OK, so I had a little cyber freak out on my last post. I am a little embarrassed but I stand by my opinion. I might have presented it a little better but it still makes me angry.
Now to change the mood a little.
I just saw my super rheumy, Dr. Yacyshyn and guess what.... the first Vasculitis Clinic in Western Canada is up and running. She did it!!!! So first Monday of each month at the University of Alberta there is a Vasculitis Clinic. If you want to go, you need a referral from your GP and a transfer of records from your rheumatologist or medical quarterback for your disease (nephrologist, respirologist, neurologist.... you get the jist). This is so cool and such a huge difference from the void two years ago when I got diagnosed.
As for me. On paper I look 'beautiful' according to Dr. Y. And I do. My liver function is elevated but nothing to freak out about, but other than that I look like a rock star (actually with the elevated liver functions I probably look more like a rock star.) The problems I'm dealing with now are drug related. Weaning off the stupid pred is so much harder and so much more than I ever imagined. It's done a number on my brain as well because I ASSUMED that as you get closer to normal functioning and closer to remission things should get better not worse. Trying to get off the pred makes things worse. But like everything else in life, just gotta bite the bullet and put my big girl panties on and suck it up. After a quick calculation today I figured that if things go smooth and there are no complications or issues I can be off the pred by March 2013. That'll be right after our next Pajama Day....
On another unrelated note, Dr. Yacyshyn gave me a tip for a great pediatric vasculitis doctor in Eastern Canada for those of you who have been reading this blog and are the parents of kids with Wegener's. Her name is Dr. Suzanne Benseler and she comes highly recommended by my super doc.
Wegener's Granulomatosis. A rare auto-immune disease affecting 1 in 30,000 to 40,000 lucky winners. I'm one of those winners. Diagnosed in May 2010, life has changed dramatically in some cases for the worse and in some for the better. This is where I ramble on about my observations with this new friend called Wegener's - which makes me a Weggie (pronounced 'weg-ee')
Thursday, May 24, 2012
Thursday, May 17, 2012
A little red cheeked
I feel a little embarrassed for not posting for so long, but I have a reason. I also have a reason for getting on here right now... all in due time.
My reason for being absent is that I am getting a full on '$#!^ kicking' while weaning off the pred. I must admit it was at its worst when I went down from 7mg. You've already read that if you hang out here, but it really did a number on my body, my brain, and my emotions. I don't know, am I wrong to assume that as you're getting off the meds things should actually be on an improvement tangent? Well, it's not that way with pred. My wretched life saver. For all the good it's done in keeping me upright and alive, it sure has a heavy price to pay. I am now at 5.5mg (taking .5mg off each month) and according my my super doc, the adrenals don't start waking up until you're at 5mg.
There are so many thoughts that I have been wrestling with (nothing scary) and as I sit here and write on this blog again, I really want to share them all, but then it would turn out to be yet another novel type entry, and I wont subject you to that.
I am writing for a reason though. I just heard a story that shook me to the core. Reinforced the idea that I'm one of the lucky ones because I'm still here - raising shit, and causing all kinds of trouble. Apparently though that's not enough, I need to stir the pot more, and more and more, until there are no more senseless deaths from this stupid disease. I think one of our biggest problems and obstacles is the fact that a) this is a rare disease that masquerades itself as a common cold, or flu, or chest infection, or ear infection, or eye infection or throat infection... and regular doctors who either missed rare disease day in med school or are not listening to their patients and treating them like a hypochondriac or just another number or means to a living for them are missing diagnosis and in some cases letting people die. It makes me so so very angry, I wish I could explain it in words how this gets me to the core. Another problem is that kids are dying undiagnosed because the doctors that might know this disease from a textbook would think that it's a disease for people in their fourth or fifth decade of life. Well Charlie, that's not the case anymore. If you check out the results from the Weggie Survey http://www.surveymonkey.com/sr.aspx?sm=AM6V2vmqXHqrfPSiPOnMyWV2OS9Pkj9rURwq96ekw28_3d - out of the 741 Weggies that have answered, 10 are under the age of 12years old and 81 are between 13 years old and 20 years old. That's 91 kids that if they ended up under the wrong doctor might have died. I just read a story of a 17 year old in UK dying from it, getting tossed back and forth between doctors and told there's nothing wrong with her, she ended up in a coma and then passing away a day before they were going to give her plasmapheresis, I know of a two year old diagnosed with WG and now today I heard another horrible story very similar to that of the 17 year old in the UK, but this one is way closer to home. It absolutely infuriates me. This is a scary but treatable disease, and people should not be dying because of lack of treatment. Since diagnosis two years ago, I've heard of at least 10 people dying from it, and most of these cases are either due to under-treatment, over-treatment, or complications from the treatment.
