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? :)

Sincerely, Frightened To Death?

Ugh, my brain hurts...

I'm afraid to make a wrong move, there's SO many factors to these ketamine treatments... How many days of infusions, how high a dosage, do I want a port or an IV, if I get a port, what kind? Do you fast before the treatments? Do I stop my meds before doing them? AHHHH I thought finding a doctor was the hard part, the more I read other patients' experiences the more freaked I get! Can't they just knock me out, wake me up and have me be all better? :S

What if I do something the wrong way and it doesn't work...

Capturing Fire

I have a friend so fantastic and talented, she can capture fire in paper without it burning, and it will be the most beautiful thing you will ever see. :)

My best friend in the whole world is a fantastic artist, and she has agreed to make an art portrait for me that I've been wanting for some time. An image from my back, bare, showing my two incisions, with some sort of representation of RSD. This is commonly fire, though we'll probably get the orange awareness ribbon in there as well. I'm very excited for this as there isn't a lot of RSD-specific art out there, which was the main reason behind my wanting to get all my model and photographer contacts together from my pinup modeling days(before the RSD leaving me physically useless x_x) and collaborate an RSD awareness calendar. That's another story for another time, probably when I have the energy to get it going like I still plan to haha. This will be very personal to me with my surgery scars in there and making it beautiful, and I love my friend for taking her amazing talent and doing this for me.

It's not a time to give up(Even though your body screams it at you)

So I'm indecisive....

Ok, not really. I'm not getting the second spinal cord stimulator after all, but not because of simple inability to make up my mind. I DEFINITELY want anything to get rid of any amount of pain that I can. However it's becoming increasingly more apparent that in my case another invasive treatment, especially as invasive as another surgery, would do more harm than good. You see, my RSD is one hell of a bitch. Excuse the language but nothing less would describe this condition better at it's present state. I go in for a SCS adjustment practically every month lately and have reached over 20 milliamps on one of the settings, which anyone with a SCS knows is ridiculous. However my RSD seems to see me doing this, gives me the middle finger, and gets more aggressive in response just to make sure it's still able to break through the stimulation the majority of the time. Granted life is much better than it would be without the device, the few times that I forget to charge the darn thing on time and end up having to sit with it off while I charge is absolute misery and torture and I will never forget to charge it again(for a few weeks :/ I'm human... and medicated). Yes, this bit of coverage is certainly better than nothing and that is why I wanted to go ahead with the second device for my arms as they are doing every thing they can to catch up with my legs in the great RSD pain race. x_x

I have a lot of pain in my hip at the location of the battery incision site which is possibly RSD spreading, and I've still had really severe back pain. I've mentioned before that I had to stop physical therapy when it was making no progress after over 4 months, I was actually getting worse and have still continued to, and the reason isn't entirely known yet but it was initially believed to be muscle atrophy in my back from the surgery recoveries. It could also be contributed by the RSD but that's not for sure. All I know is that I can't get comfortable at all, laying down or reclining with pillows used to offer slight relief but it drives me pretty close to literal insanity having no escape from pain every where in my body. I feel like I just can't deal with this any longer, I have to have it gone, I don't know how to handle it.

There's something new I'm determined I have to get done though. It's pretty non-invasive, it sounds like the best option that has helped almost every RSD patient that's tried it(not all, don't jump down my throat anybody, I did my research and am aware it's not a sure thing :P) and it's probably my last option at this point... Low dose I.V. Ketamine infusions. Most people that have heard of these have probably heard of them through Dr. Schwartzman, though that's a 2 year wait and as mentioned I don't think I can handle this pain much longer especially given that there's an option still left. There's a fantastic doctor in California that I am hoping to be able to see, Joshua Prager, he's got amazing credentials, has done pretty fantastic work with this treatment and seems to actually CARE about patients that need help, based on his work and what he's said in video testimonials describing the treatment specifically in regards to RSD online. Unfortunately money becomes an issue, what else is new, but my insurance already said they will cover the majority of the procedure and if we can get a doctor who will actually accept insurance(that seems to be the biggest obstacle) we will be able to manage it. I think this is my last chance, I'm determined one way or another that I WILL get this treatment, go back to school, get a job, have a life again. If it doesn't work I have no idea where I will be or what I will do, but I know I have to try for it. Hopefully more work will be done on it over time and doctors will figure out what exactly it is about the treatment is causing the relief in pain to help more patients obtain relief, possibly all patients some day.

