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August 13, 2004

It's been a while

I haven't forgotten about writing but I have been rather sick again and just cannot sit at the computer for too long.

I saw two of my doctors yesterday and all I can say is here I go again. Monday morning at 6 am I will be having more MRI'S. This time they will be on my right hip and lower spine. Then on Tuesday I will be having a 3 phase bone scan.

Just to let you know what has been going on, I have been waking up every morning being almost paralyzed with pain. I cannot walk, roll over or even sit up. I have to take my pain meds and wait about an hour before I can even start to move. The pain was going away but now it has begun to stay and the pain meds are not even touching the pain. So sitting at the computer for any length of time is hard to do.

I am scared that the right hip has gone and I will be facing another THR, not to mention the CD I had on the left femur in May did not work so we are trying to decide to use a cadaver bone or a steel rod.

I have just been in so much pain that depression has set in again, and I just don't have any get up and go to do anything. I will tell you this disease sucks. It may not be fatal but in some ways it is, in that it kills your quality of life.

I will keep you posted as to what I find out next week, and if I can will write more sooner.

Posted by Karen at 09:39 PM | Comments (0)

August 15, 2004

So much pain

It is 2:37 am and I have been awake for about 1/2 hour. I woke in so much pain I screamed. I am suppossed to be at the hospital this morning at 5:45am for MRI'S of my lower spine and right hip. Right now I am just so sick to my stomach from pain. The doctor had started me on a new pain medicine and sleeping pill on Friday and I thought they were working but I guess I thought wrong. The pain out does the sleeping pill, and another problem is all this medicine causes constipation. I just cannot win. I am so sick of being sick and in pain. You know I keep saying why me, what did I do to deserve this? I want to wake up and this all be a bad dream. Am I still in denial after all I have been through?

I know it will be a waste of time to go this morning. I will never be able to lay there that long to have the test done, but I will try. I will let you know later if I made it or not and how it went.

If anyone reading these ever has any questions please feel free to ask away. My family doctor said on Thursday I knew more than he did about this disease. I told him all I do is research and hey I live it. He told me I was the worse case he had ever seen. I told him thanks that is one honor I wish I didn't have.

Wish me luck this morning. Oh and my prayers are with everyone that was effected by the hurricane. I have no right to complain after what you have been through.

Posted by Karen at 11:39 PM | Comments (4)

August 19, 2004

Only one test

Well tomorrow I go for more tests, a bone scan with dye and a bone density test. I made it through the MRI'S on Monday. It was very painful to lay there, but I held my breath and made it through.

The pain has not let up and I fell twice yesterday, once going down the basement steps and once on my outside steps. This just added some new bruises to my elbows and knees. My leg just gave out both times.

I have been trying to stay busy and keep my mind off things by staying busy with my support group and the NONF. I have had to take more breakthrough pain medicine lately and I don't like to do that. I try to take as little as possible, but that is just not the case right now.

Hopefully I will be able to tell you the results of all my tests in the next couple of days and they will be able to ease my pain some.

Again if anyone has any question feel free to ask. I would love to talk to you.

Posted by Karen at 11:46 AM | Comments (1)

The doctor called

Well about 6 this evening the doctor called with the results from my lower spine MRI. He said from the report it looks like I may have AVN/ON in my lower spine but we need to see the results from the bone scan. I told him that I had that test done today but could not do the other and will have that one done next week. He is calling for the report from the MRI of the right hip and I am going in to see him tomorrow so I will know the reults from that. Now from what I have been told there is nothing that can be done when it is in your spine. These are all questions that I will be asking tomorrow. I am trying to stay positive that maybe just maybe the bone scan will show something else. I will let you know tomorrow.

I was so happy that a few people wrote to me about having AVN/ON. Anyone please feel free, I have found that it really helps to have someone to talk to that understands. That is one reason I belong to a support group for AVN/ON. The link is posted on the side of this page.

I have tried to sleep tonight but again just cannot get comfortable. I know it sounds crazy but I am ready for another operation if it can take me out of some of this pain. Well until tomorrow.... Wish me luck.

Posted by Karen at 09:40 PM | Comments (0)

August 20, 2004

Going away for a few days

Just a quick note to let you know we are going away for a few days. Really have not found out too many results yet from my test, but hope to next week. I will be taking the wheelchair and trying to enjoy these few days. See you when we get back.

Posted by Karen at 08:05 PM | Comments (0)