I find it so strange that in order to survive you have to be lucky enough to land in the lap of the right doctor or team of doctors. We're super unlucky to get the disease in the first place if you look at the stats, so luck at that point is not really on our sides. I have now met too many people dealing with docs who don't care, don't try and make them feel like horrible people for complaining about the pain that comes along with this. And if you haven't been there, let me tell you it's a doozey. So what do we do to eliminate the survival rate that's dependent on chance? I'm so crazy lucky to have landed in the lap of Dr. Zia and his team, and now to have Dr. Yacyshyn who is the best thing to come my way since diagnosis.
What do we need to do to take this horrible thing and use it to make a change for the better? How do we save more people from ending up on the wrong end of the life spectrum? I will not rest until I see something positive and good, not just for my family but for many people, come out of this. I promise.
2 hours later: I have now thought about it for a bit and let myself cool down from being so upset, so I have to say that I get it from the doc's perspectives. They are regular people like everyone else, and in the experience of their career if someone presented with said symptoms, of course you'd go for the most common of possibilities when diagnosing. But I think if you see someone keep coming back with the same symptoms and they're not responding to any treatment, and the person is deteriorating in front of your very eyes, then it's one of those moments when you as a doc need to dig deeper and help that person get well, find a diagnosis and get them to the right experts. What also irks me is specialists who refuse to consult, to listen to symptoms and treat someone with a life threatening disease like any other patient dealing with inflammatory issues. This is where under and over treatment come in. I'm watching a friend right now dissolve while her specialist is dilly-dallying and ignoring her and has her on the most insane pred wean regime I've ever heard of for a WG patient. If you scour the forums, you'll quickly learn that too quick a pred wean is a very likely suspect in triggering flares. From listening to her symptoms I'm so worried that she is in the midst of a flare and her support system (medical) is a little shaky with the main wheel missing three and a half bolts.
But for the regular docs out there dealing with millions of colds and flues and chest infections, and ear infections, I don't begrudge you, you are working a hard job and it's so very repetitive. I would also be going to the most obvious answer first, but when the patient keeps coming back and back and back, take notice.
My reason for being absent is that I am getting a full on '$#!^ kicking' while weaning off the pred. I must admit it was at its worst when I went down from 7mg. You've already read that if you hang out here, but it really did a number on my body, my brain, and my emotions. I don't know, am I wrong to assume that as you're getting off the meds things should actually be on an improvement tangent? Well, it's not that way with pred. My wretched life saver. For all the good it's done in keeping me upright and alive, it sure has a heavy price to pay. I am now at 5.5mg (taking .5mg off each month) and according my my super doc, the adrenals don't start waking up until you're at 5mg.
There are so many thoughts that I have been wrestling with (nothing scary) and as I sit here and write on this blog again, I really want to share them all, but then it would turn out to be yet another novel type entry, and I wont subject you to that.
I am writing for a reason though. I just heard a story that shook me to the core. Reinforced the idea that I'm one of the lucky ones because I'm still here - raising shit, and causing all kinds of trouble. Apparently though that's not enough, I need to stir the pot more, and more and more, until there are no more senseless deaths from this stupid disease. I think one of our biggest problems and obstacles is the fact that a) this is a rare disease that masquerades itself as a common cold, or flu, or chest infection, or ear infection, or eye infection or throat infection... and regular doctors who either missed rare disease day in med school or are not listening to their patients and treating them like a hypochondriac or just another number or means to a living for them are missing diagnosis and in some cases letting people die. It makes me so so very angry, I wish I could explain it in words how this gets me to the core. Another problem is that kids are dying undiagnosed because the doctors that might know this disease from a textbook would think that it's a disease for people in their fourth or fifth decade of life. Well Charlie, that's not the case anymore. If you check out the results from the Weggie Survey http://www.surveymonkey.com/sr.aspx?sm=AM6V2vmqXHqrfPSiPOnMyWV2OS9Pkj9rURwq96ekw28_3d - out of the 741 Weggies that have answered, 10 are under the age of 12years old and 81 are between 13 years old and 20 years old. That's 91 kids that if they ended up under the wrong doctor might have died. I just read a story of a 17 year old in UK dying from it, getting tossed back and forth between doctors and told there's nothing wrong with her, she ended up in a coma and then passing away a day before they were going to give her plasmapheresis, I know of a two year old diagnosed with WG and now today I heard another horrible story very similar to that of the 17 year old in the UK, but this one is way closer to home. It absolutely infuriates me. This is a scary but treatable disease, and people should not be dying because of lack of treatment. Since diagnosis two years ago, I've heard of at least 10 people dying from it, and most of these cases are either due to under-treatment, over-treatment, or complications from the treatment.
