Chess Widow

It’s Friday night, and I’m a chess widow. I kind of like this actually. The week is over, and I get a quiet night to myself. Even though I don’t work outside the house, I do work in one way or another all week, and Fridays for me are like Fridays for so many – that ‘ah’ feeling that the week is over, and the weekend is here. So, when Jim goes off to chess, I have a quiet evening to myself to read, or watch a chick flick, or to write. I could go out, sure, I even sometimes hear of others who are alone on Fridays on a regular basis. But, I’m introverted and recharge myself when alone. Well, alone with 4 cats.

Sometimes I look forward to Jim being out of town on business for the same reasons. It isn’t that I can’t wait to have him leave, it’s that I like my own time in the evening once in a while too.

Earlier today I was really looking forward to a long evening for writing, but it’s not been an easy day, and unfortunately that’s meant my energy level is lower than optimal for getting words together in an interesting essay. In fact I’d even say that some things have me feeling rather depressed. I almost hate to say that, for I suspect a few of my friends will be checking in on me in the near future to see if I’m ok. Well, that’s what friends do, I know. And I do appreciate their concern. I don’t want to stop writing because of how others will react. And I’m not saying leave me alone. But don’t worry about me, I basically am ok, just having a low day.

Here’s why:
My wrist is hurting again, enough that I’m taking anti-inflammatories again round the clock. It seems to be worst at night, so I’m wearing a brace as long as I can stand it when I sleep. It is pinchy and if I wake up because of a jab of pain, I become more aware of the other pinchiness of the brace and yank it off. The pain is a little different this time, sharp jabs of pain from time to time – more at night than when I’m awake. Before it was mostly when I bend the wrist this way or that, and now it seems to happen for no reason. I’m pretty close to going back to the doctor again. It is in the same location, I’m sure it’s the same tendon. I have to face the idea that my wrist pain is never going to totally go away on its own. And that means surgery. I was so optimistic before. The worst part though, is that from time to time, my left wrist hurts too. This is definitely a repetitive activity problem. Surgery – groan - if I have to rest my wrist that’ll mean staying in bed, lying down, unless someone rolls me over! I can’t even sit up without pushing down on my hands. The only thing that will get me through it, is that I’ll know it’s temporary.

I was doing a lot of cooking today, getting ready for a dinner party we’re having on Sunday – and I found myself wondering how much longer I’ll be able to do all this cooking. I made a vanilla bean panna cotta, which is wonderful, but means lifting a pot with 5 cups of hot cream and milk and pouring it carefully through a strainer into another bowl. Well, I cheated and used a ladle. I’ve already stopped making apple cake unless someone else is home to put it in and out of the oven. I used to be able to balance a cookie sheet with a heavy cake centered on it, in and out of the oven, with one hand, while my other hand held me safe in the chair. Probably explains why my wrists are vulnerable now.

[An aside about my apple cake -I got the recipe when I was a teenager. I think my friend had clipped it from a newspaper, and later I adapted it to an angel food pan. I've made it so many times I could make it in my sleep, though these days it's so heavy I need someone else home to get it out of the oven. Been my kids' favorite their whole life. When Stephen was a freshman at Berkeley living in the dorms, they would send out newsletters to parents, and one time they asked for recipes for favorite foods from home, that they would serve on a special "home cooked foods" night in the dining hall. My apple cake won for the dessert category. Stephen was very proud, though he did say it wasn't quite like mine.]

I’m still having problems with my chair making clicking noises. I really should be keeping notes on all the chair stuff. One day I’ll summarize all the hassles of getting a new chair and it’ll show that AFTER the chair arrives there can be months of adjustments. As of now I still have a not quite explained noise that appeared when I swapped my solid and pneumatic tires. I’ve put together pieces made by several different companies, and there’s a little bit of finger pointing going on. At this point, several visits and phone calls since the noise started, the best theory is that the handrims are not tight onto the wheel, or that the wheel lost it’s true when the solids were taken off of it, resulting in a poor fit between rim and wheel. I have an appointment on Monday to try some experiments, and should be able to figure this out then. Next step is shipping the whole wheel back to Arizona where the handrims were made to let the manufacturer try to solve this.

