We can not rely on our own understandings.....

The last couple weeks have been a roller coaster ride, with no option of stopping the ride and getting off. Each day has challenged me emotionally, physically and most importantly spiritually. For the most part I can handle the emotional and the physical portion, because I have somehow perfected the art of masking of my feelings and my pain. But when my faith and the foundation in which God has built is challenged, I become a complete mess.
I am a firm believer that God has His hand in all aspects of our lives, even when we feel like we have been abandoned and all hope is lost... He is there, just waiting patiently to help us pick up the pieces. It's how we decide to interpret His instructions and discern His voice that sometimes leaves us feeling the way I have been.
I have been praying faithfully for things to change but it was not until I joined a daily devotional group that I was reminded that I am not supposed to try to figure it all out alone. I am not to worry and carry all of these burdens alone! God has blessed me with other Christians to share my worries, my pains, my concerns and most importantly my love for Him.

"Let the message of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts." COLOSSIANS 3:16

Being reminded that I am not alone, struggling with THIS LIFE, has renewed my "spiritual lull" and given me the courage to stand tall and face the days to come. We all need a reminder sometimes.. the reminder that whatever life throws your way- you are NOT ALONE, so do not try to carry life's burdens alone. Seek out other Christians to share your worries and pains, your joys and accomplishments and remember to always delight in the Lord!!

In the past 2 weeks, my husband has left to go back out of town until mid-April, "A" has not had a single green light at school, I reached my maximum stress level at work (some of which I have brought upon myself), had an appointment with the neurosurgeon that did not go the way I hoped, have had to have blood taken three separate times (why they could not have gotten all they wanted the first time is beyond me.. I think they find pleasure in poking me), visited with my neurologist who informed me of a few things I would have rather not heard, thought I was going die from lack of air ( a lovely side effect to one of my medications), come to the realization that all 13 year old girls are complete drama queens and have even contemplated dressing up as one for a brief second and going to "K" school to remind them that they are only 13 and YES he rules of life to apply to them! and think I had a full fledged nervous breakdown that involved a glass bowl falling out of the cupboard breaking on my head and then slipping and falling in "A"s puddle of bath water she tracked into the hall, as I went to get the broom to clean up the mess (I think you get the picture...), all while perfecting the art of masking my pain.
So can you see why I have been on that roller coaster I described at the beginning of this post? I promise I would have loved to get off and stop the ride long before the nervous breakdown.... but I just could not find the emergency stop button.
I will have to post on my doctor's visits later because for now I am going to enjoy the beautiful day that the Lord has made with my girls! I will leave you with one of my favorite verses:
“‘Love the Lord your God with all your heart and with all your soul and with all your strength and with all your mind’ Luke 10:27

Conditions..Conditions..Conditions.. PART II

Ok.. so now you have a little insight as to the medical diagnosis in which I have been labeled (See earlier post). Now let me tell you a little bit about how this effects my normal day to day life.
While asymptomatic AC's are not that rare, symptomatic are. 99% of them are found during routine autopsy's after death and patients do not present with any problems. But I am part of the lucky 1% that is symptomatic.
My main AC, due to it's location and size, causes me to have such horrible headaches that I can not stand the sound of any noise or the brightness of a simple house lamp. My vision is often left impaired and I see what is know as the classical "fireworks" or floaters daily. (It is currently compressing my optic chasm therefore causing vision problems. I have almost completely lost my peripheral vision in my right eye) I can not stand the sounds of simple things and talking on the phone just heightens the pain. I am not even sure headache is a good word to describe the pain, because when most people hear that word it is often not taken to seriously.
I awake every single day this way and go to bed each and every night with my head throbbing. I have not been able to enjoy the small things with my 4 year old, like swinging on a swing. Its this type of thing I miss the most. I guess part of me has just gotten used to living this way and has decided that I will not let it control my life or dictate who I am. I work a full time job and raise (2) beautiful children. I do all of the normal things most parents do such as rush kids from practice to games, cook, clean, volunteer my time to anything my children are a part of and serve as an Elder at my church. Yes, I stay pretty busy. I do not call out of work due to my condition. But unfortunately, miss alot of work due to tests and procedures. I face each and every day with a smile on my face and rely fully upon God and not my own understanding to carry me through.
Seizures are also a side effect to the AC. While I have not had one in a while, there is still a chance and frankly it scares me to death when I do. I once was admitted to the hospital after a round of 22 seizures in less than an hours time because I could not speak. My oldest said I sounded like mush mouth off of Fat Albert.
I find that lately I become more confused than normal and my memory is completely shot. I am told this is due to the damage that has been caused by the pressure of how large the AC was before. (It was the size of a lemon. My head is barely that big so how it fit in there is beyond me?) I have been experiencing shortness of breath lately along with abdominal pain. I am sure this is in part related to the 16 daily prescriptions I take. My hands and feet stay numb and it is becoming more difficult to use my right arm.

