Let's start at the very beginning, a very good place to start!

First, a small tangent...yes, I'm going off on a tangent before I even get started.  Trust ne, just go with it, it's less confusing this way.  (Oh, and I hope that you read the title of this post with the Do Rae Mi song from The Sound of Music in mind, otherwise you completely missed the effect.)

Anyway, remember my good friend Diamox?  Remember the tingly fingers that go along with it?  The only thing worse than tingly fingers on Diamox, are tingly fingers on Diamox IN THE COLD.  Temps have been in the single digits and negatives, which means that gloves on or not my fingers are frozen.  For whatever reason, when this gets combined with the tingles, it means nothing but PAIN.  I can't even think of anything to compare it to, it just hurts so.freaking.bad.  That is all, just needed you to know that.

Now one might ask themselves, how exactly do you know that you have a fake tumor?  How are you diagnosed with something like this??  This disease affects everyone differently, so I'm sure the process of getting a diagnoses is very different for each person, but I will share with you how I found out about mine.  In April of 2013, I came down with what I thought was just a really bad sinus infection.  I didn't have health insurance yet at my new job, so I was really excited when I was able to get my family doctor to just call in a prescription for amoxicillin.  After about 7 out of 10 days that I was to be on this, I broke out in a rash all over my body.  It really wasn't bothering me a whole lot, so I consulted with my sister-in-law, who was a nursing student at the time.  She checked with some nurses that she worked with, and they advised that I stopped taking the medicine IMMEDIATELY because at any time the reaction could become very serious and I could die, or something scary like that.  Point made, I stopped taking it and called my doctor.  I was told that I probably had enough of the antibiotic that I would be ok, but if I felt like the infection was coming back, to let them know and they'd call in a new Rx.  Mind you...through all of this I really never felt a whole lot of relief from the pressure in my sinuses, which was highly disappointing on day 7 of 10!!  Within a couple more days, I had really bad pressure under my eyes and right around my eyebrows, which I figured was clearly my sinuses.  A stronger antibiotic was called in, and a full 10 days was completed.

Did I feel better?  Not so much.  The pressure was gone from my sinuses, but it was increasing in my forehead area and making its way to the top/front of my head.  I went to the doctor, he suggested that I was having migraines and prescribed fioricet with codeine (something that I found out later is NOT prescribed for this condition because it actually causes rebound headaches).  The med took the edge off the pain, but I had to take it like clockwork.  Regardless though, the pain was getting worse and worse, to the point that I was extremely nauseous and dizzy, and could not focus at work.  I made several trips back to the doctor, and he eventually ordered a CT scan.  The scan came back clear, so my doctor decided that I must have developed migraines and would now have to deal with this for the rest of my life.  At this point, I think I was on at least 2 solid weeks of 24/7 headaches, eating either nothing or a little bit of chicken noodle soup and nothing else each day.  I think the doctor got annoyed with me because I kept coming back and he just didn't know what was wrong.  He kept prescribing different medications (which was expensive, not having insurance), with the last being a blood pressure medicine that is supposed to help headaches if you don't have high blood pressure.  Biggest waste of $90 EVER.

After about 2 weeks off work, it was decided that I would just have to suck it up and suffer through, so on the very day that I decided to go back, I was driving my daughter to school and got not quite halfway there when I realized that I couldn't tell what lane I was in, or what lane the other cars were in.  The cars that were in the left lane next to me looked like they were in my lane.  I ended up driving up on the curb on the side of the road.  I have no idea how I made it to my daughter's school, but I did.  I sent my boss a panicked text that I couldn't come in because I couldn't see, and then I called my optometrist to see if I could come in to get my eyes checked.  (Of course he was out that day, so I had to wait until the next afternoon.)  Once I calmed down, I realized that I was having double vision.  When I went to the eye doctor, he looked in my eyes and said that my optic nerves were very swollen.  I discussed everything that had happened with my family doctor and the fact that my CT was clear, and he said that he thought I might have something called pseudo tumor cerebri.  That was the first time any doctor had given me any type of possible REAL diagnosis.  He told me that he'd have to refer me to an ophthalmologist, but that they'd probably just prescribe a steroid and I'd be on my way.  I cannot even tell you how EXCITED I was that I possibly had a diagnosis, and that it was treatable.  I assumed that I would need one more appointment and then I'd get a prescription and be on my way to recovery.  I was SO wrong.

