On The Verge

Its going

2010-01-08T01:36:00.002-05:00

Wow!! My last post was November 9th!!! Shame on me.

A lot has been going on. Well duh, its been almost two months!

Let's see, where to start.

Things had steadily improved with me. I started driving again, started going out of the house, heck I got a bike for my birthday and have rode several times with Miss Piper. I would say that things were looking and feeling much better! My pain levels seem to be under better control and the drowsiness and sluggishness has finally gone away. As far as sleep goes...well that is still a constant battle but I will take the little victories for now.

I had my follow up with Dr. W at the beginning of December in Baltimore. He was pleased with my progress. We discusses changing the setting of the shunt but decided against it because he feared that might do more harm than good. He made it very clear to me that my body and my brain have been through a tremendous amount in one year and I need to take things slowy. I cannot expect to be right back where I was a year ago in just a week. We also talked about what to expect in the future. Unfortunately, shunts do not last forever. They typically only last 2-6 years and then they will have to be replaced. Sucks, I know. But as Dr. W said, you cannot go around everyday just waiting for it to fail, you have to live your life. The plan is to go back and see him in 6 months unless there is a problem then I will see him before then.

He did agree that if I wanted to try going back to work part-time then that would be okay. He did stress the part-time and wants me to take it slow. Wes and I had thought about me filing for permanent disability (which I would more than qualify for) but I really want to be able to work! Crazy as it may be, I miss my job. So after much deliberating and soul searching my first day back was on December 14th.

So how has work been going. Well....its been hit or miss. more on that later.

I am still seeing my awesome Pain Management Doctor and he truly has been a life saver. I really think if it were not for the pain meds I take daily I would not be able to make it through each day. Through my appointments with him, he has also diagnosed me with Chronic daily Migraine. Fun times, kids.... He says this is quite common in people with Intracranial Hypertension. As time goes on I am now able to tell the difference in a pressure headache (Intracranial Hypertension) and a Migraine. There are different ways to treat the two of these so knowing which one I am having at that given moment helps me in determining what medicine to use.

So things had been going really good and then the week of Christmas I started to feel not so good, and to be honest I have just not felt very good since. Sigh.......

At first I just thought it was the stress of Christmas but now I am starting to get a little worried that maybe my shunt is malfunctioning. I have had some ringing in my ears and several episodes where my vision has become blurred and spotty. Dr. C, my pain management Doctor wanted me to try a three day course of Relpax and prednisone this week but after two days of that I just could not take it anymore. This medicine make me so sleepy and tiered and just plain ughhhh. So I took the medicine on Tuesday and Wednesday and said NO MORE. Thank goodness the girls went to there dads today (Thursday) I slept till 4:30 this afternoon and that's with me going to bed at 11:30 last night!!!!! See I told you this medicine was evil!!!!

Remember how I said earlier that work was, key word was going good. Well this week I have only been able to work one day. Sighhh.. thats not good. Basically I think I am going to half to break down and call Dr. W in Baltimore and see what he thinks is going on. I don't know if maybe I need another Lumbar Puncture to see what the pressure is or what?

I really wish this would go away. I think my family seems to think it should have. Somehow I don't remember being told that? Will they ever just accept that this is a part of who and what I am now? This has got to be one of the most fustrating parts of this disease, helping other people understand. It is just not magically going to go away, it does not work like that.

So that is my update for now. They are calling for snow here and thats always fun...

I will make some calls tomorrow to Doctors and hopefully start the ball rolling to find out why I was feeling so good and now feeling so bad.

It Could Be

2009-11-09T05:08:00.001-05:00

It could be worse

Yeah, but right now it’s pretty bad to me.

Never compare two people’s levels of pain, despair, sorrow, hurt ect….

There is just no way to compare.

I wish more than anything I could say that my head feels great and that I feel like going out and jumping right back into life, but I don’t.

I know that the people in my life mean well but trying to push me into going and doing when to sleep and telling me I don’t need to take this and that medication is well….not helping. Frankly, it’s hurting.

A big part of it is they want the “old” Brandy back. Well I do too. But I am not so sure that will ever happen. What if it never happens?

Everyday I wake up and pray that today is the day. That today will be the day my head decides to behave and not hurt. I have had an ongoing excoriating headache for almost a solid year. Yes, there have been breaks in the pain but those are few and far between. Now, just stop for a minute and place yourself where I am. In that one year, four brain surgeries, meningitis, hospitalizations, E.R. visits, blood draws, C.T. scans, spinal taps, PICC line, the list goes on. I have missed soccer games, volleyball games, awards days, field trips. The list goes on and on.

Today is my birthday……

What do I wish for? What do I want for my birthday?

I have a very simple wish and want this year.

I want to be pain free.

But what I really want;

I want to wake up everyday and my head not hurt.

I want to not have to take any medication, not even a vitamin. I only want to have to see a Doctor for a yearly physical or maybe just a nasty cold. I want my long hair back and these scarves and wigs thrown away. I want the scars on my stomach and arms to be faded away. I want to be able to sleep like a normal person without the help of a sleeping pill.

Above all, all I really want for my birthday is what and who I used to be. I am just not sure that will ever happen and maybe it is time to start to acknowledge that and learn how to cope with who the new me is.

So Happy Birthday to me and here’s hoping that 31 is a heck of a lot better than 30!

I found this quote and thought it was something to ponder.

“When life veers from the course you had planned out, re-evaluate your priorities and maybe you’ll find that what you have is better than what you had planned”

Number 4

2009-11-03T02:02:00.001-05:00

Number 4

That’s right number 4. This is the fourth surgery I have had since March. I am beginning to become an old pro at this. If that is at all possible.

This surgery was a little different in a few ways.

For one thing, this time they put the shunt on the left ventricle on the upper left side of my head whereas in the past surgeries they had placed the shunt in the right ventricle in the lower right side of my head. The reasoning for this is there has been so much trauma to the right ventricle and it basically is becoming harder and harder to go in on that side. I have tiny ventricles to begin with so the extra trauma is not helping. Typically they (neurosurgeons) do not like to go in on the left side because it is a more complicated surgery and poses more risk. What are those risk you ask? Well to be honest, we never asked. LOL. It had to be done and frankly in this situation I would rather be ignorant.

The seconded thing that was different was that Wes could not be there. He had flight training and well, unfortunately the last day of training was on Friday. He would finish up his training in Charlotte and drive to Baltimore.

I was also surprising clam going into this too. Heck after four surgeries in less than a year you tend to become rather calm about the whole matter. Mom and I drove up the day before and Dad flew in. I did not sleep much the night before but was ready to get going.

Pre-op seemed to take forever. This time I had an extensive meeting with Anesthesia. During my last surgery my jaw locked up and my mouth clenched tight causing problems with airway tubes. This can be as a result of repeated surgeries and being put under anesthesia many times. We were told for future surgeries to let the Anesthesiologist know about this so that they could be prepared to deal with it if this should happen. To try to prevent this from happening they used a different type of medication to put me to sleep and as a caution had equipment in the operation room that they would need just in case. By the way, my jaw did not lock up and the Anesthesiologist did come by to check on me two days later, (I thought that was impressive because she certainly did not have to, in fact this is the first time I have ever had one check on me afterwards) she said that because they had the information of what had happened last time they were able to use different medications and that helped prevent an ugly incident. She was very nice.

So a big hug and kiss from Mom and Dad and off I went.

The next thing I know I wake up from surgery and OH MY @%#^@%^!!!!!! I have never felt pain like that before in my life. Between my neck and my head I am not sure what hurt more. Apparently, one reason that they do not like to do shunt placement on the left side is because it involves a lot of tunneling in the neck. Um yeah. I can attest to that.

As for the pain, they were doing a really horrible job controlling it. Let me remind you all that these days I see a Pain Management Doctor and with that I have simply graduated from most simple types of pain relief. They had me taking something right out of surgery that I already take at a higher dose three times a day every day. Now I am not a Doctor and do not claim to be one but HELLO!!!!!!! This will not work. So needless to say my first night after surgery was horrible. So Wes (he got there Friday night around 10) asked nicely about finding something better to control the pain, when that did not work he had to get firm about it. Finally I had relief. Well, as much relief as could be expected.

To be honest much of Friday thru Sunday is mostly a blur. Between the agonizing pain and the medication I just do not remember much. My in-laws were in Pennsylvania visiting my brother-in-law and his family and heading home so they stopped by for a brief visit which was wonderful.

Overall I have to say that I am somewhat disappointed with the aftercare this time around by my Doctors and Sinai. My pain management afterwards was less than adequate. My Doctors knew what my current medications where and did not seem to take that into account. I also had a Nurse Practitioner from you know where come by to see me on Monday morning. She walks in, never telling us her name and says “Okay your times up, time to go home”’. Ummm I don’t think so. That was not the only thing about her that hit me wrong but I think will refrain from discussing it further. Let’s just say a call was made to Dr. D’s office that she was to never set foot into my room again.

I guess the most disappointing thing about the aftercare was that we had to call Dr. W and Dr. D’s office to see if they were going to come see me before discharge as by Tuesday neither of them had. I did see Dr. W and he does not want to see me again until mid December or early January. I have yet to see Dr. D. Even going up for my post-op appt she had an emergency surgery and I had to see her PA. I know that cannot be helped but what could be helped would have been for her to see me in the hospital before I left. I was discharged on Wednesday and very ready to get home.

From this surgery I left with 25 staples in my head and neck. (yes, Wes counted) I also had incisions in my abdomen that were done laparoscopically. As for my hair, they basically parted it down the middle and shaved the entire left side. Yep, you read that right, shaved the whole left side. When I got home I went to my hair stylist and had her match the right side also. My previous surgeries they had shaved the bottom right side and I was able to camouflage it, this time there was no camouflaging what had been done. I mean really I was only left with a patch of long hair at the top right of my head!!! What was a going to do, a comb over? Believe me I tried, it just wasn’t happening.

I now am the proud owner of a ton of scarves and also a beautiful wig of long brown hair that looks quite fabulous!! I took Wes to help me pick it out and to tell you the truth it was very traumatic. I never dreamed in a million years I would be looking for wigs.

As for the question that is on everyone’s mind- I am sorry to say that No, my headaches are not gone. They are still very much here, still hurt and I just don’t know if they will ever go away.

Update

2009-10-16T02:50:00.003-04:00

I've been bad.

I have not updated like I should have but to be fair my eyes have bee hurting so much and the instances of blurred vision and black out vision make it kind of hard to be on the computer let alone type.

The testing in Baltimore went like thy thought it would. DUH.ummm yeah!

I ran he gament on the pressure monitor from 5 all the way to 60/600. As Dr. W said there is no doubt that I have IIH. So what is the plan?

Well part of the plan involves the fact that I am sitting in Baltimore typing to you right know from a hotel room!!

Surgery is tomorrow at 1:30. I have to be there at 9:45. They will be placing a new VP shunt in. This time they will go in on the left side (the previous one was on the right)

I am really hoping that this works but at the same time I am going to be honest with myself in knowing that it may not. It could take care of all of the headaches, it could take care of only a few, it could take care of none.

But for now we will hope for the best.

I am sure the next update will be filled with lots of information.

Till then.....

Itching..for paint

2009-10-01T23:59:00.004-04:00

I am watching way too much T.V. these days.

When your head hurts the television is just the natural thing to do as it is just about as mindless as it gets.

I tend to go through spells on what channels I get "stuck" on. For a while it was the Travel Channel, then Bravo and now it's HGTV.

Oh yes HGTV.

And now by watching it I am sooo itching to do something, anything to my own house. Mainly I really want to put a screened pouch onto our existing on. Um yeah...okay. Dreaming a little big at the moment but hey ya gotta dream.

So for now I think I will stick to painting. Probably not the greatest idea with head pain and low energy but when I am having a good day I do want to do something productive.

Even though Wes hates painting I did manage to drag him to Lowes to help me pick out some colors. For starters I plan on doing the girls bathroom then I want to tackle the kitchen.

Tonight I started the prep work on the girls bathroom so hopefully tomorrow will be a good day and I can get it painted. I will post picks when it is done.

For now I am going to kick back and watch some more HGTV and then head to bed and maybe dream of tile!!!

Every Season

2009-09-30T03:09:00.001-04:00

Every Season

I realized today I have been dealing with IIH (Idiopathic Intracranial Hypertension) for all four seasons of the year now. Winter, Spring, Summer, and now Fall.

It’s quite amazing to me that just a year ago I did not even know what IIH was or could even imagine the hell that would await me the coming year.

I mean really??? So far in the span of those four seasons I have had 8 hospitalizations, 3 brain surgeries, and countless Doctors appointments and test.

MRI, CT Scans, Blood Work, PICC Lines X-Rays…..whewww you name it I’ve done it.

I know more medical terminology than I ever wanted or cared to know.

I now don’t just have one Doctor anymore I have a team of Doctors.
My “team” consist of a Primary Care Physician, Neurologist, Neurosurgeon, and Pain Management Doctor. It only took until August to get this team “right” LOL….but seriously all of these Doctors are the best fit for me and my illness and they communicate wonderfully together which is great being that two are in Baltimore Maryland, one in Clinton North Carolina and the other in Cary North Carolina.

Here’s the update for now, but as we all know things can change but I pray very hard that it stays as is.

I will head to Baltimore on October 6th with Mom for admission to Sinai on the 7th. For this admission they will be placing a lumbar catheter and be doing pressure monitoring and then a drain trail. Basically for 24 hours they will continuously monitor the pressure (ICP) in my head. This will help give them a better idea of what the pressure is actually doing and what shunt and setting to use. After the 24 hours they will drain approximately 40cc of fluid to see if I get any relief from that. (DUH!? The whole things a big duh moment for me but that’s a loooong drawn out issue and well, lets just not go there.)

For the testing I will either stay 2 to 4 nights in the hospital depending on the first rounds results. If all goes as we expect we have a penciled in surgery date of October 16th for new shunt placement.

So there ya go. It can’t get here fast enough.

Not having the shunt currently in place is causing my head to feel like a giant balloon overfilled with air. Not fun.

Let’s face it folks, pain meds are only going to do so much as the problem is pressure. I need the pressure to release out of my head. There is only so much room up there and trust me your body really does not like it when you try to add to much

An Apology to Mom

2009-09-22T19:20:00.001-04:00

An Apology to Mom

I felt good enough yesterday to take my seven year old and ten year old shopping yesterday with my Mom.

Did I mention that my ten year old was involved and this shopping trip was for clothes?

My sincerest apologies go out to my own mother for every clothes shopping trip she ever had to endure with me.

It's been quiet

2009-09-19T03:40:00.003-04:00

It’s been kinds quiet around here huh? Well sorry and shame on me.

Without the shunt in I am a mess with head pain at times to say the least.

The craptastic Doctor that I walked out on did do me on favor though, he got my appointment with a pain management Doctor moved up by nearly three weeks. So for that I do thank him. In fact, I walked out on him on a Tuesday and had my first meeting with the pain management Doctor on Friday.

