Sleepless

I can’t sleep. And since Jim is out of town, I can be up in the middle of the night and not bother him. I get days like this once in a while, not always for the same reasons. Usually there is something on my mind that I’m trying to think through. Occasionally some body part hurts. Today, I just feel a sense of wanting to GET STUFF DONE!

So, it’s 3:30 AM and I can hear my new bamboo wind chime bird out front clicking away. The house is quiet, and peaceful, and the cats are a bit confused to have me up. I have a load of wash in the dryer. I’ve just done some online research on home insulation, and I’ve tried to figure out which framers I’m going to call tomorrow for their ideas about how to frame some tiles we got from Uruguay. I made a short grocery list for tomorrow, and I’m thinking of paying some bills. I may pay for this busy night tomorrow, but I won’t mind. It’ll feel good to have accomplished some of this work. And I’ll get some sleep, so I won’t be a total wreck.

I’m not manic, or even feeling particularly energetic. I’m just tired of feeling like my TO DO list is never done. A few years ago, not long after Jim and I got married, and after both my kids were away in college, my mother asked me what I did all day. It kind of surprised me – she’s been retired for years, what does she do all day? She probably doesn’t remember asking me this, and I don’t remember the context of the question either. Perhaps it was just a curiosity question, and my memory has distorted what was said. But, all the same, I have thought about it every so often since, “what do I do all day?”

And yet, this week feels like it’s been busier than usual, and when Jim’s away, that’s not typical. I did take it easy on Monday, recovering from houseguests, I guess.

Anyway, yesterday (Wednesday) I saw the hand surgeon, and her assessment is that it’s not the right time for me to have surgery. I like this doctor a lot (Julie Ohayon) and if and when I do have surgery, she’ll be the one to do it. She explained that the time to have surgery is when you are feeling real discomfort or pain. That’s not where I am right now. I get twinges and twangs of pain from time to time, but most of the time I am pain free. I guess some of the changes I’ve made – new way to transfer, wearing the brace when I have a lot of pushing to do – and my attempts to be more aware of when I stress my wrist, have paid off.

She poked me right on my most painful spot, and today there was nothing there. Like the other surgeon I saw, she also says that after surgery there will be nothing I can do that will hurt me more during recovery, and that I should heal just fine without limiting my activity. She has people wear a small brace more for their comfort than because it is needed. And once the surgery is done, the tendonitis cannot come back. The band that gets cut expands when it heals. It sounds like there are no negative side effects or risks. I didn’t exactly ask what all the things that could happen if it all goes wrong, maybe next time.

I’m a good candidate for the surgery apparently. No osteoarthritis or rheumatoid arthritis. The cortisone worked well, which means that it’s only tendonitis in one spot. And the cortisone doesn’t seem to have harmed me any either, not much loss of fatty tissue or strength.

For now, I’ll continue using the topical anti-inflammatory when I feel pain. But if full DeQuervain’s tendonitis comes back, no pussy-footing around then. I’m just going to do the surgery and be done with it.

The other disability thing that happened today was more about my losing (hopefully just misplacing!) something than about my disability. One of my arm pads cracked, making my chair arm rather uncomfortable. It cracked the full length of the arm, on the bottom, so that leaning on the armrest caused my arm to slide off and down. Luckily I had a spare, so I didn’t have to wait till I got to a repair shop to pick one up. But I couldn’t find my collection of “Wheelchair Emergency” Allen wrenches. The last time I had it was on our vacation, for it goes with me when I travel. I must have spent an hour searching for it everywhere, and I hate feeling disorganized. Perhaps it’ll turn up somewhere. I managed to swap out the broken arm for the new one, using another set of wrenches we had in our tool drawer, so my chair is fine. But where did my special set go?

I got a few curious emails today. The first was from a woman who had arranged for a group of people with wheelchairs to have some specially set aside seating at an event. I gather people using wheelchairs have attended this event before and found seating awkward. This special seating happens to be near a rear exit door, which is close to the back parking lot. Her email strung together the words “designated seating”, “back of the room” and “exit”. Someone else in the email group reacted rather badly, and is ready to have his ADA lawyer attend the event to see if there’s an equal rights violation. I admit my first reaction to her wording, was to be offended. But I do believe the event coordinator is trying to satisfy a need, not segregate, so she means well. I doubt though that her solution is legal. And it makes me feel sorry I’ll miss this meeting and the fireworks. It’s been a while since I saw disability rights advocates at work. There were a couple more emails with comments beyond that, and not everyone sees the subject the same way. I suggested to her (privately) that she use Bcc in future for her group emails.

It’s now about 4:30, and my laundry is done. The bills will wait another day, or two. I think I should go to bed for a few hours, so I have some sleep before I need to be up at 9. Goodnight all.

Progress

Despite being out of the house from 10 – 2, I managed today to talk to several people regarding ordering a wheelchair. I talked to Liz, the scheduler, and Nancy, the PT over at Sharp Rehab. I also talked to Vann at Mobility Solutions. And the end result is that on Friday I have an appointment with Vann to see if we can hammer out exactly what I want to order, and do the measurements necessary, and to also see if we can come up with wording for a letter of medical necessity and prescription. Hopefully Vann will have enough info or the right documents to look like a prescription, and I surely can manufacture a convincing letter for my doctor to sign. If we get stuck and need some supporting wording, Nancy will be happy to write up an addendum. So, if all goes well, I should have the proposed order form, and supporting documents to my insurance company by the middle of next week! Then we have more waiting.

Adding up the time spent on this – it was about 2 hours total, though it was 10 min here, 20 there, with the first conversation at 8:30 AM and the last one around 4:30 PM.

3 other disability related activities today.

1. Saw my PT today, for my neck, which has generally been doing well for some time now. So, we decided I should take a break for a bit, and my next appointment is in a month. My PT says I’m doing well, I feel good, and so I guess the home stretches I do are working. I like going in to see her, and always feel better after she’s worked on my neck. But with only so many sessions paid for in a year by insurance, I think it’s smart of me to not use them all now when I’m doing well. My guess is that when I finally get a new chair I’ll be needing more help then.

2. I stopped by the Ability Center for some service on my chair topper (the machine on top of my car that picks up my chair and stores it). In the past few years I have heard a lot of stories about slipshod service there, and I admit I haven’t seen their best. But today, I went in without an appointment, and they took care of my problem for free, so I have to give them credit. 2 weeks ago when I went to the car wash, I parked my car between the pillars, paying attention to where I was so that the front car door could swing open all the way, and I could get out. What I didn’t pay attention to was where the chair topper would be as it opened. So, when it extended all the way, oops, it bumped one of their vacuum cleaner pillars. It seemed to work fine these past 2 weeks, so I didn’t worry about it. Today, coming back from PT, I noticed that the plastic housing of the whole thing was cracked. And I watched it operate more carefully and realized that one part was not straightening out all the way. So, even though it was doing the job I needed, I thought it should be looked at. When I stopped at the Ability Center I told them that I really only wanted a quick check today, to be sure it was safe, and that I’d come back another day with an appointment if needed. But they straightened out the part that needed it, and pushed the plastic so the crack isn’t large, securing it on the back. Granted it was only 10 -15 minutes, and duct tape, but I expected them to charge me anyway. I appreciate their assistance, and do feel reassured I didn’t create any serious damage.

3. Jim is away, so again I’ve got a cat helper. This time though, a 12 year old neighborhood girl is helping to catch Jasper so I can pill him. Jasper doesn’t exactly like getting pills, but he isn’t freaked out about it anymore either. The whole procedure takes about 5 minutes, and this is a much easier level of accepting help for me! Why can’t they make cat medicine in cat flavors!

4. Total time spent on disability today – (wheelchair order, PT, Ability Center and transportation) about 4 hours. Tomorrow, finally I see the hand specialist, a day to focus on my wrist.

Let's Get this Show on the Road!

How long should it take to get an appointment with a physical therapist about getting a new wheelchair? Seems to me like one day to wait for a call back (if at all) is more than enough, and anything longer than that is too long.

Let’s see – on Mon 4/12 I emailed my Rehab doc office for the phone number of the Sharp Rehab PT dept to call for an appt or if that was not possible, to get them to call PT directly and have PT call me.

4/14 I had a doc appt, and asked whether they got my email, which they did and had contacted PT, who was to call me.

I waited a week, from past experience it usually took that long for a call back from PT, which is why I had hoped to get the number to call them directly in the first place.

OK, Wed 4/21 I emailed the doc office again, saying I hadn’t heard from PT yet. I got a quick reply that PT would call me right away, and also this time I got the name of the person who would call and her phone number. Now, why couldn’t I have that a week earlier?

Friday 4/23 11:30 AM Liz at Sharp PT calls me, while we’re out at the zoo. – That’s 11 days for a call back.

