Sunday, August 31, 2008

Just So I Don't Drown

My husband's company subsidizes a gym membership at $15 a month, and though they have a pool, there are no pool classes offered. I definitely couldn't keep up with most water aerobics classes, which were extremely difficult for me even 3 years ago; I had to quit because I was never out of extreme pain. And a lot of the senior water classes would be too difficult for me, while PACE arthritis classes are too easy for me. Through the Spondylitis Foundation, I found out about the Arthritis Foundation, which does offer water classes for arthritis patients throughout the nation. And links back to our friends from many areas of our life, who teach Tai Chi classes across the area, including for the Arthritis Foundation. They're able to recommend classes/exercises that will work best for me. Once the weather cools off, I'll have to go to an indoor pool, and I wouldn't mind going to a class at least some. My body craves exercises but it hurts to do it so much that often I can't continue other than isometrics sitting down. And yes, I've considered Tai Chi, too, but maybe not when I hurt so much so that I can do some of it standing. I'd get more out of water exercise right now.

I can't tell much difference with the wheat free diet this time around, though I think it improves my health overall. Some people say completely starch free for spondylitis, and even dairy free too, but eliminating all starches (corn, spelt, rice, potatoes or sweet potatoes) is tricky to do without crashing your system. I have found that too much tomato does aggravate everything.

Saturday, August 30, 2008

Gustav = Unease

So Gustav is a Category 5 hurricane expected to hit somewhere between the Texas coast and Florida. New Orleans is being evacuated, no SuperDome or emergency services this time. FEMA says that the levees won't hold in New Orleans. My in-laws were leaving on a 40th-anniversary vacation in Jamaica tomorrow--Gustav's already past there, but Hannah may be over Florida when they return. I know a number of people who live in this zone and it leaves me worried again. One's a single mom with severe physical disability and a toddler. I don't have a good feeling about all of this and am worried about a repeat of three years ago.

Several friends and my sister's family survived Allison a few years ago and others had to evacuate with Rita. I darn well don't trust FEMA or any other government agency with disasters. When there is no warning and neighborhoods start to flood and people are on their roofs or sleeping in the attic, where are they? Not getting people out, they aren't, not anyone. FEMA's not going to put you up in a motel or even a shelter even if you have a toddler in a waste-filled, danger-filled house that would get CPS to take away said toddler in an everyday situation. They expect you and said toddler to live there, sans air conditioning, refrigeration, telephones, or other amenities in high heat, sleeping even if pregnant on low cots in mold-infested rooms with no working electricity, with no transportation because the car's been flooded while you and everyone else wait months and months to get your home repaired because everyone else is also waiting for their homes to get repaired. Money from insurance is slow to come, is inadequate to help with expenses, and other people can't help out because they're all busy with similar situations. My sister was home alone with her daughter when Allison hit. I listened on the phone with her as she wept in fear as water started filling her street and then filling her home while she prayed her husband could make it home and they could get out. There was no warning for them and no assistance. While there's some warning with Gustav, there is no organization, no decent oversight, no contingency plans when it comes to any natural disaster. Good luck, people.

Tuesday, August 26, 2008

Shhh! It's Not Really Fruit(TM)

Building on Dave Hingsburger's recipe day, we solicited our son's help in making menus this week and since he wasn't allowed to choose hamburgers every single meal, he chose smoothies one night and poppy seed chicken for last night. Into the yummy concoction goes:
2 cups mixed berries (fresh if available)
1/2 c. 2% milk
1 cup peaches
1 cup low fat yogurt
2 cups ice
1 banana
couple of tablespoons of honey (optional)

This is very simple to do. Send husband to store. Throw everything in blender. Turn on blender. Put the cover on first, of course.

For the anaphylaxis victim in the family (moi), my batch gets made first, minus the banana. Add sandwiches for the rest of the family. Asparagus and some rice for me, who's trying to go wheat free again since that seemed to help once, although it was probably coincidence/remission. Listen to sound of blender whirring in kitchen while lying on the couch.

Tell husband I'm eating on the couch, but go sit at the table, confusing both of us. Quiet dance of triumph for getting significant fruits into son. Repeat on a regular basis (snacks, add ice cream to his to fatten him up, whatever).

