For Patients

Bad head so this will be short. 

I was worried about you, John, but it sounds like you have some things you can do.  This might seem like left field to you, but look up "cranial sacral therapy";  it does require a leap of faith, but I had an amazing experience with it and the practitioner I know has physicians calling her all the time when the conventional isn't working.  Just a suggestion for a non-toxic possible remedy!  Or eat Greek style yogurt!!!!! (just kidding!)

Africa-I hope your problem resolves soon; I will be thinking about you.   I always hate when the treatment is as bad or worse than the problem.  It happens a lot, though.

Have a nice Groundhog Day!  They will be pulling poor Phil out of bed again!  I hope everyone is well.

Kat

a little reading from Richard's column

From John Edwards, lessons on celebrity and politics
   
By Richard Cohen
Tuesday, January 26, 2010

Some years ago, I was having lunch with John McCain in the Senate dining room when a new senator stopped by to say hello. He was John Edwards. His smile was capacious. He exuded happiness. He was articulate and friendly, and when he left, he got a behind-his-back endorsement from McCain: Keep your eye on him, McCain counseled. And so I did.

I followed up by meeting with both John and Elizabeth Edwards at their home. She served sandwiches, as I recall, and then sat down to join us for one of those heavy policy discussions that mask formidable ambition. This was an impressive couple. Washington hummed. The Edwardses could go all the way.

Now all that promise is ashes, a political career consumed by what is usually called a sex scandal. Sex there was -- a confessed extramarital affair that produced a child and that was punctuated by bravura lying on Edwards's part. The story has been both appalling and titillating, but the tabloid nature of it should not obscure its larger lesson: John Edwards could have become president.

Within six years of being elected to the Senate and with no previous political experience, Edwards was the vice presidential nominee. He was on the ticket with John Kerry, who lost, it's true, but he was still on the ticket. As Spiro Agnew or, for that matter, Eliot Spitzer proved, in politics nothing is certain.

I have been particularly harsh on McCain for his irresponsible choice of Sarah Palin as his running mate. I withdraw none of it; the better we got to know Palin, the more egregious a choice she became -- astonishingly unprepared and unsuited for the presidency. She proves, if anything, that McCain was, too.

But what, then, can we make of Kerry's choice of Edwards? It is not quite in the Palin category, since Edwards had been in the Senate for one term and had made a career for himself as a stunningly successful trial attorney. Still, not only did he lack legislative achievement, but, in retrospect, it's clear that little was known about him. He dazzled as a political matinee idol -- a profile, a speech, a mirage of a marriage.

The out-of-nowhere rise of Palin and Edwards in less than a decade is warning enough that something is wrong. I will also throw Barack Obama into the mix, not because I know something nefarious about him but because I realize more and more that I know so little about him.
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When, for instance, the call goes out to let Obama be Obama, I'm not sure what that is. For the moment, it's a tendentious populism, but the sound of it is tinny and inauthentic, a campaign tactic, nothing more. When, however, we were asked to "let Reagan be Reagan," we could be certain it was a call for a hard-right turn. Ronald Reagan had devoted many years to the conservative cause. Obama, in contrast, was in the Illinois Senate just six years ago.

It is characteristic of our times that the moment Scott Brown won the special election for Ted Kennedy's old Senate seat, he was asked about presidential ambitions. He had the good sense to demur, but surely when his head hits the pillow at night he hears a lullabyish "Hail to the Chief." If Obama could go from Springfield to Washington in a flash, if Palin could go from Juneau to her own campaign plane, if Edwards could go from courtroom to the vice presidential nomination in a wink, why not Brown? Never mind that we know next to nothing about him.

Time matters. It is slow (unless you are old) and tedious, but it is truth measured in increments of 60. My early impressions of Edwards faded to disillusion as his colleagues and friends described him as oddly incurious, averse to homework, often unprepared. When he launched his second presidential campaign, we met again -- and I was dumbfounded by what he did not seem to know about poverty, his proclaimed field of expertise. The man was mostly smile.

