I know my life is in your hands. Those are my favorite words of peace right now as I hear the song by Kirk Franklin.
I have my spinal tap scheduled for December 12, it seems so far away and yet so early. I have only had one other one that was scheduled and it was scheduled for the afternoon. I have to be there at 7:30am for a 9am appointment and I will not get home til about 3-4 hours after I am done. Basically, I will be there from a minimum of 7:30 til noon, but probably a bit closer til 2pm. My poor mom, it will be a very long day for her as she will be watching Bug at the hospital, I guess she will be getting a few new things to keep her totally occupied while I am there, Dollar store, here I come.
Now, normally, I would not go to the dollar store to get things just to keep my daughter occupied, but this is a special circumstance. We do not have a portable DVD player so I cannot just give her a movie to watch or two to take up the majority of that time, part of it will be breakfast with grandma as I will Not be allowed to eat for 4 hours prior (not that I will be awake four hours prior to 7:30am) but the rest of that time she will need to have a variety of activities that do not weigh much to keep her occupied for a LONG time. She will have a clipboard worth of schoolwork to take as well though.
Friday, November 30, 2007
Thursday, November 29, 2007
Praying
This morning my dad called, My sister was in a car accident, by the sounds of it it mangled her car pretty badly. She was not hurt Praise God, but is very shaken up. She is down in Tennessee, more than 12 hours away from home. Its so hard to have things go wrong when you are so far away.
God Please help her to have to faith to trust that you are still in control of the circumstances.
God Please help her to have to faith to trust that you are still in control of the circumstances.
The Wait
Oh how impatient am I? Let me Count the ways.
In case you haven't noticed, God is certainly allowing my patience to be worked right now, and I am failing miserably. Yesterday my appointment took just over an hour and a half before I got home from the doctors office, I love my neurosurgeon, I was so upset when I walked in their and his smile fixed that part at least.
Now I am waiting on the call from the hospital to schedule the fluoroscopic lumbar puncture. In the meantime, I finally know what the doctor thinks is causing the headaches if its not the PTC. So based on the spinal tap, I will know what the answer is soon.
If the pressures are normal, its migraines, and Dr. Pieper says we will have to medically manage them because they are winning on an average of 5 days each week.
He was also going to recommend a neurologist that is closer that specializes in Migraines, but in actuality, I don't know if I want a new doctor again, I kinda like Dr. Silverman. I know that by him not telling me he thinks they are migraines, he is pretty much trying to maintain his reputation if they aren't. The PTC was originally diagnosed as migraines when I was a kid and I was upfront with him about that back at the first appointment, so he knew the pressures were higher before any of the other symptoms appeared.
In case you haven't noticed, God is certainly allowing my patience to be worked right now, and I am failing miserably. Yesterday my appointment took just over an hour and a half before I got home from the doctors office, I love my neurosurgeon, I was so upset when I walked in their and his smile fixed that part at least.
Now I am waiting on the call from the hospital to schedule the fluoroscopic lumbar puncture. In the meantime, I finally know what the doctor thinks is causing the headaches if its not the PTC. So based on the spinal tap, I will know what the answer is soon.
If the pressures are normal, its migraines, and Dr. Pieper says we will have to medically manage them because they are winning on an average of 5 days each week.
He was also going to recommend a neurologist that is closer that specializes in Migraines, but in actuality, I don't know if I want a new doctor again, I kinda like Dr. Silverman. I know that by him not telling me he thinks they are migraines, he is pretty much trying to maintain his reputation if they aren't. The PTC was originally diagnosed as migraines when I was a kid and I was upfront with him about that back at the first appointment, so he knew the pressures were higher before any of the other symptoms appeared.
Monday, November 26, 2007
I am So Frustrated
Gracious, I am so tired of this whole mess.
This morning I saw the neurologist again. While I don't mind seeing him, I already had a strong inkling of what he had to say.
Spinal Tap, here we come.
Wednesday I get to visit my neurosurgeon again. Dr. Silverman wants to make sure that they can do a spinal tap to check the pressure. I wouldn't be so frustrated except that I technically was supposed to see Dr. Pieper on Halloween, but that got moved to go see Dr. Silverman in the first place.
