So I am on what I am guessing is the largest email list that caters to people suffering from Mast Cell Disorders.
Depending on who you talk to, depending on what literature your read, there are a myriad of disorders, multiple diagnostic criteria, and multiple treatments.
The list for those who don't know (but then you probably aren't reading this)
* Systemic Mastocytosis (with or without cutaneous manifestations such as Urticaria Pigmentosa)
o Aggressive Mastocytosis
o Indolent Mastocytosis
o Mastocytosis with associated Hematologic Disorder
o Mast Cell Leukemia
* Cutaneous Mastocytosis
o Urticaria Pigmentosa (UP)
o Telengiecstasia Macularis Eruptive Perstans (TMEP)
* Mast Cell Activation Syndrome/ Disorder
* Idiopathic Anaphylaxis
(I'm leaving out the pediatric illnesses since children probably aren't reading my blog, and little of what I post here is relevant to the parents of children suffering from pediatric mast cell diseases)
So, we have all these categories and sub categories and suddenly it's become some sort of (and pardon my vulgarity here) dick waving competition to see who is suffering the most or whose diagnosis is the most valid. It's ridiculous. I personally got attacked by at least one member when I mentioned my status (ISM) and then mentioned I had not had a bone marrow biopsy. My doctor (Dr. Castells) is one of the leading researchers and physicians in the country for this disease, and she felt that a) all my blood, urine, and skin biopsies were proof positive and b) I was not physically stable enough to undergo a test that would not change my treatment protocol. In addition I went and got second and third opinions from 2 other mast cell disease specialists in the area, and also had Dr. Castell's mentor review my files. Every single one said the same thing, Indolent Systemic Mastocytosis, and every one agreed that the BMB seemed unnecessary at this time. (for the record I also got the ISM diagnosis from a dermatologist and the mast cell disease specialist from a different hospital before being referred to Dr. Castells)
All of this was not good enough for this woman, who seemed to imply I was malingering or that my diagnosis was not valid enough for her. What the fuck? Who is she (or anyone else) to judge what I've been told by leaders in their fields? Does my non BMB followed up diagnosis somehow dilute the mast cell suffering gene pool? Is our mailing list becoming some sort of fucked up eugenics in reverse?
Now there are people stating they are not welcome to support groups because they have a variant some people don't believe in, or having their diagnosis disregarded by other (potentially higher ranking) list members.
This all seems so absolutely goddamned stupid to me. It would be one thing is someone showed up on the mailing list saying, "man I have wicked hayfever, I can totally relate to what you guys are going through" or "man I stubbed my toe and chipped a nail, I totally know what it feels like to have osteoporosis at 30 to such an extent that when you stubbed your toe you broke it in half"
It's just so incredibly frustrating to see people denigrating each other's experiences with this disease because they do not match their own personal definition. We're all suffering and it's no one's job to try to corner the market on it (unless you have mast cell leukemia, in which case my heart goes out to you).
This could be a lot more eloquent and well thought out, but it just bugs me to see this perceived hierarchy of validation of suffering take place. It also bothers me to see this working to splinter what I find (or have found since lately it's been pissing me off) to be a very valuable resource in terms of dealing with this disease.
Sunday, August 24, 2008
Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties
I sat down to read this book at 4am, and at 5:49 I have just finished it. I was afraid it was going to be either an overly saccharine chipper self help book rife with the "buck up little campers, we can overcome our various plights" attitude, or another "woe is me, the medical industry has failed me as badly as genetics have" (the only book I've ever read from a patient's perspective who suffered from Mastocytosis was very bitter in some ways. I have no doubt it was cathartic for the author, and in turn cathartic for many of the readers, but something about it sat wrong with me. I think I was looking for answers in it that weren't there. Another concern I had about this book (especially since the author is around my age and went to my college is that I'd think, "hell I could've written this if I'd felt so self indulgent", since so many memoirs lately read like they were written by 6th graders)
But instead I found a well written, well researched book with a myriad of strong (predominantly female, which for me was comforting, however I would've liked to see a bit more gender diversity both for male readers as well as to dispell the whole frail woman thing) voices covering the basics of life with a chronic and incurable illness.
However, what made this book different, tolerable, hell actually enjoyable was the strength in it. No blithe optimism that we're all gonna get cured next year or anything like that. Just a lot of strength, honesty, candor, situations I could relate to, and resources for myself and my husband.
The author and her comrades discuss their various illnesses with a calm acceptance and honesty I found really refreshing. These people seemed to accept and understand what chronic illness meant in terms of shaping their young lives in both the long and short term, and while they were not ok with it, they also didn't appear bitter. They seemed intent on living. It just aligned very strongly with things I've felt and the outlook I have.
