Sunday, May 24, 2009

Back on the Saddle again..or maybe it's back off..who knows

Back on the Saddle again…or maybe it’s back off…who knows

Well it was home sweet hospital again. I got to spend three glorious nights there. Rex Hospital sixth floor. I must say it’s a great place to be when your head feels like it will explode. They have these wonderful blackout shades on the windows and no one dare turns on a light when coming into your room.

And to make it even more fun. They remember me here. Even the IV team that came to put my PICCU line in did. The nurses knew me but were sad that I had to be back.

So why was I back on floor 6. My head of course. The never ending saga these days.

This bought of pain started this past Sunday and just got worse and worse. I laid in bed with my shades drawn and my medicine arsenal ready to go. I started with the small guns. Relpax..that did not touch a thing. Sighhh so its gonna be one of those.

Monday- everything hurts; even my toenails feel like they are going to explode. Because Wes is working I go ahead and call Mom so that she can pick up the girls fro school. Mom calls the Neurosurgeon to get the results of last weeks x-rays on the abdominal pain and they came back fine (of course they would, nothing is ever cut and dry) that night Mom stays until Wes gets in from flying. We call the on call Neurologist and he advises me to try Torodal injection and then to take 300mg of Seroquel because that will make me sleep and hopefully get rid of the pain. I really hope and pray this will work.

Tuesday- I wake up and my head is spinning, I am nauseous and sweating. My head feels like a gorilla is making bananas pancakes on it. Wes gets the girls to school and I go hide under the covers. But first I take a Toradol shot. These are the lovely shots that you put deep into your thigh….most of the time they work…no so much this time.

Mom calls later that afternoon and it is all I can do to carry on a conversation. She picks up the girls from school and stays. Wes is out flying on an out and back and will not be home until 2:30am, so Mom plans to spend the night. As the afternoon wears on I am still in excruciating pain so we call my Neurologist office. They want me to take another Toradal shot and then also do a sleep therapy. (Sleep Therapy is 1 Ativan, 1 Phenegran, and 1 Percocet. Night Night me.

Wednesday- The pain, the pain….I wish I was saying the plane, the plane….LOL

Enough is enough. Wes is home and he calls the Neurologist office and says what do we do. Basically we are told I need to head to the hospital for DHE IV treatments. If you have read my previous post you know what that’s all about. If not try using the back buttonJ
So we wait for Rex to call that they have a bed for me and hi ho, hi ho it’s off to Rex we go.

They get me all set up PICCU line (tons of fun and everlasting scars there), vitals, history, usual meet and great. Now its time for the meds…Thank God.

They give me Morphine shot right off and I do get some relief until the other meds get a chance to start kicking in. They gave me sleep meds that night and I did in fact sleep.

Thursday was pretty much a blur and when you are in dire pain that’s probably a good thing.

On Friday my Neurologist finally gets my Neurosurgeon to come see me (I won’t go into to much detail on that issue)

Basically he came in and pumped my shunt. He said that it pumped down good but did not re-bound quickly. This could be caused by millions of things. One could be that the shunt has shifted position in my head and the tip of it is suctioning to my head and not allowing fluid to flow correctly.

He also said that we might want to consider putting in an LP shunt. This is a shunt that is placed into your back. I would still keep the VP (one in my head) shunt.

So to determine these things he orders a lumbar puncture. AGHH I hate those thing. But at least this time they did give me an Ativan IV before having it done.

Now before I tell you the opening numbers from this LP lets go back to some basic facts

:Normal opening pressure for most people is 7-17
:My first lumbar puncture has an opening pressure of 43
: My lumbar puncture 3 weeks ago with a shunt was 21
I had my shunt adjusted down after that one to allow for more fluid to drain
:My lumbar puncture today was 25

What in the world is going on!!!!!!!! This should not be happening. My shunt should not be letting this happen.

So after taking the reading they did drain me down to 10. And by golly my head feels tons better today. That is unless I am standing up, but that’s just a low pressure headache issue that will resolve on its own.

So my Neurologist came in late this afternoon and after seeing the Lumbar Puncture results feels that the DHE IV treatment is not doing me any good and that I am really having a pressure headache. NO DUH/ He feels that the shunt is not working like it is suppose to. Wes even asked him point blank this question.

So they discharged me. And here I sit. My head is feeling so so right now, but I attribute that to them draining the fluid down today and hate knowing that it won’t be long until it regenerates.

Something has to give. I have been saying for weeks now that something is just not right. Sometimes we just know our body. Between the vomiting, nausea and the horrific headaches something is not working.

I will be calling my Neurosurgeon a call first thing Monday (it may be Tuesday since Monday is a holiday) and setting up an appointment ASAP. I want and need a plan of action.

No one ever wants more surgery but if that is what needs to happen to make me feel alive again, where do I sign up.

I want my life back.
I want to enjoy playing with my girls again.
I want to be at work and be productive.
I want to enjoy being with my husband.

I want my life back….I have already lost to much time of it

Monday, May 11, 2009

Crash and Burn

Crash and Burn

Things Crash…..It’s a fact…trust me….

Take my computer at work.

It gave me the blue screen of death right before I got sick in January and yep you guessed it…crashed.

Now they where able to retrieve most of the files but what they could not get were my Approved Vendor List. My ISO List…sigh….All 297 vendors, phone numbers, addresses, and emails wiped off the face of the earth.

We have our yearly audit in July…this list is a “must have” for the audit.

Oh boy!!!! Google is now my friend, trying to find all these damm vendors.

Nothing says Welcome back to work like this!!!

Other things that crash and burn are apprantlely my six year old.