Monday, today I call her back, about the same time 11:30, knowing I’ll be home all afternoon when she calls me back. But she didn’t reply. I called 3 times, left messages. Perhaps she was off today? Nothing in her answering message to that effect, just a direction of where to call if it was an emergency. The second time I called it went directly to voice mail, what it usually does when someone is one the phone.

But I ask you – what kind of scheduling office never has someone answer the phone, or doesn’t make a provision for what happens when someone is out on vacation? I can’t imagine calling my GYN or dentist’s offices and waiting over 14 days to get an appointment. They might not answer immediately, but they’d call back in a day. If on vacation there would be a recording saying as much, and when to call back. My regular PT (Innovative PT) office has a receptionist who answers 9 times out of 10, and calls back within an hour if she’s away from her desk.

So, what happens tomorrow? I won’t be home from 10:10 till 3 or so. I may break a cardinal rule and leave her my cell number. But I’m also looking into ways to order this chair bypassing Sharp’s PT dept. I emailed the rep from the medical supply store today too, no reply yet. I’ll try calling him tomorrow if he doesn’t reply by email.

I do think patients with disabilities are sometimes treated worst by the hospital system. It’s as if they think you have nothing better to do than to wait by the phone. They see you as having all the time in the world, no reason to hurry. I pity the person ordering a wheelchair who needs a new one yesterday.

The crazy thing is that the reason this is all taking so long is because I have insurance. If I didn’t, I’d have ordered this chair on Monday 4/12, right after the Expo. There are plenty of ways to order a chair online, at a lower price to boot. But since I have insurance, I have to go through a supplier willing to bill insurance, and I have to get a doctor’s prescription – which is why I’ve been bothering with the Sharp system in the first place. Supposedly that’s the proper way to approach this. I do wonder if it’s possible to order the chair with the supplier’s assistance, and get their advice on the prescription wording, and then go directly to the doctor’s office for a signature. The PT serves 2 functions, assuming I understand this right – they make the measurements (which shouldn’t be hard given that I have a chair that fits already) and they submit the papers to the doc office for the prescription. There’s a 3rd function too, seat mapping – which means using a machine to measure how pressure is distributed under you as you sit and comparing cushions to see which gives the best pressure relief. But I’m not ready for that one. I want the new chair first.

I read about another machine recently too – The SmartWheel. It attaches to the wheel of your chair and supposedly helps you see the best way to position the wheels relative to the seat (you can adjust height and forward/back position a few inches each way) to see which is better for your wrists and shoulders. Sounds like a great idea. I don’t know yet if Sharp has one of these gadgets, though I believe the VA has one. That sounds like exactly what I need!

I’m guessing Sharp doesn’t have one of those machines though, for I think they would have mentioned it. But I’m not ready for it yet anyway. I want my new chair first. I’ll cross that bridge later, at the same time as the seat mapping.

This chair is going to cost $4000 - $6000. Imagine a used car salesman, not calling you back for 2 weeks when he knew you were interested in one of his cars. Or an appliance salesperson. It wouldn’t happen! So, how is it medical supply people get away with it?! Very annoying.

I know this is boring stuff, but at times this annoying boring tedious activity is part of a person with a disability’s life. There is so much waiting – for the medical bureaucracy to work it’s way, for test results, for things to be made, things to arrive, and sometimes for things to heal. And I’m not a good enough writer to convey the tediousness without being tedious. So, if you are not a PWD, be glad you are just reading about a tedious process, and not living it. I don’t want pity, just understanding – and more than anything I’d like the medical system to change!

Parenting

Spending this past week with my sister and my niece has reminded me of how demanding being a parent of a young child can be. I am glad I am through those years, I don’t have the energy for a young child 24/7 anymore – though perhaps Lizzie was more demanding than average. Still, when you become a parent you have to be willing to bring up whatever child you are given. You don’t get to say, “I want a child, but only a sweet intelligent and lively little girl!” So, I believe it’s an activity better taken on by people closer to 25 than 50! However, I don’t for a minute regret having kids.

David is 25, Stephen is 23, and both are very grown up and independent. David is working, owns a house and a dog, lives with his girlfriend. Stephen is still a grad student, but financially on his own. I see them less than I’d like to of course, but at least now I like to think they see me because they want to, not because they are required. Stephen didn’t have to come down last weekend, and the fact that he did consequently has more meaning as a result.

The women I know who have disabilities and have grown-up children, seem to have good relationships with those children. They all appear to have become responsible adults, well enough adjusted, with the same range of problems and difficulties as those with non-disabled parents. I don’t know what these young adults have gained or lost overall, there’s no way to know what they would have been like if their mom could play soccer with them, or hike in the mountains with them. I suspect that at the time, they might have had some complaints, but now they would say they weren’t an issue anymore.

Like all children everywhere, they grow up to love their parents as they are. When children are really little they have no concept of their parents as being flawed, but just of being there. The realization of the limitations of their disabled parent comes in later, when there is a growing awareness of other kids and their families. My first husband, the boys’ father, is not white. Ranjan comes from Sri Lanka, a small country near the tip of India, and his skin is a dark brown. For all I know their first awareness of difference with friends was more connected to being of mixed race than of being the child of a person with a disability. I should ask them sometime what age they were when they first saw me as different, and also how old they were when they realized it didn’t matter, or if they ever had those thoughts consciously at all.

I believe the biggest challenge for a PWD who wants to be a parent, is not the parenting itself, but a lack of confidence. Before David was born, I remember worrying about not being able to pick my kid up, to get him to come when I called or that he would run from me, to give him a bath. What you forget is that you are not alone. Even single parents need not be alone. You make yourself resourceful, and find ways around challenges.

I could make a long list of tasks I had a hard time with, and then how we coped with them. Hard for me to get out of the car? – so I found preschools where I could drop my child off without my having to get out of the car, where the staff would check them in at the curb for me. Trouble with wheeling over sand, and into playgrounds? - I found playgroups where other parents were willing to retrieve my child off the top of a jungle gym, or out of a sandbox when he had scraped his shin. Worried about them running off? - I carried my kids on my lap till they were 3 or 4, belted in so they couldn’t fall off, and then later used a leash till they were about 5. I found a narrow beach with a flat cement sidewalk near the beach for me to sit while they played in the sand. I could see them at all times, and there was a lifeguard. Oshkosh overalls are great for picking up toddlers by the back of their pants. A totally baby-proofed house means that the house is effectively a giant playpen, and then you don’t have to chase after a child to keep them safe and out of harm’s way. Ranjan had bath duty.

It’s possible that having a parent with a disability may have given my children some benefits as well. They had to tolerate my taking longer to do some things, learning patience. They have a greater sense of architectural barriers than the average person because there were times that they couldn’t go somewhere because of a lack of parking. And they learned to be more self-sufficient younger, when mom couldn’t get into the bathrooms with them.

It was not always easy. I remember one time I was going to a dermatologist, and the accessible entrance door was locked. I believe David was about 7 or 8 and he was with me that day, and I wanted him to go in the main entrance, say his mom used a wheelchair and the door was locked and come back out. This was before cell phones, for now I’d just call the office and tell them myself! But then, he fussed so, and I never did know what worried him, but he got himself over it and went in on his own and survived it.

Or from the other side, it wasn’t always easy for me. If there wasn’t parking I could use, and I wanted milk - I’d head to a 7-Eleven so that I could park where I could see the cashier, and then let Stephen run in to get the milk – hoping there would be no mishaps, and that he could handle the money ok. It seemed to me that a child who had difficulty getting a heavy door to the convenience store open must not be old enough to make a purchase there, but then we’d not have milk that night either. And except for my anxiety about letting him out of my reach, it really was a task he could do.

My kids learned to do their own laundry and to pump gas younger than their peers, but I don’t think any of these kinds of tasks were asked of them before they were capable of handling them.

Overall, I believe most anyone with a disability can be a good parent if they want to. You may need to be a little more resourceful to find solutions to problems, and may need to rely on others for assistance. But if you show your child love, and are there when they need support, and show them that you are not limiting their own activities because of your limitations, they will thrive. Just because someone can walk, doesn’t meant they will play soccer, and a child interested in soccer most likely needs a team and a coach more than an adult playmate.

I loved being a mom of school age children, all those years from about 4 – 12. Not that I didn’t like the other years also (still like being a mom of adult children!), but those middle years were so much fun. So much curiosity and energy, and trust in the world. I’m looking forward to grandkids one day, not too soon, but I hope I do get a chance to watch my kids have kids.

pillow

I think, maybe, possibly, tentatively, and hopefully, I have found a pillow that will help me keep the vertigo at bay! (Is that cautious enough praise?) I bought it from Brookstone a week ago, and so far not an inkling there will be any trouble with vertigo. Woohoo!

