Living with Mastocytosis

woah

2012-01-16T08:33:00.000-08:00

so my blog made it onto google alerts last night. that was sort of unexpected. hello new people!

there is not too much going on here. i'm sort of in this annoying limbo of waiting for my sinus surgery to happen. it was supposed to be 1/11 but a lot of things happened that sort of waylaid it, mostly my body continuing to be a saboteur. so now it's scheduled for the end of february since there is a lot of coordination going into this.

when i first got diagnosed, i was hugely spoiled by the fact that i lived in boston and had immediate access to a host of doctors who all but specialized in mast cell stuff. out here in LA it's a totally different story. where my last masto doctor had around a hundred or more patients, my current one has 8.

but UCLA is really stepping up to the challenge. they've briefed all the nurses and will rebrief the, the head of critical care anesthesia is going to be my anesthesiologist, they're admitting me post-op for observation, they've spoken to pretty much every masto doctor we've thrown at them and read all the literature that's available on the TMS site. so really i have to just give up that control and know that they know what they're doing and i have to trust. that's scary.

one thing i will say, is that from now on i'm carrying purell in my bag forever. i was in great shape leading up to October, no problems, i'd actually had a sinus xray done in May (i'd been having headaches) and then i went home to boston for a wedding. now, flying itself isn't good for your sinuses, all the pressure changes and recycled air, but that isn't what did me in. i went to a wedding and over the course of the night hugged and chatted with 4 people, all of whom after giving me a big long awesome welcoming hug said something along the lines of, "oh my god, i am so sick, i have had the worst sinus infection going on". i try not to make a huge deal out of my masto in social situations. i don't diminish it, when i invite people over i ask they not wear perfume, when i go to dinner parties or wedding i eat beforehand or bring my own food, but i've never really pondered the implications of biological warfare going on between myself and my friends when it comes to germs. I think the combination of 4 flights in quick succession plus 4 germ encrusted hugs just pushed me over the line because the next time i went to the doctor, and had an xray done, ALL of my frontal sinuses were fused shut. the only ones that are normal are the maxillary ones. so from now on i'm going to need to be pushier about asking people if they are sick before hugging them. and carrying purell everywhere.

it stinks because we threw everything possible at this infection too. antibiotics, steroids, nasal steroids, neti pots, steam, nasalcrom, afrin, singulair but it is not budging. so in a couple weeks i'll have my sinuses excavated and can hopefully get back to enjoying life vs feeling like a miserable blob.

2012-01-15T01:01:00.000-08:00

it has been a long time since i had posted, sheesh. i think when posts are low traffic that's generally a good thing, as there's nothing interesting to report. for a good stretch of times things were pretty decent, though i've been waylaid by a serious sinus infection since the beginning of october. pretty much all my sinuses are blocked. i was supposed to have surgery on the 11th to open them up, but honestly my life has been SO FUCKING FULL of insanity that i just broke down emotionally and physically. since the surgery isn't super emergency stuff, we're doing it on 2/27 now. the combination of angry mast cells and congestion made it seem too risky. suffice it to say i'm still not psyched about surgery but hopefully there will be more clarity in other aspects of my life by then, so things will seem more settled.

a close family member has been going through the diagnostic process to determine if they have multiple myeloma or some other blood cancer. that has been by far the hardest thing i've had to deal with, pretty much ever. it's so much hurry up and wait stuff that it becomes unbearable. i also haven't really spoken about it with anyone because while i tend to be a fairly open book, i also would like to respect my family since they're more stoic. suffice it to say, right now it sucks. a bunch of blood and urine work was done, and from there i guess it will be determined when said family member needs to get a bmb, which should be this week. it's been incredibly traumatic and i just want answers. which just makes me feel so ineffectual and small because even with answers it isn't like -i- can do anything.

then there was this massive facebook drama. i kind of hate facebook because people can use it to present themselves in whatever manner they choose. since i don't particularly dig my masto diagnosis and don't use it as an avenue to make friends with people, i think in some ways that makes me less popular in the masto online world. (obviously my attitude also makes me less popular since i admittedly can come across as a bitch at times, though that is something i've been working on) but things went ten thousand shades of fucked up over the past 3 weeks. like, there is honestly no way to really be able to elaborate on the nonsense that has gone on without either making up random pseudonyms of people or just flat out calling them on their shit (or my interpretation of it which is admittedly biased and as far as impressions go, not fully formed since i only know fragments of what has been going on)

but this is why i hate facebook, or i guess high school. during the drama of the past 3 weeks, one thing came up that's essentially been verified by two people that, to me, is bullshit. we all have our cliques, sometimes it feels great to scream into a wind tunnel without opposition, however other times i think it can turn into a breeding ground where negative behaviors fester and explode and this is one of those cases. i have no doubt this one splinter group started with good intentions, keep things small, keep things intimate, i get that, i get all of it. it's honestly not something that appeals to me, only because i already know too many people between djing, hooping, jewelry making, gaming, and having lived in a bunch of cities, and i've been blessed with incredibly supportive non masto friends and family. so i admittedly don't rely on other masto patients for much emotional support or even much in the ways of socialization. it's nothing against anyone, it's just that in many cases, aside from this stupid disease we have nothing in common and sometimes those things are huge (religion, politics, etc)

so apparently there is this one clique, and so i've been told, it has a tendency to shit talk other masto patients behind their backs. this is so not awesome on so many levels. first off, if you create a closed community where pack mentality ends up taking over, you're all gonna just discount people permanently and possibly without merit. it's way easy to hate on someone if your 13 other friends do it too, even if half don't even remember why they're doing it in the first place. discounting and discrediting people is so easy when you have a dynamic like that. then as long as you've got this hatetastic feedback loop going, you're never going to look at your targets as people, just sources for amusement. they stop being people and start being caricatures. plus, as long as you've got a group of people backing up your perspective, it's never gonna change.

here's the thing, not everyone needs to be friends. not everyone needs to like each other. to assume either of those things is possible is being blindly optimistic and veering into the territory of being incredibly naive. but when you create a social structure that legitimizes dislike, you're also never going to be able to let go of those negative feelings. really, i can't even see where the benefit in that is. let's say, dear reader, i walked up to you and slapped you for no good reason. obviously it would be fantastic that you had friends you could turn to who would have your back in that instance. but if a year later you're -still- complaining about it, having never confronted me, it grows and grows, turning it into this massive cancer that resides in the back of your head, nothing changing for the better. for me, i don't like to write people off, sometimes to my detriment, but i also think that everyone changes, and everyone deserves a second, third, or fourth chance. people fuck up, but if we viewed everyone based solely on their fuck ups, pretty soon we'd end up hating everyone. there's no joy in that, there's no freedom in that, you end up getting wrapped up in your feelings that should've been let go ages ago.

plus, really, bitching about people behind closed doors, to me, seems stupid. whenever i've had a problem with someone, i'd rather have it out with them right then and there. it's so much more effective than spending time stewing and being consumed with anger or pettiness. i will always have a lot more respect for someone who calls me on my shit directly, even if i don't agree with them, vs someone who bitches about me (or anyone) privately for long stretches of time. i mean, the world is full of unpleasantness, and that includes not getting along with people, but i guess i'd also like to think we could all at least try, especially when it comes to masto patients, as there are so few of us that really the last thing we need is to fracture the small groups we have.

hello hello

2010-07-13T23:33:00.001-07:00

not much to update on the health front. my tryptase went up some, but by like, 10pts which is essentially negligible. I've flown 3x since my last post, the most recent was to move cross country from Boston to Santa Monica.

This is going to be an intense experience. In Boston I was spoiled by having some of the best healthcare ever available to me thanks to B&W's masto center, but here I'm on my own. There is a masto doctor in Long Beach, but I don't know much about him (he's a pediatrician who sees adult masto patients) and that's all good and well (though about an hour away)

I will go see some of my masto doctors in Boston in Sept as I am going back there for a wedding and my doctors worked to fit me into their schedules. Considering I'm relatively stable and only saw them once every few months, I think I could even keep this schedule up if need be.

Lots of acclimating going on. right now I don't have the majority of my stuff (we hired movers so it's in transit) and am staying in a furnished apartment.

I've noticed some things...I don't care about my health lately, or more specifically, I'm not hyper focused on it. I've been eating new foods (i've been adhering religiously to the low histamine diet, and even then i've been really scared to try new foods, but i'm slowly branching out) and trying new stuff when my husband isn't around. i went for a long walk alone to the beach yesterday. i haven't gotten a pcp yet.

i mean i know i need to do that last one, and i'll work on it this week, but the fact that i'm not freaking out...that seems good. it seems like acclimation.

one thing i'm curious about exploring out here is medical marijuana. i have had an increase of bone pain (i finally had a nuclear imaging test done in...may? which showed lesions in my spine and hip) and i sleep poorly due to sky high pgd2 levels and i'm guessing that weed could help with those things. i don't even know how one goes about it but i think it might be worth pursuing since I didn't fare too well on aspirin (i am going to try it again) and i don't want to fry my liver with tylenol.

otherwise, not too much else to report i guess. i have a swollen lymph node on my neck i might need to have biopsied, though chances are it's irritated because i've been getting all creative with my hair lately and i have some scalp irritation. of course i was all OMG LYMPHOMA but my doctors all told me to calm down (this was pre-move obviously)

i'm so bad at keeping this up

2010-04-18T17:57:00.000-07:00

I've been curious/concerned about facebook lately and its influence on the masto community. recently this sort of meme-thing went around about how Christopher Reeve had mastocytosis and it might have played a role in his death (i guess the story goes he had an anaphylactic reaction to antibiotics) Now, I don't know the specifics of his death, I wasn't there, I don't know the Reeve family (though I do support their foundation, as even though they don't support masto research, stem cell stuff may help us in the future) so I can't comment on whether or not there is any validity behind the claim that mastocytosis killed Christopher Reeve. I mean it's possible. It's also known that he had a severe spinal injury that most people don't survive. I know when I get a cold or cut or bruise myself badly my mast cells flare up into full effect. I can't even imagine the impact of a spinal injury would do, of what being a quadriplegic would do to the mast cells.

What I -do- know, without reservation, is that even with mastocytosis, Christopher Reeve was superman. He was a student at Cornell, a stage and film actor, he was an athlete, an equestrian, he was asked to run for congress....he had a ridiculously full life -and- he had mastocytosis. He did all that in spite of the disease we have.

Don't let the circumstances of his death (which are cloudy) overshadow the fact that he achieved a lot. he lived. fully.

What upsets me is that i posted a very abbreviated version of this on someone's page on facebook (who constantly posts about masto in the most negative and ill informed light, inferring we're going to die, that we will need organ transplants) and they "unfriended" me and then wrote some passive aggressive shit about me.

Now, I'm all for forming a community for people who deal with this disease. I think it's crucial, I think we need each other. But we also need to not throw daily pity parties and spread around dangerous misinformation too...and I see a lot of that happening on FB, way moreso than I do on the various mailing lists that I've written about in the past. It's interesting because both the mailing lists and FB provide us with community, but they seem to come from completely different angles. I almost get -scared- when I feel like I'm "teaching" someone who has masto about their disease, especially if they're being very vocal about stuff that doesn't make sense.

None of this makes sense. We'd need to be MDs or PhDs for this to all make sense, and I get that. But I guess I just am wondering if I feel the need to be educated more important than the need for masto-friends...But don't take this to mean that I don't want masto friends, because I totally do. I want people that I can relate to, who won't look at me with pity or fear if I get flushy or rashed up.

meh.

In other news, I might have to step on a plane soon for the first time since my diagnosis. It's still very up in the air at the moment, but it's quite nerve wracking too.

not much to say other than

2010-04-15T10:23:00.001-07:00

if you haven't heard about it please take this important survey

http://www.tmsforacure.org/survey.shtml

see meeeee

2010-03-11T10:12:00.001-08:00

huh

2009-10-27T23:12:00.000-07:00

i have not had a lot to say lately. my health went waaaaay down south after the conference, though i think that was more related to my trying to taper off one of my meds than anything. apparently not a good idea. nothing feels worse than having a hardcore relapse, especially when you've been feeling moderately ok.

otherwise things are ok. i cut my hair short and dyed it purple and black, i decided i needed a change and i love it.

also for halloween this year i am going to be a skeleton, specifically one of those mexican day of the dead skeletons. it's a pretty neat costume that involves coating myself in black and white greasepaint and crystals. i like halloween a lot, i like costumes a lot in general. i like the opportunity to step outside of who i am, even for a short time i guess.

the conference itself was good. i was surprised at how comforting it was meeting so many other people dealing with masto...and i was duly impressed with how many of them seem committed to living their lives to the fullest...i felt sort of inadequate in comparison. i gave a presentation which was well received (though to be fair i spoke after a hematologist who told us we all had cancer - check the TMS page for the board's rebuttal on that one) and all in all i had a good time. i learned some, but i sat out the panel discussions that i thought would either stress me out too much (osteoporosis) or ones that didn't apply (mcad/pediatric stuff)

people eat a lot more food than i do. which is not to say i'm skinny, cause i'm not. but my diet is really really limited, and a lot of that has more to do with my sense of fear than anything. food and anxiety are my top triggers. so one of my goals is to try to expand upon my diet somewhat.

otherwise i am not too sure what to write about. i did a urine histamine for dr castells last week that came back as -12- so i'm guessing there was some sort of error there since last time i did the test it was 600. i'm still waiting on my tryptase and all of that good stuff.

for those visiting from the mastocytosis conference

2009-10-04T17:00:00.000-07:00

The following is a copy of the relaxation script i use for procedures where anxiety might be an issue or where i don't want to use painkillers. i mentioned this during my little presentation
------------------

Now what I want you to do is show you how you can use your imagination
to enter a state of focused attention and physical relaxation. If you
hear sounds or noises around you, just use these to deepen your
experience.

On one, I want you to do one thing – look up.

On two, do two things – slowly close your eyes and take a deep breath.

On three, do three things – breath out, relax your eyes, and let your
body float.

OK let's begin. One... two... three.

That's good, just imagine your whole body floating, floating right
now, each breath deeper and easier. Right now I want you to imagine
that you are floating somewhere safe and comfortable, in a bath, a
lake, a hot tub, or just floating in this space, each breath deeper
and easier. Notice how with each breath in, you let in a little more
comfort, and with each breath out, you let a little more tension out
of your body... as you let your whole body float, safe and
comfortable, each breath deeper and easier. Continue breathing
deeply, remaining in this state of calm focused concentration. Now
this is your pleasant place to be—safe and sound. So just spend your
time being wherever you would like to be.

Now, if there is any tension or discomfort in your body, you can
notice it, but then transform that sensation. If you feel some
discomfort, you might find it helpful to make that part of your body
feel warmer, as if you were in a bath. This warmth becomes a
protective filter between you and any distracting sensations.

If you have any discomfort or tension right now, imagine that you are
applying a hot pack on it and see what it feels like. Develop the
sense of warmth to filter any discomfort out of the distraction.

With each breath, deeper and easier, your body is floating still,
feeling more and more comfortable with each breath.

OK picture in your mind a screen like a movie screen, TV screen, or a
piece of clear blue sky. First picture a pleasant scene on it. Now
picture a large piece of blue screen divided in half. All right, now
on the left half, picture what you are distracted by on the screen.
Now on the right half, picture what you will do about it, or what you
would recommend someone else to do about it. Keep your body floating
and if you are distracted notice the distraction, but your body and
mind can still float comfortably. Good, you know that whatever
happens there is always something you can do But for now just
concentrate on keeping your body floating and feeling comfortable,
safe and sound.

When finished say – OK, it's time now to come back to the outside
world. We are going to leave this state of trance by counting
backwards from three to one. On three get ready, on two with your
eyes closed roll up your eyes, and on one let your eyes open and take
a deep breath and let it out. That will be the end of your trance
experience, but when you come out of it you will still have the
feeling of comfort that you felt during it. Ready, three – get ready;
two – with your eyes closed roll your eyes up; one – let your eyes
open and take a deep breath.

on support groups

2009-09-15T12:40:00.000-07:00

i posted this to one of the masto lists in response to someone asking essentially, "well if i get diagnosed, that doesn't really make things better does it?"

and yeah, honestly, you don't get diagnosed with something like this and then get cured. it's not even the same as other chronic illnesses where there are tried and true treatments that work for the majority of the cohort. since we're all so different in our triggers, it's a long process of trial and error to figure out what makes us feel fine vs. what sets us off. There are no easy answers.

but then, in life, when are there?

Sometimes I think that these lists are a double edged sword. On the one hand we have this strong and vibrant community of people we can interact with who know what we're going through. They get the weird idiosyncrasies of our lives. They understand how difficult it can be to go out to a restaurant or the ick we may feel when someone walks by wearing too much perfume. The downside is that we mostly seem to post to the lists when things are going bad. I know that when I'm feeling super well, I'm not asking questions, I may not even be home using my computer, so chances of my posting, "WHOOOO 3 months and counting without shocking" are pretty low.

When I first got sick, I was so sick I ended up with gastritis and lost like, 40 lbs due to malnutrition. I could not even make it to work without flushing and sweating and/or vomiting or having diarrhea. I started throwing up blood because the lining of my stomach and esophagus were so shot. It was absolutely terrible, and my husband had to start working from home because I was too scared to be left alone because I was essentially shocking every day and in the ER at least 1x a week. to put it bluntly, it fucking sucked and i saw no decent end in sight. i never thought about offing myself or anything even remotely that dark, but i remember feeling like i was about to turn 30 and my life had completely and utterly fallen apart. i was angry and really really angry because everything i'd worked towards had just collapsed and all i had to show for it was a torso covered in hives and some epi pens.

