Post Lumbar Shunt Revision X-Ray

Below are pictures taken today (9-6-11) of my Lumbar Shunt during a X-Ray. Since I am still having swelling in my abdomen and around the valve my surgeon wanted to get an X-Ray to ensure the tubing has not come loose. According to him the tubing looks good and we just need to continue to watch swelling to see if my body will "adapt" to this foreign object or not.
So since I begged the tech for the disc I thought I would share these images with you.

This was taken from the side (Right to left) and as you can see there is ALOT of swelling in my stomach and the tubing itself appears to just be under the skin of my belly button. I must say I was surprised at the amount of "shunt" inside of me.

This image is taken from the front and the shunt shows up a little clearer here. This picture now explains why my right hip has been hurting so bad as it appears the tubing is very close to my hip bone. Again, can not believe how much tubing there is!!!



And last but not least is another side view (left to right). Here you can clearly see how big my back bulge, I call him BOB, really is. This image of the tubing is not very clear.

I know must of you probably think I'm crazy (this post I'm sure has nothing to do with that perception) but I really am a visual person so being able to see what's inside of me has really helped to understand it's purpose and meaning.

However, at this point whether I understand it or not I do not think my body likes it and I really afraid that even after 10 revisions my body will not accept it. While I continue to pray boldly that this is not the case I am also a realist, so if I do not show signs of improvement quickly then I think it will not be long before I'm checking back into my sterile resort for revision #2!

Thanks for continuing to let me share my story with you all!

Many Blessings,

Jessica

Emergency Revision #1

Well after one emergency surgery, 2 additional incisions and 11 lbs of CSF (Cerebrospinal fluid) removed from my abdomen - I'm finally home!
I guess in order for you to know whats taken place over the past few days, I have to go back to the beginning of last week. I will do my best to try to accurately explain what has happened, but this past week has been a complete blur so forgive me if I leave something out.

Since having the setting changed on my LP shunt on Aug. 22, the swelling at the incision site on my spine and my stomach continued to INCREASINGLY get worse by the minute. (I would post pictures of how big they were but unfortunately I've already seen the look on my family's face as I forced them to repeatedly look at it and I do not want to cause any vomiting so early in the morning!) My headaches continued to worsen and I was at the point where I thought I would just die if I did not get some type of relief soon. I immediately began trying to get ahold of my surgeon as I knew something was not right.

On Wed., August 31, my surgeon's PA called me to see how I had adjusted to the new setting, unaware of the messages I had been leaving. When I began to explain what was going on she immediately told me to come into the office the next morning to see her. She also advised me that she would try to get a ultrasound set up for after my appointment to look at the shunt and make sure everything was working properly.

The next morning I decided to go into work for a few hours before my appointment. By the time I arrived at the office the surgeons office was calling me asking if I could come to the hospital first for the ultrasound. Since it's about and hour away I told them I would be there as soon as I could.
I arrive at USA Hospital and was immediately taken back. One panicky tech and 45 min. later I was on my way the see the surgeon. I did not even get through the office doors and he was standing there with his PA and a resident asking me to lift my shirt so he could take a look. Immediately, he told them to get general surgery on the phone and set up surgery for first thing the next morning. This is when the waterworks show began. Surgery? What? WHY??

Apparently because of previous scar tissue from my C-section, of my second child, my body was not absorbing the spinal fluid as it should and I now had a large pocket of fluid accumulating in my abdomen and backing up into my spine. "The fact of the matter is if we do not get it out it will become septic!"
I left his office a complete emotional basketcase and looking back now wonder what those driving beside me on I-10 thought as I sobed hysterically while driving 40mph. I did not want another surgery! I've only had this stupid thing in for 8 weeks and somethings already wrong!
Surgery was set for 11:00 the next day. As I re-played the days events in my head, all I could think is "Please God - don't let this be happening." But it was.
My husband raced home from Georgia, my sister agreed to pick up the girls from school and my parents were all set to be at the hospital with me.

As I was being prepped for surgery, so many things were unclear. Nobody could tell me exactly what they were going to do, how long it would take or what the chances of this happening again are. All they knew is that the shunt had to be moved and the fluid had to come out. How they were going to do this, they were unsure of until they got in there.

The surgery took a little over 3 hours, I think, and they moved the tubing to above my liver. The ended up removing over 11 lbs of fluid from my abdomen and having to make an incision in my belly button and re-open my already sore abdomen scar. I awoke in so much pain that even the 10mg of morphine every 2 hours offered no relief.

