feeling crazy

I am overloaded tonight, feeling like I want to punch someone and exhausted at the same time.

Jim's mom is coming to visit for a week tomorrow, which is good, but there were so many things I wanted to do before she came - that haven't been done. It'll be ok, she'll be understanding when I do some of them while she visits.

Today I picked up our tax papers from the accountant, and there is something puzzling to us, which needs attention, and I just exploded. This is the LAST thing I feel like doing!

Anyway, why this post? I want to do more writing, and it seems that this is the last thing on my list every day. I write when everything else is done, usually in the evening, which most days is fine. Actually I am a night person, so evenings are generally a quieter, more relaxed time for me - but not on days when I don't get the rest of my list done, and not when I'm cramming to get ready for a visitor.

And it doesn't help thatI know that while I have visitors, even ones I am happy to see, that I know I won't be able to write till they have gone home. Again, writing seems to be at the bottom of my priority list. I can't treat it like you would treat someone going to work. Why is that?

So, for a future post, some thought about what this blog and my writing in general is about, is called for.

In the meantime, it is unlikely I'll be posting again till April 6. Please come back.

a special group of friends

I have a lot of friends, some from each segment of my life, and each place that I’ve lived. And these days I have good friends from book club and the neighborhood. But there is one group of friends that I really cherish – my women’s SCI (spinal cord injury) support group.

A bit of background: Way back around 1982 or so, I was in an urologist’s office, probably for a bladder infection or routine visit. Back in those days it was recommended that all paraplegics have an IVP test done once a year to check kidney function (Intra-venous pyelogram, if I remember the acronym right, a truly nasty procedure with dye injected in your veins and serious dry heaves of nausea, while the doctor watches the dye go through your kidneys). These days a yearly kidney ultrasound is ordered instead, and every 5 years a cystoscopy where the urologist looks inside your bladder, and the IVP is thankfully gone from the annual routine. Even before I had the supra-pubic catheter I have now, I was intermittent catheterizing myself every few hours, and it was not unusual to get bladder infections every so often. So, perhaps I was in the office for a bladder infection, perhaps an annual visit.

Ok, I’m in the waiting room of the office, and there’s another woman there in a wheelchair with a 2-year-old girl riding on her foot pedals. I struck up a conversation, saying that I was recently married, and we were thinking about having kids, but I was very anxious about how hard it would be. She invited me to a support group she had started with another woman with a young son, for women with disabilities who had children. Both women are SCI. It was an eye-opening experience for me, not just because of the information I learned about parenting, but also because it was the first time I had really enjoyed socializing with other people with disabilities. And frequently the conversation wasn’t on parenting, but other issues related to our disabilities.

The group got together for several years, and then fell apart when the kids, including mine by then, were school age. But I stayed in touch with a few of the women till I moved east around 1994, and then reconnected with them after moving back to San Diego in 2004.

While living in Maryland I volunteered to answer phones or do filing at the Spinal Cord Injury Hotline, which no longer exists because funding was lost. But while I was there I met several SCI women who filled that void for me. I’ve talked about Jane before, the woman who was shot in her back in a 7-Eleven. I like knowing people I can talk to about disability related issues, from finding a good doctor to picking a wheelchair. I also did a lot of advocacy work in Maryland, on county and state commissions related to parking and building accessibility. And so there I met other people with disabilities too. I’m still in touch with a couple of these friends, but see them seldom now, living 3000 miles away.

About 2 years ago I attended a class at Sharp Rehab for women with disabilities on weight management. I got some useful tips about diet out of the class, and lost 17 pounds, almost all of which I have since gained back because I stopped counting calories. The best thing to come out of that group though, was getting to know 3 other SCI women. And when the class ended, I found myself wishing it wasn’t, so that I could see them more.

I thought again of that earlier support group, and of how much I missed my Maryland support, and wondered if I might find interest to start a new group here. So, I contacted the 2 women I knew from years ago, who I’d been in touch with again, since moving back to San Diego. And I followed up with the 3 I met at Sharp. And one other got pulled in as a friend of a friend. And a new women’s SCI support group was born. In the beginning we met monthly, and had a specified topic each month to start conversation – examples are:
Autonomic Dysreflexia
Medications and Supplements
Exercise
Clothing
Gadgets
Bowel management
Bladder biz
Parenting
Gadgets
Pain Management and Medications
Wheelchairs and Cushions
Aging and Menopause
Travel
Sleep
Universal Design
Adventures Large and Small

Now, 2 years later, we’re just a group of friends, who gets together over lunch every 2 months, no topic needed. One woman has a 2 year old, and can’t attend regularly. Often there’s someone out with a medical reason, most commonly a pressure sore. So, it isn’t unusual for only 3 or 4 to be at our meeting. All the women in the group are intelligent, active people. More importantly, they are generally a positive, problem-solving bunch. No polyanna attitudes (everything is wonderful, let’s all hug), or denial that life is more complicated for us, and no shrinking violets in the group either. We talk about what is going on, and offer suggestions and support.

Today we sat around my back patio table, and it was an absolutely gorgeous sunny comfortable southern CA day. We caught up on news: who was doing work on their house, what the kids were doing over spring break, and what to do when visitors come to town. And we talked about bowel problems, new wheelchairs, and unexplained fevers and pains. We’ll laugh as we talk about colonoscopies, and say where else can we talk like this?

What I got out of today? Besides a lovely 2 hours of chatting with friends, which all alone is good for the soul? Someone suggested I see a rehab doc about my wrist before doing surgery, as a 3rd opinion. Perhaps he’s seen more of this condition in paraplegics, unlike the hand surgeons who see a broader population. Someone else suggested I contact the wheelchair reps about what models I would like to see at the Expo, so that perhaps they’ll bring chairs I can try out. And one more person talked about a tea she drinks when she gets constipated, that keeps her from using strong laxatives. Good advice all around, good friends indeed. I hope what I say is as much help to them, as they are to me, but this needn’t be said out loud. The fact that they keep coming back, says plenty

heading for surgery

My wrist aches, and I’m headed to surgery.

It’s been a long day.

It started with an appointment with a hand surgeon for a second opinion, and ended with a 9:45 dinner. We normally eat around 8:30, and on book club nights, like today, I often eat after the meeting at 9:15. So 9:45 is not perhaps as bad as it sounds.. But I have wanted to put something up on my blog all day, and this is the first chance I’ve had – at 11 PM.

The first hand-doc that I saw said that if the pain came back, it was surgery for me. When I went back the second time complaining of pain, she grudgingly consented to a second cortisone shot instead, only because I was about to go on vacation, saying that that was the last time! And the shot worked! Just like the first time.

But now I can tell that, though I am not in pain in the same way, my problem is not really gone either. My wrist aches. I think today it is especially bad because I asked my PT yesterday to evaluate the way I push my chair, to see if I use my right hand and left hand differently.

We went out in the long hallway of her medical arts building, and I rolled up and down the hall while she watched from the front, from the right, from the left and then from the back. She made some astute observations – I hold my right thumb up while I push and I put my right hand back further than my left as I start into each push. I should let my right thumb rest along the rim as I pull back for the next push, not try to squeeze with the lower part of the thumb joint. I guess I am getting more power this way, but it’s rough on my thumb, and also rough on that tendon. She had me wear a thumb splint to see if it took some pressure off, and it does – but it makes me much slower in pushing. I feel like a pokey old turtle.

Then she watched me transfer in and out of my car. This is my hardest transfer, because I have to use a transfer board. I lost track of how many times I went in and out, holding the board this way and that. She had some good suggestions here as well. All the same, by the end of it all, I felt tired. I can’t say my wrist felt bad then, but all my other muscles were saying, “enough!”

Today, I could feel the effect of all that exercise on my wrist – like I said – it aches. I know in my gut, that my deQuervain’s tendonitis is not going away. It isn’t as bad as it was, but it’s still there, waiting for a good excuse to scream at me again.

