When Life Hands You Lemons

When Life Hands You Lemons…..


Make Lemonade????

I really hate that saying….because unless you have sugar it’s going to taste really bitter.


But life is like that sometimes, bittersweet.

Graduation was bittersweet.

Divorce was bittersweet.

Being single was bittersweet.

Watching the girls grow older and more independent is bittersweet……

But Life is all about change and dealing with change.

Whether we like it or not the one constant in life is change……

I had to have my hair cut, it was inevitable. I was missing a three inch section of hair. It was noticeable to say the least. My wonderful mother drove me to the salon and sat in the other room just to be there as support. Hair is the least of my problems these days. I have a record long list of more important things to worry about but for the time being this was something I could control, I could decide, I could have a say in.

It seems so vain to be worried about hair….but a haircut and a hairstyle is a personal thing…It’s a reflection of personality, of spirit, of who we are.

I have always been the girl with long hair….always…..so with IH not only has it taken away months of my life that I can never get back, hospital stays, medical bills, missed ballgames, laughter….it has taken away my long hair…..my long hair that was a huge part of me….

It may be vain….

It may be silly…

It’s a small thing on a list of huge things….but I could tackle that one today…..

Change is bittersweet….

We like the comfort of what we know, we like the routine, we like to know what’s around the corner….

But maybe just maybe….we need to be handed more lemons in our life’s and find ways to make more than just lemonade.

The Microwave....Run for Your Lives......

The Microwave…Run for your lives….


There is an appliance in my kitchen that has me scared.

It is out to get me.

I can’t go near it.

I think it knows it….. hehehe

No, now don’t panic my friends, I have not lost it and don’t need a one way ticket to the funny farm, but hey ya never know.

I was told by the Neurosurgeon not to use the Microwave, not to be near it.

Say what???? Are you serious???

Side note…
(Shunts are adjusted by magnets)


Now let me just say that I know if I go and have an MRI, I can but have to go and have my shunt reset because after all an MRI uses strong magnets and therefore can reset my shunt.


But a microwave?????

I really need to ask more questions about this.

Does this mean don’t stick your head in it and turn in on….well duh???

Or does it simply mean don’t stand in front of it when it is on?

Not sure?

For now the kids are having a blast while I stand back wondering what the “safe” distance between me and the evil microwave is…..

What I will not do...

Today is such a nice day outside.

The girls are really enjoying it.
They have been on their bikes, playing basketball, soccer, on the tire swing, the swing set and even in the tree house.

I sit and watch....my head hurts...it always hurts...

I will not let them know how bad it hurts...I will not

I made them lunch...

I sit and watch them eat and listen to their rambling about the day, the week and everything in between. Its so easy just to sit and listen sometimes.

Sydney ask me what Doctors appointments I have this week...

A nine year old should not be asking those questions..

I will not have any more appointments that do not happen during school hours....

I will not....

I will not disrupt their everyday life.....I will not...

I will not let IH define who I am.
I will not let IH confine me anymore
I will not, I will not....

My head really hurts today, but I sit in the sunshine and watch those two beautiful girls playing outside and know how lucky I really am.

I'm thinking...Arby's

I’m thinking Arby’s


They have the strangest Kid’s meals I have ever seen….

Seriously…


Wes and I took the girls there last night and Piper got her usual Chicken something kid’s meal. The so called “toy” was a “You Gotta Be Kidding! The crazy game of would you rather”

Sounds fun right! Sure maybe for 9 and up but what’s the average age of kids that get kids meals…see my point…

Wes and I had a huge laugh after reading some of these, so I thought I would share some of the would you rathers..

Would you rather….
Wake up tomorrow with a jack-o-lantern for a head
Or
With tree limbs for arms and legs

Would you rather….
Be stranded in the middle of the desert with a small bottle of water
Or
With a black umbrella

Would you rather….
Have the ability to erase memories from your own mind
Or
Have the ability to erase memories from someone else’s mind?



On the IH front...
I have an eye appointment in Wilmington next week....what fun
I go back to the NS on Monday to have the shunt turned down....they are also working on a referral for the Duke Headache Clinic.

Yes, this Carolina Tarheel family will set foot in Duke if it will benefit me...LOL

Great Expectations

Great Expectations…


Ever plan to go see a movie because the previews looked soooo good , get all hyped up, go see it and come out of the movie theater going “What the ???? , that was horrible”


Ever go out to eat and see something on the menu that looked like it would be the most amazing meal of your life only that when you order it, it’s only so-so and you can’t find much good to say about it but can’t find much bad to say about it either.


These are what we as people build up as Great Expectations. This is what I did with my appointment in Florida at the Cleveland Clinic. I had Great Expectations. I just knew, just knew that this was the be all end all of where I needed to be when it came to IH.

