It's been over six weeks since I've posted here, and I see from the daily stats that many of you are still checking in regularly despite my inactivity. And I thank you for your continued interest, concern and sweet notes of encouragement.
However it's time to take a break from writing "Without a Manual". There have been some significant changes in my life over the last months and I just don't have it in me to share with the world at large right now. I've been told that occasionally past posts have been helpful to others seeking info about the treatment of Erdheim Chester Disease, and for that reason I'll keep the blog up for now.
For those of you interested in how my meds are working out - I couldn't be happier with my Kineret treatment. Pain is infrequent, and when it does occur is much milder than it had been before starting treatment in December. There's been talk at a recent hospital appointment about a new IL-1 inhibitor type drug that is administered less frequently (these once a day shots are becoming more difficult as scar tissue builds in the allowed injection areas). It's reassuring to know that my medical team continues to investigate other treatment options.
The gluten free diet I embarked on has also been a very positive development. When I slip up and accidentally eat a gluten product my body lets me know pretty quickly that I've goofed. So the modified diet stays!
I thank you with all my heart for the amazing support I've received from so many of you since starting this blog two years ago.If you'd like to get in touch directly I can be reached at sessa1@live.ca.
With my gratitude,
Sandy
Saturday, July 9, 2011
Monday, May 23, 2011
Going Gluten Free
My body has always given me challenges, and it seems as time goes on it complicates my life more and more. Allergies to all kinds of things have always been an issue, from the pollen allergies that have me sniffling and wheezing for months each spring and summer, to drug allergies that make treating illness somewhat difficult at times - and food allergies/sensitivities.
The latter are becoming more aggressive as the years go by. Lactose, soy, poultry, eggs are to be avoided (especially poultry, I have to carry an Epi-Pen because even the smallest amount will trigger an anaphylactic episode) and now wheat has been added to the list.
I realized that wheat products were problematic several years ago, but it wasn't until recently that I put two and two together to realize that eating wheat almost always triggered a cardiac episode for me (very irregular heartrate along with increased pericarditis pain, not to mention sheer exhaustion for a day or so). It was only because I'd gotten into the habit of making pasta every Saturday night and wondered how the heck my heart knew what day of the week it was!
After several weeks of an elimination/challenge diet we were certain. Wheat had to go. I wasn't in the habit of eating a lot of pasta or bread, but when I did I sure enjoyed it (foccacia with a bit of season olive oil, heaven!) How was I going to deal with this after eliminating so many other foods from my diet?
It's been MUCH easier than I though it would be. We never ate that many wheat products to begin with. Vegetables, fish and the occasional small portion of red meat to help with our iron levels were our staples (and I should mention my husband is on board 100% to eat the same diet, although I'm totally okay with him bringing items with gluten into the house).
Over the last two months we've introduced gluten free pasta and breads, more beans and a whole lotta brown rice to our diet. I love to cook and this experiment has given me inspiration to try new spices, techniques and other new ingredients along the way.
My heart is quieter these days, my stomach is rebelling less and I just feel better overall. The clincher has been just how many friends and acquaintances have mentioned that I look so much healthier (and in most cases they didn't know about my transition to a gluten-free diet). Looking better? Hey, I'll take that - thank you!
The latter are becoming more aggressive as the years go by. Lactose, soy, poultry, eggs are to be avoided (especially poultry, I have to carry an Epi-Pen because even the smallest amount will trigger an anaphylactic episode) and now wheat has been added to the list.
I realized that wheat products were problematic several years ago, but it wasn't until recently that I put two and two together to realize that eating wheat almost always triggered a cardiac episode for me (very irregular heartrate along with increased pericarditis pain, not to mention sheer exhaustion for a day or so). It was only because I'd gotten into the habit of making pasta every Saturday night and wondered how the heck my heart knew what day of the week it was!
After several weeks of an elimination/challenge diet we were certain. Wheat had to go. I wasn't in the habit of eating a lot of pasta or bread, but when I did I sure enjoyed it (foccacia with a bit of season olive oil, heaven!) How was I going to deal with this after eliminating so many other foods from my diet?
It's been MUCH easier than I though it would be. We never ate that many wheat products to begin with. Vegetables, fish and the occasional small portion of red meat to help with our iron levels were our staples (and I should mention my husband is on board 100% to eat the same diet, although I'm totally okay with him bringing items with gluten into the house).
Over the last two months we've introduced gluten free pasta and breads, more beans and a whole lotta brown rice to our diet. I love to cook and this experiment has given me inspiration to try new spices, techniques and other new ingredients along the way.
My heart is quieter these days, my stomach is rebelling less and I just feel better overall. The clincher has been just how many friends and acquaintances have mentioned that I look so much healthier (and in most cases they didn't know about my transition to a gluten-free diet). Looking better? Hey, I'll take that - thank you!
Thursday, May 19, 2011
Sleep, Glorious Sleep!
I don't always listen to my doctor, and at tomorrow's hospital appointment I'm going to explain why.
A few posts ago I wrote about my inability to sleep. Night after night of just two or three hours, I was wearing thin after weeks of this pattern. Feeling the kind of exhaustion that you know just isn't good for you at all, I could feel myself losing whatever fragile grip I might have on my health. My appetite had gone wacky feeling hungry all the time, unable to make decisions because the brain fog was so thick, and my sense of humour was obviously going out the window as my husband's attempts at getting me to laugh fell flat (and he's pretty darned funny).
I would take sleeping pills for a few nights in a row, but unfortunately they did absolutely nothing (whereas half a dose would usually have me out cold within half an hour when I was having a bad bout of pain). I tried most nights without pills, finding myself ever so alert at 3 a.m, and the opposite at 3 p.m. the next day.
In a call to my doctor about ten days ago, he informed me that there was nothing else he could prescribe - and to just relax. Relaxing was not my problem, just NOT SLEEPING was my problem!