Now this Doctor is very well….interesting. I guess that’s a good way to put it. He is definitely not a stuffy clinical type. One of the first things he asked me when meeting him was did I mind if he cussed, I said no, he said great because he was a in the Navy and had the mouth of a sailor. LOL

Before meeting with him I had to sign a contract, yep a contract. Some of the things it stated are that at each visit I will bring all medication and he or his nurse will count pills. I also had to write down the name and telephone numbers of two pharmacies and only use those. I also had to store all medications in a safe, which is not a bad idea. The reasoning for all of this I suppose it the type and strength of medications he is prescribing..there is no fooling around here, none whatsoever.

My first appointment was great, heck it should have been being that it lasted two hours. He was absolutely wonderful to talk with, like talking to an old friend. He is not just about prescribing pills but also about using books, relaxation and meditation to manage the pain. His goal, as well as mine, is to get me to a 3-4 on the old proverbial pain scale that I loathe so much. That is what he considers functioning. Right now most days I stay at a 5-6 with spike to 7-8 and on a really bad day stay at an 8. So for now he has started me on two new medications, one of which I had to stop taking because it sedated me way to much. But as he has said we have just started and we will find the right combination. Did I mention that I really like this Doctor!!! He is one of the few that have not taken a look at my medical issues and run for the hills.

Did you know it is possible to gain 22 pounds in 14 days? Yes, it is.
Did you know that your legs, ankles and feet will swell up like balloons? Yes, they will.

That would be what happened to me.

It started out with some mild swelling then got worse. So I went to the Clinic and unfortunately for me was not able to see my regular Doctor. The Doctor I saw put me on lasik and said if the swelling was not better go to the Emergency room. Yes, I kid you not. That was on Friday. On Saturday, it was not better but way worse. So Mom and I headed to the E.R. at Rex. After blood work, X-ray, CT w/contrast that determined that it was peripheral edema- swelling due to accumulation of fluids. Well duh!! Still no one can figure out why this is happening. By this point I have gained 15 pounds. They put me on Bumetanide along with the lasik and told me to follow up with my primary Doctor. Ahhh yes, me the boomerang.

Well, all is not going well and gets worse Tuesday night. At this point I have gained 22 pounds and the swelling has become pitting edema. That is when you press on my foot the mark stays there. Well Tuesday night every time I would lay down it felt as if someone was standing on my chest. I also had a very wet cough. I would try laying in different positions but nothing seemed to help. It was a tight gripping feeling in my chest and the pain was tingling down my arms. It scared me to death.

So off the the E.R. we go again. (at about 4:00 am) They take me back pretty quickly and at first they are pretty sure I have congestive heart failure, as all the tell tale signs are there. They threaten to admit me and run test after test after test. Finally the E.R. doctor comes in and lets us know that they have ruled out congestive heart failure but that I will still need an echo cardiogram because of all the strain that has been put on my heart by gaining 22 pounds in 14 days. He also calls my primary Doctor and between the two of them they decide not to admit me. Thank Goodness. They also think they may know the culprit of the swelling, Neurontin.

Neurontin is a pain medicine that I have been on for about a month and one of the rare side effects is extreme swelling. Ahaaa!!! Sure enough I stop the medicine and within two days the swelling is completely gone and 17 pounds too!!! Unfortunately I will still need to have the echo cardiogram to see if any damage was done.

Now onto the Meningitis front. I had the spinal tap on Monday. Boy are those things not fun. I mean really how can anything involving a needle going into your spine be pleasant? My opening pressure was 31. Way too high. A normal pressure would be 12-17. The Doctor doing the spinal tap was very nice and wanted to try to drain me down to 25 but for some reason was only able to drain me down to 27. Oh well, that is better than 31.

So that fluid was left to be cultured and I also went and had blood work done to see if it looked clear.

Guess What? I have good news for a change… Can you believe it?

Both the spinal fluid and the blood work came back clear!! The infection is gone. YIPPEE!!!!

So what’s next?

Back to Baltimore of course.

I will head back there for 48 hours of IPC monitoring.

What is that?
Well that is where they insert a probe into my head that will continuously monitor the pressure in my head. This will hopefully give them a better idea where to place the next shunt and what type of shunt to use and what setting it should be on.

After this testing I will then have surgery to place a new shunt.

As of now things are still a little shaky on when I will head to Baltimore. It will either be on the 24th of this month or the 7th of next month. I should know more definite details Monday. Everything depended on my spinal fluid, bloodwork and swelling issues and now that they are all clear we just need finalize with Dr. Williams (we have been in contact with him almost daily, God bless him!) The reasoning for the possible date in October and not the week before is because that is a major Jewish holiday and Siani is a Jewish hospital and they do not do any elective procedures during that time period.

So I think I am all caught up for now and I know I have probably left a ton of things out. I will try to get back to posting more regularlly.

Burning Bridges

2009-09-04T00:03:00.001-04:00

Burning Bridges….?

Well yesterday was a very interesting day to say the least.

I did something I have never done before and never in a million years thought I would actually do.

In the middle of a Doctor’s appointment I walked out. I stood up interrupting my Doctor’s toddler like tirade, told him I did not appreciate him talking and acting that way towards me, and left.

Yep, you read that right. The above is not a typo.

And to make it even worse I left my poor mother behind sitting there in the office. (to be fair to me though I thought she would follow, you will see in a minute why she did not)

I know what you are thinking right now… Oh no she didn’t !!!!!!

Oh yes I did.

Here is what happened.

I went to see the Neurologist that I have seen numerous times in the past (technically I am still his patient) and he is actually the one that diagnosed me with Intracranial Hypertension. Throughout the past nine plus months he has said numerous times that he in not an expert when it comes to Intracranial Hypertension and has limited knowledge on it. Okay fair enough. He was also thrilled when I found Dr. Williams (the Dr. in Baltimore)

You keeping up so far?…Good let’s keep going

Well….Since my shunt is no longer, and that is what controlled the spinal fluid, and the spinal fluid is what causes the horrible head pain…well bingo…the horrible, gorilla type searing head pain is back. This is not good. I am having, at times, uncontrollable headache/migraines. Because I am still dealing with the Meningitis and on I.V. antibiotics, I have to wait until that infection is cleared before I can have another shunt placed. It probably will be mid to late October before that happens for various reasons.

Being that Dr. Williams is in Baltimore he felt it would be best if someone locally to me dealt with and controlled the pain aspect of things. Seems logical right? Ummm apparently wrong, wrong, wrong.

No Doctor wants to have anything to do with the level of pain management care that I need and let’s just say that my Neurologist here (NC) was not thrilled with being told I needed pain management care done locally. Hmmm, truth be told he just really did not like being told anything by another Doctor and that’s why this whole ugly matter of me walking out of his office with him in mid sentence happened.

The office visit started out “normal” enough. I met with his P.A. and went over what had recently gone on with me and blah, blah, blah. Like always she went to confer with said Neurologist and Mom and I waited.

He walked in after I had talked with his P.A and shit hit the fan, so to speak from the get go. He felt “Put Down” and did not appreciate some “Baltimore Doctor” telling him how to treat a patient and that “Doctor did not even have the courtesy to call him to confer or anything!!!” He was “Not going to prescribe ------ medication just because some other Doctor said so” and on and on. It was like a four year old having a tantrum. The breaking point for me was when wonder boy jerk Doctor said that “those Doctors in Baltimore are treating me like and Intern” and that he had “already done his internship”

It was like the man had slapped me at that point. I was done. I stood up, tears running down my face, voice shaking and told him “I don’t appreciate you talking to me that way, you have no right”

Whew……got all that.

Needless to say after walking out of there I was a complete mess crying and shaking.

So let’s all take a minute and breathe and assess the situation…

Basically my jerky Neurologist (that’s what we will call him, I won’t name names) felt put down by Dr. Williams. He did not like being told what to do and he felt like he was being treated like a student/intern. I think he felt like Dr. Williams was treating him like a “seconded” class Neurologist without ever once speaking to him.

Well fine and dandy but as a professional he should have dealt with his feelings of anger and frustration before he ever walked into the exam room where I was. He had no right to act like he did towards me, let alone talk to me the way he did. There is no excuse for that. Doctors are not Gods. Plain and simple. I think they sometimes forget that they are working and doing a service for us. Now, don’t get me wrong I am very, very thankful for all the wonderful Doctors that are out there. Without them I would be in a heap of trouble. But some like him need to be taken down a notch or two.

Ok… Now my little four year old tantrum is over now.

So you’re probably wondering what my Mom did when I left her sitting there. Like I said before I really thought she was going to follow me.

After I left she voiced all the frustrations I had but just didn’t have the energy to say.

She calmly and assertively reminded him that I was still his patient and what was I suppose to do from here? How was I suppose to handle the pain aspect of things and mange until my next shunt surgery if everyone (Doctors) continually wanted to treat me like a ping pong ball and never truly take action and responsibility towards the problem?

From the start of this whole mess it has been a battle of Doctor vs. Doctor and Neurosurgeon vs. Neurologist. Huh? You say… Well… The Neurologist says that all my issues need to be handled as a surgical problem and then the Neurosurgeon says that they need to be handled as a Neurological problem. Frankly I don’t give a damm and just want someone to handle them.

Anyway, back to the battle of the Neurologist and Mom

He hemmed, he hawed, and he continued to be a jerk.

Mom held her ground. She said over and over to him “What is she suppose to do?”

She never raised her voice, she never got ugly.

She told him that we had not left his practice because we did not like him or thought he was a bad Doctor, we simply sought additional resources because he had even said that as far as the Intracranial Hypertension aspect of things he was just at a loss of what to do.

This is when he calmed down. I think he finally remembered that he had said that.

He apologized.

Good for him…..

He apologized for acting that way to me. He said that he just was a little floored that the Doctors in Baltimore would just send me back into him without calling him, sending records, notes, ect…. and just expect him to do “whatever” without some form of consultation.

In all fairness, yes I can be fair; I can see his point on that.

However and a big, huge, gigantic however is the fact of how he handled the situation. It was uncalled for, unprofessional, and in my eyes unforgiving.

He had his panties in a bunch over his pride. He felt put “off” by another Doctor. Simply put…..he handled the given situation before him poorly.

So, did we walk away with any pain management care…..nope.

But what did happen might surprise you, heck it even surprised me.

Playing Doctor

2009-09-02T00:45:00.004-04:00

Playing Doctor

Umm, now that I have your attention….

Get your head out of the gutter. I don’t mean playing Doctor like that…really, I don’t.

For those of you who don’t understand the above well good for you, for the others well…. we shall leave it at that.

They, being the Medical Professionals of Sinai Hospital, have sent me home with a PICC line. Hold up you say!!! What is a PICC line? Let me educate you with a brief interlude of definition.

* A PICC (Peripherally Inserted Central Catheter) is a special catheter placed in
a vein through which medications, blood products and fluids can be given.
The PICC is long, thin catheter (16-24 inches long) made of polyurethane. It is inserted in a large vein in your arm ,near the bend of the elbow, and then advanced to the superior vena cava, a large blood vessel that leads to your heart. A PICC is inserted in persons requiring intravenous (IV) infusions over an extended period of time. It prevents the need for frequent needle sticks for IV insertion since the PICC line can stay in for up to six months.* (taken from Patients and Family Education NYU Medical Center)*

Do you feel so educated now? I know I do!

Yes indeed they have basically entrusted me with open vein access straight to my heart! That may be a little dramatic, well a lot dramatic but you get the idea. Frankly this thing (PICC Line) makes me nervous. I feel like at any moment I may rip the darn thing out. I know I have to be careful with it but still. It also serves as an awful reminder of all that is going on.

The reasoning for the PICC line is that I need two more weeks of I.V. antibiotics for the lovely infection that ruined my shunt and caused it to have to be removed. Meningitis is nothing to play around with so a pill form of anything will not do. On a positive note I do have a Home Health Nurse that comes four days a week and does the I.V. treatments for me and she also taught me how to do them myself. She is just wonderful!

If you could have only been here the first time I administered the I.V. medication myself. Well, I take that back. The first time Wes and I administered the medication. What an absolute riot and intense hour that was. I think that beads of sweat poured down both of our heads as we read and re-read the instruction sheets on how to administer I.V. medications.

Now let’s stop for a moment and see the irony in this situation. Can you believe that they actually make instruction sheets on this? Hmmm neither can I, but they do.

We did get it done though and I am still alive to tell about it so that must say something. As Wes said they should not let people like us play Doctor with things like this….hmmm I might agree but there are still seven days in a week and the nurse only come four so you do the math.

It's looking funky....I know, I know

2009-08-30T18:08:00.007-04:00

I know the blog looks a little strange right now.

For a while when you visit there is no telling what you will see. I am dangerous with my limited knowledge of templates and headers and layouts for blogs, so we shall see what happens.

So for now if you are bored or maybe looking for a good laugh keep checking back in to see what in the world I am up too!!!!!!!

A Good Laugh

2009-08-29T07:53:00.003-04:00

"What will you do, if it does not turn out how you expect?"
"I do not know. Nor shall I worry about it until it happens. I still have an action left to take; until I have exhausted it, I shall not despair." - Robin Hobb, Assassin's Quest

A Good Laugh

at my expense but don’t feel bad because I am laughing too!!!!

People are amazing creatures when you think about it. No, I don’t mean in a scientific, spiritual, or mechanical sense, I mean in an everyday, common sense, practical, heartfelt sense.

It seems that some people, to put it lightly and nicer than I want, have not an ounce of sense or tact about them.

Why do I tell you this? Well let me tell you about my experience checking in at my local hospital to get a CT done. (Now, let me remind you that I have a lot of hair shaven off but with the help of styling and bobby pins you really can’t notice.) Any who…,after I checked into the main desk I went to sit down and Wes went to the restroom.

As I had just sat down I hear someone say “ what have *(*(* to (*&)*)” yea, I did not understand it either. Well for starters I did not think she was talking to me so I said “excuse me, are you asking me a question?” “Yes”, she replies and says “Lady what have you done to your head” SAY WHAT!!!! I cannot believe a total stranger has just asked me this ridiculous question. So after I had picked my jaw off the ground I calmly told her that I had a shunt. That seemed to pacify her. I really walked away stunned not knowing whether to laugh or cry. On one hand how insensitive on the other hand it was an honest question….yea your right it was a insensitive. Lets face it people I was in a hospital waiting room not the deli department at Walmart.

But come on really, why would you ask that? That I put up there with the “Are you pregnant question. You never asked that question until you are 115% positive then you wait some more.

After talking to Wes about it I figured out what I should have said:
“Well it’s the darndest thing. Those lawn mower blades just kept coming
after I fell off.

Come on you know I would never say it but heck it's funny stuff.

Overall no harm no foul right…Wes and I have had a good chuckle over that.

But that brings me to the “But You Don’t Look Sick” and “Everyday Doctors”

Now, just to be fair most people mean well. They think they are helping, bless their hearts I am not trying to be offensive but hey like I say you either laugh or cry and I choose to laugh!!

Intracranial Hypertension is an invisible disease. What is an invisible disease- a chronic illness or disease that is not visually apparent. Basically someone has a illness or disease but does not look it. They do not have a wheelchair or cain, they look energetic an may walk just fine and seem normal. That’s what an invisible disease is.

