Sunday, September 30, 2012

20 Things

Today is the last day of September...which means it is the last day of Chiari Awareness Month. This does not mean that we stop with awareness. This just gives us more reason to keep it going!:)
My Chiari Awareness Necklace
20 Things about my Chiari

1. Diagnosed when? March/April 2003, I was 15 years old

2. Decompressed, if so when? Yes, July 15th, 2003.

3. Other additional conditions, if so which ones? Syringomyelia, Depression.

4. Have you personally met someone else with Chiari? Yes, Some awesome Chiarians and their families from the ChiariPeople of Pa support group

5. Most challenging symptom(s)? Head and neck pain...that would be the worst...but you said I would say the depth perception/balance issues along with the speech/slurred words/tripping over words. They are the most challenging as it interferes with walking and talking. Walking...I trip...fall...miss steps...walk into walls...pillars..etc you get the point. Talking....I may repeat the same word over and over again and not be able to stop myself to get the next word out. Or it will come out in a jumbled mess. That makes work challenging. I usually laugh it off...its the easiest thing to do although it is frustrating.

6. Most embarrassing Chiari moment? Oh many. The time I went to take my pants off..changing into pjs or something and I literally fell out of my pants. Note to self: Sit down when taking pants off. Walking straight into the pillar at work. Walking into the wall at work. Lets just say there are a lot.

7. Biggest Chiari frustratsions(s)? The pain. Having to explain yourself to others because they do not understand. The assumption because I look ok that I'm feeling ok/not in carry on as usual. Chiari itself. Not being able to do "normal" things.

8. Number of medications in your personal medicine cabinet? Are we talking perscriptions or overall? I've got Topamax, maxalt and the rest are OTC which don't help much.

9. Number of Doctors/Therapists stored in your phone? Chiari related....3 if you count my regular doc

10. Do you attend Dr appointments solo or with support? Used to be with someone in the beginning. Now its usually solo.

11. Biggest regret that Chiari has created? I feel like I lost my teenage/20's years of hanging out with friends and partying. That sort of thing. I don't know when I'm going to feel like absolute I don't plan much ahead. I try not to drink alcohol so I don't get head pain from that.

12. Biggest lesson that Chiari has taught? It has taught me to be strong. It has taught me that there are more important things in life. It has taught me to grow up and not take everything for granted. Although, there are days I lose sight of that, the pain just knocks a reminder back in.

13. Favorite non-medicinal therapy? Ice packs. Seriously I'd walk around with them as a Icepack helmet if it would stay cold 24/7....

14. Worst medicinal side effect? When I first started taking topamax (which is to help me with my  headaches and migraines (not the chiari headpain)) the initial sideeffects heightened my already numbness and tingling. It was terrible. I thought something was seriously wrong. I saw my NS and he had me see the Neurologist and we did tests etc and then cut the Topamax dosage in half...half in the am/half pm...after about a week it went back to my normal numb/tingling....

15. Biggest change in your life since diagnosis? I'm overly aware of everything I do and how it affects my head. Whether it be an activity, excercise, or even going to a concert (I've posted that before about my friends covering my head when assholes throw beer bottles at concerts)

16. Worst medical test? Only had MRI's, CTscan, and the Neurological exam...they weren't that bad...the MRI's could be less noisy though...

17. Hardest thing to give up because of Chiari? Rollercoasters! I had finally just started to get on them...I was addicted. Nevermore.

18. Have you become more or less religious since diagnosis? I don't think it has changed much.

19. Where do you find enjoyment now, that you didn't before? I have met a lot of new people from all over the world with this disorder through facebook, twitter, and other networks. I am also artsy so I spend time working on different things.

20. Favorite Chiari websites?
They are all actually listed on the right hand side of this page:)


  1. I lol'd at 13, thought of how great a 24/7 ice pack would be lastnight. I have chiari (obviously) diagnosed in 2012 had decompression that August, way worse off since. Looking into a new n.s. Waiting to have my 5th or 6th mri, really cannot remember how many I've had.