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.
Friday, December 19, 2008
Tuesday, December 2, 2008
grrrrrr
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.
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.
Sunday, November 30, 2008
here we go again
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.
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.
Friday, November 28, 2008
ow ow ow ow
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.
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.
Wednesday, November 26, 2008
some progress
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!
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!
Monday, November 24, 2008
A few things
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.
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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.
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.
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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.
Wednesday, November 19, 2008
Calcium
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?
Friday, November 14, 2008
pffft.
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.
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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)
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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.
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.
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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)
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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.
Wednesday, November 12, 2008
#$@$@
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.
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.
Sunday, November 9, 2008
i hate this article and it warrants repeating
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.
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.
Thursday, November 6, 2008
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...
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...
Tuesday, November 4, 2008
Health
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.
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.
Monday, November 3, 2008
Remember to Vote
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.
Tuesday, October 28, 2008
bladders and brains
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 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.
Wednesday, October 22, 2008
i hate thinking of pithy titles
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.
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.
Monday, October 20, 2008
Gah
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.
---------------------------------------------------------
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.
Monday, October 13, 2008
$@#%
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.
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.
Monday, September 15, 2008
not a pleasant day at all
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.
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.
Sunday, September 14, 2008
general update and asprin?
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.
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.
Sunday, August 24, 2008
#@#@#$
So I am on what I am guessing is the largest email list that caters to people suffering from Mast Cell Disorders.
Depending on who you talk to, depending on what literature your read, there are a myriad of disorders, multiple diagnostic criteria, and multiple treatments.
The list for those who don't know (but then you probably aren't reading this)
* Systemic Mastocytosis (with or without cutaneous manifestations such as Urticaria Pigmentosa)
o Aggressive Mastocytosis
o Indolent Mastocytosis
o Mastocytosis with associated Hematologic Disorder
o Mast Cell Leukemia
* Cutaneous Mastocytosis
o Urticaria Pigmentosa (UP)
o Telengiecstasia Macularis Eruptive Perstans (TMEP)
* Mast Cell Activation Syndrome/ Disorder
* Idiopathic Anaphylaxis
(I'm leaving out the pediatric illnesses since children probably aren't reading my blog, and little of what I post here is relevant to the parents of children suffering from pediatric mast cell diseases)
So, we have all these categories and sub categories and suddenly it's become some sort of (and pardon my vulgarity here) dick waving competition to see who is suffering the most or whose diagnosis is the most valid. It's ridiculous. I personally got attacked by at least one member when I mentioned my status (ISM) and then mentioned I had not had a bone marrow biopsy. My doctor (Dr. Castells) is one of the leading researchers and physicians in the country for this disease, and she felt that a) all my blood, urine, and skin biopsies were proof positive and b) I was not physically stable enough to undergo a test that would not change my treatment protocol. In addition I went and got second and third opinions from 2 other mast cell disease specialists in the area, and also had Dr. Castell's mentor review my files. Every single one said the same thing, Indolent Systemic Mastocytosis, and every one agreed that the BMB seemed unnecessary at this time. (for the record I also got the ISM diagnosis from a dermatologist and the mast cell disease specialist from a different hospital before being referred to Dr. Castells)
All of this was not good enough for this woman, who seemed to imply I was malingering or that my diagnosis was not valid enough for her. What the fuck? Who is she (or anyone else) to judge what I've been told by leaders in their fields? Does my non BMB followed up diagnosis somehow dilute the mast cell suffering gene pool? Is our mailing list becoming some sort of fucked up eugenics in reverse?
Now there are people stating they are not welcome to support groups because they have a variant some people don't believe in, or having their diagnosis disregarded by other (potentially higher ranking) list members.
