Discouraged but not giving up

   Going to the doctors office and hearing "you need surgery because your Chiari..." has become my new norm. Chiari sucks! I am almost one year post-op from Brain Surgery and it feels like the whole year has been spent gaining back strength and trying to correct symptoms. The other night it hit me really hard that this will continue for the rest of my life. There is no cure so all the doctors appointments, physical therapies and yes even the surgeries are just to help quality of life or keep me living. Tomorrow (5/14/2015) I will be having another surgery to remove scar tissue and hopefully make breathing, talking and swallowing easier.

    Way to wait to the last minute and say anything, right?! Sorry I don't really have a good excuse, it's just hard to talk about.  Poker players become great by learning to read peoples tells. My husband and a few doctors can usually tell by looking at me how I feel but I do have a tell that gives me away instantly, it's my legs. Try and think back at the last time you saw me wear a knee length skirt or shorts. My legs are beaten and bruised from daily life with Chiari. They are polka-dots of strength that are an outward sign of how hard I fight. If you wake up in the morning and get out of bed and get dressed in whatever you want and go down stairs and enjoy your breakfast then you are LUCKY! I wake up, give myself a pep talk, stumble out of bed and usually trip on the way to the closet where I  check myself in the mirror to see what bruises need to be covered for that day. After that I'm tired so I sit down and rest because it takes a lot of physical effort and mental concentration to make it down the stairs without falling. By the time I do get downstairs the nausea has kicked in so any form of breakfast is out of the question. The problem with having a condition with no cure is that I will not get well soon, ever! I will always have Chiari and I will always have good days and bad days. For the most part I just like to blend in the best I can and the best way I found to do that is hide the struggle. So that's my secret.

    I have so many wonderful people in my life but it feels really isolating to have such a crazy medical condition. No matter how supportive and loving someone is it's still just hard to explain how I feel or what it's like. So when people ask I give the quick oh thanks, I'm fine. Well in full disclosure I finally had a full on meltdown/pity party just this week. I cried and whined and complained to Derek and he just hugged me. It felt like such a relief to just let it all out. What stands out the most about it was me saying I just want people to acknowledge how hard it is and he replied well how can they when nobody knows.

 LIGHTBULB moment!!! Duh

 

   I know I have what it takes to get through the hard days but right now it just feels like it's taking everything I've got. So before you ask or I lose courage to ask you, there is something you can do for me. Just like Derek comforted me with a simple hug to show he supported me you can too. The international Chiari institute suggest wearing purple on Fridays to show your support for Chiari Patients and research. I'm really not big on the wear this or that but I could use the support. I can't say why this particular surgery seems hard to deal with it's actually suppose to be the easiest one I've had so far but it does. It just does. So if you want to show your support wear purple this Friday, take a pic and post it with #ConquerChiari. Even if it's just a little ribbon, it would really mean a lot to me. If you happen to see me on Friday ( I have already shamelessly begged my Dr. to release me to see my sons concert and he said let's see how you do. Hey that's not a no!) I'm always open to a hug and please keep my family in your prayers.



Savanna