Tomorrow is the Big day

Ok this is a multi faceted post
I am THRILLED I dot have to wait any longer for my appointment, My head has thoroughally gotten the better of me.
I have felt aweful all day.
The only think keeping me home is that I know I go in tomorrow to Dr. Turner.

I also found a PTC support group the other day on Daily Strength, Its been great.
I needed it Oh how I have needed it...I May not feel better, but at least I dont feel so alone anymore.

count down

Ok, I nearly made a pitstop on the way home from school tonight, make it 7 near trips to er, I can NOT deal with this anymore.

Pain on 1-10 is not fair, 25? higher?

Every day it seems like Wednesday is further and further away.
Watch I will feel good on Wednesday morning when I go in...just watch.

Ok, Its gonna be a rough go

I am counting down til Wednesday.

I see Dr. Turner Wednesday morning, and I am so tired of feeling like crap, I actually feel worse this month than I did last time I saw him, it keeps getting worse, I am ready for a trip to the ER, and I haven't been there in a year.

I am totally overwhelmed, I just want a break.

I need a pain vacation.

Still sick

Ok, I am getting so tired of this.
I am ready to go to the emergency room, I will talk to Dr. Turner next week, this makes 6 times in 5 weeks I have contemplated a trip in and I have 5 days to go, AHHH!!!

I am so stressed out its not even funny.

Rain makes me miserable

And today is a rainy day.
I slept til 10am, got up and my head is just throbbing, I hurt all the way down my right side, we wont mention that my left leg is hurting too.

I am working on my business paper too, its driving me insane, I cant think straight, because thinking hurts. breathing hurts, I see Dr. Turner in ONE week, and I have to let him know that I have contemplated a trip to the ER on at least 4 occasions in the last 5 weeks, thats too often.

I am praying for the disability to go through soon. I am so tired of being in constnat pain. Praying CHris gets a job with good insurance if I get full disability because unless I get a VP shunt, and the Chiari fixed 2 good days a week is not enough to carry a full time job.

Next Neuro App scheduled

The queen of procrastination has scheduled her next appointment.
I had been having issues with not wanting to schedule it, fear is a great motivator lately, pain has been really bad and I know I need another tap.

I called the office this morning, my appointment is April 1st at 8:20am I am trying to not be nervous, I liked him last time but I dont know if I want the higher dose of Topamax either, the last round made me so sick, I spend 10 days down.

I am just getting tired of this mess its been too long now.
I have been having worse headaches than usual and am always tired too, I will be asking for anti nausea meds too, something I have never asked for since I have been sick in a long time.

feeling somewhat optimistic

Someone with PTC was approved for disability this week.

I survived

The appointment this morning took almost 2 hours, I left hurting so bad, from sitting so long, half of my problem is that I can't sit that long, and moving to start over felt good, but I had to go sit again I actually had an hour long appointment and a 45 minute long appointment, oh did I hurt.

Now its time to pray but I am not even sure how to pray anymore.

On one hand, if they declare me disabled before September of 2008 I will get significantly more money, but wont qualify for SSI which means no insurance. THAT DOES NOT HELP me get better.
On the Other hand, If I am disabled AFTER September 2008, I will only be qualified for SSI, which gives medicaid, but less money.

Since I left my job back in 2003 because I was sick all the time and being a mom was more important than trying to fight it, I don't know what will happen. I am trying to get training so it looks good, but now its a waiting game.

If I qualify for disability on the PTC, which is what is getting the better of me RIGHT NOW, even more than my leg has been....its what wakes me up, its whats making me sick all the time, and its what at least one of my meds is treating... or trying to treat, anyhow. Its whats limiting my ability, and its whats giving me my vivid dreams again. Maybe another post, we shall see, maybe. Anyhow...THat has been ongoing since 1998 with ONE remission, but several times with lack of treatment because I learned to live with it...or was stubborn and scared...but it has been being treated and monitored thoroughally for going on two years now, I can't afford to NOT take care of it for Lauren's sake.

If I get it based on that I will need Chris to get a GOOD job with insurance, because we will not qualify for medicaid at all. We will likely lose all of our assistance. In the end it will work out ok, but the wait will be really rough.

At this rate, I feel like I let my family down. I have never gotten to this point, I have always taken care of them and this was REALLY hard for me, now I wait, we will likely have a psych eval and many other appointments, I will work through it and try not to put cover it, Its very hard for me, I am used to bein strong for my family and right now I feel so vulnerable.

Stressed Out

I was up late last night, My heart was aching, my head was aching, my back pain is spreading, it is crawling both up and down, it has made it up past my bra and the low back has been in constant pain especially when I breathe.

