Archive for March, 2010

Memento Mori

2010-03-29

Today the effort should be done,

Who knows if  ‘morrow death will come?

— from The Word of the Buddha

Since antiquity, serious thinkers have kept reminders of their mortality close at hand, to help free their minds of earthly bonds and distractions.  Frequently they would be portrayed holding a skull, or having one on their desk, their memento mori, remember that you will die.

To the Anchoress of Sterling, they come unasked.

The Anchoress sat working by the window, next to the new basket of spring bulbs that are vigorously sprouting.  The Anchoress turned from her squint and spoke to me.  “For the past three minutes I lost the ability to write.”

“How so?”

“Three times I tried to write a note.  Each time, when I looked at it, it was as though I was looking at a foreign language.  I didn’t know what the letters were or what the words meant.”

“Is the inability gone entirely now, as though it never was?  Or, are there remaining effects?”

“There are remaining effects.  I am repeating letters too many times when I spell words.  And I am confused, still.”

After more pointed questioning, she asked, “Do you think that I am going to lose the ability to write, permanently?”

“Yes.”

“Then I’ll just move on to dictating, as we talked about.”

“It may not be for a long time yet.  You’ll have better days, and worse.”

“It’s not how I thought it would be.  I thought it would be there one minute, and then it would be gone.  But it’s more complicated than that.”

“You mean thinking that you’re writing someting correctly, and it being wrong, and then realizing that it’s wrong.”

“That’s it.  It’s exactly like you said, What was the word?”

“Interface.”

“Yes, it’s exactly like an  interface problem.  Like with the computer.  I know what I am trying to say.”

“But it just doesn’t come out right.”

“It’s very upsetting.”

“I know.  And scary.  I think we need to concentrate more on the more important things, while you can still write, and spend less time on the unimportant.  Only do the unimportant things after you are unable to make progress on the important work.”

“You’re right.  But there are some things I want to do.”

“It’s important that you follow your interests.”

“You’ll have to remind me, prompt me, because I can’t remember.  You’ll have to come close and sit with me, and help me along.  Once I’m writing, I love it and I can lose myself for hours.”

“I know.”

“It’s strange that you can have something be so important emotionally, that you are reluctant to approach it.”

“But it’s a very natural response, a paradox.”

Philippe de Champaigne, Life, Death, Time

Vanitas, Philippe de Champaigne , 1671

Posted in Bhakti, Dying, FTD, The Anchoress of Sterling | Leave a Comment »

Living with FTD-suffering

2010-03-22

I recently read an article “You will call, I Will Answer.”

Anyone who is going through suffering will be able to relate in some ways to William Stunz’s account of his life.  I don’t totally agree with everything that he says.  It has helped me over the years  to read accounts of other people’s suffering and also talk to other people who are suffering.  Each person who is suffering  needs to find tools to cope.

A book that I hold close to my heart is “The Revelation of Divine Love” by Julian of Norwich.  I can give you no better explanation of the connection I feel with the Anchoress than Selch describes in his recent post.

Stunz talks about how he felt when people inadvertently blamed him for his pain due to lack of faith.  Many of us who have an illness or who are  caregivers have  experienced well wishers who tell us we need to have more faith or things would be better if we prayed more often.

I was raised in a family who went to a fundamentalist Christian church.   Now I practice  Bhakti Yoga and Theravada Buddhism.  I do not judge anyone’s faith or religion.  All paths  lead to God. We are all a part of God, brothers and sisters, connected by our souls.

Why does God let bad things happen to good people?  There have been countless books written on this subject and for many, this question has no answer.

Dr. Stunz says, ” I do not think that my suffering is God’s discipline.”  I agree that suffering is not literally “God’s discipline”, but I do believe in  karma good and bad.  We make our own karma, some life experiences are decided before we come into this life and in other matters we have free choice.  We are also affected by other people’s karma. Karma has helped me personally to  understand suffering.  What is good for spiritual growth may not seem like a good thing for us while we are living in our physical bodies.   The reality we perceive as humans is only a small part of  “The Truth.”

This does not make suffering less painful or less real for us.