And so when the doctor today said that the advice of the other hand surgeon was sound to him, well, I knew. I’m headed for surgery. He said that the fact that the cortisone worked means it’s even more clear to him that surgery is the right choice, and his argument was that I could try other treatments, but in the end he believes I’ll be back. Why go through all that, when surgery is a safe and quick fix?

From my point of view, it’s not urgent. I’m coping. And I couldn’t have it tomorrow if I tried. I think I’ll go back to my original surgeon, for no other reason than I just like her. The man I saw today was good, I am sure of this. I know 3 people who have had surgery or other procedures by him. But I like something of the manner of the first surgeon I saw. She happens to be pregnant, and quite possibly is having a baby as I write this. Wednesday was her last day in the office, and she’s scheduled to be back mid April. I assume this is if everything goes well only. But I can wait.

I made a mid April pre-op appointment, hoping that mid May I can have the surgery done. I am still anxious about how recovery will go for me, but figure I can work out the details later. Both doctors have been reassuring, that I should not be incapacitated for more than a day, even if I feel some discomfort for a month. It’s a very simple procedure apparently. I’m sure it is for almost everyone else! I just wonder how this might be different because of how I use my hands and wrists all day long. Just to get out of bed means weight on my wrist, do they really understand what I mean? Or will this be like the couple on the cruise who didn’t really know what they were in for? Sure they got through it, perhaps none the worse for wear. So perhaps, I am just a worrier.

Jim says he’ll take off that day from work, and probably the next day too. Perhaps I can schedule surgery for a Thursday. That way the office will be open at least 24 hours after it is done, but I can make use of Jim being home on the weekend. I suspect I’ll want his help to get out of bed, possibly to dress too. I’ll plan to stay home for a week, so that the only transfers I have are bed, toilet and shower – not into and out of the car. This means though, that I have to consider his travel schedule too when I arrange the surgery.

That’s how the day started. Not long after I got home, a man came by, that the electrician hired to patch the stucco on my house, where the old electrical panel was removed. His work from 2 days ago failed inspection, so he was here to do it all over again. After looking at his new work, very gingerly I explained to him what I thought the inspector said was wrong, so that he would really do the work right this time. I could see that his second attempt was going to fare like the first with the way he was proceeding. The inspector wrote out very specific detailed instructions, which somehow didn’t translate in this man’s head, into a changed approach. I put my 2 cents in, and then let it go. The workman did change what he was doing based on my comments, but I don’t know if it was enough to pass inspection tomorrow. We’ll just have to see.

What rankles me most about this is that I have to pretend that the inspector is just being fussy (that’s what the electrician and this handyman workman are saying), and that what he is asking is unheard of! Personally, what the inspector said makes total sense to me, and if he’s right I’m avoiding a mold problem by doing as he says.

And it’s annoying me that this process is supposed to happen smoothly even if I’m not home, since it is all outside the house and I don’t have to be home to let someone in. But if I hadn’t been home yesterday when the inspector came, so that I could understand his reasoning, and if I hadn’t been home today when the workman came, to explain the failure, then I’m sure the whole process would take several more days till it got straightened out. As I said, I know it would have failed inspection the second time too.

And so, all afternoon, I was home while the handyman was chipping away, or power sawing away, at the stucco, hammering in new nails and god knows what. I am so eager for this project to be done. The cats and I miss our peace and quiet. I couldn’t think clearly, so found some tasks to do that involved fewer brain cells – laundry and sorting photos.

I had my book club tonight, which I love for several reasons. I love to read, so any opportunity to talk about books is good. But I also really enjoy the women in my group. Jim was working late, then wanted to go to the gym, so he was going to be late coming home anyway. He’s headed out of town tomorrow on an early flight, so he had some things to tie up at work, and he can’t get exercise tomorrow, so it was important he get to it today. We planned dinner for after we both got home, which ended up being a 9:45 dinner. In Buenos Aires that would be no big deal, but here it is considered rather late.

Eating late, dealing with workmen who I think are rather slow thinkers, being busy all day even with noise – none of this is new to me. What made the day long though, was that all through it, I was thinking through my surgery option, or wanting to think through it and finding it hard to do. I suppose I wanted to be alone. I wanted quiet. The introverted side of me was asking for attention.

Do I want to do this? Do I trust these surgeons? Are they right that it won’t come back after the surgery, it’s such a sure thing? What am I doing to cause this in the first place – do I really know? Should I try something less invasive first, like acupuncture, even though I doubt it’ll work?

And – this will be my first optional surgery related to overuse (what I have to assume is the cause, for lack of a better theory) of a body part directly related to my disability. This is worrying me, a lot. Is this the first of many potential problems related to disability and aging? I am feeling old.

The last surgery I had was when my tubes were tied in 1987, when Stephen was born. I could make the argument that that surgery was disability related, because I had it lined up even before I knew whether Stephen would live or die. I knew I could not tolerate pregnancy again, because that second full term pregnancy was pretty hard on my body. I wanted 2 kids, might have considered 3 or 4 before my pregnancy in 1986. But as my pregnancy advanced into the 3rd trimester, it was clear this was the last one for me. Some other day I will tell that story. But since kids themselves were optional, I can’t really call it disability related.

Not counting 1973 when I was shot, I’ve been in hospitals 4 times.
1 – cauterizing some bleeding in my bladder due to a bad infection, 1 night, around 1982.
2 – David’s birth, overnight 2 nights, 1984, smooth and easy
3 – Stephen’s birth and tubal ligation, overnight 1 night, 1987, even easier
4 – broke my knee in 1997, 2 nights because my leg swelled up so much.

Does anesthesia for an outpatient procedure count? Add a colonoscopy and inserting the supra pubic catheter.

I’m hoping that the wrist surgery is more like a colonoscopy, and less like cauterizing my bladder. Supposedly it is outpatient, and recovery is minimal. But I won’t really believe them, till it’s done.

In the meantime, I’ll have to garner up some trust for my doctor, and prepare myself for a rough time. Better to expect to need help, plan for it, and cancel later, than to be surprised. And for right now? Time for a glass of wine! I have just the right Riesling, light and sweet, a happy wine. Donna, relax, it’s going to be ok, just relax.

A Purchase Gone Bad

As I write this today, I’m playing fetch with one of my cats, Fforde. It’s very distracting, but good for my cat, so I continue to play. After about a dozen throws, he will probably tire of the game, and disappear for a cat nap, and then I can concentrate on writing. But when he brings me a mouse to toss, I have to respond! He does not take “no” for an answer.

Jim and I have 4 cats – Jasper and Fforde (named after the author Jasper Fforde, for anyone who is curious), we picked up about 4 years ago. Shakespeare and Marlowe were the 2 that had surgery on their paws, a couple of months ago, and we’ve had them 2 years. They take a lot of my time, and cost me some sleep – literally! Shakes especially has a knack for disturbing my sleep – putting his weight on my stomach eventually wakes me up feeling very uncomfortable, or purring loudly while on the pillow next to my head (or on my hair) as I sleep, or deciding that he wants his brother’s spot on the bed, so consequently biting Marlowe on the neck to get him to move. But overall they are good cats, and I’m fond of them.

Today I’ve been reminding myself about what happened the last time I ordered a new wheelchair. I love the chair I sit in now, an orange Quickie 2. But it was my second choice for a new chair, not my first.

My memory was of first choosing another chair, having some pretty serious problems with it, and then returning it. The way my memory works, I’m very good at remembering an experience, but not necessarily the details. If I see a movie, even just a couple of weeks later, I can’t recall the plot clearly. I might remember where I saw it, who I was with, and whether I liked it, but the story? – poof! Gone!

I know this about myself, so I compensate, and often keep notes tucked away in a file when I think I should try to remember something important. And so, I wondered if maybe I had kept something about that wheelchair fiasco. And indeed, I kept 4 letters on my computer related to the whole incident, and it is a story worth telling, especially to myself, as a warning of how a wheelchair purchase can really go wrong.

