Good News/Bad News

I have severe osteoporosis and I've fractured both femurs since my spinal cord injury. The good news is that I have matching X-rays. The bad news is that I've learned that I am incredibly fragile.

Osteoporosis is a problem for people who don't bear weight on their bones and I understand that most people with SCI have some degree of osteo. After my first fracture, I learned a lot about osteo, and I've been actively working to reverse my bone loss. I take Actonel regularly. I eat a high calcium diet and take supplements. I stand for 2 - 3 hours each day in my standing frame. I participated in a FES study that created weight bearing exercise.

I went for a DEXA scan today. DEXA scans measure bone density. Often, the practitioner can give you an idea of how "old" your bones are based on their density. Last year I learned that the long bones in my arms were 36 y.o. my right hip was 75 y.o. and my left hip was 85 y.o. YIKES! I'm in my mid-forties.

The good news from today's DEXA, the very, very, very good news is that my spine and right hip have shown improvements. The spine more than the hip but improvement is improvement. The bad news, the very, very bad news is that my left hip has lost about 35% more bone density.

After consultation with the doctor, it appears that may be because of two factors, my most recent fracture was to my left leg. The splint and the support that kept the leg elevated seems to have been a factor in my bone loss. The other reason is that my left hip has twisted from the imbalance of my muscles that should hold it stable. The condition is called a pelvic obliquity and it's caused a severe "swoop" in my spine. It's hard to breathe sometimes because if it. Since I no longer bear my weight evenly on my hips, this seems to be a major factor.

The good news is that we'll get more aggressive on fixing my hip which has caused numerous problems. The bad news is that we'll get more aggressive on fixing my hip.

As far as osteoporosis treatment and prevention; the good news is there are options. I will take a new drug, Forteo and continue to stand in my frame and maintain a calcium-rich diet. The bad news, Forteo is a relatively new drug and there are some concerns about its safety. I think about the drugs that have created safety concerns lately; Vioxx, Avandia... others. I'll be taking this drug that may or may not pose risks by daily injections for two years. The other bad news, I'm no longer eligible for the FES study so I'll be unable to use FES and weight lifting to preserve my bones.

During my rehab I was taught that all of my choices from here on are going to be about weighing risks and benefits in making decisions about my care. I just hope these particular decisions are right in the long run.

du Jour

Today Djaca and I had lunch at du Jour, the restaurant run by the students of the Arizona Culinary Institute. I am completely stuffed and ready for a nap. What a treat that was! From the amuse bouche, to desert magnificent!

Djaca and I worked on my French. She is a patient teacher and hardly laughs as I slaughter a beautiful, lyrical language. We sat and talked about her life in Paris, our experiences as mothers and celebrity gossip while tuxedo-shirted waitstaff saw to our every need. Our server, Shelly, excitedly talked about her upcoming apprenticeship on a Hawaiian cruise line. I told her stories of working in Bermuda.

It was a lovely reminder that I need to treat myself from time-to-time and also that luxury need not be costly. The entire 4-course lunch was less than $20 a plate. If you have a cooking school in your town, check to see if they run a restaurant. It's well worth the time and the price.

The only down side is that du Jour is only open for lunch. And they are closed 1 week each month. Nonetheless, I will return and bring new friends to savor the food and wine and conversation. For that time, I was whole again.

http://www.scottsdaleculinary.com/dujour_restaurant.php

TMI

Of all the weirdness that is me I will share the following facts:

As a child I had a traumatic experience with beets that I still will not talk about but beets will never knowingly pass my lips. Seriously, beets scare me.

As a child, Dickie Cordell chased me and threw his ice cream cone at me and it hit my leg and stuck and slowly slid down my leg to my ankle. The gross part was that Dickie was the fat mean kid in our neighborhood and the cone was filled with Miracle Whip. I can't stand the stuff and even the smell of mayo makes me nauseous. How many people do you know have had not one but two traumatic experiences with food?

I love, I mean L O V E cheese popcorn but I don't like having my fingers turn orange, so I use chopsticks. Works with Cheetos too.

When I'm really relaxed and breathing deeply, my nose whistles. This is especially annoying as I am trying to go to sleep. Sometimes it even wakes me up.

I am incapable of remembering numbers of any kind. What was 6 last time will be 32 the next and 3 the time after. Never rely on me to judge distance.

I can't carry a tune in a bucket but I love to sing. When my son was little and I would sing to him, he would put his hand over my mouth and say "Momma, don't sing."

Once I start reading a book, I must finish it; no matter how bad it is. I am a compulsive reader. My ex had it written into his will that there be no printed material of any kind within eyesight of his casket. He envisioned me grieving at his casket when the little "Made in China" tag would catch my attention. OK, it's funnier when he tells it.

Which reminds me, I cannot tell a joke. I always blow it. They're never funny when I tell them.

How about you? What makes you "weird?"

My Garden

I've always felt good when my hands are wrist-deep in dirt. There's something very satifying in the smell and the feel of rich, cool soil and the crisp smell of green. For many years I worked to grow the perfect tomato. Extra hard to do in Arizona's harsh climate.

