Stanford Marathon

I leave with Mom for Stanford this Sunday, my first time on a plane so that will be a strange new experience, especially bypassing security with the SCS card. We actually have to go to five different appointments while we're there, which I want to stress to anyone going to an out of state inpatient program. Make sure to find out if it's multi-disciplinary, because if it is you will have many different trips if you don't do your homework on what appointments you need to schedule ahead of time, or are lucky like me and have a super amazing, friendly scheduler on the phone that actually reads the file. Boy was I glad to hear back from her!

"Ms., I'm the clinic appointment scheduler you just spoke with on the phone a few minutes ago from Stanford, I was looking at your file and it says your doctor prescribed a multi-disciplinary inpatient pain program?" 

Me: "yeah..." 

Her: " Well, that means you'll need to come in for a physical therapy and psychology eval. appointment as well, and a team conference eval. Since I see you are coming from out of state, I wanted to call back and ask if you'd like to schedule those now as well so that we can get all your appointments in the same day, that way you don't have to fly back out again and again.

Me: O.O "YES PLEASE!!!"

WHAT A LIFESAVER! We couldn't afford to fly out there five different times, because we'd need to go out for a clinic eval, psych eval, physical therapy eval, team conference thing, and the appointment where they take all those results and tell us whether or not I would get any benefit from the program, thus deciding whether or not I even get to do it. This way, we have the first three appointments Monday, then Tuesday we have a day off to just hang out because the team conference wasn't on the schedule that day, and Wednesday we do the conference thing and our final appointment where we figure out if I get to be a part of the inpatient program. We have to fly out Sunday though because there were no flights available Monday that would get us there in time for the first appointment. Then we head back home Wednesday night.

Best Onion Rings EVER!

So I'm still having no real help from the oral ketamine medication, still sleeping on the Naltrexone(somewhat), but that's not why I'm posting today.

I have discovered the secret to amazing onion ring happiness. I mean, wow, and even my picky step-dad liked them. I just love home made onion rings better anyway because they aren't so greasy and heavy, and onion rings are one of my favorite side snacks anyway. My step-dad was making teriyaki burgers for us all last night for dinner, so I offered to make onion rings for the side dish thing. Of course they were sliced into rings, dredged in flour, then egg whites, but I really like spices and flavorings and wanted to do something different with them. I used panko Japanese breadcrumbs, which aren't my favorite because they don't stick as well as regular tiny finely chopped breadcrumbs, but they helped keep the onions light and gave me a pretty blank flavor profile to work with. They definitely needed a LOT of salt, I put a pinch, like a real, culinary pinch, not a shy, few-crystals pinch. I also threw in garlic powder, I could have used minced garlic but I wanted the coating to stay dry and I was already hurting from cutting the onions so I didn't want to mess with another knife. What really helped it out though was probably the Italian seasoning and curry powder. I LOVE the smell of curry powder, and I didn't use a whole ton, probably just over a teaspoon, but it gave a background kick to the onion rings that was really great. As soon as I offered to make them I knew I wanted to use that curry powder, I just thought it sounded really delicious and had to incorporate it. They did need more salt sprinkled over them after they were done baking though, that panko is just so bland...

Seriously try it! I love food, it's one of the few things I can still somewhat manage to do with my RSD, but I still really want to get it under control and GET TO CULINARY SCHOOL! :P I know I'm a broken record haha but my family and friends says, the world will want me to get to culinary school too! I want to leeeearrn more... Next is perfecting a new pumpkin cookie recipe, some with chocolate chips and some with raisins. The first attempt was well received but they need more spices(of course!)

Starting Compounded Ketamine Capsules...

I was extremely nervous to start this medication, I think being reminded how much it's abused as a "party drug" really turned me off to the idea of taking it every day as a pill. I'm just not a big fan of medications, the less the better for me, and I hate the "druggy high" side effect that a lot of strong medications tend to give you so I wasn't looking forward to what I assumed this one was going to be like.