Last week was hot, and I really don’t do heat well. If I didn’t have AC I don’t know how I’d stand anything over 80 degrees. And this house is the pits! I’ve spent a lot of time trying to figure out why it won’t cool down. I know there are lots of reasons – too many halogen lights and electronic equipment, no heat blocking shades on 2 windows facing east, concrete right up to the sides of the house, raised ceilings - but last night when it was 60 degrees out, and all the windows were open, why couldn’t the thermostat in the house go below 77? I think the main problem with the house is the slate tiles on the sides of the house. They retain heat from the sun. Doesn’t help in winter, because there’s less sun! The slates look good, but when they start to fall off, they are getting removed, not replaced, and the whole house gets restuccoed. Maybe the main problem is that I hate the idea of air conditioning when it’s cool outside, and I don’t like spending the money on AC.

Today has been a rough day, mostly because I got off to a bad start. Vertigo was back, I assume I just slept wrong – too much on my left side. Maybe one cat was up against me and I leaned my head back too far. Who knows? It totally messed up my morning, so that I didn’t get out to do the chores I wanted to. They’ll keep till tomorrow. It’s ok, it’s ok.

This should be my mantra – it’s ok, it’s ok.

Really there are some good things going on too. Had a lovely dinner out with a friend on Tuesday. We’re going to make this a regular plan every couple of months.

No harm done in my fall almost 3 weeks ago. The tender spots on my head and shoulder are long gone. And for the vertigo I’m having now, the stretches really help. It was hard going at first this morning, getting dressed, tending to my cats, but once I was able to get my neck stretched out I felt much better.

The house painting is done, not the driveway yet, but the house anyway looks good. The gardeners were here Thursday so actually the house and yard look good enough to show off to company this weekend! That always makes me happy, when the house looks pretty, not showing off I mean. It makes me cheer up just to sit outside on the patio and watch the birds in the fountain taking a bath. And the weather has been cooler, so I have been outside more. Even my tomatoes are looking better!

Jim and I saw one play last weekend, and will see another this weekend – it’s summer! Outdoor Shakespeare festival at the Old Globe! Lots of fun things to do in summer. And we’re planning a trip for October too – my writing workshop and a few days in Napa.

I’ve been reading a lot – some for book club, but other books too. The last one was called Still Alice by Lisa Genova, about a woman getting early onset Alzheimer’s. I wouldn’t call it great writing exactly, but I liked it overall. Easy summer reading, even if the subject is a bit sobering. I hope I don’t get Alzheimer’s! I have enough issues going on for anyone helping take care of me in my old age.

In fact the only thing I don’t seem to be doing as much of as I’d like is writing, and that’s a complicated topic. I haven’t abandoned the idea of writing, obviously, since I’m writing today. I’ll just call it summer slump.

I’ll end with saying that I have really good friends. I’ve been thinking about this a lot lately. I’ve never been outgoing, which isn’t the same as being shy or reclusive. I just don’t party much or make friends easily. I like doing things with one person at a time over groups in general. 6 years ago I moved back to San Diego, knowing only 5 people (or couples) from living here from 1979 - 95. Of those 5 only 2 are still friends now. (OK, here’s the skinny on the other 3 – one moved away, one essentially rejected me if I put it simply, and 1 I stopped calling because the relationship was SO onesided). But these days I feel like I have lots of friends and am possibly the most social I’ve been in my life! Maybe it’s because my friends are now my own, not related to kid-centered activities. Maybe it’s because I know more people who are home in the daytime too. And maybe I’m more willing to try to get to know strangers and be social. Maybe it’s because I’m a happier person married to Jim than I was before, and other people see that. But whatever the reason(s), I like the feeling, and I’m grateful – not to the people who are “friending” me, because I assume they aren’t my friends out of pity, but because they like me – but I am grateful to be in the right place at the right time, where I have found people whose company I enjoy. The social scene for people with disabilities is not always easy. Homes are hard to get into. Hugs are awkward. Bladder and bowel issues are embarrassing, so intimacy is complicated. My father once told someone that he didn’t think I’d ever marry. I was 20 then. Maybe some stigmas are dropping, and the best place to start is with the stigma we give ourselves. I’m introverted, but I like having a social life too.