The Intercranial Hypertension just escalates all of the above. In addition, it makes my eyes feel like they are going to pop right out of my head (that would be a sight...), constant ringing in both ears,dizziness and double vision. But the worst part about having it is that I wake up every day throwing up. I am not sure if it is the transition from laying down to sitting up that causes the vomiting but irregardless it never fails. Most days it only last a short time in the morning but others, such as yesterday, stay with me all day. Feeling like your in your first trimester of pregnancy 24 hours a day 7 days a week, is very unwelcoming. Especially when there's nothing sweet to look forward to at the end of it all.

The uncoroperative disks cause alot of uncomfortableness and neck pain that radiates into my back. My neurosurgeon thinks that part of the disk issue is related to the ICH. He believes if we can get the pressure under control with one of the many horse pills they make me take than they may subside some.However, it's to early to tell.
So for now I will continue to take my medication, take care of my family and stare straight into the eyes of my disease and tell it I am not afraid.
 "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11

Conditions.. Conditions.. Conditions...

A couple months ago I happened to meet this very fascinating Neurosurgeon resident at the local hospital where I was undergoing some tests. (Yes, LV I am referring to you! :)) Being young, eager and not yet  hardened by a heavy workload and long exhausting hours she is intrigued by my conditions. (Although, she was not humored by my suggestion of the possibility of me being the first brain transplant recipient.)
Yes, I said conditions. In case I have not said this before or went into great detail let me explain a little. I have a  rare type of Brain tumor known as a Arachnoid Cyst. Below is an actual picture of my brain showing the AC.

Condition #1: Arachnoid cysts are cerebrospinal fluid-filled sacs that are located between the brain or spinal cord and the arachnoid membrane, one of the three membranes that cover the brain and spinal cord. Arachnoid cysts around the spinal cord compress the spinal cord or nerve roots and cause symptoms such as progressive back and leg pain and tingling or numbness in the legs or arms. They constitute for approximately 1% of intracranial masses.
However, mine is a little more unique because mine is not between the brain and spinal cord. The largest one I have is located in the Empty Sella of the brain with it's roots embedded into my pituitary gland (this causes my head to swell severely on the right side because my pituitary is now displaced). The second and third ones are located at the base of my skull, close to the tip of my spinal cord. Therefore, making it harder to correctly diagnose and even harder to treat. Typical symptoms of an arachnoid cyst around the brain include severe headaches, nausea and vomiting, seizures, hearing and visual disturbances, vertigo,  difficulties with balance and walking, memory loss, confusion and mood swings. Untreated, arachnoid cysts may cause permanent severe neurological damage when progressive expansion of the cyst(s) or bleeding into the cyst injures the brain .