My doctor prescribed 1-3 capsules, 3 times daily, and basically left it up to me to decide how many felt right for my pain levels from day to day. Well, paranoid me and not knowing much about ketamine, I figured I'd work up on it slowly just to be cautious, that's what I've always been told to do with every other medication, so it's not like it could hurt anything. The first two days I took just one, and hadn't felt anything so I moved up to two for the next two days. I still didn't feel anything. No pain relief, nothing at all. Today I'm starting to move up to all three in one day, and if I still do fine on that for a couple days I'll start taking more at morning, afternoon and night. Hopefully it'll start working on my pain a bit, because the Naltrexone still isn't doing anything but getting me to sleep, and it's not as strong as it was that first week. I mean, that's nice, I don't start to pass out where I'm standing 20 minutes after taking it, just feeling like I could lay down and get to sleep an hour or two after, but I'm not sleeping as long anymore.

Also, my attempts to get into Scottsdale Mayo Clinic for the inpatient pain rehab program were a bust. :/ My condition sucks too much, apparently everything I've already tried and had fail makes them think they can't do anything more for me. So, Stanford is my next shot! Not my last shot, but the next one. It will be hard to be a month or more away from my family and friends for such intense physical therapy and such, but that should get me pretty far. And maybe I can try a lidocaine infusion with my doctor at USC while I'm back in California.... If I can talk myself into trying it. x_x

Naltrexone and Mint Truffles

So I spent half the week baking, which was for the birthday of a girl in a disability workshop I've been in. I made my french vanilla sponge cake cupcakes with strawberry cream filling and whipped cream frosting(which I use a lot of vanilla and sugar so it has more flavor than typical whipped cream and doesn't leave that nasty coating in your mouth) and my mint truffles, which I tried out a new decoration for. I kinda pushed myself a little too far maybe and KIIIIILLED my back by the end of the last day, putting the cupcakes all together and assembling the truffles. For anyone who is wondering what the heck truffles are, they're candies that have a ganache filling(creamy mixture of heated cream poured over chocolate to melt the chocolate, at least in it's simplest form) and some sort of coating. Mine are a mint ganache with a white chocolate shell tinted green with semi-sweet chocolate decoration. It was nice to do some baking again, and especially some pastry decorating again, but my RSD was NOT having it, I may have tried to do a little more than I was capable of. :) Oops... It does make me that much more anxious to find some sort of working treatment and get to Le Cordon Bleu though. I can't wait to get back to having a real life, school and then a career!

 
0813121021, a photo by Porcelain Babydoll on Flickr.

Naltrexone has been pretty amazing so far. I haven't noticed any weird side effects, the weird dreams have stopped and I started being able to get to sleep on it after probably the second day. I'm talking real sleep, like a full actual restful night of sleep, which I haven't had in... I don't even remember the last time! It isn't exactly pain relief but it's going a long way, and it feels damn good in the morning to not already start off exhausted. Still another week before I start the ketamine, but if it adds anything to the Naltrexone than at least I'm getting a little quality of life back. :)

When it rains?

(Lola-ismed summarized sarcasm version)

"Dear Patient,

Our medical facility felt it useful to inform you that there is information about some models of spinal cord stimulator charging systems that includes yours. So raise your red flag now, cause you're f*****.

Inside your hip is a burning fire bomb waiting to go off. Other patients have informed us that their skin is burning off when they charge their device, though some weren't sure if it was the device heating to SECOND DEGREE BURN levels or just their RSD kicking up, so they didn't discontinue charging and proceeded to get injured. We would like to inform you that your skin catching fire from the charging system is not supposed to happen, and should you feel pain during charging you should stop charging, reposition the antenna, or contact your doctors. Also do not sleep or consume alcohol while charging, should you catch fire and not notice during charging. We are going to try and improve the device's spontaneous combustion tendencies, so please look into our site for improvements. Keep this letter with your charger so that you remember every time you use it how f***** up your situation could become with the current model, should things such as medical devices causing first to second degree burns be something that just slips your mind often.

Please call us with any questions or concerns."

