Our Thanks, and a Request for Your Support on a Petition

My family and I cannot thank all of you enough for your overwhelming support after taking time to listen to the CBC interview. We're reeling from the huge amount of emails that have arrived in the last twenty four hours, every last one of them positive, encouraging and uplifting!

I've spent a good amount of time teary-eyed reading your generous offers to help in any way you can. Here's one way that we can all lend our support to further the awareness of issues and challenges that Canadian rare disease patients face.
The organization "Be Fair 2 Rare" was started by Simon Ibell, a man who is all too familiar with the type of battles that our family has been fighting. You'll be hearing more about this organization in future posts - but what I'd like to draw your attention to is a petition in support of a Canadian Rare Disease Plan and Orphan Drug Policy.

Please visit the website by clicking here to access the petition link on the right hand side. You'll also be able to add your support to this cause using Facebook, Twitter - or purchase a scarf to help fund this organization (the three of us will soon be wearing ours proudly!)


If you'd like to help directly fund research for Erdheim Chester Disease please visit the ECD Global Alliance website here, click on "How Can I Help?" on the left hand side to find the "Donate" link.


In the broadcast you heard Durhane Wong-Rieger eloquently explain one of the challenges that rare disease patients face when needing to visit their local emergency department when their disease places them in crisis. Doctors and nurses often have never heard of the patient's condition and in turn the patient may not get the appropriate care (I can't think of a better reason for computerized health records for Canadians!). I'd like to share one of my own experiences from this past year.


Last March, after having a rather uneventful day I hauled myself up to the family room to watch a bit of TV (I have a bit of an obsession with Coronation Street and hate to miss it!). Partway into the program I began having trouble breathing. Not like my usual breathing difficulties (one of the side effects of pericarditis), it seemed that I could take in less air with every breath until I felt like I was choking. Not being able to speak I made my way as far down the stairs as I could, and began pounding on the wood floor to catch the attention of my husband who was in the basement at the time.


He quickly realized that I was in trouble and called 911, Ambulance, fire truck and police arrived within minutes and quickly administered nitro tablets and oxygen and prepared me for the trip to the hospital. Outstanding care!


However, at the hospital it was unfortunately a different story. I was quickly taken into the cardiac room in the ER, and things started off well. My husband was trying to explain what my illness is about, and that problem quite likely was fluid accummulation in the heart or lungs (something we're constantly on watch for).


When the doctor arrived he asked my husband to leave the room, and he very abruptly turned to me (on oxygen but still somewhat struggling for air) if I had googled my symptoms and self-diagnosed myself with Erdheim Chester Disease. "See this sort of thing all the time" he says. Then he proceeded to write an order to the nurse for morphine, all the while me insisting that I didn't want narcotics - my issue was breathing difficulty that night, not pain.

I'd written about the ER trip last March on this blog, but hadn't written about what the doctor had said to me. I felt embarrassed at being labeled a hypochondriac (if you know me, you already get that I'm much quicker to downplay my pain and discomfort rather than use if for attention!)
I felt that I'd done something wrong, and it's been bothering me ever since. I should have spoken up to the doctor and stood up for myself, but when you're feeling as scared and ill as I felt that night relief is the only thing on your mind.

Things need to change. And I'm excited about the possibility that I might be able to help in some small way.

Going Public in a Big Way! AND Sharing Great News...

I'm at my desk in my basement office, looking at a white mug with the words " CBC Radio" on one side, and "The Current" on the other. And the big deal? At this moment it's my only souvenir of a radio interview I did this morning for The Current, the national (and very popular!) radio show that will air tomorrow morning (Friday, March 11th) across Canada.

I'm very grateful and proud to be a part of bringing awareness to the challenges of diagnosing and treating rare illness across my country (and this is huge, the program has an audience of one million listeners!).

Also on the program will be a fellow ECD patient from Ontario, a representative from the Canadian Organization of Rare Disorders (CORD), and the doctor that I often mention on this blog and who I admire more than I can ever say, the incredible Dr. Ho Ping Kong.

And I was able to share some really wonderful news during the program recording. Late yesterday we received the call that we've been anxiously awaiting for weeks. The insurance company WILL fund Kineret on a compassionate basis for one year (you're missing out on the hurrays and shouts of glee emanating throughout our household!) Nothing like leaving it to the eleventh hour to add some stress, I was an hour away from my very last Kineret syringe when the call came in!