I felt that somehow I needed to break the pattern, and it was time to get creative. Everything that is normally suggested for insomnia just wasn't working. So.... I took a trip through my extensive collection of prescription meds and came across an antihistamine that was prescribed when I had my injection site reactions to Kineret. What had the doctor told me? Be careful with these Sandy, they'll knock you sideways with drowsiness! Hmmmm...... Do I see a rash coming on?
When I did have the site reactions I'd not taken the prescription med (do you see a trend here?), relying instead on topical lotions so I had no idea how I'd react to them.
Out in ten minutes. And I stayed asleep for six hours. Absolute heaven. Tried again the next night, eight uninterrupted hours. And then twelve hours, a bit too much sleep but I was feeling energized again, and certainly more clear headed. One more night of almost twelve hours and I felt that I'd broken that nasty cycle of insomnia. Plus I was staying "drugged up" well into the next day.
Time to try without anything to help me sleep, and I've had a fantastic last three nights. Eight hours, waking fully rested - and back to my regular afternoon nap as well to re-energize when I start to sag.
Never have I been so pleased to realize that I was out like a light for the whole night. Bliss! And no rash either. :-)
A few posts ago I wrote about my inability to sleep. Night after night of just two or three hours, I was wearing thin after weeks of this pattern. Feeling the kind of exhaustion that you know just isn't good for you at all, I could feel myself losing whatever fragile grip I might have on my health. My appetite had gone wacky feeling hungry all the time, unable to make decisions because the brain fog was so thick, and my sense of humour was obviously going out the window as my husband's attempts at getting me to laugh fell flat (and he's pretty darned funny).
I would take sleeping pills for a few nights in a row, but unfortunately they did absolutely nothing (whereas half a dose would usually have me out cold within half an hour when I was having a bad bout of pain). I tried most nights without pills, finding myself ever so alert at 3 a.m, and the opposite at 3 p.m. the next day.
In a call to my doctor about ten days ago, he informed me that there was nothing else he could prescribe - and to just relax. Relaxing was not my problem, just NOT SLEEPING was my problem!
I felt that somehow I needed to break the pattern, and it was time to get creative. Everything that is normally suggested for insomnia just wasn't working. So.... I took a trip through my extensive collection of prescription meds and came across an antihistamine that was prescribed when I had my injection site reactions to Kineret. What had the doctor told me? Be careful with these Sandy, they'll knock you sideways with drowsiness! Hmmmm...... Do I see a rash coming on?
When I did have the site reactions I'd not taken the prescription med (do you see a trend here?), relying instead on topical lotions so I had no idea how I'd react to them.
Out in ten minutes. And I stayed asleep for six hours. Absolute heaven. Tried again the next night, eight uninterrupted hours. And then twelve hours, a bit too much sleep but I was feeling energized again, and certainly more clear headed. One more night of almost twelve hours and I felt that I'd broken that nasty cycle of insomnia. Plus I was staying "drugged up" well into the next day.
Time to try without anything to help me sleep, and I've had a fantastic last three nights. Eight hours, waking fully rested - and back to my regular afternoon nap as well to re-energize when I start to sag.
Never have I been so pleased to realize that I was out like a light for the whole night. Bliss! And no rash either. :-)
Wednesday, May 11, 2011
How I Spend My Afternoons
I just posted this on Facebook, but I thought I'd also share with all of you a brief story about how exciting my days are around here - despite being a bit grumpy about my lack of sleep (see previous post) we can still have a good laugh. :-)
Kinda proud of myself, saw a big ole spider (hate having them in the house, or worse on me!) waaaaay up high on the vaulted ceiling and wondered when he might be ready to take a trip down to visit us, but decided not to wait. Devised a catcher by putting the sticky side of duct tape facing outwards on the end of a broom handle and climbed up on a chair. Got the sucker, but when I went to show my husband (proud of me? catching huge* spideys!) he jumped off and scuttled towards my feet. So much for my fearlessness, my shriek was probably heard in Hamilton.
I really need to patent these brilliant (semi brilliant at least!) ideas... :-)
Kinda proud of myself, saw a big ole spider (hate having them in the house, or worse on me!) waaaaay up high on the vaulted ceiling and wondered when he might be ready to take a trip down to visit us, but decided not to wait. Devised a catcher by putting the sticky side of duct tape facing outwards on the end of a broom handle and climbed up on a chair. Got the sucker, but when I went to show my husband (proud of me? catching huge* spideys!) he jumped off and scuttled towards my feet. So much for my fearlessness, my shriek was probably heard in Hamilton.
I really need to patent these brilliant (semi brilliant at least!) ideas... :-)
* I should add that my husband might have a differing definition for "huge" than I do when it comes to spiders. But just spiders. Well, maybe snakes too. I must have the "scary beast magnification option" installed in my vision software.
Tuesday, May 10, 2011
Dare I Dream? Not!
I was like most kids at bedtime, not wanted to go to sleep for fear that I might miss something exciting. And I was also an avid reader who hated to put a book down until I'd turned over the last page (it wasn't unusual to find me still awake far later than I should be with a flashlight and my newest novel under the sheets).
It's usually much later that we truly appreciate what a gift a good night of sleep can be. For most of my adulthood it was something I took for granted; my head hit the pillow and I was out for a good seven or eight hours. And aside from a pretty rough first six months with colic, my daughter also joined the the league of good sleepers (didn't we just make so many of the other parents envious!)
During the ten months I was on steroids my need for sleep diminished significantly, a very common side effect during prednisone treatment. But during that time, I didn't feel the need to catch up with naps - steroids put me into overdrive! I slept little, talked quickly, had thoughts swirling around at a miles a minute. My family were probably secretly begging for a pause switch to be installed!
As my dosages dropped over the months, my regular sleep pattern returned. And then some. It seemed like all I could do was sleep all night and nap most of the day. Getting absolutely nothing productive accomplished besides keeping the bed and couch warm.
