Sights might be off

Just a thought I’ve been pondering for the last year and a half.

Are we treating autoimmune disease at the wrong point of the disease process?

The treatment for the heavy duty (life threatening) autoimmune diseases involves beating down the adaptive immune system (B and T cells) with chemotherapy, biologics, immune suppressing drugs, and steroids. By doing this we bring a lot of risk into the mix and often the risk of treatment for the disease is on par with the risk of the disease itself.

The thoughts that have been swirling in my head, particularly last year while I fought with insurance and had to wait way too long to get my treatment (a treatment that costs over $12,000 and is the ONLY available treatment for me to stop a major flare – and keep in mind that a flare with Wegener’s is not what other people with autoimmune disease describe a flare as – with Wegener’s a flare is systemic, and can turn deadly within days, it’s not sore joints, or ‘I’m not feeling well today’ kind of thing.) On my last flare I got the usual granulomas throughout my lungs (scarring that litters the lungs and in my first round was misdiagnosed as terminal lung cancer) but I also had a few perforating lesions in my lungs (holes – one of them 3cm in diameter) and then just to add some fun to the game, I got significant Pulmonary Embolism that littered my lungs with blood clots. There wasn’t a lot of room for oxygen in my lungs last year, so I sat around a lot, sucking on oxygen, and thinking about solutions.

This is when I thought about the innate immune system. This is our first line of defence. This is where things get messed up in the first place, and we are not looking at what aspect of this initial response needs a fix. It could be the chemical messages that cells leave behind for the immune system to trigger a response. It could be those epithelial cells that are reading the mail all wrong. There are so very many steps that take place before our adaptive immune system comes into play, and eventually gets punished by chemo, ablated by biologics, and beaten down by pred. But the adaptive immune system is a player that becomes involved long after the initial onset of things going wrong. Also by ablating the B cells, as is done with the biologics, we are destroying all of our history of gathering immunity. All of our vaccines gone. All of our childhood disease history and adaptation, gone. After a treatment with biologics, the patient is essentially a newborn baby with about 6-8 months of waiting for the bone marrow to just even produce a batch of new B-cells (now with no memory of your life’s accumulation of immunity.) We are like the aliens in that Tom Cruise move “War of the Worlds”.  All you gotta do is sneeze on us, and poof, you win.

Below are some questions I posed using muscle testing to distinguish truth from falsehood in my assertions. (If you want to know more, you can grab any book by Dr. David R. Hawkins and read up on his gift to humanity.)

The current treatment paradigm for autoimmune disease is on the right track.
False
Treating the adaptive immune system using immune surpassing drugs is the most efficient way to treat autoimmune disease.
False
There is a cure for autoimmune disease.
True
Looking for answers in the innate immune response is a more viable treatment option. True
Neutrophils are part of the problem.
True
Examining the process of chemotaxis would lead in a direction of new treatment and discoveries.
True
It is possible to direct chemotaxis in a way as to not compromise overall health risks. True
Endothelial disfunction is a first step in autoimmune disease process.
True
Pathology in endothelial cells is a first step in autoimmune disease.
True
A positive finding in endothelial cell pathology affects autoimmune disease, heart and stroke, cancer, and mental health.
True

Autoimmune disease, heart and stroke, mental health and cancer are related in etiological manifestation.
True

Autoimmune disease is related to excessive or prolonged permeability of the endothelial monolayer.
True

There is a connection between vascular endothelial cell, neutrophil recruitment and hormone trafficking as part of the onset of autoimmune disease.
True

The answer to autoimmune disease lies in vascular endothelial cells.
Soft True (a little weaker than the others)

The answer to autoimmune disease lies in lymphatic endothelial cells.
True
The respiratory epithelium is the underlying problem with Wegener’s Granulomatosis. True

There is a way to improve respiratory epithelium function without the use of immune suppressing drugs.
True
Simple epithelial tissue abnormalities are the problem behind AI disease.
True

IL-8 (interluken-8) protein (chemokine) disfunction is the trigger that sets off autoimmune disease.
Soft True (again weaker than the other muscle test responses, but still not the same weakness as False.)