In 2000 - 2001 I had physical therapy for some pain, shoulder pain I believe. And like my physical therapist I have these days, my PT then was concerned about my posture. This is a common problem with high level spinal cord injured people. We don’t have trunk muscles to hold our backs really straight. Wheelchairs don’t help, especially folding chairs. By their very folding nature, the back has to be of a flexible material. With age this material stretches and gets even more curved. And folding backs curve in the wrong direction in the lumbar area, absolutely no lumbar support.

Anyway, my memory has been jogged a bit by reading these letters. My PT then convinced me that I should order a new chair to help improve my posture, even though the dark green Quickie 2 I had was only about 3 years old, and in good shape. He didn’t focus on the seat back though, but was impressed with a chair made by another manufacturer that had an adjustable seat height feature, which made the angle of the seat adjustable as a result. The idea being that I could sit up higher and straighter as long as I could, then adjust myself down to be more comfortable when I got tired. Several chairs have something like this now, though I think the mechanism is different. I don’t know, for this isn’t a feature I care about anymore.

In February 2001 I ordered a fancy new chair, all the newest features. It arrived in late April, and immediately it had 6 serious things wrong with it – tires with hard inserts instead of pneumatic ones, the wrong type of wheel locks, push rims that unacceptably hurt my hands, anti-tips (little wheels at the back to keep a chair from flipping over when going up a ramp) that hit the ground on flat ground, push handles so low that only someone 5 foot tall could push me, and a seat that was too long – hitting my knees at the back.

And those were just what I could see on the first day! I sent the chair back for fixes right away. It came back to me one month later with as many fixes as they could do – tires and anti-tips. The push rims still hurt my hands, though they were smoothed out a little. The push handles were higher now, but wobbly. The wheel locks and seat length couldn’t be changed.

But then I realized I had another worse problem. The way the seat height was adjusted was with a large screw-like post under the seat. Turn it one way, the seat goes up. Turn it the other, the seat goes down. The problem was that it couldn’t hold and lock where you set it. I’d turn the seat up, and within 2 hours it would adjust itself, and put me 2 inches lower. After a full day I felt like I was sitting in a bucket.

To wind up a long story:

I owned the chair 6 months.

During that time it was in my possession 87 days, the rest of the time it was out for “repair” – including 4 different times for the seat adjustable feature alone.

I used the chair precisely 7 days, it was that bad. The other 80 days at home it was waiting for pick up for repair.

I documented all the problems in a letter to the medical supply company where I explain why I was returning my chair. All the issues are listed there, and the dates and measurements.

Plus, there is a letter dated 4 days after I returned the chair, that I now find amusing. I refer to a bill they sent me for accessories for the chair – you know, stuff like armrests! I’m going to put that letter at the end of this blog post for anyone curious enough to read. It speaks to some of the problems with our medical insurance and medical supply industries. But for those who don’t want to read it all – my chair had been processed as a rental, in network, as opposed to a purchase. But the options for the chair, like arms, were processed as an out-of-network purchase, and I was being billed for them directly as a result, though my insurance paid 100% of costs in-network. I refused to pay, and never heard from them again.

That was 2001. 9/11 happened during that time, as did my first marriage falling apart. Overall it was a rough year.

I didn’t have the emotional energy to spend on wheelchair research or a purchase until 2 years later. I bought my current chair in Fall of 2003, the same company and model as the green one I had already. For at that time, I was not feeling like experimenting. But I’ve been happy with this chair, till now, when it’s showing its age.

If I seem hesitant about trying something new, I think it’s understandable. A wheelchair is like an extension of your body. If someone bumps against you as they move through a crowded restaurant, you feel it just as if they had hit you on the head or arm. The person who did the bumping doesn’t think of it that way, to them it’s like hitting furniture. But to the person in the wheelchair it feels more personal.

Changing your wheelchair feels risky, a bit scary. A lot of women at some point take some risk with their appearance – dying their hair, plastic surgery, new style of clothes. There’s an element of that in buying a chair too, say in choosing a bright color, or sporty look. But there’s a greater fear that it won’t work, and will even make your life harder, and that you might get stuck with it. Imagine you can only have one pair of shoes - then you’d want them to fit perfectly, not cause you pain, and go with all the clothes in your closet. Though, who has only one pair of shoes? If they cost $4000 - $6000 each, then everyone would.

This time, I am doing my research a little better than last time. Last time I relied more on the impression of my PT of the time, a non-wheelchair user, and I was willing to try a chair that I knew no one who had had experience with. This time, I’ll either get another Quickie to be really safe, or a TiLite. I know 3 people who have TiLites, and like them. Plus, I’ll make sure that either the local rep shows me chairs and features, or I’ll find them at the Abilities Expo. And if I’m lucky I’ll even get to try some of these chairs out, and sit in them before I make up my mind.

XXXXXXXXX Equipment

XXXXXXXXXX Dr.

Baltimore, MD

October 22, 2001

To Whom It May Concern:

This letter is a response to the bill you sent me dated 10/15/01, see copy attached. I believe you are billing me in error for the following 2 reasons.

1. On October 18^th, before I received the bill, I returned the wheelchair and all accessories to XXXXXXX, sales representative, at your Baltimore address. There is a serious design defect in the wheelchair, which causes the seat to slowly sink at the back over a few hours. It had been worked on 4 times and was unfixable. I suggested that XXXXXXX return the chair to the manufacturer, and to let my insurance company know the chair was returned. The accessories you are billing me for were all features attached to the wheelchair, and were consequently returned as well.

2. Even if I had kept the chair, I should not have been billed for those accessories, however. In looking at my EOB from my insurance company, of which a copy is also attached, you will see some odd things. I do not believe they processed your claim correctly. When I called them to say the chair had been returned and ask them how to handle this they said that this was fine by them, since it had been entered as a rental anyway and they expected it to be returned! Actually what happened is that the chair and cushion were treated as a rental, from an in network provider (because you participate with BC/BS of Maryland). But, for some strange reason, all the accessories, which would be useless without the chair in the first place, were handled as purchases from an out of network provider! If this were entered properly, as an in network provider as you clearly are, even on the same EOB paper for the chair, then I would not have a deductible and my insurance would pay 100%. I can't imagine that you sent a claim to them calling the chair a rental, and the accessories a purchase, I believe this is the insurance company's mistake.

I don't think it's worth trying to fix the rental designation of the wheelchair itself, so that the $969.86 they gave for the wheelchair and cushion is yours. The chair should be returned to the manufacturer with a strong complaint. The cushion can be sold as new, since it wasn't used. Regarding the bill for the accessories I believe you have 2 choices. Either you can tell my insurance company that the accessories were returned and take back the bill (my preference), or you can tell my insurance company that you are in network for BC/BS of Maryland, that the claim was processed incorrectly and ask for them to pay more. They will have to zero out the old EOB and reprocess. (I've gone through this before, and because I'm an out of state member this problem happens more frequently than I can stand.) Either way you have to talk to Patient Care Management, which I believe is 1-800-332-2566. I will not pay this bill. I see you as having gotten $969.86 already for nothing gained by me. The whole wheelchair, cushion, accessories have been returned, and are not in my possession.

If any part of this is confusing, feel free to call me for clarification. If you need to verify that the chair was returned, talk to XXXXXXXX or his supervisor. I will be sending copies of this letter and supporting materials to them. This mess is the result of a poorly designed product and a poorly run insurance system. You and I have been caught in the middle of it.

Sincerely,

and on and on....

I feel like a broken record, going on about my wrist pain. But isn’t that how it is when you are in chronic pain? It’s all you can think about, and it colors everything else in your life.