And then something happened about five weeks ago that I'm at a loss to explain. Within a few days I went from sleeping excessive amounts to hardly sleeping at all. Hard to believe, but over the past few weeks I've slept on average about three hours a night, and up to five hours on the best night in the last month.
My days however are long, feeling physically spent but unable to nap. Like there's a brilliant light shining into my eyes that I can't turn off or dim. Every single night it's the same routine, I lay awake until about 4 am, and wake up just a few short hours later to a day that drags on seemingly forever.
Why didn't I appreciate it more when a good night of sleep took no effort whatsoever? And why do my most alert hours have to happen when I can't use them to best advantage? I'd love to spend time with my family, catch up with friends, enjoy meals with loved ones (I'm as hungry as all get-out when I'm so awake!). No takers I'm afraid, I'm on my own.
Sleep, please find me again. I promise I'll appreciate you more this time around.
It's usually much later that we truly appreciate what a gift a good night of sleep can be. For most of my adulthood it was something I took for granted; my head hit the pillow and I was out for a good seven or eight hours. And aside from a pretty rough first six months with colic, my daughter also joined the the league of good sleepers (didn't we just make so many of the other parents envious!)
During the ten months I was on steroids my need for sleep diminished significantly, a very common side effect during prednisone treatment. But during that time, I didn't feel the need to catch up with naps - steroids put me into overdrive! I slept little, talked quickly, had thoughts swirling around at a miles a minute. My family were probably secretly begging for a pause switch to be installed!
As my dosages dropped over the months, my regular sleep pattern returned. And then some. It seemed like all I could do was sleep all night and nap most of the day. Getting absolutely nothing productive accomplished besides keeping the bed and couch warm.
And then something happened about five weeks ago that I'm at a loss to explain. Within a few days I went from sleeping excessive amounts to hardly sleeping at all. Hard to believe, but over the past few weeks I've slept on average about three hours a night, and up to five hours on the best night in the last month.
I'm not fretting, I'm not worrying, it's not stress that keeps me alert every night. Just a complete inability to drift off. It's actually a bit alarming just how chipper I am at 3 am. Even annoyingly so I'd venture.
My days however are long, feeling physically spent but unable to nap. Like there's a brilliant light shining into my eyes that I can't turn off or dim. Every single night it's the same routine, I lay awake until about 4 am, and wake up just a few short hours later to a day that drags on seemingly forever.
Why didn't I appreciate it more when a good night of sleep took no effort whatsoever? And why do my most alert hours have to happen when I can't use them to best advantage? I'd love to spend time with my family, catch up with friends, enjoy meals with loved ones (I'm as hungry as all get-out when I'm so awake!). No takers I'm afraid, I'm on my own.
Sleep, please find me again. I promise I'll appreciate you more this time around.
Sunday, April 17, 2011
My Apple Tree and Other Broken Stuff
Almost two years ago I wrote a post about the apple tree that sits not far from my bedroom window. A tree that's special to me, it's also had its share of indignities cast upon it during the few years we've been living here.
I've been looking forward to the luscious aroma of apple blossoms that comes forth every April, telling me that spring is truly here. Time to throw the windows open and welcome the freshness indoors. Well, it ain't that kind of spring this year! It's snowed twice today. Nothing that sticks to the ground, but enough that we're all moaning that instead we should be getting out the short sleeved shirts and shorts - not hanging on to our parkas and turtlenecks!
It's also been very windy over the last week, gusts that make the house moan and creak. On on especially windy night earlier this week I heard a large crackle just as my husband was coming up the stairs to bed. I called out to make sure he was okay, but he'd not taken a tumble down the steps thankfully and I chalked the noise up to a garbage can blowing around outside.
The next morning as I was looking out at my apple tree as I always do, I was shocked to view what must have been the source of the noise the previous night. A couple of substantial limbs had been sheared off and lay close to the trunk.
Normally I'd just think this quite sad that such a beautiful tree had been damaged - but this is MY tree. The tree that I'd hoped would recover from previous damage, just as I had hoped at the time I wrote my earlier post that I would recover from the damage to my body. We were in this together!
The timing of this really hit me hard, it was just a day after we'd been to the hospital to review the results of tests and scans that I've undergone over the last few weeks. My illness is advancing. The bone lesions are spreading up my leg and into my hip, and my aorta now has involvement as well.
My tree and I are both not doing well. And in that same post of almost two years ago I wrote about having to postpone my dream trip to the Big Apple. And finally I must accept that it'll likely never happen. And sometimes when you can't have something it seems like it's all you can think about.
And as I finish up this post, it's snowing again. Not just snow, it's almost blizzard-ish. I think I'll just go back to bed and pull the sheets up over my head. 'Cause it's just that kind of a week.
Sunday, April 3, 2011
That Which Keeps Me Sane OR My Favourite Things
If you follow this blog you'll know that I spend a lot of time at home. If I leave the house it's almost always for a visit to the hospital or some other medical appointment or test. On the rare occasion I might be up to a short trip to the grocery store, or if I'm having an exceptionally good day we might even go out for a meal together. In any case right now I need someone to drive me so that limits my options as well.
Thankfully I'm a bit of homebody so I don't feel like a shut-in too often, but it helps that I'm able to keep myself busy within these four walls. I'm often asked how I keep myself from going stir crazy so I thought I'd share a little of what I do here at home - which translated into My Favourite Things!
My iPad. My husband had to talk me into getting one last summer and now I truly don't know what I would have done without it. It's been great for keeping my mind busy when I've had trouble moving around and it also gives me something to do between appointments on those longer hospital visits. And yay for Angry Birds and Epicurious!
My kitchen. Yes, there are three of us living here in this house, but it's really MY kitchen. I love my collection of gadgets, the well stocked spice cupboard, my Paderno pots and pans. Feeding my favourite people gives me so much pleasure, it's an activity that unless I'm really badly off I manage to save energy for at the end of the day. Current favourite recipe? Curried basmati rice with cashews. Yum! With thanks to my husband and daughter who happily fetch whatever ingredients I need, and always eagerly eat up whatever I serve them :-)
The dishwasher. See above. I wouldn't be so enthusiastic about cooking if I didn't have the dishwasher to do the bulk of the washing up!
