thought how our dreams and goals have changed. It sure made me sad in the fact that I might not be able to do the things I wanted. But in a way happy to know that I have a lot more to challenge me in the future. To all my brothers and sisters out there remember we can get through this but it won't be without tears and a lot of support.

My anniversary

Yesterday was my eighth wedding anniversary, I tried very hard to feel good enough to have sex. I rested from Friday till Sunday, my body just didn't want anything to do with sex. I really wanted to have that intimate moment with my husband. We did spend time together laying on the bed and talking, just not the same. I made us a roast and the stuff that goes with it. It was a nice day, just not the fairytale.
Last night I was able to sleep without the heating pad, thank goodness the weather is getting warmer and we don't have air conditioning. Today is pretty much just like every other day, go to the bathroom and be in pain.
I did so checking on housing in Yakima and Ellensburg. Still unsure of where I want to live. Praying that I get well enough to get back to the work force.

Unpredictable

I'm sure that most of us with IC know that everything is unpredictable, that sure goes for yesterday. I was feeling pretty good, I had my pain under control with a little help. Around 8pm all that changed I started my flare up, and there is no way to help get this pain under control. I have been trying to deal with this on since then. I went over all my foods for the day and there is nothing that jumps right out and says this is what you did wrong. Therefore I am putting all those foods on the maybe list, they were on the okay list. After I am feeling better I will try them one at a time. Just sad that you can be having a decent day and it can all change in minutes. I have to do my best to feel better today. Tomorrow is my eighth wedding anniversary, I have been looking forward to this day!!! My husband deserves more from me than a kiss and for me to tell him that I love him. With me not working money is tight so I can't buy him anything, but I don't need store bought stuff to show him what he means to me.
I hope that everyone is having a flare up free weekend. My love is with everyone of my fellow brothers and sisters dealing with this unfair disease.

Treatment #5 Done

Yesterday was treatment #5, I have to say this was the first treatment that I have felt better for several hours after wards. I was able to hold the treatment for 45 minutes. I felt a little pain and discomfort so I took one pain pill. That worked, I felt good clear through to this morning. Today hasn't been terrible, I have felt the raw feeling (I hate that feeling like my bladder is an open wound.) and a small amount of pain. Again one pill calmed the pain down. I AM SO HAPPY!!
I did ask the lady that does my treatments about the feeling I get when I go outdoors, she doesn't think that it is anything big. I don't know what other people might be using on their lawns that could make me have a reaction. I am on an allergy pill already so maybe it will pass.
Still trying to figure out a place to call home for July. Not sure what city to hang our hats in, this one in case I can make it back to work (outside the home) or where my doctor's office is. I have been thinking about taking classes to do medical transcription. I need to get an updated computer and I think that would work for me. No car rides to work (since that is never a good one for me) and able to work it around how I am feeling. Still need to do a little more research on the issue.
Thank you to all that have keep me in your prayers, it is working. Love all of you.

Does being out doors cause problems

I have been keeping track of an issue that I have been having. Every time that I go outside for a few minutes I get this feeling that my bladder is raw and on fire. I have tried not going outside and the feeling isn't as bad. Is there something that is in the air that can cause my bladder to have this reaction? To me this is an odd deal. I can't figure it out. I am hoping that some of my readers can help me with is issue. I have gone to several blogs and haven't come up with the answer.
Tonight a good friend of mine is coming to see me. I am so happy that she is coming over. Since I have been having flare ups and not doing great I haven't seen my friends. I am blessed to have a little sister that spends time with me almost everyday, and a loving husband that makes sure that I know that he still loves me and finds me attractive.(This one feeling attractive is a double edge sword, I feel so bad that I can't be a true wife to him) It seems that people are afraid that I might make them sick. When I try to explain to them that it is not a contagious disease they have some other reason that they can't come over. It is hard for those of us who are use being out of the house more than being in the house to now have the reality that going out to do things cause us extreme pain. I am still having trouble with this reality, I want to go and do things. My eighth wedding anniversary is on the 16th, I was making plans to have a very romantic evening. Go out to a restaurant that we don't normally go see a movie and go for a walk. Now we will have to make something at home, rent a movie at red box (my husband will have to get) and enjoy each others company. I pray that next year I won't be having flare ups around our anniversary.
Tomorrow I am off to the doctors for the fifth treatment. I am excited to see if this one is the one that is going to turn the whole thing around. I have my fingers and toes crossed, and saying a sweet little prayer to go along with it.