For several years I’d been using tempurpedic neck pillows, the type that have a dip in them so there’s support under your neck. I have always found them to be very comfortable. But I’ve been having problems with cervical vertigo on and off for two years now. This means that one of the blood vessels that goes up the back of my neck (for me, the one on the left side) was getting pinched, and cutting the blood supply, making me have vertigo especially in the morning. Apparently I’m not at any real risk from this, but it’s very annoying all the same.

This is why I’ve gone to so much PT the past 2 years. My therapist stretches my neck out, in ways it’s impossible to stretch myself, and calms those muscles down. I’ve been working on my posture, so that I don’t tip my chin up so much. I’ve done what stretching I can do at home daily. And now, I only get vertigo rarely, but every now and then it does come back. Or in the morning I’ll get a wee bit of dizziness, especially if I sleep on my left side, a reminder that full vertigo is not impossible still.

I know others who have improved their posture by getting their spine fused, or by wearing a corset or brace. I am simply not interested in either. I’d have to be desperate for surgery, and my body shape doesn’t hold a corset well – too much hip and a sitting position all day, makes a corset ride up almost immediately and is very uncomfortable. So, in the end it defeats the purpose.

Not long ago I realized that sleeping on the tempurpedic pillow made me tip my head back just a bit. So I flipped the pillow around, so the fatter end was at the head of the bed pushing my head forward instead, which seemed to help. But it made me realize I should just find another pillow.

I tried Jim’s regular shaped tempurpedic pillow, but found it too hard. I bought some softer pillows but felt like I was sinking, and they were too flat. (I sound like Goldilocks.) The one I just bought from Brookstone is an interesting combination. In the middle is a foam rectangle, made similar to a tempurpedic pillow. Then it’s covered with about a two-inch thick synthetic down pillow. The outer pillowy part is machine washable, and has a soft cover that feels good on your cheek. I might put a pillowcase over it though, just to keep from washing the outer pillow too frequently. Being washable is not the same thing as holding up well with frequent washings.

Before anyone thinks Brookstone is paying me for this advertisement, I will add that this pillow isn’t as comfortable as I would wish. I’m hoping I’ll grow more fond of it, as I get used to the shape, assuming the vertigo is really gone. I am hopeful on this, because from the get-go I’ve been able to sleep on my left with no problems.

There’s one other problem with the pillow though. For some reason I think it’s making me sweat. This past week I’ve had more nights when I’ve woken up sweaty around my neck and upper arms. I know my tempurpedic mattress can make me sweaty if I have too many covers on. They do capture warmth and hold it. I could understand that a foam pillow might do this also, even though the other tempurpedic pillows I’ve had didn’t. I can’t say I like the feeling of waking up wet, but I have wondered if maybe being warm is part of what is helping my neck? I’ll put up with some sweatiness if it were to mean no more vertigo. Oh it’s so wonderful to sleep in, wake up when you want to, and feel rested and ready to go! Ok, I’ve not been doing too much of the sleep in with no alarm clock, but it is nice to wake up and not first find yourself wondering if you’ll be dizzy.

Problem – cervical vertigo

Cause – posture and head positioning, caused mostly from full time sitting

Short term management – physical therapy, stretches, heat

Long term solutions – NEW wheelchair, new pillow and probably a lifetime of stretches and periodic PT touchups

clothing

This week I’ve given Johanna several items of my clothing. I didn’t keep track, but I can recall at least 5 short sleeve shirts, 3 long sleeve shirts, 2 pairs of pants and 1 jacket, including one shirt I bought for myself as a birthday gift 2 years ago but have only worn once. In fact, most of the clothing I’ve only worn once or twice. 2 of the items were in the purple family, not my color. 3 were very neutral colors, and I like to wear brighter colors these days, but the rest were because they just didn’t fit well.

I find buying clothes hard. When you sit all the time, you want shirts longer in the back so that they cover, but not so long in the front that they bunch up. Pants need to be full in the seat because otherwise they pinch at the waist, and also full in the leg to be able to get them on. I buy talls so that there is enough rise through the butt, and so that the leg is long enough to touch my shoes, but often that means too much fabric in front.

As I’ve gotten older, and fuller through the middle, this problem has gotten worse. I remember years ago, someone referring to the para-quad belly, and I stupidly was pleased that wasn’t me! That was before kids and middle age took its toll. Having babies stretched my stomach in a way that a para cannot exercised away. And I have gained weight over the years steadily, but surely.

There’s also the problem of posture. Not sitting up straight makes your stomach pooch out even more. So, snug clothing is not attractive. I hope to help this with a new wheelchair, but it won’t fix the posture problem entirely.

Anyone who is curious, next time you go clothes shopping and try something on – look at yourself while standing, then sit down and decide if you like it. The clothes will not fit the same.

Johanna and I agree that if I weren’t sitting all the time and didn’t have other complications that being a para means, we’d probably be the exact same size and shape. She’s an inch taller, I’m 5 pounds heavier (and 5 years older, so that makes sense). Even now, our bodies are so close in size it’s amazing. We can wear each other’s bras. Where we differ is in pant size, where I’m one size larger. And we differ especially in HOW things fit. So, a lot of my “hand-me-down” clothes are really failed fashion attempts.

The one that hurts the most to give away, is the birthday item I treated myself to. It is an olive , black and brown (think cammoflage) blouse with a low round neckline, gathered around the neck and sleeves, with a band around the hips. It’s a slinky feeling, sexy thing – well, as sexy as I get! On Johanna it sits nicely, not so low it shows cleavage, but gives a good shape. On me, the back rides up, which makes the front hang too low, and I’m fighting to keep my bra covered (got no cleavage), and feeling like I’m a board from neck to bra. Well, I am very small breasted, so perhaps I am a board! But this blouse made me feel totally flat-chested. I tried wearing clips to hold the shirt to the bra at the right level, and all I ended up with was raw red spots where the clips kept rubbing. The shirt has sat in my drawer for a year. I liked it enough to buy it – I wanted it to fit!

I could give these failures to charity, but prefer to give them to my sister and imagine how they might look on me. It’s a weird way to behave perhaps, maybe even a bit painful. Johanna is happy to get the stuff – it’s generally in great shape, and the price is right, and it fits! If she doesn’t like something, she gives it back. I’m not offended.

Once I tried clothing specifically made for people who use wheelchairs. The pants are cut low in front, full in back, long in leg. You have to measure yourself in a different way. Unfortunately the selection was limited, and the fit was less than ideal. The front fit, but it lacked the creases that most people have when sitting, so it looked odd. Perhaps I should try this again one day.

Recently I saw an article in the paper about 2 women starting a company that advises women on fashion. The basic principle of what looks good depends on the horizontal lines of neckline, shirt hemline, jacket length, sleeve length, and pant hem. Their before and after pictures are impressive. They do some other alterations to clothing too, like taking in full pant legs and waists, but overall I’d agree that their methods work. Check them out at www.thefashioncode.com. But what if you are sitting? I’m tempted to email them and ask. There are some other problems with their approach too – they care little for comfort or practical concerns. For example they advocate for pointy shoes, and like to cut jacket sleeves a few inches above the wrist, which is totally annoying and cold.

I find shopping for clothes tiresome, pants especially. I’ll buy pants from catalogs where I can request At-Waist waistbands, and 34” inseam, and a full leg. I’ll continue to experiment with shirts but fall back on longer T-style shirts with something decorative.

Today, I bought myself a beautiful, salmon colored scarf from India, with tiny little mirrors on it. Scarves are one size fits all, and go with all kinds of shirts. I have a drawer full of them.

I was called Grandma today

We were at Seaport Village, (Johanna, Lizzie and me) and shopping in a soap shop. Lizzie had already had a long, though good, day and was ready to shop in the Safari shop – for her afternoon reward. But first we were browsing in the shops Johanna and I wanted to go into, (because you know as soon as you get that present a certain someone will be ready to leave!) and at the moment it was a soap shop. Consequently, Lizzie was bored, and playing with the bath toys, perhaps a bit too roughly. And consequently, Johanna was snapping at her just a little to get her to behave. I don’t remember what I said, or exactly what the shopkeeper said – but I do remember that she prefixed her statement with “Grandma, …..” and she was clearly talking to me!!

I do believe this was the first time anyone ever called me Grandma, and as much as I would love to be a grandma one day, this was not the right day to hear it! Me? Be my sister’s mother? Sure I could be Lizzie’s Grandma, I’m old enough for that, but Johanna’s mother? Humph.

It helped that the woman in the shop was old enough to be a grandma herself, so it wasn’t some young kid’s assessment of old age – or does that make it worse, not better? And she knew Jo was from out of town, and I was local, so the chances were high we were family. And I look older, am older! She made a quick judgment, correctly, that Johanna was Lizzie’s mom. Where she messed up was in my relationship to that pair. And I had a hat on, she couldn’t see me well – that makes a difference, right? Did the wheelchair make a difference too?

Johanna and I have been laughing about this all evening. I didn’t realize she heard the woman’s comment till we got home later, when she called me “Grandma” with a smirk. I was kind of hoping she hadn’t heard the comment! Eh, I’ll get her back one day.