We have substituted the camera -- fame, celebrity -- for both achievement and the studied judgment of colleagues. The political machine, the organization, even the parties themselves are gone, severely atrophied or discredited as (ugh) mainstream. They once served as filters, admission committees, but they have been replaced by a sham familiarity -- fame at its most beguiling and dangerous. This was John Edwards. He's not a scandal. He's a lesson.

cohenr@washpost.com

this one is a dated but still pertinent

Time to Act Like a President
   
President Obama, French President Nicolas Sarkozy and British Prime Minister Gordon Brown make a statement on Iran Friday at the G-20 summit in Pittsburgh.
President Obama, French President Nicolas Sarkozy and British Prime Minister Gordon Brown make a statement on Iran Friday at the G-20 summit in Pittsburgh. (By Bill O'leary -- The Washington Post)
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By Richard Cohen
Tuesday, September 29, 2009

Sooner or later it is going to occur to Barack Obama that he is the president of the United States. As of yet, though, he does not act that way, appearing promiscuously on television and granting interviews like the presidential candidate he no longer is. The election has been held, but the campaign goes on and on. The candidate has yet to become commander in chief.
This Story

    *
      A Big Card To Play in Iran
    *
      Time to Act Like a President
    *
      The View From Pakistan's Spies

This Story

    *
      Leaving Israel With No Choice?
    *
      A Human Rights Lever for Iran
    *
      Time to Act Like a President

This Story

    *
      Hail to the Booster in Chief
    *
      Topic A: Topic A
    *
      Time to Act Like a President

Take last week's Group of 20 meeting in Pittsburgh. There, the candidate-in-full commandeered the television networks and the leaders of Britain and France to give the Iranians a dramatic warning. Yet another of their secret nuclear facilities had been revealed and Obama, as anyone could see, was determined to do something about it -- just don't ask what.

The entire episode had a faux Cuban missile crisis quality to it. Something menacing had been discovered -- not Soviet missiles a mere 100 miles or so off Florida but an Iranian nuclear installation about 100 miles from Tehran. As befitting the occasion, various publications supplied us with nearly minute-by-minute descriptions of the crisis atmosphere earlier in the week at the U.N. session -- the rushing from room to room, presidential aides conferring, undoubtedly aware that they were in the middle of a book they had yet to write. I scanned the accounts looking for familiar names. Where was McNamara? Where was Bundy? Where, in fact, was the crisis?

In fact, there was none. The supposedly secret installation had been known to Western intelligence agencies -- Britain, France, the United States and undoubtedly Israel -- for several years. Its existence had been deduced by intelligence analysts from Iranian purchases abroad, and it was pinpointed sometime afterward. What had changed was that news of it had gone public. This happened not because Obama announced it but because the Iranians beat him to it after discovering that their cover was blown. They then turned themselves in to the International Atomic Energy Agency in Vienna and, as usual, said the site was intended for the peaceful use of nuclear energy. These Persians lie like a rug.
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No one should believe Mahmoud Ahmadinejad. Iran seems intent on developing a nuclear weapons program and the missiles capable of delivering them. This -- not the public revelations of a known installation -- is the real crisis, possibly one that can only end in war. It is entirely possible that Israel, faced with that chilling cliche -- an existential threat -- will bomb Iran's nuclear facilities. What would happen next is anyone's guess -- retaliation by Hamas and Hezbollah, an unprecedented spike in oil prices and then, after a few years or less, a resumption of Iran's nuclear program. Only the United States has the capability to obliterate Tehran's underground facilities. Washington may have to act.

For a crisis such as this, the immense prestige of the American presidency ought to be held in reserve. Let the secretary of state issue grave warnings. When Obama said in Pittsburgh that Iran is "going to have to come clean and they are going to have to make a choice," it had the sound of an ultimatum. But what if the Iranians don't? What then? A president has to be careful with such language. He better mean what he says.

