No matter what may come my way

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.

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.

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.

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

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?

• 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.

The list can go on and on, but I am just thankful that God is our provider and he cares for each of us as his own, since that kinda sums it all up.

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.

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.

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.

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.

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

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.

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.

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)

No News is Good News

But, when you get news from a doctors office, its generally NOT good news.

Sunday mornings are not the days I ever would have expected to hear from the doctors office, but that's the time they called. My follow up has been changed, its not appearing to be my shunt after all. OK, I realize that may sound like Good news, but in reality its not.

I suffered for 111 months for them to find an original diagnosis. Granted, I continued to live my life, graduated High school, went to college, worked, made friends....some that last a lifetime...But, I was in pain of varying intensities the whole time. In 1998 that wise PA helped me immensely. A diagnosis meant a treatment that would at least ease the pain a bit.

1999 brought the optic nerve sheath fenestration, 2000 brought me another week in the hospital as did 2001 The shunt was the first long lasting relief. So finding out that that's not the problem means we get to see what exactly the problem happens to be. I get to start anew with a new Neurologist, and who knows what will come. My faith in doctors has always been a bit shaky. After all, they are only human, and don't comprehend everything about all problems.

My easy fix has become complicated and I don't even know how complicated it will be.
Will keep ya posted.

Biblical helps for Obedience

After a really rough start to our week, we read the Keys for Kids, I love their topical index on obedience, first we read the Bird Cage, then looked up several supporting stories.
Then we read Kids for Truth about Jesus being our advocate and learning how Christ is the ONLY way we can be forgiven for our sins.

We also covered the wonderful dynamation of the Dyna Box on Kids for Truth. The lessons made quite the impact. Bug truly wants to be good now and has been much better lately as well.

The Battles that Noone Win

Today Bug is back to herself alright, 100% normal, OBSTINATE, Ornery, Crabby, whiny, you name it she is being awful, or at least she was.

Days like today make me wonder how any mom can parent a child with any type of disability be it learning, mental, or Physical.
She really wore me out.
Tantrum after tantrum after tantrum. She is smart, she knows what she is doing but every little thing seems to bother her and set her off.
She can not, or will not sit still for even a moment.
The work is too hard (its Kindergarten work Lesson 35, she has been working the book since....JUNE or so and has only gotten 34 lessons done.)
There is too much work, its just too much to get done (its 2 work sheets and two reading sheets)

Ok now we are talking a child who is reading at 2nd grade level most of the time. Who is quite capable of doing 1st grade math and phonics, her writing, yes, that is a true struggle for her but everything else she was asked to do is well within her abilities with very little actual challenge.

How do I know its not challenging for her? When we went over it, making sure she understood the instructions, she did EVERY single Math problem without even thinking about it.
She can write every single letter of the alphabet without a challenge, but doing it for work....well it was Just too hard, and took 45 minutes to write 12 Capital letter A's and 12 small letter a's
of those 24 letters, 8 of them were Traced.

She had a meltdown about an hour and a half ago now, which she promptly FELL ASLEEP after.
The math sheet sits on the clipboard colored (not in the right places because that's a silly way to add) but none of the work is done.

The stress of dealing with her does not help me at all. I am just too tired and would so love to just take a break from my life at this moment...However, that's just not possible.

How Glad I am.

Yesterday Bug was back to feeling better and today, I could not have been more thrilled. Today was one of the worst days I have had with my PTC in over 15 years. I can not even compare the pain today of those days back when I was diagnosed and could not even walk in a straight line.

I think I have just been spoiled rotten by the pain free years my shunt did give me.
You know its bad when I go buy Advil (and I know its not strong enough to do anything more than dull the pain a little)

I read a blog and one day she described a migraine, my first thought was how awesome of a job she did sitting in my body. Unfortunately, the difference between a Migraine and a PTC headache is that PTC headaches do not tend to get better with time.

Why oh why did I procrastinate so in taking care of this. My dear friend in Idaho mentioned that I had been speaking of it for over a year...she tried to get me to listen to myself, but I was too stubborn.
When I looked at it on paper filling out the paperwork to go to the neurosurgeon, it actually scared me. Shunt Failure usually occurs within the first 4 years, I guess my problems started back then, but I was too stubborn to notice. The headaches have actually been here for nearly 4 years....I pawned the earliest signs off as stress due to the infertility. The more regular and noticeable headaches arrived more than 18 months ago and closer to two years than that. That puts the first signs at 2 years after placement the consistent ones at the 4 year mark, and constant headaches began almost to the day on the 6 year anniversary. My was I foolish.

I am so grateful to serve a graceful God who wont look at my stubborn streak and say....hey, you brought this upon yourself, like we as parents tend to say when our children make obvious mistakes in judgement.

10 days til Follow up.

All Better

I love short lived sicknesses. Yesterday is over, Today is a new day and all is well. Bugs fever broke and she is feeling fine this morning.

My Baby does Not feel well

Today has been the worlds LONGEST day, Bug is not feeling well. She woke up at 4am thinking she was going to vomit, she did not but she was certainly not feeling herself.

How do you prove a little one who is not vomiting is not feeling well? This child is normally SOOOOOO active, lol. She reminds me a bit of the energizer bunny, going and going and going. Today, she did NOT go.

At 4am, she woke us up, we got her calmed down, gave her a quarter dose of pepto to help with the upset tummy. She went back to sleep, very restlessly but to sleep nonetheless. Then at 5:30am, she woke up to tell daddy bye gave him a hug, and went back to sleep.

By 7am, she was sleeping in my bed cuddled up to me til about 9am when I got up and did some stuff around here.

She woke up and watched some tv but fell back in and out of sleep til 1:30pm, at which time she chose to come lay on the couch she had a bowl of oatmeal and by 5p, was back out again. Hopefully tomorrow she will wake up feeling refreshed and be back to her normal over energetic self.

God is my Strength

Well as I posted on Tuesday, my tests were yesterday.
It was a very long day, results wont be in til next week. I am not too concerned about them saying anything different than what I expect.

My mom watched Bug in the waiting room, and of course, because it was NOT me with her, she actually behaved. Gotta love kids.

We got to the hospital at about 11:30 or so, which was a good thing because we spent a LOT of time waiting, first for registration (only about 10 minutes) Then for the MRI, which was 45 minutes LATE then for the CT scan, which I waited longer than the test took, then the X-Rays, which took longer than the CT, MRI and all the waiting put together. I was totally baffled that a few x-rays could be so agitating.
A spinal tap would have given clearer answers faster.

I have always said though that God works through the tests and the doctors appointments and just overall has been working through the PTC ever since before we even knew what it was, he did it again.
This time, it was a conversation between the X-Ray tech and I, which I suppose is why the X-Rays took so long, God had a testimony to be shared, and that even included the part about the suffering now not being half as bad as before.
He had asked the innocent question of why I had a shunt, easy question. Turns out his wife has the same symptoms due to another condition, her neurologist REFUSES to refer her to a Neurosurgeon because he doesn't think they would be willing to even think about putting a shunt in because she has some fluid flow (I had SOME fluid flow, just not enough to keep the pressure down) So I got to share my docs info, the fact that even with a potential failure, we did have 4 full pain free years and its not nearly as bad as it got before (the headaches become debilitating if your pressures get too high, which I cant do now with the BUG)
So God is allowing me to go through this because he wants others to benefit. It definitely makes the suffering a lot easier.