Greetings my fellow Spoonies and Loonies!
I hope everyone is feeling happy and loved. To my fellow Humboldtians: I hope you have someone to help cuddle the cold away on these rainy nights that just keep getting increasingly darker, earlier. Boo!
This Rhuemy I've been seeing in SF seems to know his stuff. I'm hopeful.
As for finding a local primary care doc, it's been a nightmarish joke.
Not many doctors want to deal with chronic pain patients. This is especially true now after the hydrocodone rescheduling. This is downright infuriating and a heavy nuisance to the patients who actually need, and use their meds correctly.
If you are a fellow Spoonie, chances are you are dealing with this, and know exactly what I am talking about.
Things just aren't working out as I had hoped. I've written numerous letters, begging doctors who aren't taking new patients to see me. I've called just about every doc here, only to be told either that A )their practice is full, or B) they don't deal with autoimmune disorders or chronic pain cases.
I moved back from LA hoping to get the care I needed while not going completely broke like I was.
Now I can't find a primary care doc to coordinate with my specialist. Obtaining health care shouldn't be this difficult. I find myself constantly thinking about moving to places where care is more easily accessible.
As far as my specialist and I know, Sjögren's hasn't started attacking any internal organs, aside from my lungs. No scar tissue has built up in them, which is great news. I have however developed asthma. No real biggie. A sexy little inhaler takes care of that.
Humboldt is growing cold, dark, and rainy. This can become quit depressing if one is deprived of snuggles. I will have a small reprieve next month when I visit LA around Thanksgiving. Sun! Bikes! Friends! Venice Beach! Ya, I'm looking forward to this.
Spring semester isn't that far off! Yesssss! I am happy about this. I feel well enough to pull off some classes, and going to school makes me feel better anyway. I'm at my happiest when in school, even with the stress of certain classes. Two semesters ago I had to drop out because of my health. Even though I'm still feeling shitty, I don't feel quite as shitty as when I had to drop out. Let's do this! Yeah boi!
Halloween happened. I wasn't able to harvest the umph this year to costume up. I did a little makeup, nothing special. No Dia de Los Muertos makeup this year. My skin is so damn dry from Sjögren's that I didn't feel like fucking with it by layering a shit-ton of cheap, drug store, Halloween makeup on it. Don't think for a second that I'm not hydrating enough. I'm a fucking mermaid. Good, clean water always within reach. You know how I do, reverse-osmosis, alkaline "Silk Water." Anyway, my dog's Halloween costumes are packed away, so I just dressed them in their badass, everyday shirts and hoodies.
Dia De Los Muertos
They say the veil between the dead and the living is at its thinnest starting on November first and ending on the second. My shrines had been dedicated mainly to four people, but as of this year it's now five. First off, my stunningly beautiful, selfless friend, Crystal Reohr, aka Kitty. She was an extremely loving mother of, technically two, since she was pregnant with her second child when she passed on. She was in a car wreck on a very windy road at night. Completely sober. Something happened, only she knows what. Giovanni was in a car seat in the back and survived the wreck. Crystal was/is a beautiful person inside and out. She was selfless and giving. Besides the fact that our friendship had such a profound impact on me (she helped turn me into a bad kid. Corruption! Haha. Lots of fun stories there!) she passed away on October 31st, Halloween. Just one day off from when Dia De Los Muertos begins. To me it feels like the veil is extra thin in her case. She had a beautiful wake. There was a slideshow of her with us friends, and with her family. All of our friends were there, and her family baked cake in the shape of a pink kitty cat which she would've loved!
He was sooo little! And she, so beautiful.
Crystal is pictured far right with her family. Her mom is holding Crystal's son Giovanni.
Me, Crystal, and my little sister Caitlyne. Taken during the year of my shaved head. If you look closely, it's obvious we are up to no good. She is wearing her Kitty shirt.
This turned out to be a wild night! Partyin at Cheshire's house.
Beach bonfire party at Cannibal Island. I loved when she wore her glasses.
