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PJ’s in 2016

 

In 2016, we had our last PJ Days organized by Find the Common Thread Foundation. It wasn’t going to be the last, but as the month went along, the realization came that we have done as much as we can do from our end toward our lofty goal.

It started off on February 27, 2016 and ended off on March 31, 2016. An entire month (Autoimmune Disease Awareness Month in the US) and inspired by the writings of Dr. Noel Rose, and the efforts of AARDA (American Autoimmune Related Disease Association.)

On February 27, 2016, Jasper Junior Olympics’ Dream Team (the little guys) raced in their PJ’s. Jasper Junior Olympics is the longest standing and largest participant ski race in North America with over 400 skiers racing the weekend.

The Dream Teamers raced in PJ’s and the organizers of the race donated $1 for every skier in the ENTIRE race – a surprise beyond belief. We were just thrilled to have them participate in PJ’s and help us with our awareness efforts.
February 29, was the official PJ Day in Jasper with our annual Jasper Volunteer Fire Brigade Pancake Breakfast, followed by a PJ Parade through town at lunch time. The turnout wasn’t near as big as last year’s over 700 people, but the spirit was as high as ever with those who made it out.

IMG_2018People throughout town did their own PJ events – PJ Yoga, PJ runs, PJ breakfasts, PJ fitness classes, PJ dinners, and more in the coming days that raised money and more important, raised awareness for this disease that kills more people than any other, yet for various political and economic reasons isn’t counted and not part of the official stats.

The true cost of autoimmune disease is absolutely staggering and one day in the future we will all be a little ashamed for letting this slide by the way it has thus far. All except the folks in Jasper who have gone above and beyond to do their part in righting a wrong.

 

IMG_2084The weekend of March 12 and 13 saw a gathering of Healers using various complimentary modalities and volunteering their services to not only raise the awareness bar but also give people supplementary healing techniques to aid in the healing process for a disease that according to the western medical paradigm, has no cure. It’s hard to heal your life when you’re told by your doctors that there is no cure.

This was a powerful weekend, and I had hoped that it would spill over into something bigger. My dream this year was that with the money we raised we could make Jasper the premier healing destination on the planet. I still think this is a very viable option, however I am not going to be part of this dream and will let it manifest on its own. I have a person in mind that would make this dream a reality, but I will let that person move at their own pace, and if it is meant to be then it will be.

JAG and PJsOn March 18, Jasper Artists Guild (JAG) put on a great show that was inspired by the theme of healing. The Healing Nature of Art was a quaint opening with great food and bevies supplied by The Downstream Bar and beautiful, thought inspiring, healing art donning the walls of the cozy little gallery. We are fortunate to live in this magical place with these magical people we call our neighbours and friends.

On Sunday March 20, 2016 we had a fantastic PJ moment at Jasper’s ski area Marmot Basin. My second family. People who have supported our efforts from day one. I don’t mean just day one of PJ Days, but day one of my personal journey with this disease. I am forever grateful for all they have done for me, my family and our foundation’s efforts through the last six years. We had a group PJ ski at Marmot Basin that felt as wonderful as the previous year’s PJ Parade in the town of Jasper. The backdrop of this PJ event was unsurpassed, and the spirit of the crowd was amazing.

 

IMG_2167The final event of the month, March 31, was a PJ Onesie party put on by the Jasper Legion. I couldn’t personally attend as I had a doctor’s appointment to deal with the new flare of my disease which is the reason that I am personally pulling out of this endeavour and the foundation. I am back with the warriors, fighting for a normal life. Fighting against a beast that has taken too many friends’ lives, and this is a fight that will require all of my efforts as there are new symptoms that are deadly serious, along, of course, with the treatment protocol (which is often the mortality factor after diagnosis – and this is where the stats fail the autoimmune disease patient.)

Jasper gets it. As far as I’m concerned, this is the most educated group of people when it comes to the issues of Autoimmune Disease. More so than even collectives of patients in some cases. That’s because Jasper is a magical place full of magical people who are full of compassion, empathy, curiosity and a will to do something right for the right reasons.