Round Two, RSD.

Woooo, the appointment I've been waiting for! The ball is now rolling on the surgery for my cervical spinal cord stimulator device.... I didn't know how to do any of this blog stuff during the process for the first one, but I've got a unique opportunity to document the experience again for people considering the treatment for themselves to see it start to finish before going in. Of course I mention(and will continue to mention) that everyone's experiences will vary and everyone's bodies will handle treatments and surgeries differently, but sometimes it makes you feel better to see the physical process, how big the bandages will be, how long the trial lasts, how long someone else was in the hospital for after surgery, when they can expect to have the device turned on, etc. Granted I already have an idea what to expect because I have the thoracic device so I'm slightly less nervous for this, but YIKES they're going into my neck! It's a little scary, even for someone who's been poked and dug into a million times over... As any RSD patient will say, I'm sure, it's worth it if it'll get rid of any of this awful pain.

So, I'm just waiting to get the call setting my trial date. I took my psych eval and managed to pass, I'm still sane, so there's some good news. XD I think the makers of those tests are more crazy than any patients have ever been. Am I allergic to the glass in the jar? Really?!?!

Also, they want to do another RFA(radiofrequency ablation, basically chemical nerve death) on my back. They're really surprised the last one didn't work, because the blocks indicated as a diagnostic test that they would. I'm not thrilled about another round for two reasons. They were extremely painful last time, and without my mom's help I wouldn't be able to afford yet another round of procedures. She shouldn't have to be paying for my medical procedures and appointments at this age. We're giving it one more shot but if it doesn't stick this time I need to pursue other options. I want to get rid of SOME of this pain, the RSD is bad enough, but my back on top of it is just too much to live with.

Any good news?

My ablation seems to have already worn off, or whatever ablations do when they aren't helping anymore.... Sitting through class has been a nightmare again, really painful. There's a month of classes left so I know I just have to get through it, it's not like I have a job, at home I'm in bed almost all of the time, and next term I'm not taking classes because of the cervical spinal cord stimulator surgery I need to get done. I was just really sure it would last longer, so it's pretty disheartening and I really can't afford to do another one with how quickly that much pain came back.

On top of it, my physical therapists have decided it's best for me to stop physical therapy for now and revisit treatment after the surgery. It's disappointing, but I understand it. We weren't making any progress on my back, it was an extra expense considering I have no income coming in until the end of the year MAYBE, and every appointment the exercises were aggravating my RSD. The pressure of the water alone was sometimes enough to aggravate it on days it was already bad. I'm just tired of all of this getting worse and never better.

The guy I've been seeing has been really supportive through all this, and he's decidedly optimistic that things will turn around soon. We were talking on the phone the other day and it was practically painful for me to tell him the news of my appointments and ablation wearing off and such, because I wanted so badly to have SOMETHING positive to tell him. Of course he was great about it and made me smile even though I was upset... :) But still, it's hard, because he wants me to get better, it's like the only option he'll accept, but I can't bring myself to remind him that I've had this disorder for 5 years, and it's only ever gotten much much worse. :(

Nerve Ablations and SCS Revision

I've been away and unable to really write much for quite a while. I was getting a nerve ablation, and in order to explain more of the need for that I'd kind of like to go into some stuff about my spinal cord stimulator surgeries. Especially I'd like to emphasize some stuff about the revision, for people getting this surgery or considering this option to keep in mind and prepare/look out for(for the record I still highly recommend this treatment, every option comes with risks and surgeries have more risks than non-invasive options, I was aware of the risks when I opted for this and am not regretful at all, it's ended up being totally worth everything I've gone through).

