Tag Archives: Chronic Pain

One More Update

Love

 

One More Update from Brooke.

Her doctor was able to get hospice care reinstated for her for 60 days.

Today, we live in a time where, being sick is not acceptable, and people who have misunderstood chronic illnesses, there aren’t many medical practitioners who are cut out to care for them.  Not only not cut out to care for them, they have no compassion and pass the patients off as depressed.

Today, it seems as if you don’t have something like cancer or AIDS, your illness doesn’t qualify, as in Brooke’s case, her hospice care was discontinued because she wasn’t “considered to be dying.”  That’s just so awful.

People with chronic illness who are basically living a “living death”, there are no words because I can’t even think of the words because I’m one of those people.  I know I myself will probably die alone, no hospice, no support, nothing.  And I know there is nothing I can do about it. I have come to accept it because unfortunately that’s the way it is.

I ask everyone to pray for peace and comfort for Brooke during this time.

 

Documenting M.E.

Dear Friends,

Recently there have been a lot of questions in the community about what has happened to me and where I am with things. I am now very near the end of life, and writing posts has become next to impossible, but I wanted to try to get one more out. This post will be written in many parts, and may seem rough around the edges, but it is the best that I can do at this point. I know you will understand.

First, regarding care. My initial reevaluation for hospice care was denied – in part due to misinformation coming from the whole CFS mixup. After this, my doctor agreed to treat me himself, without the aid of nurses since he couldn’t find a way to get any into the home. Things began going downhill so fast, however, that he recently talked the hospice team into readmitting me…

View original post 924 more words

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“GET” And The House Of Commons Gym Part 4

 

 


Graded Exercise Therapy and The House Of Commons Gym

Part 4

In Memory Of M.E. Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 

 

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

 

From The Nurse Point of View! 

I will point out again like I said in my previous blog posts, i’m coming from an R.N. point of view for the benefit of the patients because I was an active R.N. until I was no longer able to work because of M.E.

I actually couldn’t respond from a patient point of view because I would lose focus on the subject, and I would end up sounding more like an angry patient than a nurse who is very disappointed because of the lack of the standard of patient care in regards to this illness.

 

Review Of The Facts!

According to Malcolm Hooper’s “Magical Medicine: How To Make A Disease Disappear:”

 

“On 13th December 1988 Brynmor John MP died from ME/CFS. His experience of the illness was all too familiar:

Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’. -Brynmor John

He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength.

He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS.

Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.”

.

Let’s Assess!

Brynmor John could no longer walk on that slight gradient from his house to the main road,  as he stated

“I could just not get up it.”


Prior to becoming ill Brynmor John was able walk up that gradient, otherwise he wouldn’t of made that statement.

Brynmor John was to weak to put his clothes on and  he could no longer tolerate exertion.

Brynmor John also suffered the abnormal recovery time to the slightest exertion. as “it took days to regain his strength.”

Prior to becoming ill, Brynmor John did not have a problem dressing before he became ill nor did the slightest exertion exhaust him, otherwise that would not have been noted as well.

Remember, Brynmor John was only 54 years old.  A healthy 54 year old man or woman would not have a problem walking up a slight gradient, would not have a problem dressing,  nor have a problem tolerating exertion.

“Abnormal Recovery Time” is expected as we know in patients with M.E. after exertion.


Abnormal Recovery Time

Abnormal recovery time was already a known symptom of M.E. or Myalgic Encephalomyelitis in 1988.

The 1986 Ramsay Definition for Myalgic Encephalomyelitis Compliments of NAME-US.org Stated:


“Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.”


Brynmor John was suffering other symptoms in addition to the abnormal recovery time!

 

“Not A ‘Seasoned Veteran'”

Malcolm Hooper’s

Magical Medicine: How To Make A Disease Disappear stated that Brynmor John

was trying to ensure better understanding of ME/CFS,” 

which meant he was a newer patient.

Brynmor John was not a “seasoned veteran” as far as being an M.E. patient, Brynmor John was still trying to learn about the illness.

Since Brynmor John was not a “seasoned veteran” of M.E.,  Brynmor John would not of known if the additional symptoms he was suffering were additional complications.


A Closer Look:

I did a search and I found where Brynmor John lived so we could take a look at the property where he lived and the gradient that he stated he could no longer walk up on the way to the Main Rd.

Brynmor John’s actual home address was:  Yale Haven, Station Rd, Church Station, Pontypridd, Rhonnda Cynon Taff, CF38 1AF, U.K. compliments of Welsh Biography Online and Google Maps

Yale Haven is the name of Brynmor John’s house.  Many houses in England have names instead of being noted as a number in a street address.


Google Map of the area:  

The map shows “Yale Haven” which was Brynmor John’s house.
Just north of Yale Haven is  Main Rd.  Station Rd is on the left of Yale Haven.

BrynmorJohnHouseMap


Google Maps Street View:

This is the Station Rd view of Brynmor John’s property which is in back of the trees on the right.

