When do you surrender?

I’ve debated writing this post for several weeks. Overall, I was worried it would sound whiny or complaining, and I honestly try not to be like that (at least not too much). Most people have busy lives and problems of their own and don’t have time to invest in my issues.  I’ve finally decided to write it because it might inspire someone else to take control of their life, before it’s too late.

red flowers

red flowers

Fibromyalgia has been a part of my days for about 10 years now , and I’ve written about it from time to time. It’s steadily gotten worse to the point where I felt pretty handicapped. Going to the court house for work was difficult–if I couldn’t get a parking place nearby, I had a hell of a time getting there. I gave up my house for a small apartment with minimal stairs. My marriage suffered and eventually ended. Daily chronic pain was unrelieved by the mild exercise I could do without causing more pain.

My grown children were sympathetic, and we tried to work out a plan where I might go stay with one of them, so I didn’t have to manage a place on my own. Of course, Little Miss would have to go along, and she’s still in school.  And I wouldn’t have a job. Or insurance. And they’re not keen on giving disability for fibro. You know, since it’s not one of those “real” diseases.

Besides, why should any of that be imposed on one of my girls? Not their fault. They’ve got their own lives.

So, nothing worked out. Better yet, this year I’ve had a steady stream of diagnoses. Both knees’ cartilage totally destroyed. Torn retinas causing flashes in night vision. Sleep apnea. Neck and back arthritis. (Getting old just isn’t pretty, folks.)

Overwhelmed, I started wishing that whatever was wrong with me would just escalate and end me before the summer came and I had to make a decision. If I was dead, I wouldn’t have to deal with it any more…the day-long pain, the things I couldn’t do for myself any more, the knowledge that there would likely be more and more things like that. Sure, I could keep taking two Vicodin a day and muscle relaxers, and more and more anti-inflammatories that were eating away at my liver.  It wouldn’t make the pain vanish, but made it tolerable most days.

This is from someone who has a reasonable income that provides for our needs, an education, transportation, food on the table and a roof overhead. I can’t even imagine how this goes for someone who doesn’t have these things.

autoimmuneAnd then in late August, I got the topper–gout/arthritis and rheumatoid arthritis. For those who don’t know, the latter is an autoimmune disease. My body had become so dense with inflammation, that it was attacking itself, no longer able to differentiate what was good and bad. That’s why my ribs ache. That’s why my knees are shot. Probably the retinas, too. I’d done it to myself.

That could have been the end.

Instead, I found myself galvanized into action. I’m still not sure what the difference was, but finding myself under official attack must have kicked my competitive nature into gear.  I started reading about RA and some of the treatments out there. I consulted with some friends about it, what worked for them, what didn’t. One of my daughters had a family that had gone on the paleo diet to help with my granddaughter’s thyroid issues, and she extended a hand. My sister Shawna had recently received a spinal arthritis dx and she was dealing with the same thing. I signed up for a monthly healing seminar. I have support.

I could do this.

The dietary changes to reduce inflammation seemed like the best first step. The next day, I went to the grocery store, armed with the AIP list of foods to eat and foods to avoid, and I’ve followed that for over six weeks now. Is it a bitch to eat no dairy or eggs, no beans, no nightshades (tomatoes, peppers, eggplant, potatoes), no grains, no nuts or nut products, oils, etc, ? You betcha.

But my pain has dropped about 75%. Yes. I said 75%. My energy is up about 50%. I might take two Vicodin a week, instead of two a day, and some weeks not even that. I’m in physical therapy and try to walk on the days my knees don’t hurt–and there are those days. On cold rainy days, I used to curl up on the couch, unable to move. Now those days are just like any other day. I’m winning the battle, for now, anyway.

That’s all I can do. One day, then the next day, then the next.