I found a Caring Bridge page last night for a lady who has PTC, it made me cry since she has had so many shunt procedures, many less spinal taps than I have and much lower pressure, and very little visual damage. I am so happy she has been through so little but at the same time I am so frustrated because my docs refuse to do anything until I lose my vision so I suffer constantly, it was a very hard read, I have learned to live with this for so long.

I am quite grateful that I gave up on pain medications when they quit working since I am afraid that the amount of pain I would be in would be significantly greater if I was on them, my drug tolerance is so high anyhow. Tomorrow I go for my SSI Appointment they called this morning to remind me, I can't believe how real it is, I JUST want the insurance, I NEED a spinal tap so bad its not funny.

I have been researching the gastric bypass stuff, and honestly I doubt I would even be able to have one since the hospital that the neurosurgeon wants me to have it at does not do them on people who have had a heart attack, so when they overdosed me on the dilaudid, they may have cost me that opportunity too....I will have to play a nice long waiting game and see.

I am scared, emotionally, a wreck and not sleeping well anymore. I would hate to think I may qualify for the SSI on my sleep apnea based off of the mental case, that is quite neve wracking, but whatever it takes. Lauren is taking a break from school for a moment before she starts her phonics lesson, I can't believe she actually finished her math on time, she had to do two lessons today because we got grocery shopping done yesterday morning while I was feeling pretty good, we don't waste time when I am feeling good since we never know when it will happen again anymore.

Touch of the Masters Hand

Well it was battered and scared,
And the auctioneer felt it was hardly worth his while,
To waste much time on the old violin but he held it up with a smile,
Well it sure aint much but its all we got left I guess we aught to sell it to,
Oh, now wholl start the bid on this old violin?
Just one more and well be through.

And then he cried one give me one dollar,
Wholl make it two only two dollars wholl make it three,
Three dollars twice now thats a good price,
Now whos gonna bid for me?
Raise up your hand now dont wait any longer the auctions about to end,
Whos got four Just one dollar more to bid on this old violin?

Well the air was hot and the people stood around as the sun was setting low,
From the back of the crowd a gray haired man,
Came forward and picked up the bow,
He wiped the dust from the old violin then he tightened up the strings,
Then he played out a melody pure and sweet, sweeter than the Angels sing,
And then the music stopped and the auctioneer,
With a voice that was quiet and low he said now what am I bid,
For this old violin and he held it up with a bow.

And then he cried out one give me one thousand,
Wholl make it two only two thousand wholl make it three,
Three thousand twice you know thats a good price,
Common whos gonna to bid for me?
And the people cried out what made the change we dont understand,
Then the auctioneer stopped and he said with a smile,
It was the touch of the Masters hand.

You know threes many a man with his life out of tune,
Battered and scared with sin and hes auctioned cheap,
To a thankless world much like that old violin,
Oh, but then the Master comes,
And that old foolish crowd they never understand

Song lyrics Wayne Watson, Best song written when we don't understand WHY?

So Much on My mind

Oh I don't even know where to start today.
Its been interesting,
We went shopping, God blessed us with all sorts of really good deals.
I love being frugal and having it work out where we would have literally spend nearly twice as much.

Lauren ACTUALLY behaved today.

I have been on the 200mgs of Topamax a day for 2 weeks now, and officially can say I DO NOT LIKE the higher dose, my headaches got worse, my pain in my leg decreased, my nausea, tinnitis, intestinal issues, and dizziness all increased, and now I can't focus on anything, I am tired all the time but I have trouble sleeping.

Uhm, We have to work on Laurens Pinewood Derby Car tomorrow, no weights for her, its all about participation, long story short, we ran out of time to get it to Mr. Steve to get it weighted before next Friday.

I have to work on my paper for Business Communication, not to hard seeing as I have my work online already just have to print it off and type it up.

I have my interview for disability on Wednesday, I am praying really hard that that goes smoothly since we have 10 YEARS of this mess. I hope they take it all into concideration and do not deny it automatically.

I am drained, physically, mentally, emotionally, financially.
Spiritually, though, I know God is working, somehow, somewhere, God is working his hand in this...what appears to be a disorganized mess is a well organized planned orchestrated event, and he knows exactly what he is doing.

My Defective Brain HELPED Me

For once I am totally GRATEFUL for my not so healthy brain.

Ok, I was totally terrified when I was diagnosed with PTC back in 1998, the thought of having to see a neurologist for the rest of my life scared me to death, and the opthalmologist scared me even more since I saw all the blind people on my first visit, and to be honest, I quit going at least twice.

