Thought this picture of George said it all!  I’m really not sure if the next phase of my disease progression would have happened without the scleroderma, but it sure wasn’t a lot of fun!  (still isn’t!).  Shortly after the initial round of diagnosis and adjustments, I ended up with severe diverticulitis.  I tend to think it was due to the fact that the scleroderma slows down the digestive system to the point that it is definitely moving in slow motion!  So, things easily get hung up going through the pipes!  Either way, this first round of problems ended up with three hospitalizations, tons of missed days, and finally surgery to remove five inches of my colon…fun, right?

It is insidious, this slow digestion thing.  You get a bit of heartburn from that “bad enchilada”?  It’ll be gone in a bit, right?  How about eight hours later you’re still struggling with it?  Nausea?  Well, this is what happens when last night’s dinner hangs around a bit longer than it should.  Nausea is my middle name now, affecting 90-95% of my waking hours.  Sometimes it’s not bad enough for meds (I don’t want to be reliant!), most of the time though meds are needed.  Either way, it is challenging!  I look green?  It’s not you, darlin’!  Really!  I always look this way!  (smile)

Then there’s the on again, off again “flow” through the system.  In other words, it’s either all or nothing for the “tail end” of the digestive process (ahem! I am a lady, so fill in the blanks!).  There is no normal with scleroderma…except that no normal is normal.  Complicated by my very, very odd allergy to “live cultures” such as acidopholous, which would normally be used to help my poor old, slow mo’ system out, life can be quite an adventure!  One never knows what’s going to happen, when, or where!  Bit of “visiing the porcelain pillow”?  Why not now?  Run, run, run?  Why not?  I think you get the picture.  But look at the positive…I do get a lot of exercise just keeping things under control!

 The impact on all aspects of digestion are a bit overwhelming at times, though, for I do love to eat (no, I’m not 300 pounds!  But, no slim miss…yet…either).   With life revolving around your digestive system, eating becomes a daily “internal” dialogue!  To eat that dish I really have been craving for (I do love enchiladas!) and suffer or be good and be bored, looking for snacks!  Hmmm…..now that’s a quandary we can all identify with!  I won’t give up that pizza, but it’s not a daily food item anymore…darn!

So, accept, adapt, appreciate?  I’d have to say as part of this post that this aspect of the disease remains my greatest physical problem and greatest emotional challenge.  As my allowed food groups shrink (we’ll see more of why in the next post, which will be delayed due to an upcoming trip for another one of those fun procedures!) I do fight the “doggone, I’m going to do what I want!” response more and more.  But heck, this just sets my challenge out clearly, don’t you think? I can use all the help I can get here!

Munch those cashews for me, my friend, and eat my strawberries, but don’t touch that slice of sausage and mushroom pizza!  Hugs to you all!

Have a great “T” day!

There are many ways that scleroderma can attack your internal organs.  For many of us it starts with the digestive system.  This is the major impact for me, so today will be just the first in a several part discussion of what it does to you.  Let’s just say every day is an adventure!

One of the first signs they warn you about with scleroderma is difficulty swallowing.  Why?  Because for some reason the disease really likes to start its march through your body in your esophagus!  As you struggle to swallow at times even small bites of a bagel or piece of toast, you get the feeling something isn’t quite right, but you ignore it.  Just a quirk, you say.  That is, until other signs start to pick up.

For me, the first stage was the travel down my esophagus, triggering an age old hiatal hernia into full bloom followed by GERD (gastro-esophageal reflux disease).  Wow…if anything can turn you off of coffee, what used to be a staple of my life, GERD can!  Yuck!  So, phase I for me was discomfort, painful swallowing from top through middle of the winding path to the tum…followed by hours of reminders that perhaps what I had eaten was a bad choice!  Many things taste good the first time around, but subsequent trips not so good.  But, being who I am, I continued to ignore these symptoms, simply noting that my digestive system had always been sensitive, so this too would pass.

