Posts filed under ‘health’
The day war was declared- your Nana, a survivor of living history,remembers that Sunday well like it was yesterday.
It was one of those defining moments in life. A war, that saw your grandfather have his youth , innocence and joie de vivre ripped from his being , not to ever fully come back to him.
Their young lives changed forever by a few words spoken on that September 3rd .
Your life was changed forever and ended by words – you have cancer
I know that I have changed but I hadn’t realized how much. Last month a gift- a VHS tape – found on the floor of the garage-
Your dad brought in the bag of VHS tapes and started to play them. There you were, once again, your childhood played out in the pool, on the soccer field , rowing boats , Christmas morning, skiing laughing and loving with us
I still can’t watch most of the tapes , it is like trying to breathe underwater. Looking at the dance tape of Nikki with Braedyn and Gavin – little Braedyn glued to the screen as his mummy danced, Gavin telling his mummy – you are beautiful
I saw myself , the MC of the event taking center stage – I was so confident, knowledgable , open to the audience , carefree, laughing, smiling and welcoming. I saw myself in a swimming pool with our family, your sister and friends racing the lengths of the pool , the music of laughter rang once more in this house as the tape played and those voices of summer came back from the past. .
And then a Christmas morning , the living room which held so many Christmases, your Nana and I sitting on the couch surrounded by presents , the noise, everyone talking at once, the puppy – that was Sheena , the paper wrapping making a pile in the center for Sheena to attack. What struck home with me was the laughter and conversation in which Nana and I were engaged. We didn’t stop talking and laughing – I was confident enough to make a complete fool of myself with the most horrendous pair of earrings. I still have those damned earrings , but I no longer have you or the me that I was.
I knew I lost ME when you got cancer and died- but I hadn’t realized how much of me I had lost . I was looking at another person, not recognizing her at all anymore. She died too and I grieve for the faces of life caught in a web of video. I grieved for the loss of laughter, happiness and confidence. I am so different , no longer the daughter, wife, mother , friend and neighbor of before.
I am reminded by the collage that will play such an integral part of the book I am writing “of you”
Confidence Gone- I opened up to you and my lack thereof – in Texas on another September day as you wrestled with cancer and untruths- set in a holiday setting of palm trees and sparkling waters – I spoke to you that day – unsure…
You see when a son marries he brings into his life another woman- it is very difficult in the best of circumstances for a mother to sit back and watch decisions being made that in some cases I did not agree with in a normal situation- this terrible situation we find ourselves all thrust into makes it doubly hard. But I have deferred to you both and to her “medical expertise” with this obscenity of Hodgkin’s that has engulfed us. It has been one of the hardest things in the world for me not to interfere or to put in my two cents. There have been times Chris, when I have doubted my own abilities and lost confidence in myself – I have gone against my own gut feelings and yet there is a voice that tells me to still be protective of you .
and so I continue – no longer me – no longer with hope, no longer belief in a greater all knowing supreme being, no longer happy, welcoming and confident just a transparent shell of before…. whose smile only surfaces when two little boys break through the endless night of losing you…….. the other self
A couple of months ago I watched a television program on
past lives and regression therapy.
Being the cynic that I am , I looked at the show with more than a hint of skepticism. In ALL things I look at the “agenda” who profits from promoting “health” – “beliefs” from organized religions of the world to those that can talk to the dead and those that can say we are reincarnated. As I reach my sell by date in this life I suppose I will find out the truth soon enough ;)
However, curiosity got the better of me , I decided to try this regression therapy- after all I pride myself in not being a follower, having some intelligence , not easily fooled. I also wondered IF hypnotism would work – maybe I could change the habit of “food for comfort” !
I spent a few days researching those practitioners within a reasonable driving distance who had certain qualifications – one being clinical psychologists who would allow the session to taped and also witnessed. I found half a dozen that fit most of the criteria but only one ( who happened to be the most reasonable – this does not come cheap) the closest and also the ONLY one who allowed the taping and the witness. That was the deciding factor for me ! I was going to see a complete stranger on their turf. I wanted one of my own with me . I didn’t want to end up barking like a dog at the next council meeting if someone gave a trigger word.
