Archive for the ‘Living with Illness’ Category

Fresh spoor

2011-11-20

I follow as closely as I can the tracks of my silkee as she wends her way along the strand.  The call of the sea has been strong of late, as she is suffering most grievously here on the shore.

Shortly after the previous post, some nine months ago, she began to have painful spasms in her throat.  Soon she could not eat normal gluten-free food.  She had to go to a soft food diet.  I took her for an EGD.  A few days before the procedure, she began having a different kind of chest pain.  We told the anesthesiologist, and he demanded a cardiac workup.

Off to find a cardiologist, who found low to moderate blockage of one cardiac artery, and prescribed a vasodialator that kicked off abdominal migraines (twelve to eighteen hours of non-stop, uncontrollable vomiting).  Then another med, and a third, all triggering abdominal migraines, before she dropped her as a patient.  The GP refused to prescribe her abdominal migraine meds, because of the heart condition.   She was having ten  to twenty episodes of cardiac pain a day, sometimes passing out, popping nitroglycerine pills and enduring the resultant headaches.  Off to find a second heart doc.  Insurance refused to pay for an arteriogram, we waited to get one done as part of a research project.

By this time she was barely holding on, the cardiac pain and fatigue were so severe, she was unable to do anything:  write, read, watch TV.  Her depression worsened.  Her FTD was getting worse.  Before, she had a wall up to keep out the unwanted thoughts generated by the dying neurons in her brain.  She has practiced for fifteen years a Theravada Buddhist mental culture, anna-panna-sati, mindfulness of in-and-out breathing, the Burmese Forest School version, brought to the United States by G. V. Desani.  She has also her japam, and ishta as a bhakti yogini.  These kept up the wall for years.  Now the wall came crashing down.  Nightmares happened while awake as well as in sleep.  Hallucinations occurred, quickly recognized as such, but disturbing, nonetheless.  She sometimes feels abandoned by God, and has to fight through her own dark night of the soul.

She began falling, and re-injured her knee, repeatedly.  This kicked off pain crises involving her RSD.  Her pain  has been out of control for months.  She now must use a chair-side toilet, as the bathroom is too far away for her to walk.  Other, new pains appeared.  Intense, sharp, deep joint and bone pain; greatly worsened fibromyalgia-like pain.

Cardiologist number two had no clue about how to treat cardiac angiospasms.  I did the research and recommended a treatment plan for him, which he prescribed.  At least he finally gave the approval for the EGD.

The EGD found no pathology other than mild irritation of the lining of the esophagus and stomach.  Smooth muscle spasms again.  Again, GI had no clue of how to treat it.  Referred her to other, useless specialists (we could do some tests, but we couldn’t do anything to treat you, regardless of the outcome of the tests).  Twenty minutes on the internet yielded therapies apparently beyond their ken.  Now off to find a doctor smart enough to prescribe them.

Her heart pain is now fairly well controlled, using the beta-blocker, metoprolol.  This med also eased the nightmares that she has suffered for years.

Her throat spasms are worse, she cannot have even soft food.  She’s on a liquid diet, and sometimes has problems even with that.  Cooking was a way to show her love, now that is gone, too.

Typing is more difficult for her, neurologically.  So we adapt.  She will tell me what she wants to write.  I draft, she comments, and we repeat until she’s ready.  This is the first product.

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Posted in Bhakti, Chronic Pain, FTD, Living with Illness | 3 Comments »

My Beloved

2011-02-19

Hello everyone,

I am so happy to be able to post in my blog today.  As many of you know, I am having difficulty writing, but today I am blessed with the ability to write to you.

I read an article written during the holiday season named  Less Later, More Now! by a blind woman named Marcia Morrissey.

She talks about the stress of the things that we think we have to do for holiday preparations ” which often keep us “too busy” to light a candle and say a prayer, or read a bit of scripture, or that make us tell family members “later” when they need us “now.”

I think this happens in every day life, not just during the holiday period.  I go back once again to one of my favorite authors, C.S. Lewis, who talked about getting trapped in the “noise of humanity” and not stopping to listen to the silence of the spirit and learn what nourishes and feeds our soul and the souls of others.

I have seen a tragic pattern as I have read the countless stories of people in chronic pain or frontal temporal degeneration (FTD).  So many people who are carergivers and people who have chronic and terminal illnesses find the support of family members, friends, even fellow church members slip away.  These people gradually disappear from their sick friend or sick relatives life. They consider themselves well meaning but they are too busy, caught up in the “noise of humanity”. While living their daily lives, they feel burdened down as it is.  I understand these are hard times.

There is work that has to be done then there is “busy” work. Busy work I consider those things we do to distract ourselves.  Or maybe you are out of work right now, you’ve put in all the resumes you are able. You are feeling down so you veg out in front of the television. I know about feeling down and vegging in front of the TV.  We don’t have good cable where we are living now and I am still suffering from Turner Classic Movie channel withdrawal.

When you aren’t doing anything purposeful could you drive over and spend a little time with a caregiver or your relative or friend who is ill?  I can tell you this, one visit from you can make their day a good day and the bright spot in their week.

A little attention goes a long way. Perhaps you could do something, even the smallest thing would help.  If you can’t spend any time going to see them or you live too far away, then call them, send an email or a message on Facebook.

(To my friends, I’m not trying to guilt you into sending a message to me. I know you are there.)

Try for a minute to look at it from their point of view.  You have gone for many years thinking you had a close relationship with your family and friends. Many times you have talked about how you would be there for each other if anything happened.

Then you find out you have a terminal illness.  You expect those dearest to you will come to you and say, “What can I do?”  And what happens?  Your mother cries, “Why does this have to happen to me?”.  Your father shuffles back and forth for awhile, claps his hand on your shoulder then walks off to another room.  Your children stare at you with disbelief, run upstairs to google your illness then come back downstairs and confront you with the news that they found a site that says your disease is not terminal. Your sister is in total denial and your brother, who is a doctor, treats you like a difficult patient instead of the best friend who always understood you.

This unfortunately is not an unusual response. It is quite common.

But then you have to make the choice, do I exit now out of life or choose to go on?  I have chosen to go on.

Understanding that my spiritual self is my true self that journeys on through eternity has helped me to live with the horrible maladies that I face. What we are afflicted with in human terms may be blessings and opportunities in spiritual terms. We have to go on with what we have — like the blind woman or like the guy typing with his toes because he has no use of his arms or me using Dragon speak to dictate — and do what we can in the world.  I think to get through adversity you have to look at this world in more than merely human terms.

There is a difference between the human worldly goods and gifts and things we desire and the spiritual values. What on a human level is a disaster — to be afflicted with a fatal disease — spiritually may be a blessing.  It is terrible to suffer pain and loss, and to suffer from compassion for others that are suffering.  Spiritually those sufferings can have a spiritual purpose, to make us stronger, more compassionate, to have more understanding, and to grow spiritually.  Here in this world, now, with the afflictions and burdens we have to carry.

In my own life one of the major burdens that I have no one can see:  I continually have to keep the dam up against the flood of unruly thoughts that the death of the neurons in my brain is causing.  Unruly is a mild word.  The voices, the thoughts, are not mild.  It can be exhausting just to sit, to all outward appearances, quietly.

As I may have written before, I have spent some time reading the writings of the Saints. Two that I feel are my companions in suffering are Julian of Norwich and St. John of the Cross.   I did not ask for three wounds from God as did Julian of Norwich. Her words of suffering have been a companion in my suffering. I share with her the one of the gifts — wounds — that God bestowed upon her, which is compassion.

I also have found comfort reading the poem, Dark Night of the Soul. Like St. John, I have sought a personal relationship with God. God is the Beloved and I have a place within “where no one else can come.”  Although when I was growing up, I went to a fundamental Christian church every Sunday, I had an amazing experience when I was 13.

I was vacationing with my family in Red River, New Mexico.  We were staying in a lodge in the mountains.  I was reading a romance novel, sitting on a log. I closed the book ad exclaimed to a squirrel, “I am totally bored.”  I decided to go for a short walk.  I followed a path and about after 15 minutes, I looked around me and noticed the forest had changed.  All of the trees had brilliant colored leaves. The brook I noticed was wider and many beautiful fish swam in a pond nearby.

I looked around and saw a beautiful man in a yellow robe sitting not to far away from me.  I knew he was Jesus because he was my conception of Jesus.  He motioned and I laid my head on his lap. He stroked my hair and said words to me that I don’t remember. I felt as if I had come home.  All worries left my mind.  I fell asleep and when I awoke he was gone.

I ran down to tell my brother and he believed because he always use to believe me.  I took him back up the path but we could not find the place. My brother still believed me.  I knew this was not something I could share with my family. They would tell me it was a fantasy and it was pagan for me to say that I saw Jesus that way. Jesus just did not come to individual people in visions anymore.

But I kept this experience inside my heart and after I met my spiritual teacher, I realized I could have a personal relationship with God that needed no intercession.  God is my “Divine Beloved.”

There is a story from the East of a famous saint to whom God appeared as a beautiful girl of sixteen.  He was so tormented by the absence of his beloved when she did not appear, that he felt he had to abase himself to get her to return, to the point of licking dog droppings in the street.

I also have taken much comfort from reading the words from Rumi about his divine Beloved.

The reason I am sharing these personal relationships with God is that this relationship has kept me strong. I have lost just about everything that people lose at one time or another.