As we’ll see tomorrow, what was to pass wasn’t quite so easy to ignore.  But, for all of you out there struggling to get that breakfast sandwich down, take a second and pay attention to your body!  It is the first internal signal that something is amiss.

So, having sounded a faint alarm bell, I’m going to sign off as this story will take several posts to unwind itself.  There’s a lot of insides to our insides!  For that, you’ll find out, I’m very glad!

Remember, no self-pity on this end…just a story to tell that may help others feel a bit of comfort…you are not alone and there is so much life you have to live yet….enjoy each moment, for remember our goal…accept, adapt and appreciate!

Have a great “T” day!

When I try to describe scleroderma’s impact to someone, the first thing I always do is hold out my right hand (my left hand is beginning to follow).  What they see is a crooked mass of fingers that can no longer be straightened.  I then say, “What you see in my hands is what it is doing to my insides.”  So, as my hands go, so goes my health overall.

I know many people get totally clawed..and I guess I hope I live long enough for that to be the case.  For you see, as I said earlier, getting something like scleroderma makes you appreciate life, not wish it away or blindly ignore its passage.  And, it is the weakness in my hands that first caused me to slow down, which was a very good thing.

Today?  They hurt more and more.  Swimming can become agony, but then, aren’t you supposed to break a sweat exercising?  Since I’m not sweating I should at least know I worked out!  And, bit by bit they’ll get weaker, so George can flex his manly muscles even more to help open those jar tops!  So you see, there really isn’t anything gained in pulling the covers over your head or complaining….Accept, adapt, appreciate, remember?

And, how can the post not end positively with such a beautiful shot taken outside Pompeii…where the shortness of life is made oh so clear.  Did it matter whether those people were young and strong or old and frail?  No.  Life begins and ends as it should.  Relax, quit trying to run away from the Grim Reaper, and carefully breath in each moment of your life, holding those you love dear and politely ignoring those you are less fond of.  Live, love, laugh!

Have a great “T” day!

I thought today I’d start at the beginning, when I first found out that I might be facing some unexpected challenges.  It was a busy time.  George and I had set a wedding date and decided on a destination wedding as we really only wanted family, which would be hard to pull off if we stayed near home.  So we set up our plans for Hilton Head, SC.  As we were juggling these additional “stressors,” I developed a severe and painful rash in my mouth.  Eating became agony as the open sores were sensitive to anything that passed their way.  Put a canker sore on steroids, spread it around everywhere, and voila’…Oral lichen planus.  This was my first diagnosed autoimmune disorder.  It came with itchy wrists from a rash and a huge rash on my upper legs.  And it hurt.  We made little progress with the regular doctors, though, and I was feeling a bit punky, so we went to a holistic doctor, Dr. Noe.

Dr. Noe was a no-nonsense physician.  She immediately sent off for every blood test she could think of, certain that other autoimmune disorders were lurking that would explain other symptoms.  And, sure enough, the scleroderma markers showed up and the diagnosis was made.  That led to horse pills taken by the dozen, which ultimately was the demise of my care under Dr. Noe…for you see, I already couldn’t swallow very well, a prime scleroderma symptom.

We went ahead with the wedding, though, setting the concerns about the diseases aside so we could enjoy the time.  We did too much, of course, but then, that was who we are.  It was a memorable wedding, and right there I knew I had gotten very blessed in later life…for George could have understandably said, “Gee let’s wait and see how your health issues pan out.”  He never once mentioned this option.  He was simply at my side.