I am bruised from my back around to my belly button on the right side, my right hip feels as if they repeatedly hit it with a bat while I was asleep and the pain in my abdomen alone is enough to make me want to curl up in a ball and cry. (However, I am positive this will only make the pain worse.) Two days in the hospital with some amazing nurses and I was able to come home yesterday.

I am still not exactly sure if the tubing came loose from the valve or if my body is just not capable of absorbing the spinal fluid. I was not able to get a real clear answer out of anyone I asked. I do however know that I hope this is the first and last revision I ever have to undergo. While some may think lying around and being waited on hand and foot is the life, I must say it's not the life for me!!

I would not wish this pain or this disease upon anyone or anything. My heart breaks for the children who suffer in silence or who are mis-diagnosed with this. Unfortunately, there are not alot of options when it comes to those suffering with ICH and AC. So for now I will pray that medical technology continues to advance each and every day and the God lays His every loving hand upon those who are suffering and is able to offer them some type of hope and relief for a pain free future!

Many Blessings,
Jessica

First Adjustment

Well it has been a little over 7 weeks since my LP shunt surgery and while I hoped and prayed this was going to be the answer,  now wish I would have never had it put in, in the first place!!!

My symptoms have all returned with an angry vengeance and are becoming less and less bearable. My head hurts so bad that I am wondering if is not worse now than it was prior to having the shunt put in. With Corey working out of town that leaves me to take care of the house and kids by myself and it is virtually impossible to do so while feeling the way I do.

I had my first adjustment to the valve on Monday at the Neuro's office. It took the PA about 15 min and was completely painless. She simply took this magnetic machine and moved it across the incision site, on my back, that then changed the setting of the valve. They turned down the setting, therefore allowing more fluid to be released through the shunt. Now the pressure will not have to get so high before it starts to drain. However, changing the setting is like starting all over again.

Over the last week I have been running a fever off and on, have severe low pressure headaches and the incision sites on both my stomach and back are swollen. My back looks like someone surgically inserted a grapefruit under my skin. It is so big and so tight that I am afraid it is going to rupture. I can not lay flat because it hurts extremely so bad. My stomach looks like I ready to birth a small elephant, but only on the right side. I have gained 12 pounds since the surgery and its all fluid retention. For some reason my abdominal cavity is not absorbing the fluid like it is supposed to.Words can not even begin to describe how uncomfortable I am right now.

When I saw the neurosurgeons PA last week I was told that sometimes it takes longer for your body to adjust and not everyone reacts the same as others to having the LP shunt. The fluid is not draining properly through the tubing and instead is accumulating around the valve (back) and incision site on my stomach. She immediately sent me to have an X-Ray to ensure the tubing was not tangled. I heard back from them two days later saying that the shunt itself looks good and if the fluid does not begin to subside they will do an abdominal ultrasound which will be able to provide more answers than the X-Ray can. I am not sure if they can see if the shunt is blocked through the X-Ray or not, I guess I will know soon enough. I was able to look at the X-Ray and I have to say I was shocked at the amount of tubing that is in my stomach. It look like a ball of yarn shoved into my abdomen. Even the X-Ray tech was taken back by the amount of tubing in there. As gross as it sounds, I have to admit it looked pretty cool!! :)

I did return back to work, part time, about three weeks after the surgery and now I am beginning to think I jumped the gun (as I often do). Simple tasks like sitting up are requiring far to much energy. I am so tired after being up for just a few hours and am then required to lay flat for several hours. This is making it very difficult to accomplish anything and unfortunately everyone and everything in my life is being neglected right now.

I hope that my doctors are right and eventually my body will get adjusted to this new device and I will begin to feel the relief I hoped and prayed would come. For now I will continue to suffer through the non-stop  pain and do the best I can with the cards I have been dealt.

Better explination of IH

 

The following information is taken right from the Intercranial Hypertension Research Foundation's website. For more information on this condition, how you can help and resources for those who suffer with this condition, please visit them at  http://ihrfoundation.org/.

I encourage you to seek out medical help immediately if you, or someone you know, has been diagnosed or may be suffering with this condition.

Life is to precious to waste!!

