On December 14, 2013 I got a migraine that never went away. I have chronic migraines, cluster headaches and all the migraines in-between.
It's been one crazy year, my friends. On this anniversary, after rereading my other posts, I'm happy to see this year gone and I don't find much comfort in my future. Hence, why I stopped writing here. At some point your run out of things on the hamster wheel and some things are too personal. However, lets start with the amazing year I had that everyone saw and am so grateful to have had!
So, the Cryoablation on my occipital nerves worked! Which doesn't mean I didn't get migraines half of this year, just not from that locations and they were more "mild". Time to get out of the house and get some epic traveling done. Big points of interest were Monument Valley, Utah, Lake Powell, AZ, Las Cruces, NM, White Sands National Park, NM, Carlsbad Caverns NM, Roswell, Mojave desert, Palm Springs, Chaco Canyon Santa Fe , Taos and Albuquerque NM, Ivins UT, Four Corners, Bryce and Zion National Parks and hitting 6 states in the motor home and saw loads of friends along the way. We also went to Kauai and took my niece to Maui! That was seriously fun! Loads of smaller trips too, Eugene, Or., Santa Cruz (twice), San Francisco, and the Oregon Coast with an older niece (I have them coming out of my ears) which I was able to do on my own! Lastly, we had some visitors this year from Alaska, Hawaii, Eugene and San Fransisco. And, I've lost nearly 30 pounds! That's some year!
Here's the rub....
I was also in the hospital 6 times over the summer, six times. Four of those times were in Stanford, where I either had to fly myself down, or the usual buddy drive. Some of those were trips for another type of treatment they've been trying on me called DHE, it's a drug they infuse into your body. My second trip I was in the hospital for 4 days but there's a national shortage, so that won't happen again anytime soon.
Prior to the Cryoablation in May my migraines were the worst they've been, which is why I had the procedure. We aren't sure the Botox is working anymore or maybe they will work better together. The Cryoablation lasted about 4 months and you have to wait at least 5-6 months and the second Botox in this rotation didn't work at all. Just because I'm not having occipital nerve migraines does not mean I'm not having migraines. I don't count my pain free days anymore but my migraine app can show you I'm still having roughly the same, or a bit less at one point, just not disabling. So disabling for me, is bleeding out of my eyeballs because I can't drive, it gets in my eyes. That's where pain and I stand now.
Thankfully I feel like I was able to truly enjoy and be in the moment for all of the amazing things that happened this year, despite the pain. The truth is I'm worse, which to me has meant facing the loss of ALL my hopes and dreams for MY future. People forget I used to have a career, I'm not a wifey. I want to see the world, I doubt I'd live through a transatlantic flight or a cruise. I like to have a healthy social life, I may need to move to a bigger town for that anyway. I wanted to grow up to be the opposite of my parents, not become them, workaholic husband and dependent female I'm not saying I can't make new dreams, I'm just saying when you realize that it takes time to process and grieve and then be reborn. I'm still grieving. I don't want platitudes because no one else knows and if they do they feel the same way.
These are some things I learned this year... big learning year for me
1. No matter what, your oldest friends are still your best friends
2. Say yes
3. let go or set boundaries (both are so hard)
4. I learned what absolute pain is and it broke my heart
5. No one will ever know what you're talking about, ever, until the end of time, when you talk about your migraines, no matter how many times to explain it. Don't talk about it.
6. Don't trust anyone over 16 1/2
7. Always smile, it makes people feel better and it might make you feel better too
8. Avoid stress, don't try to manage it
9. Do things for yourself, without asking permission
10. Radical Acceptance
As a holiday bonus, I'll tell you about my second Cryoablation that I had done about a week ago. I had a different doctor who was great! He pumped up the local anesthesia and the pain I felt was "normal". So we left after 30 minutes, because you're not allowed to leave immediately because of all the meds in your system, and we go to the hotel. I'm walking on the sidewalk and I hit a crack and face planted into the cement. Boom, didn't even put my hands up because I was still drugged. So precise was this fall that I didn't have a scratch! I just went down like a hammer. Of course I had a concussion.. and I hope some of you are laughing.. if you know me you definitely are, because only I could perform such a glorious feat. So Happy Holidays, for my next trick....