A problem I experienced after my two surgeries(the spinal cord stimulator implant surgery and the SCS revision surgery), a problem which I am pretty sure I mentioned before, is that the muscles in my back have atrophied from the lack of use. I'm not 100% sure if I've mentioned it, medication brain-fog making me fuzzy on everything I've talked about on here already, and I'm too lazy to go back and check right now. :/ You see, after the spinal cord stimulator implant surgery, they tell you to be extremely careful, no bending or twisting at the waist, no lifting over 5 pounds, you can walk but be very cautious about physical activity for 6-8 WEEKS to avoid dislodging leads until scar tissue can form and anchor them. Now, I was overly cautious because I wanted this thing to WORK. That, and I was in paaaaaain after the surgery, so there wasn't much accidental movement anyway. You aren't gonna move in excess and not notice it after this surgery, trust me, the tissues they tunnel away and separate to fit those wires in will certainly let you know if you're moving too much, and if they don't the incision sites will. So for three months I was hardly using my back and not really moving it. However, I have scoliosis to the left so mild we didn't even know about it until after the surgery, which means the midline of my spine shifts slightly to the left. My RSD pain is severely in the right leg, slightly in the left but the majority of the pain and the most severe pain is in the right leg. This ended up being a problem for me because the leads of the spinal cord stimulator shifted with my midline after the surgery, simply millimeters to the left but it was enough that it was hardly covering the intense pain on my right leg after only a couple weeks of recovery. So the doctors all decided we needed to go back in and fix it, which meant another 6-8 week recovery of no back use what-so-ever, literally right after I was able to start moving normally after the last recovery period. Knowing the problem with my spine this time around my surgeon put the leads almost entirely to the right side and it worked perfectly, however my chiropractor determined that the muscles in my back atrophied from such a long recovery time without being able to be used. It's caused problems when I sit or stand too long because my spine has a hard time supporting my body weight up without the help of those muscles, it's really painful and makes classes even harder than they were with just the RSD. Even sitting through dinner with my family was nearly impossible, my mom would catch me trying to hold back tears when I'd have really rough nights. I've been doing a LOT of physical therapy, but no progress has been seen in the couple of months I've been doing it yet.

So my pain doctor suggested we try a facet joint nerve ablation to help with some of that pain. This is an interesting process, my step-dad had one done before actually but he didn't really remember what it was like so he was no help in mentally preparing me. :P I had to go in for two sets of facet joint nerve blocks before the ablations were even scheduled because the block is like a trial run, if you get even an hour of relief from the block it's an indication the ablation will be successful and they go ahead with it. Since the ablation is essentially them chemically burning your nerves it makes sense they want to make sure it's going to offer some relief before jumping in with it, or even making sure they've got the right nerves before burning them. Kinda like the spinal cord stimulator trial. Anyway, I've been really stressed for money lately because I have no income and endless medical expenses, and getting these procedures without sedation is half the copay cost. My pain doctor told me EVERYONE gets the facet joint block without sedation, and hardly ANYONE feels ANY pain, it's NO big deal. Hahaha, it's such a simple procedure, like a tickle really...(she didn't really say that part, just my sarcastic help) Do NOT get this procedure without sedation if you don't normally go without sedation for your procedures. Whatever you do, DO NOT SKIP THE SEDATION. They injected the local anesthetic, which hurt because even just the skin and muscles over the spine there were so messed up, and my doctor that performs all my procedures put the needles in that the medicine goes in. And I Screamed. Oops.... He decided to administer another round of local anesthetic, waited a minute to let it take affect, then warned me he was administering the medicine to the nerves and it was probably going to burn a little. Big understatement, my mom heard my reaction from the "little burning" from the waiting room.... I apologized for screaming, I think that's probably bad patient etiquette or something, but I did feel better and less like a wimp when he sounded really sympathetic and said "Don't apologize, your nerves are really badly damaged" I was exhausted from all the freaking OW and after the 5 minutes in the post-op area(I even skipped my apple juice!) got in the car with mom, and promptly slept the rest of the day. I decided I would tell them before my next block that decided to opt for sedation, though apparently someone made that decision for me because when they called to see how I was doing after the procedure, the guy on the phone said this "And I see here on your chart you have another block next week? It says you're getting sedation, is that correct?" I thought it was pretty hilarious someone there recognized my mistake.

