Antipandemonium

I am grateful to have a daughter her handles her challenges with strength and grace, because I’ve had my own challenges with health during the past year. 

Around the time that Deanna was being diagnosed with Dystonia, I noticed a pain in the index finger on my left hand.  When I had the time to take a closer look, I saw that it was definitely swollen.  I went to my doctor, and a set of x-rays later, I got a diagnosis of Rheumatoid Arthritis and a referral to a Rheumatologist.

If you are referred to a Rheumatologist, be prepared for a long wait for that initial appointment.  It is nearly impossible to get in for at least 6 – 8 weeks after initial contact.  Once you get there, you are blessed if you find a physician on the other end that you like and trust.  I was blessed.

RA is an auto-immune disorder.  There is no cure. 

RA is the biggest challenge I have ever encountered.  I had no idea what I was facing when I complained about the pain in my “fat finger” and the knuckles in my right pinkie, and the ball of my right foot.  Within weeks of first noticing the pain and swelling, and before I found effective treatment (which took months), I was not only dealing with unrelenting pain, but the other symptoms of RA – incredible fatigue and total loss of appetite.

Some of you may think “loss of appetite?  Where do I sign up?”  I get that.  Unfortunately, when you combine loss of appetite with chronic fatigue, the expression “life’s a drag” becomes a reality.  You literally have to drag yourself – physically and mentally – into action.   No food equals no fuel to move your body or engage your brain.  I forced myself to eat every 3 hours to keep my body and my mind working, often at minimum levels. 

Well, for me they were minimum levels.  I have always been blessed with high energy and a sharp mind.  I’ve always been able to count on having plenty of “get up and go” to carry me through whatever I need to get done. 

Now I find that even when I am careful to make sure I’ve ingested fuel, my energy “got up and went” as they say.   

I have a weighted vest that I often use when I walk on my treadmill at home.  When the fatigue of RA strikes, I generally feel as if I am walking around wearing that weighted vest.  Everything requires more effort than “normal”.

I have a full-time career.  It is often demanding.  There are schedules to manage and deadlines to meet and tasks that must be done.  There is no time for a “time-out”.  Additionally, my daughter has a “team” of medical professionals that need to see her regularly.  During the past year, she’s had at least one doctor’s appointment every month.  Now that might not sound like a big deal, but Deanna can’t drive – so guess who gets to do the fetch and carry?

On days when we see her doctors, I drive 25 miles to her home (she recently moved, so now it’s 35 miles!), then up to 50 miles (to the most important and most frequently seen doctor – who also happens to be farthest from her home!), and then back 50 miles to her house – and then back 35 miles to my house (shorter if I go to work from a morning of fetch and carry!).

This would be a challenge on any day.  Lucky for me, driving is not an issue.  And of course I would do anything for my daughter.

But I am nearly 60 years old.  This routine – carried out under the devastating fatigue of RA – just about sucked the life out of me while I was going through the process of finding an effective treatment.  Even with treatment, fatigue and loss of appetite pop up here and there.  That’s just the nature of RA. 

Auto-immune – it’s a bitch.

Until I found relief, I lived with daily pain.  I could not escape it.  The worst was in my foot.  I have to walk, after all, and getting out of bed in the morning and putting my foot on the floor and standing up was so excruciating it brought me to tears on several occasions.  I am not a crier. 

The pain also made the one physical activity I could count on – yoga – much more difficult.  I did not give up, but working on modifications for some of the poses was a big challenge.  Now that the pain is under control, I am simply dealing with lack of energy.  I no longer look forward to yoga – I do it despite how I feel.  I intend to keep doing it – but it requires commitment and discipline and resolve.  It is no longer a joy – and this makes me sad.

Treatment for RA involves drugs with a lot of warnings.  Reading the warning labels is a sobering experience.  The conversation in my head when I first did it was something like “Pain relief?  Sure – would you like a little cancer on the side?” and “Pain?  We can take care of that, but you may vomit a little.”  The first line of defense, methotrexate, was one of the original drugs used in chemotherapy.  Along with my methotrexate prescription, my Rheumatologist gave me a prescription for extra folic acid – so my hair wouldn’t fall out!

Joy!

Here’s the list of common side effects of methotrexate:  Dizziness; drowsiness; general body discomfort; headache; loss of appetite; mild hair loss; mild sore throat; mild stomach pain; nausea; tiredness.

Warnings and precautions for Enbrel include “serious infections, tuberculosis, invasive Fungal Infections, Neurologic Events, Lymphomas, Leukemia, non-lymphoma skin cancer, melanoma”, 

And mind you, this is not a complete list of side effects!  The most serious side effect is liver damage – as in cirrhosis or fibrosis.  You WILL take a blood test at every office visit if you take methotrexate – to monitor your liver function – even if you do not take the injectable form (which as yet, I do not.) 

I consider myself lucky.  I no longer have to worry about menstrual side-effects, unplanned pregnancies, nursing, etc.  There are young women who are afflicted with RA who have to be on birth-control and stop breast-feeding because this is a chemo-type drug.

Now, I ask you – would you sign up for this if you didn’t absolutely feel you had to?

The worst thing that happened when I was looking for the right treatment was having an adverse reaction to an injection on the first “biologic” I tried.  As soon as I injected the serum, the area around the injection site swelled like a balloon.  20 minutes later, I was feeling “neurological effects” and scared to death. 

The only reason I was determined to do these injections was because the first one caused such incredible relief.  The daily pain had terrible effect on my quality of life, similar to how I felt when I developed sciatica after a fall.  I did not recognize the effect this was having on me until the pain was gone.  It was as if someone had turned on a light in a dim room.  After months of running at a 4 – 5 on a scale of 1 – 10, suddenly I was hitting 9’s and 10’s.  

So despite my discomfort with all the potential side effects, the pain won out.   I took my medicine and continue to do so.   I consider myself lucky to have found an effective treatment.  I recently had a set of X-rays and compared to my baseline last year, there has been no further deterioration.  I don’t like having to take pills and give myself an injection every week, but it seems a small price to pay to avoid the crippling effects and pain of the disease.

Recently, I discovered that RA can also have an effect on vision.  Although it was disturbing, I was gratified to finally have an explanation for the loss of visual acuity I’d experienced in the past year.  All this time I’d been blaming my Lasik surgery for “wearing off”.  Now I know – part of it is RA-related. 

This is another reason to be grateful for effective treatment, and thankful that all I have to do is swallow a few pills and take a shot once a week to hold steady.  Otherwise, I’d be facing my future with the fear of becoming blind and crippled!

A word here about the practical aspects of chronic and rare illnesses – the costs.  The price of my recent x-rays was $518 – with insurance coverage.  My healthcare flexible payment account was depleted months ago, due to the demands of Deanna’s illnesses and now my own.  I am stuck with this bill but acknowledge that “at least I only have to get x-rays once a year.” 

I have always guarded my health – more than most people.  I did so to mitigate effects of what I might have inherited from birth-parents I never knew.  Without a family medical history, it is impossible to know if you are at risk for cancer, heart-disease, stroke, etc.   As one ages, it is likely these inherited tendencies will appear.  If you do not eat nutritiously and get regular exercise, you are inviting “lifestyle diseases”.

My advice is take steps while you are young to take care of your health.  I likely inherited my RA.  Deanna’s conditions came out of the clear blue sky.  Being born with a single kidney, and coming down with Dystonia and Narcolepsy – these are things that just happen.

Just a few months ago, a colleague at work was confronted with something far worse than anything my daughter or I have ever faced – a brain tumor.  To complicate matters, it was growing during her second pregnancy.  The early arrival of her second daughter in late July likely saved her life.  Two days later, she had brain surgery.  She is now facing radiation and chemotherapy.

Another acquaintance has been spending the past several months aiding and comforting his wife, who has had a relapse of leukemia.    

So while it’s been a fairly rough year for Deanna and me, we are always mindful of how lucky we are.  Our burdens are light in comparison to so many others.  There are days when that’s difficult to remember, but something always reminds us. 

Be thankful for your good health, but work to stay healthy.  If you are struggling with your weight or fitness levels, start now to overcome those issues.  Eat well, and get proper exercise.  I promise you that it will go a long way in preventing disease, and make it a whole lot easier to fight it when it eventually does show up, as it is likely to do with all of us.

It’s been over a year since I’ve written a post about my daughter, Deanna.  This is not because things have been quiet.  They haven’t.  It’s been a year of quiet struggle. 