If you'd like to listen to the broadcast it can be found on CBC Radio One, 99.1 on the FM dial in Toronto, airing at 9:30 am local time (other times in other provinces). The broadcast will be available after that on the CBC Radio website at http://www.cbc.ca/thecurrent .

Thank you to CBC Radio for picking up this story, in particular thanks to Hana Gartner (our very gracious on-air host who made my nervousness disappear immediately!), Anna Maria Tremonti (The Current's regular host who brought this story idea to the show producers), Ellen Saenger (producer for our segment who pulled all the pieces together, and who helped immensely to give me confidence in going on air!), Lara (who coordinated the morning's activities flawlessly) and to all the other behind the scenes staff whom I didn't have a chance to meet. What a great experience!

One Last Kick at the Can

Thank you for the wonderful outpouring of support after putting my last post out there! It wasn't an easy one to write, but now I'm certain that it was the right thing for me to do.


I've heard from a few readers that the process to leave a comment is a bit awkward, and for that reason I'm changing the parameters on my blog. I tightened up the security last year when I was getting lots of spam, but I'd like to try to make things easier for you if you feel so inclined to add your thoughts to the blog! The simplest way to leave a message to use "anonymous", or you can use your Google account if you wish.

We're waiting on the REALLY final decision from the insurance company. They themselves initiated an appeal on their decision last week and the final piece of information that they were seeking was sent to them late this afternoon. Keeping our fingers crossed for a positive reply tomorrow. We did go ahead and bite the bullet, purchasing a one week supply of Kineret today (I have two days left of my donated stock, and I didn't want to miss any doses with a special event happening later this week!)

We've noticed a correlation between my diet and my "bad days", maybe it's just a coincidence but it would appear that perhaps I have a sensitivity to gluten. It seems that every Saturday night lately I've been awake all night with bad chest pains and trouble breathing - but I couldn't understand how the pericarditis could tell which day of the week it was!

For the last few months we've usually had company on Saturday night. Nothing fancy, usually just an extra setting at the table -but being one who loves to cook I can't help myself by trying to cook something a little different than the everyday fare. And lately I've been turning to some sort of pasta dish on these Saturday nights (something we don't normally eat, it's mostly salads, veggies and fish around here). And then hours later I'm in bad shape. I'm not lifting anything especially heavy, I'm not missing my naps, not doing much out of the ordinary for which I could otherwise blame the added discomfort.

It finally occurred to me that it might be gluten, after all I was supposed to be tested for celiac disease a few years ago and just put it on the back burner when I got my ECD diagnosis. So, I'm going gluten-free this week to see if it does indeed help. I had no idea that gluten was found in many foods beyond the pasta, bread and baked products you might think of first!

I have lots of cookbooks but none that feature gluten free recipes - so, if you happen to have someone with a gluten sensitivity in your family and have a favourite recipe, please do share! Oh, and one complication - no poultry or egg for me - yes, I'm allergic (anaphylactic shock for the poultry, I always have my Epi-Pen with me). Not much left for me to eat, eh?

What Was I Afraid Of?

When I began writing this blog almost two years ago I'd decided to keep it anonymous. I feared that I would lose clients, that I'd be looked at differently if people knew that I was ill, and worst of all that I'd be pitied.

I feared that friends, colleagues from the past, acquaintances, neighbours would all give up on me and leave me to survive the rest of my illness alone.

Little did I anticipate how things would go.

Little did I realize that it would actually be clients who would be among my strongest supporters (there have been cards and email messages of support that have reduced me to a puddle of happy tears), that clients that I'd photographed would become close friends who over and over again ask if they can do anything to help. To tell me that they'd look forward to me getting back behind my camera to photograph their families (this belief in me getting better has helped more than they'll ever know).

I didn't know that friends (and even more so my husband's friends) would be in frequent contact to ask how they could help us out. That they would feel as helpless as we often do in our trek through our medical system.

That a neighbour would become the person that I felt I could be most honest with when it came to talking about how scary this all can be (a huge hug for you J., I don't know if you realize how much you mean to me).