No more FMLA leave

My boss called me this morning and asked if I could please come in for a meeting with the director. I went in for a 11am meeting, having some clue what this was going to be about. My husband dropped me off and went to the bank. I had my meeting and yes I was told that my FMLA leave had run out as of May 1st. This is hard to take, I am trying so hard not to break down into tears.
I came home and called to doctor's about why the pain medication had not been refilled, the nurse informed me that I have IC (Wow that was news!) and pain medication would not take away the pain. This I know but it makes it more bearable. She suggested that I learn to live with the pain, I do have a life long disease that has no cure. She was talking to me as if I was not an adult but a child. This was just another blow to me put that with this mornings stress. The nurse did say she would go speak with my doctor but would not promise that he would let me have the medication. I feel she will not even go talk to the doctor.
Yesterday the weather was sunny, warm and calm. Today we have gray skies with light rain but still calm. The day sure fits my mood.
Wait, the doctors office just called me back, they have refilled my pain medication. I guess the nurse did take the message to the doctor. I was wrong.

Happy Mother's Day

I would like to say Happy Mother's Day to everyone! Today hasn't been the best, I am out of pain medication and therefore trying to do it alone. The pain is hard to deal with nearly impossible, but I am trying I thought getting on the computer might help me take my mind off the direct pain.
The weather outside is beautiful, the wind is light, the sun is shining and the birds are singing. It sure does help with the mood.
Everything is pretty much the same, I just have added pain and over the counter medication doesn't even take the edge off. I am taking it in hopes I will be able to sleep tonight.
Not sure what more I can do for myself, I have taken a warm bath, I have the heating pad on and I am getting up and moving around. Well it is just another day, maybe tomorrow will be better.

The Day after

Today is the day after treatment #4, I am in less pain than I was two days ago. But still in enough that I need assistance with the pain level. Today is laundry day, I believe that the garlic smell gets into the bedding and I want it gone. I am not able to stand for very long today, the feeling that my bladder is falling out is a little worse today. It is something that I can deal with, just don't get up and walk around as much.

4th treatment

Today is treatment number four, I held it longer than the other times. I still have some raw feeling in the bladder and still some pain. At this time everything is a little less than before the treatment. I just want say a big THANK YOU to the states for putting in rest areas, without them I would be peeing on the side of the road.
I am hopeful that this is the treatment that is going to turn this all around.

No Wind, but still in Pain

Sometime in the middle of the night the wind stopped. It is nice not to feel like you are going to be blown away when you go outside. The sun isn't out and we are getting light showers.
This morning I didn't make it through the shower without having to sit down. I was in so much pain that standing was not an option. I am doing my best to not move to much today. The pain medication I know takes some of the pain away but not enough to make me feel good enough to do anything. Tomorrow is my treatment I can only hope that it will bring me the much needed relief.

Good Tuesday

I know that it is difficult to keep my spirits up, but I have found that if I am down others around me are down. It is like a disease all it own, but this is one that we can control. I have a hard time keeping things positive, I don't feel that there is a lot to look forward to. But when I actually project that feeling my husband and sister become short tempered. Last night was evidence of this, I was upset about having to move earlier than I really was (and are) ready for. I am in so much pain and can't work or even get out of the house. So I will admit the mood wasn't the greatest. Then my husband got snappy and we got into a small heated argument. My little sister is going through a lot and this just added to her stress. In one way it is sad, I have found out how my mood changes the tone for the whole house. But I do have my days of feeling that the whole world is against me.
Today I am going to do a bit of light house cleaning. Two loads of laundry and light cleaning in my bathroom, it has to look and smell good I am in it all the time. My night was the average night for me up every 45min. to an hour. I hate to admit this but I am getting use to the bathroom routine, day time 10-20 min. and night like I said. I am not able to deal with the pain, raw feeling and the pressure as well though.
Good news the sun is out and the birds are singing. The wind was high yesterday, some tractor trailers jack knifed in the roadways yesterday. The news report said there was several small accidents due the the high winds. Today the winds are much lighter. Great news for all the people on the roadways.