I am forever grateful to everyone who has helped out over the last five years. I have no words to express the gratitude to my sister, who despite trepidation and a strong aversion to go into her own history of Psoriatic Arthritis has stood behind me no matter what. Her amazing family who have put blood, sweat and tears (embarrassed tears) to help support my crazy visions over the last five years. I am eternally grateful to my own immediate family, my unwaveringly supportive husband, my inspiring daughter, my strong, solid parents, and of course my extended family, all of whom have been there through thick and thin. I am grateful to friends and neighbours and even strangers who took up the cause across Canada, the US, Australia, Mexico, Europe and who over the last five years have done so much on PJ Days to make them special and memorable and something that is meaningful and lasts in the psyche of our town and social consciousness here and abroad.


I am truly blessed, and despite the hard times, I can say with total sincerity that this disease has brought out so much more good than bad, and it has been a journey of discovery and awakening unlike any I could have dreamed up on my own.

It is now in your hands. If it is meant to grow, it will grow because of you. If not, then we certainly gave it the old college try, and there is absolutely nothing wrong with that. I leave you with this video I posted on Facebook before the month started… I was a little blown away by the number of views it got, but it is now gone as I have deleted my Facebook account – part of Letting Go of the stuff that isn’t good for me. I have been on steroids since the end of March and already look much different than I do in this video. Love the stuff ūüėČ

No pred
March 2, 2016
About a month on 50mg of pred
May 10, 2016

Thanks for being so awesome everyone. May the Power (not Force) be with you.

With best wishes and much much Love,

Marta Rode
Founder of Find the Common Thread Foundation (now retired)

 

2017 PJ Day Events

This year we’re going to keep it simple.

Wear your PJ’s all day, take photos, share the photos and start the conversation going. Without the awareness, we lack the will, without the will we lack the funding, without the funding we lack a cure, without a cure we have too much pain, death, and high costs to families and our society. PJ Day raises awareness for autoimmune disease one PJ at a time. Feel free to start your own PJ Day event and raise the awareness bar from your corner of the world.

screen-shot-2017-03-02-at-10-57-03-am

Here’s another poster if you would like to print one out and share it.
pj-day-2017

At 5:30 join fellow PJ clad Jasperites and visitors for a collective PJ march downtown Jasper. We will meet at the Info Centre and start marching down Connaught Drive, turn back towards the centre of town at A&W down Patricia, finishing off at the Jasper Elementary School.

Go out for dinner and drinks in your PJ’s and have the most unique Happy Hour of the year.


If you are hosting additional PJ Day Events, add them below in our comments section. 

Please be sure to include the following:

  • event name
  • event location
  • event start time
  • event cost, if any
  • brief description of event

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.

‚ÄúBut they know so much more about us than we‚ÄĚ

They make us go ‚ÄúAhhh‚ÄĚ 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!

Thank you once again Jasper!

I keep telling my daughter to stop using exclamation marks and reserve them for when it really matters. In this case it really matters. Exclamation mark!!!

We just had the best PJ Day yet, and it couldn’t have happened without the hundreds of volunteer hours and dozens of donations in cash, services, and product. Jasper is the most amazing community I have ever seen, and I am lucky to be a part of it. Together we raised the bar of awareness yet another notch, but we also raised some money¬†toward our efforts to be supportive of people and families affected by this disease in real time.

We can’t undo the undoable, but we can be there as a shoulder to lean on, an empathetic ear, and a support net for¬†a family like yours and mine,¬†going through the unfathomable. Jasper is unmatched in it’s power to make things fantastic. Go big or go home, takes on a whole new meaning in the little town in the middle of the giants of rock surrounding us. Together we are a powerhouse.

You see I had written a whole swath of thank you’s on this page and hadn’t saved them when my computer crashed. It took me hours and I lost it all. Blaming it on chemo brain for not saving. I then bought some thank you cards to write them out and hand deliver them, and that didn’t materialize. I at least managed a thank you letter in The Fitzhugh, but I was so grateful by the outpouring of support that I felt I needed to do more, and with each passing day, I felt guiltier and guiltier for not having done it, until writing the thank you’s became an unbearable idea because each thank you would have to¬†include a ‘sorry it’s taken me this long to do it’ addition to the card.