Stanz recounts about whether or not suffering has made him a better person. We have heard many times that suffering will make us stronger and that is the last thing we want to hear.  My own experience parallels the experience of Dr.  Stanz.  At first, when I developed chronic pain I was overwhelmed by sadness, depression (anger turned towards myself) and despair.  I came to realize that I did have a choice, give up or go on with my life one day at a time.  If I dwell on the past too long , it does nothing to change my current life and it wastes the limited energy that I have that could be used in a positive way to make myself and others feel better.

For those of us who suffer and those of us who are caregivers, we must realize that life changes for everyone.  Chronic illness, FTD in particular, changes our lives, behaviors of the caregiver and of the loved one, in  particularly difficult and often incomprehensible ways  While the illness robs us of many things, the part of us that is real and true, the being who cares, loves and wants to reach out to others is still there.

When a woman is grabbing the arms of her husband  because he is trying to take the car keys in a boorish and childish manner because he has FTD and doesn’t believe or remember he can’t drive, doesn’t she think of the many times those arms around her made her feel safe and warm?  She has reminded him so  many times lately that he cannot drive and she thinks about when she may have handed him keys with no thought of peril for his well being.  When you can’t manage not wetting your pants do you ever think about the time not too long ago when you put your pants on one leg at a time without any thought and managed an entire department of people?

We must not forget who we are, our true selves and understand that the disease is causing these troubles and behaviors and the disease is not who we or our loved ones are.  We should hold tightly to this life rope that connects us to who we really are.  It will help us hold on to our dignity and compassion for ourselves and our loved ones during the most trying times.

I agree with  Dr.  Stanz that accepting that I had a terminal illness was easier than I thought it would be. Once I accepted that everyone dies,  I am understanding there are blessings  that come with  a shorter span of  interaction time with the world  so I should try to enjoy things while I can

I had an eating disorder when I was young and I have never liked food.  Now I really enjoy eating.  Selch is cooking dinner right now and preparing fruit salad.  Who would have thought that fruit salad could be downright delightful?  I appreciate small things like chocolate pudding, looking out the window and watching the birds,  and talking to an old friend.  It is a struggle for me to go out anywhere, but I still find activities that make me feel good.  Like  Stenz said, he was able to feel more physical pleasure.

I often go to Second Life which is a virtual world on the Internet.  I have an avatar there who can fly, swim, sail, see many beautiful places and visit many interesting people.  I think allowing fantasy and creativity in to your life when you are suffering is a good thing.   We have forgotten how to play as we did when we were children.  Yes we have responsibilties but  all of us who are suffering could use some play therapy.

Last year was the roughest year of my life.  What helped me get through that bad time was definitely my relationship with Selch,  my partner.  During that time, Selch often teased me that I was Jobette.  One bad thing after another kept happening until I got to the point that I felt like I only had a few things left to lose.

Many things and relationships I thought had to be there for me to ever be happy again didn’t need to be there and were actually impeding progress in my life.

Progress in life has a lot to do with knowing, loving, accepting and protecting yourself as you would your dearest friend.  I can only change what I do.  I cannot change anyone else just by insisting that they be the way I want them to be.

It may feel like we are not in control of our lives because of the circumstances that we are in.  But, we make choices all of the time about how we will react to the situations where we find ourselves.

There is something to be learned from everything that I experience.

I practiced mindfulness exercises before it became “fashionable,” and  these practices have greatly helped me with my struggle with difficult and unwanted thoughts.    To be able to quiet the mind of all its busy thoughts for even a short period of time is very helpful.  Like any exercise the more you do it, the easier it is to do and the benefits are greater.

I am learning  to stop caring about what people think of my situation. Selch and I have to focus our energy on living our lives the best way that we can.  It is so true that real friends will be supportive and if they aren’t, then they are not a “true friend.”  This also applies to family members.

If you are sick or you are a caregiver , it is you who are in the trenches.  You don’t need a lot of well wishers who don’t want to get their hands dirty.