"Intracranial hypertension (IH) is the general term for the neurological disorders in which cerebrospinal fluid (CSF) pressure within the skull is too high. (Old names for IH include Benign Intracranial Hypertension and Pseudotumor Cerebri).
The Intracranial Hypertension Research Foundation is the only non-profit organization in the world devoted to supporting the medical research of chronic intracranial hypertension. We also provide assistance, education, and encouragement for individuals with chronic IH, their families and medical professionals.
Our mission is to discover why intracranial hypertension happens, along with new, effective treatments. Our ultimate goal is to find a cure."

Living with IH

"Like any chronic illness, chronic IH can impact both individuals and families physically, financially and emotionally.
If you’ve been diagnosed with IH, it’s important to know that this illness affects everyone differently. An IH diagnosis doesn’t necessarily mean that you will have to stop working or going to school or participating in activities that you enjoy. At the same time, it’s important to take of yourself and recognize that there is much that we don’t know about this illness. The best judge of your abilities is you.
Disability is an issue, especially disability due to loss of vision and/or chronic headache. Some individuals do become too sick to continue working or going to school. Simple, everyday tasks can become overwhelming and a formerly independent person may have to rely on others for help.
However, it’s worth repeating that each person’s experience with IH is different. Some people may experience a remission of their symptoms. For others, chronic IH can be cyclical, a pattern of remission and reoccurrence. And for some, the illness is truly chronic and does not go away. With research, we can learn more about the natural course of chronic IH. 

“But You Don’t Look Sick.”

Much of the time, someone with chronic IH may not “look” sick. Physical appearance can often be misleading and is not a good indicator of how well or sick a person with chronic IH may actually be.
It’s also important to remember that signs of chronic IH, such as papilledema, occur within the body, rather than externally and symptoms like a headache can only be felt by the person experiencing it. So, it’s not unusual for patients to feel frustrated when they try to convey their painful circumstances, despite looking “okay” on the outside. It can be equally frustrating for friends and family, who want to understand what is happening to their friend or relative.
Another mystery of chronic IH is that it can be variable. Sometimes, feeling sick occurs in waves. It’s quite possible to feel better for a short period of time, and then, feel worse again or vice-versa. (Sometimes this can happen in a short span of time, i.e. 5-10 minutes.) One hypothesis is that these variations may be due to fluctuations in CSF pressure. A sudden change in behavior or capabilities may be a sign of a change in intracranial pressure.   

Depression

Chronic illnesses in general and neurological illnesses like stroke have been associated with higher rates of depression. A 2007 study from the University of Toledo in Ohio recently found a high prevalence of depression among women with chronic headache. While there has not been formal research directly linking depression and chronic IH, it’s not uncommon for someone with chronic IH to experience depression.
Changes in sleep patterns, appetite, loss of motivation and self-esteem, feelings of guilt or blame, irritability and anger may be signs of depression. Recognizing depression is the first step to getting help. Counseling, especially with someone who has experience with issues relating to chronic illness, may be helpful. If anti-depressant medication is prescribed, it’s important that all doctors know about any other drugs that you are taking, especially other anti-depressants (such as tricyclic anti-depressants like amitriptyline, which may be used to treat chronic headache pain) that can potentially interact.
 

Financial Resources

The costs of medication, surgery, hospitalizations, doctors’ visits, and other medical expenses related to chronic IH can be significant. Loss of a job or wages as a result of being ill does not only impact income but since many people rely on employer-provided health insurance, it can affect health insurance coverage. 

There are government resources to help you find free or low-cost medical care and assist with your bills, including Supplemental Security Income (SSI) and Social Security Disability (SSDI). Many drug manufacturers run prescription assistance programs that provide free or discounted medication to those who are uninsured. In addition, certain religious groups also run social service organizations that help members of the same faith. If you belong to a church or religious institution, they often have resources to help parishioners or can direct you to places where help is available."

May God Bless all of you who suffer, have family member who suffer or have lost a love one to this disease! I will continue to keep all of you in ,my daily prayers.

God Bless,

Jessica

Three Weeks Post - OP

It has been almost 3 weeks since my shunt surgery and so far everything is "going way better than anticipated". The bruises are slowly fading, incisions are healing and the pressure in my head is starting to stabilize. There are a few new things I am going to have to get used to, such as the feeling of the tube draining the CSF into my stomach and the control valve bulging out of my back, but overall it is a small price to pay if it ultimately does what it is intended to do.