So thank you everyone!!!!!!

When I heard this yesterday on ‘q’ – it made me bite the bullet and at least write an apology for being such a goofball.¬† http://www.cbc.ca/radio/q/schedule-for-monday-may-4-2015-1.3059765/should-every-day-be-email-debt-forgiveness-day-1.3059785 Pictures will be posted soon.

Anti-vax vs Pro-vax vs Inteligentsia

 

As I was driving around doing erands last week, I stumbled on Cross Country Check up on CBC. Rex Murphy was checking up on Canada, and had as his guest, Dr. Michael Gardam.

It was a pleasure to hear Dr. Gardam speak on CBC, and
I’ve decided that Rex Murphy is definitely a ‘pro-vaxer’, I waffle, and Dr. Gardam is the intelligentsia (only the forward moving type.)

It was very empowering hearing Dr. Gardam’s opinions on vaccines, the hot topic of the day in regards to Measels, and a hot topic with me as¬†the¬†H1N1 flu shot¬†was the trigger, twice, for my¬†incurable and potentially life threatening¬†health issues. I’ve been getting sucked into too many discussions on this polarized vaccine¬†topic, where “you’re either¬†with us or you’re against us” mentality rules the day. This feels like a black and white¬†world, where as soon as you question how things are working, you’re an anti-vaxer, and should probably go shine your aluminum foil hat. This is how I’ve been feeling while listening to the media, sad that we’ve gotten to this point, where opinions are so strong, people are seriously talking about eliminating basic human freedoms. The freedom to choose what we inject into our bodies. It’s absolutely mind blowing.

I don’t jump into these conversations¬†because I want to stop anyone from getting a vaccine, but because I want them to make smart, informed decisions that weigh risk and benefit as it relates to¬†them¬†and¬†their particular health and¬†family history vs the medication or vaccine you’re deciding on. I share my experience in the hopes that the mistakes I made (jumping in pretty blindly, and despite my gut feelings, believing that it is as safe as all the nurses and doctors said it was,) can be spared someone else, as sadly, this is a road of no return.

So it was nice to hear Dr. Gardam speak for the 20 or so minutes I was in the car. Pretty much everything I heard him say was in line with my own thinking, and suddenly I didn’t feel the kook that all the loud pro-vaxers, and their media puppets were trying to make me feel. He said that people should research and truly make informed decisions. Check. ¬†He said that people should be aware of the sources of their info. Check.¬†He said he trusts the old proven vaccines. Check. He said we need to rethink flu and young vaccines. Check.

So it was with great interest that I listened to a caller ask about a number of autoimmune diseases. She stumbled around her words too much though to ask a good question.I wanted to hear Dr. Gardam’s response. Problem is people at large, still don’t get that autoimmune diseases are a laaaarge number of diseases with the same etiology, so she was mumbling a few autoimmune diseases, and then she did it…. she dropped the ‘Autism’ bait. Ughhh. As soon as I heard it I knew¬†I wasn’t getting an answer. Then it became a discussion of the discredited MMR/Autism study. Question gone. Someone else called, and then another person brought up autoimmune disease, I think type 1 Diabetes, maybe MS, but then again, in comes, Autism, and this completely removes the conversation from where it needs to be.¬†I was so hoping to hear him speak on autoimmune disease, but I didn’t get to. Apparently he did, I’ll have to go back and listen to it.

I believe we need to be skeptical and informed. Just because a non human entity has told you that this is safe to inject, doesn’t mean you have to do it. If there is long standing data to support safety and efficacy, by all means protect yourself and your family. But if this¬†vaccine is younger than some of your shoes, maybe you should do some serious self educating and make a truly informed risk-benefit assessment.

When you’re¬†looking at¬†the numbers remember that even if the chances are low, if you’re that person who got the rare negative side effect of the drug/vaccine, suddenly that low risk means nothing, and your life has taken a turn in a different, unpleasant¬†direction.

