Posts Tagged ‘prayer’

Chronic pain- Recent Updates

2010-03-04

Hi everyone,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Let me give you a personal example.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 »

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 »