The trouble with Obama is that he gets into the moment and means what he says for that moment only. He meant what he said when he called Afghanistan a "war of necessity" -- and now is not necessarily so sure. He meant what he said about the public option in his health-care plan -- and then again maybe not. He would not prosecute CIA agents for getting rough with detainees -- and then again maybe he would.

Most tellingly, he gave Congress an August deadline for passage of health-care legislation -- "Now, if there are no deadlines, nothing gets done in this town . . . " -- and then let it pass. It seemed not to occur to Obama that a deadline comes with a consequence -- meet it or else.

Obama lost credibility with his deadline-that-never-was, and now he threatens to lose some more with his posturing toward Iran. He has gotten into a demeaning dialogue with Ahmadinejad, an accomplished liar. (The next day, the Iranian used a news conference to counter Obama and, days later, Iran tested some intermediate-range missiles.) Obama is our version of a Supreme Leader, not given to making idle threats, setting idle deadlines, reversing course on momentous issues, creating a TV crisis where none existed or, unbelievably, pitching Chicago for the 2016 Olympics. Obama's the president. Time he understood that.

cohenr@washpost.com

Hi Everyone- I just read a local news article that surprised me. An 81 year old woman went for an MRI.

She called her Doctor for the results. The Doctor billed Medicare for a 15 minute phone call-telling the

patient the test results. I have never encountered this practice before- has anyone else?

Laurie

Yes, Laurie, many physicians feel they should be compensated for time spent with a patient whether in person or on the phone.  I read that it partly comes from the fact that other professionals such as lawyers start the clock the minute they say hello other than the initial "consultation".  Phone care is considered part of the whole healthcare of the patient and since doctors can end up spending  a lot of time on the phone, they feel they should be able to charge for it.  I am only telling what I have read.  I believe they are supposed to inform you ahead of time, however, if that is their policy.  So, yes, I have heard of it, but no I have not encountered it yet.  Of course, it may be factored in to the fees without specifically saying it-not sure.

Katiea-The articles are provocative.  I find the phenomenon interesting about WHO actually ends up as a candidate for high political offices.  I agree that it is a combination of matinee idol, PR and hopefully some experience.  Ronald Reagan remains one of the most popular presidents of all time.  I am not sure if that is because of his political expertise or something else.  The reason I mention it is that Jenny Sanford's book is coming out on Friday instead of April or May.  Her husband Mark Sanford (soon to be ex) was definitely a frontrunner for the presidential nomination next time.  He chose to "hike the Appalachian Trail" instead of dealing with running the state of South Carolina, being a father to four boys and a husband.  His political career has similarly imploded.  I can't begin to explain why these men behave in this way, but one can't help but see a really amoral pattern starting or
continuing.  I am not judging them by any means, only pointing out the facts.  I just think there have been too many tell-all books in the political arena.  I sort of thought these people cared about working for the good of the people and were interested in upholding the laws set forth in the Constitution.  They seem to be distracted in my opinion-REALLY distracted!  If an attractive woman can seize their attention so completely, what would happen in a real crisis when attention would truly be required and the object of attention not a "babe"?  (I guess there is a little judgment there!)

I read Elizabeth Edwards' book and I will read Jenny Sanford's as well-I have not read any of the others such as Dina Matos McGreevey's.  I read them to try to understand why did the men do what they did in the first place and if the ways in which the wives deal with the issues, reflect how the rest of us deal with them.  I realize the behaviors are not new; but they HAVE become the new soap operas unfortunately.  I am as guilty as anyone of voyeurism because I do read the books.  I find them compelling, especially from the point of view of the wives.  I also, as a chronically ill person who has been forced to give up so much, have difficulty understanding the concept of being at the top of one's game and having a lot if not "everything" and throwing it all away for I am not sure what.  "MEH" was voted a couple of years ago as the best new word by some dictionary people.  It is used in text messages to mean "I don't understand or I don't get what you are saying, etc"  So I will end with a simple: MEH?

Kat

Hi All~

"A lawyer's advice is his stock in trade." That's why they bill for phone calls and every other word out of their mouth. Doctors? I think the clue was Medicare. Medicare pays a fraction of the doctor bill. I guess docs feel they need to get some compensation any way they can. If there's a code for phone consultations, I don't blame them for using it.