Then I learned all I could because being sick stunk, I got my shunt put in and I went into a shunt induced remission, HEAVEN, Til it failed and I was right back where I started, staring at all those charts of brains and eyeballs made my head spin, I knew them inside out. Those models in the offices could not possibly be parts of my body.

Or could they? Hmm...I wanted to go into nursing til my nerve decided it was going to quit working PERIOD.
SO I decided Medical Assisting, I could be up and down and it gives me my medical environment. It still required Anatomy and Physiology (or a generic equivalent) I chose to take the AP class in case I wanted more later....Ahh, that first test was MURDER Muscles and bones, bones werent bad, but muscles and the skull were just too much...
this time
THE Brain, Ear, and Eye, Hey, I know this stuff. Mine does not work quite right, or at least some of it has been fixed, lets see the optic nerve is here, the cerebellum is here Oh look thats where those cereberllar tonsills are SUPPOSED TO BE (Chiari malformation) Look, Thats where all that extra spinal fluid is made (the choroid plexus) Identifying the ventricle was actually fun to me, It all made sense. It actually scared me a little how much I understood because I could explain it to my classmates medically to help them understand it but hey, I understood it and when it came to the lab practical, I got an 88, which for someone who does not test well is really good, I did not do as well on the lecture, but I was within 10% of my classmates which made me happy.

And for my fellow PTC patients Guess what we discussed in class today, the blood and of all things Carbonic Anhydrase, and what are Diamox and Topamax, but Carbonic Anhydrase Inhibitors, so I am actually going to learn how our meds work and what they are supposed to do...I say supposed to do since my pressure has not gone down, my headaches are still horrid, the diamox NEVER worked and the 200mgs daily of topamax is just helping with the nerve pain in my leg it has not touched the pressure, I can feel it daily and my eyes and ears water to tell me its high, so we shall see when I get my tap, it wont be too long now. My docs are finally helping me.
Now that I finally have a doc that is much better, I did some homework on him the other day, I have a friend that may know him from residency rotation too, Dr. Turner graduated from University of Maryland Medical School in 2002 and Josh graduated from Wayne State University Medical School in 2002, so they would have both been on staff doing residency at Childrens at the same time because I know Josh did a Pediatric Neurology rotation... Hmmm Maybe thats why my brain hurts, I think too much, anyhow my new neurologist is my age, and maybe thats why he cares more, its easier to see a patient who is significanly different in age as just someone else, but when its closer to home it brings it more to life, it could happen to your family, thats why younger docs tend to be more compassionate as of late....just my observation.

Why I am Glad we Homeschool

It has been a very rough year for my family, between me being very sick for over a year, my husband losing his job, and us moving...our lives have been turned upside down.

Lauren is currently working at a 1st grade level in all but reading, there she is reading at almost a 4th grade level, her comprehension is remarkable.

If we had put her in school when we were pushed to, I am afraid she would have missed a lot of time, I could have never gotten her to the bus or to the school when I was so sick, Chris had to be to work way before our public schools started and I could barely get out of the house to get to doctors appointments.

Now when I was all dopey, we did school on my bed, she climbed up and we did our lessons right there, she never got behind and things kept going. When we moved, she did not get behind, when we got all the obnoxious snow this year she did not get snow days, or it was converted into school lessons, she learned about its formation and about the weather patterns.

I would not trade homeschooling. Even when I get better, we will still homeschool, we all find it much better to take the time to teach her at home she is learning far more than she would and we are happier with this choice.

its back

headache back full force leg pain joined it today, no clue why.

Meds are finally kicking in

The higher dose of topamax is FINALLY kicking in.
It is not penetrating the headache, but it is helping with the leg pain a bit. I was researching how it works and I discovered that it shuts the pain signals off.
I learned that and also noticed it when I missed a driveway on my way out today. Uhm, Oops.
We shall see the headache is about a 10 average, but I am getting used to that, it seems that its what it normally is though. I rarely get lower than that and when I do it goes no lower than an 8 or 9 anymore. It spiked after they took the shunt out and I have only had a few good days since.

Ministry?

How do you know if you are called into the ministry?
One of the biggest clues to knowing is if your calling is correct is if when you pray for someone and the prayers actually match their needs.

I got a strange message from someone this week. They feel called into ministry, yet time after time I see something totally different.
I have been a Christian for more than half my life, I have worked in ministry, been active in many many ministries, and never once had someone tell me that what I prayed for them was inaccurate towards their circumstances.

We have been having a lot of struggles recently but God has continued to bless our family, anyone who has read my blog can see that, He has been my strength time and again. This week was very very rough for me, but yesterday I saw a bright spot and shared the positive....I thought it was a good thing to do since this "friend" has been struggling in her own life.