I started on gastrocrom and within a few months things really started to turn around, especially as I added more antihistamines and the like to my regimen. Now I work on jewelry, go visit friends for overnight visits in other states, exercise, ethan's back at working at the office...life is not 100% like it was before I got sick, but I've adapted as best that I can. Up until a couple of weeks ago I hadn't shocked in months...and when I did shock it wasn't really that bad...I was able to get it under control with meds, but more importantly, I -knew- what was going on. It was annoying it was happening again, but it didn't feel like the end of the world.

So yeah. I can only speak for myself, but I know that I don't post about my good days because I want them to be unremarkable...they should be in the majority and not warrant mention, if that makes sense. Yes my life is more restricted than it was when I was younger, and yeah that's kind of lame, but it is what it is, and all I can do is learn the best adaptive behaviors possible to move forward and be as fulfilled and happy as possible.

So that is the problem with mailing lists...we see the more negative sides of the illness since we're seeking support regarding living with an illness, not just simply living...so of course people write about the less fantastic shades of life. they're still there though

H1N1

2009-09-07T01:36:00.001-07:00

So what are you planning in terms of this fall's flu season since it's apparently going to be harsh? Getting the shot? Not getting the shot? Fill me in!

couple things

2009-09-07T01:05:00.000-07:00

This year I'm speaking at the annual TMS Conference (come see me be witty and mock pics of me getting my bmb!), and in addition I'm going to be taking part in some walk-a-thon fundraiser thing too. i feel like this is almost more important in light of the fact that a young woman recently passed away from mast cell leukemia (the worst variant of this illness) and it's really thrown me for a loop. i've only been "sick" for a couple of years, but aside from the 83 year old guy I mentioned in an earlier post, or Christopher Reeves (who had huge comorbid issues to contend with) this is the first time i've heard of someone dying from this. She was close to my age and it just frightens me. I think I'm almost more frightened since for whatever reason I can't determine I've been having shocky episodes lately. The timing was bad I guess (not that I really have any right to complain in this situation, as I only have ISM)

here be the link if you feel like donating:

http://www.tmsforacure.org/annualconferences/index.shtml#walks

it is, as always, appreciated. I feel sort of stupid posting this here, but in case any of you are not involved with the TMS or hadn't heard of the fundraiser, it's worth a shot at least.

-----------------
someone posted some information on masto and the diagnostic process, so i figured i'd share mine in case i hadn't.

long story short i've never been healthy. i was born way premature, jaundice, incubator, the whole 9. When i was little i'd get pneumonia at the drop of a hat. got mono twice (yet never chickenpox, or any variant of the varicella virus), allergies, asthma, whatever. i've always had problems with fatigue and bone pain...though my doctors didn't take me seriously because i -did- stuff. instead of bawling on the couch i worked full time, went to school at night, worked out...i pushed myself so hard to get through the fog that was in my head that it seemed like i was healthy.

in 2007 i started having severe abdominal pain. a CT scan showed some problems with my intestines (yay) but also some sort of "thing" in my spine. I think it was a hemangianoma. so i went to have an MRI of it. the mri was aborted after a few minutes due to my back getting hot (my back is tattooed). waiting for my partner to pay for the parking at the hospital, i was nearly dropped by this overwhelming sensation of bad. it felt like all the moisture had been sucked from my eyes and skin, and this disgusting metallic taste filled my mouth. my face went numb, my heartrate went through the roof and i nearly collapsed getting me to the ER. no one knew what was wrong with me at the time so it was chalked up to panic attacks. 3 days later i was vomiting blood, both the black gritty stuff from your stomach and the bright red stuff from your throat. still panic attacks. a month later i'd lost about 40lbs and was sickly thin, still panic attacks. modern medicine someone missed that it was anaphylaxis. good job Beth Israel, that's why I tell people to avoid you like the plague now.

my stomach started mottling and i went to see a dermatologist who noticed spots all over my back and arms. i'd had one biopsied a few years prior and the results were "high in histamine" though no follow up was prescribed. the new dermatologist nearly went through the roof when he saw this and apologized for his colleagues negligence. from there i had another biopsy, extensive bloodwork, and a 24 hour urine histamine. the biopsy showed high histamines, the blood showed high tryptase, and the urine showed high histamine. from there i was referred to a masto specialist who redid the tests and eventually everything was reconfirmed by a bone marrow biopsy.

so that's it in a nutshell.
-----

i've been really pissed off the past week. last sunday i shocked in a car (which i wrote about) and assumed it was an isolated incident. then this past friday, reacted again in a car (different car, same model. it's possible i've developed a sensitivity to german cars i suppose. ok not really). there were no similarities in my diet or behavior on either day as far as i can tell. i don't know if it was aftershocks, my kidney being a jerk again, a virus, or something else. all i know is that i'm not too keen to have had two episodes so close to one and other. i sent an email to two of my masto doctors asking for advice so we'll see if i have to up my meds. good times. today i spent about an hour in the courtyard of my building hooping, as i'm trying really hard not to let this get to me. give me a week shock free and i'll be set. aside from hating the shocks/episodes/whatever, i hate how the meds make me feel. i've been way hesitant to use epi (my experience thusfar has been using an epi inhaler, never the pens) but i hate how atarax makes me feel. really stupid and slow.

ANYWAY hopefully my welcoming september in by being all reactive is over with and now i can go back to things being ok. i'm trying way hard to be optimistic, especially as i have a ton of stuff to get done and don't feel like letting this get in the way if i can help it. because really, i get so annoyed when people get all overwrought about this sort of thing. i understand that illness = suffering at times, but i still firmly believe that our perspective plays a huge part in how we deal.

2009-08-31T21:27:00.001-07:00

i didn't let it get me down. today i went hooping with the kids at MIT and went shopping. Not the most adventurous of days, but I easily could've hid with my head under a pillow all day too.

urgh

2009-08-31T12:41:00.000-07:00

Well I guess the positive streak had to come to an end at some point.

Yesterday I was driving back up from Providence with a friend when I started feeling a little off in the car. My eyes felt incredibly dry, like all the moisture had been sapped from them, as did my skin. Then I got a sort burst of heat from my chest, that oh so awesome feeling of flushing..which of course was followed by the panicky feeling, tachycardia, the intense stomach cramping, and the feeling like i might suddenly pass out. I quickly gulped down some gastrocrom which seemed to help settle things somewhat, or at least made it that the flushing and waves of metallic tastes in my mouth were pretty minimal compared to shocking episodes in the past.

This was all made about 10,000 times more awesome by the fact that my friend had decided to chart the most circuitous path through Boston to get to my apartment possible. I swear we hit every single red light in existence between when I noticed symptoms popping up to when I finally got to my apartment. It sucked, but once I got into my apartment, I took some h1 and h2 blockers and felt better. The bone aches kicked in later (i don't know about the rest of you but my bones ache after an attack) but no more symptoms. What sucked more is that I have -no- idea at all what caused this attack. None. I've done things that would be considered risky in the past month, but nothing that I can recall yesterday.

I was supposed to have some dental work done today, but I bailed on it, since I didn't feel like having to subject myself to something that might trigger more attacks and I want to give my mast cells some more time to settle down.

I'm not going to let this get me down though. I had a good long run without having any massive symptomatic episodes, and this is just a blip, a bump in the proverbial road. It's just annoying to get smacked down so majorly and so seemingly out of nowhere.

on death

2009-08-25T11:05:00.000-07:00

I always feel like I want to preface posts that sort of originated on one of the masto lists with the apology that I'm not trying to pick on people or their perspective, so much as I am taking this over here so as to not specifically engage them in the conversation.

More than a few people with masto have set up google alerts so that they get an email whenever mastocytosis makes the news.

This "story" (actually an obituary) popped up in the past week:
http://www.mysanantonio.com/obituaries/52466687.html

Long story short, it's the obituary of a gentleman who died at the age of 83 due to mastocytosis. It's an obituary, it's written for or by the family to announce his death. This lead to discussion on one of the masto lists I'm on about how frustrating it is that the "article" didn't get more in depth regarding how the mastocytosis killed him...sort of ignoring the point that it was an obituary and not an investigative report on mastocytosis. Now, we don't know how this gentleman died, and we never will. All we do know from reading this "article" is that he lived a full and varied life and died 9 years over the average life expectancy for males in America while having mastocytosis. We don't know how masto killed him, we don't know how long he'd been diagnosed for, but to me, I don't want to know. He lived a long life, longer than average, and I guess to me that is comforting. If this were the obituary of a 24 year old, I'd be more concerned and probably want more answers. but in the end, the point of an obituary is to dwell on someone's life, not their death.

I understand fully that there is a great likelihood that this disease may kill me, just as much as I understand that I may die of heart disease (it runs in my family) or cancer (as I am a smoker - though I'm working on quitting, I swear) or I may die from being hit by a car or something else. Point being, I'm going to die at some point. We all are. The most important thing that we can do as people (masto patients or not) is to learn the adaptive behaviors necessary to live as long (and fruitfully) as possible.

Case in point, I really like tattoos. There's no real information out there on whether or not it is safe for masto patients to get tattoos. The one I have, I got years before my diagnosis. As much as I'd love to add to my collection of body art, I am unsure of the risk. If the risk is death, obviously the risks outweigh the benefits 100fold. So I will not get any tattoos until that risk has been assessed (and not by me personally, but by physicians, hopefully at the TMS conference).

I also know, from anecdotal evidence and empirical evidence that certain things carry a great risk for masto patients (sulfa drugs, opiates, etc) so I avoid them. I don't need to read every story of every person who died to be stalwart in my avoidance of these drugs. When I have to schedule a medical test I run it by either the list or my doctors to see if anyone has experience. If I'm going to attempt to do something new (using a vibration plate for exercise, going hiking where I may get bitten by mosquitoes) I ask people if they have any experience.

I don't focus on the mortality stuff as much for a few reasons

1) This disease, in my experience, is incredibly subjective. I can do things some people cannot do, others can do things that I cannot do.

2) Chances are we may not know the full story. In the case of the man in the obituary, how long did he have masto? Did he know he had it when he died? Was he being treated? Was he being treated properly? Unless we call his grieving family, there is no way to know this stuff. I know one story of a masto patient who almost died during surgery because they suffered cardiac arrest due to the anesthesia. Scary right? It's scary until I include this piece of information: they were diagnosed -post- surgery -due- to their near fatal reaction to the anesthesia. They weren't following any surgical protocol, their anesthesiologist did not know they had a high risk patient on the table...all of these facts came to light after the procedure.

As a mastocytosis patient (and one who strives to be educated on their disease) I carry all my protocols with me (being Dr. Castell's emergency protocol and the TMS's anesthesia protocol) , carry epi pens, instruct everyone around me on how to administer epi, wear a medical alert bracelet, don't wear perfume, don't drink, don't typically eat out (food seems to be my biggest trigger) carry a pillbox with prednisone, atarax, benadryl, singular, zantac and ketotifen in it (it's a sexy pillbox) and just sort of do the best I can. I follow the low histamine diet because it works for me. I slowly add foods to my diet to see if I do or do not react to them.

I feel like it's a double edged sword. On one hand, knowledge is power. As a cohort of people with an orphan disease, much of the information we gather is going to be gleaned from our peers. There's not a lot of money going into research, there aren't alot of interested researchers. I totally get that. But I also feel like there is only so much information I want to fill my head with, especially when it becomes redundant (opiates are dangerous, anesthesia is dangerous) and incredibly depressing. As I said in my previous post, I don't want this disease, knowledge of this disease, to comprise most of my time. I want to learn to live with it, in spite of it.

I am not scared of dying any more than anyone else is. It's not a pleasant thought. But I feel like there is only so much I'm going to learn when researching the how/why of masto patient mortality.

The following comes from the TMS website, to me the bolded part is the most important part. The rest are just guidelines which are optimal to be followed. Obviously I can't be next to a hospital at all times, but I just take solace in the idea that epi buys me time I guess. Cause really, to me, what is the point of being alive if I'm miserable and constrained?

There is great variation from person to person in what is a trigger, and even within the same person. The triggers may change day-to-day - that is, heat may set off an attack on one day, but not on other days. The above list is not complete, but is meant to show the wide range of triggers that affect mast cells.

Some people with the indolent form of Mastocytosis, and/or people with Mast Cell Activation Disorder or Syndrome, have been told by some physicians that they can expect a nearly normal life expectancy, as long as they keep themselves as stable as possible by avoiding triggers and taking medications as prescribed. However, since it is not clear what is causing mast cell activation in patients with MCAD, this may not apply. Mast cell diseases are extremely unpredictable, and some people can very quickly develop acute symptoms that may require immediate medical attention. That is why it is advisable to stay within range of a medical facility, and to carry a written protocol from your mast cell disease specialist for emergency care.

almost 2.5 years

2009-08-23T22:13:00.000-07:00

I've been "sick" for almost 2 and a half years now. At least that's when I got my diagnosis.

The kidney issue really threw me for a loop, rather hard. I was in tremendous pain and was tremendously unstable. It was awful. I had the lithotripsy and things started to slooooowly turn around.

Come April I came to a rather abrupt conclusion. This was aided by the passing of a 5mm kidney stone, without any painkillers. To say it was painful would be an understatement. However I also realized that my options were to either a) go to the hospital to see what would happen. Most likely they'd want to give me painkillers which I wouldn't be able to tolerate, plus I'd be in pain in the hospital, which would be miserable. Or I could stay home and try to get through it while meditating and making sure I was still able to pass urine. I opted for the latter, breathing and sweating my way through around 12 hours of the most intense pain I'd ever had.

In the morning I passed the stone.

I felt so powerful afterwards and I realized that while the masto had kept me from something as comforting as morphine to dull the incredible pain of the stone, it also kept me from even seeking out the additional comfort. Why couldn't I view my masto the same way? Why does this disease have to be this huge hinderance for me?

Ever since then I've been throwing myself into activities. I've been exercising daily, working on jewelry like mad, signed up for a class at MassArt for the fall, started working with hoop dancing...it's all so beautiful and wonderful.

It's like the past two years were under some sort of shroud. I was quiet, landlocked, miserable, kept to myself, kept quiet...now I just want to expose my heart and stretch and move and be loud and be around people and it feels glorious.

I'm obviously still sticking to my meds and to the low histamine diet...but I feel like this disease became an addiction almost. Everything was so colored by it, so darkened by it...and now I'm starting to be free again.

oh hey

2009-06-19T16:41:00.000-07:00

so i am definitely going to be giving a brief presentation at this year's TMS conference in New Jersey. I will be speaking along side a doctor on how to survive a bone marrow biopsy. Reading the speaker list is sort of intimidating as it's all doctors and then me.

links

2009-06-06T16:19:00.000-07:00

Not much is going on in my life right now. The lithotripsy wasn't as successful as I'd wanted it to be, as there is still stone in my kidney. HOWEVER it is no longer blocking my kidney, so now I guess it's a waiting game.

Boston is scoring big time however, and Dr. Cem Akin is coming up here to practice at Brigham and Womens with Dr. Castells. This is huge, and while I totally feel for people in the mid-west who will be adversely hit by his leaving, the selfish part of me is psyched to get another mato specialist up here. While I adore Dr. Castells, I wouldn't mind getting a second opinion or backup with certain questions, especially as she is so overtaxed these days.

so here are two links of interest (well to me) one of which is negative, and one of which just sort of is.

First off, a terrible experience I had with a dietary blog that offers readers advice for a fairly steep sum. The author claims to have cured her own mastocytosis using raw foods.

http://reneoswald.com/ (i'm not hyper linking this site since i don't want her to come bitching that i am disparaging her or some nonsense, though if she does find this, whatever.) - I contacted the author after reading her blog and all of the wonders that the raw food diet provided her. Prior to my diagnosis (years prior to my diagnosis) I was a Vegan, and while in some aspects I found myself feeling fantastic, I also found myself relying too much on Soy protein and after reading up on the negative effects of Soy on the endocrine system I stopped. At the time I assumed the hormones in soy were bothering me, but in hindsight I'm guessing it may have been the fermentation. ANYWAY, point being that I'm no stranger to non-mainstream diets, really view food more as sustenance, and am willing and open to try a new diet to see if it would improve my health. Obviously unlike the author of that blog, I did not expect it to cure me of mastocytosis, but I figured it couldn't hurt. I'm all for complementary medicine/lifestyle choices if they are proven safe and effective (eg, I'll take yoga over colloid silver supplements thanks)

I sent her a short email commenting on her site, masto, and the diet, and never heard from her. A month later I somehow ended up on her newsletter and emailed her asking that if she couldn't reply to my initial email re: masto if she could take me off her mailing list. I got a friendly letter in reply briefly mentioning masto and about 3 pages of paid services she offers. I replied asking for more evidence based results re: the raw food diet and masto (since many of the foods she recommends are listed as high risk on the low histamine diet and some are outright risky for masto patients) and she replied with an email that managed to not answer any of my questions and again touted her services as a paid-for counselor/dietary consultant. Again I tried to explain that I had pretty extensive masto (and asked her what type she had had, since it's possible if she'd had UP our experience would be quite different), high bone proliferation, GI involvement, osteoporsis, etc etc etc and I got back this scathing email telling me that the TMS Board (which I am not a part of) is damaging to patients due to how resistant to change they are and how they are closed minded and only rely on allopathic solutions (which is total bullshit since the TMS board members recommend all sorts of diet/integrated medicine approaches that may work based on the individual, and if nothing try to dissuade people from more aggressive treatment that may cause more harm than good) and that it seemed like I was trying to present myself as being "sicker" than her. Which is entirely fucking stupid. What I was doing was explaining, "well i have these issues, do you think your diet is safe for me? I am conflicted about it since there is a lot of contradictory evidence out there." Now I will totally admit that I became terse since it seemed like she was more intent on selling me snake oil than answering 2 simple questions...but come on. She then replied to me with some nonsense about it not being the teacher or student's fault but she didn't think she could work with me. I replied that, yes, since she was incapable of answering a few questions I agreed with that assessment.