Condition #2: Intercrainal Hypertension
Increased intracranial pressure can be due to a rise in cerebrospinal fluid pressure. It can also be due to increased pressure within the brain matter caused by a mass (such as a tumor), bleeding into the brain, fluid around the brain, or swelling within the brain matter itself.
Cerebrospinal fluid is one of three major components inside the skull; the other two are the blood supply (the arteries and veins known as the vasculature) that the brain requires to function and the brain itself. Under normal circumstances, these components work together in a delicate balance. A pressure and volume relationship exists between CSF, the brain and the vasculature. But since the skull is made of bone and cannot expand, an increase in the volume of any one component is at the expense of the other two components. For example, if the brain swells and becomes enlarged, it simultaneously compresses blood vessels, causing the sub-arachnoid space to fill with more spinal fluid. This results in an increase in intracranial pressure (i.e. cerebrospinal fluid pressure), as well as a decrease in blood flow.
CSF has several important functions. It cushions the brain within the skull, transports nutrients to brain tissue and carries waste away. CSF is produced at a site within the brain called the choroid plexus, which generates about 400-500 ml. (one pint) of the fluid each day or approximately 0.3 cc per minute. (The total volume of CSF in the skull at any given time is around 140 ml. That means the body produces, absorbs and replenishes the total volume of CSF about 3-4 times daily.)
An increase in intracranial pressure is a serious medical problem. The pressure itself can damage the brain or spinal cord by pressing on important brain structures and by restricting blood flow into the brain. If the increased pressure pushes on important brain structures and blood vessels, it can lead to serious, permanent problems or even death.
In order to determine if your CSF is elevated you have to have frequent pressure checks. My last one came in at 245. It's my understanding that for my size and age I should be around 180. While those two numbers do not seem to far apart in the spinal fluid measuring world there's a huge gap.

Condition #3 Bulging Disk

A bulging disk is a condition related to the spine, usually the lumbar, or lower back, that occurs when a disk bulges through a crevice in the spine.  Although, mine are at the base of my neck located at C-5 and C-6. Disks are the soft, gelatinous material that cushions the vertebrae of the spine. A bulging disk occurs when the disk shifts out of its normal radius and most often occurs simply as a result of age. A bulging disk is different from a herniated disk in that a bulging disk typically occurs gradually over time rather than suddenly. A herniated disk is often the result of an injury or trauma to the spine. In the majority of patients who experience a bulging disk, there is no pain unless the disk becomes herniated or protrudes into a nerve. Well you guessed it, mine are caused by the increased pressure and impinge upon nerves therefore causing lots of neck pain and tightness.

Sounds fun right? Well let me assure you that I can think of several other ways to describe fun!
So with the combination of the CSF pressure and the AC, LV  was ecstatic to see that I have started a blog giving a little insight into what it is like living a day in  my shoes. I am hoping with her help and the help of others that technology will advance and relief will soon be on the horizon for people like me. I know what you are thinking, is that possible?? People like you?? Well, people with either one of these conditions.
So thank you in advance LV for your help and your support. Thank you for taking an interest and most of all thank you to all of you who follow along.
God Bless!!

I am not my Disease!!

I was watching an episode of Royal Pains the other night and it was about a guy who had MS. His motto was "I am not my disease".
How true this stands for anyone with any type of illness. I know for me I hate being known as the girl who has the brain tumor. Sometimes I feel like people think they have to treat me special or talk to me like differently because of my condition. While others avoid me altogether. Hey - it's not contagious!!
I can assure you, while yes I do have brain damage, I am fully capable of comprehending what you may be saying to me and I can do almost anything that anyone else can. I may have to write myself a note or two to remind me things so I do not forget, but if I tell you I will do something I am going to do it to the best of my capabilities and then some. Partially because I am a little, ok a lot, controlling and I never want anyone to think that I am MY disease.  I may not remember who was in my senior class ** years ago or what I wore to work last week, but hey I have brain damage remember??
You have to learn to become your own advocate when dealing with something as unique and unknown as myself. No one knows your body more than you and the more you educate your self on your condition, the more you will be able to determine what the best action for treatment is. You have to educate yourself, become familiar with your disease and research all options for treatment. You DO NOT have to become your disease.
When you become your disease you admit defeat, you give up and you let it control your life. I truly believe that your mental state and outlook is over 90% of your battle.
Yes, I have really bad days. Yes, sometimes I wish I could just crawl back into bed and stay there. Yes, there are days where I throw myself a little pity party with party hats, streamers and a guest list of one. But these days are far and few between. Because when I get like this I have to remember that God put me here for a reason and He blessed me with this for a reason. (Oh.. and I am horrible at pity parties.) So I just have to pull myself together, put on my big girl panties and deal with it.
Several months ago when I found out that the tumor was back for a third time. It is bigger, badder and it brought two of its friends. I have to admit - I freaked, had a long pity party, freaked a little more, cried daily and then I was able to finally pull myself together. It took me a while before I would even tell anyone outside my immediate family because I did not want to have to answer a thousand questions, be looked at as poor pitiful Jessica and I was afraid. Maybe if I did not say it out loud it would just go away. WRONG!!
But going through this process made it easier for me to face the facts when I did decide to start telling close friends and extended family. It was almost like I needed to grieve privately first so that I could prepare myself for the overwhelming whirlwind that I knew was coming.
I am horrible at sharing my feelings publicly and when I am forced to do so I often cave emotionally.
Thankfully I do not have to do it alone as I always have God by my side. To laugh when I laugh and cry when I cry!
Many Blessings!