 YaleHavenStationRoadView

 


Google Maps Street View of “Yale Haven”:

Yale Haven, which was Brynmor John’s house is on the right. The Main Rd is on the left.

BrynmorJohnHouse_02

 

The gradient Brynmor John was talking about is on the right side of the house where the driveway is that leads to the street to the Main Rd. 

As you can see, that is a not a long walk.

A person with Mild or Moderate ME could walk that short walk and suffer their post activity exacerbation of symptoms after the fact.

Brynmor John’s symptoms he was experiencing in addition to the abnormal recovery time was different, Brynmor John stated:


“‘Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’

Brynmor John could no longer walk up that slight gradient at all!

Brynmor John was 54 years old.  If  Brynmor John was a healthy person, he should not have had a problem walking on that gradient.  The gradient is not a steep gradient.

Up until Brynmor John became an M.E. patient he was able walk up that actual gradient to the main road, if he could not walk up that gradient going to the Main Road,  Brynmor John would not have made the statement:


I just could not get up it!”


Brynmor John should not have had a problem continuing to walk on the property where he lived if the exercise prescription was the proper recommendation.


Was Something Missed?

Brynmor John was advised by his doctor to “Exercise his way back to fitness” as stated in “Magical Medicine: How To Make A Disease Disappear.”

Brynmor John had listened to his doctors advice and attempted to “exercise his way back to fitness” as his doctor advised.

Instead of becoming “Fit,” Brynmor John not only suffered the increase in his abnormal recovery time, he became so weak that he could not dress, he could not tolerate exertion, and he could not walk up the gradient to the Main Road from his house.

We also see no further documentation as far as Brynmor John’s doctor investigating further as to why Brynmor John’s condition was not improving and why Brynmor John could not walk up that gradient.

Brynmor John was still exercising at the House of Commons Gym because he was exercising right before he died, December 15th, 1988.

Brynmor John was also still working as of December 5th which was the day of his last noted contribution to UK Parliament regarding “Environmental Problems.”

Brynmor John was still both working and exercising.

Brynmor John did not improve.

Not only did Brynmor John not improve, Brynmor John suffered the worse complication that one could suffer, Brynmor John went into Cardiac Arrest immediately after he was exercising while exiting the House of Commons Gym.

 

Why did Brynmor John’s doctor not listen?

Malcolm Hooper’s Magical Medicine: How To Make An Illness Disappear” stated that Brynmor John:

“was irritated by the profusion of psychiatric comment.”

The “profusion of psychiatric comment“that Brynmor John was talking about was the intrusion of the “psychiatric lobby” which was led by Professor Simon Wessely and his colleagues known as the “Wessely School.”

The school of thought of  the “profusion of psychiatric comment” or “Wessely School” believes that M.E. is a myth, a psychiatric disorder, or what Professor Wessely believes to be “functional somatic syndrome” or behavioral disorder where the patient has medically unexplained fatigue caused by inappropriate illness beliefs.

Thus, Brynmor John’s doctor did not “hear” Brynmor John’s complaint of symptoms because Brynmor John’s doctor was of the school of the “profusion of psychiatric comment“, better known as the belief of the Wessely School definition of “CFS/ME” which is what the Wessely School classify M.E. as.

The “profusion of psychiatric comment” or “Wessely School” belief for the treatment of “CFS/ME” is psychiatric and their treatment for “CFS/ME” is what is called “CBT” or Cognitive Behavioral Therapy and
“GET” or Graded Exercise Therapy.

The “Wessely School” belief for the treatment of Cognitive Behavioral Therapy is to “cure” the “dysfunctional beliefs” of patients who only “think” they have a non-existent illness called “ME”,

The “Wessely School” belief for the treatment of “GET” or Graded Exercise Therapy was to reverse the change that resulted in deconditioning in patients who avoided activity because the patients had a false belief of illness.

 


A Few More Clues!

 

All of the M.E. patients who are reading this, what do some of our lab results show?

If you know the different items in the lab results,  which of those items can affect the heart?

What can those items do to the heart?

Can you think of another M.E. patient who died of Sudden Cardiac death because that patient wasn’t examined further?

If you know who that M.E. patient is who I am referring to, what was wrong with that M.E. patients heart?

 

 

If you can identify what is being described and asked in the questions above:

-Should Brynmor John’s doctor continued to have allowed Brynmor John to keep exercising “his way back to fitness?”

-Should Brynmor John’s doctor have possibly known what the problem was according to Brynmor John’s symptoms and discontinued  Brynmor John’s exercise prescription to investigate further to confirm?

 

What did Brynmor John’s doctor miss that caused Brynmor John to suffer sudden cardiac death after he exercised in the House of Commons Gym?

??????????

 

Fellow Patients And Others:

If you think you know the answer, please leave it in the comments.

If we the patients are to be effective advocates for this illness,  the complications must be pointed out, not just the symptoms that make this illness unique in comparison to other illnesses.