I am in constant pain and FTD is keeping me from “controlling” many areas of my life but I constantly remind myself that the illness cannot control who I am.  Eventually it will disrupt my interface with the world to the point that I will not be able to communicate or understand what anyone is saying to me.  I have spent years in this life continuing the journey towards self-awareness.  What will happen as  I  watch the disease that is causing my physical body to do things I would never do?

Maybe, my weird sense of humor will remain.  I hope I will be able to be tolerant and understanding of that physical body that is the shell of me.

Mr. Stenz spoke of one of his fears of death was the fear of be disappointed that he didn’t live a better life.  I can relate to his feelings.  Sometimes I still do ask my self why I am  here but now  less and less I feel like my life is not useful so why don’t I just die?  I know I have  been given blessings of a well stream of creativity, the dam of writer’s block has burst.  I have so many characters telling me their stories, I often wonder who should I tell what and when in this limited time that I have.

Why do I live? Why is there suffering?  Perhaps, like children we ask many questions but as we grow in time, life (the continuing journey and existence of our being) we will no longer need to ask the question.

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Posted in Bhakti, Chronic Pain, Dharma, Dying, FTD, Living with Illness, The Anchoress of Sterling, Treatment | 1 Comment »

The Anchoress of Sterling

2010-03-21

Julian, or Julianne, Anchoress of Norwich petitioned God to grant her three things.  These were things no normal woman would want.  But then Julianne was not a normal woman.  She was an Anchoress.  Rather than a family and children, she chose to be celibate.  Rather than living in a village, she turned away from the world toward God.  She had herself ceremonially walled up into an anchorhold, a tiny room built against the outside wall of a church or a cathedral, with only a tiny window, a squint, as a portal to the world.  Through the squint, food came in, chamber pots came and went, and advice might be given to those who asked.  She spent her days praying to God.  She asked for spiritual blessings for one who has renounced the world, not for human blessings for one wholly immersed in it.

She sought to experience fully the pain, the suffering, of Christ, in his agony, dying on the cross.  This was the first of her petitions.

The second petition was for God to grant her a terrible illness at a young age that would bring her to the point of death.   Her petition was granted.  She faced her impending death in her anchorhold.   She was attended, it may have been, by a servant or two.  After receiving the Last Rites, she recovered from her illness.

Her third petition was to receive three specific wounds from God:  true contrition, natural compassion, and fullhearted longing for God.  Unlike the first two petitions, she attached no conditions to the third.  While it is charming — to me, at least — that she attached conditions to what she asked from God, not to attach conditions is courageous.  Perhaps the only thing more dangerous in human terms than asking God for spiritual blessings is to ask them of a lesser being.

Later in life, the Anchoress of Norwich wrote about sixteen visions, or understandings, or showings, that God granted to her.  She wrote The Revelation of Divine Love so long ago that the English she wrote then has to be translated into English we can understand today.  It was the first book by a woman written in English.  She saw God’s divine love as the love of a mother.

I know another anchoress, who is still, for now, among the living:  The Anchoress of Sterling.  (No, not the worldly-wise Catholic woman who blogs as The Anchoress!  A real anchoress.)

To the Anchoress of Sterling, all the blessings Julianne sought have been granted, without petition.

Her physical sufferings have exceeded those of Christ on the cross. His pain extended for days.  Hers are more severe, and for more years than his days of pain.

She has been granted at a young age severe physical illnesses — not one, but several — that will take her not only to the point of death, but to death and beyond.

She has born the three wounds throughout her life.  These wounds are so much a part of her, that her greatest fear facing death, is that she may be deprived of them.

She lives as a celibate, in an ashram or abbey, in a small room, in a single reclining chair.  She cannot lie down on the bed in the room, as it causes her great pain, and vertigo.

She spends her days praying to God.  She sees God as a girl or young woman.  Her rosary is from a Catholic Domitilla, her prayers a great Vedic mantram with bijas.   She also practices Theravada Buddhist mental culture.  Her squint is a notebook computer, with a wireless internet connection.

She has a rough-spoken manservant, whom she met on the internet a decade and a half ago.  He became her lover, then her spiritual teacher, then her husband, now her servant.  He sleeps on the bed next to her chair, and tends to all of her physical needs.  He also spends his life praying to God, doing the mental culture of Mindfulness of In-and-Out Breathing, cultivating love for his mistress, and working at a job to provide for her needs.