Since my spinal cord injury, that's felt out of reach. Then I visited my friend Wanda, a chair user for 40 years. She has the most beautiful garden that she tends by herself. And she grows the BEST tomatoes! Yum! If she can, I can.

Yesterday, I worked with a landscaper to design a back yard space where I could get out and garden again. Today, instead of seeing used coffee grounds and egg shells, I see compost. I can taste my tomatoes and basil now.

I'm eager for fall and the upcoming growing season!

SSDD

Big sigh. I don't want this blog to be a continual rant about parking. I went grocery shopping today. Took all these pictures as I was looking for a spot for my van. These are just the 3 instances where the median was blocked so my ramp can't come down. This doesn't even consider the cars that didn't have a disabled driver or passenger. I just don't understand why people can't get it. Any ideas? If you're interested in seeing more violations, some incredibly outrageous, like a big rubber chicken, check out http://www.caughtya.org/

A picture worth a thousand words

I am amazed that so many people have interest in this. So far though, no response from the Sheriff's office or the County Board of Supervisors.

Rather than retell the story, here are the links.....

http://www.kpho.com/news/13263383/detail.html

http://www.azcentral.com/phpAPP/mult...al.com/12news/
__________________

And print....

http://blogs.eastvalleytribune.com/view.php?op=ViewArticle&articleId=1088&blogId=32
http://www.eastvalleytribune.com/story/89356
http://www.kpho.com/news/13263383/detail.html

And, someone I don't know, posted this....
http://malaysia.answers.yahoo.com/question/index?qid=20070507133559AAEgGpX

Other Websites:

www.caughtya.org

http://www.badcopnews.com/bad_cop_news/arizona/

Today, my op-ed appeared in the East Valley Tribune.

Last week I came upon a situation in which I arrived at a local business to deliver a speech on accommodating persons with disabilities and ironically could not find a place to park because a Maricopa County Sheriff’s car was unnecessarily parked in what, at the time, was the only available disabled space. I am a wheelchair-user and require a ramp to enter and exit my vehicle.

I snapped a photo of the officer’s car and on Thursday, the EastValleyTribune.com ran the picture with a story entitled, “Deputy did not belong in handicapped parking spot.” I am surprised by how much attention this photo has received and at the comments posted in response to it. I’d like to share with you some of the details that didn’t make the story and respond to some of the comments posted thus far.

First, I did not mean this photo to be an indictment against law enforcement officers, Sheriff Joe or the MCSO.

I do, however, believe the photo epitomizes the situation people face when dealing with accessible parking. I expected a law enforcement officer to have more empathy and better understanding of how precious those accessible spots are for those of us who need them.

The original statements put forth by the MCSO did indeed take responsibility. But, the MCSO spokesperson went on to state “the lot was full, the deputy needed to conduct official business” and that the car was not parked there long. Almost everyone who inappropriately parks in accessible spaces justifies their actions in the same manner.

The missing details are thus. I did circle the lot and luckily the spot next to the deputy came available. I realized before I started down my ramp that there was not enough clearance at the bottom so I waited inside my van until help arrived. While waiting, I watched another woman with an accessible parking hang-tag circle the lot and end up parking in a spot rather far away. This elderly woman hobbled up to the building on her cane past the inappropriately parked deputy’s vehicle. I wonder what she thought as she passed. Some have said “no harm, no foul.” I hope you’ll agree that this would be a much different story if that woman had fallen in the lot and broken her hip; or, if I had gotten to the end of the ramp and remained trapped there unable to wheel up my ramp backward and unable to go forward. As a person with a spinal cord injury, I am far more susceptible to heat stroke than an able-bodied person. Indeed a friend died last summer after been trapped outside for about 20 minutes.

What if the deputy had parked there after I had exited my vehicle and prevented me from getting back into my van? This often happens in parking lots.

As for how much room it takes to maneuver, wheel chair ramps have wings on the sides to protect us from falling off. I must clear the ramp before I can turn. My knees were against the deputy’s vehicle and I could not get the extra inch I needed to clear. These spaces tend to be quite tight.

I too become frustrated when I see people abusing the privilege of accessible parking. They know who they are. I would welcome stricter enforcement of the privilege.

Please realize that for many of us, those spots are our lifeline to living a “normal” life, whatever that may be. I need room for my ramp so that I can get out of my vehicle to work, shop, worship and do all the same day-to-day things that anyone else does. In my wheelchair, I am about the height of your average 10 year old. Wheeling through parking lots can be quite a challenge when cars don’t see me. The accessible spaces also provide a safe route in and out of the building.

My hope in publicizing the photo was that the public would take a moment and consider the importance of accessible parking and the importance of those median spaces in between. If you are not the disabled driver or passenger that was assigned the permit, don’t use it. If you are that person and you are not getting out of the vehicle, don’t use it. Please don’t park your motorcycle or shopping cart in the medians between accessible spaces. I’m not asking that you make my life easy. I just hope you won’t make it impossible.

My first post

I have finally given up on my other blog. If you are interested, it's here http://360.yahoo.com/jenlongdon

Don't know that I have anything interesting to say but here goes!