Wheelchair (again?) and dancing

I knew that my chair and ChairTopper would need adjustments. I worried that mistakes would be made in the order. I expected to have difficulties with transfers till I could get used to the new chair. I hoped that good things would come from it too, like being easy on my wrists. But, there’s always the unexpected! So far these are my unexpected experiences:

I’m not bottoming out on my cushion as much, which means pressure is more equal on my bottom in this chair than the old one, which is great! Eventually I want to get a pressure mapping done to be sure though.

Unfortunately I’ve had one negative side effect of this chair. My fingertips are all red, shiny and tender, almost blistery. Sunday evening I noticed that my left index finger hurt, and I thought maybe I had burned it on something. Last night, and especially when I got up this morning I realized that all my fingers were hurting. It’s as if they are going to start blisters. The left index finger is still the worst, but they all hurt. Picking up hot pizza to eat at dinner was very painful. Hot water too. I am guessing that I’m holding the rims of my chair differently with the Natural Fit rims, and using my fingertips more – so I’m getting blisters, much like someone with new shoes might get a blister on the heal. I never expected this! At the moment I’m not worried about it. I’m going to keep pushing myself about to develop some calluses on my fingers, as long as I don’t get outright full blisters. If it didn’t hurt I’d find it amusing.

I’ve decided that I really don’t like the yellow spokes. Oh well. I’ll put in the extra $100 needed for my second set of wheels to have orange spokes, which is what I really wanted in the first place, but was being cheap about paying extra for. The second set will be just like these, only with orange spokes, and solid tires. Later I’ll swap the pneumatics on this set with the solids on the other. The orange cost more, not because of the color, but because it’s a wheel with only 12 spokes instead of this one with 18. It’s a higher end model, and comes in different colors. So there are other benefits besides color, though they are minimal for me.

+++++++

On another topic – I went back to the wheelchair dancing class today, because a new friend of mine, and I’m going to give her name – Ginni, volunteered to be my regular dance partner. I admire her pluck and courage! And I am grateful for her friendship. I know it won’t be long before I call her an old and dear friend. It was a hard class for her today. The waltz is a beautiful dance, and very fun for the wheelchair user, but harder on the ones walking. She had never danced before, and she stepped into a session in progress – in its 6th class out of an 8 class session. Many of the people in this group have been to multiple sessions, and most of the standing partners have been dancers for years. So, compared with them she looked clumsy, and I think she felt a bit goofy. But she did great. She mastered the most important first basic step, and has a feel for how you have to count steps and move. If she’s enjoying herself, I bet she will be one of the best wheelchair dance partners around because she has no other dance experience to mess her up. Often female able-bodied partners have a hard time learning to lead instead of follow, for example. And men want to do a lot of extra steps that don’t work with a wheelchair partner.

People have asked me if it was hard to learn how to drive with hand controls, and I tell them I never knew how to drive with my feet. Ginni will be like that in dancing. Though I kind of hope she’ll enjoy this enough to try dancing with her boyfriend too. I’m reminded of a story. My cousin’s husband knew he would be asked to dance at his daughter’s wedding, so he and my cousin decided to take some dance classes. He’s overweight and at first he couldn’t get through even one song without getting winded. But he enjoyed the dancing so much, and the people too, that they have continued to dance socially, and he has gone on to compete. I’ve seen videos of him dancing (never one of my cousin who sticks to the sidelines) and it’s become a kind of passion for him – if not an obsession. So, Ginni, you never know!

For my part – it wasn’t as much exercise for me today as some dance classes were, because the waltz is easy in the wheelchair, and because Ginni needed more instruction on the simpler moves. But, I didn’t hurt myself! More important to me though was knowing that I was partnered with someone I could talk to when I was hurting, and we could adapt accordingly. And I had fun. We’re going to have a private lesson on Friday to help Ginni get more confidence and to feel like she can follow along with the class a little better. I’m sure she’ll do fine.

We’ve agreed that we’ll see how the private lesson goes, and the last 2 weeks of this class session and decide whether to continue then. I’m happy to be back, more than I expected, but still not so committed as to take any partner.

Wheelchair and Parties

I’m recovering today from an extremely busy weekend – we entertained friends yesterday evening, so there was a good amount of prep and some cooking. But besides that, and besides drinking a bit more than I should have, …AND besides spending time watching the US play in the world cup…. My body is also aching from getting used to my new wheelchair. I expected this to happen though.

I used the new chair all weekend, but not this morning. The new chair was back in its favorite hiding spot (the trunk of the car) till I could get the Chair Topper adjusted this afternoon. And now the old chair is in the trunk, and I’m in the new one – for good now! It fits well in the ChairTopper, even with the foot pedals on.

OK – a short list now:
Need a second set of solid wheels for travel, and to make up my mind what exactly I want. That won’t be too hard.

Need to get locking rings put on those wheels, and to have the D’s locks already on the chair checked. One cable seems to be bending when the chair folds, but the locks are working ok.

More shopping – for a new net for under the chair.

And my arms are too high, I’m hoping to get shorter ones or to swap out the top piece.

I’ve sorted out all the transfers except chair to bed, where I just seem to have to put my hand and weight onto the chair seat back. Eventually I’ll come up with a solution. If only 1 of the 8 typical transfers I do is a problem, I must be able to figure out the last one too.

And lastly is the getting used to it all. I wonder if this is like breaking in new hiking boots? Today my neck is achey. If it didn’t hurt, I’d even say it feels like doing a good stretch. My arms hurt a little too, which I think is from hitting the same spot on the inside of my elbow on the too-high arm rests. And last but not least, the new shape handrims are comfortable, but I hold them with a different part of my hand – more of the palm. That means I’ll be building up new calluses, and right now they are tender.

Overall – I’m pretty happy right now. This is feeling like a success story.

On Entertaining;

I like having friends over for dinner, a wine tasting, or holidays. Jim and another man started a company many years ago, and sold it several years later, but also quite a few years back at this point. The main group of 6 engineers in the company get together for a reunion once a year. I don’t know those people well, because I wasn’t in a relationship with Jim back in those days. But I enjoy organizing those dinners too. When my kids were little I had fun organizing their birthday parties. This is just something I have fun with, and like to do. Sometimes I think I missed my calling – I should have been a high powered admin, or a professional closet cleaner or caterer’s assistant who does all but the cooking. Just something with lots of organizing!

So, I enjoyed planning, preparing and having our group over for dinner yesterday. I try to imagine the little touches that others will never know about - making sure that someone who knows about wine gets a glass he can swirl it in, trying to pick wine charms for each person so they will like them (men don’t get pink flowers!). If I’m arranging seating I am careful whom I put next to whom. Planning an event is like a giant puzzle to solve! And usually it pays off, and everyone has a good time, which is all the reward I need. I learned one valuable lesson once though, that sometimes it is better to have guests NOT know each other too well.

I have found that invariably when people come to our house the first time, they are surprised. Something isn’t what they expect – you can tell by the expressions on their faces. I am guessing, but I imagine the reasons are varied and range from better food than expected or a house set up with flowers or they like the people more than they expected.

Before Jim and I married, neither of us entertained. Jim especially didn’t invite people over. When my Ex and I entertained, he was often the cook – though rarely had anything ready by the time people arrived – and my job was support. If either Jim or I were alone now I doubt we’d entertain now either. Together we’re a good team. I do most of the planning and organizing, and whatever cooking is needed. Jim listens to me fuss, and serves as sounding board when decisions have to be made. He double checks seatings and emails before making a final decision. He’s invaluable for set up and clean up. And he’s a good shopper, not minding if we spend a little money on flowers or wine. I am sure that most of our guests know that I do most of the planning. They might not give Jim enough credit, but they aren’t far wrong if they assume our parties are more my show.

I sometimes wonder whether people are surprised when I do a good job because they don’t expect as much from me because of the wheelchair, or because they just don’t know me well or maybe it’s because they are surprised anyone would go to the depth of planning I do (or that they perceive I do). I suspect it’s maybe all three.

In general people tend to reduce their expectations of people in wheelchairs, though I’d be surprised if everyone would admit it. Hey, I reduce my expectations! I’m likely to adjust expectations according to what my sense of their disability is, but I play this game, and really I know better. I think when you first meet someone with a disability, without even wanting to, you take a measure of their strength, stamina and general activity. I’ll tend to forget that someone who isn’t very strong and full of energy might hire others to do their work, and it’s as much the disabled person’s creation as anyone else’s.

I don’t reveal much about myself in conversation. When I meet new people, they quickly find out I’m not working, and then frequently conversation stops there. It doesn’t help that I’m married to a man who sometimes can’t STOP talking! I love him anyway, and most of the time it’s a good arrangement for me. I’d just as soon not talk about myself, but the end result is that even my closer friends often don’t know what I have and haven’t done in my life. I don’t dwell on that stuff much either. I’ve done a lot of volunteer work in my life, but I’ve thrown away almost all the files and notes from those years. I’ve had plenty of years of schooling, but except for once in a while dropping the “MIT” name in conversation I don’t talk about it, for I can’t say it’s gotten me much in life. Generally now I’m a domestic person, enjoying taking care of house, yard, food and entertainment. That’s me. With a large dose of taking care of me in there.