(By way of background, you can find my original posts here http://antipandemonium.com/2011/05/14/being-an-ordinary-parent-to-an-extraordinary-child/ and here http://antipandemonium.com/2011/08/19/happy-21st-birthday-to-my-extraordinary-daughter/.)

My daughter is dealing with two rare disorders for which there is no cure.  Dystonia is a movement disorder – a cousin to Parkinson’s disease.  It’s not well-known.  That makes it frustrating to deal with people who – when they witness my daughter in the throes of an episode – think she is having some sort of seizure.  The cynical among the ignorant often think she’s probably some kind of drug addict.  The more humane think the occasion calls for emergency medical intervention.

The latter was the case three weeks ago. We were finally – after a year of waiting and two denials – about to have a hearing in order to determine if my daughter is eligible for SDI (Social Security Disability Insurance).  The fact that we even had to get this far is infuriating, but at least we were there – finally.  While we waiting for her time in front of the judge, anxiety began to build.  Deanna began to have one Dystonia episode after another – and continuous tremors between episodes.  This sufficiently alarmed her attorney that he requested that I be allowed to accompany her into the hearing, both as a source of comfort and as someone who could deal with her condition, should she have an episode while testifying.

We never got that far.  The officers of the court launched their “procedures” (which I understand, even if I do not agree with them) and called an ambulance.  Three EMTs arrived and began poking and prodding while I tried to explain that this was not seizure activity.  They took some vitals, and left.  This was enough to throw the judge’s schedule off, and get the hearing postponed. 

Deanna seemed to take it in stride, but I really wanted to kick someone.  I was sure I would receive a bill for the medical service that I not only didn’t request but actively tried to avoid.  And sure enough, it arrived in the mail this week.  Yet another battle, yet another terse letter to I don’t know who yet – but there will be a letter.    

That is not the worst part.  The worst part is that we will have to do this again – but we don’t know just when yet.  The good news is that the hearing will be conducted over the phone at the attorney’s office.  I don’t think this will prevent Deanna from having anxiety badly enough to have Dystonia episodes – but I do think it will help that I can be there with her.

But, back to the journey of the past year.

One of Deanna’s disorders – Narcolepsy – is generally treated with stimulants.  Not a great idea in a patient with hypertension.  Narcolepsy is characterized by EDS – Excessive Daytime Sleepiness, and the inability to fall asleep, or stay asleep.  For all intents and purposes, Deanna’s sense of sleep is reversed.  She is nocturnal – awake at night, sleeping during the day.  Not a great thing if you’re trying to work in the real world – unless you do shift work.  Early childhood education professionals do not work the night shift!   

She ultimately lost her job because she could not function after the Dystonia first appeared – but before we got the Narcolepsy diagnosis.  Thus, the application for SDI.  Deanna will never be able to work in the field she has a passion for and is supremely gifted at.  Words cannot express how sad I am over this.  So far, she’s handling this turn of events better than I am.

When Deanna’s Narcolepsy was first diagnosed, we tried stimulants – with great trepidation.  Her blood pressure shot through the roof and we had to back off within days.  Because the stimulants were thought not to react well with her original Dystonia meds, these were also changed.  The result – vomiting and headaches all around.  Suffice it to say I spent the weekend of this experiment white knuckling it all the way.

Thus began a nearly year-long journey to find the right combination of Dystonia medications and Narcolepsy medications, all the while balancing them with the hypertension medications.  All these medications come with some less than pleasant side effects.  There’s been vomiting in her sleep, massive headaches, and a few others that I will not name here. 

But the worst has been extreme weight loss.

When Deanna began this journey, she weighed a slim 115 pounds.  Today, she weighs 95-97 on most days, making her clinically anorexic for the second time in her life.  (The first time was due to undiagnosed hypertension – which caused headaches, which led to vomiting, which caused weight loss).  While she is finally “stable” on a medication regimen, trying to regain weight is proving to be a real challenge.  She got so small that even a size 0 or 1 was too big.  She’s in a girls size 14 for now.

I believe the most difficult part of her situation is the isolation she must deal with.  When Deanna made the decision to move out of our family home, she left behind her neighborhood and friends.  At first, I don’t think she felt the sacrifice.  She was setting up house with her boyfriend, looking for a new job, getting to know a new neighborhood, and then working in a field she really loves. 

But once she became ill, she was stuck alone much of the time.  Her boyfriend is a student, so he’s in class often.  Deanna can’t drive, so it’s not like she can just hop in the car and go shopping or to a movie – or drive back to our town to visit her friends (who are also in school or working). 

On one occasion, her friends did include her in a “girl’s night out”.  It did not go all that well.  They went to a club, where the flashing lights caused Deanna to have a Dystonia episode.  Some of her friends did not know how to react to that – and I think were somewhat embarrassed to be seen with someone who looked like she was having some kind of “fit”.  This is understandable – they are young and this is not “fun”.  There has been no repeat of the girl’s night out scenario (which is fine, because “clubbing” is not really Deanna’s kind of thing anyway.)

There have been a few other occasions with Deanna’s been able to spend time with friends, but they are few and far between because of distance and schedules.  Thus, she is isolated, and this can be very depressing.  Frankly, I am amazed that she has not gone into a full blown depression.  I’m also hopeful that in her new neighborhood, she will perhaps be able to meet new friends with whom she can spend time on a regular basis – just to share a cup of coffee or an afternoon soft drink and some conversation.

Right now, Deanna is looking forward to a trip to New Braunfels with her boyfriend for “Wurstfest”, an Oktoberfest celebration.  She will visit with her boyfriend’s family, who live there, and I’m sure she will have a wonderful time.  Such trips are rare, and she really appreciates them.  The last trip was to a wedding in her boyfriend’s family – it was the first wedding Deanna’s ever attended, and she had a wonderful time.     

As difficult as it’s been, Deanna remains gracious and cheerful.  She’s been dealing with health challenges all her life, and her strength continues to amaze me – and makes being her mother much less stressful!  Both of us remain confident that there are better days ahead.

Before I close, I need to say a word about the Affordable Care Act, aka “Obamacare”.   There is nothing worse than being the parent of a sick child.  The stress can be unrelenting.  But to add to that the stress of worrying about insurance coverage and costs is criminal.  This was articulated beautifully by the young mother at the Democratic National Convention.  She – and others like her – stand in stark contrast to Ann Romney and her dressage therapy for MS.

When she made the decision to leave home, Deanna also left school, for what we thought would be a semester or two at best.  Now, we are not sure she can ever go back to school (unless it is online).  Had it not been for “Obamacare”, she would have no medical coverage.  She would have had to be removed from my medical insurance (which I have through my employer) upon losing her status as a full-time college student.  Her pre-existing condition of hypertension would have disqualified her, even without Dystonia and Narcolepsy, from any reasonably-priced medical insurance.  Even an “affordable” policy would have been out of her reach.  Any benefits she had through her job would have been lost when she was essentially fired for becoming too ill to work.

Deanna has a “team” of medical professionals.  Among them, a neurologist for the Dystonia, a nephrologist for her chronic hypertension, a specialist for Narcolepsy/Cataplexy, a psychologist, and an OB/GYN.  She has had an appointment with at least one of these doctors – often two - every month for the past year and a half.  Every visit costs money.

Deanna is also taking a variety of medications: two for her chronic hypertension, two for her Dystonia, and three for her Narcolepsy/Cataplexy.  Every one of these medications costs money.  One of her sleep medications costs $5,000 a month alone.

Fortunately, thanks to insurance coverage, we are not paying $5000 for that sleep medication.  But what about the people who need it and don’t have that kind of money? 

What about people who suffer from chronic health conditions which were NOT brought on by “lifestyle choices” who need life-saving medications every day just to stay alive or to face life with some symptom-control or pain relief?

And even if you do not yet have such a condition – and trust me, if you are lucky to live long enough, one of them is likely to visit you – or have a family member afflicted with one, you know someone who does have this kind of problem. 

I happen to be among the people who believe that lifestyle choice contributes to many chronic disorders (hypertension, diabetes, obesity, heart disease, even cancer) but there are some – as in my daughter’s case – that just show up, and for which there are no changes in lifestyle, diet or exercise patterns that will make these conditions better.  Taking “personal responsibility” for our health – for many people – is not enough. 

Even if you are not a fan of “Obamacare” (and I do not believe it is the perfect answer, but it is certainly a long-needed step in the right direction), think about those people the next time you are ready to criticize and ask yourself if you can honestly deny them care. Or expect a family to lose everything to keep a child alive. 

Next post – part 2 of Coping with Rare and Chronic Diseases.  Not Deanna’s this time – mine.