We took the amphibious SEAL tour from Seaport Village. I had no idea it was wheelchair accessible till the Expo, where I saw an ad for it in the Access San Diego magazine. I suppose it makes sense though, the ADA would require it I guess. It was a decent ride – half an hour to drive to and from Seaport Village and the boat dock past the airport, and an hour on the water. The blue whale that has visited our bay for 2 days didn’t show though. Oh well. We saw sea lions and got a good sense of how much military land there is around the bay. It was a pleasant way to spend the afternoon. So, I would recommend it. If you have a wheelchair though, call the day before to set it up, to be sure one of the accessible vehicles is there at the time you want to ride.

Catch up

I am truly happy right now, with my sister in town. I'm busy, and now a bit tired, but I don't mind. Her daughter is a handful - just a bundle of non-stop energy and chatter (till she finally crashes around 9 PM) - but she's a good kid. I'm enjoying being able to cook for my sis. And I've done more laughing in the past 3 days than in months before. I don't want to do chores or exercises, or really even write - I want to be with my sister! And it was even better with Stephen here over the weekend, since I feel I never see him enough.

I'm not feeling the same frustration that I felt when Jim's mother was here. Then I felt like I didn't have enough time to write, and that my writing was a low priority that I had to change. At the moment I almost could say I don't care if I write at all this week! I do know she won't be here much longer, and the keyboard will be here after she is gone. But I knew that with Phyllis here too.

So, I have to concede that there is a fundamental difference between the 2 visits, for me. I imagine that Jim would have a slightly different spin on this. He spent more free time with his mom, than he's doing with Johanna - but I suspect he'd say that Jo and Lizzie's visit is harder work for him. His emotional attachment, naturally, is stronger to his mother. Mine is to my sister. Makes sense.

But where does that place my writing? What about my attempt to write daily? I did skip one day. Is it better to write something, no matter how simple, or better to skip more days and write something more thought through? I don't know.

Some things that have occurred to me recently that would be good blog post topics:
2 elevators and a back entrance to get into George's terrace for a lunch today. I love that restaurant, but wish they would upgrade the building.

seating in places with fixed seats is often a problem, and I think the San Diego Civic Theater and SD Opera are breaking the ADA with their seat offerings. We've put up with lousy seats for a few years now, but they just redid their price categories, and this has made it even more obviously unequal. For the first time since the law was passed in 1990 I am seriously considering filing a complaint with the Dept of Justice - not a law suit, or anything for financial gain, just something to force them to comply. On the other hand, Petco park seating is great, and we've got tickets for Memorial Day. I'm not much of a baseball fan, but enjoy going once in a while, especially if there are fireworks.

pet peeves - handicapped parking, don't get me started!

I think that right now is the absolutely best time of year here in San Diego. Many days are perfect - 68 - 70 degrees, cool in the morning, sunny with a slight breeze in the afternoon. Days are a little longer, and if it rains it's only at night! Flowers are blooming - roses, orchids, bougainvillea, pittosporum, lantana, citrus trees, and all the weeds on the hillsides. I even have a Christmas cactus blooming! With weather like this, why go somewhere for a vacation? We're in the most perfect place on earth! And yet, we signed up this week for an October 2011 cruise to Greece and Turkey, round trip out of Rome. Luckily it's far enough away, I don't really have to do anything for a while yet. This does seem to be the way we are - just finished one vacation, and then we start planning another. And of course, it'll be another complicated one, another adventure.

Lastly, the Hillcrest farmer's market was much larger and varied than I expected. Why did it take me so long to go there? I'll be going back sometime just with Jim, so I can linger. For now, my fridge is full of all kinds of wonderful things to eat.

a good weekend

Having a good time and happy. My sister, Johanna, and her daughter, Lizzie, arrived yesterday for a week. Stephen came down from Berkeley for the weekend, and David and Amy were here for dinner today.

It's been a while since I was around an 8 year old, and I'm getting a refresher course on how demanding being with a child all day can be. Lizzie is more talkative and active than the average child, but all the same, I'm glad I'm not a parent of a young child now. My kids were a little calmer, but it was still full time work. And I don't think I could do it well at this point. Grandkids might be nice one day though!

We walked around La Jolla, and saw the seals yesterday. Today was my first time at the Hillcrest Farmer's Market, which I definitely will go back to again. Tomorrow Jo and Lizzie go to Sea World, so I have most of the day to myself.

I'm just posting this today, to try to put something in every day. I don't have the energy to put a lot of thought into what I'm writing - other than to just say it's been a good weekend, with my favorite family all here.

a busy day

I don't know if I can do this. I really want to post something every day. I want to WRITE every day! But it isn't so easy.

I got up this morning with a great idea, something that was bugging me - comments about seating, especially at the San Diego Civic Theater where we've been going to see the San Diego Opera.

But here it is, almost midnight and I haven't gotten anything written down. And it's a bathroom night (bowel program night) and I just don't have it in me to spend time writing now, when I know I'll be up at least another hour and a half afterwards.

I could say it's because I have house guests coming tomorrow, my sister and niece - who I haven't seen in 3 years. I am so happy to be seeing them again. So, there were things I wanted to do to get ready.

But, if I allow distractions to totally dis-rail me, well, am I committed? There seems to be a non-stop set of distractions!

I guess this next week will tell, huh? For today, I'm feeling a bit like a failure - failing to manage my time well, which is something I generally pride myself on.

The wheelchair I want

Every day I get closer and closer to knowing what wheelchair I want to order. Except for one feature that I still have no idea whether I want or not, the Expo helped me narrow down my list considerably.

One thing at the Expo, that I found really curious, was how time changes a company. Around 1980 the standard wheelchair was made by Everest & Jennings. It was a stainless steel chair, a heavy thing with a shiny silver chrome frame, and which was introduced about 50 years earlier. You could get several colors of upholstery, and a smattering of features – like removable arms and footrests. Maybe you could get different sizes and seat back heights, but I don’t remember. They were good solid chairs, as long as you didn’t let them rust.

And then around 1983 in comes Quickie, a revolutionary company, coming out with totally new wheelchairs, painted in bright colors, and lighter weight streamlined frames! It was exciting and fashionable (if that word can ever really apply to a wheelchair) and designed by someone with a disability. And it wasn’t long before they dominated the market.

Today though, as I could see at the Expo, it seems like Quickie (since bought by Sunrise Medical and I believe bought again by Southwest Medical but I’m not sure of that relationship exactly) has become more like E&J of 1980 – not in design, but rather in an attitude. It’s now the industry standard that all other chairs have to match or surpass, it catches a huge amount of the market still, and it seems a bit clunky.

There were quite a few chair manufacturers represented at the Expo, many I’d never heard of. Two companies though caught your eye more than others – Ti-Lite and Colours. The Ti-Lite booth was one of first you came to, with a large open space, and a lot of reps there. It was an inviting booth, with space you could move in and out of, several chairs to look over, and displays with color and motion. The people were friendly and the chairs look elegant (well, for a wheelchair that is).

The Quickie booth, by contrast, was out of the way, cramped with too many chairs and too few sales reps. As far as I could tell, there were only 2 reps there, and the woman I talked to didn’t know the answers to my questions without looking up information in a 3 ring binder. She struck me like a rep selling medical equipment, when the Ti-Lite rep was selling sports equipment.

The most fun wheelchairs there though, were the Colours chairs. I would hazard a guess that they were designed by motorcycle riders or hard rock musicians or x-game athletes who have crashed and broken their necks. Seriously, they name their chairs things like Spazz and Boing! And Xtreme. They have shiny chrome coloring on the wheels (made of aluminum now not stainless steel) where the spokes are in the shape of squiggles that create a strobe kind of effect when the wheel spins, or playboy bunnies “spokes” that look like the logo that hangs off of pickup truck mud flaps. The upholstery comes in all kinds of patterns and colors. These are wheelchairs with attitude! But unfortunately for me, they don’t have any with a folding frame, yet. Supposedly one will be introduced late this year, but I don’t want to wait or to get one of the first models out. Maybe next chair. I do have to say that I found them appealing, not to get playboy bunnies, but they were fun, and there were a lot of ways to be creative with them.

So, as soon as I can get the order in, I’m ordering a Ti-Lite titanium chair, but it isn’t likely to be for some time yet, the way things are going.

Monday 4/12/10 – the first business day after the Expo – I emailed the office assistant for my rehab doc to ask if she knew the phone number to call the Sharp PT directly to schedule my next appointment. I need another appointment with the PT for measurements. The med supply company rep will be there too and hopefully at that time we’ll get the form filled out.