My neurosurgeon was absolutely amazed at my progress when I visited him last week for my post-op visit. He said my incisions were healing wonderfully, my bruising was minimal ( glad he thinks so) and all of the swelling will eventually go down. This was all music to my ears - especially the swelling since I have yet to be able to squeeze back into anything that does not have an elastic waistband. But more importantly than all of that - THE SHUNT SEEMS TO BE WORKING!!!!!!

While, yes, I do still have headaches they are not crippling. My head does not feel as if it is going to self combust at a moments notice. My eyes do not feel as if they are going to blow out of my head and my ears have finally "popped" back. I can hear! Yippee!! All great news!


Dr. M told me while he was amazed at my progress, especially given the fact that they had originally thought I would be down several weeks and after 2 weeks  he released me to "light" duty, he was not surprised. Apparently he has become well aware of my stubbornness and has learned that it is going to take alot more than a little brain or shunt surgery to keep me down!

While I would like to think I have gotten through this last few weeks all on my own, I know better. I know it is by the Grace of God that I have gotten this far. He was there guiding Dr. M on 7/7 @ 7, He was there lifting me up when I felt weak and He was there when I felt like I could not go on any further. But most importantly - He was there because all of you lifted me up in prayer and asked!

"For where two or three come together in my name, there am I with them." Matthew 18:20

I can affirm that I know I would not be this far in my recovery if I did not have all of you in my life. For that I am eternally grateful!!

To all of you who have called / text and checked in on me - THANK YOU!!
To all of you who have sent cards - THANK YOU!!
To all of you who have unexpectedly dropped off a hot delicious meal - THANK YOU!!
To all of you who have picked up / dropped off / kept my kids - THANK YOU!!
To my sweet "K" who has stepped up and been such a huge help - THANK YOU!!
and To my parents who have been here every step of the way the last few weeks making sure me and my girls had everything we could possibly need - THANK YOU!!!

May God continue to bless all of you as you have blessed me!

The Surgery

First things first........THANK YOU to each and everyone of you who said a prayer for me the morning of my surgery. I will never be able to put into words the overwhelming sense of peace I had that morning knowing that I had so many of my friends, family and even strangers all praying for a successful surgery!!

I arrived at the hospital, a little nervous, at 6:00 a.m. as instructed with my husband and my sweet "K" in tow. Immediately upon my arrival I came face to face with a 19 year old boy who was also set to have surgery. This young man had been driving over 90 mph and drinking when he wrapped his car around a tree. He had rods and pins sticking out of his left leg and was getting ready for his 3rd surgery. As we waited in registration I could not help but think about what him and his family must be going through. As I prayed for God's hand to be with him and his doctors that morning and the days to come, I realized how blessed I am.

They called me back to begin the prep pretty quickly and it was not long before JB came for a group prayer and I was saying my goodbyes to my sweet family. I was even blessed by a visit from 2 strangers, who were nurses and had seen the prayer request on FB, prior to being whisked away.  The last thing I remember is the very kind anesthesiologist saying he was going to give me something to help me relax and they would be putting me to sleep soon. 
When I awoke in recovery, I was in alot of pain. As I opened my eyes, my first thought was what had they done to my stomach because it felt like they had taken a skill saw to my abdomen. It wasn't long though and the recovery nurse was giving me something for pain and I dosed back off. The recovery room, however, is not a place to rest. It is filled with nurses running about and patients being wheeled in and out from various surgeries. I must say though, I commend all of you who work in this profession because some of what I saw and heard was not easy to swallow and the nurses there handled each and everyone of the patients with grace.
It was several hours before I was moved upstairs to a room but the recovery nurses allowed me to see all of my family, who had been waiting ever so patiently for the outcome.
According to Dr. M, everything went "perfectly and better than expected"!! (I think alot of it had to do with all of your prayers) The surgery itself took less time than expected, he was able to get the shunt in with no problems and was confident that I should have a far less expected recovery time than initially thought. PRAISE GOD!!
He did tell me later that he had to physically move a few muscles around in my abdomen and thread the catheter from my stomach to back with a metal rod, so some bruising and tenderness would be expected. But all in all everything looked good. He wanted me to get up and move around, as tolerated, as this would speed up the recovery process. What? No lying flat for 10 days?? This WAS good news :)
The first few days following the surgery I was in a severe amount of pain. But the good news is that it is incision related and not severe pain from my head. Yippee - maybe the shunt is working.!!
I have been having low pressure headaches but they are more uncomfortable than painful and nothing in comparison to what they were like prior to last week. My legs and hips hurt really bad upon standing, but I am told this is from the swelling of the nerves around my spine and should go away in a few days. My stomach is still real swollen (I do not foresee putting pants on anytime soon) and I am very tired. But I am not vomiting upon standing, no ringing in my ears and my head feels better than it has in years!!
I have yet to be able to stay upright for longer than a few hours and I am still spending more time in the bed than out, but I think alot of this is what you would expect with ANY surgery.
 I am hoping that another week of resting and taking it easy and I will be able to begin to resume somewhat of  "normal" activity.
So for now, I am praising God that everything went better than initially expected and I am looking forward to whatever  tomorrow might hold!!

