Frustrated..

Yesterday and today were actually nice out. I am so ready for nice weather. It will be May tomorrow, it should nice out by now. I feel like all I blog about is Chiari. well right now that is so consuming. 99% of the time I have a headache. And I feel pressure in my head that is painful. So far there's nothing I can take to help. It's very frustrating. I have been doing a lot of reading and I have found that the more I do, the more it triggers a headache. Fabulous. I guess it's just going to take time to get used to all of this. 

Spring Break is over. Kids go back to school on Monday. YAY!! It was nice to have things relaxed, but the weather was so crappy that it was no fun. I am PRAYING that Isaiah doesn't have a hard week. 

ME

I am NOT sorry for being Me. Who is that? Exactly? I am a wife to an awesome husband, a mom to a 4 great kids. I am an almost 34 year old woman. I am a christian. I do not believe in religion, I believe in a relationship with Jesus Christ. He is my savior. Without Him, I would be lost. I live in WI, I hate it. I truly hate this state, but our family lives here, so here we are.  I am 99% sure I'm addicted to my iphone and macbook. 100% I'm addicted to Starbucks, I think my kids are the best kids on the planet. 
Those are some basics. I have Chiari Malformation. I do not yet know what that means for me. I have all the symtoms. Right now, I am broken, sad, confused. I don't know what the future holds. I know God is in control. That brings great comfort. I won't lie and say that I am dealing with anxiety and fear about all the unknowns and knowns of CM. Surgery is a probable known. I realized today that I am NOT sorry for the feelings I am feeling. I know God is in control and I also know that God gives us our feelings and ways to deal with them. So...I tend to always be sorry for how I feel, sorry for everything really. However, I am not sorry anymore. I got a life changing diagnosis 2 weeks ago. There's no way to escape that. So...I am going to keep my eyes on the Lord. However HE has given me the ok to just... be.. ME. I have never felt that. I have always done a great job of beating myself up. Well, that's over. I will feel how I will feel. I am done worrying about what others think. It's just too much work. I want my kids to love me, to think i'm awesome, not somebody i barely know. i want them to see the real me, to be proud of their mom, to know they are loved and cherished and adored. To know that even though we have had more than our share of hardship, we love the Lord, we serve God, we love our kids. They are the ones that are really watching me. They will have the memories of me that will last...I pray that God will give grace and help me to be what They need me to be. That is what I care about. So, I am getting off my soapbox now. Well almost.
I'm not a skinny minny, I'm not gorgeous, I don't have outstanding talents, I'm not hello miss sunshine. I'm just fine with that. Im actually good with that. Better than that. Because God, The king of Kings made me this way. 

Take me or Leave me.

I have decided, that I am just not the person I wish I could be. I tend to be or want to be the people pleasing person. I do not like it if someone is mad at me. I don't like it if I can't help everyone that asks. And what's worse, I can't help the issues my kids have or that I know have. I admittedly can not just "deal with" my diagnosis of chiari malformation and move on w/ my life just 10 days after the diagnosis. My head is still spinning. I still want to cry. It hits me that this is a chronic illness. I will deal w/ this for the rest of my life. I am only 33. When I am told that I need to avoid regular things, when I don't know from one day to the next how I will feel, is extremely frustrating. and honestly, I will deal with it in my own time. I do believe God will help me work thru this. But I am who I am. God made me this way and fighting it just makes everything  worse. Darnell is always telling me why do I try to be like so and so, or worry about what other people think? Well I am have gotten enough situations thrown at me that I just have to worry about what what goes on under my roof. It's so exhausting thinking and worrying about everything else.   I'm not complaining, just stating facts. And since it's my blog, I can do that. I am trying my best to juggle a lot. Darnell is a major source of my strength. 
I am facing a whole lot. a whole lot that I don't even know about yet. So forgive me if I am not myself, if I seem crabby or pessimistic, but this is a big blow for me, my family. I'm handling it the best way I know how. I have many tools, many outlets, many friends and family members that are here for me. My blog serves as my outlet to unload my what my brain is holding in all day. so that's that. take me or leave. love me or hate me. I'll I can do is do my best. My heart is always in the right spot.

Further reflection

Today was another LAZY day. I have had more lazy days in the last week than I can remember. Thanks to my amazing Husband. Everyone deals w/ stress differently. For me, I tend to shut down for a bit, then I pick myself back up again and do what I need to do again. My diagnosis of Chiari diagnosis has most definately changed me. It will change the rest of my life. Sometimes for the worse, sometimes for the better. I wonder a lot why God has chosen our family to deal w/ these different challenges. But trying to figure it out is like trying to find a needle in hay stack. If I am to know why, God will show me. Until then, I need to do what I can do. 