One batch will make about 2 servings. Use less ice if any fruit is frozen. Husband wonders how smoothies would taste with champagne added. Wife rolls eyes. I had forgotten my son really likes tater tot casserole--we'll have to try it again.

Sunday, August 24, 2008

I Can't Believe It's Not Humus

You say "hummus," my mom says, "humus..."

My son, whom we've earlier in his life convinced to try tomato things by saying, "it's like ketchup" and broccoli by comparing it to trees, says, "You can't tell me it's dip! I know it's hummus!"

He's narrowing his food choices again, and we're desperate to get a few more things into his stomach. He's not getting enough into him lately. Most foods don't get touched. He's gone from about 90%ile on weight to 60%ile over the past two years, meaning he's not gained weight in that time. And now he's eating even less...we're trying to be creative and also let him help pick meals from a list (part of the autism is that he can't generate lists/ideas on his own very well, so giving him some choices helps). It worries me, but we can't force him to eat. Not sure if we should be contacting a feeding expert or not--I know a lot of kids are very picky eaters. I'm not going to make him eat "leaves" (salad), but if only he'd get both more quantity and variety down.

We do go to the farmer's market and the specialty grocery, but he rarely shows any interest in any of the foods--I'll buy those he does show interest in. You can bet I bought the flax bread he wanted! He will eat bananas, apples, oranges, sweet potatoes, canned peaches, corn, carrots, broccoli, a few kinds of meat, chicken, fish, cheese, yogurt, and cereals, rice, plain bagels and waffles, but he won't eat most any fruits or vegetables other kids would like. He won't eat pasta. He usually won't snack. No beans, no nuts. No pineapples, no raisins, no other similarly sweet foods most kids like. Now he's dropping foods out of his diet that he's previously eaten, such as peanut butter and jelly, which was a good snack with some fat in it for him, and salsa, which gives some vegetables. No more applesauce, no more olives. He'll eat fresh peas or beans but not the pod, and most of those are out of season.

As much as I worry about this, he still eats far more than my niece, who is 5 years old and has gone from being ahead in her development in her first year or year to being severely delayed and stunted in her growth, with most skills on par with a 2 to 3 year old. She mostly gets Pediasure and whatever tablespoons of a couple of foods she will deign to eat. She's continually irritable, probably because she's not getting enough food. My sister's at wits' end with this. The pediatrician told her she didn't need the Pediasure, though she'd get no other protein source if she didn't.

Friday, August 22, 2008

No more static

Remember how I've complained about all the static electricity the old scooter generated? The friction from wheelchairs and scooters continually creates static on most any floor surfing, even tiles.

The new trusty Amigo comes with a thin flexible grounding wire underneath it that touches the ground (it moves so it doesn't snap off or anything) and continually destatics you; no more really nasty shocks. These people thought of everything!

Thursday, August 21, 2008

New scooter, new scooter!

We've been talking about new purse smells on Elizabeth's blog, so it was funny that the first thing my daughter commented on as the new scooter came out of the packaging is the new scooter smell (leather seat).

I can't believe how much more comfortable this is than the old one!!! I had forgotten just how much more comfortable. The padding on the other one is like a brick, very thin when you take the cushion out. The new one feels like a good office chair.

The powerseat means I can get my legs under tables and a footrest isn't mandated. The longer leg length is also slightly elevated for comfort. The handlebars are 4 inches shorter than the GoGo allowing me to get close to a table rather than having to lean uncomfortably in or dropping food on myself. Powerseat allows me to elevate enough to use kitchen sink, do dishes *comfortably* (!), can chop vegetables from it and handle other things if I want to. Plus as a better scooter driver now the turning radius isn't as much of an issue as I would have thought, though I know it will be in some businesses. Much bigger basket. Higher back, supports more of legs, though I'd like an extra inch. Can reposition the tiller myself, as opposed to other scooter. Even when the tiller is pulled in close to avoid neck/shoulder strain, I can still get my legs out! Handlebar situation far more comfortable and ergonomically placed.

Can roll over upturned rug without stopping the thing, bodes well for door thresholds. The antitip wheels swing up so there's more clearance if you're going over a bump instead of being stopped short.

Seat will stay freely rotating rather than locking into place at one of three positions so that I can't move back and forth easily.

Did I say comfort? Gotta run--with the new scooter.

