Sometimes it is hard reading the masto list. I am guessing the people in the most pain are the ones who are the most vocal, but sometimes i feel like I'm faking it. Sure sometimes I get flushy, my throat bothers me, I get weird blood pressure fluctuations, but in general things aren't so bad. i don't shock, I've never shocked, never needed my pen, needed my inhaler once. I take a ridiculously low dose of meds (the only one I'm maxed out on is gastrocrom) so sometimes I feel like I'm faking it. The fatigue, osteoporosis, bone pain and body covered with lesions are obvious proof (aside from my tryptase levels and urine histamine levels), but sometimes i feel like I don't get the whole thing. So many people are so angry, so resigned, so bitter...sometimes I don't know if my input is good or not. I mean, I'm not on the same level as many of those people. I'm not as healthy as a "normal" person, but I'm not as in bad a shape as many of my cohorts.

One weird thing is that some people are jonesing for the diagnosis. They haven't gotten it yet, they've had doctors tell them they don't have it, but they need it. i don't get that. I mean, having an answer to all the weird blood tests, the fatigue, the pain, it's great, but man, I'd trade it all in a second for a day of normalcy again.

I've decided to start crafting to kill time until I acclimate to my meds and can work again. Obviously I'm coating myself in protective gear, such as a hardcore mask, non latex gloves, and moving forward I'm going to wear goggles.

I'm being a little selfish!

I've had a couple people mention "hey your birthday is coming up, and it's a big one what would you want?", which is neat and appreciated since i guess 30 is sorta a big one, and honestly, the fact that I didn't go insane during 29 is also pretty big (to me). To that I guess I can respond with 5 things

1)a friend of mine was in a pretty terrible accident earlier in the winter and is going to be needing some help. their wishlist is pretty fulfilled, but like I said when this happened, donating blood is always awesome and something I wish I could do, but really shouldn't. Some doctors say it is ok, some say that it isn't, and the lack of clarity makes me feel uncomfortable with any risks the recipient might have as a result. This i something that will haunt me until I get a firm answer since I have pretty rare blood (I don't carry CMV antibodies which most of the population has, as somehow in my 30 years I've managed to avoid every single strain of any herpes type virus, which sadly makes my blood very valuable to hiv infected patients and premature babies needing tranfusions) I really can't afford to donate more to their cause than I already have, what with the not working and my own rather large medical bills (insurance doesn't cover all my treatments, and we have to go through this long and tedious reimbursement process). So yeah, that's the big one.

2) the always my exciting amazon wishlist

3) mix cds. i love music, i love my friends, the two combined seem to make a lot of sense, especially as I really can't afford to go out and buy music with the same voracity that I used to.

4) as always, donations to the mastocytosis society are always pretty keen. Everyone has already been incredible in this regard, but the more money raised, the more resources available for people suffering this disease. I'm lucky in that I live in an area where there are a lot of specialists and resources available to me, other people, not so much.

5) Donations to the American Heart Association. My dad suffers from heart failure, mast cells play a large role in heart failure. Totally selfish, but whatever. It's my birthday, I can be selfish.

ow ow ow ow

I think I have a tiny cavity in one of my teeth. The timing is excellent because I'm going to get my teeth cleaned on Monday, but I'm nervous about the cavity issue. I've spoken to my Dr. as well as members of the TMS about what types of anesthesias work best and my dentist, bless him, did a ton of research on mastocytosis once I became his patient. Chances of me having the cavity work done on Monday are pretty slim, but I'm still not psyched about it. A few months ago i was supposed to have a lumbar puncture done, and during the numbing process, I reacted pretty harshly to the lidocaine, though we don't know if it had epi in it, or if the neurologist knicked a vein or what. I'm none too thrilled about this. Part of me is concerned the gastrocrom is potentially causing some of these issues, since I never really had the amount of mouth pain that I have now before I started taking the stuff. I've started watering it down more to see if that helps.

In other news, I'm going to get my hair done in about half an hour. My birthday is in 13 days, and I feel like looking all purty for it. 29 was the most wretched year of my life in a lot of ways, and I want to start 30 off right. Or at least aesthetically pleasing I suppose.

Not too much else to report. I've been trying to do my self hypnosis stuff at home, but failing miserably since I get fidgety or decide there is something I MUST GO TO right that second, or I fall asleep.

One thing that has made me happy about being really open and upfront about my illness and trying to maintain a somewhat widespread or loud internet presence, is that in one of my yelp reviews, I mentioned having ISM and about how much I loved my hospital and my doctor and how without them I'd be lost. WELL, apparently there was some woman using yelp to find a better doctor as she'd just been diagnosed with ISM and given little information, so she contacted me to find out about my dr. I gave her all the information I could, as well as my email address in case she wanted to chat, but I haven't heard back from her. Hopefully everything has or is working out ok for her, but at the very least I'm glad to have potentially helped someone out a little bit.

After I get my hair done, my husband is going to look at a friend's home gym to see if it's small enough to fit into my office (apparently it's very compact as it works more based off resistance than huge weights) and I'm hopefully going to play with all my beads and trinkets.