The discussion should not be “Do M.E. or “CFS” patients die”, the discussion should be, what are the specific complications that M.E. or “CFS” patients die from and why do those complications occur!

I included “CFS” because patients are diagnosed “CFS” or “ME/CFS”  here in the United States.

There is no need to dance around the truth about this and other complications!

M.E. patients have serious and potentially lethal complications and they must be pointed out!

As the complications are discussed,  this information will circulate via the internet and social media that we didn’t have 25 years ago where we could not do that.

Because we as patients could not do that 25 years ago, this illness has gone from the infectious disease department to the psychological propaganda department.

Brynmor John died in 1988 the other patient I pointed about above died 16 years later  because of the same thing which was missed causing Sudden Cardiac Death that I did not state yet.

Do you think Brynmor John and the patient who died 16 years later have been the only two patients who died of  Sudden Cardiac Death because something major was missed because of something that could’ve been very easy to diagnose?

 

Yes, I say “EASY TO DIAGNOSE,” and I shake my head because I was an active R.N. and I knew this and I cant believe that there are many physicians today who do NOT know this!

BeNiceToNurses

 

To Be Continued……..


The whole idea you can take a disease like this and exercise your way to health is foolishness, it is insane.”~Dr. Paul Cheney~

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!


“GET” and The House Of Commons Gym Part 3

 

   Graded Exercise Therapy and The House Of Commons Gym

Part 3

In Memory Of M.E. Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 

 

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

 

From The Nurse Point of View

I will point out again like I have before, remember, I’m coming from an R.N. point of view for the benefit of the patients because I was an active R.N. until I was no longer able to work because of M.E.

I actually couldn’t respond from a patient point of view because I would lose focus on the subject, and I would end up sounding more like an angry patient than a nurse who is very disappointed because of the lack of the standard of patient care in regards to this illness.

 

How Do the Readers Know that The Nurse Point of View For This Particular Blog Post They Are Reading Here  Is Actually Correct?

If you are reading this blog for the first time, I was actually an active Registered Nurse in New York City, before I became too ill with M.E. to no longer work. Those who know me, know that to be true.

One of my specialty areas was Cardiac. I worked in the Cardiac Care Unit of the medical center in New York City, which is featured in the YouTube video below of a current TV program. There are no actors in the video and everything filmed were actual events 2 years ago, while they were filming to make the program. This video would pretty much give you an idea of how busy any of the ICU’s was in that type of medical center, including the CCU where I worked.

I was also a Cardiac Rehab nurse in 2 different centers in New York City as well.

 


The hospital is New York Presbyterian Hospital (known as New York Hospital/Cornell Medical Center when I worked there), which has always been in the top 10 hospitals in the US for Cardiac Care and Surgery. You can read information about their Cardiology department here , so you can decide whether or not I actually know what I am talking about.

 

What actually happened to Brynmor John? 

Why did this not have to happen?

Why was the doctor recommendation or prescription wrong?

Why was this actually wrongful death and negligent malpractice?

On The Scene Cardiac Arrest Event

Before I answer those questions, which I will start to do in Part 4, I wanted to find a video on YouTube so you can see an actual demonstration on the scene of a cardiac arrest response from the emergency services.

In the entirety of this blog post, I feel that everyone must know the different aspects of Brynmor John’s case in order to understand the potentially lethal treatment recommendations that Brynmor John’s doctor prescribed him, which includes the scene from the Emergency Services video, so you can see why Brynmor John could not be successfully resuscitated. This is so everyone can see just how serious this unethical treatment protocol is.

It took a little while to find an older version of the video  below, because I want you to see what the realistic version for 1988 would be, which happens to be the year Brynmor John died.

The reason being is that the CPR protocol was different in 1988 than it is now. BCLS or Basic Cardiac Life Support is revised each year in order to increase the survival rate. If you happen to know what the current CPR protocol is, you can see that it is an older protocol or obviously slower than what the protocol is today.

I could not find a video old enough to show you one where the Emergency Services did not have a defibrillator, because the ambulances did not have defibrillators in London until 1990. I found that information here when I was researching to find when defibrillators were originally in the ambulances in England. The reason being is because Brynmor John as we know died December 13th 1988.

Before I show you the video, I have to explain why the defibrillator would be important!

 

Why would the defibrillator be important?

If you take a look at that link above about where I found when defibrillators were originally in the ambulances in London, you will read that most cardiac arrests occur outside of the hospital.
Professor Frank Pantridge who along with Dr. Geddes of the Royal Victoria Hospital of Belfast, who actually produced the first portable defibrillator in 1964, and who was referred to as “The Father Of Emergency Medicine” or “Grandfather of Prehospital ALS or Advanced Life Support” believed that “immediate correction of v-fib should be done at the scene of the event“, which we know to be true in the hospital as well.
ProfessorFrankPantridge

Professor Frank Pantridge

JAMES FRANCIS “FRANK” PANTRIDGE, MD, CBE
October 3,1916 – December 26,2004

 

What is V-Fib or V-Fib Arrest?