I love you, Amigo people!

Wednesday, August 20, 2008

Tomorrow, tomorrow...

...a scooter tomorrow, it's only a day away...

Each morning this week, after getting up late after a pain-filled night: why the hell did I quit my job? I could keep pushing on.
Each evening this week: thank God I quit my job. The pain's unbearable.
My memory of pain is always so short. I can't remember the actual pain, only the location of the pain and how much it limited me at the time.

Had good luck with getting my son's school to accommodate for this year. Both kids have great teachers.

...scooter dreams.

Tuesday, August 19, 2008

Scooter Here Thursday

The scooter delivery people just called to ask if we'd be here tomorrow afternoon--it's the only time we won't be here all week! So said scooter will be here Thursday morning. Part of me wonders if I'd have been able to stick it out longer with work if I'd had the new scooter instead of the excruciating seating on the GoGo (alternate, excruciating walking)--it was supposed to be here around August 7. Another part of me wonders if I'd have quit if I realized my bad pain flare was from early pms, which didn't make me grouchy at all but which does increase my pain greatly. We'll see.

Monday, August 18, 2008

A Patient Patient?

The answers to last Monday's quiz are posted over at Donimo's excellent blog, Chronic Holiday. Go visit!

In the children's book The Little Engine That Could, which was my sister's favorite, only the little engine is willing to try to pull the heavy load up the mountain, willing himself up it. He thinks he can and therefore does. But what if he thought he could pull the train up the mountain but overestimated himself and had a terrible breakdown and could not be restored to his original state? Would it have been worth it after all, Little Engine?

What if that Little Engine broke an axle and lost a wheel and derailed, spilling dangerous chemicals into a local neighborhood, creating an "airborne toxic event" and necessitating an emergency evacuation like in Don DeLillo's White Noise? Would we be praising that Little Engine then, people? Or what if the Little Engine knew he could but that he'd be incapacitated the next week? Would all the other Little Engines pull out the medical advice? I never liked that book, Sam I Am. I did like Green Eggs and Ham.

I have to say my favorite children's book was The Little Red Caboose, which always came last. Though I guess right now it would have to be the big caboose. Now that I think of it, other favorites were The Wait for Me Kitten and Chicken Little. I got kind of caught up with the little drama queens. Though unrelated, I also liked the Where's the Baby? book in which a little girl looks everywhere for the baby, which turns out to be herself. She's the baby. That darn book fooled me every time. I'd have my mother read it over and over. Where's the baby? Ooohhh. Where's the baby? Ooohhh. Some foreshadowing seemed to be missing--why wouldn't we know she's the baby from the beginning of the book? I'd have her read it over, trying to see how it would work. My sister liked The Pokey Little Puppy.

How much does being a patient make you The Little Red Caboose? How much time do you spend being a patient? For me, for much of the past year, I spent an average of 10 hours a week away from my work and family in doctors' appointments, radiology, lab, physical therapy, procedures plus recovery time, and the commute time to these appointments. For the first time this past year I had to choose among and even turn down modalities that work. For the first time last year I wondered how I could get my work done. Sometimes I couldn't. Adding ten hours a week to a busy schedule is a lot for anyone, not to mention the additional pain or illness that created the need for the visit! Sometimes I still "think I can" and keep pushing on, at other times I unquestionably can't.

Lest I sound like I have Munchausen's (I really don't like medical attention, I'd really rather be left alone), that's not that much time during the diagnostic process. It's two PT appointments a week rather than the three recommended, plus an MRI or a follow-up for the MRI. It's the nerve testing one week, follow up with the rheumatologist the next. Or it's the PT plus a consultation with one of a couple of specialists for related problems, with the radiology or lab scheduled the next week since you have to work sometime. Or it's one of a couple of procedures under anesthesia plus recovery time that week and the next, no PT that week. Or it's your regular visits to the dentist, eye doctor, or regular doctor, carefully spaced out. Sometimes you tell the doctors you can't deal with appointments for another month or two and that you have to drop out of PT and keep it up at home, or that you can't do the recommended procedures now because you need a break. You hope that they don't drop you as a patient. You prioritize, let the smaller issues go, new ones crop up. You try to clear your schedule only to see it fill up again.

