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.