I truly think that anyone with a chronic illness should read this book, and in turn I think their spouses should too (or at least the last few chapters that deal predominantly with relationship-centric stuff)
Here it is on Amazon
But instead I found a well written, well researched book with a myriad of strong (predominantly female, which for me was comforting, however I would've liked to see a bit more gender diversity both for male readers as well as to dispell the whole frail woman thing) voices covering the basics of life with a chronic and incurable illness.
However, what made this book different, tolerable, hell actually enjoyable was the strength in it. No blithe optimism that we're all gonna get cured next year or anything like that. Just a lot of strength, honesty, candor, situations I could relate to, and resources for myself and my husband.
The author and her comrades discuss their various illnesses with a calm acceptance and honesty I found really refreshing. These people seemed to accept and understand what chronic illness meant in terms of shaping their young lives in both the long and short term, and while they were not ok with it, they also didn't appear bitter. They seemed intent on living. It just aligned very strongly with things I've felt and the outlook I have.
I truly think that anyone with a chronic illness should read this book, and in turn I think their spouses should too (or at least the last few chapters that deal predominantly with relationship-centric stuff)
Here it is on Amazon
Tuesday, August 19, 2008
Vanishing Spots?
Over the past few days I've noticed that a few of my more prominent UP seem to have vanished. I don't know if this is the result of getting sun or something more nefarious going on. I have to admit I have not been feeling my best, but I think the insane New England weather is probably more to blame than the disappearance of a few spots.
When I had my tryptase done in May it was I think 2 points higher than it had been the previous year, and my urine histamine was -way- down. Due to these results, Dr. Castells felt that the chances of this turning aggressive were slim to none. I only bring that part up because I have read many conflicting things regarding spots and whether their presence is foreboding or positive.
I've got an appointment to see Dr. Castells on the 11th so I will obviously be going over this with her since it is very curious to say the least. I'm still new enough to masto that I have no idea if this is commonplace or not.
When I had my tryptase done in May it was I think 2 points higher than it had been the previous year, and my urine histamine was -way- down. Due to these results, Dr. Castells felt that the chances of this turning aggressive were slim to none. I only bring that part up because I have read many conflicting things regarding spots and whether their presence is foreboding or positive.
I've got an appointment to see Dr. Castells on the 11th so I will obviously be going over this with her since it is very curious to say the least. I'm still new enough to masto that I have no idea if this is commonplace or not.
Wednesday, August 13, 2008
reusable water bottles
I drink a lot of distilled water, and I tend to carry it around with me to. in an effort to lesson my ecological footprint, i'd like to get a reusable water bottle.
I've heard stories that some of the plastic ones have carcinogens in them (and i have enough to worry about thnx), the metal ones are very expensive (and for some reason metal kind of creeps me out)
So I was wondering if anyone here had an opinion? Brands, types of plastic to avoid?
I've heard stories that some of the plastic ones have carcinogens in them (and i have enough to worry about thnx), the metal ones are very expensive (and for some reason metal kind of creeps me out)
So I was wondering if anyone here had an opinion? Brands, types of plastic to avoid?
Monday, August 4, 2008
faith
So, I'm on this mailing list that deals with mastocytosis (which no doubt many of the readers of this blog are on too) Recently a conversation came up, and I feel I might've been a little trigger happy in trying to quell it, but it happened, and it kind of pisses me off.
Discussion went towards evolutionary theory of diseases, and it was mentioned that we are descended from apes. The minute I saw that I started to get anxious since I knew that some people with a creationist viewpoint would no doubt find offense to this.
It's interesting, I feel like under the Bush administration that the whole creationism/intelligent design/evolutionary theory discussion has taken on a much harsher tone than it had when I was younger. It seemed like there was a time when all of these theories could exist with far less acrimony than they do now, but maybe that was me. I don't see how my believing in evolution is personally offensive to someone who believes in creationism, and if the roles were reversed, I don't see it being much different. I respect people's beliefs to have faith in whatever they want to, but I also think that people should respect others beliefs not to have beliefs. If I were a hardline atheist, I wouldn't find someone's belief in god offensive. What bothers me is that the reverse rarely seems true. Instead of having an intelligent or level headed discussion it just seems to be "Fuck you you don't share my faith and therefore your perspective is invalid/uninformed/irrelevant/inferior and therefore unworthy of discussion." and if anything that seems entirely unchristian.
