The Other Side of My Great Morning: A Plumbing Analogy
A STORY ABOUT MY KITCHEN SINK:
Picture a kitchen sink with two sides. Each side has a drain. Typically each drain would have a pipe that runs down and the two pipes would meet underneath the sink to connect and form one bigger pipe that drains to the ocean just like in 'Finding Nemo'.
Now picture that the left pipe is missing.
And the water is on.
The water is still able to drain, though.
Now over the years the pipe on the right side starts to get a little build up. Maybe some oil and grease coat it a little. You don't notice as it happens because it is gradual.
The water can still drain.
It just drains a little slower.
Over time even more build up.
A little slower.
More build up.
Over time a little slower.
Get the picture?
In this scenario, imagine in this scenario that the water can never be turned off and eventually you realize the water does not drain like it used to.
The water is not able to get down the drain and is backing up into the sink. Maybe there is an overflow hole that allows it drain anyway but eventually you know that can get backed up, too, and then what? What if there is no overflow holes?
Now -- why am I talking about this?
Did I neglect my plumbing?
No.
Imagine the pipes are veins.
Imagine the sink is my brain.
Specifically, the missing pipe is my left transverse sinus.
Isn't that wild? I have some really cool pictures to show you!!
Anyway---
HERE IS WHAT WE KNOW SO FAR:
1. My sink is full because one pipe is slightly clogged and one of the others is just missing and the water doesn't shut off.
(Medical terminology: Intracranial Hypertension ---Hypoplastic/Aplastic (Non-imaged) Left Transverse Sinus, Small Left Sigmoid Sinus and Small Left jugular with possible stenosis at junction. note, Cerebral fluid replenishes daily at rate of about one liter/day).
2. It could have been something I was born with. It could have been something that happened. We may never know. It doesn't matter for me how it happened, I just want to definitively find out what can be done to move forward, but more specifically, if it is something that is possibly familial or hereditary so I can keep watch for my girls and other family members.
2. MRI (MRA/V) revealed NO tumors, NO Cancers, NO aneurysms suspected - Praise GOD!
3. Medications: the first neurologist prescribed/recommended a bunch and I am on a few, however, we aren't willing to simply jump into a lifelong medical route until other possibilities are looked into. A better life through chemistry is A-OK however, we have consulted experts and in my case there is likely a physical underlying cause that can be fixed with physical intervention and we are seeking those options before choosing one definitive route. At this time, I am continuing a life of quality whole foods first, proper exercise as tolerated, sleep and stress management and the world's finest supplementation. (Please don't message me with your medication recommendations unless you are Dr. Stanley Dudrick or his equivalent. I mean, I will thank you kindly, but I assure you I have reached the end of the google-machine already and have probably already looked it up, downloaded the info and have it prepped for my new neuro team and the second/third opinion docs on my calendar)
4. I have had off the record second opinion conversations with two experts not in my geographic region who urged me to get a venogram for suspected Dural Arteriovenous Fistula based on the following symptoms: Bruit, Unilateral Pulsatile Tinnitus, Headache, Visual Impairment, Intracranial Pressure. I have an appointment Monday with my new neurologist (I fired the first one). This new one can only refer me to the Interventional Radiologist who can get these tests...but it is another step closer. If anyone has an in to get me these tests quicker, and can get it billed through Tricare, I have a car, I will travel.
**Applied to Johns Hopkins Pseudotumor Cerebri clinic, awaiting appointment dates.
5. This is not a cry for help. This is to show that Facebook and Instagram only show you what you think you see. My life is blessed and we are loving it, but it isn't all vacations and easy days. There are messes and stresses just like every one else.
This is not a cry for help, you probably can't help me and if you could let's be real I probably wouldn't accept it. But, I am learning to let people in a little more in times like these, so here you go.
6. There is probably more. My brain is fried. (yep we do brain jokes now, lots of brain jokes)
Truth is, though, most days I still do most of what I always did, albeit, some days differently than I used to. I homeschool the girls. I run our own business. I am pursuing a second Masters Degree (**update, I completed the class and withdrew from school. Building our business is a better use of my time). I serve part time as a volunteer staff member with Safe House Project. I am a member of a life group at our new church. So, yeah, I do stuff. I don't "lift heavy" right now and I don't go on long runs alone. I am so significantly blessed that I rarely have to wake up to an alarm and get out of the house in a hurry because mornings are the most difficult. The fluid in my brain settles at night and displaces pressure differently. I wake with different types of headaches and neck aches and weird sounds and brain fog. But I get up when I need to, I drink Spark and I do the things. Not everybody can.