Her strength of resolve and her creativity are both increasing as she approaches the end of this life.  This blog is one of her happy conceits, a metaphor of her life.  She is a were-seal, a silkee of Celtic lore, who lives in the sea, sheds her seal skin to live and breed on dry land as a woman, then must leave her husband and children, don her sealskin, and return to the sea.  The sea is the heaven she left to suffer in this comparative hell, and to which she will return.

Posted in Bhakti, Chronic Pain, Dying, The Anchoress of Sterling | Leave a Comment »

Brain Scan-I Feel Your Pain

2010-03-05

I just read an article about a brain scanner that may be able to help assess pain.

“The definition of pain is that it is subjective, and until now an objective measurement has remained elusive,” says Morten Kringelbach of the University of Oxford.”

As I have read before, the author points out that functional MRI scans have been used before to identify brain areas that “light up” when someone is in pain.  I was excited about this news when I first read it until I found out results varied from patient to patient.

I have never read about  analysing arterial spin labelling that  measures how much oxygenated blood is flowing through particular areas of the brain.

The procedure seems interesting but their participants for the study were 16 young men who had just  had their wisdom teeth removed not chronic pain patients.

Perhaps it will provide an additional way to assess pain in addition to the well-known “pain scale” which I agree with the author is an ” inadequate measure of pain”.

I’m not sure that identifying which areas of the brain are involved in a person’s brain will lead to personalized treatments that target those areas until we have drugs that are better able to target specific areas of the brain for treatment. Of  course physicians are learning more and more about which drugs work in certain areas.  For instance, methadone works better for central pain.

As the article points out, there are challenges because responses to pain do vary throughout the day and there will be differences in the level of brain activation in one person to the other.  Pain is still a complex issue and there is still much to be learned about pain syndromes.  Emotions affect pain and now physicians are learning that chronic pain can spread like a cancer and “glob on” to various emotional responses.

Jeffrey Mogil brings up the possibility of the brain scan being used to measure pain in people who are locked in and who are in a vegetative state.  I’ve been doing some research about this phenomena of being “locked in” because of my frontotemporal dementia.  I wonder what I will be able to feel once I am no longer able to communicate and no one is able communicate with me.

This is a picture of New Scientist Magazine.  I have found some really interesting articles in this publication.

In the article, “Coghill warns against disregarding someone’s description of pain in favour of an objective measure. In the US, insurance companies would jump on an objective method of measuring pain, but this could mean that certain people with different patterns of activation lose out,” he says. “We need to ensure that patients are never in a position where they are denied treatment.”

The idea that insurance companies might want to jump on the band wagon to use this tool to deny chronic pain patients treatments and meds is a real possibility as those of us with chronic pain know all too well.

The last part of the article discusses whether pain is a symptom or a disease.  After much research and many discussions with a very intelligent pain management doctor who is always “up” on the latest research, I have concluded that pain is not just a symptom but a disease.  Remember about the finding I discussed earlier how in chronic pain, these pain signals latch on to all sorts of neurological responses?

The researchers mentioned in the article agree that  chronic pain is associated with functional, structural and chemical changes in the brain which redefines pain as a disease.

Let’s hope that further research continues to validate that chronic pain in reality is a complex disease that needs to be treated.  It affects the lives of millions of people all over the world.

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Posted in Chronic Pain, FTD, Health care issues, Living with Illness, Opioid therapy, Pain Management, pain management specialist, Physicians, Treatment | 1 Comment »

Chronic pain- Recent Updates

2010-03-04

Hi everyone,

Recently, I’ve been having a difficult time with various illnesses  so I am a little behind on posting.  I have found multiple articles that may be helpful to those of you with chronic pain.

First let’s discuss slow breathing might help pain.  I first learned about this practice in prenatal classes prior to the birth of my first-born.  Imagine the scene on of Alien when Sigourney Weaver’s guts were being ripped apart by the alien.  Slow breathing did little to help 13 hours of Pitocin induced hard labor.

