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.