I was wrong.

I did not post yesterday because well, frankly you would not have wanted a rambling mess and to be honest I was not sure how I really felt about the appointment yet.

So I had some time to talk with Wes, and we talked about the appointment and I did realize that yes some good did come out of it. My Great Expectation however, were just not met.

In a nutshell…

They put me on Diamox and back on Topamax
This could still be Migraine related as well as IH
I have to “learn” how to deal with the possibility of having a headache everyday
He agrees with the diagnosis of IH


Whoaaaa What was that?… yep you read that right. I may have to learn how to deal with a headache everyday. Ummmm, that is not what I wanted to hear. Now I could learn how to deal with eating a Twix bar every 20 minutes but a headache everyday…that’s a little much.

Of course there is more of the appointment but hey this is a blog and I am only going to share and bore you with so much…..

Overall….He was a nice Doctor, he had some new perspective, he had some new avenues for us to follow.

Going back ….no


Great Expectations….we all have them. We take an idea, a place, a person, or a thing and build it up so big in our minds . We make this “thing” so perfect, so wonderful that in reality that “thing” can never be that….well…..great.

Great Expectations…that’s what I had for the Cleveland Clinic….

Now I leave Florida and head home. Not dragging my head in despair, not crying or saying that was a waste of time…But with my Great Expectations in check….and ready to place them somewhere else.

Disney-Doctors-Cruise Ships?? One of these things is not like the other!

Where's Waldo?

Don't you love those books? Piper does, but at the same time you can see the look on her face that the concept of a book dedicated to finding a funny guy in a hat is strange...Oh well, that's entertainment sometimes.

We wake up in sunny South Florida today....well actually its rainy outside but still.

We are usually in Florida for one of two things. Things that Wes and myself are obsessed with.

Disney and Cruises.

In fact we are taking the girls on their first cruise over July 4th.

But alas this time we are not.

We are here to go to Cleveland Clinic in Weston to try to figure out if I even have a brain these days. ( actually we have my MRI on a CD so AHHH HAAA I have proof for all of you that yes indeed I do have a brain)

I really am very apprehensive about this appointment and all the "what if"s" but who would not be.


Flying:

Don't you love to fly? No, I don't mean going 90 down the highway or jumping off your bed going weeeeee!

I love to fly to people watch.

Oh my you say.
How dare I.
Come on get that shocked look off your face, you know you do it too.

No I don't stare anyone down and I am sure people have looked at me and gone hmmmm.

But let's just say there are some interesting people in this world.. Like the guy with his whole face tattooed, or the lady with every inch of her in green ( green clothes, green nails, green hair, green suitcase, green pocketbook, green shoes.) I think she really liked St. Patricks Day....

I will try to update asap on the visit to Clevelan Clinci, but be paitient.......

If your like me, you have no paitence....but we all have to be something.....right?

It's only 9:00 a.m. and I Think I am down to 9 Spoons

No I have not lost my mind...



Promise....well not today anyway, I can't today there is way to much to do.



Medical Records are the first priority well actually they are the third.



The first was I actually got out of bed with no tears.



The second was I hugged each sweat little girl of mine buy and told them to have a great day at school.




When I talk about spoons what I am I talking about?

I think the below link and article very much sums up my day. Now, no I do not have Lupus or Cancer but what I do have is very real to me. It zaps me every minute of the day.

To understand what someone who does not look sick is going through Christine Miserandino found a great way to explain it using something simple.....spoons.

If you have time today..or even if you don't..make time....LOL

Read the following, it is brilliantly put and will make you have as Dr. Phill says...
an AHHHH HAAAA moment.

But most importantly remember:

Be kind...
For everyone you meet is fighting a great battle - Plato.


The Spoon Theory
by Christine Miserandino
"The Spoon Theory" at



http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Pop Rocks and Dogs

We have a miniature Dachshund.....

His name is Ub.....

He is very Cute.....

As Sydney says he is very naughty....

He is not the brightest light bulb in the pack


He found the girls old Pop Rocks Today.....

I wish you could have seen the results....

Divine Intervention

Divine Intervention


What is that exactly?????


For me it means a miracle, that only God can explain.

What was my Divine intervention today you might ask.

Well my facebook friends know, so I will clue the rest of you in.

I called Cleveland Clinic in Weston Florida to inquire into their Neurology Department and two Doctors that I had heard about that specialized in Intracranial Hypertension. I wanted to see what little old me could do about making an appointment.

