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Forever Changed

Have you ever forgotten about an entire pound of butter in the car? How about in your purse? As of today, I have. Yesterday evening I stopped by my parents’ house to grab some things to make cookies, my mom handed me an entire pound of butter and I left. A couple of hours later I remembered the butter, looked in my car for it, but couldn’t find it so I figured I forgot it at my mom’s.  I found the butter… in my purse, melted… To say it was a crappy situation would be an understatement. Thank God for my mom, she helped clean up the mess and gave me a huge hug because she knew as soon as I drove off in my car, the tears would start falling.

At seventeen I went in for a routine eye exam as I had noticed some changes in my vision and needed glasses. While at the eye doctor, my optometrist noticed my different color eyes, different sized pupils(miosis), and the noticeable droop in my left eyelid(ptosis). He explained it was a condition called Horner’s Syndrome. He asked if I noticed any decreased sweating on one side and loss of sensation, I had both. Horner’s syndrome is a rare congenital condition caused by a defect in the sympathetic nerve to eye. My Horner’s diagnosis is much different than a ‘normal’ diagnosis because instead of my loss of sensation being confined to my face, it affects my entire left side of my body; I also don’t sweat on my left side, at all.

Shortly after my eye exam, I was seen by Dr. E at Valley Children’s Hospital, who ran a bunch of tests and explained that my brain was free and clear of any tumors or abnormalities. Fast forward to January 2013. One morning, after surviving a very traumatic experience, I woke up with a terrible migraine. It wasn’t like anything I had experienced before, as migraines were a weekly occasion at that time. I couldn’t see out of my left eye, lost movement on my left side, had the most intense pain in my head. I drove myself to the emergency room at Clovis Community and was immediately put on stroke protocol for the next twelve hours. I had a brain CT, brain MRI and eventually a MRA. It was late at night when Dr. O came in to talk with my dad and explain that my MRA showed something a little different and that he wanted to show him in person. Dr. O and my dad did their residency together many, many moons ago. Dr. O pointed out to my dad that I was not only missing a communication artery in my brain, but that I also had cerebral arterial atresia on the left side. Cerebral Arterial Atresia is distinct narrowing of the arteries in my brain, it can cause a number of issues, including loss of movement on one side of the body.

I went back to see Dr. E after my ER visit and he explained that I would have routine brain MRI’s to ensure everything was clear and would also start me on Topamax 50mg for my migraines. Since that day in January 2013, I’ve been on stroke protocol two other times, the most frequent being January 2016. While at work, I noticed a sharp, stabbing pain in my eye and head. I slumped into a chair in my dad’s office and started slurring my speech, I couldn’t hold my head up, and mumbled words that didn’t make any sense. My mom rushed me to Valley Children’s Hospital, as that is where my previous neurologist was still working and I had been unable to find an adult neurologist who was willing to take on a high risk patient. Once at Valley Children’s, I experienced some of the worst bedside manner, ever. It wasn’t until our family friend R came into the room that the doctor and nurses began to take me serious. The doctor thought I was faking my condition and actually made a comment about my mental state because I was in a pediatric hospital, well my condition is pediatric, so that’s what I was always told to do.

A short time later, my chariot arrived and I was taken to St. Agnes, where I had the most amazing ER nurse. While on the way to St. Agnes, the EMT’s and Paramedic’s that I was in the company of, couldn’t get over my symptoms, including my loss of movement and sensation. What really made their night was continuously poking my left foot with a pen, only to realize I wasn’t feeling anything, not even a twitch. Once at St. Agnes I was put on stroke protocol again and eventually was admitted for a two-night stay. Talk about an experience. My nurses were amazing, the doctors on the other hand weren’t the greatest. The on-call neuro came in to see me and asked me a series of questions and after a brief visit, he concluded that I was just stressed while finishing up my graduate degree. That was it, it was stress. Shortly thereafter a psychologist came in to talk with me about my ‘stress’ and after explaining this wasn’t stress, he agreed and said that as soon as I regained movement on my left side, I would be released.

Here is what I forgot to mention; while in the ER my nurse informed me that my potassium level was dangerously low, he wasn’t sure how or why, but it was. As my stay at St. Agnes progressed, my nurses would continuously tell me that my potassium numbers were not increasing regardless of the horse pills they would give me. I was given a potassium infusion, HOLY MOLY BATMAN, those things hurt! It feels like your arm is being burned off and there wasn’t anything I could do about it. After the infusion, I noticed a slight twitch in my left thumb, which hadn’t moved for over a day. I mentioned it to the nurse who wanted to see if I would have more movement after my next dose and guess what? I did! I started physical therapy within a couple hours of my twitch and was discharged the following morning, to say I was happy to head home would be an understatement.

Hypokalemia is most prominent in mild cases, with most numbers returning to normal after oral therapy, however my case of Hypokalemia is severe. I take two large doses of potassium every day and still have a bad deficiency. Hypokalemia mixed with something called Hemiplegic Migraine made my symptoms mimic a stroke. I’ll give more information about my hypokalemia at a later date but it just shows that my body is just down right defiant.

I still have yet to find an adult neurologist who will accept me as a patient and as of late, that’s a real issue. I forget things multiple times a day and not in a normal, oh I forgot, like I forget things immediately after they happen. I won’t remember why I walked into a room, what I was doing, what I was talking about, what day it is and so forth. These moments happen daily and for someone who has always had the memory of an elephant, it scares me.

Xoxo, Julie

2 comments on “Forever Changed

  1. Grandma cookie says:

    Read all of your blogs sweetheart and broke my heart. I want you to know I’m here for you whenever you need me I know how private you and mom are but want you to know I am available anytimeLove you both and wish them a very successful run


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