And lastly people are surprised at one of our gatherings, because many people don’t entertain now. Maybe it’s the social circle I’m in, or even the social class. But what happened to a group of friends getting together for a Saturday night party? I feel like I haven’t seen that since grad school days. I know some groups, especially people in their 20s like my sons, will get together to watch a big game, or a bbq – but these things don’t seem to happen much in my age range anymore. It’s more likely that we’ll go out to eat with another couple. That’s good too, no complaints. My parents weren’t particularly social people, but 3 -4 times a year they would go to someone’s party, and I can remember sitting on the steps in our house watching one of my parent’s parties too. It’s like the old fashioned office Christmas Eve party – people don’t have them anymore. Except some very wealthy people, who throw lavish parties for 200, and we know very few of those!

I think these parties are good though. I’ve gotten positive feedback (well, who would give me bad feedback?) from yesterday’s gathering, and a couple of people have said how much they enjoyed meeting new people. I’m not doing any matchmaking, but even married folk benefit from making new friends.

I’ll never know the answer to whether I surprise people by my planning because of who I am, my disability or because Jim and I invite people over at all. It doesn’t really matter, as long as we and our guests are having a good time.

SItting in the new chair

Good news. I’m in my new chair. Everything went well yesterday at the brake shop. The technician there had another way of attaching the locking pin to the frame. It took a couple of tries to find a good position, but the brakes work now. I had to go back to the place I bought the chair from though, to get one of the original parts of the Tilite chair that was taken off when they put the brakes on the first time. I wish the brake shop billed insurance, for then I would have gone there directly in the first place. To understand the piece that they took off - imagine you have a pole with a cap on the end (perhaps a long thing for cleaning high windows) and you get an extension for the pole. So you take off the cap, screw in the attachment. It’s like that on my chair. A cap end for my axle was taken off, so the attachment for the brakes could go next to the axle. But now the brakes are attached directly to the frame, so that attachment isn’t needed, and it looks better with the original cap end.

I still am afraid to put the chair in the ChairTopper though, and will have that appointment next week. So, for now I use my chair at home or only when I go out with Jim and he can load it into the trunk.

How’s it feel? Good! Different. I am sitting up straighter, but perhaps not as much of a difference as I’d like. To sit up really straight I’d need a shorter back I think, and then it would be hard for anyone to push me. Still, this is an improvement.

I absolutely LOVE the new wheels. They feel so much better in my hands, and the chair is easier to push. I hope this makes a difference to my wrist, but only time will tell. I’m getting used to the yellow spokes too, maybe they’ll be ok.

The foot pedals are different – lighter weight, a bit tighter together, and I don’t need the shoe holders I had attached to the last chair to keep my feet from slipping off at the back. My feet do scoot back, but not enough to fall off, because the whole plate is set back further. My feet do tend to turn out on this chair, but I don’t know how much this will bother me. So far it’s ok.

And I love the brakes too, though I keep reaching for them in the wrong place. They hold really well.

The only feature I’m not crazy about are the armrests. #1 they are heavy. This is a lightweight chair, why they can’t make their arms light is beyond me. #2 They are hard to put on and take off, especially one-handed. The release is something you squeeze, and you have to keep it squeezed while you pull up – but it’s slippery, and doesn’t have a hook or bump at the top to hold onto. I plan to make some suggestions to Tilite’s design department! #3 is my own mistake, and I will rectify this as soon as I can. The arm tops are too high. I am pretty sure now that I misunderstood something on the order form – a measurement I thought was the length from back to front, and now I suspect it was the height. Anyway I am pretty sure I can get the right size piece and pop it in myself. If I’m lucky they’ll take the wrong ones back and it won’t cost me anything! But I will admit it was my own mistake, though perhaps the salesman could have noticed my mistake.

The real test of the chair though, isn’t just how neat the features are, and not even totally the medical benefits. At this moment, after a full day in the new chair, my back hurts a bit – probably related to the new posture.

What makes or breaks whether the chair will work out is also related to how easy or hard it is to use in everyday tasks. Most of the time sitting in this chair, I could forget I was in the new one – it’s so similar to the old one. The high arms are a bit of a reminder – they get in the way when I lean over to pick something up, and my elbow pit hits as I push. This will change.

I’ve done most of my normal transfers - on/off bed, on/off shower seat, in/out of car, on/off toilet. Only 2 seem to be tougher now – getting ON the bed, and getting OFF the shower seat. It’s funny that it’s these 2, because they are so different, but they have one thing in common. For both of these, I put my right hand on the back of the seat upholstery and push down there. This seat back is more flexible, less sturdy. It’s tighter from push handle to push handle, but it’s a thin material at the top, and flops forward and backward more. But I think I can adjust, and everything will be ok.

I’m still not sure about the yellow spokes. I think I’ll poll my friends and then decide. I suspect that will be the hardest item to change or adjust to!

Wheel Lock problems 1

It’s late and I’m tired, but I have to write about what happened today related to my new wheelchair. The fact that it’s late and I’m tired is, of course, my own fault and totally unrelated to the new chair! I had a busy day, only about 45 minutes of which was connected to this topic. Generally I had a good day – lunch with one friend, dinner with another (Jim is out of town), a haircut, some shopping for clothes and wall paint, and from a sports shop I bought a few rolls of tape and underwrap for my wrist. I thought maybe taping my wrist would be more comfortable than splinting it. I’m just tired because I was out all day (8:30 till 8:30), in and out of the car 7 times, and came home to hungry needy cats and a pile of mail and packages to sort out.

Now I want to take a few minutes to document what happened today. Where did I leave off? I believe on Monday I noted that my new chair was in the trunk of my car because it didn’t fit into the ChairTopper, and I had an appointment for this morning.

9 AM found me at the Ability Center talking to a man named Greg who is in charge of car service. We took the chair out, played with it, assessed the problem – and his conclusion is that he doesn’t even want to try to adjust the ChairTopper until we can solve the wheel lock problem. His concern is that not only will the chair not fold enough, but that the piston of the locking pins on each side have a cable that runs over to the control lever, and when the chair folds these cable ends crash into each other – and in time will break at that point. He even thought that perhaps they were damaged already. So, if I have to change the locks anyway, might as well wait till the chair folds thinner. Greg seemed to think that if we position the locking pin higher than the axle it would work, and that makes sense to me.

So, I put in a call and left a message for the man who I’ve been in touch with at the D’s Locks shop. He called me back while I was at lunch. However Steve at D’s Locks seems to think Greg’s idea will not work, and if it was to work it would mean a specifically machined part. He made it sound like the locks won’t work on my kind of chair – so why didn’t he say so in the first place before I ordered it? I suspect he didn’t know the chair was a folding chair (that Mobility didn’t mention it because Tilite has both rigid and folding options on all models – so only one name), and the locks will work with a rigid frame. He suggested I pull out the cables each time I fold the chair, but that will only give me ½ an inch tighter fold, and I don’t really think I can do this physically easily anyway, nor do I want to. He said he might have smaller pistons, but that still would have them hitting.

I have an appointment to go see him on Friday morning to see if we can work this out. I still don’t see why they have to be installed at the same height. Off setting them would make them slide past each other, and not damage the cable.

Meanwhile the chair is staying in the trunk of my car, and I’ve been able to show it off to 3 people anyway! Consensus is that the red orange color is great. No verdict on the yellow spokes yet.



3 other items of note.

My friend at dinner gave me the name of an ADA lawyer who I might contact if I want to file a complaint about the back row seating (formerly standing room only) at the Civic Theater. So, I need to get my letter written to the San Diego Opera, and the city public works department first. That’s the process – did direct contact with the annoying facility not generate any result?

Another friend volunteered to be my regular dance partner at classes. I am so touched that she offered, and excited too. There are 3 more classes in this session, and I hope we get to all of them. I hope I’ll have my new chair too, but that may be too optimistic. After 3 classes we’ll know if this is a good idea. She says she has 2 left feet, and no idea how to dance, but I don’t care. All I need is someone willing to try, who will listen to my instructions so that I don’t get hurt, and is strong enough to do the maneuvers where she moves my chair around.

My wrist is once again feeling ok, though I do notice that if I just bump it wrong I feel a sharp pain. Imagine a very bad case of funny bone in your elbow.

New wheelchair!

The new wheelchair and wheel locks arrived on Friday, and I picked them up today. Yay! Everything was as it should be, what I ordered is what arrived. And I like it overall, so why aren’t I more excited? Well – I suppose there are 3 reasons.