This all seems so absolutely goddamned stupid to me. It would be one thing is someone showed up on the mailing list saying, "man I have wicked hayfever, I can totally relate to what you guys are going through" or "man I stubbed my toe and chipped a nail, I totally know what it feels like to have osteoporosis at 30 to such an extent that when you stubbed your toe you broke it in half"
It's just so incredibly frustrating to see people denigrating each other's experiences with this disease because they do not match their own personal definition. We're all suffering and it's no one's job to try to corner the market on it (unless you have mast cell leukemia, in which case my heart goes out to you).
This could be a lot more eloquent and well thought out, but it just bugs me to see this perceived hierarchy of validation of suffering take place. It also bothers me to see this working to splinter what I find (or have found since lately it's been pissing me off) to be a very valuable resource in terms of dealing with this disease.
Depending on who you talk to, depending on what literature your read, there are a myriad of disorders, multiple diagnostic criteria, and multiple treatments.
The list for those who don't know (but then you probably aren't reading this)
* Systemic Mastocytosis (with or without cutaneous manifestations such as Urticaria Pigmentosa)
o Aggressive Mastocytosis
o Indolent Mastocytosis
o Mastocytosis with associated Hematologic Disorder
o Mast Cell Leukemia
* Cutaneous Mastocytosis
o Urticaria Pigmentosa (UP)
o Telengiecstasia Macularis Eruptive Perstans (TMEP)
* Mast Cell Activation Syndrome/ Disorder
* Idiopathic Anaphylaxis
(I'm leaving out the pediatric illnesses since children probably aren't reading my blog, and little of what I post here is relevant to the parents of children suffering from pediatric mast cell diseases)
So, we have all these categories and sub categories and suddenly it's become some sort of (and pardon my vulgarity here) dick waving competition to see who is suffering the most or whose diagnosis is the most valid. It's ridiculous. I personally got attacked by at least one member when I mentioned my status (ISM) and then mentioned I had not had a bone marrow biopsy. My doctor (Dr. Castells) is one of the leading researchers and physicians in the country for this disease, and she felt that a) all my blood, urine, and skin biopsies were proof positive and b) I was not physically stable enough to undergo a test that would not change my treatment protocol. In addition I went and got second and third opinions from 2 other mast cell disease specialists in the area, and also had Dr. Castell's mentor review my files. Every single one said the same thing, Indolent Systemic Mastocytosis, and every one agreed that the BMB seemed unnecessary at this time. (for the record I also got the ISM diagnosis from a dermatologist and the mast cell disease specialist from a different hospital before being referred to Dr. Castells)
All of this was not good enough for this woman, who seemed to imply I was malingering or that my diagnosis was not valid enough for her. What the fuck? Who is she (or anyone else) to judge what I've been told by leaders in their fields? Does my non BMB followed up diagnosis somehow dilute the mast cell suffering gene pool? Is our mailing list becoming some sort of fucked up eugenics in reverse?
Now there are people stating they are not welcome to support groups because they have a variant some people don't believe in, or having their diagnosis disregarded by other (potentially higher ranking) list members.
This all seems so absolutely goddamned stupid to me. It would be one thing is someone showed up on the mailing list saying, "man I have wicked hayfever, I can totally relate to what you guys are going through" or "man I stubbed my toe and chipped a nail, I totally know what it feels like to have osteoporosis at 30 to such an extent that when you stubbed your toe you broke it in half"
It's just so incredibly frustrating to see people denigrating each other's experiences with this disease because they do not match their own personal definition. We're all suffering and it's no one's job to try to corner the market on it (unless you have mast cell leukemia, in which case my heart goes out to you).
This could be a lot more eloquent and well thought out, but it just bugs me to see this perceived hierarchy of validation of suffering take place. It also bothers me to see this working to splinter what I find (or have found since lately it's been pissing me off) to be a very valuable resource in terms of dealing with this disease.
Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties
I sat down to read this book at 4am, and at 5:49 I have just finished it. I was afraid it was going to be either an overly saccharine chipper self help book rife with the "buck up little campers, we can overcome our various plights" attitude, or another "woe is me, the medical industry has failed me as badly as genetics have" (the only book I've ever read from a patient's perspective who suffered from Mastocytosis was very bitter in some ways. I have no doubt it was cathartic for the author, and in turn cathartic for many of the readers, but something about it sat wrong with me. I think I was looking for answers in it that weren't there. Another concern I had about this book (especially since the author is around my age and went to my college is that I'd think, "hell I could've written this if I'd felt so self indulgent", since so many memoirs lately read like they were written by 6th graders)
But instead I found a well written, well researched book with a myriad of strong (predominantly female, which for me was comforting, however I would've liked to see a bit more gender diversity both for male readers as well as to dispell the whole frail woman thing) voices covering the basics of life with a chronic and incurable illness.
However, what made this book different, tolerable, hell actually enjoyable was the strength in it. No blithe optimism that we're all gonna get cured next year or anything like that. Just a lot of strength, honesty, candor, situations I could relate to, and resources for myself and my husband.
The author and her comrades discuss their various illnesses with a calm acceptance and honesty I found really refreshing. These people seemed to accept and understand what chronic illness meant in terms of shaping their young lives in both the long and short term, and while they were not ok with it, they also didn't appear bitter. They seemed intent on living. It just aligned very strongly with things I've felt and the outlook I have.
I truly think that anyone with a chronic illness should read this book, and in turn I think their spouses should too (or at least the last few chapters that deal predominantly with relationship-centric stuff)
Here it is on Amazon
But instead I found a well written, well researched book with a myriad of strong (predominantly female, which for me was comforting, however I would've liked to see a bit more gender diversity both for male readers as well as to dispell the whole frail woman thing) voices covering the basics of life with a chronic and incurable illness.
However, what made this book different, tolerable, hell actually enjoyable was the strength in it. No blithe optimism that we're all gonna get cured next year or anything like that. Just a lot of strength, honesty, candor, situations I could relate to, and resources for myself and my husband.
The author and her comrades discuss their various illnesses with a calm acceptance and honesty I found really refreshing. These people seemed to accept and understand what chronic illness meant in terms of shaping their young lives in both the long and short term, and while they were not ok with it, they also didn't appear bitter. They seemed intent on living. It just aligned very strongly with things I've felt and the outlook I have.
I truly think that anyone with a chronic illness should read this book, and in turn I think their spouses should too (or at least the last few chapters that deal predominantly with relationship-centric stuff)
Here it is on Amazon
Tuesday, August 19, 2008
Vanishing Spots?
Over the past few days I've noticed that a few of my more prominent UP seem to have vanished. I don't know if this is the result of getting sun or something more nefarious going on. I have to admit I have not been feeling my best, but I think the insane New England weather is probably more to blame than the disappearance of a few spots.
When I had my tryptase done in May it was I think 2 points higher than it had been the previous year, and my urine histamine was -way- down. Due to these results, Dr. Castells felt that the chances of this turning aggressive were slim to none. I only bring that part up because I have read many conflicting things regarding spots and whether their presence is foreboding or positive.
I've got an appointment to see Dr. Castells on the 11th so I will obviously be going over this with her since it is very curious to say the least. I'm still new enough to masto that I have no idea if this is commonplace or not.
When I had my tryptase done in May it was I think 2 points higher than it had been the previous year, and my urine histamine was -way- down. Due to these results, Dr. Castells felt that the chances of this turning aggressive were slim to none. I only bring that part up because I have read many conflicting things regarding spots and whether their presence is foreboding or positive.
I've got an appointment to see Dr. Castells on the 11th so I will obviously be going over this with her since it is very curious to say the least. I'm still new enough to masto that I have no idea if this is commonplace or not.
Wednesday, August 13, 2008
reusable water bottles
I drink a lot of distilled water, and I tend to carry it around with me to. in an effort to lesson my ecological footprint, i'd like to get a reusable water bottle.