I have a living, breathing example of this right under my roof, and I’m not talking about myself. Shakespeare is doing so much better since his surgery, it’s amazing. Not only does he not limp anymore, but he’s a happier kitty. He is more active (though still the least active of the 4 cats), and more affectionate. He even seems to be getting along better with the other cats. Really, he’s like a different person. Sometimes a pest now, with his appeals for attention. At times I feel really guilty, that we didn’t see him limping earlier, or check his paws earlier. Had he been in pain the whole time we’d owned him? (2 years) I want to get mad at the vet that she didn’t check his paws, but who would have thought to check? He was declawed, why look at the paws? This isn’t a common problem. So, with effort, I put all these feelings behind me, and am glad he’s doing well now. Sometimes I wish these cats could talk, tell me what’s wrong – though I imagine what they’d say would run more like, “treats, can I have treats now, more treats… time for dinner, ok, now time for dinner, dinnertime…. Ooh bird!.... and oh that feels good, scratch me here, now here, and over there, and by the tail…. NOT the stomach!” (repeat each section about 100 times) Anyway, Shakes was in constant pain, and now he’s not, wouldn’t that be nice for me too?

It was an interesting visit with the rheumatologist. He gave me more than just relief that I don’t have rheumatoid arthritis. He gave me a sample nsaid cream, and a prescription for it and an oral one if the cream doesn’t work. He thought that a TENS machine or PT ultrasound might help my wrist, and wasn’t so sure I needed surgery. I have tried ultrasound some, but perhaps not consistently enough. I made an appointment for another hand surgeon for next week, for a second opinion.

The cream is definitely helping with the pain. And it made me wonder – at the beginning of my vacation I was still taking naproxen sodium as I had the week before the trip started. Perhaps that was why the pain went away? And it stayed away because my lifestyle was so stress free. But when even the lightest stresses came back, without the anti-inflammatory to compensate, then the pain came back easily. Thankfully, not too severely.

I have to say that when asked where the pain is on a 1 -10 scale, I only say 2 now. Before the first cortisone shot it was a 7 or 8, before the second shot it was a 5. So, relatively speaking, this is much better. In fact I barely call it a pain, it’s more like an ache. My wrist feels like it’s being squeezed, my fingers tingle a little. Most of the time it’s a 1, but once in a while I move just wrong, or I push back on it, this is about once a day – and it’ll spike to a 4, so I figure a 2 is a compromise. The pain isn’t acute, but it is chronic, and I don’t see it going away without some kind of help. But, I don’t think this is pain worthy of surgery, not yet anyway. I have to explore other options, and I have to figure out what is causing it in the first place. Because, my greatest fear is that I could have the surgery, and a long difficult recovery, and then not knowing what caused the overuse stress exactly – I could cause the pain to come back again anyway.

Several things are on my list for possible sources of wrist pain – transfers, driving, pushing my wheelchair, cooking, typing, everyday activities like dressing or activities I do in the bathroom. (Of course I do a lot more activities, but the others don’t seem like ones that stress my wrist, though I could be wrong.) On vacation I did very little of all of those – except for the everyday stuff and typing – isn’t it nice to know that my blog isn’t causing me pain! I did push myself about some, but probably less than I do at home.

And since I’ve been home I still haven’t done much driving or cooking. This is because the day we got home we started a huge electrical project that we had set up way back in November. We’re upgrading our electrical panel (which means getting a new one) and getting rid of all the aluminum wiring (should have been done ages ago). This has meant totally new service from the street to the house as well, which in turn has meant trenching and boring a channel to put conduit…. We chose to do this project right after vacation because at some point we knew we could have 2 days without power as they reconnect the new copper wiring to the new panel, and disconnect the old. Last November we started eating down our fridge and freezer, so that it’s now pretty bare. Less food to store at our neighbors that way! And also, consequently, less cooking for me now. And with all the work going on, I’ve been sticking pretty close to home. The switch off day is this Friday, so hopefully by mid next week it’ll all be done. Can’t wait!

OK – so assuming my stress list is pretty complete, there are only 2 activities I’m doing that I imagine are causing my pain at this time – transfers and just generally pushing my wheelchair. That doesn’t mean that driving or cooking (or anything else) might not cause pain later, but at least not now. I have to work with what I know to be problems first, tackle others as they come later. It’s good timing that I am buying a new wheelchair this year, perhaps I can reduce some of the weight I push around. There are some other types of handrims than the ones I have, that are easier to grip, fitting your hand better. Changing how I transfer is a harder problem.

But look at my list of possible stresses, and no wonder I’m overusing my wrist – My stresses, aside from cooking and typing, are things that wrists aren’t really meant to be doing. It isn’t that I’m trying to lift weights, I’m just trying to live.

Transfers are using your wrists by putting weight on your hands as you slide across a board to get in and out of a car, or without a board (in my case anyway, some use boards all the time) onto and off a bed, shower seat, toilet.

Pushing my wheelchair, using hands and wrists to walk.

Driving is hand controls, one hand to steer with a “suicide knob”, the other to accelerate and brake with a lever that controls the foot pedals.

Getting dressed means leaning to one side on the bed, pulling up pants on that side, then leaning to the other side and pulling again. There’s a lot of gripping and pulling in getting dressed. It takes me 20 minutes to put on socks, underpants and pants. It’s a small task, not hard, but does take practice.

So, I am a broken record, talking about the same story over and over. At least that’s how it feels. I know each doctor visit takes me one more step on the way to understanding all of this, even when I disagree with them. I just wish it didn’t take so long. So, next week, perhaps I’ll get some idea about whether surgery is going to be the only fix in the long run, and also some idea whether it’ll come back easily. I don’t know whether this doctor will have any better idea than the last hand doc (or the rheumatologist for that matter) what the specific causes are. It may be that I need a more specialized session with my PT, or even another PT, who has a rehab specialty. But I’ll keep chipping away at this, and for good or bad, I’ll be posting about it again too.

I think there is a key point here, that’s not really about my wrist or a new wheelchair or even planning a vacation. One of the challenges of dealing with a disability is that so many things take a lot of time. Injuries, pressure sores, overuse complications can all take months to understand, resolve and heal. The funny thing is that some things for us heal very quickly, like broken bones. But the general rule is that healing will take a while.

Medical services are not set up to be quick. I first started trying to reach the rep at Mobility Solutions (and I do think they are a good business, or I wouldn’t stick with them) last Thursday, and finally he called me back this afternoon, 6 days later. Except for last Friday, I’ve been home all these days, so it wasn’t that I missed his call. He’s overworked, on the road all day, not even able to check messages. I have his email now, so hopefully we’ll have an easier time communicating. And I’m documenting in the blog each step of the way, which will show how long buying a chair will take.

My situation isn’t urgent either about my wrist or my new chair, or I might insist on faster service and earlier appointments. Waiting weeks and weeks for appointments is annoying, not to mention not really good for your body. It’s one thing to have slow service while making plans for a vacation, though I might make an argument that this is also annoying since all those slow responses were disability related also. But still, it’s even more frustrating when it’s health related.

OK, I’m done now, I’ll turn the stereo off. It’s a beautiful day outside, mid 70s and sunny, and I’m going to go enjoy it. Then later I plan to look over all 500 Antarctica photos on the computer, and pick out my favorites to show someone tomorrow. My wrist still hurts, but life is good.

wheelchair research

I have noticed that before a big trip, bicyclists like to document all the items they are taking, from toothpaste to repair kit, and to post these lists online, often with photos. I know 4 bikers who have done this in the past couple of years, and I only know 5 long distance bikers! Actually the 5th person I don’t really know well, so perhaps he has too. I suppose it’s something related to the equipment, and the fact that everything you need must be there in a small bundle.

I didn’t feel that desire to list everything in my suitcase before our vacation, though I did print for myself a very long, regularly updated, TO DO list for all the stuff I had to do during the 2 weeks before we left town, and that included a packing list for myself – “Don’t forget the travel clock” – kind of stuff. I figure it will be helpful for me next time.

But I am reminded of these organized people, as I get myself organized for wheelchair shopping. Perhaps it’s the equipment aspect that does it to you? Bikers like to talk bikes, perhaps wheelers like to take wheels?