Purposely , I did not research what it is like to be hypnotized, what happens, regression techniques, or relaxation techniques. I did not want to go to the session with any preconceived ideas planted in my brain.
I took my daughter with me and our trusty tape recorder and for once a “purposely” open mind .
Would I really find out it I had lived before? Would THIS life and the tragedy that befell me and mine with the losing of my son finally make any sense? Because none of it in this life time makes any sense to me, not the faith-based religions, not the medical diagnosis and subsequent explanations which amounted to a “shoulder shrug” or the crassness experienced by those that supposed to love. Would I find out from a previous existence what I had done?
Answers, we spend our life looking for answers to questions of the unknown, looking for logic where there is none. Humankind, desperate to find out we are somehow “special” – more so than the other inhabitants both vegetable and animal of this planet who come into being, live, feed, procreate and die leaving another generation to carry on. What makes us so special to think there is a plan” for us? We certainly haven’t learned much from all the teachings in the books of organized religions. Thinking that maybe I WAS “special” and there was a plan, a reason for this gutting pain that would ,at last make, some sense.
Had I done something in my past life that now revisted me in kind in this? Was I supposed to right a wrong or deal with the cretans in this life I had neglected so to do in a past life? Some sort of Karma ?
Karma is a Sanskrit word from the root “Kri” to do or to make and simply means “action.” It operates in the universe as the continuous chain reaction of cause and effect. It is not only confined to causation in the physical sense but also it has moral implications. “A good cause, a good effect; a bad cause a bad effect” is a common saying. In this sense karma is a moral law.
Now human beings are constantly giving off physical and spiritual forces in all directions. In physics we learn that no energy is ever lost; only that it changes form. This is the common law of conservation of energy. Similarly, spiritual and mental action is never lost. It is transformed. Thus Karma is the law of the conservation of moral energy.
By actions, thoughts, and words, man is releasing spiritual energy to the universe and he is in turn affected by influences coming in his direction. Man is therefore the sender and receiver of all these influences. The entire circumstances surrounding him is his karma.
With each action-influence he sends out and at the same time, receives, he is changing. This changing personality and the world he lives in, constitute the totality of his karma.
Karma should not be confused with fate. Fate is the notion that man’s life is preplanned for him by some external power, and he has no control over his destiny. Karma on the other hand, can be changed. Because man is a conscious being he can be aware of his karma and thus strive to change the course of events. In the Dhammapada we find the following words, “All that we are is a result of what we have thought, it is founded on our thoughts and made up of our thoughts.”
The first part of the session which lasted over two hours, was a getting to know each other and explanations of what would be happening to me as I went through the process. The do’s and don’ts and also the “why” I wanted this session. I was completely open and relaxed……
The following links explain pretty much what I was told in the beginning of the session
I was told- I would be aware of my immediate surroundings, I would hear the “outside noises etc” and so we began
……. To be continued……….
Every single day this blog receives searches looking for answers and information on Humira and other auto- immune medications. The information on this blog has been garnered not from the medical community, the drug sales force, the commercials but from the mothers of those who are the faces of the “black box warning” .
– No one wants another mother to share their pain. Graciously in the midst of their own suffering they have answered emails sent through this blog and elsewhere to advise from their own personal experience- the following is one such response to those that search.
You are right to look for information about Humira, and any other kind of powerful auto-immune medication–and there are several on the market today of similar biological make-up. In addition, there are other drugs that are frequently prescribed in combination with these auto-immune drugs (a protocol called recombinent drug therapy) which when taken together, can have additional serious (deadly) adverse side effects. All of these meds are/can be very, very dangerous, but every situation and individual is different.
If you are concerned, it will be entirely up to you and/or your family to do the appropriate research before you make a decision one way or another to take these kinds of medications.
Please, DO NOT waste your time contacting the sales reps for the drug company. They do not know, and WILL NOT tell you anything even if they do. They are not research scientists, doctors, or experts in anything except how to sell a product and make a commission.