Because I’ve got a lot more days out there, and without all the suffering, I know I’ll really enjoy them. I finally scored an appointment with a rheumatologist at the Cleveland Clinic for next month, so new options will become available. There may come a time when I have to give in, but I haven’t reached it yet, not with this new lease on life. Supporting those with chronic pain is hard. But knowing someone else’s outstretched hand is available– preferably holding a couple of spoons!–is priceless.

Summer trip, Part Two

DSCN0611I’ll start with the view from our campsite at Curry Hammock State Park which was interesting in a number of ways, including how close we were to the beach, although pursuing the wildlife was much more fun. The park is “green”, so the restroom/shower facilities were all specially designed to fit with the local ecosystem.

The wildlife that popped up all around our campsite included some fabulous green iguanas like this guy:

igianaThe area, though is known for its blue crabs, which had hideyholes in the ground all over the place, several around the campsite itself. My daughter had the chance for prolonged conversation with some in the mornings, since she is an early riser, but I didn’t get to see so many.

Out time in the Keys sadly came to an end, and we headed north, where M and kids rented a car to head home, while we stayed in Satellite Beach with a friend of mine from the old newspaper days. It was two days full of fun, great food and success!new adventures.

Linda’s friend Rob was so generous with his time–one afternoon, he took the girls to his neighbors’ dock. Here’s the result–they each caught one!

success strikes againAnd yes, Mr. Redfish was delicious.

While we were there, we also had the chance to visit Kennedy Space Center. Yurie was excited to go there because of the rocketships and the history. Little Miss just went for one reason:

DSCN0637Yes. Angry Birds in Space. A whole building devoted to it, with a maze, and games, and the opportunity to sling birds at pictures of pigs. What says space travel more than that?

She actually did pay attention to several of the other exhibits (though she was still pretty obsessed with the Birds), as she demonstrated in later conversation. We took a bus ride out to see some of the outbuildings (including the one where Rob works!) and then came back to sit through a mock-up of a moon landing, which was cool (especially for those of us old enough to have watched it on live tv) .

DSCN0630

DSCN0632It was great reconnecting with Linda. We’ve both gone on to interesting lives, she as a counselor/teacher and me as an attorney/writer. But to take just a moment to relive those escapades as young writers–driving out onto the flight line at the air force base, checking out the drug hangouts in Florida City and nearly getting nabbed by the DEA–was awesome.

Then a sad day as we drove to Miami for Yurie to catch her plane home to Japan. We all survived the logistics of getting her to the airport during rush hour in Miami in a giant RV, AND of getting her multiple suitcases to the baggage carrier successfully (and the fact that the Miami Heat apparently won some sports event and we could have been marooned in city traffic for days, but we didn’t know it at the time). Goodbyes were tough. We’ll miss you, kid.  😦

The next leg of the trip was to Fort Pierce to visit another old friend of mine. We were both a little worse for wear for the years that had passed, and both dealing with chronic pain. But it didn’t stop my friend from being a delightful hostess, and we had a wonderful couple of days. Here she is with her friend going to a Mad Hatter party:

DSCN0642She looked great, and I’m so glad we stopped to see her. She lives in a beautiful condo overlooking the Atlantic Ocean, and invited me to come stay with her on a more permanent basis. Have to admit, I’m keeping that in the back of my mind. There are worse choices.

Little Miss was more delighted with the two miniature dogs living there:

DSCN0644They were cute, but definitely fonder of her than of me or other visitors.

Finally, north to Asheville, to complete our travels, to visit with K and her lovely partner L. We always have a good time with them, and they work so hard at creating a life together with L’s son, even though the state of North Carolina is much less than helpful in its acceptance of gay rights. We took the chance to do nothing a lot of the time, preparing for the long drive home, and took advantage of the KOA’s nice facilities, pool, park, etc. to just let go.

DSCN0654poolAnd of course we visited L’s new job–Asheville’s Ultimate Ice Cream shop. With unique flavors like goat cheese and bing cherry, chocolate and ginger, and even caramel with blue cheese (to DIE for…), it was an amazing tastefest. That was before we got the maple and bacon ice cream.

