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.