1. The illness I live with is: Chiari Malformation Type 1, Syringomyelia and Ehlers-Danlos. There are others, but hose are the "big ones"
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: Ever since I can remember. I've always had headaches and always been so double jointed (hypermobility) that I we thought it was just "tricks" I could to. No one associated the pain or that I was "clumsy" with the other things because no one knew they should.
4. The biggest adjustment I’ve had to make is: learning to give up my independence and rely on other people
5. Most people assume: that since I'm a naturally humorous person that there is nothing wrong with me.
6. The hardest part about mornings are: everything. It's an absolute struggle to make myself crawl out of bed and get going.
7. My favorite medical TV show is: Grey's Anatomy. I never can decide if I like Meredith or Bailey best.
8. A gadget I couldn’t live without is: My phone. I should say the heating pad because it's pain related, but my phone keeps me connected to the "outside world" when I can't move.
9. The hardest part about nights are: shutting down my brain. Even when I'm so sore and tired that I can't move my brain likes to wake me up for no reason at all. it's like someone else has control of the switch. Pretty frustrating.
10. Each day I take __ pills & vitamins. (No comments, please). 14. and it appears that is going up :(
11. Regarding alternative treatments I: Have no problem them. If you've researched and found something that helps you, go for it. I think everything has a place and we're all dying anyway. :)
12. If I had to choose between an invisible illness or visible I would choose: Hard one. I'm not a vain person so having something physically wrong with me so that people would quit assuming I'm lying or faking sounds rather appealing...but since I don't get to choose I guess I'll take what I'm given. Personally I'd rather be healthy.
13. Regarding working and career: If you can do that, good for you. I'm doing the best I can to do what I'm supposed to- be a mother. Hopefully a good one.
14. People would be surprised to know: I'm a pretty open book. I don't think people are surprised by much of anything I could say...
15. The hardest thing to accept about my new reality has been: That I can't do all the things I want to do. That I tell my body to do things and it doesn't. That some days I can do things and other days I can't move at all. I hate it.
16. Something I never thought I could do with my illness that I did was: I don't tell myself I can't. That's probably my problem. I'm constantly doing too much.
17. The commercials about my illness: There are none. My illness isn't a money maker so no one cares about it.
18. Something I really miss doing since I was diagnosed is: roller coasters.
19. It was really hard to have to give up: so much of doing things on my own.
20. A new hobby I have taken up since my diagnosis is: I haven't.
21. If I could have one day of feeling normal again I would: spend it all with my family.
22. My illness has taught me: that i'm stronger (or more stubborn) than I think I am.
23. Want to know a secret? One thing people say that gets under my skin is: People saying they know how I feel. Having had a headache doesn't even being to describe how I feel. I know they think they are "bonding" but they aren't. Even my Dr doesn't understand this pain isn't even anything like a migraine. So I just smile. Because really, would it solve anything to beat anyone in the base of the skull with a baseball bat while simultaneously stabbing them in the eye with a knife and twisting all their joints apart and squeezing their chest till they an't breathe as their heart pounds out of their chest? Not really. And I don't want to anyway. No one should feel like this.
24. But I love it when people: Help without being asked. My kids are amazing at this. When Jeff isn't home and they know I'm having a bad day they really do take care of me.
25. My favorite motto, scripture, quote that gets me through tough times is: Everything will be OK in the End. If it's not OK, it's not the End. God has it all under control and He sees everything I can't. So it WILL be OK.
26. When someone is diagnosed I’d like to tell them: everyone I know was already diagnosed.
27. Something that has surprised me about living with an illness is: the number of people who just don't care. or forget, or whatever. Or they ony ask how you feel because they want to talk about you. I don't don't have time for that. So I don't deal with it. Whatever.
28. The nicest thing someone did for me when I wasn't feeling well was: Someone once drove all the way to my house house with with chocolate cupcakes once. I almost cried. ANother friends showed up with Diet Coke on an extremely bad day.
29. I’m involved with Invisible Illness Week because: It's not just me. I also have a child who is told she's not ill or that her pain is minimized but what someone else thinks they know. People should educate themselves in kindness.
30. The fact that you read this list makes me feel: hopeful that maybe you'll think before you pass judgement on someone else. 

YOU. DON'T. KNOW. ME. -- you just think you do.

Matthew 7:1-5 (the Message)
1-5 "Don't pick on people, jump on their failures, criticize their faults— unless, of course, you want the same treatment. That critical spirit has a way of boomeranging. It's easy to see a smudge on your neighbor's face and be oblivious to the ugly sneer on your own. Do you have the nerve to say, 'Let me wash your face for you,' when your own face is distorted by contempt? It's this whole traveling road-show mentality all over again, playing a holier-than-thou part instead of just living your part. Wipe that ugly sneer off your own face, and you might be fit to offer a washcloth to your neighbor."

Harsh words. And a bit hard to swallow when you know you're guilty. I've spent nearly my whole life living under the rule of not judging people because I don't have a clue what their life may be like. I make excuses for their behavior and their treatment of me and mine based on the assumption that 'something must be going on that I don't know about' and I forgive and move...and yet I don't receive this consideration from others often at all....more like, almost never. Truthfully, some days, I'm just flat out tired of apologizing for both my mistakes and theirs too. I know, that's horrible of me. It's a good thing Christ has enough Grace to cover me because I certainly need it. It's hard enough being a sinner seeking Grace in good health, trying being one in constant physical pain. :(

I'm currently struggling with what the husband refers to as 'the tone' but we'll call it my 'short answer system' or SAS. ;) I'm not entirely sure how to handle this except with more and more prayer. I'm aware that my voice can get an edge as my pain levels increase and my answers get shorter as I'm holding my breath and through the stabs of pain and trying to remain standing and doing all the things that I need to do, or I'm trying to fight back frustration at my body not doing what it's suppose to. I really do try to control my emotions. I am more than aware that I don't "look sick" and that normal people have no idea what it feels like to not have control over their own bodies. I'd love to be able to tell him I could feel my finger tips and toes right now without having to pinch them to do so and that all my joints didn't feel like someone smashed them with a bat. I'd like to tell everyone how much my heart hurt that I couldn't hold my friend's baby last night because I was terrified I would drop her because my right hand kept going numb for no reason. And many nights I don't sleep at all because I wake up every 30 minutes feeling like my legs are on fire, but there's just too much to do to stay at home in bed so off we go to take care of business. And pray I smile enough not to offend the gossip mill...
No, You don't know me at all. And thanks for not bothering to ask. I appreciate it.

keeping it real...

Wouldn't you know it, as soon as I think to myself "I can do this. I can be completely honest about this" I'm hit with another bout of depression and I don't want to be honest about this. I want my first post to be positive and up lifting. I want people to come here and think it's a blog worth reading and follow me. So, what to do...Do I really keep it real? Do I really lay it on the line and admit that today Chiari is kicking my rear and I hurt like heck and I just want to cry? I feel like nothing is ever going to be better because there is no cure and it doesn't get better?  Sure, I have days where the symptoms aren't as bad and I can smile and fake it better. I can look normal for YOU better...but I'M never better.

And before anyone decides to rip me for my unChrist-like attitude, you can leave it at the door.  I challenge anyone else to walk in my shoes an wear a Pollyanna smile 24/7.  You won't find anyone in the Bible who did so don't try and force that standard on me. I'm a follower of Christ and I'm very obviously not perfect. I've never claimed to be. I've only ever claimed to be an imperfect person seeking His grace. That grace only works IN my weakness anyway...

Anyway, if you made it this far, Thank you. Stick around. I could certainly use your support and prayers...and tomorrow will surely be a better day, right?