Tuesday, August 5, 2008

Blahgging and a Few Vacation Notes

I've not been in much of a blogging mood and I've had a lot swimming around in my head. We ordered the scooter yesterday, and I am still having very mixed feelings about that, especially now that I'm in a sort-of remission for a few days (reduced pain, walking around more, though increased pain overnights). It's difficult to drive the scooter (or a car) for very long because of arm/neck pain, but at a fraction of the cost of a power wheelchair, the scooter is a huge bargain. And reduced pain overall from better seating and ergonomics will help. I've had these remissions before, and they're great while they last. The only problem is that I can't get my SI joint back into place as I normally can, and that's bothering me, though not paining me, constantly. I'm worried it will fuse in this weird way if I can't get it into place (joint fusion is the long-term prospect).

I feel like I have on armor all the time when I go out because I've been hurt so much by people that I feel automatically on the defensive. I don't feel comfortable and safe out in the world. Just the fact that the new equipment is different and I won't be able to have the same supertight turning radius worries me since I encounter so many inaccessible spaces. I googled "wheelchair fashion" and came across some good entries on Wheelchair Dancer's and BeautyAbility's websites. I do need some longer pants for work, but in general I think what I have is fine. I should pull out some of my favorite scarves and favorite shirts rather than saving them. I'm still the same me, I don't know why this loss of confidence and fear.

At my postsurgery followup yesterday, the x-ray tech, a really nice guy (one of the few who don't ask me personal questions in hallways), pointed out that the lower part of the fusion looks really good and there's not much of a "seam" there and that the top part still shows a line but fusion seems to be occurring. The PA was also encouraging, and I reported that I feel much better than I did before surgery at this point. In my low neck pain and post-mile-high-city energy high (higher elevation to lower elevation) and in feeling so well, I forgot to mention what all the heart/bp issues were about. The low spine is still an issue (plus SI, hip, knee), but I said that I think there's nothing to do for that except phone the rheumy for the big drugs (methotrexate or enterecept) if I decide to do that.

Oh, yes, done with PT for now! Except I still need to keep up with core exercises for SI/low back. But no more 3 hour trips for now. And my schedule's free, free, free of doctor appointments--well, except for the dentist tomorrow and a spine follow-up in October and needing to take my son in because his fingernail may fall out (an infection's gone after long round of antibiotics. If it's making me queasy, it will make him fall apart.). This is a far cry from 10 hours of various appointments a week and I'd like to keep it that way for a long time. It would be really cool not to have any appointments until the spine follow-up!! Those consume so much of my time and energy. I'm overdue for the rheumy but I am holding off for a while. Oh yes, I do have a cardiology appointment sometime. Damn. I may call the nurse and see if it's okay to cancel it.

We had a great trip to Colorado and enjoyed seeing family, and I was in heaven most all the time minus the stomach virus, but I'd like to highlight some access issues from the trip. First, though, it was really fun to see my nephews and nieces. We babysat one evening, and my nephew's at that absolutely lovely age when I can ask him, "Are you making a mess?" (nonrhetorical, I needed to know), and he nods his head and says, "Yeees!" Got to love the honesty, so much easier then.

We looked at houses in Colorado because we wouldn't mind moving there or a few other places and there's not really a reason we can't do so except that selling our house may be slow given the market plus our time limitations to get it ready to sell. Hubby works at home entirely, I work at home a lot and am thinking about changing jobs, hmmm.

We will not be moving to Highlands Ranch, however. It needs a big sign saying, "Disableds not welcome here!" The entire "city" (unincorporated) was built by Shea Builders and went up quickly just over a decade ago (well after ADA) in response to some new large corporate presences. With every house built by the same builder, with almost every floor plan the same in each "neighborhood," with homeowners limited to painting their houses except from about 5 limited colors, with parks and schools evenly spaced and appearing the same distance apart and just alike, you really do feel like you're in Edward Scissorhands. My kids felt confused and disoriented. Not only is every house 2-3 stories high with a narrow stairway that could make wheelchair lifts difficult, but there are curb cuts only every half mile or so. Although the driveways are front entry, the driveways are curbed! In a post-1990 neighborhood! So that means if someone blocks the sidewalk with anything, you can't just swing down one person's driveway, into the street, and go back up the next person's driveway. Nor can anyone in a wheelchair get access to the street from their own house.

Littleton, Colorado Springs, and Boulder have some one stories and a few houses for sale and rent that are specifically wheelchair accessible. What a contrast. And Boulder has more accessiblity from what I can tell, or at least they want to appear that way. The McDonald's there (not our choice! younger nephews and nieces) has a big hole in the floor of the men's disability stall (no, I didn't go in the men's room, was reported to me).

