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.
Showing posts with label Medical. Show all posts
Showing posts with label Medical. Show all posts
Wednesday, September 2, 2009
Thursday, August 20, 2009
In the Hospital
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.
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.
Wednesday, August 19, 2009
Not feeling well, Headed back to Baltimore
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.
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.
Sunday, August 9, 2009
Fred Flintstone
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.
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.
Saturday, July 25, 2009
Family Cruise- Good for the Soul
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.
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.
Wednesday, April 1, 2009
My Appointment at Duke
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
-
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
-
Thursday, March 19, 2009
Great Expectations
Great Expectations…
Ever plan to go see a movie because the previews looked soooo good , get all hyped up, go see it and come out of the movie theater going “What the ???? , that was horrible”
Ever go out to eat and see something on the menu that looked like it would be the most amazing meal of your life only that when you order it, it’s only so-so and you can’t find much good to say about it but can’t find much bad to say about it either.
These are what we as people build up as Great Expectations. This is what I did with my appointment in Florida at the Cleveland Clinic. I had Great Expectations. I just knew, just knew that this was the be all end all of where I needed to be when it came to IH.
I was wrong.
I did not post yesterday because well, frankly you would not have wanted a rambling mess and to be honest I was not sure how I really felt about the appointment yet.
So I had some time to talk with Wes, and we talked about the appointment and I did realize that yes some good did come out of it. My Great Expectation however, were just not met.
In a nutshell…
They put me on Diamox and back on Topamax
This could still be Migraine related as well as IH
I have to “learn” how to deal with the possibility of having a headache everyday
He agrees with the diagnosis of IH
Whoaaaa What was that?… yep you read that right. I may have to learn how to deal with a headache everyday. Ummmm, that is not what I wanted to hear. Now I could learn how to deal with eating a Twix bar every 20 minutes but a headache everyday…that’s a little much.
Of course there is more of the appointment but hey this is a blog and I am only going to share and bore you with so much…..
Overall….He was a nice Doctor, he had some new perspective, he had some new avenues for us to follow.
Going back ….no
Great Expectations….we all have them. We take an idea, a place, a person, or a thing and build it up so big in our minds . We make this “thing” so perfect, so wonderful that in reality that “thing” can never be that….well…..great.
Great Expectations…that’s what I had for the Cleveland Clinic….
Now I leave Florida and head home. Not dragging my head in despair, not crying or saying that was a waste of time…But with my Great Expectations in check….and ready to place them somewhere else.
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.
Monday, March 16, 2009
And the Rest of the Story Part II
Okay people you are about to be bombarded with blog post so don't say you were not warned....
Okay?.....Okay....
I have some exciting news, well exciting to me anyway so just sit there and pretend to act excited...Deal?...Deal
Continued form last post
We headed into Rex on March 6th and I got prepped for surgery. I was a ball of nerves...Hell who would not be.
Lets face it I am letting them cut open my head..willingly
We head into the operating room and they give me those nice sleepy meds.....zzzzzzzz I go
When I wake up what do you think my first reaction is?
Come on now, play along...guess
I looked around for someone I knew........nope
I tried to stand up...nope
I tried to talk...nope
The correct answer would be, I felt my head and realized that the Doctor has shaved, yes shaved part of my hair. EEKKKKKKKK!!!!!
Now in retrospect, it is a totally vanity thing and I have very long hair and unless I wear it down, which by the way aint gonna happen, so don't expect it, you cant tell that I am missing a three inch wide section of hair.
Now why it never dawned on me that he would have to do this, heaven only knows. But the hair thing is a mute point know as we all know it will grow back and like I said, none of you are ever, I mean EVER going to see the shaved head side of me, trust me its not a pretty site.
So I was placed in step down ICU and that was another shock, what the heck.
I think I still had not come to terms that this was Brain Surgery. I still don't think I have.
I was released the next day and was hopeful that all the pain in my head would be gone.
Right?
Wrong?
Everyday since the shunt placement my head has hurt. Sometimes it only hurts a little others it feels like Fat Albert is jumping on it constantly.