Frustration would be my definition but that is neither here nor there.

The world is full of advice and suggestion and just do this. It seems like everyone has an MD in front of there name when you get sick…LOL. A great quote I see posted on some forums I visit is

“My disabling chronic illness is more real than your imaginary medical expertise”

A little harsh, yes but it is just meant to be funny. Remember laugh people, laugh!!!!!

People always like to comment about my horrible head pain. Notice I said head pain and not headache; I am giving that word up. This is a common conversation I will have with someone.

“Oh, you have a headache? I have some Advil." First of all, Advil won't get ridof the type of headache/head pain I have, not even close. Second of all, it won't even touch the type of pain I experience from the spinal fluid in my brain squishing my brain against my head. I have narcotics and muscle relaxers for the pain I have. Your Advil is like a tic tac to me.”

Hate to say it but its true. The whole family of Advil, Tylenol, and Excederin are nothing but candy corn to me these days…

People are a curious creature that is for sure.

Back to Reality

2009-08-29T02:08:00.002-04:00

Back to Reality

Ahhh, yes inhale deeply…well not that deep, these days you just never know what is in the air!!!

I woke up this morning to the best thing; two beautiful girls bounding towards me and tackling me onto the bed in a fit of kisses and hugs. We sat in the bed for quite a while and just talked and laughed and carried on like only mothers and daughters can do.

Reality of being home is wonderful.

The dirty clothes piled up in the laundry room are wonderful.
Seeing that my house is in desperate need of cleaning is wonderful.
Hearing the girls bicker is wonderful\
Soccer season if in full force

Well maybe that’s a messed up kind of list but it is just great to be back to the reality of everyday life. What is and always will be most important is my two girls being happy and that at the end of a long day I can say a prayer with them and tuck them into bed. It is absolutely amazing how two little souls can have such a great impact on you.

Yes my friend’s reality is a great thing, even if it involves dirty socks!!

Where we left offf

2009-08-27T09:41:00.001-04:00

Ahh yes, where were we. That’s right they had come to take me to the O.R. So much for one hours notice. But looking back that was probably a good thing, it gave me way less time to worry and think.

Sitting in the O.R holding pen (well that’s what I like to call it) I was surprisingly calm. Well then again I had four wonderful people around me to help me stay that way, Mom, Dad, Trey and Wes. I still could not get over that Trey had surprised me and driven all the way to Baltimore. What an awesome thing to do. He is just an awesome kind of guy and brother. I talked briefly with Dr. D and she gave me her calming words that everything was going to be okay, I was going to be okay and that it was time to get the infected shunt out before it had time to do more damage. Next up was the Anesthesiologist, he was a riot and I remembered that I’d had him from my last surgery. The only reason that I remember him was the way he referred to the medication that actually puts you to sleep. He called it “Jackson juice”. Yep, I kid you not this is what he said. That with some other hilarious things made him hard not to forget. This is actually a welcomed thing when you are about to go into surgery and are nervous as a tick as it is. Before he leaves the O.R. pen he says he will come back about ten minutes before it’s time to go to the O.R. to give me some relaxation medication. This way I won’t be so anxious and won’t even remember going into the O.R. Remember this little tid bit….it’s important in a minute.

So we wait what seems like an eternity but is not and then it is time for me to tell everyone bye and give hugs and kisses. I get a shinny silver surgical hat to wear and off we roll. As we are rolling pat O.R. rooms, I am thinking “Wow, I have never seen this part of the surgical side” we finally get to O.R. room 8 and in we go. Wow, it’s bright in there and it looks like there’s a party going on! The radios blasting a Beatles song and for a moment I think I have died, why else would I be witness to this strange site?! Then it dawn on me, the Anesthesiologist never gave me the “happy” shot. LOL He comes barreling through and saying something to the effect that they took me back too soon. To that a surgical tech in the room says “well that’s fine you just owe her a double dose of the happy shot” Over all no harm done. So I lay on the bed and here come this huge mask of blue. It looms over me and I know I am about to surrender. The Tech tells me to take deep breathes and count backwards from 100. I think I made it to 98.

Since coming out of surgery I won’t lie and say that everything has just been wonderful. Let’s face it; I had a piece of equipment in my head that even though it may have been barely working it was doing something. My head fills like a helium balloon expanding. This may be due to the Intracranial Pressure building back up. This almost leaves me at times feeling incapacitated and shaking in pain. Since the surgery my Doctors have been trying to pin point a medicine that can help control the pain (nothing is going to rid me of it). The main problem they are having is that what works comes in I.V. form and I cannot do that at home.

Another issue that has brought is ugly head to the surface is nausea. It is almost constant and sometimes it follows through. For the sake of all, I will not go into anymore detail

My eyes have never given me a lot of problem unlike many patients with Intracranial Hypertension, and I am thankful for that, but since the shunt has been removed my eyes have decided to play games. I have two black dots or “floaters” in my right eye and have experienced several episodes of tunneling and double vision. While in the hospital I had an Ophthalmologist examine me twice. He did not see any swelling (the main concern in someone with Intracranial Hypertension) but did say that my eyes have become lazy.

The infection in my shunt they cultured and grew to determine what type of antibiotics I would need. Lucky me, this has sent me home with a PICC line and I.V. antibiotics for two weeks.

So did you fasten your seat belt for all of that?

Now what’s the game plan?

I go back in 10 days to have the staples removed.
One week after stopping the I.V. antibiotics I will have a Spinal Tap done to make sure the infection has cleared.
Then I will meet with Dr. D. and Dr. W to discuss options.

On a really good and fabulous note: One way to relieve to symptoms of a headache is to get a great big hug from a nine and seven year old.

Fasten your Seatbelts Kids

2009-08-25T12:42:00.001-04:00

Fasten your Seatbelts Kids

How can it only have been four days since I took the time to blog. How can only four days have gone by when so much has happened? I just don’t slow down, not even for four days to happen.

We spent Wednesday night in our new “home away from home” Sinai Hospital. I got a little bored/antsy and took some pictures of the room. I know, how weird is that? My room is huge (compared to most hospital rooms) besides there just being a bed and side table for me there is a complete sitting area with couch and chair. In the stand up closet there are four folding chairs and even with these out, there would still be room for more. One really great thing, (and very convenient for the nurses I would think) is there is a nurse work station in each room. Each patient’s room has a station for the nurse equipped with a computer and basic supplies. Instead of having to trudge back to the nurse’s desk to check something, they can just check it right in your room.

To start with Thursday morning I had a CT scan. You will start to see a theme with me and CT’s so don’t worry it’s not a typo. Then the dreaded Spinal Tap/Lumbar Puncture. I will not go into to many details, because frankly I don’t want to relive that even in my head again. My opening pressure from the LP was 31. Whoooooooo…..Not Good….Really Not good. If you remember most “normal” peoples opening pressure is between 10 and 18. Not 31.

This is when I knew, this is when all the thoughts and concerns I had were confirmed.
I am sure some people thought I was insane or panicking for being back in Baltimore so soon. I am sure the thoughts crossed everyone’s mind when a little over a week ago I started complaining about my neck being sore, or just feeling crappy like I had the flu. At home I would randomly run a low grade fever of 99 or 100, discussions were had about that not being a “real fever”. I am sure everyone thought I just need to get a hold of my self, after all it had not been that long since I had the revision surgery. But with an opening pressure of 31 I knew that I was validated with my concerns. If there is one thing I have learned it is to trust your body. I know one heck of a lot more than anyone else about it.

So now that we have blood drawn and spinal fluid drawn it is a wait and see game. We wait and see if any infection or bacteria grow within the sample. This could take 3-4 days. By this point my neck has become my worst enemy..LOL…seriously. I never knew that my neck could possibly hurt as much as it did but WOW. It is to the point that I have very little range of motion and it just throbs. Friday morning brings another CT scan, okay strange. The Doctors now want to send me over to the Keager Eye Center for a full eye exam. This is connected right beside Sinai Hospital and I and my transportation friend hit the halls. Know let me remind you that I just had a lumbar puncture yesterday…that is a very important point right now. My transportation friend drops me off (I am in a wheelchair and stay sitting there) in the waiting room, signs me in, hands over my medical chart and I sit. I sit, and sit some more. Now let me just say that my Nurse had some into my room right before I left and told me the Eye Doctor wanted to se me know!! So I figured I would go in wait maybe 10-15 minutes and then be seen. As I sit in my wheel chair I have found a clock on the wall, you know just to glance at every now and then. But as I sit in the wheelchair I start to get hot, and that old familiar feeling of slight pain runs across my forehead. I also feel sharp pain in my back. Hmmmm, lets see I have just had a lumbar puncture less than a day ago and here I am trying to sit up in a chair…Guess what folks? It really does not work that way. I look at the clock 30 minutes have passed. I sit there and honestly try to tell myself I can do this, but my body is saying otherwise. I look at the clock and 45 minuets have passed, I can’t so this anymore. I am in a cold sweet, my head is pounding so bad that I am unable to keep one eye open anymore, my back is starting to arch and worst of all I am extremely nauseas. Thankfully this is when a nurse sees me and tells reception that I need to get back to my room. There is some flash of argument that I will be seen really soon, but thankfully the nurse will hear none of this. By the time I got back to my room, I was a mess. In complete tears already, seeing Mom, Dad and Wes sent me into hysterics. I can’t remember the last time I was in that degree of pain. I know all this is due to the lumbar puncture but still geesh… I will save you all the details of the rest of this day because #1- they are not pleasant and #2- the Charge Nurse ended up having to be called into this mess and really strong narcotics were needed to make this nightmare stop.
To say the least, the rest of the day…..I have not clue what happened. I woke up and it was Saturday.

Saturday came and I was off for another CT, this time with contrast. What is going on with all these CT’s, I am not sure, but intend to find out. We met with Dr. D and she let us know that the cultures from the blood and from the LP were not growing anything yet, which was somewhat surprising. To be on the safe side though she wanted to get a CSF fluid sample closer to the brain, and that would be in the shunt reservoir. She felt like she needed to get a clean sample. She cleaned to top of my head with bedodine and after draping she used a long needle and pulled the fluid out of the reservoir.

The rest of the day was pretty mindless and we all thought that nothing would happen (surgically) for three or four days. After all, it would take that long for the new fluid sample to show any infection Wes was scheduled for a three trip so he went home to get ready for that and Mom and Dad planed for Dad to fly home on Sunday night.

Sunday came and I was off to another CT. What gives, what’s up with all the head CT’s? Turns out they are using these to also watch for infection by changes in the brain….DUH.
So the day is mostly going by pretty boring? Mom had just gotten the confirmation on Dad’s flight home when my room door opens and Dr. D’s PA comes in. She bypass’s everyone and looks at me and says “When and what was the last time you ate”. Well, the last time at ate was at 9:30 and I had a blueberry muffin and coffee. I guess the obvious question of “Why” is on my face. The sample culture from my shunt reservoir has started to grow, it is an infection. This means that my shunt is infected and is way to close to my brain and this sucker has to come out fast. She tells me she has to check in with Dr. D. and let me know. I stand there with a look of shock on my face for about a minute and thinking wow this is happening really quick.

First things first. I have to call Wes and let him know. When I call him he is ten minutes away from the airport and fifteen minutes from checking in. I gave him a brief run down of what was going on and wham he was off the phone with me to make calls. About that time Dr. D’s PA came back in to let us know that surgery would be sometime after 2 o’clock on Monday. Nothing to eat or drink after midnight. What a long night that was.

Monday I tried to stay calm, key word try. So as I am sitting there cruising on the internet and out of the corner of my eye I see someone walk into my room. When I look up guess who I see? Trey, my big brother…can you believe he drove all the way from North Carolina just to see me! Know let me re-phrase that. I can believe he would do something like that because that is just the type of person/brother he is. But still, he was there. He was there to cheer me on. It almost made me cry. I had to get out of bed and give him a huge hug!!!!

So we wait, and wait and wait. 12 o’clock turns into 1 o’clock and 2 o’clock turns the corner into three. Now my nurse has told me that they will give me an hour or so “heads up” before they come get me. HA HA…yea right. Mom and I are talking about something and there is a knock on the door. Two ladies dresses in OR scrubs are there and say they are ready to take me to surgery!! So much for that hours heads up, LOL.

I will continue the rest of this and tell you about the surgery in the next blog.

In the Hospital

2009-08-20T06:54:00.003-04:00

In the Hospital

Life is like a Country Music Song I have determined. Right now mine would be…
“If your going through Hell”

Well that’s not the name of the song, I think but that about sums up what’s going on right about now.

We got to Baltimore around 1:00 today. We have definitely found the trick to the traffic pattern. The only problems we ran into were a little outside of D.C. and that was mostly because it was a monsoon of rain. We headed over to Dr. D’s office and sure enough they knew I was coming in and said they would work me in asap. We did have a bit of a wait but that was not a big deal.

She came in and right away said she was glad to see me and that I had made it here without incident. She took one look at me and felt my neck and said we need to put you in the hospital.

Based on the neck stiffness, low grade fever, headaches, overall achenes, and redness along the shunt path signs were pointing to a shunt infection. But without putting me in the hospital and running numerous test, labs and procedures she has no way of knowing.

One interesting and I think funny (if you can find any of this funny) part of our
Conversation with her is that she said she has not had a patient with a shunt infection in over four years and she has never seen on a patient the redness along the shunt path. To this my reply to her was, and I kid you not I did say this was “well you’ve never met me before”. Let’s face it people I am like the walking black cloud these days!

Back to the appointment….

What she is afraid has happened is that the shunt has become infected. The infection that she is worried about is Meningitis. If the test results do come back as Meningitis then, well it’s not going to be an easy rest of the month for me. Basically if it is positive they will within 24 hours take out my current shunt, surgically. Then I will need to have time to heal and let the antibiotics clear the infection in my body, this would be approximately 10 days. Once the infection has cleared then I would go back into surgery for placement of a new shunt. For all of that I would have to remain in the hospital. With meningitis there is no playing around.

Wes asked her if the shunt is not infected what else could be going on? Her answer was that she just did not know. See, this is my I love Dr. D. She is honest. She does not try to be super Doctor know it all. Sometimes the best answer is “I don’t know” and “We will have to go from there” In my opinion this is one of the many attributes that make her such an amazing Doctor.

So she left her office to make a few calls and to get us a room at Sinai. I don’t think Wes and I said much in the time that she left, heck what was there to say at this point?

She came back in and told us that a room was not ready yet but to leave our cell phone number and they would call us as soon as one was available.

On a good note, if there is one is that the bleeding in my brain and from the ventricle has completely cleared up and dissipated. So, in theory I should have a working shunt. Hmmmmm. Also, while in the hospital Dr. Williams my Neurologist, whom I adore, will be coming to see me.

So we left her office to get something to eat since we had not eaten since we left early that morning. We also had to make a zillion phone calls to let everyone at home know what was going on. Well, let me rephrase that, Wes has a zillion calls to make. LOL

Side note- If you ever see a restaurant called Noodle & Co I highly recommend it, very yummy!

After eating we headed to the hospital and I told all natural sunlight adios!
Since being admitted it has been a whirlwind of activity.

