Medical anomaly

I was told in 2008 when they found I had pancreatic cancer that less that 1% of people have the type of cancer I had.

I'm not a fan of being in the 1%.  But here I am again...in the land of new science, being a medical mystery, one that I hope has a solution but for now the solution is pretty unclear.

Here is what we found out on our second trip to Houston.

The PFO--hole in my heart-- is most likely the cause of the chronic migraines.
It is 2mm but is considered a Grade 4 which means its a small hole but its letting the largest amount of blood through to where it shouldn't be.  That blood is unfiltered because of going through the hole and it goes straight to my brain.  All those unfiltered things in my blood are making my brain go haywire, thus chronic unbreakable migraines...

The PFO can be closed in some cases--usually they will not close it unless you have had a stroke. (Stroke is a big risk for people with PFO).  This closure procedure is still a possibility for me but its not an easy road to choose that path.  The idea is if you fix the hole, stop the bad chemicals from getting through, maybe stop the migraines--but there is no guarantee that this will be the solution.  The procedures have had mixed results in regards to it helping migraine suffers.  We are basically waiting for science to catch up.  I was told by one neurologist that even 5 years ago they didn't even realize there was a correlation between PFO and migraine.  

The PFO problem left us with the option to try more medications to try to stop the migraines and start taking an aspirin a day to avoid a stroke.  Everyone should learn the signs of a stroke...
http://www.strokeassociation.org/STROKEORG/WarningSigns/Stroke-Warning-Signs-and-Symptoms_UCM_308528_SubHomePage.jsp

Then to further complicate things they also found that I have something called Postural Orthostatic Tacycardia Syndrome or POTS.  This is probably one of the sources of all the dizzy, lightheadedness.  Basically my heart is working too hard when I am standing or sitting up to try to keep my blood pressure up.  Three things contribute to POTS--blood pressure, blood volume, heart rate.  So my job is to increase fluids, salt intake, build muscle doing exercises that are done laying down or seated, and take a beta blocker.  So I pretty much have a holey, ineffiecent heart...thank you very much.

We also saw a really brilliant gastroenterologist while we were there and he was doing some additional tests to confirm the celiacs diagnosis.

So now here are the stats since Jan 31, 2016:
I have seen 20 specialists
I have had a PET scan, 2 MRI's, a CTA, a sleep study, heart rate monitor for a day, tilt table test, TEE, Transcranial Doppler TCD, Upper Endoscopy, and had more IV's and blood drawn than I can even count--one test was 12 vials of blood.

Don't worry I wont leave you with only doom and gloom...in the midst of this we have been met with remarkable amounts of kindness and compassion.
Friends and family who have made specialty gluten free care packages
Homemade cards and notes
Gift cards to help with the cost of GF food
Offers for playdates for the kids
Friends and family sending emails, texts, and calls letting us know we aren't alone and they haven't given up on us
People offering to cover Jeremy's shifts for free so he can be in Texas with me
An envelope of cash to help cover the cost of parking, food, and gas in Texas
A free room in our relatives home, wonderful home cooked meals, and a car to borrow to get to appointments, along with countless hours of listening to us retell each doctor visit, and helping us to sort through it all
Plane tickets
Connections to get in to doctors sooner, emails and phone calls to specialists insisting they see me immediately and not in 2 or 4 months
Hotel points
A listening ear, suggestions and ideas to try
Someone to care for our kids, making them feel loved and supported while we were gone for two weeks, keeping them distracted so they didn't worry, providing endless fun and activities, letting them be kids...
We are truly and overwhelmingly blessed by all the love and support.  There are no words for what it has meant to us.

The road ahead is not crystal clear...it pretty much matches the color of the Texas flood waters we lived through.

I feel very much like the man clinging to the side of the dump truck as it charges ahead.  I imagine he was just hoping to make it through to dry land.  In many ways that is my hope.  These illnesses have wiped out my ability to control and choose how I want my life to be,  it has robbed me of many things, and yet I am still looking ahead.  I am hoping for a solution so I can be on dry land again...

Houston we have a problem

March 2016

Let's talk about Houston.