Apparently my EEG and VEP weren't bad enough to have to look at those in more depth. That part is really good as I don't want to go through more of that. So, once again, I know nothing more than before and my thoughts that I knew more than the doctors in the first place was proven.
It is so hard to find the peace of God in this one for me as I asked about the tap way back on the 17th of October when I had the CT scan, MRI, and X-Rays. I thought it made more sense since that's the only way they can tell if the pressure is high.
I know God is in this, I know he wants either Me or Someone Else to learn from this, but right now I am feeling very weak and vulnerable since it seems I am going in circles to get this straightened out.
Right now, my biggest concern is if being headache free again is really worth all the hassles to deal with this.
God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world as it is, not as I would have it;
Trusting that He will make all things right if I surrender to His Will;
That I may be reasonably happy in this life and supremely happy with Him
Forever in the next.Amen.
--Reinhold Niebuhr
This morning I saw the neurologist again. While I don't mind seeing him, I already had a strong inkling of what he had to say.
Spinal Tap, here we come.
Wednesday I get to visit my neurosurgeon again. Dr. Silverman wants to make sure that they can do a spinal tap to check the pressure. I wouldn't be so frustrated except that I technically was supposed to see Dr. Pieper on Halloween, but that got moved to go see Dr. Silverman in the first place.
Apparently my EEG and VEP weren't bad enough to have to look at those in more depth. That part is really good as I don't want to go through more of that. So, once again, I know nothing more than before and my thoughts that I knew more than the doctors in the first place was proven.
It is so hard to find the peace of God in this one for me as I asked about the tap way back on the 17th of October when I had the CT scan, MRI, and X-Rays. I thought it made more sense since that's the only way they can tell if the pressure is high.
I know God is in this, I know he wants either Me or Someone Else to learn from this, but right now I am feeling very weak and vulnerable since it seems I am going in circles to get this straightened out.
Right now, my biggest concern is if being headache free again is really worth all the hassles to deal with this.
God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world as it is, not as I would have it;
Trusting that He will make all things right if I surrender to His Will;
That I may be reasonably happy in this life and supremely happy with Him
Forever in the next.Amen.
--Reinhold Niebuhr
Thursday, November 22, 2007
Happy Thanksgiving
While its been a totally chaotic month of November, God is still in control and oh so amazing.
What are you thankful for?
Me?
What are you thankful for?
Me?
- I am thankful for my family who keep me sane during all the stress.
- I am thankful for the roof over our heads, while it needs updates, it keeps us safe from the snow that's falling outside right now.
- I am thankful for Homeschooling, this month when I didn't have the energy to do school, we still got lots of learning done anyhow.
Friday, November 16, 2007
One Down, One to go
Ok, this blog has taken a totally different direction than I was prepared for. When I started writing down what my life was about, I was not planning on a recurrence of the PTC.
Yesterday I had my opthamology appointment. It was interesting to say the least. I discovered I really do know my body pretty well, when he called Dr. Silverman to give him the report, he said exactly what I was prepared for, the swelling has not gone away, but he can not tell how new it is since it appears more chronic than acute (Perhaps that's from having it diagnosed for 9 years)
I also learned that I have some minor permanent vision loss, the best they can get my glasses now is 20/25 and 20/30, while still not bad, this is the first time they have not been able to get it down to 20/20.
Overall it was not a bad appointment, Long, yes, bad no. He wants to follow up in a year and continue to monitor the papilledema as well, which figures, lol....I was supposed to be following that all along except that I was allowed to see an optometrist and they don't check as thoroughly because its beyond their scope of expertise and he couldn't see anything, oops.
So on Tuesday, I finish up my tests that Dr. Silverman ordered and next Monday I find out what they found. In the meantime, we are taking some time off of school so that I don't get too frustrated with BUG. We will start again in January with real school, right now, Bug is enjoying doing a lot of reading, but that's about the extent of it.