1 – I am not sure I like the yellow spokes. It seems like a silly thing to fuss about, but the yellow just doesn’t look like I expected. It’s not so bad that I have to get something else right away, but I admit that I wish I had ordered black.

2 – The chair is not folding as flat as I would like. I don’t know if this will be an issue or not yet. At the moment I can’t fit the folded chair into my Chair Topper on my car, but I have an appointment for Wednesday to take care of this. And then we’ll see. The reason it doesn’t fold as flat as I expected is the wheel locks, and perhaps there is some way to adjust that feature.

3 – It’s a wheelchair. Just because something is new and expensive ($5000 is expensive to me! Even if insurance pays for it.) doesn’t make it exciting. Getting a wheelchair is not like getting a new opal ring or a beautiful painting. It’s more like buying a fridge. Wheelchairs aren’t luxuries, not really, even if they have a few bells and whistles.

So, having gotten all those feelings out of my system – I do like the new chair. A lot really.

Right now it is in the trunk of my car. Jim is headed out of town tomorrow on a 7 AM flight, so there’s no point in bringing it into the house. I could use my chair at home, but it would have to be loaded into the trunk of my car on Wednesday morning for the ChairTopper appointment, which I can’t do myself. My next door neighbors are wonderful, but there’s only so many times I’m going to pester them for favors. My new chair can stay in the trunk for 2 days – I never use the trunk anyway.

Here’s a digression. I never use the trunk, why? I can get the trunk lid open and shut. But I worry that if I put something into the trunk near the back edge, that it might move while I’m driving. And when I get home whatever it is will have shifted to closer to the back seat and I won’t be able to reach it. So, when I buy things I put them on the back seat or behind the front seats, especially if they are perishable or need to be refrigerated or will get damaged by heat.

Here are all the good things about my new chair.

It is SO easy to push. It’s going to take me some time to get used to how responsive it is.

The grips for the handrims are comfortable and easy to use. I know this will ease some of my wrist problems.

I sit up straight in it, definitely better posture. I feel good, and feel like I look good.

So it looks like it will improve if not fix my problems with wrist and cervical vertigo, and that’s wonderful!

The foot pedals flip inwards and outwards, so I’ll be able to get them off easier when I load into the car, and they are very light weight.

The front wheels are little, so they don’t hit my feet as they turn.

The back wheels are narrow, but at high pressure, so the ride is comfortable but I shouldn’t get flats easily.

And the brakes are so tight when they are on, and easy to put on and won’t fail me if I get a flat. I really like them and hope everything works out with them.

In fact there are only 2 things I don’t like- the color of the spokes (which is my own fault) and that the arms are heavy. They use metal in some parts where they could use plastic. I’m sure it helps durability, but it unfortunately increases weight.

So, when I get my second set of wheels I’ll get black spokes and puncture proof tires, mainly for travel. If the yellow starts to get to me too much, I can switch the tires for the 2 sets of wheels. And the arms? I’ll get used to them, with only one part heavier than what I’m used to it won’t make the chair feel too heavy. Overall this chair is lighter. I wonder how much?

The story is not totally over yet, not until I can put the chair into my car’s ChairTopper. But I suppose there’s also some small sadness that the story is almost over. It took 5 months to get to this point, though almost 2 months was because I was waiting for the Ablities Expo. I think one could reasonably get a wheelchair in 3 months when dealing with Mobility Solutions, my insurance and Tilite wheelchairs. And that’s not too bad.

I really wish I could be sitting in that chair now.

Chair Arrived!

My chair and the brakes arrived at the medical supply shop today. I have an appointment for Monday at 12:30 to pick it up and get it adjusted. Everyone wish me luck that everything will be as I ordered, and that I ordered the right stuff! If all goes well, Monday I’m celebrating! All won’t be perfect yet, still an appointment with the car folk to fit the ChairTopper to the new chair, but I think that will be a rather routine appointment. Till that happens I might only be able to use my new chair at home. All the same, it will be so cool.

Wheelchair and grandparents

I have no idea what’s happening with my wheelchair brake locks at this point. No one bothers to fill me in, and if I don’t call the medical supply shop then I don’t know. I didn’t call in today. Even if I call things are not always clear.

I went to bed on Wednesday feeling pretty good about the situation. OK, Mobility hadn’t contacted the Locks guy, but since he responded to my email I thought everything was taken care of.

When I checked my email on Thursday morning, I found out that the parts that were ordered were for a different model than the one I was getting and wouldn’t fit. The brakes man was smart enough to NOT just send it along, but couldn’t change the parts he was sending without a changed order from the supply place. I called Mobility right away, and supposedly it was going to be straightened out. But they never called me back, and didn’t call today either.

I’ll call tomorrow to find out:
1 – did my chair arrive, or is it expected today
2 – can I come see it today or Monday
3 – did the whole brakes thing get squared away, and the right part ordered
4 – when they expect those to arrive, if they haven’t already
5 – when can I come in to get it assembled!

I fully expect something to be wrong with the chair. I just hope it’s something that can be easily replaced or fixed. If the frame is the wrong size it will mean sending it back to the factory.

The problem is that the setup of the medical shop is just asking for trouble. It’s like the game of “telephone” that we used to play as kids. You whisper in one person’s ear, who whispers to another, and down the line. By the time it goes around 10 kids it sounds totally different. I fill out a form and give it to the customer service rep in the shop, who hands it over to purchasing. They translate it into one set of codes for insurance (only listing the parts that have a cost to them) and into another set of codes to transmit to the manufacturer. There are at least 2 hands (eyes, brains) who process what I say before the manufacturing people get the request. I wish I could just communicate with the Tilite people directly – but insurance doesn’t like that.

The source of the problem with the locks seems to be that they don’t really have an order form, and that their price list of 2008 doesn’t have the newest model (my model) of chair on it. So, the medical shop just plugged in what they thought was the most similar.

And the problem is compounded by the fact that the Locks shop is so tiny, with only one man to contact, and he travels a lot.

This is terribly boring. I’m just writing down what’s going on. To summarize- more waiting.
I spent the day at home today, not unusual. And on those days, not much happens that I would say are disability connected. Sure there is the extra time to get dressed, perhaps to do other tasks at home. But overall my days at home don’t leave me feeling like my disability shapes my activities or slows me down.

Only one thing reminded me of my disability today, and even that one was as much an aging issue as a disability one. Sometimes these are hard to separate.

I remember as a child that my grandfather (father’s father) used to eat corn on the cob, but only after he scraped every kernel with this sharp fork like instrument. He proceeded to eat the corn more or less sucking out the insides of each kernel and leaving the skins behind attached to the husk. I thought it was disgusting, not to mention a ridiculous way to eat corn! But today, after having corn on the cob for dinner yesterday, I have wondered if I’m headed down the same path as my grandfather, and I believe my father as well.

I’ve inherited other things from Poppop as well – low blood pressure, bad hearing. He lived to age 86, pretty respectable I say, but in the end he had a host of digestive problems. My understanding from the last time I talked to my father, was that he has digestive problems now too. Dad’s hearing is really poor also. He needed a hearing aid 10 years ago at least, but never got one. Poppop did get a hearing aid, but hated it.

This year I’ll get my hearing tested again, which I’ve done every 2 years since 2002, when I first started noticing difficulty hearing in conference rooms. My hearing has stayed about the same, just borderline where a hearing aid might help. If it gets any worse, I’ll give them a try. I don’t know my father’s reasons for not giving them a try – vanity or money or both. Technology has gotten so much better than the days my grandfather tried them (early 1980s) and I have no vanity in this regard.

My blood pressure has always been low. Actually as I’ve gotten older it’s gone up a bit, and I’m more comfortable. Still, if I have lunch out, have to push myself to the car, and get in a hot car, 9 times out of 10 I’ll be too lightheaded to drive for 15 minutes till the car cools down and I get acclimated. One day recently I was feeling so draggy, so got out the cuff at home – 80/55. Luckily it was evening, so I went to bed, and felt better the next morning.

Today though, it’s the corn that’s been disturbing me, making me uncomfortable. I don’t know if my grandfather or even my father had irritable bowel syndrome or diverticulosis like I do, but I suspect Poppop did. My dad just complains of indigestion, and has a history of stomach ulcers. I believe we’ve all had hemorrhoids too.

I think the disability difference is not the cause of the discomfort, but the way it shows in symptoms, and perhaps I am lucky in this regard. Instead of pain, I’ve been having episodes of mild autonomic dysreflexia on and off all day. I can feel my blood pressure rise, with a mild sweatiness around midchest and a mild headache. It’s uncomfortable, but not painful, and so not dangerous. It’s just a reminder that corn on the cob should follow nuts in the list of ‘foods to eat in small quantities”. I can handle this. My body is getting older and can’t handle all the same foods. The symptoms are different, but all the same, my family heritage is asserting itself.