Wednesday 4/14/10 - I had an appointment with my rehab doc, so I stopped by the desk of the office assistant to see if she got my email. Yes, and she was checking on it with HER assistant - and then – they had sent the referral to the PT dept, who will call me back. So, I’m waiting for a call back, again. This seems to be the way Sharp’s PT appointment service works. I half expect them to call me back to verify insurance first, and then have me wait another week for another call back for the appointment – at which point they will just schedule me and then tell me the time they picked, without checking to see if it’s ok with me. I’m getting ahead of myself here; maybe they will surprise me. I’ve wondered - if they knew I was writing this blog, would they treat me better?

When I have that appointment, I plan to be ready! No more appointments needed after that, no more decisions!

Ti-Lite 2GX folding, swing away chair
Color – salsa red
18 x 18 seat, long frame, high back, seat 18” off ground
0 camber, center of gravity all the way back
80 degree angle footrests
stainless quick release
SPOX wheels, color black
Natural fit rims, standard size
Extra high pressure tires, can’t remember manufacturer name
Upholstery standard type, color black
Adjustable arm rests with transfer loop
Calf strap for legs, no heel loops
Fold down push handles
4” x 1 1/2” solid front wheels, black with black anodized casters, red tires if I can get them
frog legs
extra set of hard tires (not pneumatic), with cheap spokes, for travel

I only have 2 things yet to decide –
1) Do I want the folding angle-adjustable seat back? I don’t really need the angle-adjustable feature, but the folding aspect of it will make it easier to load into the trunk of a car when traveling. This feature will add half a pound.
2) What type of locks will I order? At the Expo I saw these really cool locks called D’s locks – cost about $450, and that’s what I really want, but I’m not sure if I can get them. They’d have to be put on after the chair arrives I think. I could order standard push brakes with the chair, which are no added cost. Or get ones I like better, uni-locks, for an extra $135. But getting no locks doesn’t take money off the price. Uni-locks bought after market are at around $300, so it’s like getting them for half off if I order them with the chair, but are they what I really want? No, they are second choice. D’s locks should work with any set of tires, whereas all other locks have to be redone if new tires are put on, and get less effective when tires are bald.

Sounds complicated, right? It feels that way to me. And I probably have half a dozen things wrong – that if I get X I can’t get Y. That’s what will happen at that next appointment. Seems to me though, that this is a good start, and I’m as ready as I’m going to be.

How much time does my disability take?

It was an absolutely beautiful day today, and it felt so good to be out and about in the warm sunshine! I got a lot of my TO DO list done, though (of course) not all of it. So, what’s not done will carry over to tomorrow. And despite my best intentions and cutting stuff off the list, I was too busy and I overdid it. My wrist is feeling sore, not acute pain, just sore.

I’ve never actually tried to calculate how much time my disability takes from me. The scientist in me does protest! There is no control here!! You need to get 100 people with disabilities, match them for age, gender, and general health with 100 people who technically don’t have disabilities. And even that wouldn’t be easy to call a fair control. If I hadn’t a disability, perhaps I might have had some sports injury from biking or running, and then I’d have as much time in PT or doctors’ offices for different reasons …

All the same, I can tally up how much time my disability took from me today, imagining my otherwise non-disabled and totally healthy self.

Using today as a typical day:

1 hour for a shower and dressing – I don’t blow dry my hair or use makeup. I believe my AB self could take a shower and dress in 30 min. So, 30 min extra.

Stretches 45 min – wouldn’t do these at all if I were AB!! At least not daily. Let’s use Jim’s exercise plan of 1 hr every other day, average 30 min daily. So that’s 15 min extra today.

3 destinations. Each time I get in and out of the car is an extra 5 min. It takes that long to get myself in, and load the chair into the chair topper. 3 destinations means 8 in or out transfers, plus 2 more at the car wash makes 10. Extra 50 min.

Doctor visit – 1½ hours extra. I’d add in transportation time too, except that I was headed that way anyway to Fashion Valley mall.

Pillow shopping (this has become a real nuisance for me, trying to find the right pillow to help keep the cervical vertigo away – I’m on pillow try number 4) – 15 min extra. I went to the mall anyway, so it was just time spent in Brookstone.

Car wash – can’t use the usual style car wash, where they put the car on a conveyor belt and hit it with soapy water and long flaps as it goes along. I have to have my car hand washed. The car wash place has had bad experiences when the long flaps have gotten caught on the chair topper, hurting their equipment, not hurting my car. Extra time 30 min, extra money too!

Last but not least, my bowel program in the evening – 1 ¼ hours. What is typical for most people – 15 min? 1 hr extra.

So, today if you add up all my extras -
30 + 15 + 50 + 90 + 15 + 30 + 60 = 4 hrs 50 min.

My disability is a part-time job!

Of course, not every day is like this one. Some are worse, when my wrist is hurting enough that it alone slows me down, even for the most common of activities. But that is not typical. Though a year ago, I would not have called today typical either.

If I look at my life in the last 5 years overall, most days my disability took less time actually. I usually shower every other day, and my bowel program is every other day. There are plenty of days when I am busy at home, and don’t have the transfer time – though if I do go out, I prefer to string my errands together like this. There used to be days when I’d go to 6 places in a day, but I limit myself to 3 now because the transfers are hard on my wrist. I’d say half my days are primarily at home, half have errands I head out for.

And of course I don’t go to doctors re: my disability every day! PT once a week, and maybe an average of 1 visit otherwise for something once a week too. Lately this has been higher because of specific issues, and the wheelchair purchase as well. To get a really accurate measure I’d have to measure my time everywhere I went for at least a month. Perhaps I will, but I’ll only put a summary on the blog. Perhaps not, it only takes more precious time from my day.

So, being honest, I’d say the real average time spent per day when I don’t have a time-limited medical condition, is closer to about half that at 2 – 2 ½ hours a day. All the same, I’d rather spend that 2 hours reading a book! And I do fear that as I get older, I’ll be spending more time with these short term overuse conditions. What I have today may become truly typical soon enough.

Maybe sometime I’ll try to calculate how much money my disability takes too! Today was about $115 ($30 copay for doctor, $70 for pillow, $15 extra for carwash).

A for the doctor’s thoughts about surgery – he is concerned, like I am, that recovery could be really tough. He’d rather I try some non-surgical solutions first, especially since the pain has not been steady and growing for the past year. I’ve had times that I’ve been pain free, and now it is not anything like its worst. He gave me some anti-inflammatory patches, same medicine as the cream I’d been using with good results. The benefit of the patch is that it will last longer, and not get rubbed off easily. Medication is really just palliative though.

He wants me to try galvanic stimulation (gave his personal machine to borrow for 2 weeks to see if I like it) and to get a brace that goes on top of my hand and thumb, versus the typical brace which is under the hand. And more than anything, he reminds me that it will heal with true rest, with time.

I just don’t think I’m ready for someone to cut into me. So, decision is being put off for another couple of weeks.

daily planning

Today I do wonder about my commitment to write daily. I’m really tired and would like to go to bed. I can’t possibly write my best under these conditions! But in keeping with my goal of writing every day, I will keep on. If nothing else, these are good notes for the future.

The good news is that our electrical upgrade project is totally finished as of today. The handyman came and finished the patches on the walls (6 altogether) and did one other task for us. The electrician came and replaced the defective outlet outside, and the switch inside that got broken. I can tell where the spots were patched, but no one else will notice. It took 6 full weeks, and it’s almost hard to believe it’s done!

That took the whole morning. This afternoon I had a dental appointment, a stop at the library, and then half a dozen chores at home. Each week I try to touch base with my mother and 2 mother-in-laws. Today I called 2 of the 3 older ladies. I also emailed 2 places about wheelchair parts for my chair. If my insurance doesn’t pay for the front wheels I like, or the brakes I want, I will go after market for them. It’s been complicated to sort out what the true prices of these items are, and the best way to get them. And I did my daily stretches.

At that point it was time to cook dinner. Today I was cooking a large pot of chili, so that I’d have the leftovers next week when my sister, Johanna, and her daughter, Lizzie, come to visit. I am so excited about their visit! It’s been about 3 years I think since I last saw them both, not counting the short visit in Huntsville 2 years ago when my mother was in the hospital. I went to Huntsville first, to be there before, during, and right after surgery – that’s when I’m most helpful. I can deal with doctors and make sure my mom is properly cared for. I stayed at a motel near the hospital. Johanna arrived the day Mom was able to go home, and we were both there one night. Johanna was better able to help her at home than me, giving her physical support when Mom felt weak, and able to drive her car out for supplies as needed. By my going early, Johanna didn’t have to take as much time off from work. We were a good team, I thought.

But that hardly counts as a visit! Next week will be a whirlwind of activity, as life with an 8 year old always is. They will go to Sea World, Balboa Park and the Natural History museum for the whales IMAX, The Scripps Aquarium, to see the La Jolla seals, the zoo. Get the theme here? Lizzie is really into sea life and animals. I may not go along with quite all of these outings, but will do most of them. They are all accessible, with the exception of a few trails at the zoo.