In her article Mary quoted the Scripture readings of the third Sunday of Advent, Isaiah 35:1-10:

“…They will see the glory of the lord, the splendor of our God.  Strengthen the hands that are feeble, make firm the knees that are weak.  Say to those whose hearts are frightened: be strong fear not!  Here is your God; with divined recompense he comes to save you.  Then will the eyes of the blind be opened, the ears of the deaf be cleared; then will the lame leap like a stag.  Then will the tongue of the mute sing.  Those the Lord has ransomed will return and enter Zion singing crowned with everlasting joy; they will be with joy and gladness.  Sorrow and mourning will flee.”

It is wonderful to read these words promising what will happen after we have shed this mortal suit.

Many of you are familiar with the passage that Mary quoted in her article, “Are you the one who is to come, or should we look for another?”  Jesus said to them in reply, “Go and tell John what you hear and see: the blind regain their sight, the lame walk…the dead are raised, the poor have the good news proclaimed to them, and blessed is the one who takes no offense in me.”

Many take this passage to mean that Jesus is saying he is “The One.”  I don’t discount this meaning

For me, this passage has an additional meaning, now and for everyone with ears to hear.  The one who is blessed is anyone who realizes that their true self is their spiritual self and who acts accordingly:  walk their spiritual path and nourish their spiritual needs. The truth is good news to the poor, to understand that all material gains are not real, that they will pass away in a short time, but you can gather what makes you spiritually rich, and that can last for an eternity.  The dead are raised are those who were dead to their spiritual self.  For the lame, no legs are required to walk with your true body — your spiritual self.  The blind can come to see the spiritual truth.

It is hard for people to understand about blessings.  A huge loss, psychological and physical pain, such things are not blessings within themselves.  But if you can understand that what we see around us, this mortal world is only a fraction or perhaps a distorted perception of the real world.  We are all spiritual beings, connected in ways that are hard for us to conceive. We are busy ants carrying crumbs. Any good or bad intention you have starts crafting a design that you do not see until it comes back into this world and affects you and others in ways you may or may not expect.

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Posted in Bhakti, Dying, Living with Illness | 4 Comments »

Words

2010-12-26

I am thinking about the importance of words.  I think most people take words for granted.

A friend of mine sent me an article by Tony Judt.  He wrote about the importance of words in this family when he was growing up, about the times in the beginning of the 1950s when speaking proper English was very important.  In college he was a master with words, but he didn’t really understand the importance of silence.

Over many years and during my illness I have learned the importance of silence.

A few weeks ago I went to see a play based on The Screwtape Letters by C. S. Lewis.  C. S. Lewis is one of my favorite authors and I will be talking more about his work in future.   In one passage Screwtape is advising his nephew Wormwood, a fledgling demonic tempter on Earth.  He suggests that Wormwood try to fill the human’s head that he is trying to corrupt with noise.  For if our heads are constantly filled with noise of people speaking, trains running, babies crying and dogs barking, we will never know the peace of silence and the knowledge that may come from within.

Tony says for him rhetorical flexibility allows for a certain feigned closeness, conveying proximity while maintaining distance. I see this in people who don’t walk the talk. I also agree in matters of language, outsiders are frequently deceived.

I remember that when I was the director of a health information department in a hospital, the director of human relations often sent down recruits who he believed were just right for the position I had requested.  He often based his decision on the person’s flair for words, what we call in Texas a bullshit artist.

I have always thought of language as a gift. When I was young I was too shy to speak so I wrote down my thoughts.   As I became older, I realized that many times people only listened to part of what I was saying to them because they felt like they needed to think about what they were going to say in reply. First to test this theory, then out of frustration that I was not being listened to, I would often stop in mid sentence.  Most people did not notice.  Has a pause/silence become so uncomfortable?

When Selch and I started dating, I would stop in mid-sentence and he would say “Yes, continue?”  I was somewhat flabbergasted realizing I had fallen into this rather lazy way of speaking.  Fortunately, I received enough prompting from him and was even able to finish my sentence even though it might mean talking over someone’s premature response.

As Tony wrote in his article many people talk the abbreviated language of Facebook and Twitter and texting.  It is still confusing to me because words used different ways can have so many ambiguous meanings.  I communicate on Second Life quite a bit.  Everyone has forgotten how to spell or they just don’t care about spelling anymore.  I will be texting with someone and am later shocked that I am talking to a philosophy teacher with a PhD.

We have voice on Second Life now which adds an interesting depth to conversations on Second Life.  If a person is speaking in text, it is easy to hide whether you are male or female.  Voice morphing software is available but they do sound like a male trying to impersonate a female or a female trying to impersonate a male

What I love about voice on Second Life is I have the opportunity to really speak with people from other countries.  Yes, there are some language barriers perhaps made worse by not being able to actually see the person but we usually seem to work it out and are for the better for having the experience.

I, like Tony when he wrote this article, am in the grip of a neurological disorder.  He says what I think so well that “the view from inside is as rich as ever.”  Fortunately, I am still able to speak fluently at times.  What you do not know is often it is a struggle to capture the words in my head and speak them out of my mouth or type them onto paper.

So many of my characters are suffering from locked-in syndrome.  For awhile they were all yelling at me, wanting me to tell their stories.  That is the way it has always worked.  I dictate the drama they play in my head.

In most people there is a control mechanism in their heads that they take for granted.  It is like a gate you walk through to get to the subway.  It helps order tasks and projects so that you aren’t constantly overwhelmed.

The reason it is hard for me to say or write my stories is the same reason I am unable to do activities of daily living even though I appear to be capable of doing these tasks which I’ve done all of my life.

I feel like there are so many tasks and I can’t do all of them at once, so I become paralyzed with fear and eventually I just give up.  The doctors term this apathy because that is what appears to be to them.  It is a much more complicated than that.

Now, my characters and ideas aren’t screaming at me.  They haven’t left me.  I spend much more time in silence now, contemplating, using Theeravada Buddhist mindfulness practices and saying  prayers.  This has opened up a world to me that many people cannot see because they are so busy living their lives and caught up in mortality, and noise.

I am not through using my words.  Selch is by my side, my life partner, helping me to pull expressions out that use to flow freely.

As Tony wrote, especially now in this world today, good honest communication is how we sustain and grow and solve the problems we are having in this country and in the world.  We were given the freedom of speech by God.  It is a gift that can be taken away.  Please use it wisely for ourselves and our future generations.

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Posted in communicating, FTD, Living with Illness, Second Life | 2 Comments »

Since I’ve been away…

2010-12-05

I am very happy to be here once again posting to my blog.   I have missed being able to share my thoughts, feelings and information with you.

Unfortunately I have been unable to do even a little writing because of health problems.  First, I had a deep venous thrombosis (DVT) in my left leg. I was admitted to the hospital and put on a higher dose of anticoagulant medication.  I am still having pain sometimes and that leg.  We’ve switched insurance companies lately (my husband had to change his job to get better insurance that would pay for my meds) and it is been a struggle to get them to pay for some of my expensive medications.  I will talk more about that in an upcoming blog.

The most difficult thing that I’ve had to deal with is that my FTD is becoming worse and is affecting my ability to write.  I have so many stories in my head and so much that I want to share with people. My characters are screaming to have their stories told.  In the literature for FTD and one of the symptoms that doctors explain that may happen with FTD is apathy.

Before we knew I was diagnosed with FTD, Selch began to notice that I would not take my pain medicine even though I was in a tremendous amount of pain.  I did not seem to care about bathing even though I used to take two  showers a day, and that I would no longer pay the bills.

I think for me being labeled apathetic is not exactly the right term.  The problem is that when I am faced with the task, I become overwhelmed.  My mind becomes flooded with each detail of the task that I must do and I become paralyzed with fear to the point I am unable to take any action.  Then as a coping mechanism, I try to put out of my mind doing the task at all.

Now I am devastated that my FTD has started affecting my writing again.  I have so much information and so many stories that I want to share with everyone, but right now I feel like most of it is locked in my brain.  It is as if there were a large crowd of people who are trapped in a room but the control mechanism that used to be there to let them  file out in an orderly fashion is not working anymore.

Selch, as always my knight in shining armor, is working with me to help me to be able to write again.  Right now I’m using Dragon Naturally Speaking.  It is hard for the thoughts that come from my brain to go to my mouth instead of my fingers on the keyboard.

In the near future, I hope to once again be sharing my thoughts and feelings with you. Take care everyone, until you hear from me again.

Soulfulsilkee

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Posted in FTD, Health care issues, Living with Illness | 2 Comments »

Gifts from a terrible disease

2010-08-17

Sorry I haven’t been able to post lately.  I’ve been skirmishing with my cornucopia of miasms and the time I’ve had left has been spent resting between rounds of the battle.

I have talked before about gifts that come from illness, such as strength and compassion, but these two gifts that I want to mention are not happenings usually associated with FTD.

The first is unexpectedly increased creativity in some people who have FTD.  A passage from a University of California website says “In our clinic at the Memory and Aging Center, we see people who lose certain abilities, like language, while gaining new ones, like musicality and artistic expression. We have met individuals, particularly those with semantic dementia, who never created art before becoming ill and are now making wonderful, intriguing artwork. One explanation for this phenomenon is that healthier parts of the brain compensate for the areas that are no longer working. Therefore, visual expressions such as a drawing, painting or sculpture bloom as the person loses their capability for verbal language.”

I am a writer and I had a big problem with writer’s block that lasted for years.  A few years ago the dam burst and my mind was filled with many stories.  My characters have always “talked” to me since then.   I am the person who dictates what they tell me, and I do a bit of maintenance work on their pages.

