Thursday, March 21, 2013

Things I Should Have Noted Earlier

I've just started going through the 44 previous entries on this blog to add labels to all of them. It's been an interesting experience. While at this point I more or less take it for granted that my leg is outfitted with a large, bulky piece of medical equipment, I also take it for granted that my leg is straight. Looking back, it didn't use to be that way.

I've spent so much time recently focusing on what I can't do at the moment, like walk far or run or go outside in the snow, I simply haven't taken the time to realize how far I've come. Between late December 2012 and mid January 2013, my lower right leg was corrected by eleven degrees. The chances of my developing arthritis in the next ten to twenty years have gone down dramatically. I get to look forward to a life of increased activity.

That's really something.

But aside from that moment of quiet, I did want to take the time to address some loose threads from earlier in the existence of this blog…

1) The back-story updates: I'll finish those up eventually. I'm on spring break until the end of the month, and should have the time to at least make a solid dent in those.
2) The update on wheelchair accessibility at school. I've spent a lot of time thinking about all the particular details. While my experience is particular to the one building of my high school, the entry should (or at least could) be a worthwhile venture.
3) An update on pin care and getting clean with the frame. For the issue I was most preoccupied with before the surgery, I really haven't written much about my actual experiences with pin care, mostly because my actual experiences with pin care have been fairly non-dramatic. This will be rectified shortly.

And as for things I mentioned earlier and then never mentioned again…

I finished knitting my blanket. It is large and very bright and rather warm. I haven't woven in the ends of all the various strands of yarn, but still. It's mostly done and, at some ridiculous square footage, is an accomplishment I'm rather proud of.

For a while, I'd been wearing contact lenses. Then came the frame. I haven't worn contacts in months, though hopefully that changes soon.

Rhino the Hippopotamus has kept me company in the corner chair, which for the purposes of this blog I have rechristened Recovery Chair.

Sunny the Golden Retriever remains quite fond of his couch.

Way back in October and November, I kept mentioning my progress in Stephen King's The Stand. In the next calendar year, I can confirm that I did, in fact, finish the book.

In other things which I am done with, my walker currently resides in the trunk of either the minivan or my father's car and I have not seen it since the start of break.

With the frame now mostly taken care of, my next adventure is the college process. I'll be hearing back starting tomorrow all through the end of the month, it looks like. Well, that and catching back up to speed on this blog.

Oh! in a final note for this entry, my mother got me a towel with a Ferris wheel on it today…it is currently one of my favorite things ever, mostly because I'm immensely fond of Ferris wheels.

The End in Sight

Unlike the other posts on here from when I've had appointments with Dr. Sundberg, this post will have no photos of x-rays. Unfortunately, I was not thinking particularly straight during the appointment, which was last Wednesday, the 13th. My mother drove me there from school through a route that, as per her traffic preferences, included no highways. No highways was fine. Less fine was the fact that the route Google sent us through involved a one-way street system that was actually little loops through an industrial park and it was all horribly confusing and… Basically, by the time we arrived we were both rather frazzled and concerned we wouldn't be able to make it back home (we were). So, long story short, no x-ray photos.

With that said, there were x-rays. It seems like with each visit, as I grow progressively comfortable on my feet without the walker, the x-rays get easier, except for when an x-ray involves laying the frame on a table. The frame is round and likes to roll, so the frame needs help to stay still for the x-ray. Also, the more appointments I go to, the fewer x-rays they require. Previous appointments have involved standing x-rays but this last one only required x-rays which were taken while I was laying down on a table.

First off, the frame is not ready to come off yet. The site of the osteotomy (where they took a chunk of bone out so the straightening could begin) is still very visible, though apparently progress has been made. At least, Dr. Sundberg was talking about progress, though I couldn't really see anything.

He was also talking about when the frame will come off. As in, he takes one look at the x-ray and asks me when I'd like to have it off.

I took one look at the x-ray and became quite worried that the friend impaling my leg would keep on impaling through August.

But, apparently, I'm on the homeward stretch. I've been scheduled for a follow-up April 19th, at which point more x-rays will be taken. Then (hopefully) the appointment will be made to remove this thing—I'm targeting on or around May 15th, with all my school commitments. By that point, I will have had the frame on for twenty weeks (today is a day past twelve weeks…it really has been a while, hasn't it?).

As far as the removal goes, I'll need to be put to sleep, though I've been assured that it isn't a heavy sleep—just a blast from the gas mask ought to be enough (let me pause here to quickly note that the smell of anesthesia from the gas mask is number one on my list of traumatizing smells; number two is the smell of hospital saline, courtesy of the six day stay the frame earned me just about three months ago). The tips of the pins, from what Dr. Sundberg said, are coated in chemicals which are designed to promote bone growth. This has a number of positive outcomes, none of which involve the act of ultimately removing the frame. Apparently the pins need to be given a nice twist to come on out. Hence, the anesthesia. Still, the procedure should last about ten minutes. From what I gleaned last week, frames are often removed on Friday so the ex-frame wearer can return to their normal life on Monday, no longer burdened with pounds of leg-happy metal.