It’s been quite a while since I have posted here, and this post is NOT at all what I had planned for this weekend.  I have not posted anything since my daughter’s 21^st birthday in August, and now there will be a flurry of posts when I had only planned one this week.

But during the past week, there has been an adventure in my husband’s life and it is simply too good not to share.

My husband is easily one of the funniest men on the planet earth.  Along with his gift for hospitality, his sense of humor is definitely one of his top traits.  If I had a dime for every time he’s reduced me (and everyone else within earshot) to a pile of side-aching, tear-streaming fits of screaming laughter, I would have retired long ago.

This episode is definitely one of his best adventures and – lucky for me – he chronicled the climax in an email to his brother.

It all started last Sunday night, just after our son – who dropped in for a few games of pool with his dad – left for the evening.  My husband went outside to grill a salmon fillet.  When he opened the hood of the grill, he was greeted by a rodent.

I had no idea what was going on.  I was watching TV and checking one of my Twitter timelines.  I hear noises outside and next thing I know my husband has appeared beside me and taps me on the arm – and it was not a gentle tap.  He had a somewhat shocked look on his face.  I asked what was wrong and he told me.  He opened the grill and there was a rat staring back at him.

Since I was on Twitter, I couldn’t help but share this rather humorous event with a Twitter friend, MaryAnn.  With her permission, I’ve reproducing our exchange below.

Bonnie:  My husband just went outside to grill some salmon – lifted the lid and was greeted by……A RAT! George Foreman, here we come!!!!!

Mak:  EEeeeeeeee!

Bonnie:  That’s what my husband said as he ran back into the house.  That part was actually funny. Thank goodness he saw it before he lit the grill – just thinking of the smell is nauseating.

Mak:  Oh, my. Too bad you didn’t get video. He’d never live it down!

Bonnie:  No video, but I heard him shriek and could not imagine what was going on. Then I couldn’t stop laughing – still haven’t stopped!

Bonnie: His other comment was “It wasn’t as big as the rats in California.” I guess not everything is bigger in Texas-thank God!

Mak: No kidding! I’ve seen rats here and they are plenty big!

Bonnie:  Maybe this was a baby – or a Texas sized mouse! My husband’s in the kitchen muttering “f– – ing rats!”. LOL!

Mak: *rolling* Oh, stop, you’re killing me!

Bonnie: When I suggested it might have been a mouse, my husband said “no, I could tell by the finger he was giving me.”

Mak:  He sounds like a real card!

Bonnie (the next morning):  He came to bed muttering “I’m going to dream about “Ben”, I just know it.”

All was quiet this week on the rat front – until last night.  What follows is his own account of what occurred after I went to bed – this is from the email he sent to his brother which he titled “Ratso-Rizzo”.

Decided to take your advice and set Rat-Trap in barbecue at 5:00pm (still light out).

Since this would be Ratso’s “last meal” I gave him “Skippy” peanut butter.

Bonnie walked in at 5:10pm and I informed her of Rat Trap while also advising her that “execution” was scheduled for 8:00pm (since that’s how long I estimated it would take Ratso to find the stuff). I also told Bonnie to keep a sharp ear out for any barbecue noise at around that time. 

With the 5 Channel TV going we heard nothing by 8:00pm. I informed Bonnie that it’s possible the governor gave Ratso a stay of execution, hence no noise.

At 9:30pm Bonnie starts preparing for bed.  I went out to check the “execution chamber”. Upon opening the lid, there he is in the trap with his ass facing me, not moving.  I immediately closed the lid and figured I’d wait an hour before his funeral.

After about 15 minutes, I decided to check on the condemned.  Upon opening the barbecue lid again, here he is loose and dazed, but out of the trap. I immediately closed the lid again, ran into kitchen and grabbed Black Flag bug killer.

Upon returning to the barbecue, here’s his head at the opening.  He’s trying to get away. I sprayed Black Flag right in his face and he went back into the barbecue making a racket (really pissed him off).

I then ran upstairs to get my Pellet Rifle. Looking inside the chamber, it appeared to be loaded and ready for action.  I ran back downstairs out to the grill, pumped the rifle up 10 times for max power, opened the grill, aimed at dazed Ratso’s head – and pulled the trigger from 4 feet away.

Yep, nothing happens!!!

I checked the chamber again and the safety and all appeared okay.  Fired again, nothing!!!

Closed the grill, ran back upstairs, put a pellet in the rifle, pumped it up 10 times, and I could feel the pressure building, so now I figure “I’m finally in business”.   

Ran back downstairs, opened the grill, aimed, and immediately fired again.  

He bounced and landed in the corner of the grill not looking too well. On closer CSI examination with my flashlight, it appeared he took one through the neck and was bleeding (thank you soooo much, you piece of s – -t, bleeding all over my grill).   

Although I blessed him (of course) I will not start internment for a few hours, or tomorrow morning just to be on the safe side.

He was pretty big (size of baby rabbit).

I will probably reset trap in case there are more, since this hit came so fast.                        

For my part, I was already in bed when all this happened – didn’t hear a thing, including the patter of little feet running up and down stairs.  But was I ever surprised when, just as I was about to doze off, the lights came on in the bedroom and my husband walks in – carrying his pellet rifle!  I pulled the covers over my head and closed my eyes.

And today, while we were shopping for groceries, we also purchased – you guessed it – a George Foreman Grill!

This evening we plan to watch either “Ben” or one of my favorite episodes of Fawlty Towers – “Basil the Rat”.

Today is my daughter’s 21^st birthday.  She is not celebrating it the way we all would have liked.

It has been 3 months since I last wrote a blog post.  These months have not been uneventful.  My daughter’s journey has been down a road full of potholes and bumps.  She
continues to greet each twist and turn with good humor and good spirits.

She’s doing a whole lot better than I am.

Deanna was discharged from the hospital the day after my last blog post.  At that time, we were told it might take 6-8 weeks to get an appointment with a specialist.  We were looking for a medical professional specializing in movement disorders, a sub-specialty of neurology.

There are about 5 of these highly specialized doctors in the entire Dallas-Ft. Worth area.

While my daughter was still in the hospital, I started searching on the web for anything about this condition she is experiencing, known as Dystonia.  I found an entire organization dedicated to this “orphan disease” right here in Dallas.  It’s called “Beat Dystonia”.  Out of sheer desperation and an urgent need to speak to someone – anyone that has had or has this condition, I shot an email to the organization’s founder, Rogers Hartmann.

Her response was virtually immediate.  I was flooded with gratitude and relief.  A real, live individual who has Dystonia was communicating with me.  She was exceptionally generous in offering up help.  I asked her for the name of the best doctor in Dallas and she told me his name, and more.  I am eternally grateful to Rogers for her warmth, knowledge, persistently positive attitude, and willingness to extend herself to those suffering from this debilitating, and little-known condition.

Roger’s TED Talk is available on the web at http://www.tedxsmu.org/past-talks/rogers-hartmann-at-tedxsmu/  .  She was a guest on Oprah with Dr. Oz in March of 2009.  http://www.oprah.com/health/Dystonia-Dr-Oz-Explains-Causes-and-Symptoms.  The web site of her organization is http://www.lifewithdystonia.com/.

I am forever in her debt.  Hers was the first voice of hope I heard at the beginning of this
journey.

When I called the leading specialist to request an appointment, I was told I could have a spot on October 25.

October 25^th?  5 months away?

And I thought 6-8 weeks was bad.

As I booked the appointment, the doctor’s scheduling coordinator was kind enough to give me the names of several other doctors.  As it turned out, the neurologist at the hospital my daughter had been in was able to get one of these very doctors on the phone.   They spent time reviewing the case at length.  The specialist agreed to take the case because of my daughter’s complicated medical history and her age.  She cleared a space on her schedule at her Ft. Worth office.  It was a mere two weeks after Deanna’s discharge from the hospital.

I was feeling better, if somewhat intimidated.  I’ve lived in Dallas for 9 years and I’d
never been to Forth Worth.

OK – I know this is rather pathetic, but it is true.

Now I had to take a trip to Ft. Worth in rush hour traffic (the appointment was at 8 AM) with my sick child in the car.

It was the most stressful drive I’ve made in recent memory, but we arrived on time and I didn’t get lost.

No I don’t have GPS – 9 years in Dallas and never been to Ft. Worth – does it sound like I need GPS?

I wish we’d  had had more time to spend in this interesting city but we had to get in and out and Deanna was not really up to sight-seeing.  We got a definitive diagnosis and a referral to another specialist.  We were able to get an appointment with him within the week.

Another miracle.  Few medical professionals have experience with Deanna’s particular form of Dystonia.  One of them is in Dallas.  Luck was on our side again.

