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.
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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.

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?

this is something we can all relate to, ill or not.

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 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.

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.
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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

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.