Why did we go there?
Well if you don't already know, it is a medical mecca.  There are seriously brilliant minds there.  And we have amazingly kind family who live there who offered to help us to get in to see some of the top doctors in the area of neurology and neurosurgery there so we hopped on a plane and went.
Before going we had literally been told by doctors in Colorado...
"No further follow up was needed on the cyst in my brain, but we don't know what is going on and why you are having all the symptoms you are having, see yet another specialist."
"The migraines that have been going on for 30+ days...would go away on their own,"
"There was nothing that they could find that was wrong but something was certainly wrong with me, they just didn't know what and I was in the hands of specialists to try trial and error with drugs to see what would work."

When we went to Houston with the help of my Dad's cousin and his wonderful wife we were treated with such amazing kindness.  Every doctor that we saw there gave us so much valuable information.  They had a wealth of knowledge and each one pealed back another layer of my complex case.  We came home with so many new ideas and things to try.

But then trying to transfer that knowledge back to our doctors here has proven to be a ridiculous challenge.  I am incredibly grateful for the medical community and thankful for how hardworking and professional the individuals are within that community.  But like education there are aspects about the system which bog it down and slow down the rate at which a person is able to receive the care they need.  I am not going to continue to rant about this but it has been terribly frustrating during this process.

So we came back to Colorado and tried all of those wonderful things they told us to try and there we were 4 weeks later and...the echo results are in.

Turns out I have a PFO patent foramen ovale--or a hole in my heart.  Read below for more info.

http://www.heart.org/HEARTORG/Conditions/More/CardiovascularConditionsofChildhood/Patent-Foramen-Ovale-PFO_UCM_469590_Article.jsp#.VyK1QhMrI0Q


So what were our options...at this point I am still having daily migraines.  The drugs they have tried have now failed and I am trying yet another new treatment. I still can't drive or work.  I have dizziness, blurred vision, vertigo and migraines every day and a whole host of side effects from the medications.

So we could wait in Colorado for 2 months before we could be seen by the cardiologist.  Or fly back to Houston and be seen that week by some of the top cardiologists and neurologists and gastroenterologists in the field.

With heavy hearts we packed up our kiddos and left them with their amazing Grammy and Pops and flew back to Houston.  Hoping for answers, filled with questions, and anxious to get better.

The Purge

Gluten is the devil.
Not really, but yes, it makes me really ill.  Once we found this out we went from feeling like there was nothing we could do about our situation to at least having something we could focus on.  It isn's all of the answer to all of the puzzle pieces but it is putting a lot of the pieces together for us.  We immediately set out to start purging our kitchen of ALL things containing gluten and boy was there a lot of it.  It was a bit of a panic, knee jerk reaction but when you open the cabinet and have to read every label before being able to eat something it gets a little tiresome.  So we purged.  For someone (like me) with Celiac's even trace amounts of gluten in spices, tea, condiments, etc can make a person very sick.  So not only did I need to purge anything with gluten but also the jelly jar which had a knife dipped in it to spread jelly on wheat toast and then re-dipped in to get more jelly needed to be placed on a separate shelf where I no longer used it.  Even crumbs from the toaster or the cutting board at this point can make me sick or trigger more migraines (if that is the trigger).  I read somewhere early on that 1/48th of a teaspoon of gluten can damage a person with Celiac's small intestine.  So what that means to me is--I have been eating gluten for 33 years of my life....yikes...I can't afford any more damage.  

So job #1 was get all the food separated that had gluten, purge or donate what we weren't going to use anymore.


Job #2 was to cleanse all the cooking utensils like majorly cleanse them.  I'm talking like deep clean and then deep clean them again and then maybe a third or fourth time.  Thank goodness we have a stainless steel kitchen aid mixer and pots and pans that could be scrubbed to high heaven.

Job #3 Keep purging because you most definitely missed something.  Scan and rescan items to make sure there are not hidden trace elements of gluten.  This handy little app helped a lot "The Gluten Free Scanner."

Job #4 Pin every pin on Pinterest and text your Auntie GayLynn for all her best GF and Paleo recipes and start trying them immediately after returning from the store (and yes they are delicious). 