Now, my characters constantly cut in line to try to be the first to tell their story.  They are a rowdy crowd and sometimes I have to blow the whistle and say, “Let’s have some order here. I will get to all of you eventually.”  I don’t think they believe me.  They know my time is limited so they continue their bad behavior.  When I am able, I try to dictate some of their words and I also have a “talk box” for each character who wants to tell me their story.  I can type or use Dragon Speak to get their words out.  Of course, it is only a temporary measure.  When I am too ill to keep up the system, the mob is back.  As of late, I think they have become more understanding.  During this last spell of illness, they entertained me by telling stories one by one.

The other gift  that I have recently received from FTD  I discovered recently.  I have no idea if others with FTD have experienced this with the illness.  Recently, we went to the Smithsonian Museum of Natural History.

Selch wheeled me into the room of stones and quartz.  I began to feel vibrations on different levels.  I told him about my experiences and he positioned me so I could touch different stones.  Each stone had different vibrations and the vibrations sounded like music.  As he pushed my chair further into the rooms, I could hear a symphony of different vibrations.  The colors, the “music” and the vibrations together were an amazing experience.

I wished that I could  touch all the different stones that were behind the glass.  Of all the stones I believe Amethyst was most pleasing to my senses.

Unfortunately, when we came into the room where diamonds were exhibited, there was a crowd of people.  My experience was somewhat muted.  Perhaps too many people block the flow of energy.  This experience is so new to me.

The last stones I encountered were meteors from space, mars, etc.  They also had their own vibrations and tones.  Generally their vibrations had a deeper resonance.

I had read about the power of stones and crystals but never really paid much attention to it.  We have a friend who is a jeweler and the last time I went to his house and he brought out different stones and gems, I did notice an attraction to some of them and I was also delighted to spend a few hours digging through different pieces of gold looking for real treasure (meaning higher quality gold.)  By the end of the day, I found myself really interested in gemology and he gave me a book to take home.

I tried to read the book but after I was away from the stones I lost interest.  Also my spiritual teacher had a collection of different stones and gems.  He talked about their life force and healing properties.

If any of you that have FTD (or another neurodegenerative disorder) and you have experienced an experience of increased creativity or this phenomena with stones and gems, please share your story with me.   Or if you are a loved one of someone with these disorders and have witnessed it.

Also maybe you or your caregiver might want to try or assist you with many creative activities to see if they appeal to you.  I read about a man who had no creative talent who has FTD.  He is now creating beautiful sculptures.  I am not saying that we all will be able to do that but perhaps you or your loved one might gain some pleasure by trying different creative things.

I wrote in a past note that I had lost my ability to play the piano with my left hand or recognize notes on the bass cleft.  We went to the music store recently and I did remember where to place my left hand on the keys.  It is a start and after we are more settled, I am going to purchase a keyboard and see if I am able to resurrect some of my musical ability.

Never give up. We are traveling through the dark woods right now, but on the other side we will continue our journey to a better place.

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Posted in FTD, Living with Illness, Uncategorized | 3 Comments »

Loss, Part 1

2010-07-19

I apologize that I haven’t been able to post here for awhile.  Diseases and sundry disasters have intervened.  But, I am back and looking forward to sharing my thoughts and information with you.

Loss is something everyone experiences at some time in their life.   All will experience losing someone or something, and the greater the value, the keener the sense of loss.

When I talk about loss with people I often bring up a very famous figure, Job.  Here is a good, happy and wealthy man who  lost almost everything in this world — wealth, family, then health.  Whether you believe Job actually existed or not, the biblical story of Job is a very good account of how a person deals with loss.  Even Jung devoted a small book to the problems implied by Job’s losses, titled, Answer to Job.

I’m not going to debate in this post whether there is a God and why God lets things happen to good people.  I may have some further comments on this after re-reading C. S. Lewis’s The Problem of Pain.  ( Or rather listening to it as an audio book, as I can no longer read the paper pages of books and magazines.)

I want to point out Job as an example of a man who lost everything that he could possibly lose — save only his life — and still had faith that there was a higher power, that he was not alone in his suffering and that as long he lived there was some purpose for his life.

I have lost so much in my life. Those of you who know me understand that my life has been full of suffering and loss.  I have a PhD in loss (Pain, Hardship and Disaster).  Even my life is being taken.

When we suffer loss we may have some forewarning or we may not.

Even if we know the loss is coming, as much as we try to prepare ourselves, we are often surprised at the effects on our lives.

For me, there came a time when I could no longer drive.  Selch and I had talked about some problems I was having with loss of attention while driving.   I scraped a toll booth, and a guard post in a filling station.  When my son was with me, he warned me a couple of times that I was swerving off the road, but I didn’t recall it, so I thought he was exaggerating.  One day, Selch followed me to get the car fixed and told me that I was swerving in and out of my lane on the road and it was too much of a danger for me to drive.

I imagined when I was younger that if I ever wasn’t able to drive, I would be totally devastated.   I think because I had already had so many other losses and I had been driving gradually less and less, I was better able to cope with the loss than someone who was still working or who had small children.

Still, I had regrets. We lived on the East Coast and I wished I had taken more of the driving trips I loved to do.

From the time I got my license as a teenager, the ability to drive has meant freedom.  My mother would take away my car keys to punish me because she knew that it really tortured me, to not have the freedom to get out of the house, get into the car and go somewhere, or nowhere, just so long as I was driving.

For many years, even after I had children, if I was troubled, depressed or mad, I would jump in the car and drive down the highway for several miles and drive back.   I imagined if I had been born a few hundred years ago, I would have gotten up in the middle of the night and run through the forest or the fields.  (Also,  I probably would have had a shorter life span, because even Little Red Riding Hood knows it is dangerous to walk through the forest at night!)

Now, that I am confined to my recliner most of the time and getting out is a major production — with a wheel chair and making sure that I bring a bag with all my medications — I rarely think of driving.  Still, some nights I wake up at night searching for my keys until I realize I can no longer get up and go.

For me, there have been losses I haven’t expected.  I had been having abdominal pain that had been ongoing since the last trimester of my last pregnancy and had been getting progressively worse.  I saw an OB/GYN who told me I probably had abdominal adhesions.  They could be pulling on sensitive tissues internally, causing the pain, without any abnormal lab results.

She told me that she would do a laproscopy of the abdomen, a fairly simple day surgery procedure in which she would make a small cut and insert a tube in my abdomen so she was able to see the adhesions and cut them out.  Selch took me to the hospital on Valentine’s Day in 1997.

I had worked in the medical field for several years and  had day surgery before.  I was first aware that something wasn’t right when I woke up and they were pulling a tube out through my mouth.  Even though I was very groggy, I knew that I must have had general anesthesia.  I panicked inside. What had gone wrong?

The doctor told us that there had been more adhesions than she thought so she had converted my surgery to a laparotomy.  I wondered why she did a laparotomy without having me consent to it first.  From the moment I came out of anesthesia, I had severe pain in the right side of my abdomen to my back and down to my thigh.  I didn’t know then that the pain would never go away.  She had damaged three major abdominal nerves, and surrounding soft tissue, causing Reflex Sympathetic Dystrophy.

I couldn’t walk correctly for the first two weeks and the doctor told me it would resolve itself.  The walking got better but the pain was unbearable.  I had taken a two week leave of absence from my job.  I had just started a new job.  I tried to go back a few times to work but could not stay for more than a couple of hours.  My pain was too great.  I had to resign from work.  Selch, who was my boyfriend at the time, offered to let me stay at his house to recuperate.  I had to let my apartment go.  We thought it was temporary and that I would be able to get back up on my feet and get a job eventually.  I was never able to go back to work.

I had been employed full time since I was 21, and had been the primary bread winner after my children were born.  I worked my way up to being a director of a department at a young age.  After I gave birth to my daughter,  I worked for a company in which I assisted doctors in reviewing medical records for quality, then I became a consultant in a health information department.  I had been through a lot of hardships already and had had two failed marriages, but I always thought everything would be okay because I was able to support myself and my children.  Not having that security was a huge loss.  From then on, I was dependent on someone else.

I often  don’t realize on the last day that I am able to do something, that I will never do it again.

When I left my job the last day that I worked in March 1997, I did not know that I would never work outside my home again.  I had lost relationships and things before this happened, but I always believed that no matter what I would be able to support myself and my children. I did not make a great deal of money but I worked in the medical field and there was always a need for the type of work I did. Originally, I planned to stay with Selch for two weeks while I was recovering.  I never left.

I lost the sense of security and the independence that I would be able to take care of myself and my kids no matter what happened. And losses have a tendency to pile up on top of each other.   I had received a lot of emotional support over the years from a network of close friends at work. They continued on with their busy working lives.  We met a few more times for lunch and after work, but I would repeatedly have to cancel plans because I was not feeling well.  My friends stopped asking me to go out.

People started feeling uncomfortable around me. They didn’t know quite what to say about my pain and I didn’t want to talk about it much fearing that I was imposing on them. The other problem was that I wasn’t in the working world anymore. I wasn’t part of the team, I’d lost track of the players.

Finally, one of my last work friends flew the coop. I called her the Buzzard of Happiness, because when she talked about her life it all seemed so hopeless, but yet she had been a good solid friend who had a quirky sense of humor.

The last time I talked to her was when I had to cancel a movie date with her for the third time. She told me she could no longer be my friend, her life was depressed enough without having to think about my situation. Our outings had been one of the bright spots in her life and she didn’t want me to become another person she dreaded seeing.

My feelings were hurt but I appreciated her honesty. She was able to say what many are not able to.

We discovered that my pain would never go away.  My RSD might have been treated effectively, had it been diagnosed sooner.