I was very fond of Poppop and Grandmom, and have wonderful memories of them both. Grandmom was a birder, and knew all the birds that came to her backyard. She would sit at her kitchen window playing cards (solitaire mostly) and watching the birds out back. She never worked at a job, and never learned to drive, but she was always busy and knew everyone in the neighborhood. In summer they would hang their laundry out in the backyards. In winter it hung in the basement, till one day they finally got a dryer. Poppop went to a trade school and was a factory foreman. In his heart he was a tinkerer, and would have made a fine engineer. But I think he was happy with his life. He was brought up Mennonite, the 8th and youngest child in the family, and his father died when he was young. His mother owned and ran a hotel and all the kids had duties related to the hotel’s running. Compared to the rest of his family, he was more educated (due to a scholarship) and did well. In the summer he had the most amazing vegetable garden – lettuces, carrots, beets, beans, corn, squash, tomatoes. The things you remember – he was immune to poison ivy, and no one could beat him at darts or quoits.

Their house was in the suburbs of Philadelphia, about a 45 minute drive away, so we didn’t see them very frequently, but on most holidays and birthdays. In summer we might spend a week there. I loved spending time with them. Their house was small and cramped, with one bedroom and no way to escape hearing Poppop’s snoring, but overall it was calmer and happier than my own home. I mention them not just because of the corn today, but because I’m working up to talking about parenting, and in some ways my grandparents were role models for me, especially my grandmother. My mother might not like to hear this, but when I think about how I was as a parent, it’s more like Grandmom than Mom. These days, my personality seems more similar to my mother’s, and even our activities and interests now are more alike. But from the parenting years, I took more from Grandmom.

what's going on

The ETA for my wheelchair was supposed to be yesterday. However it is apparently being shipped from Washington State today, so really should arrive around the end of this week. Perhaps ETA was really ETC – estimated time of completion? This is still pretty good I think. The frame has to be custom built then painted, not all the parts are premade. Putting a chair together is more than just assembly. I think a 3 week order to arrival time is pretty decent.

The brakes (wheel locks) were still an unknown till an hour ago. The company that makes them is local, but is pretty much a one man shop. Maybe he has some assistants that help him build the locks, but he answers the phone, does the orders etc. all by himself. If he’s out of town, jobs lag behind. I don’t think the order for the brakes was really put in 3 weeks ago when the chair was ordered. So, now Mobility Solutions has been trying to reach him by phone (they say), and haven’t gotten a call back. I thought he might be traveling somewhere, which meant that he might not be checking for phone messages, but he might answer email. Last time when I had a question for him, I emailed him and he replied right away that he was out of town (at an East Coast Abilities Expo) and he’d call as soon as he got back – and he did. He was very personable and helpful. So, around 5 PM after Mobility had had the full day to wait for a call back, I sent an email directly. And an hour ago he replied – he had the order, would ship it tomorrow to arrive Thurs or Friday and no one from Mobility had tried to contact him by email or phone. So, what gives here?

Now it seems everything will be at Mobility by the end of the week, maybe I’ll get in there early next week for adjustments and have it home a week from now!

+_+_+_+_

My wrist has bounced back much faster this time. Either it really is somewhat healed, or I’m getting better at knowing how to rest it.

+_+_+_+_

San Diego Opera called today to say our Renewal Deadline has been extended. I said we weren’t going to renew and they wanted to know why. So I told them their wheelchair seating at the Civic Center sucks, in so many words. I found out something interesting. Apparently, the wheelchair seating at the back of the Dress Circle and the Mezzanine, used to be the Standing Room area. When they had to comply with the ADA, that was the best they could come up with – giving wheelchairs the area that was only good enough for Standing room. Groan. I asked the woman who called if she would be happy if those were the only seats she could have, and she conceded “No”. I considered going to Avenue Q this summer. I saw it a couple of years ago at the Spreckels (I think it was the Spreckels, some theater downtown) and I loved it. But this time it’s at the Civic Theater, where the opera is. The last row of the Dress Circle for Ave Q, the Standing Room area that was, tickets are $90 each. Jim can’t go, and I just can’t see dragging any of my friends to sit in that back row and watch a show with binoculars. My son David got tickets, granted with a Qualcomm discount, in the 10th row for about $90. I really am thinking of filing an ADA complaint, though technically I should write to the city about the Civic Theater first.

+_+_+_+_

To anyone who gets electricity from SDG&E and has a disability or uses some medical device that needs electricity – do you know about the Medical Baseline Adjustment you can get? To see if this applies to you, check out: http://www.sdge.com/documents/customer/baselineapplication.pdf

I wonder how many thousands of dollars I’ve given SDG&E that I didn’t have to. Apparently rehab centers here tell people they can get this discount. Perhaps every person I know with a disability in San Diego has gotten this and assumed I did too, but I had never heard of it till recently, and never thought to ask. I don’t know when the discount started (with the ADA?), but I’ve lived in San Diego from 1979 – 1995 and 2004 till present. Maybe this isn’t fair to everyone else without a disability, but I am going to take advantage of this now. I won’t try to recoup lost money, probably couldn’t anyway.

I wonder if they had this discount in Maryland and Ohio too? Better for me not to know.

+_+_+_+_

It is clear to me now, that my trying to write to my father was getting me down. My siblings no doubt will wonder why I let him bug me. They seem better able than I to dismiss him out of their lives. I can’t help it though. There was once a time when I thought he was so wonderful, and I was proud of him. Now, it’s just so hard to find anything in him worth knowing. He’s still alive, I assume, though I don’t know for sure. I trust that his wife would let one of us know if he died, but that trust may be misplaced. I don’t think she’s ever contacted any of us directly about anything before. Well, I think she may have called once when she had a solo business trip to San Diego, was that 2005? And they’ve been married since the early 1980s I think. I don’t know what year it was, wasn’t invited to the wedding. I was living in San Diego by then. One direct call in almost 30 years? Not that Dad calls me much, his record is about once every other year lately. If we talk, it’s been because I call him.

I had set a rule to not talk about people who were living in this blog, at least not in negative ways. At the moment I’d say my father is about as good as dead, but I’ll believe he’s alive till informed otherwise. And perhaps one day someone will read this who knows him, or perhaps he’ll even read it himself. (That’s probably some daughterly hope that won’t die popping up, let it go Donna, let it go.) So, I’m going to stop here.

But I have to say one more thing about both my parents really, or about myself in relationship to them.

There are a lot of things I want to talk about related to parenting with a disability. Parenting from a wheelchair brings a lot of challenges, you need to be creative in how you solve things, and make adjustments. I frequently talk in my blog about how things are different for me because of my disability, or of the nuisances that comes with having this equipment. I could, and I might, talk about parenting that way. I believe though that fundamentally parenting with a disability is much like parenting for everyone. It’s a difficult job that most of us are not really trained for. Perhaps those who have a lot of younger siblings that they took care of as children are better prepared. Certainly people who have worked in daycare or studied early childhood development have an edge, though no amount of education prepares you for a crying baby at 3 AM. The job of mom is much the same for all of us – how to keep a baby warm, dry and fed; how to entertain a toddler but keep him out of danger; how to educate a child and help their self-esteem…. All of us will find an age that we feel most comfortable with. Some women love babies, some love teens. I liked the age from 4 – 8, but 8 – 12 was very good too. Old enough to reason, but young enough to still be so fond of their parents. I’m not saying anything new.

Through all of this, we bring our own baggage, what we got from our own parents. And at times it is hard to know whether having a rough time with a particular issue is because of the difficulties solving a problem due to a disability, or because of some issue carried over from our own childhood, or as a third option – from a normal development of our children. An example – when a toddler first really learn to run they often are anxious about separation. I remember David especially having separation anxiety. It was ok for him to leave me, but not for me to leave him. For me, this was compounded on one level by my fear that he would run away from me somewhere that I couldn’t catch him, and on another level by my rather deeper fears of abandonment and feelings of neglect from my early childhood. I didn’t fear that David would abandon me, or that I would neglect him. I feared that he would see me as doing this, no matter what I did. I had vowed not to repeat the mistakes (my interpretation) of my parents, but could I control how he would see my actions?

As I struggle with Father’s Day, and my relationship to my father, it reminds me that the parenting topic is indeed a complicated one. My disability added an extra layer of self-doubt, and it merits attention, another day.

Neglecting something, but what?

I have been neglecting my blog. I know it, and I’m feeling bad about it. I know I have a few followers, and I hope that you aren’t disappointed when you look for a new post for a week and don’t see one. But mostly I feel like I’m neglecting myself.

Right after I write a difficult post, it takes me a few days to be ready to write again. And when I have the makings of a complicated or emotionally loaded topic in my mind, it may take a few days to get it together. Both of these happened last week. The bladder stories was a hard one to write – not for the writing, but for the thinking and emotions with it. Likewise I have been thinking a lot about parenting, but somehow I haven’t been able to write that post. And so nothing else has come out either.