She has a Razor scooter and goes to the neighbors driveway (it has a hill to it) and goes barreling down at record speed.

You can see where this is going, no doubt….

Today, while Mom has them at my house- Sorry Mom!!!

She bites the dust!!!!!

Mom goes running, A.T. and Susan (our neighbor and his daughter) go running.

She is scrapped up. She landed on her side. Her nose, arms and legs have “boo boos”

Poor Piper

About the time I got home from work Mom is bandaging her up and she still has tears rolling down her face.

But given that she is a child, I give her two weeks and she will be tearing it up on the scooter again!!!

On the IIH front…

My vision did clear up…thank God.

My side has continued to hurt, increasingly so. So I did call the Neurosurgeon’s office today…Sigh. I really did not want to, but I did. I have an appointment to see him on Wednesday. I am really hoping the pain stops before then and that I can cancel that appointment.

I have had this pain in my side before and have been told that it is probably just the tube in a “funny place” because it has not had time to adhere to scar tissue yet and stay in one place. In those previous times, I have been able to massage my side and the pain would go away. This time, it is not working that way. It is a constant ache even when sitting still and when I move it is a stabbing pain that at times takes my breath away.

So I am really hoping it just goes away and this is nothing to be concerned about.

Crash and Burn is how life can be sometimes but it is how we choose to deal with the aftermath that determines our fate.

We can hang our head down in despair and continue to burn or we can fight. Fight for life. Fight for what we want, need and love. We decide those things. We control how we handle what life gives us. We can either embrace it, or drown in it. The outcome may not be what we want, but we sure can give it one hell of a fight! Never give up!

Sunday, May 10, 2009

As Good as It Gets

What if this is as good as it will ever be?
As good as it gets?

It’s been a wild ride since January.
It’s been scary.
It’s been sad.
It’s been me.

Before this all happened I never knew that Intracranial Hypertension existed. I never knew that my head could hurt so much on a daily basis. I never knew the love that my family truly had for me.

I never knew.

This past week I went back to work, or attempted to go back to work.
It was not a pretty site.

For starters, I know that Fluorescent lights are a migraine trigger for me and guess what I have in my office..yep, one hella big flouresant light shining over my desk.

So smart me, cuts them on and the result……sick, sick, sick….my head felt like a time bomb after 4 hours. I came home took a Relplax. Wes and I went to Lowe’s to get lamps for my office. By the time we got back to the house I was sweating and nauseous and could not get any relief. I now have inject able Toradal and that is what I had to do. Pull the syringe out, get the meds and stick my thigh. Night, Night….. The only good part is, within 10 minutes I had relief. The bad part, I was out like a light.

Sigh…..I try again

Thursday came and I managed to work 5 hours. Yea Me!!! It actually felt good to be at work. It felt good to be productive again.

I came home, made dinner, and went to a school program.

By the middle of the night IH/migraine was in full force again…. Leading to a no work day for me…Not good. Not what I wanted.

But you think that’s it…no way….my little black cloud came for a visit..

Wes took the girls to school in my car and came back and got in his car to go to the dry cleaners and nada, nothing, zip….the damm car would not start.

Long story short and $$$$$$$$$$ later..the car is fixed.

Ahhh, the little black cloud. Really it’s time for him to find a new home, don’t ya think?

But here we are…another day had passed.

The girls are sound asleep in their beds.

Wes is flying.

My peripheral vision in my right eye has been gone since 4 p.m.

My right abdominal side has been hurting for days, increasingly so.

The whooshing in my ears is back, after being gone for about four days.

My head hurts, it tingles, it itches, it just plain hurts…..

What if this is as good as it gets? I have to ask myself that. I have to be prepared for it.

Sunday, May 3, 2009

A Happy Place..A Laughing Place...

A Happy Place…. A laughing Place

There are places in time that we laugh and smile. There are places in time that we remember and laugh. These are our happy places. When things are bad in our current life we go back to our “happy place” to get us through.

I find myself doing that a lot these days. Rembering those happy places and times. Rembering the laughter and smiles that go with that. Wishing that I could recreate those moments.

But I know that I cannot. I know that I have to make new happy memories.

Why does that seem so daunting at the moment?
So unrealistic?

You tell me?

Because to be very honest I have I hard time these days finding anything worth laughter.

A constant headache is not worth laughter…..

Yes, my two beautiful girls fill every day with joy and wonder but it has become so hard….so very hard to enjoy…

I dare not give up... oh no.. no defeat for me…. But this has become so hard….so very hard.

I put on the happy face that everyone needs and wants to see….

They need to see a not hurting me..
A not in pain me
A living life me

What they do not see,,,,
Is the daily agony just to get out of bed
the pain the sun brings to my eyes
the pain it feels to wash my head
the pain it feels to dry my hair
the pain it feels to smile
the pain it feels to even care at this point….

What they do not see is what I try to hide, and that is what gets us all by.
That is what gets us all to another day. Another day of hope and promise.

IH has taken so much out of me that I cannot even begin to describe.
I never imagined life like this, I never knew it could even happen.

To sit here and wallow in the despair would be easy to do. Very easy to do.

I am trying very hard not to do that. Some days are better than others.

I am going to attempt to try and go back to work and to be honest it scares the shit out of me!!!! Not because I don’t think I can do the job, because I know I can , but because the IH is not under control at the moment. My head hurts all the time, my ears ring all the time, my eyes are constantly playing ‘games” with me.

I hurt….I hurt….I hurt….

There I have said it…

I am in pain.

It never stops.

It never goes away.

Yet, I need to make a happy place, a laughing place again.