I've heard stories that some of the plastic ones have carcinogens in them (and i have enough to worry about thnx), the metal ones are very expensive (and for some reason metal kind of creeps me out)
So I was wondering if anyone here had an opinion? Brands, types of plastic to avoid?
I've heard stories that some of the plastic ones have carcinogens in them (and i have enough to worry about thnx), the metal ones are very expensive (and for some reason metal kind of creeps me out)
So I was wondering if anyone here had an opinion? Brands, types of plastic to avoid?
Monday, August 4, 2008
faith
So, I'm on this mailing list that deals with mastocytosis (which no doubt many of the readers of this blog are on too) Recently a conversation came up, and I feel I might've been a little trigger happy in trying to quell it, but it happened, and it kind of pisses me off.
Discussion went towards evolutionary theory of diseases, and it was mentioned that we are descended from apes. The minute I saw that I started to get anxious since I knew that some people with a creationist viewpoint would no doubt find offense to this.
It's interesting, I feel like under the Bush administration that the whole creationism/intelligent design/evolutionary theory discussion has taken on a much harsher tone than it had when I was younger. It seemed like there was a time when all of these theories could exist with far less acrimony than they do now, but maybe that was me. I don't see how my believing in evolution is personally offensive to someone who believes in creationism, and if the roles were reversed, I don't see it being much different. I respect people's beliefs to have faith in whatever they want to, but I also think that people should respect others beliefs not to have beliefs. If I were a hardline atheist, I wouldn't find someone's belief in god offensive. What bothers me is that the reverse rarely seems true. Instead of having an intelligent or level headed discussion it just seems to be "Fuck you you don't share my faith and therefore your perspective is invalid/uninformed/irrelevant/inferior and therefore unworthy of discussion." and if anything that seems entirely unchristian.
I was raised Catholic, however my faith took a great shaking over a few things. There was a situation involving me that was handled very poorly by my church, and later on we had our own sex abuse scandal that came years before the one that rocked the Boston Archdiocese a few years ago. These events didn't necessarily shake my belief in spirituality, but they absolutely muddled my feelings regarding organized religion. whether you believe in god, nothing, the individual, a collective conscious...It is easy to find comfort in some greater design vs. arbitrary actions, but I also consider myself to be fairly science minded.
These feelings were further cemented when I traveled through Austria, and saw the Melk Abbey, a building of extreme wealth and prosperity, where only a few miles away was KZ Mauthausen, one of the more infamous death camps. Somehow the juxtaposition of the lush Abbey being so close to a place of such death and suffering made me uncomfortable. Walls gilded with gold flanked by walls lines with crematoriums. It was an experience that really changed my life, wandering around the empty camp on a slate gray afternoon when only a few hours I'd been in the presence of a Gutenberg bible and more gold and relics than one could imagine.
This isn't to say I want to entirely discount duality. I was in the room with my grandmother when she died. It was, sadly, a gruesome death. She'd been on a respirator for a month and the damage that does to an 82 year old's lungs is irreparable, especially when they have emphysema. We had gotten a phone call that afternoon from the hospital saying she was dying, that they felt her death was imminent. My father was out that afternoon picking up some FAFSA documentation for college for me, and we couldn't find him to drive us to the hospital. Under normal circumstances we would've made it there in under 10 minutes, this day it took about 90.
We got to her room, and one of her lungs had burst or something, and there was this dark, dead, thick blood streaming from her nose and her mouth. Even still, she was my grandmother and I loved her more than anything in the world and she was still beautiful to me. Seeing her in that shape was too much for me, and I went down. My mother, in one of the greatest examples of strength I've seen in a person was able to look past the blood, look past the suffering, walked up to her mother, held her hand, and told her she loved her. Her sentence was punctuated by the shrill constant beep of the heart monitor flat lining. It was as if she'd held on, far past the point that any human would want to, to say goodbye. One can easily argue it was coincidence, timing, whatever. All I know is that it genuinely felt like some part of her knew we weren't there, and wouldn't leave until we were.