Wheelchair shopping is not unlike car shopping. There aren’t as many makes and models out there for chairs as there are for cars, but there are similarities in the process. There are sport chairs, chairs just for transporting someone (they can’t push themselves, can only be pushed by another), extra wide heavy duty chairs, less fancy chairs for occasional users who often can stand but not walk, and then there are chairs for people like me – ones made for someone to live in 18 hours a day, 7 days a week. My chair has to be strong, sturdy, solid, and also easy to push and preferably light weight. It has to have features to make it easy to get in and out of, and should have decent back support. And well, for me, it’s a good thing if it can be orange too!

Like shopping for a car, you don’t look at every car out there, at least most people don’t. You rule out ones too expensive, made in Germany, or 2 doors, whatever suits your lifestyle. And so with me, with the help of the representative from the distributor, Mobility Solutions, and the PT at Sharp Rehab, I really have 3 makes of chairs I’ve been looking at. I want to double check that with the rep, since now I’m leaning more towards titanium, which wasn’t clear at the last meeting, but I believe it’s still 3 companies.

So, one day last week, I spent the better part of one day and one evening researching chairs made by Quickie, Invacare and TiLite. I currently have a Quickie 2, my 3rd Quickie chair. First you look at their websites, to see what models they have. It’s rather frustrating actually, because it’s really hard to figure out exactly what the differences between some of the models are from their own websites. And there’s no Consumer Reports article to help you with this! Reading individual’s reviews doesn’t help much either. In the end I printed out the order sheets for several chairs, usually the 2 top choices for me at each company, to compare them. I’ve pretty much ruled out Invacare. Their chairs are so similar to Quickie, that I’d rather get a Quickie again. That way, my old chairs can be spare parts. So, at the moment I’m considering TiLite for a titanium chair, and Quickie for an aluminum one.

I still don’t know if there are significant differences between the Quickie 2 and the Quickie 2 Lite in the frame, or the Tilite 2GX and TiLite SX in the frame, but I do have a much better idea of the differences in options and measurements now! Again , that’s another question for the rep from Mobility Solutions.

So, here are the features I need:
Folding frame
Swing away, removable foot rests
Spoke wheels for lighter weight
Quick release wheels
Brakes – a style NOT like what I have because I get too many bruises
Adjustable seat angle, center of balance, but I do not need adjustable back angle
Push rims
Pneumatic tires
5” front wheels
Removable desk style arms
Flat arm rests
Standard upholstery back
The ability to hold a Jay 2 seat cushion with Velcro, or any after market cushion
The ability to attach foot holders if foot rests aren’t secure enough
And I’d really like to reduce the weight!

Questions for the rep, who I am waiting for a call back from:

1. What is the benefit of titanium other than less weight? How much weight does it really drop? What is extra cost?
2. Any other brands worth a perusal besides Quickie, Invacare and TiLite, especially since I’m now considering titanium?
3. Difference between Quickie 2 and Quickie 2 Lite, are frames the same
4. Difference between TiLite 2GX and SX, are frames the same
5. TiLite has a single piece frame, is this a real advantage?
6. What are Natural Fit Rims, and Flex Rims? Do people really like them? Will they reduce strain on my wrists? Can I try them out?
7. Do SPOX or SPOX LT reduce weight or are they just a design thing?
8. TiLite has a folding angle-adjustable seat back, I don’t need the angle adjusting, but in what way does it fold, is this useful?
9. Can Frog Legs be added later if I feel I need shock absorbers? Past experience is that insurance won’t cover these anyway, still true?
10. Anthem Blue Cross supposedly pays 100% of my DME (Durable Medical Equipment) – are they likely to pay it all, or only up to XXX – what they think is reasonable. For example they might pay for an aluminum chair, but not a titanium chair? What if I’m willing to pay the difference, is that a problem for the insurance company, will they deny paying anything? I’m having wrist trouble, and I’m sure my docs would advocate for a lightweight chair, would that make a difference? Can I order a chair first, then use it for pressure mapping to pick the best cushion later – or does all this have to be ordered together?

Questions I need to answer for myself:
1. How much extra am I willing to pay? Or perhaps stated, how much is dropping just a few pounds worth?
2. Do I really need anti-tips and frog legs? I rarely use the anti-tips, and the frog legs make their presence most known when they are annoying me, I have no sense of their benefit anymore. They add weight.
3. Do I want to be sure the chair is strong enough for adding on power assist wheels down the road? That might limit models I can choose, or be an extra expense for a reinforced frame not to mention more weight. I don’t need power assist now, but might I in 3 – 5 years?
4. Titanium? YES OR NO

Features I would like to see in person:
• Rear wheel spokes – SPOX and SPOX LT, including colors
• Handrims – Natural Fit and FlexRims
• On the TiLite chair only –
o The folding seat back of the 2G
o How the quick release wheels work, esp in titanium
o What are short tabs?
o Type of brakes – scissor and unilock
o Colors of frame, upholstery
o How the arm rests are attached
o How the seat snaps into place
o Swing away foot rests
• On the Quickie only –
o Type of brakes – scissor and compact
o Colors of frame
o New foot rests
o Are arm rests, and quick release wheels the same as 5 years ago?

The next thing is for me to talk to the rep, get some of my answers, either expand my list of chairs to look at or reduce them. Perhaps he can talk to my insurance company and see how they will work, get preauthorization.

April 9-11 is something called the Abilities Expo, up in LA. This group puts on several conventions around the country each year, where they have vendors, workshops, and exhibitions on everything related to disability. Reps from all chair manufacturers will be there, companies who make adapted cars, clothing makers, gadgets, home remodelers…. There will be dance performances and talks by people who arrange travel. I’ve only been once before, perhaps 20 years ago, but I think I’d like to go this year. My main objective is to get a good look at the wheelchairs, both at the vendors’ booths and ones that other attendees are using. Who knows, maybe I’ll find something else new there too! But, I’ll be happy with getting to the point where I know what wheelchair I want to get next.

Every 5 – 6 years I go through this process of buying a new chair, which at this point feels like not a moment too soon. My chair is creaking and getting harder to push. I know one person whose insurance only lets her fix things, so she has a really old frame with parts of all different ages. I know another whose son needs both a power chair and a manual one, but insurance only pays for one. So they buy the manual chair out of pocket when a new one is needed. I’m lucky that so far I only had to pay for one chair out of pocket.

I remember them all! Back in the 70s the industry leader was Everest & Jennings. I believe they are still around, but not what users like me need now. These are the chrome style you see around airports and hospitals, heavy and rather ugly. My first chair was an E&J, but I could pick the upholstery. I picked a dark olive green/brown mottled naugahyde, which I remember my mother just hating. That chair lasted barely 4 years. While I was at college in New England, the snow got inside the frame and rusted it out, to the point where it surprised me one trip home when it wouldn’t fold anymore. Its replacement was also an E&J, with black upholstery. In those days, you had to regularly oil the frame, and bearings in the wheels, and what college kid is going to do that?

In the early 80s a new style of chair started coming out, like the style I have now. Chairs have not changed all that much in 30 years. Two big companies then were Quickie and Quadra. I got a blue Quadra. Blue, though it is definitely NOT my color, because I was in grad school and trying to look professional. Very serious, dressed in navy. The blue didn’t work out, and the Quadra wasn’t my favorite chair either, though I’ve long since forgotten what its faults were. But Quadra died anyway, and Quickie emerged as the industry leader – and I’ve had 3 Quickies – a fixed frame red one that was great when I had a van, but rotten for travel because it didn’t fold. Then a green one that I still have as a spare, almost identical to the orange one I have now. I have enjoyed my Quickies, and wouldn’t be too upset if I ended up with one again, but perhaps I can get something lighter, even more sporty? Might it be time to trade in the Honda Accord for a Subaru Outback? In a way, getting a new chair is kind of fun and exciting! Though I wouldn’t mind if the process took a little less time, come on Mobility Solutions man, call me back!

headline news

“Gardner was parole violator
Officials: Incidents didn’t merit prison”
Today’s headline in the Union-Tribune, talking about the suspect for the Chelsea King murder

Well, duh… aren’t they all? Is this news to anyone? I could go into a long diatribe about how the Union-Tribune doesn’t really have serious journalism, or that news in general isn’t news but rather another form of entertainment – but that’s enough.

