Another day that was a little better. It is such a relief not to have the very intense pain! I do the best in the morning. As the day goes by it seems to intensify. I become very tired quickly. It was a quiet day, though. The younger two kids went to Karleen's house for the long weekend so it will remain quiet. It is always hard to have them go but it is probably the best for all at this point.
Kyle takes me out for a drive every evening, which I enjoy. I didn't go very much while it was really bad because it was just too painful. Last night, though, he took me around and we stopped at our churchs' new location and it looks so good! It is so exciting that we are now worshipping in our own facility. I am sad that I missed the first service there. I am hoping the noise will be better there but we will see. Someone told me they thought it was going to be much better for me--I really hope so!
Thursday, March 3, 2011
Wednesday, March 2, 2011
Wednesday
The days seem to blur together so I have decided that titling each post with the day is a good way to keep track of where I am in the week. :)
I am thankful to say that today was much better than the last several days have been. I was hesitant to admit it but finally called Kyle at about 9:30 am and told him that I was doing better. I think I am back to pre-spinal tap but not back to where I was a few weeks ago. I am still very sensitive to noise, light and activity is very overwhelming, but still not nearly as painful as it was. I would love to be back to "my normal" but am very thankful that I am improved. However, I think that my emotions are on high now that I am thinking a little bit more. I don't like that very well.
We found out today that the UCLA doctor requires a significant upfront payment for a telephone appointment so we are waiting to hear what the other two doctors would charge or how they would handle this type of situation. We have found that appointments by phone are not covered by health insurance. So we continue to wait and pray for answers.
I am thankful to say that today was much better than the last several days have been. I was hesitant to admit it but finally called Kyle at about 9:30 am and told him that I was doing better. I think I am back to pre-spinal tap but not back to where I was a few weeks ago. I am still very sensitive to noise, light and activity is very overwhelming, but still not nearly as painful as it was. I would love to be back to "my normal" but am very thankful that I am improved. However, I think that my emotions are on high now that I am thinking a little bit more. I don't like that very well.
We found out today that the UCLA doctor requires a significant upfront payment for a telephone appointment so we are waiting to hear what the other two doctors would charge or how they would handle this type of situation. We have found that appointments by phone are not covered by health insurance. So we continue to wait and pray for answers.
Tuesday, March 1, 2011
Tuesday
Today Renae and Tami graciously did my laundry and cleaned the basement. What a blessing to have family around! Renae continues to work on getting records together (and determining which in the stacks of records are the most important!), and I think she said that hopefully we will have everything we need tomorrow to get to the various doctors.
My headache is still pretty strong, but the intensity that I have while being up seems to be improving. I continue to spend most of my time laying down but have found that I can be up longer periods of time before it becomes unbearable.
This has been quite a struggle again. I just wasn't prepared to deal with this again. Now that the shock of it has worn off I am learning again to live day by day. My head hurts to much to worry which I suppose is a good thing. I am very grateful for the encouraging words on the blog and by email as well as phone messages and acts of kindness shown to us again. It reminds me that although I feel very isolated at home, there are those that care. This is a dark and dreary road but the Lord continues to be faithful.
My headache is still pretty strong, but the intensity that I have while being up seems to be improving. I continue to spend most of my time laying down but have found that I can be up longer periods of time before it becomes unbearable.
This has been quite a struggle again. I just wasn't prepared to deal with this again. Now that the shock of it has worn off I am learning again to live day by day. My head hurts to much to worry which I suppose is a good thing. I am very grateful for the encouraging words on the blog and by email as well as phone messages and acts of kindness shown to us again. It reminds me that although I feel very isolated at home, there are those that care. This is a dark and dreary road but the Lord continues to be faithful.
Monday, February 28, 2011
Monday
Time seems to be creeping by. Why does time fly when you are having fun but barely move when life is tough?
Another day of challenges. I suspect that I have been having spinal fluid leaking since the spinal tap, which is probably what has intensified the headache so much. I am finding that if I lay down for most of the day I can control the pain a bit and today I was able to be up a little more before it became unbearable. I can have a blood patch done, which seals the small hole in the spinal cord but I think that I will just let it heal on its own at this point and stay down.
Another disappointment--my local doctor once again applied for me to go to Mayo and we got the rejection letter today. It is discouraging to be rejected by a hospital that is supposed to be for difficult cases. The letter is vague but I think that they believe there isn't much else to do.
My sister Renae is getting records together and we are going to send them to UCLA and a univerity ns group in St Louis and a university ns in Columbus Ohio. They were each chosen for the fact that they have each worked with at least once case like mine. So we will see if I will get the acceptance letter or rejection letter from those, but at least we aren't counting on just one.
Another day of challenges. I suspect that I have been having spinal fluid leaking since the spinal tap, which is probably what has intensified the headache so much. I am finding that if I lay down for most of the day I can control the pain a bit and today I was able to be up a little more before it became unbearable. I can have a blood patch done, which seals the small hole in the spinal cord but I think that I will just let it heal on its own at this point and stay down.
Another disappointment--my local doctor once again applied for me to go to Mayo and we got the rejection letter today. It is discouraging to be rejected by a hospital that is supposed to be for difficult cases. The letter is vague but I think that they believe there isn't much else to do.
My sister Renae is getting records together and we are going to send them to UCLA and a univerity ns group in St Louis and a university ns in Columbus Ohio. They were each chosen for the fact that they have each worked with at least once case like mine. So we will see if I will get the acceptance letter or rejection letter from those, but at least we aren't counting on just one.
Sunday, February 27, 2011
Sunday
I have found that if I stay laying down for quite a while that my headache is more manageable. The longer I am up the worse it gets, which to me (non neurosurgeon that I am) indicates a low pressure problem. My family is getting involved to help me get some help somewhere. They have some ideas but we are a ways from answers at this point. Living in the midwest does limit my options that seem more doable.
Saturday, February 26, 2011
Saturday
I am not so confident that the drug coctail is going to work. The second dose was this morning. It gives me some relief but not dramatic. It has gotten stronger this afternoon so Kyle just gave me another shot. One more day and then we may need to come up with a new plan.
Friday, February 25, 2011
Friday continued
I had the drug cocktail this morning which was a good thing because the headache was very strong again. It helped for several hours but by 4:00 I was quite miserable again. Kyle gave me a shot at 5:00 which has made it bearable. I'm hoping that tomorrows second iv dose will give more long lasting relief.
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