From 60 to 16

It has now been one week since my second lumbar puncture (spinal tap). I had waited over three years for the event, and was looking forward to the spine-poking test with hopeful anticipation. My first spinal tap on June 10, 2009, had been one of the most fantastic medical procedures I had ever experienced in my life. When I laid down upon the table and felt the needle pierce my spinal cord the relief I felt was nothing less than euphoric. In the year (or more) preceding that tap I had a pressure building in my neck, my head and my eyes that was unyielding. I felt as though I was losing my mind. I felt 24 hour pain, pressure and confusion while the world around me saw a healthy face. I knew something was wrong; I knew my body was screaming at me for attention, but no one else could hear those cries. I was alone, I was frightened and I thought I was losing my grip on the world I lived in.

60 

Thankfully, that first spinal tap found the cerebral spinal fluid (CSF) that had been squeezing me from the inside. The tap took away a bunch of the fluid (four vials!) and gave a name to the culprit inside stealing my sanity: Idiopathic Intracranial Hypertension (IIH), or Pseudotumor Cerebri (PTC - so called because the symptoms are the same as those with a brain tumor even though there is none present, psuedotumor = "fake" tumor). The diagnosis was reached because, on that spinal tap, I had an opening pressure of 60 with no sign of infection. The pressure was abnormally high for inexplicable (that's what "idiopathic" means) reasons.

That was then...

16

Last week I didn't know what to expect. After two weeks of tapering off of the Diamox (the drug I had been on to control the CSF) I did not immediately feel as though my brain had been thrust back into the crushing grasp of an overflow of cerebral spinal fluid the likes that I had become accustomed to last decade. I still felt headaches. Dizziness continued to be a major factor, but I could see the world and I could see it without the distractions of floating auras, flashing lights and dented faces (that actually happened right before my diagnosis - very freaky!). What did it mean? According to my doctors, only a good old spinal tap could tell us the answer.

For some reason I was in great spirits the day of the tap. To be honest with you, I credit you. Every single one of you who read the post leading up to the test, every single person who prayed for me, thought of me or just wished me well - something lifted me up that day. I was uncontrollably optimistic. I was told

• the test would be done without a fluoroscope (no fancy x-ray to make sure the doctor hit the right spot), 
• that I would have to be stabbed sitting up then keep the needle in while I do some wacky-balancing act in fetal position while tiling my body over to lay in that position for the procedure,
• that the only people in the world who don't have a bad experience with LP are those with high pressure, and
• that I would have to help the doctor hit the right spot by guiding her when or if she hit a sciatic nerve.

Then I was asked if I would like any drugs to keep me calm. I smiled. I laughed. I said, "No, I don't think so. What for?" Who the hell was I? I went into the room with the doctor and the attending nurse laughing and joking about my icy cold hands. We discussed how silly I was for still keeping my old license which screwed up my medical records everywhere. I politely told the doctor I felt weirdness in my right leg. I heard the panic in her voice as she moved the needle, but could not fathom what was so worrisome... just move the needle! I laid on my side, half hanging off the bed like some weird monkey feeling just fine and thought, "This is almost done," when I heard the doctor say, "Sixteen."

My heart skipped a beat. A number. Could it be my opening pressure?! A sixteen is a NORMAL opening pressure. I could feel no pain. I did everything to stave off the tears of joy. I didn't want to jump to any conclusions, but I couldn't help myself. I don't know what else we did in between - what we talked about or joked about through the rest of the procedure, not until I asked the doctor outright, when the needle was out and I was lying on my back, if my assumption was correct. It was.

I have not yet seen any of my specialists. My first appointment is this week and I'm trying to bump up my next one - with the guy who planned this whole experiment - which is currently in late September. I don't want to jump the gun here, but 16 is very good news to me. Anything under 20 is considered "normal." Normal is pretty awesome.

