Sunny and Clear

The weather today was warm and sunny, and so was my state of mind.

Gavin actually mowed the lawn. And I didn't have to tell him to do it more than 20 or 30 times. He even applied for a job (although it's so close to summer vacation that he may be out of luck. We'll see). But he's still spending lots and lots of time playing Worlds of Warcraft...ah, to be a teenager with summer vacation on the way...

Rog and I went to a neighborhood arts festival this afternoon (Gavin was invited, but WOW was much more exciting than boring old art and boring old mom). It's an older area of town, and parts of it are very rundown, but the houses and business are charming, with many reflecting a 20s art deco style.

We parked what seemed like a bazillion miles away, but Rog was delighted to push my chair. He is much more careful than I, and didn't bark any shins or run over any toes...which I am afraid I have done more than once since I started wheeling around.

The art was OK, and so was the live music, but the people watching was superb -- and the beauty of the wheelchair is that most people don't look at you, so you can really, really look at them...and they never notice. So I got to check out cool tattoos/odd piercings on the Goth Kids, stare at some very strange Rich Lady hairdos, smile at the Avant Garde Artists clothing, and make funny faces at the kids in strollers (ok, that last one I do whether people notice me doing it or not).

I had to tease Rog a little, and said "I'm going to tell Mom that you've been pushing me around." But he's awfully quick -- he said, "Well, then, I'll have to tell her that I'm a dope pusher."

Heh. I have to admit, he's got me there -- can't have Mom thinking I'm Dopey, especially since, this time of year, Sneezy probably fits me better.

Oh, I know. That was terrible. But it's the middle of the night, and I'm working inpatient psych. That's the only time I'm ever up this late, and it makes me even goofier than I am normally.

My New Wheels

My arms are tired...but it's really, really nice to be mobile again, and since I'm not walking much, my hip hurts less.

I figure if I do this long enough, at least I'll have very toned arms.

At some point I suppose I'll learn to gauge where the wheels are on the chair so I don't run into/over things. Or maybe not; I'm still running over curbs in my car (and I've been driving for 30 years now). People on campus better watch their toes.

There is no place on a wheelchair to hang a purse or a bag so that it doesn't bump against the wheels, unless it has straps long enough to span both handles. It's awkward to hold it on my lap; it keeps sliding off when I try to open doors. I am very thankful for my chair, but it could have been designed better for independent users. So I suppose I'm going to break out the sewing machine tonight (I have to start work on my backtack project too -- more on that later) and see what I can devise, since I have documents that have to be hauled all over campus that have been piling up. I can just see trying to balance a 10 inch stack of paper on my lap -- what a potential disaster! I have sent some things through campus mail -- which isn't terribly reliable -- but the big stacks of paper have to be hand carried.

Bugs and Barriers

Alas, the pain relief from the procedure lasted two days...and I graduated to a wheelchair today. I am pleased, though, that my next appointment is next Wednesday, which is three weeks sooner than originally planned (but I had to be a very squeaky wheel to get that). And I guess surgery is the next option.

I do not know how people with chronic pain learn to live with it. The pain colors everything I do; dulls my thoughts, damps my enthusiasm, and makes me cranky (not that anyone really notices that I'm cranky, but I FEEL cranky). Not only is it difficult to find a comfortable position no matter what I do, but it's difficult to get from one place to another. Despite the handicapped access laws, there are still barriers that I never noticed before.

Our parking garage is shared by two buildings. Handicapped parking spaces for employees are situated next to the old building; I work in the new building. To get to my building, I have to use an elevator and then a glassed-in walkway which goes from the 2nd floor of the old building to the 4th floor of the new building...so the walkway is an incline, and not a gentle one. And there's a corner to get round right in the middle.

It's a workout to go up it in a wheelchair, especially since the glass double doors at either end are stiff and were hard to open when I could walk. What is really going to be fun, though, is getting back to my car. I can just see me splatted against the glass doors like a bug on a windshield...

Site Visitors

There are different types of research studies. There are nonfunded studies, federally funded studies, not-for-profit or nonprofit funded studies, and industry sponsored (both investigator initiated and company initiated) studies. I'm sure there are other types as well, but I haven't done those.