Beside the problems swallowing, the main thing that was bothering me early on was that I was dropping everything.  Unless I paid very careful attention to what I was doing (slowing down, oh lord!) I could think I was holding something only to find out I wasn’t.  That was the first symptom of the impact on my right hand.  I didn’t really feel any differently, but my hand strength and coordination faltered.  But, I was in denial, so I didn’t go to a traditional physician for over six months after the diagnosis.  Guess I didn’t want to learn more and as long as I didn’t it wouldn’t happen. After a bout with a dermatologist who flat out stated Dr. Noe had no right to make a diagnosis and that scleroderma diagnosis was a ticket to death, I started to realize I’d have to face the thing straight on.  So finally, as the dropsies got the better of me, off I went to Dr. Silversmith, a local rheumatologist, who came back with exactly the same diagnosis as Dr. Noe had done six months earlier.  So now I had two severe autoimmune disorders…and was quickly also diagnosed with Raynaud’s, which made for the tri-fecta.  And that is where it all began…having to accept that I did have challenges ahead and would need to alter my plans for the future.

Tomorrow I’ll move on to how the disease spread and what it meant as it traveled through my body.  For today, let’s say the hardest part is finally accepting you have the disease.  Two doctors later there was no denial.

But, with acceptance comes wisdom and adaptation, as we’ll begin to see tomorrow!

Have a great “T” day!

Today, if my darn fingers will obey my brain, I will start to ponder a request from the dedicated professionals at the Scleroderma Foundation to write about scleroderma for children and teens.  Quite a challenge, as it forces me to actually face what it DOES mean to a person.  That is something easier to duck, it seems, than to face straight on.  So what if my typing is decaying due to a lazy, slightly crooked hand?  So what if I need to rest more and more, feeling that the hours of waking are slowly fading away?  Ah…so what?

So I am going to do a series of ramblings about the very disease process that brought me to writing for children in the first place.  Perhaps in these musings I’ll come to a place where I can write with both joy and honesty to such a young audience.  Perhaps once again I need to think how to explain it all to grandchildren who may not quite understand why Grandma is tired so much and that we see so much less of each other.  We’ll see, as this form of reflection is a painful path for me.

What scleroderma has meant to me is having a pin put into a balloon that was always full of energy, floating happily from one task to another, multi-tasking with ease while constantly expecting more from myself.  I was boundless energy that crashed about every four months, slept an entire day, and was off running again.  Down time?  I knew no such thing.  Contrast that with today where I take a day to recover from simply teaching for five hours…sitting, I might note…to a very small class.  I sleep the sleep of the dead so much of each day now that the waking hours are the unusual thing.  And, I remain tired and dizzy all the time.  But, stubborn…no one but George is allowed to see me struggle.  For the rest of the world, the picture is of just a slower me, but not necessarily a different one.

But scleroderma is changing me.  For one thing, while I still plan a thousand events and projects, I am learning to focus and finish one for that is something I believe I can still do with my former quality.  I have less patience for politics, less desire to engage in any form of fighting (whether of the academic or personal strife form), and more desire to just sit peacefully and read.  So in many ways, scleroderma is a blessing, forcing me to slow down and notice the world around me.  To pay attention to what really matters…the people who make life worthwhile.  Hence my ongoing dedication to that small group of students who have bonded with me at the Academy.

Scleroderma, though, is not a kindly friend.  It takes a bit of your energy every day, permanently leaving you a little less to go on.  Hands and feet cramp painfully, making even the glory of my morning swim at times an agony of stops and starts as I try to force my feet to do their job (how one can pull dead weight thru water I do not know!).  It robs one of dignity, as a digestive system becomes one’s greatest enemy.  Just eating can bring on a wave of discomfort that makes no real sense but is real nonetheless.  Lady’s aren’t supposed to have flatulence, right?  Wrong.  If you have that misconception, saddle up close to a woman with scleroderma and you might get more than you bargain for!  UFF DA!

So, today is just a ramble to begin to shape my thoughts around the challenges I face now and to start to make myself think thru how to most optimistically handle the challenges that still lie ahead.  And, it will provide us food for discussion or at least thought, I hope.  And Sandria, if you read this, thank you.  I will work on getting to the right place to do the task you’ve requested.

Have a great “T” day!

