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.
Friday, April 30, 2010
Wednesday, April 28, 2010
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.
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, April 26, 2010
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.
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.
Sunday, April 25, 2010
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!!!!!!!!
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!!!!!!!!
Wednesday, April 21, 2010
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.
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.
Tuesday, April 20, 2010
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!
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!
Sunday, April 18, 2010
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.
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.
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