First off Dr. D’s PA came in and did an extensive evaluation. She was very nice btw. Then for all the blood work. I was expecting normal blood work. Ummmm, I was wrong. You know those nice little tubes/vials at the Doctors office that they usually put your blood into? Well, those were no where to be seen in my room. In the place of that were collection bottles. Yes people, collection bottles. They were the size of the mini glass coke bottles and upon seeing them Wes left the room and I thought my eyes were going to bug out of my head. But I survived just fine.

I will have a spinal tap Thursday morning. They will test the spinal fluid for infection. I hate, I despise spinal taps. I know that I will inevitably get a spinal headache and that my back is going to be in flaming pain. I already have a killer headache so this I guess will just be adding insult to injury.

They have not started any I.V. antibiotics yet, and with good reason. They want the blood work and spinal fluid to show them a true/unaltered specimen of what is going on. If they had started me on antibiotics then the spinal tap would not show them a clear picture of what the infection really is. But, as soon as the tap is done I will be staring I.V. antibiotics. I already have an I.V. line in place ready to go. The antibiotics they will be giving me are the same they would give me if they knew I did have meningitis. They do not want to “wait and see” my health cannot afford a wait and see approach.

That sums is all up.
Whew…..

Sigh…

I cannot believe this is happening.

When does this nightmare end? This is a really bad ride and I want off.

I am trying to stay positive. Believe me, I am. But frankly it’s getting a little tough. Everything and anything that can go wrong, does go wrong. To make matters worse this time I am hundreds of miles away from my family. I am miles away from two precious little faces that cannot begin to understand why Mommy is not there. I missed there first soccer practice tonight. Tomorrow I am going to miss their Open House at school. I am not going to be there for the first time ever for them to meet their teachers! I am missing so much. I am missing them with every beat of my heart.

It’s not fair…..this whole damm thing is so not fair!!!!!!
I want my life back. I don’t think that is too much to ask.
But here I sit in a hospital, yet again, waiting to see if I am going to have not one but two surgeries. My head and neck feel like vice grips are on them and my body aches from head to toe. What does it feel like to feel good? I don’t know anymore, and I can’t remember anymore.

Sigh……….

Just when you think you are over the hill something comes and slams you back down again. I know that I have two choices in the matter. I either sit at the bottom of the hill and cry and scream or pick myself back up and trudge up the hill again.
I choose to trudge up the hill. It may take me a while and I may kick, scream and cry the whole way up but I will get to the top. One day…..I am going to make it to the top of the hill and not fall back down. One day I am going to conquer this hill.

Not feeling well, Headed back to Baltimore

2009-08-19T03:25:00.001-04:00

Not feeling well, Headed back to Baltimore.

The last couple of days have not been good ones.

My headaches at times have seemed to ramp up but something else is going on.

I noticed very suddenly a sharp pain in my neck (the side where the shunt is) and then excruciating pain set in and has not let up.

My neck has become very stiff, tender, and sore. It is swollen in places and feels liked knots have developed within the shunt tubing. To turn my head to the right is impossible. I am not able to raise my arms without tears coming to my eyes. The reservoir in my head where the shunt is feels “different” I cannot explain it very well but it does not seem as large and protruding.

I am also running a low grade fever. This is not a good thing. Being that I just had brain surgery less than a month ago this is very concerning even if it is low grade.

I have redness that almost looks like a rash down my neck, over the collarbone and down my chest. This is not good at all. This is a sign of an infection.

I have been told on numerous occasions that any fever and redness along the shunt track is sign of infection and needs to be taken care of ASAP.

After being in contact with my Neurosurgeon, she prescribed a heavy duty muscle relaxer, which did nothing, and ordered some test. The first series of test were X-rays of the abdomen, cervical and skull. In these series of test they were looking to see if any of the “hardware” had dislodged or moved. It has not. The second set of test was a CT scan. I do not know the results of these yet.

After much phone tag and debate, Dr. D feels it is best if I come in to her office to let her examine me, because lets face it you can’t examine someone over the phone. What concerns her is the fever, swelling and redness as these are all classic signs of a shunt infection. In my conversation with her she did mention possible hospitalization for I.V. therapy but we will cross that bridge when we get there.

I thought the headaches were bad, but couple those with this neck pain and WOW! It has begun to hurt when I walk and go up and down a step as that seems to jostle everything. Now, trying to lay down in a bed….well lets just say that thank God Wes is here.

So that is the latest. Wes and I will leave tomorrow at 6:00 a.m. We have found that this time avoids the traffic congestion in Richmond, Fredericksburg, and D.C. I am not looking forward to the car ride because every bump is going to be so painful.

Just when I think I have reached my threshold of pain, it gets upped again.

I am hoping and praying that the shunt is not infected and that a hospitalization or surgery is not going to be required.

Hope is sometimes all we have left, but it is something very grand to hold onto.

Piper turns 7!!!!!

2009-08-19T02:36:00.001-04:00

Piper turns 7!!!

Wow!!! Where does the time go?

She cannot be seven can she? I demand a recount! Haha

It seems like yesterday Miss Piper Collins could hardly walk and now she’s a little soccer playin, fashion diva.

We had a great birthday party for her on Sunday and I could not have pulled it off without a lot of help from my wonderful mother.

The theme of Piper’s party was “Cooking”

When all her guest arrived they each received an apron and used special paint markers to decorate it. Then they each decorated a placemat for themselves using foam pieces. It was great to see the different artistic abilities of each child.

After that it was time to cook! Pizza time! Each party girl made their own personal pizza and I have to say the girls made some mighty nice looking pizzas. For the adults that were there, we had hot dogs with all the works, potato salad, and chips.

Now for the really fun part. Each guest received their own 9” cake plain cake. On the table before them were three containers of white icing and dozens of bottles of sprinkles. And if that was not enough, there were cake decorating bags filled with different colors (red, green, purple, pink, blue, yellow) of icing and a variety of cake tips. With the only instruction of how to hold the cake decorating bags I told them to have at it. LOL!!!!!

These girls had a blast decorating their cakes. There are some budding artist out there people, so watch out. Each cake was decorated completely different and they were all sooo beautiful. I think the girls really enjoyed this. I mean, how many times as a kid were you handed a cake and a ton of icing and told to have it and not told how it had to look? LOL! After they had finished there edible creations I put them in a cake box for them to take home and show off and enjoy with there families.

So now after all this cake decorating it was time to eat cake!!! My mom made Piper’s cake and it was too cute!! It was in the shape of an apron and had a real bowl and mixing spoon set on it. To outline the apron and to show the apron stings she used pull apart twizlers. Written on the apron cake in icing was “Happy Birthday Piper. #1 Chef “

Yummy, Yummy…I will say here that the icing mom and I made ourselves for the kid’s individual cakes and Pipers cake and it was sooooo good. Heck, it should be when it called for 3 sticks of butter and 2 sticks of Crisco for each batch. Eekk!!!! LOL!!

So with cake you must have ice cream, right? Of course. So I had set up and ice cream sundae making station complete with marshmallows, nuts, cherries, M&M’s, Oreo’s ect… for them to make their final item.

After presents it was time for everyone to leave.

Whewwww what an exhausting party. I was spent and so was my head. But it was worth it when Piper came up to me and told me that this was the best birthday ever and that the girls thought this was the coolest birthday party they had ever been too.

See, that’s the thing. When you are a Mom you will do anything for your children, anything. To me, it does not matter how bad I feel just as long as I continue to see my children happy and smiling. I

Seven….can you believe she is seven?

Next thing you know she’s going to be sixteen and giving me a royal heart attack…so maybe seven is not so bad.

Questions I will try to answer

2009-08-13T16:44:00.003-04:00

So I had a lot of people ask some questions in light of my recent blog entries, so I thought I might try to answer them. Try being the key word..LOL

Q: Where are the Syd and Piper (my children) when you travel back and forth to Baltimore?

A: They are with their Dad, my first husband. I try to schedule everything so that they are with him when I have appointment so not to disrupt their lives.

Q: How long does it take to get to Baltimore and why don't you just fly since you can for free?

A: It takes around six to seven hours to drive it depending on traffic. I don't fly into Baltimore becuase #1, I have to fly standby and usually I have a set time I need to be somewher and can't afford not to get on a flight. #2, Once getting to Baltimore I would then need to rent a car and that is just another added expense we just don't need right now.

Q: Why doesn't Wes alway's go with you to all your appointments?

A: Wow! I can't belive somebody asked this, but I guess it is a fair question. Yes, he does have FMLA but when he uses it he does not get paid. I am not working right now so basically he sorta needs to. LOL!!! So he goes to the big stuff and things when he is already scheduled off.

Q: Are you going to cut your hair again or shave it all off?

A: Good question!! I seriously thought about shaving it all of, well for about 5 seconds. I am not about to pull a Brittany Spears. This time its not as bad as I thought it would be. I am still able to cover it up pretty good and with the help of bobby pins it stays in place pretty nicely.

Q: With the blood in the ventricle wouldn't that be Hydrocephalus?

A: Another great question! That was what my Doctors feared was happening when they saw the CT scan after surgery. But my ventricles have stayed very small, in fact the ventricle where my shunt is has collapsed. Which for my shunt to work is not good but for fear of hydrocephalus it rules it out. For those who don't know, in Hydrocephalus the ventricles expand and get larger which is a problem. Dr. Dorai has commented several times how tiny my ventricles are which is very common in patients with Intracranial Hypertension.

Q: Why are you traveling to a Doctor so far away?

A: Not to be rude butif you read back over my past blog entries you will see why. It's not been easy to find a Doctor that can effectacly treat this disease.

Q: Since this new shunt is blocked wouldn't this surgery be a failure, and aren't you mad at these Doctors?

A: Well...yes and no. I don't consider this latest surgery a failure becuase who would have thought that I would have a brain bleed dirctly during/after surgery that would immediatly clog and block up the shunt? She has done tons of these surgeries and I am only the seconed patient she has ever had this happen to. What are the odds of that? Wish I had that kind of luck in Vegas! No, I am not mad with her. I think she is an outstanding Doctor. She has not given up on me and continues to have a plan.

So there you go, some random questions answered.

Today, so far, has been a pretty good head day pain wise. I hope it stays that way. Wes made some awesome homemade pizza last night and tonight he is making spagetti with his homemade suace. I love when he cooks!!!

Tomorrow I am going to make Piper's birthday cake with a lot of help from Mom. Hopefully her birthday party will come off without a hitch! Now if we could just fiqure out what to get her.

Baltimore ^$^#& ummmm Well Ya Know

2009-08-12T20:47:00.009-04:00

Well maybe that's not a very nice way to open things up?

But that about sums up how I feel at the moment.

Mom and I left for Baltimore yesterday and I think we both had our doubts that we would even make it to I-95. I woke up with an excruciating headache that morning. It was to the point of being in a sweat and sick to my stomach. I took my Oxycontin and Percocet..nothing. I had spent the previous night at Mom and Dad's but we had to go to my house for me to pack. By the time we got to my house I really thought my head was going to explode. I knew it was time to bring out the big guns. Yep, Torodal injections. I never thought I would welcome drawing up a medicine into a needle and injecting it into my upper thigh but I gladly welcomed it this day. About ten minutes after the injection and a Phenegran pill I felt so much better. I slept all the way to Baltimore.

We met with Dr. Dorai this morning and I knew in my heart of all hearts it was not going to be a great appointment but still I guess it just stings to finally hear it directly from her. I knew things were wrong because my head is still hurting as bad as ever.

She looked over my CT scans and the blood in the ventricle has not gotten any worse and is starting to dissipate. Now for where the appointment goes downhill fast.

She does not want a shunt patency test done now (this is the test where die is inserted into the shunt to see if it flows through that will show if the shunt is blocked) because it will only tell her what she already knows. The shunt is not working. Yes, you read that right. Not working. The blood in the ventricle has blocked up the shunt. How did that happen? Well...When they took the first shunt out it was attached to tissue in the brain and the removal caused bleeding. This was not seen until after surgery was over on a CT scan.

We asked does this happen a lot? She said No. I am only the second person she has ever had this happen to. Oh course I am. That's the kind of luck I have.

So what do we do from here?

Basically we wait. Crazy I know. The blood should dissipate. Should being the key word. Once it dissipates we will do a shunt patency test to she if the shunt is working. If it is not we will do surgery again to replace the surgery. There is a change that the blood in the shunt has clotted up in there and even after the blood in the ventricle dissipates the shunt will not work.

However, if my vision starts to be effected before the blood clears she will have to go ahead and place a shunt in my left ventricle. (this is not the desired location for a shunt) She will not compromise my vision.

So what do I do about the pain I am in for now. This is a very legitimate question we asked her. She very plainly stated that I do whatever I have to do to stay comfortable. Meaning, pain medication wise.

I am to have another CT scan in one month and mail her the scan. Then I will see Dr. Doari and Dr. Williams and we will make a game plan from there.

Whewwww.. That's a lot to take in. I am not sure I have taken it all in yet.

I still cannot believe that the surgery did not work. I really thought I would walk our of that hospital pain free and feeling like my old self again. It was not to be.

We did ask her about an LP shunt. This is a shunt that is put into your back, if you remember this is the shunt that I came very, very close to getting. She said that she has never put one of this in anyone because there is no way to control the valve and overdraing is a big problem with these and low pressure headaches. Boy am I glad I did not get one of these because I have had low pressure headaches before and the only thing that makes them better is to lay flat. That is definitely not a way to live.

Overall I am just numb. That is the only way I know how to describe it. This disease has been right in my face for over seven months and I am still do not feel like I have a handle on it yet. I do feel like I have finally found the best set of doctors for this. Dr. Zeena Dorai and Dr. Michael Williams, they are wonderful!!!

I cry, I yell, I am angry, I am sad, I am frustrated, I am disappointed.

But I have hope. I will never loose hope. You can never loose hope.

Fred Flintstone

2009-08-09T01:19:00.000-04:00

Fred Flintstone

Welcome to Bedrock!!!

Well my ankles are welcoming you that is. They are more like cankles at this point. They are swollen and hideous. It’s a good thing it is summer and I can wear flip flops because there is no way these puppies would fit into a pair of shoes.

I woke up on Thursday and right away noticed how swollen both of my ankles and legs were. Of course I was panicked by this. After a couple of phone calls, off to my PCP it was. Considering that I had just had major surgery and the swelling was severe he was concerned that I may have developed a blood clot in my legs. The only thing that made him think it may not be that, was the fact that both ankles and legs were involved. He sent me off to the hospital to have an ultrasound done on both legs to rule this out. While I was going to be there he went ahead and ordered the CT head scan and X-ray of the abdomen. (one less trip to radiology works for me)

The results can back pretty quickly from the ultrasound…no blood clot…that’s good! Now what is causing all the swelling? After looking at all the meds I was taking we think we may have found the culprit, a muscle relaxer. One of its rare side effects (like less than 1%) is swelling. So no more of that for me…easy enough right? Wrong!!
BTW- The CT of the head showed that the bleed in the head was still there but it had not become any larger.