I find it so strange that in order to survive you have to be lucky enough to land in the lap of the right doctor or team of doctors. We're super unlucky to get the disease in the first place if you look at the stats, so luck at that point is not really on our sides. I have now met too many people dealing with docs who don't care, don't try and make them feel like horrible people for complaining about the pain that comes along with this. And if you haven't been there, let me tell you it's a doozey. So what do we do to eliminate the survival rate that's dependent on chance? I'm so crazy lucky to have landed in the lap of Dr. Zia and his team, and now to have Dr. Yacyshyn who is the best thing to come my way since diagnosis.
What do we need to do to take this horrible thing and use it to make a change for the better? How do we save more people from ending up on the wrong end of the life spectrum? I will not rest until I see something positive and good, not just for my family but for many people, come out of this. I promise.
2 hours later: I have now thought about it for a bit and let myself cool down from being so upset, so I have to say that I get it from the doc's perspectives. They are regular people like everyone else, and in the experience of their career if someone presented with said symptoms, of course you'd go for the most common of possibilities when diagnosing. But I think if you see someone keep coming back with the same symptoms and they're not responding to any treatment, and the person is deteriorating in front of your very eyes, then it's one of those moments when you as a doc need to dig deeper and help that person get well, find a diagnosis and get them to the right experts. What also irks me is specialists who refuse to consult, to listen to symptoms and treat someone with a life threatening disease like any other patient dealing with inflammatory issues. This is where under and over treatment come in. I'm watching a friend right now dissolve while her specialist is dilly-dallying and ignoring her and has her on the most insane pred wean regime I've ever heard of for a WG patient. If you scour the forums, you'll quickly learn that too quick a pred wean is a very likely suspect in triggering flares. From listening to her symptoms I'm so worried that she is in the midst of a flare and her support system (medical) is a little shaky with the main wheel missing three and a half bolts.
But for the regular docs out there dealing with millions of colds and flues and chest infections, and ear infections, I don't begrudge you, you are working a hard job and it's so very repetitive. I would also be going to the most obvious answer first, but when the patient keeps coming back and back and back, take notice.
Sunday, April 29, 2012
Celebrating the small victories
Who would have thunk that something as little and seemingly insignificant as one's Eustachian tubes would generate so much joy. Well, they have in my case.
I had completely given up on my sad little Eustachian tubes but I just found out from my ENT that the tube in my right ear has gone the way of the Dodo, and now while I enjoy the sunny world of my most therapeutic place on earth, my second ear is fixing itself up. I can once again whistle out my left ear (the one that still has a functioning tube left in the eardrum) which means that my Eustachian tubes are no longer inflamed shut... a condition I was certain would be with me for the rest of my life. The joy from this one turn of events is so tremendous and a tiny little sign that things are moving in the right direction that I've been so happy and not focusing on the horrible feeling of trying to get of the prednisone.
I'm still at 6mg about to go down to 5-6 alternating in about a week and I dread the next phase of feeling like a useless bag of poo, however I am treading in the pool of joy over the Eustachian tube development...and did I mention I can whistle out my ear... how's that for a killer party trick.
I had completely given up on my sad little Eustachian tubes but I just found out from my ENT that the tube in my right ear has gone the way of the Dodo, and now while I enjoy the sunny world of my most therapeutic place on earth, my second ear is fixing itself up. I can once again whistle out my left ear (the one that still has a functioning tube left in the eardrum) which means that my Eustachian tubes are no longer inflamed shut... a condition I was certain would be with me for the rest of my life. The joy from this one turn of events is so tremendous and a tiny little sign that things are moving in the right direction that I've been so happy and not focusing on the horrible feeling of trying to get of the prednisone.