Many of us have some losses that are so profound and hurt so badly that they are difficult to share. I have had a few losses that bring tears to my eyes when I even start to think of them.  You know these losses that leave you so brokenhearted that you build a grave someplace within yourself, a quiet dark space where you can go to mourn.

I spent most of my day today trying to explain the loss of my children to you.  When I started typing the words, I   remembered again the one normal weekend that became a catalyst of change for me and my children.  By the time I finished, tears were dripping down my cheeks and snot was flowing out of my nose.  I am not an attractive crier.  My eyes are red-ringed, my nose is as red the honker on my coach’s face after he had been on a bender, and  my head feels like the dead weight of my sorrow has crashed down upon it.

I can’t share that story with you today because someone with piercing words  recently sliced open the tough scab over my tender wound.  Yes, I am bleeding again, but I am not as raw as I once was.  I have developed tools over time to staunch the flow.  So I will save that story in draft for another day.

When one domino falls, the others behind it usually fall in an orderly fashion.  That isn’t how it is when you are riding the train of life.  One break in a relationship, a health crisis, even what might begin as a small lapse in judgement can cause a cascade of collisions on down the road.  Many continue on life’s journey but they are  riding a on a crooked rail.  The heart becomes a wounded member that limps between the strong beats of life.

Posted in Bhakti, Chronic Pain, Dying, FTD, Living with Illness | 1 Comment »

For Those Who Are Not Heard, Part 2

2010-07-04

Doctors often do not listen to patients who have FTD, and will tell them that they do not have FTD.  They know so little about the wide variety of symptoms associated with FTD disorders, and how these symptoms and underlying diseases overlap.  This same phenomenon extends to the rest of the medical community:  those of us with illnesses, and even our caregivers, are not heard.

There is still much unknown about FTD and related disorders.  It is only this year that the leading researchers are starting to agree on which signs to look at and the basic measurements that they need to take, to enable them to start sharing and comparing the knowledge and data that they have each been collecting separately.

Further down the research food chain, doctors grab the more common stereotypes, and apply those typical symptoms as inflexible requirements for a diagnosis.  Many people who have FTD do not show “typical symptoms”, and so these doctors refuse to order MRI’s and PET scans, or the neuropsychological testing, that could confirm these presenile neurodegenative diseases in the early stages.  I was told by one self-proclaimed expert that if you don’t have emotional blunting, you can’t have FTD, despite physical evidence on an MRI of unilateral frontotemporal atrophy.

There is no cure for FTD and related disorders but neuroprotective medications do help to slow the damage from these diseases.  There are certain medications that people with these disorders that should not be on, certain medications that make their symptoms worse.

I understand that doctors are taught to sound confident and authoritative in talking to patients.  The idea is that the patient will be comforted to feel that the doctor knows his stuff.  The problem is that a doctor’s confidence in his knowledge needs to be based on fact, not fancy.  Missing a diagnosis of FTD adds years of uncertainty and unnecessary misery to patients and their families, over and above the depredations of the diseases.  And there are few things as disheartening to me as the aggressive ignorance of a doctor confidently and authoritatively asserting falsehoods.

Would it really be so hard just to listen?  To preserve some modicum of scientific humility?

Or maybe this humility is the means by which we can distinguish between the truly knowledgeable researchers and the lesser lights.

My words about this disease that is taking my life — robbing me of my grandchildren, and the world of the art that I want to create — come straight from my heart.  But there are so few who have the heart to listen.

A long time ago in December, I went to a bar, to listen to the words of a poet who was blind and hard of hearing.  He had another poet recite his poems.  All of his friends had promised to be there to listen to him.  This was a major event in his life.  He had never before revealed his poetry, what was in his heart, to anyone.

So the lights were dimmed and a blue light enveloped an attractive woman who sat next to the poet.  Her voice was like velvet and his simple poems about love flowed out of her mouth.   I was drawn into the poetry, my heart beating with the rhythm of his verse.

Then I felt a cold breeze periodically slip past my shoulders.  I looked around the room.  People were quietly getting up from their seats, stealing out like thieves into the night, slowing robbing the room of its humanity.  Then I remembered that another friend of ours, a poet who read his poetry every week at this time was reading his work  just down the street.  This section of town was known for the bars where poets read and people listened to live music.

After fifteen minutes, there were only five people there, the audience was the manager of the bar, a new female friend of the poet’s and me.  The female poet kept reading his poems and occasionally, she would address “the crowd.”  My poet friend continued to grin from ear to ear.  I wondered if he had known that anyone had left.  Then I thought perhaps he was better off not knowing.

I knew that if I walked down the street, most of the missing audience would be there.  I imagined myself chiding them for their transgression.  But, I decided, why waste my time in a verbal attack on fools, when a man was sharing his soul with us here.

About ten minutes before the session ended, his “friends” began to file back in as quietly as they had left.  Then she of the velvet voice said, “Before I read a final poem, I want to thank all of Bill’s friends for coming here tonight to listen to Bill’s poetry.  She rattled off their names one by one and they each squirmed a little in their seats or made some facial gesture, to acknowledged in a social way that they had been caught.

Then the poem was over and they all gathered around him to tell him how his poetry had touched their hearts.  I parted quickly not wanting to hear their gushing lies.

Alas for us who suffer these deadly diseases, there is no narrator in this life to name the names of those who will not hear.

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Posted in Bhakti, FTD, Living with Illness, Medical Mistakes, Physicians, Treatment | 2 Comments »

For Those Who Are Not Heard, Part 1

2010-05-23

The other day, I was trying to make a referral and couldn’t remember how to spell my neurologist’s first name.  I asked Selch.  It’s not at all a common name.  He did a quick search on what he thought her name was just to check.   He found a page on the internet that matched the name, but didn’t look quite right.  He started to read.  The woman was a doctor and a PhD, but was recently retired from the Texas A&M College of Medicine as a professor of surgery, not a neurologist.  She was writing about two epiphanies that she had experienced in her life.  I noticed he got a little misty as he read.

Her first epiphany came in response to a prayer.  She was called to be an ordinary Christian woman.  A bhakta.  [Note:  In ancient India, the followers of Vishu marked their foreheads with three vertical lines, and the followers of Shiva, with three horizontal lines.  The term bhakta means “one marked by striations”, and came to be used as a collective term for those who devote their lives to God, of whatever persuasion, whichever direction the lines are drawn.]

Her second epiphany struck closer to home.  Her mother became ill, and the illness damaged her brain severely.  It left her “locked in” with no means of communication.

Her cerebellum–the center of coordination–had been destroyed. When this happens, there is no way to speak, no way to signal. Try to signal and your hands fly wildly like startled birds. Try to speak and a scream comes out.

Part of the second epiphany concerned her mother.  God told her, “…I need someone with the resourcefulness to reach this woman trapped in a body that doesn’t respond.”  Many would have said that her mother was gone, and put her into a home.  That way, she wouldn’t have to agonize about the effects on her two young boys and her toddler, Beth.  It would certainly be the easy way out.  Beth would stand for hours by the wheelchair, looking at her grandmother.

Instead, she persevered and worked with her mother, eventually finding a way that her mother could respond in ways that meant Yes or No.  Her mother was still there.  They found ways to communicate. Her mother was not gone.   Selch puts it in computer terms:  The problem was with the interface.

I can relate to little Beth because I was also called Beth when I was growing up.  I remember also standing by my grandmother’s chair.  She had severe Obsessive Compulsive Disorder, but we were very close.  My doctor and I talked about how we had both been called Beth growing up.

Then it all became clear to me.  The little Beth in the story is my neurologist.

This story is important to all of us who are patients and caregivers.  We wonder sometimes, “Is my loved one still there?  Should I keep trying?  Maybe it is time to give up.”  I read many messages from caregivers who wonder if their loved one is still there, should they keep trying to communicate.  I always say, Yes.

Some people, frequently doctors or scientists, will try to “objectively” define a person as a collection of behaviors.  If the behaviors change drastically, they say the person is no longer there, that this is a different person, as they no longer act in the same way they used to.  They will frequently tell the family, “Do what you think is best for the remaining members of your family.  The person you loved is no longer there.”  What would have happened to little Beth’s grandmother, if her mother had taken this view?

I am more than a collection of behaviors.  Christians believe that there is an immortal soul, and that this physical body is only temporary.  Buddhists and Hindus also believe that this body is temporary, that we are not simply the body, but will be reborn or reincarnated.  There is a problem with my body, my brain has a disease that will cause my body to die.  It is not a problem with me.  It is a problem with my interface to this world.

When my disease progresses far enough, I will no longer be able to communicate in words.  Selch will find new ways.  He knows I will still be there, loving and caring and suffering, on the other side of a broken and deteriorating interface.

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Posted in Bhakti, FTD, Living with Illness, Physicians | 2 Comments »

The Light and the Tree

2010-05-06

A  few nights ago, I was looking out of a window and saw a street light that was next to a tree casting an eerie artificial light on the tree’s leaves.

For a few minutes, I was transported back to a night when my 16-year-old self was staring at a light shining on a tree outside of the window of my great Aunt Jewel’s house which was located in a small town in Texas

I had just received my driver’s license a few weeks before.  Ever since the movie, American Graffiti, many fad’s had been revived from the 50’s, one of them being “cruising.”  Early in the evening, I had been cruising down main street in my yellow Maverick with my younger brother who was a reluctant passenger.  We had been going to visit my grandparents at least one weekend a month ever since I could remember.  My cousins were much older than we were and there wasn’t much “treasure” left up in the old closet upstairs at our grandparent’s house  for us to discover.   I was thrilled to be able for the first time to  drive up and down Main street, windows down, radio playing “We Are the Champions” and local boys honking their horns and shouting, “Baby come take a ride with me.”