This man sits every day in this spot on the Erin Islands, playing his accordian and waiting for the few hearty tourists who make the trek across Galway Bay to this little cluster of islands that are more rock than dirt, yet where wild flowers abound upon every morsel of dirt.  The islanders haul the dirt up from the edge of the ocean to provide the means to grow their crops, which are neatly segmented off into six foot plots fenced by, what else, rock walls!  While it seems a bit bleak, there is also a deep charm amongst the island and its peoples.  Drawn by horse or donkey carts, you wander along the island’s few roads seeing graves where family may reside.  Many Irish settlers to America came from the Erin Islands, as did my husband’s.

But today’s theme is why blog?  Perhaps for the same reason this man sits playing all day…because they may come?  Yet even if you can figure out why you blog (does the world need these comments or could it spin blithely on its course unfetterred by their uttering), what to blog every day becomes quite a challenge.  I’ve run through the family that inspired so many of my life lessons, talked about the book events we’ve done, and the reasons behind some of the stories.  You’ve read through discussions of how I was formed professionally by the Power of Threes, and seen some of the better photography I’ve taken in my life.  That all said and done, I repeat, why blog?

I have to admit much of my blogging is due to a commitment I made to everyone to try to make this company a success.  So many fine people have put their time and energy into what we are doing that for me to fail to keep up this end of the bargain is simply not right.  But, unless I move beyond the rhyming of books, how do I keep such a site going?  This question is what awakes me each morning, wondering what to do next, what corner to peer into, what rock to kick aside.

For today, it is simply a “why?”   It shall have to suffice.

Have a great “T” Day!

One of the next themes is procrastination, a talent I have in spades.  Have you ever wondered why we sit and doodle, only to have to run full tilt ahead (watch out!) to get done the things we’ve committed to?  Oh, I know not everyone is afflicted with this “syndrome,” but for those of us who are, I wonder why?

I tell myself often it’s because I don’t allow enough real down time, so I steal it from my days, always chock full of “woulda’s” and “shoulda’s” as otherwise I wouldn’t give my mind any rest at all.  That seems like a reasonable self-defense, but there is also the truth that I work best under pressure, so perhaps I’m just waiting until my valve is ready to pop?

Either way, I do wish I could do more creative doodles!  Sometimes my doodlin’ takes the form of spider solitaire or mahjongg solitaire, others drawing endless coffee cups seeking just one that is actually true to shape!  I’m sure you have your own forms of distraction…but are we truly so in need of distraction from life.

Perhaps this is the lesson for today…we doodle because we must.  For unlike other mere mortals, if we don’t plan activity for every waking moment (and we don’t count reading, etc) we feel as though we are lazy, not doing enough.  But the body and mind have their own needs, and when we don’t listen to them, we falter.

So in “Doodlin” the book (number eight I believe) I’ll be working with Wil and T to unlock this mystery and find a healthier way to deal with the need for both physical and mental rest in our lives.  It’s ok to say “I’m going to do absolutely nothing” when answer the constant query of “What are you going to do next?”  That may be the key to freedom…to relish in the doodles as they restore us for harder tasks.

Have a great “T” day!

Today’s theme is as much as question as a blog…for it is a quandary that keeps rearing its head.  As most of you know, I have published extensively in my career, everything from lengthy books to concise pamphlets, articles galore for all sort of outlets, and so forth.  The children’s books are simply a new genre for an old hand.  In almost every case I have done so with editors having little to offer.  I take pride in my craft.   So why the question?

Editors, I know, play a role in the writing process, but in my experience not always a positive one.  Often trying to remake the book in their own image of what it should be, the life can go out of the writing in the quest to eliminate that last split infinitive.  But is not creative writing simply that?  Does following mores’ and grammatical structures take precedence over creating a “feel” with the words, their flow, their meanings? 

