Thursday, April 30, 2009

Thank Goodness for Packaged Curriculum

Oh MY goodness, life is KILLING me.
I am so worn out ALL the time, I average a nap a day and my headaches have not been letting up.

My leg is swollen beyond belief and I don't know what to do to fix it.

I know God has a plan, BUT I want to know what it is...I WANT TO UNDERSTAND.

I am not handling this very graciously this week.

Monday, April 27, 2009

I want to be Human again

Ok, I am tired of this, I feel whiney and crabby.

On the outside, noone can tell the raging emotions til I burst. I am extremely stressed out, I know God is in control and that he will get me through this. He gives me the strength I need one day at a time.

He gives the peace that passeth all understanding which is good because I have NO understanding left.

I am ever so grateful for a family who God put in my life that went through this before though, She has been such an inspiration to me, God gave her to me just when I needed it most.

Her daughter has Chiari and everything I have learned makes me feel less crazy, no I am not fully completely in the situation her daughter was in...but I do need to get through this in babysteps.

Sunday, April 26, 2009

Rain and Pain

And Swelling
Its rained almost all day today, My head has totally agreed that rain is BAD
My leg has agreed Rain is BAD
My balance has agreed Rain is BAD

Tomorrow is church, and I am still up waiting for my meds to kick in, this is nuts.

Friday, April 24, 2009

Presentation Day

Glad yesterday is over, I can't wait til the end of the semester I am worn out and my leg is acting up too often.

I have needed my cane for all but 2-3 steps all day and the bad pain is crazy.

Tomorrow is my Biology Exam, I am tired and ready for it to be done.

Wednesday, April 22, 2009


Well, I thought it was a good day, My leg started acting up when I was showering tonight, balance is back to being gone...I am in a lot of pain, I am going to make a flowering Tea and then hit the hay early.

Very Sore.


I slept almost all day, between head and balance it wasn't worth getting up for.
I homeschooled from the couch, I love being able to do that.

Today I feel middle of the road, balance isn't as far off today and my head is behaving somewhat, I can handle a 6 headache.

Sunday, April 19, 2009

maybe its 3 steps back

I am going to start charting better, my balance is off I fell in my kitchen today, I was trying to sit on a chair, I am tired of poor balance and dizzy spells. I am having major issues with turnin my head and my arm and leg are acting up really bad.

I think I am going to take a vicodin and do my homework then my Clonazepam, and go to bed. My head cant take this...its unbearable.

Saturday, April 18, 2009

one step forward two steps Back


Ok now that I got that out.
Its been a good few days. Thursday I felt mostly ok, Friday I felt GOOD for most of the day, a REAL treat....then BOOM, Friday evening I realized I had overdone it significantly when before 8pm I was in Massive amounts of pain.

Saturday I woke up feeling once again like I had been hit by that freight train, My God will this NEVER end?

I took two vicodin (which I had avoided the last two days) BEFORE noon, I left class early because I was not able to function at all.

I feel so awful, If I thought another Spinal Tap would help I would go back to the hospital...its THAT bad.
I didn't get enough relief to go through that again.

I will be dealing with this til June, but I now officially think its time to call the lawyer in hopes that I don't NEED to appeal.

How can I function like this?

Wednesday, April 15, 2009

Mediocre Day

I have had a fair day Mostly moderate pain in the afternoon and I have gotten lots done today.

My head is starting to bug me more and more. Its not been too horrible though. I am glad of that, I am hopin for another good nights sleep. Only 4 weeks left til School is done.
Counting down.

Sunday, April 12, 2009

Mostly Great Day

Today has been very long.

I got to go to Church this morning. I love my church and being sick last week I missed and oh man, I missed it big time.

Lauren and Faith had a bickerment (not quite a fight, but Laurens feelings got hurt)

I came home and made my last non raw meal for the next 10 days, we had a spiral sliced ham and mashed twice baked potatoes.