Perspective Break: Gardisil
A spanky new HPV Vaccine to prevent HPV spread through sexual activity

Approved for human use in 2006.
Vaccine demographic: 10 year old girls across the country
Long term side effects: Unknown (it’s not eve 10 years old)
Cost of one dose: $400-$500
Since June 2006 Merck has globally sold 169 million doses
(you do the math: hint – it’s in the Billions)
Serious Side Effects: Rare –¬†5 reactions in 11,000 (possibly, probably or definitely related to the injection.)
(here’s the math)
Since June 2006, 76,818 young girls are possibly, probably, or definitely having a shitty go at life because of this vaccine.

Are we really OK with having 76, 818 young girls sick,¬†with serious life altering complications from a vaccine? To prevent sexually transmitted diseases? We don’t think very highly of our young girls. Is that the kind of place my daughter is going to grow up into?¬†This is just one example of¬†a young vaccine. There’s that pesky flu shot, medical boards are trying to convince us is absolutely THE thing to do if you’re a smart citizen.

Couple more points worth noting when you decide where to place your trust.

Russia and Canada are the only two countries in the G8 who do not have a system to support victims of vaccine adverse reactions. Yes, everyone knows there is a risk, and with the numbers we vaccinate, the numbers with adverse reactions will go up as well, but in Canada, our government has chosen to turn a blind eye, as well as protecting pharma companies from litigation when it comes to vaccines.

When you hear Health Canada tell you the vaccine is safe¬†because they have¬†very low reports on adverse reactions, that’s¬†because the system is set up in a¬†way to minimize feedback on vaccines. Whether it’s accidental or intentional is not my business, but it does skew the data and the information we are getting from¬†Health Canada¬†does not paint a true picture. Anyone can check this out. Try to report an adverse side effect from a pharmaceutical drug on Health Canada’s website. Anyone can do it.¬†Now go and try to do the same with a vaccine. Two different worlds. With a vaccine report, you have to get your doctor to fill it in and submit it on your behalf. Several pages. What conscientious patient would do that to their doc? All my docs know that the H1N1 triggered me (it’s also in¬†the¬†drug insert¬†– Vasculitis is a rare but possible adverse reaction to the H1N1 vaccine) but I would never ask them to take time away from their other patients, and to put their reputation on the line so they could write a vaccine report for me, because let’s face it “you’re either with us or against us…”¬†even within the medical community. Why I was so pleased to hear Dr. Gardam speak in the open minded, academic manner he did on this topic. It was truly a breath of fresh air.

So there. I’m the eternal optimist, but my experience has taught me to question, to not bleat on at volume,¬†to not believe with¬†blind faith that a big corporation (that has only it’s stakeholders/shareholders to answer to,) has my best interest in mind.

10 Reasons You Should Wear Your PJ’s All Day on February 27, 2015

Fourth Annual PJ Day
To Raise Awareness for Autoimmune Disease

This year, on Friday, February 27, you will have another opportunity to make a stand, to show support with this act of nonviolent fashion disobedience, to be part of the front lines of change, to help someone who might feel they have nobody in their corner, to be part of the fourth annual PJ Day to raise awareness for Autoimmune Disease. Here are ten reasons to give your boss when they challenge your fashion choice at work.

  1. Parks Canada, JasperNonviolent Fashion Disobedience

    Because when you deviate from the norm, people notice. They ask questions. They become engaged, and curious. We can start the conversation in the comfort of our most healing clothes, and empathy.¬†If it’s cold out, just throw them over your outdoor clothes, that’s what we do when we go PJ skiing, or all over the place¬†like last year when it was -32C .

  2. Beatufiul PrinnsTo Show Support
    For the people who are held captive in their pajamas by one of the 140+ Autoimmune Diseases and Disorders. For weeks. Months. Years. Living in them between remissions. Every age group is susceptible.
    There is no cure.

  3. BoardFor Someone You Know
    1 in 5 people are affected and 3 out of 4 of those are female. Someone you know and maybe love, is dealing with symptoms ranging from unpleasant to life threatening due to AI disease, right now. Guaranteed.