Being a patient really can be a full-time and expensive "job." There's extensive insurance paperwork for claims the insurance company still won't pay after you provide the documentation, the extensive time required to find, research, and shop for, and purchase medical equipment and find or purchase adaptive transportation. Often there are waiting lists to be seen by DME people. Realistically, sometimes you have to take shortcuts, postpone procedures, space out your appointments, cancel out with family to make room for these changes. Something's got to give (and it's not going to be my mind, baby!).

Pain diminishes my ability to get things done, even reading or sewing. I become unable to watch television. I plod on very slowly, trying to get things done, trying, trying. I think I can, I think I can. But at what cost? Sometimes I can't. Last week I couldn't. I had a flare of spondylitis pain and could not sit up more than a few hours at a time without excruciating pain. I couldn't endure an eight hour required training meeting last week. There was no way I could have sat up for that long. I was tired of fighting, tired of struggling, tired of feeling I didn't have enough time for my kids as I struggled all day to get small amounts of work done. So I quit.

After less pain this weekend, I began to second guess myself about this decision. I liked doing that work, loved it really. The pain kicked in again tonight and I realized how difficult it would be, though, nearly physically impossible at times, really. I make it to the top of the mountain, but it takes the life out of me. I'm sure when the pain level goes down again, I'll be back to wondering why I made such a decision. I get my work done and I do well at it, but it's increasingly physically difficult to go to work or to work long enough hours, especially with the medical appointments. Especially since I need to spend more time with family, spending hours out of the house with them. My children don't need to be trapped in because I've had to use my hours out for the day for work or a medical appointment. My husband takes them out, but he can't do it all. I am not doing well at explaining this right now because of pain.

Today I remembered in the children's story it's the tortoise who finishes the race first, not the hare. The one who keeps plodding on. I used to be the hare. I've looked at my old calendars, through my paperwork that evidences how much I could do. Now I try to keep going. There's probably other work that I could do, can do, more of it from home. We'll see.

Tuesday, August 12, 2008

Stop Me Before I Volunteer Again

I want this magnet (and a few others). See for this and other merchandise. (1950s era advertising photograph of beautiful, smiling woman and a superimposed caption: "stop me before I volunteer again.")

Last night I had to leave before the nearly 3-hour PTA planning meeting was over (can't some of this be worked out in committee?) because the signs were getting stronger that if I didn't leave, I was heading toward passing out because of the severe pain of sitting that long. The new scooter is on order but not here yet, and the other scooter is painful, though the seating there is better than any chair at the school. After the meeting I sent out a couple of emails I needed to, including one to a friend I've known since my daughter was a toddler, if not a baby. She sent back a reply to the PTA question, but also asked if I'd be able to walk again or was still in recovery. I presume she meant from the surgery.

I clarified that I am able to walk for short distances, though I give out very quickly and sometimes I'm not able to get out for the next few days or can barely function if I do too much by putting myself in increased pain or risk passing out. I have to pace myself.

Both the question and my response make me feel odd. Since she's a friend, though not a very close one, I don't mind clarifying. I think people thought the surgery would cure everything, and really the surgery just touches on one area, not the most painful one. It does make me worry if people think I can't walk that seeing me walking around is going to lead to odd reactions. I guess it will. Using the scooter still makes me uncomfortable, and not just because of the seating. Sigh.

Speaking of perceptions and expectations, I saw a news story on the Olympics that says the girl who appeared to sing at the opening ceremonies was a lip syncher and that the seven-year-old who actually sang was pudgy and had crooked teeth. Why do people expect such physical perfection even from children, so that we can't accept their beautiful gifts? I haven't been able to watch the Olympics yet since our TV service has been out.

Monday, August 11, 2008

Visit Chronic Holiday...

...for a new Monday quiz on unusual advice given to me for back pain. Special bonus: my diagnoses! Can't wait to see how people vote.

Sunday, August 10, 2008

How People Arrive Here

A lot of people arrive at FridaWrites as regular readers or through links to other disability blogs or apparently use feeds. Don't worry, I keep people's information private. But I am interested in the search terms people who aren't regular readers have used.