Yesterday I had my opthamology appointment. It was interesting to say the least. I discovered I really do know my body pretty well, when he called Dr. Silverman to give him the report, he said exactly what I was prepared for, the swelling has not gone away, but he can not tell how new it is since it appears more chronic than acute (Perhaps that's from having it diagnosed for 9 years)
I also learned that I have some minor permanent vision loss, the best they can get my glasses now is 20/25 and 20/30, while still not bad, this is the first time they have not been able to get it down to 20/20.
Overall it was not a bad appointment, Long, yes, bad no. He wants to follow up in a year and continue to monitor the papilledema as well, which figures, lol....I was supposed to be following that all along except that I was allowed to see an optometrist and they don't check as thoroughly because its beyond their scope of expertise and he couldn't see anything, oops.
So on Tuesday, I finish up my tests that Dr. Silverman ordered and next Monday I find out what they found. In the meantime, we are taking some time off of school so that I don't get too frustrated with BUG. We will start again in January with real school, right now, Bug is enjoying doing a lot of reading, but that's about the extent of it.
Tuesday, November 13, 2007
I had my appointment yesterday morning, I know nothing more than I did before I went in.
I was a bit nervous, every time you get a new doctor you are putting your trust in someone you do not know and I have had quite a variety of mixed responses from new docs. This time I was quite amazed and impressed.
He listened well, answered and asked lots of questions, seemed to genuinely care about what was going on and understand that this is more of a preventative before its too late rather than anything else.
He is sending me for some tests, an EEG, no clue why, but I am not going to stress over it as its such an easy thing and if its not the PTC than it may help figure out what is causing them.
He is also doing Visual Evoked Potentials, this should be interesting as I have never had that done before, he said its basically like my visual fields that I had had before except its how the brain registers it rather than anything else. I also get to see an Opthamologist on Thursday. Then I follow up again on the 26th of November.
I was a bit nervous, every time you get a new doctor you are putting your trust in someone you do not know and I have had quite a variety of mixed responses from new docs. This time I was quite amazed and impressed.
He listened well, answered and asked lots of questions, seemed to genuinely care about what was going on and understand that this is more of a preventative before its too late rather than anything else.
He is sending me for some tests, an EEG, no clue why, but I am not going to stress over it as its such an easy thing and if its not the PTC than it may help figure out what is causing them.
He is also doing Visual Evoked Potentials, this should be interesting as I have never had that done before, he said its basically like my visual fields that I had had before except its how the brain registers it rather than anything else. I also get to see an Opthamologist on Thursday. Then I follow up again on the 26th of November.
Sunday, November 11, 2007
SLOW DOWN!!!
Yesterday we visited the in-laws, I had forgotten til Saturday morning that we were supposed to go; DH really struggles to associate in any way with his family so this was not something he was looking forward to... I on the other hand, try to make the best and actually enjoy the visits (DH enjoys them too, he just does not see it while we are there)
Today, I woke up with a sore throat and runny nose, can we say a Cold? My whole family has been sick this month so I do not know why I thought I would be exempted. I do not really feel sick and because of that I am keeping my neurology appointment in the morning, I just will have to remind him that I do know the difference between a sinus headache and a PTC style headache, lol.
Remember to take care of yourself before everyone else so you don't end up needing taken care of.
Today, I woke up with a sore throat and runny nose, can we say a Cold? My whole family has been sick this month so I do not know why I thought I would be exempted. I do not really feel sick and because of that I am keeping my neurology appointment in the morning, I just will have to remind him that I do know the difference between a sinus headache and a PTC style headache, lol.
Remember to take care of yourself before everyone else so you don't end up needing taken care of.
Thursday, November 8, 2007
Grocery Shopping
Tomorrow is grocery day, I am spending a minimum of $40 and that's just meat.
My favorite meat market has not had a good sale in a while, but when they have good sales, they have REALLY good sales. Tomorrow I am picking up $19.90 worth of Boneless Skinless Chicken breast, ten pounds.