I am coming to terms w/ the fact that I am not, never will be and am ok with not being the "normal"  housewife and mom. I am the mom God wants me to be. If I were anyone else, I wouldn't be right for my family.
I am SOO looking forward to spring. Granted, this year I have to do some things a bit differently~ I need to be aware of my symptoms, such as the neck pain, dizziness, extreme tiredness, and of course the infamous headaches. I have read that I need to not do any heavy lifting, heavy cleaning.. stuff like that. On good days though, I hope you do normal things. I'm only weeks away from being 34 for crying out loud. 
       I know God is in control. He's got his reasons. I am done questioning him. I've learned the hard way doing that just frustrates me more. 
And I may sound like a broken record for awhile, but it is my blog, my venting space.. so I get to vent, lol. I appreciate so much of the support and prayers  we are getting. If friends and families that are prayer warriors are reading this, please please pray would you be willing to pray for a few things for us? 
We need a 2nd vehicle in worst way. 
I need to find a way to connect w/ all 4 of my kids and meet their emotional needs during all this, in a way that is good for them. 
and probably selfish request, I really would LOVE a patio set for our porch. ( that's just something fun) and last but not least, for Darnell. That God would give him what he needs to help him thru this, friends he can lean on and ways to deal with all this w/o feeling like he's stressing me out. 
thank you. I know that despite the trials, the blessing far outweigh the trials. And for that i am so blessed. 

spring time soon??

For months I thought it was me, but with all the reading all I've been doing I have found that my short term memory is affected from Chiari.  Wonderful. There are sooo many things that this affects. At least now it explains all the synptoms  I have been having for forever and couldn't explain. 


I do realize I need to get myself together. I have lived my whole life w/ this, and I have to continue to. Now that I know why I feel crapppy I will deal with it. Part of me wants to just deny it. Pretend I do not have it and that I am fine. However having headaches 90% of the time would make that near impossible. 
I am glad spring is almost here. I say almost because it snowed yesterday. It didn't stick but still. Having nice weather will definately help my mood. That will make a huge difference. I need to concentrate on the good things in my life. This diagnosis doesn't change all the wonderful things in my life. I still am unbelieveably blessed.  

Ranting and Raving.....

I joined a Chiari Malformation forum. It is very helpful to communicate w/ other people who know what I am going through.  Last night it hit me that I am only 33, I feel like I am wayyy too young to be diagnosed w/ some weirdo condition that causes so many odd synmtoms. I can't even spell, haha. I guess I'm just angry. There is just NOTHING normal about our family. yes I know what is normal, really? but come ON... 3 out of 6 of us in our family have these medical issues.  I think the word of the day is anger or maybe frustration. I know I have to accept this. But I still feel like it's not real. Until my head starts to hurt, or my feet go numb or tingly after standing for a little while, or the light outside hurts my eyes or my neck hurts like crazy...All the dumb pain I have reminds me that I do, in fact, have Chiari Malformation. A week ago, I thought all this stuff was just....normal? I don't know what I thought. But I was perfectly fine not knowing.  What is the standard time to feel like you got hit by a mack truck? How long will I feel like this? 


I'm scared of the surgeries I may face...the other conditions that go along w/ CM....and just the fact that there is something not right with my BRAIN. Is it just me or isn't that ALARMING?!?!?!?! My brain and spinal cord?  Well I'm done now. I needed to get that outta my brain damaged head, lol. 

TGIF??

This week has been a whirlwind of emotions. Obviously I am THRILLED that Haley does not need surgery.  That is a huge blessing and I am so glad my sweet girl can go on being a 12 year old girl that has spring break to look forward to and not surgery. Yesterday we got the letter telling us that Savannah got into the Real School, which is awesome. So now Haley and Savannah will be there until they graduate. I'm very happy about that!
My emotions on the other hand have been all over the place. I feel as if I just want to scream!!! This stupid Chiari malformation that I have is weird and hard to explain yet leaves me feeling like crap a lot of the time. Trying to be technical when explaining it is almost not worth the effort. In plain english, I get headaches that make you want to punch your fist thru a wall, fatique that does not go away, other nagging things like weird numbness and tingling in my hands and feet, horrible neck pain. I have been dealing w/ all this for months and have just dealt with it. If I had mentioned to anyone any one of these things I would have sounded like a nut. Now when you put them all together, it makes sense. So hooray for me, they fit. But it's SOO hard to find the right meds to help w/ the headaches and neck pain.
I'll be honest, I'm not exactly the queen of being positive. And I'll just be real, this week, I am far from positive. Just not feeling it. However today I woke up today without a headache which is great. That I am thankful for!! Darnell is awesome! He's let me rand and rave and cry and sleep when I need to. I will get back into a groove. I'm thankful for a husband for giving me the time I need to deal w/ this.