Fortunately, I have found tha slow breathing can be affective for chronic pain as well as anxiety attacks related to my FTD.  The author also mentions mindfulness exercises which I do incorporate with slow breathing.

Try to sit in a relaxed position.  Breathe slowly and concentrate on each breath and how it feels as it goes in and out .

Regarding mindfulness exercises, the mind is a wild horse and it takes awhile to “break it in.”  If you continue practicing mindfulness exercises which can be something as simple as repeating one syllable phrases over and over again, the results you will gain in helping to control your pain will be well worth the time.

The next article is Tattletale Pills Remind You to Take Your Medication.  Two topics are discussed.

Companies are using wireless technology to develop devices that monitor whether you take your pills.  One way people may be doing this in the future is swallowing a microchip about as thin as a few human hairs.

Over a two-year period, it became increasingly difficult for me to remember to take my medicines and take the correct dosage.  Fortunately, Selch has worked out a system that makes it easier to make sure I receive correct dosages at the correct times.  He bought a large square pillbox that has little boxes for each day of the week and boxes for morning, lunch, afternoon and bedtime.

He or my aide have to pour my meds which also include pouring  liquid pain medicine  into small plastic bottles for each time I need to take a dose.  Even though we have an organized system, someone still has to remind me to take my meds.

The author of the article writes about  a pill that, once ingested, wirelessly transmits information about side effects and how well it’s working. 

Information is sent it back in a readable form to a cell phone or e-mail account.

I wonder if it also tracks any information about side effects that may occur?  The author writes it might be available as soon as the end of 2011 but I imagine that it will be first  for the kind of medication that gets the most attention and research funding such as cardiac meds.  Still, if it works, it may be able to benefit those of us who take medication for chronic pain and FTD within the next five years.

The other invention discussed in the article is the GlowCap that helps people remember to take their medication.

If I was still taking my meds from a bottle,  I don’t think I would see the glowing orange light.  Also what “melody” are they talking about?  Have you ever seen the movei, “Little Shop Around the Corner?”  Jimmy Stewart plays the head clerk.  The manager bought a large amount of cigar or cigarette boxes that play a melody when the person opens the box.  No one wants to buy them and Margaret Sullivan ends up getting a job as a clerk in the store because she convinces a woman to buy the box by telling her that it is a candy box.  When you open the box to take a piece of candy, the melody plays so it reminds you not to eat too much chocolate.

The next article is New Extended Hydromorphone approved.  Hydromorphone is also known is Dilaudid which is one of the medications I take in liquid form for breakthrough pain.

Dilaudid, in past research, is known to be a short acting medication so an extended release version I think is definitely a plus for chronic pain sufferers because Dilaudid can be very affective in helping pain.  It works by making the person feel like the pain is not as bad as it is.

As Karen says, Exaglo is being released under the REMS program which we in the chronic pain have been welcoming like the plague.

The company that developed Exaglo is CombinatoRx, Incorporated (CRXX) which develops novel drug candidates with a focus on the treatment of pain and inflammation.

An article in Bioworld says Exalgo’s REMS  includes “safe-use tools” for prescribers, patients and pharmacists to ensure the “right patients” get the drug and at the appropriate dosages, he said.

Neuman noted that Exalgo’s REMS is less restrictive than the one Covidien initially had recommended to the FDA, which currently is working on developing a classwide opioid REMS.

As I have explained in previous articles, REMS for other specific long acting narcotics as they stand now are very restrictive and will certainly cause many physicians to stop prescribing these narcotics and many pharmacies to stop dispensing these narcotics.

In Pain Topics.org, they outline the REM requirements for Exalgo.  They sound much like the REM plans for other narcotics.  I am concerned that even if a doctor agrees to enroll in the Alliance program and patients agree to enroll in the program that pharmacists will not enroll in the program.

Let me give you a personal example.