V-Fib is Ventricular Fibrillation, which is a lethal cardiac arrhythmia during cardiac arrest.  If you are not resuscitated from “V-fib” with a defibrillator, you will die.

Ventricular Fibrillation looks like this on the EKG:

VFib

 

A Normal EKG or what is called “Normal Sinus Rhythm” looks like this:

Normal Sinus Rhythm

 

When someone goes into Cardiac Arrest, every second makes a difference because oxygen is not getting to the brain via the pumping of the heart. You only have minutes to save the patient before brain death occurs. The longer you wait to do cardioversion or “shock” the patient with the defibrillator to shock the heart back into a normal sinus rhythm the chances of saving that patient are less to none.

Here is information from the American Heart Association About CPR. You never know, you may be the one who saves your loved ones life because you knew how to do CPR!

Video of an actual  On the Scene Cardiac Arrest Event:

 

This video was actually done in Chicago in 1994 by the Chicago Fire Department Emergency services, where they responded to a call for someone who was found unresponsive, in cardiac arrest.

As you know, you can see the timer on the bottom right of the video. It takes the EMS over a minute to get there. This was probably the case when the EMS responded to the scene where Brynmor John was or depending on how far away the EMS was from Brynmor John’s location, which was the House Of Commons Gym.

If you notice, one of the firemen is doing CPR, another is providing the airway or breathing for the patient, that bag he is holding is called an ambu-bag. Another fireman is charging the defibrillator which is the portable machine that have wires which are connected to those paddles he is holding that he is going to put on the man’s chest to try to defibrillate the patient. The EMS people who responded to the scene where Brynmor John was did NOT have a defibrillator because the year was 1988. Remember, ambulances in England did not have defibrillators until 1990.

DefibPatient

If you see the screen on the cardiac monitor, the black screen with the wavy line. You don’t see the “Normal Sinus Rhythm” that is in the EKG example above. The man didn’t respond.  The protocol is to shock the patient 3 times in a row.  It looks like the video was probably edited. You only see them shocking the patient one time, and then the video shows the cardiac monitor, which shows that the man didn’t respond. Sometime during that response, they did put an IV to give the patient emergency drugs.

Asystole

 

The flat or almost flat wavy line is called Asystole or complete cardiac standstill or arrest. That man did not respond. The EMS from the fire department put him in the ambulance to bring him to the hospital because the doctor in the emergency room would be the one to pronounce the patient deceased at that point.

 

Usually, when they remove the cardiac arrest patient from the ambulance, the emergency room doctors and nurses would’ve been out there waiting. They would be moving much quicker to get the patient inside to the emergency room if they were expecting to receive a patient, which they would’ve known ahead of time that responded to the Advance Cardiac Life Support, which was administered by the fire department emergency services.

As you can see in that video, there were no doctors and nurses waiting outside. They already knew ahead of time what the condition of the patient was because the EMS, which were the firemen in that video who radioed ahead to let the hospital know that they were bringing this man who would be “DOA” which means “Dead On Arrival.”

That man did not survive! 

The fireman was doing CPR while they were bringing the patient on the stretcher into the emergency room because he was not officially pronounced deceased if you are wondering why the fireman is doing that. Only the doctor can do that, so the fireman or paramedic has to keep doing CPR until the doctor pronounces that the patient is deceased.

DeathBrokenHeart

 
Compliments of Baseline Of Health Heart Foundation

 

What you just saw was the same type of scenario that happened to Brynmor John after he went into cardiac arrest, while he was walking through the doors of the House of Commons Gym to go home.

We know that Brynmor John didn’t make it like the man in the video did not make it.

Brynmor John died December 18th, 1988 after exercising in the House of Commons Gym as per his doctor recommendations or as prescribed by his doctor Malcolm Hooper stated in “Magical Medicine:”

 

“Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.”

 

WrongfulDeath5

To be continued in Part 4-> Click *HERE*.

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!

 

 


“GET” and The House Of Commons Gym Part 2

 

 

Graded Exercise Therapy and The House Of Commons Gym

Part 2

In Memory Of ME Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 

 ]

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

 

What Really Happened To Brynmor John?

First we have to look at the situation!

 

According to Malcolm Hooper’s “Magical Medicine:”

On 13th December 1988 Brynmor John MP died from ME/CFS.
His experience of the illness was all too familiar:

‘Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’ -Brynmor John

He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength.

He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS.

Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.

 

According to MedLibrary.Org and Wikipedia:

Brynmor Thomas John (18 April 1934 – 13 December 1988) was a British Labour politician.
John was Member of Parliament for Pontypridd in South Wales from 1970 until he died in 1988 at the age of 54. During the Labour government of 1974 to 1979, he was a junior Defence minister for the Royal Air Force (RAF) (1974–1976) and a Home Office minister (1976–1979).