Another person I know actually called her and she again wouldn't answer any questions unless the caller offered her $$$ first.

Total bullshit if you ask me. While I understand that services do not come for free, I have a few issue with this

1) She claims to have suffered from masto. Therefore she knows how risky treatments/diet changes can be for patients. She should be able to answer a few basic questions about the low salycite/histamine diets before making a website designed towards garnering business for herself. Neither me or the other patient asked for free dietary advice other than, "I am concerned that this diet may not be safe for me, what was your experience like?" Instead she refused to answer any questions.

2) Honestly, the raw food diet itself is not that revolutionary. There are tons of books one can buy at their local co-op, whole foods, or through amazon. She is offering her non-tailor made interpretation of those cookbooks for a price that is higher than the cost of most of those books. It's trial and error, which again for masto patients can be dangerous, since they might go into shock as opposed to simply suffer indigestion if they eat the wrong thing. No nutritionist can make that call over the phone, RN or not. Especially if they don't have your medical records.

3) Hell, she can't even be held accountable for dispensing erroneous advice to anyone. The fact she was so hostile and so quick to lash out when asked a few introductory questions before myself (or the other masto patient i know) were comfortable committing is ridiculous considering her advice could potentially kill us.

4) If I found the dietary cure for masto, you can all bet I'd give it to you all (and everyone else) for free. Especially if it was simply regurgitated information I'd gotten from other sources.

So yeah, fuck that noise. If I'm going to try a raw diet, I'll do some research on my own, work with either an osteopath or registered nutritionist, and not someone online who makes broad claims about stuff they then refuse to back up. Obviously lesson learned, people will even prey on their "own" community to make a buck.

In other news, masto made a cameo in the New York Times.
http://www.nytimes.com/2009/06/07/magazine/07wwln-diagnosis-t.html?ref=magazine

surived!

2009-05-04T18:53:00.000-07:00

I survived the lithotripsy.

All in all it was...eh. Honestly I found the BMB to be 100% more tolerable, but I do wonder if he have different tolerances for different types of pain. In my case, having needles stuck into my hip is far more preferable than being punched in the kidney a couple hundred times.

The anesthesia part went about as well as could be expected. Due to the nature of my masto, my urologist was adamant that the head of urologic anesthesia be the doctor to work with me. While he had never had a masto patient before, he'd worked with enough at risk groups in enough risky situations that he would be the best to be there if things went wrong. The only things that went wrong were that they were supposed to have IV Benadryl and IV Zantac has prophylactic pushes, however both ended up containing an unknown preservative, so they were moved to emergency pushes, along with steroids and epi.

For the procedure itself I was given a benzo (i forget which one) and a few micrograms of Fentanyl, which is generally tolerated ok by Mast Cell patients. Thankfully it was tolerated just fine by me, and while it was a teeny dose, it totally helped as I found the procedure to be really uncomfortable.

Post op was a fucking disaster, where some idiot resident wrote my post op scripts without reading my chart as every single one of them was on my list of drugs to be avoided. That meant I got to spend an additional 4-6 hours hanging around waiting for them to find someone who could write replacement scripts and to discharge me. My post op scripts ended up being Augmentin and Flomax (they were originally Cipro-which has caused long lasting tendon problems in me and Percocet - which i am allergic to)

1 day on the Flomax and I realized that was not for me. It helps you urinate (which I obviously need to do since I need to pass whatever was in my kidney) but it also lowers your blood pressure, which is something I did not feel comfortable with. Unless totally necessary, taking drugs that can markedly lower your BP aren't the best thing in the world since they can adversely effect epinephrine, should you need to administer it. Plus it made me woozy and cranky. The Augmentin is also making me feel pretty crummy, but I only have 1 more dose to go on that.

In 2 weeks I go for xrays and figure out if I need another procedure done or what. rad.

a request

2009-04-30T20:13:00.001-07:00

one of my doctors told me that this exercise can be comforting for patients undergoing procedures without analgesics, so i figure what the hell. since my procedure doesn't require painkillers (though most patients do opt for them) we're going to try for no painkillers and light sedation/meditation to see how i do.

they told me that i should tell people to send me good thoughts tomorrow, especially around 7:45am EST, since that is when I will be going in for surgery. apparently the simple idea of people caring about you, or the fact that you are thinking of them caring about you, can provide a great deal of comfort and fortitude. Obviously I am a little dubious, but i'm also scared as fuck so i'll take what i can get.

so yeah, 7:45amish tomorrow. me and my kidney would appreciate it.

disability.

2009-04-24T12:20:00.000-07:00

i was approved for disability. i'm really not sure how i feel about this. i am glad that the financial burden of this disease will be lessened dramatically, however i am sad that this is where things stand. of course i want to get better, and of course i have to accept the fact that this illness is permanent.

on comments

2009-04-17T15:43:00.000-07:00

Ok, I have to confess something here. I have another journal where, when someone comments I get emailed so I know it has happened. That apparently is not the case here, and as such I've been remiss in replying to comments. So please don't take it personally.

If you have any questions/comments that require immediate attention (or you just want to talk) please feel free to email me at bridget.mcgraw(at)gmail(dot)com

it has been a while

2009-04-16T15:07:00.000-07:00

Obviously i don't want to inundate this blog with all the minutiae that goes on in my life because most of it is boring and not relevant. Somehow I doubt y'all care about my videogaming skills.

Two big things have happened since my last post (well I guess three, maybe four. Okay, I hadn't really thought that sentence out at all.)

1) So the doctors were able to retest the remaining bone marrow aspirate after all, and I am apparently c-kit negative. This means that if I wanted to (or if my mastocytosis gets worse) I could potentially try an aggressive treatment like Gleevec. I am not at the point where I want to consider that though. However, I'm also a little leery about my test results. While I am proud of not backing down about the fact that the c-kit mutation wasn't originally tested, the fact remains that the test was done on a less than optimal sample. If I get to a point where I decide to go for more aggressive treatment, I would request having another biopsy done to ensure the proper sample size was taken, just to make sure that there is no mistaking the fact I'm missing the mutation (since it's rare not to have the mutation, and while we'd all like to think we are unique snowflakes, I find it difficult to believe I am a minority in an already teeny cohort).

2) If all goes well, i may be giving a little presentation at the annual TMS conference. My specialist was happy with how well I handled the bone marrow biopsy (considering how frightened I was) and voiced her concern about how many masto patients don't have them done. So she suggested that I give a little presentation on coping mechanisms and what to expect and all of that good stuff. We'll see if it happens. This will also be the first conference that I've been able to get to, being as I don't like flying. Obviously when the date nears I'll have a better idea of what is happening and I'll post more information there.

3) Kidney stuff still hasn't happened. As per my last post, there was lots of drama with anesthesiology. Apparently for whatever reason, the folks in Urology Anesthesia at MGH have never dealt with a masto patient before. Seriously. So now I've got the chief doing my anesthesia now. He called me yesterday and spent over an hour on the phone with me discussing various options for sedation and pain control. Overall it was a very positive experience (the only negative being that I am now being admitted for an overnight stay since they are anxious about the masto acting up, as it can apparently do so later on). I can't stress enough the importance of being an educated patient when it comes to dealing with a condition like this, or any orphan illness. Doctors, while our best asset, are not all versed in rare conditions so the onus lies on us to be able to educate them, or at the very least be able to provide them with resources. It's not easy, and of course it is an annoying additional responsibility, but it is well worth it. We are going to end up in situations where we need to be our own advocates, otherwise we may be presented with treatments that, while healthy for 99% of the population, can be quite dangerous for us (eg narcotic painkillers, nsaids, etc). It was very empowering speaking to this doctor who is obviously on the top of his field for such a long time, and have it be such a respectful and intelligent conversation. I'm still admittedly scared as hell about the surgery (which is on 5/1) but I feel way more confident than I did prior to the conversation.

4) I'm moving (in like, 2 days). Ok so this isn't 100% mastocytosis related, however it sort of is (for me). This is the apartment I got sick in. I remember sitting in the same spot I am now when I had one of my first big mast cell degranulation events, and not knowing if I was having a heart attack or some sort of massive, unprecedented panic attack. While it is a nice apartment, it is filled with a good deal of negative memories at this point. Not that I'm so traumatized I need to flee this space or anything so dramatic, but I felt like a change of scenery would be good. So yeah. New space, new dynamic, I'm looking forward to it.

Otherwise, that's about it. I had my disability hearing and am waiting to get the results back on that. I genuinely hope that that is a short term thing, as it's hard to feel defined by it. I know that there is more to me and this situation and this illness, however it's something I still feel sort of oddly ashamed about, which is obviously something I need to work on. The hearing itself went well. I had 8 doctors fill out paperwork explaining the systemic nature of this illness and how it would negatively impact my ability to work at the current time, and the judge and vocational expert both seemed sympathetic. So now it's a waiting game. an awkward and unpleasant one.

updates

2009-03-16T21:00:00.000-07:00

So the BMB was sort of a disaster. To make a long story short, somehow, somewhere, communication lines got twisted and i was not tested for the c-kit mutation. It doesn't matter how or why it happened. It just did. What we do know is that I have a 10% infiltration and that my mast cells are spindle shaped. So now we know without a shadow of a doubt that I have Indolent Systemic Mastocytosis. We also now have a baseline for mast cell infiltration, should it get worse. They are trying to see if they can test the remaining aspirate for the mutation, but it is unclear if that is possible. So the waiting game continues. Rad.

In other news, last Friday (the 13th!) I was supposed to have lithotripsy as I've got a kidney stone blocking my left kidney. Well, I went through the whole pre screening process at MGH for anesthesia and it still went all sorts of wrong.

this is what i wrote to a mailing list:

Soooo, tomorrow I am scheduled to have my lithotripsy. Tonight I find out that my anesthesiologist (at MGH, as only MGH and Faulker seem to have lithotripsy machines and all my doctors stressed I needed to go to MGH even though that meant scheduling 2 months out since the doctors at MGH would be far more familiar with mastocytosis than at a smaller hospital) has never seen a masto patient. She then tried to reassure me by telling me she'd read some case studies. I then asked her what treatment plan her and my mast cell specialist had come up with since when I went in for my pre-op testing the intake doctor stressed how important communication with my team of physicians would be, specifically my immunologist and my GI specialist since both of them are heavily involved in mast cell patients and surgical protocol. It is imperitive since I know of a few masto patients who ended up having their masto discovered after they flat-lined during simple surgery due to reactions to anesthesia.

Well, she didn't actually call my mast cell specialist (instead for some reason i cannot understand she contacted my endocrinologist, who while awesome, i've seen maybe 4 times), but she did read some papers (even though they've had my immunologist's contact info for like, 2 weeks). She then said if I was uncomfortable with her lack of firsthand knowledge of the disease she'd page my immunologist tomorrow (being as I have to be at MGH at 7am I have no idea what time they were planning on paging her) only my immunologist is going down to DC tomorrow for some important immunology conference. which may be an even bigger deal now that stem cells are back on the table or being looked to be put back on the table.

So I had to spend nearly an hour on the phone with the doctor explaining, again, that no I don't have rast-tested allergies but that I instead have indolent systemic mastocytosis which is not the same as having allergies save for the risk of death due to anaphylaxis. It was awesome that they called me the day before surgery to ask these questions even though I went in for a 3 hour pre-op consult nearly two weeks ago where none of this came up.

In addition to this excitement, I was told by the pre-op anesthesiologist that I would need to meet with the Chief of Anesthesia before the procedure since my case would be tricky. Only
that guy is out of state too now.

So I am so freaking out right now. Since I am about to get my period my mast cells are more active than usual and I've been flushing like mad, I got hit with the not-testing for the c-kit mutation drama fresh in my mind, and now it's like, every possible thing could go wrong for my surgery scheduled for Friday the 13th, something I was never superstitious about until right about now.

Between the pms/masto instability, the fact that my immunologist is not reachable, the fact that my anesthesiologist has never had a masto patient before, the fact I was told to have the surgery at MGH instead of a smaller hospital specifically to avoid having an anesthesiologist
unfamiliar with the disease which meant delaying surgery for almost nearly 2 months, the fact that the Cheif who I was apparently "supposed" to speak with due to the complicated nature of my case is also unreachable, has left me feeling very very very uncomfortable with the idea of having surgery tomorrow. I am about 10k times more anxious than I was about the BMB, and I honestly am wondering if, if delaying the surgery to fix the above messed up variables won't cause renal damage, if it wouldn't be worth rescheduling. Of course, I would've liked to have known all this before the night before the surgery too, so as not to have to make a snap decision first thing in the morning after i get to the hospital.....

It is so frustrating. I mean, MGH and Dana Farber are considered to be some of the best hospitals in the world and after the past two weeks they make me want to put my head through the wall.
----------------

After this, I saw my surgeon who was also unhappy with how things were handled and then decided to postpone the surgery. It honestly seemed like the anesthesiologist was more excited to have a House-like patient than actually listening to what the patient was saying. So now it looks like I am having the procedure done on the 27th now, with a dedicated anesthesiologist and all of that.

And then after that I have my disability hearing. yeehaw.

oh hi there

2009-02-27T01:06:00.000-08:00

Eep, sorry i fell off the face of the planet for a while there. I've been dealing with a kidney stone which is by far one of the more annoying things in life. aside from setting off all sorts of masto symptoms, that sucker hurts, a lot. I've also been dealing with apartment hunting, as my partner and i decided we wanted to live back in the city. we ended up with a loft in a really neat artist collective and i cannot wait to move in...but i digress.

Ok, so my last post was all "whoo bmb time around the corner" (actually it was more "ooooh noooooo") and that corner has come and gone (though the procedure happened a week later than originally intended, and as such I am still waiting for the results which I should get by tomorrow or Monday). I had my bmb performed at Dana Farber Cancer Institute in Boston. Oh such a somber place. I'm always fascinated by the direct relation between how serious the field the specialist works in seems proportionate to how nice people are in the office. At primary care they wouldn't notice if you were on fire, but when you are at one of the top cancer hospitals in the country, everyone is way nice.

the procedure itself was, honestly, a cakewalk. the worst part of it by far was my anxiety, which was at banner levels for me. anxiety is something that has been hard for me to cope with since my diagnosis, since I am afraid of things going badly in ways i am unfamiliar with. so far in every case my anxiety has just added to the situation and made it worse.

to avoid freaking out and trying to volley kick a doctor, i opted to take 1mg klonopin an hour before, and then 1mg ativan right before. i was not looped out of my mind by any stretch of the imagination, but i felt pretty warm and comfortable. it helped that my doctor was stellar and my husband was allowed to stay in the room with me.

the procedure itself was way less bells and whistles than i expected. since i went to Dana Farber wearing my yoga pants and a loose shirt they didn't have me undress, and just pulled my pants down and my shirt up. then i got a shot of a local anesthetic (not lidocaine, i forget what it was) and that burned really badly. the shot hurt since anesthetics seem to burn by nature, and because the needle was stuck really deep in there to numb everything from the surface of the bone up to the top layer of skin.

after that they went in and did the aspirate (which is the collection of liquid marrow) and then got the bone marrow sample. aside from the local which hurt really badly really briefly, nothing else was particularly painful. it felt weird, and sort of gross and alien to have my insides siphoned out, but overall it was not a super unpleasant experience. there is pressure and feelings that are completely unfamiliar, but i think that as long as your doctor knows what they are doing, you aren't freaking out, and you remember to breathe into the pain (sort of like lamaze or meditation), you'll be set. it is also pretty quick once you get in there and get prepped. the anticipation really is the worst part.

in the essence of documentation, i had my partner take pictures of the procedure. however needs freak them out, so they didn't get any good shots of me getting poked though. i decided (and the doctors agreed) that while i was completely fascinated by the procedure, it would not be in my best interest to actually watch since the gauge or length of the needles might upset me.

so here are some pictures of my bmb to show how absolutely much of a non issue the whole procedure was. i've had worse dentist experiences when it comes to pain.

pictures from the procedure

2/9/09

2009-01-14T02:30:00.001-08:00

i get my bone marrow biopsy. if anyone has any stories to share (ideally positive) i'd love to hear them. i'm scared witless to say the least.

meds help

2009-01-04T17:44:00.000-08:00

I can be reached at bridget.mcgraw@gmail.com

UGH!

Seriously, my masto has been out of control lately. I've got some sort
of viral thing going on apparently (one of my lymph nodes is swollen
plus I have some fluid in my ear) and I'm guessing/hoping that is what
is exacerbating it?