They ushered us out of the room and cleaned her up, removed the tubes and let us back in to pay our final regards. I remember looking at her, cleaned and bathed, not covered in blood, her features smoothed out of the grimace of pain she'd previously held...and it meant nothing to me. It was a shell. It wasn't -her-. She was still warm, it had been only moments, but something irrevocable had changed in that instant. She went from being one of the most important people in my life to just...a husk. I wanted to find comfort in stroking her face or holding her hand, but I couldn't.
-----------------------------------------
I'm not sure what I'm trying to get at. I am jealous of people who have unwavering faith in a supreme being that looks out for us, that created us in some divine image. However, with all the pain and suffering and unfairness in this world, it's difficult to, before one even takes into account the vast amount of science based evidence to the contrary that is far more dense and difficult for one to sort out than the bible. I worry that many people who are sick are reaching out to faith for something to hold on to, almost like a bartering system. Like, if we're good enough, pious enough, devout enough, that maybe God will take mercy on us and fix whatever is wrong with us. I'm not saying that this is the case for the bulk of religious people, and I'm not trying to make a gross generalization, because I'm not, I am not even saying this applies to anyone I know, either from the list or in real life.
It just bothers me that we cannot simply take comfort in our own faith and simultaneously respect the faiths or beliefs of others without taking it as a personal affront. I have friends who are born again, uu's, hindu, pagan, catholic, and we are all able to coexist peacefully and happily and respectfully, something I feel was sorely lacking in the exchange on the list over the past few days, and that makes me sad.
I believe in the sun even when it is not shining.
I believe in love even when feeling it not.
I believe in God even when God is silent.
-this was found written on the wall of a basement in Köln Germany in the aftermath of WW2, most likely by holocaust survivors. I guess it is fitting in a way to what I'm saying, or not saying.
Discussion went towards evolutionary theory of diseases, and it was mentioned that we are descended from apes. The minute I saw that I started to get anxious since I knew that some people with a creationist viewpoint would no doubt find offense to this.
It's interesting, I feel like under the Bush administration that the whole creationism/intelligent design/evolutionary theory discussion has taken on a much harsher tone than it had when I was younger. It seemed like there was a time when all of these theories could exist with far less acrimony than they do now, but maybe that was me. I don't see how my believing in evolution is personally offensive to someone who believes in creationism, and if the roles were reversed, I don't see it being much different. I respect people's beliefs to have faith in whatever they want to, but I also think that people should respect others beliefs not to have beliefs. If I were a hardline atheist, I wouldn't find someone's belief in god offensive. What bothers me is that the reverse rarely seems true. Instead of having an intelligent or level headed discussion it just seems to be "Fuck you you don't share my faith and therefore your perspective is invalid/uninformed/irrelevant/inferior and therefore unworthy of discussion." and if anything that seems entirely unchristian.
I was raised Catholic, however my faith took a great shaking over a few things. There was a situation involving me that was handled very poorly by my church, and later on we had our own sex abuse scandal that came years before the one that rocked the Boston Archdiocese a few years ago. These events didn't necessarily shake my belief in spirituality, but they absolutely muddled my feelings regarding organized religion. whether you believe in god, nothing, the individual, a collective conscious...It is easy to find comfort in some greater design vs. arbitrary actions, but I also consider myself to be fairly science minded.
These feelings were further cemented when I traveled through Austria, and saw the Melk Abbey, a building of extreme wealth and prosperity, where only a few miles away was KZ Mauthausen, one of the more infamous death camps. Somehow the juxtaposition of the lush Abbey being so close to a place of such death and suffering made me uncomfortable. Walls gilded with gold flanked by walls lines with crematoriums. It was an experience that really changed my life, wandering around the empty camp on a slate gray afternoon when only a few hours I'd been in the presence of a Gutenberg bible and more gold and relics than one could imagine.
