I’ve finished week 2! There have been ups and downs, better days and worse days. One thing has been consistent, that is learning.

Things I’ve Learned:

• I am strong. Anyone who gets through 5 minutes of evaluation on the first day, is strong. To get through a program like this takes all the will you have and to finish even a day of it is amazing.
• The physical part is easy for some and the psychological part is easy for some but one of them will be harder than the other. For me the psychological aspect is harder because I have to change the way I look at pain and manage it. I’ve had to deal with it all my life and so separating it from who I am isn’t a simple process.
• This is a process.
• I’m still learning more and will continue to do so.
• They should put the marines through this program. They don’t have anything on me.

I have the after-therapy-can’t-thinks so I’ll continue this list later on!

Before:

I’m so tired I can’t describe it. Last night it was too cold for me, it woke me up around 5:00am-ish. I thought it was 3 or 4am and had to go potty. (Yes, I am 17 and still use the word, potty in everyday speech, live with it! ) Not wanting to wake my Mom and brother in their room I tried to slowly open the door. It totally and completely escaped my mind that my door creeks LOUDLY! She woke up and asked me why I was up and then I just got ready and hung around here until it was time to go. Which I found out today is 8:45am, only on the first day (with all the assessments) does it start at 8am. 9am is a much better start time for me, at 8am the caffeine hasn’t kicked in yet. (Maybe I should just get it in IV form… )

After:

Today was… challenging, to say the least. I’m so tired now its hard to remember what I did; 20 mins. on an elliptical stepper, 2100 meters of rowing, 10 mins. on the sitting elliptical, step ups, hand ups, dragging myself with my arms on a board with wheels up a steep incline… I think you get the idea. I did some bio-feedback as well (controlling your heart rate/breathing with meditation, thoughts and being calm and so on), it was boring (if you know what meditation is then you’d find that part repetitive), the program I used was dated and lame. Oh well. The worst part is one of the parts of the program wouldn’t even respond! I ate a ridiculous amount of food at lunch again; a bag of chips, rice-krispie, grilled cheese sandwich and fries. Lunchtime is basically time to stuff your face, which is what I try and do because I burnt it all off and was hungry an hour later. I’d like to go to a bookstore tomorrow and I need a few more things from Target, namely some dishes/cutlery for the room, another bathing suit, leave in conditioner etc. All this therapy grinds down on a person. I just hope I can to sleep tonight! (And stay asleep.)

I got home from my first day of therapy at The Children’s Institute. The morning consisted mostly of assessments. I had a grilled chicken sandwich, fries plus a Klondike bar for lunch, which I burned through. It was kind of disturbing. I haven’t eaten that big a meal for lunch in a long time. (I find I get a lot of stomach trouble from the RND.) Some of the therapy was gruelling, I didn’t like the 6 min. jog/run and the inchworm animal walk was hard. Really, freaking hard. I did all of it though. The inchworm is where your bending over, hands flat on the floor and your feet touching the ground behind you, with your legs almost straight. Once you get in that position you move one hand forward and the next then one foot and the other. It was hard to cover any amount of ground because it was slow going. I like that my day (8am-4pm) ends with some hydrotherapy. They have 2 pools but the larger one’s pump is broken. It was a really lovely, albeit small therapy pool, nice and warm as well. While I was in pain doing the animal walks the only other thing that was a problem is the tightness in my back and shoulders. It is annoyingly achy.

After I got back from the hospital my brother, Mom and I went to Target. I scored a Star Trek (the original) and Wolverine t-shirt. Did you know that those pretty black and speckled white composition that I lust after in Canada and can’t find anywhere are only a 1.50$ here (Pittsburgh)? I love notebooks. Anyways, I also picked up a Flip UltraHD. OK, I’ll post more tomorrow, I can’t keep my eyes open.

I will be leaving very soon to go to the Children’s Institute for my first day of therapy. Its been so nerve racking (literally – RND is a whole heap of nerve pain!) waiting the past few weeks, but now I am finally here. While I am ready for this, I’m also nervous.

I arrived in Pittsburgh this afternoon, the reason I’m here; reflex neurovascular dystrophy. I start my therapy for it tomorrow. If you’d like to know more about RND, refer to my older post! Time to go to bed, the long drive wore me out.

Lately, I’ve been a bit blue because all my spam is in Russian. At first I dismissed it, thinking, who cares what language the spam on my blog is in. Then I realized I do! I missed having something to go to for a laugh when I logged in. All the stupid keywords and the ridiculous emails. Like 1jk2hsfnk@hotmail.com. I could translate the Russian ones I suppose but I want my spam in my language. Is that too much to ask? Although today I did get one that was in English but it wasn’t a good one. Also there’s another one in English that I’ve gotten two copies of from the same source and its for Sonic the Hedgehog DVDs. Its quite amusing. I assume that’s from my talking about my lovely Henry (the hedgehog) on here.