When I was looking at that light many years ago, I remembered at that moment feeling excited that a new world of possibilities was opening up for me and also secure in an environment of extended family that wrapped their  loving arms around me.

Then I came back to myself as I am now  looking at the light next to the tree.  I thought about my grandparents, my great-aunt who passed out of this world years ago.  I began sinking into constant pain and and dwelling in disappointment that my grandchildren will never be coming to “Grandma’s house for the weekend.  I  lived in a world where I had lost much.  Before I feel  down any further in the well of despair, I stretched my back and lifted up my head and whispered a short prayer.

My mind flooded with many life  lessons  that have resulted in strength,understanding and compassion.  I realized I do have in front of me a world of possibilities and ahead lies the preparation for shedding this broken shell. I will continue my journey  with my true identity, that part of us that always will be  Imagine those possibilities  and as Captain James T. Kirk, Starship Enterprise, once said, “To infinity and beyond.

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Posted in Chronic Pain, Dying, Living with Illness, Uncategorized | 1 Comment »

Living with FTD: Updates on FTD

2010-04-27

First I want to discuss the spring newsletter of the AFTD.  Go here to receive the spring newsletter online.

During the meeting in Miami  discussed in the AFTD newsletter, they mention two proposals, having a national patient registry and a national data base.  I think both of these are key projects that will spread information about FTD to those who need it.  The database hopefully will be ready for piloting in Fall 2010.

I agree with the steps for AFTD strategic planning.  I hope that they will have enough support staff and volunteers to educate the medical community on a widespread basis about  FTD. Perhaps there will be some doctors/nurse practitioners/physician’s assistants that are willing and eager to learn about FTD?  I went to a Woodstock Sim on Second Life that was up above the clouds.  Maybe that is where my head is right now.  Most neurologists do not know anything about FTD and even some FTD specialists do not understand that there is a wide variance of symptoms in FTD patients and patients often have other related neurodengenerative disorders in addition to FTD.

Dr. Boeve was involved in the Miami  meeting mentioned in the FTD newsletter.  My FTD doctor is Argye Hillis.  When I spoke to her earlier in the month,  she told me that she, Dr. Boeve and other FTD specialists met at  last  year’s May meeting in Ft. Worth, Texas for FTD caregivers.  They are making plans to form a group of FTD specialists who will meet together on a regular basis to exchange information and standardize practices of testing and treating people with FTD.  Dr. Boeve and some of these plans are mentioned in the newsletter.

There is another caregiver’s conference in May at Ft. Worth.  Several of us have been talking about the need for FTD sufferers who are still able to communicate and have insight into their disease to have a discussion or panel at these conferences for FTD.  We are very grateful for the support that these conferences provide our loved ones.  We as FTD patients would also like to be included into these activities not only for our own well-being but to provide information to caregivers from the aspect of a person with FTD.

Myself and others I know with FTD  are looking into being able to speak at the International conference.  I encourage as many people with FTD who are able to attend these conferences and let people in the medical community and caregivers know that some of us with FTD have much insight into our disease and are willing to share.  If anyone can help us in our endeavors to speak as FTD patients at seminars, conventions or web based activities please contact me.

Susan Grant will be having a get together in Colorado in May to celebrate the finish of her film Planning for Hope. I don’t have the details on hand but I will provide them later.

Going back to the FTD Newsletter, Dr. Mackenzie’s statement  that virtually all pathological forms of FTD can now be assigned to one of three major molecular categories is good progress towards unlocking the keys of the nature of the beast.

The genome study is exciting news for people who have FTD that runs in their families.  I know a few people who have heredity based FTD.   It is bad enough to have one member of a family have FTD but even worse when multiple members have FTD.  Instead of multiple family members bringing some clarity and connection with a family it often leads to even more denial and disharmony.  Siblings or parents of someone who have FTD that also have FTD are often in denial about their own illness ( a common symptom of FTD) and this makes it that much harder for the person with FTD who understands about the disease to make progress towards understanding and unity.

There has been exciting news about the drug Davunetide  owned by Allon Therapeutics.  Early clinical trials show promise in treating FTD.

Frontier Dementia Research Group is doing research in frontotemporal dementia.  See this website for information about their studies and publications. They also have caregiver centered studies, carer support and research study information.

That’s all for now.  I will continue to let you know more as I receive updates.

May there be peace that guides the planets and love that steers the stars ………..

Posted in FTD, Living with Illness | 2 Comments »

Updates on Pain

2010-04-26

Hi Everyone,

I have had a lot going on and I wasn’t able to post last month but I am back and hope to write three posts this week.  Most of you don’t know I like to visit second life now and again, lately it has been again and again lol.  Right now, I am in a virtual world at a writer’s camp out site. Nothing like writing in the woods.  Today they are having an all day writer’s marathon.  I don’t think I will be able to stay for eight hours but I hope to use the time to get out these posts.  Anyone who is on Second Life, my avatar’s name is Eppie Shoreman.  Any of you who are on SL or plan to be on SL, there is a support group for chronic pain at “The Centering Place” on Second Life.  Contact me for details.

Now I am going to give you some updates on pain.  I’ve been meeting many people in the last few months who have other illnesses and also have developed chronic pain disorders.  Many of them are suffering greatly because their doctors do not know how to treat their pain.  I encourage all of them to see a pain management specialist.  Unfortunately, as many of us know, even seeing a specialist is no guarantee that your pain will be controlled.

There is some new information in the American Pain Foundation’s Spring Newsletter.  For those of you who are interested in Occupational Therapy there is an article written by an Occupational Therapist.

In “Health Decision Putting Your Best Foot Forward,” the author talks about challenging the decision that the doctor knows best.  Most of us who have chronic pain disorders have found ourselves in the difficult position, should I listen to this doctor and go quietly out of his or her office without adequate support for pain control or should I speak up for ourselves and try to get the medication and therapies I deserve?

Getting adequate pain relief unfortunately often  means seeing several doctors until you find one that will really listen to you and agree to be part of your team in helping you achieve good pain control.

I have found that bringing Selch to my appointments has been a really big help.  Having someone go with you to your doctor’s appointment who is knowledgable about your condition and is willing to stand up for your rights goes along way in helping you to find  health care professionals that will help you with your pain.

If you don’t have a friend or a relative who can fill this role, I suggest that you check out local pain support groups in your area and see if you can find someone in the group who is willing to be a “patient advocate” for you.  If you can’t find someone locally search for support services available in pain foundations and also visit different pain support groups on the Internet.  Post that you are in need of someone in your are to act as a “pain advocate” for you.  You may not find someone right away but I’ve found that when I am looking for support, persistance matters.  If you are in too much pain, ask a relative or friend to do this for you.

I cannot stress how important it is for anyone with a chronic pain disorder to get the help they need to achieve good pain control.  Any of you that have other ideas and experience to share regarding finding help for pain control, feel free to reply to this blog post.

Karen Richards writes some interesting articles on pain.  See “Growing Pains, a Predictor of Fibromyalgia,” She refers to an article in Reuters and talks about misconceptions about growing pains and how growing pains may be an early indicator of fibromyalgia.

Another very interesting article by Karen is “War on Drugs Has Ended – What Does This Mean for Pain Patients?” If you have read my blog, you know that I have posted more than once about the “War on Drugs.” Karen writes, ” In May 2009, nearly four decades later, Gil Kerlikowske, the new director of the White House Office of National Drug Control Policy (ONDCP), declared the war on drugs to be over.”  This guy must not be living on the same planet as those of us with chronic pain disorders.

Health care providers and even pain management specialists in growing numbers are refusing to give people who have chronic pain the narcotics they need to function day-to-day in their lives because of past DEA actions, pending regulations and the constant media exposure of the continuing War on Drugs.  Totemism regarding narcotics is still prevalent.  There are still so many people saying that we need to get rid of these evil narcotics that are destroying so many lives.  Eliminating prescription narcotics will do nothing to stop people from recreationally using narcotics.  They will just go to another readily available source to get their drugs.  Pain patients are left without adequate pain control.  When will the media and the government start caring about the millions of people in the world who are suffering from chronic pain?

About the ONDCP’s educational efforts regarding the needs of chronic pain patients, I am afraid it is too little too late.

The Pain Monitor from the APF has some interesting info for people with chronic pain. It has news information about different pain topics as well as resources for chronic pain patients.

These are some pain updates for April.  As always, I hope to be your faithful correspondent.

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Posted in American Pain Foundation, Chronic Pain, consumer driven health care movemnet, FDA, Fibromyalgia, governmental regulations, Health care issues, Living with Illness, Medical System, Opioid therapy, Pain Management, pain management specialist, Physicians, Politics, Second Life, Treatment, WarOnDrugs | 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 »

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 »

Promising treatment for CRPS/RSD

2010-02-08

I just read a post on Chronic Pain Connection about Promising treatment for CRPS/RSD.

I have suspected for a long time that my CRPS and other illnesses might be linked to an immune disorder.  Another interesting thing for me is that I was treated with IVIG which is discussed in the study during my childhood because I had severe asthma and recurrent pneumonia.  Another layer of the onion is peeling.

Also see Researchers Discover new treatment for Complex Regional Pain Syndrome.