We are talking about Doctors that are Specialist here.
We are talking about a very rare disease
We are talking about a huge organization (think Mayo Clinic standards)

We are taking little old me, patient with no pull, trying to get an appointment thinking it would be months out and thinking I would just have to pass the information along to my Neurosurgeon and see if he could move the appointment date up.

Divine Intervention happened to me that very moment on the phone this morning.

As I was talking to the nurse telling her what I was calling about ect..she says "wait....we have a cancellation"....(insert pause) "When are you planning on traveling to Florida" My reply was " As soon as possible" she said---- How about March 18th at 2:00.......

Insert long, whistling pause.......mainly generated by me.. (let me also insert that in my time warp state of brain these days I thought the 18th of March was next week)

So after the pause....which was probably only one second....I said "I'll take it"

So she took all my information down and told me everything I needed to bring.

Let me just say I was stunned.......speechless........

Could this really be happening. I am going to see a Doctor that has over 20 years experience with this new enemy of mine. Yes, Yes, Yes, I am.

More Divine Intervention:

Wes is off the next few day ( he is a pilot so this is a rare thing timing wise)
I had no trouble calling to secure all medical records, and radiology films....I was expecting a fight.

Flights looked good.
I found a decent car rental rate.
A decent hotel rate.


Divine Intervention........only God has the answers sometimes....and maybe we should just not question the hows...

And the Rest of the Story Part II

Okay people you are about to be bombarded with blog post so don't say you were not warned....

Okay?.....Okay....

I have some exciting news, well exciting to me anyway so just sit there and pretend to act excited...Deal?...Deal

Continued form last post

We headed into Rex on March 6th and I got prepped for surgery. I was a ball of nerves...Hell who would not be.

Lets face it I am letting them cut open my head..willingly

We head into the operating room and they give me those nice sleepy meds.....zzzzzzzz I go

When I wake up what do you think my first reaction is?

Come on now, play along...guess

I looked around for someone I knew........nope
I tried to stand up...nope
I tried to talk...nope

The correct answer would be, I felt my head and realized that the Doctor has shaved, yes shaved part of my hair. EEKKKKKKKK!!!!!

Now in retrospect, it is a totally vanity thing and I have very long hair and unless I wear it down, which by the way aint gonna happen, so don't expect it, you cant tell that I am missing a three inch wide section of hair.

Now why it never dawned on me that he would have to do this, heaven only knows. But the hair thing is a mute point know as we all know it will grow back and like I said, none of you are ever, I mean EVER going to see the shaved head side of me, trust me its not a pretty site.

So I was placed in step down ICU and that was another shock, what the heck.
I think I still had not come to terms that this was Brain Surgery. I still don't think I have.

I was released the next day and was hopeful that all the pain in my head would be gone.

Right?

Wrong?

Everyday since the shunt placement my head has hurt. Sometimes it only hurts a little others it feels like Fat Albert is jumping on it constantly.

Everyday brings new issues, new symptoms, new challenges....sigh.....


The shunt I have placed was put into my head. It almost feels (to me) like a golf ball has become stuck inside my skull. They then attached tubing to the shunt and ran it down my neck, past the collar bone and it end in my abdomen where the excess spinal fluid drain.

If you did not stop reading, or need a cold cloth, or just threw up a little, take a moment I will wait.

.
.
.
Okay wait over

The initial setting (from surgery) they put the shunt on was 8 (remember my initial pressure was 43 and normal is 20) and I was still having issues so I went in and had it adjusted.

Adjusted..what the hay, how do you have it adjusted.

Well , by George, it is an adjustable shunt. The Neurosurgeon has a device he places on my head and he can adjust the pressure up or down.

So I had it adjusted to 14-15 which now I fear is to high.

As of today my stitches are out of my head and my abdomen.

I still battle the head pain....daily
My ears fill like I am underwater all the time.
I am dizzy constantly, standing up or sitting down
My peripheral vision, down and to the left has now started to blur
The left side of my face is numb as it has been since the end of January
I don't sleep
My left side has pain that comes and goes
I have searing head pain sometimes that feels like a hot pan has been placed on my head
I have trouble with nausea and vomiting that comes and goes as it pleases.


So the shunt was not a be all end all fix and in fact a shunt is only 50% of the fix most of the time in patients.

I am now learning a lot and while the above seems scary and horrible I have found that others with my condition experience the same thing.

Now for the next post and some awesome, exciting news.

The Rest of the Story....For Now....

So how in the heck did I get here.....and how do I get back???



Well I can't go back but man I wish I could, life was easier before January 30th, 2009.


That’s the day my life really....well got complicated, to say it nicely.

I worked half a day, went to my mothers house, went upstairs, fell asleep and the pain just never stopped.

What’s funny is I even remember what I wore to work that day. I had on black pants, a yellow sweater and black boots. It’s funny how we remember those small details.

