Thursday, January 3, 2008

Welcome, welcome.

So, this is a new year, and I figured a new blog might do me some good.

In mid-2007 I was diagnosed with Systemic Mastocytosis. I originally thought it was the end of the world...It's a very rare disease, there is no cure, and the treatments and courses the disease takes are varied and frustrating. Within a matter of weeks I went from being a happy but oddly unhealthy young woman to someone who could apply for Social Security, had a massive regimen of medications to take, a barrage of specialists to see, and a fairly restricted lifestyle.

To say this was jarring would be a massive understatement. There is so much weight attached to being unwell, to having a chronic illness. People are scared for you, hell they are probably scared of you, I mean, who wants to invite a friend over for dinner and run the risk they go into anaphylactic shock? The transition has been difficult, I won't like, however it is something that I want to document both for myself and for other people.

I'm relatively lucky in that the type of mastocytosis I have is currently considered indolent. I've had 2 tests done (a 24 hour urine histamine and a blood tryptase level) and am currently waiting to hear back from Dana Farber as to when we are going to schedule my bone marrow biopsy. The bone marrow biopsy is more for research and social security as chances of it influencing my current treatment regimen are highly unlikely.

I'm also lucky that I live in Boston (or rather just outside Boston) and have access to three doctors who research and treat this disease. They've all been lifesavers both literally and figuratively, as they've been patient, caring, and engaged in my healthcare.

Right now, I'm still pretty healthy and my drug regimen is pretty light. I take the following medications:

Ketotifen 1.5mg/day (this is an antihistamine I have to buy from Canada)
Gastrocrom 800mg/day (this is a mast cell stabilizer)
Zantac 150mg/day (this is an h3 blocker.I should be taking more, but I usually forget honestly)
Klonopin 1mg/day (since all of this has gone down I've started to suffer from anxiety, which can set off my attacks, so I take a low dose of this to stave it off)
Vitamin D 10,000unit/2x a month (I have bone involvement with my disease - Osteoporosis to be exact) and am also vitamin D deficient. This is working to up my levels again

I also have an array of emergency meds, which include Epi Pens, Epi Inhalers, Albuterol Inhalers, Benadyl in liquid, pill, and dissolving strip form, Atarax, Prednisone, and Singular. The latter 3 are more for premedication use than anything, as I need to take them before having tests done involving contrast or local anesthesia.

So, that is where things currently stand. Right now my main goals for the new year are to
a) Quit smoking (smoke aggravates mast cells)
b) Get on a slightly better med regimen
c) Raise awareness of this disease and raise money for the Mastocytosis Society (I have had incredibly generous friends who have donated somewhere in the ballpark of $2k since I got sick)
d) Give yet another name and face to people suffering from chronic illness. We can be spunky, fun, happy, functional people. We can be mothers, daughters, sons, fathers, students, lawyers, anarchists, researchers...anyone. I kind of want to dispel the whole disabled, miserable, weak individual stigma that is so readily attached to people suffering chronic disease. Hopefully that blog will help do that, instead of enforce it. Time will tell.

One other project I am doing is to take a picture of myself each day, which can be viewed here. Again, that is working to both give myself and this illness a face, and to chart any effects it may have on my appearance over the next year.

So that is it, your basic introduction. I hope this blog can be funny, insightful, informative, candid, and a cathartic experience both for me and whoever reads it.


Fiona said...

Bridget, THIS IS BRILLIANT!!! thanks so much for doing this.

My Allergist is sending me to an Hematologist to get the bone marrow thing to "Rule Out" Mastocytosis. I've got the funky urine/blood reading thing going on and have had waaaaaaaaaaaaay too many anaphylactic reactions (in the past 8 months) to be 'fluke' or my confirmed latex allergy.

Maybe I should try rubbing some of these new 'moles' I've got and see what they do???

Like you, I'm on this massive drug regime and...a low dose anti-depressant because of the anxiety thing. I haven't actually been told I have this 'illness'/change of lifestyle or living thing yet, but boy...our journey's thusfar sound VERY similar.

I take the 'glass full' approach to life as well, so I appreciate VERY MUCH your beautiful bravery & passion for joy!!!

Silly question: do you get puffy, itchy tongue??


Bridget said...

Fiona, I am so sorry it took me this long to reply as I only just saw your comment.

funny enough one of the first symptoms i had years ago was my tongue would get discolored, hurt, and sometimes swell. it was miserable.

I hope your tests went well.