I can so I do. (OK Truth--- at least a couple days a week Clara gets me my Spark and brings it to me in bed!! woot!! win!!)
WHAT IS DIFFERENT TODAY THAN SIX MONTHS AGO?
No more burpees: I loathe them anyway and use this as an excuse really.
No more skydiving: I passed out when I went skydiving in 2001 and get motion sickness from pretty much everything including dancing if I spin too much because I literally have too much fluid in my head at all times and the pressure changes effect it. I went skydiving a second time a few years after that, didn't pass out and never planned to go again anyway, so I am fine with it, anyway. I will save that for Joe, Pina and the crew.
No chance I can be an astronaut: I won't pass the High-G training but if you read the skydiving comment from above you could have already guessed this and the one time I was put in one of those at a space camp simulator I asked them to stop after like 12 seconds, so... yeah.
OK BUT FOR REAL, WHAT'S DIFFERENT : Not "normal": I now know this is not how everyone else lives.
Daily headaches are not "normal".
Double Vision is not normal. I didn't even know I have double vision. Literally. I have double vision and had no idea. I thought I just had "not perfect" eyesight. I was asked by my neurologist if I have double vision and I said, "no". A few weeks later I powered on my new MacBook and the white screen with only a light grey apple logo came on. It was VERY clearly two Apple logos to me. I asked Joe, "Do you see two Apples?". He said, "no". I repeated the question differently. "You don't see two separate Apples here?"."No", he said. I did. Not slightly blurred lines of one apple. Two very distinct apples. And then I noticed it everywhere.
Light-headedness when working out is not normal.
Unilateral Pulsatile Tinnitus that can be stopped when I press on my jugular is not normal. OK, I knew this, but... more than this, the medical community is just now starting to really recognize that this is NOT "tinnitus" as in not "ringing in the ears". This is totally different. This can represent a significant medical issue.
Pretending to be OK: Actually I am learning that this is actually pretty typical but it shouldn't be. Our bodies are not designed to feel like crap. Our bodies are designed to heal. Our bodies are designed to be engines. When not running optimally it lets us know. We need to listen.
There is probably more but I can't remember it right now: This is a filler spot for later
A DAY IN THE LIFE OF ME:
Right now most my "headaches" are controllable and less frequent than they were a few months ago. Most days I function just as before. Most days I have adventures and spend more time with my girls than most other parents get to. This "thing" isn't affecting our life as much as it could, but it is not what "normal" should be and we are going to figure this thing out.
I am “the helper”. The helper doesn’t want others to see their mess.
History has proven, however, that my mess has always revealed His message so I will give a little glimpse into the other side of life for us more and more.
I recently heard a dear friend say “All mornings are great. It is my choice how I see my morning. I’m here and blessed, so all mornings are great”.
So, I have committed to adopt his philosophy. The philosophy of Yoder. All mornings are great.
Today was a great day because I woke up for the 15,285th (or so) time.
For many people, today would not be considered a great day.
I could barely open my right eye from my "headache", I couldn’t "hear" out of my right ear due to “whooshing” from my pulsatile tinnitus, and I needed extra time for my vertigo to subside.
(I put all those words in quotes because those words don't exactly describe it correctly.) Only those who "get it" will get it and that is ok.
When I finally got downstairs, I got my daily morning cuddle with Clara and the day proceeded just as "normal" as it ever will for us. Because, who really wants "normal" anyhow?
Update January 1. 2019---- Still going through day to day life with this, haven't made much progress. Most days are great, some days suck. I am waiting for my call to go to Johns Hopkins, still not getting the support from the medical team locally---- but --- I have grown mentally stronger and know I will overcome so that my story will be one of perseverance and grace.
**Note to professional writers; how many writing styles can you count in this one blog post?
First drafts are always fun. This was is getting published as is. I may or may not return to edit it later.
Picture a kitchen sink with two sides. Each side has a drain. Typically each drain would have a pipe that runs down and the two pipes would meet underneath the sink to connect and form one bigger pipe that drains to the ocean just like in 'Finding Nemo'.
Now picture that the left pipe is missing.
And the water is on.
The water is still able to drain, though.
Now over the years the pipe on the right side starts to get a little build up. Maybe some oil and grease coat it a little. You don't notice as it happens because it is gradual.
The water can still drain.
It just drains a little slower.
Over time even more build up.
A little slower.
More build up.
Over time a little slower.