Meyer lemons. Sadly gone for the season, they'll be available again at the end of the year. I'm going to miss those sweetly tart fruits that added so much to my meal repertoire over the last few months.
Now to veer from the kitchen, my hot pink blanket. Not just any hot pink blanket, a thoughtful gift last summer from my daughter who knows that I'm almost always feeling cold, and it's got "One Tough Cookie" written across it. I do try to live up to that title!
Crossword Puzzles. The really hard ones, I prefer puzzles that I'm not able to finish. Just what I need before bed to calm my mind.
And a recent addition to my list, MAC Sheen Supreme Lipstick. I'm not a makeup fanatic, but this stuff just makes me feel more human these days. I'm fitting back into most of my old clothes again after my steroid adventure (good riddance black stretchy pants!) and I needed to feel more feminine again (and less "patient-y"!) and this stuff does the trick. Very subtle, just a bit of colour but it has the power to make me feel better about myself again!
Thankfully I'm a bit of homebody so I don't feel like a shut-in too often, but it helps that I'm able to keep myself busy within these four walls. I'm often asked how I keep myself from going stir crazy so I thought I'd share a little of what I do here at home - which translated into My Favourite Things!
My iPad. My husband had to talk me into getting one last summer and now I truly don't know what I would have done without it. It's been great for keeping my mind busy when I've had trouble moving around and it also gives me something to do between appointments on those longer hospital visits. And yay for Angry Birds and Epicurious!
My kitchen. Yes, there are three of us living here in this house, but it's really MY kitchen. I love my collection of gadgets, the well stocked spice cupboard, my Paderno pots and pans. Feeding my favourite people gives me so much pleasure, it's an activity that unless I'm really badly off I manage to save energy for at the end of the day. Current favourite recipe? Curried basmati rice with cashews. Yum! With thanks to my husband and daughter who happily fetch whatever ingredients I need, and always eagerly eat up whatever I serve them :-)
The dishwasher. See above. I wouldn't be so enthusiastic about cooking if I didn't have the dishwasher to do the bulk of the washing up!
Meyer lemons. Sadly gone for the season, they'll be available again at the end of the year. I'm going to miss those sweetly tart fruits that added so much to my meal repertoire over the last few months.
Now to veer from the kitchen, my hot pink blanket. Not just any hot pink blanket, a thoughtful gift last summer from my daughter who knows that I'm almost always feeling cold, and it's got "One Tough Cookie" written across it. I do try to live up to that title!
Crossword Puzzles. The really hard ones, I prefer puzzles that I'm not able to finish. Just what I need before bed to calm my mind.
And a recent addition to my list, MAC Sheen Supreme Lipstick. I'm not a makeup fanatic, but this stuff just makes me feel more human these days. I'm fitting back into most of my old clothes again after my steroid adventure (good riddance black stretchy pants!) and I needed to feel more feminine again (and less "patient-y"!) and this stuff does the trick. Very subtle, just a bit of colour but it has the power to make me feel better about myself again!
Friday, April 1, 2011
The Process of "Un-Blahhing" Myself
Ok, I know - a totally made-up word this "un-blahhing" but it's the best way to describe what I've been trying to accomplish over the last few weeks. It's been a little while since I've posted, and I'm pleased to report that for the most part I've been physically feeling much better. Very little pain and that heart of mine seems to be listening to my requests to please just settle down!
If I'm feeling physically better, than why I have I been feeling a bit down? I ask myself that and the best answer I can come up with is that I'm not close enough to either side. Well or sick. Not that I want to be anywhere near the sick side, but it's easier to define what I can and can't do. I'm not well enough (yet! My optimism hasn't escaped me completely) to do many things I'd like to; I'm still lacking in strength and so very tired much of time. I think if I'm not in much pain and my heart isn't acting up too badly surely I can resume working occasionally (or any number of activities that I enjoy that are currently off the table). Not quite as easy as that I'm finding.
Just let it be said that I'm trying hard to lift my spirits up. The CBC radio interview was a wonderful experience and it looks like some very good things (re rare disease awareness in Canada) could arise from the contacts I've made. I'm delighted to have reconnected with a few old friends recently (in my very weird "this can't be a coincidence" kind of way that seems the norm for our household), and various scans and tests at the hospital over the last few weeks show that my current meds seem to be keeping my illness in check.
Is it wrong to want more? It's this in-between space where I've landed that makes me feel like I'm hanging precariously between good and bad. Wondering more than ever after a good day how the next morning will look. I'm looking for consistency that will likely never be there again with this unforgiving illness. And after all this time, shouldn't I be used to this roller coaster ride?
If I'm feeling physically better, than why I have I been feeling a bit down? I ask myself that and the best answer I can come up with is that I'm not close enough to either side. Well or sick. Not that I want to be anywhere near the sick side, but it's easier to define what I can and can't do. I'm not well enough (yet! My optimism hasn't escaped me completely) to do many things I'd like to; I'm still lacking in strength and so very tired much of time. I think if I'm not in much pain and my heart isn't acting up too badly surely I can resume working occasionally (or any number of activities that I enjoy that are currently off the table). Not quite as easy as that I'm finding.
Just let it be said that I'm trying hard to lift my spirits up. The CBC radio interview was a wonderful experience and it looks like some very good things (re rare disease awareness in Canada) could arise from the contacts I've made. I'm delighted to have reconnected with a few old friends recently (in my very weird "this can't be a coincidence" kind of way that seems the norm for our household), and various scans and tests at the hospital over the last few weeks show that my current meds seem to be keeping my illness in check.