Speaking of restrooms, at the second rest stop up Pike's Peak, the wheelchair accessible restroom is blocked off and to get into the other restroom there was a set of difficult (extremely narrow) stairs. It was also difficult to get into the stall (no, not my size, the way the doors were hung). We asked about an accessible restroom before I descended, and the employee said he'd unblock the other one for me if I used a wheelchair (I said it was in the car--I consider scooter and wheelchair synonymous for accessibilty purposes--but I was too tired then to go back and get it or to walk all the way back around and inside the building). I don't like the "if I use a wheelchair" part since people who use walkers, have knee surgeries, arthritis, use crutches, etc.--or me!--would also have problems. The accessible restroom on the inside should have been clearly labeled that they'd allow us to use it, and there should have also been signage at the outside restroom indicating where the disability accessible restroom was.

Honestly, I've driven a number of roads that were just as difficult or more difficult than most of this road, though in different ways, with the exception of some of the 10-mph hairpin turns over the abyss. And we've been up Mount Evans, which is actually a higher mountain and a higher road (along beautiful tundra!). I saw two people in manual wheelchairs at the top of Pike's Peak. I didn't grab my scooter at the top because of all the gravel. The new scooter will be able to handle some gravel, yessirree and will have a higher underbody clearance. Kept the kids at a reasonable distance from the unshielded dropoffs. Glad we didn't go up the previous week when we planned since a teenager drove off the edge on purpose (bad breakup, he survived). There's nothing like a 40 degree temperature drop on a 100 degree day--there were a few snowflakes and a bit of slushy sleety stuff coming down onto our windshield as we went up. Snowflakes at 60 degrees!

When we were at Garden of the Gods (the main trail is very accessible--sidewalks!) someone parked in the wheelchair access aisle next to us, blocking us and the other two to three disabled people from leaving. We met the offender on the way back to the car and despite some initial reluctance to move her vehicle, she claimed to "understand" since she has a disability permit and apologized. However, she didn't have a disability permit that day, and I don't think she understood that the problem wasn't just that she blocked the passenger doors--I needed the curb cut to leave the sidewalk. This is an ongoing issue--with the heavier scooter at 160 pounds, even my husband won't need to be moving that over the sidewalk when people block it, and he's risking his back (he has moderate back pain too) when he picks up the current one. She said it was her daughter's wedding day and they'd just be there a while to take pictures. Maybe this is callous, but so? Everyone else parks just a few steps away in the street when the parking is full rather than holding others hostage. When we left the lot, she parked back in our space, without a disability permit.

In the restroom at Garden of the Gods, I had to start my turn and back up and move foward again to finish making the tight turn into the accessible restroom area. And a young, healthy woman walked into the restroom and around me and my daughter and went into the accessible stall and slammed the door shut...

It's always something. It's always an adventure. The armor is on. Sometimes I had trouble maintaining blood pressure there, especially with higher pain levels in the evening, but everything worked out fine. BP and heartrate were mostly fine in higher elevations. When I returned home though, BP bottomed out for the first 24 hours (maybe because it goes higher in the mountains?).

I mentioned my fear of mountain lions in comments on Elizabeth's blog lately; I also fear bears in certain areas. Yesterday a mountain lion walked into a couple's bedroom in Colorado and grabbed their 75-pound Labrador from where it was sleeping on their bed. And we saw on the news Friday night that a black bear marched across the greens at the U.S. Senior Open (in Colorado Springs, where we were).

The van's in the shop (passenger door won't close automatically, big problem for me, maintenance, some kind of brake problem, a ping), so I'm hostage to the house for a bit.

What I recognize upon my return after visiting other houses is how really accessible my house is for me, with or without the scooter, in so many ways. The kids' rooms and my husband's office are upstairs, but the kids spend most of their time downstairs and I'd rather not venture into the office. Everything I really need is downstairs (although there's my larger desk and file cabinets upstairs). And our floor plan is really open and very navigable for me. We even have sinks at two different heights in the bathroom. For having a 1 1/2 story house, we really chose a very accessible floorplan, one that works better than most any house I've been into, even others built at the same time. Certainly better than my parents' house, which my dad built! We really couldn't get my wheelchair through the doorways when I was bodycasted, though we could when I was sitting up. The wheelchair could only get into the door of the bathroom, too, which meant transferring with a walker and injuring my mom as she tried to help me. And that meant sitting in my room for a few months and my dad periodically throwing his back out severely when moving my 65 pounds + cast to the living room couch or out to the borrowed station wagon. If we could do so someday, I wouldn't mind having our current floorplan built somewhere else, only with the bedrooms added on downstairs rather than upstairs.

As much as I lament not being able to access my whole house as much as I like, I really do enjoy most of the space and that I can get around easily. I'd rather have this space than a house built by Shea, which would be difficult to navigate.

PS. The Coldplay song references the Delacroix painting on the cover of the album, which alludes to France's Charles X.

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