Everyday brings new issues, new symptoms, new challenges....sigh.....
The shunt I have placed was put into my head. It almost feels (to me) like a golf ball has become stuck inside my skull. They then attached tubing to the shunt and ran it down my neck, past the collar bone and it end in my abdomen where the excess spinal fluid drain.
If you did not stop reading, or need a cold cloth, or just threw up a little, take a moment I will wait.
.
.
.
Okay wait over
The initial setting (from surgery) they put the shunt on was 8 (remember my initial pressure was 43 and normal is 20) and I was still having issues so I went in and had it adjusted.
Adjusted..what the hay, how do you have it adjusted.
Well , by George, it is an adjustable shunt. The Neurosurgeon has a device he places on my head and he can adjust the pressure up or down.
So I had it adjusted to 14-15 which now I fear is to high.
As of today my stitches are out of my head and my abdomen.
I still battle the head pain....daily
My ears fill like I am underwater all the time.
I am dizzy constantly, standing up or sitting down
My peripheral vision, down and to the left has now started to blur
The left side of my face is numb as it has been since the end of January
I don't sleep
My left side has pain that comes and goes
I have searing head pain sometimes that feels like a hot pan has been placed on my head
I have trouble with nausea and vomiting that comes and goes as it pleases.
So the shunt was not a be all end all fix and in fact a shunt is only 50% of the fix most of the time in patients.
I am now learning a lot and while the above seems scary and horrible I have found that others with my condition experience the same thing.
Now for the next post and some awesome, exciting news.
Okay?.....Okay....
I have some exciting news, well exciting to me anyway so just sit there and pretend to act excited...Deal?...Deal
Continued form last post
We headed into Rex on March 6th and I got prepped for surgery. I was a ball of nerves...Hell who would not be.
Lets face it I am letting them cut open my head..willingly
We head into the operating room and they give me those nice sleepy meds.....zzzzzzzz I go
When I wake up what do you think my first reaction is?
Come on now, play along...guess
I looked around for someone I knew........nope
I tried to stand up...nope
I tried to talk...nope
The correct answer would be, I felt my head and realized that the Doctor has shaved, yes shaved part of my hair. EEKKKKKKKK!!!!!
Now in retrospect, it is a totally vanity thing and I have very long hair and unless I wear it down, which by the way aint gonna happen, so don't expect it, you cant tell that I am missing a three inch wide section of hair.
Now why it never dawned on me that he would have to do this, heaven only knows. But the hair thing is a mute point know as we all know it will grow back and like I said, none of you are ever, I mean EVER going to see the shaved head side of me, trust me its not a pretty site.
So I was placed in step down ICU and that was another shock, what the heck.
I think I still had not come to terms that this was Brain Surgery. I still don't think I have.
I was released the next day and was hopeful that all the pain in my head would be gone.
Right?
Wrong?
Everyday since the shunt placement my head has hurt. Sometimes it only hurts a little others it feels like Fat Albert is jumping on it constantly.
Everyday brings new issues, new symptoms, new challenges....sigh.....
The shunt I have placed was put into my head. It almost feels (to me) like a golf ball has become stuck inside my skull. They then attached tubing to the shunt and ran it down my neck, past the collar bone and it end in my abdomen where the excess spinal fluid drain.
If you did not stop reading, or need a cold cloth, or just threw up a little, take a moment I will wait.
.
.
.
Okay wait over
The initial setting (from surgery) they put the shunt on was 8 (remember my initial pressure was 43 and normal is 20) and I was still having issues so I went in and had it adjusted.
Adjusted..what the hay, how do you have it adjusted.
Well , by George, it is an adjustable shunt. The Neurosurgeon has a device he places on my head and he can adjust the pressure up or down.
So I had it adjusted to 14-15 which now I fear is to high.
As of today my stitches are out of my head and my abdomen.
I still battle the head pain....daily
My ears fill like I am underwater all the time.
I am dizzy constantly, standing up or sitting down
My peripheral vision, down and to the left has now started to blur
The left side of my face is numb as it has been since the end of January
I don't sleep
My left side has pain that comes and goes
I have searing head pain sometimes that feels like a hot pan has been placed on my head
I have trouble with nausea and vomiting that comes and goes as it pleases.