The circumstances of his later life and premature death are cited by physicians postulating one school of thought concerning treatment of chronic fatigue syndrome. Brynmor John had been diagnosed with the illness, and died suddenly immediately after exiting the House of Commons gym. He had been following an exercise regime based on what is argued to be unfounded medical advice: that sufferers may exercise their way toward a cure for the illness

 

Lets take a look at the House of Commons Gym 

These images were from different sources on google images including The Westminster Gym and Daily Mail Online UK.

As you can see, the House of Commons Gym is a big gym, a big fitness center, sort of like a Jack LaLane or an La Fitness which are here in the United States.   People are exercising on the machines….

The gym is actually called “The Westminster Gym” , the staff gym for members of Parliament.  Looks very nice, nice amenities.

HouseOfCommonGym_01

Membership includes access to 100 different gyms across London which include pools, group exercise classes, sauna.

HouseOfCommonsGym_02

They have strength machines and free weights!

HouseOfCommonsGym_03

A 40-Station Gym which includes steppers, rowers, cycles, cross trainers which include touch screen technology, a place to dock your ipod and your own person tv viewing screen. State of the art technology!

HouseOfCommonsGym_04
They have brand new “Trixter” bikes which are supposed to offer virtual reality cycling.

They offer classes too: Pilates, circuit training, yoga.

HouseOfCommonsGym_05

 

They even have personal trainers to help you achieve your goal!

Fitness Instructor Training from just £13.50 per 45mins. Not too bad, that’s a good price.  That must be a discounted price for members, personal trainers here in the US charge over $100 an hour.

Air Conditioned so you stay cool while exercising.

Opened Monday to Friday so the members can work out right next to where they work.

 

SomethingIsMissing

 

Something is missing……

They don’t offer something on that list!

Something is missing on that list……

Lets take a look at the pictures where the people are.

Something is missing in those pictures too.

I should say someone is missing in those pictures.

I don’t see a nurse

Do any of you see a nurse?

No nurse!

We do not see a nurse because this is NOT a medically supervised center!!!!!!

 

Malpractice1

 

 

Brynmor John Was Exercising In A Non-Medically Supervised Center!!!!!

I must focus and hold my composure, because my temperature is rising!

What is wrong with this scenario?

Why was this wrong?

Why should he not have been exercising there in the first place?

Why should he have NOT BEEN EXERCISING AT ALL???

This should NOT HAVE HAPPENED?

His physician was missing the item that is in the 2nd picture above this one!

 

Physician Misconduct

 

This was more than a big blunder by Brynmor John’s doctor!

 

To be continued………

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!

 


“GET” and The House Of Commons Gym Part 1

 

Graded Exercise Therapy and The House Of Commons Gym

Part 1

In Memory Of ME Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 

JOHN, BRYNMOR THOMAS (19341988), Labour politician. He was born on 18 April 1934, the son of William Henry John, a painter and decorator, and Sarah Jane John. He received his education at Wood Road elementary school, Treforest, Pontypridd Boys’ Grammar School and University College, London. He graduated Ll. B. (Hons.) in 1954. He was an articled clerk, 1954-57 and he became a solicitor in 1957. He was on National Service, 1958-60, serving as an officer with the education branch of the RAF. As a partner from 1960 to 1970 in the firm of Morgan, Bruce and Nicholas, Pontypridd, John specialised in industrial accident cases.

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

He had joined the Labour Party at the age of eighteen, and was secretary of the Labour Party at University College, London. He was active in the local Labour Party in Pontypridd. He was elected Labour MP for Pontypridd in the general election of 1970 as successor to Arthur Pearson and he continued to represent the constituency until his death. He had first come to prominence in his opposition to the visit of the Welsh hockey team to South Africa and he was a committed devolutionist. Brynmor John was Under-secretary of State for defence for the RAF, under Harold Wilson, March 1974—April 1976, and then Minister of State at the Home Office during the Callaghan government of April 1976—May 1979. He was regarded as a safe pair of hands who seldom ran into controversy. He served as chairman of the Welsh Labour Group, 1983—84. He was also opposition spokesman on Northern Ireland, 1979—80, defence, 1980—81, social services, 1981—83, and agriculture, 1984—87.

He was a fierce anti—unilaterist who stormed out of the Labour Party conference at Brighton in 1981 when chairman Alex Kitson refused to call him to speak. He was then quickly replaced in that shadow portfolio by John Silkin. Subsequently Brynmor John was not prominent in the party councils. He was named as a possible defector to the SDP in 1981, but deeply resented the insinuation, telling students at the Polytechnic of Wales that the actions of the SDP were designed to ensure the triumph of the hard left. He was also a bitter opponent of the Labour Party’s Militant infiltrators. He had backed Roy Hattersley in the 1983 Labour Party leadership contest, and was promptly sacked by Neil Kinnock from the shadow cabinet. During his last years he had thrown himself into his constituency work with renewed vigour. He was a grey—haired, bespectacled figure, somewhat lacking in charisma. But it was easy to underestimate him, and he had a witty felicity in debate.