Truth or Speculation???

   

Eastern Shore disease cluster?

The Eastern Shore – which includes the burgeoning Baldwin County communities of Spanish Fort, Daphne, Montrose, Fairhope, Marlow, Fish River, Barnwell and Point Clear - in recent years has experienced high rates of rare cancers, including brain and neurological cancers, leukemias and lymphomas, as well as Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease.

Scientists will study Fairhope area this summer because of an apparently high number of rare cancers and neurological ailments. A team of scientists from Nebraska and Arizona plan to visit this summer to investigate what appears to be an unusually high number of rare cancers and neurological diseases showing up in Eastern Shore residents.

Shambaugh-Miller said scientists are coming to believe that the onset of some neurological diseases, as well as the relatively rare cancers seen on the Eastern Shore, may be triggered by a combination of genetic and environmental factors. Particularly unique, he said, is the relatively high number of MS cases seen in southwest Alabama.

"That's about 800 miles south of the MS line," Shambaugh-Miller said, explaining that MS typically occurs much farther north, in colder climates. "Any MS south of that line is extremely rare. It is very rare in subtropical areas. ... When I look at Fairhope and see a lot of MS, that triggered my involvement. You shouldn't have that number of MS cases in that area."

Since the research scientists announced their intention to come to the area, the state has followed up on an investigation started several years ago. The state effort involves interviewing the families of those afflicted.

State officials did not return calls seeking comment.

Rare conditions

The researchers are basing their initial concerns on a dozen years' worth of disease data collected by Lesley Pacey and Anna Calhoun, two Eastern Shore mothers whose families were touched by rare conditions. Calhoun has since moved with her family to Nebraska.

Pacey's daughter was afflicted with leukemia at age 4, while the child's great-grandmother suffers from ALS. Pacey said she began trying to keep track of the illnesses when two other children in her daughter's play group also developed rare, life-threatening conditions, including leukemia and neuroblastoma. Like many of those afflicted, both Pacey's daughter and her great-grandmother have lived on the Eastern Shore their entire lives.


According to federal statistics, Baldwin County as a whole has a cancer rate slightly below the national average. Federal records are available only on a county-by-county basis, so it is not possible to compare disease rates among towns.

"Why is it just this little strip along this particular coast? Why doesn't it extend further inland?" wondered Shambaugh-Miller, who noted that the incidence of cancers seems to ease off both to the north of Fairhope and to the east.

Mark Witten and a group of researchers from the University of Arizona will be analyzing trees in Fairhope as part of the cancer study. So far, an initial investigation found elevated levels of chromium, zinc, and mercury in the leaves of some trees in the town, Witten said. A more thorough study will analyze core samples from living trees.

"The beauty of our tree coring is we can actually go back in time and try to develop an environmental history of an afflicted area," Witten said.

Witten then uses pollution data from the trees to set up exposure experiments for mice in his laboratory. He has used the technique in Nevada, Connecticut, Kansas, California and New York, particularly in places believed to have abnormally high leukemia rates. In most of those cases, abnormally high levels of tungsten have been discovered in the tree core samples, Witten said.

Fairhope, in decades past, has been home to various industries and a lot of farming. The region's abundant rain and permeable aquifers raise questions about the groundwater most people in Baldwin County drink, said the scientists. They were also curious about Mobile County's long run as one of the most polluting counties in the nation. Mobile no longer ranks among the top 10 most-polluting counties nationally, as many industries have shut down since the mid-1990s.

