I found this on another blog and figured I would include it here as well...
Chiari Survey:
1. Diagnosed when? Officially in the Spring of 2012 at 22 years old!
2. Decompressed, if so when? Haven't been decompressed--cancelled surgery this past summer
3. Other additional conditions, if so which ones? EDS, Dysautonomia (Neurocardiogenic syncope), craniocervical instability, asthma, and several others
4. Have you personally met someone else with Chiari? Yes, at a doctors appointment and online through support groups and my blog.
5. Most challenging symptom(s)? Constant headaches and neck/shoulder blade pain
6. Most embarrassing Chiari moment? Professor was talking directly to me and I couldn't hear what he was saying.
7. Biggest Chiari frustration(s)? The pain and having to explain myself to people who probably don't actually want to know...
8. Number of medications in your personal medicine cabinet? Currently only inhaler for asthma. I don't take pain medications and avoid pills of any sort whenever possible.
9. Number of Doctors/Therapists stored in your phone? Chiari related 1; EDS related 4
10. Do you attend doctor appointments solo or with support? Always with support, usually my mom.
11. Biggest regret that Chiari has created? I don't know that I have any regrets because I am a stronger person because of what I have had to deal with, but the pain is a major factor.
12. Biggest lesson that Chiari has taught me? EDS and Chiari have taught me not to take anything for granted and to appreciate the small things in life. Also, it has taught me more about myself and my capabilities. I am stronger than I ever imagined I could/would be.
13. Favorite non-medicinal therapy? Massages and heating pad
14. Worst medicinal side effect? Diamox resulted in an out of body experience and pain medications often give me hallucinations (hence why I don't take them).
15. Biggest change in your life since diagnosis? I am more aware of everything. I have learned what makes my headaches worse and what I am capable of doing on a given day.
16. Worst medical test? I haven't had any medical test for Chiari that has been terrible, but generally speaking nuclear medicine with having to drink Barium is awful.
17. Hardest things to give up because of Chiari? Probably just days without headaches...I don't remember what that feels like.
18. Have you become more or less religious since diagnosis? I don't think my religious beliefs and faith have changed.
19. Where do you find enjoyment now, that you didn't before? As I mentioned before, I appreciate the small things in life and I don't take anything for granted. It is actually easier to enjoy life that way! I have also enjoyed maintaining this blog and hearing from EDS and Chiari patients across the world.
20. Favorite Chiari websites? They are listed above under the Chiari tab/section of my blog!
I have posted this video before but seeing as this post is primarily for awareness I am sharing it again!
0 comments:
Post a Comment