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.