I am also picking up 10 pounds of Ground Chuck for the same 19.90, not bad. I will spend most of Saturday packaging for the freezer, and preparing meals ahead. I have this wonderful cookbook called Don't Panic, Dinner's in the Freezer, so far, every meal we have made out of there has been a hit, granted I do NOT cook things I know my family wont like either though.
I have a 20 meal plan that we rotate through, we do try new recipes occasionally as well as I have some Lazy days and make something out of a box but that is extremely rare anymore and we do go out too much too, but we are trying to curb that down to once a week.
I also have to go to the Three local grocery stores as well, this week they are having good stock up sales. By the time I am done this week, all I will need is to hit Sam's for my bulk purchases and we will be good for the month, Maybe longer.
My favorite meat market has not had a good sale in a while, but when they have good sales, they have REALLY good sales. Tomorrow I am picking up $19.90 worth of Boneless Skinless Chicken breast, ten pounds.
I am also picking up 10 pounds of Ground Chuck for the same 19.90, not bad. I will spend most of Saturday packaging for the freezer, and preparing meals ahead. I have this wonderful cookbook called Don't Panic, Dinner's in the Freezer, so far, every meal we have made out of there has been a hit, granted I do NOT cook things I know my family wont like either though.
I have a 20 meal plan that we rotate through, we do try new recipes occasionally as well as I have some Lazy days and make something out of a box but that is extremely rare anymore and we do go out too much too, but we are trying to curb that down to once a week.
I also have to go to the Three local grocery stores as well, this week they are having good stock up sales. By the time I am done this week, all I will need is to hit Sam's for my bulk purchases and we will be good for the month, Maybe longer.
Tuesday, November 6, 2007
What's on Your Plate?
I had a menu all planned out for this week, but for some odd reason, I don't seriously see us using ANY of it, so I am starting over.
Last night, we enjoyed Mexican Monday at one of our favorite mexican fast food places (the one who uses REAL food)
Today is Election day, we are going to enjoy a nice pot of Chili. I will be putting half of the leftovers in the freezer for a lazy day, the other half will be part of Tomorrow's dinner.
Wednesday, Taco Salad with the leftover Chili, I just use Lettuce, Doritos, and salsa.
Thursday, Baked barbecue chicken, Corn and Mashed Potatoes
Friday, Homemade Pizza
Last night, we enjoyed Mexican Monday at one of our favorite mexican fast food places (the one who uses REAL food)
Today is Election day, we are going to enjoy a nice pot of Chili. I will be putting half of the leftovers in the freezer for a lazy day, the other half will be part of Tomorrow's dinner.
Wednesday, Taco Salad with the leftover Chili, I just use Lettuce, Doritos, and salsa.
Thursday, Baked barbecue chicken, Corn and Mashed Potatoes
Friday, Homemade Pizza
Monday, November 5, 2007
Lazy or Convenient
Today Bug and I made what I am calling Bread Machine starters. I have only used my bread machine once due to the time it takes me to get all of the ingredients into the machine (I know its supposedly more convenient, but I am lazy and it takes motivation to use any tool, and lately, I lack ANY motivation to use ANYTHING)
Today I had a bit of energy, something I haven't had a lot of lately, actually I cant remember the last time I felt good before late evening. So I took advantage today. I got things done, Dishes, School prep, school sort, Bug even did school and has done extra today. Then since I was still feeling pretty okay, I decided that the bread machine saves us significantly, so I was going to make some kits so I can just Throw it together. Now, when I want to make a loaf, I put in 1cup plus 2Tbsp of Water, 1 Tbsp soft butter, and the mix, then drop in two and a half teaspoons of Yeast punch in basic, medium, and start, and 3 hours later, I have bread.
My kits (I got 5 loaves of bread out of 1 5lb bag of flour) consist of 3 cups Flour, 1 Tbsp, Powdered milk, 2Tbsp Sugar, and 1 1/2 teaspoons salt.
