Hello? Anyone?

When I started my blog, I had big plans: highlight Hydrocephalus and those of us who each have surpassed insurmountable odds. It was a great plan in theory, and maybe it will happen one day, but this warrior is worn out!

I’ll spare you the details of my numerous surgeries and ridiculous amount of Dr. appointments since my last post. Trust me it’s MANY and the outcome the same- more unanswered questions and crazy Hydro. symptoms. If you’re reading this, then I’m sure you’ve found some commonality between us, but here’s my predicament: If I were to tell you how difficult things have gone, would there be dead air? My point is I have an amazing family and good friends, but lately the invites, texts and general friendship musings have almost completely vanished.  A few super close friends continue to try but I’m a consistent flake. I know people have their own lives and things, and maybe I’m jealous/bitter, but how do you forget about someone? I know my condition, as do many chronic illnesses, cause a bunch of people discomfort when interacting with me, but I’m still here!!! I’m tired of the raging battle within, but I haven’t forgotten about you so please don’t give up on me. I am still the same person as before but with more scars and a little more hardware:)

Thanks for letting me vent, virtual friend. I don’t feel alone anymore:) Be well!💙



A reminder with profanity thrown in:)

After weeks of not wanting to get out of bed because my head feels like it weighs a million pounds and my body feels like I’m stuck in quick-sand, I got out today. Thank goodness for small miracles because I’ve been battling the voices in my head that say “You should be doing more!” As a 31 year old who still lives at home with my two very amazing parents, I have felt that I’m falling behind in life. This idea gets compounded with having a chronic illness. I was pondering this very thought a few days ago when I came upon a write-up in the Huffington Post (see URL). I spare you the synopsis of the article and you can read it if you wish, but the take home message to me was:

” You can’t just conjure up motivation when you don’t have it. Sometimes you’re going through something. Sometimes life has happened. Life! Remember life? Yeah, it teaches you things and sometimes makes you go the long way around for your biggest lessons.”

That’s what made today so great. I think when I stopped putting pressure on myself and beat down the little voice inside my head telling me that what I was doing wasn’t enough, I got to enjoy what I did. I hung out with 3 very sweet ladies and 2 wonderful kids and it may have not been for hours but the time spent was genuinely freeing from the constant pain that is present in my daily existence . I know many of us tend to put pressure on ourselves to get out there and persevere, which I think is good; however, when we start beating up on yourselves to be like our well counterparts- it only hurts us more.  Today’s message: Be kind to yourself since you’re body is already fighting against you!


Article URL-  http://.huffingtonpost.com/jamie-varon/to-anyone-who-thinks-theyre-falling-behind_b_9190758.html

*Still getting used to WordPress so I’m still figuring out how to insert a link. For now copy and paste link  to your browser!*