He married on 6 August 1960 Anne Pryce Hughes, the daughter of David L. Hughes. They had one son and one daughter. They lived at ‘Yalehaven’, Church Village, near Pontypridd. His hobby was watching rugby football. He died on 13 December 1988 at St Thomas’s hospital, London after suffering a heart attack and was cremated at Glyntaff Crematorium. He was succeeded by Kim Howells MP.

~Compliments of Welsh Biography Online~

 

I never saw a proper tribute to this patient.

I felt it was long over-due.

The Question is , What REALLY  happened to Brynmor John?

To be continued…..

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!

 


Its Time For Meds……I Must Be Insane!

 

TimeForMeds_1

How many medication and vitamin pill bottles are in your pill bag?

When it’s time to take meds, and  I look in my bag of medication bottles,  I always think, do I actually take all of that?  Because anyone who would see all of those pill bottles would think, does she actually take all of that?  She must be crazy!

If anyone who is reading this that has an “understood” illness, you probably have no idea what im talking about.  You are thinking, what is she talking about, how many pills does she take?  I guess im not doing too bad,  I only take 2 pills a day.

If you are new to the illness club, you probably do not like the idea of  taking meds for the first time on a regular basis, especially if its 2 pills, 2 pills are 2 too many for you.  You are probably already thinking by next year this time, that you will not be taking those 2 pills a day, that you are going to kick that illness and say good-bye to those pills.

Imagine if there were no medications for your illness, what would you do?

TimeForMeds5

 

Before I go on…..

this always makes me think about a patient who was a patient on the first floor that I worked on.  The first floor that I worked on, 1/2 of the patients were neurosurgery patients.

This particular patient was a patient of a world reknown neurosurgeon named Dr. Bronson Ray, who happened to have been a surgeon in the hospital for many years and was retired.  The patient was the first survivor of a particular surgery that was done in 1959, and Dr. Bronson was the surgeon.  Everyone was excited that one of Dr. Bronson’s patients was there. This patient was the celebrity because she had been one of Dr. Bronson’s patients.

 

DrBronsonRayDr. Bronson S. Ray

 

Well the conversation soon changed, it wasn’t about this patient being one of Dr. Bronson’s patients, it was about how she took her meds.

When it came time to give this patient her meds, she was on so many meds, by the time you finished putting them in the medication cup, there were 27 pills. The 27 pills weren’t just little pills, there were big pills in that bunch, there were capsules that were the size of one of those huge omega 3 fish oil pills. This was everytime she got her meds which was more than once a day.

After all the pills were in the cup, this patient always held out her hand, she wanted all the pills in her hand.  As soon as you would put all of those pills in her hand, she would actually toss them in her mouth, and when you would hand her the cup with the water, she would always say, just sit it right there, and she would proceed to read her newspaper.  She was able to swallow all of those pills without any water.

 

So, not only did she not drink any water to take her pills, she was able to toss all of those pills right down, and it didn’t even look like she was swallowing all of those pills. This patient had that down to a science. She did that everytime she got her meds.

I was still a new nurse, just there a few months, and I was absolutely fascinated. I wondered, how did she do that without choking on all of those pills.  I thought, I couldn’t even take one motrin at that time without drinking a big glass of water, and here is this patient who could take all of those pills in one shot, with no water.

The first few times I gave her meds, I was a little skeptical.  There were 3 other patients in her room, as I gave them their meds, I watched to see if she really did swallow all of those pills.

When I was in the coffee room, I asked the other nurse I worked with if she gave that patient who had been one of Dr. Bronson’s patients medications before.  The first thing my co-worker said, yes, she swallows all of those pills with no water.

Talk about a tough as nails patient!  That lady was tough as nails!  If you think about it, she would have to be tough as nails, to have a surgery at one time, that she didn’t know whether or not she was going to wake up!

Back to medication time!

Imagine being new to the illness club, and there were no medications specific for your illness, what would you do?

Well, all of us who have one of these “misunderstood” illnesses, we are sort of in those shoes.  Those of us with M.E., have no specific drugs for our illness that is approved by the FDA at all, NONE!

The doctor can prescribe (if they know what they are doing) some prescription meds for the symptoms, such as pain meds, B12 shots, potassium, magnesium, sleep medication, anti-virals, that’s about it! Those of us who are unable to work because of the illness, are unable to work because there are no specific meds that will make us symptom free and able to go back to work.

There are a few “off label” medications, which are medications that are not approved by the FDA, but you have to pay cash for them, insurance doesn’t cover those meds.  Most people do not have a $2000 + a month for off label medications. If we do, eventually we go broke trying to get well. Even the off label drugs do not make you symptom free, maybe reduce some of the symptoms, but not symptom free.