Is it wrong to want more? It's this in-between space where I've landed that makes me feel like I'm hanging precariously between good and bad. Wondering more than ever after a good day how the next morning will look. I'm looking for consistency that will likely never be there again with this unforgiving illness. And after all this time, shouldn't I be used to this roller coaster ride?
Saturday, March 12, 2011
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.
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.
Thursday, March 10, 2011
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!
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!
Monday, March 7, 2011
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?
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?
Thursday, March 3, 2011
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.
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
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
Tuesday, March 1, 2011
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!
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!
Saturday, February 26, 2011
Time to Bust Out
Yesterday was a tough day.
Our appeal to the insurance company went down in flames, refused once again. And our other option of applying to the Ontario Drug Assistance Plan really isn't an option since another ECD patient was recently refused coverage for Kineret, after an appeal as well.
We're hoping that the manufacturer of Kineret will help us out, but I'm not terribly optimistic since they made it very clear at the beginning of my three month trial that it wouldn't be extended.
I have just a few vials of Kineret left, and have started alternating my shots every other day in order to stretch it out. I wonder how soon after that last vial I'll be again hobbling around and in significant pain? The thought scares me silly. Although I still don't have a lot of energy, being able to sleep (mostly) pain free and being able to get up and down the stairs for the last couple of months has been a huge blessing. Just being able to go to another floor of our home has helped me to stay positive.
The sad thing is that if we (myself and the other Ontario ECD patients) had cancer or other prevalent serious illness this wouldn't be an issue. This denial of treatment is down to one thing and one thing only. There is no drug anywhere that lists on its label "for the treatment of Erdheim Chester Disease". A few words keep us from getting treatment coverage.
When I first started this blog almost two years ago I explained why I was using a pseudonym, being self-employed I didn't want to scare away clientele. The reality is that it looks far less likely that I'll ever get back to work and all I'm looking for now is a bit of mobility and pain relief for whatever time I have left.
So we launched one of our big guns yesterday. A letter was sent to a reporter of a major Toronto newspaper who had recently written a series of articles about a young patient refused access to an expensive drug that was provided to another patient elsewhere in Ontario at no charge. We're hoping that International Rare Disease Day falling on Monday will open the door to conversations about treatment coverage for rare illnesses. At the very least shame our insurance company and the government into helping us.
We're well aware that the prognosis for ECD is not good. Kineret and other drugs being prescribed around the world for ECD are not a cure. I'm just looking to spend the rest of my life in a bit more comfort rather than constantly be battling for the opportunity to get some relief.
Our appeal to the insurance company went down in flames, refused once again. And our other option of applying to the Ontario Drug Assistance Plan really isn't an option since another ECD patient was recently refused coverage for Kineret, after an appeal as well.
We're hoping that the manufacturer of Kineret will help us out, but I'm not terribly optimistic since they made it very clear at the beginning of my three month trial that it wouldn't be extended.
I have just a few vials of Kineret left, and have started alternating my shots every other day in order to stretch it out. I wonder how soon after that last vial I'll be again hobbling around and in significant pain? The thought scares me silly. Although I still don't have a lot of energy, being able to sleep (mostly) pain free and being able to get up and down the stairs for the last couple of months has been a huge blessing. Just being able to go to another floor of our home has helped me to stay positive.
The sad thing is that if we (myself and the other Ontario ECD patients) had cancer or other prevalent serious illness this wouldn't be an issue. This denial of treatment is down to one thing and one thing only. There is no drug anywhere that lists on its label "for the treatment of Erdheim Chester Disease". A few words keep us from getting treatment coverage.
When I first started this blog almost two years ago I explained why I was using a pseudonym, being self-employed I didn't want to scare away clientele. The reality is that it looks far less likely that I'll ever get back to work and all I'm looking for now is a bit of mobility and pain relief for whatever time I have left.
So we launched one of our big guns yesterday. A letter was sent to a reporter of a major Toronto newspaper who had recently written a series of articles about a young patient refused access to an expensive drug that was provided to another patient elsewhere in Ontario at no charge. We're hoping that International Rare Disease Day falling on Monday will open the door to conversations about treatment coverage for rare illnesses. At the very least shame our insurance company and the government into helping us.
We're well aware that the prognosis for ECD is not good. Kineret and other drugs being prescribed around the world for ECD are not a cure. I'm just looking to spend the rest of my life in a bit more comfort rather than constantly be battling for the opportunity to get some relief.
Thursday, February 17, 2011
Let's Play the Good News/Bad News Game
The Good News:
Last week I went back on some heart meds that didn't work out well for me last year, but in combination with Kineret things are looking up! It's taken some experimenting with dosages and the time of day that I take this new drug but I've had two good days in a row. I even felt well enough today to drive for the first time in about a month. Just to the pharmacy (to pick up more drugs mind you) but it felt wonderful to get out of the house.
The Bad News:
On the way back from the pharmacy this morning I picked up the mail. I didn't expect to hear back from the insurance company so soon (the application for Kineret coverage only reached them Thursday evening) - but I could have waited a bit longer for this news. No, no and absolutely no. No coverage for ANYTHING that doesn't specifically state that it's for the treatment of Erdheim Chester Disease. No such thing. Not one drug in existence that states that it's for the treatment of ECD. For the icing on the cake, the letter was unsigned without a printed name of the bottom. An anonymous slap in the face.
So despite the fact that medical teams around the world are investing heavily in research to improve the quality of life, and hopefully the lifespan of ECD patients - their findings are dismissed by our insurance company. And our government also declines to help (a fellow ECD patient in Ontario already had to find this out the hard way, and I've been advised that it's not worth the effort to apply to the government after another patient has been refused coverage. Again because it's "off-label").
I have two and half weeks worth of Kineret left in my fridge. I try really hard not to dwell on this point, but the stats tell us that 60% of ECD patients die within 32 months of diagnosis. I'm at month 25. And I'm in the group (cardiac involvement) that usually lands in the 60%.