Unfortunately, it is probable that your doctor will not know much more since they, too, purchase the meds from these same salespeople. Nor can you assume or expect a pharmacist to know any more about the dangers of these drugs than what is included in the package insert they dispense. The bottom line is no one can give you information unless it has first been provided by the drug companies and this is precisely why we are in such trouble.
I strongly suggest that you do as much research as possible about any auto-immune medication being prescribed for whatever your particular condition might be. Humira and other similar medications can be, and are used safely by thousands of people, but not everyone.
You may be fine with this medication, but it would probably still be a good idea to
1. find another one or two doctors for second or third opinions.
2. Ask as many questions as you can about length of treatment and expected outcome.
3.You should also go online to the FDA website for information about Humira (and other auto-immune drugs) and look for material specifically regarding adverse events. You need definitely to do this, if you do nothing else.
Any information about dangerous side effects for these drugs will be listed there. You will not be able to get this information in any format that is intelligible, providing you can even find it, on the label.
It is interesting to note as well, that Canada’s equivalent of the FDA is often years ahead of the U.S. in terms of issuing safety warnings for a variety of drugs that are freely prescribed in this country without a second thought. I would suggest that anyone with concerns check Canada’s governmental health website.
Also, here are two excellent websites.
Do a thorough search of your condition and its drug treatment in the professional medical journals. I cannot stress this enough. This means you will need the help of a librarian, possibly at a University, school, or hospital who will have electronic access to a wide range of peer-reviewed serials and/or medical databases that you will not be able to find online on your own. This is important because a lot of what you can locate through a Google Search will not include the kind of information you will find in peer-reviewed medical journals—which are ONLY available at a medical (hospital) or university library. And it is this specific information you want.
The important thing is not to panic. Do your homework and don’t rush into anything before you feel as comfortable as possible with your decision. Our sorrow is a result of not being fully informed (warned) in advance of the dangers associated with these meds–because the information was not made available either to the general public or prescribing physicians until years after my boy died.
The bottom line really is ask questions about everything, do your research and if you feel uncomfortable with any kind of vague response…be cautious. Ultimately, you will have to make a decision, but an informed decision is absolutely necessary.
Consider all possibilities, including NOT taking a drug and what that might mean for you as well. Sometimes, horrible things happen regardless of how much you know and the most carefully considered decision. Sometimes, all that we can do, and have done, is not enough. Sometimes, there is no other choice–taking a particular medication is the lesser of two evils (disease vs. treatment). But, there is everything to be gained by being fully informed about ALL possibilities/options before you put yourself or a loved one at risk.
Two years ago I wrote the following post as part of a series on drugs and Doctors. I have been unable to write further about my own medical journey on the cancer road that dead ended with he loss of my son. I receive searches every day on Humira – nothing has changed not the commercials or the hype -it is time once again to remember those of the black box warning ……
UPDATE: The latest FDA information on the drugs mentioned can be found here
As I stated in Part two – reliving the journey of my experience with Doctors/ hospitals – the medical profession and what ultimately became our tragedy in the loss of my son - Christopher Ritchey – I knew writing the series was going to emotionally take me to places I may not be strong enough to go . So, like a marathon runner in training to get to the main event, I decided to start at the beginning of my experiences hence my memories of a three-year old.
During the course of my journey of grief at the loss of my son I have met so many people , especially mothers, who share my road. I was introduced to Joanne Cacciatore, PhD and her blog where “those in part of the “healing profession , are trying to pigeon-hole and make grief just another disease to take a pill”
and move on. Some of the drugs prescribed for this “illness of grief” can be found here : http://www.drugs.com/condition/depression.html
Depression is big business for the drug companies- I “STRONGLY” suggest you check and see the side effects of these drugs- but Hey! not to worry if you suffer a few – that is OK – I am sure Doctor MD/DO will have another drug in his repertoire to counteract those symptoms and so it goes…..
All types of media from print to electronic now bombard you with “cures for your ills”
Ask your Dr. about XYZ drug – you can live a normal life – just ask him/her about OUR drug.