Great News

I got some news today. My little sister lives with my husband and I, she pays some rent, she announced that she will be moving at the end of this quarter. She had intended on staying here till September, we were going to move then. I thought I had time to save up for the first last and deposit. (Used all that has been saved up since I have been out of work due to the IC.) I know that it is something that she feels she needs to do. It is just more added stress that I really didn't want at this time. I am so torn, do I find a place in this town where I worked till Feb. In hopes that I will get to go back to work! Or do I move 50 miles away where my doctors office is? I am so worried that I will do the wrong thing. I guess I had thought that by September I would have more answers. My next doctors appointment isn't till the middle of June. I will be moving by then. Of course I will know how I feel, at this time is not positive. My couldn't stand long enough today to do the few dishes that was in the sink. My husband went grocery shopping again today,and I had to stay home. I can't complain to much, I still am alive and I have hopes that I will get better. Another treatment on Thursday, this is the one that is going to turn it all around. I have to believe that it will work for me. I am still loosing my hair not large patches just more in the brush than normal, but I'm still taking the elmiron.

The PAIN

Around 5pm last night I was walking into the kitchen and I almost fell on the floor. I got this intense pain in my bladder, the raw feeling was worse and it felt like it was being riped out of me. I took my pain reliever right then but it won't take away my pain. While laying in bed crying silently I was considering going to the hospital for pain relief. But if I did that I would have to tell my husband how bad the pain was (he had no idea) and then have to pay that bill. I didn't want to do either of those things. I just did the best I could. I am still in intense pain, I have to take very small steps and walk as softly as I can. If my bladder gets jarred around it sends major pain waves.
I have been trying to figure out what I did different and can't. My diet is being followed strictly, I take my medications on time without fail. I just can't figure this disease out.
Sometimes it helps me to write this down, I hate to burned my husband with it. And it is hard to keep the feelings locked up inside. I need to let them out and hope that someday there will be someone who knows how I feel.

As the wind blows

I am starting to wonder if the wind will calm down. I love a breeze to go through the house but when the wind shakes the windows not a nice. I go outside to let my little dog out and the wind tries to blow you off the porch. Then there is your neighbors trash issue, anything that is not tied down off to the west will end up going through your yard. Now if it stays and you have to pick it up all depends on if a structure is in its way.
Today is average, pain is there but with the pain medication it is not making me cry. Everything else is the same, but at least it is not worse.
My husband is back and got the lawn mowed. Since Nascar is on that is what is on the TV right now.

Day After

Yesterday my husband and I went down to Yakima, went out for a bit to eat and did a little shopping. I don't think I have ever paid attention to how many times I go to the bathroom. I know it is every 10-15 minutes but I didn't think about that being a problem. That was till I went to a restaurant and in one hour went to the bathroom 7 times. People start looking at you funny and then you feel like everyone is watching you and talking about you and why you are going to the bathroom so much. After that we went over to Target to grab the things we needed, I walked into the store and didn't even make it to the back of the store before I was in terrible pain. I found a spot to just sit on the floor. I had my pain pill an hour before that. We didn't get everything we needed but it had to do, I couldn't walk around anymore.
From there we went over to get my treatment. I expressed the fact that the previous week was terrible with the pain and the young lady who does my treatment did a little changing of the cocktail. I left the office feeling better. About 20 minutes later I felt like I was on fire and that is when the itching starts. I was in a lot of discomfort but I made it home with the cocktail in. But was happy the it came out. The rest of the evening I was in some pain but it was controllable. My husband has gone to help his family with the move of his grandmother. So he didn't really have to smell me for long.
This morning I have had some pain and pressure, my bathroom breaks are my normal. I am slowly getting the bedding washed from the garlic smell, it is now the routine the day after all the bedding is washed or febrezed.
The weather here is sunny mid 60's and very windy. But it makes for a nice day when the windows are open.

New Medicine

My mother-in-law came over yesterday, it was so nice to see her. I feel bad that I can't go help her pack her mother up for the move back the her house. I know that there is so much that needs to be done.
My pain is not going away, no matter how much I hope and pray for it. When I called my doctors office on Monday and asked about doing something different, I was given a new medication. So far I am not seeing that it is helping much more than the old pain reliever. The down side to this new one is that you have to take it before you are in a lot of pain or it won't work as well. That is what the information told me. I usually try to use my thoughts and a heating pad first and then if that won't work I take the medicine. Maybe this is where I am going wrong. Maybe I am allowing the pain to go to far before taking something to control it.
Well, tomorrow is the next treatment. I sure hope that this one is better than the last one. I am going to have lunch with a good friend and then go to the doctors, since no one wants to be around me after the treatment.

