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

Pre-Op

Soooo yes I know, I'm the worst blogger ever! I said I would have dates a while a go and I did. I just didn't ever get around to blogging it. SORRY! I actually had my Pre-Op appointment today. It was just A LOT of paperwork and then lab work. My surgery date is June 13th. The lady that called me made sure to let me know it was Friday the 13th and then even said EEK! :{ I am not a superstitious person but I still didn't need to hear that, I mean really what did she think that would contribute to the conversation?

Oh well, that happened.
Surgery is Friday, June the 13th. From now until then I plan to have tons of fun with my family and keep trucking along with my sewing projects. It's been fun having time to just sew whatever I want.

I made these cargo Shorts for Seth from the Peek-A-Boo Pattern Castaway Cargos. I love that I finally found something to make for Seth that he thought was cool. He had really been wanting corduroy shorts for some reason.

This is The Adelaide A-Line dress from Seamingly Smitten. I love how the fabric fit over this pattern!                   

This year I made Roni's Easter dress! I used the Peppermint Swirl Dress Pattern from Candy Castle Patterns. This dress looks like a dream and it came together so easily! I'm already planning a rainbow swirl version of this for her too!







 We are going to celebrate Father's Day a week early since I will be in the Hospital for the actual day. Derek is taking leave and is happy to get to spend some time with the kids. It's been really cute listening to Derek and the kids plan all the fun stuff they are going to do, I just hope that they remember to feed me.
This should be an interesting summer!!!
-Savanna

So I had a bad day.....

    Many of you know but for those that don't I had a really rough day yesterday. It really started Sunday when I woke up with a nasty headache so I stayed home from church and rested all day. Day after day it got a little worse and finally on Wednesday I reached my breaking point. I was vomiting on and off all Wednesday and just kept telling myself if I can just make it to school pick up then I can get the kids home, take some medicine and sleep it off. So my Mommy adrenaline kicked in and I made it to school pick up. I felt horrible and I am so sorry to any of my friends that felt I was being short or rude to them. I really just was trying to forge ahead in survival mode and I did not intend to hurt any feelings. Once the kids were home and having a snack I called Derek and said "I need help now". He must have known I was serious because he didn't ask any question and said he was on his way. Next I sent a text and asked for help for someone to pick up my kids, and then I called my Primary President and asked her if she would cancel scouts for me. Beyond getting those things taken care of it just hurt to much to think. I would start to cry on and off but mostly just tried to stay quiet and calm because truthfully the crying made me hurt worse.

    My kids were picked up, I got a blessing and Derek took me straight to the ER. As soon as we got there I was vomiting again and convulsing so they saw me right away before Derek had finished checking me in. They kept asking question that I could barely understand and couldn't even think to answer so they started and IV with nausea and pain medicine to stop the convulsions. Once the nausea stopped I could finally tell them how I was feeling and what was going on. I explained I have Chiari 1 Malformation and that this was the worst headache I had ever had in my life. They did a CT scan to check for hydrocephalous and that came back clear. The ER Doctor spoke to my Neurologists and they decided if they could just break the pain cycle and stop the nausea that would provide enough relief that I could be released to go home and follow up with my Neurologist while waiting for my appointment with the Neurosurgeon which is set for May 1st. (That's a long way out I know!)
    After a couple bags of fluids to rehydrate me, 2 bags of Magnesium, some other pain med and nausea medicine I got the ok to go home and straight to bed! They did also send me home with nausea and anti inflammatory medicine.  Honestly I'm feeling better today, just really sleepy but I'm going to be ok. I will post updates to the blog so that it is easier to let everyone know what is going on in a more healthy way than having to call and talking about it over and over.  I really am very grateful for everyone's texts, calls, e-mails, concerns, offers of help, support and encouragement. Thank you all!