I am also way overdue on 3 long letters I want to write, so had told myself to do those first, because I keep putting them lowest on my priority list. I have to move them up the list, which means other writing goes down lower. One of them is a letter to my father, because of Father’s day coming up. Talk about an emotionally laden exercise. I have just today realized that even if I mailed that letter today, he wouldn’t get it by Father’s day – I don’t know where he is. I assume the letter would be forwarded from his last address, but they only do that for 6 months, right? Last address I had was from last October. It’s possible that the letter would come back.

Plus, I have been socially rather busy, and today I have a head cold and haven’t done a thing that involves brain cells – till this minute. I hope I feel better tomorrow. It’s just a cold, nothing serious.

So, I’ve had a perfect storm of conflicts, resulting in a massive case of inertia. Tough disability topic cooking (parenting), coinciding with other writing projects (letters), including a really emotionally laden on (to my father) which takes me back to parenting! No wonder I’m sick! Well, Jim is sick too, so it’s not psychosomatic. Oh well.

Today was the day my new wheelchair was supposed to arrive. No one called, so I have no idea if it did or not. They never called me back on Friday to say if the brakes were there or on the way. My suspicion is that the brakes never got ordered, but they don’t want to tell me that. I just didn’t feel like dealing with it today, but tomorrow I plan to call and ask some questions. Even if the brakes aren’t there, I’d like to go look at it, make sure everything is right.

Short progress report

Short progress report

I forgot to take medication this morning, and didn’t realize it till about noon, so I suppose my wrist is doing better, or at least doesn’t give me pain while I’m home.

I banged it a couple of days ago on one of the tines in the dishwasher, and oh my god, that hurt! About 30 min later it was ok, or at least I didn’t feel like swearing. Today though, I really think I’ve recovered from my dancing (and dishwasher) mishap. I’m not healed enough to go back to dance class, unless I can rearrange things so that I don’t have partners with no strength.

Anyone local, who is free from 12 – 1 on Tuesdays, interested in dance? Or maybe interested in doing me a favor – as a dance partner? If I find a steady person then I won’t have to rotate around. With one steady person I can communicate what’s hard and avoid getting injured. Let me know.

The locks for my new chair are coming from a different supplier than the chair itself. ETA for the chair is next Monday. I called today to find out if the locks would arrive the same time. Confusion ensued. I suspect the locks haven’t been ordered yet. What were they going to do – wait till the chair got here to order them? I also asked how they handle the lock install, do they have a fitting so we can decide where the lock switch will be? The woman I talked to had no idea. She was supposed to call be back today, but didn’t. I think I’ll check in with her tomorrow.

My chair supposedly arrives next Monday 6/14, but this is how I expect things to pan out:

Chair arrives Wednesday 6/16, because it really was shipped on Monday.

Brakes aren’t ordered, or wrong part is ordered, so when chair arrives Wednesday, they’ll figure it out, and order the right thing.

Luckily brakes are local, so they’ll be there on Friday 6/18. And the shop will call me the following Monday 6/21, to schedule an appointment for install – Thursday 6/24 that week.

Thursday, now we’re at June 24. Chair is ready, but won’t fit in chair topper on car. So, I’ll take it home and can use it at home. Make appointment for June 28 for chair topper appointment. Plus another appointment for some adjustment on the chair about then, for change in foot pedal height, or back height, or slope on seat…..

But this is progress! Can’t get a chair till it arrives. Can’t sit on it till it’s adjusted….

I’m still excited. In 3 months this should all be water under the bridge.

Catheter 101

13 Things They Don’t Teach You in Catheter School-
(or Learning from Experience) Advice to New Users

1. Prescriptions are Needed – The only items that legally requires a prescription, are the catheters themselves. If you could find a corner drug store that sold urologicals the only prescription you would need to buy everything you want, is for the catheters. However, if you have insurance that pays for durable medical supplies, speicifically urologicals, then they may ask for a prescription or letter of medical necessity for everything on your list. And different vendors and different prescription companies handle these orders differently, of course. Some will let you buy a large amount for several months. Others will only sell you one month’s supply at a time.

If you have the one month arrangement, like I do now, then you have to guesstimate how much you will need each month for the next year. Typically I need one of everything (catheter, tubing, night bag, leg bag, straps) each month. But every now and then I have a month that I need 2 or 3 of each. So, I decided I should have a prescription for 2 of everything to be on the safe side, and stock pile the extra.

Usually the vendor won’t let you change quantities from month to month, though they might let you skip a month once in a while (don’t ask about the logic there, I don’t get it). I highly recommend that you know your insurance benefits and who you supplier will be BEFORE you ask your doctor for that prescription. Each year the prescription has to be renewed.

2. Vendors Can Be Hard to Find for Urologicals – especially if you HAVE insurance. I know, that sounds totally backwards, but it’s true. In Maryland I had so much trouble finding a vendor that sold urologicals and took my particular insurance plan, that I gave up and bought things out of pocket. And if you do find one that sells urologicals, they might not sell exactly what you want.

Here the vendor I have is decent – calls to remind me that it’s time for an order, no shipping charges, quick delivery. But I would like one type of reusable straps that last a year, but they won’t provide them for me – because my insurance’s reasonable and customary isn’t high enough to merit them selling it to me! Instead they sent me a substitute which of course didn’t fit because it was made for a legbag made by another company. And though they do sell that item I want in general, they wouldn’t sell it to me for cash either – because they only take customers WITH insurance! OK, I buy those straps out of pocket once a year. It’s easier than finding another vendor.

If you don’t have insurance? Just get the prescription for the catheters, for half a year, or a year, so you don’t have to mess with monthly orders, and find someplace online that sells everything you need. Express Medical is like the Amazon of medical supplies, good prices, super good service.

3. 10 cc not needed – Whatever size catheter you get, it will also have an amount listed for how much water you are supposed to insert into the bulb. But, you don’t have to put as much as they say! All you need is enough, that with a gentle tug of the catheter it won’t pull out. I put 4 – 5 cc into mine, and it holds. I have found that a smaller bulb reduces the amount of irritation in my bladder and also the amount of autonomic dysreflexia.

4. That being said – it is possible to pull a catheter out through your body (urethra, penis, suprapubic channel, whatever!) with a really good tug. I’ve done it twice. One time I was getting into bed and the far end of the catheter had gotten hooked on the far arm of my chair. I got into bed, the catheter stayed in my chair. For a description of the other time, see my blog titled “odds and ends”. Well, my point of view is that this is an argument for a smaller balloon, right? Less damage when it comes through! Others might say it’s an argument for a larger one, to hold better. Well, given what happened with me these 2 times – I’m glad the balloon was SMALL.

But if this does happen to you – don’t panic. You’re not going to hurt yourself really, unless maybe you do it all the time, and then the channel will stretch and you really will need a larger balloon, maybe even a larger catheter. You might bleed a bit right afterwards, just get another catheter in there soon and relax.

5. Hide the legbag – Do everyone a favor and get a legbag you can cover up with your clothing. There are probably hundreds of them out there, all sizes and shapes, made for children and people who drink those BIG GULPS too. The most typical shape is like a narrow hot water bottle, but they come kidney shaped and super long and skinny. You can wear them on your thigh, calf, behind your knee. I even have a tiny one I can tuck inside a bathing suit.

Recently I was at an event where a very nice woman, using a wheelchair, was wearing a lovely red long dress, and under her chair she had hung an overnight urine bag which was half full of urine. You know, we don’t want to know whether you’re drinking enough fluids for a properly diluted urine. I’m all for getting rid of stigma about catheters and lack of bladder control, but it’s one thing to know about it, and another to display it. I didn’t have the opportunity, and don’t know that woman well enough to call her later, but I wanted to say something to her. Did she think we couldn’t see it?

6. Emptying the legbag – Sometimes your legbag gets full, and there’s no accessible bathroom around. I’ve used a fast food drink cup, an old water bottle, or anything at hand to put the urine into, and then dump it someplace out of the way, discretely. And at times when I can’t pour the urine out, I’ve asked my husband and even when they were small – my kids, to dump it for me. The kids will not like this activity, but they’ll do it, and trust me they are better off helping you out and not seeing what could result with an overfilled legbag! More on that in a minute. On rare occasions I’ve even asked perfect strangers to dump a cup of urine out, say in an airplane I’d ask a flight attendant, or in a public bathroom where the stalls are not accessible. People are generally very helpful, and besides – you’ll never see them again!

7. Bladder infections happen, bladder stones and cancer and other nasty things too. Learn to pay attention to how your body feels, and catch when something feels different early. Infections can cause bleeding. And I was even more prone to them when I was intermittent cathing, when more urine would sit in my bladder and the bugs would multiply. So, if you use a foley catheter but it isn’t free flowing all the time, watch even more closely for infection.

8. See the doctor - I’ve written more about bladder infections in “a bladder story”. But the best advice I could give anyone now is that you should have regular annual visits to an urologist. You need it for that annual prescription anyway. But an annual ultrasound and xray of your bladder and kidney is smart as well.

