A New Normal

My story was pretty boring until a few years ago.  I lived life exactly the way that I was supposed to live it.  I did well in school, I participated in sports and clubs, I sung in the church choir (not well), was actively involved in youth group, I went to a major university, got a job as a public-school teacher and dedicated hours upon hours to teaching and coaching young people in the great state of Arizona.  Don’t get me wrong, there was definitely more to it than those few previous sentences, but it was by and large a pretty “normal” life.  Then I turned 30 and my 30^th year was a doozy.  At first, it was exactly how everything else had gone.  I celebrated with a night out on the town with my friends, celebrating life like we did when birthdays came around, and I continued doing everything the way I was supposed to.   August 21^st, 2013 was about 3 months before I turned 31 and it is a day that I will never forget because my story was only pretty boring until it wasn’t.

I have a very distinct memory of having a very strange feeling in the back of my skull that day.  I turned to my 3^rd period class and said, “I just got the strangest headache I have ever had in my life.”  It felt like pressure, sort of like sinus pressure, but it was not in my sinuses but rather in the back of my head.  It was such a foreign experience, that I didn’t know what to do.  I popped some headache medicine, chugged a bunch of water and went on a bout my day.  When I awoke the next morning, I felt pretty normal, but it was not long before my head began to feel weird again.  On my lunch hour, I called a local massage clinic and scheduled myself a massage “I must be really stressed out or something” I thought.  The massage helped while it was happening, but as soon as I got up, the headache was back.  I awoke the next day with a plan for myself-if that headache came back, I was calling to doctor.  Maybe my sinuses were causing my whole head to hurt, and it just felt the worst in the back.  The sensation of pressure was the only thing I could understand about what was going on.  I was able to secure a doctor’s appointment for the following day when I called and contued about my day, noticing that the pressure seemed to be getting worse.  I remember that during that evening, it was Meet the Teacher Night and I was supposed to greet parents, be charming and talk about my program.  It took every ounce of energy that I had but, as far as I know, no one could tell that I was in severe (and very confusing) pain.  The next day, after school, I went to the doctor and was prescribed a medication that is generally prescribed for migraines and a pretty large dose of ibuprofen.  He definitely made light of it, calling it “just a tension headache” and those pills he prescribed did not do a dang thing for this headache I had.

After three days of the weekend (it was Labor Day), my headache had not gone away so I called in sick and went back to the doctor.  This time, they gave me an antibiotic (I was complaining of pressure, so they were wondering if It actually was a sinus infection).  That was the wrong call and I had a pretty adverse reaction to the medication.  I was physically ill 13 times that day.  It was absolutely terrible.  I did not make it in to work any day that week and on Friday, I remember calling my Mom and asking her to come over.  I really wanted to take a shower and was so dizzy that I was frightened that I would not be safe.  I just wanted someone to be there in case something happened.  I walked out of my bathroom in tears.  My head was pounding like I had never experienced before and when my Mom asked if I wanted her to take me to the hospital, I just nodded my head and let my Mom take over the decision making as though I was a small child again.  At the hospital, they gave me what they called a “headache cocktail” of medication (basically just pumped me full of drugs), told me I was probably dehydrated and sent me on my way suggesting that I make a follow up appointment with my primary care doctor and a neurologist.  As it turns out, however, that is not as easy as it sounds.  My primary care doctor got me right in, but the neurologist literally never called me back.  The day that I went to my primary doctor, I began to see double.  I had what I called a “ribbon” in my visual field that was a blur.  Seeing out of my left eye was simply not happening and I spent most of that day with my eye closed.  I had forced myself to go to work that day (don’t worry, I didn’t drive) and made my students work quietly in a dark classroom for the entire day (thanks guys, I would not have made it if you had not been so wonderful that day).  At the doctor after work that day, when I told him that the neurologist had not retuned my call, he suggested that I go to his office and sit in the lobby until he would see me.  This seemed like a pretty strange suggestion to me, so I opted for going back to the ER instead because the double vision had gotten progressively more concerning over the course of the day.  They gave me another dose of headache cocktail, but this time the order of the medication caused a huge spike in blood pressure and I started to freak out, practically crawling out of my skin.  The doctor gave me an anti-anxiety medication and I remember him putting his hands on either side of my face and saying “I cannot give you any more meds, you have to calm down on your own” and began the process of admitting me to the hospital where I spent 9 days getting scans and MRIs and MRIs with contrast and so many blood draws that I practically had track marks.  For reasons I will never quite understand, I was woken up every morning during that hospital stay at 3 am, made to get out of bed and weighed.  Finally, I was prescribed a lumbar puncture (aka a spinal tap).  The intention for me was not about testing the fluid, however, it was about testing how much of it I had.