a week's worth of notes

I can’t believe I haven’t put a post in for over a week now. I’m not entirely sure why either. The past 2 weeks have been busy, definitely, but I’m fighting some kind of writer’s block too. All the same, I’ve taken notes and in short form – here are some topics on my mind:

Squeak, squeak, squeak…. After finally having the pneumatics and solid tires swapped onto the other wheels, the solids had a persistent squeak when they rolled over a particular spot on the wheel. I called the place I got the solids (and the wheels they are attached to) and was told that when they had been swapped, probably the mechanic broke the cords inside. So I ordered new solid tires, a tool to help put them on, and spare inner tubes and new spoke protection strips. Waiting several days for the parts to arrive meant living with squeak, squeak, squeak…. Driving me nuts. Can’t put the pneumatic set of wheels on though, cause one of them is flat.

Housing – have lived in about 10 places since becoming a paraplegic. 5 of them were single family houses, and everyone of them needed some kind of changes to make them wheelchair accessible. 4 of those were serious modifications of the bathrooms, but all needed ramps and entry changes. The other 5 places were group living buildings – like apartments or dorms, and needed much less work, though each had some minor adjustments too – higher toilet, small ramp, door off hinges for bathroom. The ADA does a good job for public buildings, but access into homes is still quite limited. Often it’s hard to visit friends, and can influence social lives a lot.

Solid tires fixed. They weren’t broken inside, but the spoke guards were bunching up, and not really needed anyway, so they were taken out. And the flat inner tube was replaced too. Unfortunately though, now the wheels with the pneumatic tires are doing a clack, clack, clack… One wheel is worse than the other. It’s obvious, because if you swap them, the noise goes to the other side. Another week till another appointment.

Spent a day in a hot environment – hot for me that is, it was about 86 degrees at my friend’s house. I felt too warm, and knew it, tried to keep cool by drinking more water. But I don’t do well in heat. My metabolism speeds up and the excess water doesn’t help. I had my first serious IBS episode in a long long time that day after dinner. My body just couldn’t hold anything in, not till it had time to fully cool down.

Last Monday I fell. We were swapping the solid tire/wheel set for the pneumatic set. Jim pops off a wheel, pops on another. He has to hold up the back end of my chair with one hand while he does this. He’s done it before with me in the chair. This time however, his hand slipped, and I went back and down. I fell back almost against a wall, there was one of the wheels leaning against the wall, and my head ended up against that. What hurt most was my shoulder. I didn’t drop hard or hit hard, Jim lowered me down and helped break the fall. It didn’t seem like I was very injured.

Then the next day, Tuesday I had this headache all day, and besides the sensitive spot on my shoulder, I realized I had a sensitive spot on the back of my head too. At 11 PM I realized I was afraid to sleep, this fear of head injury was not leaving me. So we went off to Sharp Hospital to get checked out. It took a little while to get seen, but once back in the ER, they were pretty efficient. I had x-rays of my lungs (not totally sure why) and shoulder, blood work, EKG, Cat-scan of my head. My BP was 72/48 at one point which caused them some concern, but it went up a little later. And I was given a clean bill of health, no head trauma (maybe a slight concussion, maybe just bruised), no broken bones and a prescription for Percocet, and sent home about 3 AM. I took one pill before going to sleep and slept well – till noon – not worrying that I might not wake up!

The next day I took another pill, which made me so sleepy an hour later, that I had to lie down and quickly fell asleep. When I woke up 3 hours later, I was SO nauseous. We had evening plans that got cancelled, because I did not want to be around food, let alone eat anything. Jim went out for saltines, ginger ale and bananas for me. The nausea was worse than the headache by far, so no more pills! And now, 3 days later, the headache is gone, and only one spot on my shoulder is sensitive to pressure.