Yes, I said bacon.

It was unbelievable. Please put it on your bucket list. Right now. I’ll wait while you get a pen.

Hard to believe all this fit into 16 days, but it had to come to an end eventually. What didn’t come to an end, of course, was the pile of work waiting for me when I got back. But then that’s what the real world is about. Time to start dreaming of next year’s vacation!

 

 

Ring out the old, in the new–the important part is in the ringing!

It’s always a toss-up at the end of the year: look back on the year that’s passed, or set that aside and concentrate on the year ahead. Or both. I think that’s the kind of year it’s been for me.

Personally, the year has been a hard one, as we’ve struggled with the issues of our special-needs kids, some of them improving, others not so much. The stress has taken a toll on the marriage, as so often happens. We’ve both retreated into virtual worlds, finding life we can control there. I suppose it says something that we’re still hanging together. Maybe that’s the way it’s supposed to be. We’ll find out, I guess.

We’re getting older and falling apart a little more–but that’s the way of things. Resolutions for next year include to find a therapeutic pool exercise class handy, since the Lyrica didn’t work out. Fibromyalgia is such a frustrating condition. You need to get good sleep to bolster pain management, but the pain prevents good sleep. They recommend exercise, even when you feel like you couldn’t stand to move an inch through your aching muscles. Best practice for me so far is to take something for pain and just soldier through. Hopefully it’ll be better next year.

 Professionally, though, what a raft full of blessings! I scored a part-time job with the county as an attorney for families working through Children’s Services, that came with benefits and a regular paycheck. This opened up my time formerly spent chasing new clients to spend writing.

 I haven’t wasted that time, either. In 2011, I signed contracts for five new novels to come out in 2012 and 2013. This is what my new email signature looks like now:

 Also writing as Lyndi Alexander:
The Elf Queen, 2010 The Elf Child, 2011 and The Elf Mage, 2012, all from Dragonfly Publishing
http://clanelvesofthebitterroot.com
Triad, coming from Dragonfly Publishing in 2012

Also writing as Alana Lorens:
Secrets in the Sand, a novel of romantic suspense—The Wild Rose Press, April 20,2011

 http://alanalorens.com

Conviction of the Heart, coming from The Wild Rose Press in 2012

 Second Chances, due out from Zumaya Publications in 2012

 Post-apocalyptic YA Series The Color of Fear: Plague, The Color of Fear: Journeys and The Color of Fear: Survivors debuts in 2013 from Zumaya Publications

 It took nearly forty years, but I’ve finally become a novelist. Best of all, that last YA series is the book(s) of my heart, the one I’ve sunk my soul into. To find a home for it has been the pinnacle of the year for me. I can’t wait to work with editor Liz Burton and Zumaya and get that into print.

But not today. Today I’m tending to my neglected blogs, which have taken second seat to all my novels and galley proofing the last two months. I’m grateful to have had a plethora of guests on particularly the Clan Elves blog and my romance blog to help keep my readers entertained. I want to set a schedule for the new year to tend to each of them at least weekly. With four books coming out in 2012, I need to make sure people can find them!

Next week I’m spending reviewing Margie Lawson class notes and several other writing books I’ve purchased over the last six months and stalled off reading. I’ve got a lot of writing to do in the next year, and I want to make sure it’s the best it can be. I’m sure you all will let me know if it’s not!

In the meantime, I wish you all a satisfying 2012, in whatever flavor and definition that means to you. Our family will be celebrating a new arrival in the spring–one that’s not between two book covers!– so we have much to look forward to, as well as travel, family and hopefully some sun here and there. May you have many blessings come to you and find that the dream of your heart comes true.

 

Bygones

In the past few months, I’ve come to realize that some phases of my life are past. For good.