Get the picture?
In this scenario, imagine in this scenario that the water can never be turned off and eventually you realize the water does not drain like it used to.
The water is not able to get down the drain and is backing up into the sink. Maybe there is an overflow hole that allows it drain anyway but eventually you know that can get backed up, too, and then what? What if there is no overflow holes?
Now -- why am I talking about this?
Did I neglect my plumbing?
No.
Imagine the pipes are veins.
Imagine the sink is my brain.
Specifically, the missing pipe is my left transverse sinus.
Isn't that wild? I have some really cool pictures to show you!!
Anyway---
HERE IS WHAT WE KNOW SO FAR:
1. My sink is full because one pipe is slightly clogged and one of the others is just missing and the water doesn't shut off.
(Medical terminology: Intracranial Hypertension ---Hypoplastic/Aplastic (Non-imaged) Left Transverse Sinus, Small Left Sigmoid Sinus and Small Left jugular with possible stenosis at junction. note, Cerebral fluid replenishes daily at rate of about one liter/day).
2. It could have been something I was born with. It could have been something that happened. We may never know. It doesn't matter for me how it happened, I just want to definitively find out what can be done to move forward, but more specifically, if it is something that is possibly familial or hereditary so I can keep watch for my girls and other family members.
2. MRI (MRA/V) revealed NO tumors, NO Cancers, NO aneurysms suspected - Praise GOD!
3. Medications: the first neurologist prescribed/recommended a bunch and I am on a few, however, we aren't willing to simply jump into a lifelong medical route until other possibilities are looked into. A better life through chemistry is A-OK however, we have consulted experts and in my case there is likely a physical underlying cause that can be fixed with physical intervention and we are seeking those options before choosing one definitive route. At this time, I am continuing a life of quality whole foods first, proper exercise as tolerated, sleep and stress management and the world's finest supplementation. (Please don't message me with your medication recommendations unless you are Dr. Stanley Dudrick or his equivalent. I mean, I will thank you kindly, but I assure you I have reached the end of the google-machine already and have probably already looked it up, downloaded the info and have it prepped for my new neuro team and the second/third opinion docs on my calendar)
4. I have had off the record second opinion conversations with two experts not in my geographic region who urged me to get a venogram for suspected Dural Arteriovenous Fistula based on the following symptoms: Bruit, Unilateral Pulsatile Tinnitus, Headache, Visual Impairment, Intracranial Pressure. I have an appointment Monday with my new neurologist (I fired the first one). This new one can only refer me to the Interventional Radiologist who can get these tests...but it is another step closer. If anyone has an in to get me these tests quicker, and can get it billed through Tricare, I have a car, I will travel.
**Applied to Johns Hopkins Pseudotumor Cerebri clinic, awaiting appointment dates.
5. This is not a cry for help. This is to show that Facebook and Instagram only show you what you think you see. My life is blessed and we are loving it, but it isn't all vacations and easy days. There are messes and stresses just like every one else.
This is not a cry for help, you probably can't help me and if you could let's be real I probably wouldn't accept it. But, I am learning to let people in a little more in times like these, so here you go.
6. There is probably more. My brain is fried. (yep we do brain jokes now, lots of brain jokes)
Truth is, though, most days I still do most of what I always did, albeit, some days differently than I used to. I homeschool the girls. I run our own business. I am pursuing a second Masters Degree (**update, I completed the class and withdrew from school. Building our business is a better use of my time). I serve part time as a volunteer staff member with Safe House Project. I am a member of a life group at our new church. So, yeah, I do stuff. I don't "lift heavy" right now and I don't go on long runs alone. I am so significantly blessed that I rarely have to wake up to an alarm and get out of the house in a hurry because mornings are the most difficult. The fluid in my brain settles at night and displaces pressure differently. I wake with different types of headaches and neck aches and weird sounds and brain fog. But I get up when I need to, I drink Spark and I do the things. Not everybody can.
I can so I do. (OK Truth--- at least a couple days a week Clara gets me my Spark and brings it to me in bed!! woot!! win!!)
WHAT IS DIFFERENT TODAY THAN SIX MONTHS AGO?
No more burpees: I loathe them anyway and use this as an excuse really.
No more skydiving: I passed out when I went skydiving in 2001 and get motion sickness from pretty much everything including dancing if I spin too much because I literally have too much fluid in my head at all times and the pressure changes effect it. I went skydiving a second time a few years after that, didn't pass out and never planned to go again anyway, so I am fine with it, anyway. I will save that for Joe, Pina and the crew.