Anyway, I'm undermedicated for my masto. Unfortunately, Dr. Castells
has been out of the office for ages and therefore not around for me to
do medical trials in her office (I have one scheduled for later this
week thankfully) but I've been dealing with the tachycardia, metallic
taste and general uneasiness for a few days now. It's really terrible.
Is this normal to go through? It's really dreadful and I get nervous
that this is progressing even though my tryptase level hasn't
budged..but of course in the back of my head I get worried that it's
somehow turning into aggressive or leukemia something.

Anyway, we want to add Singulair to my meds this week and I was
wondering how everyone has fared on that. I just feel like so often I
see, "well I was on ____ for a while until it caused *insert medical
issue here*" and I think I end up feeling discouraged before I even
start something since all the anecdotal stuff I read seems negative.

As it stands right now I'm taking:

200ml Gastrocrom 4x a day
150mg Zantac 1 or 2x a day (i'm bad with remembering this one)
1mg Ketotifen 1x a day
.25mg Klonopin 1x a day
50mg Atarax either 1 or 2x a day as needed (I'm not sure what the
ongoing status of this one is going to be for me, if I am going to
take it ongoing or if I'm only going to be taking it right now since
everything is acting up)

What else is there really that helps with symptoms? What else should I
be asking about in terms of things to add to my meds?

My PCP and Psychiatrist aren't too keen on Doxepin and want to talk to
Dr. Castells about it (though she hasn't returned their calls), but
would that also make sense right now? I just want things to settle
down again. I feel like I was faring really well before that stupid
car accident in Sept. and ever since then things have kind of been
chaotic. I wish we could keep some sort of ongoing statistical
database for how many people are on _____ and how much success they've
found with it...something like that would be super helpful.

Anyway, any and all help would be MUCH appreciated.

wow, just wow

2008-12-19T19:10:00.000-08:00

I feel like I complain so much about the main masto listserv that I should seriously stop referring people there. It's become such a toxic and nasty environment, something that is painfully obvious and something no one wants to discuss. Sometimes (and no offense listreaders who may be reading this) it's like dealing with a bunch of children (and I am including myself here because I would be remiss to say that I am a flawless bastion of perfection or something)...which is awesome since I'm one of the younger people on the list.

In September, some big drama transpired and people started leaving the list in droves. It has been obvious since then too, honestly. Posting in down, seems to be frequently from new people, a lot of more frequent posters barely post...it seems like a relatively unpleasant environment at times. I honestly don't know all the background stuff that transpired, but it wasn't pretty overall and no one left the situation in a 100% good place. Instead of addressing our lord of the flies type dynamic, it all got swept under the rug and the list moved on. sort of.

A few days ago someone accidentally sent an email to the list that was meant to be private. In the email they said a few unflattering things about another list member. This is an of itself wasn't awesome, but they followed it up pretty much saying, "yeah I don't care that my post could potentially humiliate the list member I slagged on, I'm glad to have gotten it off my chest."

Now, I don't live in some fairytale planet where we all get along and are best friends and sing kumbaya next to the campfire every night. I assume that people are going to dislike other people and possibly think the worst, but to be so dismissive of the fact that something you wrote could hurt someones feelings, to me, is tacky and disrespectful. While I don't censor myself on this blog, and let the occasional swear word slip in, I make a serious effort to not swear on the list because there are a few ardent Christians who are seriously offended by that sort of language. Obviously if they read this they know that sometimes I don't use the most pristine language. This is also my little corner of blog-dom, so I'm kind of allowed to call the shots. I obviously don't view the list the same way, and when I do slip up, I apologize. Not because it's what I "should" do, but because I feel bad.

But this nonsense just seems to escalate and people seem to get more angry when it's suggested, "no really, we need to start addressing this shit because it's obviously not going away". I dunno, I'm not one to avoid an unpleasant topic or situation. I'm not saying I seek conflict out, but when it continues or seems to have long term ramifications, I don't think ignoring it is the best thing ever.

I have a few huge pet peeves, and one of them (when dealing with mailing list etiquette) is when everyone starts posting to drop a subject, why a subject sucks, why the people discussing the subject suck...and it's so fucking counter productive it makes me want to tear my hair out. If it bothers you, don't get involved. If you don't care, don't get involved. But when people are emotionally engaged in something, if you tell them they are a moron, chances are it's going to escalate things. You don't like a situation, you think you are better or unaffected by a situation? IGNORE IT. Don't waste the time dismissing people who feel differently.

I just am left feeling like I can't trust the list. Whenever there is some high drama I inevitably get between 5-10 private emails detailing why some person or another is a (insert reason why they might be lame) person and should be avoided. I don't like it because it is starting to feel like we may have teams in the background with these invisible lines drawn out in the sand...sort of "either you're with us or against us" type mentality going on. I don't want to get involved with people's drama off the list. If I have something to say to someone, chances are I will say it publicly because I don't want to take part in some cloak and dagger bullshit in the shadows. I prefer there to be a level of transparency in how I operate. Which again is why I'd prefer the list to actually try to solve interpersonal problems as opposed to ignoring them till they go away.

I mean, I don't know, I'd rather deal with a short burst of intense discomfort than trying to ignore a small nagging one for months on end...which is unfortunately at odds with how things are apparently dealt with.

It's just annoying because I know the list can be better than that. Either that or it's all been phony sympathy and empathy meanwhile everyone is just waiting to see someone mess up and then attack.

grrrrrr

2008-12-02T17:03:00.000-08:00

before the holiday I was telling my psychologist how optimistic I was about things. I had the driving down, new psychiatrist, things seemed cool. Ever since Friday I've been shocking on and off. Right now it seems the most likely culprit is my husband (haha!) as he was sick for a week and chances are I picked up his cold (I guess I have some swollen lymph nodes and my right ear is inflamed) and the cold/virus/whatever is causing my mast cells to get all up in arms.

Soooo I'm on Atarax until this calms down. Atarax is very soothing, which is really needed since I was experiencing some serious tachycardia during my attacks...and tachycardia is really really scary, and of course anxiety leads to more tachycardia which leads to...you get the picture.

so that is where things stand for me.

here we go again

2008-11-30T11:39:00.000-08:00

So I've been doing very well in general since my Masto diagnosis. Up until last night, the only time I came close to shocking was when we were in the car accident, and that was probably caused more by stress than anything.

Last night I had dinner, was watching TV with Ethan and Peter, and suddenly my heart rate went up (it has been high for a few days) and then I started sweating, and shaking, and feeling really nauseous, and then my stomach contents decided they needed to get out of me in the fastest way possible resulting in terrible stomach pain. I was able to stave off the vomiting (i really don't like vomiting, plus
once I started feeling really unwell i popped zantac and benadryl and didn't want those to come back up) and laid in bed, stationary, until i was able to meditate and get my heart rate back down (the drugs helped obviously).

Long story short, I don't know what happened, or more importantly, why. I don't know why my heart rate has been elevated (my pcp had suggested a virus when I saw her Friday) I don't know why all sorts of badness happened last night as I haven't deviated from my habits at all.

Has anyone had a shocky episode for what seems like no reason? I think I barely dodged having to use my epi pen last night or going to the ER (Ethan and Peter took shifts watching me while I slept to make sure I was breathing, and breathing normally) and I'd love to know what happened or if people have experienced episodes like these with no really obvious cause.

Luckily I have an appointment to see my Masto doc later in the week anyway, though, so that is good. I'm going to try to get in to see my PCP tomorrow to have some more bloodwork done to see if anything looks off, and maybe see if I can get another EKG or something.

The whole experience was just very scary and unreal and well, just wrong. I don't want to go back to feeling like I did in the spring of '07. That was a terrible time in my life that does not warrant repeating. I imagine this is a sentiment similar to that of many many many masto patients.

ow ow ow ow

2008-11-28T22:09:00.001-08:00

Ever since I went on the Cipro I've had on and off leg pain. It's been a blast. It comes and goes, though in the past few days it's gotten a lot more concerning.

I went to see my PCP (something I am loathe to do, even moreso after the stupid somatic diagnosis) and she did a d-dimer test which came back negative (which I feel pretty good about since false negatives are really rare) and also listened to my lungs and did an EKG, neither of which seemed indicative of a clot. In addition my back has started aching and I have little to no appetite.

I'm seriously bummed about this. I don't know if it's viral, an infection, or what. All I know is that it hurts and that my heart rate is up (not too high but around 100, which sucks because I had it down to the 80's for a while there when I first started Gastrocrom.

All in All I don't know if this is masto or something else. I hate the whole trying to figure out what/why I have certain pain.

some progress

2008-11-26T11:03:00.000-08:00

I know recently a lot of my blog has been focused on my mental health as opposed to my physical health, but I think we all can underestimate how important it is to keep the former up since it so strongly influences the latter. This is true for everyone, possibly even more true for masto patients since stress and depression can influence episodes of mast cell degranulation, causing a cyclical nightmare of being stressed about getting ill, and having that stress play a major role in having a shocking episode. So getting one's head in order is a big deal.

I have a phenomenal team of doctors. I feel comfortable and confident in all of their abilities, they are all knowledgeable about masto, and none of them seem to conform to that whole disdain for sick people category that I've read about (long story short, chronically ill patients present a problem for many doctors because they are living reminders of the shortcomings of the medical system as well as their own skill. Doctors are human beings too, so of course it is frustrating to them to be presented with a problem they simply cannot fix). My one shortcoming has always been my psychiatrist. Now, I adore my psychologist, but she obviously cannot prescribe medication for me, and since my current psychiatrist is a useless prick when it comes to contacting my other doctors to discuss medicine, this has become more and more of a problem. He's stubborn and lazy about it, which has left me in this going back and forth between him and my other doctors relay that is very frustrating and insulting.

My PCP found out about my struggles with him, and how over the course of the past year I've been seeing this guy with little to no progress...I was infuriated after my last exchange with him as well as the fact that after having been under his care for a year for anxiety he felt "unqualified" to fill out the anxiety portion of the paperwork my lawyers wanted...That just spoke of how little he knew me if he was willing to prescribe Klonopin and antidepressants for me, yet felt unable to articulate why. She suggested that I see the new psychiatrist in her office and I happily jumped on the opportunity.

Yesterday was my first appointment, and it really was a watershed moment for me. By nature I am a pretty stoic person. I can get pissy or indignant, but I rarely every cry. I don't know if it's nature or nurture or genetics or what, but I've never been a big one for crying. Within minutes of meeting her, I was bawling, trying to find the words to explain what was physically wrong, when she stopped me and said, "I've read all your medical files, I -know- about mastocytosis and what I don't know, I'll contact your doctors to fill in the blanks.. I want to know about how you are feeling". I think in that instance alone she expressed more compassion and more interest in me as a patient that my previous psychiatrist did. So we talked about emotions and stress and all of that and she then said, "Well, I hope you didn't come here today expecting a prescription for a new medication. Before I do that I want to research with antidepressants have both the lowest side effects and the highest antihistamine properties. In addition I want to talk to your mast cell specialist, as well as a few I know myself, to determine the best course of action."
I was so happy about that statement, especially in light of the recent issues that I had had with my current psychiatrist refusing to contact my masto doctor regarding the Remaron vs. Doxepin debate that I nearly started crying again. This woman obviously understands that she is dealing with a patient where it is difficult to determine what is a physical vs psychological complaint and also is aware of the fact that due to my underlying illness that it is going to be even harder to figure that out. She also felt that the MMPI was useless in determining anything about me due to the fact that I have a chronic illness, and that the idea that any doctors, upon reviewing my medical charts, would say I had any sort of somatic illness was just ridiculous. So it was awesome all around.

So, I guess what I am trying to say in my overly verbose manner is that it is really important to be happy with the care you are getting. Obviously you aren't always going to get the answers that you want from a doctor, but you need to feel confident in their investment in you, their understanding of your illness, and especially in the realm of mental health, your overall compatibility. For the longest time I just assumed that since my psychiatrist was part of BIDMC (where the bulk of my other doctors are) that everything would work out...and it didn't. I persisted in seeing him even though I didn't feel any sort of connection from the start because I assumed his primary function was just to prescribe maintenance medication for me, when realistically I should've been looking for better medication since in a lot of areas I was simply treading water. My stubbornness to see how negatively the dynamic was impacting me and slowing down my progress serves (to me) as a good lesson in terms of being able to identify when it is time to give up.

So now I am going to call him and tell him I no longer will require his services. Yay!

A few things

2008-11-24T11:22:00.000-08:00

Life has been pretty busy and/or insane since my last few posts. The most noteworthy is that our car had a tree fall on it...This is good and bad. See, I don't drive. Not because of my illness, not for lack of wanting to, but more because up until recently it was never necessary. I grew up in a suburb of NYC where there was decent public transportation, and pretty much everything I wanted to do took place in the city anyway where there was no need. I was going to get my license before I moved to Boston, but that summer my mother had two brain aneurysms, so the summer that was intended for license acquisition turned into the summer spent in the neuro-icu. Once I moved to Boston, I was living in Beacon Hill and there was absolutely no reason to drive since a) I was in college and living on campus and b) everything was in walking distance.

Since then I've moved a little outside the city (I live outside of Cambridge now) and getting around on the MBTA holds less and less appeal. It can take around 1+ hour to get to a doctor appointment, a lot of places I want to visit are outside the city, I don't like being exposed to so many germs, and the MBTA has been sucking.

So how does this relate to our car getting hit by a tree as a good thing? I've been taking driving lessons, however the aforementioned car is a standard. Now, I can handle learning how to drive in a fairly metropolitan and congested area, and I can handle learning how to drive a standard, but the two at the same time? Not a good idea. So I've been learning to drive on an automatic, and while our poor crushed car is waiting to be fixed, the replacement car is also an automatic. So I can get in all my three point turns, parallel parking and backing up that I need to before my driver's exam (which, ideally, will happen either before the end of the year or my birthday in January).

I really think that driving will give me back a lot of the independence that I lost when I got sick. I think it will be a good thing.
-------------

In other news, I explained everything to my psychologist re: what happened with the psych evaluation and my psychiatrist, and she strongly recommends that I get a new psychiatrist, which I agree with strongly. In addition she feels that the psych evaluation was completely off, as she's been seeing me for a year now and has never seen any evidence of a somatoform disorder...In her opinion, the psychiatrist that was doing the evaluation probably based the bulk of the evaluation on my MMPI score, and apparently there is controversy regarding the MMPI and illness and "fake bad" results. She feels that while the test results might show that the taker (being me) showed evidence of a somatoform disorder, the reviewer wasn't taking into account that the person taking the test had a disease that mimicked the bulk of symptoms that someone with a somatoform disorder would have. I mean, hell, if an alarming percentage of people taking the test who were institutionalized came back as "malingering" it totally makes sense that a person taking it with a chronic physical illness might come back as having a somatic disorder. While this won't necessarily help with the disability case, I do at least feel vindicated.

It's difficult to explain. Post diagnosis I am extremely aware of my body and any errant aches or pains I may have, because honestly it scares me. It scares me that some organ might be affected or that I have something else arbitrary happening that might warrant a diagnostic test that is high risk (like say, a CT-Scan with contrast) but in reality I need to accept that a) life is unpredictable and that I can't wait for some other shoe to drop and b) there will come a time where I have to go outside my "safety zone" and that my stressing over it is not making things better...it is probably making them worse. To interact with me on a daily basis, you'd be able to tell I am somewhat limited (mostly in terms of my intolerance to extreme cold and my strict diet) but it is not the definition of who I am...and that's the important thing.

Calcium

2008-11-19T09:28:00.000-08:00

I have osteoporosis (whoo) and to date I've been avoiding taking calcium as I wanted to let my body acclimate to new meds. That said, what would -you- dear readers, recommend?

pffft.

2008-11-14T22:13:00.000-08:00

Lately this has become my griping about doctors sounding board. I assure you that I am generally not a cranky or unsatisfied person but whatever.

So, traditionally many Masto patients take Doxepin for fatigue/depression because aside from being a tried and true (or one could argue "old") antidepressant, it also has a ton of antihistamines in it. The whole killing two birds with one stone thing (or I guess alleviating two symptoms with one pill thing)

My psychiatrist (Who for the record is -not- the one I posted about yesterday, as he himself felt he was underqualified to write an evaluation of me, and of who I am no fan mostly because he seems sort of cold and removed...something evidenced by the fact I've been seeing him for a year and he feels incapable of writing a review on me) is not keen on Doxepin because it is old, because there are side effects that are unpleasant, because higher doses are required, etc etc. He instead has been pushing Remaron instead, as it is newer, has antihistamine properties, less side effects, lower doses are required, all that stuff. However, from my totally unscientific polling of the main masto list, it seemed like I couldn't find a single person using Remaron to treat both their masto and the resultant psychological side effects...It seems like Doxepin is generally the gold standard.

So yesterday I went to talk to him about getting a script for Doxepin and he got all pissy that I didn't want to go on Remaron instead, since he was incredibly attached to his idea. I explained to him that I was cautious because I didn't know anyone who had used Remaron while it seemed quite a few people had used Doxepin to great advantage. He was being very difficult about it, so I asked him to call my masto doctor (who practices in the same building as him) to discuss the pharmacological pros and cons between the two medications since we were looking to use it to both improve my energy/mindset as well as to lessen my histamine burden. He got all reticent about it, saying that if I was deadset on Doxepin then he'd write the script and be done with it.

