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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) – 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 – 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.
    “Pain is inevitable. Suffering is optional.”

  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.

Another year, another PJ Day

For the fourth year in a row, we will once again stand in solidarity with those whose voice, strength, vitality, and life as they knew it, was muffled (sometimes permanently) by one of the 100+ Autoimmune Diseases.

  • 1 in 5 people are affected.
  • 3 out 4 of those are female.
  • There is no cure.
  • Often toxic treatment only adresses symptoms.

This year PJ Day is becoming PJ Days.
Get your PJ’s ready for

Saturday, February 28, 2015
– Rare Disease Day
&
Sunday, March 01, 2015
– First day of Autoimmune Disease Awareness Month.

(Jasper schedule of events to follow.)

Wear your PJ’s all day. Participate in this act of ‘nonviolent fashion disobedience’ and make a powerful statement. Take it one step further and create a PJ Day event. Do something you’re comfortable or good at, and just do it in your PJ’s. Have a party, organize a run with friends, go out dancing in PJ’s, cross country ski in your PJ’s, have a PJ downhill ski race, have a soccer match, a golf game, or roller derby clad in PJ’s …. it’s as limited as your imagination.

Stand up for the MILLIONS who can’t stand up on their own. Their own well intentioned but  confused immune system, mistakingly waging war on them from the inside, taking out organs, systems and more often than most realize, lives.

This year our friends at AARDA (American Autoimmune Related Disease Association) have come up with an idea inspired by the last three years of PJ Days in Jasper. The BEST little community in North America. Truly. Here’s what Kimberly and the AARDA crew have started. Kudos, and let’s keep that ball rolling.

#PJdancechallenge

This is such a great opportunity to raise awareness, some money, and take PJ Day and Autoimmune Disease awareness, one giant step forward in the consciousness of our human tribe, while bringing out the kid in us all. You know, that kid  that lives under the sometimes very broken body we call home. So put on your PJ’s and start a fire. A fire of inspiration, support, understanding and empathy.

Practice for performance, Jasper
Practice for performance, Jasper

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.

2014 ACH VASCULITIS SYMPOSIUM PATIENT & PARENT FORUM – Calgary, Alberta, Canada

My amazing doctor and her Vasculitis Colleagues are having a Symposium next week and patients are invited to come. By supporting these kinds of events we are sending a message that we want more of this going on in our communities. Forward momentum. Try and make it out there if you are one of the Vasculitis patients living in Alberta, BC or Saskatchewan. Maybe we’ll see you out there. It will be in Calgary on October 2, 2014 and the detailed info is below. Here is the information: 2014 ACH VASCULITIS SYMPOSIUM PATIENT & PARENT FORUM 2014 Vasculitis Evening Forum How does vasculitis research improve the care of patients? Thursday, October 2, 2014 1800-2030 ACH Kinsman Learning Centre (4th Floor), Alberta Children’s Hospital PATIENT & PARENT FORUM (Dinner Buffet) This forum is an opportunity to: • hear a panel of health care providers talk about research and vasculitis • pose questions to the panel • meet other patients & parents REGISTRATION EventBrite https://www.eventbrite.ca/e/3rd-ach-vasculitis-patient-parent-forum- tickets-12585307995 SYMPOSIUM BROCHURE Calgary Vasculitis Symposium http://cumming.ucalgary.ca/physicians/cme/courses Patients & parents are also welcome to attend the daytime symposium on October 2, 2014. Please see conference details in the attached PDF’s. CALGARY VASCULITIS SYMPOSIUM  2014 FINAL Vasculitis Day Program Update on Childhood and  Adult Systemic Vasculitis Thursday, October 2, 2014 0800-1540 This symposium is an opportunity to learn how vasculitis research is improving the care of patients. Participants will have an opportunity to learn about diagnostic options, new treatments and long term outcomes of vasculitis affecting children and young adults. This day will help to strengthen a network of healthcare providers interested in vasculitides.

Continue Aaron’s fight

I just got back from four weeks in my special place, Maui, I never feel as alive, as healthy and as ‘normal’ as I do when in Maui. There’s something about that place that brings me closer than anything to the person I use to be before getting hit with the Autoimmune Disease stick. While on holidays, I saw a documentary that affected me so deeply that I couldn’t stop crying for days. I’d just think about it and would start crying while on the beach, or having lunch, or making supper – my husband thought I had lost it.

The documentary was “The Internet’s Own Boy” the story of Aaron Swartz. (You can see it in it’s entirety here: https://www.youtube.com/watch?v=vXr-2hwTk58 ) Why did it affect me so hard? Several reasons.

I am writing a book right now. It’s slow coming but now with Hana back at school, I’m sure it will start whizzing by again. I am not, nor have I ever been one of those people who likes to point out a problem and just let it go. I want to also have a solution. I see a way towards the goal of uniting all of the science so that we can have a database where we can look for the common thread between all 140+ Autoimmune Diseases. I have been working out the details in my mind for months, and then I see this documentary about Aaron. I’m a nobody with a really gross, incurable, stupid, life threatening disease, Aaron was a brilliant – BRILLIANT – young man who was idealistic, and wanted to use his amazing brain to better society instead of taking the all to familiar route of lining his pockets and making himself a cushy life. He did the right thing. He saw the problem, which is other people lining their pockets at the expense of an entire civilization. He wrote the Guerrilla Open Access Manifesto which describes the problem very clearly (you can read it here: https://archive.org/stream/GuerillaOpenAccessManifesto/Goamjuly2008_djvu.txt ) and the solution. Problem is with this (and freeing a bunch of scientific articles from their prison) he ruffled many a feather of people who had already lined their pockets but were now addicted to that lining and would stop at nothing to not have it be interrupted in any way.  Politicians got involved, small minded, big ego prosecutors got involved and were threatening to take Aaron’s freedom in return. The story doesn’t end well, but with his efforts he is indirectly responsible for saving countless lives, and for stopping big business interest in implementing draconian internet censorship by stopping SOPA.

We have lost an enormous mind in Aaron, but his inspiration will be with me forever, because he dared to stand up to the insanity that is research and publication and big business for everyone of us. He saw the problem and he tackled it head on. Without the sharing of information, we will keep banging our heads against a wall until the end of time without anything more than little, microscopic answers to a very big and complicated question. We have the technology to sift through all the research, but we don’t have access to said research because there is too much money to be made. Publishing houses need to stand up and do the right thing. But that’ll be a whole chapter or two in my book. I can see the solution… really I can see it, and it’s doable if we are serious about healing the sick on our own continent.

Eating our way out of Autoimmune Disease

FUNDRAISIER TODAY – May 31, 2014

Nobody said it would be easy to eliminate Autoimmune Disease but today we’re going to give it another go and get one step closer to raising awareness across the globe and raising a few dollars toward that ultimate goal – no more Autoimmune Disease

Robinson’s Foods in Jasper, Alberta, Canada will have a Hot Dog and Smokie fundraising BBQ outside the store (218 Connaught Drive.)

Hot dog and pop – $2
Smokie and pop – $3

Come out and help us get that one baby step closer to fixing a big problem. We might even get lucky and get some live music going. You never know.