Anonymous Comments are on

Hey all (this is mainly for anyone who may have meandered over here from the masto-med mailing list) I didn't realize that I had had my comment settings set so that only people with blogs could comment. That appears to be Blogger's default and is kinda rude. So I've reset it so that anyone can comment on anything they want.

So comment away if you're out there ;)

getting cocky

So, hot on the wheels of my successful djing experience last night, I decided it was time to tackle something that I have been living in fear of for months.

Two of my worse shocking experiences were in restaurants, back when I didn't know what was wrong with me (and the frontrunners were either temporal lobe epilepsy or panic attacks. however a clear eeg and my general lack of anxiety over restaurants pretty much nullified those options)

So, this evening I went out with two friends to check out a restaurant in the new (or redone) mall that is somewhat near our apartment, called the Metropolitan Bar and Grill (at the Natick Collection)

Well, firstoff, they were totally accommodating about my food allergy requests and concerns, and while I did opt for a fairly bland turkey burger with roasted garlic and caramelized onions.

So, it wasn't the most daring of steps to take on some levels, but on other levels, I DID IT. I went out to a restaurant, I ate, and I didn't get sick and I didn't get myself sick with anxiety either. So I am pretty psyched. Two big steps in as many days, I'm thrilled.

After the mall, I went to Michael's (the craft store) to pick up some resin and some beads, as I'm going to attempt to make some crafty things and setup an Etsy store in the next few months. While I'm able to get stuff done like spend a few hours in a club, or eat a sandwich without passing out, I'm still nervous about work and my exhaustion levels have been huge. I'm not sure if it is the drugs, the mastocytosis or what.

In other news, I turn 30 in a couple weeks. Not quite where I'd like to be in terms of life accomplishments (as I was hoping to either have moved up in work or been working on grad school stuff by now) but I'll take what I can get. Sure being psyched about eating dinner isn't as prestigeous as getting a kickass score in the GRE, but it's one day at a time.

One thing I'm bummed about though, is that I've gone 3 days without walking. Mostly due to circumstance, but I'm still annoyed. I was walking about 3 miles a day for the past week and I don't want to lose that momentum.

like riding a bike

I have a few hobbies I really enjoy; videogames, reading, knitting, book binding, all things that can be fairly solitary and can really be done within the confines of my house (which is of course safe and masto proof) but one thing I really enjoyed before I got sick was djing, something I promptly stopped after my diagnosis. There were too many variables; flashing lights, people wearing perfume, standing on my feet for a couple hours at a shot (my osteoporosis is worst in my back and hips so that can get uncomfortable after a while). So many things that were once normal seemed ominous, so I retreated back into my insular world for a while to begin to gauge my triggers to see what was risky and what wasn't.

A month or so ago, a local promoter asked me if I wanted to spin at the club I used to have a residency at. I was equal parts elated and terrified. What if things went wrong? What if I shocked? What if I got so nervous I made myself sick?

Suffice to say, none of those things happened this evening. I dj'd for about 90 minutes and it was fantastic. I don't know if I lost myself in the music, in watching the appreciative crowd, but for those 90 minutes, the mast cells, the medications, the fear, it all just slipped away and it was fabulous.

exhaustion continues

I have good days and bad days (though every day includes at least 60+ minutes of rapid walking, I may start tracking my exercise here), though almost always tired days. Every medication I am on has some sedating properties, and when you add them all together, I'm one sleepy B. I think it's exacerbated by pms (which I don't get, I just get tired, possibly pre menstrual anemia)

I'm on a few mailing lists for people who suffer masto, and I have been seeing posts of people trying to unload one of the medications I am on. Of course they are being smart (and ethical!) by trying to find people either without insurance or whose insurance doesn't cover it. My husband and I nearly ran into that, but thankfully we have one of the branches of BCBS that covers it. His company was recently bought out by a larger company, and while our benefits will remain the same for the next year, I am concerned what next year will bring. A new plan? One that doesn't want me because I would be rolling over with a preexisting condition? I believe there is a law that forbids that as long as the person has remained insured, but that could change.

A few weeks ago I watched Sicko by Michael Moore, and was really horrified at how much more convoluted and fucked up the healthcare system was (and I already don't hold it in high regard since it took around 5+ years to get my diagnoses, during which I had doctors tell me, "there is no way you could be so sick and yet do so much"-in reference to my having a job, to ER nurses implying I was malingering) It just freaks me out and makes me sad to recognize how "lucky" I am, living in one of the greater medical cities in the world, with a husband whose company happens to have really good benefits. It puts a dent in our bills, which are already really steep.

Exercise

One thing that has been frustrating for me in life post-diagnosis is exercise. While I wouldn't say I was ever the most active person in the world, I saw a trainer, went to pilates class, ran 5x a week, just general exercise because I was convinced that my fatigue and general feelings of unwellness could only be helped by an immune system bolstered by exercise.

Before I got my diagnosis, I got very very ill, which made exercise next to impossible. I also went through a severe period of malabsorption, so I ended up losing around 40 lbs very quickly. That was unpleasant for a whole host of reasons, ranging from the damage it did to my stomach and bones, vitamin deficiencies, to just stupid things like how much older I look now, how I had to buy new clothes.