The men who shot me were also out on parole. This is a story as old as the hills. I surely wasn’t the first, and Chelsea King’s story won’t be the last. And I wonder if anyone has done this research, but I would bet good money that almost all the people who commit the most serious of violence towards other people, are out on parole or at least have a prior record for something. It’s hard for me to imagine a grown man (or woman) springing fully into this world at that level without getting into trouble with the authorities at some point earlier in their lives. While there may be isolated incidences where the parole officers really did act inappropriately or unprofessionally or made bad judgments (and perhaps this is one of them, I have no idea), I believe what’s wrong with our society is a lot more complicated. And not being a social scientist, criminologist or psychologist – I have no idea how to fix it.

The men who shot me got 17 years for attempted murder. The woman involved got 5 years. I got my name in the headlines, just like Chelsea King, except that I was alive. For several days right after the shooting, there were pleas for donations of O- blood, my type, for they had deleted reserves on me and needed help replenishing them. Then after I survived the first few days, it was news of my progress. A week later the news was of the capture of the criminals. Of course I heard about this later, in fact I was shielded from any knowledge that I was in the papers till much later. But my grandparents saved as many papers and clippings as they could get their hands on, and I still have them, now very yellowed.

The robbers went to jail – men with no money or a means to earn any. My parents were saddled with mounting hospital bills, and a daughter who was going to need modifications to their home, and they had no idea how much more medical care in the future I’d need, or other costs my disability might cause. The men responsible had no money to help pay for that stuff.

My parents, or more accurately my mother, sued the store I was shot in, and later tried to sue the parole board for letting these men run free. I say my mother, though both my parents’ names were on the suits, because of the two of them, Mom is more analytic, resourceful and more likely to get angry. If she feels something is wrong, and a benefit is due to her, she’ll fight for it. I say this with some pride, because it’s a trait I’ve either inherited or acquired from her. I am very similar – you know when you buy a toaster and you’re supposed to get a rebate in 6 weeks, and then it doesn’t show, so you call and get a recording to send every thing in again, and then it doesn’t show, but you persist again – well, my mother and I are the type who will eventually get that $20!

She felt something was due to me, after all, this incident wasn’t MY fault. The first suit was against Peasant Garb, for a reason that still seems petty to me. I can’t fault the shop for what happens. But apparently the back door of the storeroom we were all in was locked. So, if any of us had made a break for it, we wouldn’t have been able to get out. The shop settled out of court – which I’ve always seen as a gift, honestly, or perhaps a way to avoid more publicity – and I got $100,000, of which $30,000 or so went to the lawyer. Not much money to last a lifetime. It paid for a few years of college and grad school, and it covered the down payment for my first house, and then it was gone.

The second suit against the parole board was thrown out at a hearing as without foundation. It never made it to court. End of story. You can’t sue a parole board, or parole officer, for they are protected by law, or at least they were then in Pennsylvania. I believe the men who shot me had skipped parole meetings, and had violated parole in more ways than one, but I really can’t say the parole officers are at fault.

So, any extra money my disability has cost me has essentially come out of my pocket, or shall I say, my husbands’ pockets (married twice). Luckily my health is pretty good, actually if I didn’t have medical costs related to my disability, I’d have nearly nothing. And even more luckily my insurance has always been good, and most of my costs related to my disability have been covered. I do wonder though, if I should find myself alone, whether I’d be able to get insurance. My preexisting conditions make me uninsurable. (I vote for Obama’s health reform.)

I have several friends who are paras and quads, for all kinds of reasons – car accidents, diving accidents, sports injuries, victims of violence. Some are spinal cord injured (SCI) because of their own mistakes – like diving into a shallow pool. Some can point the finger at other people or companies, and are lucky enough that those folk had deep pockets or umbrella insurance – car manufacturers for example – and they got money in a settlement. This is great, and I’m happy for them.

I believe I have only one friend who was also a gunshot victim. Jane was in a 7-eleven when it was robbed. The gunman made her boyfriend lie down, and then had her lie on top of him, and then shot into her back. Her spine was shattered in several places, resulting in all kinds of problems besides SCI (unable to have kids for one). Her boyfriend walked away almost uninjured, and dumped her right after the shooting. Her situation was even worse than mine, no money settlement at all. And when I knew her, she worked very few hours making little pay, because if she earned too much she’d lose social security disability and medicare or medicaid. I’ve known people who didn’t marry, though they had long term relationships, because that would disqualify them for benefits. You do what you have to, to work the system.

And then one day the frame of Jane’s wheelchair broke while she was sitting in it, and she fell over backwards. She broke her knee, and had other injuries, but the knee was the biggest problem. It caused a blood clot behind the knee cap and now she’s got long term consequences. She has to take Coumadin for the rest of her life for one thing. But she could point her finger at the wheelchair manufacturer, and this time she got money from someone. It was put in a trust for medical related expenses, so it wouldn’t increase her income, and hurt her benefits. Plus they bought her a new chair, car and condo. So, in one person, you see both sides. While she couldn’t have access to the money outright, it did give her some piece of mind.

I’ve talked all over the place today, but essentially all I’ve talked about is responsibility and consequences. I feel for Chelsea King’s family, I really do. I am sure they would prefer that their daughter were injured and alive rather than dead. The man who raped and murdered her deserves a severe punishment. I hope they’ve caught the right man. But it isn’t the parole office, or the fact she was out alone, or anyone else’s fault, other than the man who hurt her, or if you want to look large – it was our sick society. No matter what he does, or how much he’s punished, there’s no way a true reparation will be made. And one day, it’s possible he’ll be out on parole again, and Chelsea will still be dead, and her family will always miss her.

For me, it was 2 men and 1 woman, tried and convicted, who have served their punishment. It certainly wasn’t my fault I was shot. And because I didn’t die, I continue to carry the costs of someone else’s mistakes. I support the institution of funds for victims of violent crime, in the few places that set these up, but rarely do these funds last long. I think as a society we could really do better.

relief

I don't have rheumatoid arthritis, and I'm so relieved. It wouldn't have been a death sentence, and I'm sure it would have been manageable. But I am so glad I don't have to add another layer of complication to my wrist problems.

The blood work was unambiguously negative, except for the initial high rheumatoid factor (RF) which the rheumatologist says to just ignore now. Some people just test high, and it means that test is probably forever useless to me. If I start to have real symptoms of rheumatoid arthritis I need to go to him directly for the higher level tests.

The ultrasound was very obvious, to the doctor anyway, but even to me in a way. I couldn't tell if the bones were ok, but it was really clear that my tendon is very inflamed and enlarged - that's the DeQuervain's tendonitis, that I've known about for 9 months now, and that I've had 2 cortisone shots for, and that obviously isn't healing totally. So, it's back to the same old story. What am I doing to stress my wrist? And I'm going to have to figure this out, or I will end up in surgery one day. But, just for today - I'm going to be happy with what it is, and not something more.

wrist pain is back

or perhaps this should be called "apprehensive about Friday"

My wrist is achey. In Buenos Aires it reminded me that it still existed, when I was doing a lot of transfers in and out of Martin's car. He has a GOL, smaller than a GOLF, and it's a tricky transfer - read: harder on the wrists with a danger of bopping my head. My wrist didn't hurt then, so much as remind me at moments with strain.

Now, it's worse, but not as bad as it once was, it clearly needs attention. It aches and my hand tingles. So, I was all prepared to write about the wrist pain, and speculate on the cause of it. What am I doing or not doing now, that I didn't do on vacation? It didn't hurt during vacation, why? etc.

But I can't do any of that till after I see the rheumatologist on Friday. I'll find out results of my blood work, and they will do a wrist ultrasound. And I admit I'm anxious about this. I really really don't want to have rheumatoid arthritis. Sure, it won't be the end of the world, but it would make my life more difficult. I rely on my hands so much. The fear of breaking an arm or wrist, even the fear of inflaming a tendon or shoulder, stops me from taking a lot of risks. Though I have been known to miscalculate the risk at times, oops. I abuse my upper body so much as it is, that the idea of an autoimmune disease to battle as well feels daunting.