That’s the details of what happened, I could also write about the experience of it all. It was risky, lazy and stupid of us to swap wheels with me in the chair. Next time I climb onto the bed. Lesson learned. I worried only very briefly about injury below my paralysis line. The good thing about autonomic dysreflexia is that if there’s pain where I can’t feel it, it does make my blood pressure shoot up – and that clearly didn’t happen this time! The way I went down was not likely to hurt my lower body. And I’m so grateful I didn’t hit hard, I could have been seriously hurt – landing on my shoulders and neck like that – spinal cord injury written all over this. Head injuries are scary business! The idea that it might be a couple of days before the damage shows up, is scary. Anyway, I’m fine now, and feel lucky.

Other topics – My neighbors house is cooler than ours. It wasn’t a particularly warm day that I went next door, maybe 74 degrees outside if that much. I had to run the air conditioner to get our house down to 76, and next door where they had no AC, they were 74 inside. I’m convinced that the pretty slate tiles on this house hold in heat. Plus we don’t have any greenery up next to the house, except for 20 or so large plants in pots. No grass or shady trees, or even shrubs next to the house. It’s all concrete patio. This is nice for parties, and doesn’t look horrible because there is the great canyon behind us, and the courtyard full of rose bushes… but it must make the house warmer too. I know the concrete tiles make the attic hot, but our neighbor has those too. We also have a lot of halogen lights, but they aren’t on in the daytime! It’s not unusual for this house to be hotter than it is outside. If I’m home I open the windows and that helps. All the same it is annoying.

Yesterday the driveway was painted. The last owner had painted the concrete a darkish dusty pink, and with time it had faded to a shade that contrasted with the garage doors and house. It was worse after we painted the stucco last year. So, this year as well as painting the trim, fascia and eaves, we decided to paint the driveway and garage floor too. This means that I had to have a day when I didn’t leave the property. The only way for me to get in and out is over the driveway – either pushing myself or in the car. We have no separate sidewalk. What’s interesting is that of the 4 houses I’ve owned – 3 were like this. The driveway was the main walkway for everyone. But if it were unwalkable, other people could come up over grass or dirt. Here Jim can come up a small narrow brick walkway through a big collection of tall juniper bushes. It’s a walkway that no one would know was there unless they were looking for it. 2 points here – when did that happen that houses don’t have pedestrian walkways to their door? And you can have multiple accessible entrances into the house, which is a good idea in case of fire, but if all of them lead to the same driveway, maybe that’s not good enough. I didn’t mind being home all day, I do that a couple of days a week most weeks anyway. It was a small reminder of how access is measured differently from a wheelchair though.

Planning another vacation – a driving vacation. I have a 3 day writing workshop at Esalen in mid October. Jim and I will go up together, and he’ll have free time to go hiking or try their hot springs. Then we’ll continue up to Santa Cruz, then Napa for a few days, see Stephen in Berkeley, and be back for Halloween. It’ll be fun, and of course I now have planning to do – 5 hotels to find for one thing.

I can see themes for all the stuff on my mind this past 10 days – housing in all it’s various forms, wheelchair issues continue, and sensitivity to heat.

2 random thoughts

2 random thoughts for today

1 – I got summoned for jury duty, and this time I’m going to get a permanent exemption. I hate to do it, for reasons I have to think about. Perhaps it’s simply that I hate the thought that my disability makes me unable to do even 2 weeks worth of full time work. I did get on a jury once, so I do know how hard it is for me from experience, not just from guessing. I have 2 difficulties – one is getting there by 8 AM and still getting enough sleep. And the other is related to the locations of the bathrooms. The courtroom I was in had some bathrooms nearby, but they weren’t wheelchair accessible. To get to the accessible ones you had to go down a hallway that was 2 blocks long (I kid you not, there was a bridge in it over a street) to an elevator and then find the way to the bathrooms in the lobby of the building. On break time I did not have even enough time to get to the bathroom and back, let alone use it! So, I limited my beverages and food intake so I wouldn’t have to go. Even using a catheter, you need bathrooms sometimes to empty a legbag. And an IBS flare up would have been horrible. So, they’ll grant me an excuse on medical grounds, but I don’t like it much. I like to think that I’m the kind of person everyone would want on a jury! And if everyone like me found a way out, who’s left?