The new specialist strongly suspected a sleep disorder.  This made a lot of sense to me.  Deanna has long had difficulty sleeping, and the Dystonia presented itself within weeks of her returning to work full-time after being out for several months.  The new schedule forced her to rise and shine for work each day whether she’d slept well – or at all – or not.

It all caught up with her within just three weeks.

So off we went for a sleep study.  This was at the end of June.

Then began the waiting game.  We did not hear from the doctor who ordered the sleep study for weeks.

However, Deanna’s condition appeared to stabilize, and her employer called and asked if she could come in on a part-time basis.  She got medical clearance for that and started working part-time again in July.  It wasn’t long before her employer wanted her back full-time, and since the episodes of Dystonia appeared to be under control, she was given clearance to go back to work for 8 hours.

I had my doubts.  I just didn’t think this was going to work.

It took less than two weeks for her to relapse.  In that time, I was finally able to get in touch with the specialist who’d ordered the sleep study and we went to see him.

He diagnosed her with a sleeping disorder that exists on the narcolepsy continuum, and set out new instructions and all new medications.

I was terrified.

All new medications, many of them, and the ever-present worry of how any of them might react with the medications for her chronic hypertension – would there be side-effects and how bad would they be?  But I filled the prescriptions, took her to her nephrologist for a follow-up, and updated her neurologist with the latest information.

During all this, we celebrated our daughter’s 21^st birthday early, while she was staying with us for her scheduled doctor visits.

I asked her what kind of meal she wanted and what kind of cake.  She’s always loved Italian food and she was quick to ask for ravioli. She then gave me specifications for her birthday cake – vanilla cake, vanilla whipped frosting, and pink flowers. A small cake, because she and her boyfriend have a small refrigerator and don’t have room for a lot of leftovers, especially frivolous things like cake.

Again, my darling daughter amazed me with her unselfish nature.  Her preferred cake is chocolate, with chocolate frosting.  We both love that.  But because she knows that her Dad
and brother don’t care for that, and because she didn’t know if her brother’s girlfriend liked chocolate or vanilla, she chose to go with something that everyone would enjoy, even if it wasn’t her favorite.

I got a cake adorned with flowers and ribbons in multiple shades of pink – her favorite color.  It was absolutely beautiful when I went to pick it up – fitting for a special
birthday for a special girl.

Another miracle – when I went through the checkout line, I swiped my “rewards” card and the cake was free!

When things go wrong, they go wrong, but sometimes they go right just when you need it.

We celebrated her birthday, she loved her gifts (a camera for an upcoming trip – assuming she is well enough to make it  – with extra storage so she can take lots and lots of pictures) and we enjoyed some lovely family time.  We were joined by our son and his girlfriend, who were meeting Deanna’s boyfriend for the first time.  I am nominating him for sainthood.  He has been a rock through Deanna’s illness.  I attribute much of Deanna’s ability to weather all this calmly and cheerfully to the support she gets from this
wonderful young man.  His strength and tenderness are evident when they are together.

Two days later, she started her new medication routine.  I slept an hour the night before.  We started with the evening meds.  When she woke up the next day after a wonderful sleep (the good news), she had a splitting headache (the bad news) – a side effect of two of the new medications. She pressed on with the new daytime medication.

As I had feared, she could not tolerate it.  Her blood pressure quickly elevated, but so did her pulse.  I called the nephrologist, who told me I’d better call the 2^nd specialist and
tell him she can’t tolerate this medication.

When I spoke to him and told him what had happened, he agreed and told her to stop taking it. When I told him about the headache, which persisted into day two, he told me to back off the night-time meds as well.

So she went back to her original Parkinsonian medication.  I was hoping that within a
few days, her relapse would be under control and the episodes would be few and minor.  This appears to be the case – except she has had a headache for 3 days.

And she has lost her job.

She can’t sustain full-time employment and the school where she was working doesn’t have anything for her on a part-time basis at this point in time.

This is probably an odd sort of blessing.  Clearly, resolving the sleep disorder, which will ultimately resolve the Dystonia, is going to be a process.  It will be complicated by her existing chronic hypertension.  This is not a great time to try to work – especially as a teacher in a pre-school.  As much as she loves it, this is a job that requires a great deal of energy from my daughter.  She just doesn’t have it at the present time.

So, in addition to waiting for the next new medication and follow-up visits with all her doctors, we are about to experience the process of applying for some kind of disability benefits, because her savings have run out.

Being the mother of a sick child involves a certain amount of stress.  I am prepared to deal with that.

What I was not prepared for was an illness of my own.

When Deanna was released from the hospital in May and we’d seen her specialists and had a game plan, I suddenly had time to notice a pain in my left hand.  Upon closer examination, I found it was localized to my index finger.  I went to see my own doctor.  She did some blood tests and an x-ray and gave me some meds for arthritis.  When the medications proved ineffective (and came with some terrible side-effects) she referred me to a Rheumatologist.

The first available appointment was two months away.  Sooner if there was a cancellation.

Suddenly, all the medical professionals I needed to communicate with in my life were specialists in such lofty fields that getting in (as a new patient) to see them is an exercise in patience.

Patience is not my strong suit.  I got “F” in patience.  At this point, there is no choice, so I am learning to be patient.

I do not like it one bit.

As I waited for an appointment with the Rheumatologist, the swelling and pain spread to my right shoulder, right pinkie knuckle and right foot.  When I did have my initial doctor visit, I got more blood tests, more x-rays and a steroid shot, which helped everything
except my finger.

On my follow-up (this week), I got the official diagnosis.  Rheumatoid arthritis.   RA is an auto-immune disorder and can have the effect of sucking out all your energy and leaving you with virtually no appetite.  That is what it has been doing to me, just when I need my energy the most.

Energy is something I’ve always had plenty of.  It is the height of irony that just when I
really need it, it evades me.

More lessons in patience.

Trying to be an effective mother to my ill child – who no longer lives at home and does not drive – is now made more complicated by my own infirmities.  Hopefully, when I begin
my medication, I won’t have any of the side-effects and will feel better soon.

As I said, Deanna is doing better than I am.  Although she sounds tired, she is her usual sweet, cheerful self.

She was born a happy baby, and she continues to be a happy young woman, despite all her challenges.

Today is Deanna’s 21^st birthday, but 21 years ago, I got the gift.  Deanna is the gift that keeps on giving.

Happy Birthday Deanna.  I love you and I am so proud of you.

Last week’s post was a tribute to the wonderful woman who was my Mother.  This week, I am writing about my own experience as a mother to the wonderful woman who is my daughter.  This is a long post so I hope you will indulge me.

I am writing this in a hospital room.  Deanna has been here for two days.  She’s had an MRI and an EEG and they’ve taken multiple vials of blood.  After all this, they are still not sure what is wrong.

Her symptoms point to a condition in its own right – Dystonia – but this can also be a symptom of other conditions, notably Parkinson’s.  So far, the Parkinson medication is not working, but these things take time.

An effective treatment can’t get here soon enough for me.  There is nothing worse than watching your child suffer.  I have had to watch her suffer far too much in her nearly 21 years.

A week ago this past Wednesday, Deanna was in the ER because she was experiencing what looked like a seizure.  This led me to take the next day off in order to take her to a see several physicians.

The first one was a neurologist, a new specialty to add to her entourage.  The neurologist was stumped and proceeded to order up some tests in order to determine a diagnosis.  After enduring the glacially slow authorization from the insurance company, she wasn’t able to have the MRI because she had an episode during the intake process and could not hold still.  Thus, the hospital.

The second doctor is one with which we are very familiar – Deanna’s nephrologist (kidney specialist).  My daughter was born with a single kidney.  She has chronic hypertension, for which she takes medication in order to keep it under control.  The problem she is currently experiencing is raising her blood pressure, so we wanted to make sure it wasn’t something to be concerned with.  In this case, it was a fairly routine visit.

Appointment concluded, we dropped in on my son, who works just down the street from the doctor’s office.  While visiting with him, his little sister had her worst episode up to that point – right leg shaking violently and her foot banging on the floor while her arms hinged shut and her fingers and neck contorted.  It was not easy to watch, but that was all we could do. It lasted about a minute – maybe a minute and a half.  Felt like forever.

As I drove back home, I said to her “Well, the good news is that this is not life-threatening.  If you were in danger, they would have put you in the hospital.  But I know it hurts and it is frustrating and scary not having control of your body.”

And my daughter, in her halting speech (also affected by whatever this is that she is suffering from) said to me “I am not afraid”.