Now, I mean, I'm not a physician, I only have anecdotal evidence that one drug is preferable to the other, and I would prefer if my two doctors spoke about the medical, pharmacological benefits of the two drugs and which would be better. Why it is that doctor A thinks and commonly prescribes drug A to her patients and doctor B finds drug A to be an outdated and risky drug that could be successfully substituted with drug B. The two of them, as peers would have a far more intelligent conversation than I could have ferrying information between the two of them. Eventually it had to come to me acting like a spoiled child, saying I would refuse to take any medication my psychiatrist prescribed for me until he talked to my masto doctor.

This is not one of my proudest moments. While I am a persistent and headstrong person (often to a fault) I am not one to be so brattish. While my refusal to take any new meds prescribed by my psychiatrist would put me in absolutely no harm, it was a regrettable but necessary stance. I cannot believe that it took that measure to get him to agree to call a physician who is literally -2 floors- above his office. He is so caught up in the concept that is perspective is clearly the only logical one while putting my more pressing diagnosis (being the Masto) ahead of anything else is very disconcerting to me. That coupled with the fact that after having been under his care for a year he felt incapable of filling out my lawyers paperwork makes me feel that it is time to find a new psychiatrist. The main reason I had picked this doctor is because he works for the same hospital as my masto doctors, and his reticence to communicate with them regarding the best course of action for my treatment plan without my making ridiculous grandstanding statements is very unsettling.
------------------

In other news, I drank -coffee- today. Typically I get a decaf iced coffee from Dunkin Donuts (one of the only non organic, home prepared things I will ingest) however today the barista apparently decided I needed an extra kick...which in and of itself wouldn't be a big thing but I have only ingested trace amounts of caffeine over the past 2-3 years (I stopped drinking alcohol and coffee well before my diagnosis) and HOLY COW I WAS SO BUZZED AS A RESULT. It was amazing. I felt like I could take over the world. While my unexpected coffee high was ridiculous pleasant feeling, the resultant crash...not so much. Nothing at all to do with masto, but I thought it was amusing that I was buzzing around on caffeine the way I imagine one would be on a more illicit substance. I am sort of wondering if I should add coffee (in lesser amounts) to my diet since I had markedly higher energy levels today and it felt super good. However, I need to see if caffeine is ok for the bones (i know soda is bad for the bones, but I don't know if it is the sugar, corn syrup or myriad of other ingredients)
-----------------

Finally, in the "Bridget never watches television" file, I am just getting around to watching the HBO docudrama on John Adams and it is incredibly good. I still need to read the book that provided the source material as both it at 1776 are sitting on my desk...so good. All television should be this gripping instead of inane like Grey's Anatomy and its insulting depictions of, well, everyone. HBO and the BBC also teamed up and made this really riveting docudrama about Saddam Hussein called, "House of Saddam" which a friend downloaded for me...also really amazing. Though I'm a sucker for generally historically accurate dramas.

#$@$@

2008-11-12T21:58:00.000-08:00

This is unbelievable and I just want to vent for a second.

So I'm going through the whole disability process, and my lawyers wanted me to go through a 3rd party psychological evaluation re: the anxiety that has gotten bad as a result of the masto and all of that. While I don't necessarily feel like I have overwhelming the-sky-is-falling anxiety, the idea of going into shock scares the hell out of me to the point where I do avoid situations where it may happen (probably to a extreme extent at time), generally try to avoid going out alone, avoid hugging people wearing perfume, avoid eating out, stuff like that.

I'm guessing my lawyers are trying to cheap out here and say that I'm disabled due to anxiety (or have comorbid anxiety be a large portion of my case, which makes sense since most masto patients do have issues with depression or anxiety or the oft mentioned "organic brain disorder") since that would be far easier to get through the courts than saying I'm disabled due to a rare disease that most physicians don't fully understand (one could argue that about the specialists too I'd wager, since there seems to be a lack of agreement re: the consensus statement, diagnostic requirements, etc). I'm not 100% certain that is their strategy, or if they just wanted to confirm that I have anxiety issues that could at the current time play into my inability to work (I am also being seen by a psychiatrist and a psychologist for anxiety, especially since anxiety can trigger mast cell events...making a pretty negative cycle of events which I 100% agree lends to my being overcautious in many situations)

So, we all also know that it seems to take somewhere between 5-10 years (on average) for someone to get most orphan disease diagnoses, including Mastcoytosis, since it's not common and therefore not commonly looked for. I mean, almost 5 years ago I had one of my UP biopsied because I was concerned about Basal Cell Carcinoma (my father has it) and the skin sample came back full of histamines and the dermatologist I saw at that time said "Huh, that's not common. It's probably nothing to worry about though...If you find the spots unpleasant to look at, we could always remove them with laser surgery". It wasn't until a few years later when that doctor was replaced and her replacement was looking through my chart and saw the histamine levels in my skin, was astounded at her negligence and blatant ignorance of the fact that something aside from cosmetics was obviously wrong with my skin sample. He happened to work with Dr. Castells at Childen's Hospital, recognized that my biopsy reports and other symptoms I had had listed in the hospital database looked like masto and asked me to let him do a biopsy, some bloodwork and some urine work...which lead to my Masto diagnosis since my tryptase and urine histamine levels were off the charts.

Had the first dermatologist I saw back in Jan 04 actually followed up on the abnormal but in her eyes unimportant findings of an extremely high histamine load in my skin, I would've had my diagnosis -that- much sooner. My stomach would've been spared and I might've been able to start preventative treatment to ward off or lessen the osteoporosis I've got today. But she didn't, and so I walked around for a couple more years wondering what the fuck was wrong with me when a few giant puzzle pieces were right there...just overlooked. Yeah, I'm bitter.

So, I go see this psychiatrist for this review and he concludes that leading up to my Mastocytosis diagnosis I had a Somatoform* disorder and then I just happened to get a diagnosis for a systemic illness that just happened to explain every single symptom that I was complaining about in the years leading up to my diagnosis.

Prior to my diagnosis I was complaining of bone/joint pain, brain lesions, GI disturbances, chronic elevated WBC and RBC, fatigue, and chronic rhinosinusitis. EVERY doctor that I have had, upon finding out that I was diagnosed with Mastocytosis universally said, "Oh well now everything makes sense!" However in the eyes of this psychiatrist, I was apparently physically healthy (while psychologically unhealthy) until I got diagnosed with masto, however I was just convinced I had all the above symptoms. I then just happened to get diagnosed with a disease that literally explained -every-single-one.

This just seems ridiculous. I have no doubt that I am at times over anxious or over cautious about triggers and going into shock. I have no doubt that I am over
anxious about getting sicker. HOWEVER, I do not see how it is logistically possible for me to have a Somatoform disorder (which means that there are -0- clinical findings) prior to my diagnosis. That would seem to imply that I wasn't sick until the day that I was diagnosed. And I can assure you all that for certain things (like say, my diverticulitis, brain lesions, gastritis, WBC and RBC counts) I did
have clinical findings since it would be impossible for me to make that stuff up. I mean, who convinces themselves that they have asymptomatic brain lesions? What 28 year old would think to convince themselves they had diverticulitis? I mean, I admit that before I got my diagnosis I had tons of useless appointments with various doctors trying to figure out what was wrong with me, but the consensus always was that -something- was wrong due to my abnormal labs and x-rays, the question was always, "What?" or "Why can't we figure it out?"

I just find this incredibly disheartening. It feels like in this guys eyes, the last year and a half of treatment mean nothing, or that it was impossible for me to have had masto prior to my diagnosis or something. Seriously, it's just illogical. Of course a patient with a rare disease that can take years to diagnosis is going to end up being shuffled off to many specialists, might look at stupid shit online like mercury poisoning or candida syndrome or whatever wacky homeopathic or naturopathic cures are out there since they inevitably offer some sort of panacea towards those who feel ill with no definable root cause...but when one of those patients ends up diagnosed with a legitimate disease -after- a few years of that nonsense, the idea that the behavior prior to the diagnosis would indicate a somatoform disorder just doesn't make sense.

Just read "How Doctors Think" to get an idea of the hostility that the medical profession holds both towards women and the chronically ill to get an idea of what a negative eye is being pointed in our direction...So yeah, for this doctor to make a diagnosis like that just really defies logic.

* for those too busy to look it up, a Somatoform disorder is a psychological disease in which the patient exhibits physical symptoms with absolutely no clinical findings to back them up. It doesn't discount the physical pain that a patient may be going through, however the cause is solely psychological and not physical, therefore requiring therapy as opposed to medication. I can assure you that no amount of SSRIs or therapy helped me with my symptoms, however Gastrocrom and Ketotifen certainly did, and helped me at a point where I assumed -no- medication would help me.

i hate this article and it warrants repeating

2008-11-09T23:32:00.001-08:00

http://www.pittsburghlive.com/x/pittsburghtrib/news/health/s_551395.html

this is one of the biggest pieces of incendiary, poorly researched things I've ever read. Firstoff, the child is not getting proper treatment because he's part of a research trial, something in my mind a child should never be part of because they cannot consent to it. Even as an adult I am leery of being part of a research trial because I will have little control over my medications if they do/don't work for me since the whole part of a research trial is generally to research specific elements of a treatment protocol.

Second, the kids diet is complete and utter garbage. Many people with masto do incredibly well on organic diets, low histamine diets, or low salicylate diets. These diets are typically low in additives, preservatives, allergens, etc. Sure it might be a pain in the neck to cook the majority of your food, but then -you- are in control. You know what is going in to you, you know what makes you react and what doesn't. Fatty fast food isn't good for anyone, let alone someone with a compromised immune system. If you are worried about your bones, you eat yogurt, drink milk, get vitamin d (esp from the sun), if you are worried about your tummy you fill it with good, healthy, whole foods. You don't lock yourself or your child away in an indoor playroom and hope for the best.

Thirdly, myself and a few other masto patients contacted the author of the article because we felt the modern day leper manner in which she portrayed masto patients was inaccurate, based on the anecdotal evidence presented by -one- family, based on their rather extreme ways in trying to manage their child's life. We were all met with hostile or short responses that mainly consisted of "well this isn't meant to explain the entirety of mastocytosis, just this one situation, I wasn't doing a research piece, just a human interest one". So so much for journalistic integrity! You write a typical "OMG ALLERGIC TO THE WORLD" piece on a rare disease, offer -no- resources for people who will inevitably find it when they google mastocytosis, and don't even care that you're article is innacurate.

Fourth and most disgusting and most misleading is the idea that his urticarea pigmentosa can turn into cancer. Complete and utter unfounded bullshit. It just doesn't happen. There is a slim, slim slim slim slim chance that mastocytosis can turn into mast cell leukemia. My doctor (Dr. Marianna Castells) is one of the leading researchers and physicians treating mast cell diseases and in her career she's seen around -2- cases go that route, and it had nothing to do with the UP. I showed this article to her and she felt it was a travesty.

Fifth - the kid has never even had to use epi. This could indeed be because he's locked in the basement eating crap and wearing a diaper, it could be because he won't ever go into full shock (i haven't and my tryptase level is through the roof, and as you can see elsewhere in this journal I am covered with UP). I go out, I get stung by mosquitoes, I go running to increase my bone mass, i mean, yes I am limited in many ways, but I am not a shut in to the degree the Boytim child is, and if I ever get to that point I don't know what I'd do. It's not living, that much is certain.

In the end, this article is written for one specific purpose: to help raise awareness for a fundraiser the family is holding to build a completely unnecessary indoor playroom for their child who they are convinced is going to die if he steps outdoors. Well, I have news for them; I know people who had childhood masto who grew up to be doctors at one of the best hospitals in the country, I know people who have run marathons, who are teachers, researchers, people who live fulfilling lives that include venturing outside.

So I beseach you, people who find my blog, don't take that article at face value. It is, admitted by the author, a human interest piece that is not meant to represent mastocytosis, had no research done other than the experiences of the family in question (whose own treatment of their child is incredibly risky and ridiculous) and one immunologist who I have -never- seen listed in any list of mast cell specialists.

2008-11-06T06:08:00.000-08:00

a friend of mine died of colon cancer. she was my age, in perfect health. she was the picture of living, so vibrant, energetic to the point of being exhausting, just so full of life and spirit that it was amazing to be around her. a few weeks ago she started feeling run down, at first chalked it up to her high stress job, went to the doctor to make sure she didn't have the flu, and somehow they discovered she had late stage, metastasized colon cancer. apparently her oncologist felt she'd probably had it for close to a decade due to how invasive it was.

a decade of living with cancer without even realizing it. she was a smart person, so it's not like she'd avoid going to the doctor for a few years while trying to ignore blood she was passing in her stool or something...she just was asymptomatic...and so full of life and vibrancy.

it just struck me, because lately i've been living so many shades of grey, in this inbetween state of car accidents, kidney problems, angry mast cells...and it in many ways rules my life, it makes me aware of my mortality, it makes me aware of my fragility, it makes me scared for what comes next (if anything) and to think that someone I knew, someone I always regarded as so full of life and energy and color and power and strength and health was in truth riddled with such an insidious disease. it seems perverse to me on some level...

Health

2008-11-04T05:16:00.000-08:00

Things are not looking great healthwise. I've been urinating blood on and off for the past few weeks...We had a bit of a red herring in that my partner came down with some sort of UTI-ish illness, and had assumed that they may have passed it to me. I did my three days of Cipro (never again) had a minor improvement in symptoms. Last week I had a cystoscopy performed (as bladder diseases are not uncommon with ISM) and it came back clear. My urologist was very impressed with how healthy my bladder looked.

Two days later and it was again with urine with gross blood (and when I say gross I mean visible, not OMG ICKY!) accompanied with some fabulous back and flank pain. Like, amazingly bad.

Back to the urologist who felt it might have been an infection caused by the cystoscopy, so I did another urine culture which came back negative.

So it means it's my kidney. I don't know if it's a cyst, polyp, disease, cancer, stone, or what. My urologist wants me to have a CT-scan with contrast.

For those of you really familiar with this illness, you know how exciting that option is for me.

Since I am sick with something, my mast cells are already out of control. I've been taking more Benadryl than I have in a year to stay stable, and because of that I am even more hesitant to go straight to the CT-scan with contrast. If I were feeling more stable, I'd be all for it. But my hr/bp has been all wacky, my fatigue is intense, and my pain levels are quite high. All of these factors make me less excited to go straight to a test where there is a very high risk of anaphylactic shock...because really, who wants to go there?

I've got an appointment to see my urologist this afternoon. I am hoping that we can see if we can use the CT scan as the last resort, since in my reading I've found that certain kidney problems can be found through various ultrasound techniques, regular x-rays, and CT-scans w/out contrast. Now, to be fair, if I'm going to have the CT-scan, I may as well go all the way and take it with the contrast since that is a -lot- of radiation for a body to handle...but yeah, in general it is not the ideal option for me.

So I've got a call into my Immunologists office to get a refill on my prednisone script (the bottle of pills I have is nearing its expiration date) and am a bit of a bundle of nerves.

Remember to Vote

2008-11-03T22:45:00.000-08:00

i don't care who you vote for (well, honestly i kinda do but it's not my place to tell you who to vote for) but just remember to get out and vote.

bladders and brains

2008-10-28T20:57:00.000-07:00

today i had to have a cystoscopy...i was terrified since this was my first "major" medical procedure since the MRI that seems to have tipped off the maelstrom of masto symptoms. the idea of having a procedure that could set me off was frightening.

i took some premeds (50mg benadryl, 1mg ketotifen, 150mg of zantac, 2ml of gastrocrom) over the course of the 90 minutes prior to the visit. i was terrified. this was exacerbated by the fact that my husband had to drop me off at the hospital and park a few blocks away, so i was waiting by myself. then when i saw the nurse, she immediately got my protocol wrong, wanting to clean me off with an iodine based cleanser, using latex gloves, wanting to give me a opiate topical ointment...i started getting even more nervous because all of those things were iffy for me with the masto. He came in and explained to her that I was very sensitive, and we needed to use a different protocol and everything was somewhat better. i was still terrified. i hadn't felt my meds kick in (usually they knock me out).

my urologist was very considerate, telling me that I didn't need to have the test if I wasn't ready since there as the potential for my stress to cause problems. he was so nice, the nurse was so nice, and i was so terribly scared. then they allowed my husband in the room so we could discuss whether or not to postpone the procedure...they didn't put any pressure on me, they didn't seem frustrated that i might back out...it was so nice.

i was about 5 seconds away from backing out. the idea of shocking again was leaving me petrified. but then i realized that if i was scared today, i'd be scared next week (unless i possibly threw some steroids on top of my protocol) or the week after, so i should just suck it up and get the procedure done.

so i did. it was not that bad, especially since i had to have it done without any sort of anesthetic. my doctor was fantastic, explaining every step of the procedure to me as it went along, and then it was over...i'm not going to lie, it was painful when he used the second scope, but nowhere near as bad as i anticipated. thankfully my bladder looks perfect, no mast cells, no cysts, no cancer cells, nothing. so chances are the blood was either a uti or just something that happens. i had no white blood cells in my culture today, which leans away from infection, so that was comforting.

I was really proud of myself for going through with it. i had every opportunity to walk away from this mega scary experience, and i didn't. everyone told me it would be ok to postpone the cystoscopy for a week or two...but i didn't. i gritted my teeth and went through with it.