But I digress, that isn't the point of this. One of my current concerns is getting back into exercising while not running the risk of exercise anaphylactic shock, something I didn't even know existed until I had been diagnosed. But it's a possible risk (For those of us with masto it's a higher risk than the general population, and doesn't have include exercise after eating an allergen). So, once I got healthy enough to start exercising, I had to make a few decisions, the main one being, "Do I keep my gym membership?" Aside from the whole potential for shocking due to exercise, staph infections are picked up in a few environments, being prisons, schools, and now gyms thanks to the mega antibacterial stuff they bathe the equipment in. Since Vancomycin is one of the drugs my doctor strongly suggests not taking (and is one of the ones recommended for staph) I wasn't sure I was healthy enough to take that risk. Plus, perfumes, aforementioned equipment cleaning chemicals, were all things that left me hesitant, as well as the fact I knew I'd be an idiot and start pushing myself harder that necessary right from the get go.

I wasn't even sure if I was ready to work out or exercise, as I was still wallowing in the pit of feeling sorry for myself over being diagnosed with a rare, incurable disease. However, I'm not generally one to take adversity laying down, and every doctor had strongly recommended some exercise to help build bone mass that had been lost in my spine and hips as a result of the osteoporosis.

So, I canceled my gym membership with the intent of waiting a few months until I could buy a treadmill, assuming that one less monthly expenditure would make up for one large purchase. My parents caught wind of this, and aware of my current inability to work and my astronomical medical bills, ended up buying me a nice one for Christmas.

I love it, but now it's all about pushing limits. Every day I work out longer, faster, and track my progress and any symptoms I experience while exercising. I won't lie, it feels somewhat demeaning that I used to be able to run 3+ miles in half an hour and now I'm doing about 3 miles in an hour, but for now it's all about building bone density and tolerance. I can't let my arrogance get in the way of temperance, which is difficult. I've been lucky that I've get to go into full blown shock, and don't feel like having it happen out of my refusal to admit that the rules are somewhat different now. But it's a good thing to be doing, even if it is slightly boring. Soon I am going to have a friend teach me some high weight low rep free weights stuff which will burn fat and build muscle, which can only help my body maintain itself.

I'm not sure what the point of this entry is other than stating that it's easy to feel like giving up is the only option, that pushing yourself is scary and not worth it, but I just refuse to see that as the case. I'm not that sick right now (and hopefully never will be)so I figure I should do the best that I can to maintain what health I have control over. That's why I'm doing my boring powerwalking, that's why I'm seeing the hypnotherapist to give me a kickstart with the quitting smoking thing, and a psychiatrist to help me with the anxiety (which I will get into later.I personally cannot espouse the value of therapy enough)

If anyone in the Masto community is reading this, I'd love feedback in regards to exercise; what you do, what you avoid, what you've found to be a trigger..

tired

It's 1pm EST and I'm exhausted today. I don't know if it is my meds, the weather, a cold, or the result of being under or overslept. Regardless, it's annoying. I want nothing more than to get back under the covers and sleep for a few hours more.

My best friend came back from Chicago last night. Another one of his friend's girlfriend was recently diagnosed with having a benign tumor near her Thalamus...we were discussing the implications of this (it being inoperable, the area that is affected controls moods, energy, etc) and my friend made the comment that he wondered what his friend must be thinking, would he want to be in a relationship with her forever knowing she would most likely not get better (i guess surgery is very risky and not an option at this point) and would most likely get worse (intracranial pressure is a bitch I suppose) and I just sort of stared at him for a moment, thinking, "wow I can't believe you just said that to me" but instead I told him he should go ask my partner how they feel. Kinda bitchy, but whatever. I have on occasion had people complain to me about how daunting or terrible some chronic condition (rsi, fms) seems, and I never know how to reply. While I'm well aware of the effects that this will have on my body, the last thing I want it to do is sap away my empathy...The point is to eventually move this into the background so that it's not so...present.

In other news, there is this site called Yelp.com, where you can review local business. Since I'm not currently working, I've had copious free time to review a ton of place, as can be seen here. So I now have "elite" status, which means I get invited to all sorts of bar and restaurant events. Which should be interesting since my diet is still pretty restricted. I feel that until I get a better grasp on things I want to continue with the low histamine diet. It is far from the most interesting thing in the world, but at the very least it seems like a good elimination diet. I really miss cheese the most.

I need to shower soon. At 3, I'm going to see a hypnotherapist to see if it can help with the smoking cessation. Since mast cells have been linked to heart disease, and my dad suffers heart disease, and smoking causes heart disease, it would seem that the less smoking I do, the better off my heart will be.

So that's that. The last session was really interesting, I am hoping this one will be too. It is genuinely amazing the control the mind can have over the body. I know for myself, when I end up in the hospital with tachycardia (I dehydrate very easily which sends my bpm to around 150) if I meditate I can bring it down (obviously fluids and meds help too, but I'm usually hooked up to all the machines before meds are pushed).

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.