So I play that stupid mind game of "what would you do if you were told that you had six months to live?" Fight like hell with our insurance company and government for a drug that might improve those odds? Or save whatever energy I have to spend time with my family? There is no right answer to this one.
I'm not the only ECD patient (or person with a rare and serious illness) out there and many of us are dealing with this issue. Things have to change. Change so that we can stop wishing that we instead had a "common" serious illness for which drugs would be handed out without a blink of an eye because of what is printed on the drug label.
Last week I went back on some heart meds that didn't work out well for me last year, but in combination with Kineret things are looking up! It's taken some experimenting with dosages and the time of day that I take this new drug but I've had two good days in a row. I even felt well enough today to drive for the first time in about a month. Just to the pharmacy (to pick up more drugs mind you) but it felt wonderful to get out of the house.
The Bad News:
On the way back from the pharmacy this morning I picked up the mail. I didn't expect to hear back from the insurance company so soon (the application for Kineret coverage only reached them Thursday evening) - but I could have waited a bit longer for this news. No, no and absolutely no. No coverage for ANYTHING that doesn't specifically state that it's for the treatment of Erdheim Chester Disease. No such thing. Not one drug in existence that states that it's for the treatment of ECD. For the icing on the cake, the letter was unsigned without a printed name of the bottom. An anonymous slap in the face.
So despite the fact that medical teams around the world are investing heavily in research to improve the quality of life, and hopefully the lifespan of ECD patients - their findings are dismissed by our insurance company. And our government also declines to help (a fellow ECD patient in Ontario already had to find this out the hard way, and I've been advised that it's not worth the effort to apply to the government after another patient has been refused coverage. Again because it's "off-label").
I have two and half weeks worth of Kineret left in my fridge. I try really hard not to dwell on this point, but the stats tell us that 60% of ECD patients die within 32 months of diagnosis. I'm at month 25. And I'm in the group (cardiac involvement) that usually lands in the 60%.
So I play that stupid mind game of "what would you do if you were told that you had six months to live?" Fight like hell with our insurance company and government for a drug that might improve those odds? Or save whatever energy I have to spend time with my family? There is no right answer to this one.
I'm not the only ECD patient (or person with a rare and serious illness) out there and many of us are dealing with this issue. Things have to change. Change so that we can stop wishing that we instead had a "common" serious illness for which drugs would be handed out without a blink of an eye because of what is printed on the drug label.
Tuesday, February 15, 2011
Where to Lay Blame
I feel as if I've been hit by a bus the last few weeks. What did I do to myself to set off this latest round? That shovelling from a few weeks back? One of my meds? Something I've been eating?
It's natural to search for a reason when things change. I have a difficult time admitting that it might simply be the natural progression of my illness; that I have to be more accepting of how I'm feeling and the limitations that my health places upon me.
Not quite ready to blame Kineret however. I'm nine weeks into this trial and it's still helping greatly with my mobility and to some degree with my bone pain. My heart on the other hand has been misbehaving. Badly.
It's been rounds of scans and other tests to see what might be going on besides the pericarditis. We're waiting for results of the latest CAT scans to see if my lungs and brain might have developed any problems. Nothing seems to be working right from the weird tremors that shake my hands, the numbness in my foot, and the continued breathing difficulties.
And I discovered yet one more medication that I'm allergic to - Pulmicort. I was put on this steroid inhaler to see if it would help with my breathing but all I got was a lovely rash from neck to knees for a few days.
It's hard not to feel beaten down and trodden upon by ECD when it's hard to do anything more than lay on the couch, occasionally getting up to do something useful around the house that doesn't require a lot of exertion. Every action is measured, is it worthy of how it's likely to make me feel afterwards?
Yes, I'm feeling sorry for myself right now. This just isn't me. It's me with ECD tugging at me every single moment until I want to kick it clear across Lake Ontario. If only I could muster enough energy to at least get it to the curb for a few days.
It's natural to search for a reason when things change. I have a difficult time admitting that it might simply be the natural progression of my illness; that I have to be more accepting of how I'm feeling and the limitations that my health places upon me.
Not quite ready to blame Kineret however. I'm nine weeks into this trial and it's still helping greatly with my mobility and to some degree with my bone pain. My heart on the other hand has been misbehaving. Badly.
It's been rounds of scans and other tests to see what might be going on besides the pericarditis. We're waiting for results of the latest CAT scans to see if my lungs and brain might have developed any problems. Nothing seems to be working right from the weird tremors that shake my hands, the numbness in my foot, and the continued breathing difficulties.
And I discovered yet one more medication that I'm allergic to - Pulmicort. I was put on this steroid inhaler to see if it would help with my breathing but all I got was a lovely rash from neck to knees for a few days.
It's hard not to feel beaten down and trodden upon by ECD when it's hard to do anything more than lay on the couch, occasionally getting up to do something useful around the house that doesn't require a lot of exertion. Every action is measured, is it worthy of how it's likely to make me feel afterwards?
Yes, I'm feeling sorry for myself right now. This just isn't me. It's me with ECD tugging at me every single moment until I want to kick it clear across Lake Ontario. If only I could muster enough energy to at least get it to the curb for a few days.
Thursday, February 3, 2011
Self Admissions
I detest admitting that I'm sick. But ECD has slapped me around a bit the last few weeks, and just maybe it's time to realize that I shouldn't push myself so hard. I think I've said this before but maybe it's high time I had a serious chat with myself. And actually followed through.
I'm eight weeks into my twelve week Kineret trial, and decided today that I definitely want to keep taking it beyond the trial period. Now comes the funding nightmare, but the upside is that the drug company is helping me this time. I suspect that their voice is much louder than mine!
Kineret has helped greatly with my mobility, and now with the bone pain (I've hardly had any the past week!) The cardiac issues are something else, but maybe Kineret needs more time. Or I need to stop pushing those boundaries so hard.
Although it felt great at the time, shovelling the snow a few weeks back seems to have set off weeks of misery. What the heck did I do to myself? I'd been doing so well in the first few weeks of Kineret, did I undo all that in just one hour?
