Monday, March 7, 2011

5 Ways I Have Kept My Sanity as an IH Patient

In June 2009 I was diagnosed with Idiopathic Intracranial Hypertension. While the disease is not fatal, it is life-altering and becoming a patient with a chronic condition was not something I was in any way prepared for. However, after nearly two years of my "new life" I have recognized some things that have helped me remain sane through this process.

1. Finding relief in the diagnosis.

I was diagnosed after being rushed to the emergency room for nearly losing consciousness after a shower one Sunday morning. It took four days of test after test after test and my vision diminishing every day to reach the mysterious sounding diagnosis of "Pseudotumor Cerebri," now more widely known as Intracranial Hypertension. I had no idea what the heck that was, but my doctors informed me that with my results (an opening pressure of 60 and "impressive" papilledemas) I had it for much longer than the month and a half I decided something was wrong.

As they described the symptoms and as I continued to research IIH/PTC I started to realize that I wasn't losing my mind. All of the bizarre conditions I got year after year - sinus pressure with no visible congestion, dizziness, fatigue, ear clogging with nothing there, and even my chronic sciatica pain, could all have been as a result of this pressure. I didn't have a bunch of things wrong with me: I had one silly chronic condition that affected my brain, and therefore affected my whole system. To just put a single name to it and know that I am working toward treating this one thing has been, and continues to be an enormous relief to me.

2. Finding my community. 

 Once I had a diagnosis, I felt better. I felt like I was on the road to recovery, however, as symptoms continued I kept asking myself, "Could this be because of this disease? Is this another symptom?" I would conjecture, but I would never really know and my doctors would often respond with enigmatic replies such as, "It could be..." After a couple of months, I began to feel a bit lonely.

I started scouring the Internet for any information when my eyes were finally able to handle the screen. I set up Google Alerts for "Pseudotumor cerebri" and "Intracranial Hypertension." I started to receive links to medical research and corners of the internet where someone would ask, "Have anyone ever heard of..." and I would be the first to respond. Finally, in late September 2009 I got an alert that led me to

I can not express the depths of the gratitude I have for this community. The Pseudotumor Cerebri Support Group at Daily Strength is what I credit most with maintaining my sanity throughout this entire process. For the first time I was able to share my experience with those who truly understood what I was feeling. In the beginning, I would be on that site every hour, starting discussions, contributing to discussions, or just reading through the archives. The members of the group vary from those newly diagnosed, to members who have had this disease for decades, there are also parents and spouses of patients sharing their experiences, advice and questions. Now, I am sad to say, my participation has decreased, however, I do my best to check in weekly, to attempt to pay it forward and to check in on my fellow groupies.

In the meantime, I still have those alerts up and any time I come across a new patient scouring the web posting questions about the disease or blogging about their new mysterious diagnosis, my first recommendation is to find the Daily Strength group and to connect with IHRF. (If you are a patient or someone who cares about one, and have not visited either of these sites, I highly recommend you do!)

3. Letting go...

By far the most difficult thing for me to do as a patient with IIH was to let go. I am passionate about my teaching - my career and calling since 1998. I have dreams of what my life is "supposed to be" like. I was 33 when diagnosed and hadn't even reached my first wedding anniversary. However, whether I liked it or not, one Sunday in June 2009, my body literally swayed to a stop and then I was trapped in a hospital for a week to try to figure out what went wrong.

I wish I could tell you that I got the message while waiting for a diagnosis that week. I wish I could tell you that I understood when, by the end of that summer, on August 21, 2009 I was rushed to have an emergency eye surgery to save my sight. Alas, it was not my time... I went back to school defying all that my biology told me and fought the good fight, but my students suffered for it, I suffered for it. I was beyond miserable.  By the new year, I understood what I must do to save my sanity and to have any hopes of a healthier life: I had to Let Go. I had to S-L-O-W -- D-O-W-N.

That was a terrifying epiphany, I resisted it for so long, but the moment I said, out loud, to my husband, "I think I have to take a medical leave," before he could even respond, a huge weight lifted off of me. I had to let go of who I thought I was and begin to learn about who I really am.

4. Not Letting Go...

The only way letting go could work for me was with the stark understanding that I must still find a way to let my dreams live. I understand my limitations and I know that a position in a school or a classroom is probably too far beyond my grasp right now, but that doesn't change who I am or eliminate my passion for teaching. There are other ways. There's this thing called the Internet, there is this hobby called "blogging" I picked up which has allowed me to reach new audiences and share what I learn every day. I am a work in progress, but I have not let go of the BIGGIE dreams and passions in my life:
  • I will continue to find a way to make a difference in this world.
  • I will have a family.
  • I will live a healthy life: body, mind and soul.
  • I will continue to be an optimist and appreciate all that I have.

5. Not Letting What I Can't Do Interfere With What I Can Do

Directly in line with my philosophy of not letting go, I read a great ebook at the beginning of the new year called Small Ways to Make a Big Difference. It is a quick read chock-full of inspiration, but I was stuck on one page, for a really long time. It had only one quote printed across it:
I read it and re-read it and let it really sink in. It has become a sort-of mantra for me. I don't push myself. I do what I can, when I can but I don't let what I can't do interfere with what I can. The key, for me, to keeping my sanity with this wacky condition is remembering to take the opportunities to do what I can when I can!

I am happy to say that becoming one of the new contributing authors on this blog is one of those things I can do! I look forward to being able to share my experiences, epiphanies and explorations with an even larger set of the IH community and help to raise awareness about this condition!

Wishing all my fellow IH-ers a pain free day!


    1. you are one strong cookie Mrs Rivera. A true role model and inspiration. Just keep being who you are and thats enough to make a difference

    2. Marielle! you are too sweet! Thank you so much for your support. You just keep sending me your stats questions via facebook to keep my brain all filled with math magic! :)

    3. What an inspiring post. You're right...just knowing WHAT you are facing really helps, doesn't it? I'm so glad you found this community and that you are doing so much to help others facing the same scary pain.

    4. Great post!

      I have fibromyalgia and I guess I have gone through a similar sort of process in order to come to terms with it and live well despite it.

      You sound like one tough cookie! Keep up the good work :)

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