The snake oil salesmen of the 21st century meet our with our need to hope and be well and we rush to their call with our little insurance cards in hand –
I have watched the commercial, as probably you have ( the commerce drug of the moment- this drug in the billions of dollars – bigger than some country’s budgets ) HUMIRA for many months and any of number of times a night. I have noted the voice over of the side effects- can cause . Lymphoma/ Cancer Tuberculosis ( this is a CURE!!!!!”) and HOW MANY SERIOUS SIDE EFFECTS HAPPENED? I walked the path of the Curable Lymphoma – Hodgkin’s
Why would anyone take this drug ? from their own website
Important Safety Information About HUMIRA® (adalimumab)1
HUMIRA is a TNF blocker medicine that can lower the ability of your immune system to fight infections. You should not start taking HUMIRA if you have any kind of infection unless your doctor says it is okay.
ED NOTE: OH OK so according to Humira we put our trust in our Doctor- how many Dr’s ( I bet yours is ) are part of the pharmaceutical sales onslaught- you have seen them with their suits and cases as you wait in the world’s waiting rooms for your turn with the Good?? Dr.
From the Princeton Review – emphasis mine
Pharmaceutical sales is a fast-paced, high-turnover business that rewards assertiveness, persistence, and knowledge. Pharmaceutical sales representatives spend most of their business time on the road, talking with pharmacists, hospital personnel, physicians, patient advocacy groups, and even retirement homes, increasing the visibility of their company’s products and the volume of their sales. “Sell sell sell learn learn learn sell sell sell,” wrote one sales rep, who included his business card with his survey, in case we wanted to purchase any pharmaceutical supplies………………
………..For many, a significant portion of their income is riding on their ability to get the product into the hands of the consumer. So, why is this job so addictive? Perhaps because the “EXCESSIVE PROFIT MARGINS” of many brand-name pharmaceutical products can mean enormous commissions
and for your further reading -
Confessions of a Pharmaceutical Sales Rep
•Serious infections have happened in people taking HUMIRA. These serious infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some people have died from these infections. Your doctor should test you for TB before starting HUMIRA, and check you closely for signs and symptoms of TB during treatment with HUMIRA. If your doctor feels you are at risk, you may be treated with medicine for TB.
•Cancer. For children and adults taking TNF blockers, including HUMIRA, the chance of getting lymphoma or other cancers may increase. There have been cases of unusual cancers in children, teenagers, and young adults using TNF blockers. Some people have developed a rare type of cancer called hepatosplenic T-cell lymphoma. This type of cancer often results in death. If using TNF blockers including HUMIRA, your chance of getting two types of skin cancer (basal cell and squamous cell) may increase. These types are generally not life-threatening if treated; tell your doctor if you have a bump or open sore that doesn’t heal.
During my journey, I have met on-line the mother of one of the “SOME PEOPLE”- a mother who trusted – who put the most important person in her life – her child- her son into the hands of the snake oil salesmen – they trusted their medical practitioner to help her son.
This is the face of “SOME people” – he is the reason there is a disclaimer- his life given – His name is Maxx Wendell- a young man with an oh so bright future- a young man full of life, humour and love. WE should all pay attention – because we are the “people” who may also end up as disclaimer as the money rolls in .
His mother, Lisa, wrote a comment on this blog which I have reprised below. Lisa fights through her grief and terror so that no other mother has to walk the path of “induced death” – the some people side effect of this drug . As you look at the side effects of any drug and see some cases , some instances, some deaths remember there is a face behind those side effects who have paid the ultimate price for pharmaceutical profits- Lisa Wendell and her family are “some people”:
For those who read your blog, I am the mom of the son who was prescribed a combination of immunosuppressive medications (what are called biologic TNF blockers) to keep his ulcerative colitis, a non-life threatening chronic autoimmune disease in remission. As a result, Maxx developed Hepatosplenic T-Cell Lymphoma, an aggressive, deadly cancer that killed him in 17 weeks. He was 21.