I was raised Catholic, however my faith took a great shaking over a few things. There was a situation involving me that was handled very poorly by my church, and later on we had our own sex abuse scandal that came years before the one that rocked the Boston Archdiocese a few years ago. These events didn't necessarily shake my belief in spirituality, but they absolutely muddled my feelings regarding organized religion. whether you believe in god, nothing, the individual, a collective conscious...It is easy to find comfort in some greater design vs. arbitrary actions, but I also consider myself to be fairly science minded.
These feelings were further cemented when I traveled through Austria, and saw the Melk Abbey, a building of extreme wealth and prosperity, where only a few miles away was KZ Mauthausen, one of the more infamous death camps. Somehow the juxtaposition of the lush Abbey being so close to a place of such death and suffering made me uncomfortable. Walls gilded with gold flanked by walls lines with crematoriums. It was an experience that really changed my life, wandering around the empty camp on a slate gray afternoon when only a few hours I'd been in the presence of a Gutenberg bible and more gold and relics than one could imagine.
This isn't to say I want to entirely discount duality. I was in the room with my grandmother when she died. It was, sadly, a gruesome death. She'd been on a respirator for a month and the damage that does to an 82 year old's lungs is irreparable, especially when they have emphysema. We had gotten a phone call that afternoon from the hospital saying she was dying, that they felt her death was imminent. My father was out that afternoon picking up some FAFSA documentation for college for me, and we couldn't find him to drive us to the hospital. Under normal circumstances we would've made it there in under 10 minutes, this day it took about 90.
We got to her room, and one of her lungs had burst or something, and there was this dark, dead, thick blood streaming from her nose and her mouth. Even still, she was my grandmother and I loved her more than anything in the world and she was still beautiful to me. Seeing her in that shape was too much for me, and I went down. My mother, in one of the greatest examples of strength I've seen in a person was able to look past the blood, look past the suffering, walked up to her mother, held her hand, and told her she loved her. Her sentence was punctuated by the shrill constant beep of the heart monitor flat lining. It was as if she'd held on, far past the point that any human would want to, to say goodbye. One can easily argue it was coincidence, timing, whatever. All I know is that it genuinely felt like some part of her knew we weren't there, and wouldn't leave until we were.
They ushered us out of the room and cleaned her up, removed the tubes and let us back in to pay our final regards. I remember looking at her, cleaned and bathed, not covered in blood, her features smoothed out of the grimace of pain she'd previously held...and it meant nothing to me. It was a shell. It wasn't -her-. She was still warm, it had been only moments, but something irrevocable had changed in that instant. She went from being one of the most important people in my life to just...a husk. I wanted to find comfort in stroking her face or holding her hand, but I couldn't.
-----------------------------------------
I'm not sure what I'm trying to get at. I am jealous of people who have unwavering faith in a supreme being that looks out for us, that created us in some divine image. However, with all the pain and suffering and unfairness in this world, it's difficult to, before one even takes into account the vast amount of science based evidence to the contrary that is far more dense and difficult for one to sort out than the bible. I worry that many people who are sick are reaching out to faith for something to hold on to, almost like a bartering system. Like, if we're good enough, pious enough, devout enough, that maybe God will take mercy on us and fix whatever is wrong with us. I'm not saying that this is the case for the bulk of religious people, and I'm not trying to make a gross generalization, because I'm not, I am not even saying this applies to anyone I know, either from the list or in real life.
It just bothers me that we cannot simply take comfort in our own faith and simultaneously respect the faiths or beliefs of others without taking it as a personal affront. I have friends who are born again, uu's, hindu, pagan, catholic, and we are all able to coexist peacefully and happily and respectfully, something I feel was sorely lacking in the exchange on the list over the past few days, and that makes me sad.
I believe in the sun even when it is not shining.
I believe in love even when feeling it not.
I believe in God even when God is silent.
-this was found written on the wall of a basement in Köln Germany in the aftermath of WW2, most likely by holocaust survivors. I guess it is fitting in a way to what I'm saying, or not saying.
Discussion went towards evolutionary theory of diseases, and it was mentioned that we are descended from apes. The minute I saw that I started to get anxious since I knew that some people with a creationist viewpoint would no doubt find offense to this.
