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.