We have recently moved and Sech went to the local CVS to get my pain meds. filled.  We had no problem in obtaining the medication at the pharmacy in the previous state  where we lived . All CVS stores order from the same distributors.  Selch spent three weeks getting the run around from our new local CVS pharmacist before he finally agreed to order my medication.  When Selch brought the meds home, he opened the sack up to discover that the pharmacist had given me the Mylan Fentanyl patches although Selch had specifically ordered the Sandoz patches.  Mylan do not work as well for me.  I am not putting them down, to each his/her own and I bless what ever works for you.

The pharmacists said that Sandoz patches were not available.  CVS stores nationwide order from same distributor.  This does not compute.  If this is the attitude of pharmacists now will they be willing to enroll in this Alliance Program?

Notice in the Pain Topics commentary that” FDA Briefing Material for the meeting  provides no data indicating exceptional abuse liability for hydromorphone and  a clinical study conducted in only 9 subjects that found hydromorphone was no different in abuse potential than hydrocodone or oxycodone.”

Also, “hydromorphone products accounted for less than 1% of nonmedical use of all pharmaceuticals, less than 3% of such cases involving opioid agents, and it was implicated in less than 1% of all drug-related suicide attempts.”

I agree that data does not call for such a restrictive program for this new drug.  Lack of data has never stopped the feds from involving themselves in the practice of medicine and trying to persuade physicians not to prescribe narcotics.  Remember the  DEA practice ofraiding of doctor’s offices a few years ago?

The author of Pain Topics asks, “Will there eventually be separate REMS programs for every opioid analgesic, each with its own registration requirements and prescribing procedures?”

Unfortunately, I say yes there will be if they have their way about things.  I don’t know what drives the DEA and the FDA to practices that are and will keep more and more chronic pain patients from receiving their pain medications.

They consider those of us who need narcotics to have any quality of life an acceptable sacrifice for their stated agenda which is  to keep people from abusing prescribed pain medication.  Even their own studies and data do not show that there is significant abuse in people who take prescribed pain medication.

Taking pain medication away from people who need in it in hopes that it will keep people from abusing drugs(who are taking their relative’s and friend’s pain meds)  is not realistic.  When you cut off one source, people who abuse narcotics will just find another source for their habit. Despite the “War on Drugs,” narcotics are plentiful.  So what have they accomplished?

Are these agencies that naive or is this a power agenda?

I have no idea, but we as chronic pain patients need to tell everyone we know what is going onand  we or our loved ones who understand what is going on need to write our congressmen.  I understand that we are all victims.  We are victims of our illness and victims of the medical and governmental system.  But, the only way I  see that we can make a difference is if we ban together and tell anyone who might be able to help us in our cause for the right to have adequate pain relief.

There are some rays of hope in this darkness of denial such as the MayDay Pain Project.  John Stossel recently did a program about the plight of chronic pain patients, War on Pain.  It was on the Fox Business Channel so most of us were unable to see it.   To watch the program go here.

One of the physicians in the practice where I go for pain management is involved in the MayDay project.

Let’s all pray that someday soon this world will WAKE UP.  Until then, remember we are all brothers and sisters united by our souls.  Whether you believe it or not the thoughts that we think may affect our reality so try to think positive thoughts.  I’ll be thinking positive thoughts for all of you and know that you are always in my prayers.

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Posted in Chronic Pain, consumer driven health care movemnet, DEA, FDA, FTD, governmental regulations, Health care issues, Medical System, Opioid therapy, Pain Management, Physicians, REMS, Treatment, WarOnDrugs | 1 Comment »

Do we really want socialized medicine?

2010-03-01

I’ve known about the perils of socialized medicine for years.  I use to work in the health care community and I heard horror stories from doctors and nurses who had lived in a country where there is socialized medicine.  I just read an article called Annals of Government Medicine. It paints an accurate  picture of problems with Socialized Medicine.

The people who want to cram socialized medicine down our throats say,”Take this, I know it doesn’t taste good but Mommy or Daddy knows what is best for you.”

To me a “nanny state” means we get thrown off to some “nanny” i.e. the government who is getting paid to take care of us.  She will most not likely treat us like we are her own, encourage free thinking or independence.  If we are able to go out and stand up for ourselves, she no longer has a job.

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Posted in governmental regulations, Health care issues | 7 Comments »