2 – We had dinner in the Gaslamp District downtown today, and I was noticing how many beggars use wheelchairs. I didn’t count but it was a much higher percentage than you see in the general population. I would even say 25% of the beggars. That deserves its own discussion perhaps, another day. But it reminded of a time when I was 16 years old, in downtown Philadelphia, pushing myself 2 blocks from my dad’s office to a dental appointment. I hadn’t been using a chair very long then, so I was a novice and those old chairs were heavy, so it was slow going. I had a cupholder on my chair and I was carrying a newspaper tucked in next to my hip. A young adult black man – the image in my memory is rather tall, thin, adult but not old, perhaps as old as 30, way older than me – came up to me as I passed and reached his hand out right next to me. I thought he was going to take my newspaper! So, I swatted him away!! Then a group of men started laughing at him (and/or me), I assume they were his friends. Later it occurred to me that he was only reaching out to put money in my cup. There were people in wheelchairs begging for money in the 70s just as there are people begging now. I had never been part of a group that took handouts, and it had never occurred to me that anyone might see me that way. I guess a girl in a chair is a girl in a chair. Back then I had a lot of trouble knowing how to behave when around one of these street people – do I nod or say hello, or do I ignore and move on. Now, well, it depends on where I am. In Berkeley there are just so many street people that the only way to tolerate them is to ignore them one and all it seems. They are quite pushy there. But in San Diego (maybe because we have fewer that seem deranged), I find it doesn’t really hurt anyone to say hello, and acknowledge a small type of brotherhood, they might not get my dollar, but friendliness is good for us all. Besides, once in a while I find myself thinking, that “there but for the grace of God, go I”.

Back in the Saddle Again

I guess I’ve taken a 3 week vacation from writing. I didn’t intend to, and didn’t realize till today how long it’s been since I last wrote an entry. I’ve been struggling a lot with understanding why I’m writing, who I want to write for, what I want to say in general. And my writing has been bringing up old memories and feelings as well, that I’ve wanted to focus on. About the time I stopped writing I had realized that it would help me to go back into therapy again, but I wasn’t quite ready to bring that up to Jim, my husband – and so that was another issue to think about.

So, what I did do during these last few weeks was to write down a topic heading, say …. IF I had written that day…. What would my topic have been? And for my own note taking, to also jot down what else I did that day.

So – just to get me current – today I’m going to put out that list of all the topics that were missed! Perhaps at some point I’ll come back to them, probably will actually, but they won’t get their 1200 word treatment today.

1 – A book I’ve been reading – Rise Above by Ralph Braun. It was given to me by a sales guy at the place where my Chair Topper is serviced. I was waiting around, and looked like I needed something “inspirational” to read I guess. This kind of book drives me crazy. The title alone is annoying.

2 – 7/13 was the Anniversary of my going home from rehab – another milestone from 1973 –and the beginning of another phase of changes.

3 – parking issues – oh boy, lots of material here. But one day I parked in a non-handicapped spot because all the H spots were taken, and the store was one I REALLY wanted to go to. The non-H spots were fairly large so I could get out ok, and I took that chance I’d get parked in. Been a LONG time since I did this when out alone.

4 – HOT HOT HOT – I can’t handle the heat at all anymore. AC running non stop

5 – My physical therapist gave her stamp of approval for my new chair. I’m very glad. I do sit up straighter, not perfect, but better.

6 – Wrote a letter to Tilite (the chair manufacturer) complaining about the arms – too heavy, hard to put on and off. Also sent a positive testimonial and photos since they were nice enough to swap out the higher arms for lower ones for free.

7 – another parking day – spent time previewing the area around an event I’ll attend in August, mostly puzzling out parking issues. I know there are people who pre drive a route and check parking when are going someplace new, but I’m not usually one of them!

8 – Got alterations done of several shirts – GREAT IDEA! I think this will change how I shop for clothes. If I like a shirt basically, and the only problem is something like irritating ¾ sleeves – buy it and get it fixed!

