208 days

Today is the 6 year anniversary of the burn injury of a person for whom I have so so so much respect. She is so confident, beautiful, smart, and caring - I hope so much that when I reach the 6 year anniversary of my burn injury, I will feel the same way about myself.

In the meantime, here's a quick update on my progress:

Since moving to State College, PA to begin grad school I have been going to the Integrative Bodywork School of Massage Therapy 3 times a week to have my scar tissue worked on. They are so incredibly great - I can't imagine being here without them. I don't have a lot of scar tissue, but what I do have is either thick or has the potential to limit my mobility later in life (or both).  Basically what they do is grab some tissue, pinch it as hard as they can, and when it's good and pink (means the blood is flowing) they twist. Ouch. I do it every night (even when I go to IBSMT), and sometimes we are rewarded with this odd sort of popping sensation under the skin where the scar tissue's binding to other tissue or muscle is being ripped.
I'm not going to lie, it grossed me out a little bit at first, but it's just like any other gross thing - if there's a positive connotation, you grow to like it. (For example, I really enjoy the smell of sulfur because it reminds me of Yellowstone.)
The other reward is that slowly but surely (and surely faster than before) I can see scar tissue flattening out in some places, and becoming less discolored, and areas on the rest of my burn where my natural color is coming in.
Between that, my TA responsibilities, my classes, and the tiny bit of research I'm trying to fit in this semester, I have just enough time to eat and sleep. And go to Wegmans, the BEST GROCERY STORE IN THE WORLD.

Also, I need to give a serious shout-out to my mom, who was doing these massages before I came to PA. Although we weren't doing exactly the same thing that IBSMT does, they raved about how good my burns look and complete 100% credit goes to my incredible mother and her patience and willingness to break her thumbs on my scar tissue for 2 hours (and sometimes more) every day. I think every day about how lucky I am to have my mom, and my whole family.

:)

Day 181

Wow, I didn't realize it had been so long since I'd written anything. I started feeling like I was writing to the void, and you know what they say - if you look into the void, the void looks into you (actually I think that's Nietzsche). It was getting awkward.

What's also awkward is writing about things that make me sad, or things that are hard - those are the days that I write blog entries in my head, but those are also the days that I don't want to post, because I just want everyone to think I'm doing great. And I am! Just not every moment of every day. I still have trouble explaining to people what happened, and I still seem to get pretty wiped out sooner than I would expect to, but then again, maybe I'm just getting older (hehe). The biggest thing I find I have trouble conveying or explaining or even dealing with is how I've changed. I find that I'm emotionally a lot more vulnerable than I used to be, which I suppose is not unexpected. What is unexpected (to me) is in the ways that I'm more vulnerable. When people are stressed out around me, I can't cope with it; I just have to leave the room or risk having an anxiety attack. In my mind, I used to be a source of calm, so this is hard to deal with. I guess I just feel like I used to have these sort of emotional filters that aren't there anymore. It's hard to explain. 

Last Friday I was at the Wound Center for a check-up. Mondays and Fridays are for burn patients, and I usually feel so comfortable there - mostly because the nurses there know me well and my doctors are there and everyone cares and tells me that I look great and that I'm progressing SO well, but also at least a little because on those Mondays and Fridays, the waiting room is full of people who have some idea of what everyone else is going through. This last Friday though, I was sitting in the waiting room playing Quordy (boggle for the iphone), when these two women sitting across from me start going into great detail about their injuries, including blow-by-blow accounts of the incidents themselves. I haven't had a panic attack in a while, but that set one off and I had to get outside.

The other hard thing is that I'm still dealing with it, I'm still coping. Granted, I'm doing these things a lot better than I was - I actually can talk about my accident with people other than my immediate family and my therapist now, but I sometimes feel like people look at me and think 'Oh, that happened six months ago? You're fine!' And yes, as I keep saying, I am, but that doesn't mean I'm not sensitive. It doesn't mean that I'm fully healed and can run around and do whatever crazy thing occurs to me next. What it does mean is that I'm still recovering, and I'm still recovering well. So, yay!

Day 71 - 2 months, 8 days

(Added Dec 28: Just found this post as I was writing an update - I can see that I never finished it and therefore never posted it, but I'm going to post it since it was such a momentous occasion! And I promise I'll finish my thoughts in the next post.)


Okay, big news first:  NO MORE BANDAGES!!! All of my open wounds are now officially CLOSED. WOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!! My skin is all still pretty fragile though, so I rarely get to walk around and feel the wind in my leg hair. (Have I written about that before? It's really an incredible thing.) Speaking of leg hair, I think that I've got it growing in all of my burned areas (on my legs. My arms have ARM hair, woah.), which is really good - pigment is tied into hair growth, so the more hair I've got, the better my chances are for getting as much pigment back as possible.