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Posted in Chronic Pain, Living with Illness, Pain Management, Treatment | 1 Comment »

Anti-depressants may not work

2010-02-02

I just read an article in Newsweek that says antidepressants may be no more effective than placebos. I have been on several antidepressants.  My relationship with antidepressants started when I was having moderate situational depression.  The doctor tried putting me on three or four antidepressants but none of them helped and I had the additional burden of side effects along with depression.

The only thing that helped my depression was getting out of the situation.  But, I have talked to many people who swear that antidepressants help them so I’ve always thought if they work for them and they suffer no side effects then I wish them the best of luck.

After I developed symptoms that could not be explained, physicians that I saw always pushed antidepressants.  They told me they weren’t saying that everything was in my head and that anti-depressants actually had been shown to help my symptoms.

I gave them another go round.  Again, nothing but side effects.  So, I started refusing antidepressants.

Then, my doctor diagnosed me with complex regional pain syndrome.  He has a very scientific way of thinking and explained to me in a scientific manner why antidepressants work.  So once again I hopped on the horse.  This time my companion was Cymbalta.  For the first two weeks, I actually felt better.  I happened to be on vacation in No Where’s Ville, Pennsylvania when I had a severe anxiety reaction due to Cymbalta.  My physician advised that I immediately stopped taking it.

After that, I started doing some research of my own regarding side effects of antidepressants, reading some studies and reading  lots of testimony from other patients that  made me realize that antidepressants can have some major side effects, even suicidal ideation.

Since then, the only thing I have let my doctor prescribe in the anti-depressant category is Trazadone in a very small dose to help me sleep at bedtime.

I have been mostly focused on side effects of anti-depressants in recent years and haven’t paid that much attention as to whether they worked or not.  Many people said that they really work for them and who am I to judge?

I do remember reading a study that said the body adjusts quickly to change in serotonin levels.  I also read recently that serotonin levels are not the hallmark for depression that everyone has been thinking they are.

The article in Newsweek says that studies show that anti-depressants are no better than placebos.  I believe we all have the ability for self healing if we are able to have faith.  Perhaps there is something to the placebo effect and no one should be concerned or ashamed if it truly is a placebo effect.

I am  concerned  that when everyone starts reading this article , they might discount the placebo affect and perhaps not feel as well.  I suggest reading the writings of Edgar Cayce if you are open minded.  His abilities are an example of how the mind does have the power to heal.

I grew up in church where they told us that healing only came through Jesus.  Now I do believe that healing does come from God but the power to heal has been given to all of us.

Remember the passage in the Bible that said if you have the faith of a mustard seed you could move mountains.  I think so.

I once knew a man who had the “gift” of healing.  He knew this gift came from God and everyone has the potential ability to “heal.”  It is one of God’s gifts to humanity.

I cannot say whether antidepressants work for others or not.  In the article someone asked why would the FDA would approve antidepressants if they didn’t work?  The FDA has a huge political agenda and they are not always looking out for the best interest of the people.  See FDA REMS and the fact that they have blocked two new pain medications that might help chronic pain patients.

Please if you are on an anti-depressant, talk to your doctor before you decide to stop taking your medication.  If you get off antidepressants suddenly it can cause serious withdrawal symptoms that could be life threatening.

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Posted in Chronic Pain, errors in medical treatment, FDA, Health care issues, Living with Illness, Medical System, Opioid therapy, Pain Management, pain management specialist, Physicians, REMS, Treatment | Leave a Comment »

Long Term use of Opioids in people with chronic pain

2010-02-02

As you are aware if you have read about me and my posts, I have been taking narcotics for many years.  After much research and several discussions with my pain management specialist I am convinced that it is safe to use opioids in long term treatment for chronic pain.  An article in Medscape  says there is little risk of addiction from long term use in “select” chronic pain patients. Only (0.27%) of 2613 patients in the studies reviewed who received opioids for CNCP for at least 6 months reportedly developed an addiction to the medication.

The author also mentioned that many people withdrew from the study because lack of pain control and various side effects caused by the pain medication.  This is always a problem when treating chronic pain patients.  Multiple medications and combinations of medications and different dosages as well as route of administration may have to be considered before the patient starts receiving ongoing adequate relief.  Finding the right medication may be difficult in the beginning .  I know it was for me, but because I had exhausted all other avenues of treatment, I stuck with taking prescribed narcotics for pain management and my doctor and worked as a team to find the correct medications for me.

One concern for patients on long term opioid treatment is drug monitoring being done by many physicians. Relying on urine drug screening and testing for managing opioid-analgesic therapy in patients with chronic  pain causes unrecognized problems and challenges.

At least two small studies have found that physicians ordering urine drug screens to monitor patients on long-term opioid therapy typically are not proficient in interpreting the results according to the article about pitfalls of using urine screening tests.

While those who are for urine drug screening have a list of justifiable reasons for doing the tests,  testing results can be complicated and often misleading, leading to delays in patients receiving medications as well as problems in doctor/ patient relationships.  In a previous post I described my frustration about having to wait for a urine screening the entire afternoon in the doctor’s waiting room and I was only “discovered” to be still there when a nurse came to lock the front door at the end of the day.

The article explains many reasons why results of urine tests can be misinterpreted.  This may cause physicians to wrongly label a patient as a drug abuser and punish them by even closer monitoring or worse dismissal of the patient from the doctor’s care.  If the doctor receives positive test results all factors should be considered by reviewing the patient’s history and having a discussion with the patient before any drastic action is taken.  Remember a discharge of a patient by a pain management doctor is a black mark on the patient’s record which makes it difficult for the patient to find anyone else willing to treat their pain.

I read an article in Reuters that even legitimate usage of opioids can cause an overdose in patients. A study, published in the Annals of Internal Medicine was done by  researchers  who followed nearly 10,000 adults who had received at least three opioid prescriptions within 90 days to treat chronic pain.

Of these, 51 experienced at least one overdose, and six died as a result.  Reported studies such as  this one rarely discuss the specific circumstances of these overdoses, what other medications were taken and the co-morbid conditions that the patients might have.

The article states that “several million Americans now use opioids to relieve disabling chronic pain, and so even relatively small overdose rates could amount to thousands of overdoses every year.”  But in fact this does not happen.  Most patients who use opioids to relieve ongoing chronic pain are opioid tolerant which means their risk of overdosing on the narcotics is slim to none.

In the study, overdoses were particularly common among people who had a history of depression or substance abuse.  Remember the people who overdosed were a only a small number of people  in the study who took prescribed opioids.  A history of drug abuse or depression should be documented in the medical record and a physician should take this into an account when prescribing opioids.  This opens up another problem of lack of good historical information by the physician in the patient’s medical record.  I won’t further discuss that in this post as I have discussed the matter in other posts and probably will again in the future.

In “A Review Shows Opioids Relieve Chronic Pain With Little Addiction Risk,”  Meredith Noble, a senior research analyst at ECRI Institute, one of 14 evidence-based Practice Centers in the country under the U.S. Agency for Healthcare Research and Quality, and her colleagues reviewed the findings of 26 clinical studies comprising 4,893 participants of people who take prescribed narcotics on a long term basis.

They  wanted to look at studies  in which people who had chronic pain were treated  for six months or longer, given that chronic pain can go on for years. The review included studies of individuals on opioids for as long as 48 months.

In studies reporting abuse or addiction, only 7 out of 2613 patients reported that they took their medicine incorrectly or that they became addicted.

I agree with the results of the study, if patients are properly screened by history of problems of drug abuse or other complicating factors there is little risk of abuse or addiction.

In conclusion,  long term opioid treatment in chronic pain patients is safe with very little risk of overdose or abuse.






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What is missing in this picture?

2010-02-01

I felt like I just had to say something.  It has been annoying for the past few months.  In the last two days I have read an article providing information about FTD and information about a conference.  Both of them stated that the information/conference would be helpful for physicians, nurses, and caregivers.  Do you see something missing there? HELLO, I’m here.  I am a person who has FTD that can reason, communicate and has a great deal of insight into my illness.

Guess what?  There are others in this world like me.  It is frustrating to live in a world where most people don’t understand what you have and the people that do assume that everyone who has it is aggressive, apathetic to others, has extreme personality changes, etc.

Perhaps that will happen to me but there are variants of FTD which exist in which the person who has it does not become aggressive, apathetic to others and has extreme personality changes.

As I said in my last post.  FTD is underdiagnosed even in patients who have “typical” symptoms.  Most physicians who see patients don’t see people like me until they are in a later stage if at all because we do not have the “typical symptoms.”

It is a frustrating situation for every one.  I just want to let people know that there are people who have FTD that are actually posting messages, blogging, chatting, researching information about FTD and getting information from conferences.

One of them made a film, another one wrote and published a book.  Some of us are still here and making a difference in this world.

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Living with FTD-Frustration of Diagnosis and Support for FTD Patients

2010-01-29

I am going to be writing more posts on what it is like living with FTD in the near future.  This morning, I want to talk about a particular frustration that I share with some other people who have FTD as well as people whose loved ones have FTD.

The “typical” FTD patient according to most medical literature exhibits personality changes, “acting out behaviors”, denial and lack of insight about their illness.

In reality, symptoms of FTD can wildly vary among people who have the disease.  FTD is hard to diagnose because a person with FTD can show symptoms before actual brain damage shows up on an MRI or brain scan.

Even people who have typical symptoms often will be misdiagnosed as having psychiatric problems and spend valuable early years under the treatment of a psychiatrist and taking psych. meds that actually may make their FTD worse.

Most neurologists do not have the training to diagnose FTD.  People with FTD usually “pass” typical neurological examinations.  Thus, the neurologist tells the patient that he or she cannot find any neurological abnormality that explains their symptoms.