9 – My relationship with my Mom has changed a lot over the years, lots to talk about there. Now I’m actually getting along with her the best I ever have.

10 – Blogging, writing, takes a lot of time. After a week it’s clear I have more time, but I miss the writing.

11 – While I get dressed – Jim can feed the cats, make coffee, take a shower and get dressed. If I take a shower before getting dressed, he can also eat breakfast, read the paper and give cats treats. I hate being anywhere before 10:30, because it takes me 2 hours to do my morning routine. I can’t imagine trying to be at work by 9.

12 – Comic-Con – I was too late to get tickets, and I really wanted to go. I found someone who would go with me, to push me about because I know the facility is too big, but I was late getting tickets. Then I found out that whoever is pushing me can get in free! I’m going to go next year.

13 – Allergies! Not disability related, but so annoying! We had a few days of hot weather, and the cats were shedding. I think that’s what messed me up.

14 – Terrible seats in a movie theater, so annoying to be in the back row on the side. I can live with it, but I hate my friends having to give up better seats.

15 – One of my son Stephen’s friends is biking cross – country, like Stephen did 3 years ago. This time I find it more fun to read the blog about it. What an adventure! And when it’s not my kid, I worry less. This is something I will never be able to do, unless it’s by car.

16 – A friend and I are having dinner together in August, my turn to pick a restaurant. We both use wheelchairs. Once again I’m picking someplace partly because of parking. I hate picking some one place over another because of parking! With restaurants there are so many places to choose from it isn’t that big a deal, but I might end up picking a therapist based on parking too. That is more than annoying.

17 – More sleep trouble – cats.

18 – I am a super organized person, always have been, even pre injury. Now though, it does make me feel like I’m more useful that I can help a friend of mine who is moving with my organizational skills, even though I can’t pack and carry boxes for her.

19 – a biggie – wheelchair update. I decided to switch the tires for my 2 sets of wheels. I like the orange spoke wheels with the smooth push rims best – so thought I’d put the pneumatic tires on them, and move the solid tires to the yellow spoke wheels. Things did not go smoothly, and the repair guy punctured one inner tube – so I’m on the solids till new inner tubes are ordered.

20 – running low on gas, had to pump my own (with help from another customer because the push pad was so high up)

21 – I have a 2004 Toyota Avalon, caught in the latest recall for possible breaking in the steering column. I called immediately for an appointment, to be called back and told they didn’t have the parts yet! So, for now, I’m driving around a “risky” vehicle. Not super worried.

22 – I am listening to a book on tape about a high school shooting – why do I end up picking this kind of book? This time I would say I didn’t realize it was about a shooting, I picked the book up because it was the only book on tape by that author, and honestly it’s a good story! But did I read a summary at all before checking the library book out? There must be some reason I gravitate to stories like this, or do I?

23 – really busted tires. I’ve been sitting on the solids for 4 days, and they have a squeak every time I go over a certain spot on the tire. So, I did some research. The tech broke a cable inside the solid tires. They are busted, have to be replaced. I’m not in danger riding on them, but effectively my attempt to swap pneumatic tires and solids has caused me to have busted both sets. Ordered another set of solids, a tool to put them on, new inner tubes and new rim liners to keep spokes from poking the tubes. $103. Meanwhile until supplies come in, I’m sitting on squeaky tires on the yellow rim wheels I don’t like. Sigh.

24 – Somehow I messed up my 3rd toe on my left foot. I have a big scab at the tip of the toe, half under my nail. Where did I bump it? What did I go?