I once worked for NEA. National Education Association. The young men on staff would go into the field of upstate NY and have their pick. Sometimes, picks. There is something about the political (and the NEA is nothing if not political) arena that causes one to feel invulnerable and very desirable. Powerful. Rich (on someone else's dime). It is hard to keep your head when all around are losing theirs...over you. There's drink and hotel rooms. Look at the life Tiger led. Same dynamic. Amnesia in the morning.

Sorry I forgot to clean up the second article. I agree mightily with Richard on this one. I'm still waiting for POTUS to act like it. He's a rockie playing badly in the big game. Powerful...with our money. Do you notice how often he puts his hands in his pockets??? Hmmmm.

Winter is the transition season in Florida, I've come to find. Jan/Feb the temp range is very wide and changes drastically day to day. Despite that, I'm feeling better. Able to tolerate a decent amount of LDN. Not where I was...but on my way, I hope.

good Wednesday to all
Katiea

My friends -- Katwoman, Spitball, Katiea, Africa, nuvinder, Bigd, and everyone else -- I appreciate your thoughts and concerns.  I do seem to feel somewhat better this week than I have for awhile since I increased my Azithromycin 250 mg from every 4 days to every 3 days -- started last Saturday.  I also got an additional acupuncture treatment this past Monday specifically for my arthritis flare of knees, feet, ankles, hands -- he added needles in each ear and my scalp as well -- not exactly fun, but my pain is more tolerable this week.  I should add that acupuncture needles are very small and only sting briefly when put in; after that I usually go into a meditative state for the 40 or 45 minutes the needles remain in, and I "bask" in the heat lamps he puts over me while the needles are in. 

On the other hand, I had another worrisome blood test result Tuesday just before my IVIG treatment.  I am still waiting for additional evaluation of the blood for further information.  Of course, I will have another follow-up test next Tuesday as I always do before each treatment.  Oddly, I am not very worried or anxious (so far) because I have prepared myself for years for further abnormalities to appear, including possible development of blood and/or immune system cancers.  I hope this is not yet the time to have to deal with that, but if it is, I will.  My goal remains to control my symptoms as much as possible.  I appreciate your suggestion, Katwoman, but for now will continue acupuncture and massage therapy for now, in addition to my IVIG and anti-inflammatory antibiotic (Azithromycin) treatments.  If (when, more realistically) I develop cancer, I am going to be reluctant to accept any toxic treatment which may further harm my already damaged immune system -- but I will cross that bridge when I come to it.

On a more positive note our older son, his wife and grandson Griffin will arrive here next Thursday for a 3 week visit over Chinese New Year vacation break.  I am now looking forward to it with less anxiety since I, at least for now, feel somewhat better.  Slowly we are getting the house (relatively) cleaned and in order.  My wife has gotten many toddler books and toys out and ready for Griffin who is now 33 months old and talking more and more in English and Chinese.  More later after they arrive.  It has been fun to see and talk to him, and his parents, every week via the "magic" of the Skype phone and video system every week as we have for the past year or more.

I appreciate any and all positive and healing energies and prayers you send my way, and I, in turn, send back the same to each and every one of you.  Your friend, John.

John, you seem to have gotten a little gift from Heaven with your family's visit coming up!

It is odd how something small like talking about pedicures with my hairdresser can lead to such despair.  The salon where I go is having an event one afternoon where they donate all of the money for certain services to Haiti.  I didn't get an appointment, but that's okay.  Anyway, my hairdresser started to tell me how she loves pedicures.  I mentioned how great they are because they tend to last longer than manicures.  Then she said, "Unless your toenails start to fall off."  I thought it was odd, but she continued to explain that when she runs a lot for exercise, it causes friction on her toenails and you can figure out the rest.  At that moment, I almost lost my breath.  All my former days of running and exercising and raquetball and cross country skiing descended over me in a wave.