But I don't know yet, one way or the other, whether I have RA or not, so I just have to hold on till Friday. If I have RA I'll deal with it, as I deal with everything. My life won't stop. But if not, then I figure out what all my stressors are, and try to fix them. Either way, I think I'll go for a super lightweight wheelchair this time, because I just can't afford to lose use of my right wrist. I should make pushing my wheelchair as easy as possible, maybe even use power assist wheels. It's one stress I can absolutely do something about.

And in the meantime I need to think about other things besides this one persistent memory: In Rehab, my first roommate was a woman, who at the time I would have just described as middle aged, though now I'd guess she was in her late 30s or early 40s - younger than I am now. She had rather advanced rheumatoid arthritis, and her body was quite deformed. I forget her name now, but I remember that she was very pleasant company, a nice person. She had the bed by the window, mine was on the inner wall. She was having a rough time though. Her joints were not working well at all, and she was very limited in being able to do anything for herself. She had open ulcers on her legs as well.

I had just gotten into rehab myself when she arrived, and I was still very weak. But my condition was stable, I was healing, and I was young. My disability wasn't a disease, or progressively getting worse. Slowly I was getting stronger, and learning to be independent. I was learning how to get in and out of bed, get dressed, take a spin about the place. One night after going to bed, through the curtain dividing our room, I heard her crying and I asked her why. Her answer was that it was hard for her to watch me getting stronger and leaving, when she was never going to get better again.

She wasn't in the hospital very long, by the standards of that day. Perhaps it was 2 weeks, maybe 4. I don't suppose rehab was really that useful to her, I don't know. And a few years later when visiting the rehab center, I heard that she had died. And she's the only one I've every known with rheumatoid arthritis.

I know a bit more about rheumatoid arthritis now, even if I don't know anyone personally. Many people have it for years, and can be in remission much of that time. There are a lot better medications now. All the same, I'd prefer not to have RA, just as I'd prefer not to be a paraplegic. Sometimes in life though, you just don't get to choose.

Second Surgery

If I follow my 1973 timeline, today, March 5, was the day of my second surgery. Perhaps my memory exaggerates the exactness of the time spacing, but somehow it’s fixed in this brain of mine that I was in the hospital exactly one month before the second surgery, then exactly one week more till I was transferred to a rehab, and lastly exactly 4 months till sent home. But, even if the exactness is exaggerated, the spacing is probably pretty close.

After the trauma of being shot, and the first surgery to save my life, the doctors expected my body to be in some kind of shock, but they weren’t sure about long term damage. They did a spinal tap, but my spinal fluid was clear, which meant they couldn’t see any damage to the cord. They did x-rays, but there was no bone damage. The bullet had gone clear through me, so my neck was full of scar tissue and bullet fragments. (I can’t have any MRIs because there’s a risk these bullet fragments could be attracted to the magnets and pull themselves out of my neck.) And since the bullet, had at least passed close to my spine, if not through it, they expected the shock alone to cause paralysis, but then with time they expected it to pass. But after 3 weeks I was still not able to feel or move. Daily, they would stick my toes and legs with pins, and ask if I could feel anything, but the answer was always no. So, finally another surgery was called for.

This time they went in my back, to get a closer look at my spinal cord. They removed 2 bones from my spine at the level of injury T1/T2 – really at the top of my shoulders. If you feel your back, along your spine, you feel a ridge of bumps. These correspond to the various cervical and thoracic openings on your spine. 2 of mine are missing now, from the surgery. With these bones out they could see that indeed the bullet had gone through my spinal column, and that there was severe scar tissue and damage. And now, my paralysis made sense, and we knew it was permanent.

I wish I could say I remember the moment I knew my body would never be the same, but I can’t. I suspect that some part of me already knew. One doctor out of many attending me, had suspected all along that I was now a paraplegic, so the seed had been planted, if not watered. The other doctors, being real people with real hearts, and some with daughters or nieces or sisters my age to boot, didn’t want it to be so, and probably were being overly optimistic. But after that surgery we all knew.

Of course, that day, similar to February 5 when I was actually shot, I put my energy into healing. It isn’t like I told myself to heal now, or consciously made some effort, but I know that is what was going on. You fight to live, that is what you do. I think most people have to make a conscious effort to NOT fight to live, if they choose to give up.

I do remember being stuck totally flat on my back, and being very uncomfortable. They didn’t put any pins in my back, just sewed the muscles together. They didn’t remove my whole spine!, just the small parts that stick out at 2 vertebrae, so really my spinal column is still sturdy. I should learn the part names, huh? But those muscles needed to heal, and so I had to lay flat. And now, there’s a flat section on my back there, with a vertical scar down the middle, and I’ve never had any trouble with that spot.

One week later I had recovered enough to be sent to a rehabilitation center. The task of recovery had to shift from healing from injury, to learning to live with disability. I was still weak, and had lost probably about 20 pounds dropping from 115 pounds (approximate guess) to 95 pounds (or possibly a bit less). I’m 5’ 6”, so that’s skinny.

February 5, 1973 was the day I was shot and injured.

March 5, 1973 in a way, was the day I became a paraplegic.

March 12, 1973 was the day I began to learn to live again, with 4 months of intense education in a rehab coming first. And still, every month, if not week or day, there is more to learn.

Montevideo and Buenos Aires

The final chapter for this vacation, written not while traveling, but from home.

I have to write this before the activities of home swallow me up, and the memories fade of the last few days of our vacation. It is nice to be home, in my own bed, with my own shower and toilet, and my cats. I missed them, and it was a nice feeling to have 2 sleeping kitties cozy next to me last night. Mostly, it feels nice to be back where I feel independent again. Not that I’m ever totally independent (is anyone?) but at least at home the Honey Do List has things like “change light bulbs” and “hang the hummingbird feeder” instead of “help me get into bed”.

My memories of the last 3 days of our vacation are definitely losing detail, but a few things really stand out.

Montevideo, Uruguay – a nice city, similar but smaller than Buenos Aires, and desperately in need of an influx of money. Streets and buildings are rather run down, abandoned, trash about. But there’s a nice feel to the place all the same. The buildings would be so charming if kept up, many have lovely ironwork balconies and doorways. Along the Rio de la Plata there is a very pleasant beach and walkway, and on the other side of a main street just off that beach is a run of buildings that reminded me of Miami Beach. I’m sure the apartments have a great view.

The tour we set up with Celebrity worked out well. The driver was pleasant, and the tour guide was knowledgeable and interesting. Like in Puerto Madryn, the agency that set up these tours for us used English teachers as guides during summer tourist season. The guides both liked the extra money and the lighter schedule in summer. And both spoke better English than I had expected. At this point, I would give Celebrity Cruises higher points for service to people with disabilities than I would give Holland America. This perhaps merits its own blog entry, but Celebrity was more accommodating, easier to reach, and willing to find solutions. The tours they set up were perfect – enough that I might consider a private tour again even if bus tours ARE available. The tour guides take you where you want, talk about what interests you and you see more. We stopped at one lookout where a Celebrity bus tour was stopped – and half the people on the bus were looking at the scenery and monuments, half were examining the souvenirs made in China that vendors were hawking. We were in and out in 15 minutes, and I’m sure they were there twice as long. Holland America had this insane procedure where you need to fill out forms, wait a month for feedback about accessible excursions (or more) until you began to feel like you had missed your chance to sign up, only to be told there wasn’t anything to sign up for.

There’s not much that sticks out in my head about Montevideo except the river, and the plants. There are a lot of gardens and outdoor sculpture. At the end of the tour, we stopped to see their cathedral and then walked around the Old City. I bought a hat that was locally made (my typical orangey rust colors, and it will go perfectly with a scarf my friend Steph recently knitted for me) and we walked over to a market for lunch.