Many Blessing,
Jessica

LP Shunt

So Tuesday was the BIG visit with the Neurosurgeon. I have to say the overall the news was very encouraging!! Given my current vision, which is basically none in my right eye, the decision to do a lumbar shunt was made, within the next week. The encouraging part: No skull drilling, no head shaving, less recovery time and the duration of surgery is significantly less.
So what does this mean???
Well, they will insert the "catheter" like tube and silicone mechanism you see above into my lower spine area. It will have a larger tube, at the other end,  that will then drain the excess CSF fluid into my abdominal cavity, where it will be absorbed. The control valve, which has 5 settings,  will be placed under the skin next to my spine and can be adjusted with a magnet, if needed. Three small incisions (spine, side and abdomen),  hour to two hour surgery and a few days in hospital! All good news.
The tough part will be the days to follow coming home. For 10 days I will not be able to do anything at all. (If you know me then you know that this part is going to be extremely tough.) The reason for this is to allow your body to adjust to the new CSF pressure. They will set the drainage to a medium level, to begin with and it must stay there for about 30 days. If I am not feeling any relief after the first 30 days then they can adjust the drainage, in office, with the magnet.
The worst part of this is I can expect to have what is called a low pressure headache for the first few weeks. This is considered normal. Painful but normal. This is caused from the drop in CSF pressure levels and can be unbearable.
The brain normally sits inside a “bag” filled with spinal fluid which extends down from the skull into the spine. The “bag” consists of membranes called the meninges (as in meningitis). The CSF fluid helps to circulate waste products out of the brain and provides cushioning and support. When the pressure of this fluid is too low, the brain may “sag” downward when the patient is upright, stretching the meninges and nerves lining the brain and causing SEVERE pain.
These are the same type of "headaches" I get after a spinal tap and from what he said, until my body gets accustomed to the lower pressure, I will have a continual "spinal" headache. This is the part I am not looking forward to the most.
There are of course risks and complications as there are with any surgery, but I really think the benefits out weigh them at this point.
However, I know that once I get over the initial "hump" things should increasingly get better. The goal is to have my vision be somewhat restored and the daily pain subside.
I am truly blessed to have such a wonderful support system, whom I could not get through the day to day without. I know that with them and God by my side I will be able to survive those first painful days and I look forward to a much brighter future ahead.

Is there a Silver Lining?