Monday

Today I had a phone appointment with a lawyer about SSD. I sure am not liking the thought that I would not be able to go back to some kind of a job. But I don't want to be told that and not have a clue what is the next step. I like to be well informed. I don't feel that I am ready to start the paper work for that yet.
I wish that when you get told you have a disease that is this life changing there was a place that you could go. Input your name and information and they would pair you up with a mentor. Some one that has been living with the disease, with the pain and all the problems that come with it. I am lost out on the open sea, I am doing what I think is right but not sure what I really need to do. I am scared, my family loves me and does care, but they sure don't know how I am feeling.
I am so worried that the DMSO treatments are not going to work, my pain level has not gone below an eight since my treatment. I have started a little bit of shaking in my hands, is this normal or could it be something else? My husband had is doctor's appointment for his knee replacement and I am in so much pain I couldn't even think about going with him (I go to the bathroom every 10-15 min.) Wow what a life!
I have been trying to keep my spirits up, I shower and do my hair and make up daily. I do this because I want to feel pretty. I believe it helps a little. During the times that the pain medication is working its best I can smile and kinda feel normal.
I know this was me feeling sorry for myself, not so good. I do try to be happy, only wish there were mentors to help out.

WOW!!!

I had my DMSO treatment on Thursday, it has been hard since. I have been in pain and feeling like my bladder is raw since. Wow would have never guessed that the second treatment would be worse than the first. I am worried how the third treatment is going to go, I hope closer to the first.
I have not sleep well, bathroom breaks are still up around the 30-45 minutes. Every great once in a while I get to sleep for a whole 90 minutes. (I think saying 90 instead of an hour and a half, makes it sound like more.)
My mother-in-law is coming over on Tuesday. It will be nice to see her again, I really miss the outside world. She is headed over to her mothers to move her back to their house. Then on Thursday after my husband takes me to my treatment he is going to head over to his parents. He is taking is father and brother over to get a U-Haul to move grandma. It is cheaper to do it this way instead of paying for the u-haul both ways, over 700 miles they would have to pay. I think my husband is doing this to get out of having to smell me on Thursday, I guess I would too.
I hope that everyone is having a better week than I am. I sure hope that this all gets better soon. The pain is hard to handle but then you add the feeling that your bladder is raw and being burned with hot liquid that has broken pieces of glass in it. Hoping for a better week!!!!!!!!

WINDY!!!

The wind is blowing today!! The news says gust of 50 miles per hour. Of course my bedroom faces west and most of the wind comes down off the mountain and hits that side of the house. At times it is so windy that you can feel the bed move.
Last night wasn't much better up every half hour. I'm getting pretty worn down. I sure hope that something helps the bathroom breaks. I have one more week on this medication and then I will try the other one for two weeks. And there is the DMSO treatments, hoping they will help some. Tomorrow is the next treatment, not as scared but still worried.

Rainy Day

Good afternoon to everyone, it is cloudy and a little rainy outside. But in away it sure fits the mood of the day. I had a really bad night, up every 30 minutes last night. I can't figure out why, I didn't eat anything different. I guess it is something I don't have an answer for.
I am quite tired of being at home. I have started getting dressed in going out clothes and putting makeup on everyday. I do my hair like I am going to town, my husband says it is a waste of money, but it makes me feel better. I want to feel well enough to go out.
I am researching jobs that can be done from home but not coming up with much that is creditable, any ideas anyone? I have even thought about being an awful telemarketer, at least that is something. I sure hate those people that call me wanting to see me everything under the sun. Most of it is worthless.
I do think I am going to set aside some time everyday for reading and maybe some letter writing.
I hope everyone is having a wonderful day!

Cottonelle

The other day when I picked up my medication at the drug store, I knew that I was down to my last two rolls of toilet paper. I was looking at the different brands, I currently had Quilted Northern. I am low on funds so I was looking at the prices, since I go to the bathroom every 15 minutes. Cottonelle double roll twelve pack was 6.95, that was a lot less than anything else. Therefore I got that. Last night I opened the package to use it. It was like using sand paper to wipe with. I am so upset on the commercial they act like it is so soft, you could use it as a pillow. That is bull, I now need something to replace it. I am so upset, DON'T EVER BUY CHEAP TOILET PAPER!!! Buy what you know doesn't scratch you.
Today is beautiful out, I think that my husband would not agree his Nascar race has been postponed till Monday. I guess it isn't beautiful in Texas, if they were having the race in Washington it would be a go.