IL-8 disfunction can be repaired using genetic manipulation.
True

Decreasing glucose intake will alter the chemotaxis that gets the neutrophils going.
True

Sugar comes into play with the question near the end of my query. Maybe the thousand(s) fold increase of sugar intake in our population (from the perspective of our evolution) could be triggering the mixed messages during chemotaxis. After all watch your kid trying to communicate with you after a slurpee or a hand full of jelly beans. It’s never good. It’s always chaotic, and often loud and nonsensical. That is autoimmune disease.

I sent this idea out to Dr. Bruce Lipton last year when I was stuck in sick-world limbo, but I never got a response from him. It’s ok though, we all ignore some emails, so I can’t hold it against him. Can’t judge someone for stuff you yourself do. Someday we’ll change our sights. Someday autoimmune diseases research will save not only autoimmune disease patients but patients with cancer, AIDS, mental health, and heart and stroke diseases, as all of these are associated with an immune system misfire. Someday we will all be healthy and productive and in the sci-fi book I’m writing on this subject, I have figured out the answer, and with that answer come some added features we couldn’t have even dreamed of. But for that, you have to wait and read the book.

 

Changing the World

For those who don’t know Dr. David Hawkins (Doc Hawk) this might be hard to swallow, but worth a consideration. Humour is his tool for helping us understand transcending levels of consciousness.

We can only change the world by changing ourselves. It all starts from inside.

I so dig Doc Hawk. I’m paying some karmic debt in a hospital bed right now, and am grateful for it because once outta here, that debt will be paid and I can move forward to raise my own levels.

Keep calm and raise on.

Last One

It’s hard to think of healing, when you’re dying all over.

It’s not easy when you’re dealing with being a ‘crossover’.

You’ve always been the ‘strong one’, or so you thought…

but now your confidence is shattered, your certainty is naught.

 

Chronic illness has this way of taking everything you are,

and making every second of every day a new and permanent scar.

 

What we forget when we are in the thick of it,

is that we have a choice.

We can pull ourselves through

when we’re finally sick of it.

 

Sick of being a victim.

Sick of searching for blame.

Sick of being a patient.

Sick of playing their game.

Sick of the boxes of pills.

Sick of reporting your ills.

 

We wait for answers from outside of ourselves,

from people on pedestals, in white lab coats and shelves.

“But they know so much more about us than we”

They make us go “Ahhh” and bang on our knee.

We give them our power, and wait…. wait and see.

We’re holding our breath for answers from folks,

mere humans like us who poo and who poke.

Yet we wait till our death.

 

The role of the victim is a powerful one,

without its powerful juice, the evening news would be none.

Without it there would be no wars, no fights, no drama,

we could just get sick and deal with the trauma.

Too many get hooked on this powerful drug,

it doesn’t come in a box, just ‘down on your luck’.

 

The answer to healing lies within,

that’s your Higher Self, that barely audible din.

It’s whispering the secret that you need to hear,

that in your life YOU’RE the puppeteer.

The answer’s within, not outside

it starts with Courage, and it ends with LOVE.

Long Time Coming

Hey friends,

It’s been a while. Life just got up and got away on me, and although feeling a little bit of guilt for not writing, I still haven’t gotten myself to do it – all kinds of excuses, but who cares about excuses because all they really are is a way to alleviate guilt.

I have to write about my newest discovery. That being Dr. David Hawkins and his body of writing.

I stumbled onto my first, his last, book in an almost mystical way that I wont go into here, but it was very much like that book wanted to be read by me. It was the jumping board that has led me into a number of his other books because I found my first, his last, so powerful and empowering. I know that different books, ideas, theories, affect us differently at different times in our lives, resonating the strongest when we are either ready for the ideas, or when we need them most. I believe that I had to go through what I went through with this autoimmune disease process to get me ready to comprehend and embrace the writing within.

I understand now that what I thought was the cause of the onset of my particular flavour of autoimmune hell, was only a small part of the problem that triggered the disease process. I understand now how many other factors were involved and how much power lies in our hands vs those of the medical profession. The medical profession is great at dealing with the acute phases of the disease process and pulling us out of the proverbial glue, but such a large part of the healing lies in our own hands, it’s unfathomable. This is a problem in that many people will choose to go the ‘lazy’ North American route of “fix me doctor with your magic pills and potions and machines that go ping” but I believe to be truly fixed, we need to do some heavy lifting inside our own minds. Heavy stuff, I know. But man oh man is it rewarding, and literally ‘enlightening’ in that you actually feel lighter when you start the process.

