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.

Count your BLESSINGS.........

Ever been so tired of being so tired? So completely exhausted at the end of the day that your not quite sure how you will make it through?

Well that's exactly  how I have felt lately. Acting as a single parent, being so swamped at work and continuously feeling worse each day has only added to my exhaustion. I have quickly learned that not even caffeine injected directly into my veins seems to help!
Since my last post I have had several more tests, including a MRI of brain and cervical spine. While this is one of the easiest test to take, it is the one that I hate the most, partially because it is the one that delivers the worst results. While the results are often the same, it the direction that my neurologist takes that varies depending upon how large the monster in my head has become. This go around - the news was what I expected....... a change in size.

After all I have had to endure over the last several years, I have learned to become fully aware of my own body, my limitations and most importantly when something just isn't right. Well my body has been telling me something was not right for a few months. I have been VERY tired and in ALOT of pain. My head and neck have hurt so bad recently that every morning when I embrace the porcelain goddess, I contemplate throwing in the towel, crawling back into bed and staying there until brain transplants become legal. But I know where that mentality will get me......in the bed, hooked to machines and a personal attendant who wakes me every 4 hours to take my vitals. While I can't deny I like the thought of a personal attendant (under different circumstances), I do not welcome all that comes with it.

Since I have been having this weird inner convulsing thing going on, nothing like those of which you see on America's Best Dance Crew, my Doc ordered a EEG a few weeks ago. The results of it were a fresh orangy smell, very messy hair and a epilepsy disorder caused by the increased pressure. I have know for several years that I have a seizure disorder that results from the AC. But most of what I experienced in the past was full fledged fish out of the water seizures. (Well except the one time I had 15 in a 5 minute time frame. Want to freak out you doctors - flop like a water deprived fish, check into the hospital for 6 days and talk like mush mouth...works every time!!) However, recently all of the convulsing has been felt on the inside with very little outward activity. I probably would not even have realized it if it were not for Corey saying I was zoning out and twitching one night when we were sitting together on the couch. I know what your thinking but I was not intentionally zoning out....not this time anyway. After that I became more in tune to what I was feeling. Now,   I wish I would have just continued to zone out, so much easier when you don't acknowledge there's a problem.

DENIAL...DENIAL...DENIAL...

More recently - today I had to have a visual field and the pressure checked in my eyes. Poor Man's MRI, or so the Opthamologist says. It showed that since my last check up, over 45% more of the peripheral vision in my right eye has been lost and reiterated exactly what my doctors have told me. Again, not a real shocker since I have been experiencing some visual disturbances. When I say disturbances I am referring to the little man who keeps flickering the light on and off in my right eye and then he leaves and forgets to flip the switch back to the "on' position prior to his departure. It's kind of like when your taking a shower and your kids think its funny to turn the light off and run out of the room laughing. Takes a little while for your eyes to adjust but when they do..... you rinse the burning soap out, search for a dry towel to dry off and race to catch those little boogers. At this point I am still trying to get the burning soap out.

And it's the little boogers that keep me going. That MAKE me get up each day, FORCE me to face what it holds and REMIND me to thank my Creator for blessing me with them. Because without them, well I am not sure I want to go there.

"Thank God from whom ALL BLESSINGS FLOW!!"

"Cast your cares on the LORD and he will sustain you; he will never let the righteous be shaken" Psalm 55:22

Many Blessings,
Jessica Smith