     

  4. First Year Respiratory Therapy Students, NAIT, EdmontonMake A Stand

    For those who can barely stand in the face of a devastating disease. People whose previously healthy lifestyles are left in the dust, replaced by operating rooms, chemotherapy, infusions, immune suppression, and a complete alteration of life. Stand with them as they fight their way back.

  5. Surbiton Girls from UK Supporting our Cause. How 'bout you?Change status quo

    Autoimmune Disease comes with a heavy cost. To lives, to communities, to the workforce, to healthcare and society at large. We can start the cogs of change by raising awareness. Step out of your comfort zone for a good cause. With baby steps we can get there.

  6. Jasper the bear in JammiesGive a Hand
    All money raised on February 27, 2015, will go to the Macmahon family of Jasper who are currently in the midst of an autoimmune disease battle of epic proportions.

  7. The girls and guy, one seriously awesome guy, who put it all out there.Show the powers that be

    If you or someone you know is affected by autoimmune disease (as is surely the case) and you wear your PJ’s in a show of nonviolent fashion disobedience, everyone will see symbolically, the¬†cost this disease has to our society. One in five people (and their families, friends, bosses, neighbours, colleagues…we’re all affected)

  8. marmot awesomeWe are One
    We have been kept apart for too long. We are one disease, different manifestation. Your MS, my dad’s Lupus, my Vasculitis, my sister’s Psoriatic Arthritis, they’re all autoimmune disease, the same disease etiology. We are rare in our disease manifestation but together we are a fifth of the population. Shouldn’t we have a say?

  9. Mrs Curries Grade 7Together we can do it
    Together. If we want to see something happen in our lifetime. Time to look at the forest and stop focusing on each tree. By finding the common thread between the different autoimmune diseases we might find a cure for all autoimmune disease.

  10. Hair on Earth JasperAutoimmune Disease be gone
    Find a cure for autoimmune disease, all of us are disease free… MS, RA, Lupus, Vasculitis, Colitis, Celiac and over a 100 more (mostly rare diseases,) gone. 20% of the population back from the doctor’s office and the hospital visits, working, living happy lives with happy families. Future generations only knowing about autoimmune disease from what they read in history books. Let’s make this dream a reality.

When you are done wearing your PJ’s on Friday, feel free to wear them all weekend if you want to keep the drive alive. Saturday, February 28,¬†is International Rare Disease Day (many of the Autoimmune Diseases on the list are also Rare Diseases by definition.) Sunday March 1st is the first day of Autoimmune Disease Awareness Month. Keep spreading the word. For you.¬†For your kids. For the ones you love.¬†For all of us.

12 Chronic Illness (Autoimmune Disease) Survival Tips

I write this from my own personal experience. I’m not a doctor (although I feel like I’ve worked on a PhD in Wegener’s Granulomatosis over the last five years,) so take my advice with a grain of salt and the knowledge that each disease affects each one of us differently, even within the same disease, and the treatment protocol affects us all differently (not just because we have different docs who prescribe to different schools of treatment, but also because our individual physiology responds to the same meds in their own ways.)

I have found that despite all the differences, we share a lot of similarities, and if we focus on how to deal with the common problems, it will give us enough strength and fortitude to deal with the problems that are ours and ours alone.

  1. 01No more guilt. 

    You did nothing to deserve this disease. You did nothing to facilitate getting it. Scientists don’t even know what causes it… they know genetic predisposition (so there is something in your genes that makes you more susceptible) and they know of a trigger (this could be environmental, stress, a viral or bacterial infection, the list goes on and on) ‚Äď there is no way you could have known ahead of time what your trigger would be. Because this whole situation is out of your hands, you have nothing to be guilty about. If someone else in your family got sick, you’d be there for them, doing whatever you can to make things better, just like you have your family beside you helping you. The feeling of guilt helps nothing in a positive way, and in fact could prolong your ‘down time’ because of the negative stress associated with these feelings.

  2. 02Don’t be angry at those who don’t get it. 