That lunch and all the meals we had in Buenos Aires over the next 2 days are what I remember most clearly about those days! 3 lunches and 1 dinner, all fabulous.

The Montevideo lunch was huge – we could have ordered only 1 meal and it would have been enough, who knew? The prices aren’t a good indication of portion size, you get your money’s worth in South America. We started with a melted provolone cheese appetizer that I am going to try to make myself, along with a typical Uruguayan drink called media y media (half and half), which is a mixture of white wine and sparkling wine. Jim got steak, and I had a fish dish of some fish I’d never heard of before – both excellent.

Sunday’s lunch was cooked by Martin’s wife, Kene, and was delicious – first onion soup, then salad with avocado and blue cheese (not just the standard Argentine lettuce and tomatoes), and a roast with potatoes, rice (a tribute to her Philippine upbringing) and roasted red peppers. Dessert was an amazing flan. I felt like I had the good beef Argentina is known for finally.

Sunday dinner was at a hangout that tourists would never find, in their theater district. It was about 10 PM or later when we got there, and just beginning to fill up. Eventually there were 2 large tables with theater personnel from 2 different plays. So, Martin was trying to figure out who was the star, did he see him or her in such-and-such, who was the dame at the table, who did light crew…. It was a sort of South American version of Times Square I suppose, but just a typical Buenos Aires parilla (bbq) with the usual asado (cut of beef), pastas, and Spanish dishes. We had that melted cheese dish again, empanadas, and then opted for pasta.

The next day, lunch on Monday before we flew home that evening, was the best of all. Usually before flying I like to eat light. Bathrooms on the plane are not accessible to me, so I don’t want to risk needing to have a bowel movement. So, it was painful to me not to be able to just stuff myself! The food was that good. In the end I did over eat, but made sure I didn’t have any of my worst trigger foods, and I took a medication that helps ward off irritable bowel trouble.

Martin had taken us to a really small Italian neighborhood bar in Palermo, Guido’s Bar. It had maybe 6 tables inside, and 4 outside, though I think it might have had a room out of sight too. We sat at an indoor table by an open window, and it was a gorgeous day. There are no menus, and no one speaks English there. If we had stumbled upon this place on our own, it would have been rather confusing. You don’t really order, you just take what the chef or owner or waiter wants to bring you, and you pay whatever they say is the total price. The same food to 2 different tables could be different prices depending on their whim. If you forget your wallet, they’ll let you come back the next day to pay, cash only of course. You can make some preferences as you go along, and it does is shift what they choose to bring out. I was watching other tables – one had mainly pizza, another didn’t share dishes like we did.

To start we had 5 small dishes of appetizers brought all out at the same time, family style - a sweet squash, a couscous dish, an eggplant dish, one with mozzarella, ham, zucchini and pepper bits and something else I’ve forgotten. Next course was some small pieces of pizza, like a pizza margherita – very small, about 4 or 5 inches long, 3 inches wide at the crust, but oh so good – like in Italy. Then 3 plates of pastas – all homemade of course. One was a small hat shaped pasta with a creamy mushroom sauce. About now I’m ready to quit eating, feeling very full, already taken my medication to calm my digestion down because I could see it wasn’t going to be a light meal after all. There’s a long time between courses at this place – you have to not only suspend your idea of what you will eat, but also a requirement about how fast you will get service – it comes when it comes. On one hand that sounds like a good thing, not rushing to eat too fast, but actually it gives your stomach time to register how full it is, so that at some point you don’t want any more, but food keeps coming anyway.

Then came the stuffed ravioli. Oh my God, I’ve never had such good pasta. All of these were fresh pasta, of course. 2 types of stuffing. One was a butternut squash, the other a spinach and cheese mixture. The squash ones were simply divine, soft and gooey. Last came a desert plate – 2 ice creams, a small cheesecake, tira misu, and a poached pear. Often after the pasta there is a meat dish, but we begged off. It was the absolute best food I’ve had in ages, and was a nice last meal for our vacation.

Overall I would say the food in Buenos Aires is excellent, like Italy and France, it is hard to have a bad meal there. I admit that I would steer away from those Argentine “fastfood” places serving the national standard of beef, salad and potatoes – but I’m not sure they are bad, just not food I care for. Kene says the fattiness is related to the cut of beef, but I don’t know enough Spanish words for these cuts to be able to sort a menu out.

Curiously enough, Martin told us about an American style steak house, named Kansas, that is extremely successful there. It apparently has quick efficient service, a mostly American menu, made with Argentine ingredients and with an eye to an Argentine audience. It’s a high end restaurant that takes no reservations and always has a 45 minute wait for a table. Sort of made me feel proud.



I have a few other thoughts other than food though.

After this huge lunch on Monday, we took a long walk around a park between the bar and Martin’s home. It was a beautiful day for a walk, sunny, not too hot. At one point we took a pedestrian bridge over a very busy intersection. Down below, bopping in and about the traffic, sort of like the men who hang out begging at our busy intersections, was a man in a wheelchair. That’s his corner, but he doesn’t beg. Some people give him money, for sure. But mostly he’s there as a friend to bicyclists, and in his own fashion he directs traffic (there is a street light), or at least gives the cyclists advice on roads to take and other news. He socializes with drivers, makes friends. Martin had met him while on his bike one time. Apparently when the pedestrian bridge was first built, they made it impossible for bikes to use. This wheelchair user pushed for the bridge to be open to bikes, and to wheelchair users too. It was a huge crazy busy intersection, and one day he’s going to be hit by a car – especially given the way Argentines drive! Except that it seems like everyone knows about him, expects and looks for him to be there, and I suspect if he weren’t there for a week, people would worry.

Martin lives in Palermo. They own a house in a suburb, but 3 of their 4 kids are grown, so they don’t need as much space now. So they are leasing their house, and have rented an apartment in town. It’s in a good location, closer to city action. And it’s a sweet cozy apartment on the 8th floor. We had lunch there on Sunday, and I have to talk about the process of getting into the apartment. The building has 2 elevators, the primary one being very, very small, so I never saw it. I took the service elevator, and barely could get in that. We had to take the foot pedals off my chair to get the door closed. The toughest part though was making the turn from the back entrance to their apartment (where you have to enter into the laundry room when you use that elevator) into their kitchen. We tried taking off the foot pedals, but still I couldn’t turn enough to get the wheels to go through perpendicularly. My chair would fit if I could go in straight, but at an angle it behaves like a wider chair. I had been there 2 years ago and got in, but they had recently gotten a new washing machine, which sat behind the opened door, so the door didn’t open as wide now. In the end we took one wheel off my chair, and Martin held up the back right corner of the chair and wheeled me through on 3 wheels. It worked because my Quickie chair has easy on and off wheels, otherwise I think Jim and Martin would have had to carry me to a stuffed chair, and then brought the wheelchair in afterwards. The things you do when you really want to get somewhere. It was worth it, their place is lovely, and we had a long leisurely delicious lunch with 2 bottles of wine.

Martin is one of my oldest and dearest friends, when we met he was still 17, and I had just turned 18. We took a philosophy class together during freshman year at MIT, and I remember staying up late writing papers together for the class. Jim was in that class too, but I didn’t meet him for at least another year. Jim remembers me from those days, he offered to hold a door for me once and I bit his head off with some retort about being able to handle it myself, at least that’s what he remembers. I’d never refuse an offer of a held door now, but in those days it’s entirely possible I snapped at him. The 3 of us all look back at the philosophy class differently, and I find that amusing. Martin has fond memories, and thought it was a good class. Jim thought it was rather superficial and poorly taught. Me? I was just in over my head, there was so much reading that I couldn’t follow, and the grade was based on 3 essays and class participation. I was always too lost to participate much, and the essays could be turned in whenever we felt like. I barely made it through, and was glad it was Pass – Fail!

So, for me, anytime I see Martin is a good time, and my feeling about Buenos Aires may be more positive that it otherwise might have been as a result. Still, overall, I like the places in South America I’ve been to. They aren’t the easiest to see with a wheelchair, but not impossible either, and worth the trouble.