This isn't to say I want to entirely discount duality. I was in the room with my grandmother when she died. It was, sadly, a gruesome death. She'd been on a respirator for a month and the damage that does to an 82 year old's lungs is irreparable, especially when they have emphysema. We had gotten a phone call that afternoon from the hospital saying she was dying, that they felt her death was imminent. My father was out that afternoon picking up some FAFSA documentation for college for me, and we couldn't find him to drive us to the hospital. Under normal circumstances we would've made it there in under 10 minutes, this day it took about 90.
We got to her room, and one of her lungs had burst or something, and there was this dark, dead, thick blood streaming from her nose and her mouth. Even still, she was my grandmother and I loved her more than anything in the world and she was still beautiful to me. Seeing her in that shape was too much for me, and I went down. My mother, in one of the greatest examples of strength I've seen in a person was able to look past the blood, look past the suffering, walked up to her mother, held her hand, and told her she loved her. Her sentence was punctuated by the shrill constant beep of the heart monitor flat lining. It was as if she'd held on, far past the point that any human would want to, to say goodbye. One can easily argue it was coincidence, timing, whatever. All I know is that it genuinely felt like some part of her knew we weren't there, and wouldn't leave until we were.
They ushered us out of the room and cleaned her up, removed the tubes and let us back in to pay our final regards. I remember looking at her, cleaned and bathed, not covered in blood, her features smoothed out of the grimace of pain she'd previously held...and it meant nothing to me. It was a shell. It wasn't -her-. She was still warm, it had been only moments, but something irrevocable had changed in that instant. She went from being one of the most important people in my life to just...a husk. I wanted to find comfort in stroking her face or holding her hand, but I couldn't.
-----------------------------------------
I'm not sure what I'm trying to get at. I am jealous of people who have unwavering faith in a supreme being that looks out for us, that created us in some divine image. However, with all the pain and suffering and unfairness in this world, it's difficult to, before one even takes into account the vast amount of science based evidence to the contrary that is far more dense and difficult for one to sort out than the bible. I worry that many people who are sick are reaching out to faith for something to hold on to, almost like a bartering system. Like, if we're good enough, pious enough, devout enough, that maybe God will take mercy on us and fix whatever is wrong with us. I'm not saying that this is the case for the bulk of religious people, and I'm not trying to make a gross generalization, because I'm not, I am not even saying this applies to anyone I know, either from the list or in real life.
It just bothers me that we cannot simply take comfort in our own faith and simultaneously respect the faiths or beliefs of others without taking it as a personal affront. I have friends who are born again, uu's, hindu, pagan, catholic, and we are all able to coexist peacefully and happily and respectfully, something I feel was sorely lacking in the exchange on the list over the past few days, and that makes me sad.
I believe in the sun even when it is not shining.
I believe in love even when feeling it not.
I believe in God even when God is silent.
-this was found written on the wall of a basement in Köln Germany in the aftermath of WW2, most likely by holocaust survivors. I guess it is fitting in a way to what I'm saying, or not saying.
Monday, July 28, 2008
are you normal?
sorry for the obtuse "neds atomic dustbin" reference in the subject line. i am after all a child of the 90's. (i am also a child who doesn't feel like using the shift key tonight, even though it is my friend)
So I think I am over my irrational "bridget neither touched, tickled, stood within 5 feet, was bitten, scratched, or given dirty looks by a baby skunk" fear of rabies. (though i guess the next 60 days or so will tell ;p). I've also started using the shift key.
So anyway, two things happened that utilized speech that made me laugh a little, gallows humor mind you. I went to a jewelry making course this week, 5 days 10-5 pm with a lunch break. I generally showed up late and left early every day since the class wiped me out even though it was sitting around crocheting with wire. This was humbling since I was the youngest person in the class (and I believe the only one with osteoporosis, which is good for all the strong healthy women i took the class with who were at least 20+ years older than me, though not so great for me!)