You would think that simply stopping that medicine would solve the problem, yeah me too. Well the problem is still here and it is now causing my hands to swell!! My poor feet almost look square they are so swollen. As of this evening my calves are swollen and very sore. None of this can be good. I may not hold a medical degree but I do know that something is not right. It goes without saying that tomorrow I will be headed to the Doctor…again

For everything else well…..I had a horrible headache most of today, my side is killing me, and the whooshing has come back in my ears sporadically. Wes goes into work tomorrow for a three day trip and the girls are with there Dad until next Sunday.

Sounds really gloomy but on a positive note…the sun rose this morning and so did I.

Not for the faint at Heart

2009-08-04T22:04:00.003-04:00

So everyone always wants to know where they cut at on my head.

They want to know how big the scar is.

They want to see it.

So I have decided to post a picture of it.

Now I am giving you fair warning that this is not a pretty picture.

I am telling you right now that it may make you squeamish, or sick to your stomach. Its not bloody or gory but it just looks, well...frankensteinish.

I am telling you, no, I am warning you that if you don't want to see it then DO NOT scroll down.

You have been fair warned so don't get mad and be "I can't believe she posted something like that"

TA DA......Wes has dubbed this the question mark incision

So there you have it my friends.

Thank goodness my hair will eventually grow and cover up that scar.

So now you will understand when you see me why I will be sporting a scarf. From my original surgery I lost 14 inches of hair but my hairstylist was able to "do" something and give me a new hair style. This time, there is just not much hair left to do anything with. Oh well...it will grow and on the plus side I get to go shopping for a lot of scarfs!!

Falls into place. Falls into peices

2009-08-04T01:51:00.011-04:00

Home sweet Embassy Suites Home!!!

Considering it has been some form of residence for my parents, Wes, or me for almost a week now.

I was spent Friday and Saturday night in the hospital and was discharged late afternoon on Sunday. Before being discharged Dr. Williams (my Neurologist)came by with the second set of CT scans. (if you remember the previous CT scan showed blood in the ventricles of the brain...not a good thing) The second set/series taken Sunday morning showed that the blood was dissipating and not getting any larger. So that is a good thing!!! On a sour note he did say there is a possibility that the blood may have clotted up/blocked the new shunt OMG!!!! NO WAY!!!! In the same breathe he also said that is appears that the bleed may be a little above the shunt. Aghh....only me people, only me...

So to be honest this has had me in a not so lovely mood.

As far as how I am feeling? Well do you want a sugar cookie answer or the truth?

Ha Ha...you know I am going to give you the truth.

I feel horrible. But hey, what do you expect? I just had brain surgery.

My symptoms and pain are still here....they left for a little while but then they came back....why?

I awoke from surgery on Friday and did not have a headache. I spent all day Saturday without a headache. Now, don't get me wrong my head hurt but it was a sore, hit your head on something kind of hurt. It was wonderful not to have the gorilla jumping, jackhammer headache that has been a constant with me since January.

Well that all went to shit pretty quick.

It started out slow but them came raging back quick as lightning. My old familiar friend headache. Yep, he showed back up on Sunday and has not left.

This really worries me. One sign/symptom of a shunt malfunction or blockage is a return of old symptoms. That combined with the blood in the ventricles does not help any.

Instead of wallowing in despair I took Wes's advice and called Dr. Dorai (my Neurosurgeon) to ask her about this and a few other questions.

#1- What was her opinion of the blood found in the ventricle?
She said that this was not something they expected to happen during surgery (only me right) when they took out the old shunt from the ventricle this caused trauma and that is why there was a bleed. She was however pleased with the results of the second CT scan that showed the bleed was not getting larger. To continue to monitor this, I am to have another CT scan done at home before my follow up visit with her on the 12th.

#2- I am having horrible pain still in my upper abdomen, like before just on the other side.
She really did not have a good answer for this one and to be honest its the only thing she has never really had a straight forward solution/answer for. She feels that it is the tube loose in the abdomen trying to find a place to "rest". Hmmm not what I wanted to hear but I will take the "lets give it time" answer for now.

#3 and most important- The headaches were gone for 2 1/2 days, now they are back.

This is why I love Dr. Dorai. She did not mince words, did not sugar coat it, did not brush it off. Basically, the blood in the ventricles may have caused the shunt to become blocked, I may need another revision aka...surgery. Before jumping into surgical options she wants to see what the ventricles look like on the CT scan. I would also need to have another shunt patency test (this is the test I had where they inject dye into the shunt and watch to see if there is any flow) Mostly she is hoping the headache goes away.
But she is realistic. She is not going to leave me high and dry. She has a plan.

So...... The conversation with Dr. Dorai was not exactly what I wanted to hear, but in my mind I knew that was what she was going to say. Once these horrible headaches came back after being gone for over two days, I knew something was not right.

Since Sunday night Wes and I have been staying at the hotel. Poor guy, I know he is going bananas! Thank goodness we have a two room suite so that I can sleep in one room and he can have the TV roaring in the other. Like always he has been wonderful through all of this. I am sure at times I drive him crazy but when I get upset about this whole situation he is right there to hold my hand or give me a big hug and that lets me know it will be ok.

Today we called my Neurologist Dr. Williams to see what his thoughts on things were and if he wanted to see me before we left Baltimore. He wants to see me next week when I come back for my post-op appointment with Dr.Dorai. He is very concerned about the returning headaches and most likely will try to schedule some testing for next Wednesday also. He will be in contact with Dr. Dorai in the next few days so they can get a "game plan" together. I should hear from him by the end of this week with more information.

I have an amazing team of Doctors, no doubt, all of that has finally fallen into place.

The problem now, is that I keep falling into pieces.

All New Parts for Me!!!

2009-08-01T09:42:00.002-04:00

All New Parts for me!!!

Surgery went well yesterday. Thank God.

The only snafu I ran into was my wedding ring and engagement ring. I started Thursday night trying to get those suckers off. I tried soap, lotion, ice water, Vaseline….you name it. By the time I got to registration and the pre-op holding area my knuckle was four times its normal size. EEKKK!

But have not fear as Mom was near. She new of this trick with dental floss or string to get them off. Problem was, no one could seem to find those items. We and the are discussing this as an Orthopedic Doctor happens to hear this conversation and says “Oh yeah, I can do that with my mask string”

LOL..I swear there was an audience of at least nine nurses and four Doctors watching here get those blasted rings off my finger. The way she did this was taking the mask string and threading it under the ring, wrapping one end and then wrapping the other end over and over the skin. All the while doing this you pull and twist on both ends of the string. This action forces the swollen skin down while also raking the ring across your finger and finally off. Now, it hurt like hell, but I did not want them to have to cut my beautiful rings off.

After all that excitement it was time for surgery. Off I went.

The next thing I know…I am in recovery. Naturally the first thing I did was reach for the top of my head (uhmmm we will discuss the horrid hair later) Then I see Wes. Yeah!!!

He tells me what they did..in a nutshell here we go.

The general surgeon was able to do the distal/abdominal part of the surgery laproscoptically. He did find a mess of scar tissue and adhesions but more importantly he found that the tube was blocked, major blocked. So all the tubing was replaced by new and they were able to find somewhere to place the tube without having to go into the chest cavity.

Dr. Dorai’s part of the surgery was the actual shunt in my head/brain. What she found was that I had a major blockage. There was very little if anything coming out of that shunt. So she replaced the whole shunt system. From the catheter, valves shunt that goes into the ventricle to the tubing that runs from the brain, down my neck and under my collar bone.

Basically it was out with the old (well it was not really old, it was just placed in March) and in with the new.

I don’t remember a lot about being in recovery and that’s probably a good thing.

The only concerning thing going on right now is that the CT scan that I had at 2:30 am, yes you read that right 2:30 am, showed some bleeding in the ventricle where the shunt is placed. Dr. Dorai’s PA is the one who informed us about this. The other Neurosurgeon, that is on call this weekend) will be coming by to check on me and discuss this later today. I asked the PA what they would do about the bleeding, and all she would really say is that she had to talk the other Doctor but normally if the bleed is not to large they will just let it heal on there own.

Pain, Discomfort, Sore, Ache, Bruised, Relived, Anxious….those are just some of the words I would use to describe how I feel right about now. Basically I feel like a Tractor ran over my neck and head. So for now I am going to let them pump me with IV pain relief and close my eyes.

In Baltimore- Pre-Op }}}}}}

2009-07-30T08:51:00.006-04:00

I had my Pre-Op Appointmnet yesterday and everything went well.

As Trey pointed out its a good thing I liked her considering that I am having surgery with her on Friday and all.

Dr. Zeena Dorai will be doing the Surgery at Sinai Hospital on Friday. I have to be there at 7:00 am.

I am so ready to get this over with. She made me feel very at ease and comfortable. She went over my last CT scan and pointed our how small my ventricles are. This is very common in patients with Intracranial Hypertension. She did say that she liked the placement of my current shunt.

So what is the plan???

There will be a General Surgeon working with her during my surgery. His part will be to work on the abdominal (tubing) end of things. His goal is to readjust the tubing inside the abdominal so that it sits somewhere with less scare tissue and adhesion's. He also will be checking to see if the tube is blocked and if it needs to be replaced.
I have had so much pain in my sides that this could be a welcomed change. If he is not able to place the tubing back into the abdomen he may have to place it into the chest cavity although this is not the desired placement. They are hoping he will be able to do all this laproscopticlly but will have to play it by ear.

While he is doing this Dr. Dorai will begin her part of he surgery which is the brain and where the actual shunt is. She will shave the head again and expose the shunt. She will individually take out each component and test it to determine if it is working. Once she finds the piece/pieces that are not working she will replace them. This will include the catheter, valve and tubing. Once she has done all this she will test the flow and pressure to make sure that everything is working before closing it back up.

For now Dr. Dorai's feeling is that I need a new shunt. But as she has said she just does not know and cannot say for sure until she gets in there. After surgery I will be taken to recovery and then to my room on the Neurology floor. The plan is for me to stay to nights in the hospital and then go from there.

Wheww.....that's a lot of information.

I feel really good about this. I know I am in the best hands for this operation and I am just ready to get it over with.

Mom and Dad are headed up here today and I am so glad they are coming. Wes and I are still trying to decide what we are going to do today to keep our minds off of tomorrow. We can't deceide if we should go see the O's play or go check out the Beltimore Aquarium. LOL...it's not so much that we can't decide, it's just a differing of opnion...

I will try to update asap after surgery.

Thank you everyone for all your thoughts and prayers.

A Graying Matter and Why We Love Disney

2009-07-25T13:21:00.009-04:00

On the list of things to do today there is one thing that is circled in red and underlined several, several times.

BUY HAIR COLOR!!!!

I have gray hairs popping up everywhere!!!! For the love of Pete what is this all about!!

I am only thirty!! Now really should this be happening?

I know, I know. It does. But it still very traumatic.

They have been slowy creeping into my life for sometime now and I have been ignoring them and plucking them in a show of resistance.

Last night I stood in front of the mirror for a good thirty minutes just examining my hair. In that time period I started counting the gray hairs.....I lost count at 25.

So hair color it is. Now I have always colored my hair but never for any purpose other than becuase I wanted to. I don't have time before I leave for Baltimore for my hairdresser to color it and my head will have stiches and be way to tender when I get back to tolerate hair coloring, so I must do it myself. Let's hope it turns out okay and not some weird or funky color.

Fantasies in our Recession

In our house we love all things Disney. It is quite an obsession and that's alright by me.

I found this great article and thougt I would share it .
This is taken directly from the Times & Transcript

WALT DISNEY WORLD, FLA. - The Magic Kingdom is awash with rain on a weekday in July. It liquidates the rockets of the Astro Orbiter and pours so much brine into Ariel's Grotto that even a mermaid could drown.

Still, the hordes press on. The crowds are so oppressive, despite the weather, that we have to park all the way out at Minnie Mouse, row 34, and wait for two long trams to pass before we can score four seats. I am with my wife, our four-year-old daughter, and my father-in-law, who has just flown to Main Street, U.S.A. from Moscow, Russia. It is hard to tell who is more excited, the pre-schooler or the 70-year-old.

Where is the Great Recession? I wonder. Not here, "Where Dreams Come True." The shops are crammed, the Pinocchio Village Haus restaurant is overflowing, the sidewalks are like Shanghai at spring festival. Minnows in a monsoon of humanity, we pay our $307 and swim toward Fantasyland.

The queue for the flying Dumbo ride is a python that encircles the tent, then doubles back and swallows itself. Undaunted, little Lizzie and I wait it out in our seven-dollar Mickey Mouse ponchos, spun from a penny's worth of plastic. To fly this flight is her sacred quest, the baby elephant with the big, floppy ears the most beloved icon of her young life. A little rain is not going to stop us now.

"Those boys made fun of Dumbo so his Mom got mad and hit them and the ringmaster put her in Time Out," she explains to the young family behind us, benighted souls who have never seen the film.

After nearly an hour, as we mount the final ramp, we hear thunder in the distance, not that it could come down any harder. Lizzie's mother and grandfather stand under cover at a picnic area and cry to me in two languages, "Allen! She's getting wet!"
"They'll close the ride if there's lightning," someone ahead of us says. But I have brought the Magic Feather with me -- it is invisible, but powerful -- and the storm stands back in awe.
We strap ourselves in and fly so high that only elephants can see us. When our flight ends, and we are dizzy with vertigo and joy, Lizzie climbs out and kisses Dumbo on the ear and bows to him with gratitude.

Wife Natasha and father-in-law Valery want to see everything, ride everything, buy everything, to drink Walt Disney's fictional, fabulous America like rainwater. There is nothing like Disney World in Russia, which is not, in my experience at least, "The Happiest Place on Earth," or even a close runner-up. But we have only this one day.
Abandoning outdoor adventures, I herd everyone into the Carousel of Progress. For this ancient attraction there is no line at all. It is a relic of my own childhood epiphany: the 1964 New York World's Fair. There, it was the General Electric corporate pavilion, long before short sellers were hammering the value of a share of GE down to a couple of bucks. Preserved intact for more than 40 years, first in California and here in Florida since 1975, it is a window on the history of the future that I was meant to live.
The show is set in American homes of 1904, 1927 and the 1940s -- these are unchanged from the World's Fair -- and was updated sometime in the 1990s to highlight virtual reality headsets and laser discs and other short-lived, now laughable marvels.

The theme is a song I haven't heard in decades, but it bursts back into my memory and I sing it as loud as I dare:
"There's a great big beautiful tomorrow
"Shining at the end of every day
"There's a great big beautiful tomorrow
"And tomorrow's just a dream away"

"I want to be fourteen again," I whimper, tearing up.
I am not the only one transported. My father-in-law, the former Communist Party member and Soviet diplomat, tells me how, when he was seven years old in post-war Moscow, he saw Snow White and other Disney fantasies on reels captured from the fleeing Germans.
"I remember the joy and kindness of Mickey Mouse," he says, "but I don't remember Lenin."

We leave the Carousel and slog our way back toward the Seven Seas Lagoon. "It's Cinderella's castle!" my daughter shouts, tugging me through the deluge. Even in the rain, even in recession, we trade our dollars for a firm faith in fairies, and the certainty that elephants can fly.