We often take for granted how good life is and forget how quickly things can take a turn for the worst.
While these last few years have not been a piece of cake for me, or my family, I would like to think that I have done my best to find the silver lining in  EVERY grey cloud along the way.
Although, lately I feel as if there is not a silver lining or a blue cloud in sight.
After LOTS of tests and procedures over the last few months I have been forced to face the realization that I am not going to get any better on my own, regardless of what I would like to think or what little magic pill I am forced to take.
I had a visual field that left the doctors telling me I have a 90% chance of going completely blind in the next few months. A nerve test that resulted in the confirmation that I have severe damage to my brain and right side of my body and a spinal tap that resulted in a elevated CSF pressure reading. Think that's alot to take in........ well you have not even heard the best.
Apparently the severe pain upon standing that followed the tap confirmed that I have a defective "ball valve" in my brain. What is the ball valve and Who the heck has a defective one? and why in the world am I the special one who gets the defective one? Is this some cruel joke??? Did I skip class the morning these were being handed out? I mean as if my already dysfunctional brain was not enough, now I get defective valve? If I were an old Buick they would put me down!
In my case a PT Cruiser, but hey that's a whole other post!
Learning this explains alot. It explains why some mornings upon awaking I throw up and others I don't. It explains why sometimes upon standing I get extremely dizzy, why I can only sleep flat on my back because lying any other way causes an extreme burning sensation, why I have so much pressure behind my eyes and a gazillion other things. See the defective valve thingy does not allow the CSF fluid into my brain or it's ventricles properly. Sometimes it rushes in and other times it trickles and apparently if it is stuck it can flood my brain and / or not flow at all.
So what does all of this mean? Well I will find out when I go see the surgeon on the 21st. Looks like there is a shunt in my future. I can not say that I have decided 100% (or even 10% for that matter) that I am on board with this option. While my neurologist does not think I have any other option and he assures me that I will see a dramatic improvement, I am terrified. Terrified of the operation, terrified of the potential complications, terrified by all of the stories I have heard and read about shunt malfunction but most of all -  terrified it will not work.
See truth be told - I am tired. Very tired!! Tired of being sick, tired of being in continual, non-stop agonizing pain, tired of being tested, poked and prodded and tired of watching my family watch me go through this.
I would not wish the ups and downs of this horrible "disease" upon anyone.
My poor sweet babies do not deserve this. Sometimes I feel like if I would just forget about it or suck it up - it would be so much easier on them. But then I have to remind myself that recognizing my limitations is what allows me to be able to get up and move forward with each day. It doesn't determine how fast I will move... just that I am moving and for right now I guess that's all I can ask.

What is normal....?

Well I think my get up and go has officially got up and went!
 I am really struggling lately with getting motivated to do anything that involves any effort on my part. Simple routine tasks, like getting out of bed in the morning, have become a complete struggle.
I am having an extremely difficult time getting adjusted to my medications and the new dose they "upted" me to. This past week I have felt like I had the flu (achy and sore all over), my throat is raw and has the appearance of ground hamburger meat and I am still having trouble breathing. (It's kind of hard to breathe when it feels like an elephant has planted his large rear on my chest!)
At my last visit with my doc he told me this was all normal and until they can get my meds leveled out and work out all the kinks, I would most likely feel this way. I just love being the one they choose to be the kink worker outer. I mean what a huge honor! "Routine blood work, close monitoring and daily supplements will all assist us in ensuring that we are on the right track." Blah..Blah.. Blah..
One thing he did tell me that was kind of surprising was that something I had told him previously, not sure what that was, made him pull the re-cap of my pathology report from my brain surgery in 2007. The report stated that the fluid taken from within the cyst had "a motor oil constancy", which apparently is not typical of a AC.
So, I am sure you know what my response to him was - "What is it typical of?"
His response - "Not sure".. What? How can he be not sure? I mean how does a motor oil consistency substance get into your brain and more importantly what is it? AGAIN - "NOT SURE"!!!
What he did assure me of was that he would be looking deeper into it and getting the full report to see if was able to shed any new light on the subject. Please, doc shed some light!!
You can imagine my surprise, as this was the first time I was told this. Why was this never mentioned before? and more importantly how come no one has ever looked into it? I mean I have know for a long time that I do not have the biggest brain on the block, but now you are going to tell me I have some sort of oily sludge inside my brain. Great!!
When I questioned him about why it is so difficult to just go in and remove the entire 5 quarts he told me is is not that simple. Seems that not only do I have a forgein substance lurking in the depths of the nooks and crannies of my main control panel, I also have a zero chance of having the navel sized cyst completely removed due to its overly complicated location.
My next question: "Is this a ongoing battle I will have to continue to fight for the rest of  my life?" ANSWER: "Yes, Mrs. Smith, I am afraid so. I am so sorry." It will never get better and it will never go away. Regardless of how many operations, I may or may not need. My only hope at a somewhat normal life is medication, and lots of it, to try to stabilize the situation and testing to continue to learn as much as we can about my conditions.

While completely depressing news to hear, I have always know deep down inside that this was the case. I have always just been to afraid to ask. So after taking it all in.. my response "You don't know MY GOD because if you did you would know that with Him all things are possible!"
Smiling doc told me - " I know Your God, I know you and I know your not giving up without a fight. But I will say that is the first time I have ever, in all my years of practice, had a response quite like yours, but then again I have never had quite a patient like you either." I guess I will take that as a compliment!

Praise God for blessings we understand and Praise God for giving us the strength and direction during the times we don't.

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

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