---------------------

things are still a little off. i think sometimes i am verging on hypochondria, since i read or hear things and decide that it must be something that's going to get me too...i don't know if it's the result of years of misdiagnoses or getting slammed with a really rare disease, but i am always waiting for that proverbial shoe to drop...lately i've become fascinated with chiari malformations, and am convinced that that is something i need to have looked at. this isn't entirely baseless, since i've had abnormal MRI's for the past 4 years or so, but i'm not really experiencing any of the main symptoms (like headaches) but because i have a sore neck, i've decided that that must be the next thing to happen to me. that and the fatigue and sleep issues just has me concerned...unrelated to my latest medical fascination I have an appointment to see a neurologist, so that works out well. hopefully i am in fact a hypochondriac, as I really don't want to deal wit another disease. of course i can feel myself being hyper-vigilant now, so whenever i get any headache or neck ache i just decide that that's it, my brain is slowly working its way into my spinal column.

i need a new hobby.

i hate thinking of pithy titles

2008-10-22T00:23:00.000-07:00

the quagmire that is masto-med continues. I hate to say it, but there is a huge part of me that is incensed by what continues to go on because it is in many ways cruel and repetitive and drawn out (and I only know a sliver of the details being somewhat of a newcomer) but another part of me is almost amused at how bizarre things are getting.

At one point the focus was all about one person being a mean big jerk (i've been chastised for my language so I'm trying to clean it up for the kids) and then suddenly everyone started being big mean jerks and now we all suck* for various reasons (seriously, this is the cliffs notes version because I am trying really hard not to play politics because I don't know the whole story, I don't read a lot of listmail because a portion of it does not pertain to me. People I like are getting into fights, and I know that I do not like that...especially in scenarios where I like all parties involved (which again is why I am giving the goofy, inaccurate cliffs notes version of the whole debacle.)

what I want to know is, seriously, where the %$#% is our moderator? did he just jump off a cliff? is he going all nero and playing the violin while masto rome burns?

Anyway, list drama is getting tired.

And oh,hey, speaking of tired, that is pretty much my constant state lately! I am unsure if it is depression (i am dubious on that since I have experienced depression, and my depressions are extremely dark) and have had all sorts of medicinal advice thrown at me. Doxepin, Adderral, Ritalin, supplements...it's a nightmare to navigate it all. I know my attention span is shut and I like sleeping a lot.

I also dislike my psychiatrist, which is good since he isn't returning my calls anyway...so I have an appointment next week to see a new psychiatrist to discuss my mental health medical options. Doxepin supposedly has worked wonders for some masto patients as it has antihistamine elements to it. So I think I might try that along with Asprin therapy and see where I end up. If that doesn't work, then I will look at stimulants, but that's sort of like throwing paint over a crack in the wall...the crack is still there, and might get worse, it's just hidden. I'd like to get to the root cause of things if possible. Somehow I am guessing that that is a sentiment shared by oh, 100% of the masto community, or any chronic illness community.

in other news, Mastocytosis got thrown out as a differential diagnosis on House this evening. Of course it was the worst-case-scenario-the-patient-will-die-in-days differential, but it's neat (i guess) that it still made it out there. I'm honestly surprised that it hasn't gotten it's own episode as I know my diagnostic process was intense, i got tested for MS, lupus, hiv, aids, hepatitis (which was discriminatory really, since the only "symptom" i had for hepatitis was the fact I am tattooed), tertiary syphilis (what?!?), severe anxiety disorders, and i forget what else. tons of things...it was ridiculous.

So yeah. I need more energy as this fatigue is killing me. I'm finally starting to shake the side effects of the Cipro (thank goodness) so I've been walking again...but I want to run.

*me for language. however i was complimented on my writing style when i'm not being all sweartastic. so that was nice.

Gah

2008-10-20T01:47:00.000-07:00

Tonight/This morning seems to be pissed off insomniac masto sufferers attacking each other on the list. It's like Lord of the Flies only we're probably all too sick to kill boars or lob boulders at each other, which honestly, is a good thing. I should spend time going to look for the conch instead of posting here I think.
---------------------------------------------------------

Not too much to report here. Still feeling the side effects from the Cipro. I am apparently (according to my PCP) no longer allowed to take anything from the quinolone family. Every since I took it I've felt like my legs were going to pop. First it was my calves, then it moved to my knees, and now it is sort of alternating between knees and ankles, which is all sorts of not awesome since that is where the tendons go.

So yeah. I've been laying ridiculously, boringly low and it is incredibly frustrating. Tonight I finally resumed walking at a veeeeeery slow pace (I have a treadmill) with no ill effects, so we will see how that goes. It feels like a damned if you do/if you don't situation, since walking is good for the heart and bones, and could result in a messed up tendon. But it's possible doing nothing could result in tendon damage too.

In other news, 2 things

1) going to see a urologist on Thursday to figure out why I was urinating blood. The cipro seems to have wiped it out, though my husband has something similar to a uti which he possibly passed to me. Ethan had Epididymitis which is treated with an entirely different class of antibiotic, being Doxycycline (which he wrote me a script for too, even though I never saw him). Since I am only now getting out of Cipro hell, I am not too psyched to take another antibiotic, especially one recommend by a doctor sight unseen. My symptoms seem to have abated for the most part (lots and lots of water and unsweetened cranberry juice) so I'm in no rush to take more antibiotics. When I lived overseas people were honestly shocked at how often Americans took antibiotics, and I can't blame them. I feel like I am recovering more from the Cipro than the "whatever caused me to urinate blood" thing.

2) I am seriously considering Doxepin. I've been on the fence about it for a while because two common side effects are massive weight gain and tremors. I don't want to be overweight (again) and trembling (or going psychotic, but that's a rare side effect). Not that I'm thrilled with my appearance, as I'd like to lose like 5lbs or so, but obviously superficial reasons are not enough to avoid taking a drug. It's just that my energy levels have been terrible lately and getting lower and lower. I also want off the Klonopin (which was prescribed for me back when some dumbass ER doctor decided I was having panic attacks instead of anaphylaxis...and it's a drug one needs to taper off of slowly. The Doxepin would help with that tremendously, though truth be told I've been trying to wean myself off without the Doxepin to mixed results. I've had flushing episodes again, which stopped with the Klonopin.

So yeah, not too sure what to do.

So that's the state of the Bridget.

$@#%

2008-10-13T23:09:00.000-07:00

Sometimes it feels like one thing piled on top of another.

So last week I had noticeable blood in my urine. I immediately went to my PCP to have some tests run...obviously there was blood in my urine, and we're still waiting for the stupid cultures to get back, but all signs pointed to a UTI, so it seemed prudent to get me on antibiotics ASAP to clear it up before it got to my kidneys.

I went on Cipro for 3 days (500mg 2x a day) and the blood cleared up over the weekend. Since today was a holiday I was unable to go to my Dr.s's office to do another urine sample to see if in fact everything is ok, no blood in the urine, etc.

In the interim I have developed these massive muscle aches, especially in my calves and quads. Of course Cipro can cause all sorts of muscle and tendon problems so now I'm all sorts of terrified. I stopped the Cipro at 1am on Sunday, so I'm hoping this is just some residual nonsense that will right itself quickly. Of course, when I was trying to poke around online for some information regarding Cipro/muscle pain I was greeted by a ton of sites claiming Cipro ruined their lives, calls for class action lawsuits, calls for the product to be taken off the market...really heartening stuff to say the least.

The worst was today though, during a driving lesson, my right leg cramped up so badly I had to stop. In addition to that, the pain/anxiety about the pain set off a minor mast cell storm/degranulation/whatever and I began experiencing a lot of GI pain. Obviously those of you with masto know what the unpleasant outcome of that was. I've felt out of sorts all day since it happened. To be honest, this was my first driving lesson after the accident so I was starting off nervous to begin with...the leg cramping and thoughts of black box labels just exacerbated everything.

whee.

Hopefully tomorrow I can get in touch with my PCP to see if this leg stuff is normal, what I can do to prevent further injury, and find out what the hell was up with the possible UTI.

In the future I don't think I'll take cipro again unless it is totally necessary. I've just read too many horror stories, have felt terrible since taking it, and am concerned about the long term side effects. In general I am very leery of all medication, but this seems somewhat valid.

In other news, this week my partner is traveling to Minnesota for the annual TMS conference. I will not be joining them since a) I don't like flying b) I don't feel well c) I don't want to go to Minnesota. Hopefully they will come back with some excellent information.

not a pleasant day at all

2008-09-15T19:16:00.000-07:00

i was in a car accident this afternoon. We were stopped at a toll booth, and the woman behind us seemed utterly unaware that either there was a toll booth or a car in it, so she slammed into us.

We are both relatively ok, but I dont know if the shock of impact or anxiety set
me off rather badly. Tachycardia, impending doom, gi symptoms, obvious increase in vasculitis on my stomach, my up were more obvious...it was terrible. That's all before dealing with the pain of the actual accident.

Ended up in the Brigham and Women's ER to make sure i had no skeletal damage (since I have osteoporosis and all) and it turned out the resident dealing with me, while not having SM, had UP! I thought that was sort of random. He also had some lovely tattoos which made me jealous. who knows, maybe in a few years.

So now I'm on a 30mg course of prednisone for the next 4 days to avoid "latent anaphylaxis" as per Dr. Castell's orders.

So my questions:

1) Does it seem incredibly odd that a car accident would set off a mast cell episode? We were hit pretty badly from behind, so my whole body lurched forward and slammed back into the seat. I don't know if it was the physical or emotional trauma, but within minutes I could feel my heartrate accelerate, my bp drop, and my stomach get very
upset.

2) How do y'all tolerate prednisone? When I took my first dose in the hospital, I flushed in my chest (which seems to be where I always flush).

3) Is a 5 day course of 30mg prednisone common to ward off this latent
anaphylaxis?

To say the least that has been a dramatic downturn for the day. It's been a while since I've been in the ER, and didn't really want to be there for shocking due to car accident since I already knew to avoid those.

general update and asprin?

2008-09-14T00:55:00.000-07:00

In a stroke of genius, about a month ago I stopped taking my Ketotifen, as I was certain it was doing nothing for me...and at first my cessation of the drug and the lack of side effects seemed to prove me right. Then suddenly I was flushing, my blood pressure was dropping (i have a blood pressure cuff at home) and I felt terrible. I grudgingly went back on the Ketotifen, and surprise surprise, I felt somewhat better.

One thing I have not had a reprieve from, pretty much ever, is the soul crushing fatigue. Now I feel this is a two pronged issue.

1. like it or not, I am probably physically depressed about all of this. I had all these grandiose plans that got obliterated post-diagnosis. Not that life stopped necessarily, but it slowed down more than I appreciate.

2. The masto and my meds. Both can cause fatigue. It's apparently tricky to get the right balance.

I saw my masto specialist this week and she suggested that I try a different therapy to combat the fatigue. ASPRIN. I love how I have this disabling disease that is primarily treated with over the counter drugs. In the process of applying for disability my lawyers asked me for my prescribing doctors. Now, I've got like, 10 doctors saying I need to be on disability for the time being, but they wanted prescribing doctors, which is so much harder since so many of the meds (claritin, zyrtec, zantac, benadryl, calcium, vitamin d) are OTC.

So yeah, my new line of defense against this painful fatigue is going to be baby asprin. I had to do a 24 hour urine histamine to get a base level for some hormone levels in my blood, and once that is sorted out, on to the asprin I go. I'm kind of scared since asprin is usually on the "do not want" list, but I'm trusting my doctor and the experiences of others on this one.

#@#@#$

2008-08-24T17:09:00.000-07:00

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

2008-08-24T02:54:00.000-07:00

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

Vanishing Spots?

2008-08-19T12:45:00.000-07:00

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.

reusable water bottles

2008-08-13T19:01:00.001-07:00

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?

faith

2008-08-04T22:47:00.000-07:00

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.

are you normal?

2008-07-28T18:23:00.000-07:00

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.
--------------

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.

Rabies Risk?

2008-07-27T22:09:00.000-07:00

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?

this is something we can all relate to, ill or not.

2008-07-25T20:42:00.001-07:00

Terrible Lawyer Experience

2008-05-13T12:28:00.000-07:00

So as I don't know if i mentioned it, but over a month ago, I was turned down for disability. This in and of itself is apparently entirely commonplace, as the system will do whatever it can to ensure not paying out to people, instead actively discouraging applicants by making it as tedious and difficult as possible. Once you receive your rejection you have 60 days during which you can file for a review. If that gets turned down (which it typically does) you then have to go in for a hearing, which is obviously incredibly upsetting, stressful, etc. I don't want disability to be a long term solution for me, but right now I'm not stable enough for a job, and honestly if i were to interview anywhere, explaining the 12 month gap in employment with "well i have this disease....." would probably eliminate me from the candidate pool immediately, what with the current economy being as it is.

I decided to skip trying to get a review without having a lawyer because I really wanted this process over with. A friend of mine spoke to his father (who is lawyer) and his father recommended a friend of his who *used* to do disability law. We met with said lawyer within days of receiving the rejection letter. He told us that he no longer did disability law since there was no money in it, however as a favor to said friend' dad, he would take my case. He then told us to do all the footwork for him (getting medical files, writing out histories, getting consent forms) so that it would minimize the amount we had to pay him since it would minimize the amount of work he would have to do. He also asked us to compile and tab my medical history to show which doctor covered which specialty and find out which doctors would be willing to write letters explaining why ISM is a systemic and generally devastating condition. He asked me to write out a 10 year comprehensive history of my medical health.

We jumped through all his hoops and fulfilled all his obligations immediately. We got all -15- of my specialists willing and wanting to write letters explaining why and how I was disabled. He told us that he would contact that doctors himself so as to coach them in how to phrase things so that they would be more understandable to the medial board at social security, that they shouldn't do anything until they heard from him. He told me to not start working on filling out the application for a reconsideration until I heard from him.

Then he fell off the face of the planet, saying that he would handle things and that we shouldn't contact him too much because he didn't want to feel like we were micromanaging him or the case.

I ended up in the hospital again last week (i had a burst ovarian cyst, the pain of which caused my masto symptoms to flair up like crazy), which of course resulted in my having to see a bunch of my doctors in the wake of my stay at B&W, and I asked them if they had heard from my lawyer, as the 60day deadline was bearing down on us quickly. As it turns out, he hadn't contacted any of them. We sent him an email asking him what was up, if our expectations were not the same as his plan of action in dealing with the case, etc.

This morning, we get an email from him stating that he's just too darn busy to handle our case (or more likely there wasn't enough money in it for him), and was so kind as to give us the referral number for the Mass Bar Hotline, something Social Security had already done when they rejected my claim. He also offered to overnight all the medical work that I had done to whatever lawyer I ended up finding, free of charge.

Now, this son of a bitch obviously knew he had a heavy caseload when he took on my appeal. He knew it when he kept giving Ethan and I more forms to fill out, more forms to pass along to doctors and hospitals, he knew it when he refused to return our 2 phone calls over the past three weeks (as more and more doctors were saying that they hadn't heard from him, we left a couple calls seeing if there was anything more we should be doing, making sure he had gotten all the proper documentation from us. totally cordial messages just wanting to know what was up since the deadline for my appeal was steadily approaching).

Now, with a little over 20 days to go, I need to find a new lawyer, fill out 15 new patient confidentiality forms, and get 15 doctors with incredibly busy schedule (as they are all top tier specialists in their fields, their time is incredibly limited) to write letters, otherwise I will have to start the entire process all over again, which takes months.

To say I am livid is an understatement. Not only did he completely fuck up my appeal process, he also made the colleague of his that referred us to him look terrible in the process, something he has to be aware of.

So now I don't know what to do. I'm going to call a few lawyer referral hotlines, and I also contacted some former coworkers who are lawyers (one was a partner in a lawfirm) to see if they have any recommendations.

This entire situation is just utterly disgusting and has just left me feeling completely and utterly demoralized. -15- doctors say I'm disabled, I've been paying into the system for as many years, I've got medical bills that are insane, and spent the past 40 days under the impression that I had a lawyer who was helping me navigate this whole system. If he'd contacted us weeks ago with this news it would've been upsetting, but this is just beyond reproach.

I have a phone interview with a law firm later today (they helped someone out on one of the larger masto patient lists) so hopefully that will turn out well. It just sucks that a)i have to go through this at all and b) my lawyer turned out to be a money hungry prick in the end.

i make stuff

2008-04-06T22:19:00.000-07:00

I'm not currently working, as I haven't been able to get my masto in check enough where I'd be able to hold down a full time job. Plus with the economy as it currently stands, having to explain the 10 month gap in my employment pretty much would kill any job interview in a second.

In my copious free time, I have been making jewelry, which I would love for y'all to go look at.

My dad and I are going to co-run this shop, with him making some awesome woodcraft stuff, and me making some (hopefully) awesome jewelry.

If you're reading this blog you've probably read this already too

2008-03-19T21:23:00.000-07:00

NEW YORK (Reuters Health) Mar 07 - Among children with mastocytosis, only those with extensive skin disease run the risk of severe anaphylaxis; all adult patients, however, are at risk, according to a report by German researchers in the February issue of Allergy.

In the first study to focus on the cumulative incidence of anaphylaxis among mastocytosis patients, Dr. Knut Brockow and colleagues attempted to identify risk factors in 120 consecutive patients at the mastocytosis outpatient clinic at the Technical University of Munich.

The researchers found that in children, the extent and density of skin lesions was a risk factor for anaphylaxis (p < 0.01 for each). In children, the severity of skin lesions was also correlated with increased serum tryptase levels (p < 0.03). No children with isolated mastocytomas developed anaphylaxis.