I saw the ophthalmologist 2 days later.  He looked at my eyes for all of 2 seconds and confirmed that yes, my optic nerves were swollen.  (Thanks doc, we've already established that!  Glad I just paid you $140 to tell me something I already know!)  He said that it wasn't enough to diagnose pseudo tumor and that I needed to get an MRI.  The CT doesn't show enough.  So then we had to work on getting that scheduled.  Since I didn't have insurance, I was trying to connect with a lady in the billing department to see if there was any financial assistance available.  I took several days to get through to her because then we hit the weekend and apparently she goes home very early in the day.  When I finally did reach her, she had to mail me some paperwork requesting certain documents.  I insisted I could come pick them up to speed things up, but she insisted she would just mail them.  Guess what?  They didn't go out for several days and I ended up having to pick them up anyway.  Thanks for wasting precious time lady, this is only my brain and my life we are talking about here.  No big deal!  Anyway, I get together all of my info, making a trip in to work to make copies and being unbelievably embarrassed by the fact that when people look at me they have no idea what I am looking at because my eyes are going in 2 completely opposite directions!  (If I wasn't nauseous enough already, the double vision did NOTHING to help that situation!)  I submitted my paperwork, waited a couple of days, and the lady called and told me that I didn't qualify for any assistance because it's only for people who make under X-thousand dollars per year.  (Deep breaths...I am seeing red...double red...)  WHY did I just waste all of this time...because of course they wouldn't even schedule me until we had a decision on the financial assistance, if they have a set income limit regardless of deductions?!?!?  COULDN'T SHE HAVE TOLD ME THAT TO BEGIN WITH???

Moving on...too late now.  I get my MRI done, and the ophthalmologist decides that I need to be referred to a neurologist.  Can I say pass the buck??  How many more doctors do I need to see??  They set up an appointment for me....for 3 months out. Yes, I had double vision so bad that I couldn't drive, extreme nausea so that I had to be put on medication for it just to keep WATER and SOUP down, I couldn't work or take care of my children, and I had to wait 3 months to see the next doctor??? 

Now I've been focusing on the annoyingness of being passed around and the doctors not having a clue, but there are no words to express the pain that I was in during all of this.  I could not function.  I couldn't work, I couldn't drive, I couldn't cook a meal for my family.  All of our money was going to my various prescriptions and doctors appointments, so we had no money for groceries.  My children were eating macaroni and cheese every single day for dinner.  (My son STILL cringes 8 months later when we have mac and cheese!)  When I would lay down to sleep, it literally felt like my pillow was a pile of bricks...not a neatly stacked, flat, organized pile of bricks, but a pile that was just thrown together.  Some of these bricks were probably broken in half and had nice extra sharp and pointy edges.  Every noise that my children made caused my head to scream in pain.  Don't even get me started on the dogs barking...  I would have paid anyone my last dollar to just drill a hole in my skull to relieve the pressure.  I should also add that at this point, the pain had spread from my forehead, to the top of my head, down into the base of my skull, neck, and even down into my shoulders.  (This was all dating back to when I saw my family doctor...so imagine weeks of pain 24 hours a day in all of these places.)  I was home alone all day, but couldn't read, because I couldn't see.  I couldn't watch TV, because again, I couldn't see.  All I could do was post obnoxiously on facebook about everything I was going through (with one eye closed so that I could actually focus) and cry.  I spent so much time crying by myself.  Not knowing what was wrong with me or how to fix it or if it could be fixed was SO scary.  On top of that, I was worried about losing my job, which I had just started 2 months prior, worried about how we would pay for our mortgage, utilities, and food.  It was overwhelming.  During all of this some invisible force had my skull in a vice grip, tightening it constantly without mercy.  There was a stack of books on top of my head, someone beating me in the back of the head with a baseball bat.  And I was alone.  No one knew what I was going through, how much pain I was really in, what it felt like to be in this position.  I had support from friends and family, but no one who had been in my shoes and could really KNOW and UNDERSTAND.

Not to end abruptly, but I'm realizing that this is getting extremely long, so best to end now before I lose my audience, if I haven't already.  Stay tuned for the exciting Tale of the Tap (aka the visit to the ER that involved my spinal tap...you just can't wait can you?).