My daughter has an uncommonly strong spirit, one I have always guarded.   If what I saw happening to her were happening to me, I’d be plenty scared myself.

Deanna -confronted with medical mysteries and challenges all her life – has always faced them with strength, determination, and even a sense of humor.  And a presence of mind that is often startling.

Earlier in the day, at the neurologist’s office, she had to use the bathroom.  She was having difficulty getting the words out – even though in her mind, she could “hear” herself speaking just fine.  When the words couldn’t come, she called on a skill she learned in high school – American Sign Language.  As soon as she held up her left hand and I saw her sign the letter “t”, I knew she needed something.  She later explained that in addition to being a “t” it’s also the sign for “toilet” – live and learn.

I accompanied her to the bathroom, thinking she’d need help getting her jeans – belted across hips – off and back on.  Silly me – despite her contorted fingers, she unbuckled her belt, unbuttoned her button and unzipped her zipper without any help from me.  When she was done, she put herself back together again unaided.  I was feeling rather useless.

I don’t know why.  It’s happened before.

She was 5 years old when we discovered she had a single kidney.  When she went to the pediatrician for her check-up and vaccinations for Kindergarten, a urinalysis revealed a UTI (urinary tract infection).  After a week of antibiotics, the infection persisted – so off to the hospital for tests.

About a week later, my husband called me at work and left a Voice Mail.  He’d gotten the test results.

I love my husband, but he is deliberate, methodical and detail-oriented where I am direct, blunt and concise.  I prefer the Reader’s Digest version – he always gives me “War and Peace.”  After listening to him describe, in excruciating detail, Deanna’s condition – kidney valve reflux – his final sentence shocked me to the core.

“And by the way, she’s only got one kidney.  Guess you’ll be calling me back!”

Our daughter had surgery a few months later to move the tube that transports urine from the kidney to her bladder.  Reflux is when the valve is not working correctly, allowing urine to splash back up into the kidney from the bladder.

Where most people have two kidneys, our daughter had just one, and it had been working overtime for 5 years trying to keep her system clean.   With this surgery, we thought everything was fine.  Deanna repeated Kindergarten because of developmental delays (which we attributed to her physical issues) and went on to first grade.

Then she began experiencing what sounded like migraine headaches.  So we chased migraines.  For the next four years!  Deanna began to miss school, and she although her appetite was not affected, she became clinically anorexic because often, she could not keep her food down.

But she never stopped making the attempt to attend school, and she never let her headaches prevent her from playing with her friends or doing anything a kid her age would normally do.  Even when she got Bell’s palsy in May of 2001, which paralyzed the left side of her face for three months, she continued to live the life of an average 11-year-old girl.

When she entered 5^th grade in the fall of 2001, we had concerns that she was falling behind.  In order to get her Special Ed services, she needed an evaluation.  Part of that consisted of physical tests (hearing, eyes, etc).  I had noticed over the summer that she was holding her books very close to her eyes, so I’d already made an appointment with the eye doctor.

At that appointment, the eye doctor could not get a reading and asked that we come back so he could dilate her pupils and take a closer look.  In the meantime, the school nurse called and we had an extensive conversation about Deanna’s medical history.

Two days later, I got a call from the school nurse.  Deanna’s blood pressure was 250 over 180 and she needed to be in the ER immediately.  This woman, the nurse at my daughter’s elementary school, was the first medical professional that looked at Deanna as a whole person.  She was suspicious and acted on her hunch – and thank God, because Deanna was close to a stroke or heart attack.

After getting past the triage nurse – who insisted on talking to “the patient” and then sent us to the waiting room where we sat for over an hour – we spent all afternoon in our local hospital ER.  When their efforts to lower her pressure went nowhere, we were referred to Children’s Hospital LA, where – on the morning after she was admitted – the chief nephrologist told me that Bell’s palsy was a primary indicator of malignant hypertension.

I wanted to kill someone.

Instead, I observed the other patients and found gratitude.  Deanna’s first roommate was an infant whose life was already over.  Born with complications, the inserting of a shunt had caused extreme brain damage.  This baby, 6 months old, would be on dialysis for the rest of his life.  His parent’s lives consisted of working in shifts so that he was never alone in the hospital.

Deanna spent 4 days in the hospital.  It took 2 days just to get her blood pressure down to normal.  Her second roommate was a 16-year-old who had been rushed to the hospital because a donor kidney for a transplant had become available.  This young girl had been there before – the whole staff knew her.  She’d been celebrating her 16^th birthday when she got the news.

Then her father, and a priest, arrived.  There was joy and sorrow.   The joy was getting a kidney.  The sorrow? The donor was her mother – who had just been killed in a car accident.  I could not begin to imagine the emotional state of her father – a man who was going to see his child have possibly life-threatening, yet life-saving surgery – and discussing a funeral with his priest.

I thanked God many times during those 4 days – and many times since – that Deanna didn’t have anything more horrible than high blood pressure, controllable with medication.  She had some heart damage and hypertensive retinopathy due to the length of time her condition went undiagnosed, but all that healed within a year of getting her blood pressure under control.

Last week, when I returned home from a day of visiting doctors with yet another mystery illness, I got there in time to tune into my favorite television show, “The Vampire Diaries” and during the episode, the following line was spoken:

“It’s no easy task being an ordinary parent to an extraordinary child.”

I cried.  I’d spent the day with a daughter who showed extreme grace under pressure, and I felt so inadequate.  I was doing everything I knew how to do and nothing made a bit of difference.  My child was still suffering, but looking at her most of the time, it would be hard to tell.

So I’m writing this from yet another hospital room.  Deanna is so familiar with these places and routines, no one needs to tell her how to operate the bed, and she doesn’t mind when people come in at all hours of the day and night to check her vital signs.  She is gracious and in great spirits.  She’s bonded with a wonderful nurse here and after the last episode, gave her an enormous hug.  The nurse – Amy – beamed.  It is hard to resist my daughter’s prodigious charm.

Last night, she had two episodes, one lasting 6 minutes, the other 8.  The muscles in her legs, arms, hands, neck, head, torso, and tongue contract and cause her to move in odd ways that look like a seizure.   Her limbs flailing wildly, Deanna is completely bound by what her body is doing and unable to control it – but conscious through it all.  When it is over, it’s as if she’s run 5 miles at top speed.  I write this as she is sleeping – the one time I can be sure – so far – that no episodes will disturb her.

I do not know why my precious child has had so much suffering in her life.  I do know that her joyful spirit makes my job as her mother much easier.  I have always said that if you must have a child with chronic or serious illnesses, Deanna is the child you would want.

So now, we do what we’ve done so often in the past.  We wait.  For the right connection to the right medical specialist who can give an exact diagnosis and offer up some treatment that will provide our girl with relief.

I am not great at waiting.  Patience is not my strong suit.  I believe Deanna is my gift from God – a living lesson in the art of patience – and grace.

This year, I celebrate my 24^th Mother’s Day without my Mom.  She passed away in January of 1987, and I miss her.  I miss her most on occasions like this, when I celebrate her for what she did best, and never expected to do at all.  She openly doubted whether she served me well, and I emphatically told her I was the luckiest person on earth to have her as a mother.  Without her, I have no idea what my life would have been like, or who I would be today.

You see, I was adopted.  As the story goes, my birth father was killed in the Korean War before I was born, and my birth mother did not get adequate pre-natal care.  I was born by c-section and there were complications resulting in a serious infection.  As she was dying, my birth mother contacted the woman who would become my Mom.  They knew each other.  She told her she could not die in peace unless she knew that my Mom would agree to raise me.

My Mom had some reservations about this.  She was 47 years old, and had only been married to my Dad for 2 years, but already she could see he had a drinking problem.  She did not have any children and at this point in her life, she’d thought she never would.  She talked it over with my Dad, and an attorney, and my birth mother signed the papers before she died.

As a result of my parents’ age, and my Dad’s alcoholism, I grew up an only child.  Although I missed having siblings, I had a wonderful life – despite my Dad’s drinking.  The reason I had such a wonderful life was because I had an extraordinary mother.

Mom was Canadian of British and Prussian extraction – and she carried her “stiff upper lip” everywhere.  She did not tolerate fools, hysteria, or laziness.  When I fell down and scraped my knees and cried, I was told “Now Bonnie, pull yourself together.”  When I didn’t pick up after myself, I was told “Laziness will get you nowhere – discipline yourself.”  When I wasted my time on nonsense or struggled with studies, I was told “There are 3 kinds of people in this world – the ones who talk about things, the ones who talk about people, and the ones who discuss ideas – be an idea person.”