"I just think you shouldn't have three kids with cancer in your child's play group," Pacey said, about her daughter's playmates. "Then in her first-grade class there was another kid with cancer. Then I go to Jazzercise and there are two moms with kids who have cancer. We have people in the family with ALS, and people at church with ALS. It just doesn't seem right."

We do not know from where our environmental issues stem. But we do know that our neighboring Mobile County in 2000 ranked eighth in the nation for total toxic releases into the air, especially neurotoxins and developmental toxicants that cause birth defects and cancers, according to EPA’s Toxic Release Inventory (TRI). Also, Mobile County in 2001 was ranked the worst county in the nation in the release of air pollutants linked to birth defects, according to TRI.


The Eastern Shore is listed as the 8th largest disease cluster in the United States. With all of the strange neurological diseases, rare cancers, blood diseses and so forth in our area it just makes me wonder is there any truth  to be found in all of this? I know for me personally I do not remember, growing up, knowing or being aware of this many people who have been or are currently effected by so many rare diseases. I could list at least 10 people off the top of my head, myself included, who is dealing with a "unexplainable" condition that has no rhyme or reason to it.
So I ask is this truth or just speculation???
Most of the information above was taken from www.EasternCommunityHealthPartners.com

Changes to come........

Well things have been insanely crazy around here so I have not had a chance to post in a few days. Honestly, I do not know how all of you raising children, working full time and running a household have time to also blog daily. I'm lucky if I can remember to take something out for dinner each day much less write a blog insert!!
But anyway.......
So last week was really busy for me. I worked 12 straight days without a day off. I was just returning from being out after having the cisteriogram then had to work home builder show all weekend and then finished my 12 day stretch with a very busy week at work. See I was trying to tie up all my loose ends, make sure all clients and builders were happy and content because today I leave for MEXICO for 6 days!!!! I am so excited just to get away and relax with my family (my parents, sister, brother in law and niece), kids and most importantly my husband, since he has been gone for 3 weeks. Man.. have I missed him!!:)
But what I really want to share with you is my visit to my neurologist last week.
I really like Dr. S, he is great!! A little weird and his one front tooth moves up and down, in and out of his mouth making it hard to focus on what he is saying, but he is great!!! So this is my first visit to him since the whole needle jabbing ordeal a few weeks ago. He starts by asking how things went and I give him and quick, but necessary run down. Then he begins his neurological exam. I explain to him that my right arm has been acting a little funny. Not the kind of funny that it's standing up telling jokes funny, but the kind of funny that when i try to pick something up my hand suddenly goes numb and I tend to drop whatever it was I was holding (usually on my foot - which my foot DOES not think is funny!!). I also can not fully extend my arm because when I do I get a awful shooting pain into the right side of my head and through my neck.
So his diagnosis: "Severe nerve damage in brain has caused it to radiate down into my right side limbs", this means that eventually I will loose complete feeling in my right arms and eventually my right leg. He also noticed that I have some "droopage" in the right side of my face. Furthermore supporting his nerve damage theory. So what to do for now: limit the use of my right arm. Personally I do not see how this is possible as I am right handed, drive a stick shift with my right arm and virtually everything else I do is done with this particular limb. What can I say it's a habit. Well that or a God given trait!
He also decided to go ahead and put me back on 250 mg of diamox 2x daily along with potassium supplements so that my hands, feet and face to not completely go numb due to this medication sucking all of the potassium out of my already damaged body. Well if you know anything about diamox, it acts as a lasic which means I spend more time going potty than anyone thought was humanly possible. I have been on this medication before so I already knew what to expect, which is nice.
Whats not so nice is this is most likely only a temporary fix. My team of physicians (yes team - when you are me you have the privilege of getting an entire team assigned to you!! whoop whoop!!) are giving one final attempt at the medication route before they opt for a Ventricular shunt (the fluid will be drained from the brain into the peritoneal cavity or belly or into a chamber in the heart from the brain). Since, as many of you might of guessed, I am not thrilled about the idea of them inserting a large draining tube throughout my body, so for now I will take the medication and pray to God that this time it will work alot better so I do not have to endure the 8 hour surgery.
But honestly, all joking aside... I fully put my trust in the Lord and know that what is His will , will be done!! I may eventually not have the use of my right arm, my face may look a little distorted and hey I may even get a large drainage tube with access sight that looks like Frankenstein, but I will never loose my faith. I know there is a reason that God has chosen me to endure this. I have complete and utmost faith that He has put me in the situation for a reason. He has a plan!! and I am OK with that, I am OK with knowing that what I go through each and every day has a reason and a purpose and when the time is right He will reveal to me what that is.
God is so good even on our worst days. He never gives up on us, never abandons us and never leaves us to figure things out all alone. He has been and will continue to walk beside me and guide me on this journey, as long as I put my trust in Him.