That a dear friend of my husband (who has also become my dear friend) would offer to ride his bike across the province to raise funds for my drugs (L., you are too much and I can't thank you enough for your incredible offer!)

That a client, now friend would realize that I need some stress relief despite me insisting that I'm fine (truth be told, I'm not always upfront about how I'm really doing). We have a date when the weather improves to do some paintballing in her backyard - guess what three letters will be written across the target. Thank you S., can't wait to pummel the heck out of ECD!

That a dear friend who used to be our family doctor when we lived in the city would help me get through this with her loving and supportive words of advice to help my amazing daughter find some sense in all of this.

That an old friend whom I needed more than just about anyone else to stay in my life would continue to be there for me without question. Always without judgement (and the many miles between us have never mattered). And who will always be there for my daughter after I can't be anymore.

There are many of you who lift me up just by putting a "Like" on my recent Facebook posts to let me know that you're there for me.

It's been a polarizing experience. There are those dear friends who have rallied around, but there have also been those that I've not heard from in quite some time. I do understand. Really. This all sucks and I'm not very exciting to be around. I wish that I could go to dinner with the girls, meet up for coffee or have you over for dinner - but that isn't my reality anymore and those invitations have long since dwindled away. I've come to terms with it.

My status as an "ill person" is very likely to soon become public. This is a good thing, it looks promising that I'll have a chance to speak up on behalf of Canadians with rare illnesses and I'm proud of this opportunity.

So I make the leap to letting you know who is behind "Sessa". My name is Sandy. Sandy Trunzer. An ordinary 46 year old wife and mother with an extraordinary illness. The names of my husband and daughter remain private (they both have different last names than myself ), you know how much they mean to me and they deserve whatever privacy that they wish to maintain.

The photography business that I've mentioned numerous times in this blog is "The Intrepid Lens" - I'm proud of my work and if you'd like to check it out please visit my website at http://www.theintrepidlens.com.

This wasn't so painful after all.

And I'd also like to thank you for reading my blog. This blog gives me an outlet when I feel like talking, and I thank you for listening! (and for contributing with comments, I love getting them!)

With warm regards, and the knowledge that I have blessings in my life beyond what I ever thought possible,
Sandy

Moving Forward

What a whirlwind the last few days have been.

First of all, I must say what incredibly supportive friends we have. I put a request out on Facebook asking if anyone had contacts in the media to help spread the word about the issue of drug funding for rare diseases here in Ontario and didn't they just go all out! I don't want to jinx anything by being too specific just yet, but we're hopeful that we'll be able to share our story as part of the big picture of the challenges that patients with rare diseases face. Keeping our fingers crossed!

A bit of good news today at my oncology appointment. My leg tumour is the same size as it was this time last year. I'm not sure if we have ten months of prednisone to thank for that (for all the nasty side effects it had better have done something positive!). It's been over two years since I had a full body bone scan, I must admit even with today's good news I'm a little anxious about what that might show. It's unusual for an Erdheim Chester patient to have the bone involvement on only one side, it's most often mirrored on the other half of the body.

It's funny how things come around in life. When we first moved to Burlington almost six years ago I wanted to jump into being a part of my new community. A local clothing store was holding a fundraiser for the Juravinski Cancer Centre in Hamilton and asked if I'd be willing to donate a portrait package as one of the silent auction items. I happily did so, and through this donation met a wonderful family who subsequently referred me to several of their friends for portrait sessions. I count several of these families as good friends today (and they bring tears to my eyes when they tell me to hurry up and get well so that I can photograph them again!)

Today I was able to see the Juravinski Cancer Centre today for the first time as a patient (even though ECD is not classified as a cancer, an oncologist is often part of the patient's medical team). My oncologist had transferred from Mt. Sinai in Toronto, and I happily followed him to his new hospital. After all, he was the one who diagnosed ECD and for that we share special connection. His first ECD case, and I do hope his last.

And lastly, it would appear that our insurance company may have caught wind of our efforts to contact the media. I received a call yesterday asking for proof that the pharmaceutical company had indeed limited my trial to three months (I was able to get that document from my doctor in Toronto), and were willing to reconsider their decision. Hmmm, let's see what the next few days brings!