This may sound harsh, but it served me well as an adult, particularly when I had children of my own – more on that below!  And there were very warm moments I remember well.

When I contracted croup, my Mom was the one was sat under a sheet with me getting steam from a humidifier, letting her new perm turn into a ball of frizz.  She fought with our pediatrician until he hospitalized me because she knew I needed to have my tonsils out – and she was right!  I had a series of nasty staph infections and she treated them with home remedies that were more effective than drugs.

No one read stories better than my Mom.  She loved books and taught me to read at age 3.  She read to me and she read with voices, in character.  It was magical.  She taught me life lessons through parables and I remember most of them to this day, in her voice.  Her greatest gift to me has been my love of books and reading.

She was a working mother in an age when that was highly unusual.  She had a man’s job – production manager in a medical advertising agency.  Being one of the Mom’s who car-pooled me and my friends to Brownies or dance lessons or athletic events was just not something she could manage most of the time – but it was a treat when she could.

My Mom also had a powerful sense of right and wrong, and she was a great example of living a righteous life.  She quietly helped people in need – whether she knew them or not –  never drawing attention to her actions.  Every year at tax time, she had a long list of charitable organizations whose missions she believed in and to whom she contributed money.  She would not tolerate unkindness – when I once made fun of a friend because of the way she was holding her knife, my mother kindly showed her the correct way – and later gave me quite a dressing down for my behavior.  To hear “Bonnie, I was very disappointed in you” was so painful to hear I would rather have been spanked!

She was also an activist when something called for action.  One year, our neighborhood had an infestation of caterpillars.  They were killing all the trees.  The only way to save the trees was for every tree to be sprayed.  My mother went door to door (and our neighborhood had 200 homes if it had 10) and got a commitment from every single homeowner that they would contribute to paying a tree surgeon to come in and spray all the trees.  And they did!

My parents commuted to New York City from our home in Westchester County 5 days a week.  The area they lived in was growing and many more people were commuting.  The train station parking lot overflowed into the street.  My parents came home every day to a parking ticket on their windshield.  A lot of other people had them too.  My mother started a petition and got all those drivers being ticketed to sign it, took it to the appropriate people, and got a brand new parking lot built at that train station.  Today, I lovingly refer to it as the Jean Preston Memorial Parking Lot.

When my Dad’s drinking became too much to handle, my parents separated and my mother became a single Mom.  I was only 11, but I was mature and willing to take on added responsibility and we managed quite well.  My Dad was not great at visitation, and I balked several times at spending time with him.  When I expressed a desire not to visit with Dad, she told me “He is your Father, and he is entitled to time with you, and you will spend time with him.”  Despite everything he’d done, mostly to her, her sense of justice would not allow her to curtail his right to spend time with his child.  I disagreed, but I did what she said because I respected her moral authority.

My Mom’s father was a dental surgeon, and she had trained to be a nurse.   I had many illnesses as a child, and my Mom’s knowledge and wisdom was indispensible.  She taught me how to recognize a good doctor, and that came in very handy later when I became a mother myself.

As I became a young adult, I gave my Mom some challenging times.  But regardless of what I did, or didn’t do, my mother was there for me in good times and bad.  We were as close as any mother and daughter.  I knew I was special to her because she never expected to have the experience of motherhood.

But I also knew because of something I overheard one Thanksgiving.

I had an “aunt” – a distant cousin of my Mom’s, but to me she was always Aunt Blanche.  Aunt Blanche was vivacious, glamorous (not beautiful but always made up and always wearing interesting jewelry) and full of life.  She was as gregarious as her husband, my Uncle Gil, was introverted.  They had no children and traveled the world together.  They were a love match and I loved to visit them at their home in Pennsylvania.  But I also loved it when they visited us, because they always had a slide show of their latest trip.  My Aunt Blanche narrated those shows with such detail and enthusiasm; she was like an animated “National Geographic” magazine.

One Thanksgiving, I overheard my Aunt Blanche talking to my Mom.  She said “You know, Jean, if you had never adopted Bonnie, you would be travelling the world with Gil and me.”

I’ve never forgotten my Mother’s response.

“Blanche, Bonnie has taken me places that you will never see.”

I am crying as I write this.  Not just because I know how much my Mother loved me, but because as a Mother myself, I now recognize the truth of this on a whole other level.  For some things, “you’ve just got to be there.”  Motherhood is something that gives you experiences you can’t have any other way – and it doesn’t matter if your child came from your womb or not.

My Mom had a stroke in 2002.  She remained aphasic for the rest of her life, an experience that frustrated her constantly.  We were so close, and I knew her so well, I was often the only person who could understand what she was trying to say.  But her life was never the same after the stroke.

Shortly before her stroke, in a quiet moment, she asked me – in all seriousness – if she had done a good job as a mother.  I was shocked.  But I told her “I have always felt like the luckiest woman on earth because I have the best Mom ever.  I could not have had a better mother.”  She cried.  I could not believe she had such doubts – but it showed me there were cracks in her armor after all.

My first child, my son, was born 7 months before my Mom died.  She was never able to do with him the things I know she looked forward to – especially reading him stories.

But I will never forget her face the first time she saw him.  Her face was beatific as she took him from my arms and walked away with him, just to sit and look at him.  I knew she was seeing me because my son has many of my features.  My Mom was still bossy at age 80, even with impaired speech – admonishing me for using commercial infant formulas (“I made yours from scratch!”) and disposable diapers.  I just smiled at her and let her enjoy herself.

Five months later, cancer -which had visited her once before and cost her a breast -made another appearance and quickly took over inside her body.  At Thanksgiving, I knew something was wrong, but by Christmas, I knew it was serious.  The woman sitting silently in a chair, wrapped in a blanket, was not my Mom – not the Mom who complained all her life about the heat in my Aunt’s house – my Mom was NEVER cold, even at age 80.

Just a month before her 81^st birthday, in January of 2007, my Mom passed away.  I saw her 2 hours before she died.  I brought my son so she could see him.  I told her I was fine, all’s well.  I wanted her not to worry about me so she could rest in peace.

She never got to meet her granddaughter.  She never got to see her grandchildren grow up, achieve milestones.  And with each significant step in their lives, I have missed her.  I have missed her wise counsel, her humor (a wicked, British sense of humor) and her incredible strength.  But I am SO lucky that she was able to pass so much of who she was on to me.  It has served me well in my role as a mother.

God knew what he was doing when he arranged things so that Jean Preston would be my Mom.  My daughter was born with a single kidney.  We did not know this until she needed valve reimplantation surgery at age 5.  We thought our troubles were over then.

But we chased migraine headaches for another 6 years before getting a diagnosis of malignant hypertension – something I know would never have happened if my mother had been alive.  She would have called someone in her army of medical professionals and solved the riddle in much less time.

My daughter will take medication for the rest of her life to control chronic hypertension.  There have been many trips to the ER since her initial diagnosis at age 11 – she will turn 21 this year.  Lately she has developed an issue with seizures, and we are in the process of getting tests done for diagnostic purposes.  It’s at times like these when I miss my Mom’s presence the most.  But I am able to navigate these challenges because of the knowledge and resolve she passed on to me.

I regret that my mother did not live long enough for my children to know her.  She would have adored them in the way that only a grandmother can – and they would have learned so much from her.  I have tried to make their lives rich in the way I believe my mother would have done, but honestly, I know I have come up short.

I miss my Mom every day, but I feel her spirit in my moments of joy and sorrow.  And I still feel like the luckiest woman on earth because I had the best mother in the world!

Happy Mother’s Day Mom!  I Love You!

Just a short note to let my blog readers know that I still have a blog and intend to post regularly.  This past month, I have been exceptionally busy, personally and professionally.  But I see daylight and have found the time to make an important change. 

I now have a new Twitter account and it is associated with this blog.  I will publicize posts to Antipandemonium there and the content will be associated with people and issues I blog about here.  The new Twitter is @Antipandemonium.

For those who enjoy my tweet and posts about “The Vampire Diaries” at BiteOnThis.net, you can continue to follow me on Twitter using @bonniejpreston. 

Thanks for your patience and your continued support.

 “We never know the worth of water till the well is dry.”  ~Thomas Fuller, Gnomologia, 1732

Did you know that Tuesday, March 22 is World Water Day?  Were you aware that there is a World Water Day?  Are you curious about why there is a World Water Day?

Our diminishing supply of water is a growing problem world-wide.  Over a billion people lack safe drinking water.

It should come as no surprise that water is a precious commodity in the middle-east, much of which is desert.  But there is clear evidence that the area is running out of water.  And that will lead to a cascade of other problems, not the least of which is civil unrest. 