1) I made this gorgeous necklace out of fine silver and these really stunning, rare freshwater pearls I had been holding on to. These suckers are lovely and deserved something far nicer than craft wire. One of my classmates suggested making a mate for it, but one where I would patina the metal (making it darker). I thought that would be a great idea, since it would add a lovely contrast. Turns out to oxidize the metal requires strong concentrations of chemicals, so I bowed out of that, explaining I have numerous sensitivities, I'd rather not put myself at risk and inconvenience the whole class if I went into shock, which lead to a discussion of my mast cell disease. The instructor, trying to be helpful said, "Well, don't feel bad about not being able to utilize said process, it makes normal people sick too." I shrugged my shoulders, said it wasn't a big deal, if I really wanted to do it, I had a friend with a bench I could give the piece to to have her do it...a few minutes later the instructor came up and apologized to me about her choice of wording...While I hadn't even noticed it, she'd called me abnormal. I know she was trying to make me feel better when she had said it, but I think apologizing for her choice of words made me feel more self conscious than being inadvertently referred to as abnormal.
2) I went on a huge rabies rampage today and called all my doctors, cdc, mass wildlife etc to have it reconfirmed to me that it would be nigh impossible that i would've gotten rabies from standing by while my husband was neither bitten, scratched or spit on by said skunk. I was talking about the immunization with my PCP, a wonderful woman who knows about masto, and she said something about how the rabies vaccine was not applicable for me, and anyway it wasn't something to be played around with because it was very hard for even normal people to tolerate. Again, I thought nothing of it since we were talking about immunizations and immunology and I have proven to not be normal in those fields, but again she apologized profusely.
--------------
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.
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.
Sunday, July 27, 2008
Rabies Risk?
I am sure this is more paranoia due to the fact that Mastocytosis causes problems with everything but I feel the need to post this here to see if anyone has any feedback:
Today Ethan and I were in the parking lots of a Michaels and we encountered a baby skunk. It was so tiny, maybe the size of Ethan's hand (not including the tail) and was stumbling around. It seemed lost, possibly injured, and very needy (it kept approaching the two of us as we stood in the rain trying to call various animal rescues/police departments to no avail). It was obviously a baby/young adolescent and should've still been with its mother, but it was alone.
The storm was getting worse, and we couldn't stand outside in the lightning storm waiting for the cops to possibly arrive to deal with the skunk. I ran into the store and they gave me a big box, which I handed off to Ethan. I didn't want to get too close to the skunk in case it sprayed (i have no idea if getting sprayed or being near a spray would send me into shock). I went back into the store, and ethan captured the skunk in the box (at no time did he touch it, at no time did it make any attempt to bite or scratch him) and carried it over to a wooded area far away from the parking lot. No physical contact was ever made with the skunk.
When we got home I developed a blinding headache (most likely the weather or my first ocular migraine) and decided to do some research on skunks. Of course it turns out that many of the behaviors our little friend was exhibiting could've been rabies (out in daylight, docile, unafraid of humans, weak) though they also may have been the result of being separating from its mother and not receiving adequate nutrition.
So, my chemistry/veterinary inclined friends, what, if any, risk does ethan have from interacting with the skunk as loosely as he did? again no physical contact was ever made between them, but i don't know if there is possible transmission through say, flea bites or something. and in kind, what is the possibly transmission rate (if any) to me or to him?
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?
Friday, July 25, 2008
Tuesday, May 13, 2008
Terrible Lawyer Experience
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 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.
Sunday, April 6, 2008
i make stuff
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.
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.
Wednesday, March 19, 2008
If you're reading this blog you've probably read this already too
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.
----------------------------------------------
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
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.
----------------------------------------------
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
Monday, March 10, 2008
ugh
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.
Wednesday, February 27, 2008
Kim
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.
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.
Thursday, February 21, 2008
humilty
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.
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.
Tuesday, February 12, 2008
My spots
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)
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)
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