I have many FTD symptoms but as I mentioned above, I do not have the typical symptoms that doctors use to screen for FTD.  I’ve had unexplained neurological symptoms, anxiety, depression and increasing apathy towards activities of daily living for the last five years.

My husband and I went through Dante’s Medical Inferno trying to obtain diagnoses for my other illnesses (RSD, abdominal migraines, Celiac Sprue, Meniere’s Syndrome, etc.) I’ve met some physicians who belong on the inner rings of hell but after years of struggle I finally met a few doctors who are good Samaritans.  You will know when doctors get their angel wings every time that hell freezes over.  Okay I’m joking, sort of.

I was admitted to the hospital for unexplained neurological symptoms.  The neurologist came in with a gaggle of baby docs, did the usual neurological examination and said what so many have said before, “I don’t know what is wrong with you.”

My husband, a battle worn veteran of diagnostic warfare and physician retreat, requested that the neurologist order an MRI of my brain.  The neurologist complied.  Most doctors are willing to order an expensive test.  Why not, if the insurance company pays for it and they can be rid of a difficult case that could potential cost them time, money and liability by using  the authority of  The Test that will certainly show something if there is actually something wrong.

My MRI was consistent with FTD/shrinkage in the frontal and temporal lobes on the left side.  The neurologist had his own opinion.  Although he knew nothing about FTD, he told me that FTD was rare and I did not exhibit the symptoms so he was sure that I did not have FTD but I should follow up with another neurologist.

If, I had not been a professional patient then I probably would have gone to another neurologist who knew nothing about FTD.  I would have continued having greater difficulties with anxiety, depression, loss of speech.  When I started having auditory hallucinations then I would have probably been referred to a psychiatrist and  put on psychiatric medication that might make my FTD even worse.  My family totally baffled by these developments as I became incontinent and unable to speak would be advised by friends and the family physician that it was probably time to put me in a nursing home.  I might have died not ever knowing I had FTD.

As I mentioned, I belong to an FTD support group.  They are a really nice group of people almost all caregivers that provide a lot of good information and are very supportive to whoever joins the forum.

I am glad I found this group.  I can’t go out to a support group and there aren’t really any other FTD support groups online.  As the months passed, I discovered as many people do who have chronic, serious or terminal illnesses that I really wanted to talk to others who also had FTD.  It is great to have supportive friends but sometimes when your in this sort of situation you really want to talk to someone who is  down there in the trenches sinking in the same mud.

Fortunately, I met a very brave and compassionate woman who has FTD.  She’s made a documentary about families coping with FTD.  She invited me to a weekly chat group where I eventually met six other people with FTD.

Most medical literature says that the hallmark signs of FTD are acting out, personality changes, denial and lack of insight into illness.  Another FTD “researcher” told me despite my solid proof that I did indeed have FTD diagnosed at Johns Hopkins that I could not have FTD because of did not have these “hallmark” symptoms.  He told me he had reviewed 2000 cases (I later found out not actual people but autopsy slides of people) and all of them had the “hallmark” symptoms.

It is a fact that I have met a total of seven other people who have FTD, are able to communicate and have insight into their illness.  I realized if there are eight people who have FTD who did not have the classic early symptoms of FTD that neurologists use to screen for FTD then there are probably many people living their lives that are progressively becoming more difficult that don’t realize they have a terminal degenerative brain disease and they might have only a few more years to live.

This possibility really bothers me.  Most people who have terminal diseases have some forewarning even if it is a short period of time to say what they want to say to their loved ones and get their affairs in order.

No one knows when they are going to die and many people die in accidents.  Still it bugs me with all our modern medical technology that there may be thousands of people out there who don’t know that they have a devastating terminal illness.

Since most recognized FTD patients are unable to express their needs in a functional manner there is not the kind of support for FTD patients that there is for people with other terminal diseases.  Support for FTD on the Internet is primarily focused on caregivers.  I certainly agree that they need much  support but I think there should be more support in the medical community for FTD patients including those that are unable to communicate their needs.

Since FTD ,until recently, has been considered a rare disease even by FTD specialists, there are very few programs set up for FTD patients.  I wished that FTD patients were able to receive the same kind of support that Alzheimer’s patients are now receiving and that there were  more clinics that had programs and interaction for FTD patients.

New research in Alzheimer’s has also lead to new research in other neurogenerative diseases such as ALS, Parkinson’s and FTD.  I hope in the near future that there will be more programs for FTD patients.

Currently, FTD patients are treated with medications for symptoms.  Most FTD patients before they are diagnosed have been progressively having  increasing problems at their jobs and not long after they are diagnosed they end up having to go on leave or disability.  They remain at home with their families until their loved ones can no longer take care of them and then they are placed in nursing homes where they usually rapidly decline.

I have read about a lot of families that are wonderfully supportive and do everything they can to help their loved ones with FTD.  Also the Alzheimer’s Association has support groups for people with presenile dementia that people with FTD can attend.  Unfortunately, I am too disabled by my other illnesses to be able to attend a meeting.

Still, the burden of care and support remains with the families of loved ones.  If people with FTD don’t have loved ones that are able to take care of them and support them, they end up living alone until they cannot take care of themselves and then they are put into the nursing home.

I have not seen one article that addresses the possibility that there may be thousands of people who have FTD who do not know they have FTD because even FTD specialists rarely see “atypical” patients such as myself and the others who I have met who are “atypical” patients so they may not even know “atypical” patients exist.

It is a fact that there are people that have FTD who are able to communicate and have insight into our disease.  There must be others like us  who are probably falling through the cracks because they do not have the “hallmark” symptoms of FTD which are used as a screening tool for FTD.  Perhaps when FTD no longer is labeled as rare by most neurologist, this will occur to some physicians.

I read an article recently in which an FTD researcher speculated due to the new research breakthroughs they are making in discoveries about neurodegenrative diseases that the diagnosis of FTD may end up accounting for 65% of people who have presenile dementia.

I do not wish for anyone to have FTD but the more number of people who can be found that have FTD means larger amount of funding for further research and programs for people with FTD.

If people with FTD were like stars that scatter the universe and I was an angel, I would scoop them all up in my magical net and protect them under my wings.

I am one spiritual being who is having a human experience.  Part of my experience is living with FTD.  I do the only thing I am able which is  to tell people about what it is like living with FTD and giving support over the phone, the internet and always in my prayers.

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Posted in Autopsy, Dying, FTD, Health care issues, Living with Illness, Medical System, Neuropsychiatric evaluation, Physicians, Uncategorized | 18 Comments »

About Dying

2010-01-04

Today has not been a good day.  I’ve been having problems with pain and  I am lingering in depression.  I was telling Selch that my medication helps treat many of my symptoms but it can’t take away my disease.  My illness is like a dark invader who is always with me.  I feel him behind me.  Sometimes his dark hands rest on my shoulders.

There are times when I feel more freedom my illness  such as when I am praying.  My prayers are like a shield that guards against unwelcome thoughts.  In the best of times, I am with my Ishta (the desired form, the aspect of God that was given to me by my spiritual teacher.)  Listen to  Loreena McKennitt’s  Dark Night of the Soul.  It is a good description of the feelings I sometimes have.  The poem was originally written by St. John of The Cross, On a Dark Night.

Sometimes in the midst of a wonderful day-dream, I gradually see a small dark thread.  As I get closer, it becomes a long dark ribbon.  I know that it is my connection to death. I’ve considered touching it or perhaps even grasping it with a gentle tuggle.  Perhaps, I will do that someday.

Even though I have a terminal illness, no one can tell me how long I have to live.  It isn’t like some forms of cancer in which the doctor can make a determination based on survival rates.  This dark spider lays her “eggs” (sometime tau bodies) in various places within the frontal and temporal lobe.  No one can predict which neurons will die.

When I received a letter from my doctor’s office and Selch read those words Pick’s disease (FTD) , it altered my sense of physical self for the rest of the time I have left on Earth.

My life  has been filled with good times and bad.  There have been times when I was up to my neck in the mud of Earth immersed in life.  Experiences such as motherhood, marriage and career have drawn me into the same world as everyone else but at strange unexpected times I  have this sense of being on the outside looking in.

We all have to die and to find out that I will be living on the Earth a shorter amount of time than many of those I love dearly does make me feel sad.  Yet, now I have a sense that I may be going back to the place that I belong.

So, I do not fear death itself.  I call the dark presence an invader because I did not invite him to come and he draws physical life force from me pressing on my back forcing me to painfully exhale life energy.

We are not only our physical bodies.  I think what I fear more than death is the continuing experience of a faulty interface that will gradually  keep me from communicating that those that I love.  I’ve asked Selch if I will be able to find a way to tell him I am still here.  He says he will always know that I am here until I have departed from this life.

I have lost many things over 13 years of having a chronic pain syndrome and then five years of having symtpoms from my degenerative brain disorder.  I do not have  what people call their personal freedoms.  I’m not able to drive, I can’t do activities of daily living.  I have apathy about doing the most simple things  so I have to be constantly reminded even to drink water.  Yet, I am able to still read articles and stories on the computer and type on the computer.

As I mentioned before, the disease  has its own special design of destruction for everyone that it touches.  So, it is hard for me to explain to people  how disabled I actually am because I am still able to write.

In the last month, a few people who I know who have FTD have fallen several steps down the stairs of functionality.  It is hard to find anyone with FTD who can communicate.  I feel like there are a few of us are clinging to a lifeboat and when one of us slips down, it is a major loss.

