oh hey

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

links

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

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

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



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

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

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

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

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

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

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

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

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

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

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

surived!

I survived the lithotripsy.

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

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

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

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

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

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

a request

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

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

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

disability.

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

on comments

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

it has been a while

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

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

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

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

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

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

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