Next is my great grandma Mildred Barnes, one of my favorite buddies ev.er. I spent a lot of time hangin out with grams as a teen, wish I still could. I used to massage her crusty old feet with lotion. It totally grossed me out, but she loved it! And that's the kind of thing you do for a great grandma. I have some awesome grandma stories. Still to this day she cracks me up when I think back on her antics. On a different note, she had this crazy, growly, yappy, biting, 4 lb mutt named Tanya. Everybody hated that dog except for Grandma. All our pictures of her are in my mom's old school photo albums. You know those ones with the adhesive pages that actually glued the picture into place? Meh. Wish I could post one.
Now on to my grandpa Eddie. He was an amazing man. Clever, a successful entrepreneur, and a true family man. Also a primal man who would crack open the bones of whatever creature he was eating at the time in order to suck the marrow out of the bones. Perhaps this contributed to my vegetarianism.... He and my grandma owned a printing press that my dad and my aunt both worked at. My little sis and I spent a lot of time there as kids. I would pretend to do important work in the darkroom, or at a desk cutting up trashed pictures with a scalpel. He also owned a seriously hoppin club in Downtown Los Angeles called Giggles. He hosted a night exclusively for people with mental disabilities, so they could dress up, socialize, and party down like the rest of us. Somehow it ended up being a story in the LA Times. My dad has a copy saved somewhere.
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Now to my homie Trevor Davenport. What a handsome, witty, sinister, sarcastic, crackup. He did not like his picture to be taken. I only have a couple tucked away somewhere from my 18th birthday party. I had many rats growing up, they rally do make excellent pets. I inherited a huge male rat, my first male rat. I named him Mister. I think Mister grew a brain tumor or something because he went crazy one day and chased me around the house until I locked myself in my room! After about 30 minutes I got up the courage to grab a laundry basket, sneak out of my bedroom, and trap Mister underneath the overturned hamper. He stayed there until my boyfriend got home from work and was able to grab him and put him back in his cage. Needless to say, I had never experienced that before, it scared me, and I was done with that rat. Trevor was happy to take him off my hands, thank God. He immediately renamed him Mister Sinister, Fitting. Trevor was stabbed to death in Old Town Eureka in Humboldt County, A jogger found him at about 5:30 in the morning. His murderer has still not been brought to justice, which is pretty unnerving. There are absolutely no leads in his case whatsoever. His killer is most likely still living here and still up to no good. That's pretty scary. His parents donated a nice memorial bench to the Sequoia Zoo. It displays a placard with his name on it, "In memory of..." I like to sit there when I visit the zoo.
Then came Maddison, or Maddy. She OD'ed just a few months ago. Fuckin drugs man. Fuck. Such a tragedy. Her family is torn up. We met through a mutual friend and started hangin out 24/7 right off the bat. And that turned into dating. Maddy was cuddly and shy. She always wore a huge coat that covered up her beautiful body. Even though I had a nice, big two bedroom house all to myself, we mainly hung out in her unfurnished apartment. She had one bean bag and we shared it, all scrunched up watching TV or foolin around, We hung out at a bar in Arcata called The Alibi a lot. I loved their brown rice tofu bowl, and she'd always get some sort of sandwich, and we'd watch whatever band was playing that night. Maddy had some darkness inside, like we all do, but she wasn't able to shut it out that well. Maddy was a beautiful and complicated woman.
Maddy and her dreads, me and my mohawk at The Alibi.
Mustache party at Eva's house. Wild night!
Trying to get her to dance was like pulling teeth. Except pulling teeth is possible.
Worn out after a night at Club Triangle.
It's comforting to have an official, widely celebrated time of year in which to honor your loved ones who have passed on.
Onto something more lively --MUSIC!
My last entry was insanely long, but, it was packed full of great music. I'm lacking adventure in the live music department over here in Humboldt. There are a couple local bands I love, I talked a bit about them in my last post. But I am suffering some serious show withdrawal. I did see Lyrics Born and Talib Kweli, courtesy of someone who's pretty dern neat in my book.
Sorry in advance for the crap iPhone 4s pics. But hey, pics or it didn't happen, right?!
As I mentioned, live music withdraw is in full affect. The available selection of non-electronic music guests/options has really dwindled. Ani D used to roll through semi-regularly. Les Claypool and his various bands have made a few appearances in the past. Snoop...uhg, Lion, Pretty Lights. Zepperella still comes through every now and then.