Anyway, at this moment I’m tired. I sometimes wonder if my threshold for how much activity I can take is lower than non-disabled people, or am I just getting older? If I compare my energy level now with my own life 20 years ago, I have a lot less energy! And how much of that is being 30 pounds heavier? So hard to sort out this stuff.

Tomorrow I see the rehab doc. I stopped using the anti-inflammatory last week, and yesterday my wrist started acting up, so I hope that will give him a good idea of what my problem is. Could this be part of why I’m feeling so tired?

Wednesday’s TO DO list:

Up by 9

Shower and dress – 1 hour

Cat chores (boxes etc), breakfast & dishes, read email & paper – 45 min

Stretches – 45 min

Call for info about Greece cruise in Oct 2011 – 20 min

Figure out property tax appeal form for 2010 taxes – 20 min

Leave house at 12:10

1 PM appt with doctor – till 2:30 likely

3 – 4 Fashion Valley – shop for new pillow, birthday card and gift

4:30 – 5:30 car wash and call my mom

6 PM home

dinner prep – 1 hour

pay bills? – 1 hour

dinner around 8

Write in blog after dinner – as much time as I can!

It’s a full life!

Stomach trouble

Not feeling great this evening. I don’t know yet whether this is just an IBS (irritable bowel syndrome) episode or if it’s something worse. Jim isn’t sick, so I doubt it’s food poisoning or food gone bad. We had some pre-prepared stuff from Whole Foods, which usually is safe – but any pre-prepared food comes with risks. Perhaps there was too much oil in the food prep? I can’t tell now. I’ve taken some meds to quiet any cramping, and have only had one run to the bathroom. Time will tell. If I have another run soon, and it’s watery – then I’m sick. If there’s another run in an hour or two, more likely IBS. And if I start to feel nausea and not just gassy, that’s more likely a flu.

It wasn’t my intention to write about gastrointestinal problems today, but I’ll seize the moment.

It is very hard when you don’t have full sensation inside your body, to sort out symptoms and know what the problem is. Full bowels, full bladder, stomach cramps, menstrual cramps, gassiness, and bladder infections can all feel about the same. It takes years of paying attention to your body, increasing your body awareness and even then it’s hard to tell the difference at first.

Generally when something isn’t right in my lower body, creating a condition that would be uncomfortable or even painful for someone with full sensation, I get a condition called autonomic dysreflexia. When the pain signal doesn’t go up the spinal cord properly, a back up system kicks in – and makes your blood pressure rise, and usually gives you a headache and a slightly sweaty clammy feeling right at your injury level. When the dysflexia is really bad, like while I was in labor, the headache is severe and you feel like your eyes are going to bug out. Thankfully, usually, it is mild.

So, to solve the mystery of what isn’t right, I evaluate my sense of what my blood pressure is, whether my stomach feels cramped, whether I’m gassy, or have a fever (rare). Today my bp rise is very low, I feel gassy, and the crampy feeling had been coming in waves every 20 minutes or so – conclusion is bowel trouble. Bladder infections are slightly higher bp, more sweaty, and the crampyness is more constant. Fever only comes if the infection is really bad. Menstrual cramps, which I no longer have (knock on wood!) are more like bladder infections, without the fever, though I used to feel like I was getting sick with a flu, not hungry or interested in food.

The last time I had really bad dysreflexia was when I was very constipated from a day of flying, about 3 years ago. I imagine my hemorrhoids were really hurting, and it took 3 days to subside, though was only severe during bowel movements, not all day. My blood pressure was so high I debated going to a hospital because there is a risk of a stroke when it is that high, but I was in Huntsville alone staying at a hotel, while my mother was in the hospital recovering from surgery. Many emergency room doctors don’t know what autonomic dysreflexia is (I kid you not!) and I chose instead to keep my eye on it. There is a medication we can take that will lower the bp immediately, but stupidly I had left mine in San Diego. Never again will I travel without it. Luckily, like most paras, I have low blood pressure normally – 90/60 or 100/70 most of the time. It used to be lower when I was younger, prompting doctors to ask me if I was ok, and did I need to lie down. So, even if my bp shoots up, it is rarely high enough to cause me to worry about a stroke.

The easiest way for us to manage our bowels is to create a schedule with a regular frequency (once a day or every other day are most frequent) and then with one method or another, to stimulate the bowels to empty. If you eat foods at a consistent level, you can do this. It’s not that hard, but takes time to learn what your body can handle. How much corn or cherries or prunes can you eat?

I imagine that every SCI at some point has had bowel accidents from poor food control and when sick. They are NOT fun. You just don’t have the sphincter control to hold stuff IN. And of course these moments like to come when there’s no accessible bathroom at hand. I could tell some really gross out stories, but won’t – as much to spare myself the memories as to keep my audience! My worst days were about 10 years ago. I think I was starting to have IBS then, but didn’t realize it. I knew I was getting more sensitive to foods I was eating, but thought I had just stretched the rules I had set for myself. With time I’ve learned that the foods that trigger me most are animal fats and high roughage foods. I’m particularly careful with fast food, and only eat it when I’m heading home, and to a perfect bathroom. Spicy oily foods are a problem, like Thai and Indian, but I like them, so I just watch what I eat. And once in a while very hot soup triggers a reaction too. I suspect I have diverticulosis too, so I’m staying away from nuts and corn, at least a lot of them at any one time. A little is ok.

Anyone could have IBS and many people do. I bet a lot have it at a mild level, and don’t really know it, they just know that after eating they always head to the bathroom. I’ve noticed someone who often gets up in the middle of a meal to use the bathroom, and think this is unusual. But for someone who can get to a bathroom almost anywhere, quickly, it’s not a real issue. Or if someone can hold-it-in, albeit uncomfortably, for the time it takes to get to a bathroom, they’ll be ok.

About 5 years ago, I had jury duty, and my biggest worry that week was that I’d have a bathroom problem. I had just started to get a handle on my IBS, and take medication. I could easily have gotten a medical excuse, but I really wanted to do jury duty, because I never had before. For that whole week, I didn’t eat lunch. I couldn’t afford to have an IBS episode after eating lunch. The accessible bathrooms were a 15-minute walk from our courtroom (regular bathrooms were about 2 minutes away), and when I feel an urgent call to go I only have about a 10 minute warning. Plus you can’t just up and excuse yourself out of a courtroom any time you want to. So, to be on the safe side, I didn’t eat anything except fruit till I got home. And I was fine. A week of weird eating won’t hurt you. I was glad to do jury duty once, but not likely to do it again.

Now, about an hour after getting out of the bathroom, I can feel the cramping dying down. The medicine is probably relaxing those tissues, so it’s most likely IBS triggered by something in my dinner. I’ll be ok by the time I go to bed, and it’ll be forgotten by morning.

Expo Observations

I saw the 3 vendors I wanted to see first, to be sure I got what I went to the Expo for taken care of, before looking at anything else. No problem to cover that stuff in 2 hours, and very glad I went.

What surprised me though was how much I got out of the rest of the afternoon. I visited about 6 other booths deliberately, and stopped at a few more besides. There was a wide range of products and services being offered.

I picked up some free magazines – PN (used to be Paraplegia News), which is a Veterans’ mag but useful to anyone with a disability, and New Mobility, which I once subscribed to, but grew tired of. Time to look at them again, since one friend is suggesting I submit articles about my experience in Antarctica to them. Why not?

There was an Access San Diego booth, where I picked up a guide to our fair city. Not too much in it that is new to those who already know the town. But I’m glad it’s there for tourists.

Then I went to an A-Med booth. They are a supplier of medical supplies, and I have bought urological stuff from them for at least 4 years. Have you ever had a relationship with someone totally over the phone? This happens often with travel agents, or insurance adjusters, or even a catalog company. Well, I “knew” 2 people there and met them for the first time. I was hoping that people I knew would be manning the booth that day, and was lucky. So, now I have faces to go with names, for the people who put together my order for catheters – kind of funny really. There were a fair number of companies there that were selling medical supplies, or rather their services for those sales – there was little stock there in the convention center. I was a bit surprised at this, but I guess it makes sense. It actually is hard to figure out where to buy this stuff sometimes, especially to find places willing to bill insurance.

Two places I went to were companies that I’ve bought products, and I wanted to give them feedback, and see if they had solutions to problems I’d had with their products.

Nuprodx makes a portable shower chair. It’s a well engineered product, easy to assemble, fits in a small carry case. The problem I had with it was that the chair didn’t fit in the tubs in Argentina. And the rep there acknowledged that in South America and Europe (he didn’t say Asia, but I’d guess it should be added to the list) you need something added in between the seat and the legs to offset the legs and make the leg spacing narrower. No problem, I’ll order some of these spacers. I guess that not only are Americans larger people, but our tubs are too!