I started wondering about my content when I noticed people arrive here looking for serious medical information. The information I provide on MRI attacks, while written in a humorous tone, definitely wouldn't lessen anyone's anxiety and might significantly increase it. Nor would what I write about scoliosis and bodycasts or catheters make people worry any less. Here are some of the terms:
panic attack in MRI
discovery channel medical mysteries headaches
bodycast scoliosis brace
one day I will wake up and realize I've made up everything -???
catheter torture (I hope this is an anxiety issue)
medical mystery
bad headaches when it rains
While the actual articles may be funny to regular readers (or me anyway), it's not going to be the kind of content people are looking for.

Others, though--wow, it's not that kind of blog. Sample google terms:
paramedics naked (we all know what post that linked to, exoricst head spin)
perfect P.E. teacher shoe (no comment)

A few are searching for more info on some music videos, such as the red V on Chris Martin's shirt in "Viva la Vida." Several are links to images of Frida Kahlo, including the profile and the PostSecret images.

And then there's the guy who keeps clicking back directly to the comments section on patient modesty wondering if I've responded to his rant yet. Yes, I have. That's why I'm using sitemeter.

Saturday, August 9, 2008

Hair Cut, Self Remedies, and Medical Humor

Today I got my hair cut supershort because it's all been falling out. That's what it does when I'm in pain. It looks much fuller--like anyone else's--when it's short and very layered. The bald spots definitely don't show. My hair is very curly, so the shorter it is the more springy it is, easier to hide those bald spots. A lot of it had fallen out last fall, but I'd had a lot of new fuzzy growth that had been coming back in and made my hair a little wild--until that fell out again too with the surgery. Hair from pain loss isn't permanent. It can grow back in again.

I always get it cut short when it starts falling out. Why pull down the follicle with more weight? A lot of people don't like it this way, I can tell. They don't know why I make such changes. They don't realize how many decisions are made on the basis of a disability. What if it were because it's easier and it pains me to reach and my husband's no good at styling it? That's why a couple of women I know with disabilities go with shorter hair. Others stay with longer hair because it's part of their style and their individual trademark. I wish others would show some support.

I'm glad that I had a lot of hair to start with. My sister and others say they notice a difference but that people who didn't know me well wouldn't know. And now they definitely won't know.

I don't quite like it being supershort since I can't pull it back but I do like it looking as if I have adequate hair! My husband, who's been looking at the shower drain in horror, said if I lose more I can get a wig. Gack, that would be too hot and expensive.

I feel more confident this way. At times it's been severe enough in spots that I've been terribly embarrassed but mostly been able to hide it.

The arthritis pain after that hurricane-eye respite is back with a venegeance and I'm looking for something--anything--to help with it. I will try cherry juice concentrate and bromelain tablets and see if that cuts the edge off it at all (antiinflammatory effect), or I may go to the big gun pharmaceuticals. I've already been eating foods with more sulfur content (that's what's in Celebrex, which I'm allergic to). Can't deal when pain meds don't cut the pain enough. I have arthritis in the base of my left thumb now, and I've not been doing anything to overuse it and my knee and heel and hip and upper spine/shoulder hurt too, and this time it's both SI joints, not just the left one. What is it about late summer that always gives me these flares?

Since humor is the best medicine and I love funny movies and books, I looked for medical humor on Amazon. Other than Patch Adams, most of what I saw was a large imbalance with doctors writing of their experiences with patients. Browsing one of the books made me glad I didn't go to medical school--what horrors med students and doctors have to deal with in the ER! Really, truly trust me on this, don't go looking it up. Ick, ick, ick. I'm not talking run-of-the-mill GI or skin problems. What is okay to share is that one book has several sections on patients with Munchausen's, who had faked diabetes using their spouses' insulin, had implanted the bladder with small river rocks to replicate stones, had deflated their lungs with hypodermics, had injected themselves with bacteria, and had physically assaulted doctors in order to get narcotics. Why, for the love of God, why?? I can't see that anyone could anything out of it and what they do to themselves makes me cringe. Gaaah.

Weirder was the story of the older patient who, when wanting to order a hospital bed, was taken to the hospital and assigned to a bed there against his will and his protests ignored! ("Are there any hospital beds available for Mr. Jones?") I can see how this could happen since I've had something similar happen.

What I couldn't find are any medical humor books from a patient point of view.

Family's back from ice skating, got to go.