I know I'm not out of the woods yet. I'm still getting headaches and the dizziness is still crashing every little party I throw in my brain, but they both could be from something else. The fact is, I don't think I need the Diamox to hold back my CSF anymore. I fear typing it, but I've been toying with that very sexy "R" word again (remission!). In August 2011 I found out my Crohn's disease was in remission, why not add IIH to the list in August of 2012?! Crossing my fingers that my pseudo-medical degree, which I achieved through years of Internet study and doctor/specialists inquisitions, has taught me enough to give this hopeful claim some merit!

Since the Tap 

 
In the meantime I've been reading and writing. I've been thinking and dreaming. I've been wondering what comes next? I know it's up to me and I know not to push myself too far too fast, but part of me is holding out hopes that maybe just maybe the headaches and the dizziness is after-shock from three years of Diamox... Part of me is daring to dream that I might just get to taste life again as a healthy human being baring only two scars - the one only the highly trained eye can see when examining my left eyelid, and the other only visible to me in the form of my own vision: fractured, broken and inconsistently depth-deprived.

If it is a dream, I beg you, just let me sleep a little more...

And Finally

One last thing. To all of you who kept me in your prayers and sent me good wishes I can never ever thank you enough, but please know that my heart sings your praises with every single beat.

Write On Edge: My Distant Teachers

I am a writer. If you ask to see my credentials, I will show you all I have written. I did not say I was a published writer ...yet. To be a writer all it really takes is to set to the task of writing on a regular basis.

That is fulfilling, but, personally, I don't like to do anything half-assed and I know that I am on the steep end of the learning curve when it comes to all that is involved in the craft of writing. I did not study writing or even literature in college. I was a double major in Mathematics and Education. These studies have served me well, and, I believe they continue to serve me, but there is much I don't know about that which I spend my days doing now, and I am thirsty for knowledge.

Enter Write On Edge. This is a website often linked to from Rivera Runs Through It and discussed in passing. I was recently asked in an interview for the Carpe Diem blog what my number one favorite website was (besides my own). I nearly dismissed the question as unanswerable, until it occurred to me, I visit Write On Edge every single day. Here's just a piece of my answer:

I have gotten an incredible amount of inspiration from Write On Edge. This group has two weekly writing prompts that I try to participate in as much as possible. Those prompts, in part, are what inspired me to start Rivera Runs Through It so I would have a blog space to write creatively.

I realized that if I had a computer that could only access one website and nothing more, I would set it to http://writeonedge.com/ because I could sit by my computer with a notebook and some paper and still write, still learn and still grow as a writer only with access to their site.

It began with a quest for writing prompts and community. I sought out the two prompts a week from what was then known as The Red Dress Club, and let them unleash my creative juices. (Off My Trail  was the first post I wrote for the community, I am still so proud of it.) Then, as each prompt came with a word count, I began to learn about word efficiency. Through reading the posts created by other bloggers linking to the community, I began to see how many different angles one theme could be perceived from, which led to even more creative thinking. Finally, I started to read the posts in between the prompts that were filled with writing tips, experiences, lessons and the creation of a book club for writers.


I did not intend to write about the Write On Edge community today as I sat down before my computer. My intention was to write about and review the book I finished yesterday, The Memoir Project by Marion Roach Smith. The book taught me so much about writing, research and observing life, but I would never have read this book if not for Write On Edge. It was the selection for our current book club. We will be discussing the first three chapters tonight on Twitter at 9:30pm EST (use hashtag #writeonedge if you want to join the discussion).

The other two books we read as a group were On Writing by Stephen King and Bird by Bird by Anne Lamott. With each turning page I feel more connections being made, more dendrites growing and a new skill is blossoming at my fingertips.These are incredibly exciting reads for me. So, just as I wrote about On Writing and as I reviewed Bird by Bird, you can be certain you will be reading my reactions to The Memoir Project, but it appears that story was not for today. Today's story is about my distant teachers, the wonderful people behind the scenes at Write On Edge and the community of people who participate there as well.

Today's blog post is a long overdue Thank you to a community that probably has little to no idea what a large impact they have had on me.

Do you participate in an online community?

How have they helped you grow, learn or just share in your time with them? 

For fellow writers, where do you find your inspiration and your education?