I've made a promise to my family. No more lifting, no more "let me do it!", and most definitely no more shovelling. No more of anything that feels like it just might be more than I should be doing.
Give the inflammation in my heart a chance to settle down, to let Kineret do its thing. To hopefully breathe more normally again (talking on most days this past week sets off a round of coughing that leaves me gasping for air). Not to mention the tremors that have kicked in too. What an adventure one night last week trying to get food on my fork, and then fork to mouth. I came way too close to asking someone else at the table to feed me so I didn't leave the table hungry.
My doctor called this morning (on his day off no less) to let me know I'd be at the hospital longer than usual tomorrow. He didn't want to say just yet what tests were being lined up, but I'm ready to know more about the extent of the ECD in my body.
Not only ready, I need to know.
I'm eight weeks into my twelve week Kineret trial, and decided today that I definitely want to keep taking it beyond the trial period. Now comes the funding nightmare, but the upside is that the drug company is helping me this time. I suspect that their voice is much louder than mine!
Kineret has helped greatly with my mobility, and now with the bone pain (I've hardly had any the past week!) The cardiac issues are something else, but maybe Kineret needs more time. Or I need to stop pushing those boundaries so hard.
Although it felt great at the time, shovelling the snow a few weeks back seems to have set off weeks of misery. What the heck did I do to myself? I'd been doing so well in the first few weeks of Kineret, did I undo all that in just one hour?
I've made a promise to my family. No more lifting, no more "let me do it!", and most definitely no more shovelling. No more of anything that feels like it just might be more than I should be doing.
Give the inflammation in my heart a chance to settle down, to let Kineret do its thing. To hopefully breathe more normally again (talking on most days this past week sets off a round of coughing that leaves me gasping for air). Not to mention the tremors that have kicked in too. What an adventure one night last week trying to get food on my fork, and then fork to mouth. I came way too close to asking someone else at the table to feed me so I didn't leave the table hungry.
My doctor called this morning (on his day off no less) to let me know I'd be at the hospital longer than usual tomorrow. He didn't want to say just yet what tests were being lined up, but I'm ready to know more about the extent of the ECD in my body.
Not only ready, I need to know.
Sunday, January 23, 2011
New Friends
Bad things happen. And not that we want bad things to happen to others but there is some comfort to be found in knowing that you're not the only person facing a particular challenge.
Finding the Erdheim Chester Global Alliance has allowed me to connect with other ECD patients around the world, and for this I've been grateful. And I'm so very thankful for the efforts of the Alliance volunteers who maintain the website , raise funds for further studies, provide us with a forum to communicate and much more. Especially the "much more" part - a special thanks to Kathy who is always there to listen and offer suggestions as we navigate the maze of dealing with a rare illness.
Here comes what could be a very long story, but I'll keep this short. In the last week I've connected with two ECD families, one about a five hour drive away and one about a ten minute drive away. The first diagnosed in the last couple of months, the latter in the last two weeks.
I was floored. Here are two families that face the same Ontario health system, in some cases the same hospitals (however not the same doctors, but we'll be working on making some connections between our medical teams!)
Of course I wouldn't wish this illness on anyone, but there was elation in finding nearby "teammates" in this challenge. Last weekend I even met the wife of the patient who lives very close by and we hope to get our families together soon (and the one further away promises to be in this area later this year).
I'm excited about connecting with these two families, and we've committed to working together towards getting drug funding (we're all facing the challenge of getting help paying for Kineret) and other issues that might be unique to furthering the cause for ECD for patients in Canada.
On the subject of Kineret, I'm well used to the shots now. A nurse from Biovitrum (the maker of Kineret) called this week to check on me and gave me some very useful suggestions for making the injections a little less painful.
Here's the dirt.
After six weeks of treatment my joint pain has greatly diminished to the point that I'm walking quite normally again.
Bone pain is still there, but less frequent. When it does come it seems sharper, but I'm concentrating on the "less frequent" part!
The cardiac pain has still been a bit of a challenge. Today is the first day in about two weeks where I've not felt it (I hope I haven't jinxed myself, still about six hours to go!) The pericardial rub is still going strong, although my doctors feel that it's less widespread across the heart and concentrated more in one area.
Still very optimistic about this trial!
Finding the Erdheim Chester Global Alliance has allowed me to connect with other ECD patients around the world, and for this I've been grateful. And I'm so very thankful for the efforts of the Alliance volunteers who maintain the website , raise funds for further studies, provide us with a forum to communicate and much more. Especially the "much more" part - a special thanks to Kathy who is always there to listen and offer suggestions as we navigate the maze of dealing with a rare illness.
Here comes what could be a very long story, but I'll keep this short. In the last week I've connected with two ECD families, one about a five hour drive away and one about a ten minute drive away. The first diagnosed in the last couple of months, the latter in the last two weeks.
I was floored. Here are two families that face the same Ontario health system, in some cases the same hospitals (however not the same doctors, but we'll be working on making some connections between our medical teams!)
Of course I wouldn't wish this illness on anyone, but there was elation in finding nearby "teammates" in this challenge. Last weekend I even met the wife of the patient who lives very close by and we hope to get our families together soon (and the one further away promises to be in this area later this year).
I'm excited about connecting with these two families, and we've committed to working together towards getting drug funding (we're all facing the challenge of getting help paying for Kineret) and other issues that might be unique to furthering the cause for ECD for patients in Canada.
On the subject of Kineret, I'm well used to the shots now. A nurse from Biovitrum (the maker of Kineret) called this week to check on me and gave me some very useful suggestions for making the injections a little less painful.
Here's the dirt.
After six weeks of treatment my joint pain has greatly diminished to the point that I'm walking quite normally again.
Bone pain is still there, but less frequent. When it does come it seems sharper, but I'm concentrating on the "less frequent" part!