I'm dreaming of Angus and Julia Stone, Phantogram, Regina Spektor, Santigold, Poolside, you get the picture. I guess the only big names that roll through have a love of ganja, and that's their draw. A good show makes you feel alive! It's one of the best damn antidepressants out there. A girl can dream...
I know I keep buggin ya'll to read Malcolm Gladwell's Outliers, but you should! This magical man with a brain I'd love to straddle has just published a new book, David and Goliath. In an interview I watched, Gladwell says his newest book expands even deeper on the issues first explored in Outliers. I can't wait to get my hands on this one. I should be smart about this and just buy it. I'm giving our libraries my life savings in late fees.
I'm digging on this book right now:
Zeitoun is the true story of an Arab man and his family's struggles concerning his heritage in a post 9/11 U.S. setting. This conflict is certainly a cornerstone in this man's story, yet it's not the marrow here. His family lived in New Orleans when Hurricane Katrina hit. Despite the mandatory evacuations, he stays behind paddling around the ruins in his canoe, helping out in any way that he can. These topics combined make for a winning storyline and an easily digestible read that renders you powerless to put it down. Maybe I'm hyping it a little too much. It's great though, do it.
Of course I also had to do my once or twice a year ritualistic re-read of A Wrinkle in Time, and My Horizontal Life: A Collection of One Night Stands. "Wrinkle" still gives me chills to this day, and I've been reading it since 1996. "Horizontal" is packed full of raunchy and cringe worthy honest accounts of Chelsea Handler's casual sex fails. It's pretty damn great. Not to mention, it makes me feel a hell of alot better about parts of my own past!
I gave a few hints at the end of my last blog/novel as to what would be the centerpiece of this entry. Of course plans always go awry. Seems this post turned out to be Dia De Los Muertos heavy, a thought that hadn't crossed my brain until I began typing. Anyway, instead of shoving my never-ending and random song inserts down your throat, I decided to pick a theme this time; I landed on the Donnie Darko soundtrack. For whatever reason you can't buy it, only the score is available for purchase. Quite the shame as It's packed full of amazing 80's songs that flow together perfectly throughout the movie. CORRECTION: A somewhat reliable source (Wikipedia) tells me that the soundtrack is available for purchase --in the United Kingdom. Who knew?
How to prepare yourself for this upcoming and totally tubular 80's experience:
Laydies: Locate your Caboodle. You'll need a scrunchie if you're going for a side-ponytail look. Or, you can adhere to the "bigger is better" philosophy using copious amounts of Aquanet in the process. If you are lacking in the perm department, bust out your crimping iron to add a little flair. After picking out your most righteous outfit, secure your fanny pack into place. Like the ponytail, it's not required to wear said fanny pack a bit to one side or the other, but it is encouraged. Later you can remove that hideously heavy blush with just a dab of good 'ol Noxema.
Guys: Simply bust out that Dep hair gel and your favorite comb, hopefully one that opens like a switchblade. Get comfy and stylie in the plush, stretchy, velvety feel of your favorite Velour tracksuit. If a tracksuit just isn't your thing, stonewashed Jordache jeans will do just fine. Make sure there's a set of shoulder pads in your over-sized blazer. If you're feeling particularly fierce, rock those parachute pants! Just as with your laydie counterparts, a fanny pack really does one-up your ensemble and overall look.
Now we're ready!!! Here it is Laydies, Gents, and everyone in between: The Donnie Darko soundtrack (in order of the theatrical version and director's cut.)
It's been a long day after a severe lack of sleep last night. I'm signing off. Stay strong my fellow Spoonies and Loonies, and be well my friends. Be patient for the upswing, the good days. Surround yourself with friends, don't isolate. And listen to music! If I'm not cruisin YouTube then I'm listening to either the Santigold or Lilly Allen Pandora stations. I suggest you give both a try! What a difference it makes!
I'll leave you with a few of my favorite ocean creatures:
The Dumbo Octopus How cute is this?!
Axolotl Pure cute!The Dumbo Octopus How cute is this?!
The Blob Fish. Not so cute. I'd describe it as sad and something you might see in a weird dream.
Live by The Golden Rule folks! Peace!
** Inga-tron **