Friday, August 8, 2008

Ever Wonder? Waiting Rooms

Did you ever wonder why most doctor's offices, labs, hospital, and radiology waiting rooms leave no space for a wheelchair or scooter? There's often wall-to-wall seating but no room for a significant slice of the population. A patient in a wheelchair? Who'd'a thunk it?

You know what I'm talking about! It's so embarrassing to sit right in front of other people's knees or sideways in the flat middle of the room. Leaving a chair or two pulled out or one sofa sans sofa table leaves room to pull a wheelchair into an open space, or a scooter partway into the space. Only a few places have an extra row of seating in the middle of the room and leave the space next to the end chair "open"; others block it off so you can't sit next to your child or family member.

I can fit myself somewhere, yes, but it's really embarrassing. Or nauseating, when the only space is next to the icky (pediatrician's) trashcan. I notice this happen to others too and feel helpless to help them. In the cardiologist's office, I haven't been taking my scooter if I can park in the closest lot, so I get to see all the other wheelchair users sit in the middle of the room, their backs to other people). (It is "fun" when I have to park across the street because the parking lot attendant can only raise the parking arm for vehicles and my scooter won't fit through the opening when the arm is lowered--I can't step up on the curb and squeeze through as a pedestrian can. Parking gates are a terrible physical barrier for disabled people.)

Worse are chairs bolted to the floor in some places so that I can't get in or around so that people can't help me if they want to.

I am exasperated sometimes by how few places are actually disability accessible. Very few.

My sister said recently she didn't understand some of people's needs until she watched someone unload an electric wheelchair and try to get seated in a building. She understood in theory, but didn't see the practical issues with getting around. She says that the occupational and speech therapy office where she takes a couple of her children is completely disability inaccessible in any way, although there could be ramping to the curb and a paved walkway rather than stepping stones to the back of the building. The front of the building would take extensive remodeling. I mean, do kids who need extensive occupational and speech therapy never need a wheelchair? Or walker? They sure did at the place my son went! I don't understand why this relatively new business didn't plan ahead. She said she's going to ask them about it.

Thursday, August 7, 2008

Harassment from "Anonymous"

In the inbox:
"As a male I don't allow any females
to do ANY kind of personal care to
me. I've had 5 experiences whereby
the nurses (female) were unprofessional. You want people to
feel sorry for you, I won't. Try
going through what you have as a
male patient, then lets see what
you have to say. In my oponion,all
female nurses are pervs!"

What kind of person are you to ever wish the harm or violation of another person? I wouldn't wish that all men had to dress as women and subject themselves multiple times to the now retired suburban gynecologist whom young women refer to as “Lester the Molester” and “the veterinarian,” nor do I wish people to be sexually assaulted in the hospitals during nonprocedural contexts to understand that’s wrong. Nor do I stereotype groups of doctors and health care professionals for the harm that others have to to me or others. You make a sexist comment drawn on a limited sample size. Karma can be a bad thing, and you shouldn’t wish to inflict harm on others. That makes your heart no better than the hearts of those nurses you write of.

No, I don’t want other people to feel sorry for me. I want social change and I want social justice, and nothing irks me more than the pity some people inappropriately express. As I stated in my post, my experiences are representative of what other people experience, indicating that there needs to be change (i.e., it’s not about me, but a big problem that affects many people, thus my warning to parents). I have written many times in this blog that I write of individual experiences to release them and go about my daily life and also to address important disability issues and participate in the disability community. Learning of other people’s similar experiences indicates a need for many changes and it prevents a sense of isolation (again, creating community).

It’s not healthy to self-victimize or to compete for attention. You’re doing what the psychologists call “projection” and actually want people to feel sorry for you and to draw attention to yourself. I said I was sorry about your experiences and that no one should be violated; how you could possibly conceive of this as opposition to you rather than empathy is beyond me. Life isn’t a competition to see who has it worse. It doesn’t matter who has it worse. What’s wrong is wrong. It’s not a competition. I don’t compete in this way.

I don’t take kindly to even the slightest implications that I or anyone else should be harmed in any way. Any further comments in this regard will be taken as a threat and treated accordingly. Couching an attack in anonymity is cowardice. I expect this from the ableds. I expect better from people in the disability community.