So the shunt was not a be all end all fix and in fact a shunt is only 50% of the fix most of the time in patients.
I am now learning a lot and while the above seems scary and horrible I have found that others with my condition experience the same thing.
Now for the next post and some awesome, exciting news.
The Rest of the Story....For Now....
So how in the heck did I get here.....and how do I get back???
Well I can't go back but man I wish I could, life was easier before January 30th, 2009.
That’s the day my life really....well got complicated, to say it nicely.
I worked half a day, went to my mothers house, went upstairs, fell asleep and the pain just never stopped.
What’s funny is I even remember what I wore to work that day. I had on black pants, a yellow sweater and black boots. It’s funny how we remember those small details.
I thought it was another migraine...I thought I had been having them for about a year.
The kind of headache where you feel your eyes may explode from the light and all you can do is hide under the covers and hope for relief. Not to mention the vomiting and sweating that goes with it but I will spare you those details.
A few days later and a couple of trips to see my General Practinoer with shots of Nubain and Phenegran, the headache/Migraine pain was still there. Hmmmm not good.
With some gentle (well maybe not) prodding he referred me to a Neurologist as I had maxed out on Narcotic shots (three within a 1 1/2 week span).
The Neurogist, what can I say nice about him....well not much..Because isn’t it if you can't say something nice don’t say anything at all?????
He thinks I am having status migraines (migraines that last over 72 hours) he wants to put me in the hospital to receive DHE treatment (this is an IV fluid treatment that is given over the span of several days)
I agree to this......THREE TIMES!!!!!
Between the span of February to March I was hospitalized three times and given DHE treatment..
Needless to say it did not work.
I had an MRI, it came back fine.
CAT Scan .....fine
Blood Work...fine
Hormone Levels....fine
Rabies Test....fine....Just kidding....you have to have some humor right?
Nothing was working....At best I am in a blur, a time warp. The days go buy and I am on so many pain killers I can't tell you much.
I go home only to head back to Rex Hospital...I am worried, Wes is worried, my girls are worried, my family worries, heck the dogs worry but I think that’s just because they are afraid no one will show up to feed them at the appropriate time.
So as I lay in the hospital the Doctor on call for the Neurology office I am seeing suggest doing a spinal tap.
WHY??
Well why not... We have done everything else...lets rule out infection.
But what he finds is that my spinal pressure is at 43 YIKES!!!!!
YIKES....because normal is 20....
What I have is double and that is not good.
Two days later they do another spinal tap hoping the first reduced some pressure....
NOPEIt came back at 38.
The diagnosis Intracranial Hypertension or as it is also called Psedudotumor.
I, Wes, everyone ask what does this mean????
Short answer, I need a shunt to drain all the excess fluid off my head....NICE
I ask do I have to??? And I swear to you the Neurologist reply was "You must be delusional if you think you are not having surgery" Wow...that’s some kinda bedside manner for ya...at least he was honest....
So in numbness and dumbness I leave the hospital with a surgery date in hand...March 6th...
We shall get to the rest of the story tomorrow
Well I can't go back but man I wish I could, life was easier before January 30th, 2009.
That’s the day my life really....well got complicated, to say it nicely.
I worked half a day, went to my mothers house, went upstairs, fell asleep and the pain just never stopped.
What’s funny is I even remember what I wore to work that day. I had on black pants, a yellow sweater and black boots. It’s funny how we remember those small details.
I thought it was another migraine...I thought I had been having them for about a year.
The kind of headache where you feel your eyes may explode from the light and all you can do is hide under the covers and hope for relief. Not to mention the vomiting and sweating that goes with it but I will spare you those details.
A few days later and a couple of trips to see my General Practinoer with shots of Nubain and Phenegran, the headache/Migraine pain was still there. Hmmmm not good.
With some gentle (well maybe not) prodding he referred me to a Neurologist as I had maxed out on Narcotic shots (three within a 1 1/2 week span).