We were NOT informed of the dangers of this drug precisely because the makers of the drugs (Johnson and Johnson/Centocor and Abbott) had not yet labeled the medication with Black Box warnings advising of the 6 fold increase in risk for this disease in a pediatric population of young men between the ages of 17 and 24. In fact, we were specifically told that the risks for any serious side-effects, including Lymphoma were so low as to be virtually the same occurring in the general population. The combination of the doctor’s ignorance/arrogance and the out and out cover up by the drug industries of deadly side effects (levels of corruption that are unimaginable and occurring across the board all the time with regard to all drugs) killed our boy. Thousands of people a year lose their lives so drug companies can reap profits we can scarcely imagine.
One of the drugs, Remicade, was labeled shortly before he became ill. By that time he was no longer taking Remicade but had been prescribed another medication, Humira, with a different “delivery system” (self-injectible vs. infusion) that was supposed to have a better “safety profile.” Essentially, all this turned out to mean was that the Black Box warning had not yet been required on Humira. As of April, 2011 Humira now carries this warning as well.
In the meantime, my son is dead. Doctors are still prescribing these medications to people with a variety of autoimmune disorders including Rheumatoid Arthritis, Chron’s, Ulcerative Colitis, and refactory cases of Psoriasis. In the four years since Maxx died, another 41 people have been reported to have died from HSTCL.
We cannot know if they were ever told by their physicians of the dangers, however, we were not informed. We did not consent to taking any risks. Never. We would never have taken such a risk with Maxx’s life. We asked repeatedly about the safety of both Remicade and Humira and were always told the same thing. The drugs are safe. The real information was supressed. Deliberately and for as long as possible to allow the drug makers literally years to make billions. Humira is one the top three selling money making drugs on the market for its manufacturer. What are 40 deaths when compared to billions? The true story’s behind drug company cover ups, lies,marketing scams, and greed are now common knowledge.
I will talk to anyone who is interested in knowing more about Maxx’s story and I welcome contact with other parents who have lost children to medical “fraud” and terminal disease.
I also urge anyone taking drugs for any chronic condition to thoroughly research the medications you or a loved one have been prescribed. Keep reading, keep asking, keep pestering, never stop. Keep fighting to get the information you need to make an informed decision. Our family is not stupid. Maxx was brilliant. We were duped. He lost his life, and I lost my heart
Only those of us who have walked the path of such utter confusion in the medical maze and have lost our reasons for being know how gut wrenching and brave it is for Lisa to write of her journey- she is still giving in the name of her son – and trying to save others from the depair and terrible agony of such a loss- my heart and “knowing” are with her….. LISTEN to Lisa …….. we could all end up as the legal disclaimer one day as one of the ………. “SOME people”
Strength to continue…… No! the mothers, who mourn their child, don’t really continue or for that matter to “move on”- they pull and drag themselves through each day and into the next- fragmented and yet never becoming “whole” again. We have crutches , we have game faces, we have tricks to stay the course of continuing. The grief can numb you and yet rip you to pieces in an instant. The cohesiveness of you, my son, is no longer there the hold my heart and soul together.
I dread these days of memory:
and yet I relive those last days of your life over and over and over again daily. So why the dread of facing another December 3rd? December 3rd is just another day where I am holding my breath , trying to hold back the rush of tears, fighting to stay upright and the longing for this to be a nightmare from which I will wake.
The very nature of its coming- December 3rd brings with it such an intensity of emotions that I know will cause me to flood my pillow with tears and tear at the fabric of stillness that is night with my sobbing. The dull chronic pain I live with everyday becomes a shrieking, stabbing coldness of spirit permeating every thought, every fiber of my being. I am lost to comfort.
Recently, I was asked to participate in a “grief project” for an Arizona university. The project, as I understand it, will be presented this week. Basically the gist was how grieving parents memorialize their “lost” children .
The last question asked as I filled out the projects questions is as follows:
Please use the space below to share any other important information about your child………
Our lives changed so much the day my son died. Every moment from the time of diagnosis to his death is as fresh in our minds as if it were yesterday. There is a sort of parallel world we walk in the present – we are physically here but at the same time elsewhere in a world of horror and hope- the obscenity that is cancer will do that to you.