PS. The nurses for my last two surgical procedures were male. There were no women present. Don't assume. And you think the abuse of men is worse than the abuse of women? Again, it's not a competition.

Wednesday, August 6, 2008

That was short

Pain's back, respite over.

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.

Sunday, August 3, 2008

Viva la Huh?

Someone explain the new Coldplay song to me, because I don't get it. "Viva La Vida," Coldplay says, comes from the words Frida Kahlo once painted, approximately "Long live life." While the speaker-king may want to live a long life, I'm not sure if that has any relationship to Frida Kahlo.

I watched the official music video for any clues. Were there any? Not really. Just the band standing around playing instruments, with the drummer hitting a bell instead of a drum sometimes, and a red rose or flag behind. The only possibility: on Chris Martin's shirt, there's a red V almost hidden under his jacket and two red bands on his right arm--meant to represent Christ's wounds? There's also a red rose opening at the beginning of the video, and the musicians seem to dissolve into rose petals or blood drops at the end of the video.

Lyrics here.

Apparently the meaning of the song hinges entirely upon who the speaker of the song is, which I cannot for the life of me figure out. Presumably it's not Chris Martin. My questions:
1. Most obviously, did the Roman cavalry have a choir, much less choirs plural? Why would they be singing? Coldplay is British, so they probably grew up visiting the British Museum like all British schoolchildren and would know from an early age lots about the early Romans, having examined Roman relics and filled out worksheets on them during field trips. Or maybe the teachers forgot, while demonstrating different kinds of Roman coins, to talk about the music of the Roman cavalry.
2. "I used to rule the world / Seas would rise when I gave the word" (or is it "seeds" rather than "seas?"):
Who are we talking about? Poseidon? Moses? God?
3. "Now in the morning I sleep alone / Sweep the streets I used to own":
Now the song takes a Blakean twist, Songs of Innocence versus Songs of Experience ("The Chimney Sweep" and its counterpart, thank you Mrs. C.). This little character goes to heaven, having met an early demise. And this doesn't sound much like Poseidon/Moses/God.
4. "I used to roll the dice / Feel the fear in my enemy's eyes / Listen as the crowd would sing: / 'Now the old king is dead! Long live the king!'":
Kenny Rogers and the Gambler? King Arthur? The fisher king myth? Pharaoh is overthrown and Moses is a gambler?
5. "And I discovered that my castles stand / Upon pillars of salt, and pillars of sand":
Pillar of salt, I get--Lot's wife. And the Biblical caveat not to build your house upon the sand. So God or Christ, who are lost to this contemporary world, are the speakers? But how does this explain the street sweeping? Or the relationship to Frida Kahlo.
6. "I hear Jerusalem bells are ringing / Roman cavalry choirs are singing / Be my mirror my sword and shield / My missionaries in a foreign field"
Okay, maybe Christ or the Holy Ghost. But wait!
7. "For some reason I can not explain / I know Saint Peter won't call my name / Never an honest word":
Christ isn't going to be welcomed into Heaven? We've got to go to Kenny Rogers or King Arthur or the fisher king instead, but I can't reconcile cavalry choirs with them.
8. "Shattered windows and the sound of drums / People could not believe what I'd become": ???? Crusades?
9. "Revolutionaries wait / For my head on a silver plate":
Oh, John the Baptist. But did he sweep streets and get the Roman cavalry choirs asinging? And Saint Peter would have snubbed John the Baptist?
10. "Just a puppet on a lonely string / Oh who would ever want to be king?"
I don't think "puppet" would describe Christ, Kenny Rogers, King Arthur, or John the Baptist. God's a puppet? Don't think so. Fictional persona? All the anachronisms still don't make sense. And I maintain that the Roman cavalry did not have choirs.
11. Why is Frida Kahlo invoked? One would have expected something more about this since the band keeps overexplaining this allusion.
12. And the rose? Connected to chivalry and courtly love, the British crown, knighthood, Adonis, the blood of Christ. But not the Chimney Sweep.
13. Maybe this is a past lives issue? Sounds like some of these lives would have to have been simultaneous then. The chimney sweep as king? Weep, weep, weep, can't figure it out.

Is this song supposed to make sense, did the songwriter think about it enough, or is it some kind of language experiment? Maybe I'm missing something very obvious and it will all make sense soon. Comments welcome.