But if you think this problem is confined to the middle-east, or Africa, or third world countries alone, think again.

We are facing a water shortage of our own right here in the United States, particularly in the American southwest. 

Lake Mead, the largest reservoir in the lower 48, is currently only 40% full.  The water supplies of Colorado, Wyoming, Utah, New Mexico, Nevada, Arizona and California are threatened as a result. 

In addition to facing a shortage of water due primarily to climate change, we are engaged in activities that are polluting our existing water supplies in the name of “natural gas production”.

The wisdom of this is highly questionable, given the research, which shows the following:

• Hydraulic fracturing (“hydrofracking”) – one of the methods used in natural gas production – produces waste that contains radioactivity which is hauled to sewage plants not equipped to hand it.
• The waste winds up in rivers that feed our drinking water supplies.  The waste contains things like corrosive salts, benzene (a known carcinogen) and radium (a radioactive element). 

The New York Times published a great article on this issue in February.  It bears a full reading.  http://www.nytimes.com/2011/02/27/us/27gas.html?_r=2&hp

One of the experts quoted in this article says “We are burning the furniture to heat the house”. 

That is an appropriate description.  Our behavior with respect to our environment has become irrational.

We don’t have to look any further than Japan to see where our arrogance has gotten us.  Rather than taking a long view and developing alternative renewable energy programs, we have witnessed the results of a decision to place a nuclear facility in an earthquake zone subject to tsunamis. 

As I recently stated on Twitter, if you build a nuclear plant to withstand an earthquake magnitude 10, Mother Nature will send you an 11.  If you make it safe from tsunami waves of 20 feet, Mother Nature will be sure you get 30. 

Mother Nature always bats last!  When are we going to take this truth seriously?

The January 2011 Issue of National Geographic highlighted “Population 7 Billion” as its cover story, because this year, the population of this big blue marble that we all live on is going to hit that number.

Even if you have not read this story, it is hard to ignore the effect mankind is having on the environment.  We have been living as if there is no end to finite resources, and no consequences to using them up.  

A figure of 7 billion souls brings with it an increased sense of urgency for solutions to some of our major environmental problems – air and water being just two.  

There are others, but as I indicated in a prior post, air and water fall neatly on the base of “Maslow’s Hierarchy of Needs” along with food.  They are basic.  Without air, water and food, mankind no longer exists.

Dr. Charles David Keeling was the first person in the world to develop an accurate technique for measuring carbon dioxide in the air.  A machine to capture these measurements was installed on Mauna Loa in the 1950’s.  At that time, his measurement was 310 parts per million – meaning that every million pints of air contained 310 pints of carbon dioxide.

In 2005, when Dr. Keeling died, that number was 380 parts per million. 

It is expected to pass 400 within 5 years.  Current projections put the number at 560 before the end of the 21^st century.  This is double what it was before the Industrial Revolution.

Let me summarize:

• 1950    310 parts per million
• 2005   380 parts per million
• 2100   400 parts per million

We don’t really know exactly what levels like this will do to the earth, but it seems clear that the increased levels have adversely affected our climate.   And this is a threat to human welfare and survival.

What we are risking are melting ice sheets, a rise in sea levels globally, increased droughts, heat waves, flood, storms, depletion of sea life, and extinction of plants and animals.

These things are already occurring but these activities can only intensify if we don’t do something. 

And what is the present U.S. House of Representatives – recently infused with an influx of new blood from the Republican Party – doing in the face of this overwhelming evidence that we are destroying the very environment that has sustained life (all forms of life) on this planet for millennia? 

Gutting the budget and slashing anything that protects the public’s air, water, and food, or supports the efforts of scientists engaged in the study of effects of climate change!

Why? Because we have a “budget crisis”. 

Wake up people!  We have an environmental crisis.  And if we don’t tighten out belts and deal with that problem – right now – we won’t have to worry about a financial crisis. 

Because we won’t be here.

According to the 2009 Pew survey, 35 percent of Republicans say there is no solid evidence of global warming.  And they are engaged in a disinformation campaign to influence the public – a campaign that says environmental scientists are all crackpots!

It appears to be working.  Between 2007 and 2009, the number of Americans who believe in climate change dropped 20%, from 77% to 57%.

Who are you going to believe – a member of Congress, or Dr. Charles David Keeling, a man who spent his entire life studying climate – a man with a professional reputation for meticulous research and documentation?

Many of the politicians in Washington D.C. appear to be behaving as if there are no environmental problems.  Some of them are outright “deniers”. 

But who is going to pay the price for their denial?

The lack of quality in our air is already causing major health problems – anyone with allergies, asthma, COPD or any other respiratory condition is already suffering.  That means more visits to the doctor or the hospital – if you can afford it.

But what about all the people in the United States who are suffering and can’t afford medication?  What is their suffering costing us in terms of productivity?  What is it costing them emotionally and physically?

More importantly – how can a child who is suffering from allergies or asthma be fully present in school every day? 

The evidence that we are killing our planet is striking.  And if we kill our planet, where are we going to live? What will become of our children?  What kind of world will they inherit?

Despite all this bad news, I am hopeful that the climate crisis is the one that will ultimately bring all the people of the earth together with a set of common goals – to create sensible programs that sustain the resources of the planet and promote health and well-being for all its creatures, everywhere. 

I honestly believe we have no other choice.  If we don’t, we won’t be here much longer.

And ultimately, I believe we love our children too much to let that happen. 

“We do not inherit the earth from our ancestors; we borrow it from our children”.  ~Native American Proverb

For more information about the impact of our dwindling water supplies and other environmental issues, please visit the links I have posted at http://www.bonniejpreston.com/environment .

“There can be no keener revelation of a society’s soul than the way in which it treats its children.”  Nelson Mandela, former president of South Africa

When I read the quotation above, I think perhaps we no longer value our children in the United States.

If you think that is a radical statement, consider the following:

• Child Poverty – 25% of children in the US are living in poverty

On 3/6/2011, CBS’ 60 Minutes aired a story about homeless children in Florida.  In that show, they reported that poverty among children is expected to reach 25% this year.

Let me say that again.  In this country, 25% of our children will soon be living in poverty.

1 in every 4 children.

That is, by the way, the national average. In some states, it’s already far greater.   Here’s a link – look for yourself.   http://www.eddataexpress.ed.gov/

If you don’t watch 60 Minutes, you may not have heard this.

Why isn’t this NEWS?  Every night? Why are the major networks interviewing the likes of Charlie Sheen when 1 in 4 children in this country is living in poverty?

Why?  Because Charlie Sheen interviews draw a larger audience – and that makes money for the corporations that own our mass media.

Poverty is depressing – and apparently it isn’t compelling enough to capture sufficient viewership to make airing stories about it profitable to network or cable news divisions.

You don’t SUDDENLY have 25% of the population of children enter poverty.  The fact that this is being ignored by the fourth estate makes a statement.

Here’s another indicator that our values are questionable:

• Health Care – Pediatricians among the 5 lowest paid physicians by specialty

About two years ago, my son was about to graduate from college and he expressed an interest in becoming a physician’s assistant.  I decided to do some research for him and I discovered that among all medical specialties, pediatrics pays among the least.

https://www.aamc.org/students/medstudents/cim/

What pays the most?  PLASTIC SURGERY!

Apparently, we care more about how we look than the health our children.

I am not quite sure why I am surprised by this.  After all, we live in a country, where we have elevated such banalities as a cup of coffee and a bottle of water to the level of status symbols!

So it stands to reason that with each passing year, medical school students seem less interested in specializing in pediatrics.  It won’t pay them enough to pay back the cost of all their student loans.

But it is not just the field of medicine that reflects the low regard in which we hold our children – the future leaders of this country.

• Education – The Assault on Public School Teachers

There is an assault on public education in this country, and it is aimed at public school teachers.  The purveyors of the latest “magic bullet” to fix the current state of public education are demonizing teachers, measuring them according to the results of incessant, meaningless student tests, and threatening to keep only the teachers who “measure up”.

I don’t believe we have ever treated teachers in this country with the respect that they deserve.  Teachers have the second most challenging job in the world, after parents.  I am 58 years old and I cannot recall a time in my life when the teaching profession was respected as highly as doctor, lawyer, engineer or architect.

We certainly don’t treat them with the esteem they are getting in Finland! http://hechingerreport.org/content/an-interview-with-henna-virkkunen-finlands-minister-of-education_5458/

Teachers are influential and can be inspirational.  The fact that they are currently being vilified should be a wake up call to every citizen in this country who sends their children to public school and every young person who aspires to teach.