Saturday full of Hope

This question is for anyone with IC that may read this. Today hasn't been a bad day with pain, I have keep it under control. I am having a terrible time with the shakes. I don't know what it could be, not as much my whole body shaking but my hands. I feel a little off, I have eaten and have no problems prior to this with blood sugar levels. If you have an idea that would be great.
I do believe that I did a little to much yesterday, although if I was to say it out loud my husband would say "I told you that you were doing to much". I still have to get use to my limits. I am going stir crazy, and would love to do things that take very little effort.
I got a heating pad and started using it yesterday, that helps the pain a little. The bad thing is it can only helps if you are in that one spot.
I pray for everyone effected by this disease. I know that it is hard for the ones who have this to come to grips with the pain and change in lifestyles. But it is also hard for the ones who love and care for us, they have to change the way they live their lives also. My husband doesn't get to eat as many of the foods he loves just because it is so hard to prepare two meals. And of course the intimacy is not quite like it use to be. Most days I am in so much pain I don't even want to be touched and that is hard on him.

Day after

My husband say that I smelled like garlic all night long. I feel bad for him and my sister. I sure don't know what to do for all the other treatments to make it better. Last night I still got up every hour (to make sure that everything is still there).
Today it is nice out and I wanted to air out the house. In starting that I realized that the curtains were dusty and therefore start cleaning them. I still think that I can do everything. I got a lot done but not as much as I would have liked. The pressure makes me feel as if I am ready to give birth. My room looks better and maybe if I didn't already over do it I could do a little more tomorrow.
I sure hope the weather is nice all weekend. I could go sit outside for a little bit.

First Treatment

Yesterday I did nothing more than my wonderful days of going from the reclined position to sit in the bathroom. The pain was there and made sure that I didn't forget about it. My night was pretty good I got up every hour, but from 5am till 6:45 I sleep. That made me very happy.
Today I got up with a purpose, I was going to see my doctor and discuss my options. I also start the DMSO cocktail today. The 50 mile car ride was unbearable, I did take a pain killer there is only so much those can take care of. I got to see my doctor and he took me off Prosed and put me on some other medicine plus gave me two samples to try. I seem to go get meds and they don't work, so he gave me 2 different samples that I will take for 2 weeks each before having to spend money. He told me that I don't have very many more options. I can try the electric stimulation of the bladder if the DMSO treatments don't do much. The other thing will be to go to Seattle for a second opinion. We have already tried what he knows. He then put me off work till July. I hope the DMSO treatments work so I can get back to work before that. But I probably won't have a job if it takes that long.
As far as the DMSO treatment it sure wasn't pain free. My husband says that I burned his eyes and throat all the way back home, from the awful garlic smell. He says it is like I soaked in a tub of garlic. I feel sorry for him that he has to drive me. I just hope the smell goes away before bedtime.
For everyone who reads my blog please keep me in your thoughts I really hope this works, I want so badly to be back out in the world.

The flip of a switch

Yesterday was not one of my better days, can't wait for a good day. All the books say they do happen. I was in the bathroom every 10 minutes, I would just get settled and the urge would come. I was able to hold the pain off for about 5 minutes and then I had to give in.
Then the evening came. I was sitting there and then I felt so weak and ill. It was like I had no energy and I was going to pass out. The only thing I could think of is go to sleep. It seemed to help some but I was still up every hour or so.
Today I am unsteady and still feel weak unsure why. I don't know if this is just a symptom or something else. I go to the doctors tomorrow and if I still feel this way I will ask. Therefore today will be what my body will allow. I don't feel a trip to town is a good idea, my husband will have to go and get my medication for me.
If there is another IC patient out there who has been through this and reads this blog I would greatly appericate it if you would give me some of your advise. I sure am lost between books and actual symptoms and what is going on. I do know everyone is different, but the best I can do is a couple of books for support.

Why

Why is it that now when I do some of the things that I love I have to pay for it with PAIN and bathroom time. Yesterday I gave my dog (Chelsea) a bath, she needs one at least every week. Then I went to town to get some groceries and stop by the medical library for some good reading. It sure doesn't sound like much for the average person. But for me just the ride in the car is enough to make me wish for another life. I love the chance to see and pick out the food that I will be putting into my body. But it all comes with a price and the price for me is extreme pain that pain killer just lessen to a point that I can lay there with out crying all day. Not to mention the every 10 minutes up and in the bathroom. Days like this I think it would be better to move a TV into the bathroom, maybe a foot stool so that my legs would be a little more comfortable. WOW what a change for two months ago, I have to wonder am I ever going to get any of my life back or is this the best it will ever be.
Last night was about the same up every hour or even less. I am not sure how I can even function in the day time. I don't take naps for fear that I won't sleep that night. But at night I don't get very good sleep because I have to use the bathroom.
Well Thursday is my doctors visit and my first DMSO treatments, I am praying that this is what is going to give me my life back.
I pray for everyone that has chronic pain and their doctors are worried about them taking to many pain killers. I don't see any way that if you are in true pain you would become addicted. When my pain is light I don't even think about taking anything. It is only when the pain makes me cry. I hope there is something out there for all of us.