And the most interesting stop was at the Frog’s Legs people. (For those who don’t know what I’m talking about, these are little shock absorbers that attach to the small front wheel.) I asked if the shock absorbers stop working in time, because it seemed to me that when I hit a lot of hard bumps the Frog’s legs made the ride worse, not better. And I was told, “Yes, after about 5 – 6 years” That’s me! So, they squeezed me in to do a repair at the very end of the day, and popped out some small plastic piece that was squooshed, and undersized for my weight as well. The Frog’s Legs people were really busy. The man there was the founder and owner of the company, lives in Iowa. His wife was taking care of sales, and they had one other worker. They were hopping, non- stop the whole day. The main reason, besides a good product, priced well for that day as well, was that they were selling wheels in all kinds of bright colors, or with colored axles. Very cool.

Anyway, I get my repair (free) and we’re headed off to the car, and something starts to click, click, click. My left front wheel was making a clatter. So, we’re back to the FL people, who were still fitting new wheels on chairs. The trouble was that the front wheel was semi-pneumatic, but had broken down inside and split. I guess the repaired FL triggered something to get loose and rattle about. I don’t fully understand what happened, but essentially the old wheels had worn out too, and so I got fitted with new black wheels with a bright orange hub. And I can tell the difference.

The service these guys provided was top notch (they kept working after the lights in the hall were dimmed and the expo finished for the day, to get as many serviced as possible), and I believe they may have just kept a customer. I was ready to say that I didn’t want Frog’s Legs anymore, that they didn’t do anything. The titanium chair folk say you don’t need them. I can tell the difference between what I had and the new wheels, though at this moment I am still not sure if it’s the new wheels (which roll easier with less drag) or the shocks. Sometime this week I’ll have to get out on rougher terrain and decide for sure.

It is just one other thing that shows me that it’s time for a new chair. Something as simple as new front wheels and fixed shocks (cost $40) already makes this chair easier to push. How come the wheelchair repair folk, when I go for annual “check ups” don’t advocate changing parts like this? It seems they only do repairs, fix things that are broken, as opposed to do any upgrades.

It is very hard when a problem comes up on you gradually, to realize there is a problem. Perhaps a year ago I should have said my chair was hard to push, and then they’d see the front wheels compressing. Who knows? What else in this chair is cracking, or compressing, or slowly failing?

Parking was ok. Bathroom situation was problematic. Lines, and long waits. When I used to intermittent cath myself it took 15 minutes. Now when all I have to do is empty a legbag I am quick, but not everyone else was. And 2 handicapped stalls were occupied (and dirty) the whole day, while 8 other stalls were often empty. They could have brought in accessible porta-potties.

The 2 freight elevators were busy all day too, and often full. Each elevator could hold about 8 wheelchairs and family. Going up from the parking lot, there was a little girl in the elevator with me who was really excited about never being in this kind of elevator before. I had to smile. I’ve seen quite a few freight and service elevators and entrances in my day. But, perhaps the ADA has changed some of that. Perhaps you have to be at a convention where there are thousands of wheelchairs, which is really an extenuating circumstance if you think about it, before you need to take a back entrance now. I think that’s a good thing.

It also struck me how cheerful the crowd was in general. All kinds of people, all ages. Jim commented on how much variety there was on how people in chairs move themselves. Some are real speed demons, some are very pokey. Some, like me, took pushes most of the time. But overall, the crowd was easy going and pleasant – much more so that you’d see at the Del Mar Fair. It was not a crowd of sick and ill people, or militant angry ones either. It was rather an enjoyable day.

Abilities Expo

I am really tired, but I'm glad we went up to LA today. I dislike driving through LA, the traffic is always so bad. Today I was thankful Jim was driving. Even with stop and go traffic for the last 20 miles, we got to the LA Convention center in 3 hours. The parking wasn't as bad as I expected either. There was a large area set aside for vehicles with handicapped plates - no cross hatches there mind you - but enough space that we got a parking spot.

I won't go into details now, mainly because I am so tired - but suffice it to say that we were there 5 hours, I saw all the vendors I wanted to and more, I got new front wheels and my frog's legs fixed, and I'm a lot closer to knowing what kind of chair I want to order. Mission accomplished. I'd like to get a titanium chair, color - salsa red, with Natural Fit handrims for easier pushing.

I still have a few questions to answer myself - ones where I have to weigh the relative value of various options, and one feature that I couldn't see that I'd love to see before I buy.

There was a lot of cool stuff at the expo too - extra wheels you can add to the foot pedals up front that are larger and good for going over rough ground, standing frames, ratchet looking handles that attach to the back wheels, and power assist wheels. The Colours chairs look like their creators must have been Harley motorcycle riders before their injuries - shiny chrome and hot colors, with playboy bunny trim. Nothing that I had to have, but curious stuff all the same.

And on the way home we stopped at a restaurant in Carlsbad owned by a friend. That's probably as much of why I'm tired as the expo itself, but we decided to take advantage of being in North County to try a place we hadn't been to before because it is a 45 minute drive from home.

I brought home a ton of reading material, and I know that in the next week I'll slowly sift through it. My next step is an email to the supplier to see if there's any way he can show me that last feature that wasn't at the expo. Then comes an appointment for measurements.

A Commitment to Write

I just took 2 weeks off from writing. I could say it was because of too many things going on – the still-unfinished work on the house, Jim’s mother visiting for a full week, and then Jim being away on business for the last 4 days – but we all know that’s not the whole story. Though I do have to say that each of those conditions have been stressful in their own ways. Particularly, having a houseguest made it difficult to have time to myself, let alone spend a few hours all at once concentrating on my writing. But like any time you have a friend that always seems too busy to see you, there’s some other reason there as well – could be that person’s disorganization and nothing personal, or could be they don’t really like you much. I needed to regroup. My blog today is not quite like what I was writing while on the cruise.

So, although I was not writing, that doesn’t mean I was not thinking – about what this blog means to me, who I am writing for, or who I want to reach (if anyone), what the best format is, and how much time I want to devote to it. I have come up with some partial answers, and I believe they will be enough, for now.

About a week after getting back from my vacation I figured out how to attach an analytics program to my blog, so I can now see how many visitors I get, and some basics about them – New or returning?, How many pages viewed?, Where do they live? – which also includes some rather useless facts for my purposes like What kind of internet connection they have! I can’t see individual addresses, so I can’t really tell who is or isn’t reading my blog. But I realized that it doesn’t matter! I can tell I have some regular readers, and that is enough.

10 years ago I first started thinking about, talking about, attempting writing. I didn’t get very far. I’d write an outline, or come up with some theme for a book. I couldn’t get a grip on what I wanted to say. I joined a writer’s group for a short time, but was frustrated because it felt like the sole purpose of the group was to tear apart someone’s writing. Perhaps I had just picked the wrong group, one that was too critical and not supportive enough. I didn’t contribute much, either my own writing or in comments to others. I didn’t fit in with them, for whatever reason. Perhaps I should have looked for another group then, but my life was so “busy”. So, I dabbled on my own, writing letters that I never intended to send – saying things I would never have the courage to say, journal entries, but nothing consistent. Keeping everything to myself, I had no feedback, and I found it harder to maintain the self-discipline needed to write. And then the shit hit the fan, got divorced, moved across the country. I would say I’ve only started feeling settled again since 2006.

Enter this blog, and though I still don’t get a lot of feedback, nonetheless because of the analytics program, I know I have readers. Voluntary readers! People who come back ONLY because they want to, not because they have to listen in a class, or to read my work so that I will read theirs. It’s an incredible feeling to know that someone reads your work because they enjoy it, not necessarily because it’s the best writing in the world, or because they know it’ll make me feel better (though I do know that personal friends care about my feelings and may be more interested just because they know me). All the same, knowing that on any given day someone will look to see if I have something new, makes me feel like writing more. What more reinforcement could anyone want or need? The blog has been working for me, in the sense that it makes me want to write, and satisfies my desire to put thoughts into words “out there”, not just holding them to myself. The format of a blog is perfect for me.

There are a lot of better-constructed, eloquent, and compelling blogs. I’ve read a few. I saw one recently about what it might be like if you only had 37 days to live. The blog is beautiful to look at, lots of interesting links, photos, poetry, true living-in-the-moment stuff. Why waste time on ugliness if you are going to die tomorrow, right? Another blog, by a young lady I know, is incredibly perceptive and descriptive. Her entries are short, but elegant, and you are left with images that touch your heart. I hope that one day she is able to channel that writing into some career so she can do what she enjoys and make money. And another I’ve seen recently is about the pain, daily, of losing someone you love to cancer. The first blogs I really followed though were written either by my son, Stephen, when he biked from Oregon to Maryland in summer 2007 or by the people he met on that trip who also kept blogs of their journeys – travel blogs – and I loved them immensely.

My blog is not any of these, and I have had moments of feeling inadequacy, knowing that I lose people because of these failings. I wish I were more creative, concise, and exciting. But those things are not “me”. And my life is interesting enough. It leads me to the question of what I am writing for.