Other, more general news: I've been discharged by the visiting nurse association, which is sad because it means I don't get to hang out with Inna anymore. She's Russian and pretty much the greatest. I have physical therapy (hereby referred to as PT) twice a week at Cornerstone in Woodbury. It was both shocking and unsurprising to see how much stamina I'd lost - I knew I'd lost a lot, considering how little it took to exhaust me over the course of a normal day, but that first visit I was wiped out after 10 minutes on a stationary bike and 5 minutes on an arm bike. Now I'm up to 10 minutes each on the bike, an elliptical, and the arm bike, and rather than being wiped out, I feel pretty good! Tired, but good. The other day some of my excellent cousins and friends were over, and I managed to participate in a game of kickball! That was when I discovered that running after not running for 2 months is exhausting. I had to take a nap after, but being able to actually participate in a physical outdoor activity was just incredible.

A more difficult thing that I've been dealing with is my own self-image. You know how when you're daydreaming or just dreaming or if you close your eyes and picture yourself, you have an idea of what you look like? Well, it turns out that if your physical appearance changes rather drastically, there's a lag time before your mental image catches up. It's been getting better, but at least once a day I look down at myself and am surprised by what I see. It feels like having the hiccups, or hearing something that sounds like your alarm clock in the middle of the day. Oh yeah, I'm awake. It's hard to look at pictures of myself from before, because I know that I don't look like that anymore. I don't know if I'll ever be the 'wear shorts as early in the season and for as long as possible' person anymore, and part of me feels like that girl with the toothy grin and the long legs is gone. This is hard to write about.

Day 44 - Zing?

A recent conversation with my landlady (anyone looking for an apartment in State College, PA?):

(I'm talking to her about giving up my lease, since I'm deferring a semester, and she knows the general situation as I got burned while starting a fire with gasoline)

Her: So how are you doing dear?
Me: Oh, much better, thanks! Just one spot on my right thigh that's still healing.
Her: Well, I guess you've learned your lesson, haven't you.
Me: *blink* Uh, heh, yeah, I guess I have.
Her: I bet your mother must say that to you every day!
Me: Well, no. She doesn't. She's very sensitive to my feelings on the subject.
Her: *awkward moment of realization* Oh! I'm sorry!
Me: It's okay, more people say that than you would think... etc etc

And it's true. There haven't been many, but there have been a handful of people who have looked at me - looked down at me from their high horses - and proclaimed from on high "WELL I GUESS YOU'VE LEARNED YOUR LESSON!" I don't even know what to say to that. Well, except what I have been saying, which is 'Heh, yeah, I'll say!' (smile, nod, walk away) Anyway. I just find it annoying (infuriating) and wish people wouldn't toss out that phrase quite so lightly. Or even at all.

I totally won in that conversation though. Zing.


Today has had its ups and downs! Mostly ups though :). We went to see Greg at the bike shop (Class Cycles, Southbury, CT - best bike people around!!) to look for a pair of bike shorts. I've graduated to compression on my legs, and my Widows leggings aren't going to cut it! Roy, the owner, mentioned that athletes nowadays are using actual compression tights after races and stuff, which I find fascinating. I would imagine it would shorten recovery time (after a race) drastically! We ended up with a full length pair of thermal tights, but we might order the others later.

The down was that when I got home, I decided I would clean up the pile of wood that I tried to burn. Most of the pieces were light and easily moved, but one was big and unwieldy, and I ended up banging my leg on it. YEOWCH.  But, all the wood is moved and it looks nicer now.

I think that's about it - OH. Dan came over tonight and we had a pretty good game of battleship. Unmedicated, I trounced him. ;) And I even knew whose turn it was most of the time.

Day 41 - Wound Center Appointment

Today I had a check-up at the Wound Center. One of the things I've been thinking about is how this experience has made it so much easier to just absolutely and completely love people I've hardly met. This is one of the few times in my life (at least in recent years) that I've had to completely rely on other people. Their receptiveness to me, pride in my small accomplishments, encouragement through everything... I could go on and on (and I have). So many small things that make such an enormous difference.

Anyway, my appointment went pretty well.  My right thigh wound, which was the deepest of all my wounds, had 'hyper-granulated', meaning that, well, it basically pulled a teacher's pet and outdid itself. The center of the wound was deep, and so the skin had to grow up from underneath before it could heal over. Unfortunately, it got going too quickly and made a sort of mini-mountain in the middle - an area of raised open wound. 'Skin can't go up mountains' is pretty much what they told me, and the skin that had grown (it's hyper-granulated, remember?) wasn't particularly good quality. So, they burned it back off. Ouch. First they numbed up the area, then they brought out these tiny sticks of silver nitrate (remember my friend from before?). They actually looked just like matches, with concentrated AgNO3 on the tips. So I got a nice, under control chemical burn. Then they bandaged me up, and asked if I'd like to push my appointment out to 3 weeks this time. NO! said I. So 2 weeks it is.