This question came up during a recent meeting where it was suggested that a good edit would have made our books shorter and geared toward less “gifted” children.  I question this assumption and would love some feedback, for I didn’t write the books with a gifted child in mind, just one that is today learning to read in kindergarten!  All I learned in kindergarten was how to take naps and how to dip graham crackers in milk that came in a container instead of a glass!  Today’s children are rightly being brought to the stage of reading and comprehension earlier than we were in the 50′s.  So why the concern about editing?

Would an editor take out the rhymes or try to change sentences so they were not as funny but more “correct.?”  The answer we came to was “yes,” when our first foray with an editor had the pages coming back unrhymed, which is not good for a rhyming series!  As for shorter, I often feel pushed to get the story in with the 30 pages I’m allowed…for children’s books are traditionally 32 pages with title page and front matter.  So how would shorter make sense?  Easier?  I realize there are some big words in the books, but when I see the stories my grandson is reading at age 6, they are not any more difficult.  Children, as with all students I have found, will stretch only as far as you make them.  I see no reason to pretend they can’t do something when it is clear they can.

So, I avoid editors, but assume there are editors out there who could help my work.  I’d be glad to make their acquaintance before we get Bab’s book to market, but will they attempt to take the “sass” out?  I’d bet dimes to donuts they will…for you see, a book has to reflect the voice of the author, first and foremost.  Bumpy English?  Sometimes debatable punctuation?  Are these what make or break a book or is it content and story after all is said and done.

Hope this time I at least kick enough dirt that we get a dialogue going!

And, have a great “T” day!

While there are probably a thousand things I could write about today, all that comes to the front of my mind is how beautiful a day it is.  We’ve gotten past those horrible hot days of summer yet fall is still holding off.  The pool is a might chilly, but I’ll swim in it until I can’t stop shivering…and that’s a ways off.

There are days when all we need to do is appreciate nature’s handiwork, enjoy friends and family, and take a deep breath, breathing in peace and breathing out all the accumulated stresses and strains of daily life.  If we don’t stop once in a while, we can lose ourselves in the activity trap, and in so doing, lose the meaning of life. 

I’ve spent the past few weeks exploring the influences (people) in my life that have led to the stories and the drive to tell them.  Just as important as people, or at least a close second, is the world around us.  The beauty of a gorgeous day or a stormy one–ever changing nature at its finest.

So relax today, talk a walk, play with the kids and your pets…and say a brief thank you to whatever powers you believe in for the glory of the day.

Have a really, really great “T” day!!

Ted Watts has been a dear friend for over 25 years.  We met at a conference in Manchester, England, where after a VERY long trip to get to the campus, I walked out of my dorm room (oh I hate to stay in dorm rooms!) and asked loudly, “Does anyone know where to get a beer around here!”  (Even then I was rhyming.)  Ted’s head popped out of his room, he walked with me to the Rampant Lion, and we’ve been friends ever since.  The hard decision was whether to put Ted in the friends category or co-author.  He is, in actuality, at the head of the line for both.

As a coauthor, Ted is like Lidija in many ways.  He is dogged determined to place every article.  But, he brings even more to the table as he knows literature (the weird stuff I call it…smile) that I don’t really keep up with.  When we combine his theory with my field research observations, we get some pretty neat pieces overall!  And, Ted can find more ways to skin a cat to get multiple articles from one of my field “dalliances.”  So, because of him the back half of my career is as prolific, if not more so than the first.

But none of this is what Ted has taught me.  Several years ago Ted contacted herpes of the eye while on a foreign trip.  By the time he got back to Australia, it had done irreparable harm to his eyesight…he literally can’t see.  Yet, he finds a way to hold a piece of paper “just so” so he can make out what it says.  Now, combine this physical fact with what I said about our productivity and I think you can tell what Ted has taught me.  He definitely makes lemonade out of the multiple lemons he’s been dealt, but even more, grace under fire.  He never, ever complains no matter how bad things are.  There is an example that is definitely hard to live up to.

For setting the bar so very high, my friend, thank you.  I will try to remain as noble as you about our failing bodies…but indominantable spirits.

Have a great “T” day!