D***,  I thought, it was slippery out today because of a little snow and my goal had to be to just walk into the hair place without slipping!  AND she is talking about half marathons!  Time almost stood still in that place between the way you want it to be and reality.  The silver lining could certainly be that my pedicures will last for months, but it wasn't enough and isn't enough.  I do intend to keep working on this problem, but all the therapy in the world is not going to change the longing or the grieving.  It will not make the former activities possible in the way they used to be.  I frequently was bothered by thinking I was allowing myself to "settle" in certain instances and now I am forced into it.  I feel a funk coming on... Thank you for listening anyway.  [Today I get to have blood drawn.  WOW!!!!!!!!! Can't even eat until after the 11 appointment either-maybe I need sugar.]

I hope everyone has a good weekend, snow or no!

Kat

Katwoman -- I think and feel your post is very insightful -- even lyrical (I think that means poetic, but not quite).  In any case, I believe you have captured in your story of visiting your pedicurist the essence of the constant and recurrent grieving each of us with chronic illnesses go through over many years.  Obviously, each of us deal with thoughts such as you express in different ways, and each of us changes how we respond over time -- even day to day.

I definitely am feeling better after a week of taking my Azithromycin anti-inflammatory antibiotic every 3 days rather than every 4.  That is the most likely reason I am feeling better, although I also got 2 acupuncture treatments within the past week also.  I find I am worrying less about the blood test results than that I am feeling better, am having more (relative) energy, am able to function better and do more things this past few days.  I know there is nothing I can directly do about the blood test results until they are further evaluated and repeated -- the one I mentioned from last Tuesday which really got my attention with "reactive lymphocytes" will be repeated in any case this coming Tuesday as I always get that blood test before each IVIG treatment. 

I guess the bottom line for me, at least for now, is that as long as I feel overall better and function better, I will deal with whatever comes as it comes.  Only 4 more days til our son and family arrive. 

I hope everyone is doing reasonably well and each of you is having a weekend with some silver linings.  Your friend, John.

John, I am glad to hear you are feeling better. Sending healing energy your way. Hope you have a great visit with your son, daughter in law and grndson.
Katiea, the article was a great read. Perhaps you don't know that many Canadians follow American politics with great interest. Perhaps it is the "celebrity" feel of them. There is no doubt that this last election was an attention grabber.
Katwoman, I too wish that sad thoughts wouldn't catch me off guard. I feel much the same way you did when I see a school bus pass the house. I start thinking about my life before chronic illness and how much I miss teaching.
Spitball, I don't know much about your medicare system but I know some doctors charge the government for phone calls up here.
This will be a rather busy week for me. I see my psychologist,psychiatrist,occupational therapist and go to bible study.
The topic of study this week is God's mercy. I did a lot of reflection on this topic.
Oh by the way, Katwoman how is your writing course going ? Are you learning a lot ?

Grace and Courage To All
Africa

"Lyrical" it is , John!  Enjoy your visit!

Africa, my writing course starts soon.  Thank you for asking.

I didn't watch the Superbowl, but it is nice that the Saints had their chance to win.  Apparently "Pinball Wizard" didn't quite have the edge it used to during half time! Of course, a portion of the population probably has never played an actual old time pinball machine either.  I usually scratch my head at the choices made for the entertainment, but then who can forget the "wardrobe malfunction" ?  It has become part of our language!  Maybe life imitates the Superbowl... winners and losers.  I suppose we all have some instinct for the Roman Games-not too much has changed except for the lions. (at least literally!)  'nuf said  The MONEY involved is amazing though.

When all the snow was falling I was thinking of the old days.  Did anyone who lives where it snows ever put FRESH snow in a bowl and put real maple syrup on it for a winter treat?  Nature's snow cone!!!!!  Also, did you ever get a maple syrup icicle from a branch of a sugar maple tree where the branch cracked and the sap and water made an icicle that tasted mildly like maple? Norman Rockwell lives on... Was the snow deeper or was I just shorter?