Ironically there are many doctors who upon feeling uncertain about a patient’s physical issues will default to telling that patient that the issues are in their heads and should maybe try some antidepressants. By sheer chance, they are partially right but for all the wrong reasons. They are right in that if one goes inside much pain can be removed, and triggering emotions can be tamed, but they are wrong to prescribe more drugs to numb the through process and assuming that your disease is ‘in your head’. My mom had a jerky female doctor who had the audacity to tell her “You’re as healthy as a horse. How can your husband stand living with your constant complaining?” Mom forbade me from calling that doctor’s office and giving her a piece of my mind, or of reporting her to the College of Physicians and Surgeons, but that doc will have her own issues to deal with in living with so much pride and jerkiness.

I will continue on the journey I’ve started from that first book of Dr. Hawkins that I read Letting Go, and I hope that you can read it and get as much as I’ve gotten out of the experience. This is a life changing book if you play around with this very easy technique to transcending levels of consciousness. Another one that is great (it does repeat itself a lot because it was taken from a series of lectures) is Healing and Recovery, which gives you an absolutely tangible technique of releasing pain on the spot. I can now get rid of headaches in about 30 seconds to a minute without any drugs. Pretty amazing since headaches are the first symptom that has plagued me since onset. I strongly believe that everyone with chronic illness needs to read these books if they want to get a handle on their lives. But we also all have to go through our own journeys of discovery and perhaps the payment of some karmic propensity that we’ve carried with us for who knows how long.

If you go into this with an open mind, an open heart, and an open soul, there is no predicting how far you will go in your healing and subsequent transcendence. I hope to go far enough to feel the non-linear existence but only time will tell.

In the meantime, get your calendars ready for March 18, 2016, when we have our FIFTH (woohooo) PJ Day to raise awareness and stand in solidarity with the millions out there dealing with this crap behind closed doors.

Peace to all.

I’ll be better at updating this blog

I haven’t been on here much but I’ve just gotten off Facebook and will have more time to put my thoughts down here without the added drama of constant bickering and distractions. I will write something thoughtful soon as I start planning our next PJ Day (2016) which will take place in the middle of Autoimmune Awareness Month.

Stay tuned and keep on fighting the good fight…. here’s to everyone’s ultimate health.

Peace and love!

Just a little analogy

It’s been a long time since my anthropology-major-brain has reared it’s curious little eyes, but it’s been weighing heavy on me of late. I’ve really been thinking about the systems in place and how they got there, and why they got there, and the more I spend time thinking about this, the less I like the answers I find.

The whole question arises from some research into iatrogenic death and disease. This is a topic that is close to me right now. Too close. I am pissed at how things have unfolded for a dear friend, and I see the gaping holes in our system that allow for this to happen.

Then it really hit me.

The analogy.

The profit driven, corporate culture that parents research, pharma, and healthcare, food, technology, is a similar systemic problem that can lead to the death of the whole exactly as autoimmune disease’s systemic, endemic nature can lead to the death of the individual if left unchecked.

Just like inside the body, we as a society have placed our trust in the protective promises of these profit driven giants, and their reach is so deep, so varied, so wide, that the negative manifestations of this systemic disease are thought to be of different origins, but are in fact all part of the same problem.

There is no money in health. Or so it is expected. This is just a theory because it hasn’t happened yet. There is an entire economy built around chronic illness. From healthcare professionals, to techs, to pharmaceutical companies, to charities, to home care programs, transportation companies, and it goes on and on and on.

Looking at the problem from this perspective makes it look completely insurmountable, but it also seemed absolutely impossible to me to be able to go for a walk with my little girl ever again when I came out of the hospital. Yet with baby steps, I was proven wrong. I think with baby steps we can absolutely rock the world. This is the age when we as a group will change the face of healthcare. Let’s do it! Got something better to do?

Are there more hypochondriacs or more Autoimmune Disease patients

I’ve been having an emotional few days. Maybe this post should be kept inside until I calm down, but I really feel like it needs to come out.

