Saturday, May 17, 2014

"Hello Clarice"

So, I've not posted for a few days..several days.
Actually, I have five posts I've not published yet because they a word...depressing.
This surgery took me to a really dark place.
My mood goes from elated to traumatized so quickly that I can't keep a handle on it.
I'm a month post-op and I actually feel amazing-my emotions just do NOT agree sometimes.
My pain is minimal. I still have some numb spots..and the left side of my head is so raw feeling it's hard to describe.  I feel like I've been skinned... Like anytime Anthony Hopkins might whisper in my ear "Hello Clarice".  My vision is blurry 95% of the time and I've actually totally lost vision a couple of times...not fun.  However, it's funny what becomes normal.
Today, in the car going to visit a Chiari sister that just had surgery 4 days ago (and she's doing AWESOME by the way),  Bob and I are talking about traffic and whatever, and I'm like, "Do you think it's weird that last night I couldn't see for a little while and I'm all like, 'I can't see' and you're like 'okay' and we went to bed.  Shouldn't we be concerned about things like that?"  He just kinda shrugged his shoulders and we laughed.  THIS IS NOT NORMAL BEHAVIOR!!!! 
OR like at work, talking about surgery, I made reference to how freaked out I was as a new nurse by a patient with a burr hole in their skull.  My comment was about if I had a shunt it would be like a simple burr hole like my patient had and an abdominal incision or big deal.  The nurse I was talking to just stared at me.  She was like.."Yeah, I guess its all relative, you talk about it like it's a broken leg."  Amazing what we get comfortable with.  

That being said, this recovery is so drastically different from my first surgery.  I just can't even describe how I good I feel and I have this almost surreal calm feeling. Like I'm okay and everything is going to be okay from now on. That being said, occasionally I get ahead of myself (no pun intended), and my brain reels me back in.  I guess that is the nature of the beast..but I can handle it.

DOES THIS POST MAKE ANY SENSE???  I promise, I am not currently medicated..well, not with narcotics..I do have some Flexeril on board.

I actually worked two days this week.  Two whole eight hour work days.  RN's usually work high paced, busy super nurse jobs.  I'm done with that.  I have an occupational health job, I work PRN (as needed) instead of full time and was even told to take a nap if needed.  I'm so thankful for the nurse coordinator I work for and the way they have worked with me.  Amazing. I have two more days of work planned for the upcoming week and really, I am not going to push it. I think that's enough.
In my spare time, I'm toiling away on my book, working on a new website and doing my best to stay positive.  I'm changing my eating patterns to strict Paleo, as recommended to me by Dr. Oro  and I will take Protandim for the rest of my life. Protandim is THE only thing I did differently in this recovery and I know that the way it helps my body on a cellular level is why I've done so amazingly well this time.

PERSONAL NOTE: Six months ago my husband and I got involved in the company that makes Protandim for the financial opportunity, as I knew the writing was on the wall with my health interfering with my nursing career.  I never expected this change in healing, I read all of the studies and researched, but-If you haven't noticed--I am sometimes not so optimistic..(understatement of the year), but didn't expect this whirlwind recovery.  I've not wanted to mention it because I don't want to be salesy or pushy, I think I may have mentioned this one time before in a blog post, but now I'm thinking it's selfish to not tell you about something that could help you. I'll be glad to provide more info to you if you want to review the science behind it.

Other things that are happening:  I'm walking in the Conquer Chiari Walk Across America on September 20 in Houston, TX.  I live in Dallas, but am walking with the group in Houston because a big part of my heart now resides in Houston (or nearby)--and I want to walk with my Chiari sister there. I'll post more info about that in the near future.   Also, I'm now a chapter leader here in Dallas with ASAP.. American Syringomyelia and Chiari Alliance Project,  I have been talking with the Board of Directors and will be a group leader at their national convention in Princeton, New Jersey in late July (I am so honored and excited to do this).  I'm meeting the most amazing, resilient people and am beginning to see how truly blessed I am to have  Chiari Malformation Type 1.  

As far as this Arachnoid Cyst goes...I have to start giving it more credit in my life.  This gnarly cyst has been as much of the problem as Chiari and needs more credit. More awareness in needed.  I've been asked to join the Board of Directors of The Arachnoid Cyst Foundation and  my blog is now featured on the  Foundation's website .

So, I realize this blog post has been a bit different, more informational than anything..but have no fear--I'll get back to being gritty and twisty. I'm working on a post about my first day back at work..that was interesting. 

Thank you for reading..Have a great weekend! 
Taren Thomas and I, she is four days post op! Doesn't she look great?

The classic zipper shot, huge difference in appearance from mine at 4 weeks and hers at 4 days. 

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