After a tedious twelve weeks with way too much time spent in the company of the Recovery Couch and the Recovery Chair, it's freeing to know that an end is, at long last, in sight.

Things That Fit Over the Frame

One of the unfortunate truths about the Taylor Spatial Frame is that clothing and frames really don't get along too well. Shirts—fine. Hats and gloves and scarves and things of that nature (in short, Minnesota necessities)—fine. Socks and shoes—fine.

Pants (and underwear and shorts and anything which has to fit over the leg)—less fine.

So. The point of this post will be to address my general solutions to the problem of getting things to fit over the frame. Unfortunately, none of the situations are really flawless. Also, none of them do anything to deal with the fact that a Taylor Spatial Frame is an impressively bulky object with a tendency to get in the way of everything. Today during lunch it was cheerfully bumping up against my mother, who was less than happy, considering that it's a rather solid metal object. Unfortunately, I really don't have much frame-related sensation and couldn't tell what it was up to…

Which is entirely beside the point, of course, but still worth noting.

Now, how I've* been dealing with the problem of getting clothing to cooperate with the frame…

Underwear

Solution 1: Don't wear.
Why it works: Nothing goes over the frame, so you neatly sidestep the problem.
The problems: See: above.

Solution 2: Large boxers made from knit fabric with stretchy waistband.
Where to find: These can be found at more or less any big department store, from what I know (which is very little); mine came from Target. While the above description makes it sound like you won't be able to find suitable underwear from a brand name, fear not.
Why it works: With enough stretchiness, the things should fit easily over the frame. However, the underwear require some coaxing over the frame, which isn't a big deal. From personal experience, as a note of comfort for those who don't particularly like looking at the frame, coaxing underwear/pants over a frame while steadfastly not staring is entirely possible.
The problems: The underwear are kind of loose. If that's to your taste, great. If not, less great.

Solution 3: Underwear with one side Velcro'ed
Where to find: The Internet (or make them yourself). I don't think you'd need to do much searching…
Why it works: First off, if you don't like boxers, these ought to feel relatively normal. The Velcro aspect of the underwear also means there is no coaxing over the frame involved.
The problems: The Velcro has a tendency to dig and be generally aggravating. Proceed with caution.

Shorts

Solution 1: Even though the calendar has turned to spring, it is currently winter in Minnesota. Shorts are not a concern of mine. Yet. That said, having a stretchy waistband is a must, as is loose fabric (or a zipper up the side…)

Pants

Solution 1: Loose sweatpants. Women's sizes work better than men's (I believe they grow wider before growing taller, while that rule doesn't necessarily hold as true with men's sizes?)
Where to find: Department stores.
Why it works: As with solution no. 2 for the underwear, some coaxing will be involved but so long as it goes over the frame…
The problems: If the waistband isn't in particularly good repair, be wary of a tendency to fall off (pants and such with a frame on will necessarily be wider around the waist than normal life pants and such). Also, while there might be lots more fabric, it will still probably stretch over the frame. And the frame will probably then poke holes into the sweatpants. And then they'll be ruined.

Solution 2: Pants with lots of zippers (I think cargo pants work…).
Where to find: We went to REI and found a few pairs (women's sizes, again—the men's sizes were just too long/too wide in the waist).
Why it works: Zippers are wonderful things. Also, wearing sweatpants for months and months does get a bit monotonous, no matter how much fun it might sound like at first. Getting in something vaguely normal…terrific. Really, really terrific.
The problems: First off, with anything that doesn't happen to be sweatpants, be warned: the entire frame might not be covered. Also, it's much, much, much, much harder to find articles of clothing of a doable size for things that aren't sweatpants. In finding a pair of cargo pants, we went through many more, most of which didn't even come close to fitting. Clothing with the frame can be a struggle.

Solution 3: Custom-fitted pants.
Where to find: They'll need to be custom-fitted…
Why it works: See: "custom-fitted"
The problems: Custom fitting is, as it turns out, very convoluted. My mother's working on a pair of khakis and the amount of dedication involved to make the khakis somewhat compatible with the frame is impressive…a pair of zippers, seams ripped wide open, bits of bonus fabric sewn in. This is by far the most labor-intensive of the solutions detailed here.

I've heard that snap-on pants—like warmup pants for basketball—work well, too, but my parents haven't found any up here in Minnesota (or on the Internet). I'm also mostly happy in sweatpants, so there's that, too.

I know these really are far from perfect, especially given my complete and utter lack of knowledge in all matters clothing-related (and my inherent male bias), but while bearing a frame a full return to normal is rather difficult. Hopefully this entry is helpful to future people with frames. I know it would have helped me a couple months ago.

*When I say "I," this is a collective sort of term that includes my parents, who came up with most of the ideas detailed here

Tuesday, March 5, 2013

Months and Months

The other night I had a dream where components of the frame were falling out of my leg. I can't remember my dream-self being in pain, though the ends of the pins were a bit bloody, in a fascinating way. I think I was holding the pins. It was really quite interesting—after two months of seeing the things sticking into my leg,  I can remember being a bit nervous and knowing I'd need to return to the OR and have the thing put back in. I wasn't super happy about that bit.