Up until then, it always seemed like every option was open, like back when I was 10, or 18, or 21, or even 25. One day I’d travel the world. One day I’d be President. One day I’d be an astronaut. You know, all those things we dream we’ll be or do.

Besides the rather obvious one, as a woman matures past child-bearing age (which I thought I’d taken care of surgically much sooner, but I still got three more kids anyway. Funny how that works.), more have become apparent.

For eight or ten years, I volunteered for the local hot air balloon festival, crewing with out of town pilots to help get those wonderful, living, breathing baubles into the sky for a weekend every year.

We had some real adventures. I learned I don’t know how to back up a car with a trailer on the back. (You turn the wheel which way? And it goes where?) I lost a pilot once because his kids left the walkietalkies on all night and killed the batteries. Most of my family got to ride in a balloon, one time or another. I didn’t, though I wanted to.

The last couple of years, I’ve seen the call for volunteers and realized it’s something I can’t do any more.  These kids can’t help, the way my other children could. We can’t do it as a family. That takes the fun out of it, really. So balloons, at least from the participation end, have become part of my history.

I used to have a true jungle of plants in my house, every room filled with green leafy things. I just don’t have time in my schedule to maintain those like I did when I was a single mom of one normal child. Outside gardening I’m forcing time for because our mini-farm feeds us as well as others over the summer days, but other plants? Not on my list any more.

Always dreamed I’d go around the world, even before I applied for  Fulbright back in college. I’ve even filled out a passport application, but I don’t see any sense in turning it in. Travel costs money, and with the current economy, my clients can’t afford to pay me. What we get barely keeps us running, with just a few extras. So world travel needs to wait until my next incarnation.

I reminisce often about our Tea on the Veranda days, back at the Mango Corral, where Sunday mornings were spent out on the deck by the pool in the middle of a ten-acre grove of tropical fruit trees, listening to Jazz in the AM on the radio (apparently another bygone –now it’s Top 40) and reading the Herald. Once in a lifetime opportunity, and I’m glad I had it. But I still miss it.

I used to be a fairly mobile person, too. We moved from Ohio to Montana, to Florida, different houses, different towns, but we’ve been in this house for 16 years. Because of the children’s mental health issues and the excellent local services they can get, we’ll probably be here another eight years. Same vistas, same opportunities. Not that it’s bad. It’s just another option that’s lost.

The fibro, of course, limits other activities, depending on the day and the weather. Mountain climbing? Not in the immediate future, thanks. Line dancing? Always fun, but not likely when we can’t find someone to watch the children.

The question, of course, is do I have to let these things go? I suppose I could force participation. Spend our limited resources for vacations we can’t afford. Leave the fam at home and help with the balloons.  Or does there come a time when we can gracefully let go of experiences that we enjoyed dearly, and go on to new ones?

What do you think?

Blogs: time vampires

Back in the day, I had a diary. (No, children, we did not carve words into stone tablets in those days. Really.) So my original understanding of a blog was that it was just like a diary. Except on the computer, and open to anyone to read.

In the past year, I’ve found that a blog is very different. A diary you write in, when you remember, and if you don’t, then it’s still there just as you left it, in the same condition and with the same level of investment.

A blog is a demanding child that needs constant attention to thrive, and threatens to distract you from any other meaningful necessity in your life. Once you make the initial investment based on your purpose in creating it, you have to justify that investment and keep tossing more fuel in to maintain, much less expand and grow.

I started this blog for several reasons, not the least of which was to leave the stone tablets behind. It’s the 21st century, after all! But I wanted to seriously pursue the business of writing, so I created what all TPTB were calling a “platform,” and also a space where people outside my own circle could read what I wrote. I now have a worldwide audience, based on the comments and emails I receive.  Cool, huh?

I also wanted to connect with others who have children with special issues, because as much as the professionals have to offer, sometimes hearing what whacky technique worked for another mom or dad is just the thing that will reach one of my kids.