Now, finally, onto the ablation. This they definitely don't recommend without sedation, and I understand why after getting it. Even with sedation this one hurts. It hurts during, it hurts after, it hurts all the way home and makes sure you remember it a while. And not just achy pain, oh no. When they say they're going to burn the nerves, it sure as hell feels like they just burned the nerves. I mean, not the same firey pain as RSD but it's definitely a burning pain all it's own. Holy crap, I was tearing up like a baby all the way home after both ablations, I don't even know why. It just huuuuuuurt and you can't get comfortable. I think with the second one it sucked more because the needle injections were right by my hip incision from the surgery, which is still a little tender with that big battery inside there so laying down even a week later it's kinda tender on that left side. I will say it was worth it though... because yesterday, in class, I sat through both my morning and my night class without having that severe my-spine-feels-like-it's-snapping-in-two pain. :) Still had pain, but not nearly the same thing, and I made it through both classes entirely which I haven't done in weeks. I even managed to concentrate fairly well through the whole thing, which I usually struggle with because my brain is focused on the pain too much to even hear what they're saying.

Basically, yesterday was good. Yay for ablations and small wins.

Ahhhhh....

There's nothing better than those little comforts that just make you relax and feel at ease when everything else feels like utter chaos...

I've been hurting a LOT lately. After my two surgeries(the spinal cord stimulation implant and the revision), I had some really bad weakness and sharp pain throughout my entire back whenever I sit down or stand or walk for more than a short period of time. My chiropractor said it was most likely atrophy of the muscles, which makes the most sense because for 6 months I was healing from one surgery and straight to another and wasn't allowed to bend or twist my back at the waist at all, I couldn't even lift over 5lbs. Imagine that for a minute, and how stiff your back would get at the inactivity after a day, a week. 6 months?!?! I'm also no stranger to atrophied muscles, I had a round with it back when I was 16 in a wheelchair from the RSD at the beginning of it all. My right leg had swelled to twice the size of my other leg and was completely purplish and mottled red. The skin was also cold to the touch, which I was told are classic signs of RSD. I physically couldn't place my foot on the ground because just touching it to the floor made my nerves scream in pain. That was for almost 2 years, and my right leg was so thin after it all from the inactivity, you could feel with your bare hands how completely underdeveloped those muscles were compared to the left leg, which was fine at the time. Now my back is going through it, and it's just so painful... My mom is truly amazing, she's helped me get a new mattress(mine is awful and old with two human-sized craters by having to put up with the RSD patient that spends 80% of life in bed :P) which will be here on Tuesday, and it adjusts which we think will be REALLY good for not only my back, but my RSD as well. SO EXCITED! My arms have been hurting a lot lately too, but I'm seeing my pain doctor soon to see what other options there are until I can afford the next surgery.

I was just sitting here in bed, and turned the stimulation on my device up, and really just had to exhale. It felt soooo much better and I felt like I could relax having a bit of that pain go away again. There really is nothing like it. The closest thing I can think of to compare is like a big glass of water when you're dehydrated, that calm your body feels all over at getting one thing it really needed in that moment. I know, I'm weird, but little victories are all I can ask for right now. :) In this moment I feel relaxed, even though I have a million other things to stress about tomorrow, and that's enough for me right here.

Oranges in a Flower

I'm a little late posting this on my own blog.... *shame* BUT I did get it posted to the Iron Craft page in time. :) I blame more physical therapy abuse on my procrastination.

I finished challenge #2! Yay, cheering *ahhhhhh*. I went ahead with a truffle, as I've really enjoyed candy making lately. For the challenge itself I went with a very fresh orange ganache filling that used orange zest and fresh orange juice, and the result was a REALLY vibrant orange taste. It was not like the Walgreen's orange chocolate I'd had in the past because it was a creamy ganache in a chocolate shell and the flavor of the orange was just so fresh. Being that my family is not big fans of orange chocolate, I tested them out on my friend Magpie and will test them out again on my other friend Christine as soon as I get the chance to get them to her. :) Magpie seemed to enjoy them, so I'm glad I'm not the only one immediately around that liked them. Anyway, back to the challenge.... the theme was hearts and flowers for the upcoming holiday, Valentine's Day, so I went with a rose mold and hand-piped hearts in white chocolate for decoration, which is something I first tried doing for my mom's birthday in December last year. They turned out pretty cute and dainty!

Have a quick look at the other Iron Craft crafter's projects, as well.

