Wednesday, February 27, 2008


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.

Thursday, February 21, 2008


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'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)

Monday, February 11, 2008

I went out to eat again

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

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

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

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

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

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

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

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

And that's really damn awesome.

Friday, February 8, 2008

Mastocytosis in the News

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

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