Start of a new week

I got some done yesterday not as much as I would have liked. It is taking a lot of relearning on my part. I use to go all day and into the evening. Now I am in pain after 30 minutes of work. I did get some of the closet cleaned out, what I could do sitting down. At least I got something done! I so often feel as if I am taking up space in the house.
Last night was about average every 45 minutes to an hour up and in the bathroom. I think that I should get someone to paint a beautiful moral on the walls. That way I will have something nice to look at, I'm in there enough.
Today I am going to go into the medical library and get some more information. I have read The IC survival guide, and how to have a good relationship with your doctor. I am hoping to find something on treating the chronic pain that I am in. I am so tired of the pain that never leaves me alone. I feel as if I am a prisoner in my own body, like the pain now has the control. It controls what and when I do things. That isn't what I sure thought I would be going through.
This is the start of a new week and this week I start the DMSO treatments. Therefore it has to be a good week!

Positive

I had a pretty good night, at least for me, I was up every hour and a half to go to the bathroom. Not to bad at all. I am planning on cleaning out the closet and getting rid of things that we really don't need. It is quite nice out today, I believe opening the house up is in order. I would love to go grocery shopping, but I think that will have to wait for a less pain day. I do think that is one thing I miss, as silly as it sounds. When you can't walk without looking funny and need a bathroom every 5-15 minutes, it is hard to go shopping.
On the positive side. The sun is out and there are lots of birds singing.

How this journey began

I am starting a blog on advise of a wonderful lady with a disease that her family couldn't connect with. See before Feb. 03 2010, I was a very busy young lady. I was at the gym every morning for an hour and a half or more. I loved my job as a cook at a nursing home. The people were fun to work with. I didn't go to the doctor, because there was no need. I was in great health.
The evening of Feb. second I started feeling like I was getting a bladder infection. I haven't had a bladder infection in so many years. I went to the store and bought some cranberry tablets and started taking them. The next day off to work. Within hours I could barely walk. I was in extreme pain and it felt as if my bladder was falling out. I went to the urgent care clinic in the next town. Was given a shot of antibiotics and some pills to take when I got home, along with some pain killers. The next day no better I didn't even try to go to work. I decided the next day I would try work. I didn't even make it in the door of the building before I was doubled over in pain. Off again to the urgent care. Again more pills with no clue what was wrong. I was told if the pain wasn't better by Sunday to go to the ER. Well you can guess the pain wasn't better I believe it was worse. At the ER I was given more pills and told to come back tomorrow for an ultrasound and referred to a Gyno. doctor.
Monday came around I went for the test and got an appointment with the doctor for the next week. At the appointment my doctor felt that the pain was coming from my bladder. This means I needed to see an urologist. She gave me some meds. that she felt might help and started trying to get me in to a doctor.
During all this my bed has become my life. I would go from my bed to the bathroom. My bathroom breaks were running about 15 minutes apart day and night.
It took a lot of pulling of strings but I got into see an urologist doctor on my birthday. He was very kind and seemed to have some understanding of all this pain. He then set me up for a test that I had done on March 16. This is when my life changed, I was hoping that my bladder had fallen. Several women in my family have had to have their bladders surgically put back in place. That was not the case. I have Interstitial Cystitis, IC for short. This has no cure as anyone with this knows. Know I had to get all the information I could. I found that it was going to require a huge life style change. All the foods I love and grew up eating gone.
Even with the change in diet and taking special medication I have not seen a lot of relief in my pain or symptoms. I do sleep a little more, I have stopped drinking anything around 8pm and know I only get up every hour.
I still have to take pain killers, and stay mostly in bed. If I do much during the day I pay for it the next day. My love life is pretty much gone. My wonderful husband is trying so hard to understand this extreme change to his life also.
To any one out there that is dealing with this disease please write me and tell me what you have done to help you symptoms.
Next week I start DMSO treatments, my doctor is hoping that with these treatments I can get away from the pain killers.
If any one has medications that have helped take away the awful pain please let me know so I could talk to my doctor about them.
This is not the path I thought I would be going down, but since I am here I need to make it a good one.