Among adults, in contrast, those with systemic disease, particularly those without additional skin involvement, had a higher incidence of anaphylaxis (p < 0.02). Some adults with cutaneous mastocytosis did, however, develop anaphylaxis. Overall, serum tryptase was higher in those with anaphylaxis.

The major triggers of anaphylaxis in this group of patients (where known) were hymenoptera stings, foods and medications; this did not differ from factors triggering anaphylaxis among patients without mastocytosis. Twenty-six percent of reactions in adults appeared to occur only after a combination of triggers, including alcohol, exercise and aspirin.

Anaphylaxis was severe in this study cohort and resulted in unconsciousness in 19 of the 36 adult patients who experienced it.

Because adult mastocytosis patients are at increased risk of anaphylaxis and there is no common predictor for it, Dr. Brockow told Reuters Health, all of them should receive an epinephrine autoinjector as a precaution.

Among children, however, "only those with severe skin involvement and high tryptase levels" need to have an autoinjector.

Allergy 2008;63:226-232.
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I carry epi with me everywhere, both in an inhaled version as well as two pens. my husband and best friend have been trained in how to administer the pen and both are cpr certified too. My best friend used to work at Boston's Museum of Science, specifically with kids, which is why he knows the epi protocol and cpr...my husband obviously learned it after i got sick, or became symptomatic or whatever you want to call it.

Not much new to report. My sleep schedule has been terrible, I wake up every few hours, and I can't figure out why. My mast cell dr thinks it could be histamines, but I'm not convinced. I'm going to see my neurologist soon, so we can discuss that. I'm also going to do a sleep study, but first we need to make sure the adhesive doesn't make me react

ugh

2008-03-10T12:25:00.000-07:00

some days i swear i am just drying up from the inside out due to all my medications. between this and the soul crushing fatigue, i'm just at a loss at how the next 30-40 years of my life are going to go. every once in a while i think it is ok to be really depressed about this.

Kim

2008-02-27T13:21:00.001-08:00

I don't know if you are on the Masto Med list but I saw this post today which I thought might interest you:

For your information....
I am told today that Dr. O'Lansky is now in practice in the Cleveland Clinic. She was in practice in Oklahoma. Spoke to the TMS Conference in Oklahoma and also was seen by several members of the Oklahoma Support Group.

humilty

2008-02-21T23:32:00.001-08:00

I have another journal that I write in, which is public, that has more trivial stuff, like my involvement against a well known religious group i am none too fond of (it has a few high profile celebrities in it, there's your obvious hint), the beginnings of my jewelry making, politics, random social stuff that I choose to share in a public forum.

I've slowly been trying to redirect health stuff here, as opposed to there, because I don't want to be known as the sick friend. This is an absolute impossibility, as I nearly went into shock at a friend's party (everything but the throat swelling. turned out she'd had her carpets cleaned, so chances are there was something in the cleanser that didn't agree with me) which caused a bit of a scene, and had a similar experience at some stupid ren faire that I went to, where again, hives, sweating, tachycardia, faintness, flushing...I had my epi pens out and ready (i was also in the company of either my partner or my best friend, both of whom carry my medical id card on them as well as my emergency protocol as dictated by my doctor and who are both trained in epi pen administration and cpr certified). The point being, while my friends love me (i believe), they also know I can't really do typical things like go out for drinks or go out to eat without it being a big production of planning ahead, reading menus, figuring out where the closest hospital is and what the fastest route is. It's difficult and annoying and scary for me, but almost moreso for them because suddenly "hanging out with bridget time" becomes "potential liability time"

I am sometimes brave and sometimes overly cautious. A few weeks ago I took part in a protest against something I'm not going to mention here (for safety reasons, it's a cultish organization known to seek out and harass people who speak against it) and stood out in the snow for 4 hours, brave and proud. It is an organization that once tried to convince a diabetic friend of mine that if they joined, and spent a lot of money, their diabetes would go away. They are an organization that preys on people like me. Scared, sick, possibly misinformed, possibly lonely...and for that reason and many others, I dislike them strongly.

As for my story...

Last year, last march probably, I went into work and told my manager I'd be leaving in May. We had big plans, you know. We were going to go to Costa Rica, come back for a few days, decompress, pack up our belongings, and go to England for a few months like we did back in 2004. My partner was going to work with the group over there and while perfecting the role of a faux-british housewife, I was going to study for the GRE.

Things went completely awry. Later in the month I got diagnosed with diverticulitis, and all my doctors were shocked a 29 year old with an incredibly healthy diet would have it so badly. I reacted pretty harshly to my antibiotics and painkillers, but just assumed they were strong drugs and that my reaction wasn't that out of sorts (flushing, itching, tachycardia). During the CT-Scan that showed the diverticulitis, the doctors noticed a hemangianoma in my back and my primarily care physician decided to have it re-checked with an MRI. So in April I had an MRI (without contrast) on my back and for what ever reason, I had my first big mast cell degranulation episode, something that happened repeatedly for a few weeks until i started experiencing some weird stomach mottling that made me make an appointment to see a dermatologist. The whole experience was terrible...doctors were convinced I'd developed an anxiety disorder, I thought I was losing my mind, everything was just wrong. Then suddenly through a set of random coincidences, I had an answer, or a potential one. I was referred to one of the top mast cell doctors in the country, and the diagnosis was confirmed: Indolent Systemic Mastocytosis with Urticaria Pigmentosa. Strangely enough, when I had my bone density scan done on my spine, the hemanianoma was gone, which led my doctor to surmise it may have been a cluster of mast cells.

Regardless of minutia, suddenly my world got turned upside down. Lots of doctor appointments, lots of trial and error with medications, lots of annoying stuff. It was really amazing how one day I felt really good (well good for me since even before this I rarely felt awesome as my spotty attendance record at work and social events can attest to) and the next I "sick". At first I kinda ignored it, I didn't tell anyone what was going on until I left my job, for some reason I liked leaving everyone under the impression (at work at least) that I was going off to do great things* instead of going off to try to be patched up.

It's been quite a few months later, almost a year, an anniversary I am dreading, and things are better, but they aren't great. Earlier on I was measuring days by doses of medication, now I'm measuring them by accomplishments that once seemed pathetically small, but now seem huge. I have days where I feel good and I have days where I feel like I want to just stop being because it feels like such a trial. (that sounds so fucking whingey and dramatic, urgh) but the pain and the fatigue and the fear of shocking are so strong, and the possibility this will be my entire life, that this may get worse, is just so daunting, and so dark sometimes.

The past few days, for whatever reason, hammered something home, which is that for the time being, I'm not better, my medication takes a ton out of me, and there's no humanly possible way I can work. And I loathe that. I'd love to have a job more than anything, but my good and bad days are so sporadic and dramatic it would be impossible. I have days where I wake up at 7am all sunshine and WHEEEE and days where I can't get out of bed. I had Ethan take a picture of my back the other day so I could see what it looked like when irritated. I know what my arms and fingers look like, but not my back.

Looking at it, talking to the doctors at length about my story, realizing how high my histamine and tryptase levels still are, how low my energy is, how far I still seem to have to go, how I pretty much have a doctor appointment every day for the next few months, working is really not an option.

So recently I started the wheels in motion to apply for disability. It's a huge tedious process and one I wanted to avoid as long as possible. I have to get all my medical records together (I have a lot of them since I generally have to bring specialist A's report to specialist B who wants specialist R to see it too), but my god. I had to write out every diagnosis I have that could influence my ability as a valuable employee, every doctor I see regularly (over 15), what medications I take, how many ER visits I've had, how tall i am, how much i weigh, what every job I've had over the past 15 years has paid, what my work has entailed, how educated I am, if i ever worked in coal mines or for the rail road, what sort of skill set I have, am I computer literate, what my pension is, all this probing random personal information. Obviously they need to know it. It almost seems like they are asking "Did you really make an effort when you did have a job/Do you have an aversion to working hard". Again, understandable but insulting. I hate not working, I hate eating away at my savings, I hate hoping every day that my property will sell so I wont have to be a leech, I hate selling stuff on ebay so I have my own money...it's all so frustrating. I knew someone once who really seemed attached to the idea of being a "disabled housewife" and would tell people right off the bat that was who she was (even though, to be a catty fuck for a moment, technically she isn't as she hasn't been granted disability. i think that's a glaring technicality, but maybe i'm being an jerk), so it was almost like a title or an essence...and man, I cannot understand it at all. I don't want to be disabled or differently abled or sickly and i don't want to be a housewife (unless we suddenly had a litter of kids or something, then i'd probably want to stay home)

I'm also going to need to get a bone marrow biopsy, probably sooner than we'd anticipated, or sooner than we'd have liked to get it done, since apparently the folks at social security are bastards if you don't have one done. This is really up for debate, and I'm going to see how/why/if my initial claim is rejected, and on what grounds before I make a concrete decision on that. I fit the criteria for systemic mastocytosis disease (do not even get me started on the fucking ridiculous fight I had with someone on a major masto list about that this week. some woman all but invalidated everything i'd been through, including my doctor's diagnosis, because as far as she was concerned I didn't live up to her misinterpretation of the WHO criteria for diagnosis. so fucking insulting) I have a friend who has a lawyer for a parent, and has offered said parent's advice or counsel to me if needed. i hope it doesn't go that far.

It's funny, you know, there is this voice in my head screaming I AM NOT SICK, DON'T BE SICK, STOP BEING SICK, DON'T TREAT ME LIKE I AM whenever I deal with every overly compassionate doctor or lab tech, but now I have to start saying the opposite outloud to the government, and that is really tough. it's a label I don't want.

*I will still do great things, or at least good things, my timeline just got shifted around a bit. But there will still be England and GREs and all that. I swear.

My spots

2008-02-12T23:45:00.000-08:00

Since I've been bitching about that article and the absolutely ridiculous statement that urticaria pigmentosa may turn into cancer, I figured I may as well write about my own a little urticaria pigmentosas.

Today I went to see my doctor, and they had an intern in, as well as a fellow. They were both very excited to see an ISM patient, as even though my doctor sees a lot, we all have different stories, different reactions, different presentations. So we went over my medical history and I stressed to both of them how painful and grueling the whole process of getting diagnosed was, and what a fluke it was for the doctor who picked it up. I stressed that patients who suddenly come down with massive anxiety disorders with no exogenous stimulus should be looked at more closely.

I never wrote about what happened to me the week in which I was diagnosed because it is incredibly painful to relive, but it included being told I had a severe anxiety disorder, temporal lobe epilepsy, a noro-virus coupled with anxiety disorder and temporal lobe epilepsy, some other form of epilepsy, ms, potential hypochondria before finally it was decided I needed to be locked in a psych evaluation room for 12 hours under sedation because they could not keep my tachycardia under control and were convinced it was anxiety even though I was vomiting blood (which would later be attributed to the stomach damage I incurred from all the histamines that were flooding my body). There's a lot more to it, but I really don't want to get into details. It was horrible, honestly one of the worst experiences of my life. I am sure that many of you reading this who have mastocytosis can relate. The baffled doctors, the unclear medical tests, being told it is psychological when blood test after blood test comes out skewed. It's a story that many of us can tell sadly.

A few days later I noticed really odd mottling across the skin of my stomach so I made an appointment to see a dermatologist. While examining the mottled skin on my stomach, he noted that I had a lot of freckles on my back and torso. I told him that yeah, they'd been popping up over the past few years, that prior to that my skin was relatively flawless, but I'd had one biopsied to make sure it wasn't cancer, and it wasn't, and that i wasn't thrilled with how they looked cosmetically but I really didn't care. He scratched one, waited a moment, and then told me about mastocytosis. The only reason he was so well versed in it is because he works shifts at Children's Hospital, and this disease is more common in children. He immediately drew a ton of blood, did a 24 hour urine histamine, referred me to my specialist, and the rest, as they say, is history.

But, I figure I may as well show you what I've been talking about. This is a photo of my back. None of the freckles are freckles. They are all clusters of mast cells that show up in a cutaneous manifestation. One of the ones on the right had been intentionally irritated so as to show Darier's sign. In other words, it released a ton of histamines into my system. However, since I'm on so many meds, my reaction is pretty localized. I won't lie, I feel like hell after they do it, but I'm glad to suffer it to teach another doctor about a disease so infrequently seen.

So this is it, the real visible physical manifestation that I am not well. It's honestly hard for me to post this, because while I know it's not a real deformity, and I'm currently getting off pretty easy compared to many people with mastocytosis or urticaria pigmentosa, it's hard for me to look at, or show off, because it looks so unlike me. A few years ago the skin on my body was spotless, and now i'm turning into a leopard. but i guess that's a pretty good animal for the first thing to pop into mind, so maybe i can pretend i have that strength as well.

(for the record, I adjusted the contrast on this a bit because the room was very bright at the photo came out a bit washed out. This is also a few minutes after the Darier's sign had been activated and was starting to calm down)

I went out to eat again

2008-02-11T23:36:00.001-08:00

My friend Kelsey is leaving our merry shores soon to go to Korea...she mentioned having a dinner at the Eastern Standard, and I asked if I could tag along as I hadn't had a chance to see her while she'd been in Boston this time around. I was nervous about going out to dinner, but I also have to start pushing myself more. We all ended up going to the Eastern Standard, and my god it was so worth it. Eating out is still one of my biggest fears since my stomach was pretty much destroyed at the height of my mastocytosis and it's still healing...so foods are still my biggest triggers.

First major props go to my dear friend Peter as he actually went to the restaurant at lunch to go over my allergies with the chef and the manager, as they both wanted to discuss it with him (he works near there, but regardless that really was going above and beyond as far as I'm concerned) He brought a copy of the low histamine checklist and went over it with the manager and the sous chef. The fact that they'd even take the time out of their prep time for your average joe customer is just phenomenal as far as I'm concerned.

When I got there this evening, they were fully aware of my condition and my triggers, had kept a copy of the list which they kept in the kitchen, and were so well versed when I ordered something that had something I was allergic to in it that isn't a common ingredient (I ordered mashed potatoes, and they had buttermilk in them) the waiter came out seconds later to discuss it with me. Seriously, they took my health and allergies that seriously that they kept paperwork on it on hand to make sure they wouldn't accidentally give me food with an allergen in it. The waiter even asked me if I'd mind explaining my condition with him, since it seemed really interesting since it went outside the realm of normal food allergies.

Second, they custom made me a meal that wasn't on the menu so that I'd have no risk of cross contamination or anything. It was a simple meal (chicken breast with rosemary and olive oil with fries seasoned with sea salt) but it was delicious. The meat was tender and seasoned perfectly.

For dessert I had a coconut creme brulee which is one of the best I've ever had, maybe slightly edged out by one I had in Paris. The top was caramelized perfectly, not too bitter, not too sweet, and the coconut was a fantastic touch.

When they found out that we were sending a friend off to Korea, our waiter took a picture of our table together, which I thought was very sweet. I do wish I still drank as their drink list was astounding. Classic cocktails, absinthe cocktails, just great.

Seriously, everything there was fantastic, the atmosphere, the service, the quality of the food...just awesome. I am so glad that I went out on a limb and had a meal there. It was so totally worth it, something obviously magnified by the company I was keeping during the evening.

Honestly I am so impressed with my experience that I am going to write them a thank you letter. Having a chronic illness, especially one that effect what I can eat sort of makes me feel like a leper when it comes to restaurants, there are so many questions, so many precautions, but as our waiter said to me after I apologized for the 15th question about ingredients in something, "we're here to make sure you have an enjoyable and fun experience and want to do everything we can to ensure that".

And that's really damn awesome.

Mastocytosis in the News

2008-02-08T11:12:00.000-08:00

http://www.pittsburghlive.com/x/valleyindependent/teenscene/s_551395.html

I really feel for this kid and his family, but I feel as though the only research the author of this article did was through the eyes of hysterical and scared parents as opposed to say, medical research. It's really heartbreaking to read what crap the kid eats (most likely due to being a picky 5 year old vs being a masto patient, esp considering he still has painful GI issues even though he's on medication) and the sacrifices the siblings have had to make.

Don't get me wrong, every case of masto is different, but this just seems to be a gross mis characterization of the illness, mostly due to what appears to be an utter lack of research on the authors part.

2008-01-15T21:32:00.000-08:00

Sometimes it is hard reading the masto list. I am guessing the people in the most pain are the ones who are the most vocal, but sometimes i feel like I'm faking it. Sure sometimes I get flushy, my throat bothers me, I get weird blood pressure fluctuations, but in general things aren't so bad. i don't shock, I've never shocked, never needed my pen, needed my inhaler once. I take a ridiculously low dose of meds (the only one I'm maxed out on is gastrocrom) so sometimes I feel like I'm faking it. The fatigue, osteoporosis, bone pain and body covered with lesions are obvious proof (aside from my tryptase levels and urine histamine levels), but sometimes i feel like I don't get the whole thing. So many people are so angry, so resigned, so bitter...sometimes I don't know if my input is good or not. I mean, I'm not on the same level as many of those people. I'm not as healthy as a "normal" person, but I'm not as in bad a shape as many of my cohorts.

One weird thing is that some people are jonesing for the diagnosis. They haven't gotten it yet, they've had doctors tell them they don't have it, but they need it. i don't get that. I mean, having an answer to all the weird blood tests, the fatigue, the pain, it's great, but man, I'd trade it all in a second for a day of normalcy again.

