Something that I noticed about myself.

It really bugs me when people ask me if I have a headache. I'm not sure why, perhaps it is because I know it won't make a difference. It is not like they are going to offer to take my kids for a couple of hours, or come clean my house or make me dinner.  I am NOT saying that I need/want people to do these things. It is just that I have a headache 97% of the time, seriously. On the rare a occasion I don't have one, I have what I call a headache hangover, I feel weird because I don't have pain. Let me explain something, I am not talking headaches that go away with a couple of Tylenol, though God knows I wish they were.  It is pain that three ibuprofen plus two acetaminophen doesn't even touch. I have learned to live with it. Yes, I know most people can't understand that. The thing is when your day revolves around constant pain you adjust to it. So now it is only the really really bad ones that get me down. Those are the ones that neither prescription pain relief works, where I am sick to my stomach and dizzy. Those headaches make the simple act of bending over make my head as if it will literally pop off the top of my body. (Believe I wish that statement was being dramatic.)  I still go on with my life, I take care of the kids, the house(to the best of my ability) and do what needs to be done because like I said no one is going to jump in and do it for me. I have even gotten to the point of lying when people ask if I have a headache. Not that I lie all the time and to family I don't, but I lie all the same. I view as asking a cancer  patient if they still have cancer every freaking time you see them.  Now can you see how it would bug the shit out of someone? Yes I have Chiari and yes that gives me a "perfect" excuse to just lay down all day long, but I don't. I joke with my friends about my brain slipping, but have never used that as excuse. On the rare occasion that I cancel plans it is because the pain in my head is so intense that I literally wish I would expire on the spot. Thankfully I don't get that pain more than once a month and sometimes I can go for a few months without feeling like that.  Maybe people don't know how to open a conversation with me. *shrugging shoulders* You can ask about my kids, my latest craft I might be working on, or even the book I am reading.  My ranting  is through and I hope I did not insult anyone. I just needed to get that out.

So that being said, I made Lauren and Alex pillows using these super cute stitch and stuff pillow kits I got for around $2 on clearance a while back. Lauren of course got Dora or as she calls her "Dough Dough" hehe Alexander picked Cars. 

You should have seen the huge grin on her face when I gave her this! 

Wow

I was in intense pain yesterday. Of course it was exacerbated by the fact I had only three hours of sleep the night before. As a matter of fact the reason for such little sleep was because my head hurt too bad to sleep. Can you imagine? I was so tired, yet could not sleep because of pain and yet my Neurologist only thinks I need 10 pain pills a month to deal with the pain. What a crock. Thankfully my regular doctor will give me something even if it isn't as strong, it at least takes the edge off. I had even tried to ignore it and went out to breakfast with friends, but that didn't help. My eye felt like it was bulging out of my head, I was nauseated and the left side of my face was tingly. Nice , huh? That would just be another day in the life of yours truly. I am thankful that not all my migraines are that severe. Yesterday I was basically on my couch all day. Most of the time with a migraine, I can function. I know a lot of people just don't get it, but that is okay. Just because I am not writhing around or moaning does not mean I am not experiencing head pain. Sigh I try to not tell anyone I have a headache because I can only imagine how sick and tired my family and friends ore hearing about it. I know I am tired of it, how could they not be? When I woke up this morning, the pain was still there, but not as severe. I also try not take something if I can help it. Often just some food and coffee helps.  That worked for a bit, but then I had to unfortunately take something. You see, just the act of bending over and picking things up when I have a slight headache, intensifies the pain. Maybe people would use this as an excuse not to do something, but not me. I will not use this as a free pass out of the stuff that may cause me problems. I will just learn to adapt.  After all as the saying goes........

I am a Chiarian.

Kind of funny sounding isn't it? I feel like I should be seeking counsel from Captain Picard or Spock about my symptoms. Are Chiarians friends or enemies of the Kilngons? All kidding aside, I am trying to come to terms with my diagnosis. This last week I have just been kind of avoiding it. I have to educate myself, but I was hoping if I just ignored it that it would go away. Fat chance of that happening.  I have found support from not only family and friends, but from strangers that have the same thing. It is truly amazing who you can come in contact with through the Internet.  Everything I deal with now seems to have a different meaning or a least a new reason to why things happen. For example, if I have my head turned to one side for even a small amount of time I develop a headache and neck pain, that is the Chiari. When cleaning my bathroom I would get neck pain and a headache, even though I had a ton of ventilation. I realize now that is the Chiari.  On my quest to better insight of my diagnosis, I hope to educate others, so bear with me while I take you on this journey. ☺

So here it is..

I went into my neurologist on Friday to make sure my lesion was good and hadn't grown any family members. ;~) What I learned there really scared the shit out of me. Seriously, I saw my life pass before my eyes. I have been diagnosed with Arnold-Chiari Malformation. More information about it here.  http://www.ninds.nih.gov/disorders/chiari/chiari.htm  Thank God for my friend Amanda who had mentioned it to me a few weeks back so I had already done some research on it. I have Type 1 and was told it was mild. My doctor was kind of nonchalant as he explained it to me. He said it was mild and wanted me to see a Neurosurgeon, but did not think I needed surgery. After all, it is not minor surgery they take (and here was when he used his hand for demonstration) a small part of the back of your skull off. You can imagine right there that my mind went completely blank and void of rational thought. I was able to maintain composure even chatting with a friend who works there, until I got in my car. I think I gave Andrew who was at work a heart attack when I told him in a blubbering way that my brain was slipping into my spinal column and I might need surgery to fix it.

Now can you see why I was terrified? All I kept thinking about were my kids. I have 4 kids who depend on me, there is no way I can have surgery. I mean, what if I die? Isn't it enough they have to deal with a mom who has constant headaches and losing their Grandmother not even 2 years ago? Now they are going to lose their mom. What about Andrew? How is he going to handle it?

So I had a pity fest for a bit, then got over it. I am still scared, but I not going to let this define who I am. It is just another thing that makes me, well me. I am grateful to finally have a diagnosis. Now I have an actual legitimate reason for these damn daily headaches and migraines. After doing research, I have discovered I have a lot of the other symptoms that I had never mentioned to a doctor because I just shrugged them off as no big deal.

As for surgery, I will leave that up to the surgeon. I see him in March and hopeful he can give me some more insight. Right now I am against it, but if it means surgery or paralysis, you can bet I will pick surgery. I will keep you updated. Thank you to those who have stuck by me. :) Oh and another thing, I have decided not to tell my dad about this until I have more information on it. He does not need to add this to the list of things to worry about.