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.