Today I had a bit of energy, something I haven't had a lot of lately, actually I cant remember the last time I felt good before late evening. So I took advantage today. I got things done, Dishes, School prep, school sort, Bug even did school and has done extra today. Then since I was still feeling pretty okay, I decided that the bread machine saves us significantly, so I was going to make some kits so I can just Throw it together. Now, when I want to make a loaf, I put in 1cup plus 2Tbsp of Water, 1 Tbsp soft butter, and the mix, then drop in two and a half teaspoons of Yeast punch in basic, medium, and start, and 3 hours later, I have bread.
My kits (I got 5 loaves of bread out of 1 5lb bag of flour) consist of 3 cups Flour, 1 Tbsp, Powdered milk, 2Tbsp Sugar, and 1 1/2 teaspoons salt.
Sunday, November 4, 2007
How much Time do you Have?
We have NO time, are you surprised?
Church today was about Moses, and trusting God when he gives us instructions to Leave what we are comfortable and Go where we may not be comfortable or even know where our provisions are going to come from.
Last night when I was sitting in prayer, I had been thinking about a wonderful list I had found on another blog, it was about housework and time management for Mothers, anyhow, I had been really feeling convicted about how I manage my time, especially lately with being sick.
Needless to say, I started working through the list one item at a time to sort out my priorities. I included two bible reading times in my day, but both were to read to Bug. I really don't feel that's enough, nor is it appropriate. So I started praying about time, we have no time, its all God's time. He wants ALL of us, All of our Family, all of our Time, All of our finances, he truly is Lord of All.
I realize that my prayer time is not on my schedule, not that I don't pray daily, but I never included it on my schedule. I spend the last half hour to hour before I come to bed in prayer and praise. I listen to All Worship (my favorite Satellite radio station on sky Angel) and spend that time in prayer.
I seem to pray better while listening to worship music, don't know why, but it really helps me immensely.
You can listen to my current favorite worship song Here.
Its amazing how a song can touch you so much in just moments.
Church today was about Moses, and trusting God when he gives us instructions to Leave what we are comfortable and Go where we may not be comfortable or even know where our provisions are going to come from.
Last night when I was sitting in prayer, I had been thinking about a wonderful list I had found on another blog, it was about housework and time management for Mothers, anyhow, I had been really feeling convicted about how I manage my time, especially lately with being sick.
Needless to say, I started working through the list one item at a time to sort out my priorities. I included two bible reading times in my day, but both were to read to Bug. I really don't feel that's enough, nor is it appropriate. So I started praying about time, we have no time, its all God's time. He wants ALL of us, All of our Family, all of our Time, All of our finances, he truly is Lord of All.
I realize that my prayer time is not on my schedule, not that I don't pray daily, but I never included it on my schedule. I spend the last half hour to hour before I come to bed in prayer and praise. I listen to All Worship (my favorite Satellite radio station on sky Angel) and spend that time in prayer.
I seem to pray better while listening to worship music, don't know why, but it really helps me immensely.
You can listen to my current favorite worship song Here.
Its amazing how a song can touch you so much in just moments.
Thursday, November 1, 2007
God Has Not Given Us
A spirit of fear. But he has given unto us, a spirit of Love, a spirit of Power, and of strong mind.
I am not going hunting to figure out exactly where that comes from this morning, but the reality is, God is not the one who allows us to be overcome with fear, stress, or worry. That is our lack of faith as we prepare for what we are about to embark upon.
For me, its starting over with a new doc.
For you, it could be anything, life is full of new unknowns.
While they remain unknown to us, our heavenly father though, knows all, sees all, and is there to hold his children as they go through these trials and tribulations.
Only our God cares enough to do that, not a one of our friends or family care that much about us, though often they would like us to think they care that much (its impossible)
I am not going hunting to figure out exactly where that comes from this morning, but the reality is, God is not the one who allows us to be overcome with fear, stress, or worry. That is our lack of faith as we prepare for what we are about to embark upon.
For me, its starting over with a new doc.
For you, it could be anything, life is full of new unknowns.
While they remain unknown to us, our heavenly father though, knows all, sees all, and is there to hold his children as they go through these trials and tribulations.
Only our God cares enough to do that, not a one of our friends or family care that much about us, though often they would like us to think they care that much (its impossible)
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