The Neurogist, what can I say nice about him....well not much..Because isn’t it if you can't say something nice don’t say anything at all?????
He thinks I am having status migraines (migraines that last over 72 hours) he wants to put me in the hospital to receive DHE treatment (this is an IV fluid treatment that is given over the span of several days)
I agree to this......THREE TIMES!!!!!
Between the span of February to March I was hospitalized three times and given DHE treatment..
Needless to say it did not work.
I had an MRI, it came back fine.
CAT Scan .....fine
Blood Work...fine
Hormone Levels....fine
Rabies Test....fine....Just kidding....you have to have some humor right?
Nothing was working....At best I am in a blur, a time warp. The days go buy and I am on so many pain killers I can't tell you much.
I go home only to head back to Rex Hospital...I am worried, Wes is worried, my girls are worried, my family worries, heck the dogs worry but I think that’s just because they are afraid no one will show up to feed them at the appropriate time.
So as I lay in the hospital the Doctor on call for the Neurology office I am seeing suggest doing a spinal tap.
WHY??
Well why not... We have done everything else...lets rule out infection.
But what he finds is that my spinal pressure is at 43 YIKES!!!!!
YIKES....because normal is 20....
What I have is double and that is not good.
Two days later they do another spinal tap hoping the first reduced some pressure....
NOPEIt came back at 38.
The diagnosis Intracranial Hypertension or as it is also called Psedudotumor.
I, Wes, everyone ask what does this mean????
Short answer, I need a shunt to drain all the excess fluid off my head....NICE
I ask do I have to??? And I swear to you the Neurologist reply was "You must be delusional if you think you are not having surgery" Wow...that’s some kinda bedside manner for ya...at least he was honest....
So in numbness and dumbness I leave the hospital with a surgery date in hand...March 6th...
We shall get to the rest of the story tomorrow
What the heck????
I have this new thing in my life..I don't like it..I don't want it...
I now have to deal with it...
I have Intracranial Hypertension...I have to double check the spelling everytime I type it....
I have a shunt in my head....
My head hurts all the time....
No one seems to understand, least of all me....
So what the heck is all this??
I promise this will be the last boring stritly medical post I do...LOL
Taken from the Cleveland Clinic website
Pseudotumor Cerebri(Also Called 'Benign Intracranial Hypertension')
What is Pseudotumor Cerebri?
Pseudotumor cerebri literally means "false brain tumor." It is likely due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the subarachnoid space surrounding the brain
In other words my brain makes too much spinal fluid.
Taken from the http://www.mayoclinic.com/
Definition
Pseudotumor cerebri (SOO-doh-too-mur SER-uh-bry) occurs when the pressure inside your skull (intracranial pressure) increases for no obvious reason. Symptoms mimic those of a brain tumor, but no tumor is present. Pseudotumor cerebri can occur in children and adults, but it's most common in obese women of childbearing age.
When no underlying cause for the increased intracranial pressure can be discovered, pseudotumor cerebri may also be called idiopathic intracranial hypertension.
The increased intracranial pressure associated with pseudotumor cerebri can cause swelling of the optic nerve and result in vision loss. Medications often can reduce this pressure, but in some cases, surgery is necessary.
Symptoms:
Pseudotumor cerebri symptoms may include:
Moderate to severe headaches that may originate behind your eyes, wake you from sleep and worsen with eye movement
Ringing in the ears that pulses in time with your heartbeat
Nausea, vomiting or dizziness
Blurred or dimmed vision
Brief episodes of blindness, lasting only a few seconds and affecting one or both eyes
Difficulty seeing to the side
Double vision
Causes
The exact cause of pseudotumor cerebri in most individuals is unknown
It is listed on NORD, the National Organization of Rare Disorders
Anyone can develop Intracranial Hypertensionegardless of age, gender, ethnicity, race or body type. However, it does effect more women than men.
There is no cure, there is no magic fix but it is treatable.....
There is a research foundation http://www.ihrfoundation.org/ that has a lot more information. I have just touched on the basics.
Whewww....from now on we will just talk about me, my family and day to day stuff.
Brandy
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
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