I’m pleased that I’ve accomplished what I set out to do. At the same time, I struggle sometimes with the time commitment the blog requires. I try to write at least two posts a week (although some current thought is that’s too much), half an hour each for creation and perhaps more time for research, if I’m creating a well-rounded post with links and pictures for real educational value.

I’m delighted to receive comments, and I like to respond to those who’ve been kind enough to acknowledge my writing. Another 30-60 minutes a week. I return the favor by reading other’s blogs, particularly those in my blogroll, an eclectic batch of very interesting people and advice columns, and one just for plain fun and a creative break. Another hour a week.

To find out what other people are doing with their blogs, I study the WordPress Dashboard everyday, where people’s latest posts are listed on a rotating basis.  I’ve learned some interesting things there–not everyone on WordPress is American, so there’s a broad world view. Another 15 minutes a day.

But I want to grow the blog, so I venture off the WordPress safety net and out into the Interwebz. I belong to Blog Village, where you can list your blog in a little community that’s not quite so overwhelming. You have to sign in at the first of each month to keep your place there. Another 15 minutes a month, catching up on what’s new. I’ve promoted my writing with pages at Redroom, the Polka Dot Banner and Pennwriters. Each of those sites requires a certain amount of maintenance and interaction with the other members, probably an hour total a month. More would be better. Then there’s Linked In. And Myspace.

To reach a broader audience, I also seek out blog carnivals. This month, for example, I was featured in the Freedom and Privacy Carnival, the Carnival of Positive Thinking , the Carnival of Family Life, and the Fuel My Blog Carnival. Another hour or two in deciding which posts to enter, then reading through the lists to see where I fit best. The effort is worthwhile, because I come to the attention of a cross-section of people I would not have encountered otherwise; many come back to visit once they’ve been here.

The Wellsphere connection I’ve been very happy with. In addition to the honors I’ve received, I’ve been able to answer questions about autism, at the same time I’ve been able to find information for fibromyalgia and stress relief. But there goes another two hours a week.

Guest-blogging is wonderful, and I never turn down an opportunity.  This week, I’ve been invited to guest at Petit Fours and Hot Tamales, a romance writer/reader site, and that will appear Friday. Next week, I’ve been tapped for an entry at Gardening Nude, on community building.  These entries, because they’re more formal, tend to take a little longer, maybe an hour each.

With my job, and my family, and my writing, this is frankly all the time I can spare, and it’s really not enough. Other bloggers I know swear by Facebook, and insist you can’t get anywhere without being on Twitter. Networking is the way!! they wail as they are hauled off to the lunatic asylum or hospital muttering about pixels and keyboards. It’s true.  Networking is the most likely way that you will make those few connections that will set you where you want to be. I’m just moving in that direction at that old brontosaurus pace, slow and steady, hmm?

In the meantime, if you find something you like here, do me a favor. Network the old way, and tell a friend.Your kind act will free up some of my time so I can sit with my child, take a stress break, or maybe tell another story.

I’d appreciate it.

A wandering mind

One point of wonder for me about the United States is that our country has such a variety of climates and geography, all available inside our borders. Whether you prefer living by the seaside, at the foot of mile-high mountains, among the prairie dogs or amid a skyscraper jungle, most people eventually gravitate to the area of country where they will be comfortable.

I’ve been fortunate in that I’ve lived in many of these areas. We spent the better part of a year in Missoula, Montana, with the Rockies and Glacier National Park as our backyard. We had more than a decade in south Florida, with the Keys and the Everglades to explore. Pennsylvania has many points of interest as well, being a few hours from Niagara Falls and several big cities with diverse populations.

We’ve visited so many more, and I’ve always had a hankering to return to the Taos, New Mexico area. Oregon and northern California were also appealing. New Orleans was fascinating (we visited pre-Katrina), but even then I’m not sure we would have wanted to relocate there. The saying about those living in Florida getting “sand in their shoes”–i.e., always needing to return– is one that rings true for me also.