I was diagnosed last month with a condition called RND. It has a lot of other names and many different forms. One of the other names I am familiar with is Pain Amplification Syndrome. When I’m talking to people I usually use both. Mostly because when I say Pain Amplification Syndrome, I feel like I just made up a name for my condition! PAS doesn’t sound very . . . real. I’ll be taking something of a break from blogging while I’m getting better. Although I may update here and there.

What is RND?

Pain is usually a response to tissue damage. This damage uses the pain nerve to send a signal to ones spinal cord, which in turn sends a signal to your brain which recognizes the signal of pain.

With my condition there is a short circuit in my spinal cord. The pain signal is not only sent to my brain, it’s also sent to some other nerves, the neurovascular ones to be exact. Those bad boys control blood flow but they’re a bit wimpy when it comes to these signals. They get all scared and decide to make the blood vessels to constrict. Think of it as a chain of bullying. Now, constricted blood vessels equals decreased blood flow. This means less oxygen everywhere and it leads to a build up of acids, both of these things cause more pain. At which point the whole process starts all over again.

I got the information I used to write this little blurb from this very helpful handout. It has a nice diagram too!
http://www.rsds.org/4/youth/pdf/AMP_RNDparentHandout.pdf

Thankfully, my pain killers have kicked in so I am able to type a bit but I’m still not really capable of getting a decent post out. This will have to do.

I was supposed to go back to Sick Kids emergency today but a boy died of H1N1 there recently (my parents told me about it and I didn’t ask when exactly). When they told me that my thoughts immediately turned to a friend who is sick and a day ago said that if her fever didn’t go down she would have to go to the hospital. I texted her to make sure she was OK and it turns out she knows the family of the boy who died. I’m very sorry for his family.

I’m not going to the hospital today or anytime soon for that matter, don’t need to be sick on top of all of this. I have almost no immune system as it is and it doesn’t help that I’m taking prednisone for the nasty joint inflamation that I’ve been dealing with for the past 3 and a half weeks. It hasn’t been much help but I don’t know if I can assess that properly until I’m off of it. I hate the way it makes me feel. Our dog takes it for his arthritis and now I understand why he gets so thirsty and crazy. The side effects are really poopy. I’m so glad that I only have to take it for a week! I didn’t realize it caused acne until just now, when I looked up the side effects. That sure does explain a lot. I feel like the Stay Puft Marshmallow Man, I’m so bloated. Its really bad.

I tried… I tried so hard yesterday to work on a new theme for my blog and I got absolutely no where. I can’t do anything right now and its driving me insane. There’s only so much TV one can watch before going batty. I can barely hold open books (I just want to read!), I can barely play on my PSP/DS. When I do it’s for a very limited time and only after my pain killers have kicked in. Yesterday, I forced myself to draw, and just grit my teeth through it and am paying for that today. I’m so bored! Even if I can do something physically, chances are that, because of the pain killers, I won’t be able to focus on it anyways. Also, right before all this started I was restringing Analiese and I can’t put her back together now! I just don’t have enough arm strength. I feel sorry for her, or maybe it’s just her disembodied face plate staring up at me that’s making me feel guilty.

Another thing, besides blogging that cheers me up when I’m ill and feeling down is my lovely dollies. I’ve been slowly working on my first Blythe customization. Missy (ADG Love N’ Lace) is having her face edited, matted, completely repainted and having 2 sets of her chips changed. I switched out these chips from Asisi (who got a couple of Missy’s). 1 or 2 were cracked when I was removing them but its not too noticeable. I plan on one day buying them all new chips anyway. I’m asking for a bunch of Blythe stuff for Christmas. My Mom is actually bugging me to ask for some because she’s, “sick of seeing naked dolls all over the place.” My dolls keep me happy and sane in times like this. Analiese got some clothes from Luts recently! I haven’t been up to taking photos but she finally has a wig! (I’ll admit its kind of weird seeing her with hair now. Haha) Its a cute “fun” fur one! I’m not a big fan of real fur wigs. Although they are stunning in almost all cases. I’m OK with them when the whole animal is being used (killing something for just its fur, is stupid), but I still don’t really know if I want real fur. OHOH! I forgot to mention I got Hakon a new body! Squee! Its also by Luts but I got it from the DoA for a good price, especially considering how new it was! Its coming from the UK and should be here soon-ish. I’m planning on getting some optional hands for Hakon from Luts too, and some new clothes. Analiese got a set with jeans and I touched the jeans to her resin (I’m scared of staining after the bad experiences I’ve had with Hakon’s clothes. Silly Volks! Learn how to color fast!), nothing happened. I put them on, nothing happened. I left them on for awhile… Nothing happened! It was a magical moment! :D Although her black PJ’s left little purple circles on her butt-cheeks, it was cute in a quickly-scrub-with-a-no-name-brand-magic-eraser sort of way! (Mr. Clean is owned by P&G, they are bad people.)

(I had written more but I lost it when stupid Internet Explorer froze because it doesn’t like to have 20 tabs open split between 3 windows. I re-added what I can remember.)