So, what do we do if we have no specific medications?

One of the things we do is, we venture off to the health food store.  Usually by that time, most of us have a network of friends with the illness or similar one, and one of the things we talk about, is which supplements are good to take. We try them hoping, the supplement will do something or even work like a medication.

Sometimes or many times we end up with a lot of vitamins such as these that you see in the picture.  

Yes, I know what you are thinking, does she actually take all of those vitamin pills??

 

The answer is YES!

And,

YES, everyday at one time or another,  the thought goes through my mind, that I must be insane when I look at all of those pills and pill bottles.

Back to the patient that I just talked about, 

26 years before I met her, she went into the operating room, for a surgery that she did not know whether or not she was going to wake up.  Some people would think, I wouldn’t do that, that woman must’ve be incredibly brave or incredibly crazy.

Was she insane?

No!

What that patient had, was the will to live. When someone has the will to live, they don’t think about things, they just do them! In her case, surgery was her only option.

Even after 20 years,  even when I feel like I am slowly dying, which is about everyday, there has never been a day where I did not think I would not be well the next day. I still believe that one day, I will be well  and that includes tomorrow.

Am I insane?

If you say yes, then you are calling most every patient with M.E. insane because we all or most of us do this!

Because we have the will to live like that patient had the will to live!

The will to live includes, never giving up hope, wanting to be well when we wake up tomorrow. The will to live makes us “do what we gotta do” whether its having surgery knowing we may never wake up or as in the case of M.E. patients, trying every supplement under the sun in that health food store,  or on that website of our favorite mail order vitamin and supplement company!

 

 

“The Other Side Of The Stretcher” (c) 2014

Fatigue is the wrong word,
Fatigue is a silly word”

~Dr. Elizabeth Dowsett~

This blog is not for medical advice.
For medical advice, you must speak with your physician!

 


The Patience of A Patient


Fellow friends with “misunderstood” illnesses,
hope all of you are hanging in there today! 🙂

Warning to the grammar police: I do make typos and my grammar is lousy. It’s a symptom of my illness and cant be helped :).
If it bothers you that much, there are many other blogs you can go read. I will not be insulted, I assure you! 🙂

Anyway,

I’m hanging in there as best as one could with M.E…
For those whose are thinking, she must’ve made a typo, she probably meant M.S. … No, not a typo, M.E. is the right abbreviation. M.E. is abbreviation for Myalgic Encephalomyelitis.

I know, what the heck is Myalgic Encephalomyelitis…you have probably heard of the other name that is used for M.E. which is
Chronic Fatigue Syndrome…..

Yes, that “fatigue” thing, but “fatigue” was the wrong word
thrown in there by a doctor with a supposed high “IQ”
who really wasn’t using his high “IQ.”

Chronic was also the wrong word too, because we all know chronic illnesses are chronic, so “chronic” shouldn’t of been thrown in there either. If you think about it, R.A. isn’t “Chronic Stiff And Crooked Joints”, its R.A.. M.S. isn’t called “Chronic Damaged Nerves”, its M.S.. Diabetes isn’t called “Chronic high blood sugar syndrome, its called Diabetes.

So the doctor who came up with “THAT” name, (CFS), definitely wasn’t using that high “IQ” of his, that got him through Harvard Medical School. I cant tell you what the heck he was thinking, but he wasn’t using that high “IQ.”

I absolutely “HATE” saying Chronic Fatigue Syndrome.

I absolutely “HATE” “THAT” “NAME.”

I cringe when I have to say “THAT NAME.”

It takes a lot of patience having to say “THAT NAME.”

Have you ever really thought about how much patience
it takes to be a patient?

I found it took less patience being a nurse than it does a patient. Especially being a patient with a misunderstood, controversial illness.

Its 2014, and we have “controversial” and “misunderstood” illnesses! Who would think that in the year 2014, that would be the case. I thought by now we would have medication. etc..
Forget about medication, we don’t even have research funding, the patients have to raise the money to get any funding for research!

I knew there could be a day that an illness may become part of the picture later on in life that could change things, but not having to not only stop working at 30 years old, but also having something that would be considered a “controversial” and “misunderstood” illness. It boggles my mind just thinking about it, and that was 20 years ago.

It also takes patience having to tell people that your illness is called M.E. because most people will ask you what M.E. is.
When the person you are talking to you asks you what M.E. is, “THAT” other “NAME” always ends up in the conversation. When “THAT” other “NAME” is in the conversation, you know by the look on the persons face if they already have an opinion about “That” other “NAME.” As we know, it takes patience having to be nice pretending you aren’t seeing that look on the persons face!

Then, if the person isn’t familiar with your symptoms, and you have to explain one or more of the symptoms, again, that make you want to pull your hair out of your head, again, it really takes a lot of patience to do that.

