Sunday, August 24, 2008

#@#@#$

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.

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

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.

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?

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.

Monday, July 28, 2008

are you normal?

sorry for the obtuse "neds atomic dustbin" reference in the subject line. i am after all a child of the 90's. (i am also a child who doesn't feel like using the shift key tonight, even though it is my friend)

So I think I am over my irrational "bridget neither touched, tickled, stood within 5 feet, was bitten, scratched, or given dirty looks by a baby skunk" fear of rabies. (though i guess the next 60 days or so will tell ;p). I've also started using the shift key.

So anyway, two things happened that utilized speech that made me laugh a little, gallows humor mind you. I went to a jewelry making course this week, 5 days 10-5 pm with a lunch break. I generally showed up late and left early every day since the class wiped me out even though it was sitting around crocheting with wire. This was humbling since I was the youngest person in the class (and I believe the only one with osteoporosis, which is good for all the strong healthy women i took the class with who were at least 20+ years older than me, though not so great for me!)

1) I made this gorgeous necklace out of fine silver and these really stunning, rare freshwater pearls I had been holding on to. These suckers are lovely and deserved something far nicer than craft wire. One of my classmates suggested making a mate for it, but one where I would patina the metal (making it darker). I thought that would be a great idea, since it would add a lovely contrast. Turns out to oxidize the metal requires strong concentrations of chemicals, so I bowed out of that, explaining I have numerous sensitivities, I'd rather not put myself at risk and inconvenience the whole class if I went into shock, which lead to a discussion of my mast cell disease. The instructor, trying to be helpful said, "Well, don't feel bad about not being able to utilize said process, it makes normal people sick too." I shrugged my shoulders, said it wasn't a big deal, if I really wanted to do it, I had a friend with a bench I could give the piece to to have her do it...a few minutes later the instructor came up and apologized to me about her choice of wording...While I hadn't even noticed it, she'd called me abnormal. I know she was trying to make me feel better when she had said it, but I think apologizing for her choice of words made me feel more self conscious than being inadvertently referred to as abnormal.

2) I went on a huge rabies rampage today and called all my doctors, cdc, mass wildlife etc to have it reconfirmed to me that it would be nigh impossible that i would've gotten rabies from standing by while my husband was neither bitten, scratched or spit on by said skunk. I was talking about the immunization with my PCP, a wonderful woman who knows about masto, and she said something about how the rabies vaccine was not applicable for me, and anyway it wasn't something to be played around with because it was very hard for even normal people to tolerate. Again, I thought nothing of it since we were talking about immunizations and immunology and I have proven to not be normal in those fields, but again she apologized profusely.
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So it's interesting. I don't run around screaming HEY YO I AM SICK PLZ PITY ME (in fact I got scolded in an adorably mothering type way when one of my classmates saw my epi pens sticking out of my bag and told me I had to alert the class I may need them) and I don't expect to be treated different or coddled all the time, but in two instances where I ostensibly could've been really insulted i wasn't phased. That kinda makes me feel good. Not that I've necessarily given up my identity to it, but I don't -care- about it. I don't -care- if I end up in the annoying category once in a while. It's a fact of life like gravity and that's it. My non-reaction to it is what surprised me the most.

Sunday, July 27, 2008

Rabies Risk?

I am sure this is more paranoia due to the fact that Mastocytosis causes problems with everything but I feel the need to post this here to see if anyone has any feedback:


Today Ethan and I were in the parking lots of a Michaels and we encountered a baby skunk. It was so tiny, maybe the size of Ethan's hand (not including the tail) and was stumbling around. It seemed lost, possibly injured, and very needy (it kept approaching the two of us as we stood in the rain trying to call various animal rescues/police departments to no avail). It was obviously a baby/young adolescent and should've still been with its mother, but it was alone.

The storm was getting worse, and we couldn't stand outside in the lightning storm waiting for the cops to possibly arrive to deal with the skunk. I ran into the store and they gave me a big box, which I handed off to Ethan. I didn't want to get too close to the skunk in case it sprayed (i have no idea if getting sprayed or being near a spray would send me into shock). I went back into the store, and ethan captured the skunk in the box (at no time did he touch it, at no time did it make any attempt to bite or scratch him) and carried it over to a wooded area far away from the parking lot. No physical contact was ever made with the skunk.

When we got home I developed a blinding headache (most likely the weather or my first ocular migraine) and decided to do some research on skunks. Of course it turns out that many of the behaviors our little friend was exhibiting could've been rabies (out in daylight, docile, unafraid of humans, weak) though they also may have been the result of being separating from its mother and not receiving adequate nutrition.

So, my chemistry/veterinary inclined friends, what, if any, risk does ethan have from interacting with the skunk as loosely as he did? again no physical contact was ever made between them, but i don't know if there is possible transmission through say, flea bites or something. and in kind, what is the possibly transmission rate (if any) to me or to him?