At this job, I work mostly with nonfunded studies, but we do have a few industry sponsored studies...and I am actually most familiar with those, since that's all I did for the 12 years I did psychiatric research.

When we do an industry sponsored study, the pharmaceutical or device company has to send out a couple of people to look us over and make sure we have what it takes to do the study. It's always seemed a little silly to me -- after all, this is a university medical center -- but I suppose they want to be certain that we really, really do have access to a lab, and ECG machines, and MRIs, and surgery suites, and a centrifuge, and surgery imaging...you get the picture. Before they give us any money, they have to be sure that we can do the study.

They also ask about a million questions about the credentials of the people who will work on the trial, the Institutional Review Board, the Scientific Committee screening process, how we plan to find people to participate, how many similar trials we've done...and on...and on.

That's what I did last Wednesday -- some folks from a Canadian company came and looked us over. And I got to give 'em the tour...which explains a lot about why my leg got so much worse last Thursday.

Usually they give us a list of what they want to see -- and often a peek through the door is sufficient -- but these folks wanted a thorough, indepth tour of several facilities, none of which they'd asked for in advance. They even OPENED the lab freezers to make sure there would be space for their stuff, noted the last inspection dates on the MRI machines, and asked for the imaging equipment to be demonstrated. I had to make some frantic phone calls, call in some favors, and eventually they did see most of what they wanted, although the ECG people did NOT allow us to tour. Which is typical for cardiology...they need to get over themselves, really.

At any rate, we're approved for this study now -- which means we have something else to offer our terminal head and neck cancer patients. This treatment won't cure them, but might make those last months easier...and doesn't look like it'll detract from quality of life...and might help someone else down the line if it works.

Not only that, but I get to take a trip to Toronto in early July for the start up meeting.

She's Baa-aack!

The procedure went well, although (as usual) the surgery rooms were way behind so everything was delayed. My 1:30 procedure finally happened around 4, so I was home by 7. The doc used conscious sedation, which is better than a general anesthetic, but did leave me with a terrific headache for most of today. The good news, though, is that I'm walking with very little pain.

The bad news is that it STILL hurts to sit...I don't know why I thought sitting would be pain-free when the procedure consisted of a huge needle piercing my posterior...not once, but twice. But at least it's DIFFERENT pain and should go away. And I've vacuumed, and picked up, and done laundry and dishes...all the things that didn't get done last month without lots of nagging Gavin. Which means mostly they weren't done at all, because nagging makes me crazy.

The doc also tells me that the pain relief is almost certainly temporary, and really more of a diagnostic tool. Since the pain was relieved, that gives him a better idea of exactly what is wrong, and what he can do for a permanent fix.

But heck, I feel GOOD. So I'm happy.

If there's a silver lining, I'll find it...

I can't walk now and it's too painful even to sit. So I'm going to lie in bed, listen to the rain and read books...lots and lots of books.

But I'll be back (hopefully) Tuesday, after the procedure on Monday.

Here's Dad! -- Roger's sketch.

Meet the Mom

I worked long-term adolescent psych Saturday night, 11pm to 7am. Kind of a strange prelude to Mother's Day as most of these kids don't have a mom (or dad, for that matter) who cares or is involved. The few that did were getting passes off the floor to visit a mom or a grandmother on Sunday; I can only imagine how the ones left behind felt about that.

A few of the kids have discovered that if they make abuse allegations about the people who work on the unit, that all kinds of havoc and trouble ensue...and since they mostly long for attention, good or bad, it's become a popular pastime. So none of us made rounds by ourselves; always two or more at a time -- one nurse in the hall watching another nurse with a flashlight make sure that all kids are breathing, in no distress, and in the correct beds.

The Plan for Sunday was that my brother, sister, and I would all go to Mom's for Mother's Day; it's been a tough year for all of us, but particularly for her, and we wanted to make it special.

I asked Rog to go with me...it's only been a month, but he's become a very important person in my life already. It's a little scary, but mostly it's wonderful and amazing, and I feel very lucky...in fact, I feel like I won the life lottery.