9. Equipment may fail you – Despite that you are using Medical Equipment (capital M, capital E!), that is no guarantee that it will be well made. I bet that half the stuff comes from China. I don’t think I’ve ever had a problem with a catheter itself, but all the other items have failed for me at least once. One legbag, think hot water bottle, had its 2 sides stick together, so it held about 50 cc instead of 500. Not good. The worst problems I ever had were with the overnight bags emptying valves. I’ve seen them put on upside down, and unable to stay locked so that urine just ran right through onto the floor. The first time this happened I was in a hotel, oh how embarrassing to report to housekeeping. After that I checked that valve more carefully, but it happened again at home one time. The valve seemed ok for a couple of days, and then failed me. Big stain on the rug that took 2 cleanings to get out.

10. Leaks between legbag and tubing (or catheter if you don’t use extension tubing) can happen! This refers to what happens when you let your legbag get overfull and don’t empty it fast enough.

I was at Disneyland with my 2 young sons and first husband. They were off to ride Space Mountain, or some other ride that had a huge line. I made the mistake of not emptying my legbag before they saddled me with all the jackets, glasses, hats, drinks and souvenirs. Wheelchair people are talking grocery carts, don’t you know? I couldn’t move, so put most of it on the ground to wait, but still couldn’t leave the stuff there. And I didn’t want to go far anyway, because then they wouldn’t be able to find me. It was a hot day, so to keep cool, I kept drinking some of those drinks, and before I knew it, my legbag was full. Still no family, long line I guess, they’ll be back soon. I’ll be ok, my bladder will fill up a bit too, no big deal. Nope. Instead urine started to leak out between the legbag and the tubing, and soaked my clothes from knee down. I was a smelly mess till my family finally got back and I could head to a bathroom and change clothes. This had never happened before, and never has since either. But the joins between legbag and tubing and catheter, that seem so tight, where nothing ever gets out, aren’t perfectly tight.

The other risk you take with a full legbag is in getting autonomic dysreflexia, which I’m sure I’ve talked about in my blog somewhere, but I’ve lost track. If your bladder is no longer used to stretching, you’ll react faster to bladder pressure, and AD can be life threatening.

11. A Catheter can get pinched – if it gets tucked down between your legs wrong, or your underwear pinches it, or at night if you lay down on top of the catheter. I have this problem most in bed, especially since I’m tired when I arrange myself for the night, and aren’t thinking my best. I hang the overnight bag on the seat of my wheelchair. If I face that side of the bed, it’s easy to drape the catheter straight out from my body, so no weight on it. If I turn away from the edge of the bed, I’ll thread the catheter between my legs rather than put it under me where it will get pinched. If I put it over me, then it’s harder for the urine to flow. Between the legs seems to work ok.

If a catheter gets pinched, you guessed it, you’ll leak around it – from urethra or subrapubic hole or penis. Your clothes will be soiled, or your bed will be wet. On a positive note – I haven’t slept with many men in my life, but in my limited experience not one has had a problem waking up with a little urine on them. They just go wash it off, like my kids pouring out the pitcher, people can get over this. If not, perhaps you don’t want to be in a relationship with them anyway! There are a whole lot worse messes they might have to help you with.

12. If you are one of those people who leaks once in a while – wear pads! Who is going to know? You’re sitting down anyway! Pads, pampers, depends…. Lots of things available. I got used to wearing pampers years ago, before Depends even existed, because when I was intermittent cathing I leaked all the time. It was usually not much, but enough to get me to find a bathroom. It got to where I felt naked when I didn’t wear them. And there are 2 side benefits besides keeping your clothes dry.

The chemicals in those products do keep your skin drier, just like the Pampers’ ads say. This is good for your skin. We run the risk of pressure sores and skin breakdown as it is, but adding urine sitting on your skin for any length of time is not good.

And, keeping your clothes dry also keeps the seat you are sitting on dry. I remember one embarrassing time on an airplane when I leaked on my seat, and had to tell the flight attendant so they would take care of it before the next passenger sat down. I am sure flight attendants have seen everything, but it’s embarrassing all the same. At that time I was intermittent cathing, but that incident started my policy of wearing a foley and legbag for all flights. You just never know when you might be delayed, and I haven’t seen an accessible bathroom on a plane yet.

13. Last but not least – don’t do stupid things – like forget to close the valve of the legbag after you’ve emptied it – especially when wearing brand new UGG boots! I think that one is self-explanatory, except to say that if you ever make that mistake – just throw the boots away, cleaning them won’t work.


The problem is that being a paraplegic kills any bladder control. The bladder will reflexively spasm when it wants to, and its size will decrease. The condition is called neurogenic bladder. Some medications can help relax the bladder to hold more, but they have irritating side effects like dry mouth, which make you drink even more. For me they don’t work anyway. My bladder gets stretched, yes, and won’t spasm or leak either, but it doesn’t stop the dysreflexia and actually makes that worse. I’d rather have wet clothes.

The purpose of a catheter is to move urine from bladder to toilet, via a legbag, with as little mess, smell or nuisance as possible. Most of the time everything works fine. I’ve used foley and suprapubic catheters exclusively for 15 years, and used them in conjunction with intermittent ones for over 20 years before that. In all that time I’ve probably had no more than a dozen annoying or embarrassing incidents that I hoped no one would ever hear about (not counting bladder infections or the rather routine leaking that occurred when intermittent cathing). That’s about one time every 2 years, so not too bad. Still, on that one day that something does happen, like the day in Disneyland, you can’t imagine a worse day.

Therapy

The first time I saw a psychiatrist was while I was in rehab. I don’t remember much about him, except that he had dark curly hair and I liked to talk to him.

One incident stands out in my mind. I had just been home for the weekend. It must have been about this time of year, June, or perhaps May. I was discharged on July 13, so it was before that. My progress was going well, and if it weren’t for still needing practice with catheterizing myself I might have been discharged in early June. So they allowed, indeed encouraged, me to go home every weekend by the beginning of June. My home wasn’t exactly accessible yet, but by being there it did help my parents to see what I would need.

I don’t remember what happened over that weekend anymore, but whatever it was I was very upset. So, I asked to see the shrink, and was told that he would call me when he had time to see me. He had an office on the floor below the main floor, which had the bedrooms and PT, OT and nurse’s station. Sometimes I would meet with him alone, but often a social worker or nurse or some other person would sit in on the session. That day I specifically asked to meet with him alone.

Later that afternoon, I was called to go to a certain room, but it wasn’t his office. I entered, and the room was a small auditorium. The psychiatrist was sitting near the front of the room, essentially in a small stage area, and the seating area was full of perhaps 40 people. I wouldn’t be surprised if my memory exaggerates this, my image is of 3 rows of people with 10 – 15 each in them. Perhaps it was only 15 total? One thing for certain, it wasn’t a private meeting, and I was confused, hurt and furious all at the same time. The Dr. proceeded to ask me what was wrong, and why I had asked to see him, but I wouldn’t talk. I felt betrayed. He pressured me, and I started to cry. He pushed some more, and I started to yell that this wasn’t what I wanted, that I had asked for a private meeting, that there was no way I was going to talk at that moment. I held my own. And then he turned to talk to the audience, explaining that my outburst was good, healthy and normal, and evidence that I was psychologically strong and going to be ok despite what had happened to me. Then he let me go.

U of Penn’s rehab center is part of their hospital system, and thereby a teaching hospital. Good things and bad to this, you get the newest technology and techniques, but you also often have a crowd around the bedside and have to put up with doctors also being educators. I liked this actually, because when things were explained to the medical students, they were explained to me too. I didn’t like it on that one day.

Later he did call me into his office, and I did get to work out what was on my mind. I point blank refused to be on display again, and he honored that. I continued to like him, but I never quite trusted him totally again. Looking back, I find it interesting that I can’t remember the issues that were so difficult at home that I wanted support for, though I could guess. But I clearly remember that interview. And I believe that it actually was good for me, in an odd kind of way. His assessment was in the main, right! And it was good for me to hear him say that to other people. I was not going to let my injury/disability/victim status make me meek or a pushover. And I am much the same today, in that I pick my battles and strive for what is important to me, not by someone else’s definition of what I should find important.

He was not totally correct though, for some days I feel the scars I have very acutely. I look back at my blog entries and see that they are more about what is hard, different, annoying and just generally negative. My life isn’t all negative, but the way my disability has impacted it feels negative. In fact, I’m hard pressed to find a way that it’s been positive.

Over the years, I have seen 6 different therapists – for all kinds of reasons. Once in college because I was remembering some repressed childhood memories. Once in grad school because a year of group therapy was required to get the PhD. Once was marriage counseling when Ranjan and I had difficulties the first time, around 1989. And once was after Ranjan and I separated, 2001.