Watching your son lose his grip on life day after day week after week, the tests and finally helplessly watching him slip away hooked up to machines being unable to fulfill the promises parents make.
The guilt of surviving, the questioning of WHY, the deals you did in your head and out loud to a “being or entity” that ignored – realizing you are alone – for all the platitudes foisted upon you ” the God’s plan” the better place .. The people who do not have the words to comfort- how could they – trot out inane phrases – you know they mean well but they just add to the anger, because there is anger .
You don’t move on, at least we don’t, we continue , we love our daughter, son in law and grandchildren – they give us laughter and strength but always lingering on the peripheral of life is the “missing of memories that should have been” . There will never be total happiness in our lives – there can’t be. Maybe it would have been easier with the crutch of an organized religion to support one- I don’t know- it is Chris that comforts – his smile – his
his humor his thoughts as they are expressed in the works he left with us…………
Childhood living is easy to do
The things you wanted I bought them for you
Graceless lady you know who I am
You know I can’t let you slide through my hands
Wild horses couldn’t drag me away
Wild, wild horses, couldn’t drag me away
I watched you suffer a dull aching pain
Now you decided to show me the same
No sweeping exits or offstage lines
Could make me feel bitter or treat you unkind
Wild horses couldn’t drag me away
Wild horses couldn’t drag me away
Wild horses couldn’t drag me away
Wild horses couldn’t drag me away
Wild horses we will ride them someday
Wild horses, wild horses
A lot of us , at least one in three, have had to deal with someone in our immediate family having cancer- it is an obscenity! We have watched as loved ones have been hooked up to innocuous looking IV’s – bland liquid – belaying the fact they are full of poisons . The tip-off to their danger could be the way the nurses etc dress when they administer the noxious cocktail.
17% of cancer nurses unintentionally exposed to chemotherapy, U-M study finds
Researchers stress importance of implementing nurse safety measures around these highly toxic drugs
Unintentional chemotherapy exposure can affect the nervous system, impair the reproductive system and bring an increased risk of developing blood cancers in the future, the researchers said. These exposures are as dangerous to a nurse’s health as being accidentally stuck with a needle, the researchers said.
I still can see my son hooked up to the IV’s pumping poison into his body- Why would anyone knowingly put their child in such a terrible place? To save his life and that is why millions of people all over this world subject themselves to the poisons of a hopeful cure. It is a trade-off because although the poisons kill the good cells they hopefully kill the cancer. It is a trade-off cure or be killed. You make that decision.
However with drugs that tout ” possible remission” – such as Humira – they are being touted for non – life threatening conditions-
Humira (adalimumab) is a TNF inhibitor approved for the treatment of rheumatoid arthritis, chronic plaque psoriasis, Crohn’s disease, ankylosing spondylitis, psoriatic arthritis, and polyarticular juvenile idiopathic arthritis. Humira is used for pain relief and to reduce inflammation in a number of autoimmune diseases.
On Jul, 16, 2013: 130,505 people reported to have side effects when taking Humira. Among them, 1,024 people (0.78%) have Death.
The reason for the last two posts came to this blog in the form of a comment Wendy was looking for help and information :
I have been on Humira for 18 months now and have now decided to stop injecting it. Four months ago I was diagnosed with multiple pulmonary Embolism in both lungs. I was cycling 150km a week and very fit. I am still in extreme pain though my clots have dissolved from Warfarin therapy. No one can tell why I am in so much pain and also will not suggest that it may be the Humira. It seems that this wonder drug has caused a life threatening condition for me with no answers from anyone. So, I will discontinue treatment and see if I improve. I only hope that I have not developed long-term damage to my body that can not be reversed.
I contacted Lisa and others who have suffered untold pain with the deaths of their loved ones – and the “ MINIMALIZATION MANTRA” of those in the “healing business” and asked for their help in answering Wendy – From a mum who also lost her son to the Minimalization Mantra
If you decide to take Humira, or any other similar immune suppressant drug, make sure you have monthly blood work done. If there is any abnormal result, ask to be tested specifically for hstcl. It takes a specific test to identify it.
hepatosplenic t-cell lymphoma mostly/usually results in death (vs often). It is very rare to survive it.
