Today is good and bad. I have a lovely set of parallel bars and today we tested the height and tried it. It has been 15 1/2 months since I last walked more than a step or two. At first, I struggled. My left foot did not want to leave the floor and let me balance on the other foot and my arms. I had to sit down for a few seconds and resettle myself. Then I got up and walked. 16-20 steps. Yay!

Photos on my new Facebook page: http://tinyurl.com/y8t6r58  

We bought them at www.rehabmart.com at a price well discounted from what it usually seems to cost. Though still expensive. Just Google Folding Parallel Bars. They were $535 plus tax and shipping and handling. Which, the S&H is tricky, so pay attention. $160 was the cheapest S&H. It went up from there to over $300 to have them drop it off on your sidewalk. So, we talked to our brother and got it mailed to his business, which had a loading dock. His boss was nice and they did it for free. Then he brought it over. The box was large and long, but pretty light and easy for my dh to maneuver by himself.

He caulked it to the wall, then used big bolts into the studs. He cut about 3″ off the bars and put the black stoppers on the new ends, so it didn’t punch through the ceiling when folded up. There’s a good 6″ of play room on the 7′ bars to customize.

We have learned, where the bars hook to the end leg posts, it will move about an inch. Picture a square post for the leg. It points straight up to the ceiling. As the bars fold down, there is a U shaped cup that goes over the square. Bolt holes match up and a bolt slides from the inside of the parallel bars, through the holes, then stops outside the bars and is pinned so the bolt won’t fall out. The bad gap is between the U-shaped end and the square piece it fits over.

This movement is part of why I locked up. A 1″ shift in bars you are holding onto for balance is terrifying. But we will get thick washers or nuts to fill in the gap and it won’t move.

All in all, dh says it’s the best $700 he’s ever spent. I must agree.

Wow, sometimes fatigue hits and it’s all I can do to get through the day. It really sucks when that day lasts a week or two. Such is life with FA.

I have managed to be productive for the most part. I pretty much did taxes. Just a few final touches. And, thanks to some really gifted people, I saved my files from the November hard drive death. Namely my NaNoWriMo book that hadn’t been backed up in two weeks of great progress. So, have I learned my lesson? You betcha. And I have one of those awesome 500 G external hard drives to make it easier. I just need to learn the sync software, which, luckily, software is rarely difficult for me.

In the meantime, I wrote a short story for The Mammoth Book of Vampire Romance 2. I know, me, a vampire romance? I seriously doubted my ability to add something new to the sub-genre, but the resulting story is so awesome it fired all my engines.

So, I have a ghost story I’m considering making a YA. A gargoyle story I was playing with to keep writing daily, or that was the hope. A vampire romance I’d love to expand. And Damned. I feel at loose ends. I have a lot to think about.

At 19, I was diagnosed with Friedreich’s Ataxia. We’d been married for about two months and I was about that pregnant. I could walk, without help even. Stairs were more difficult and I needed a hand or, at least, a handrail. At our wedding, we stood on two steps that we then climbed to light the unity candle. I held on to Craig the whole time, just like at the football game where we’d met 2 1/2 years before.

When I was diagnosed, we’d driven to Seattle. We left in the middle of the night since we were both awake. One stop at Frankie Doodles for breakfast and we were off for a honeymoon that would just happen to have a doctor’s appointment. We arrived, rented a hotel room, checked out the space needle and went to my appointment.

We still laugh because I was a ditz at that appointment. The doctor held the flash light in front of my face, and said, “Open wide.” So I opened my eyes really wide. LOL

Well, I was diagnosed based on case history and experience, but they drew blood for the actual test that was nearing completion. Two and a half years after that, I was diagnosed by blood test. I was told to eat healthy, exercise and keep a positive attitude. That was as close to any kind of treatments we had.

So, we skip ahead six years and I begin using a walker. Holding onto walls, especially after several sudden falls and sprained ankles, just did not seem like a healthy thing to keep doing.

Three years after that, 2003, I fell in the hallway of our home. I broke both bones in my ankle. Surgery gave me two titanium plates and eight screws. I couldn’t put weight on it for over two months. The boot came off when my daughter was in the hospital, so I didn’t jump right into therapy. I started therapy a month or so into 2004.

I could walk a few feet with with my walker, but I was very, very nervous. I’d never broken a bone before and I definitely did not want to do it again. Hearing the snap, feeling the most intense nausea. Ugh Plus, with FA, I had sat for so long in a wheelchair where balance doesn’t matter, with the feeling of safety that came with it, that I felt dizzy when I stood up.

I still do at times, like my brain is blue water and my skull is one of those clear rectangles that move like a seesaw. Makes standing, especially with holding on to movable objects, a strange thing. A curious mix of strength, weakness, fear and determination.

These pics aren’t my legs, but here is what we are trying to do. I locked my knees for so long when I walked that I’ve done some damage. Now we are trying to fix it from the first pic to the second.

I began pool therapy last fall. I had a lot of strength to gain. My therapist has been amazing. Recently, I have begun land therapy. Walking with my knee cage and with parallel bars. It feels good. And suddenly 5′ 1/2″ feels really tall. LOL I wish I knew what happened to our digital camera. I could take small video clips of it.

I just wanted to log my progress a bit. Have any of you fought a journey like this?

3660 / 110,000 (0.033%)

It just sneaks up from no where some times. Everything is going well and life is productive, then suddenly a day comes when there’s not much more than basic living that I can manage. Frustrating and disappointing when it impacts goals and plans, but it is what it is.

Sometimes it seems the day blows by so fast and I was barely able to keep up with the absolute necessities. I stayed up late Tues night working on my website. Last night, while dh watched Blood Diamond- which turned out to be a really good movie - I typed up my youngest daughter’s poems. We’re having two copies bound and one donated to the Candlelighter’s dinner auction at the end of April. She’s very excited.

So, I did that, then we went to bed and I did something I knew was a mistake, but I couldn’t stop myself. Craig brought home from Borders, Predatory Game by Christine Feehan. My husband loves me. *twinkle*

I began that and I gotta say, it didn’t take long to fall in love with Jess Calhoun. Of course, being wheelchair bound myself, I keep reading about his awesome strength and workout regimen and thinking, hell, I know exercise is good for me. Why don’t I do more of it?

Then I try to imagine fitting it into my schedule with my fatigue levels. I have therapy twice a week and right now they are getting me to walk with Swedish Knee Cages so I don’t hyper extend. It’s been a couple of years since I walked so much. If I devoted each day for a month or so to working out, I’d be doing really good.

Instead, I am devoted to sitting in my recliner and writing on book 3. And having a very hard time regretting it. lol