And while teachers are under attack in public schools, so are our kids:

• Marketing and Advertising – Turning Our Children Into Consumers

Our children begin to be trained to be consumers almost from the time they are born.  And while television used to be the source of commercialism most parents were concerned with, kids are now targeted through multiple channels: television, internet, movies, toys, and even in our schools:

Consider the following:

• A full week of teaching time is lost to Channel One every year; one day per year is lost just to the ads.
• Companies spend about $17 billion annually marketing to children, up from the $100 million spent in 1983.
• Until the age of about 8, children do not understand advertising’s persuasive intent and very young children can’t distinguish between commercials and program content.
• Children ages 2-11 see more than 25,000 advertisements a year on TV alone.

These examples came from Campaign for a Commercial Free Childhood’s web site.  Please visit and learn more.  (http://www.commercialfreechildhood.org/index.html)

If none of this is sufficient for you begin to question whether or not we value our children as much as we believe, perhaps this will convince you:

• The Environment – House Passes HR#1 – Cuts Half Percent from Budget, Undoes all Environmental Progress Made in the Past 30 Years

In February, the House passed HR#1 – Full-Year Continuing Appropriations Act, 2011.

This bill proposed cuts deep into Head Start, WIC and programs for Community Health Centers and public housing.  As many as 5 million children would be affected by these cuts alone.  That will surely contribute to more children sliding into poverty nationally.

Additional cuts would make it nearly impossible for the EPA to function and would  dismantle the Clean Air Act.  It takes aim at other agencies responsible for environmental and food safety

According to the NRDC, the Clean Air Act has yielded $30 in health benefits for every $1 in expenses.  Seems like a good return to me.  But the people paying the $1 apparently don’t see it that way.  Hopefully, none of their children have asthma, or have ever spent time in a hospital because of e coli or salmonella.

So, back to the question of whether or not we value our children:

• Child Poverty – 1 in 4 children living in poverty, cuts in vital social programs
• Health Care – Pediatricians among the 5 lowest paid medical specialties
• Education – Public schools and teachers under attack across the country
• Marketing and Advertising – The Commercialization of Childhood
• The Environment – Environmental Safety Regulations and Agencies under attack

Most of these issues have become political – and as such, ideologues on both sides spend too much time fighting and not enough doing the right thing.  Where our children are concerned, we need to get the politics out and take action in the best interest of our kids.

If you don’t like what is happening to the world you live in – the one your children and grandchildren will inherit – then it is time for you to do something about it.  It is time to show our children that we really do value them.

Don’t believe those who say there is nothing you can do.  They are wrong.  You have a voice – start using it.  Here’s how:

Stop supporting low standards in popular culture.  Don’t buy or read People Magazine or any of those other gossip rags.   Don’t watch Charlie Sheen on television or follow him on Twitter!  Do not waste another one of your brain cells on the stupid gossip that is passed off as “entertainment” by the mass media.  They are only selling it because you’re buying it – raise your standards!  Be a better example to your kids!

Visit a neo-natal intensive care unit in a local hospital.  Count your blessings. Then, the next time you take your child to the pediatrician, thank your doctor for helping to keep your child healthy.  I know you appreciate your medical professionals – let them know it!

If you are upset at the assault on your child’s public education, take a stand.  Go to your school board’s public meetings and make your voice heard.  Maintain your composure but make sure to let the people who are spending your hard-earned tax dollars know you expect better results when they spend your money.

Support your public school teachers.  Go to Back-to-School night and make sure to meet the people teaching your children.  I know from personal experience that teachers value engaged parents more than anything.  Show your kids you care – thank a teacher!

When your local, state and federal politicians propose actions on issues, let them know whether you support or oppose them – especially if you oppose them.  These days, it could not be easier to make your voice heard with your elected officials – their phone numbers and email addresses are readily available and should be handy at all times.

Put them in your cell phone!  Follow them on Twitter and kick Kim Kardashian to the curb.

Demonstrate to your children that we all have a voice and we can use it!  Show them that you care about their health, education, and living standards.

Because if you don’t speak up when you have the chance – if you don’t value the freedom you’ve been given enough to use it on a regular basis – that will be the next thing our children lose – their freedom.

That is not a legacy I am willing to leave to mine.

“If our American way of life fails the child, it fails us all.”  Pearl S. Buck

I intended for this week’s post to be about air and water.  I still intend to post a piece about that, but something else occurred to me this morning.

Today is my 58^th birthday – and Liz Taylor’s 79^th.

I posted birthday greetings and get well wishes to Ms. Taylor via @DameElizabeth  on Twitter this morning.  She has been in the hospital.  I also asked my Twitter followers to post a Happy Birthday to her, if they are so moved.

And I think they should be.  Why?  Because every actor is a vehicle for story-telling.

Liz Taylor has served story well for most of her life.

She began her career as a child.  If you have never seen “National Velvet”, please do.  It is a classic.  My favorite Liz Taylor film is “Who’s Afraid of Virginia Woolf?”  Liz won the Oscar as Best Actress for this film, and I believe she deserved it.

Part of a balanced life is taking the time to relax, and good stories – whether they are presented in print or on film – are a great form of relaxation.  And for getting in touch with your feelings – a good story always makes contact with us on an emotional level.  That’s the reason they stay with us.

Storytelling used to be the way we passed information on through the generations – the oral/aural tradition.  Theater was born out of this.

Then we were blessed with the print medium and got books, newspapers, and magazines.  Eventually, film arrived and story could be told in a visual medium that is very different from theater.

I am thrilled that this year, the Academy Awards telecast falls on my birthday.  I plan to spend this evening watching and rooting for my favorites.

I have watched “the Oscars” every year of my life since I was 10 years old.  Not because I am star-struck, but because I believe in the power of a good story, well told.  And for me, the “Oscars” honors the best of the people in a business that specializes in telling stories well.

My mother knew how to tell a good story.  I can still remember some of them and see my mother’s face and hear her voice and remember how I felt as if it were yesterday and not over 50 years ago.  That is the power of a good story, well-told.

Mom taught me to read at age 4, and she insisted that I read good books – no junk.  I’m talking “classics” here.   In fact, I still have the classic books I received on a regular basis as a child.  “Black Beauty”, “Little Women”, “The Prince and the Pauper”.  Good stories, brilliantly crafted.

Although we had a television, it did not have a central place in our home.  My mother insisted that books were more important.  Her only concession to TV was classic movies.

In my youth in New York, “Picture for a Sunday Afternoon” was a regular weekly show that featured classic films.  After church, we would have an early afternoon Sunday dinner (very formal – good china and silverware) and then relax by watching “The Yearling”, “Pat and Mike” “Wuthering Heights”  “White Heat”.  Each week I was treated to a fine story.  This is where my lifelong love of classic films was born.

These shows introduced me to Jimmy Cagney, Spencer Tracy and Katharine Hepburn, Lawrence Olivier, Olivia de Havilland, Gregory Peck, and Elizabeth Taylor, along with many others – far too numerous to mention.

But, again, I was never “star struck”.  I admired – and still admire – actors as instruments of writers who craft good stories.   I have never seen a really fine actor who does not acknowledge that they would have nothing to do without the writer.

As I grew older, I began to develop a great appreciation of the film director as the guardian and champion of the story.   The best directors (Martin Scorsese, Francis Ford Coppola, Steven Spielberg, William Wyler, David Lean, Frank Capra, Billy Wilder) understand how to frame the story and how to get the best performance out of the actors.

If you have ever seen any of the following films, you have experienced the power of story:

The Aviator, The Godfather, ET, Ben-Hur, Lawrence of Arabia, It’s a Wonderful Life, Double Indemnity.

I am still a voracious reader.  There is always a Nora Roberts book in my eReader, which sits on my nightstand when it’s not in my gym bag!  And I am eagerly waiting the next Jodi Picoult book.

But in an hour or so, I will sit in front of my television and celebrate some of the best of this year’s stories – “Black Swan”, “The King’s Speech”, “The Social Network”, “Inception”, “127 Hours”, “The Fighter”, “The Kids are All Right”.

If you haven’t seen these films, I hope that you will.  They are all good stories, well-told and lovingly crafted by the directors and actors nominated along with them.  I have seen them and I was touched by all of them.

And if you are watching the Academy Awards this evening, I hope you will pay a silent tribute to Elizabeth Taylor and wish her a Happy Birthday!

“Acting deals with very delicate emotions. It is not putting up a mask. Each time an actor acts he does not hide; he exposes himself.”  Jeanne Moreau