How do you decide?

Work obviously necessitates making sure you can be employed in your particular field, at least if you have a family to take care of. I must confess,  as we approach 20 years here in the same place, I’m envious of those with no real estate, no ties, who can pack all they own in their car and head out for new adventures with just their hopeful attitude in their pockets!

Health concerns are next on the list. The Cabana Boy reminds me often that fibromyalgia sufferers would do better out of the cold and snow. On the other hand, Pennsylvania has outstanding coverage for kids on the spectrum, and that’s not something to drop lightly.

With economics at the forefront of everyone’s outlook, that’s something else to factor in. My work is more likely to grow here; the Cabana Boy could easily find work in a hundred other places. But we’re both working here. Sadly, that’s more than a lot of folks can say. B tells us that in a recent class of her environmental ed students, 40 percent of those kids’ parents got laid off in the same week. It’s not something we can take for granted any more.

Neither are basic necessities like fresh, clean water. I’ve become sensitized to this subject lately, and I find we are living in one of the few areas in the country–maybe the world–where we are pretty much guaranteed fresh water year-round. (Probably because of all this stupid SNOW. But it serves a purpose besides making us miserable.)

So we’re here now. And we’re doing okay. We’ve got our eyes open for possibilities, though. What other kinds of fascinating places are out there yet for us to explore?  Let us know!

***

And here’s a shout-out to Janie over at the Carnival of Family Life–thanks for featuring my post!

Take care of yourself, too

Parents, for the most part, put their children first, and then relegate themselves to second place. Or maybe third. Or maybe tenth. Or maybe 100th.

This is especially true of parents of children with autism and other developmental disorders. By the time you get the child’s school work together and arrange for the occupational therapy, and the TSS comes by and you make all the other doctor appointments, and teacher meetings, and team meetings, and IEP consults—heaven forbid you take time for the other children who might have a need or two! Significant others tend to slip down the list as well (mine included, poor thing!)

So often you’re last on your list.

But you know what? As Yeats said, things fall apart, if the center doesn’t hold. You need to take time for yourself, both for physical and mental health. Now a new online community called Wellsphere makes it easy–and healthy– for you to improve your life.

I’m pleased because Dr. Geoffrey Rutledge,one of the site’s founders, asked me to join their community as someone who blogs on autism issues. There, I was pleased to find other familiar names from our online autism community as well, and we’ve all been tapped to answer questions and provide insight on issues that people may encounter.

The site includes so much more, including interactive goal-setting and rewards for achieving those goals, forums on many, many health issues (I’ve really learned a lot about my fibromyalgia since I’ve been checking in!) and also just simply providing great ways to help you stay on track with your forward progress!

Wellsphere will launch a new service called Health Maven, where you can ask a specialist a question about whatever issue you’re having. Some of those on the list are doctors, some nurses, others have personal knowledge through their own conditions, or perhaps their children’s. I know that most of the good advice I’ve received about my children’s autism I’ve gotten from other parents–so I’m very excited about this!

Dr. Rutledge says: “Health mavens are carefully selected, knowledgeable, health experts who are committed to helping others live healthier, happier lives.  Hundreds of Health Mavens have volunteered to join the program and answer questions, with new Mavens signing up every day.”

“We’re witnessing an incredible growth in the number of people using the Internet to find health information” said Wellsphere’s CEO Ron Gutman.  According to an iCrossing research report, for the first time in history people with health questions are more likely to turn to the Web for answers than to their doctor.  “Recognizing this trend…we assembled the world’s leading network of over 1,800 medical and patient experts to share … with Wellsphere.com’s almost 3 million monthly visitors. We are humbled by the experience, expertise and genuine care these wonderful individuals share every day with people who come to Wellsphere looking for answers,” said Gutman.

So come by–click on the button on the sidebar and ask your questions!