I keep talking to strong, beautiful women who are made to feel small and pathetic in their attempts to find help from the medical profession. I’ve posted before about the ‘one symptom per visit’ rule many doctor’s offices have and how they are basically negating the efforts of patients with systemic diseases seeking help. To me it’s a show of money grabbing, ego maniacs who got into the medical profession for all the wrong reasons, but I wont dwell on that today.

Many of these women, and I say women because Autoimmune Disease affects a disproportionate number of women, but there are definitely many men affected too (my disease happens to be predominately male, I’ve always been a bit of a tomboy,) are made to feel like hypochondriacs in their early attempts to find a diagnosis. So we know that Autoimmune Disease affects 1 in 5 people, but each manifestation of the disease (with a few of exceptions) is classified as RARE, so it is almost always the last thing that docs look for during a search for diagnosis of often systemic, migratory, transient symptoms. What hurt when you called to make the appointment, often has moved somewhere else by the time you actually get to see your doctor. Because we can’t pinpoint a single symptom, that stays in a single spot, and we can’t describe the feelings that come along with the symptoms including fatigue, memory loss, constant achiness, etc. we are pegged as hypochondriacs. If not to our faces, behind the scenes… but you can always feel the change of sentiment when you show up at your doctor’s office for the 10th time in 2 months. From the reception, to the referral desk to the actual medical pros. Less than a month before I was fighting for life in a hospital, I was told by the referral secretary that she didn’t put my referral through for the LAST THREE WEEKS because, and I quote “There are people that are sicker than you Marta.” This from a woman who has never seen the inside of a medical teaching institution, but she’s got the power, because she got the job at the clinic after finishing her waitressing job for a number of years. She apparently knew the level of my disease activity and made a choice to put me at the back of the line, and keep me at the back of the line.

I am curious how many people are actually hypochondriac. I imagine the number is pretty low. At least a lot lower than 20% of the population. How many people do you know who are hypochondriac? How many people do you know with an Autoimmune Disease? I would wager that you know many with the latter and none with the former. If you ask all the people you know from the latter how they were made to feel during their search for diagnosis, I bet many of them would agree that they were made to question themselves, feel belittled by the medical profession, and their self esteem was destroyed by their search for help.

I feel so blessed and lucky to have the doctor I have right now, but that came with a heavy price of feeling all the things I mentioned above. I know now, that my health is in my hands. I question everything. I know that more people die at the hands of doctors and hospitals and the worst of all, pharmaceutical companies, than any other thing. If a 747 plane full of passengers crashed every single day of the year, we would still not be at the same number of patients that die of iatrogenic causes.

Be your own best advocate, and when you have to go into an environment where you’re are seeking medical support, be as vigilant as you can possibly be.

Jasper Schedule of Events PJ Day 2014

Friday February 28, 2014

Don’t forget to Tweet or Facebook your PJ pics with #weonePJday to win a group prize worth over $3000. Winner will be drawn on March 1st.

(8:00am) Pancacke Breakfast
2nd annual PJ Day-Firefighters Pancake Breakfast sponsored by MPL – all money raised will go to MS Research. Old Fire Hall
(8:15am- 9:00am) Breakfast TV Live!
City TV’s Breakfast Television Live Morning Show Taping
Get your mug on TV and support the cause in your PJ’s.
PJ Urban Rail Jam and LIVE taping segments. Old Fire Hall
(10:00AM) PJ Fun Run with Tracy Garneau
Meet at 10:00am and start the run around 10:15. This is a short fun run so don’t chicken out.  Wild Mountain Jasper (612 Patricia Street)
(High Noon) PJ Yoga with Steph
Join Steph for a PJ Yoga Session at the River Stone Yoga Studio (606 Patricia Street)
(6:30pm – 9:00pm) PJ Street Party
Join us in your PJ’s by the Old Fire Hall and check out some Live PJ Music, some PJ Urban Rail Jammin’, a PJ Street Hockey game and other PJ fun.
(All Day) Help Wild Orchid Help Us
Wild Orchid  (616 Patricia St) has graciously offered to donate 10% of any sales (service or product) sold on Friday to Find The Common Thread Foundation. Also book on that day and be entered to win a fabulous salon & spa prize. So go get your hair did!