I have taken 3 half doses of Vicodin (it doesn't last 6 hours, so I take half doses so I can take it more often) Anyhow, usualy a half dose will last me about 3 ho(where a whole dose only lasts me 4.5 hours) So I took my first one when I started having major blind spots in my vision, my head was KILLING me, but I took my meds.

About 2 hours later, still has not kicked in, crap, Take another pill, that was an hour short of what I usually get...took over an hour to kick in, and only worked about an hour, Ok, now I am irritated...wait, wait, wait...its now been 3 hours, lets take another one, and Hope....that was 3 hours ago, I took the Klonopin to knock me out 2 hours ago and guess what I am still awake and still in pain.

Gives a new appreciation for what Christ went through on the Cross, Today was resurrection sunday...and Christ died on the cross for our sins, the ultimate sufffering, but I dont know how much suffering I can handle.

Tomorrow I see Dr. G, I hope he has ANSWERS for me, and not just lets slice and dice .

Saturday, April 11, 2009

You Tube has play lists

I have much music that I would love to own, but have not yet bought.

I have typically found them on Rhapsody (only allows 25 plays per month) or You Tube, Today I found I can actually make a play list of my favorites on You Tube, I was so happy, I now have nearly 20 songs set on a play list, and I can listen to my music before I buy my CDs, I still plan on buying Kari Jobe, Jessie Rogers, and Matt Redmond, but I have some of the others already, so I am excited to be able to listen to them until I can get them.

Friday, April 10, 2009

Good Visit with MIL

Today was my mother in laws birthday, we don't usually get along and with the way I have been feeling I was hesitant to go see her.

I am trying VERY hard though.

It was well worth it, she gave me the name of her Lawyer so I can finish filing for disability.
She showed us about a new pasta thats ZERO carb and Zero Calorie, its pure fiber, I will try it, if I like it, I will order some...when a pasta craving comes, I would love to fill it with a healthy alternative, she has Celiacs, so I know it has to be good for her to get it.

We talked alot about where she has been and where I have been, I am thinking she may have the CHiari too, her symptoms are the same as mine almost exactly, she is going to talk to her doctor tomorrow and see if she has any experience treating with Cranial Sacral therapy. I have also talked to her about whats wrong with was a really good visit, I am glad my pain meds got filled because I wouldn't have made it without pain is not very happy with not being taken care of.

TOday I have been in quite a bit of pain, I filled my vicodin this morning, I have taken only 2 caplets, but I want them to last, so I won't take more til the pain is unbearable again.

Maybe about an hour from now, when I am taking my Clonazapam, that ought to really help me sleep good.

Thursday, April 9, 2009


Well I visited opthamology today.
My vision has gone done significantly, I lost some more color vision as well.

My nerves are fine and my visual fields are stable as well.

So, now we ask, is it really the PTC or is it the Chiari?

I will learn more on Monday afternoon at Dr. Guthikondas appointment.

Wednesday, April 8, 2009

Home from Detroit

Well, lets see, we have two known diagnoses, I had them before I walked in so I knew they were there.

We had three Neurosurgical consults, don't know why I had to schedule an appointment with my neurosurgeon if I had all these consults, but I was told to, so I am going.

I also have an appointment with opthamology, my vision has been affected with this latest bout of PTC, so I have to have an eye exam to see how much and why.

My manual fields were not that great, so I have to have regular fields.YUCK.
My head is getting a wee bit better, but I have been on Morphine all day and tomorrow I am going to pick up a script of Vicodin.

I am tired now, and I will be taking my Clonazapam, and going to sleep early, hoping for about 7 hours tonight.

I will know more Tomorrow and Monday on whats going on with my brain.

Monday, April 6, 2009

Heading to DMC

We are leaving at about 11am tomorrow

A 4 hour night

Well we are rotating between 3-4 hours of sleep, I still feel like I have been run over by a freight train, this afternoon I see Dr. Butler.
I have lost 14lbs in 5 days I feel really week but I do feel hopeful and full of peace now.

I emailed my friend to thank her for calling my church and having them pray. Her husband had lifted me up at their mens prayer breakfast, and later that day I started to have peace with whatever God's will is in this.