I thought it was another migraine...I thought I had been having them for about a year.

The kind of headache where you feel your eyes may explode from the light and all you can do is hide under the covers and hope for relief. Not to mention the vomiting and sweating that goes with it but I will spare you those details.

A few days later and a couple of trips to see my General Practinoer with shots of Nubain and Phenegran, the headache/Migraine pain was still there. Hmmmm not good.

With some gentle (well maybe not) prodding he referred me to a Neurologist as I had maxed out on Narcotic shots (three within a 1 1/2 week span).

The Neurogist, what can I say nice about him....well not much..Because isn’t it if you can't say something nice don’t say anything at all?????

He thinks I am having status migraines (migraines that last over 72 hours) he wants to put me in the hospital to receive DHE treatment (this is an IV fluid treatment that is given over the span of several days)

I agree to this......THREE TIMES!!!!!

Between the span of February to March I was hospitalized three times and given DHE treatment..

Needless to say it did not work.
I had an MRI, it came back fine.
CAT Scan .....fine
Blood Work...fine
Hormone Levels....fine
Rabies Test....fine....Just kidding....you have to have some humor right?

Nothing was working....At best I am in a blur, a time warp. The days go buy and I am on so many pain killers I can't tell you much.

I go home only to head back to Rex Hospital...I am worried, Wes is worried, my girls are worried, my family worries, heck the dogs worry but I think that’s just because they are afraid no one will show up to feed them at the appropriate time.

So as I lay in the hospital the Doctor on call for the Neurology office I am seeing suggest doing a spinal tap.

WHY??
Well why not... We have done everything else...lets rule out infection.

But what he finds is that my spinal pressure is at 43 YIKES!!!!!

YIKES....because normal is 20....

What I have is double and that is not good.
Two days later they do another spinal tap hoping the first reduced some pressure....

NOPEIt came back at 38.

The diagnosis Intracranial Hypertension or as it is also called Psedudotumor.
I, Wes, everyone ask what does this mean????

Short answer, I need a shunt to drain all the excess fluid off my head....NICE

I ask do I have to??? And I swear to you the Neurologist reply was "You must be delusional if you think you are not having surgery" Wow...that’s some kinda bedside manner for ya...at least he was honest....

So in numbness and dumbness I leave the hospital with a surgery date in hand...March 6th...

We shall get to the rest of the story tomorrow

What the heck????

I have this new thing in my life..I don't like it..I don't want it...

I now have to deal with it...

I have Intracranial Hypertension...I have to double check the spelling everytime I type it....

I have a shunt in my head....

My head hurts all the time....

No one seems to understand, least of all me....





So what the heck is all this??

I promise this will be the last boring stritly medical post I do...LOL

Taken from the Cleveland Clinic website

Pseudotumor Cerebri(Also Called 'Benign Intracranial Hypertension')


What is Pseudotumor Cerebri?
Pseudotumor cerebri literally means "false brain tumor." It is likely due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the subarachnoid space surrounding the brain

In other words my brain makes too much spinal fluid.

Taken from the http://www.mayoclinic.com/

Definition
Pseudotumor cerebri (SOO-doh-too-mur SER-uh-bry) occurs when the pressure inside your skull (intracranial pressure) increases for no obvious reason. Symptoms mimic those of a brain tumor, but no tumor is present. Pseudotumor cerebri can occur in children and adults, but it's most common in obese women of childbearing age.
When no underlying cause for the increased intracranial pressure can be discovered, pseudotumor cerebri may also be called idiopathic intracranial hypertension.
The increased intracranial pressure associated with pseudotumor cerebri can cause swelling of the optic nerve and result in vision loss. Medications often can reduce this pressure, but in some cases, surgery is necessary.



Symptoms:
Pseudotumor cerebri symptoms may include:
Moderate to severe headaches that may originate behind your eyes, wake you from sleep and worsen with eye movement
Ringing in the ears that pulses in time with your heartbeat
Nausea, vomiting or dizziness
Blurred or dimmed vision
Brief episodes of blindness, lasting only a few seconds and affecting one or both eyes
Difficulty seeing to the side
Double vision

Causes
The exact cause of pseudotumor cerebri in most individuals is unknown


It is listed on NORD, the National Organization of Rare Disorders


Anyone can develop Intracranial Hypertensionegardless of age, gender, ethnicity, race or body type. However, it does effect more women than men.

There is no cure, there is no magic fix but it is treatable.....

There is a research foundation http://www.ihrfoundation.org/ that has a lot more information. I have just touched on the basics.

Whewww....from now on we will just talk about me, my family and day to day stuff.

Brandy