 Job #5 Go the the store and try not to have a panic attack while you shop for new GF items because #1 they cost a fortune and #2 you have no idea what to make.

And for a little comic relief I give you the bloopers 

 

Flying to Houston my head will explode....

Crazy Eyes!!! I can't see my eyes are dilated

At the ER the 3rd time eating chips apparently this is my face for everything....how attractive ;)

Think of it like a 1,000,000 piece jigsaw puzzle

It has been easy to get discouraged along the way because there has been so little that the doctors have been able to tell me.  The medications have done very little to help and I feel very sick.  But the kindness of friends and family who have gone over and above to support us and show love has been...there are no words to explain how grateful we are for each of you.  For weeks I have not been allowed to drive or work.  Even just a text or a quick link to a new recipe to try has been so encouraging that people have not forgotten about us.  I am a private person usually and this has been especially hard to share about.  I am only opening up now with the hope that more people can have compassion for what a new struggle we are finding ourselves in...
As we learn to accept it I hope our friends can be understanding with us as we are learning and processing it all too.

Here is what I know so far.

I have had 3 trips to the ER.  They have tried every migraine cocktail of drugs in the book and nothing has even touched the pain and nothing has broken the migraine.
2 MRI's--One cyst (more on that later)
1 PET Scan--No cancer--Thank the sweet baby Jesus
1 CT Angiogram--Results normal
1 Echo cardiogram--results still pending more on that later

I have seen specialists in Colorado and Houston, TX:
5 Neurologists
3 Neurosurgeons
1 Neuro-opthamologist
1 Opthmologist
1 OBGYN
1 Endocrinologist
1 Chiropractor
1 Accupuncturist
1 Internal Medicine doctor

For now the diagnosis is: Chronic Migraines, Celiacs Disease, Pineal Gland Cyst...

Still waiting for more appointments next week and more results to be processed.  Waiting to be seen by a headache specialist at University Hospital--Anyone have any amazing connections there?      

http://www.migraineresearchfoundation.org/fact-sheet.html

https://celiac.org/celiac-disease/what-is-celiac-disease/

http://rarediseases.org/rare-diseases/pineal-cysts-symptomatic/

Where to begin...

I'm not even close to where I started this journey and too much has transpired to even try to start back at the beginning so I am going to start right in the mess of the middle of it all.  I feel exposed even dipping my toes in the water and beginning to write anything down and at the same time I feel relieved to be able to have a place to write it all down and leave it all there.  I'm struggling to accept a new reality and yet at the same time I realize it could be so much worse and I should be thankful that it isn't so much worse at the moment.

Close your eyes and imagine for a moment that feeling you get after riding a spinney ride like the cheep carnival types that spin and spin and spin so fast that it pins you to the wall and then the floor drops out and you stick to the wall of the ride as it spins and spins and spins and you try to reach to the middle but your arms are sucked the middle.  Do you remember how you felt walking off the ride?  Your head a dizzy, foggy, blurred, vertigo topsy turvy feeling.  Where you can't walk in a straight line or tell if the room is spinning or if you are still spinning?

Then think of the worst hang over headache you ever had.  Like you had way too many tequila shots on an empty stomach followed by sugary sweet fruity drinks with your girl friends.  Had late night chili cheese fries.  Came home and vomited for hours.  Woke up and had a headache a nausea that you thought would never end.   But then add the worst migraine headache throbbing, pounding, tunnel vision, aching, pounding, light sensitive, unrelentless migraine pain to that.  

Then think of fatigue.  Fatigue like you have newborn twins who are teething and who are sleep training and who are up every two hours.  But you are tormented by the fact that you are so tired can not sleep enough to feel rested.  You seriously can not even keep your eyes open but you also can not sleep kind of tiredness.  Tiredness that makes you ache all over but is not satisfied by sleep.  Rest that does not quench your fatigue.  Fatigue that makes your legs twitch and your joints ache.

These words seem so empty in trying to describe the feelings that have held my life hostage since January 31, 2016.