Thursday and Friday I had no peace about it whatsoever.

So now I finally feel if I am told to go to the hospital and referred for surgery, I feel it will be the right time.

Sunday, April 5, 2009

Why Don't I feel better

Well that tap lasted not nearly long enough.
I follow up with family doc on Monday, and I am scared he is going to send me to Detroit anyhow, my pain is TOTALLY out of control, if I am sitting up or laying down, it doesn't matter.

If I cough or sneeze my right arm goes numb, I can't turn my head and I am in absolutely unbearable pain still yet.

The Clonazapam, I thought helped me sleep, now I think it was more from being up for 24 hours straight first. I got 3 hours last night, I am in the worst pain of my life and I have to make my puter screen big to see what I am typin.

Reading is challenging and the nausea and pain are just nuts.

I am starting to worry that this is more than just a ptc flare.

Friday, April 3, 2009

My Trip to Henry Ford

Last night I lost my battle to wait this out.
I gave up.
I felt like such a failure....hold it, who did I fail?
I did not fail reality, by waiting, I would have been failing myself more.

I headed up to Henry Ford after school last night. I thought it was going to be a long wait to get in since the ER waiting room was quite full.

I waited all of 5 minutes or so.

I was seen by a nurse, she took my medical history. I was in unbearable pain.
I was seen just a little bit later by the ER doc.
He walks in and says someone has a headache...well DUH. He was great though.
He got me all set for a tap almost no questions asked, then he had lots of questions.
When was your last CT, who is your Neurologist, when did you see him last, etc
The first one was hard, I don't recall, the second one was EASY Isaac Turner, the BEST Neurologist in South East Michigan. and Obviously the third was easy too, Uhm, yesterday.
He called Dr. Turner to get his blessing to do the tap. There was a miscommunication between Dr. Turner and I in his office, but he will get over it...I make my medical decisions, he just helps...I trust him alot, but the decision he was making in that case, I didn't feel comfortable with at all.
Dr. Turner did order the Spinal tap for me, with orders to bring my pressure down to 18, that reduced my pressure by half...made me a bit dizzy am still light headed and nauseas.

Up in Anesthesiology, the Dr was absolutely amazing. He got the needle in first try, used lots of anesthetic so I didn't feel any thing til he took the needle back out. Talked while draining it and he and the nurse Shawne were just great to be around, I felt a sense of

God really truly brought me on THIS day, because I needed THIS staff, the nurse who was my nurse upstairs doesn't usually work nights, but last night she worked a double shift. The doc in the ER did not question my certainty that I knew what I needed and wanted, and that it was going to be OK.
I am so glad I didn't wait.

I feel better knowing I am taking care of myself. Even if its hard.

Thursday, April 2, 2009

Not What I expected my 300th post to be about

I took my first dose of clonazepam last night.

It did what Dr. Turner Promised...I slept 4 1/2 hours thats 2 hours more than Tuesday night and 1 1/2 more than Monday.

There is absolutely no pain relief though.

Wednesday, April 1, 2009

Today has been really rough

I saw Dr. Turner this morning, He is Amazing.
Reality hits
The topamax is NOT working, so he took me off of that
The Flexeril is not working, so I only need to take that when I REALLY need it
He gave me Clonazepam to try so I can get some sleep, HOPEFULLY

He told me to make up what I remember about what I was told for restrictions based off of the headaches, its not really in reacords anyhow.

If I go to the ER, He wants me to be sure that I get a Spinal tap in the proper position (duh, sorry, that made me laugh, and it hurts to laugh) He wont order it because he knows our financial concerns, and he is willing to wait til we have medicaid otherwise...even though he doesn't want to.
He was willing to have me go to the ER in Detroit and just see residents, however, they turned me away WITH insurance...and he was furious.

THe docs he is going to recommend for after I get disability (and or insurance) don't accept medicaid, so it will have to wait til after we have medicare. I am totally stressed over waiting.