2/9/09

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

meds help

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

UGH!

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

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

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

As it stands right now I'm taking:

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


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

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

Anyway, any and all help would be MUCH appreciated.

wow, just wow

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

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

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

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

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

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

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

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

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

grrrrrr

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

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

so that is where things stand for me.

here we go again

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

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

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

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

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

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

ow ow ow ow

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

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

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

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

some progress

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!