I took two days for me to get in to the lumbar puncture due to an influx of emergent cases.  They explained the entire procedure to me step by step.  The needle would be threaded between L3 and L4 and would puncture the thecal sac, where spinal fluid is stored, and the amount of fluid that was released, as well as the speed in which it happens, would show them what my spinal fluid pressure was.  I was told that the normal spinal fluid pressure measurement should be about 25.  The measuring device goes up to 51, if I am remembering correctly.  That first lumbar puncture (by the way, I have had about 11 of them) was the second most terrifying (the first most terrifying comes later in the story).  A lumbar puncture is not technically painful, but there is a lot of pressure and that is extraordinarily uncomfortable.  The thread the needle to the sac and when the pressure is released you feel relief.  About 2.5 seconds after I felt that relief of the release of pressure, the doctor that was doing my lumbar puncture said, “oh shit!’  There was so much spinal fluid and it came so fast that it overflowed the measuring device.  The pressure that is supposed to be 25 overflowed the device that measures up to 51-that is how much pressure was being put on my brain.  Each time I had a lumbar puncture, they removed spinal fluid and gave me some relief of that pressure, but since the body constantly creates spinal fluid, it never lasted very long.  I was diagnosed with Idiopathic Intercranial Hypertension caused by Pseudotumor cerebrei.  My body, for reasons unknown, had stopped reabsorbing the spinal fluid it was constantly making and was now building up in my brain causing all of that pressure and inflaming my optic nerves and impacting my vision.

I spent the next 7 weeks out of work.  I went to neurologists, ophthalmologists and internists who all told me that the first course of action was to lose weight, the second course was medication and that the third course would be surgical but “we just are not there yet.”  I took so much medication during those days and I went back to the emergency room twice during that seven-week stint to have emergent lumbar punctures to relieve the pressure and felt increasingly more hopeless and helpless as the pressure keep coming back, and my vision just got worse.  Finally, I was referred to a neurosurgeon who literally admitted me from his office for a therapeutic lumbar puncture (this one was the most terrifying one-it was a student’s first attempt at the procedure and it did not go well….nerves hit, tears shed, medication administered to calm me down.  I did get a strawberry popsicle afterwards, which was surprisingly helpful) and, two days later, a shunt placement.  The purpose of the shunt was to divert spinal fluid into my belly so that it would no longer build up.  My vision returning to normal was something that he was not sure about, considering how long the nerves had been inflamed for.  It was quite possible that the damage was permanent.

The shunt was placed without incident and I am forever grateful for my Neurosurgeon and his Physician’s Assistant who guided me through the process and took such great care of me.  Also, the nurses in the hospital were seriously rock stars.  I went home to recover, and my vision slowly started to get better, I remember crying the day that I was able to read the numbers on the television remote.  But it did not fully return, and it never will.  What I was left with is what I call my “new normal.” Looking into the world now means looking through what seems like fog.  I wear glasses every day, and they are helpful but are unable to correct the vision completely.  I do not drive in the rain (thankfully, I live in Arizona) and I sometimes must ask people “does this look like blue to you?” when I am not sure what I am seeing.  I literally cannot see pencil written on paper unless it is very darkly done so, and my computer is flipped to inverse colors because seeing white text on a black background is significantly easier for me.  I also have a headache literally every single day.  Nothing too crazy, just a dull kind of feeling like my head is a little too full (especially when I have had too much coffee-did you know that caffeine was a cerebral spinal fluid stimulant?)  I also got a pretty large batch of anxiety.  Anxiety that it will come back and leave me completely blind this time.  My shunt is a medical marvel and does it’s job every day, but it is made by man and will break one day.  In fact, it already has once.  It maybe in two years and it may be in forty but will malfunction or stop working and I will need a new one.  And, if I don’t catch it in time, my vision could be impacted again.  This is such a terrifying thought that I checked myself into the hospital every time I had a headache that felt a little different for the first two years of this journey.  The only way they can test if the shunt is functioning is by giving me a lumbar puncture and injecting an isotope into my spinal fluid so they can watch its path through my body and out.  If it does not move, that means we have a problem.  So, every time I have a headache, I have to ask myself “is this stress?” “is this the weather?” “is this pressure?” “am I dehydrated?” “did I drink too much last night?” “did I drink too much caffeine today?” “did I not drink enough caffeine today?” “is this just a normal headache because I am a human and people get headaches sometimes?”  Every. Time. I. Have. A. Headache.

There were definitely some parts that were left out of the story (like when the neurologist I was seeing said she would fill out FMLA paperwork for me and then ghosted by leaving the practice or the nurse that told me that he was really bad at IV’s as the needle was headed towards my arm-he was right) , but the details are not the point.  They may make things more interesting, make me seem more personable or whatever, but the point is that we all have our own story.  This one happens to be mine and the result of this story was that I decided that I wanted to help guide people in theirs because I know how terrifying and uncomfortable mine is.  I have had to change the way I do things a little bit, but I survived this crazy and rare event that confuses people every time I launch into the super long story.  I figured out how to live with my new normal because human beings are so much more resilient than we give ourselves credit for and my hope is for all of us to find that resilience, even if it feels hidden deep inside of us.  Thank you for letting me share my story in this forum and I hope that it can serve as something impactful to those that read it.