* Allen Abel is a dual Canadian-U.S. citizen who after more than 25 years of journalism in Canada moved to Washington, D.C. He has been a reporter, foreign correspondent, documentary film producer, columnist and author. His column appears here every Monday.

What a nice news article. That's something you don't see everyday!!

Family Cruise- Good for the Soul

2009-07-25T00:54:00.003-04:00

Family Cruise

Not all thing are bad…No sir they are not.

Some things are fabulous.

We took a vacation with my entire immediate family.

Seven days we traveled together, all twelve of us…yep, count it again all twelve of us.

Now when some people hear the word family vacation they run and hide, start to scream, pop a valium. But not me…I welcomed it with open arms.

In the entire seven days there was not one harsh word spoken, not one fight or disagreement…I kid you not…..

I think I have a fabulous family…a special family…and for that I am grateful.

This trip/cruise was a Christmas present from my parents. This was before any of us knew the word Intracranial Hypertension even existed.

I am sure there are those that thought it was foolish on my part to even consider going on this cruise given the state of my health these days. Lets face it, my shunt is blocked, my head hurts horribly everyday, it takes enormous willpower just to get out of bed each day and I am facing brain surgery yet again.

Sigh…..

But how, as a mother, do you tell your two little girls that because Mommy is sick they can’t go on a trip they have been counting down for over six months? How do you take away a six year olds daily habit of crossing off the days on her calendar to count it down? How do you take away the excitement in their voices as they dream about the ship and new places and people they will discover?

I will tell you how…..It’s simple…..You don’t.

There is no medical reason for me not to go. It will not harm me to “put off” my surgery by a week and wait it out. I have asked my Doctors, I have been smart about it no doubt.

Was the cruise a seven day escape from pain for me…haha, I wish.

To be honest, it took every ounce of energy I had and ever knew I had just to make it through. My head hurt worse that week than it has hurt in a very long time. But as a Wife, Sister, Aunt, Sister-n-Law, Daughter and most importantly a Mother I did my best not to let it show.

Now, don’t get me wrong I had a great time, I truly did.

I walk away from that cruise with memories that I will always cherish and that I would not take back for anything in this world.

Piper- She got to snorkel for the first time ever. She was a pro. We did a snorkeling excursion in Belize and as she and I were paddling through the waters are heads lost in the world below; she reaches her still tiny hand in mine to grasp it. For the longest time we swam hand in hand taking in all the beauty that the sea has to offer. I am not sure if it is possible to cry under water but I wonder if I did. I never wanted to let that small little hand go.

Sydney- She truly is becoming her own person. After a long day in the sun and after her shower she wanted me to curl her hair. After curling and styling her hair she asked if it would be okay to but a little bit of make-up on. We stand out on the balcony of our stateroom, just she and I watching the endless ocean and for no reason at all she turns to me and says “I love you Mama” then looks out into the setting sun. It takes my breath away. What a magnificent creature and person she is becoming.

My nieces- They make me smile, they make me laugh. I am so proud of them all. They show such compassion and grace. There jest for adventure makes me want to try new things too.

Miss Alli- She is so sweet…do they get any sweeter? Even though she is a teenager she always takes the time to love on her parents and grandparents no matter who is around. She does not think twice about it. My two girls idolize her and I cannot imagine a better teenager for them to look up to than her! When we were in Cozumel she took Piper under her wing out in the water without anyone asking or expecting her to. If you ask Piper what she did in Cozumel she will tell you that she “hung out with Allie” and while saying this she has a huge grin on her face.

Miss Avery- This girl cracks me up!!!! She has me rolling in stitches all the time. She is so thoughtful and considerate of others. While in Cozumel we rented kayaks. What a riot that was. As we headed out it started to rain and I don’t mean just a sprinkle I mean a downpour kind of rain. I was in a kayak with Syd and Avery was in one with Anna. As the rain was pouring down on us we collided. OH how we all laughed. If you could have seen Avery laugh at that very moment, with the rain gliding down her face. I wish I could have captured that moment of pure happiness and kept it forever, it was priceless.

Miss Anna- She has to be one of the most loving children I have ever met and the most stylish. She always asks me how I am feeling, now how many ten year old’s do you know that do that? But that is just who she is. She cares. I got the chance to soar in the sky with Anna. We went parasailing together. I will never forget as we were gliding through the air her pure amazement at the world below. She said over and over how quiet it was and I could tell she was in awe. I am so grateful to have experienced that with her. It is a memory I have captured in my heart forever.

Miss Addison- If I had just a little bit of her energy then I would be on cloud nine rip roaring ready to go! If you are ever in a bad mood all you need to do is be around her and you can’t help but instantly be happy. Each night in the dining room the serving staff would have “dance numbers” they would do and of course diner participation is a must. Our Miss Addison was the star of the show! Seeing her each night fearlessly get up and dance (something that I would never have the courage to do) was a delight. She is the courage I wish I had.

Kristie- She is the sister I wish I had. She is a lot of things I wish I was. She is confident, outgoing, easygoing and funny. She planned our Roatan excursion and what an amazing one she found for us. From the beautiful scenery, mangroves, fishing village, iguanas, monkeys and history it was there. One thing I did learn about her is that she truly takes the culture of the country/island in. While in Roatan we saw three young boys fishing in a small village. Their fishing pole consisted of nothing more of string and a hook, but we saw them catch a fish. It was seeing her reaction to this most innocent of task that I realized her passion for the culture of the people and their way of life. The three little boys proudly showed off their fish for us and she and I both took pictures of them. Now, looking back at the picture, I can appreciate just what she saw at that moment.

Trey- He is my hero. He has been for a long time. I know if I ever need anything all I have to is call him and he will be there. Can I ever repay him for what he has given me? probably not? Roulette…nobody wins at roulette except for Trey!!!! Seriously… He wins not once, not twice but three separate sit down times. We all worried before the trip that he would get seasick, god awful seasick. We told him that you hardly ever feel the ship move. Famous last words. I have never been on a cruise ship that rocked as much as this one did!!!! Thank God though, he was fine. See, we told him he would be fine, and he was.

Mom- My Best Friend, my biggest cheerleader no doubt. Without her I cannot imagine how the earth could even spin. She truly hates all things relating to water, bless her heart. On our Roatan excursion part of it was to take a tiny boat to see the mangroves. What none of us expected was that we had to venture Oceanside to see them, and to top it off the teeny, tiny boat had no life preservers (which Mom was quick to point out) I will admit now that it even made me nervous and the fact that coming back our boat driver collided into a sea wall did not help matters!! The whole time we were on that little boat all I could think about was “Is Mom ok?” I asked her several times. It was that experience worrying about her that made me more grateful for her than ever. We survived just fine, and the smile on her face was worth a thousand pictures rolled into one. Mom and I spent a sail away on an upper deck together while the kids played in the pool and the other adults talked. We did not talk, we just sat. I wonder what she was thinking? I know that I was thinking I am so lucky to be loved so greatly by this magnificent women.

Dad- What a tremendous figure of a Man and Father he is. He may appear tough and straight forward but I have learned to know better. We have not always had a “rosy” kind of relationship but time has brought an understanding. He is one of the most generous, understanding, compassionate, and loving people you will ever meet. When my Dad tells me everything will be okay, I know it will be. I love to see him smile. At times it seems like a rare occasion!! On this trip he smiled a lot and I loved it. His grandchildren truly make him smile. I wish could have captured every time one of his grandchildren climbed into his lap on this trip and the bear hug he wrapped around them. I wish I could have captured the contentment on their faces of being in his arms and the smile and love on his face. My only regret for this trip is that I did not get to jet ski with him. We had done that on a previous trip and I know he loved it. It has really bothered me since coming home that we did not get to do that, but upon further thought I have a resolution. Details Later!!!! I love my dad more than he will ever know, more than I have ever told him. This trip brought about in so many ways how I am so like my father….I am proud to say I am just like him..I consider that to be a compliment.

Wes- Oh my!!! We live, we laugh, we love, we fight. We see the world so easily together it is almost scary. We had so much fun on this trip! Since January our world has been turned upside down. Everything that we thought we were working towards has been put on hold, now it is just a struggle to get by day to day. He is there. He has stayed by my side holding my hand all the way. I know it must be hard, I can’t imagine being him. We saw this vacation as a break from the harsh reality we call day to day life. We saw this as a time to connect with each other without medical decisions. We saw this as a time to enjoy Sydney and Piper and delight in their happiness. We had a balcony stateroom and it was fabulous. Wes and I spent a lot of time there. We spent a lot of time on that balcony just talking and a lot of time just there in silence, just being. There is something about the setting sun over the endless ocean and being with the one you truly love that does wonders for the soul.

Overall, it was an amazing vacation. We visited Grand Cayman, Cozumel, Belize and Roatan. I was in paradise with all the people that mean the world to me.

10 Surprising Reasons your Stressed

2009-07-22T17:53:00.001-04:00

10 Surprising Reasons your Stressed

What only ten?

Come on I know I can name way more than that. Well anyway that was a recent title to an article in a magazine I was reading. I could not help laugh out loud at some of the top ten. Take for instance “you never have quiet time” well who does?

But anyway.

Stress. Whats the definition of that anyway?

“Stress is a biological term which refers to the consequences of the failure of a human or animal to respond appropriately to emotional or physical threats to the organism, whether actual or imagined”

Hmmm, or in my terms- Your about to pop your every loving lid and officially loose it. Because you have so many things, people and whatever thrown your way that you don’t know whether to laugh, cry or go hide.

But that’s just my definition.

Stress is just a part of daily existence when you really think about it. There is no “easy” button and if there where how boring would that be?

Well to tell you the truth I think I am Marjory do for some boring right about now.

So I have not blogged in a while, so lets get caught up, shall we?

We shall!!

Boy o Boy…do I have a lot to share…

What else would you expect from me?

I like to say that “ I am incapable of doing anything small, If you can’t go big, go home”
This is extremely sarcastic as you will see.

Yes my Shunt that I have only had since March is obstructed. This means more surgery. More Brain surgery. I am real thrilled about that.

I will be going to Baltimore to Sinai Hospital to have Surgery. I will have my consultation on Wednesday July 29 with the Neurosurgeon and then have the actual surgery on Friday the 31st. They will first start by looking in the abdomen at the tubing there, and then move on to the head/brain where the valve and shunt are.
I will be spending two days in the hospital and then at least two more days in the Baltimore area before they will release me to head back home. From there I will recover at home before heading back to Baltimore for a post-op appointment. I should expect a 4 to 8 week recovery time, just as before.

Whew did you catch all that.

Wes is going to be able to be with me the whole time (thank you very much FMLA) and Mom and Dad will be coming up to Baltimore on Thursday and leaving on Sunday.

To say that I am not nervous, scared, worried would be a lie. But I can say I am comfortable. What, you say does that mean?

I am comfortable because I have to be. For my own sanity and those around me.
I have no choice but to be comfortable.

But is that all that is/has gone on? Oh heck no.

Now I feel at this point I can let you in on something because
#1 it’s all cleared up now
#2 It was not as bad as first though
#3 No one was ever in danger of contacting it from me as I made 1000% sure of that.

I noticed about a little over a month ago I have a few pimple raised like bumps on my inner arm. Right about the area where an I.V. had been. (Hmmm, I bet some of you can see where this is going) At first I did not think much about it but it just did not go away. Then, to my dismay it started to ooze a little (sorry if you gagged a little there) So I went to the Doctor, fearing the worst.
They looked at it and immediately said it’s probably a Staph infection and at worst it’s MRSA. Lovely, just lovely I think. So they took a wound culture and sent it off. Because it would take three days to get the results they went ahead and started treating it as if it was MRSA.
Lucky or Unlucky for me, depending on how you look at it….it was not MRSA but was a Staph infection.

I actually should not be surprised that I had one, being as how many times since January I have been in the hospital.

Let me just say that during this past month I have never washed my hands and arms as many times as I did then. I have also never gone through as many band aids as I did then. But yes, my fellow public was kept safe so that is what counts.

That must be all right? Wrong……Don’t you people know me better than that yet?

I loathe going to the Dentist. I would rather give birth seven times without an epidural than go to the Dentist. Because of that I avoid the Dentist like some people avoid a bill collector’s telephone call.

For the last several months I have noticed a slight..and I do mean just a teeny tiny slight pain in the left side of my mouth. Nothing to bad, and does not last to long. So why worry about it right?....wrong…..

It came to a head, screaming and raging its big ugly head Monday night. And I think it laughed as it watched me walk into the Dentist office.

The source of pain is a tooth that I had a root canal done on in 1998. After the Dentist does his examination and mops of the floor because of my panic and sweat , just kidding, he determines that the tooth has now cracked and cannot be saved. It will need to be extracted.

Say What!!!!!

For the love of Pete, can’t a girl get a break? Of course not when the girl we are talking about is me.

Extraction. what a really ugly, fowl word.

Basically they take fancy pliers and the jaws of life and twist the no good tooth right out of your gums.

Fun times kids, Fun times!!!!

That was today’s adventure….me versus the jaws of dental life.
The Jaws Won…

I was told I should probably expect some bruising on my face since when they tried to pull the tooth out it cracked in half and then they had to REALLY dig that sucker out.

Sigh…..

So here I sit with Vicodin , Ice Pack and a swollen jaw.

Oh yeah, and one heck of a headache. But that’s just everyday life for me know.

So after I have my Surgery in Baltimore (several weeks after actually) I will have to go back to the dentist to have an implant for that stupid tooth.

So here we are. All caught up. For now at least.

10 Surprising Reasons your Stressed…Give me a break….I know all 100 reasons why I am stressed

The Rules....Doh!!!

2009-06-28T13:34:00.000-04:00

The Rules….Doh!!!

When Piper was little, two years old to be exact, we had a horrible time getting her to go to bed. Better yet, we had an even harder time getting her to stay in bed. So we came up with rules for bed time. They where simple, she could understand them, she could repeat them.

No talking, No singing, No playing, No getting out of bed….

For the most part it worked.

The world is full of rules, like it or not.

Rules for driving a car, rules at work, rules in a home owners association.

Rules, Rules, Rules….like it or not that’s the way it is.

Starting from the time we are born there are rules.

The reason I bring this up is because there are rules for blogging too. Yep believe it or not there are. But my goodness I think some people loose all sight of this when they start to type.

Now granted there is not a “set standard of rules” but I just like to call it common sense.

I was reading a blog and this person was so distraught that everyone was mad at them for what they had posted on their blog. So of course I had to go back and see what they put. OMG!!!! The blogger had posted personal details of other peoples lives, not there own….Wow….no wonder there friends were upset…..

Some general rules of blogging, (As I see it of course)

-Don’t use real names of others unless you are talking about them in the highest regard and even then think about it long and hard

-Never, and I mean never talk about your ex’s- I don’t and never will.

-Never talk about arguments with your spouse, family, friends, coworkers…it’s just in bad taste.

-Be bold with your opinion but wise with how it is worded

In general as a golden rule…..

Never write anything down you would not want the whole world to see

The Vrdict is In

2009-06-19T19:02:00.000-04:00

The Verdict is In

Shunt Obstruction….