I'm still at 6mg about to go down to 5-6 alternating in about a week and I dread the next phase of feeling like a useless bag of poo, however I am treading in the pool of joy over the Eustachian tube development...and did I mention I can whistle out my ear... how's that for a killer party trick.
Sunday, March 25, 2012
Worm hole
I feel like I've been stuck in a worm hole and time has taken on a whole new quality. It seems to be flying by at phenomenal speeds and I'm just stuck watching it warp by.
I've been conspicuously absent from here and the Common Thread blog and have been thinking about getting on and writing my ever present swirling thoughts down but these impulses to write always hit me in the middle of the night when it would be completely not feasible to get up and start things up while the rest of the family is in their fragile sleep mode.
I pulled through the first annual Pajama Day and it was a screaming success. I spent most of the day on February 29th covered in goosebumps and on the verge of tears, completely overwhelmed by the support and sportsmanship of my beautiful community. I put on my PJ's (my going out PJ's) that morning and dressed Hana in hers hoping that there would be at least one other person out there wearing theirs. Well to my complete shock and surprise, I got to the school and saw a number of the parents dropping off their PJ clad kids while wearing their own PJ's. The feeling and PJ wearers just snowballed from that point on. It was a magical day. Truly.
I spent most of the energy I had stored for the whole month on that one day but it was so totally worth it. I've been sick with a cold since then and it's just now starting to go away but again, worth it. People are telling me how wearing their PJ's all day changed their perspective in so many different positive ways.
My other issue right now is that I'm weaning off the pred, and it's lower than what my body makes but higher than what is needed to get the adrenals to even start waking up, let alone making their own corticosteroids. Soooo, the crappy side of this equation is that I wake up with no energy and the energy levels just drop from that point on throughout the day. There are also constant aches and pains throughout my body - all the time - that I am attributing directly to the wean. I think the disease is at bay now - I'm scared I might jinx it by saying so because this stupid disease can turn on you at a moment's notice. I have this feeling now in my brain that the pred wean might be one of the more difficult things throughout this process. I can really feel it, and I know that if you misjudge it by even a little bit you can set of a flare and be back at square one within a week. It's happened to a Weggie friend, and I do NOT want to go down that road.
There, I just got my mandatory whining in - sorry. I try very hard to keep my wa-wa's to myself, but I assume that there are other Weggies reading this and it might be something they might also be feeling and would want to know that it's not the exception but more the norm.
I've been conspicuously absent from here and the Common Thread blog and have been thinking about getting on and writing my ever present swirling thoughts down but these impulses to write always hit me in the middle of the night when it would be completely not feasible to get up and start things up while the rest of the family is in their fragile sleep mode.
I pulled through the first annual Pajama Day and it was a screaming success. I spent most of the day on February 29th covered in goosebumps and on the verge of tears, completely overwhelmed by the support and sportsmanship of my beautiful community. I put on my PJ's (my going out PJ's) that morning and dressed Hana in hers hoping that there would be at least one other person out there wearing theirs. Well to my complete shock and surprise, I got to the school and saw a number of the parents dropping off their PJ clad kids while wearing their own PJ's. The feeling and PJ wearers just snowballed from that point on. It was a magical day. Truly.
I spent most of the energy I had stored for the whole month on that one day but it was so totally worth it. I've been sick with a cold since then and it's just now starting to go away but again, worth it. People are telling me how wearing their PJ's all day changed their perspective in so many different positive ways.
My other issue right now is that I'm weaning off the pred, and it's lower than what my body makes but higher than what is needed to get the adrenals to even start waking up, let alone making their own corticosteroids. Soooo, the crappy side of this equation is that I wake up with no energy and the energy levels just drop from that point on throughout the day. There are also constant aches and pains throughout my body - all the time - that I am attributing directly to the wean. I think the disease is at bay now - I'm scared I might jinx it by saying so because this stupid disease can turn on you at a moment's notice. I have this feeling now in my brain that the pred wean might be one of the more difficult things throughout this process. I can really feel it, and I know that if you misjudge it by even a little bit you can set of a flare and be back at square one within a week. It's happened to a Weggie friend, and I do NOT want to go down that road.
