Tuesday, June 7, 2011

My Diagnose-ary

Do you have a "diagnose-ary" - a date that comes around each year and reminds you when you were first told what "IT" was? I do. It is June 10th, but the entire saga began on June 7, 2009, which is why I am thinking of my diagnose-ary today.

In 2009, June 7th was a Sunday. I woke up early to get ready for the two test prep courses I would be teaching. It had been a long night, I still wasn't sleeping for more than 20 minutes at a time, and my oldest dog, Chewy, seemed to have a resurgence of the infection we had been working on with the vet for the last two and half weeks - she was pacing and panting all night. Neither one of us could comfort each other, and neither one of us was ready for a new day.

As soon as I got into the shower I felt and saw the world darken around me, I stepped out and called my husband as I slowly felt my legs give way. My husband was there before I hit the floor. He followed me back to the bedroom where I walked right into a wall and then laid down (I know this part because he told me, I have never had any recollection of it).

"We are going to the emergency room," he said.

"But Chewy needs to go the vet," I said, knowing that my trip to the hospital would not be a short one and that she needed help fast.

My husband saw what I didn't - I needed help fast, too, "You first."


I didn't come back that night. In fact, I didn't come back home until the afternoon of June 12th. I had returned with a treatment, a diagnosis,  and when I came home there were only two dogs to greet me, instead of three, in so many ways, life had been changed.


So, you may be asking yourself, why reflect on such a sad time? Why relive it every year? These are good questions, and I have some answers:


  1. I want to learn from it. I don't want to make the same mistakes again. My diagnose-ary should have been in August or September of the year before. In fact, some of my doctors believe it should have been as early as 2007 or 2006! I allowed myself to get to a point where my body completely had to give up on me to notice! I also was losing my vision day by day, but I told myself I didn't have the time to get to a doctor because of work, because my dog was sick, and because I had to cook dinner! The same vigilance that I attacked Chewy's sickness with, I should have attacked my own.
  2. It is not all sad news. My spinal tap was one of the most euphoric things I have ever had done in my life. In minutes this doctor literally sucked away years of pain from my head, my back, and my body. I couldn't be more grateful. Also, just having a name for what was going on with me was a god-send in itself, before that I literally thought I was losing my mind. Finally, my vision, even though it is still limited, was saved. There was a time where I had to hold my husband's hand to walk around because I couldn't clearly see the floor beneath my feet - I can now walk on my own and conduct myself in a way that many can forget about my issue when they are around me.
Today marks two years since the world went dark around me. A morning when I truly thought my body might be throwing in the towel for good, and I had nothing left to give it... but like the phoenix who can only be born anew once burnt to ashes, I seemed to need that crash and burn to truly grow some new feathers. It took three days for the hospital to figure out what was going on with me.  They put me through nearly every test they had available in the premises, but you readers of this blog know who found out what was going on: it was the doctor in the Eye Clinic.

I was finally allowed to go there on Tuesday, once it was cleared that I would not pass out, have a seizure or go into cardiac arrest (all things that were suspected when I was admitted). When the doctor looked into my eyes, his reaction was immediate and severe. He called in a number of other doctors to look into my eyes. They all mumbled excitedly before me. They noticed me when I almost passed out - I thought I was going to lose my vision. On the doctor's recommendation, I had a lumbar puncture (aka - my momentary glimpse of what heaven feels like) on June 10, 2009. That LP, with an opening pressure of 570mm H2O, confirmed all that the doctors mumbled about: I, the girl in pain, the girl with funny vision, the girl with dangerously low blood pressure, with a history of sciatica pain and Crohn's disease, had the rare disease known as Pseudotumor Cerebri.

There was a name for this. There were treatment options. We were going to fix this!


Happy diagnose-ary to me!


Any suggestions on how one should celebrate their diagnose-ary? 
This is the one piece I have not yet figured out (although I think this year might have something to do with me seeing Super 8 in theaters!!)

Monday, June 6, 2011

She's Not Faking It and It's Not Just a Headache!

I'll jump in feet first today.  It's not just a headache!  This will probably hit a nerve with many of you.  I am going on strike and never calling IH pain a headache again!  From now on, it will be called "pain."  I'll only answer questions about my daughter's well being as to whether or not she is in pain today.  The word "headache" is banished.

So what brought this about?  Yet another round of commiseration with her pain.  When asked how she was doing lately, I mentioned that she had a few rough weeks recently.  I was then advised that not enough sleep can cause headaches; not drinking enough can cause headaches; stress can cause headaches; allergies cause headaches; too much homework can cause headaches; yadaydayada... Of course all those things can cause a headache -- just a single headache.  Not 3 weeks of misery!

You would think that setting myself up for frustrating situations would have stopped years ago, but I guess I'm a slow learner.  Therefore, I'll save you other parents some time.  Don't refer to your child's IH problems as a headache.  There is a difference between a headache and IH pain.  Technically, IH pain is categorized as a secondary headache due to head trauma from increased intracranial pressure.  In that sense, it seems too lighthearted to lump that kind of headache in with the headache I got when my teenage son came home too late last night.

Try it.  You'll see a different response from people when you talk about the pain rather than calling it a bad headache.  So my advice is to banish the word "headache".  Unless you have a rowdy, healthy teenager waking up the house at night.  Now that's a headache!

Sunday, June 5, 2011

First Week of June.....

My IH was acting up pretty bad in May, but seems to be a bit better with a doubled dose of diamox. I still haven't heard back from my neuro, so I am giving up on her. She is moving to Washington state anyway, so I need a new neuro regardless. I tried getting in with a Neurosurgeon that a facebook IH friend sees at my hospital, but he is out of the country for over a month and I know that I can't wait that long. I called my PCP and got a recommendation from her office for a neuro, so I am trying to get in with them. I'm having foot surgery in a few days, so I don't think I'll wanna even pick up the phone. I haven't been feeling well with the heat the last few days....so I don't wanna mess with it.

Not a whole lot new. Atleast this time I haven't been to the ER twice for treatment! I've been able to manage the headaches better between the fioricet and the vicodin and they are not as bad now that they doubled the diamox.

I'm wishing all of my IH friends a pain-free week and please enjoy the sun and pool for me over the next month since I won't be able to swim from the surgery! :)