The cardiac pain has still been a bit of a challenge. Today is the first day in about two weeks where I've not felt it (I hope I haven't jinxed myself, still about six hours to go!) The pericardial rub is still going strong, although my doctors feel that it's less widespread across the heart and concentrated more in one area.
Still very optimistic about this trial!
Thursday, January 13, 2011
Too Stubborn For My Own Good
In my last post, I was boasting about how I had shoveled the driveway twice over the weekend when we got a good dumping of snow. I tell you, sometimes I really ought to be more careful - I'm often pushing my limits a bit more than I ought to. Despite my husband asking me to take it easy and offering to do these more vigorous chores instead - there I go and try and do it myself.
After having a great week I think I undid my progress; I ended up in bed for a few days trying not to get my heart too agitated - it really let me know that I had overdone it.
Lesson learned. For now. :-)
Next obstacle was my flu shot. Yes, I should have gotten it a couple of months ago but there never seemed to be a clinic date that worked. At an appointment with our new GP a couple of days ago (we had to find a new local doctor, it's a long and boring story) Dr. M suggested that we get our shots, especially given that Kineret plays havoc with the immune system. She had the vaccine on hand and my daughter and I got our shots at long last.
Another setback. I've gotten my flu shot annually since my daughter was born (I'd been a single mom much of that time and wouldn't have been much use to her if I'd been sick) and never had more of a reaction that a bit of soreness in the arm and a slight fever the next day. This time was quite different (and I can't blame the Kineret, my daughter had a similar reaction and wasn't able to go to school yesterday because of it) - this time we both were lightheaded (to the point of having difficulty standing), nauseated, and generally feeling pretty icky. We're both starting to feel better today, and appreciate this is still much better than having the flu for a week or more.
So after a difficult week, I say the same thing that I say to my husband at the end of every challenging day.
Tomorrow will be better.
After having a great week I think I undid my progress; I ended up in bed for a few days trying not to get my heart too agitated - it really let me know that I had overdone it.
Lesson learned. For now. :-)
Next obstacle was my flu shot. Yes, I should have gotten it a couple of months ago but there never seemed to be a clinic date that worked. At an appointment with our new GP a couple of days ago (we had to find a new local doctor, it's a long and boring story) Dr. M suggested that we get our shots, especially given that Kineret plays havoc with the immune system. She had the vaccine on hand and my daughter and I got our shots at long last.
Another setback. I've gotten my flu shot annually since my daughter was born (I'd been a single mom much of that time and wouldn't have been much use to her if I'd been sick) and never had more of a reaction that a bit of soreness in the arm and a slight fever the next day. This time was quite different (and I can't blame the Kineret, my daughter had a similar reaction and wasn't able to go to school yesterday because of it) - this time we both were lightheaded (to the point of having difficulty standing), nauseated, and generally feeling pretty icky. We're both starting to feel better today, and appreciate this is still much better than having the flu for a week or more.
So after a difficult week, I say the same thing that I say to my husband at the end of every challenging day.
Tomorrow will be better.
Saturday, January 8, 2011
Going Strong!
What an amazing week.
A few days ago I had my first check-up with my doctor since starting Kineret (I should say doctors, there was a quite a parade of them coming in to see how I was doing!)
Although my pericarditis can still be heard through the stethoscope, it was generally agreed that it has become quieter. One cardiologist who's listened several times was sure that it was even undetectable every few heartbeats.
Less bone pain every day. I've even had some completely pain-free days, and I've dropped my pain meds by half - and intend to drop down further over the next week.
The rashes are tolerable, and I've stopped my oral antihistamines. I was given a stronger topical ointment and that seems to be enough.
I can't tell you just how much better I'm feeling as each day goes on. The odd day I've had a setback; it seems that increased sodium intake really doesn't agree with me especially since I've been on Kineret. It throws my heart into an arrhythmia for about twenty four hours but that's fairly easily avoided (but I really had to have that steak wrap last week when we went out for lunch with friends, it's been so long since we'd been out and I'd been craving one since I last visited that restaurant over two years ago!)
This is all great stuff but the real measure of how well I'm doing is what activities I can do now that weren't possible before. Let me sum it up. I shovelled the driveway. Twice this week. And this morning was a pretty heavy snowfall! And not one single twinge from my heart. This may not seem like a huge deal, but for someone who most days had quite a bit of trouble getting up two flights of stairs at once this is of enormous relevance.
Although my doctor is very cautiously optimistic about what Kineret will do, I can't help but be pretty darned excited about how I'm feeling. And I'm feeling hope.
A few days ago I had my first check-up with my doctor since starting Kineret (I should say doctors, there was a quite a parade of them coming in to see how I was doing!)
Although my pericarditis can still be heard through the stethoscope, it was generally agreed that it has become quieter. One cardiologist who's listened several times was sure that it was even undetectable every few heartbeats.
Less bone pain every day. I've even had some completely pain-free days, and I've dropped my pain meds by half - and intend to drop down further over the next week.
The rashes are tolerable, and I've stopped my oral antihistamines. I was given a stronger topical ointment and that seems to be enough.
I can't tell you just how much better I'm feeling as each day goes on. The odd day I've had a setback; it seems that increased sodium intake really doesn't agree with me especially since I've been on Kineret. It throws my heart into an arrhythmia for about twenty four hours but that's fairly easily avoided (but I really had to have that steak wrap last week when we went out for lunch with friends, it's been so long since we'd been out and I'd been craving one since I last visited that restaurant over two years ago!)
This is all great stuff but the real measure of how well I'm doing is what activities I can do now that weren't possible before. Let me sum it up. I shovelled the driveway. Twice this week. And this morning was a pretty heavy snowfall! And not one single twinge from my heart. This may not seem like a huge deal, but for someone who most days had quite a bit of trouble getting up two flights of stairs at once this is of enormous relevance.
Although my doctor is very cautiously optimistic about what Kineret will do, I can't help but be pretty darned excited about how I'm feeling. And I'm feeling hope.
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