Rog agreed to go with me to meet my entire family...and then he also drove both ways (about 5 hours total)...since I was tired from working and my hip is still painful. And then he made Mom (and me) cry. He had drawn a pencil sketch of Dad, framed the original for me, and gave Mom a copy. Mom loves it. And it is wonderful; Dad gazes serenely out of the paper and right into your eyes, a bit of a smile on his face, as though to say, "It's going to be all right."

I'm crying again as I write this. But it's a good thing.

Anal Sphincter Reconstruction

Today I had to walk to the Department Chair's office. It's not all that far away, but I'm moving awfully slowly. Which makes it MUCH easier to eavesdrop on hallway conversations. I admit it; I'm nosy.

Nosiness is what got me into research in the first place; I was offered a job in a research psychiatry group in which the shrink in charge stated "If you'll come work for us, you can do anything you want." So...there I was, a very temporary secretary, trained to teach French and Spanish, but this psychiatrist is willing to let me -- with no psychiatric training -- interview psychiatric patients of assorted disorders by asking for social, medical, and indepth symptom histories...and take as much time as I needed and ask any questions necessary...how could I say no?

Sometimes the Powers-That-Be move in mysterious ways. That offer and my acceptance shaped my life into something completely different than it would have been if I'd followed my plan to teach that fall.

Anyway, on my way to the Chair's office, I shared a long hallway with two youngish MDs who were discussing sphincter reconstructions in detail. Since I walk so slowly, and they were standing and talking, I didn't even have to loiter to hear almost all of the conversation, the pros and cons of this type of procedure for this or that patient.

They honored the intent, if not the spirit, of the new HIPAA laws; no names, but "the patient with the hair", "that tall guy", "you know, that woman we saw last Wednesday". Funny how we watch what we say these days.

And then, when I got to the door I needed, not one, but BOTH MDs came over and held it open. I was shocked, not because they were MDs (because the younger ones, even the surgeons, tend to be less Godlike these days), but because they'd been so deep in conversation, I didn't think they were aware of anything but what they were going to do for their patients.

Thank goodness all I have to do is get my hip fixed...and my only interactions with THAT group will be hallway listening.

The Real Reality TV

Every morning, I drive Gavin to school. It's a whole lot easier than making him walk two blocks at 10 minutes till seven am and then riding the bus for 40 minutes. Plus (if he's not too sleepy) we have some interesting conversations in the car.

This morning we were discussing ways to pay teachers more, since Gavin is currently incensed that football players make millions while teachers have barely enough to live on. Gavin immediately turned to TV...

REALITY TV -- IT'S REAL, IT'S NEW, THE HEIGHT OF DRAMA AND SUSPENSE!

Thirty students. One teacher. And NONE of them may leave the room until they have LEARNED CALCULUS!

What the teacher DOESN'T know is that ALL of the students have ADHD*.

What the students DON'T know is that the teacher is an EX-MARINE.

How many will SURVIVE this harrowing experience? Tune in NOW!

*Attention Deficit Hyperactive Disorder
...

I have only myself to blame for Gavin's skewedness -- he learned to read with The Far Side and Calvin and Hobbes.

I'll Take a Little Cheese with my Whine

Warning: Whine ahead. You've been warned.

Most of the nurses I know do not go to see the doctor unless they are in dire straits, and I am no exception. In addition, I have a streak of stoicness (is that a word?) and stubbornness when it comes to pain. But I have finally come to the point where I can barely function.

I would have thought that either natural childbirth or the impaired dentist who drilled my tooth with fake Novocaine (who has since been jailed and lost his licence) would have qualified for the "10" rating on the pain scale. My hip, though, is much, much worse. Two days ago, I stepped wrong and almost passed out (luckily I was with Rog and he was quick enough on the uptake to catch me before I fell. Thank God). I'm still going to work but once I get to my office, it's difficult just to get to the copier down the hall. Walking in from handicapped parking takes forever, and sometimes I can't help crying as I hobble because the pain is so severe.

Even with all this, the soonest the MD can do anything for me is the 16th of May. And that may not work. It's all very distressing, and I can't understand WHY it takes so long when I hurt this much.

It's harder every day to be positive, optimistic, and upbeat. But I'm trying.