Well, she comes back to me in a text that she sees a dark cloud over my life and that I cant see the silver lining and cant see Gods blessings, HUH? Say what? I have been sharing with her how God has been my strenght and provisions all along, I have shared with people even in the hospital how he has been the only reason I've been able to stay hopeful.
Say WHAT?
Ok, I lost it, I did write back but How can you go into ministry and be so off? She has written me many times in deep despair about how she is struggling to trust God in her problems? is she seeing her and translating to me? I don't know, but this is not referring to me.
I know God is in control, our financial situation brought me a close friend in church, my health situation has been a testimony to many people over many years.
God has always used it...I am not afraid of the next steps, as he has directed this for almost 20 years now, what is there to be afraid of.

God is in control...I am not, nor would I want to be. I would mess things up, I like things to be in order, his order is perfect, mine is not necessarily perfect in his way. I am confident that whatever happens will happen for the reasons he has guided.

As someone going into the ministry, I would hope that people would thoroughally pray and make sure that they are sure that they are in the whole will of God when they speak to someone else, making sure that what they are saying is for that person. I know I am in no way what that was for this is not the first time someone has done this to me. As a matter of fact someone out of the will of God just like that drove me out of church many years ago questioning my faith because I trusted God to go through my first surgery with my PTC...Hmm, God was in control then, used me right there in the hospital to witness to the nurse who needed to be brought back to him...I don't think it was a coincidence that he kept me overnight, he needed me to speak to THAT nurse...no I didn't push God, I just said that I wasn't afraid that God was going to make everything ok, and she asked how I knew, and I answered. When I was in the hospital last February each different floor had a purpose, an aide wanted to know why I was crying, I was singing praise songs because I was praying I was so stressed out, I was singing Matt Redmonds song You Never Let Go, She understood the maker and we talked for almost an hour about how great God really is, even in a hospital room after a heart attack I was more than happy to share Gods love.
He is amazing anywhere.

How much sleep does one person need?

I guess I should not ask how much sleep does one need, lest one thinks I am depressed.

I am far from depressed, miserable is more like it.

I am definitely experiencing some of the side effects of the higher dose of Topamax, for one I have had the worst headaches in the world since last Saturday,

I can feel my pressure is higher than usual, which is either Chiari related (I am guessing that because the rain came yesterday, and atmospheric pressures trigger Chiari headaches) or PTC headaches either way its definitely pressure because my eyes and ears are draining and have been for a week now.

My CPAP pressure was raised last Friday and the headaches kicked in Saturday afternoon, by Sunday I was feeling awful, and Patti could see it, but she always can tell, she is good like that.

Sunday afternoon I filled the Topamax and took the first 100mg tablet, because the headaches were so bad I figured the higher dose might help kill the darn thing faster, boy was I wrong, here it is 7 full days later, I missed church today because I was SO sick, yesterday I was sent home from class by my instructor because you could see how miserable I was.


I go in on the 18th of March for my SSI interview.

I am hoping for immediate Medicaid so I can get a spinal tap scheduled ASAP.

So far I have taken 6 naps in 3 days plus nighttime sleeping. I am still tired and it hurts to hold my head up.

I have not felt this weak since Lauren was born.

saw new doc

digging up old records
pain 10+
waitin on next step

extremely discouraged

yesterday and today I had some bleeding issues I bleed for 15 minutes from a scab and I called the rehab doc, scared me to death. then today I had the same thing happen from a different one for 10 minutes.

My headaches have been totally out of control for the last 4 days, I feel so aweful, I don't know if its from the change in the cpap pressure, or the upped dose of topamax, but its just getting the better of me.

Chris says he hasnt seen me this sick since 2001 when I had the shunt put IN. I know my pressure is UP and I feel totally awful. I am getting to the point of going to the er, and I don't want to. I don't know how much more I can take. Today even the pillows hurt my head.

CPAP Stinks

Ok, it doesn't stink, this new pressure does, and if I don't adjust soon, I am calling and they are going to have to adjust it again, 17 it very high, and its hard to breath, my headaches have been much worse at the higher pressure and I am not sure if its due to the pressure of the machine, the stress level of disability process, or the fact that its just plain getting to be about the time for another spinal tap.

I am praying I don't need to seek an attorney (I already have one) to get the disability, I am sick and tired of not feeling good and I just need a break.

Tonight I start the higher dose of Topamax, I am so nervous, I have read so much about side effects and I had nasty side effects on diamox to the point of having to be taken back off right away (less than 2 months) but if it helps the headaches, I am almost willing to endure side effects to not feel like death warmed over daily.