Last but not least, and this does deserve a full paragraph at least, is the topic of therapy. Today I met with the therapist I saw for about 10 years, between 1980 and 1990 approximately. As I was thinking about the idea of therapy, it occurred to me that seeing Melody would be a good first step. My insurance plan is decent. It covers all but $20 a session, with no maximum number of sessions a year. I thought I might see her again, find out what her rates are, and ask her to review the list of therapists who are covered in-network for my insurance. I wasn’t even sure she was doing the kind of therapy I’d be interested in. The last I knew (20 years ago) she was switching to more psychoanalysis. When I found her listed in the yellow pages, I was at the same time both pleased she was still in practice and at the same location, and somehow sad that her life hadn’t taken her on some new journey. Perhaps when you are happy with what you do, then there’s no need to move, huh? For my own sake, I’m glad she is still here – both alive in this world, and in San Diego, and in practice. She said I looked just the same, which I think was just being nice. She looks good, a bit thinner, but healthy, just older. She sounds exactly the same. It felt a bit like going back to see “Mom”, a bit like seeing an old friend to catch up on what was new, and a bit like therapy all in 45 minutes.

But, I still will have to decide whether to see her, or pick someone new. Melody knows me, remembers a lot about me, and there’s some value in that history, though it’s hard to put a dollar value on that. She doesn’t take insurance though, so tomorrow I’ll find out what my insurance pays for out-of-network doctors. Or maybe I’d be better off finding someone new, who doesn’t know me, sort of a clean slate thing, especially if I find someone with more experience with people with disabilities. Does this matter? Tomorrow I do my research, and then I’ll have to decide. Jim’s ok with all of this, though my sense is that it worries him a little. And I admit I hate the idea of a year of therapy costing as much as a good vacation would for both of us.

Right now, my reason for therapy also feels like fluff, an extra – not because of some psychological turmoil, but rather just because I want to understand something. I want to know where this writing is taking me, what it is that is driving me to write, and who I am writing for. And I want a safe place to talk about the emotions that some of my topics bring up. The therapy, the writing, are luxuries I have because I live a rather easy life. I’m not worried about where my next meal is coming from, or how I’m going to pay the rent. I’m not doing this for some eventual money. If I didn’t write I doubt the world would notice or care. And so I feel more guilty about using money selfishly just on myself, when both Jim and I could enjoy it. All the same, something is feeling right about my desire to write about my disability now.

And that’s where I am today.

A bit of Filler?

I don’t really know what to say. I feel like I need to write something, because I know a few people check on my blog on a regular basis. Lately I have simply been so busy, that I can’t seem to carve out the time to write, or when I have a little quiet time I want to just kick back, relax and read. I’ve been reading some good books and blogs lately, perhaps I’ll write about that one day. And my social life has been busier than usual as well. It’s all good, and I’m fine – well mostly fine. Did have that flu a week ago. But generally speaking I’m doing ok.

I suppose I’m taking a break from writing without intending to. Hopefully in the next couple of weeks I’ll get my frame of mind back for writing, and I’ll open up a few hours a day for writing too. I want to! I even think that my not writing makes me grumpy.

So, thank you to anyone who likes my writing and for checking on me. Keep checking back, because I’ll be back – just not sure when exactly at the moment. Tomorrow is Jim’s and my 6th Anniversary, and we’re headed out of town for a night alone (no cats). Sunday is the World Cup. Next week is a busy one. Jim is “out of town” in San Diego meaning at a conference long hours, but coming home to go to bed. This is actually harder on both of us. Instead of just crashing in a hotel room just 5 minutes away from his meetings, he has a commute. And though my schedule is a bit more my own as if he is away, I’ll still be up when he gets up and will find it hard to work late into the night if I want. At least I don’t have to cook dinner! Oh, except for Wednesday when he invited a business friend over for dinner. So, another busy week in other words. Again, it’s all good.

A last note about my new wheelchair – I got the shorter armrests today, so my chair is totally set up as I like it, and my body is adjusting. My fingers aren’t pink and shiny anymore. My transfers are getting smoother, and my new straighter posture isn’t giving me a neck-ache. The second set of wheels is ordered but may take a while to arrive. So, I’m inclined to call it a success and am ready to move on – to buying a new cushion.

Sick

I wish that when I first start feeling sick that I had a better idea of what was going on. I’ll know I’m not feeling well but the feelings are vague and so I have to come up with theories.

Yesterday evening I started feeling chills, and shivering. My body ached and I just didn’t feel well. Took my temperature, and it read 100.3 – not horrible but significant for me. I rarely get fevers.

