Today my middle finger on my right hand is swollen. I have no idea why. It’s the red arthritic swelling that I haven’t seen in a long time. I’ve been taking my meds pretty religiously at the same time every day, so I’m not quite sure what this reaction is. I guess it could be the weather change. I’ve been working out a lot more, so hopefully that’s not causing this.

I don’t have much else to say. I’ve been feeling good overall and I’m hoping that this good news/feeling will continue. Time will tell! Next doctor’s appointment is October 26, so just a few more weeks.

Now I leave and start at Beth Israel. Things are going along nicely, well, of course minus the allergic reaction which has now subsided, but I got a call yesterday that my doctor had been in an accident and wouldn’t be back to work for at least 3 months. WHAT? I guess she’s ok, but that’s all the details they will give me.

I hope she heals quickly because she’s actually healing me!

I went to the doctor’s yesterday to deal with this hive issue. Turns out, it’s not hives, it’s an allergic reaction to my medicine that is actually blisters! GROSS! This explains why it burned my face in the shower though. Needless to say it’s so rare that my doctor didn’t even mention it as a side effect. Less than 1% of people have this reaction, but since I’m the luckiest person in the world, of course I got it. Anyway, as anyone who reads this would know, I hate steriods. I hate steroids more than I hate…creed or nickelback or…the word hipster or…REM. Anyway, the cure for this is, as you could have guessed - STEROIDS! shoot me. It’s a quick blast though. 60mg yesterday, 50 today, 40 tomorrow, 30, 20 and back to 10 which is what I take daily anyway. I took 60 yesterday and 40 today, I couldn’t take 50 because I just couldn’t bring myself to do it. Anyway, it’s already better. Steroids are the worst / best drug in the world. They work SO well, but they are SOOO evil. I’ve realized that all my crazy crying/emo stuff has amplified over the months on the roids. It sucks.

I also joined a study where I give blood every 3 months and it goes into research. If my garbage blood can help someone, that’d be great because it definitely isn’t helping me. On the plus side, they give me $20 every time I give blood which pays for my copay. SWEET!

That’s really all I have. I’m glad this is getting better, it’s already way better than it was yesterday. I’m not still drunk from last night and my hangover is settleing in nicely. My scooter is in the shop and will hopefully be done today. Apparently I put some bad gas in it..who knew that could even happen??

So to sum this up. Hopefully this was a fluke thing. I don’t want to get off the cellcept because it seems to be working really well and it allows me to be on little and hopefully off the roids. I’ll leave you with one of the lasts texts I sent last night to jenny “Lo e you. Ni hii r”. Oh 30 - same as the 20’s hungover and full of regret!

at 3:30pm today I go to the doctor’s to find out why I’m breaking out in hives, not exactly the best way to spend the beginning of your birthday, but it seems appropriate for me.

Tonight I’m going to dinner with some lovely ladies and then hitting up the Young Adults/Best Coast show at the Middle East Down with Zack and maybe Mulkern. Great way to spend the day!

see?

So, I’ll be 30 on Tuesday. I’m excited. I’m not one of those people who is scared or bummed out. I’m single, I have a good job, great friends, wonderful family, an awesome band and I’m 30. What’s the big deal? I’m also broke, generally exhausted and sometimes lonely, but all of that is something I can deal with.

Where do I begin? For starters, I left Tufts. I spent one week in the hospital in April and another week in June and they just were unwilling to change my treatment. IV steroids, IVIG and platelets. Round and round and round we go. I was unbelievably unhappy there and apparently was noted as “a difficult patient” because of this. At the end of August I got an appointment at Beth Israel and met with a new rheumatologist. She was so willing to listen to my issues and was also shocked that they still had me on such a high dosage of steroids (40mg at the time). She dropped me to 30mg of steroids and started me on Cellcept. I few weeks later I met with a hematologist/oncologist and they told me lots of things, like how I was extremely anemic. Why hadn’t anyone dealt with this before? I complained of extreme exhaustion for so long and it was always that my body was going through a lot. Hi, anemic! Ugh! Now my anemia is back in check and my energy level is back up. Thank god because this 30lbs I’ve put on is taking it’s toll.

Needless to say, the new meds seem to be working pretty well. It’s difficult to have to take 5 pills a day when you can only take 2 at a time on an empty stomach. This translates to 2 first thing in the morning (with the 7 other pills I take first thing in the morning), then 2 when work ends and 1 before bed - all on an empty stomach. I often forget the pill before bed, but other than that things are getting easier. It’s part of my daily routine now.

I’ve also finally FINALLY been able to start going back to the gym. It’s hard, very hard, but I can actually do it now without so much pain. I can hold the handles on the elliptical now and my hands don’t hurt and they don’t go numb. Still having the numb leg thing, but other than that, we’re working on it.

I go back to the doctor on Sept 30, so there will be a lot more to report. I’ll be sure to update more upbeat stuff too, this doesn’t have to be a place where I came to bitch and be sad. 30 is going to be good.

I have my first therapy session tonight. I’ve been searching for someone to talk to for a very long time. Try explaining to someone over the phone why you want to talk to someone. I try and make it brief..well you know, cancer, sick blah blah…usually ends with..wow, well, um…yeah, you should call (insert anyone but the person I called). About 9 places later, I have my first session tonight. The therapist seemed overly excited (I’ve never met anyone like you before! join the club lady…), but she seems nice and sweet. She generally sits with people who are actually dealing with cancer, not people who have been misdiagnosed, but nonetheless I imagine a lot of the emotions are the same.

I’m actually kind of excited, I think it’s going to be good for me. Though paying for it is going to suck.

This entry sticks. sorry.

What to do? It’s so shallow to be like “I woudl rather be in pain than bald”, but I mean, I’d rather be in pain than bald.

I’ll never be 100%, there’s always going to be some underlying annoying issue to deal with.

I know this all seems pretty stupid, but I am so unbelievably disconnected from this whole thing that it doesn’t seem like me. I knew a girl once, a friend, who got sick and went through some shit and now she’s ok-ish. I just hope she doesn’t have to go through anything like that again.