Another blizzard is predicted for Wednesday.  I guess Phil is getting us back for waking him up!  Next year there will probably be a robot anyway so I am not sure if the prediction will be genuine!  I am an animal lover so I am poking a little fun here.  I don't believe that Phil is lacking any groundhog requirement.  Yes, I am sure he is annoyed for the short time he is snatched out of hibernation.  I think and hope this tradition is harmless.  My dog isn't crazy about going out in snow up to his neck either, but he lives pretty well!  I always say-"Choose your battles..." 

"Monday, Monday.  Can't trust that day..."  We shall see how it goes!

Kat

Hi Everyone~

John, glad your son + family are coming to visit. They will brighten up your winter.

Kat, I know what you mean. Sorrow hooks one at the most unexpected moments.

Africa, glad you enjoyed Richard's articles. They are archived at the Washington Post site. I bet it's cold up where you are!

It's been a difficult week or two. I had one good day last week followed by three in bed. Does that seem fair? A very close friend of my daughter's died suddenly...on his 28th birthday. Shock! Sorrow. Goes along with death and taxes, it seems to me.

In Florida, winter is a transition season. Temperatures up and down. Rain. Dry. It's 68 now but was 46 when I woke up. Hard on the bod.

Cheers to all
Katiea

Hi Everyone-

Africa, I hope your appointments and Bible Study go well. Are you near Vancouver? Amazing the weather is mild there.

John, Glad you are feeling somewhat better. Enjoy your visit with your family. Can't believe your grandson is 33 months already, and bi-lingual.

Katiea- My sympathies to you and your daughter. The drastic changes in temperature are something that takes me too long to get used to.

Kat- Glad the writing is going well. A couple of friends prefer Greek yogurt too.

I watched the halftime at the Superbowl.  Not a football fan. To those who are, hope you enjoyed the game.

Laurie

Katwoman, Katiea, Spitball, Africa -- I appreciate your comments and healing energy, and what you share of your lives and thoughts.

Today is the day before our son and his family arrive.  I did overdo last weekend to get the house cleaned and in a modicum of order -- though as usual now, my wife has done much more than I have had the energy to do.  There a few more things I will try to do today and tomorrow to tie things up.  The good news is that last week I felt overall better than I have in 6 months -- I believe because I increased the frequency of my medication to every 3 days plus the extra acupuncture treatment.  I felt somewhat worse the past 2 days, but that is not unusual for the day before my IVIG treatment and the day of my treatment.  I am optimistic that I will continue to feel better with my change in therapy -- and my persistent attempt to keep a positive attitude, other than when I feel really miserable.

The other good news is that my blood count yesterday was more "normal" than last week's test -- that means "normal" by the standards of my illness.  I was relieved even though I convinced myself I was not too anxious.  My wife was more relieved than me.  The good last week did for for and my family is I think it prepared each of us for the time at some time in the future when my illness goes out of control and stays that way -- of course, I will continue to work with my physicians to find a way to feel as well as I can no matter what happens in the future. 

I, as always, send positive thoughts, prayers, and healing energy to each of my SATBP friends.  John.

John, I hope your feeling better stays around for your visit.  I have a feeling it will.

You brought up a topic I would like to explore here and that is the "inevitabilities' we each face and how to deal with that.  I just got an image in my mind that my fears of greater disability live in my pocket;  I don't actually think about or face them all the time, but they get carried around.  Every now and then, I reach into my pocket (maybe even by accident) and there they are among the loose change and fuzz.  And there ARE times when the contents of the pocket come falling out onto the floor-they can't be denied then.  I don't know, but I would be interested in anyone else's coping mechanisms.  The topic is very complex, but even little suggestions might help. 

I have the feeling that others in my live who are not living the way I do, don't really think about the future for me/us.  Since I have been pretty much the same for a long time, they take that as the way it will always be.  They don't have that little voice that appears now and then that reminds me that the future may be very different!  of course, no one actually wants to think about it and denial or just plain ignoring are powerful coping mechanisms in and of themselves.

Have a good day.
Kat