Saturday, March 1, 2014

(All Day) Marmot Basin Jasper
Wear your PJ’s skiing and possibly win one of many prizes from Mobil One.

2014 Jasper Schedule of Events PDF
March is Autoimmune Disease Awareness Month 2014 PDF

2014 Schedule of Events

WeOne PJ Day – The Third – February 28, 2014

Third Annual PJ Day to raise awareness, support, and funds for Autoimmune Disease as a whole, is right around the corner.

Put your PJ’s on (or just don’t get dressed in the morning). Take ‘Casual Day’ to a whole new level, while making a worthwhile stand for 20% of the population who research and medicine is leaving behind.

The issues here are endless, and you can peruse the blog to learn more (I won’t talk about it now) but we can make a difference. Together!!!!

See what we’ve done in the last couple years: https://findthecommonthread.com/pajama-day-archives/ .

Win a Marmot Basin Corporate Ski Pass or 20 Lift Tickets plus three rooms for two nights at Mountain Park Lodges and 10 Free Ski/Snowboard Rentals from Freewheel Cycle!

See how you can score some prizes by participating this year: https://findthecommonthread.com/contests/

Let your imagination flow, and come up with the best PJ Day Event Ever. Share your PJ Fun using #weonePJday on FB or Twitter.

The only way any of the 140+ Diseases we face will see a cure in our lifetime is for us to stand together.

From the very rare to the very famous, these diseases pretend to be different diseases but they’re not. Don’t let them fool you, it’s their way of keeping us all from looking for a cure in the right place.

What can you do?

So you’re reading the PJ Day prep, and wondering if you can be up in Jasper to join the festivities. You don’t have to be. In fact, the idea is that people all around the world start their own PJ Day and that is what will give us the voice and power to change status quo. Then post pictures and events on Twitter or Facebook with the hash tag #weonePJday, let’s make this a trending hash tag on February 28, 2014. Remember….

#weonePJday

Start your own PJ Day event. My biggest piece of advice here is take on something you already do, something you are so familiar with, you could do it with your eyes closed. If you teach yoga, do a PJ Yoga day, if you are a runner, organize a PJ Day run, if you are in drama, do a performance with PJ’s, do something that comes naturally and gather some friends, and just add PJ’s. If you’re a teacher, organize a PJ Day at your school. Start the discussion going. Send us your pics on Twitter or Facebook with the above hash tag.

Here’s another idea if you’re the fundraising type of person and want to take the PJ Day event one step further.

If you’re interested in this I imagine you already have a relationship with some foundation or charity group that is autoimmune disease related. If you’d like to make your event into a fund raiser, I’m certain there are many people who would be thrilled. Here’s a way to make this a win-win situation where absolutely everyone involved benefits. Do a PJ themed fundraiser, and give 92% of your earnings to your favorite charity, however we ask that when you give it to them you tell them that it’s money raised from a Find The Common Thread PJ Day Event. That way they’ll know that we are not interested in taking money away from them, but want to work together with all of them to get closer to finding the cure for all autoimmune disease. They will have a cash infusion that they weren’t counting on, they get to see that Find The Common Thread is only a win-win Foundation, and we can start establishing relationships that can lead us towards only positive change. The other 8% from your fundraising efforts can come to us (Find The Common Thread) in Canada or AARDA (American Autoimmune Related Disease Association – http://www.aarda.org) in the United States. That 8% will go towards research that is all encompassing and is looking for the commonalities and potential answers to ALL Autoimmune Disease rather than each individual one, an effort that has only yielded treatment to symptoms and disease progression thus far, no cures. If we really want to see a cure in our lifetimes we need to start approaching the subject from a different perspective.

“Insanity: doing the same thing over and over again and expecting different results.” – Albert Einstein

We need to look at autoimmune disease as the disease group that it is, not at each individual disease as a standalone. We need to look at the forest, not each individual tree.

I will create some posters and make them available here so that anyone can pick one up and print it for your event. Let’s change the game plan and maybe we will see some different results.

I will also be announcing a contest in the next week or so for all you creative types. Stay tuned.