Yep…just what I feared it would be.

Dr. Williams is 100% sure it is a partial shunt obstruction and almost 100% sure it is a total shunt obstruction.

So what this means is Surgery.

He is referring me to the Chief of Neurosurgery at Sinai Hospital.

It is not a matter of if I will have surgery it is when.

Basically, they will start in the abdomen and look at the tip (end) and see if it is blocked there. They may need to reposition the end of the tubing. Regardless of what they find there they will also look at the valve (brain) end of the shunt. Dr. Williams has a strong suspicion that the catheter here is blocked and will need to be replaced.

Oh boy!!!

To avoid multiple trips to Baltimore we will arrange a consultation with the Neurosurgeon the day before surgery. I will spend approximately two days in the hospital and then a few days after in Baltimore just to make sure everything is going well.

I should expect a call from the Neurosurgeons office this coming Monday or Tuesday to start arranging times and dates.

Wheww…..What a ride….what a ride…..

Still trying to wrap this latest development around my head.

Brain Surgery again……sigh

Baltimore for Testing

2009-06-19T14:54:00.000-04:00

Baltimore for Testing

So back to Baltimore I go…this time with Mom.

Boy that is one tough ride. Between the construction and D.C and Baltimore traffic whew!!!! Now, yes I do fly for free but sometimes it is a hassle but driving is a hassle to. Pick your poison.

Mom and I stayed at the Radisson and it was very nice. Our room had Sleep Number Beds and to tell you the truth, I don’t see what the fuss is all about? Overrated is the word that comes to mind, but that’s just my opinion. We had a great dinner at Crossroads and then headed to bed.

The hotel was situated in a shopping complex with stores such as Talbot’s, J. Jill, Chico’s, Jean Pool, Pied Piper, and Williams Sonoma so needless to say Mom and I had no trouble killing time before my two o’clock appointment.
The only issue I was having (besides my head) was that I had myself so worked up I was hot as hell. I felt like I was roasting!!! Even though it was rainy and cool outside. So we headed over to Sinai and up to Radiology.

Check in went ok..not as smooth as it should have been, but that’s a long story. But thanks to the wonderful lady at registration we got it all straight. I must say she was absolutely delightful and had me at ease in no time.

Another great thing at Sinai is that they let my Mom go back into the X-Ray/Scan room with me and stay the entire time!!! My Mom is my rock so this was the cherry on the top, so to speak.

The Nuclear Medicine Doctor got me all set up and we waited for Dr. Williams to come in. He made his grand appearance and off to the races we went.

First off he has to shave some hair around the shunt area. Seriously I think….Seriously. Pretty soon here people I am going to run out of hair to cover up all this shaving business!!

Next he cleaned the shunt area and then used a numbing cream. Now for the fun part. The needle. Actually, at this point in my life I have been prodded, poked and stuck so many times it really does not bother me anymore. Yea Right!!! This needle went into my head, well actually into the shunt reservoir. To make this even more fun (like it could be) it took three times to get the needle into the right place. Ouch!!!!

So after the radioactive die is in he has we turn my head back and I lie still for twenty minutes. The entire time I have to lie still. Not hard, not painful. I talk with Mom and listen to the Nuclear Medicine Doctor talk to us about his growing up in Kenya.

After the twenty minutes is up they have me sit up for ten minutes. Hmmmmm. Then I lie down again for another round of imaging of fifteen minutes. After that round they decide they want images from the side view. Hmmmm. Ten minutes of those images.

They let me go to the waiting room after that while they page Dr. Williams. At this point I have no idea what the results are. I just know I have a horrible headache and am ready to hear something. So the tech comes out and I think she is going to tell me that Dr. Williams wants to see me but no….he wants ten more minutes of imaging. This is when I know something is up.

After that round Dr. Williams is there and we look at the results together.

Sighhhhh…….Sighhhh….

This is the Sigh heard around the world. Not really..but you get the drift.

As usual, with me anyway..If you can’t go big, go home.

The images show very little if no flow in the first 20 minutes. After I sat up for ten minutes the die did move some, but not much. This pattern continued through each continued round of imaging.

They never saw the die leave the tubing and exit into my stomach. FYI, it should have easily done so within ten minutes in a normally operating shunt.

AGHHHHHHHHHHH!!!!!!!!

So where do we go from here??? Good question my friends.

This test could indicate one of two things or both
The shunt is obstructed/blocked
The ventricles in my head have collapsed onto the valve and are causing low pressure and over draining

He did not admit me to the hospital for IPC monitoring because he feels that the shunt may obstructed (which this test is mostly showing) the results would not be valid and it would be pointless to but me through that.

So, he wanted a few days to process the information and also consult with a Neurosurgeon and see what the next best step would be.

What could that be? Well anything from simply adjusting the shunt setting and seeing if that helps to surgery to explore if there is a blockage in the abdomen or brain.

I have a phone conference scheduled with him today at four o’clock and I am very anxious to see what he has to say.

Now it’s just a waiting game and looking at the clock constantly.

I am so thankful to have found a Doctor that is really interested in finding the cause of the problem and finding the solution. I have said it before and I will say it again. Intracranial Hypertension will always be a part of who I am, but I will not let it be what defines me.

“Live your life crazy, and love every minute”

Random Thoughts

2009-06-18T21:43:00.000-04:00

Random Thoughts

Random Thoughts…You know you have them. We all do.

I like the saying “I’m not Cruel, I just say what everyone else is thinking”

LOL!!!

It’s the strange things in life that make you have those random thoughts.

For instance…

Just because they make it in your size, does not mean you should buy it.

God gave man knowledge and with that knowledge he made nail polish…look into it for your toes….your fellow neighbors will thank you.

If when you lift up your arms your shirt rises almost up to your chest…its time to retire the shirt.

Ahmmmm…I’m just sayin.

Caterpillers..Those suckers apparently will turn up anywhere. Wonder why?

Why is it that we associate Wine and Cheese together? Why not Wine and sausage dogs?

We drive on a parkway and park on a driveway…..Why o Why…that makes no sense at all!!!!

Whats the difference between normal ketchup and fancy ketchup?

How can something be "new" and "improved"? if it's new, what was it improving on?

If parents say, "Never take candy from strangers" then why do we celebrate Halloween?

If K.F.C Stands for Kentucky Fried Chicken, Why do they play sweet home Alabama on the commercials?

If there's an exception to every rule, is there an exception to that rule?

Why Does Pluto Live in a dog house, eat dog food, etc. but Goofy, who is also a dog, lives in a condo and drives a car?

See there are tons of random thoughts and random questions. Granted some are not so nice and some are just plain, well weird.

It’s a crazy world out there folks…somebody ought to sell tickets….heck, I’d buy one!!!!

By the way….I will update tomorrow night about my Baltimore trip and the lasted about my battle with IH. Just had to drop some humor for the time being.

Winner, Winner Chicken Dinner

2009-06-13T23:06:00.000-04:00

Winner, Winner, Chicken Dinner

Yes I actually came out of a Doctors appointment not wanting to go back in and body slam the Doctor. (to be fair, I am dealing with an illness that is rare and most Doctors have little knowledge about)

I had a huge smile on my face and a weight lifted off my shoulders.

Wheww..

It seems that I have finally found the right Doctor to treat me. He is an expert in the field of Intracranial Hypertension and boy does he know his stuff.

This is one of those appointments that are really hard to explain. Why is that you ask?

Well for one thing when is the last time you met with a doctor for a little over two hours and had his undivided attention? Yep you read that right. Over two hours.

The thing that really impressed me about him is that he said that we can’t just look at the shunt, we have to look at everything and see what other factors are going on that could be affecting me/head pain.

To start off with he had me tell him my version of events of what has happened since January.

That was a long and drawn out conversation.

Next was the neurological examination. Eyes, reflexes, cordination..ect….

Then onto the down and dirty…what to do with me now.

One interesting thing he did have to say was about the the surgery I cancelled…ya know the second shunt I was going to have placed… the surgery at Wake Wed.

He said that I “Don’t need two exhaust systems” I kid you not…his exact words. LOL!!!! Why in the hell could he have not told me that over the phone earlier, well we will never know.

He feels that yes I do have Intracranial Hypertension and it is not under control. Why…well that could be several reasons.

#1- I could have a blockage of the shunt. When he looks at my CAT scans he sees that my ventricles on the right side of my brain (the side where the shunt is placed) are much smaller than the right. This may be an indication that the ventricles have collapsed onto the shunt valve. Also, because I have had three abdominal surgeries in the past I am at greater risk for lesions and adhesion in the abdomen. This could mean the end of the shunt tube has adhered to one of them and it should be free floating.

#2- I have trouble sleeping and snore…also while in the hospital previously my family noted that I would stop breathing for seconds then gasp for air and continue breathing again. Signs of Sleep Apnea…which according to him have been and can be attributed to Intracranial Hypertension.

#3- Which I still don’t understand is that I may actually be having an overdraining issue, a low pressure issue. I won’t go further into that because I really don’t understand it myself.

Overall it was an overwhelming appointment…but in a good way! I have never had a Doctor seem so interested in the whole me. He talked about everything from the shunt, my weight, to my vision disturbances. It was refreshing.

He wants to help; he wants me to be back to the real me. He is ready to do what it takes, whatever it takes to get there. Sighhh…. What relief….I cannot even begin to explain it.

He was so down to earth, so easy to talk to, to real. He listened, he asked questions. He has a plan. He is not about to throw the towel in.

So what is the plan you ask?

I will head back to Baltimore on Monday for my appointment on Tuesday. On Tuesday I will have a Shunt Patency test. This test will show if I have a blockage in my shunt. They will take a needle and inject die into my shunt and watch the flow.

If there is a blockage, well we shall go from there….that would mean surgery.

If there is no blockage seen then I will admit to Sinai hospital for ICP monitoring. They will insert a monitor into my brain. This will monitor the spinal fluid pressure in my brain for 48 hours.

Whewww did you catch all that.

So that’s the wrap up, for now.

Oh what a ride it’s been, but life is like a ride isn’t it…It has its ups and downs and levels out at times. But we all just hope we get to ride the ride of life for a long time.

The Buffet Line of Life

2009-06-10T19:15:00.001-04:00

The Buffet Line of Life….

Ummm yea….too many choices

Which one to choose… the fish, chicken, meat, liver…?

Life is like a buffet line..no really it is….let me tell you why.

When you go to a buffet there are a zillion choices of food items. They all look wonderful. Right?

From the salad bar to the dessert bar your tongue starts watering…come on you know it does. You know you just want to grab a huge spoon and start dipping into everything right there with wild abandon..opps that’s my gluttoness dream and not yours…

Well how the sam hill is life like a buffet? Well its all about options and choices and having to choose. It’s nice to say you want everything on the buffet (life) but in actuality we have to choose bits and pieces off the buffet (life) and pray to God that we make the right choices and don’t get heartburn in the process….

Sigh…sometimes…I think I look too deep into things. This may be one of them.

So this is going to be a long blog entry so grab your vodka, beer or coffee…whatever your drink of choice is and settle in and don’t say I did not warn you…OK? OK

So my Neurosurgeon visit….OMG what Drama….

Let me say that I do love my Neurosurgeon…he is wonderful and very honest. He comes in and basically says that he does not really know what to do with me. He has only treated 4 patients with my disease and I am the 4th. He also says that he is so sorry for all the pain I am in. (Yea, me too) He says that the only thing he can do is to place an lumbar peritonerial shunt (LP) . At the same time he cannot guarantee that this will do any good. He cannot say that this will rid me of the daily pain I am in. OK then…

Pause for dramatic effect…

So……What does he say…. He says that if I want he will do the surgery.

Yes, you read that right it was not a typo. He will do the surgery if I want.

Wooooo….Hold on here..You have got to be kidding me. My Neurosurgeon is telling me that if I want he will do surgery. Hmmmm. No pressure.

So, we leave and discussion begins.

Lets face it people, I am a Purchasing Manger. I deal with China and Germany not Medical lingo..what the hell do I know….

I will save you all the details and cut to the chase.

I have decided to have the surgery. After much debate and consideration the benefit outweighs the risks. Also, if I don’t have the surgery I will always wonder if that would have been the “fix” for me.

As of now surgery is scheduled for Wednesday at Wake Med. I will be having this shunt placed in my back and will spend at least one night in the hospital.

HOLD UP>>> WAIT A MINUTE>>>>>>

That’s way to easy….Right?……Right.

Life is a Buffet…and it’s all about choices….

Texas Toast or Muffin…you choose.

Life is never easy and why in the Sam hill did you think this would be a smooth operation? No pun intended.

What you don’t see is the back story (per say) that is going on in my life…..

I have a great friend, Michelle that I have never met in person. LOL. We met on a chat board for Intracranial Hypertension and then became friends on Face book.

She posted a link for an upcoming talk show on Intracranial Hypertension on www.blogtalkradio.com with Dr. Tanne. who is the founder of the Intracranial Hypertension foundation. I, in turn also posted the link. My wonderful mother listened to his show and decided what the hay, I will call him.

Guess what? She spent about an hour on the phone with him.

He recommended a Doctor in Baltimore that specializes in Intracranial Hypertension. Dr. Michael Williams. He is with Sinai Hospital in Baltimore. She called, talked to his nurse; she said send your record and we will see if he accepts you.

So, I, the ever pessimistic person hold no faith in this. After the Cleveland Clinic disaster and being turned down by the Mayo Clinic who could blame me.
But as I am preparing for surgery, I get word that Dr. Williams wants to talk to me via phone on Monday. Mind you that on this day at twelve o’clock I had my pre op phone call with Wake Med. I was all set to go with surgery.

Long…long story short and 45 minutes later talking with Dr. Williams he wants to accept me into his practice. But he will not come right out and say that I do not need to have the surgery that is planned. He does however; place a lot of doubt in my mind.

So after much thought, agony and tears…. I decided to cancel the surgery at Wake Med…. Was it the right choice…I don’t know.

What I do know is this.

On June 11th I will meet with Dr. Williams in Baltimore for a clinical assessment.
The following Tuesday I will head back to Baltimore for a Shunt Patency test. (This is where they inject die into the shunt reservoir and watch the flow to see if there is a blockage)
Following that, I will admit to Sinai Hospital for a two night stay and have an ICP monitor placed ( this is placed into the current shunt/brain) to measure the pressure for 48 hours.

After that…I just don’t know.

It has been a crazy ride so far and to tell you the truth, I want a break!! I am all for adventure but I don’t think this is what I had in mind.

But I will say this. Never give up trying to find information. You just never know where you will find it. I signed up on a great website/chat forum and found a wonderful group a people going through the same thing as me. I may have never met any of them in person but it feels as if they are always right there with a shoulder to lean on.

And never be afraid to call the experts in the medical field. What’s the worst that can happen? They don’t call you back? But there are those times were medical professionals like Dr. Tanne really care to help everyone they come in contact with. His last words with my Mother were for either of us to call back if we had any questions, and I believe he sincerely meant it.