After I went to visit my friends in the burn unit, and to show them my progress. Needless to say, they were very happy to see me, and very impressed with my new skin! (I'm pretty impressed with my new skin too, when it isn't itching.) I asked them about volunteering, and they gave me the number of the Bridgeport volunteering office, and also looked up for me a society of burn survivors that work to help other burn patients. I'm excited about looking into that a lot more. I wasn't able to see the collies this week (alas!) but hopefully when I go back in 2 weeks I'll be able to arrange a meeting :D.

This post is getting pretty rambly (probably because of the hour) so I'll just wrap it up here!

Day 39 - Some kind of normalcy

Today my mom's cousins from Colorado were visiting (they're visiting family on the east coast), and for the first time I felt capable of getting a little dressed up. Which is to say that I pulled on some Wellesley sweats, a shirt my mom and I got at Kmart, and my scarf from Rome. It was definitely putting the scarf on that did it for me - I haven't worn a scarf since Wellesley, I think, and it had become so much the norm for me. I clipped back my (clean) hair, and headed out to socialize. I still got tired out pretty easily (standing still is irritating to my legs if I do it for too long!), but it was an interesting experience hanging out with people who didn't know that I'd been injured - having something other than my recovery be the center of the conversation was a very welcome change. It's so easy to get myopic when you're living with a long-term thing, and since I have to be so careful with the treatment of my new skin and my one small still open wound (which requires a dressing change every day) blah blah blah, I'd almost forgotten there were other things going on.

In this same vein:  I talked with my advisor at Penn State the other day, and I'm going to be doing some research while I'm home! I'm also going to be taking a class online (differential equations... anyone know a good online place to take it?), and (I hope) doing some volunteering in the burn unit at Bridgeport. It's nice to feel capable of doing something other than focusing on myself!

Day 35 - 11 Harrowhouse

Today, I finally finished this book that I've been working on (on and off) for the last month. We watched a movie on Netflix sometime towards the beginning of the summer called (surprise) 11 Harrowhouse. It was so bad, I thought that it had to be based on a terrific book. There was virtually no dialogue, and the narration, which clued us in as to what was going on, was awkward and sounded as though it had been added after the movie had been made. It turns out that there are two versions of this film - you got it: one (the original) without narration, and one (the one we saw) with. HAH.

Anyway, this may be one of the only times I say this, but I think I may actually prefer the movie to the book. Don't get me wrong, the book was well written, but it was the kind of thing that sort of floofed along on this little puff of unreality and then WHAM BAM main characters that we've come to know and love in all their oddities are assassinated in each other's arms and it's over. Oops. I'm sorry. Were you thinking of reading this book? Don't worry, you'd have to ask me to borrow my copy, as it's out of print (Greg tracked it down for me). Which is to say, the difficulty of finding it outweighs the worth of reading it. I'm actually a little bit disgusted that I let myself be dragged along for so long. I did read a few other books in between, but I continued to return to 11 Harrowhouse. Today I finally sat myself down and finished it off. Bam.

Today was a pretty slow and straightforward day. Ken, my physical therapist, came by and we went through my stretches and did some strength exercises. He's funny - I have a great deal of strength in my legs, and I admit, I thought I was stronger than him. He's been letting me believe that for the last few weeks, but today we were doing 'press leg into bed' which is where you, the patient, lie flat on the bed and press your whole leg into the bed. Start at 5 times per leg, and add 5 reps every week until you're doing 15. Don't start at 15, you may hurt yourself. Anyway, the strength variation of this involved Ken holding my leg under my knee and keeping it up while I try to push it down. Normally, I get my leg to the bed with no trouble, but I think Ken was tired of letting me think I was stronger (I would have been too) and he just held my leg there. I was putting my entire weight and leg strength into getting my leg to the bed, and it wouldn't budge. I couldn't help myself: I started laughing. The whole thing was just too funny. I mean, how did I ever think I was stronger than him? Seriously, he's a physical therapist. He does this stuff all day. Plus, he has biceps.

Ken says my progress is 'excellent' and says he'll wait to hear the verdict from my appointment on Monday, but he will probably cut me loose soon. I am slowly developing his addiction to Arnold Palmer half lemonade half iced tea so that he'll have to keep visiting me. I'll write about this later when I get to talking about the weeks when I got home, but just so you can imagine him: Ken is about a half a foot taller than me and is probably in his early-mid 60s. He used to be in the navy, I think (he has an anchor tattoo on his arm, but it's old and the edges are blurred), and wears all white. His hair is white, and he has a crew cut. He hasn't mentioned anything recently, but he tells me that I have benefitted a lot from military treatment of burns, and based on his stories, I believe it. I'm also so incredibly glad that I got burned now and can take advantage of all of that knowledge, rather than 20, 30, 40 years ago. It's terrifying to hear of how burns used to be treated - from applying butter when you first burn yourself (DON'T - it actually fuels the burn. Cold water is the best initial treatment, NOT ice, as some people think.) to methods of cleaning (whirlpools, no morphine. blargh). Yikes, yikes yikes.

Okay - sunken treasure associated with the Taj Mahal just walked into the pawn shop (see Netflix - Pawn Stars)... more later!