Theory 1: Bladder infection, kidney infection? The day before I had changed my tubing because my urine had gotten gunky. All seemed well now, but perhaps I hadn’t gotten the new tubing in fast enough, or drunk enough water that day? A low fever might fit with the bladder infection, but chills? And wouldn’t a kidney infection have a higher fever?

Theory 2: Bladder stone? I’ve never had one, so I really should find out what the symptoms are of these. More frequent bladder infections I believe. I noticed that twice recently I’ve leaked into my clothes, not around the suprapubic catheter. I assumed this was because of an infection – and part of why I changed my tubing. Was it instead possible that a stone was blocking the entrance of urine into my catheter? I think maybe it’s time for a visit to my urologist. I’m due this fall for a cystoscopy exam anyway – that’s a look inside the bladder. Of course I could get even more paranoid and worry about bladder cancer too.

Theory 3: Flu? This fits, though I hadn’t been around anyone sick that I knew. I did go to the Fair on Wednesday though.

Theory 4: A combination of a bladder infection and just general soreness from a private dancing lesson earlier that day. A bladder infection could cause the fever, and the dancing caused the soreness. The private dancing lesson is another story – it wasn’t supposed to be me alone, just turned out that way. It was wonderful to have a full hour of time with the instructor because I really felt like I was dancing – almost flying! My new chair is so much easier to twirl. An hour of holding my arms up though, is exercise, and by the end of it I was tired out.

Theory 5: Migraine. I have a history of visual migraines, ditto my brother and father. My oldest son gets and grandmother got the real painful headache type. I’ve never had a headache that I’d classify as migraine strength. But all day yesterday I’d been fighting a headache, especially on the left side. Of course, since reading My Stroke of Insight, I briefly thought about whether I might be having a stroke – but the headache wasn’t particularly severe, and I do get mild headaches from time to time. Can’t a migraine give you other symptoms too? Not sure about fever though.

Two hours later, after rummaging through the cabinets to see if I had enough Cipro to get me through the holiday weekend, and luckily I do, barely – I decided that I might indeed have a bladder infection, but that most likely I have a flu. The reason – I started feeling nauseous, and gassy, and began to worry about vomiting and diarrhea.

So, Jim slept in the guest bedroom, and I laid there alone with an extra T-shirt handy in case of sweaty chills, and a large bowl in case of vomiting, and I snoozed without really sleeping till about 6 AM, when I finally allowed myself to sleep because I thought it unlikely I’d have to run to the toilet. My stomach had settled.

24 hours later, I’m doing better now. My fever was lower in the morning, and is gone now. My stomach is still gassy, but I’m even a little hungry, so I think I’m ok. I had bread and a banana earlier, and so I’m going to try some soup for dinner. I’m lightheaded, possibly just from lying down all day. Still have a mild headache. Less achey. I’ll continue taking the Cipro to be on the safe side, no harm in it. Actually, the word to describe how I feel best is “exhausted”.

Is this how it is with other people? Is it hard for anyone when they get sick, to tell what’s going on? It seems to me that others don’t have this hard a time usually, but not always. Jim recently had a fever and felt ill, and our conclusion the next day was that it was probably allergies. I’m willing to accept that everyone has some difficulty, even with routine ordinary illnesses. I’m grateful (knock on wood) that so far I haven’t had even stranger or long lasting symptoms that end up with a more serious diagnosis. There are so many other things that could make it even harder to sort out what’s going on – MS, rheumatoid arthritis, cancer….

I would even say I’m lucky that all my theories are easy-to-fix things, which makes my concerns feel petty. All the same, I do wish it were easier for me to sort out my body sensations to know what’s up. An able bodied person wouldn’t have this difficulty with differentiating between a flu and a bladder infection. It would hurt to urinate with any type of bladder problem. So, I do think it’s a bit harder for me.

What a bummer to be sick too. I had gotten all the normal chores out of the way, so that we’d have a clear weekend! Well, perhaps by Monday I’ll be able to get out. And it could have been worse. I might have gotten sick next weekend, our wedding anniversary.

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.

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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.