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?

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

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

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

#$@$@

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

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

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

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

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

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

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

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

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

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

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

i hate this article and it warrants repeating

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.

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

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

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

Health

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

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

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

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

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

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

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

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

Remember to Vote

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.