Selch reminds me that this does not mean that the same thing  will happen to me but for me each time one of the members that falls off the raft,  is  a ray of hope has disappeared.

Before I started this post ,I read an article,  Hard Choices for a Comfortable Death: Sedation. The author of the article writes about his discussion about intraveneous “terminal sedation” with different doctors who are taking care of patients who are dying  in various hospitals.  The process of  IV “Terminal sedation”  involves bringing people with a terminal illness into the hospital, some who have been receiving home hospice care, because they are have extreme discomfort that can’t be managed by home hospice.

The doctor has a lot to consider in these situations including how the family feels and  previous wishes of patients to die at home with their loved ones that were made before they started having intolerable pain.

I’m not sure about how I feel about IV terminal sedation.  Many doctors argue that it is the disease itself  at the end that kills the patient, not the pain medication ,that they become tolerant off  in a short period of time.  For instance, how would that work for people like me who are already considered “opioid tolerant” meaning that I have been treated with narcotics by a physician over a long period of time so it requires a higher dosage to treat my pain.  Then I wondered if once people who are opioid tolerant are undergoing  IV sedation, are they still feeling pain at some level?

Many times during terminal IV sedation, the patient is not given any fluid or nourishment.  The physician explains that it helps the patient to rest more peacefully because the body isn’t stressed having to process liquid and food.  But, are they actually being “starved to death?”  These are questions I can’t answer.

I have been under IV sedation many times for many procedures.  Several times IV sedation was considered necessary for the doctor to give injections that contained pain relieving medication into my spinal nerves.  I received 8 course of IV sedation when I was in the hospital two years ago  for a month due to an enormous  deep vein thrombosis.  Those  attempts at IV sedation were not very successful in treating the pain caused by the procedure because the doctor wanted to give me less IV sedation because I was on a high dosage of pain medication.  I wish sometimes that chronic pain patient’s could carry a pocket pain management doctor around with them when they needed to undergo any treatment or procedure.

It would be nice to see the cheery young face of my nice Polish doctor explaining in a very scientific yet simple to understand manner to the no nothing about pain doctor why I actually require more IV sedation.

I have noticed from my personal experience and after reading multiple  articles about children and people who are chronically ill that have to undergo multiple procedures under general or IV sedation. They  are more prone to nightmares which involve removal of body parts, horrible creatures performing procedures, etc.  I have several dreams that would rate closely whith some of the most horrific movies ever made.  Perhaps that is why I don’t bother to watch the movies, I can see something much more grueosme and life like for no money in my dreams.   Perhaps the pain that we do not supposedly feel during procedures, sedation, altered states such as comas  is stored is displayed in other mediums  such as our dreams.

To sum it up, I am not totally sure that IV terminal sedation is a total painless, uncomfortable way to spend your last days or weeks on Earth.

Obviously, it has benefits for the family because they don’t have to see their loved ones suffering but on the other hand they are unable to talk to them before they die.

That brings one other thing to mind.  When we appear to be not there are we really still there?  It is something I’ve discussed before and I’m sure I will discuss again.

Bye for now

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Posted in Chronic Pain, Dying, Living with Illness, Opioid therapy, Physicians | 1 Comment »

One of Those Days

2009-12-19

Blogging down under.

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Reunited with my Recliner

2009-12-18

Selch and I have relocated due to an employment opportunity for him.

Our temporary quarters are in an extended stay hotel room.  It had a rather uncomfortable armchair. Selch, being the ever-so-thoughtful great guy that he is, had my leather Lazboy recliner moved in. I usually remain in it 24/7, except for occasional outings to see my favorite doctor in Manhattan, a movie, or an occasional trip to a restaurant that serves gluten-free food.

Anyone who has to sit for long periods due to illness knows that a comfortable chair is necessary equipment for getting by day-to-day and night-to-night.

In addition, my view has been wonderfully enhanced by two playful dragons on a room-divider screen.  What is behind there is a cavern of clutter, as the “closet” area has no door.

Now, I am becoming settled in my new nest.

It makes me want to sing:    http://www.youtube.com/watch?v=glC9jt9k

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Giving your symptoms names

2009-12-18

Any one with chronic pain or chronic illnesses knows that to get by it is best to maintain some sense of humor, no matter if anyone else “gets” it, you know what you mean, that is all that matters.

I saw this cute post today:

Have you named your illness symptoms? That may sound like an odd question, but there are some very good reasons for giving your symptoms names. One of them is this: when you give one of your symptoms a name, such as Gertrude or Elmer, you separate yourself from it. When you do that, you are much less likely to identify with it, which makes it possible to step back and see ways for dealing with it and managing its effects on your life that you otherwise couldn’t.

Here’s an example of what I mean: if you have a severe migraine, you may say to a friend or to yourself that you’ve been having awful migraine pain. But when you do this, you can easily feel like a victim. If instead, you tell your friend or yourself that “Sylvester” has been acting up and making himself felt, you don’t make it personal, so you are much less likely to feel like a victim.

A related benefit of naming your symptoms is that it allows you to communicate with them. You can write to them and tell them how they’ve affected your life, and you can tell them how you have felt, and continue to feel, with them. When you do that, you will probably find that you feel a sense of relief and even freedom.

You can also talk to and even have a conversation with “Sherlock” or “Agnes” (or whatever you’ve named your symptoms). When you do, besides telling them how you feel about them, you can ask them if there is anything they want you to know. You can ask them what are the things you do and the situations that make them worse and you can ask them what changes you can make to lessen their severity and minimize their impact on your life.

End of Post.

If people with multiple personality disorders can do it, we should be able to be as equally creative or more.   Illness may narrow your abilities to do certain things but it gives you an opportunity (when you are not trapped in a whirlwind of pain and unwanted thoughts) of time to reflect and open your mind to possibilities like when you were a child looking at the stars or the clouds.

I read recently that physicians are finding some people who have FTD while they lose their ability to process numbers etc. are becoming more creative and are more able to express  themselves artistically.  There are many ways to be artistic: painting, drawing, writing, collaging, making jewelry, etc.  I participate in something I call creative television watching.

I love to watch Turner Classic Movies.  Sometimes when I am watching a movie for the second, third, fourth time, I imagine what it would be like if they re-arranged the furniture, if the guy hadn’t gotten on the train, or if he had gotten on the wrong train or maybe the train didn’t show up at all.  After a good movie often I think about the movie and the characters, imagining what might have happened  after the end of the story, an entirely different story perhaps.

I think about possible future inventions and one gadget I would really like would be something that connects to your brain patterns and to my favorite movie so that I am able to take the characters and create additional scenes and plotlines.

You might think I have too much time, but my time like everyone else’s time is limited.  I just know that my curtain call for this life character is sooner than I use to believe.  I wonder when you  leave off stage does someone direct you to the right or the left or do you just stumble out into the audience?

Back to the naming illnesses.  I think I’ll give the name game a try.  My father use to call me Myrtlerayleenajane.  There’s a few names to start.

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Looking for My Lost Bass Clef, on Celtic Moon

2009-10-28

I love music.  I’ve played the piano since I was seven.  The last time I tried to play, I discovered that I wasn’t able to read the bass clef on a sheet of music.  Also, my left hand had lost its musical memory for the bass clef.  I visualized playing the saxophone, which is treble clef, and my left hand remembered the notes.

I could not remember the most fundamental things:  notes. Like almost everyone who learns to play the piano when they are young, your piano teacher encourages you to make up funny lines to remember the name of each key and letters on the clef.  As I sat in front of my piano, my mind was blank.  I longed for those phrases I tossed aside long ago.  I opened the lid of my piano bench where I use to store trinkets, such as an an apple green spiral notebook with crazy white notes scattered on the cover, that contained my first six months of music theory.  Then, I remembered that I had put what was left of my beginning piano music in a file drawer.  Three rows of steel cabinets were downstairs in the basement.  There was no way I would be able to navigate the stairs.

When I was a girl, my teacher use to give me plastic busts of composers each year.  My favorite bust was given to me by my mother.  It was as larger bust of a handsome young Chopin with blue eyes and cornflower blond hair.  Once, when I was eight, I was having a difficult time playing a piece and I took the bust outside, placed in on the grass and danced around it.  I was wearing a sunny yellow dress then, in Texas.  But as I sat there at the piano that day, I pictured myself going outside in my house dress and dancing a jig with the crazy old Turkish woman who lived across the street.  No inspiration there.  No bass clef.

Now as I sit here typing, those childhood phrases are flooding my mind.  Every Good Boy Does Fine Always, FACE Good Boys, Bad Girls Eat Candy All Fall, All Funny Black Geese Eat.  My piano is in storage now.  But, down the hall in a small room there sits my childhood piano, terribly out of tune, its legs gnawed from a crazy dog and sticky keys from a gaggle of young nieces trying to play Heart and Soul.  Maybe it’s time two old friends got together.  Maybe I can find my lost bass clef.

Right now I’m listening to Live365 radio on the internet.  One of my favorite stations is Celtic Moon.  If you are a fan of Loreena McKennitt‘s style of music, then you should tune into this station.

What I love about Live365 radio, is they provide so many small radio stations that play different types of music.  My brother listens to it when he gets home from work.  He is also a fan of Celtic music.  But, his tastes have always been more eclectic.  I will never forget the timeless melody of Dead Skunk in the Middle of the Road which he played over and over again on his turntable.  He is the only person I know that has the entire musical collection of Focus, a yodeling foreign rock band founded by a classically trained flautist.

It’s time for me to go to an on-line support group meeting, so goodbye for now.

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