It's interesting, I feel like under the Bush administration that the whole creationism/intelligent design/evolutionary theory discussion has taken on a much harsher tone than it had when I was younger. It seemed like there was a time when all of these theories could exist with far less acrimony than they do now, but maybe that was me. I don't see how my believing in evolution is personally offensive to someone who believes in creationism, and if the roles were reversed, I don't see it being much different. I respect people's beliefs to have faith in whatever they want to, but I also think that people should respect others beliefs not to have beliefs. If I were a hardline atheist, I wouldn't find someone's belief in god offensive. What bothers me is that the reverse rarely seems true. Instead of having an intelligent or level headed discussion it just seems to be "Fuck you you don't share my faith and therefore your perspective is invalid/uninformed/irrelevant/inferior and therefore unworthy of discussion." and if anything that seems entirely unchristian.
I was raised Catholic, however my faith took a great shaking over a few things. There was a situation involving me that was handled very poorly by my church, and later on we had our own sex abuse scandal that came years before the one that rocked the Boston Archdiocese a few years ago. These events didn't necessarily shake my belief in spirituality, but they absolutely muddled my feelings regarding organized religion. whether you believe in god, nothing, the individual, a collective conscious...It is easy to find comfort in some greater design vs. arbitrary actions, but I also consider myself to be fairly science minded.
These feelings were further cemented when I traveled through Austria, and saw the Melk Abbey, a building of extreme wealth and prosperity, where only a few miles away was KZ Mauthausen, one of the more infamous death camps. Somehow the juxtaposition of the lush Abbey being so close to a place of such death and suffering made me uncomfortable. Walls gilded with gold flanked by walls lines with crematoriums. It was an experience that really changed my life, wandering around the empty camp on a slate gray afternoon when only a few hours I'd been in the presence of a Gutenberg bible and more gold and relics than one could imagine.
This isn't to say I want to entirely discount duality. I was in the room with my grandmother when she died. It was, sadly, a gruesome death. She'd been on a respirator for a month and the damage that does to an 82 year old's lungs is irreparable, especially when they have emphysema. We had gotten a phone call that afternoon from the hospital saying she was dying, that they felt her death was imminent. My father was out that afternoon picking up some FAFSA documentation for college for me, and we couldn't find him to drive us to the hospital. Under normal circumstances we would've made it there in under 10 minutes, this day it took about 90.
We got to her room, and one of her lungs had burst or something, and there was this dark, dead, thick blood streaming from her nose and her mouth. Even still, she was my grandmother and I loved her more than anything in the world and she was still beautiful to me. Seeing her in that shape was too much for me, and I went down. My mother, in one of the greatest examples of strength I've seen in a person was able to look past the blood, look past the suffering, walked up to her mother, held her hand, and told her she loved her. Her sentence was punctuated by the shrill constant beep of the heart monitor flat lining. It was as if she'd held on, far past the point that any human would want to, to say goodbye. One can easily argue it was coincidence, timing, whatever. All I know is that it genuinely felt like some part of her knew we weren't there, and wouldn't leave until we were.
They ushered us out of the room and cleaned her up, removed the tubes and let us back in to pay our final regards. I remember looking at her, cleaned and bathed, not covered in blood, her features smoothed out of the grimace of pain she'd previously held...and it meant nothing to me. It was a shell. It wasn't -her-. She was still warm, it had been only moments, but something irrevocable had changed in that instant. She went from being one of the most important people in my life to just...a husk. I wanted to find comfort in stroking her face or holding her hand, but I couldn't.
-----------------------------------------
I'm not sure what I'm trying to get at. I am jealous of people who have unwavering faith in a supreme being that looks out for us, that created us in some divine image. However, with all the pain and suffering and unfairness in this world, it's difficult to, before one even takes into account the vast amount of science based evidence to the contrary that is far more dense and difficult for one to sort out than the bible. I worry that many people who are sick are reaching out to faith for something to hold on to, almost like a bartering system. Like, if we're good enough, pious enough, devout enough, that maybe God will take mercy on us and fix whatever is wrong with us. I'm not saying that this is the case for the bulk of religious people, and I'm not trying to make a gross generalization, because I'm not, I am not even saying this applies to anyone I know, either from the list or in real life.
It just bothers me that we cannot simply take comfort in our own faith and simultaneously respect the faiths or beliefs of others without taking it as a personal affront. I have friends who are born again, uu's, hindu, pagan, catholic, and we are all able to coexist peacefully and happily and respectfully, something I feel was sorely lacking in the exchange on the list over the past few days, and that makes me sad.
I believe in the sun even when it is not shining.
I believe in love even when feeling it not.
I believe in God even when God is silent.
-this was found written on the wall of a basement in Köln Germany in the aftermath of WW2, most likely by holocaust survivors. I guess it is fitting in a way to what I'm saying, or not saying.
Subscribe to:
Posts (Atom)
