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.