I'M CONCERNED ABOUT MY CHARGING DEVICE CAUSING MY BUTT TO CATCH ON FIRE.

It's been a bad day... *sigh* So, um, anyone want a spinal cord stimulator? :D

In other news, so far my Naltrexone is causing a LOT of drowsiness at night, though I'm kinda having a hard time getting to sleep, which is very strange... I still manage to eventually but I wake up all night and am having some CRAZY dreams, not nice ones either. Weeeeird. No other side effects that I can tell. Maybe it's making me moody, but I blame that on the crazy freaking day I had. :P It's ok, I bought chocolate!

Incoherent Blur...

Is it just me or does it seem like sometimes treatments tend to be a big blur of just STUFF that happens to and around you, the patient, but you're kinda just there for it? I feel very blurry about the crazy amount of stuff happening lately in regards to treatment for my RSD/CRPS(ahhh, yes, some people only know what I'm talking about if I say CRPS. It's a new day and age for my disorder v_v). I will try to get it straight however for anyone reading, if anyone is.

So the much anticipated California appointment was a bust, sort of. It was not what I was hoping it would be. The doctor I went to see does not, after all, do ketamine infusions the way that garnishes pain relief(bathing the nerves in ketamine, basically a 4-hour infusion over the course of multiple days to achieve a certain dosage level), he only does them for about an hour a day about once a week. Everything I have read says that will be a waste, and he told me himself he hasn't seen any patients get any effective relief from them anyway so I'm not going to do the ketamine infusions with that doctor. The option to find another doctor that accepts insurance and does the effective protocol is still an option should I decide to look into it again in the future so that's nice, having an extra option in my back pocket and all.

However, the doctor did suggest a treatment plan instead of the ketamine infusions. He was a great doctor, very nice and seemed to know his stuff about RSD which is something I don't tend to come across often with my doctors, with the rare exception here and there. He did a thorough initial exam to be sure it wasn't a misdiagnosis(routine, my mom was ready to be pissed if he said it wasn't RSD but I get why he has to make sure the doctors before him weren't morons that threw out restless leg syndrome for a muscle cramp, if that makes sense) and I appreciated how gentle he knew to be with my limbs and back. Though just to lessen the suspense, I do still have RSD according to the good doc. :P I am to start a couple new medications, I am going to work on getting into an inpatient pain rehabilitation program, likely at Mayo Clinic here in Arizona if they are equipped for my condition, but if not we're hoping for Stanford next. The doctor also recommended lidocaine infusions in the meantime if it takes a while to get into the program, just to get me through the pain and last until then.

So, I will be starting Naltrexone for the next two weeks (for central nervous system disorder, not heroin addiction you google junkies! :P) and will be writing about how that goes in case anyone else is considering starting it and wants a perspective from someone just starting it. Then I will start oral ketamine after that and be taking them both together from then on. I will keep writing on how it goes, wish me no unpleasant side effects.... :/ *nervous*

Appointment! :D

Mom and I are heading out to L.A., California on August 2nd for the consultation appointment, finally on the schedule with the doctor doing the ketamine treatments at USC. :) Big deal, pretty excited, pretty nervous, but it will be nice to get some answers and hopefully some solutions. It is so EXPENSIVE, too! Hopefully if the treatments work and I'm getting regular boosters however often they're needed, there will be a clinic working in Arizona by that time to cut down on travel costs. We're looking in to some hotels nearby that advertise discounts for people visiting for hospital appointments, so that will help since we'll likely just be there overnight for the consultation. We won't know anything about the treatments until after this appointment.

Thank goodness, because my stimulator won't hold a charge for more than a few days with as often as I use it on such high settings, and it takes at least four hours(haven't paid attention past that) to charge the charger, then like two hours to charge the internal battery, I feel like all I ever do is charge! AHHHHH! Then if it runs low before I get the charger charged and the battery charged I'm stuck in the full amount of RSD pain in my legs just sitting around with no way to help it which sucks. x_x I can't WAIT to try these ketamine treatments, did I mention I'm excited? :)