 I also made some honey ganache truffles with the square mold and a peanut butter banana chocolate in the reese's shaped mold. The honey truffle is interesting... it's got the sweet honey taste but also the dark chocolate undertones. It's not very sweet but it's not very bitter like dark chocolate can be either. It also isn't like semi-sweet, which is typically what you'd think of as that in-between balance. It's kinda slightly sweet and robust at the same time haha. Very tasty though, as strange as that little thing is. The PBB chocolate is just amazing. It has a thicker consistency as it's mashed banana and peanut butter mixed together(not a ganache, and therefore not a truffle). I came up with this because my mom was talking about her favorite ice cream flavor, peanut butter and chocolate ice cream with banana ice cream, and since I don't have my ice cream maker for my AMAZING kitchenaid mixer yet... next best thing. :D

  

Challenges

So last time I was talking about the Iron Craft challenge I decided to take on, however as I entered that first challenge late I only had a few days to complete it as opposed to the two weeks that are allotted for each challenge, I didn't get as much done as I had hoped to... My intention was to take on something I've never done or even heard of before, quilling, a neat form of paper art that take thin strips of paper and rolls them into spiraled shapes. Mine was to be a 3-D sculptural scene of water, lilypads and an orange lotus flower, as the lotus flower in Japanese culture symbolizes perseverance in difficult times and overcoming harsh conditions, and orange is the color of the RSD awareness ribbon. I was going to give the finished project away for the Balloon release/orange flower giveaway awareness day in April(Here's a link to the Facebook event page if anyone is interested. Join the group or keep an eye on the Hope Over Pain folks, this is likely to happen again next year if you miss it this year! http://www.facebook.com/events/129168153868432/). I plan to still finish this project on my own, and will of course post pictures as it's finished. <3 However, the IC Challenge continues, so that takes precedence for now.

Challenge #2 is Hearts and Flowers. Hmmm.... Not sure what I'm going to do on that one yet... I know I have my truffle recipes(yes, I bake a LOT when I'm feeling up to it or when my family can help with the heavy lifting, that will be apparent in time ^-^) which include some flowery flavors, like my lavender and rose water ones. I have rose shaped candy molds as well, but I'm not sure what to do about the hearts... I would certainly like to do some kind of chocolate truffle for this, I'll just have to give it some more thought to give it that artistic element. Maybe some piping bags are in order... :)

http://www.justcraftyenough.com/2012/01/iron-craft-challenge-2-hearts-and-flowers/

Another thought on challenges, if anyone has a spinal cord stimulator device do NOT forget to charge that sucker... I've been rather fog-headed lately and hadn't checked how much charge is in my internal battery(I'll have to go into more detail on what that is sometime, in case anyone reads this and isn't aware what that treatment option is about), then Sunday night I felt the stimulation randomly shut off, which it does when the battery is near dead as a safety measure or to preserve energy so it won't get damaged or something. I had to charge the charger itself first, and at this point it was already really late and I had physical therapy the next morning. When I was finally able to start charging the internal battery I was starting to feel the hurt coming through the residual stimulation pretty bad and was sooo tired, I fell asleep during it... oops. :/ I ended up sliding off the paddle that charges the internal battery, the charger ran out of energy and I woke up needing to plug it back in and leave for PT before it was done. I was HURTING, I didn't realize how angry and alive the RSD had become while I'd been having this wonderful stimulation covering it up. PT ended early when I was trying not to cry and holding back screams at each exercise they had me try... Good news is I'm all charged up and even got an adjustment from my amazing St. Jude's Medical guy so that level of pain is covered up for the most part again. :) Still pretty sore, but you can't really compare the two. Classes have also started and with the disability assistance from the school I'm shooting for all A's this semester. Fingerprinting, Victimology and General Biology I, should be good.

New Here....

Ok, a blog.... I finally went ahead with it, after multiple friends telling me I should make one, have an avenue to tell my "story" as someone who got RSD so young. Here's the thing, my thoughts tend to be a little un-focused from the condition and because my arms are affected I can't type a lot all at once, so baby steps are in order... Likely a lot of posts that start at one point in the day and end much later due to multiple breaks. :) But I'm inspired, dang-it! And rather stubborn... Let's call it inspired!

I have no idea what I'm doing....

So, the reason I finally got around to this was a very interesting challenge I saw online. The Iron Crafts Challenge. This looked like a great distraction, especially since I've got many weeks ahead of physical tortu- um, therapy. I'm giving it a shot, I've always liked crafts, and this is some great inspiration to actually get something done. I'm thinking of focusing my projects on an RSD theme since there are quite a few awareness events coming up.