My crazy brain
Updated: Jan 20, 2021
Nothing is more beautiful than a real smile that has struggled through the tears. ~unknown
My diagnosis story:
This is a very difficult post to write, to spell out one’s life by choosing the best words to describe your very existence.
I feel like I’m traveling backwards down a dark road with a flash light while shining it here and there on the truly important moments of my life.
It can be a daunting task, but I will do my best.
I should start this with the big reveal - I have been given a life sentence.
I have idiopathic intracranial hypertension (iih) aka pseudotumor cerebri.
Fancy schmancy words aside, it is a rare brain disorder that poses many health risks both short and long term.
In a nutshell, my body produces high levels of cerebrospinal fluid which causes pressure in the brain, spine, and on the optic nerve.
These symptoms can lead to blindness (or vision loss that is sometimes permanent), headaches, blind spots, poor peripheral vision, ringing in the ears, and neck and shoulder pain.
Before you feel sorry for me, please don’t. I don’t feel sorry for myself. It has been very difficult to live with, but I took my odds and made my lemonade from the many lemons thrown my way.
I have been a relatively healthy person my entire life. I was diagnosed with polycystic ovarian syndrome (PCOS) back when I was a teen and when it was time to start trying to get pregnant, PCOS made it quite difficult.
My husband and I went on fertility treatment and in February 2010, I became pregnant. That would be miracle number one!
In the beginning of my pregnancy, I noticed that I started having visual problems and headaches. They went away after my 2nd trimester started so I didn’t think much of it. October 2010, our son, Patrick, was born. Miracle number two!
On Thanksgiving Day 2010, I had an ocular migraine and my back started to hurt. I drank coffee, took migraine medicine, and went to sleep. Next morning, I felt fine.
Jump to March of 2011; after months and months of head and spine pain and a stiff neck all the time, I decided to go to a neurologist. Meds and MRIs. No brain tumor. Yay.
I started to have problems moving my neck and smiling. Something is not right.
I am now experiencing excruciating pain (imagine one of those squeezable stress “heads”. You squeeze it and the head gets bigger and the eyes bulge out, ready to pop). But, I had a new family and I had to work: suck it up.
In June 2011, I was skyping with my sister, and I told her that I couldn’t see her face.
I decided to make an appointment with an ophthalmologist that specializes in eye injuries.
He took one look at my optic nerve and told me to go straight to the ER and get an MRI.
He was worried that I had a brain tumor and explained that an optic nerve should look like a cheerio with solid borders. Mine looked like a drop of paint on the paper after you drop water on it. It spreads and isn’t clear.
Straight to the ER and I got the privilege of having my first spinal tap (of many).
It was a “beaut”. All eyes on me walking through the hospital, I mean, being dragged by my husband. I sobbed (loudly) and looked like an adult throwing a two-year-old temper tantrum. I was terrified, and I didn’t care who saw me.
I was officially diagnosed that day with iih. For the next year and a half, I lived in perpetual pain. Nothing would relieve the headaches and my vision was failing. Finally, in February 2013, I had my first brain surgery and had a ventriculoperitoneal (VP) shunt placed to drain the fluid.
2013 was my brain surgery year. 4 total.
I had complications and thus spent most of the year in the hospital or recouping on the couch.
My last (and most successful) surgery was in November 2013. I finally felt like a new person. Even though the surgery went smoothly, I will (forever) have vision loss and damage that is irreversible.
I can still go blind one day. I still have days that I can’t move. I still have that gnawing fear that I may have to have another surgery again one day.
I have learned how to cope, go day to day, and found excessive joy in my life.
One thing about me is I have always lived my life with an optimistic point of view.
So, in all the struggles, I will always search for the rainbows in the storm.
Mushy gooshy? Maybe, but it has saved me (mentally) numerous times when I have thoughts of quitting.
During my year of couch surfing, I spent lots of time looking at pictures and videos of Europe.
I knew that I wanted to go to far off places, so I spent time fantasizing about another life I wanted to live, not the one I was experiencing at the time.
I then told my husband, I am going to travel to far off places. I am going to tell my iih “friend” to shove it.
I can’t control what my body is now naturally doing, but I will make the most out of my diagnosis.
Fast forward to my first domestic flight post surgery
It was about 8 months after my last surgery and I sat on the tarmac, ready to fly: TERRIFIED. I do not have a fear of flying, but that day, I worried that once we were to take off, my head (or shunt) would explode. So… I waited. I prayed. I put my music in my ears and I sang to myself. I thought, “This is it. This is the moment of truth.”
The plane moves forward, and I start to silently cry. I can’t turn back now. The plane lifts off. So far so good. Head is still intact. We rise higher and higher. No headaches. No visual issues. Shunt must still be working.
I start to breathe. I wait. We reach altitude. No exploding head! Miracle number three. I start to laugh and “happy” cry. I can fly! I can travel! I could’ve leaned over and kissed the passenger beside me.
World! Here I come! Now.. I am ready to go… I will not be stopped.
Yes, I have a life sentence, not a death sentence! What have I done with my diagnosis? Funny you should ask!
I took on the most amazing role: I home school our son.
I am still able to interpret and now also interpret from home.
Hubby and I have really connected over these years. He went through alot with this. He stuck to the most important vows: for better or for worse and sickness and in health. I’ve really learned to lean on him, and I know that it is ok to ask for help. (Plus he gives some awesome hugs).
Since my head was shaved so many funky ways, I decided I would learn to cut my own hair. Gotta love YouTube and Pinterest!
I have traveled like a mad crazy person: To Ireland (twice in one trip), to Scotland (three times), to London, to Switzerland, and Austria. Now, I am about to embark on another journey to Austria and Scotland in a few weeks. Stoked!
While in Ireland and Scotland, we rented a car and have clocked thousands of miles and lots of fun memories.
Connie and I have launched our blog and vlogs (www.thistlesandcoos.com)
Connie helps me not be so rigid and “go go go” so in this, let it go and have less headaches! Laugh a little more when we make “mistakes”... only to be later made into funny stories for you to read!
I have learned so many meanings in life. Look for the positive. When the Lord closes a door, He opens a window.
I have no idea what tomorrow holds, but I do know that I’m loving this travel journey!