Lastly, I wrote once about Great Expectations and how I got burnt on them…Sigh. I am really hoping and praying that Sinai and Life Bridge Health do not turn out to be another Cleveland Clinic. But the difference this time is he saw all my records before hand and had to except me as a patient.

So I just have to have a little faith and trust. Not necessarily Great Expectations, because I have now realized that for now those can never be met as there is no cure for Intracranial Hypertension. Maybe one day but for know I just need to learn how to deal with what has been handed to me.

I will try to up date a little better and after each appointment.

So may we all smile a little bigger, laugh a little longer and hug a little tighter….

Life is a journey that takes us many places. Life is an unexpected blessing.

Life can throw you a curve ball and it can happen in a second and it can change your life forever.

Life is short…Pray Hard.

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

2009-05-24T00:49:00.000-04:00

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

Crash and Burn

2009-05-11T22:23:00.000-04:00

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!

As Good as It Gets

2009-05-10T01:13:00.001-04:00

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.

A Happy Place..A Laughing Place...

2009-05-03T22:32:00.000-04:00

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.

Wasted Away Again In...Oh Wait..Never Mind....

2009-04-23T18:53:00.000-04:00

Wasted away again in…oh wait…never mind…

We are supposed to be at a Jimmy Buffet concert tonight.

Singing at the top of our lungs and having a great time….but we are not.

There are several reasons why we are not.

Very good reasons. Reasons that just plain suck.

But it kind of worked out for the best because I would not have been able to enjoy it at all. Let me tell you why.

Lovely Intracranial Hypertension has struck again. The B!@#h!!!!! Ummmm you get the picture.

I started having whooshing in my ears again. It’s a sound in my head of being underwater near a pump. It at times sounds like an AK47 constantly going off. It’s a great indication that my pressure is up.

Also last Thursday I had a full Field Vision test that showed some Edema in my right eye and also some mild vision loss, not good. I am occasionally experiencing visual disturbances which are enough to drive a person insane. My eyes don’t seem to want to focus on anything and my peripheral vision is lost for minutes at the time. These are not good things. These are signs of high pressure, things my shunt should not be allowing to happen.

The results of the above test where sent to my Neurosurgeon and he wanted me to have a Lumbar Puncture done (also known as a Spinal Tap) Oh yes, just great…..sigh…..

So of course he wants the Neurologist to do this. If you all remember I was (key word was, we will get to that later) seeing a new Doctor at Duke. Well to make a long story short, I was not able to get a return call from their office after repeated attempts.

So I did what I swore I would never do…..I called Dr. Idiot…yep….Don’t burn bridges kid’s and I am so glad I did not.

What’s so great is that I called them on Monday, got an appointment for consultation on Tuesday and they were able to schedule the lumbar puncture for first thing Wednesday morning. Whewww…..

Now keep in mind I still have not heard anything back from Duke and I have been calling repeatedly. There is something really wrong about that. He may be a great Doctor, but if you cannot get calls back (not even from a nurse ect..) then as a patient that does not work. Granted it may not be the Doctors fault at all, he may not know. It could be the staff; it could be they are too large. Well, I take that last part back because Dr. Idiots practice has over 20 Neurologist and is huge so that is not a good excuse. Basically, the way Duke handles their patient relations is horrible. It does not work for me.
Well enough about that.

So back to the lovely Lumbar Puncture….

It was not fun. How could it be?

You lie on your side and they numb your back with a shot (that hurts like hell) then they take a hug needle and place it into your spine. The first thing they do is take an opening pressure reading. This is the number I was looking for. Mine was high and it should not be. Then he takes fluid off. This is the part that makes me question my judgment for even waking up that morning. In the process of taking fluid off, he is also lowering my pressure which will hopefully relive some of the awful symptoms I am having. Before he is done, he takes a closing pressure reading.

All done.

Then there is the aftermath.

Lucky for me my previous two LP’s were when I was already in the hospital, I was sedated, on heavy pain medication and could not have told you what day it was.

This time, OMG!!!!!!

The positional headache is a nightmare. I cannot stand or sit up for more than 10 minutes at a time without my back feeling like it will explode into my feat. Upon standing I get what feels like a head rush. Imagine what it feels like when you have eaten ice cream too fast, that’s me right now.

So, I called this morning to the Doctor, (like I was told to do if this happened as I might need a Blood Patch which would rid the symptoms immediatly) only to find out that because I have a shunt I cannot have a Blood Patch.

You have got to be kidding…..sighhh..there is that little black cloud….

So here I sit…I mean lay….because that is all that I can do for now.

I will apparently just have to wait out this positional headache. Unless my Neurosurgeon feels there is something else they can do. But wouldn’t you know he has been in surgery all day so my Neurologist has not been able to talk to him yet!! But that’s okay because these two Doctor’s have been great.
Yes, I just said Dr. Idiot was great. And now he needs a new code name. He was actually friendly. Hmmmm Maybe Doctor Moody or Doctor Surprise would be a better way to refer to him. Whatcha think?

So on I go into another day; head held high and chin up.

Baby Got What????

2009-04-16T01:13:00.006-04:00

Burger King Ad

Click the link below to view:

http://www.youtube.com/watch?v=h5X4TSbGreA

All I can do is just shake my head in disgust.

Really, come on. Sir Mix A Lot for a Kids Meal Commercial!!!

Give me a break!

Now I am not a helicopter parent by any means nor do I shield my children from the world. Hell, they watch Survivor and have been known to catch a glimpse of Trauma- Life in the E.R.

But there is just something really wrong about this. I am not sure what parts skeeves me out the most. Yes, I just used the word skeeves, I kinda like it, even though it's not a real word.

1. Where he takes a ruler to measure her "square butt"
2. The leveler on the square butts
3. When the "king" says "Booty is just Booty"

Maybe number three has my vote.

To be fair, my nine year old and six year old have seen this commercial numerous time and have not so much as flinched an eye about it. Maybe they have watched MTV and I don't know about it....GASP!!!!! LOL

Or maybe it just says a lot about the world we live in...hmmm that could be it.

But it still skeeves me out to no end.

Enjoy The Silence

2009-04-11T00:28:00.000-04:00

Enjoy The Silence..

I spend a lot of time alone..not by choice, it just unfortunaly works out that way.

Wes works as a commercial pilot and is gone a lot. My two beautiful girls are with their Dad (my first husband) every other weekend. There is a lot of time for silence in my world.

Sometimes the silence can be like thunder. "-- Bob Dylan

Great souls endure in silence.---Fredderick Schiller

Silence…..Have you ever stopped to think about it…stopped to take the time to listen to it…silence

Sometimes silence can bring out the worst in us. It brings out irrational fears of things that go “bump” in the night. When in truth it’s just the water heater turning on.

It brings out the child in us as we hum a silly song to try to make noise reappear, even though we know it will not.

Silence, can make you think….it makes you think a lot.

Of good times, of bad times.

It brings back memories. Some that you wish would just stay away and others that you wish you could hold onto forever.

Silence…..

I sit sometimes and remember when my girls where little and the sound of the pitter patter of their feet running across the floor. I remember the small fits of giggles they would burst into for no reason and smile. I remember hearing Dora the Explorer going full blast on the television.

Silence gives you a lot of time to remember things. Time to reflect.

I sometimes sit and imagine what these two beautiful creatures will become. I imagine their lives and families and children. Silence gives you time to ponder the future.

Silence is a very stoic word when you really think about it.

It is a very lonely word if you want my opinion on the matter.

I sit in silence tonight at the beach with only the sound of the waves and the wind in my ears. I sit here and think about a lot of things. Worry about a lot of things.
In silence sometimes we find more questions… sometimes we will find answers….sometimes we just find that we need to enjoy the silence

One Step Forward, Five Steps Back

2009-04-08T23:47:00.000-04:00

One Step Forward, Five Steps Back

There seems at times to be a little black cloud that likes to follow me around… I think its time I name him…any suggestions?

Just when you think your headed in the right direction….nope your not.

Oh well, some progress is well…progress…right? Work with me here.

I went to Duke and came home hopeful well that got squashed pretty quickly.

There’s that little black cloud.

I started the Verapamil and to be honest the daily headaches are still around and I have not seen much difference but I still need to give that some time.

I have had the utmost pleasure (insert roll of eyes) to try both rescue medications and I do see a difference in them and prefer one over the other. So that is a good thing.

Now on to the Seroquel. Everything I have read and been told said to watch out!!! Just a little bit of that stuff will knock you out quick!!! Be close to the Bed!!!! Just 25-75 mg of this stuff will send you to lala land!

Well you know me, the ever overachiever…..The high tolerance overachiever at that.

I was prescribed 100mg tablets and told to take 1 and then if that did not work (aka- knock me out), take a 2nd and then if that did not work take a third. Well guess what?

It took two of those bad boys to even touch me…..sigh…and even then it was not a deep sleep that I was hoping for. A sleep that makes you not aware of the feeling that a 400 pound grizzly bear is pouncing on your head. A feeling that your eyes will burst into flames at any second. Oh well, that’s how my past Sunday was spent.

And the Little Black Cloud Continues…..

I had an appointment on Monday with my Neurosurgeon. Just a follow up. Guess What?

My Shunt likes to change its settings all by itself……..Nice
-side note- only a highly powered magnetic should change the setting of the shunt
valve.
Here I am the overachiever again….this time with the Shunt….Nice…

I asked the Doctor why the shunt is changing settings and his answer…..He has no idea..

Yep…No idea. So I asked the one question he, I and nobody wants to hear or answer
“Could the valve be faulty/bad?”

Silence in the exam room….I swear you could hear a pen drop.

He said “ We don’t want to talk about that yet, let’s just watch it and see what it does”

Now, I am sure that he does not want to talk about a faulty valve and hell neither do I.

Because…Hello People that would me…Surgery…cutting into my head yet again.

Yep..Hello Little Black Cloud….Please go away

So he reset it and off I went into the world once again…

That’s all that’s going on right? Wrong?

My vision went wacko today….lovely, just lovely…..

My left eye decided to play the game of lets not focus on anything today. I did not think that was a fun game at all. So back to the Neurosurgeon we went to just check and see if the shunt setting had changed. Thank goodness it had not. But the eye thing is a little worrisome. I do have an eye appointment next Friday to have a Full Vision Filed Test. This will check to make sure I do not have any pressure build up in the eyes or Papidillia.

Sigh……..One step forward, Five steps Back and a little black Cloud.

What was life like when my head did not hurt? I don’t remember anymore, I really wish I did.

My Appointment at Duke

2009-04-01T21:43:00.001-04:00

My Appointment at Duke

One thing about me, if you already did not know, is that I am an eternal pessimist.
I see the glass half empty, the pack of crackers half gone before you even open them. In fact I have been known to say “Always expect the worst, that way you will never be disappointed just pleasantly surprised”

Now, is that the correct way to see things, probably not, but hey that’s who I am.

Going to the appointment today at Duke I was determined not to have any expectations, especially after the appointment I had at the Cleveland Clinic in Florida.

So let’s regroup real quick ..yes folks this makes the third, yes third Neurologist that I will have seen since the end of January.

The first, lets call him Dr. Idiot….hehehe. He felt that after the diagnosis of Intracranial Hypertension there was nothing more he could do and that migraines were no longer part of the equation. We parted ways with a mutual firing of the sorts.

The second, will call him Dr. Feel Good..yep that sums him up. This was the Doctor at the Cleveland Clinic in Florida. Now don’t get me wrong he was a wonderful Doctor and actually thought that I could still be having some migraine issues. So why Dr. Feel Good? He emphasized a lot about stress and dealing with that. Mind over matter was his idea. He is the one who recommend the Pain Clinic at Duke.

So that brings us to today….yes today. My no expectations day….well maybe just one.

I did tell Mom that if this Doctor even so much as asked “Why are you here” I was going to leave….but first roll my eyes and say “Duh, I’ve had a headache everyday since January 31st of this year…everyday”

No folks, I was not going to do that, I am not that way. But isn’t it fun sometimes to imagine ourselves being that bold.

We had virtually no wait once we arrived. Wow, that’s a good start.

Met with a nurse and she took the usual information. I always like the part when they ask what medicines you are allergic to. LOL, Because for me its not so much that I am allergic to any medicine, it’s that some just don’t sit well with me.

Take for instance Ambien

Now Mom calm down (I know you are reading) I’m not going to share my experience with the evil drug Ambien, not now, not ever…Well maybe one day if I ever have to much to drink and you ask me to tell it. Let’s just say I bet if you Google Ambien stories you will laugh until your sides hurt over the stories people share about this. Trust me.

After the usual nurse Q & A we head back into the room and I just know it will be forever before Dr. C makes his grand appearance. But no, not even five minutes pass and he is in the room…..Impressive.

And he gets right down to business… At first I am a little put off by this, but he is wonderful.

And now here are the highlights:

-The Lumbar Puncture that I had: the levels were high enough that they were almost to the
point of being in danger of vision loss.

-Patients with Intracranial Hypertension can also and most times have issues with
migraines and these need to be treated as two separate issues.

-My MRI and MVR show no signs of anything life threatening.
no further diagnostic testing will be done for now.

-I need to be on a preventative medication (taken everyday)
since I am already taking Topamx he also added Verapamil

- I need to have an abortive medication ( medicine taken at first sign of migraine)
he gave me a sample of two to try Relpax and Maxalt

-I need a rescue medication (medicine taken when the previous does not work, this
medicine is intended to knock you out) He prescribed Seroquel.

Most importantly to me he said that if these don’t work there are other options to try and that we will continue until we find the combination that works.

Whew…what a relief….. A neurologist that understands Intracranial Hypertension, and understands the pain that I am in everyday of my life. A Doctor that is not going to give up on me on the first try.

So why did it take three try’s at a Neurologist to find one that fits for me you ask?

Because Intracranial Hypertension is a rare disorder.
Because not every Doctor is right for every patient.

No, this Doctor did not have a magic answer, shot or medication to get rid of these daily headaches.

Yes, I am happy with today’s appointment and feel like someone is finally listening and understanding what I am going through and wants to help.
I don’t expect to have these headaches gone overnight, but wouldn’t that be nice.

I do have faith and hope that in time life will be back to normal or at least what I call normal.

I will follow up with Dr. C in four weeks and I have my fingers crossed that this combination of medication will provide some relief. But, if not at least this time I know he has more ideas up his sleeve, and I am okay with that.

“The human body experiences a powerful gravitational pull in the direction of hope. That is why the patient’s hopes are the physician’s secret weapon. They are the hidden ingredients in any prescription” Norman Cousins

-

When Life Hands You Lemons

2009-03-27T00:59:00.002-04:00

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......

2009-03-22T17:46:00.002-04:00

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...

2009-03-21T14:58:00.004-04:00

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

2009-03-20T20:28:00.003-04:00

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

2009-03-19T05:23:00.002-04:00

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!

2009-03-18T10:06:00.004-04:00

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

2009-03-17T08:51:00.007-04:00

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

2009-03-16T19:40:00.008-04:00

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

2009-03-16T16:13:00.004-04:00

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

2009-03-16T15:32:00.004-04:00

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....

2009-03-16T01:53:00.002-04:00

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????

2009-03-16T00:09:00.004-04:00

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