Yes, the Humira ads/pamphlets make the side effects sound like no big deal – easy to take care of. Sickening. Rob didn’t take Humira, but was on Imuran/Azathioprine, another immune suppressor. We were told it was the thing to take, no big deal, no checking blood counts regularly. And no one tested for hstcl until he was critical – even though I told every doctor we saw that he was on Imuran for uc(ulcerative colitis). Even his GI didn’t get it. “It is so rare.” Only because there is no required reporting… so how would they know.
As the mother of Maxx Wendell, the boy whose story about Humira appears on Loraine’s blog,
I’d like to offer a few thoughts on the very complex nature of the patient’s experience of what it means to suffer the consequences of medical and/or pharmaceutical negligence.
There is a tendency to simplify the myriad interconnected factors that come into play when one is ill and prescribed a medication that offers either cure or, as significant, hope for one. We believe that if we do what we are advised by the professionals–our doctors– to do, if we follow the rules, we will reap the eventual reward– a return to health and well being. If we do not….then we are responsible for what may occur as a result of a failure to comply.
Essentially, as patients we are almost goaded (and what choice, really do we have to do otherwise?) into placing our trust, our lives, into the hands of those who, according to those rules, are equipped to know what is best for us. When everything works, we consider ourselves to have done “the right thing.” We are grateful to our doctors, we pride ourselves on our intelligence to have located the best practitioner-“expert”, we are gratified in ways that only the once ill, now recovered can be.
But, just as often, everything doesn’t work. Just as often, everything not only fails to work, but breaks apart slowly, horrifically, unimaginably into irretrievable bits no matter our commitment or compliance. No matter the “evidence-based science.”
It is never simple to be ill, to be diagnosed with a disease or condition that requires immediate attention and/or a protocol for managing a long-term chronic situation, but because we live in a time when science and technology are packaged (to the tune of billions of profit dollars) to offer the promise of a long-lived, disease-free life we cannot help but trust in the illusion that this is always possible. And for some it is.
For millions of others, however, it is not. And when it becomes clear that “science” can’t save or help us, as patients we become failures. On every level. Regardless of what we did, or how hard we fought, how many questions we asked, how intelligent we believed we and/or are doctors were, we failed. We are sick, we will stay sick, and many of us will die. When that happens, we cannot help but look for people, situations, circumstances to blame.
Frequently, there are no identifiable causes. But just as frequently there are–and particularly so whenever drugs are involved. Maxx died from Hepatosplenic T-Cell Lymphoma only because of the drugs he took, only because, despite available scientific knowledge and evidence known as early as 2002, the pharmaceutical companies in concert with a profit-compromised, inefficient FDA did not make the information we needed to keep him from ever becoming ill in the first place available in time to do so. Maxx died in 2007.
Of the three drugs he took for years in the manner they were prescribed and about which deadly side-effects were known, but discounted as “statistically insignificant,” one did not receive a Black Box warning until 2008 another in 2012, and one other not at all.
Millions of people take drugs that will either help, or possibly kill them. Millions of people have died from medications that have turned out to be potentially deadly and about which this was known. It happens every day.
Ultimately, this reality, however disturbing, however tragic, means little in terms of helping those who are suffering or dying to answer the questions, “What now?”
When we are sick, we will go to a doctor and we will be told to do something, take something, have a procedure. We will have to make a choice but we must understand that our choices will not, cannot, ever really be based upon full disclosure because there is no such thing. Whether intentionally or not, we can never know everything there is to know about what we most need to understand–how or IF it is possible to recapture and maintain our health, or if our choice to comply may indeed have deadly implications. We cannot know because we ARE NOT TOLD.
What happened to Maxx is not just about Humira, or any of the drugs he was prescribed, although many, if not most, are reading this site searching for information about this particular drug. What befell my son is a tragedy, but his is not a new story.