When I worked as a nurse, I could explain things over and over all day because I loved what I was doing, I really loved taking care of patients and I had patience with my patients.
When life changed and life went to the other side of the stretcher, that type of patience did not exist anymore.

I would’ve never even dreamed of telling a patient their illness didn’t exist or their illness was “All In Their Head.” I was not one of those nurses and I don’t remember any of the nurses I worked with being one of those nurses, I actually never heard of one of those nurses or doctors for that matter.

I believed my patients with no question. I especially believed them, if one of them told me something like (which actually happened), “i’m an alcoholic, i’m afraid i’m going to go into D.T.’s. You better believe I believed them, and went right to the doctors and told them to prescribe the medication before that would happen because the patient had already been there 3 days, there wasn’t much time left before that could happen. I also didn’t want that patient going into D.T.’s on my time.

Unfortunately, I feel I have to apologize profusely for people who I once called my colleagues, who actually do that to people. They tell patients “its all in your head.” That’s such a lack of respect, its actually abuse, and quite frankly, those practitioners should be ashamed of themselves.

Patients feel so defeated after hearing those words “its all in your head.” Many patients will end up walking away, will not contact the medical board because they they think the medical board will not believe them either.

Talking about colleagues, doctors would be considered colleagues, and what boggles my mind is what many of these “newer” colleagues are being taught in medical school, and what they actually say to patients.

When I started this rodeo of being on the other side of the stretcher, doctors I worked with actually knew what the illness was, or heard about the illness, because the illness had been getting media attention, and there seemed to be so many patients in the New York area that were medical people. There were doctors who said to me, “oh no, you have that,” oh how terrible, i’m so sorry. A nurse that I worked with actually said, I don’t know how you do it, “I would slit my wrists.”

There was one time, about 9 years ago, I thought I was going to lose my patience with a doctor. It took much patience to sit there and remain calm. I had bronchitis and I couldn’t drive the hour and 10 minutes it takes to get to my doctor who treats me. I went to a local doctor, figuring, well, its bronchitis, I will go there, the doctor will listen to my lungs, etc.. write the prescription for the medications, and that would be it…..

Well….

I never met someone who was as rude as this doctor was. I had met rude doctors before, when I worked, but they were rude to the nurses, they were not rude to the patients. I was also caught by surprised, I was so stunned, I felt myself sitting there with my mouth opened not believing what I was actually hearing, because I never saw a doctor talk to a patient the way that doctor was talking to me.

When this doctor, “Dr. G.,” who happened to be a female doctor, walked in, was pushing a mayo stand (a small table used in the operating room), with a laptop on it, looking at the laptop screen. She pushed that mayo stand until she was a few feet away from me. She didn’t even say hello, i’m Dr. So and So, how are you today…

No….

The first words out of her mouth were, while she was still looking at the laptop screen was:

“There is no such thing as Chronic Fatigue Syndrome”.

“Chronic Fatigue Syndrome is depression.”

“Who is your doctor?”

“Is your doctor an internist?”

“If your doctor is an internist, medicare is not going to pay me.”

“You should’ve went to my friend Dr. B. down the road at the urgent care center.”

“Who filled out your disability papers, how interesting that someone filled out disability papers.”

“You have fibromyalgia too, I make my fibromyalgia patients exercise.”

I was so stunned, I was speechless, I had never had an experience like that. I couldn’t believe it. Not only that, she didn’t even take my blood pressure, no physical exam, etc. She did listened to 2 breaths of each lung with her stethoscope, then stated, “Not Bad,” wrote a prescription for Robitussin and Codeine, and that was the extent of the appointment.

She was also younger than me, and I must confess,
I really wanted to slap her because she sounded
like a wise mouth teenager.

My own kids never even talked to me like that doctor talked to me!

I have to say, it took a lot of patience being a patient,
when I was sitting in that room.

I walked out of that office, got into my car, sat there, and didn’t really know what hit me.

4 days later, after having a 105 degree fever during the night, was coughing, was short of breath, I did go to her friend “Dr. B.” at the urgent care center down the road.

I will say, “Dr. B.” was so kind. The first thing “Dr. B.” said to me was “what meds are you taking for your fibromyalgia?” “Dr. B.” also proceeded to do a physical exam. “Dr. B.” then wrote prescriptions for the medications that “Dr. G.” should’ve written 4 days previously.

God Bless Dr. B.!!!!!!

When I decided to contact the medical board about Dr. G., Dr. G. had actually left the State of Florida and is living in another country. Her medical license was listed as “null and moot.” I thought, just as well, I probably wasn’t the only patient who experienced the “Dr. G. experience.”

It definitely takes “patience” being a “patient” today, in the year 2014, of one of the many misunderstood and controversial illnesses, because unfortunately, medical schools are teaching the students the false doctrine of “Its All In Your Head.”

Like I said, it takes “patience,” being a “patient.”

“The Other Side Of The Stretcher” (C) 2014

 

This blog is not for medical advice.
For medical advice, you must speak with your physician!