Thursday, November 1, 2012
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?"
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!!!"
Saturday, September 1, 2012
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...
Sunday, August 26, 2012
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.
Monday, August 13, 2012
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. :)
Thursday, August 9, 2012
(Lola-ismed summarized sarcasm version)
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
Tuesday, August 7, 2012
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.
Tuesday, July 10, 2012
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.