It is the same story that involves the same decision-making process and similar risks, for millions of others who must take medication. The Gordion Knot is this: No matter how hard we may look for answers we can never be advised fully of any risk in all its possible permutations. And it is this that we must understand in the very beginning; this that must also be a crucial component of the decision-making process—that the possibility for utter annihilation lurks within every choice that as patients we may make.
We must simply assume on the face of it that we only see the tip of the iceberg–that below the surface there is much more that may prove catastrophic. And most importantly, we, as patients, are not to blame, we are not at fault. We do the best we can given the fact that we are all only ever provided with the favorable, positive information the drug companies are eager to release.
Had we known that these drugs harbored even a 00000000000000.1% chance that patients in a population of young men between the ages of 16 and 32 could develop a terminal cancer as a “side effect,” he would not have taken the drug. We did not know this and we DID ask again and again for years. “What are the risks? What are the most serious side effects? How long does he have to take these drugs?”
And the answers were always the same–
any risk for incurring dangerous (not to mention, deadly) side-effects are miniscule and the benefit of the medication outweighed any dangers.
What few studies that did exist about the deadly implications of recombinant immuno-suppressive drug therapy in young adolescent males with ulcerative colitis WERE NOT RELEASED either to doctors or the general public. Should we have assumed that what we did not know, even in our wildest imaginings was just as likely to destroy our lives, to kill him, as not? At what point does the term “patient input” become an absurd joke?
This is the bottom line, what patients MUST understand before they take any medication: Whatever the condition, whatever the drug, whatever the situation, you can be certain that some professional somewhere, a so-called an expert, a drug company’s scientific research team, has or is deliberately suppressing life-saving information and someone, somewhere in a pharmaceutical marketing department is working hard to package and present only partial truths, pieces of a clinical reality, that may or may not have disastrous consequences for yourself or those you love most in the world.
The worst CAN and does happen all the time. Critical information on the Internet about these drugs was not available in 2002, but access to this kind of knowledge IS available now.
Be very, very careful.
As another commenter stated- my dear friend- Paula who herself has been hooked up to the Kill or Cure IV
I found it interesting watching the ads on TV for all the meds. It’s called push/pull. Push it on the consumer, pull them into their doctors asking for it. Notice when they’re saying the fine print they have happy people having fun, living their lives and you don’t hear the warning, because that’s what you want.
Follow the money.
Paula”s story found here :
The last few days have found even my “auto pilot” the part of me that takes over in my “present life” having issues. I usually rely upon my auto pilot to see me through the days when my brain has me elsewhere in the past.
However something is amiss, I have waited to have it “clear” or like some kind of emotional pacemaker kick in . Not happening.
Pride Day, Settlers’ Watch, reading about “circumvention and diversion ” which is ripe for a post, Success for All fiasco, transparency in the hierarchy of Lorain City Schools, Cheryl Atkinson and her 76 trombones, scholarships and how Thomas the Tank Engine and the Cuyahoga Valley trip “tanked”, arson and cretins of Lorain
any number of subjects I am in a sort holding pattern
As I walked back from Settlers’ Watch last night knowing that I had a post half-finished to put up for this morning I started to feel quite unwell. I wondered
is this it? Am I done with this planet?
I wasn’t too concerned, I admit it, after all I had had shower and clean underwear but the thought crossed my mind if I tanked the last post on my blog would be the last thing written, my last words so to speak. Oh! I have my obituary half written – after the dreadful obit with regard to my son no other bugger is writing mine so that has to be finished so it can be the “last post” :) . I wonder if you know how weird it is to write your own obit?
People eating and laughing and sharing news of the day in the ICU waiting rooms whilst waiting for my son’s last breath left me disgusted and full of anger. The Gypsy Caravan that attended my son’s last days was to me abhorrent and tasteless and not of my culture or his and robbed death of dignity .
I read his Obituary on Saturday in the local paper. Was this my wonderful young man whose life was put into so many cents a line? Was this MY Chris – I could not let that be the last words written about my son so I have composed a letter which I hope will be a more fitting epitaph to one whose passing has broken a mother’s, father’s and sister’s heart.The Unbearable Pain of Being