    This is our opportunity to take understanding, empathy and awareness for this disease group to a whole new level. Think about it. Even the medical professionals are in the dark about this group of diseases. Unless you get to the ‘specialist level’ of care, you are getting educated guesses at best. Many of these diseases are out of the realm of GP’s who treat mostly the most common of ailments. Ironically autoimmune disease affects 1 in 5 people and most likely account for a large number of the ‘mystery’ cases, that inevitably get treated with anti-depressants. This is one of the reasons so many people go undiagnosed for years, being made to feel like hypochondriacs, like crazy people, like an unnecessary burden on the medical system (while we are desperately trying to get a diagnosis and figure out why it feels like you’re dying on the inside, and the docs keep telling you there’s nothing wrong.) It is partially because of this horrid exercise that many lay folks in our circles take on a similar attitude. Lack of knowledge. Eventually they’ll get it, and you’ll know that it is because of you they have added to their storehouse of empathy and compassion.

  3. 03Arm yourself with knowledge. 

    We live in a culture where doctor knows best and their advice is followed as ‘word of God.’ This is a manageable way of operating if you have a cold or a flu or something that is acute and/or traumatic and can be fixed in a hospital OR. This is not the case with a chronic illness that has a high potential of killing you. Let’s face it, many of the diseases on the list of AI diseases, have that ability. General Practitioners are not familiar with the intricacies of our specific diseases. We are the ones who should know the most current treatment, the possible side effects of each drug, what it can’t mix with, the best time to take it for maximum efficacy with minimum side effects. We need to know that, and one day this knowledge might save your life. Acquire this knowledge during those times when you’re not completely knocked out by the disease activity or the treatment side effects, are lucid enough to retain information, and don’t have the energy to do much outside of your bed. Use those ‘not-completely-down’ days to arm yourself to the teeth with information.

  4. 04Research wisely. 

    Don’t forget that the internet is full of all kinds of scams and ulterior motives. This is why there has been such a strong aversion to patients looking up stuff on the internet in regards to their ailments. In my own doctor’s office there is a newspaper article, at least 5 years old, that quotes a study of how patients who researched their own disease had a decreased chance of survival than those who didn’t. It was based on a research sample of men over 50 with heart problems. The bias in that study is so apparent, I can’t believe it got published, but it’s there, in print so it must be true. They went out of their way to cut the article out and tape it to a door at the doctor’s office. This is the operating model with doctor’s offices yet the current expectation if we end up int he morgue is that we research our treatment. That was spoken to me on the phone by an investigator at the Edmonton Medical Examiner’s office after I spoke with him about a friend’s death that appeared to be from a drug interaction. So research wisely. Go to scientific journals, to accredited institutions specializing in Autoimmune Disease, like Mayo Clinic, Cleveland Clinic, and the support systems found within recognized charitable organizations in the disease that you’re dealing with.

  5. 05Find support in people going through the same thing. 

    Find a forum that discussing your disease. Choose wisely. There are some that focus a lot on the ‘suffering’ that goes with the disease and most discussions are a one-up-manship of symptoms. Find a place that discusses a wide range of topics on the disease; treatment, experiences and living as close to normal as possible during this experience. The wealth of information found on these forums is amazing. I feel truly blessed to have found the one for my disease, and our communal experience is unmatched for support, wisdom, compassion and kindness in times of utter despair. We feel like a family, and the group of us that were ‘in it’ at the same time, have become dear planet-wide friends. It’s like we went through boot camp together, I feel like they are family and would welcome them into my home anytime.

  6. 06Love each other. 

    Remember that your family and close friends are also going through a similar but different crappy experience.Don’t feel guilty but don’t forget that there is a helpless feeling in sitting on the sidelines, watching the one you love fight for life. Be kind to each other. When you start to feel angry, remind yourself that it’s probably the prednisone making things worse in your head than it really is. Being a female and having gone through that PMS experience where you can feel your mind taking a minor irritant and making it into a giant piss-off, I could recognized it, and could pull myself back out of the situation (most of the time.) Don’t forget to love each other and love yourself. Without the love and my family, I KNOW I wouldn’t be here today.

  7. 07Laugh as much as you can. 