There, I just got my mandatory whining in - sorry. I try very hard to keep my wa-wa's to myself, but I assume that there are other Weggies reading this and it might be something they might also be feeling and would want to know that it's not the exception but more the norm.
Wednesday, February 22, 2012
Sorry bout my absence
Wowee.... So all of this time that I've had a secret little hate-on for pred (yes, I know it's keeping me alive, but I still have a little love-hate relationship with it) all of the sudden I'm feeling an appreciation of the magical elixir properties of the wretched drug. As I posted earlier I had gone down to 6mg a week after my last infusion. Well, holy crap. I've been dragging my ars around like it weighs a ton (it's up there compared to old 'normal' but it's not at a ton yet.) I haven't felt so tired and lacking energy as I have the last few weeks. I had no idea how much energy pred gives you in your day (again I knew this but was avoiding thinking about it - our bodies produce about 7-10mg of the equivalent corticosteroids that pred gives you but your adrenals don't start to wake up until you're at about 5mg, so until they wake up, you're (I'm) functioning at an energy deficit - big time.) Thankfully my wonderful doc happened to be on here and noticed that and gave me a call to say 'let's try something a tad more conservative' - apparently at these lower doses 1mg is a big drop - I knew that but was trying to see if I can be one of the magic ones who pulls it off.
No way!
So now I'm doing one day 6mg one day 7mg for a month, then 6mg for a month, then 6mg one day 5mg the next for another month and I go and see my super doc so we can assess further. I find it trickier now with the pred wean than it was just dealing with taking all the sick drugs. Ughhh. But I'm moving in the right direction and keeping my mind focused on some other stuff - which for me is very therapeutic.
Now, I got a couple of stories from two more amazing fighters. Thanks you guys. I'll post them in the next day or two (unless I manage to sneak that in today). Thank you from the bottom of my heart for sharing your stories. I've received feedback that the stories on here are helping others who have been diagnosed, so we're accomplishing the overarching goal - thanks to you!
No way!
So now I'm doing one day 6mg one day 7mg for a month, then 6mg for a month, then 6mg one day 5mg the next for another month and I go and see my super doc so we can assess further. I find it trickier now with the pred wean than it was just dealing with taking all the sick drugs. Ughhh. But I'm moving in the right direction and keeping my mind focused on some other stuff - which for me is very therapeutic.
Now, I got a couple of stories from two more amazing fighters. Thanks you guys. I'll post them in the next day or two (unless I manage to sneak that in today). Thank you from the bottom of my heart for sharing your stories. I've received feedback that the stories on here are helping others who have been diagnosed, so we're accomplishing the overarching goal - thanks to you!
Monday, February 6, 2012
Another Weggie Story
I have just added another story to the Weggie Stories page. Thank you Ian for sharing your story with everyone. I know it's a little tough putting yourself out there, but it gets easier and even moreso when you know that perhaps it might help someone who's just starting on this journey.
I've been trying to take a few days and spend my precious spoons on myself and my family. Easier said than done but I'm trying.
I'll get back on in a day or two. Feeling like I'm in overdaft on the spoons right now.
I've been trying to take a few days and spend my precious spoons on myself and my family. Easier said than done but I'm trying.
I'll get back on in a day or two. Feeling like I'm in overdaft on the spoons right now.
Wednesday, February 1, 2012
Strange Sounds
What's that strange sound I'm hearing? Oh it's the sound of the snowball rolling down the mountain. It's the Find the Common Thread Pajama Day snowball and I'm loving what's happening. LOVING IT! So keep it going friends. Start a little 'viral' PJ oriented activity in your neck of the woods to raise awareness for autoimmunity (nothing crazy though, when I say viral I mean through the web and word of mouth - just to be clear.) Find others hiding their pain in secret (or not so secret if you're me) not knowing how many of their friends are doing just the same. Lets all get together and stand up for the most neglected disease group out there - autoimmunity. Stand up in your PJ's on the 29th. Colour your finger red and make a fashion statement for Autoimmunity. We can post our pics and video here or on www.findthecommonthread.com - When this is bigger than any of us imagined, we can all say that we were there when it started.
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