The longest stretch was on and off for 10 years with the same psychologist, starting in 1979. I had started grad school in September, and in October Ranjan went to Sri Lanka to be with his parents for a few months. He was going to come back in on a fiancé visa, and in the end he was away for 4 months. I was in a new town, San Diego, with no family, and the only friends I had were the other students I had just met, and Jim – who I knew from MIT but didn’t like much. It was really during that time that Jim and I became friends, though it was years later that we started the relationship that turned into love. That fall of 1979 I was alone for the first time – a single apartment, a car I had just figured out how to manage with my wheelchair, financially independent and responsible. One day I realized that I was afraid to go out at night, or even to open the curtain to look out. My plants needed the morning sun, so I wanted to open the curtain in the living room before going to bed, so that even if I slept late they wouldn’t suffer. But I couldn’t open the curtain, and had a panic attack, and started therapy within a couple of weeks.

The psychiatrist at Penn might have said this was a strength, that I knew I needed help and reached out for it before it was debilitating. Perhaps he’s right, but it was scary all the same. The therapist I found was good for me, and I stayed with her for the better part of 10 years. She’s the one who helped me see that the recurring dreams I had of a cat with a bloody necktie were really out-of-body near-death experiences. She had me draw the image (I still have it) and the dreams stopped.

However, most of the time I was in therapy, with all the various therapists, the topics I worked on were related to my childhood. Like the majority of psych students, I was in grad school to figure out my own dysfunctional family. It wasn’t till I was in therapy after my marriage fell apart, that the therapist and I talked about what diagnosis I should have. I was in therapy then for more situational reasons, to help me get through a bad patch of time. I spent way too much of my time crying and had to find a way through it. But for insurance purposes I had to have a diagnosis, and my quick reaction was anxiety disorder, or something along those lines – that’s what I’d been given before. This therapist suggested post traumatic stress disorder, and after talking about it, we concluded that it fit. There are still some things I do that would qualify for a PTSD symptom. I cannot sleep in a public place for example, and the summer Stephen biked across the country sleeping in public parks caused me no end of anxiety.

The therapist I saw for so many years did say something to the effect that we hadn’t really delved into issues related to the shooting, or my disability. I dismissed her concern, saying that I had that part of my life under control. And then my last therapist in 2001 brought it to the front again, reminding me that I’d heard those words before.

Today I find myself wondering, if perhaps I should be back in therapy one more time. The fact that I need to write these blog notes means something. The good news is that I’m not thinking of therapy because of a panic attack, or waking up crying, or some current event in my life.

For me though, therapy has always been a huge commitment, and makes me moody and hard to be with. Difficult memories would surface, and I’d brood on them all week. If I feel a need to write now, it will double, and the frustration I have when I don’t have time to write will double too. I’ll have even more ‘brain chatter’ when I am trying to fall asleep, and be more likely to ‘sleep in’ till noon. I’m really sleeping till 10 (which is bad enough), but then stay in bed for another hour or 2 to think about my dreams or just stay cocooned in the warm bed, feeling safe, and thinking about whatever comes to mind.

I couldn’t pamper myself like that every day of all the years while I was in therapy! Some of those years I had grad school, and some I had little babies to care for. Some years I was working. I never had a time when I totally shut down, and didn’t do the tasks my life required, but there were times when I would have liked to. And when I could write, brood, sleep in or shut down I did. My life now is more open than it’s ever been. The idea of giving in to that exploration is both appealing and scary.

Where am I now? What do I need?

ups and downs

It’s been a busy week. Here it is Friday night, a quiet evening with Jim at Chess, and I’ve spent most of it paying bills and taking care of household business. It’s just taken me all week to get through this stuff bit by bit.

Granted not all of the activities were ‘work’. This afternoon I spent with friends and went out to a movie.

Low lights:
1 – wrist pain as a result of strain at dance class, but already getting better 3 days later
2 – low sleep as a result of wrist and getting up early for cat medicine, which thankfully is over! Jasper sees the vet next week and then we’ll know for sure if he’s healed ok.
3 – 3 hrs at dealer today to get spring in Chair Topper fixed, and to adjust hand controls, which now make car feel different (I’ll get used to it) Note that it took 6 business days for part to arrive. I’ll have to go back again with the new wheelchair to make sure it fits up there too, could need adjustment
4 – an awful lot of bills and paperwork to do, including form for Jim’s unclaimed CA funds
5 – hair cut and color appointment – as much as I love the woman who cuts my hair, I hate those 2 hour appointments, but I like the way I look

High lights;
1 – Padres won on Monday, and fireworks!
2 – Humane Society gave me a new project to do, organizing the photos for their Calendar contest
3 – 20+ of our favorite vacation photos are up on the walls, looking beautiful
4 – talked to Stephen on the phone one night
5 – saw the movie Babies, very cute and enjoyed being with friends
6 – knowing new wheelchair is being made, to arrive June 14, can’t believe it
7 – last but not least, a thank you to AARP’s magazine for the website – www.disableddiscounts.com . AARP has come through with some interesting money saving tips before, and their notes about this site interested me. There’s a fee, $25 for their service, which initially made me skeptical. But I do trust AARP to some degree, so I signed up. There may not be much on the site that will apply to me, but I’ve already found one hit that will more than pay for that $25 fee. Apparently SDG&E has a program for an increased medical baseline due to medical conditions, and paraplegia is on the list. Living near the coast this isn’t quite the issue it would be inland, but I could save some money. And I know others who would definitely save money. More later, once I’ve gone through the whole website.


And that was my week! In the balance, busy, but not bad.

Wheelchair Dancing

FLASH BULLETIN – THIS NEWS JUST IN! The ETA of my new chair is June 14! Don’t expect to see me in the new chair that night though. Some modifications will have to be done to it, then I have to see if it fits in my Chair Topper ok, might need a modification there too. But hopefully by the end of the month.


I was never much of a dancer. As a young child I preferred school and reading, summer art classes or math classes, even playing music over sports or dance. As a teen I liked rock and roll like most girls, but I really liked square dancing and folk dancing most. During the summer, when the nights were warm, a large group of people would gather in the large courtyard of the Philadelphia Art Museum. Everyone would get into a large circle, holding hands, and then an announcer would start the music and call out instructions. Every other person would go one direction, and their partners would go the other. It had to be several hundred people. I was allowed to go with friends once in a while, if their parents were going too. It was exhilarating to be in such a crowd, with the music so exotic. I believe the folk dances were from all over the world. I’d be with my friend, then we’d go different directions, and wonder when we’d get back together again. Sadly, one year a young couple was attacked by a gang right after a summer folk dance, the young woman was raped and murdered while her boyfriend was forced to watch. And so the dances were discontinued. There wasn’t enough security, or a good way to provide it in such an open space.

I also liked square dancing. As a family we’d occasionally go on a summer vacation someplace like West Virginia, and stay at a lodge that would have square dancing. This was harder than the folk dancing, more complicated, but not impossible to learn. It wasn’t out in the open, like the folk dancing, but set up in barns or lodges.

In 7th and 8th grades the girls at my school (a small private girls’ school in Chestnut Hill Philadelphia) would be invited along with students from other local private schools, to attend dance classes at our nearby Cricket Club. The dances learned were things like the waltz and fox trot. I liked these too, but my interest then was more towards getting to know the boys than the dances themselves.

All of these experiences were pre-injury for me. Not long after my injury my class had its Junior Prom. I asked a childhood friend of mine to go (remember that I went to a girls’ school, so we all had to find our own dates) and I enticed him not by saying he and I would have fun together, and certainly not with the idea of dancing with me – but by saying he would meet other girls. I didn’t go to the Senior Prom.

I’d go to dance parties in college, but I stayed in the sidelines, even for something as free form as rock and roll, and no one tried to nudge me out of it too hard. I’m sure the words “leave me alone” were written on my forehead. Sometimes I’d help with serving drinks or taking tickets. I liked being there and was cheerful and happy, but didn’t feel comfortable wiggling my body around in ways that felt uncoordinated to me. I was pretty self conscious about my body pre-injury as it was, must be why I liked the dances with specific steps and rules, and it was only worse later.

In grad school I remember one painful experience of going to a bar with a dance floor in around 1980, with some grad school friends. My first husband, then fiancé, was out of the country for 4 months and I had just started grad school and was trying a) not to be lonely and b) to make friends. I tagged along with this friend who wanted to go dancing. Honestly, I think she wanted a “home base” so that if she didn’t dance, she’d have company (me) and if she did she’d have an excuse to drop someone because she had to get back to her friend (me). It was assumed I wouldn’t dance. So, while she was dancing one time, and I’m sitting alone, a man came over to talk to me. OK, I’m flattered, and then he said, “You’re too pretty to be in a wheelchair.” This of course took a couple of tries to get across, noisy room and all, and I was pretty surprised (or why else would I remember this 30 years later). We talked a bit, about why I was in my wheelchair, and it was ok. He wasn’t creepy. And my friend did come back. But, it was the last time I went to a bar like that, meaning going to a bar either with the intention myself or the intention of others with me, to be looking for a pickup. In fact I’ve been to very few dances other than weddings since.