In my 20s I spent the better part of 10 years in therapy. I was in a PhD program for clinical psychology at the time, so I could chalk it up to training. Indeed, 1 year of group therapy, and 1 of individual, was required for graduation. But I had way more than 2 years of therapy. I needed way more than 2 years. I’m not going to review my early childhood traumas here, nor discuss my first marriage, or even my current (second) marriage for that matter. Suffice it to say there was plenty of fuel for the fire. I never did get that PhD by the way, I quit after my Master’s and the coursework for the PhD were done. I needed to do my dissertation yet, which is not a small thing. But, David was little and I realized that more than anything I wanted to be a stay-at-home mom, and so I dropped out.

The one thing that I would say my therapist and I agreed on at the end of that first long therapy run (I’ve had more therapy since then, around the time of my divorce), was that I hadn’t really dealt with how my disability affected me. I would treat it then as a given, like having brown eyes and hair. And for the most part I have lived that way all these years. But the truth is, that it really has made a difference in who I am. And the even clearer truth is that it took me over 30 years of living this life to really realize it. 10 years ago I was beginning to understand this, and now … well, I’m beginning to write.

My disability has influenced so many parts of my life, it’s hard to know where to begin. I believe I’m tougher than most women, and have more patience. I have to gloss over some of the little irritations. Take last night for example. I had my book club – a great discussion about a book I generally didn’t like, but do not regret reading for a second. It was a very lively meeting and I thoroughly enjoyed myself. The meeting was at a house 3 doors down from my house. I say DOWN because it was literally down a hill too steep for me to push my chair down or up. One woman was stopping by before the meeting, so I arranged a push down from her. It took 2 people to push me back up. I could have driven my car there, parking in the driveway, totally independent. But isn’t that ridiculous? To drive 3 houses down? On the other hand, how many people do you know that need 2 people to accompany them home a full distance of 3 houses? Or that have to pre –arrange transportation by walking 3 houses? Oh, the ladies in my group were more than willing to help, and I had more helpers than I needed. I actually had 3 people walking down with me, and 3 willing to walk up as well. Nice to know I am not lacking in friends. But a very small part of this made me feel like a child who can’t cross the street without holding an adult’s hand. Emphasize very small please. This isn’t really the same. But it is different from what most adults have to do. It’s a small irritation, that would have been forgotten already if not for this blog. I don’t really mind this sort of stuff, I long ago started to be grateful when people held the door for me. But not all people with disabilities are like this. And I know a lot of temporarily-able-bodied people have trouble with accepting help too.

I think that for any given day I can come up with at least 3 little, little things like this, where some small item or some small behavior is just a bit different. And any one of these by themselves would be nothing, but all together, it paints a different picture. Today’s 3 things – 1) asking the electrician to close the window he opened, not because it was cold but because I couldn’t reach it later, 2) feeling annoyed that I have to hire someone to patch walls that I do believe I could do if I could reach them and 3) arriving early at a cooking class/wine dinner to get seating because I knew if I didn’t – all the spots that I could “park” at would be taken and I’d end up rearranging the whole room.

I believe some would say I’m feeling sorry for myself because I’m talking about all my hardships. I won’t deny that I have days like that, rare but not unheard of. But mostly I’m too adjusted to this life, and cool headed to bother with feeling sorry for myself. Life is too short, just get on with it. I do have days when the nuisances I have to deal with make me angry too. If you had known me years ago you’d have seen both more anger and more self pity. We soften as we age, I think. If anything, I suspect my emotions related to my disability are a bit blunted now. A better accusation might be that I’m rather self centered, and I’d say again – guilty as charged. But how else do I write this kind of thesis?

So, why am I writing? I suppose it’s a bit of therapy. I’m putting together my reflections on what being a victim of a ridiculous violent act is like, and of what it feels like to have a broken body – one that is not dying, but doesn’t work quite right either.

And who am I writing for? That is something that I hope this blog in time will help me answer. I’m going to keep writing, as close to daily as I possibly can, even if the entry is short and written at 11:50 PM. And with time, I know that themes will come up. Some have already – equipment, and aches and pains.

I could be writing something for rehabilitation staff, on how living with paraplegia feels. Or perhaps what will emerge will be stories to encourage others with disabilities to explore more, and accept less mediocrity. I could see writings to the general public to increase awareness, and tolerance. Or maybe I just want to reach my sons to explain who I am.

Perhaps there is a book in me! Maybe articles in disability magazines, or maybe mainstream ones? At this point, only people who like to read are going to stay with me, I recognize that my blog posts are long. I’m torn between writing less to hold onto more people, and writing as much as my heart desires. If I were a better writer, I might be able to make the posts shorter but convey the same message. I don’t pretend to have excellent literary skills.

Over the past 2 weeks, I have felt like an addict needing a fix, wanting to get back to my writing, and getting in a bad mood because I couldn’t. Dozens of topics came to mind (especially as I was trying to fall asleep) – Choosing a car, Having kids, Wheelchair dancing, Scars, $ and Time, Seating, Parking, Having a housekeeper….. The most clear point is that this matters to me!

There’s so much material there! Some mundane stuff, some serious. I will never lack for a topic. What I worry that I’ll lack is time. I’m not ill, not dying. I don’t have a job, or kids at home. At the moment I’m not consistently doing volunteer work. But somehow, I never seem to have free time. The way my life is constructed now there are always chores, laundry, something to fix on the house, dinner to make, plants to take care of, not to mention cats. I handle our finances. When we plan vacations, I do the lion’s share of the work. My life is “full”. And then on top, we get visitors, or even larger home projects (this electrical one is finally essentially done as of today, it’s been as complicated as a kitchen remodel).

As I’ve thought about how important writing is becoming to me, I’ve also had to think about how I’m going to allocate the time for it. I would like to spend 4 hours each day writing, and this is going to mean some changes around my home. Less time for reading, ok, no problem. Some tasks won’t get done as quickly. So what if the eaves of the house aren’t painted in June, but in September instead. I don’t have to cook dinner every day. There will be time. I will create time.

You see, while Jim’s mom was here – he went to work every day as usual, including going to the gym after work some days, because it was easy to see that these things have value and are not to be put off. He could do this because I was here, and his mom wasn’t alone. If I’d been away, or didn’t exist, he’d be more conscientious about getting home earlier. I’m not putting Jim down, we talked about this before she arrived and agreed it was ok. But as the week of her visit wore on, I realized that while she was here I could still do the chores, laundry and grocery shopping – again because you could see their value - but the one thing I really felt like I couldn’t do was write. Our lives were not set up where my writing carried any importance, it’s been hobby or entertainment – fluff in my life. And at the end of the week I was drained.

To be able to write daily, I have to make a commitment, and say that my writing is important - even if it’s only important to me. For all I know, in six months I’ll be done with this, and it won’t go any further than the blog itself. In the meantime, I’m going to write. My plan is to write daily for as long as I enjoy it, and hope that in time it will become more clear to me who I am writing for, and what my goals are. In the meantime I believe it will be a therapeutic activity for me, if nothing else. It feels important, and when I write one day I sleep better that night. I am going to think of these posts as rough drafts for a future project that isn’t yet focused.

Some updates – my wrist is doing well, surprisingly well. I think I respond well to anti-inflammatories. Next week I see my rehab doc and hand surgeon. I stopped taking the meds yesterday so that my wrist will be at its usual inflamed condition when I see the docs.

The Abilities Expo is tomorrow and I’m so excited! I’ve been hearing great things about some new rims that sound much easier to grip and push.

Struggling with cat care again – Jasper’s vomiting hasn’t gotten better with the new diet, so he’s on daily medication (Prednisone) and that is helping a lot, but pilling him is NOT easy – especially when Jim is away. I’ve had to hire help a few days this week. At first he fought so much I didn’t want to ask neighbors for help. Now, it’s easier, so next time Jim travels I may ask someone local, maybe the kid across the street, to help me. It would be nice to be able to do this alone, but that may take a while yet. For me to pill him I have to get him on my lap, and so far I haven’t figured out how to do this.

Jim and I are planning our next cruise – likely to be spring or fall 2011. We’re looking at the listings just coming out for next year. Rome and the Greek Islands this time!

It’s amazing how long this electrical project has taken. Today they essentially finished – only one outlet left to replace (the one they brought today was defective) and one dimmer switch got broken today. The work passed inspection today, yeah! I still have walls to patch in 6 places, which was to happen yesterday – but the handyman called to cancel the appointment – a friend in the hospital. Yesterday I had my first experience blowing a kitchen circuit. I have a new panel, why did it happen? Well, the fridge, lights, microwave and toaster oven are on the same circuit, and all were running. So, they fixed that today too, only another $350. The good news was, that although alone, I could go outside and flip the breaker myself and reset it – woohoo!