" The Lord gives His people strength. The Lord blesses them with peace" Psalm 29:11

Dr. Quack

So today was a rough day.
It all started with a morning of endless wardrobe changes before finally settling on something I started with. Then I awoke my 4 year old with my sweet rendition of You are My Sunshine, as I usually do, only to have her cry hysterically because she wanted to me to sing Little Bunny Foo Foo instead, followed by uncontrollable whining because her leg was asleep. If you are a momma, you can understand where I am coming from here! Patience is a virtue and ohhh was mine being tested.
My day at work was filled with dismantling displays and packing samples into a box truck to get ready for a home builder show I am working this weekend. While there was plenty of help from some of my male co-workers, I just could not get it together today.
This was just one of those days were I have a severe case of nausea that I just can not shake. As my day progressed, so did my nausea. In addition, my head hurt so bad that I took enough medication that it should have put a quarter horse down. However, I saw no relief.
But what I really want to share with you is the phone call I received. It was in reference to "Dr. Quack."
For those of you that do not know, that is my previous neurologist. See back in August I filed a formal complaint against him with the state Board of Medical Examiners. My complaint went something like this:
Dear ABME,
Dr. Quack has treated me for the last 3 years. Over this time frame he has poked, scanned, shocked, drugged and re-poked me. He has given me medication that has caused my condition to worsen, cyst to grow and pressure to increase rapidly. All of this resulted in an exotic 7 day 6 night stay in my local hospital, where he came to visit me without authorization and a turkey thermometer in hand. Upon his arrival smelling intoxicated, he sneaked past nurses station, came into my suite and re-poked me. When he attempted to remove the turkey thermometer he yanked it out of my spine, screamed at nurse who busted him and threw the needle on floor. Then left room to never be seen again. His negligence caused a series of events including, seizures, raised blood pressure, swelling of entire body (internally and externally), liver to swell, loss of feeling in legs and feet and a few other unmentionable side effects, as well as a transfer to a larger hospital via my own personal ambulance.
Therefore, I think Dr. Quack should be questioned in regards to his methods of treatment.
Thank you for you time,
Upset patient with brain dysfunction

So.... this well written complaint warented my own case worker and board of investigators. While I have spoken with them quite a few times, prior to today, they were calling me today to let me know they interviewed him yesterday with my letter and records in hand. Great news!! What happened??
Well, I don't know because they will not tell me what he said and I will not be privileged to any paperwork submitted by him as a rebuttal. What???????? Then why did they call??
"Courtesy call mam, to let you know we are on top of your complaint."
Ok... thanks, I guess. Glad your on top of it.
The case worker did tell me that when the investigation is complete, in 6 months or so, the will send me a written response. I asked them how many times was this doctor allowed to continue to do this ( he already has several other complaints filled against him, as well as he has been fined and license previously suspended) and I was told there are no set guidelines in my state and each complaint is evaluated on a case by case basis.
Is that crazy or what?? No set guidelines?? Does this mean that that anyone can get a Internet doctorate diploma in my state to practice medicine? Furthermore, in the area dealing with the brain and central nervous system are there not supposed to be stricter guidelines? Guess not!!!
So for tonight my prayer will be that those who are still under the care of Dr Quack come to their senses and seek out other options.
In case you are wondering, I have a awesome new neurologist who has even practiced on a pig spine before giving me a specific type of nerve block to the brain, to ensure he was doing the procedure correctly.  He is extreamly intelligent and is familiar with my rare condition.

Praise God for the blessing in disguise!!