That was just a dream.

I'm back in my chair, typing this up. I'm wearing oversized sweatpants, warm and pretty well covered under some of the seventeen stripes on my completed blanket. Showering will still in all likelihood be the highlight of my day (I like getting clean). And, true to form, the frame is still well and truly fixed to my leg. The five halfpins and the two piano wire pins are fixing the bones in place.

Reflecting back on my experience so far, the month of December was dedicated to stressing about college and general non-frame stressors. Back then, in the good old days, I had no idea what it would be like to wear one of these things. I thought it might be painful (it isn't) but that after a couple months I'd be able to do normal people things (kind of). Then January was dedicated to realizing the magical powers of the frame, especially noting just what a large difference has been made to the alignment of my leg.

February, on the other hand, was less fun. Over the past month or so, I knit about six feet worth of blanket, probably more, part of a hat, did my homework, played approximately a bazillion rounds of some bubble shooter game which I got bored with, read all the Harry Potter books, dreamed up more ideas for novels than I'll ever actually finished, went to school, did some homework, counted way too many flies for Bio and processed too many notes for the same class, and watched roughly ten thousand episodes of Top Gear (U.K.) despite not caring one iota about ridiculously expensive cars and finding the presenters occasionally amusing at best. And that was it. That was the entirety of the month of February.

I'm hoping that March is more fun.

Now, I know the idea behind wearing the frame isn't to have fun. And trust me, going in I never once stopped to and decided being impaled by a bunch of metal rods would be a blast. That said, I stopped to think about the first couple weeks. I was worried that the frame would be painful in the first couple weeks, concerned about not being able to walk for a couple weeks, concerned about not returning to school for a couple weeks. I never stopped to reflect on the fact that I would still be processing some pretty incredible pain medications. I also never stopped to reflect on the fact that this is a full-on six month* extravaganza of being visibly post-surgery. Every other time I've had surgery the meat of the recovery lasted a few weeks or so.

The meat of this recovery is lasting a while.

It's just…I guess I never considered the possibility that the most difficult part of wearing the Taylor Spatial Frame wouldn't be physical at all but rather mental. Yes, the difficulties have their roots in my physical limitations (as in being unable to walk for very long, not trusting cold weather, being unable to go outside or go for a walk, not being able to bend my leg suddenly) but they manifest themselves in a feeling of uselessness and pointlessness which scares me quite a lot. I've found myself less and less motivated to do anything. I don't argue against blatant wastes of time (ahem, Top Gear, ahem) like I would otherwise. Things that would normally really excite me, like the Academy Awards, lose a bit of their luster.

With that said, I'm still making progress. Though the walker still comes with me to school, I barely need to use it and have managed to forget it in a classroom once or twice or more. At home, I'm entirely self-supporting. And, in perhaps the greatest accomplishment thus far, over the weekend I managed to deal with a psychotic golden retriever all on my own.

I believe I mentioned Sunny earlier in connection with his great love for sleeping on the furniture. One of Sunny's other personality traits is he really doesn't like it when my father's beeper goes off. On Friday, I believe, I was at home. Two of the brothers were off for the day, one at a fencing meet and the other at a swimming meet. The other brother was upstairs cleaning his room. I was downstairs with Sunny and, little known to me, the beeper. The beeper went off.

Sunny also went off. He started panting deeply and lunged over the arm of the chair into my lap. For a few minutes, I did my best to just pet him as he hyperventilated in my lap. After a while, though, it was time to call somebody to figure out how to address the situation so I pushed Sunny off my lap. Sunny started trying to dig a hole in the hardwood floor.

I was told via phone to locate the beeper and turn it off. Unfortunately, this was the first time I'd ever had to turn off a beeper and I was standing up with Sunny next to me, freaking out. He got onto his hind legs and put his paws on my shoulders. I wasn't concerned about him being rough—Sunny is an extraordinarily kind and gentle dog, though I was worried about him hitting the frame on the way down. He didn't, though it was still a scary situation.

Everything worked out okay in the end. Sunny spent some time outside, chilling out in many senses of the phrase, and I made it through the day without watching a single episode of Top Gear.

Long story short: I wish I could go outside to add some spice to my daily routine, even if it is Minnesota and the outdoor world is really a collection of ten thousand shades of gray. Or go outside and feel relaxed and normal again. But, at the very least, I now know I can handle myself with the golden retriever.

I'm also capable of forgetting the walker at school, but I'm less certain that's a good thing.

* I'm not sure about the six month figure. That's a rough guess. Based on my current school schedule, the frame could feasibly come off in mid-May or the last few days of March. Mid-June is also a possibility, depending on the willingness of my school to let me not do anything for a week when I could easily delay not doing anything until after graduation. Dr. Sundberg estimated last month that it'll be able to come off at the end of April but being able to come off and actually coming off are, with school, two very different things. I'll have a better estimate at my next appointment, which is sadly as of now unscheduled (there was supposed to be one February 25, but that got canceled).