I've decided to start crafting to kill time until I acclimate to my meds and can work again. Obviously I'm coating myself in protective gear, such as a hardcore mask, non latex gloves, and moving forward I'm going to wear goggles.

I'm being a little selfish!

2008-01-12T11:29:00.000-08:00

I've had a couple people mention "hey your birthday is coming up, and it's a big one what would you want?", which is neat and appreciated since i guess 30 is sorta a big one, and honestly, the fact that I didn't go insane during 29 is also pretty big (to me). To that I guess I can respond with 5 things

1)a friend of mine was in a pretty terrible accident earlier in the winter and is going to be needing some help. their wishlist is pretty fulfilled, but like I said when this happened, donating blood is always awesome and something I wish I could do, but really shouldn't. Some doctors say it is ok, some say that it isn't, and the lack of clarity makes me feel uncomfortable with any risks the recipient might have as a result. This i something that will haunt me until I get a firm answer since I have pretty rare blood (I don't carry CMV antibodies which most of the population has, as somehow in my 30 years I've managed to avoid every single strain of any herpes type virus, which sadly makes my blood very valuable to hiv infected patients and premature babies needing tranfusions) I really can't afford to donate more to their cause than I already have, what with the not working and my own rather large medical bills (insurance doesn't cover all my treatments, and we have to go through this long and tedious reimbursement process). So yeah, that's the big one.

2) the always my exciting amazon wishlist

3) mix cds. i love music, i love my friends, the two combined seem to make a lot of sense, especially as I really can't afford to go out and buy music with the same voracity that I used to.

4) as always, donations to the mastocytosis society are always pretty keen. Everyone has already been incredible in this regard, but the more money raised, the more resources available for people suffering this disease. I'm lucky in that I live in an area where there are a lot of specialists and resources available to me, other people, not so much.

5) Donations to the American Heart Association. My dad suffers from heart failure, mast cells play a large role in heart failure. Totally selfish, but whatever. It's my birthday, I can be selfish.

ow ow ow ow

2008-01-10T15:41:00.000-08:00

I think I have a tiny cavity in one of my teeth. The timing is excellent because I'm going to get my teeth cleaned on Monday, but I'm nervous about the cavity issue. I've spoken to my Dr. as well as members of the TMS about what types of anesthesias work best and my dentist, bless him, did a ton of research on mastocytosis once I became his patient. Chances of me having the cavity work done on Monday are pretty slim, but I'm still not psyched about it. A few months ago i was supposed to have a lumbar puncture done, and during the numbing process, I reacted pretty harshly to the lidocaine, though we don't know if it had epi in it, or if the neurologist knicked a vein or what. I'm none too thrilled about this. Part of me is concerned the gastrocrom is potentially causing some of these issues, since I never really had the amount of mouth pain that I have now before I started taking the stuff. I've started watering it down more to see if that helps.

In other news, I'm going to get my hair done in about half an hour. My birthday is in 13 days, and I feel like looking all purty for it. 29 was the most wretched year of my life in a lot of ways, and I want to start 30 off right. Or at least aesthetically pleasing I suppose.

Not too much else to report. I've been trying to do my self hypnosis stuff at home, but failing miserably since I get fidgety or decide there is something I MUST GO TO right that second, or I fall asleep.

One thing that has made me happy about being really open and upfront about my illness and trying to maintain a somewhat widespread or loud internet presence, is that in one of my yelp reviews, I mentioned having ISM and about how much I loved my hospital and my doctor and how without them I'd be lost. WELL, apparently there was some woman using yelp to find a better doctor as she'd just been diagnosed with ISM and given little information, so she contacted me to find out about my dr. I gave her all the information I could, as well as my email address in case she wanted to chat, but I haven't heard back from her. Hopefully everything has or is working out ok for her, but at the very least I'm glad to have potentially helped someone out a little bit.

After I get my hair done, my husband is going to look at a friend's home gym to see if it's small enough to fit into my office (apparently it's very compact as it works more based off resistance than huge weights) and I'm hopefully going to play with all my beads and trinkets.

Anonymous Comments are on

2008-01-09T22:15:00.000-08:00

Hey all (this is mainly for anyone who may have meandered over here from the masto-med mailing list) I didn't realize that I had had my comment settings set so that only people with blogs could comment. That appears to be Blogger's default and is kinda rude. So I've reset it so that anyone can comment on anything they want.

So comment away if you're out there ;)

getting cocky

2008-01-08T20:31:00.000-08:00

So, hot on the wheels of my successful djing experience last night, I decided it was time to tackle something that I have been living in fear of for months.

Two of my worse shocking experiences were in restaurants, back when I didn't know what was wrong with me (and the frontrunners were either temporal lobe epilepsy or panic attacks. however a clear eeg and my general lack of anxiety over restaurants pretty much nullified those options)

So, this evening I went out with two friends to check out a restaurant in the new (or redone) mall that is somewhat near our apartment, called the Metropolitan Bar and Grill (at the Natick Collection)

Well, firstoff, they were totally accommodating about my food allergy requests and concerns, and while I did opt for a fairly bland turkey burger with roasted garlic and caramelized onions.

So, it wasn't the most daring of steps to take on some levels, but on other levels, I DID IT. I went out to a restaurant, I ate, and I didn't get sick and I didn't get myself sick with anxiety either. So I am pretty psyched. Two big steps in as many days, I'm thrilled.

After the mall, I went to Michael's (the craft store) to pick up some resin and some beads, as I'm going to attempt to make some crafty things and setup an Etsy store in the next few months. While I'm able to get stuff done like spend a few hours in a club, or eat a sandwich without passing out, I'm still nervous about work and my exhaustion levels have been huge. I'm not sure if it is the drugs, the mastocytosis or what.

In other news, I turn 30 in a couple weeks. Not quite where I'd like to be in terms of life accomplishments (as I was hoping to either have moved up in work or been working on grad school stuff by now) but I'll take what I can get. Sure being psyched about eating dinner isn't as prestigeous as getting a kickass score in the GRE, but it's one day at a time.

One thing I'm bummed about though, is that I've gone 3 days without walking. Mostly due to circumstance, but I'm still annoyed. I was walking about 3 miles a day for the past week and I don't want to lose that momentum.

like riding a bike

2008-01-07T23:47:00.000-08:00

I have a few hobbies I really enjoy; videogames, reading, knitting, book binding, all things that can be fairly solitary and can really be done within the confines of my house (which is of course safe and masto proof) but one thing I really enjoyed before I got sick was djing, something I promptly stopped after my diagnosis. There were too many variables; flashing lights, people wearing perfume, standing on my feet for a couple hours at a shot (my osteoporosis is worst in my back and hips so that can get uncomfortable after a while). So many things that were once normal seemed ominous, so I retreated back into my insular world for a while to begin to gauge my triggers to see what was risky and what wasn't.

A month or so ago, a local promoter asked me if I wanted to spin at the club I used to have a residency at. I was equal parts elated and terrified. What if things went wrong? What if I shocked? What if I got so nervous I made myself sick?

Suffice to say, none of those things happened this evening. I dj'd for about 90 minutes and it was fantastic. I don't know if I lost myself in the music, in watching the appreciative crowd, but for those 90 minutes, the mast cells, the medications, the fear, it all just slipped away and it was fabulous.

exhaustion continues

2008-01-06T11:01:00.000-08:00

I have good days and bad days (though every day includes at least 60+ minutes of rapid walking, I may start tracking my exercise here), though almost always tired days. Every medication I am on has some sedating properties, and when you add them all together, I'm one sleepy B. I think it's exacerbated by pms (which I don't get, I just get tired, possibly pre menstrual anemia)

I'm on a few mailing lists for people who suffer masto, and I have been seeing posts of people trying to unload one of the medications I am on. Of course they are being smart (and ethical!) by trying to find people either without insurance or whose insurance doesn't cover it. My husband and I nearly ran into that, but thankfully we have one of the branches of BCBS that covers it. His company was recently bought out by a larger company, and while our benefits will remain the same for the next year, I am concerned what next year will bring. A new plan? One that doesn't want me because I would be rolling over with a preexisting condition? I believe there is a law that forbids that as long as the person has remained insured, but that could change.

A few weeks ago I watched Sicko by Michael Moore, and was really horrified at how much more convoluted and fucked up the healthcare system was (and I already don't hold it in high regard since it took around 5+ years to get my diagnoses, during which I had doctors tell me, "there is no way you could be so sick and yet do so much"-in reference to my having a job, to ER nurses implying I was malingering) It just freaks me out and makes me sad to recognize how "lucky" I am, living in one of the greater medical cities in the world, with a husband whose company happens to have really good benefits. It puts a dent in our bills, which are already really steep.

Exercise

2008-01-04T22:01:00.000-08:00

One thing that has been frustrating for me in life post-diagnosis is exercise. While I wouldn't say I was ever the most active person in the world, I saw a trainer, went to pilates class, ran 5x a week, just general exercise because I was convinced that my fatigue and general feelings of unwellness could only be helped by an immune system bolstered by exercise.

Before I got my diagnosis, I got very very ill, which made exercise next to impossible. I also went through a severe period of malabsorption, so I ended up losing around 40 lbs very quickly. That was unpleasant for a whole host of reasons, ranging from the damage it did to my stomach and bones, vitamin deficiencies, to just stupid things like how much older I look now, how I had to buy new clothes.

But I digress, that isn't the point of this. One of my current concerns is getting back into exercising while not running the risk of exercise anaphylactic shock, something I didn't even know existed until I had been diagnosed. But it's a possible risk (For those of us with masto it's a higher risk than the general population, and doesn't have include exercise after eating an allergen). So, once I got healthy enough to start exercising, I had to make a few decisions, the main one being, "Do I keep my gym membership?" Aside from the whole potential for shocking due to exercise, staph infections are picked up in a few environments, being prisons, schools, and now gyms thanks to the mega antibacterial stuff they bathe the equipment in. Since Vancomycin is one of the drugs my doctor strongly suggests not taking (and is one of the ones recommended for staph) I wasn't sure I was healthy enough to take that risk. Plus, perfumes, aforementioned equipment cleaning chemicals, were all things that left me hesitant, as well as the fact I knew I'd be an idiot and start pushing myself harder that necessary right from the get go.

I wasn't even sure if I was ready to work out or exercise, as I was still wallowing in the pit of feeling sorry for myself over being diagnosed with a rare, incurable disease. However, I'm not generally one to take adversity laying down, and every doctor had strongly recommended some exercise to help build bone mass that had been lost in my spine and hips as a result of the osteoporosis.

So, I canceled my gym membership with the intent of waiting a few months until I could buy a treadmill, assuming that one less monthly expenditure would make up for one large purchase. My parents caught wind of this, and aware of my current inability to work and my astronomical medical bills, ended up buying me a nice one for Christmas.

I love it, but now it's all about pushing limits. Every day I work out longer, faster, and track my progress and any symptoms I experience while exercising. I won't lie, it feels somewhat demeaning that I used to be able to run 3+ miles in half an hour and now I'm doing about 3 miles in an hour, but for now it's all about building bone density and tolerance. I can't let my arrogance get in the way of temperance, which is difficult. I've been lucky that I've get to go into full blown shock, and don't feel like having it happen out of my refusal to admit that the rules are somewhat different now. But it's a good thing to be doing, even if it is slightly boring. Soon I am going to have a friend teach me some high weight low rep free weights stuff which will burn fat and build muscle, which can only help my body maintain itself.

I'm not sure what the point of this entry is other than stating that it's easy to feel like giving up is the only option, that pushing yourself is scary and not worth it, but I just refuse to see that as the case. I'm not that sick right now (and hopefully never will be)so I figure I should do the best that I can to maintain what health I have control over. That's why I'm doing my boring powerwalking, that's why I'm seeing the hypnotherapist to give me a kickstart with the quitting smoking thing, and a psychiatrist to help me with the anxiety (which I will get into later.I personally cannot espouse the value of therapy enough)

If anyone in the Masto community is reading this, I'd love feedback in regards to exercise; what you do, what you avoid, what you've found to be a trigger..

tired

2008-01-04T10:06:00.000-08:00

It's 1pm EST and I'm exhausted today. I don't know if it is my meds, the weather, a cold, or the result of being under or overslept. Regardless, it's annoying. I want nothing more than to get back under the covers and sleep for a few hours more.

My best friend came back from Chicago last night. Another one of his friend's girlfriend was recently diagnosed with having a benign tumor near her Thalamus...we were discussing the implications of this (it being inoperable, the area that is affected controls moods, energy, etc) and my friend made the comment that he wondered what his friend must be thinking, would he want to be in a relationship with her forever knowing she would most likely not get better (i guess surgery is very risky and not an option at this point) and would most likely get worse (intracranial pressure is a bitch I suppose) and I just sort of stared at him for a moment, thinking, "wow I can't believe you just said that to me" but instead I told him he should go ask my partner how they feel. Kinda bitchy, but whatever. I have on occasion had people complain to me about how daunting or terrible some chronic condition (rsi, fms) seems, and I never know how to reply. While I'm well aware of the effects that this will have on my body, the last thing I want it to do is sap away my empathy...The point is to eventually move this into the background so that it's not so...present.

In other news, there is this site called Yelp.com, where you can review local business. Since I'm not currently working, I've had copious free time to review a ton of place, as can be seen here. So I now have "elite" status, which means I get invited to all sorts of bar and restaurant events. Which should be interesting since my diet is still pretty restricted. I feel that until I get a better grasp on things I want to continue with the low histamine diet. It is far from the most interesting thing in the world, but at the very least it seems like a good elimination diet. I really miss cheese the most.

I need to shower soon. At 3, I'm going to see a hypnotherapist to see if it can help with the smoking cessation. Since mast cells have been linked to heart disease, and my dad suffers heart disease, and smoking causes heart disease, it would seem that the less smoking I do, the better off my heart will be.

So that's that. The last session was really interesting, I am hoping this one will be too. It is genuinely amazing the control the mind can have over the body. I know for myself, when I end up in the hospital with tachycardia (I dehydrate very easily which sends my bpm to around 150) if I meditate I can bring it down (obviously fluids and meds help too, but I'm usually hooked up to all the machines before meds are pushed).

Welcome, welcome.

2008-01-03T15:48:00.000-08:00

So, this is a new year, and I figured a new blog might do me some good.

In mid-2007 I was diagnosed with Systemic Mastocytosis. I originally thought it was the end of the world...It's a very rare disease, there is no cure, and the treatments and courses the disease takes are varied and frustrating. Within a matter of weeks I went from being a happy but oddly unhealthy young woman to someone who could apply for Social Security, had a massive regimen of medications to take, a barrage of specialists to see, and a fairly restricted lifestyle.

To say this was jarring would be a massive understatement. There is so much weight attached to being unwell, to having a chronic illness. People are scared for you, hell they are probably scared of you, I mean, who wants to invite a friend over for dinner and run the risk they go into anaphylactic shock? The transition has been difficult, I won't like, however it is something that I want to document both for myself and for other people.

I'm relatively lucky in that the type of mastocytosis I have is currently considered indolent. I've had 2 tests done (a 24 hour urine histamine and a blood tryptase level) and am currently waiting to hear back from Dana Farber as to when we are going to schedule my bone marrow biopsy. The bone marrow biopsy is more for research and social security as chances of it influencing my current treatment regimen are highly unlikely.

I'm also lucky that I live in Boston (or rather just outside Boston) and have access to three doctors who research and treat this disease. They've all been lifesavers both literally and figuratively, as they've been patient, caring, and engaged in my healthcare.

Right now, I'm still pretty healthy and my drug regimen is pretty light. I take the following medications:

Ketotifen 1.5mg/day (this is an antihistamine I have to buy from Canada)
Gastrocrom 800mg/day (this is a mast cell stabilizer)
Zantac 150mg/day (this is an h3 blocker.I should be taking more, but I usually forget honestly)
Klonopin 1mg/day (since all of this has gone down I've started to suffer from anxiety, which can set off my attacks, so I take a low dose of this to stave it off)
Vitamin D 10,000unit/2x a month (I have bone involvement with my disease - Osteoporosis to be exact) and am also vitamin D deficient. This is working to up my levels again

I also have an array of emergency meds, which include Epi Pens, Epi Inhalers, Albuterol Inhalers, Benadyl in liquid, pill, and dissolving strip form, Atarax, Prednisone, and Singular. The latter 3 are more for premedication use than anything, as I need to take them before having tests done involving contrast or local anesthesia.

So, that is where things currently stand. Right now my main goals for the new year are to
a) Quit smoking (smoke aggravates mast cells)
b) Get on a slightly better med regimen
c) Raise awareness of this disease and raise money for the Mastocytosis Society (I have had incredibly generous friends who have donated somewhere in the ballpark of $2k since I got sick)
d) Give yet another name and face to people suffering from chronic illness. We can be spunky, fun, happy, functional people. We can be mothers, daughters, sons, fathers, students, lawyers, anarchists, researchers...anyone. I kind of want to dispel the whole disabled, miserable, weak individual stigma that is so readily attached to people suffering chronic disease. Hopefully that blog will help do that, instead of enforce it. Time will tell.

One other project I am doing is to take a picture of myself each day, which can be viewed here. Again, that is working to both give myself and this illness a face, and to chart any effects it may have on my appearance over the next year.

So that is it, your basic introduction. I hope this blog can be funny, insightful, informative, candid, and a cathartic experience both for me and whoever reads it.