    Try to laugh together, it changes the perspective and makes the passage of time go by way more pleasantly. There’s plenty to laugh about, just look at those pred cheeks and try smiling in the mirror. Now that’s funny. At least mine was ‚Äď my lips nearly disappeared between the giant cheeks. Watch the way the new-post-chemo-hair (frizz) comes in looking a lot like a chia-pet. Funny. Truly.

  8. 08Be your own best advocate. 

    Armed with that knowledge that you’ve been acquiring, the support of a world-wide community that shares your experience, and the love and support of your family, you can go into the doctor’s office and have a serious discussion about your current treatment, possible alternatives and a real risk/benefit assessment. If you’re super keen you can keep all of your lab-work records from as early on in the game as possible. You can get your doctor to write a note to release them to you, and then you’ll be better able to gauge the big picture on how you feel vs your blood work vs your treatment protocol. This is where I went with my journey. Many might not want to get that involved, but absolutely know what you want to talk to your doctor about before going in. Write your questions down, bring someone in who can remember things for you or ask if you can record the visit on your phone so that you don’t miss or forget anything. Our memories suck at the best of times, the stress of a doctor’s visit eliminates pretty much everything but a few major points during recall. You need to get on that bull and ride it. This is your ride. Not the doctor who sees many patients each day and goes home to his family in the evening, he’s not dealing with the pains, the aches, the horrid side effects of the pills. It’s you. It’s YOUR ride. Own your ride. Don’t be your ride. Own it.

  9. 09Keep an eye on your spoons. 

    If you have an autoimmune disease, you’ve probably heard of the spoon theory. Here it is if you haven’t. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/Don’t try to be a hero too soon. Remember that when you are on the high doses of steroids, you get a false sense of strength and energy. Your body is in a serious battle and using up resources to deal with the chaos. You feel strong, but loose steam suddenly and drastically. This can also set your healing back in giant steps or worst case scenario, trigger a flare. Be smart, do it right from the start. (Science has shown that treatment efficacy decreases with each subsequent flare.)

  10. 10Find something bigger to focus your attention on once you’re out of the glue. 

    For many of us this is a life-long-ride, so when you’re out of the critical ‘glue’ stage, you will need to focus your energy on something bigger, something that makes your insides sparkle with joy. My life has changed irreversibly from this disease, and that use to make me a little angry, but it’s brought in so many other amazing things that would never have come had I not gotten sick. It has allowed me to spend my mental energy, and my scarce physical energy on something that is truly meaningful to me – to pay back all of those who supported me when I was down and who have supported me while I’ve been up. I want to make a positive change in and beyond this amazing circle of support I find myself in the middle of.

  11. It’s your choice, and you can always change it.Yoga

    To every single situation there is a good and a bad. They are often in different quantities, but there is always some of each. We are the ones who decide what we focus on. The good? The bad? The one that is evidently abundant? It’s your choice. We often see only one of immeasurable number of perspectives, and this is a conscious choice. Your observational perspective is yours and can be changed only by you. I got a lesson in this right off the bat. On my hospital visit which led to diagnosis, the ER doc overseeing me, gave me a diagnosis of secondary lung cancer and told me I should ‘start getting things in order,’ after a chest X-ray. I was dying according to him. The next day I got my own team of Internal Medicine docs (who got on my case after a first year med student who was shadowing the previous night, put my symptoms together and figured out what was going on alerting the teaching group he was in for Internal Medicine.) After a lung biopsy they told me I have an incurable life threatening autoimmune disease. I’ve seen it as a blessing ever since. An opportunity to do something that needs to be done. To love my people more, and to be loved back by them. My choice was imposed on me, but it’s given me the opportunity ever since then to be mindful of my feelings and where they are coming from and whether I can change my perspective. I will close this with a quote from an amazing lady who is in this with us and is a true warrior. It’s not her quote, but in my mind it will always be attached to her.
    ‚ÄúPain is inevitable. Suffering is optional.‚ÄĚ

  12. Celebrate the small victories every day and remember you can get to your destination just as surely in baby steps as you could in leaps.