So, it was with some reserve that I allowed a friend of mine who uses a wheelchair to talk me into going to some wheelchair ballroom dancing classes. And though they haven’t been perfect, I have found that they’ve been enjoyable – most of the time. I have to qualify this, because yesterday’s class has to be my last one for a while. I hurt my wrist during the class, and with the class set up as it is, I can’t see how it won’t happen again. That perhaps deserves an explanation – suffice it to say that being a group class it would be hard for me to tailor the movements I do to pamper my wrist and avoid certain movements. Last night I felt like I had set my wrist healing back 2 months, that’s how badly it was hurting. Today I’m doing better, but taking meds, so it’s hard to know how injured I am still. But overall, it’s a fun feeling being out with a partner, moving around the dance floor.

I have to give Beverly Weurding a lot of credit. Only 2 years ago, she conceived of this idea of doing wheelchair dancing, and went looking for a dance instructor. By wheelchair dancing I mean an adapted ballroom or Latin dancing – waltz, foxtrot, rumba, salsa, tango…. Within a year she had found an instructor, a couple of venues, funding and interested participants and volunteer partners. In San Diego, there are now 2 places holding classes once a week, and for anyone who uses a wheelchair it’s FREE, with enough volunteers to go around. That’s pretty amazing, and I give Beverly all the credit.

The classes are in 6 or 8 week sessions, and last year I went to 2 sessions. The first one was so crowded – about 30 wheelchairs with able-bodied partners. I was lucky and got matched up with a very nice gentleman for the whole session. He liked to dance in general and saw an ad in the paper for these classes, and thought it might be a nice thing to do to volunteer as a partner for people in wheelchairs.

This first class was really too many people, and so another venue was found so that 2 months later the wheelchair dancing class was offered at 2 venues, and both classes were less crowded. The second series of classes I attended had about 8 wheelchairs, and so the instruction was better, and instead of having one partner the whole time, we rotated partners about every 5 minutes. We learned the waltz, the rumba, and the cha-cha.

Then I missed a few sessions of classes – because of my wrist, and then because I would miss too many lessons because of the Antarctica trip. A session just started last week, and I attended 2 classes of the 8 scheduled. Perhaps I’ll get back later in the season, but right now I can’t predict. My wrist has to heal again.

I will miss these classes, but at the same time, it isn’t that disappointing either. I will never be athletic, or want to dance competitively. I don’t have a partner to dance with emotionally. What’s left is dancing for exercise and companionship, and that’s enough for me, but not so much I’ll cry if I miss it. It is good exercise – more than you’d expect. You have to hold your arms up perpendicular to your shoulders, for the better part of an hour, and that takes energy. And moving your chair around for that hour lesson is definitely exercise over what I might be doing at home reading or spending time on the computer. I do exercises at home because I have to, not because I enjoy them. So anything that makes exercises more fun is worth doing!

You know, I would really really like to be able to dance, with my own special partner. I watch the couples dancing on the cruise ships, usually there’s a lounge with a swing band playing for an hour before dinner. Often there are 2 or 3 couples who get up on the dance floor and look so beautiful moving around. They look sexy and graceful. I wish I could be them! I think what appeals to me is the idea of a couple – people who know each other, are connected, and can move as one. I’m never going to get this from these dance classes. And I’m never going to get Jim out on a dance floor. I’m not upset with him about this, that’s just who he is, and I knew this way before we married.

Actually just like one might accept Jim for never wanting to dance, it would be good if people could accept the same variety in people with disabilities. Except that for wheelchair users, it’s the reverse – accepting those who want to dance. What if people in wheelchairs could go to dances – in high school, college, bars, weddings, wherever and be asked to dance just like anyone else? Wouldn’t that be wonderful? I think 2 things have to happen first – those in wheelchairs have to have more confidence and self respect, and those who might dance with them have to have a little courage, and be willing to go with the flow and adapt.

You should see the wheelchair dancing. At a demo I went to recently, 3 women danced with the dance teacher (waltz, rumba and salsa), and it really is elegant and beautiful to watch. If you go on the internet and google “wheelchair dancing”, you can see some very amazing teams at international competitions, even doing the tango! Some have pairs of wheelchairs, and not a 1 wheelchair plus 1 able-bodied couple. We’re not there yet, at least not in San Diego, and I suspect not in the US in general. But maybe one day. If you want to see some of the San Diego people try:
http://www.absolutelydancesport.com/page21/page21.html

This blog has been a tough one to write. I think this was draft number 4. I can’t praise Beverly enough, and I think it’s fantastic that she’s done this wonderful thing of bringing dancing to people with wheelchairs in San Diego. I truly hope this movement grows and succeeds. It’s not perfect yet, but I’m sure with time, and the energy of both Beverly and the instructor, William Valencia, eventually they will get everything right. I hate to say anything negative about the classes at all! I’m not sure the class is right for me, in part because I hurt myself yesterday, and in part because I don’t think of myself as a dancer. But it is fun, and I have no doubt it’s good for many people.

Bladder-Wrist-Cars

I wonder if it’s smart to put in my blog when I’m hurting, or not feeling well. A few people have asked me since the recent posting about my bladder, how I’m doing, and it’s nice to know people care! Actually it’s an odd feeling, because these are the kinds of times when I’m not usually likely to tell anyone, except maybe Jim, that I don’t feel right. I’m not used to people knowing about my little aches and pains. However, if I’m going to try to show in my blog what life is like with a disability, well, I need to write things down. This is what my life IS like.

Today I can say that I’m feeling well, as far as my bladder, stomach, and appetite is concerned anyway. Unfortunately, that irritation got replaced today by wrist trouble.

Seriously, I feel healthy again. My bladder washing worked – as it usually does. 3 or 4 times a year max I will have an incident like the one last week. I’ll change tubing and drink lots of fluids after wondering whether I have an infection. 1 of those times I won’t feel better and then I’ll take antibiotics. And for the past 4 years at least, I haven’t had to go past that and actually see the urologist for a bladder infection. My annual checkup, and new cipro prescription carries me for a full year. My situation is better than some, who get infections regularly. But on the other hand, I do have those 3 – 4 times a year that I don’t feel well and can’t figure out the cause right away. I’m so used to this pattern, that I forget how odd it might sound to other people.

Unfortunately I only had one day of feeling good. And yesterday was a great day – we went to the Padre game and saw them score a record 18 runs, and saw fireworks as well! OK, I don’t feel sick any more, I feel injured again. I won’t go into the whole long story today, I will reserve it for tomorrow when I have more time to write. And I need the night to think about this topic anyway. Suffice it to say, that I overdid it at my wheelchair dance class today, and my wrist is feeling like it did 2 months ago when I was sure I was headed to surgery. I’m quite irritated at the moment, and ready to cast blame everywhere (including myself I will add). Tomorrow I hope I’ll have a more level head about it all. I also hope that I’ll wake up feeling less pain.

*****************************

I do have one story that I wanted to add to the earlier post about cars.

I asked my 25 year old son, David, how many cars he’s driven in his lifetime. At first he was a bit exasperated with me, but then he started to count – dr ed, 2 as a teen, 2 of mine, Dad’s, Jim’s, Aunt Baba’s, Connie’s, Stephen’s, 2 he’s owned in SD, Amy’s, a couple of friends when he was the designated driver, then a few rentals – Seattle, OR, Wisconsin twice, and then he trailed off- and said 20 – 25 maybe, why, Mom?

I told him I had only driven 10 total in my life.

To which he said, “But Mom, it’s different for you!”

To which I replied, “Precisely, that’s my point, it’s different for me.”

Jim travels for work, probably about one trip a month, and most of those trips he rents a car. He’s also our driver if we get a car while on vacation. So, overall he drives about 12 cars a year, and over his lifetime it’s up in the 100s. I know I shouldn’t think about a comparison with Jim, he has been in many more cars than the average American.

That’s why I had compared myself to a 25 year old. David may be higher than the average person his age, he’s rented cars after all, which isn’t easy to do before you are 25 in most states. And he’s been the exclusive driver of 4 cars already, which is high too.

I was the exclusive driver of 6 of the cars I drove, which isn’t really crazy. It means changing cars about every 6 years average, which isn’t bad. It’s the ability to drive rentals and other people’s cars that makes the difference. And I’m sure for many this is a minor issue. But think about this the next time you get a loner car when your car is in the shop, or when you swap cars with your spouse one day, or your friend was supposed to be the driver but got drunk and so you need to get you both home. Think how easily you just slip into another car without thinking. And think what you learn about each of these cars even just by being a passenger. That’s the difference for me.

Tomorrow: wheelchair ballroom dancing