No chance I can be an astronaut: I won't pass the High-G training but if you read the skydiving comment from above you could have already guessed this and the one time I was put in one of those at a space camp simulator I asked them to stop after like 12 seconds, so... yeah.
OK BUT FOR REAL, WHAT'S DIFFERENT : Not "normal": I now know this is not how everyone else lives.
Daily headaches are not "normal".
Double Vision is not normal. I didn't even know I have double vision. Literally. I have double vision and had no idea. I thought I just had "not perfect" eyesight. I was asked by my neurologist if I have double vision and I said, "no". A few weeks later I powered on my new MacBook and the white screen with only a light grey apple logo came on. It was VERY clearly two Apple logos to me. I asked Joe, "Do you see two Apples?". He said, "no". I repeated the question differently. "You don't see two separate Apples here?"."No", he said. I did. Not slightly blurred lines of one apple. Two very distinct apples. And then I noticed it everywhere.
Light-headedness when working out is not normal.
Unilateral Pulsatile Tinnitus that can be stopped when I press on my jugular is not normal. OK, I knew this, but... more than this, the medical community is just now starting to really recognize that this is NOT "tinnitus" as in not "ringing in the ears". This is totally different. This can represent a significant medical issue.
Pretending to be OK: Actually I am learning that this is actually pretty typical but it shouldn't be. Our bodies are not designed to feel like crap. Our bodies are designed to heal. Our bodies are designed to be engines. When not running optimally it lets us know. We need to listen.
There is probably more but I can't remember it right now: This is a filler spot for later
HOW DID I KNOW OR WHAT HAPPENED TO MAKE ME START QUESTIONING?
1. I GOT LIGHTHEADED WORKING OUT: This happened on and off throughout my life and I always backed off during the work out but then pushed through. Kind of a metaphor for my life. Going through some of the "things" I went through in life I learned that it is best to just slow down, not complain, finish the task at hand. And many times in doing so I actually got commended for it. "Hey, Seaman Recruit Grey kept running while she was puking, be like her!"
Anyway, I got lightheaded this spring and decided it just wasn't "normal" any more. I was in the best shape of my life, eating right, sleeping right, taking the best supplements. Something was just not right.
2. I WAS SICK OF NOT FEELING THE DIAGNOSIS WAS EVER RIGHT: "Take Motrin" ...."It's Depression"...."Take Motrin".....While in the Navy I went to medical for many different things, quite a few were recurring. Looking back over my records, it was evident that just about every doctor was quick to diagnose and prescribe meds, few would go slow and really go over past medical history to try to link everything and anything together to find a long term underlying root cause to analyze or something like that.
3. WHEN I STARTED DIGGING: There were items in my medical record I never knew, hadn't remembered or needed reminded of the dates so I could align onset of symptoms.
I had lightheaded/dizzy spells a few times in my career. The medical teams did EKGs or stress tests and noted "normal" heart stuff except for some regurgitations but didn't check for brain stuff.
My Pulsatile Tinnitus began when/right after I was in the hospital having Clara coinciding with my first increase in blood pressure.
An MRI from 2010 revealed the "missing" veins in my brain. It could be congenital, meaning I was born that way, or it could have been something that happened as a result of something during my life- who knows?
A DAY IN THE LIFE OF ME:
I am “the helper”. The helper doesn’t want others to see their mess.
History has proven, however, that my mess has always revealed His message so I will give a little glimpse into the other side of life for us more and more.
I recently heard a dear friend say “All mornings are great. It is my choice how I see my morning. I’m here and blessed, so all mornings are great”.
So, I have committed to adopt his philosophy. The philosophy of Yoder. All mornings are great.
Today was a great day because I woke up for the 15,285th (or so) time.
For many people, today would not be considered a great day.
(I put all those words in quotes because those words don't exactly describe it correctly.) Only those who "get it" will get it and that is ok.
When I finally got downstairs, I got my daily morning cuddle with Clara and the day proceeded just as "normal" as it ever will for us. Because, who really wants "normal" anyhow?
Update January 1. 2019---- Still going through day to day life with this, haven't made much progress. Most days are great, some days suck. I am waiting for my call to go to Johns Hopkins, still not getting the support from the medical team locally---- but --- I have grown mentally stronger and know I will overcome so that my story will be one of perseverance and grace.
**Note to professional writers; how many writing styles can you count in this one blog post?
First drafts are always fun. This was is getting published as is. I may or may not return to edit it later.
Comments
Post a Comment